Dave's Battle with This Nasty Thing called "Cancer"

2 1/2 Cancer Survivor

2009-10-06T06:58:00.003-05:00

Wow! It's been a long time since I updated this blog. I'm at the 2 1/2 year mark and feeling good. The picture attached is me and some good buddies of mine on a fishing trip to Sitka, Alaska back in August of this year.

I also wanted to attach a link to a website for the American Cancer Society. I'm in it believe it or not. I was asked last year to participate in a commercial and here it is:
www.sharinghope.tv/video/2219726

I also wanted to give an update as to my status.
I'm now 2 1/2 years cancer free. What a feeling! I'm doing great and feel that I'm back to the Dave before cancer.

1 Year Cancer Survivor

2008-04-04T09:23:00.005-05:00

Wow! It's been a year since my last radiation treatment. I guess I'm a 1 year survivor. I'm feeling good these days and have hardly any issues with side effects from the chemotherapy or the radiation. I still have some issues with thick mucus/spit that forms in my mouth during the night, but I've found that keeping a water bottle on the nightstand and waking up a few times at night for a drink helps immensely.

I'm back to work now and have discovered that chewing sugarless gum during the day keeps my mouth moist and I don't need to carry the water bottle with me 24/7. Other than those issues, I'm good to go.

Taste buds are back 100% and I have no problems with any food. Things that I liked to eat before cancer...I still like. Things I didn't like to eat before cancer....I still don't.
I weigh between 148-151lbs, which is about 25 pounds lighter that I was before cancer. I go to the gym at least 3 times a week and workout hard!
So, Life is good....so far.

I've been seeing Dr. Debo, my ENT doc every month for the last year and appointments have now shifted to every two months. I have an appointment with my Oncologist, Dr. Atienza next week. Haven't seen him for about 4-5 months, so it will be good to chat with him and address concerns I have about what if????

I'm worried that the cancer might have spread. Could it show up in my lungs next? How will I know? Are they looking for that or do I have to wait till shit hits the fan? What are the warning signs? Am I scheduled for anymore CT scans or PET scans????
Questions, questions!!!

Right now I'm living one day at a time! I guess that's all you can do. If I find out that I have cancer again, I'll just have to deal with it.

2 years ago I couldn't even spell cancer yet alone knew anyone with it. Now, I don't go a week without running into someone who's life has been or is directly affected by Cancer.

Thanks for everyones prayers out there.....Support Cancer research when asked to donate money....and LIVESTRONG!!!

Marjie and I will be walking in the Relay for Life sponsored by the American Cancer Society this year. I guess the first lap is only done by Cancer Survivors and it's supposed to be a pretty emotional event. It's coming up in a few months. I'll let everyone know and post pics.

The picture of me was taken this past October 31st. I think I still had somewhat of a mustache, but have since shaved it off. Too much radiation. Whiskers don't grow at all on my neck and it's spotty on my lip..Oh Well!

I'll have to get some more up to date pics posted.

10 Month Survivor

2008-02-16T10:39:00.003-05:00

Wow! I can't believe how long it's been since I've updated the blog. I'm now a 10 month cancer survivor. Had a CT scan, chest X-ray and some blood work done 2 weeks ago and according to Dr. Debo, everything looks great. I'm feeling good and most of the side effects of the chemo and radiation have cleared up. I still wake up in the morning and have to spit out some thick saliva and normally wake up in the middle of the night needing a drink of water to swish around my mouth, but other than that I'm good to go. I've found that chewing sugarless gum throughout the day helps immensely and negates the need to carry a bottle of water everywhere I go.
I decided a couple months ago that I was feeling good enough to start back to work again. I went through a long interview process with USAA to be a member services representative. There is a 4 month class that you go through and upon completion of the class you take a test and get licensed. The class schedule keeps getting pushed to the right and last I heard would not start till sometime in the first or second quarter of 08. I ended up taking a part time job at the Navy Exchange as their computer tech during the holiday season. We'll after a few days, I was offered a raise and a full time position. Since I still haven't heard back from USAA, I decided a bird in the hand was worth two in the bush, and I since I really enjoy working at the exchange I accepted the postion.
Marjie has finished her shore tour at Naval Station Norfolk. This was the "Humanitarian transfer tour" she was assigned while I was going through my treatment. She's now checked into her new command, Commander, Amphibious Squadron 8, where she's the special operations/planning officer. The staff she works for is assigend to the USS Kearsarge (LHD 3).
That's about it for now.

7 Months and still clear

2007-11-05T19:48:00.000-05:00

Yesterday marked my 7 month of being cancer free. Wow! What a feeling. I'm really feeling good these days and feel 100% better than I did a month ago. Most of the symptoms I had been experiencing have diminished to the point of non existence. I still wake up and have to spit a few times to clear my throat, but after that I'm pretty much back to normal. Most of my taste buds are working now and most food tastes as it should. I started going back to the gym to try and build up my muscles and get back into shape. I really lost a lot of weight during the radiation and even more when Dr. Debo removed my right tonsil. I actually got down to 133 lbs...that's pretty significant when you consider that I weighed about 171 lbs before the cancer. I weighed myself at the gym this morning and I'm up to 144lbs. I kind of would like to stay in the 144-150 range if possible. We'll see what happens.
That's about it for now....have a job interview with USAA tomorrow afternoon. I hope I get this job as it seems like it will be a good one.

5 month update

2007-09-11T20:27:00.000-05:00

Well, here it is the 11th of September and I'm now a 5 month cancer survivor. I got my left tonsil removed 4 weeks ago yesterday and unfortunately still experiencing pain in my throat. I was however, able to quit using the liquid codeine a few days ago, but had to take a dose this afternoon so I could eat dinner tonight.
Got the results back a week after the surgery and test results came back negative....NO cancer found!!!!!
I flew to Washington last week and spent a couple days Salmon fishing with JR and Jeff, then left for beautiful British Columbia to Lake HiHium to do some Kamloops Rainbow fly fishing. During my stay at the cabin I was able to eat most of the food that was cooked and fortunately did not have to rely on eating yogurt. I was actually thinking that when I got home after being gone for 10 days that I would gain some weight back.
Weighed 137 lbs when I got home and the next morning was back down to 133lbs.
All I can say now is that I'm trying to eat more and more each day and hopefully my throat will start feeling better soon.
Not too much else to report. I'm just so ready to start feeling better and being able to eat food without it hurting so bad.
One thing that has definitly happened is that I think my stomach has shrunk. When I am able to eat, I can no longer eat the quantity that I used to be able to eat.
We'll see what happens in the future.

Tonsil Biopsy

2007-08-14T07:20:00.000-05:00

Went in yesterday afternoon for a Laryngoscopy so the doctor could perform a tonsil biopsy. He just wants to make sure we got all the cancer. The CT and PET scan I had done a month or so ago both showed clear, but this is just another precaution and some added insurance. Dr. Debo also said that if he saw anything weird about the tonsil like scar tissue or it was inflamed or anything that this would be the time to go ahead and remove the left tonsil.
We'll as it turned out he noticed a small scratch which could have been caused by the breathing tube they inserted down my throat, so he went ahead and preformed a tonsillectomy on the left tonsil.
About the only drawback in getting the tonsillectomy rather than the biopsy is that my throat is very sore and probably will be for a week or two. The good thing about getting the tonsil removed is that is definitely one place cancer will not be able to grow.
He prescribed some liquid codeine, some antibiotics (liquid) and some nausea medicine which seems to be working pretty good. Haven't had to take any of the nausea medicine yet which is good. Other than a sore throat I feel pretty good. Plan on taking it easy this week and recovering quick as I'm flying to Seattle in two weeks for our annual fly fishing trip to British Columbia with my buddies.

4 months surviving cancer

2007-08-05T12:44:00.000-05:00

Yesterday was the 4 month mark. I guess I'm considered a cancer survivor now of 4 months...Wheew! It's been a long rough road, but each day or actually it seems better to measure it by the month now since things don't seem to changing on a daily basis anymore, things are getting better.
I'm still experiencing dry mouth and started taking the salagen tablets again to help stimulate my saliva glands. I always have a bottle of water handy and now make it a practice to get up in the morning, pack my small cooler with 6 bottles of water and fill the rest up with ice. I take the cooler with me wherever I go and always have cool water.
My neck will still not grow whiskers below the jawline and the back of my neck is still void of hair but at least nobody can tell by looking at me.
The left half of my neck where the surgery was done is still numb and doctors say it might always be that way. I can live with it!
I'm having minor surgery on the 13th so Dr. Debo can do a tonsil biopsy. One more way to prove the cancer is gone...CT ad PET scan showed clear, but he still wants to verify it this way. I'll report on that when I get the info.

Since I've been cancer free for 4 months, I celebrated yesterday by treating myself to an Offshore fishing trip onboard the "Lucky Dog".

I unfortunately did not catch a fish, but one of my buddies caught a nice 44lb Tuna and one of the other guys got a small Tilefish.

Fishing is fishing and just to be able to go is a plus. Going fishing, enjoying the day with friends and being on the water is what I love. Catching a fish is just a bonus.

3 Month 10 Day Update

2007-07-14T06:30:00.000-05:00

Wow! I can't believe it's been over three months since my last radiation treatment. I'm feeling pretty good these days and only dealing with a few side effects which are lingering on.
I wake up each morning with some thick spit in my mouth that I immediately have to spit up into the sink and then rinse my mouth out. I think this is caused by the dry mouth that I'm still experiencing. Seems like I have to carry around a bottle of water with me at all times and keep drinking small amounts of it.
The whiskers on my face have all grown back from my jawline up, but from the jawline down it's still as smooth as a baby's A**. The hair on the back of neck still hasn't grown back and is just as smooth, but at least most of the hair on my head has grown in just fine. It is considerable finer than it used to be, but I'm getting used to that.

As far as food goes, I can eat just about anything, but foods with a lot of breading, chips, crackers and that type of food don't get broken down very well inside my mouth due to the lack of saliva, so I tend to stay away from most foods like that.

My weight is still down about 20-25 pounds from where I used to be, but I feel good and am trying to gain it back but it just doesn't seem to want to come back. I started back at the gym so maybe I'll gain muscle back and not beer gut or fat.

Other than that I'm feeling pretty good. After talking to my Oncologist and ENT doctor, they both seem to share the same point of view in that those side effects, dry mouth and loss of hair on my neck, may never get back to the way they used to be and I might end of dealing with both of those for the rest of my life.

I'm scheduled for a Laryngoscopy on the 13th of August. Dr. Debo wants to do a biopsy of my tonsil just be sure that no cancer is present. I'm hoping this will be clear and if it is, I'll just start having CT scans every 6 months or so for the next five years with quarterly visits to the Oncologist and ENT doctor.

I've been doing a lot of fishing lately and have met some pretty cool people in the process that not only have boats that can get to where the fish are, but have the knowledge of fishing in this area and don't mind passing along there fishing tips.

I fished with a guy yesterday that is retired from the Navy and had tonsil cancer. He is a cancer survivor of two years. Boy oh boy did him and I have a lot to talk about. He's also still experiencing some of the side effects that I'm dealing with. Dry mouth is the major one and lack of taste in some foods. He unfortunately had to have all of his teeth removed prior to his radiation which seems to be common in a lot of people who have had to have radiation therapy in the neck region. Fortunately, I did not have to go through that. Anyway, it was really interesting talking to him yesterday about his experiences and how he's dealing with things today.

Here are a couple of pics from us fishing yesterday. We cruised 12.2 miles out to the Chesapeake light tower and got a total of 16 Spadefish. Myself and new friend Tommy caught about 8 on rod and reels and my friends Jamie (the cancer survivor) and John the Captain of the boat shot the rest with spear guns while snorkeling around the tower.

Lots of Good News

2007-06-21T13:46:00.000-05:00

Well, here it is June 21st - 2 1/2 months since Dave's last radiation treatment and he is improving each and every day - so much so, that he hasn't had the time to sit down and update this. He is actually out fishing right now...so here is what has been going on since June 5th.

Dave had a CT scan on the 4th and then the PET scan on the 6th. We saw Dr. Debo (ENT) on the 11th for the results - everything looks good - no hot spots (which means no detectable cancer cells) - which translates to me a great anniversary present (we celebrated our 19th anniversary - hard to believe we've been married that long). The next step for Dave is a follow-up appointment in July, and then Dr. Debo is going to do a tonsil biopsy in August - just to ensure that it is all gone. Dave's mouth is healing properly. The thrush is gone - daily consumption of yogurt helps to ensure that. Dave is still having some trouble with dry mouth, he constantly has to have water nearby - and I even stashed a couple of bottles in the car to make sure he is never without.

What Dave can eat is improving every day. This last weekend we were up in Williamsburg and Dave ate a Ham biscuit (just a biscuit with sliced ham - no mayo or anything), and got it down easily with water. Food is still tasting off, but he is trying more and more, starches are not completely out of the picture anymore.

Dave got his first haircut this past Monday - more and more of his hair and whisker are growing back. The two bald spots on the back of his head are finally growing out. He is to the point that he got a military hair cut and he is looking like he used to. His hair is still baby fine, and gray, but he is slowly looking like his old self again. The whiskers on his chin are growing back and the sides of his mustache as well - the center of his mustache is still weak, but it will come back eventually. He still does not have any whiskers on the lower part of his jaw and neck - easier to shave.

Dave just got back from fishing - a sure sign that he is feeling better - and I have to get down there to process the fish that he brought back...

So I didn't post this immediately - fish processing is done and here is a picture from his trip today.

Take care and thanks for all the support and prayers.

2 Months Out

2007-06-05T07:49:00.001-05:00

We'll today is the 5th of June and it's been 2 months since my last radiation treatment. Figured I ought to put how I'm feeling and coping with the situation.

Food still doesn't taste like it should. Breads, pasta, crackers, cookies etc...seem to just get all balled up in my mouth and definitely need water or milk to break them down to make them easier to swallow.

I've found that shrimp and crab taste good and both go down good. I've been eating eggs and cereal for breakfast. Eggs taste good, but the cereal starts tasting bad about half way thru. Fruits also go down pretty well.

My throat gets a little sore every once in a while, but nothing compared to how it felt a month or so ago. Pretty much, I can eat most food...it doesn't all taste like it should but I can at least eat.

My weight is still down (147-149lbs), and I think this is largely due to the fact that I'm just not eating a lot of food. I figure my stomach has probably shrunk a little and since food is not tasting so great, I don't eat much of it. Marjie is constantly on my case about eating and trying to fatten me up.

The thick saliva and mucus is almost gone. I wake up in the morning and have to yak out a few globs of spit, but at least I'm not having to carry around that spit cup.
I'm thinking my salivary glands are still not up to par as proven by food not tasting quite right, the fact that breads and pasta don't break down properly and the spit issue in the morning.

My beard is whacked. I have whiskers on the top half of my face but they stop about a half inch before my jaw bone so my neck is still totally smooth. About two weeks ago, the whiskers started re-growing on my chin.
I still have two bald spots on the back of my head adn Marjie said that she is starting to notice some new hair starting to sprout up on the right side.
The rest of my hair is growing ok but the hair is really fine. It reminds me of a baby bird like an ostrich. Hair color is gray!

I feel pretty good these days, but every once in a while my throat gets sorer than normal or my stomach hurts or something gets out of whack and I start worrying! Who knows!

Had my first CT scan done yesterday and have a PET scan scheduled for tomorrow. I'll call Dr. Debo this afternoon and schedule an appointment with him so we can review the results. He wants to perform a procedure where they put me under anaethesia and he goes in and does a biopsy of my tonsil. I guess it's just to be on the safe side. He says if there is any cancer at that point, he'll go ahead and remove the tonsil....

Just a 2 month update. More to follow.

Good update - Thursday

2007-05-24T12:15:00.001-05:00

Well, it's Thursday and since Dave has been too busy to update this, I guess I should let everyone know how he is doing.

We went and saw Dr. Debo on Monday - very good appointment, took forever, but we had a good discussion about what Dave had experienced over the previous week. He confirmed what we thought about the steroids and Dave's sense of taste. Essentially the Prednisone (steroid) drastically reduced the swelling in Dave's mouth, which made eating and tasting measurably better. And once Dave was off the Prednisone, the swelling resumed and thus brought back the thick spit, and messed up taste. It also changed the environment in Dave's mouth that allowed the bacteria in Dave's mouth to develop into a yeast infection (thrush), which accounted for the sore mouth, sore and coated tongue, and the white patches on the side of his mouth. We actually have the medication to clear it up at home, just needed Dr. Debo's confirmation on what was going on. So Dave is now on 5 Mycelex troches (lozenges) a day - and it has pretty much cleared up all the infection as I am typing this. Yeast infections have been pretty much a common side effect throughout the past few months of treatment. We have another appointment with Dr. Debo next Wednesday - to check on Dave's progress - to ensure the infection is gone, to see about the status of his ears, since we couldn't ascertain really any progress with his mouth in pain. The MRI did state that he had a mucous retention cyst in his left maxillary sinus, which could be causing pressure on his Eustachian tube, causing the hearing loss, but it is nothing to be worried about. It is a common occurrence, as the radiation has disrupted his lymphatic system in his neck, so his body has to develop other avenues or routes to get rid of or process the fluids. Other than that - Dave's MRI is normal - which is very good news.

So as Dave is sucking on his troche - we are continuing to find ways to keep Dave busy. We started tackling the interior painting with the stairwell and upstairs hallway. Tuesday we put on the first coat, yesterday Dave knocked out all the doors, and today we put on the second coat - tomorrow is all the white trim or we are going to take a break and head out on the water for some fishing or cruising the intercoastal. The weather has been beautiful over the past few days - 70-80's and tomorrow there should be no wind - perfect for the Chesapeake.

Well David just got home from school, and I have to finish removing the tape from the trim. Take care and it is so nice to have Dave back up - almost like his old self.

One step forward, two steps back

2007-05-20T19:19:00.000-05:00

We'll here it us Sunday night the 20th of May and I'm feeling like I'm two steps backwards from where I was a week ago. Maybe it was too good to be true, but I was feeling on t0p of the world last weekend.....sore throat was gone, food was tasting good and everything going down the gullet and life was good. Now I'm sitting here with an extremely sore throat, sore tongue and on a scale of 1-10, feeling like a 3. I'm not sure what happened, but as of 3-4 days ago, my mouth and tongue starting getting sore again and the thick mucus came back.
What I'm really worried about at this point is the fact that I may have jumped the gun in getting the feeding tube removed. I'm having a hard time eating food again and now have resorted to only eating soft foods. If this gets too much worse and I get back to not being able to eat food, I'm gonna be sh+t out of luck, because there is no more feeing tube for me to nourish myself.
Marjie thinks I might have what they call "Thrush" which is the presence of creamy white, slightly raised lesions in your mouth – usually on your tongue or inner cheeks – but also sometimes on the roof of your mouth, gums, tonsils, or back of your throat.
A lot of patients who go through head and neck radiation get this. I was prescribe some medicine during my radiation when I was having an issue with the inside my mouth being all screwed, so I decided to start taking it again today.

I see Dr. Debo again tomorrow to review the results of the MRI and to schedule the PET scan. I'll discuss the issue I'm having in my mouth and see what his thoughts are on it. The last time I saw the doctor, he prescribed me a weeks worth of Prednisone. The funny thing is, is that during the week I was on the Prednisone, my mouth, sore throat and thick mucus healed up and that was when I was feeling good. When I was finished with the medicine, my symptoms came back and I'm back to feeling lousy again. Maybe this was just a coincidence...who knows.

So to wrap this up...I'm not feeling as good as I was last week. I'm concerned that I jumped the gun in getting the feeding tube removed. I can't even fathom the thought of going through another surgery to get another feeding tube installed and I'm pretty bummed out that my healing process is taking so long.

More to follow...will see the doc tomorrow morning.

Feeding Tube Removed

2007-05-17T09:25:00.001-05:00

We'll I've been feeling pretty good for the last week and eating food regularly, so I decided to call the doctor and see how long it would take for me to get an appointment to remove the feeding tube. Fortunately, after a little sweet talking on my part, they said to come on in and they would go ahead and do it. This was last Monday the 14th.
I was under the impression that there was some sort of an inflatable balloon that would be deflated and then the tube could be pulled out....Wrong!!!!!! There's a hard rubber ring about the size of a wedding ring and about a half inch wide that's inside and prevents the tube from sliding out on it's own. The doctor said he would count to three and then pull......what no pain medication?...oh sh*t!
He started counting and when he got to 1 1/2, he yanked and out came the tube....Boy oh boy did that hurt, but that was it. He said not to eat or drink for an hour, but after that I'd be good to go. The wound oozed some blood and a little goo for a day or so, but it's good to go now and I'm free of all artificial apparatuses in my body.

The thick mucus in my mouth is just about gone and I don't have that constant urge to spit all the time. I figure that since the mucus is gone, it's allowing me to eat normally again. I'm not back to a 100% yet, but getting closer and closer each time.

I'm still experiencing some ringing in the ears like I mentioned in the last post and still have an issue with the pressure in my left ear. It keeps popping and sometimes feels like I have water or something in there. I have the MRI scheduled for this afternoon and then another follow-up appointment with DR. Debo for the results on Monday. Hopefully we'll get this figured out. IRT the cancer, I should also know on Monday when the first PET scan or CT is scheduled for.

That's about it for now....this blog has worked out very well but I think and hope it's life is almost over. I'll come back periodically to update. Thanks again for all your comments, emails, phone calls and prayers!

Better and better

2007-05-12T19:32:00.001-05:00

Just wanted everyone to know that I'm getting better and better each day. Was getting kind of bummed out lately because it seemed that it was taking so long for me to get back to normal, but it seems things are taking a toll for the better.
I'm now able to to eat 80% of my food and for the last two days have only used the feeding tube a couple times. Food doesn't taste and go down perfectly, but boy oh boy things are starting to taste like they should and I have the notion to try to get back to 100% down the gullet and get rid of this tube. Today is Saturday and all food has been in the mouth with nothing down the tube.

We had some really nice weather the last couple days and since I'm feeling more and more like normal, Marjie and I decided to take the boat out to the Chesapeake Bay and do a little flounder fishing. Went out Friday and caught a few fish and ended up taking home one legal flounder. Had such a good time on the boat, breathing salt air again, and bobbing up and down that we decided to get up early and spend Saturday doing the same thing. I felt so good, I decided to have a couple beers.

Things are going so good that were hoping I can continue to eat food normally and if so, call the doctor and get the feeding tube removed in a week or so.

Only thing that is an issue right now is the fact that the ringing in the ears has gotten a little worse. I've had the ringing in the ears ever since they started me on the Chemo called Cisplatin. In fact the doctor stopped the last dose because he was concerned that it could cause further damage. Anyway, during the radiation, I was given 7 doses of Carboplatin, which also causes some ringing in the ears. I didn't complain about it because I know I needed the drugs to rid myself of the Cancer, but anyway, about a week or so ago the ringing in the ears got worse. Actually, it got worse in my left ear. I kept complaining about it and every day it seemed to get worse and worse. I'm also noticing a loss of hearing in that ear.
I called the ENT doctor last week and made an appointment. Dr. Debo (ENT) cleaned out some wax and gave me hearing test which proved that since December (my last hearing test), I have a significant loss of hearing in the left ear. He said that he thinks I might have Eustation Tube Dysfunction which might be caused by the chemo drugs I was taking. What concerns him is that it is only in the left ear and not both.
He prescriobed be a weeks worth of Prednisone, which is a synthetic corticosteroid drug, and then has me set up to have a MRI next week to check and see if there is any nerve damage. More to follow on that.

A Major Milestone

2007-05-09T18:45:00.000-05:00

It's been a week or so since I updated the blog so figured I'd better since there was a milestone hit yesterday. I finally ate some food. Sunday afternoon I decided I'd try a scrambled egg. Marjie cooked one and seasoned it with a little salt/pepper/garlic mix. Ate about half before the garlic screwed up my tasted buds, but at least got some real food down the gullet. Monday morning I got up and scrambled another egg this time just seasoning it with salt. It went down much better and figured hey, this food deal might be finally working. Microwaved a burrito for lunch and ate half of it, then for dinner cooked up a little pasta with sauce. The spaghetti went down much better than the burrito.
Today, I woke up and had a craving for pancakes...cooked two of them and smothered them in maple syrup. These didn't taste so good, but forced myself to eat half of them. Later in the day while driving around, I stopped at Taco Bell and ordered a burrito. That was nasty...took a few bites and had to throw it away. For dinner tonight, I tried a small bowl of Corn Flakes....it was kind of so so...ate about 8 bites and trashed that. First few bites of food seem to taste ok, but after that it goes to hell in a hand basket. Had 5 bites of pork chop and 3 bites of broccoli with cheese sauce before I gave up for the day. I'm still using the Ensure, but at least I'm getting a little bit of real food down.
Hopefully in a week or so I'll be doing better with the food.

The ringing in ears has gotten worse in the past few days. It's kind of been an off and on again thing for the past few months. I'm also experiencing some pressure in my left ear and have noticed a significant loss of hearing in that ear. The ringing is getting worse and worse and the sound keeps changing. Every time I burp, cough or yawn my left ear pops. Not sure what's going on, but I made an appointment with Dr. Debo tomorrow and hopefully he'll be able to figure something out.

That's about it for now, just trying to get back normal and get on with it.

4 weeks since completion - Dr's Appt

2007-05-02T15:05:00.000-05:00

Well here it is 4 weeks since the end of treatment and Marjie and I just got back from seeing Dr. Sinesi (radiation oncologist) and Dr. Atienza (oncologist). I saw Dr. Debo (ENT) last Monday and all are saying things are looking good.

Here is how I feel - my skin is completely healed although I am not growing any hair on two spots on the back of my head between my ears and my collarbone, my entire neck region and jaw, and I may never have the hair grow back there especially on the left side of my neck. Here is the medical explanation for it all. The chemo drugs I initially got (cisplatin, taxotere, and 5FU) attacked the fast growing cells throughout my entire body. Thus my hair cells were affected and I lost my hair, it fell out and stopped growing all over my body while the drugs were in my body. Now that it has been over 4 weeks since I last had them, my hair is growing back, everywhere except in the radiation field of my treatment. The radiation actually damages the hair follicles, and the higher radiation areas the more damage. So only time will tell if hair will grow back on my jaw. My mustache is pitiful, although I am reluctant to shave it off - it might not grow back.

The inside of my mouth and throat are much better, pink, supple, no scarring. My throat is almost pain free. It is this spit issue that I am having the hardest time with. It is still extremely thick and snot-like. And this is one that I am going to have to deal with for a while. The lack of normal saliva also effects my sense of taste - which completely sucks as it has been over 7 weeks since I ate something. Marjie's birthday meal was probably the last time I actually ate anything of substance, and even then things were starting to go haywire with my taste. Unfortunately saliva glands are the first to be affected by the radiation and the last (if at all) to heal. So there is really no idea when my sense of taste will come back and that just makes eating all that more difficult. Dr. Sinesi and Dr. Atienza reinforced the need to keep putting water or liquid in my mouth to help with the dry mouth and thick spit, as well as to start out with liquid or pudding consistency foods. I still have the feeding tube in, and up to 4 cans of ENSURE plus a day, I am so ready to eat, dreaming about food, but nothing tastes good or has been difficult to get down. So far - only water, Gatorade, and the saligen pill. I tried lemonade the other day and it just burned my mouth and throat (will let things heal a little more before trying again). I tried applesauce yesterday morning, and besides not tasting right, I had a hard time getting it down. I actually swallowed a vitamin pill this afternoon - it was difficult, but I got it down. Marjie has been offering to make anything just to get me to try to eat, eventually I'll let her experiment away to figure out what I can taste and swallow, but just not right now.

Today was my last appointment with Dr. Sinesi, he has basically turned all my follow on care over to Dr. Debo. If I need anything from him he said that he is more than happy to see me, and will continue to track my progress through Dr. Debo's reports. Pretty much the rest of my care has been turned back over to Dr. Debo (ENT), to ensure things continue to look good - I'll do a PET or CAT scan before the end of the month, and then see Dr. Debo regularly for the next 5 years.

That's all for now...I can see this blog start to wind down. I'll update it in a couple weeks. Thanks again for all your support!

Dave

I'm back

2007-04-24T17:54:00.000-05:00

We'll I'm back. It"s been a long time since I've felt good enough to get on the computer and update this blog. Thanks to Marjie for keeping it up to date.
I'm finally feeling better. Boy oh boy does that radiation take a toll on you. Seems like I've been counting down the days ever since I started the radiation thinking to myself that I would begin feeling better once I finished, but was I ever wrong. Since the radiation has a cumulative effect, once I finished with the treatment, the radiation was still working strong on my body, hence me not feeling good. I've been doing a lot of research lately on the effects of patients that have or had tonsil cancer and it seems that everyone that got the treatment like I did, spent the next 2-3 months after treatment recovering.

The outside of my neck got extremely burned like you can't imagine. That's all healed up and I'm good to go with that. Looks like a nice tan all around my neck now.

Sore throat...getting better and better each day. I actually drank a glass of water yesterday and have been trying to drink water and Gatorade at least a couple times a day.

Thick mucus and constant spitting....still dealing with that...This is the real issue/problem right now. Water and Gatorade still doesn't taste normal and as soon as I get a sip down, it causes the inside of my mouth to secrete this thick nasty mucus which ends up causing me to spit.

It's been 20 days since my last radiation treatment so hopefully this mucus situation will begin to get better. I can't wait to be able to eat again. I haven't eaten anything for over a month now. It's hard to watch the family eat at dinner time or watch TV commercials about food. I even dream about eating and food.
I still feel fatigued even after not doing much, but at least I'm up off the couch and trying to do things around the house.
That's about it for now, more to follow.

Friday - 16 days after radiation

2007-04-20T11:39:00.000-05:00

The good news is that Dave is definitely doing better. Each day is better than the one before. Here are a couple of picture taken on his birthday. It wasn't easy to get him to smile, but as you can see, I got one.
David and I got Dave a Oregon Scientific weather station, so now he has a project to take care of when he feels up to it. Dave has been enjoying going through The Wire - Season 1, and is now starting on Season 2.

So here we are with some of the "Dave is getting back to normal" milestones:
- he drove the truck to Lowe's and the doctor's so that I could get peat moss and soil for the yard on Wednesday and then again yesterday as I didn't pick up enough peat moss.
- he is complaining that everything is dirty (not that it is, just a couple of things out of place, and the garage needs to be swept)
- he is taking the Nystatin (swish and swallow). He is actually bearing through that med as it still makes him gag a little - but no dry heave sessions.

Had blood work on Wednesday - and his WBC is still down, actually it was at the lowest point that we have had through this entire treatment process, but his platelet count was on the rise, so Dr. Atienza isn't too worried. Just keeping ourselves away from anyone sick, and lots of hand washing. We are going to recheck his blood in two weeks.

So to top everything off - I went and pulled a muscle in my back on Monday moving a pot of flowers. The Nor'easter we had on Monday, was really blowing everything around and ended up toppling over the flowers that I had just planted in it. So I had to move it close to the house to protect it, and didn't lift enough with my legs. Took it fairly easy on Tuesday. It felt better on Wed so David and I dug up the area around the mailbox and planted lavender, daisies, and clemantis in the area, then spread the peatmoss out in the back yard (only covered 1/4 of the yard). It actually did me some good, the movement worked out the stiffness. So Thursday morning I was still fine so, Dave and I got some more peat moss, and I proceeded to distribute it in the back yard. Big mistake on my part, because either I pulled the muscle again when we were loading the stuff in the truck or I twisted and bent wrong when I was spreading the peat moss, because right in the middle of spreading the peat moss my back started screaming at me everytime I want to bend down, or lift my left leg any noticible height - sending the pain across the top of my left hip. I know - I'm not supposed to get sick or hurt - that is Dave's department. It is just frustrating and I am taking it easy - only doing what I have to, and making Dave help. It is amazing what you have a difficult time doing when your back isn't 100%. I had to have Dave tie my shoes for me so that I could go run the needed errands, pretty pathetic.

We'll get through all of this, another week or so and Dave will be eating again. I am just waiting for the day when he asks to try my food or wants a milkshake or something. Thanks for all the cards, birthday wishes and unwavering support. We couldn't have gotten through this without your love and support.

Happy 45th Birthday

2007-04-17T16:10:00.000-05:00

Well Dave is now 45, and although he is not quite at the stage to enjoy his traditional birthday dinner, he is definitely on the upward swing. The skin on his neck is almost back to normal - just slightly red. We got good news yesterday from Dr. Debo (ENT), Dave recovery is encouraging. In fact his tonsils are looking better than expected - very encouraging from Dr. Debo's standpoint. Dr. Debo took a good look at Dave's tonsils (scope down through his nose) and they look really good - pink with minimal swelling. The back of Dave's mouth is really the only thing left swollen and white. Dave still has the fungal infection to knock out, which Dr. Debo wants Dave to take the anti-fungal medicine by mouth - either the lozenge (Mycelex - clotrimazole) or swish -n- swallow type (Nystatin oral). Both Dave is reluctant to try (fear of gagging), and since it is his birthday, I'm not pushing him too hard. Tomorrow he has no excuses - he'll have to take the plunge and try one or the other, which will usher us into the next stage of his recovery (swallowing and eating).
So once we get stuff down his throat, then it is onto eating, remove the feeding tube, gain weight, and then getting back out on the bay for some fishing. Thanks again for all your support through this ordeal - Dave will be back up to speed shortly.

10 days post radiation treatment

2007-04-14T18:15:00.000-05:00

Sorry for the delay in the update. Dave is finally on the upswing and we are starting to notice the healing process. His skin is noticeably better, he still has a few areas that are tender, but the intense burning sensation is now gone. I would put it into the "missed sunscreen" sunburn category, you know those spots that you forget to put sunscreen on (ears, back of the knees or shoulder, right along the edge of your clothes) and then stay out in the sun too long. They are sensitive, but not to the point that you can't do anything. That is about the stage that Dave's skin is in, so that lets him move his head more.
Unfortunately, his throat is not quite healing as fast, which is as we expected. The radiation was directed at his tonsils - thus more intense radiation burns equals longer healing time. Thursday we saw Dr. Hollis (gastroenterologist), and he took a look at the tube and listened to Dave's lungs as well. All is well - as soon as Dave starts eating again (once the swelling in his throat subsides), just to make an appointment and he'll take out the tube in his office, otherwise we are to see him in three months. If we end up making that 3 month appointment - then Dave will have probably gone off the deep end by then. He so wants to eat something, it is to the point that I really cannot eat anything around him without him giving me the sad puppy dog eyes.
Speaking of puppy dog, Coho is doing much better after his back trouble in January, the chiropractor and the restrictive diet we have Coho on seems to be working. He has a ton of energy and is always ready for a walk or a rumble with his rabbit. You know how it seems that dogs seem to imitate their owners, right now Dave is so imitating Coho's behavior in January, just that heart wrenching look that says I feel miserable all the time, and please make it better.
Dave is getting through this, and once he is able to swallow again, I know his spirits and attitude will improve immensely. And maybe I'll be able to get the outside projects done finally...I am pretty much at the point that I need to truck to get the supplies - and Dave's current state will not handle me or David taking the truck to the store (as silly as it may be - that's my husband). Oh well - he'll be back up and going shortly, my garden will just have to wait a couple more weeks - hopefully by mother's day, I'll be able to have the raised beds built and the garden in.
Other side effects that Dave has mentioned - his ears have been ringing constantly now, we think it is from the Carboplatin, and will talk to Dr. Debo about it on Monday. His weight is on a slow decrease - he's down to 153. Dave begrudgingly takes that 4th can of ensure before bed. We are pretty much in a routine of something going in every 2-3 hours. I finally had to write down everything that he took to make sure that he got all of his meds and to stop the disputes about how long it had been since the last session, as it seems that I am constantly coming at him with a glass of something (ensure, juven, pedialyte) to put in the tube.
Well I think I have rambled enough for now. Thanks again for the comments, emails, thoughts, and prayers, your support is nothing short of outstanding.

Wednesday Night - through one week of recovery

2007-04-11T18:58:00.000-05:00

Well here it is Wednesday night and Dave is still miserable. Today was blood work at Dr. Atienza's office, and Dave was low on WBC and platelets, so we will have to go back again next week and get it checked again. We talked to the nurse, Sara (she is an absolute angel), and she explained what is going on with Dave's blood - essentially with the chemotherapy the lowest point in blood counts occurs 7-10 days after the treatment. Which is today, and although it is expected, they are still concerned - thus going back next week. So in the mean time we are going to be avoiding anyone who is sick, continue with the consistent hand washing, and doing what is necessary to keep Dave healthy.
My apologies for the missing pictures - every time I go near Dave with a camera, I get the look, and have to acquiesce to his wishes. On the bright side, the skin on his neck is looking better. It is still painful, but it has gone through the flaky stage and is now that tender new skin. He will probably peel/flake again, but I can see progress. The pain in his throat is not easing at all, and is really wearing on his outlook. I know that he is wanting to eat something again, but doesn't want to chance going through the pain of dry heaves when it won't go down. He has had about two dry heave sessions a day, just trying to get the mucus/spit out of his throat, he is still not at the point for it to go down. He hasn't even tried the ice chips as Dr. Debo had suggested.
Tomorrow we are going to see Dr. Hollis (feeding tube). This is the first that we have seen him since Dave started the radiation. I've noticed a little redding around the tube and some minor drainage, which also goes along the same lines as his lower WBC. We saw this same thing happen when Dave was going through chemo back in Nov and Dec. I don't think he is at the antibiotic stage, but we are keeping it clean.
Well that is about all I have for now. Will try to update this again tomorrow after our appointment and maybe I can get Dave to agree to a photo. Take care and thanks again for everything.

Monday - Recovery week 1

2007-04-09T10:02:00.000-05:00

Needless to say - Dave is miserable, but still doing very well according to his doctors. We just got back from seeing Dr. Debo (ENT), who is Dave's primary doctor through this whole ordeal, and although Dave is miserable, he is looking as expected. Dave went into this treatment very healthy and although it will take some time, he should be back to 90 percent in a month or so. There is light at the end of the tunnel, just the road isn't very pleasant.
Dave's current state:
- Tonsils/throat: still extremely irritated, he does have a fungal infection (very normal), which we are taking medication for, but Dr. Debo would like to see Dave taking the lozenges instead of the ingested liquid. Once Dave gets past the constant gagging stage, then we will switch to the lozenges. Since this was the first of his side effect - it will probably be the last of the painful side affects to subside. Dave's radiation was directed deep into his neck (tonsils and lymph nodes) so that area has the most damage right now.
- Thick saliva: this one will probably be around for a while. Dr. Debo would like to see Dave trying ice chips to put more fluid in Dave's mouth - hopefully loosen up the spit, make it easier to swallow as well as getting his throat back in the mode of swallowing. Also increasing the fluids at night. As it is now, Dave is sleeping pretty much through the night, but when he wakes up he is very congested and his saliva/snot is thick, causing him to gag and dry heave to get it out of his system. Dave welcomes the sleep, just doesn't relish waking up to the hacking.
- Skin: Dave's neck is definitely in the healing mode and his outer layers of skin are becoming very dry and starting to flake and peel. It is also extremely painful, to the point that I have to be very gentle when I put the cream on his neck. If there was a way that I could spray it on I would. Any sort of rubbing just causes pain. To put the degree of sunburn into perspective...take your worst sunburn, and then neglect to take your skin's warning and continue to go out in the sun every day for a month. Essentially burn upon burn upon burn, so now he has to heal from it...it takes time, and the pain has to be endured.

So Dave is hurting on the inside and outside of his neck - moving his head, stretching the skin, swallowing, all bring about pain - although the good thing is that our bodies are remarkable and this will all heal - time, patience, hydration, and nutrition. We are taking things one day at a time and Dave should start to feel better in a week - until then we press on.

Pictures in tomorrow's update.

Saturday Morning - day 3 after finishing treatment

2007-04-07T07:48:00.000-05:00

Dave has had a miserable few days. His neck is extremely sore and tight, to the point that he doesn't want to turn his neck or even talk. Wednesday and Thursday he was able to get some sleep, with the help of the pain medicine. I actually got a fairly good night sleep on Thursday as well. Dave still has the extremely thick spit, which he is hacking up on a fairly regular basis, and in the morning, he has been racked with dry heaves trying to get the mucous out of the back of his throat, which of course just wear him down.
The skin on Dave's neck seems to be drying out. Pretty much as your skin would after an intense sunburn - the outer layer gets tough and eventually peels off. Dave is entering that stage, but as his skin cracks off - the skin underneath is very raw, tender, and painful. A perfect example of that is when Dave gets out of the shower, his neck is extremely painful until we get the cream (Biofine) on his skin, and although he cringes through the application, it does provide relief, by cutting through the sting and softening up his skin.
Everything is still going in through the tube. He's pretty good about getting the stuff in, it is just getting enough of the stuff in. At a minimum he is getting 3 cans of ENSURE Plus, 2 pks (12oz) of Juven, and all his meds, it is that 4th can of ENSURE Plus that may or may not get done. As always, attitude is everything, and of course, when he doesn't want to do something, he can be stubborn about it, especially when he is in pain.
David and I are continuing on with everything else. David decided on staying close to home for college and is going to attend Old Dominion University in Norfolk. Prom is right around the corner in May, so he is working on his plans for that, then we have his graduation in June. I can't believe my baby is grown up. Other than that, we are still working on the yard (garden, flowers, lawn) and the house (painting and minor repairs). It is kind of like when Dave was on deployment last, only this time he is here and pretty vocal about his opinions. Well we are pushing on as always, and will be very glad when Dave is back on his feet again. Thanks for all the support, love, comments, prayers, cards and gifts, they have been so very helpful through this entire ordeal. Thank you again.

Finally done with the treatments

2007-04-05T09:02:00.000-05:00

Well - yesterday was the last of the treatments - no more radiation or chemo. Finally, Dave can focus on mending. We met with Dr. Sinesi (radiation oncologist) after the final treatment and he thinks that Dave is the first head and neck radiation patient he has had to go through the entire treatment without a break. All of the radiation technicians said the same thing, essentially that Dave is the first that they can remember. So in review - here are some of the factors that helped with our success:
- IMRT: focused the radiation energy at the specific targets, while minimizing the damage to the surrounding tissues.
- Dave's age: young, healthy, etc
- Juven: daily consumption of the nutrition drink. Juven is designed to help in the healing process. Dave started taking this as soon as we started the fitting. Two packets a day, and he is still taking it.
- XClair / Biofine: Dave was and is still religious about putting it on daily - He used the XClair until his neck became too tender / burned - through week 5 to tolerate the application of this semi-thick cream. We are now using the Biofine due to creaminess - very easy to slather on his neck - relieving the burning sensation. The goal is to prevent his skin from drying out as it heals.
- Salagen: This stimulates the production of saliva, and although we don't know what it would be like without it, we really wouldn't want to find out. Dave's mouth is slightly dry, and he is hacking up spit through out the day and night.
- Home mouth rinse: 1 quart water + 1 tsp salt + 1 tsp baking soda. Dave rinses his mouth out continually throughout the day with this. It helps keep his mouth fresh and moist and get's Dave's mouth closer to a normal condition.
- Biotene Mouth rinse: Also a great product that helps out the state of Dave's mouth. It has a minty flavor, so it is a good change and helps to refresh Dave's mouth.

Even though the treatments are done, Dave will still have to deal with the repercussions of the last 10 treatments over the next two weeks. Radiation treatments have about a two week lag time, on the side effects. And Dave finally reached his max pain tolerance yesterday as well, and asked for help. Dr. Sinesi prescribed a liquid form of Vicadin to take when the pain gets too much. Dave took some last night before bed and only woke up a couple of times to hack up a spit ball or two. Dave is looking at only using it when the pain gets too much. Dr. Sinesi also stated that Dave should be back to about 90% by the end of the month. We should start seeing the outside of his neck healing faster than the inside, which just makes sense as it was the last to get sore and unbearable. We should start seeing improvement with his throat in a couple of weeks. In the meantime we are continuing to use the feeding tube and Dave is up to 4 cans of ENSURE Plus a day. I am figuring that we are looking at about three more weeks with the tube, but I know that as soon as Dave can get that tube out he will - great motivation to get the throat healed and back to eating.

Going through this whole process, I am glad that Dr. Sinesi has his feeding tube policy for head and neck patients. It has helped us minimize Dave's weight loss - a total of 14 lbs in the 7 weeks. But realistically speaking, Dave is only down about 6 or so pounds, because he increased his weight prior to the treatment, and his reluctance and stubbornness on the Ensure feedings added to the weight loss. Even though I was right on what he needed nutritionally, he had to hear it from the dietitian for it to be true, valid, or for him to act upon. Oh, well - when you are sick, you don't want to listen to your spouse anyway. He is getting what he needs now, and once he is back up to par, it is back to the gym to build back up his muscles - his arms and legs have become a little skinny over this ordeal.

Thanks again for all the support from everyone.

Finally - down to only one treatment left.

2007-04-03T17:12:00.000-05:00

Well here it is Tuesday evening, and we are looking at the last radiation and chemo treatment tomorrow. And the bottom line is that Dave is miserable. He is trying not to talk, his neck is extremely sore - inside and out -, and he desperately wants to feel better. Tomorrow we will see Dr. Sinesi (radiation oncologist) and I think the biggest concern that I have is the fact that Dave is unable to swallow or get anything down his throat.

We got a call from the American Cancer Society nutritionist today, and since Dave is down about 7 pounds since we talked to her a month ago, she wants us to increase the Ensure to at least 4 cans per day - preferably 5. Dave is taking on three right now. Other than that he is doing pretty good on keeping his fluid consumption up and he is still trying to walk and move about to keep his body somewhat active and his muscles engaged.
Speaking of muscles engaged - I think some of the problem with Dave being unable to swallow is that was getting into the habit of not swallowing unless absolutely necessary (the 4 times a day needed to take his pills) , primarily due to the fact that his throat really hurt - swallowing razor blades is how he described it. Like I said we will see the doctor tomorrow and we'll have a better idea of what is going on with that. We also have an appoint with his gastronomical doctor next week, so there is another avenue for thoughts. But as it is right now - everything is crushed up and fed through the tube - Dave is very proficient at feeding himself with the tube - pretty much he puts something in the tube every two hours or so.

Other areas is that the sprinkler system is now in and it is now up to me to get our yard in order. With all the work that we had done over the past couple of months, the yard is not looking like the typical Vigal yard - just a lot of dirt among the grass, no flowers, weeds, and the sprinkler system left some high spots in the yard. So David and I have our work cut out for us, time to get the mower out, visit the local nursery, and get our hands dirty.

Well I've bounced around to a lot of topics. We are surviving this, nerves have been stretched, tempers have flared, and alternatives and comprises abound. Each day is different and each struggle only makes us stronger - I will be so glad when all of this is in the rear view mirror. Thanks for all the support.

Starting the final week of radiation - 3 sessions left

2007-04-01T17:15:00.000-05:00

Well it is Sunday and Dave has 30 sessions under his belt - 3 to go. Dave has been trying to do stuff around the house when he has the energy. Since Wednesday, we have had a local company out putting in a sprinkler system in our yard. Dave has been very diligent about watching them work and keeping himself out of the sun. The contractor is almost done - they'll be out on Monday to finish up, but our driveway was covered with dirt. So after they stopped yesterday, Dave and I got the power washer out and washed the back patio, front porch, walk, and driveway. We would alternate with the power washer and I had fun moving our sun umbrella around the driveway to keep Dave out of the sun while he washed.

The unfortunate side is that the side affects are getting worse by the day. His neck is extremely red, sore, and 1st and 2nd degree burns which makes it difficult for him to move his neck. For the most part his neck is a deep brown red (looks like a deep tan with a sun burn), there are numerous areas that are starting to blister up. And the back of his neck has peeled as well. We are being very diligent about putting the cream on it. Dave is using the Biofine as it goes on easier than the XClair. We are also putting aloe on his neck as well. He has also switched to wearing tank tops to ensure nothing rubs on his neck.

His throat continues to be extremely sore, and he has been having a really hard time swallowing. Up until yesterday evening Dave has been able to swallow his Salagen pill. This morning it seemed to get caught 1/2 way down and his body decided to try to bring it back up and he spent a few minutes dry heaving with nothing coming up. He was extremely spent after the ordeal. So we switched to crushing it up as well and sending it through the tube.

His spit continues to be thick, and varies in color from clear/white to yellow and occasionally will be tinged with blood. I am trying not to cringe when he hacks and gags trying to get the spit out of the back of his throat. The strain is taking it's toll on Dave. He has pretty much spent the day on the couch - with not much energy or desire to do anything. We maybe went overboard yesterday with the power washer.

Overall - we'll be glad when this is done, and of course the sooner the better. All the comments, cards, emails, prayers and wishes are greatly appreciated. Thanks for all the support - we will be through this soon.

4 to go

2007-03-29T15:24:00.000-05:00

We'll I'm feeing much better today. Throat is still awfully sore but seems like some of the mucus stuff in my mouth has subsided a little. I'm now thinking some of the excess mucus may have been caused by allergies. All our trees in the area are in full bloom right now and heavens knows what else. I never had allergies since I moved away from North Carolina and maybe there back. Anyway, whatever the case may be, mucus has subsided a little and I'm feeling much better. What I am feeling is serious dry mouth...spit looks like cotton balls. Fun fun!!!

Neck is really really red and looking like a sunburn from hell. Still using the Xclair cream and that seems to be working. Marjie noticed this afternoon that it's beginning to peel but I should be able to deal with it.

Saw Dr. Sinesi today after treatment and he said again that he finds it hard to believe that I've been able to make through all these treatments without a break. He said that as far as radiation therapy goes, head and neck is by far the worst to get and he can't even remember when someone was able to make it without a break. He also gave me some words of encouragement about the healing process and said I should start seeing positive results in 4-6 days. He said that the mouth would be the first to heal. He looked inside my mouth and said everything looks good/normal...he's seeing lots of redness and whiteness which is worse than the red, but says everything looks on track to heal properly. Said that I should start feeling much better after 2 weeks and be able to start eating again and then by a month I should be at almost 90%....

That's all for now, more to follow...

6 sessions left, but now what????

2007-03-27T12:44:00.000-05:00

6 more to go. I can hardly wait, but I'm feeling worse and worse as the days go by and now starting to ask the question to my docs as to when I can expect feeling better. Unfortunately, I haven't got one good sign that things will be getting any better for me for at least a month or so. In fact, what I'm finding out is that things may and more than likely get worse! Much worse. This thick mucus stuff in my throat is the worst. I'm constantly gagging and hacking the stuff up. Sleep is now what it used to be as I know wake every hour or so to spit up in the cup or run to the sink to hack up a loogy. My throat is so sore I haven't been able to put anything down it in such a long time.
I finally went to my Google Groups website and have been asking other tonsil cancer patients about what their experiencing and unfortunately, again, I'm getting the same kind of responses. Here is the latest I received from Stuart this morning:

"This is a message I sent Dave which may be helpful to others going through the later stages of treatment or the first few months thereafter.

Hi Dave,
My name is Stuart. I'm a physician who was treated recently for tonsil ca so I have been through exactly what you are describing. I finished IMRT at the end of October 2006 and was absolutely miserable with that thick mucous you are describing for about 2 months. It will choke you and it is very difficult to expectorate.

It is due to several things: Firstly, the mucous from your nose will drain down the back of your throat and will not be thinned out as there is no saliva. There is an increased production of nasal secretions that will probably linger for the next 2-3 months following completion of your therapybefore it starts subsiding. Secondly, your saliva has 2 components: a serous component which is thin, and a mucinous component which is thicker. Both normally work together to breakdown your food and lubricate your mouth and throat. The thin or serous component is what is usually gone after radiation therapy. You are left with the mucinous or thick component plus the mucous draining down from your nose. The third thing is due to the ongoing radiation. The tissues in the back of your pharynx are swollen and inflamed and this makes it difficult to swallow anything. Unfortunately, I found out that this does not go away within a week or two after completing radiation. I have spoken to several radiation oncology colleagues and what happens is that the radiation continues to work its effects on your tissues for months after you finish treatment. It is as if your tissues absorb the radiation and then slowly release it. Hence, you will be miserable for the first 2-3 months after therapy. I ended up needing my feeding tube for about 2 1/2 months after completing therapy as that is the really rough period. You will also be very fatigued for the first three months following RT.

What can you do?
Well, be careful around sick people. If you catch a cold as I did several times the mucous coming back from the nose becomes even more tenacious. If the mucous coming out of your mouth starts turning green or yellow ask your physician for an antibiotic for purulent rhinitis (I usually took augmentin elixir down the tube). Stay well hydrated. I put alot of gatorade down the tube with a toomey syringe (about 400 ml at a time usually 4-5 times per day). Make sure you do this frequently. As your mouth will always feel dry you will only know you are well-hydrated by the number of times you urinate, the volume and color. You want to make sure it stays fairly clear. You will not sleep well at all for the last weeks of radiation and probably the next few months after therapy due to the choking issues. I was frankly, too scared to go to sleep and sat up in a positional bed reading, as you stated with a bucket at my side. I would get out of bed very frequently, dragging my IV pole with pump for the tube feedings with me to the bathroom to gargle with initially undiluted biotene mouthwash, followed by hot water with a sip of biotene and finally hot water alone. This will be a very tough time for you and the repetitive trips to the sink will wear you thin and batty. Many people going through treatment become very anxious and depressed during this period. I would occasionally take a 25 mg benadryl tablet and cut it in half and crush it and put it down the tube. This will help a little in that it may control the thick mucous from the nose for a few hours, make you sleepy and allow you to rest a little but it can also dry your mouth. I would also take Ambien 10 mg (not the CR because you can't crush it) break it in half, crush it and put it down the tube. This will allow you about 2-3 hours of sleep before you will have to wake up and go gargle. I would then crush and take the other half of the ambien down the tube. I took roxicet elixir down the tube, it didn't do much for the pain but it did have a mild relaxing effect. I also wore the duragesic patches for a while toward the end of treatment and for about a month after as the pain in the pharynx was very uncomfortable. Whatever pain meds you take, make sure you cut the dose back slowly when you feel you no longer need them as you can have withdrawl effects. The very thick mucous you are experiencing now will be very debilitating as you can't swallow it (you'll start gagging and choking). Once the thick mucous from the nose begins to subside you will still be left with the mucinous component of your saliva which is thicker than normal saliva and not very helpful for swallowing or lubricating your throat. At that point, hopefully the inflammation will have gone down some and you will be able to swallow water. The dry mouth may not seem too bad at that point but it will get worse before it gets better. As mentioned above the radiation continues to work on your salivary glands for months after RT ends. Typically, saliva production decreases for the first 3 months following RT and then plateaus at its nadir for the next 6-9 months before it starts to come back and then it can take up to 2 years before whatever you are going to recover (I've been told with amofostine and IMRT about 60-70% of what it was before treatment but not everybody recovers the same amount). I hope this helps somewhat. I always felt that that having the best information helped me cope but it is still very tough, particularly the phase you are going through.
Best wishes,
Stuart"

Boy oh Boy does that worry me. So even though I'm almost finished with the radiaiton it's looking like I might not even be close to being out of the woods! :(

Finished with week 5 - on to Week 6

2007-03-24T14:16:00.000-05:00

It's Marjie again, and since Dave hasn't updated this since Wednesday, an update is due. Overall Dave is doing well - thankfully we are done with Week 5. Wow 25 treatments done, 8 to go (YEAH!!!!!). Overall Dave is still looking good - pretty much maintaining his weight and going through the inevitable roller coaster of good moments and bad. I had to badger him to put the post in on Wednesday. Here is this week's photo:

We saw Dr. Amin (radiation oncologist) on Friday and he confirmed that Dave only had to do 33 sessions, so if there is no delays then we will be done with the radiation a week from Wednesday. He is impressed on how the treatment is going. Dave is actually doing really well with the treatment and we have been able to keep his side effects to a minimum. His side effects continue to be the very thick spit, and it has reached the point that it gags him as he is trying to get it out of his throat. He has had a few episodes of dry heaves as a result of the spit. We did mention about the medication for Dave's throat causing him to gag - and Dr. Amin took a look and okayed the fact that Dave wasn't taking the meds. Dave's routine of water and rinsing is sufficent to keep things in check.
Dave's neck is still looking very good - slight redness, which darkens if he goes outside. He has been very good about putting the XClair cream on twice a day. The area is not really sensitive to touch, although he is careful about the shirts he wears to ensure that nothing rubs against his neck excessively. So my husband is becoming a redneck. We have noticed little scabs along the top of his back and shoulders - thinking that it may be from the radiation table - and the doctor did look at them and was not concerned - just put aloe on them to help healing.
Dr. Amin also stated that Dave's weight was actually up 1/2 a pound from last week - so the we are on the right track with Dave's diet (3 ENSURE Plus, 2 glasses of JUVEN, and a daily walk). Actually we found that Walmart's generic (EQUATE) is just the same and about $1.50 cheaper per 6 pack. It comes in cans rather than plastic bottles, and we can recycle the cans and can't recycle the bottles in this area.
The final area is Dave's attitude and energy level. He is sleeping a lot more lately, more out of boredom, I think, rather than fatigue. He is tired of dealing with the symptoms. He is getting out though. He helped with the yard yesterday morning (edged the lawn) and then mowed the back yard(riding lawn mower). We have been going on a walk in the late evening as the sun goes down. We are also having a sprinkler system put in, and Friday they came out and dug the well for the system, Dave set up a spot to supervise it in the shade, then he proceeded to start watering the backyard with the sprinkler and had fun for the next couple of hours telling me to move the sprinkler every 30 minutes or so.
Overall things are going well - just ready for this to be all over. Thanks again for all the thoughts, comments, prayers, cards, emails, and support.

2 weeks/10 treatments left

2007-03-21T14:20:00.000-05:00

It's been a while since I last posted anything in this blog and thankfully Marjie has kept it going for me. I've just been feeling so run down these past couple weeks and just haven't had the energy to do much of anything. Seems as if I only feel ok is when I'm sleeping. I wish there was some kind of magic pill I could take that would knock me out for 2 weeks at a time. It would be much easier to handle that way.
Today was my 23rd session of radiation and 5th chemo session. I have 10 more sessions to go and 2 more chemo sessions all ending on the 4th of April. My throat is so sore and tastes buds totally gone that the only way I'm getting any nourishment is through the feeding tube. Can't even remember the last time I ate anything. Basically, I have 3 cans of Equate (Walmart Generic), a day. Vanilla for breakfast, Strawberry for Lunch and Chocolate for Dinner. None of which I can taste unless I burp or something. The only thing going down my gullet is H2O and my 2 daily doses (Glasses) of Juven.
My energy level has significantly dropped and I spend most of my time laying on the couch watching TV. I know, I know it sounds pretty pathetic. I have to carry around this spit cup which I'm constantly hacking in and spitting up this thick mucus all day and night. I cough so hard and have been dry heaving so much lately that I'm now coughing up a little blood every once in a while. I'd have to say that the nausea, leg pains, loss of hair, sore throat, mouth sores, and everything else bad that I've experienced in the last 5 months...the worst is this thick mucus in my mouth and the fact that everything I've tried to eat tastes like poisen. Actually with my throat so sore right now, I don't think I could get anything down the ole gullet even if I wanted to.
The nurses mentioned to me this afternoon that I'm really impressing everyone at the Cancer Treatment Center because of the fact that in their opinion I'm doing so good with the treatment. The thing a lot of it has to do with my age, but they all say that I'm breezing right through this.
All I can focus on these days is the fact that there is light at the end of the tunnel and I'm getting there one day at a time.
Not too much more going on with me....just doing my time I guess...Thanks for all the prayers and support each and everyone of you are giving me and my family..we all appreciate it!

Done with Week 4 - On To Week 5

2007-03-18T10:00:00.000-05:00

It's Marjie again - We are done with Week 4 (20 fractals done, and actually we either have 13 or 15 fractals to go) and I am so glad. We had a significant weather change on Friday - the temperatures dropped 20 degrees Thursday night between 8:30 and 9:30, and we woke up Friday to the temps in the 30's (Thursday's high was 86 degrees). With the low temps also came the gray and rain...and Dave's mood followed the trend of the weather - gray and gloomy. He is getting tired of the thick spit - which is getting to the point that he almost gags on it trying to clear his throat. The fact that food still taste's awful and he has no desire to experiment to find something passable. It's a chore just eating scrambled eggs. The new meds that Dr. Amin prescribed also make him nauseous. The bottom line is that he is just tired of this - and it is pretty much 100% mental attitude now. As the pictures below show his mood:
His neck is still doing well - just starting to get red, but no blisters or open sores. He has been very good about putting the cream on his neck. I just wish he was a diligent at taking his meds.
Saturday Dave remained in a somewhat gloomy mood, puttered around the garage for a little while, and then sat down and watch the NASCAR race. Took a dip in the Hot Tub before bed - hoping to relieve his spirits.

Here it is Sunday, and although he is up and about he is not in the mood to do much of anything - least of all update the Blog. He did however spend some time reading through his email - the comments on the blog, and visited the Tonsil Cancer Support Group pages. I'll get him outside and moving today. We picked up 4 trees on Friday - a birch, two dwarf peach, and a willow tree to plant in the back yard. We need to get it done before we get the sprinkler system in. Then I am on the search for 6 or so half whiskey barrels to start the garden up again, or I'll have to convince Dave to build a raised garden bed in the back yard. Either way - it is March and time to get the yard going.

Weight 159.5

Take care and keep the thoughts, prayers and comments coming - even though he isn't typing he is reading them. Thanks again for all the support - God Bless.

Thursday - #19

2007-03-15T20:31:00.000-05:00

We are over the hump. Yesterday was the 4th weekly session of chemo (Kytril- anti-nausea and Carboplatin) and radiation session (fractal) #18. Things went smoothly, and the nurse there is really good. Dave is surprised at how little pain he has when she has to stick him for the IV. He grimaces every time she has to find a vein to put the needle in. This time it was his right forearm.
After finishing up with the medical stuff, we headed home and are in the process of getting bids to have a sprinkler system put in around the house. So as Dave was finishing up with the owner of the company I think we are going with, I started dinner - Bubba Burgers with cheese. Now of course David and I are in the dog house for having hamburgers for dinner, but I made an extra one and Dave actually sat down and ended up eating the whole burger with mustard (no bun) and had a small helping of beans. The taste wasn't great, but acceptable. After dinner, Dave had a touch of nausea, so we made sure that he took the anti-nausea pill before bed along with his Salagen.
After a night of tossing and turning, Dave woke up a little nauseated, took his pills again and then got up and headed to the Dodge dealer - 30,000 mile maintenance. He wound up sitting at the dealers for about three hours and had to make a direct trip to the Cancer Treatment Center for his radiation treatment. I ended up meeting him there with his meds and some jello. After his session, we went in and saw Dr. Amin (Dave's other radiation oncologist). He looked in Dave's mouth and noticed that he is getting a slight yeast infection, so he prescribed Nystatin (1tsp four times a day) and then Carafate to help his throat out as well (2tsp three times a day). Both are in liquid form, and must go down his throat. One highlight from talking with Dr. Amin, we might be reduced to 33 sessions vs. 35, but I'm not going to count on it yet.
This afternoon, Dave took it pretty easy while I finished the grout on the fireplace, and as the afternoon wore on he started complaining about more nausea, eventually getting to the point that he thought he was going to vomit. Luckily didn't vomit, but his thick saliva is tickling the back of his throat to the point that he is coughing hard to get it up.
Well things have settled down and it is time to turn in. Still taking it one day at a time - hopefully tomorrow will be better as we finish off week 4. Take care and thanks for the prayers and support.

Morning of the 1/2 way point

2007-03-14T05:34:00.000-05:00

Well, here it is Wednesday morning and I thought Dave would up date this. Today marks the 1/2 way point in the radiation treatments. Taking things one day at a time, but I am very glad we are here.

Monday we went to see Dr. Debo (ENT) and he took a good look at Dave's tonsils and throat. All looks good. We talked about his nutrition and weight - he is down 9 lbs since the last visit three weeks ago. Dave's chief complaint is still that food tastes bad, so Dr. Debo reemphasized that the feeding tube would probably be his main means of nourishment, but that he still needs to try to eat - essentially "recreational eating" to keep his mouth (teeth, gums, jaw, tongue, etc) and throat healthy. Dr. Debo also put in a referral for us to see a nutritionalist. After the appointment w/ Dr. Debo, we then went on to the radiation clinic for his daily dose (#16), and I stopped in and talked with Miss Ellie (the Patient Navigator - she works for the American Cancer Society and Chesapeake Hospital) about how to get Dave to understand about his daily nourishment. We have to wait for Tricare to approve the referral for the nutritionalist. She left a message with the local American Cancer Society dietitian to give us a call.

Tuesday - treatment #17, went smoothly - still the chief complaint is sore throat and the taste of food. Had ENSURE plus for every meal and ate two scrambled eggs at lunch. Dave really has no desire to eat anything, primarily because everything taste bad. He even had a hard time getting the Juven down last night.
We talked with a dietitian yesterday, and she gave us some good tips. The main thing is that Dave has essentially given his nourishment over to the feeding tube and Ensure, we are up to 3 bottles of Ensure Plus a day and will probably increase that to 4 here shortly. The key is to keep his weight steady. If he continues to lose weight, increase the number of bottles (one bottle is 8 oz). She gave us some alternatives to mitigate the cost of the Ensure - Walmart's generic "Equate" is comprable, I just have to make sure that I get the "Plus" form (350 cal), and our local VA hospital has a cantena and she think we can get the Ensure there for less as well. Other notes:
- nothing thicker than the Ensure down the feeding tube
- don't force the 8 oz of ensure in at once - slow down and take it in over 10 or so minutes
- keep up on the fluids - 6-8 cups a day (we are doing pretty good on this one)
- try lemon/lime or lemonade in water to make it taste better
- Dave is having a hard time swallowing the multi-vitamin - switch to children's chewable (2 a day)
- if constipation becomes a problem (since he is essentially on a liquid diet) talk to our nurse about daily fiber or other options.
The bottom line is to keep experimenting to find something that tastes decent for Dave to eat, stick with the Ensure to maintain Dave's weight, and keep the fluid level up as well.

Hopefully Dave will update this later today - take care and thanks again - Marjie

Done with Week 3 - On to Week 4

2007-03-11T18:41:00.000-05:00

Well, here it is Sunday, and I noticed that Dave hasn't updated this in a couple of days. He is finally through the third week - 15 fractals down, 20 left. I think he is doing fairly well, actually better than we expected. Here are a couple of pictures:

As you can tell, his hair is starting to grow back. It is baby fine - peach fuzz, both on the top of his head and his chin.

Hi neck is looking good as well. He has been very good at putting the X-Clair cream on three times a day. We've got the Juven drinks down to a routine now - Orange in the AM, Grape in the PM. The hardest part of his meds is remembering to take the Salagen 4 times a day...we've been good at three times, but if I don't remind him, he doesn't take them.

The remaining hurdle is getting him to eat enough. Although on the outside he looks really good, he is hurting on the inside. The combination of the sore throat (which actually subsided a little on Friday and Saturday) and the loss of his sense of taste, makes eating difficult. So we are on the constant battle of consuming enough. My goal is for him to get at least 1500 calories a day - preferably more. Dave and I have come to the agreement that if he doesn't get at least 500 calories at a meal, then he need to drink an Ensure, or other meal- replacement drink. He is not exactly thrilled with the taste of Ensure, and thus the battle ensues. I have been on the pursuit of a nutritious, good tasting milkshake (one that I can pack the calories in that he will not turn his nose up at, since he has been reluctant to use the feeding tube for anything other than water. Yesterday we hit a milestone. After Dave was not able to eat much of a very good steak dinner last night, our good friend from WA, Tami Branch helped me convince Dave to try the feeding tube with the Ensure. Tami was in town going to school for the week and came over and spent the day with us. It was really nice to catching up on all the news in Port Orchard and having Dave hear another perspective on nutrition - other than mine. So he downed a bottle of room temperature Ensure Plus (350 cals) using the tube with really no difficulty. Hooray!

Well tomorrow starts week 4 with fractal 16 - Wednesday we will be at the half-way point. Although I am just here on the sidelines, helping Dave get through this, I will be glad when we are done, and I have my hard charging husband back. It is hard watching someone you love be in pain, and not be able to fix it - He is doing really well at staying positive and busy - reloading, spending time at the gun range with David, helping me paint the inside of the house, and our latest project - replacing the tile around the fireplace. He also just got a new digital camera (CANON Rebel XT), and ordered me a GPS for my car...some good gadgets to keep him occupied while I am at work. Speaking of work - my Humanitarian transfer did go through and I am now on shore duty, and the command is giving me all the time off I need to take care of Dave. It is what I need, but I will say that going from a very high stress - fast pace job focused on schedules and operations, to the calm and almost 100% focus at home is an adjustment for me. Lucky for me, my command knows where my focus has to be (Dave), and although I feel somewhat guilty not contributing to the command, my focus is at home for the next couple of months until he is through this, then I can go back to the working world, and then to back to sea duty again.

So I think I have written enough...Dave is doing well, and the support that all of you have been given us is nothing short of outstanding. Thank you for all the comments, emails, cards, wishes, and prayers. We are taking this one day at a time...and soon enough this will be all over and we will be back out there enjoying life.

Just notes ~
Side effects: sore throat, thick spit, everything taste horrible, mouth hurts
Meds: Salagen (dry mouth), X-Clair (skin), Prilosec (tummy), Prochlorperazine (anti-nausea), Multi-vitamin, Clack's VOA (for sore throat and mouth - not that I can get him to use it).
Chemo: Carboplatin
Products: Juven (Therapeutic Nutritional Drink), Biotene Mouthwash(non-alcohol mouthwash - really good), Home made mouth rinse (1qt water+1t baking soda + 1t salt), Ensure.
Weight: 163.

Take care and thanks again for all the love and support - Marjie

Feeling a little bit better! :)

2007-03-08T20:57:00.000-05:00

Today was the 14th radiation treatment along with the 3rd dose of chemo. Believe it or not, I'm actually feeling a little better than I've felt for the last week. My throat is mainly what I'm talking about. It still hurts a little, but nothing like it's been feeling. Taste buds are still severely out of whack and my weight is down to my normal range or at least what I feel I should be weighing.

Haven't been eating too much for the last week and Marjie must feel like a short order cook these days. We've been trying all kinds of different foods. Most of which I take a bite or two and then have to send back to the kitchen. The only thing I've been able to get down lately is soup, Jello, mashed potatoes, yogurt and scrambled eggs.

Tonight is Marjie's 40th birthday. Happy Birthday Babe!!!!! David cooked steaks, baked potatoes and zucchini. I was actually able to eat the whole potato, a bunch of zucchini and a few bites of steak! Yahoo :)

I received an email and an invitation to join a Google Group today. The invitation was from a lady named Lee, the wife of Raph. Raph was a cancer patient in the UK going through tonsil cancer. He's the one that inspired me to start this blog.

Anyway, the Google group she started is for Tonsil Cancer Survivors, Caregivers and Patients. I think she's invited about 45 people to join so far. It started this morning and I was the first person to post something on it. Checked it again tonight and there are several folks that have logged on and starting to post. I think this is going to be pretty cool. I'll post more about it later after I have a better chance to check it out.

Thanks again to everyone that's been in contact with me lately. Jennifer Martinez and Bill Weier...please shoot me an email. I'd like to keep in touch with you both.

For any of you in the Navy who haven't heard about this website, you really need to check it out. I signed up about a month ago and since then have been in contact with over 30 shipmates from almost every duty station I've been assigned and lost contact with.
Navy Togetherweserved

That's all for now.......keeping the faith in Chesapeake!!!!!

Out!

1/3 of the way

2007-03-06T18:27:00.000-05:00

Today was treatment number 12 which marks 1/3 of the way to the finish line. Side effects in my last post are still here. Very sore throat! Eating is not fun at all. Feels like I have strep throat. Even swallowing spit and/or drinking water takes a great amount of effort and is very painful. Food tastes horrible and really haven't found anything that tastes good or goes down good except for Jello.
I've lost about 10 pounds since last Friday, so it's looking like I'm going to have to start drinking Ensure or maybe even begin using the feeding tube.
Not much else to post tonight. Marjie and I are trying different things in the cupboard like soup and applesauce to see what might taste good and go down ok, but so far nothing.

10th Treatment and Doctor's Appt.

2007-03-02T16:57:00.000-05:00

Had my 10th treatment this morning along with a pretty good doctor's appointment. Dr. Sinesi seemed to be very pleased with my progress so far and thinks I'm doing better than expected with the radiation treatment. Side effects are coming on much stronger now. My saliva is getting very thick and sticky causing me to now have to rinse several times a day with the Biotene mouthwash. I woke up this morning with a very sore throat. It seems to get better during the day, but is still sore. I'm also developing some sores in my mouth and it's hard/difficult for me to open my mouth wide.
Food is now having it's familiar nasty taste:( Had turkey for dinner last night which tasted like cardboard and lunch today wasn't much better.
Dr. Sinesi said that all these side effects are normal and to be expected.
Fortunately we have lots of stuff to combat this dry mouth stuff...nothing works perfect, but at least what we have seems to work a little bit. Dr. Sinesi said that if things get too bad and I cannot get any relief, to let him know so he can prescribe me something different.
Other than that, things are going ok. I'm just trying to cope with this mess I'm in.
That's about it for now...more to follow next week.

7th and 8th treatment

2007-02-28T18:35:00.000-05:00

Finished with radiation treatments 7 and 8 and and the 2nd chemo... still hanging in there pretty good. Not really experiencing too many side effects as of yet except for the start of dry mouth. I'm getting kind of a weird taste in my mouth and every once in a while I'm getting this thick saliva stuff going on. I've been trying different things to combat it and so far have had pretty good luck. Found out that sugarless lemon drops work. Biotene mouthwash works and Marjie made up a concoction of water, salt and baking soda for me to swish when needed. Haven't tried that yet, but will when needed.

I talked to the radiation therapists again today about the side effects and they all said that anything I was experiencing now was probably from that very first radiation treatment. They reiterated again today that usually about the 10 session or 3-4th week is when the side effects really kick in. They keep advising to drink lots of water, keep the lotion on my neck, not to worry too much and when shit hits the fan, use the feeding tube! I guess I keep asking them questions because I want to hear "Hey Dave, you're doing great and it's looking like you might not get all these side effects after all"...but what I keep hearing is "Stand-by for heavy rolls"....

After the radiation today, we headed over to the Oncologist for my Chemotherapy. Before the chemo, we saw Dr. Atienza and got to discuss how things were going and then he got to check me out and ensure I was doing okay. He seems to think I'm doing fine and said we need to press on. He also mentioned that my scans from a month ago were clear and he's pretty confident I'll be able to kick this cancer's butt. I also talked about the side effects and the nausea I have been experiencing this past week. He prescribed me a new anti-nausea medication, Compazine, to try. The Phenegan, he originally prescribed for nausea, really knocked me out when I took it - not a side effect I particularly want. He again said to stand-by for heavy rolls and that side effects and the use of the feeding tube are just around the corner.

After my appointment with the doctor, we headed back to the chemo room to get my drugs. Boy oh boy was that place full today. Every chair in the house was taken and everyone was getting their chemo. The chemo process was normal and took about an hour or so to get it. They started with the anti-nausea bag first and then to the Carboplatin....nothing interesting about that.....talked to Sarah, (my nurse), about what was going on and she basically said the same thing. She said she has another patient that is going through the same thing as me except for he's about 2 weeks ahead of me and apparently he just started using his feeding tube. She said when he was in today, he was complaining of sore throat, difficulty eating and talking with a scratchy voice.

So just to keep everything straight - my current meds/ointments are:
- Carboplatin: Chemotherapy drug - once a week
Along with Kytril for nausea prevention as well.
- Salagen: to increase saliva production / 5 mg / 3 times a day
- Prilosec: to keep my stomach in check / 20 mg / once a day
- Compazine: for nausea / 10mg / every 8 hours
- Multivitamin: currently taking One-A-Day for Men
- Juven: therapeutic Nutrition drink mix / 1 packet twice a day
- XClair: to aid in my skin recover / rub on neck area three times a day
Marjie is having a blast keeping all of this straight.

So what I learned today is that no matter how good I feel now, and how much I want to continue feeling good, nobody out there thinks I'm exempt from what is coming.
They all do stress that each person is different, and everyone handles things differently, to keep up with my fluids and diet not to worry so much.
One day at a time!
Easy to say I say!

I am taking things one day at a time and I will beat this!

Thanks to everyone out there that's been sending me cards, letters and emails of support. I really appreciate them and believe it or not, they actually make me feel better.

2nd Week, 6th Treatment

2007-02-26T17:47:00.001-05:00

Had a pretty good weekend and it was sure nice getting a break from the radiation treatment for a couple days. Only bad thing was that I began getting that old familiar nausea feeling Friday afternoon and it hung around most of the weekend. Seems as if it hits me more in the evening, but it was there Friday, Saturday and Sunday evenings. Didn't throw up or anything, just had an upset stomach and the feeling like I wanted to throw up. Marjie gave me some anti-nausea medicine Sunday afternoon, but it didn't work at all. I spent the entire evening laying down on the couch drinking water and not wanting to eat anything.
I'm also beginning to notice that food is not tasting as it should and I'm starting to get this nasty taste in my mouth every once in a while.

Woke up this morning and the nausea feeling was gone. Yahoo! Drank lots fluid and by the time of my appointment, I was really noticing a thick kind of spit beginning to form in my mouth. Kept drinking water and that seemed to have helped. The treatment went very good today, basically because they didn't have to take any films (CT Scans), and that made the entire time on the table about 25 minutes. Apparently, this week will be nothing but radiation and no films. After the treatment, Marjie and I went to the commissary for groceries and since then haven't had a problem with my mouth for the rest of the day. Felt a little nauseated at the store, but that has all but subsided. I figure the nausea was probably caused by the chemo I got last Wednesday, so I should be okay until at least this coming Friday.

I had been experiencing some swelling in the legs and arms accompanied with sore muscles a few weeks ago. This had been going on for about a month when I finally went to the doctors about it. The Oncologist didn't think it was a side effect from the chemo and since I hadn't started with radiation I decided to see my primary care doctor. After a blood and urine test, and both of them being fine, she referred me to a cardiologist. It's taken about 2 weeks to get the referral and the problem with the swelling and sore muscles have all but cleared up. I guess the reason they want me to see a cardiologist is because they want to rule out anything with my heart that could have been caused by the chemo. Tomorrow is the appointment so I should have more to say about this later.

That's about it for now...as I sit and type this I'm actually feeling pretty good. Just ate dinner and everything tastes ok. Mouth and throat feel good and I really don't have any complaints at this time.

More to follow in the saga!

4th and 5th Session

2007-02-23T18:15:00.000-05:00

It's now Friday early evening and I've completed 5 of the 35 sessions of radiation. Unfortunately, I've been feeling a little nauseated most of the day and beginning to wonder if it's from the Chemo I got on Wednesday or just a combination of the radiation and chemo??? Anyway, it's not too awful bad, but I just have this upset feeling in my stomach and feel pretty tired.

The radiation has been going on as expected taking about 35-45 mins a session. Next week should go a lot quicker because they're not going to have to take CT scans each and every day and all I'll have to do is get the radiation which should only take 15-20 minutes.

My neck looks like it's a little sunburned but it's not bothering me yet and my throat still feels good. No other side effects as of yet except for this upset stomach thing I have going on right now.

That's about it for now. I'm gonna get some soup and hit the sack early tonight. Hopefully I'll feel a little bit better tomorrow.

2nd and 3rd Sessions

2007-02-21T10:13:00.000-05:00

Don't know if I'll continue to post after each and every session, I might just opt to post a couple times a week, but we'll see.
Had my second treatment yesterday afternoon and it went much smoother than the day before. The machine and table were working properly and the technicians said they had had no problems all day long with it. They explained that for the first week (5 sessions), they would be taking CT scans first, then hit me with the radiation right afterwards. Everything went smooth and I was in and out of the machine in about 35 minutes. I'm guessing that if they don't need take CT scans, the radiation portion is only going to take about 20 minutes.
After I was done with the treatment, I talked to the radiation therapists for a while about what I should be doing in regards to home care. They all reiterated the necessity to drink plenty of fluids and keep using the cream they prescribed for me on my neck. I was originally prescribed this cream called Biafine which is for use on radiation dermatitis, then yesterday, the radiation therapists talked to the doctor and they decided to have me use a new and improved product called Xclair. I had some problems finding it, but eventually found it at Walgreens. $70 a tube...thank God for Tricare...it only cost me $9.
I was also given a prescription for Salagen tablets. These are for the treatment of symptoms of dry mouth from salivary gland hypofunction caused by radiotherapy for cancer of the head and neck. So far I haven't experienced any of that yet, but the doctors want me to go ahead and start taking them now.

3rd session today also went ok. They took more CT scans then followed up with the treatment. Seems that if everything is working as it should, I'm in and out of the Cancer Treatment Center in an hour. They called me earlier this morning to see if I could come in at 1115 vice 1145 so I went ahead and did that. Since I finished up just after 1200, I decided to hit Burger King for lunch before my Chemo treatment that was scheduled for 1pm. Marjie had to check-in to her new command today so the plan was for her to meet me at the Oncologist office for my Chemo treatment.

As I was leaving the Cancer Treatment Center I some how ended up in a conversation with a couple ladies who were also there for their radiation treatments. We talked for about a half hour and they want me to come to one of there "People Helping People" meetings next month. It's for Cancer survivors, In-treatment personnel and care givers. They also do some volunteer work around the center and the hospital. Anyway, I end up seeing these ladies everyday because their appointments are right after mine. I told them that I'd go to the next meeting and help out whenever I could.
Anyway, after a quick chicken sandwich at BK I headed over to the Oncologist to prepare for my first round of this type of chemo. Marjie met me over there and after an hour wait because they were so behind, I was escorted back to the old familiar leather recliners. The place was busting at the seems with patients today and every chair was taken up.

Sarah, my nurse came over and explained that they were going to give me an anti-nausea IV first like I had had when I was getting the chemotherapy earlier, then it would be followed up with the new chemo drug " Carboplatin". The side effects aren't supposed to be as bad as what I experienced the last time, but she did warn me about the possibility of getting nauseated and fatigued. I can deal with that as long as I don't get mouth sores, lose anymore hair or if it makes my food taste horrible.
Since the PICC line was removed, they inserted a catheter in my hand and that's how the chemo was administered.
Just like all the rest of the times I'd get chemo, it doesn't hurt and you feel ok while it's going in. It's been a couple hours since I got the treatment and I still feel fine. Time will tell. She said it usually takes a day or so before you feel any side effects and if I get any, they only last for a couple days. Heard lots more talk today about the cumulative effects of the radiation and chemo, so I'm sure it's going to be an uphill battle, but I'm taking it one day at a time.
That's it for now....More to follow:

1st Day of Radiation

2007-02-19T18:55:00.000-05:00

First day is now behind me. It was no worse than what I've experienced in the last few days of getting the films made and the mask fitted. Just like the doctor said, you feel absolutely nothing.

The radiation technicians were having some problems with the table and the machine. After I laid down on the table and got all strapped in, it took them about 30 minutes to get everything set up. Once they got things set just right, the radiation part only took about 20 minutes. The bummer was having to lay strapped down to the table for an hour. My head and neck were throbbing and I could hardly wait to get out of that contraption. All in all, it went well. Like I said, you feel nothing and according to the ladies who were administering the radiation, I shouldn't start feeling any of the effects till about the 10th session. So here we are, 1 down, 34 sessions to go.
Not much more to say about the radiation treatment...That's good I guess! I just need to remember to drink lots of water and keep the cream they prescribed me on my neck.

On another note, Marjie and I are in the process of painting the inside of the house. It's starting to look really good, but it sure is a whole lot of work.
That's really all for now.
Check back tomorrow for day 2 update.

Last test before the real deal!

2007-02-17T11:18:00.000-05:00

Had my last test yesterday afternoon before we start the radiation on Monday. Was again strapped down to the table and mask fitted over my head. Radiation therapist took 12 films just to ensure everything was set up just right before the real deal. I was on the table for about 36 minutes and boy oh boy was my neck and head starting to hurt. I was sure glad to get that over with. It seems like anything more than 30 minutes my head and neck start going to sleep.
The therapists' are telling me that my sessions should take between 20 and 25 minutes, so that should be ok.
All the ladies at the Cancer Treatment Center seem to be taking an interest in me and my treatment. They talk to me each and every time I'm there about taking care of my skin and what I can do to make this upcoming process easier. I must have 3 dozen samples of lotions, potions and creams to put on my neck. They're having me use these products now in preparation. They seem genuinely interested in how I'm feeling and doing whatever it takes to make me feel better about this situation. One of the nurses recommended I start drinking this new product called Juven. It's a protein drink that's supposed to help build lean muscle without you gaining unwanted weight. She gave me several samples and said the product is available at Rite-Aid. The stuff is expensive at $35 a week. Apparently, a representative for the company was in the Cancer Treatment Center the other day and mentioned that they would like to track a patient that is using the product from the beginning to the end of treatment. Well, they asked me if I'd mind participating and if I agreed, they would ask the company (Juven), to supply me free of charge the protein drinks. Juven agreed, and they want me to pick up two cases on Tuesday....I'm pretty happy about that!
That's about it for now. I'm trying not to get too worried about Monday, but it's hard not to.
Marjie and I are having some landscaping work done in the back yard and we are going to paint the living room and dining room this week. Figure at least this will keep my mind 0n other things.
Thanks again to everyone out there supporting us! The cards, letters, emails and comments on this blog mean a lot to us!!!!
7 weeks to go!!!!!

Quick Update

2007-02-14T12:31:00.000-05:00

Just a quick update. A good friend of ours, Kevin Barber, visited for the last few days. We were stationed together in Adak, Alaska back in 1990. Kevin and I spent a lot of time in those days learning how to reload ammunition, hunting ducks and Caribou and shooting guns. Kevin now lives in Georgia and we've been talking on the phone lately trying to figure out a good time for him to come up when I was feeling good. Kevin's visited me here in Virginia a couple times since we moved here in July, but wanted to get up here again and see me and make sure I was doing ok. He couldn't have picked a better time. I'm feeling good and about totally healed up. All the nasty side effects from the chemo last month are gone and I'm pretty much back to normal except for the lack of hair. This chemo really has a cumulative effect because I'm still losing hair. It's been gone from my head for quite a while, I haven't had to shave in over 2 months, but now my whole body is becoming hairless. I never realized how smooth my skin was till it was void of hair.
Anyway, I had a really good time these last few days with Kevin. We've both haven't reloaded ammo or shot any guns in a long time and after numerous phone calls and his visit, both of us have taken the reloading hobby back up. I must have cranked out 500 rounds of ammo last week. While Kevin was here we went to several gun shops and went to two different pistol ranges to get in a little plinking. Going through all this cancer BS, it's nice to get back into a hobby that I enjoy so much. Thanks Kevin for rekindling that for me.
Had an appointment yesterday with the radiaiton folks for a radiation simulation and for them to take some films. After getting strapped to the table and having the mask put over my face and clamped down, it feels much better than the first mask they made, so it will much more comfortable now. I was on the table for about 30 mins while the radiation therapist were fiddling with the machine and for some reason they were have problem getting the film machine to work. They finally took the mask off and undid me from the table and were going to move me to the other machine. I guess someone was getting their treatment so they said I would have to wait about 20 mins and we would use that machine for the films. 10 minutes later, they came to the waiting room and said they had the 1st machine fixed. Strapped back down with mask on and it only took about 25 minutes to get it all done.
I got to see how this IMRT works. This is what the machine looks like: IMRT Machine
There is a whole bunch of information on this if you google: IMRT.....
One more appointment Friday morning for more films and any other final adjustments, and then I begin on Monday the 19th with my first of 35 treatments.
That's about it for now, more to follow...

Radiation SNAFU

2007-02-07T18:08:00.000-05:00

Got a call from the doctors at the Cancer treatment center last Thursday morning asking me to come back in so they could take some additional measurements on the mask. Apparently, Dr. Sinesi looked at the markings and had some additional changes for the radiation therapists. I went in and spent over an hour lying down on the machine with the mask on while the radiation therapist moved me around and positioned my head in the perfect position.
After about a 25 minutes my my head started going numb from lying there and after 60 minutes I was in some serious pain. I contemplated numerous times in my mind about raising my hands and asking the ladies to give me a break, but did not because I knew that I had to lay still in order for them to get all the markings necessary. Finally got everything squared away and I was finished for the day, but had a very sore neck.
Today I went in for a radiation simulation test where they put me on the table where the actual radiation machine is and make sure everything is set up perfect. First I had to lay down on the table with the back of head cradled in this plastic device. Then the radiologist adjusted the table's handles and shoulder clamps to ensure that my head, neck and shoulders were in the same position as it was when the mask was made. Once this is accomplished the mask goes over my face and gets clamped down. Well, here is where the problem began. When the radiologist put the mask on it didn't fit. After numerous attempts and adjusting my hand positions and shoulder positions, it was determined that when I initially had the mask made, my head and neck were incorrectly positioned. That's the reason my neck went numb last week. Unfortunately, all the tests and measurements made last week were for nothing because it was determined that we would have to redo the mask. So after heading home for lunch, I went back to get another mask made. This mask making appointment went much better. The radiologist had me lay down on the table and get comfortable and ensure that this time the neck support that I lay my head in was in the correct position and felt much better. Once that was done, she positioned my hands on the grips and set those up. Finally the shoulders were positioned and everything was clamped down. She made the mask and took numerous readings with the machine. I think I was in there for about an hour, but according to her and the doctor, everything looks fine.
The only issue with this SNAFU is that my schedule is now shifted to the right about a week. I go back next Tuesday for the first simulation and then Thursday for the final simulation. If all works out, I'm scheduled to begin the radiation on Monday the 19th and will finish April 6th.

The Big Radiation Meeting

2007-01-31T14:49:00.000-05:00

Met with Dr. Sinesi (radiation oncologist) today, and things are looking good. My CT scan of the neck and chest are clear. Dr. Sinesi showed us the comparison between the CT scan in October and the one I just had two weeks ago. There is a definite change in the scan, and we saw where the mass was before and the fact that there are no other masses in the scanned region. This was very good news. He went over the proposed treatment plan with us. He is going to use IMRT (Intensity Modulated Radiation Treatment) over my lower jaw and neck area - both sides. My type of cancer is known to spread to either side of the neck - the fact that Dr. Debo (ENT) didn't see any other unusual masses in my neck region, means that the cancer cells are on the microscopic level and what is considered low grade cancer. So the radiation is going to be directed at the left tonsil and specific lymph nodes and local area. The IMRT allows Dr. Sinesi to precisely tailor the radiation intensity and field to minimize the damage to the surrounding tissue as well as reducing the side effects. The plan is for 32-36 radiation fractals (sessions), we'll know the final number next week, given daily M-F. Like chemotherapy, the effect of the radiation is cumulative, and if for some reason, we cannot make a session, it will just be tacked on to the end. The time between session gives the body a chance to repair the healthy cells.
After talking with Dr. Sinesi, we met with Bridget - radiation therapist, who constructed my mask. Marjie was there and the pictures document the process...

The whole process took about an hour. She had me lay down on the radiation table, placing my head on a clear plastic form, and put clamps over my shoulders to open up my neck area.

Once I was positioned on the table, she placed this net-like form over my head.

This mesh type material was moistened and heated then she placed it over my face and neck, pulling up on the nose area to ensure I could breath easily and then she tried to expand the neck area so that it wouldn't be too uncomfortable.

The key placement of the mask is the placement of my jaw.

After the mask hardened, Bridgett then took another series of CT scans, so that Dr. Senesi can make a 3D model of my head and neck to precisely direct the IMRT.

I have two more appointments to ensure the mask fits properly and the markings on the mask are correct for the treatment, before we start the radiation treatment on the 13th.
So what all this means in a nutshell is that I will start my radiation treatment on the 13th of February and should be finished on the 28th of March. Radiation will be given every day M-F and I'll get a new chemotherapy drug, Carboplatin, each Wednesday after my radiation. Thankfully the carboplatin is a much lower dose than I had been getting in the past and should not be getting all the nasty side effects that I had been experiencing earlier. The whole purpose of the carboplatin is to sensitize the cancer cells, which makes the radiation even more effective.
After we were done with the mask, Bridgett gave us a whole bag of samples and information to help with the radiation process - Udderly Smooth Udder Cream, Salagen to help with the dry mouth, lipbalm, Aquaphor Healing Ointment, and Juven Therapeutic Nutrition Drink. The creams are supposed to help when my neck gets red and dry from the radiation. Bridgett then took us to meet Ellie, a patient navigator. Ellie is a stage 4 cancer survivor, who decided that if she survived this ordeal, she would help others through the process and now is a patient navigator, essentially if we had any question or hit any stumbling points, she would help us find the answers.
After finishing up at the Radiation Cancer Treatment Center, it was a quick trip to Burger King for a Wopper, then off to Dr. Atienza's office. Over the past two weeks, my legs have been really sore, especially when I would be sitting for a long period of time. About a week ago, I started noticing that my socks would create indentations on my legs, and that my ankles would appear swollen. This past weekend it had gotten worse so I called Dr. Atienza 's office on Monday, and finally talked to Kathy (Dr. Atienza's nurse) yesterday...we think the swelling may be due to an increase in my salt consumption (Gatorade, salting all my food, etc). So, I've stop drinking Gatorade and am trying to minimize my salt consumption. To be on the safe side, Dr. Atienza ordered up a full blood and urine scan. He checked my heart and lungs and said they appear to be good. Hopefully the swelling is just from the salt. Other than that, things are looking good. I am ready to start and get through the radiation process, hopefully I will not have to use the PEG, but it is there if needed.

Livestrong

2007-01-24T16:14:00.000-05:00

We went out for dinner last night with Marjie's sister Sarah and her new husband Aaron. Aaron gave me a Livestrong notebook that he ordered from the Lance Armstrong foundation. It has a bunch of survivorship tools, stories and topics. There are also 10 of yellow Livestrong yellow bracelets in the package. Marjie, David, my folks and some of our friends are already wearing them so I figured I'd mention this on the blog and if anyone out there wants one, shoot me an email and I'd be more than happy to send one or two your way. I don't want to just send them out blindly because you just never know.

Haven't heard anything from the CT scan results, so I figure no news is good news. Next appointment is still scheduled for the 31'st.

My brother Scott will be here next weekend. He's flying in on Friday the 2nd to spend a few days, so we're all really looking forward to that.

That's all for now!

CT Scan

2007-01-22T19:11:00.002-05:00

CT scan was this morning. Marjie and I arrived at the Chesapeake Hospital about 30 minutes prior to and were out of there within an hour. Everything went very smooth, we had to wait about 20 minutes and then it only took about 15 minutes to complete the neck and chest CT scan. I brought the old CT scan of my neck which was taken back in September to the hospital and dropped it off with the radiology department to use for comparison, but don't expect to hear anything till my next appointment with the radiation oncologist, Dr. Sinesi, on the 31st.
Actually it's probably good if I don't hear anything till the 31st because "no news is good news". If they find something horrible or if something pops up on the scan that is unexpected, I might hear something sooner, but more than likely, I won't hear anything till my next appointment.

Not much else going on with me as far as the Cancer is concerned. Taste buds are fully operational and I'm pretty much good to go. I'm really looking forward to getting all this treatment behind me. We're really not sure when the radiation treatment is going to start, but figure it should be right around the first or second week of February.

That's about it for now. More to follow.

Quick Update

2007-01-16T15:35:00.002-05:00

There's not really anything to update as far as my treatment is going. I'm basically in a holding pattern till next Monday when I go in for the CT scans. Hopefully everything will be clear and I'll be able to get going on the radiation therapy. I'm trying not to think too much about that because I know it's going to be a tougher battle than I've experienced so far.
My tastes buds are just about back to normal and most foods taste as they should. I'm really not having or experiencing anymore side effects except that my hair is still out of whack. I haven't shaved in over a month and I barely have any whiskers at all. I have a little stubble on my head but not much at all. I think Marjie shaved my head about a month ago and it's probably been at least 6 weeks since I shaved my face, now that I think about it. Oh well, it'll grow back someday.
Things are getting boring around here. I can't wait to get healed up so I can begin looking for work again.
David received a letter the other day accepting him to Auburn University. He's so excited. Were hoping he starts getting other letters of acceptance to the colleges he's applied for. I'd much rather have him attend a college in Virginia and pay the in state tuition rather than paying the out of state fees, but we'll just have to wait and see. He's also applied for the NROTC program, and we should hear one way or the other on that in the next few weeks.
Coho is having some issues. He started limping last week for no reason. I finally after a few days of this took him to the vet. As I suspected, they couldn't figure out what was wrong and after taking some xrays, said it might me a compressed disk in his back or something like that. Anyway, they weren't sure and ended up giving him a steroid shot and prescribing some steroids to take for the next couple weeks. The next day he seemed good to go, but in the last couple days, he looks to me like he's in a lot of pain, and is having trouble holding his head up. I don't know what's wrong and will more than likely have to take him back to the vet and possibly take him to some kind of specialist $$$$$. What can you do? He's my little buddy...I gotta take care of him.
Other than that, things are going ok I guess. I'll update this in a few days.

Jan 12 - In the middle somewhere

2007-01-12T20:40:00.000-05:00

I noticed that Dave hasn't updated the Blog in a few days and since it's been a fairly eventful week, I figured it is probably time to update everyone. Dave is pretty much enjoying the break in treatments, and feeling pretty good.
Wednesday was David's 18th birthday (I can't believe my baby is "an adult" now) and we kept it pretty low key. David is still working through a cold - lots of hand washing, hand sanitizer, wiping down all every touchable surface multiple times, as well as pushing the fluids, vitamins, and fruits.
Thursday we had an appointment with Dr. Hollis (PEG) and actually only saw his nurse, Kathryn. Dave's PEG is doing well, it has developed some scar tissue around the tube, but the discharge has pretty much subsided. We talked with her about the upcoming radiation treatment, the possibility of needing to use the PEG, reconfirmed the use of Prilosec and then she gave us some Prevacid in a SoluTab formula. It is in the same family, only it dissolves easily in water - so when Dave can't swallow anymore, I'll just dissolve the tablet and send it to his stomach through the PEG. She has a cousin in Texas who was diagnosis in October with the same type of cancer that Dave has, with his primary site being the base of his tongue. He has been going through radiation treatment since the later part of November. He has a web log that he and his wife keep up to let family and friends stay updated. He elected not to get a feeding tube, and from his last few entries, eating and drinking are becoming a problem. So we have an upside to having the PEG in for so long - Dave is comfortable with it. Cleaning is primarily done while Dave is in the shower with the running water. After drying off, we still put the antibotic ointment around the insertion point, then just a small piece of gauze between the plastic disc and his skin, and tape the tube to his side. His skin is really improving with the lack of constant taping. Dave can even flush the PEG himself - which he has had to do a couple of times since I've been working most of this week - but it is just easier if I do it.
Today (Friday) we went and saw Dr. Debo (ENT). It was a good appointment. Dave has been having a drippy nose for about the past 4 days, and a slight bloody nose in the morning (which I didn't know about until the appointment today). Dr. Debo confirmed that Dave's nose is really dry, and recommend he use a saline gel in his nose to keep it moist. It has been really dry around here the past few days, and I have also woken up to a dry nose the past few mornings. Dave's scar has also been sore the past few days. Dr. Debo also looked at it, most likely Dave either has a couple of stitches that are trying to come to the surface or an ingrown hair or two. We are going to keep an eye on it. We also picked up a letter from him for my temporary humanitarian reassignment request. My CO and XO have been very good over the past couple of months to give me the time off that I need to take care of Dave, but we are rapidly coming up to the point in his treatment where I can't do both, and at this time Dave comes before Navy. After 21 years and the sacrifices that we went through last year - two deployments, I don't feel bad asking for a little time off to get Dave through this. I'm not quite ready to retire yet - have to get David through college. Dr. Debo's letter was the last item I needed for the package - it is going to be sent to PERS on Tuesday, and I should be reassigned to a local shore command by the end of the month. Once through the treatment and Dave is back whole again, I'll be sent back to another ship to finish out my Department Head tour.
I think I've written enough - actually it's 10pm and I need my sleep. Dave will probably update this tomorrow. Thanks for the love, support and comments.

Update

2007-01-08T16:04:00.002-05:00

It's been a couple days since I last posted and every day I feel better and better. I'm actually feeling good today. Most of the side effects that have been bothering me are gone. I still have a slight ringing in the ears which remains constant. I'm actually starting to get used to it.
Food is beginning to taste better and better each day. I can eat most foods now but still things aren't exactly perfect yet. I'm figuring on how things are going that taste buds should be back to normal in a couple days.
Other than that, we're trying to get back to normal operations around here.

My son David, came down with a cold last night and ended up staying home from school today. I'm trying to be careful about staying away from him and not catching his cold. I went around this afternoon and wiped all the door handles, refer handle, phone and anything else we all might touch around here with some disinfectant wipes. Both of us are also trying to keep our hands washed to avoid any more germs. Marjie picked up some of those surgical masks from the pharmacy today and I'm having David wear one when he's around me. This all might be overkill, but since my immune system is down right now, I really don't want to catch his cold. Hopefully he'll be feeling good tomorrow and we can get back to normal in that respect soon.

I'll probably slow down on posting to the blog for awhile since I don't anticipate much happening for the next couple weeks, but I'll still try post something every few days.

Thanks again for everyone's support during this ordeal. I appreciate all the posts, emails, cards and letters!

Still Recovering

2007-01-06T08:34:00.000-05:00

It's Saturday morning here and I'm sitting downstairs with the dog having a cup of coffee. I'm feeling much better today and feel like I'm on the road to getting back to normal. All the feeling of nausea is gone and fortunately the sore throat I was experiencing the other day has also diminished.

I do have a couple other side effects that are really bugging me, but it appears I'm just going to have to deal with them till they subside or finally clear up. The ringing in the ears thing is back and loud noises and such really bother me. If you read in some of my other posts a few weeks ago, I tried to describe it, but it's really weird. Seems if I'm in an enclosed space like the inside of my truck, noises really bother me. And when I'm in a shopping center, all the background noise that is going on tends to become an issue. Again, it's really hard to describe, but with the ringing in the ears and the background noises being amplified or something, it can really screw you up.

Another issue I continue to struggle with is the fact that most food tastes like crap! Again, I'm confident that in the near future this will clear up and food will taste like it should, but in the interim, it's frustrating smelling all this good food and anticipating that it will taste good only to discover that it tastes awful. I'm sitting here trying to think what I've had in the last week that even tastes good and about the only thing that comes close is soup and popsicles. I so want to dig into a steak, chicken, burger, burrito, potatoes, sandwich.......Sheesh, I'm making my mouth water thinking about it.

It must really seem like I use this platform to complain a lot, but you just can't imagine what it's like until you've experienced this. I'm trying to keep a positive attitude through this whole experience but it's tough! I'm having nightmares about this upcoming radiation treatment that's glooming on the horizon. I spent hours and hours yesterday researching websites and reading page after page of data and other peoples tales of what to expect. And the bottom line is that it's out of my hands! What's going to happen is going to happen. I just have to sit here and take it and try to make the best of a bad situation.
One of the good things about reading and re-reading all the information yesterday is that it's reminding me of some of the things that I need to prepare for like drinking plenty of water and finding out what foods other people found that tasted better to them and such.
The nurses keep telling me that everyone reacts differently to the treatment and it's easier for some than others.

Back to a positive note here....I'm really looking forward to getting back to normal and feeling good for the rest of the month. Don't have any major plans, but hopefully sometime next week will be able to get some water under the keel of my boat.

This morning is going to be the first day in a long time that I'll be able to take a shower without saran wrap!!!!!!!!! I just have a band-aid on the PICC line hole now and after my shower, I might just be able to put nothing on it all.

That's all for now. Hope everyone has a nice weekend. It's supposed to get to 75 degrees here. Can you believe that for January!

1st Battle complete! :]

2007-01-04T11:57:00.000-05:00

We'll, the first battle is complete and I'm in the recovery mode.

Had an appointment with Dr, Atienza yesterday afternoon to discuss how I was making it through the third round of chemo and if there were any issues that we needed to work thru. We talked about all the side effects that I had been experiencing and he basically said that from what I was telling him, he'd expect most of what I was experiencing. He looked at my lab work and said that my white blood count and platens were at the levels he would expect. I brought up the fact that I was concerned about the sores on the corners of my mouth and the fact that I was getting some mouth sores. He looked at them and also said that this is what can be expected. He asked if I was experiencing any diarrhea this time, which I am, and said that as soon as the diarrhea cleared up, that the mouth sores and the cracking on the corners of my mouth would also clear up. He said it's one big gastrointestinal tract that's being affected that starts at the mouth and ends up "you know where". He said that if they looked inside my intestines, they'd probably be all torn up too.
He said that overall, he was pleased on how well I was making it through this and that everything was looking great!

What I meant about the 1st battle being complete is because I've now completed the three initial doses of chemotherapy and the next battle will be radiation.

I asked if it was going to be necessary to keep the PICC line installed and he said that his plan was to have the nurses look at my veins to ensure they were good enough to withstand the rest of the chemo I'll need, and if they were, they'd remove it.
That put a smile on my face. No more having to have Marjie wrap the thing in saran wrap every morning for me to take a shower, no more having the home health care providers come out and change the dressing weekly and no more walking around looking like some kind of science experiment.

We went over to the nurses station after the appointment and within 5 minutes the nurse took the thing out. Unbelievable!! I thought this was going to be some big to do operation at the hospital weeks down the line. Didn't even feel any pain whatsoever. I sat in the recliner while she did her magic...Marjie was watching what was going on and I had my head turned waiting for some serious pain to happen. I had to ask a few minutes later if it was out or not. So this is a good thing!!!!

I think I'm experiencing some kind of acid reflux and that might be the sensation I was talking about earlier when I said I could taste my stomach in my throat. I'm taking Prilosec for it now and Dr. Atienza said if I felt that wasn't working, then he'd prescribe something else for me.

Dr. Atienza's plan is to give me about a 4 week rest period this time before we start the radiation. The radiation doctor is Dr. Sinesi who works in an entirely different office. He actually works in the Cancer treatment center for Chesapeake General Hospital. Dr. Atienza's folks set up an appointment for me to have a head, neck and chest cat scan done on the 22nd of January, and follow up appointments with all concerned are supposed to be being made today. The purpose of the cat scan is to ensure there is no other cancer showing up anywhere and I guess this will give them the green light to start the radiation. I'm not a 100% clear on all this, but once we begin with it all I'll know more and more.

Sometime after the cat scan is completed and results known, I'll be set up with an appointment to have the mask made which will be screwed down to the table holding my head in place so I can't move when they apply the radiation. From what I understand at this point, is that the radiation treatment will be for 6 weeks, Monday thru Friday, 25 minutes a day..weekends off. One of those days, probably Wednesday, I'll go back over to Dr. Atienza's office for a round of chemo. The chemo that I'll get this time is a different type then what I was getting in the past, and a much lower dosage. From what I gather, the side effects like I've been experienced from these other ones will be much less. The big issue with this second battle is going to be the radiation.

The feeding tube was put in place just for this. They say my mouth and throat will get so sore and screwed up that I won't be able to eat or drink and will have to be nourished via the feeding tube. I don't even want to think about this right now!

Goal now is to get better, and try to enjoy the next 4 weeks before I go back into battle. David and I are planning on taking the boat out and doing a little fishing and just basically try to keep my mind off what's coming up.

Right now, I'm not even at 100%...I'd say I'm sitting at 50%. Last night I began to develop a sore throat and here it is 1232 the next day and it hurts to eat, drink, swallow and talk. I'm a little worried about this and if it doesn't get better by tomorrow, I'll call the doctor and see what they have to say.

My muscle soreness/joint soreness has mostly gone away. Cracks in the corners of my mouth are getting better but are still painful and will bleed if I open my mouth too wide. Sores in my mouth are gone, sore throat now present, but the inside of my mouth is still rough and feels funny. Food tastes horrible. I'm having a hard time finding anything that tastes good. Meat and bread type products seem to be the worst. About the only thing I can tolerate right now is yogurt and Top Raman...even though the noodles taste funky. No more nausea or feeling as run down as a few days ago......So I'm healing....think it's just a matter of time now. Seems like every day, I feel better and better, so I should be good to go here shortly and be able to enjoy the rest of the month before all hell breaks loose again.

That's about it for now. My mind is mush! I started out this morning on the blog at 9am. I must have had 6 pages typed up and accidentally deleted the whole damn thing and was unable to recover anything but the title. Sheesh!!!! Took Coho for a walk and started typing again.
This version is is much different and I know I don't have all in this that needs to be here, but there's always tomorrow and it's not like I have much of anything to do anyway.

Thanks again to all for your support!

More to follow..............

Slowly recovering

2007-01-02T11:05:00.000-05:00

Holy Sh*t has this been an ordeal. This round seems to have been maybe the worst with different side effects than I've experienced in the past. As you know, I did not get the chemo drug Cisplatin this time and after the first couple days was thinking that this round was going to be alright or at least without some of the side effects that I had experienced in the past. It's hard for me to even think clearly at this point, but it must have been two days after the 3rd dose that the nausea and run down feelings began. I've spent up until today on the couch or in the bed. Still haven't puked, but have this horrible feeling in my stomach, it's almost like I can taste the inside of my stomach in my throat??? I don't know how to really explain it, but nothing sounds good or tastes good to eat; don't have much of an appetite, so I basically lay there, knowing I should eat, but unable to, horrible taste in my throat, forcing myself to drink, which by the way is difficult because everything I drink tastes like poison to me. I'm taking some anti-nausea medicine which works but makes me tired, so I end up sleeping/dozing all day. I really only feel good when I'm sleeping and dreaming, but it seams that that only happens for 15-30 mins at a time because I'll eventually wake up, look at the clock and realize I've only been out for a short amount of time.
During all this my bones and joints are getting painful. And when I say painful, I mean PAINFUL. All of them; toes, ankles, chins, knees, elbows, fingers and shoulders. We were thinking that it might be caused by lack of not moving them enough, but that can't be it, because they feel a lot better today and I wasn't moving around much yesterday either. I think it's just one of the side effects. But to give you an idea of how bad they hurt, just to traverse the stairs in the house, it would take me holding on to both of the handrails, and taking each step one at a time with both feet on the stair before I could go to the next one. Marjie would massage my joints which would help temporarily and put heat on them which also helped a little.
I guess it must of been about two days when I noticed the corners of my mouth bleeding. They are so cracked and sore it's difficult to open my mouth. This has been going on now for at least 4 days with no relief gained. I've been applying chapstick, vaseline and Carmex...nothing really seems to help...maybe just time. About that same time, I started getting some mouth sores. It looks like white stuff all over the inside of my mouth. So now my mouth feels all nasty. I've been using this mouthwash rinse called Biotene which works so so. I had my Nuelasta shot on Sunday, and talked to the nurse about the problem I was having with my mouth and she ended up having the doctor on call there prescribe some sort of mouth rinse/medicine stuff that works so so also.
So I guess the bottom line is that this has been a week of hell. I'm feeling better today. Joints are doing a lot better and it doesn't hurt to walk or move around. Don't feel nauseated, but the corners of my lips/mouth are still cracked and bleeding. I think most of the mouth sores are gone, but the inside of my mouth feels like sandpaper. Still don't have much of an appetite, but just ate a bowl of soup and it tasted ok so at least my taste buds are intact for the day.
I feel like all I'm doing in the blog today is complaining and I guess I am, but you just can't imagine how bad this sucks!
I saw this guy in the chemo room while I was in getting the pump removed last week with white cream all over his neck. He was carrying what looked to me like a popcorn bucket lined with plastic, and using it to hack spit into. The guy looked miserable, and my assumption is that he also has "head and neck cancer" and is currently undergoing his portion of the radiation treatment. Boy oh boy am I so not looking forward to that.
So here I am, recuperating slowly, feeling much better than I did yesterday and even better than the day before. Have two weeks to heal up. End of the first treatment. Radiation is next, but will cross that bridge in a couple weeks. Thanks for everyone's thoughts, prayers, comments, emails and cards. I read them all or they get read to me. They do help!
That's all for now, I'm gonna get my arm wrapped in saran wrap so I can take a shower and then attempt to take Cohomojo out for a walk.

7-6 Quick update

2006-12-30T20:12:00.000-05:00

Well here it is Saturday evening and I just wanted to get a couple of things down before going to bed. Dave is not having fun with this. The main complaints today have been achy joints - knees, ankles, hands, back - sore mouth, that feeling of something caught in his throat again, and some nausea. He did have a slight fever this evening - 99.4, so I finally got him to take two regular strength Tylenol (he can't have aspirin or aspirin based products, so I can't give him anything else). I tried to get him to take either the Phengren or the Kytril for the nausea, but he isn't too keen on the idea.

The trip to the clinic (Lake Wright office) today was fairly uneventful. Dr. Atienza's nurse, Kathy, was there today, and is keeping an eye on us. She again stressed the importance of fluids - Gatorade, Jello, soup, stuff that will keep Dave hydrated and be easy on his throat. On the way home, we stopped and picked up some Gatorade, and he's consumed about 24 oz since 2pm. The hard part is getting him to eat or drink. He did have a couple of sausage, 2 over-easy eggs and a piece of toast for dinner tonight. Then proceeded to go to bed at 7pm - he is just tired of feeling horrible.

Both his PEG and PICC are looking fine, but this is about the time that he gets a small infection with his PEG - it starts oozing more - a white to yellow snot like substance. So far it is looking good, and his PICC is looking good as well. Speaking of PICC, had a slight problem with the home care folks, and their visit schedule. Dave's PICC dressing is supposed to be changed every 3-7 days - we are on the 7 day schedule to minimize the wear and tear on his arm with the adhesive. Three weeks ago when Dave was noticing his PICC wound was getting red and had a slight discharge, we had them come out a day early - Friday instead of Saturday. This in turn was to shift the dressing change to Fridays, last week - no problems, yesterday - when we didn't hear from the nurse by 10, I called them and was told his visit was on Saturday. A few phone calls later, things were straightened out, their supervising nurse came out and changed his dressing, and ensured us that he was scheduled for Fridays. Of course all of this compounded with Dave's current disposition, made it an enjoyable Friday in this Vigal's household.

Well - so much for a quick update...I'm still sticking with the mantra of one day at a time, and tomorrow will be better. Take care and stay safe as you finish out this year and bring in the next.

Day 7-6

2006-12-30T10:01:00.000-05:00

Well here it is Saturday morning, and I figure I had better give everyone an update. Although this round started out easier then the previous two we are back to the low point again. Treatment started on Tuesday (7-2), and since he still had the ringing in his ears, no Cisplatin, so we were out of the clinic before lunch. Wednesday (7-3) Dave felt fairly good - as you have read - went to the mall with David, and ended up installing the four new light fixtures we got for Christmas. Thursday (7-4), Dave started the day out fairly well at 0500 since I had to go to work again. He and David took back the lamps that we decided not to use and then by the end of the day he started feeling a little run down. Yesterday (Friday and day 7-5), Dave spent the entire day on the couch, really just feeling achy, very grumpy, nothing was right and as the day progressed he really didn't feel any better. His mouth is getting sore, his joints hurt, and nothing seems to go right. Woke up this morning feeling pretty much the same, although the corners of his mouth are getting chapped. I am going to try to really push the fluids hard today. The good news is that we are heading to the clinic this afternoon to turn in the pump, then tomorrow the Neulasta shot, and we're back on the road to recovery.

The hardest part is keeping Dave's spirits up. Days like yesterday and today, just wear on his psyche. Feeling and thoughts like is it really worth it? Is the pain, the hassles, feeling really sick really worth it? Of course the answer is yes to all, but to keep him in a positive mindset is hard, when he really doesn't want to go through this.

This morning has been a slow morning - tried to get Dave to eat some breakfasts (I made some "Savory Breakfast Pudding" recipe by Emril - sounded good - bread pudding with meat and cheese) which didn't appease his appetite, so ended up making an Orange Julius and that seemed to go over fairly well. Sticking with the theme of any thing liquid today.

Overall, it is still one day at a time. I know that tomorrow will be a better day for Dave, just have to get him through this one. Well I've got a couple more chores to finish this morning before heading to the clinic. Thanks again for all your prayers and support, Dave will be back up writing in a day or so. Take care.

7-3 Day

2006-12-27T20:03:00.000-05:00

Woke up last night just after midnight after a cough that was like a VIRP (Vomit/Burp). It was really weird, I just coughed real hard, got a vomit taste in the way back of my throat and thought I was going to throw up. Grabbed my Chemo bag, jumped out of bed and made it to the bathroom in less than two seconds. Held my head in the toilet and coughed numerous times but never got sick. Laid on the floor for about 15 mins and started feeling like it might want to come out the other end. Nothing! Made it back to bed, but my throat was burning with the vomit taste that I just couldn't get rid of. 2 hours later I experienced the exact same thing. Never got sick but just a burning taste in the back of my throat. Back to bed and slept with no more issues. Got up at 6:30, took a shower, brushed my teeth and gargled with some mouthwash and started feeling pretty good. Not really sure what caused this episode, but haven't had it start back up yet.

I'm actually feeling pretty good today except for the fact that where my feeding tube goes into my stomach, the muscles around it are extremely sore from all the coughing. I really think that that Cisplatin was/is the major cause of the ill side effects that I have been feeling in the past and by not getting it this time, it's causing me to feel much better this 3rd round.

Marjie went to work around 7:30 this morning, I sat on the couch drank coffee and watched the news till 9am when I woke up David so we could go to the mall and do little shopping. David and I spent the entire day shopping, getting some lunch, and hanging 4 new light fixtures around he outside and inside of the house. Ate a good chicken dinner and tasted it without any unpleasant tastes.

Time will tell, but after 36 or so hours since I got my 3rd round, I'm doing pretty darn good. My ears are pretty much good to go, very slight ringing in the ears. I'll discuss all this with Dr. Atienza next Wednesday and see what he says. Maybe it will be ok, or maybe he'll want to give me another dose of that Cisplatin. Just gonna have to wait and see.

That's it for now! More to follow!

7-2 Day

2006-12-26T12:40:00.000-05:00

3rd round of Chemo started today. Marjie and I arrived at the Oncologist at 7:45 this morning. Nurse drew some blood and checked it for platelets which were apparently down the last time they took blood. Actually, the last time they checked blood it was only two days after my Nuelasta shot which was right after the 2nd round of chemo. Anyway, platelets looked good so they began preparing for the dose of chemo. I mentioned to the nurses that Dr. Atienza told me that if I still had ringing in the ears or other issues with my hearing that he was not going to give me the Cisplatin this time. Since I do have a slight ringing in the ears, I advised he nurses. They read the doctor's notes and said that they were not going to give me Cisplatin.
Started off with the Aloxi (anti-nausea), then to the Taxotere and finally to the Flourouracil (5FU). This procedure only took about 3 hours instead of the usual 7-8 hours that we had been used to. Not getting the Cisplatin this time meant not getting 3 other IV fluids which really cut down the time there.
One of the other pluses about not getting the Cisplatin is that there is a good chance I'll feel much better this week instead of so lousy like I have the other two times. We found out from the nurses that the Cisplatin really causes a lot of nausea and of course the ringing in the ears deal. So we'll see as the hours tick away on how I feel.
The downside about not taking the Cisplatin is that I'm not going to get all the Chemo that the doctor originally planned on. Dr. Atienza and the nurses said not worry....but I am!
Obviously, since this is getting updated, I'm home. I feel good, not nauseated, still have an appetite and taste buds are working good.
Hope everyone had a nice Christmas. We sure did. We spent Christmas Eve with our good friends the Reeves up in Stafford, VA. Brought back some great memories of holidays spent together with them in Guam. Christmas was enjoyed with Marjie's brother, George, and her sister and brother-in-law, Sarah and Aaron. We enjoyed a classical Vigal holiday dinner - prime rib roast. Marjie has got the roast down, and complimented it with garlic mashed potatoes, green bean casserole, rolls and a jello salad.
That's about it for now, we'll see how the 3rd round works.

6-5 Day

2006-12-22T17:41:00.000-05:00

Had a doctor's appointment with Dr. Debo this morning for a basic check-up and to make sure all was well. Since he's the ENT doctor, we talked to him about the issues I've been experiencing with my hearing. About the only symptoms I'm having now is a slight ringing in the ears. He basically looked in my ears, cleaned out some wax, and had the audiologist run a hearing test. Tests showed that my right ear is within specs, but I have a loss of high frequency in my left ear. This had already been noted when I had a hearing test done by the VA when I retired from the Navy. I'm gonna try to get the results from the test I had earlier and get them to Dr. Debo, so we can establish some kind of baseline to see what if any loss has occurred since I started the Chemo treatment.

That's about all we can do about the hearing issue right now. Not sure if I'll still get the Cisplatin on Tuesday or not.

PICC line dressing got changed this afternoon and is looking much better.

Food is tasting better and better so I'm trying to enjoy it as much as possible since I only have a few more days left.

That's all for now!

6-3 day

2006-12-20T18:49:00.000-05:00

Quick post tonight. I'm feeling tons better. Most of the side effects have subsided greatly. Taste buds much better and most things are tasting pretty good. Still have a slight ringing in the ears, but have an appointment with Dr. Debo on Friday, so I'll have him take a look and then whatever he says, I'll relay to Dr. Atienza so he can make a decision on whether or not to give me the Cisplatin on Tuesday.

Went to Dr. Atienza's office this morning to have his nurses look at my PICC line. They both took a look and said that it looked ok. Actually, the redness around the insertion point has subsided a little, but there is a little dried puss I can see under the bandage that was worrying me. The nurses said if the red ring got bigger and/or sore and I developed a fever, then I should have it looked at again.

So with all that, things are going good...looking forward to enjoying some Prime Rib Christmas night.

5-7 Day

2006-12-17T17:02:00.000-05:00

It's been a few days since I posted, so I figured I'd better get this thing updated. Have been feeling pretty good for the last few days and a lot of the nasty side effects have subsided. A few are still here and bugging me.

My tastes buds seem to still be out of whack. Food is tasting better than it did a week ago, but things still aren't like they're supposed to be. Meat doesn't seem to have the nasty metallic taste, but for some reason things just taste bland and no matter what I do, I can't improve them. We bought a bag of pistachios at Costco yesterday. I ate some this afternoon and couldn't even taste the salt on them. They tasted very bland and totally unsalty. I don't what's going on...seems like I have an issue with salt and not being able to taste it for some reason.

Other issue is that it appears my PICC line is getting infected. This has been ongoing for almost a week now with no improvement. Friday night I was having a lot of pain shooting up and down my arm and around my armpit where the PICC line goes in. Seemed better Saturday so we just have been monitoring it over the weekend. I'm calling the nurse at the Oncologist tomorrow morning and hopefully they'll want me to come in and have a look at it. I've been taking antibiotics for the the last 7 days for the infection around the feeding tube, but that doesn't look any better either.
My stomach is a little sore about 6 inches all around from where the tube goes in, and that is also bothersome.
I tell you what, this stupid PICC line and Feeding tube are major pains in the a$$. This treatment can't get over soon enough for me.

Ringing in the ears have subsided a little, but it seems that instead of it coming and going with real noticeable changes, I now just have a constant, not as loud as before, but a constant ringing in the ears. I don't know what the doctors are going to do about it. I talked to Dr. Debo's (ENT doctor) nurse about it Friday and was informed that the doctor was advised, and if he wanted to see me prior to my scheduled appointment on the 22nd, they'd call me for an early appointment. So far nothings happened.

Other than that, things remain the same around here. I'm getting sick of sitting around here all day with not much to do, but whenever we go out and do something, I start to feel tired and not very good after a while, so I'm trying to keep busy here...lots of short walks with Coho I guess.

Glad to hear my buddies in Washington finally have power back after that storm. With all the fallen tress in the area, JR shouldn't have to worry about firewood for a long time.

14 December 2006, Oncologist Appointment

2006-12-14T08:40:00.000-05:00

Had a follow up appointment with Dr. Atienza yesterday, he's my oncologist. This was basically just a routine appointment to see how I was recovering from the chemo and to check my white blood cell count. We got to the appointment on time, but ended up waiting for an hour and a half to finally get seen by the doctor. Guess they had some walk-ins and just got behind during the day. The nurse took a couple vials of blood and by the time we finally got to see the doctor, we forgot to get the white blood count from him. I'm currently waiting on the place to open up this morning so I can get that information.

The appointment went good. I did most of the talking and Dr. Atienza did most of the listening. I basically reiterated how I was feeling and how I felt right after the treatment. We discussed some of the side effects I've been experiencing and he was concerned about the issues I brought up in regards to my hearing. I've been getting some ringing in the ears for about the last week and certain noises/sounds have changed. It's hard to describe what's going on, but things like the beep on my GPS unit really bothers me when I drive now, and talking on the cell phone with the ear bud is bothersome, and yesterday, when I was at the store, all the background noises really seemed weird.
Anyway, he seemed pretty concerned about those issues and wants me to keep him informed over the next week to see if any other changes in my hearing happen. He suggested I talk to Dr. Debo, the ENT doctor and possibly schedule a hearing test this week. He also said if the ringing in the ears doesn't clear up by the 26th of December, then he was not going to give me the Cisplatin chemo during my next session. He said that one of the side effects associated with taking the Cisplatin is that the nervous system can be affected and ringing in the ears or difficulty hearing high pitched sounds can occur. He says that not giving me the Cisplatin wouldn't be detrimental on my progress as I've already had two doses of the stuff and that during the radiation therapy I would be continuing to get chemo therapy once a week during that process. About the only good thing associated with the radiation therapy is that my chemo dose will go way down. He said that during that portion of the treatment, I would not be getting the same chemo that I'm receiving now and instead of it taking 8 hours to get all the chemo, the lower dose he would be giving me would only take about an hour to get.

So what I got out of all that is that if I'm still having issues with my hearing, I won't get the Cisplatin this time. Not getting this next dose of Cisplatin shouldn't have too much of an effect on me getting rid of the cancer???? Does that make sense?

We also noticed where the PICC line goes into my arm, there is some redness and a little bit of discharge that's appeared in the area. This was very concerning to me because of the fact that this PICC line bandage MUST remain sterile. If it gets infected, I could have serious issues due to the fact my immune system is down and t that the other end of the line goes into the large vein just above my heart.
Since Dr. Hollis, the PEG doctor had placed me on some antibiotics for the same issues I am experiencing with the feeding tube, Dr. Atienza decided to "lets do a wait and see" thing and see if the antibiotics I'm taking might clear it up.
If no results by Monday, I'm to call him.

Marjie and I decided to go ahead and call the home care people and see if they could come out today and change the dressing instead of waiting till Saturday when it's scheduled to be changed. I'll feel better if that happens and for a nurse who works on these things to get a good look at it.

Other than that, Dr. Atienza thinks things are going well with my treatment and says that 95% of the stuff I'm telling him is to be expected. He's seems like a very good doctor to me and has made it known to both of us that if we want to try other types of nausea medicine or mouth sore medicine or diarreaha medicine that there out there and if I don't feel like I'm getting the results with what he's given me that we can try other alternatives. Sounds good to me, seems like things are working ok. I haven't thrown up yet, and the nausea medicine makes me tired, but maybe that's a good thing.

That's about it for now, I need to call his office and get those white blood cell counts, reschedule an appointment with him, call Dr. Debo about the hearing stuff, call the home care people and then mail some packages off.

Take care out there and thanks for all your prayers and well wishes!

12 December, 2006

2006-12-12T19:45:00.000-05:00

Don't laugh too hard!

Not much to update tonight. I'm feeling better and better and the nausea is all but gone. Went for a long walk with Coho which did me good. Weather has been awesome around here for the last week and since it's supposed to rain a little tomorrow I figured I should take advantage while I can.
Changed the name of the blog and decided to post another picture to document the changes in me.

Re-read some of my older posts to compare how I was feeling after the 1st round of chemo compared to how I'm feeling after this round and was astonished how different it was this time. Guess it goes to show that you cant' expect it to be the same with each dose.

That's about it for now.

11 December 2006

2006-12-11T17:55:00.000-05:00

Wow! Do I ever feel better today. Marjie had to go to work this morning and take care of Department Head stuff and submit the paperwork for the HUMS transfer, so she figured she'd get up at 0400 and head out the door by 0500. I had been tossing and turning most of night and had woken several times with bouts of diarrhea, so I went ahead and got up with her. Had about a half a bowl of oatmeal and some grape juice which went down fine and my stomach was actually feeling a little better. Made some coffee later in the morning and that also seemed to work just fine. Ate a half of a chicken sandwich and some yogurt later, then had a tuna fish sandwich and some chips later on.
One more bout with the diarrhea and now my gut seems to have calmed down. Time will tell, but I figure, now that I've been able to get some solid food in my stomach, and the Nuelasta shot is working, maybe this diarrhea crap will be over or at least contained to once a day instead of 6 o 7. I know this is probably TMI (Too much information), but I'm telling it like it is.

Other side effects I'm experiencing: Ringing in the ears! Big time! Seems it comes and goes all day long. It just kind of starts and goes on and on. Stops and starts again? I've also noticed some changes in my hearing??? Hard to describe, but some noises are just different and really bother me. More to follow on this as I'll be monitoring this closely.
Another is a really funny feeling in my mouth. The roof of my mouth feels like sandpaper as well as the inside cheeks of my mouth. My taste buds almost went back to normal a week or so ago, but now seems like things are tasting funny again. I have to ask Marjie and David how things taste just to make sure it's not me thinking something tastes funny.
As far as how I feel on a scale of 1-10, I'd say I'm up to a 6-7 right now. Definitely have more energy and really haven't felt too nauseated for most of the day.

Had another doctors appointment with Dr. Hollis to check on the feeding tube. Marjie and I have noticed this past week that I'm getting some more drainage/snot looking stuff on the bandage when she changes it. We think, this might be caused by the chemo drugs that I'm getting and possibly it's getting a little infected. Dr. Hollis looked at it this afternoon and didn't seem too concerned, but went ahead and put me on another batch of antibiotics to combat it. He prescribed a different drug this time called Levaquin and I'm supposed to take this for 7 days. He also wants us to not put the bandage on and see if a little air might help it out????? He told us what to look for as far as an infection and sent us on our way with another follow up in a month if all clears up. Guess we'll see!

Went back Naval Hospital to get the prescription filled....thought I learned my lesson last time....there were 50 people ahead of us and it was going to be at least an hour wait....screw that! Left there and went to the civilian pharmacy, got the prescription filled as well as another dose of the Emends since we were already there. 15 minute wait here so we sat in the little lunchroom there and I ordered a grilled cheese sandwich. Didn't quite taste like I was expecting, but at least I ate it and didn't feel sick.
That's about it for now, not much else going on, just trying to deal with this situation and get healed.
Marjie is back to work for the time being but able to leave work around noon so as I see things, it shouldn't be a problem with her going to work and taking care of Navy business and then coming home in the afternoon to help me out. Hopefully this HUMS deal will pan out for us.
Thanks again for everyones support and prayers. They are much needed.

Sunday Night

2006-12-10T17:15:00.000-05:00

Well I'm back! Barely. Thanks to Marjie for keeping this blog going. If it were up to me you all would have been in the dark for the last week. This has absolutely been the roughest so far. I haven't had the energy to even get up off the couch and have spent most of the days sleeping and being queasy. Went for a walk this morning which did me good. Felt good to stretch my legs, but after the walk spent the rest of the morning and afternoon dozing on the couch and watching football. This round has posed many changes such as even less energy then before, weird tastes in my mouth, more queasiness and it seems like everything tastes awful. Water even tastes like poison sometimes. Meat is almost out of the question...just had my first today.....Uncle Dick, thanks for the suggestion on using plastic utensils, they seem to work better than the metal forks and spoons...I've finally begun to eat a little bit. Had some macaroni and cheese and tried some mashed potatoes and gravy. Both went down ok and tasted alright. I've lost about 8 pounds this week, but seem confident that I'll be able to get back to normal this week.
So here it is 5:26 and watching the San Diego game and finally not laying down on my back. I'm actually sitting on the couch and feeling a ton better than this morning.
Jane Jett, thanks so much for card, it's nice to know someone who's been there!
Thanks to ALL for your comments and prayers. I need em'.....and last but not least, if weren't for Marjie, I don't think I'd be able to do this.
That's all for now.

Dec 10 - Sunday

2006-12-10T09:21:00.000-05:00

Good morning to all, it's Marjie again. Just as I had started writing a blog for yesterday morning - Dave got up and I thought that he would have the energy to update it. As we can tell - he did not. He is doing better. Friday, we had to go to the Lake Wright office to turn in the IV pump. Dave was feeling like crap - really very little energy, nauseous, achy, but very glad to get the pump removed. The nurse there gave us another medication for the nausea, Kytril. To take one tablet every 12 hours to control the nausea, and shouldn't make Dave feel funky and tired like the Phenegren does, and Dave really doesn't seem to like taking the Phenegren. The bottom line is that it was good to get the pump off - no more sidekick or pump whirl every 90 seconds. Even though it was hard for Dave to get out and move - it actually did him some good. He did go to bed early though - 1930, and ended up sleeping until almost 0900.

Yesterday (Saturday) was better - still nauseous, achy, and tired, but it seems to be subsiding. Went in for the Neulasta shot, again Dave still not quite up to par. We talked with the nurse again, and she brought to light a couple of items. 1) He needs to get between 10-12 cups of fluids a day (we've been in the 8 range) - this will do two things, help to flush the drugs through his system, and keep him hydrated (which will keep his energy level up). 2) The nausea is most likely from the Cisplatin and Taxotere he got on Monday, and that the metal taste in his mouth is from the Five FU. It was nice to get again which symptoms are associate with which drug.

Overall things are improving - Dave is moving more and more..hopefully he'll update this today. David and I are headed to the commissary - so Dave gets a couple of hours to himself. Thanks again for all the comments and emails. God Bless

Dec 8: Day 4-5

2006-12-08T06:29:00.000-05:00

It's Marjie again and early Friday morning. Thanks again for all the comments, emails, and thoughts, I've been reading them to Dave since he hasn't had the energy or desire to sit down to the computer or play on the laptop. Dave had another rotten day, yesterday. I can't say that it will be our worse, because I am not looking forward to January, but pretty much, he is miserable, and thus grumpy. Still has the nausea, fatigue, aches and is constantly wondering is this really worth it. Of course the answer is yes - but it is hard when you are going through it. I think that I am going to have to do a little more research on ways to combat his symptoms for the next round...spending 4 days on the couch feeling miserable is not the way to do it. On a good note, it is Friday and we get to turn in the pump this afternoon, he gets the Neulasta shot tomorrow, and then we are clear until after Christmas. It's my chance to get him back whole and strong again - physically and mentally. I wish he had an indoor hobby that would distract him for dwelling on his symptoms. We'll find it - other than complaining, although I should know that if he is complaining then things should be alright. Thank the Lord, that this is only temporary situation.
Overall David and I are still pressing on with other things. David finished all his college applications last night, so all we have to do is wait for their response, and file our financial aid application right after the new year. I am about done painting the shower portion of the master bath - was working on the trim yesterday, when I had to stop to wash Coho. Since Dave changed the shower head in the shower, washing the dog is not that difficult, just still a little messy - dog hair and water almost everywhere. So had to do a little cleaning, and I'll finish it up this morning. Well the sun and David are about up, so another day begins in the Vigal home. Take care, and God bless.

Dec 7 - Update by Marjie

2006-12-07T06:49:00.000-05:00

Well here it is early Thursday morn of our 2nd round of chemotherapy and Dave has not had the energy or the stomach to update the post. He has been feeling miserable these past few days, taking this round of chemo harder than the first, but actually it is to be expected. Nauseous, no energy, achy, just an overall sick feeling and as it continues he gets crankier and more critical of everything - the clutter, the dirt, the smell of the dog, which blanket he is using - so we are having fun. On the positive side, he is eating. Yesterday's consisted of cinnamon toast and orange juice for breakfast, toast and ham for lunch, and chicken, mac & cheese, and garlic bread for dinner (he left the veggies on his plate), had a couple of Popsicles and a chocolate milkshake for snacks. Not the most nutritious, but as long as he continues to eat we are doing well.

The NASHVILLE returned to Norfolk yesterday, so I had to reluctantly leave Dave by himself for a couple of hours until David got home from school. I checked back in off leave, talked with the CO and XO, and met and talked with the new CO (Change of Command is next Wednesday). Over all consensus is that I should probably put in for a HUMS (temporary duty for humanitarian resons), and looking over my duties, there is going to be too much conflict between work and taking care of Dave, especially on weeks like this one. And I don't need to split my loyalties, when the Navy has programs like HUMS to help, and actually the HUMS is written for just our type of situation - short term (less than 6 months) that can not be fixed with just emergency leave. I have to go back to work on Monday to start the process on the ship. We have already submitted the paperwork for Dave to be in the Exceptional Family Member Program (EFMP) and now I just have to submit my letter of request, and call my detailer again. Overall it is best for all parties - I get the time to focus on Dave and the ship will get another Operations Officer. Once Dave is through the treatment and on the mend, I'll get assigned to another ship as a Dept Head for 12 or so months. I will end up with three short (9-15 month) DH tours vice the traditional two 18-month or one 3yr, and since I am ahead of my year group, by over a year, there is no negative career implications to this 6-month hiatus.

Back to Dave - Even though he is pretty much down for the count for right now, his brain definitely isn't and David and I get to take care of all the other little things that he would like to do or thinks that needs to be done. He keeps us hopping.

Speaking of David, he has been the perfect son, extremely helpful, up beat, and doesn't complain a bit. David and I are finished up the Christmas decorating last night, primarily finished decorating the tree and rearranged the Christmas stuff to minimize the clutter. New house, higher ceilings, different nooks and crannies, definitely a challenge to get things right, or at least acceptable to Scrooge. First challenge was the Christmas tree height - an 8 ft tree in a room with 10-15ft ceilings looks a little small. So with a little improvising, a couple of boxes, and a white sheet, made a nice hill for the tree to stand on, now the tree stands at 10 ft, a much better fit to the room. So last night we finished with putting the ornaments on it, and I think we are done in the living room for Christmas - on to the dining room.

Well, the sun and David are now up, I need to close this to eat breakfast with my baby, and get a couple of things (floors, laundry) to take care of before Dave gets up. Hopefully he will feel like updating this with his own thoughts, mine are just observations. As always, thanks for the thoughts and prayers, we are taking this one day at a time. Smiles :)

04 December 2006, 2nd Round of Chemotherapy

2006-12-04T17:02:00.000-05:00

4-1 day. Just got back from getting the second round of Chemo this afternoon, so I'm going to keep this one short as I'm feeling a little nauseated at the moment. The chemo went good I guess. Arrived at the Oncologist at 0915 this morning and and after having my blood drawn and checked for white blood cells, which were back in the high range, I started my 2nd round of chemotherapy. 6 bags of IV fluids in a 6 hour period. Started with Aloxi which is the anti-nausea medicine, then a bag Saline for hydration, then a bag magnesium, then the chemo medicine Cisplatin, followed by the other chemo medicine Taxotere. Finished all that around 4pm, then the nurse hooked me up to the pump which will dispense a bag of Fluorouracil 5FU over the next 5 days.
All in all, I guess I'm doing okay. Like I mentioned above, I'm feeling a little nauseated right now, but have a couple pills I need to take later this evening and more to take over the next couple days to help deal with that.
Time will tell on how I'll be feeling.
The office where I get the chemo is pretty nice. They have a bunch of Lazy Boy leather recliners to sit in and a nice view of the woods to look at while your hooked up to the machines. I spent the day reading magazines and listening to music. Marjie was able to be there the whole time which is really nice. Ate McDonald's for lunch...figured I'd better since food is tasting good right now
I purchased a set of Bose quiet comfort2 headphones a week ago to listen to my MP3 player with because the ear buds I had been using were really hurting my ears after a while. What a difference those Bose headphones make. If anyone out there is in the market to replace their headphones, I definitely recommend the Bose Quiet Comfort 2 headphones. They cost a pretty penny, but after listening to them for 4 hours today, I'd say they are worth every penny. Now all I need is a 30gb video iPOD, but will have to see what Santa says about that.
That's all for now.....More to follow.

02 December, 2006

2006-12-02T07:34:00.000-05:00

Had a follow up doctor's appointment with Dr. Debo yesterday. He was the surgeon who did the surgery on my neck back in October. He's kind of coordinating this whole thing and has taken a sincere interest in what's been going on in my treatment. I saw him two weeks ago when I was feeling run down, so it was good to see him yesterday when I was feeling pretty good.
Marjie and I noticed a bump on the end of the scar that had a white scab like thing on it and we weren't sure what it was. We suspected it might be a ingrown hair or something. I picked at it and Marjie went after it with tweezers, but it hurt and we didn't' get anywhere, so I decided to have the Doc look at it. Good thing! It turned out to be the end of a stitch with a knot that somehow got pushed to the surface and ended up not getting dissolved like it was supposed to. Good ole Dr. Debo snipped the thing right off without hardly any pain to me and the bump is gone and the scar is good to go now. In fact, you can hardly even notice the scar on my neck anymore.
I had been experiencing a sore throat in the evenings last week and this week it's all but gone, but since he's a Ear Nose and Throat doctor, who better to ask than him. I was concerned because the symptoms I was experiencing were not the same as if I was coming down with a cold or something and I thought it might be an issue with my tonsils due to the chemo treatment. Basically, the sore throat would go away during the day and come back in the evenings. Dr. Debo said that he wasn't too concerned about it and explained something about how your body produces less of something in the evenings which would possibly explain the sore throat and more of something during the days...blah blah blah......Bottom line, he's the doc and I'm not. He looked all around my mouth and throat then sent the scope up through my nose and down my pipes to look all around. This is the same procedure he did when I first visited his office. He took a few pictures of my vocal cords and looked all around with the camera and said all looks well.
So that makes me feel much better. Good check up with him.
I'm feeling pretty good these days...still get a little tired as the day goes on, but a short nap gets me back on track. My taste buds seem to be getting back to normal over the last couple days and since I go back for another round of chemo on Monday, I told Marjie I wanted steak for dinner last night, ribs for dinner tonight and chicken fried steak for dinner Sunday. Figure I should eat all the meat I can while it taste good. Hair kind of quit falling out for the time being. I shaved my head as you all know, so that's not an issue, but I still have a mustache...kind of....it's very thin but still hanging on. Still have the rest of my body hair but think it's thinned a little. I can't pull any of it out like I was able to pull the hair out of my head and mustache last week. Maybe what I have left will stay. Who knows. Still have eyebrows and eyelashes. My facial hair has really thinned. I only have to shave every 3-4 days instead of every day like I'm used to doing.
I guess that's about it. Monday starts another round of chemo that I'm not looking forward to except it's one day closer to recovery.
Again, thanks for all the comments in the blog and your emails and cards. Much appreciated.
Happy Birthday to my daughter Jennifer...25 years old! Where has time gone.

29 November, 2006

2006-11-29T09:22:00.000-05:00

3-3 day,
Not much new to report for the last couple days. Figured I'd make a post so at least when someone opens up the blog, my mug isn't the first think they see.
Mustache is still hanging in there...literally!!
David thinks it looks funky and I should just whack it off, but this baby's been on my lip without being shaved off since 1986.
Marjie and David have never seen me without a mustache.
All the black hairs that once graced my lip are gone and just a few straggly gray ones are left....
I'm keepin it for as long as I can!!!!
As far as the bald head, I'm getting used to it. One nice thing is showers. Get to skip a step in there.
That's it for now....More to follow. For all my RM/ET buddies...I'm ZKL as a Pickle.

Dave's Bald Gourd

2006-11-26T17:53:00.000-05:00

As you can tell I'm now bald. Picked up a nice POW Dew rag at the Harley Davidson shop yesterday to cover my gourd. I now fit in with my hunting and fishing TIMBUCKTWO buddies JR and Rick. They both have been saying for years that grass doesn't grow on a playground, bald is beautiful and something about making U turns under the sheets or something!!!
But anyway, got up this morning and while showering noticed more and more hair falling out of my head and clogging up the drain so decided to go to the base and get a buzz cut. If I didn't get it cut today, I honestly don't know how much longer I'd be able to hang on to the hair that I had left. It was bugging me knowing that it was just falling out in hunks and I didn't want to look like I was molting so.....whacked it all off. My mustache is barley hanging on and figure I might get another day or so out of it.
I've also been experiencing a sore throat in the evenings for approx. 4-5 days. Starting to get a little concerned. Don't feel like I've got a cold or anything, but it is definitely something I'll discuss with Dr. Debo, the ENT doctor on Friday. I hope it's not something going on with my tonsils????
Other than that, things are going ok. Sense of taste is still AFU...Meat is the major issue and has a metallic taste to it. Potatoes and such also have a funky taste, but vegetables seem to taste ok. I still eat normal and haven't quit eating anything.
I've re-read all pamphlets on the drugs I'm taking and the symptoms you can experience, and two of them talked about hair thinning and loss after the first two to three weeks of chemo. All of the medications recommend drinking plenty of water (6-8 glasses) a day. This is something I've been remiss on, so I'm back to carrying around a water bottle and trying to get plenty of it in me.
Appreciate all the support everyone is giving my with their comments and emails. Keep em' coming. I look forward to reading them each day.

25 November, 2006 "FALLOUT"

2006-11-25T10:03:00.000-05:00

I guess it's to be expected, but this morning as I was getting ready to take my shower, I was looking in the mirror at my mustache thinking I might trim it up a little bit since it was starting to hang down over my lip. I noticed a couple hairs just kind of sitting there as if they were an extra half inch longer than the rest. I pulled at them and started examining my mustache more closely and found out if I grab a finger full of hairs, I can pull them right out....I started tugging on my mustache and hairs pull out with ease. I then did the same with the hair on my head, and same thing.
To look at me now, you wouldn't be able to tell anything different than normal, but after experimenting a little, I can't pull not hunks yet, but can pull out numerous strands of hair out of my head and mustache with ease. Tried pulling some chest hairs and other hair on my body, but it that hasn't started yet. I noticed about 7 hairs on my deodorant stick after applying it.
So I guess the hair falling out thing is upon me.. I was hoping that I wouldn't be experiencing this aspect, but NOT! This is going to suck.
The picture was taken this morning just for documentation purposes..No noticeable change yet. More to follow.

22 November 2006

2006-11-22T17:32:00.000-05:00

Today we had an appointment with Dr. Atienza during the middle of a powerful storm..check out some of these photos "Nor'easter" that moved through the area today. With 3.44" of rain today, it took Marjie and I 1.5 hours to drive the normal 20 minute drive to the doctors due to flooding. We got detoured 3 times...Boy oh boy does this place have some flooding problems when there's a lot of rain and the tides get high. Lost power for a few hours this morning, but things are getting back to normal this evening.
Now results of the appointment.
White blood cell counts are not high, but Dr. Atienza said that they were within normal ranges. We talked a lot about how I was feeling and what were some of the side effects of the chemotherapy that I had been experiencing. What it basically came down to was that I experienced a great deal of fatigue, but other than that, he's happy with the results so far.
There's a change to the plan however. This initial round of chemo, that we thought was going to be two doses, each followed by two weeks off, has now been increased to three doses. Dr. Atienza explained to us that after further reviewing his notes and the study on this new theory, that we are looking at three chemo sessions vice the original two before we start the radiation/chemo punch. The focus is to totally get rid of the cancer.
So here is the revised plan:
Got my first dose of chemo last Monday, carried the pump which injected more chemo slowly over the rest of the week, got the pump taken off on Friday, got the Nuelasta shot on Saturday, have two weeks off which I'm currently on the first of the two weeks off.
Next, I go back on the 4th of December for another fun filled day of getting the chemo, take the pump home and carry it for the rest of the week, go back Saturday for the Nuelasta shot, then two more weeks off.....
Go back the day after Christmas for the 3rd dose of chemo and so on.....after those two weeks off we will begin the 7 weeks of chemo/radiation therapy - the middle of January.
That's about it for now...I'm feeling ok today. Sense of taste is still all screwed up. Had a chicken sandwich for lunch today, that should have tasted awesome, but it was a great disappointment....
Hope everyone has a Happy Thanksgiving!

21 November 2006

2006-11-21T15:36:00.000-05:00

2-2 day.
First of all, a very special thanks to our friends the Reeves, who live here in Virginia. Marjie and I were stationed with them back in 1987 at NAVCAMS WESTPAC GUAM. Bob and Steph sent me a package that I received this morning in the mail with 5 Yellow bracelets from the Lance Armstrong Foundation. The Lance Armstrong Foundation believes unity is strength, knowledge is power and attitude is everything. They provide the practical information and tools to help people affected by cancer live life on their own terms. There was a note from Bob saying that they hope things are going ok for me and to Hang in there! You'll kick it's ass! They are each wearing one of bracelets as I, Marjie and David.
Thanks so much!
I checked out their website this morning and it's packed with lots of good information.
If anyone is interested, here is their link: LIVESTRONG SurvivorCare
In the last week I've received emails, posts to my blog and cards from friends and family that have been truly amazing. I should probably thank each and every one of you separately, but figure that I'll just take care of it in this blog. Your comments mean more to me than you will ever know. THANKS to all of you. You know who you are.
Back to what's going on. Things are so so today. The feeding tube they put in me doesn't look infected or anything, but hurts like crazy. The pain feels like it did a day or two after the surgery and I'm having a hard time walking around without being all hunched over. When Marjie changed the dressing this morning, she noted that there was less puss on the bandage than had been there the day before, so it should be healing up and not getting worse. I started taking antibiotics yesterday evening for this, so hopefully things will start to get back to normal. I still can't figure out why the tube is causing me so much pain, but I'll have to deal with it and see what happens over the next few days.
Nausea is still at bay and my taste buds remain screwed up. Other than that, things are the same.
Went to the commissary with Marie early this afternoon to pick up last minute stuff for Thanksgiving and by the time I was finished pushing the basket through the store,
my gut was in so much pain all I could think about was getting back home and relaxing on the couch.
So here I am, updating the blog and watching Saving Private Ryan on HBO. Stomach still hurts like hell, but tomorrow is a new day. I have an appointment with Dr. Atienza, the Oncologist tomorrow morning to get my white blood cells checked and to see how everything else looks as far as bloodwork goes.
More to follow.

20 November 2006

2006-11-20T16:22:00.000-05:00

2-1 day. Just a reminder for anyone reading this blog. I'm doing this mainly as a living document for me as a way of tracking what's going on with me, to friends and family that want to keep up as to exactly what's going on with me IRT this cancer treatment and maybe even more importantly, to anyone who might find themselves in this situation and wants to know what to expect.
I sometimes wonder if I'm putting too much information down or not enough or if it's just senseless BS that nobody really cares to read or know about in the first place...
Who knows!
Anyway, like I mentioned it's 2-1 day. That would be 2nd week, 1st day.
Feel ten times better today than I did a few days ago. The nausea is gone and the extreme exhaustion is gone. I think some of the side effects that I've been reading about are starting to kick in though. I keep telling myself that it might be in my head, but after several days of experiencing them, Marjie and I feel that it is the side effects of the Chemo therapy.
Weird taste in my mouth!!! It seems like my taste buds aren't working as they should. Things don't taste as good as they normally do. For instance, during the football games yesterday, I had a craving for a chili cheese dog. We went to Walmart and bought the 33 cent can of chili for chili dogs, boiled hot dogs, warmed the buns, and put melted American cheese on top with some onions. To me, that's the perfect chili dog...It was good, but just didn't taste quite right. Burger for lunch today...still not right, gum isn't right, Coke isn't the same, everything seems like I need more salt added to it, but it still doesn't make it right.
My tongue feels funny and the inside of my cheeks feel coarse. No sores in my mouth though. I've been reading up on "dry mouth" which concerns me greatly and is one of the side effects of radiation, which I haven't done yet, but have bought a couple products that I've read about on the internet to see if they might help. The dentist recommended rinsing with ACT fluoride rinse...did that, but think that it might be an issue later on due to the alcohol in it. We bought a product today called "Biotene". Actually we picked up a bottle of the mouthwash and a bottle of Biotene oral balance dry mouth moisturizing liquid. Check the website out if your interested. Haven't tried it yet, but will report on it later. Anyway, the mouthwash is a mouthwash and the other stuff comes in a small bottle and says to squirt directly into mouth several times daily, whenever relief is needed.??????? Guess I'll find out.
Saw some other stuff there that I might try: Salivart
My mouth isn't grossed out or anything yet, but as of today, it feels different and my tastes have gone out the window. Something I'm hoping comes back when this is all said and done.
Picked up some lemon drops (sugarless)...Helps a little.
Had a doctors appointment with Dr. Hollis (The Doctor who put in the feeding tube) for a checkup. Marjie and I have been noticing a little puss on the bandage when she changes the dressing and we were both a little concerned. The doc looked at it and said not to worry and that it looked fine to him. He did prescribe some antibiotics (Cephalexin) for me to take for 10 days, especially since I was on the chemo medicine, he didn't' want to take any chances with an infection, but still assured us that we were taking care of the wound properly and that it looked good to him.
Left his office and headed to Portsmouth to fill the script....Dropped Marjie off in front of the hospital with instructions to get the ticket and wait for me while I parked the truck. It takes so long at the Naval Hospital that anything you can do to save some time is time well spent. By the time I got up there after parking, we were still over 50 numbers behind in the line...Screw that!!!! We left and went to the civilian pharmacy. Cost $3 and took ten minutes, plus I got to shop for the dry mouth stuff. Tricare Prime is awesome! Meds are free at the Naval Hospital and only costs $3 out in town for generics and $9 for the original....I think it costs me 3 bucks to warm my truck up. This should have been a no brainer. From now on, we're going to the civilian pharmacy. Oh and by way, if I understand things correctly, the Naval Hospital gives you generic drugs as their first choice anyway.
Finished up with all that around noon and Marjie wanted to get her nails done, so I went and got a burger while she pampered herself for a little while.
Got back home around 1300 and figured since it was a nice day and I was feeling good, that we ought to get all the leaves picked up in the backyard. Spent the rest of the day doing that and went for a walk afterwards.
Feeling good now...like I mentioned, side effects so far is the loss/lack of taste in my mouth, the fact that my tongue feels odd and my mouth feels different......and have been noticing a ringing in my ears periodically....hard to explain, but about 20 times today, my ears would start ringing for no reason at all.
That's all for now! Lasagna for dinner tonight.

19 November 2006

2006-11-19T07:53:00.000-05:00

1-7 day. Feeling much better this morning. The nurse from Bon Secours Home Care stopped by yesterday to change the dressing on my PICC line and flush the two injection ports with saline solution and something else to keep it from getting clogged up. I was relieved to know that there was no infection starting and it was looking and doing ok. I had been worried because the doctors and nurses kept stressing that we need to keep the thing dry. It's a chore everyday taking a shower, as Marjie has to wrap the whole contraption up in a bread wrapper, and tape it really good against my arm before I can get in the shower. Then while in the shower, I try to keep my arm elevated so water won't get on it, but it seems like whatever we do, a little water does touch the bandage. Oh well, I guess we're doing it right.
Took Cohomojo on a walk yesterday by myself mainly because my back and muscle joints were starting to get all sore from just lying around on the couch for the last couple days. It felt good to walk around in the sunshine, but I must look like some old decrepit man to observers out there. I'm definitely walking slow these days.
We had an appointment to get my Neulasta shot at 1500, so Marjie and I took off around 1400 and got there in plenty of time. This was a quick semi-painless shot in the arm. The nurse explained that it would be normal for me to experience a fever of 100 degrees and some pain in my bones due to the effect of the drug trying to build back bone marrow.
After the shot, we headed to the base (NOB) Norfolk, so I could get a haircut and Marjie could pick up a couple things at the commissary. That went pretty good. I basically waited in a chair at the barber, while she did everything else.
Felt a little hungry when we were leaving, so got a burger and fries at Burger King for the ride home. That tasted like Sh*t.......For some reason, I had a craving for French Fries....
Got home around 1630 and hit the couch again and slept till dinner. Taco night!!! Had a taco and back to the couch.
Actually feeling a lot better now. David spent the night at one of his buddies and Marjie and I watched a couple movies. Not feeling nausea, but my muscle joints in my ankles, knees and legs were throbbing. Good ole Marj!!! Rubbed them for me and made me all better.
Ate some popcorn and that made me feel better?????
Went to bed and slept pretty good last night...
It's now 0810 and I'm feeling tons better than I have for the last few days....
Figured I'd update this blog, take a shower, eat some breakfast and then Marjie and I will take Mojo on a walk since it's such a nice day out there.
So where am I at with this you might ask?
Completed 1st week of chemo....
Have the next two weeks off...
One more week of chemo...
two weeks off..
Radiation/chemo for 7 weeks.
More to follow as I see the doc who put in the feeding tube on Monday, and my Oncologist on Wednesday.
Later!

18 November 2006

2006-11-18T09:37:00.002-05:00

1-6 day. Yesterday was a pretty crappy day. Had an appointment with Dr. Debo, the surgeon who removed the mass out of my neck for a check up. Our appt. was for 0900 and I'd been feeling nauseated all morning, so just moving about without getting sick was a chore. We made it to the appointment ok, then headed back home, where I ended up sleeping the rest of the morning and afternoon. Had another appointment with the Oncologist to get the pump removed at 1500. I woke up about 1400 and we left at 1430, still nauseated and feeling wiped out. Got the pump taken off (yeah!), but still have that nauseated feeling and the feeling of being totally wiped out. Spent the rest of the afternoon and all evening on the couch dozing. Think I finally went to bed about 8pm last night and I figure I spent all but about 3 hours on the couch snoozing. It's hard to explain, but I just feel drained and sick to my stomach. My back and legs are starting to ache, probably from lying down too much.
Got up this morning (Saturday), and currently waiting on a phone call from the Home Care providers, as they are supposed to make an appointment to come out and change the dressing on my PICC Line bandage, then we have an appointment to get my Neulasta shot this afternoon.
I'm feeling a little better today, but still have that drained out feeling. Marjie made me some scrambled eggs and bacon, which tasted good, but sent me to the bathroom almost immediately. My mouth has a weird feeling and taste to it.........This is some bad sh*t!
I wouldnt' wish this on my worst enemy!
Hopefully, this afternoon or tomorrow I will have a little better news to report, but right now it's not going so good. I'll sign out for now.
Thanks again for everyone's support and if I don't answer you email directly, know that I did see it or at least someone read it to me.....

16 November 2006

2006-11-16T07:24:00.002-05:00

Here we are on the morning of the ole 1-4 day and doing so so I guess. Just wanted to thank everyone who's called, sent email's and posted to the blog. It means a lot to me to know you are all out there praying or thinking about me.
I'm doing okay or as as good as can be expected. I've had minimal side effects with the exception of getting tired very quickly throughout the day and a little nausea during the evening.
My routine has been getting up around 0700 and trying to do a little work on the computer, then get something to eat and take a few meds that the docs have prescribed for me. Shower comes next. That is a real pain the ass, as I have to have Marjie tape up my the bandage covering this PICC line really good on my right arm so it won't get wet, hang the Chemo Pump outside the shower so it won't get wet, then I inch my way in there and shower as best I can keeping right arm lifted out of water spray while also trying to keep the Feeding tube (PEG) tube dry (that doesn't work). We put one of those new shower heads on that has a 6' portable handle which seems to be working much better than the regular shower head, so bottom line is that even though it's a bit of a hassle, I still get to take a shower everyday.
After my shower, Marjie flushes the PEG and changes the dressing on it and I get dressed and ready for whatever we have going on during the day.
Ran some errands around town on Tuesday for a couple hours and it wasn't so bad, but after a couple hours I began to get pretty tired and started feeling nauseated, so we headed home and I spent the rest of the evening on the couch.
Same routine for yesterday except instead of running errands, we took Coho for walk and finished refilling the hot tub.
Seems that if I take it easy a little more often, it's not to bad dealing with side effects. I'm trying to eat small meals and drink plenty of fluids throughout the day rather than just a couple bigger meals like usual.
I guess time will tell as far as what I'm to expect with the side effects. Haven't lost any hair yet, no tingling of the toes or hands. Every once in a while I thought I've experienced a tingling in my mouth...not sure if I'm just imagining it or not, but who knows.
Tomorrow at noon, I go to see the surgeon that removed the mass out of my neck. He's a great doctor and wants to continue seeing me to just to keep up with the situation. I think this will be the last time I see him for another month or so, but he wants to stay in the loop.
At 3pm I go back to the chemotherapist, Dr. Atienza and get this pump taken off me for a couple weeks. We talked to his nurse yesterday and the plan is for me to build back up white blood cells for the following two weeks, then start on the 4th of December with the next dose of Chemo like I'm going through now.
So if I have it right, it's one week of chemo, two weeks off, 1 more week of chemo, two weeks off, then we start the radiation/chemo...but that's another month down the road.
I'm gonna close for now, hope this makes some sense....Time for some breakfast and need to get going on the morning routine...Thanks again for everyone's support! Your thoughts and prayers must be working cause I'm still here doing ok.

13 November 2006 First day of Chemotherapy

2006-11-14T08:27:00.000-05:00

Today is the first day of chemo so I’m calling this 1-1 day to signify week 1, day 1.

Woke up this morning at 0400 tossing and turning so I suspect it’s from the anticipation of the unknown of what’s going to happen today. Marjie also woke up at the same time and suspect it for the same reasons and also the fact that she is still a little jet lagged from her cross ocean plane trip from Egypt.

Marjie got up and decided to start one of her workout tapes and then take the Coho for a walk, so I finally got this blog going. I started at the beginning and hope to get caught up in the next couple days, and then it will just be a daily update of what the hell is going on with me.

Anyway, I worked on the blog from about 0400 till almost 0800 and realized that I need to start getting ready since we needed to be at Virginia Oncology Associates at 0900.
Took a shower and headed downstairs to eat a quick breakfast consisting of an English muffin with peanut butter and a banana with some apple juice. While I was eating Marjie flushed and changed the dressing on my feeding tube. Once done with that, I packed my backpack with a blanket, ear phones for my cell phone which is also a MP3 player, a small bag of crackers, PC World magazine and a book.

Arrived at the doctors office at 0910 and waited in the waiting room till 0930 when we were called in to the chemo room as I call it. This room consists of about 12 Lazy Boy leather recliners that are spread out along the walls. Next to the recliners are portable IV tube hangers on wheels with some kind of computer that the nurses can control how much IV fluid they are transferring into you at a time. We were told last week that if all the recliners weren’t taken that Marjie would be able to sit with me rather than having to get a folding chair to sit in for the day. As it turned out, there were 3 other patients getting treatment, so it left lots of open chairs and Marjie was able to kick back next to me all day.

The nurse came over and explained what was going to happen today and it basically goes like this. I will be receiving numerous chemicals/medicines/anti-nausea/hydration fluids in a series through IV bags which will attach to my PICC line.

First thing was for me to take another pill called Emend, which is an anti-nausea medicine. This is taken on the first day of chemo treatment and its 150mg, then I’ll take one the second day 80mg and another on the 3rd day after treatment 80mg.

First IV bag hooked up to the machine and then to me was yet another anti-nausea medicine called Aloxi .25mg.
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Next IV bag was what the nurse called a hydration bag which was 1000ml of saline.

Next IV bag was 250ml of Magnesium Sulfide 50% 500mg/ml. (This is to offset losses from the next drug called Cisplatin (Platinol).

Next IV bag was the real deal chemo drug 1000ml – Cisplatin (150mg) plus Mannitol 2,500mg. (This bag took over an hour to drain into me.

Next IV bag was another Chemo drug 150mg of Taxotere.

This all started about 0930 and the last drop went in approx 1545….what a day!

The nurse comes back in with the final drug 5-FU (Fluorouracil). This is a drug that needs to be dispensed for 96 hours continuously. The way this will work is that I will carry a fanny pack with a pump in it that is connected to the IV fluid bag which will inject through my PICC line 7,880 mg which is 157.6cc’s of 5-FU (Fluorouracil) over 96 hours at a rate of 2cc’s an hour into me.

Man, this is a real joy! I now have this freaking feeding tube coming out of my stomach, a PICC line installed into my upper right arm with two medicine ports dangling out, and connected to one is a tube going to an IV bag which is connected to this pump that I have to carry continuously for the next four freaking days. This damn thing can’t be more than 3 feet from my body and can’t get wet. Sheesh!
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So to recap for the day, I basically sat in a comfortable recliner reading magazines, listening to Dire Straits and Kenny G, wrapped in my own personal blanket very comfortable. The drugs going into me did not hurt and I really didn’t feel anything at all. The PICC line worked very well and because of it I didn’t have to have any needles today poking into me. When we were all done and the pump was turned on, Marjie and I left.

My next appointment is at 1500 on Friday to have the pump removed and another appointment at 1455 on Saturday for a shot of NUELASTA. This is the drug to bring your white blood count back up.

Headed home with Marjie driving this time. Think I’ll be a passenger for the next couple months.
Got home and Marjie had a roast in the crock pot for dinner cooking. Went out in the back yard and did a little cleaning up while Marjie and David finished cleaning the hot tub.
Came back in feeling good, ate a good dinner and kicked back on the couch and watched a little TV. So far, I’m feeling no side effects and all is well.

Went to bed at 2130 and watched TV in the rack till about 2230.

Goodnight!

10 November 2006 PICC Install

2006-11-14T08:11:00.000-05:00

Well, Marjie flew home last night on Emergency Leave and will be able to stay here with me through this whole ordeal.

Thanks again to my folks who unselfishly flew in from Tucson, AZ to be with me, take notes at Doctors meetings, cook dinners, clean house and give me moral support. I really appreciate that!

Mom and Dad will be flying back to Arizona after having passed all the information to Marjie.

Arrived at Chesapeake General Hospital Friday at 1130 for the PICC tube installation. It went very well and had little pain during the surgery.

The PICC was put in by a specially trained nurse, in an outpatient department on the ward. It was put in using a local anaesthetic, so that you do not feel any pain.

First, the skin in the area where the PICC will be inserted is numbed, using a special anaesthetic cream. When the skin is completely numb a needle will be inserted and then removed as the PICC is threaded through it into the large vein which leads to your heart. This did not take long and was painless. The PICC is held securely in place by a transparent dressing. I then had a chest x-ray to check that the end of the tube is in the correct position.

A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart.

The space in the middle of the tube is called the lumen. The tube has two lumens (known as double lumen). This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap to which a drip line or syringe can be attached. There is also a clamp to keep the tube closed when it is not in use.

The PICC line can be used to give you treatments such as chemotherapy, antibiotics and intravenous fluids and feeding. It can also be used to take samples of your blood for testing. You can go home with the PICC in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently inserted into your veins. This may be particularly helpful if your veins are hard to find or have been hardened by previous chemotherapy treatment.

Biggest issue that I'm faced with is the fact that the dressing cannot get wet, which is going to make taking a shower even more difficult since I now have to deal with the PEGG feeding tube and now this.

08 November 2006 Planning meeting with Radiologist

2006-11-14T08:04:00.000-05:00

Went to “planning session” at Dr.Amin’s office this morning – met and talked with Dr.Sinesi at length. The treatment plan has changed.

First of all, Dr. S. emphasized the importance of being able to keep up nutritionally during treatment, saying that the PEG gastric tube is best for this. Obviously nutrition by mouth is best and easiest, but as treatment progresses Dave will tend to develop mouth sores which can make eating difficult, and maintenance of proper nutrition is essential to his health.

Again the Dr. emphasized that radiation is for local treatment - tonsil and lymph nodes in the neck. Basically the radiation will treat an area (on both sides) from the top of the jawbone to the collarbone. Chemo is administered intravenously and the drugs flow throughout the body via the blood system. CAT scans can’t pick up tiny, microscopic cells that might be floating around, but chemo can attack those.

Chemo + radiation has a synergistic effect that enhances the effects of both – a 2+2=5 situation.

Dr.Atienza has been doing further research and both doctors agree that the cutting edge, “gold standard” of treatment would be to do two sessions of just chemo first, and then progress to the chemo + radiation 7-week program.

After the initial chemo treatments with Dr.Atienza, Dave will return to Dr.Sinesi and Dr.Amin for 2-3 days of planning – pictures, measurements, CAT scans, fitting of the mask – prior to beginning radiation treatment. It is probable that the “picture” at that point will be different from what it would be today – therefore it is prudent to wait till after chemo for this planning.

Dr.Sinesi told us to go directly to Dr.Atienza’s office to finalize discussions of the chemo plan, which we did.

After a long wait, Dr. Atienza came in to explain further all of the above, and to further explain the chemo treatment. Dave will undergo two sessions of chemo treatment over a three-week period. Raw data suggests that this plan is more effective and potentially easier for treating tonsil cancer. The “wrinkle” is that with the three drugs they will be using, there is some little risk.

Plan is now to start Chemotherapy on Monday 13 November. But first, I have an appointment for Friday the 10th to have the PICC installed.

07 November 2006 Home Health Care Provided

2006-11-14T07:58:00.000-05:00

Home Health care nurse from Bon Secours (related to Maryview Hospital) came to show him how to care for wound and how to flush PEG tube:

Wear rubber gloves to maintain sterility
Remove old tape and dressing.
Soak gauze pad with betadine and use to clean all around site, especially around edge of circular plastic piece.
Then apply triple antibiotic ointment to area, squeeze under edge of circular plastic piece.
Coil up tube and appliance and hold in place while you-
Recover with fresh dressing and tape in place.

To flush tube – twice a day with 200 cc water using syringe supplied.
Take up 70 cc water in syringe, undo clamp on tube holding tube upright, flush through first 70 cc water. Re-fasten clamp to avoid backwash. Repeat this procedure twice, using only 60 cc water the third time. Be sure to unclamp and reclamp tube for each “push”. Getting a little air bubble into the line is not a problem – just would cause a little gas..

If there should be a little debris or particles apparent in the tube, can use Sprite or ginger ale for the flush – the carbonation will help to clear out any debris in the tube….this would only occur when the tube is being used for actual supplemental feeding, probably not at this point.

For second flushing of the day, it may be possible just to gently uncoil tube and pull out from top of dressing, then tuck back in afterwards – to avoid having to reapply tape and dressing each time.

The bottle of normal saline is to use for external cleaning only – do not use to flush tube.

Home Health care provides all necessary supplies – when you are running low on something, let them know and they will bring more out.

06 November 2006 PEG install

2006-11-14T07:50:00.000-05:00

Surgery this morning to have the PEG (feeding tube) put in place – went to the hospital (Maryview) at 6:30 – was back in recovery by 8:30. We left the hospital with Rx for Demerol and Prilosec – to Portsmouth Naval Hospital to get these, and the Salagen Rx filled. While there he came close to passing out – chills and sweating – had to get a wheel chair and orderly to get back to the car. Probably due to taking a Percoset at Maryview on, essentially, an empty stomach. Stopped to get a milkshake en route to home and he seems better. REALLY better after phone call from Marjie with flight info!

02 November 2006 1st Meeting Radiation Therapist

2006-11-14T04:19:00.002-05:00

Once again, thanks Mom for you input on this!

On Thursday, Nov 2, I accompanied Dave to his appointment with Dr. Biral Amin, the radiation therapist. Again, a very impressive person – a young man, Indian?? But with no discernible accent. He was extremely personable, encouraging, understanding, explained things well.

Radiation is essentially high energy X-rays focused to a local spot. Radiation in combination with chemo has a synergistic effect, the combination of treatments being more effective than each one separately.

Side effects Dave will experience include sore mucosal membranes in the mouth and throat, possible difficulty in swallowing, dryness of the mouth, and altered taste sensations.

They will be using IMRT…..defined in one of the booklets we picked up as intensity-modulated radiotherapy, a recent advance that in some cases may spare normal tissues, including saliva glands. The doctors are able to adjust the radiation dose more precisely to the tumor.

He recommends that Dave be followed after treatment by an endocrinologist because of possible trauma (from the radiation) to the thyroid gland. This could be a life-long thing.

He prescribed Salagen, a drug to promote maximum salivary output, to be taken the three days immediately preceding radiation treatment. He requested an immediate “Pre-Radiation Exam” by Dave’s dentist (further explained in the pamphlets), and he was adamant that a feeding tube be inserted by a gastro-intestinal surgeon prior to beginning treatment. Reasoning for this is that it is easier to do that BEFORE treatment begins, and it is important that Dave’s nutritional level be kept at a high state, not allowed to suffer if and when his eating becomes difficult. He also explained that a chemo port, called a PICCline, will be inserted into a vein in the upper arm for chemo administration. (Dr. Atienza had explained this, also.) Both these tube insertions will be done in the hospital under anesthesia, but as an “in-and-out-in-one-day” procedure.

Dr. Amin said the radiation treatment would last 7 weeks, every day Monday thru Friday, about 20-25 minutes per session. At the first session (longer) ---or at the planning session???--- A plastic mesh mask will be fitted - the purpose of this is to help focus the X-ray beams, and to keep his head immobilized during the treatment.

Sequence of immediate future appts – Dental “pre radiation TX exam, GI dr. to insert feeding tube, Planning Session. Dr,s all to coordinate appts and treatment plan.

01 November 2006 First meeting with Oncologist

2006-11-14T04:00:00.000-05:00

First meeting scheduled with Virgina Oncology Associates, Dr. Daniel Atienza.

Fortunately my Mom and Dad flew in from Tucson Arizona to be with me and help with things around the house till my wife Marjie could return from her deployment in the Mediterranean Sea. Marjie is stationed on a ship that is currently deployed and not scheduled to return till December 6Th.

Here are Mom's notes which is a 100 times better than I could have done. Thanks Mom!

Wed., Nov 1. David Jr. and I accompanied Dave to the appointment with Dr.Daniel Atienza, a short, genial Filipino doctor. He started in to explain the rationale behind chemo/radiation therapy.tumor site only – radiation; tumor + metastasis to a lymph node – chemo. Chemotherapy will (1) enhance the effect of radiation on the tumor and (2) prevent further metastasis of the cancer cells. There is concern about metastasis to the lungs and bones; however, Dave's chest X-ray is clear which is very good. Side effects will include increased sensitivity to sunlight.

The combination of chemo AND radiation enhances the effects of both.

Chemo has the effect of bringing down the white blood cell count (white cells fight infection) so they will keep a close check on his blood chemistry. There is also the potential for hair loss (head, eyebrows, beard, everywhere). Unfortunately the best drug for the treatment of head and neck cancer also had an increased potential for nausea; Dave will be given pretreatment medication of Dexamethasone (Decadron) and Emend for nausea and joint pain. A side effect (of this medication??) may be numbness and tingling in the fingers and toes. This should subside when treatment is complete although there could be some lingering and possibly permanent numbness/tingling. Another side effect is possible loss of high frequency tones in hearing (something the Vigal boys already suffer from!!)

Side effects to the kidney will be monitored – the kidney tends to flush salts from the body (apparently the chemo meds are salts), and yet some salts are critical to maintain…..need to research this a bit more.

He may experience mild anemia, which they can counteract with the medication Procrit.
Another medication they will use is 5-FU (Fluorouracil) – this can cause diarrhea and mouth sores which will be temporary in nature, but still annoying. Several other drugs were mentioned – Aloxi, Emend, I believe these were all anti-nausea drugs.

It will be important to keep Dave’s nutrition at a high level, but eating may become difficult because of mouth sores, decreased saliva output, swelling of the throat, etc. For that reason they may want to insert a feeding tube, to be used when and if eating becomes difficult. The effects of the radiation on throat tissues, both internal and external, are similar to a heavy sunburn, but as radiation continues, internal throat swelling may occur. There are meds to counteract this, too.

Dr. Atienza anticipates a 6-week course of radiation and chemo – both together the first and last weeks, and radiation only in between. He also discussed the drug Ethyol (helps to reduce the occurrence of moderate to severe dry mouth) which will be used to prevent esophagitis and neuropathy in the throat (I’m really having to dig deep for my biology vocabulary!! – we’ll all be a lot more educated by the time we are through with this!) A possible deleterious side effect of Ethyol is a rash, and if he gets the rash, the drug is immediately discontinued.

I felt very comfortable about this doctor – he was thorough, understanding, easy to talk to. Dave asked him for a “guesstimate” of his chances of going through all this treatment and beating the cancer – the doctor said, at least 50-50, which was of course NOT what Dave wanted to hear. Would have to give the Dr. a D- on that particular bit.

He also explained that the surgery for this problem is HUGE – massive loss of tissue in the jaw and neck – and that is why they much prefer to treat the problem with chemo and radiation. He also said that, should the surgery become necessary at some later date, having had the chemo and radiation previously would not have a negative influence on the surgery. Obviously, this is an option we all would hope would never become necessary.

This IS tonsillar cancer, metastasized to the lymph gland. This is ONLY on the left side, which certainly is a plus.

He referred us also to the NIH and NCI websites, also PDQ, and a site called PLWC (People Living With Cancer).

27 October 2006 Two weeks after surgery

2006-11-13T19:38:00.000-05:00

Here are a few pics beginning with before and after. You can see that the scar is getting better and better each couple days.

Returned to Dr. Debo's office for a check up on my surgery and talk further about treatment possibilities. I guess we discussed this last week but didn't put a post about that. Basically, he wants to send me to talk to a Oncologist and a Radiologist and get a second opinion. He feels it would be better to treat with a combination of radiation and chemotherapy rather that go in and do more surgery. He says surgery is still a possibility, but after the other two.
Appointments are made!

19 October 2006 Pathology Report

2006-11-13T19:21:00.001-05:00

Here is the pathology report.
A 44-year old male presented with left neck mass. Patient underwent biopsy to rule out lymphoma.
Pre-operative diagnosis: left neck mass
Post-operative diagnosis: left squamous cell CA
Specimens (a): left neck mass (FD)
(b): left tonsil biopsy
Gross description:
A: Received is one appropriately labeled container additionally labeled "left neck mass, rule out lymphoma:. It consists of a 3.2 x 2.2 x 2.2 cm large necrotic lymph node. A small portion of the tissue is submitted as (FSA1). The remaining tissue is submitted in (A1) through (A6). NTR
B: The specimen is received in buffered formalin labeled with the patients name and "left tonsil biopsy". The specimen consists of two portions of brown and tan, soft tissue. This is filtered into a biopsy bad and measures 1 x 0.5 x 0.3 cm in greatest dimensions. The specimen is totally submitted in one cassette labeled (B).
Diagnosis:
A: Left neck mass, biopsy, frozen and permanent section diagnosis:
- Metastatic squamous cell carcinoma, moderately differentiated, focally keratinizing in lymph node. The metastatic focus measures 3.2 cm in greatest dimension. Extracapsular extension is identified.
B: Left tonsil, biopsy:
- Invasive moderately differentiated squamous cell carcinoma.

The pathology report in a nutshell showed squamous cell carcinoma (T1 N 2 a of the left Tonsil.)

16 October 2006 Day of Surgery

2006-11-13T18:23:00.000-05:00

OK, today is the day of the surgery. I haven't been able to eat or drink since midnight last night and it's a b--ch not being able to have my morning cups of coffee. Marjie's sister Sarah picked me up at 1130 and we headed to the hospital. Sarah dropped me off and I checked in. The nurse took me to a room and had me undress and put on a surgery gown and then climb in bed. I laid there for about 30 minutes till the nurse came back and started hooking up gear to me. Heart rate monitor on my finger, blood pressure gadget to my arm, and then an IV. They started pumping some IV fluid in me for the next couple hours while I watched TV and waited on Dr. Debo who was doing other surgeries that day. Around 2pm, the anesthesiologist came in and said she was going to give me some "feel good medicine", then the anesthesia.
Boy oh boy is that stuff good! A few minutes later, they wheeled me out and to the operating room. I remember heading out the door and into the passageway, and I asked the nurse what this medicine was supposed to do? because as far as I could tell, it wasn't doing anything. She said that I should feel like I consumed three or fours beers. I wasn't feeling antthing! Next thing I remember was waking up in the recovery room!
There was a nurse attending me and I asked her where I was and what was going on? She said I just came out of surgery and the doctor would be in shortly to talk with me.

Now for the bad news!

Dr. Debo arrived about 20 minutes later and explained that while doing the surgery, it turned out that it was not a brachial cleft cyst, rather an infected lymph node gland. He noticed a small lump on my tonsil and did a biopsy of that and along with the lymph node gland, sent it all to pathology to have them tested.

Both came back as squamous cell carcinoma.

Dr. Debo said he would have the pathology report in a couple days and we would discuss options then.

David and Sarah met me in another room while I was recovering and both had been briefed by the doctor as to what was going on.

I was released that evening since there was no point keeping me through the night if I could recover just as well at home. They wheeled me out of the hospital in a wheel chair and David and I proceeded to the Naval Hospital to fill my prescriptions for pain meds. I was given some Percoset, some antibiotics and something in case I became nauseous. We then headed home and I spent the next couple days recuperating.

Percoset works for the pain, but I was getting an alergic reaction to it I think. It really made me itch. Used percoset for a day and a half then switched to regular 325mg tylenol.

A few days later, Dr. Debo sent me this email:

Dear Mr. Vigal,

My nurse informed me that you requested that I e-mail you a brief synopsis of what we found at the time of surgery. I sent the tumor we removed from your neck to the pathologist for frozen section evaluation. This gives us a preliminary result and is not as accurate as the permanent pathology (so the results could change) but the results of the frozen section were that you have a squamous cell carcinoma. This tumor is likely related to your previous tobacco use. The primary site is as yet undetermined, however, while you were asleep, I examined the back of your throat and did a directed biopsy of your left tonsil to try to identify the primary tumor. I mentioned that this is a serious but treatable tumor. We will talk further on thursday when hopefully we will have the permanent pathology back.

Richard F. Debo, M.D., F.A.C.S.

06 October 2006

2006-11-13T18:15:00.000-05:00

Back to the ENT clinic for the results.
Turns out the biopsy came back Non malignant. This is good right???? Dr. Debo thinks what we are dealing with now is called a: Branchial Cleft Cyst.
The plan is to perform surgery and remove the thing. Surgery is set up at Virginia Beach General Hospital.
Dr. Debo explains that he will make an incision in my neck, Left side and remove the cyst. I will check into the hospital on the 16th of October at 2pm and will be able to go home the following afternoon if all goes well. They are calling this a 23 hour short stay.

04 October 2006 ENT Appointment

2006-11-13T17:41:00.000-05:00

Arrived at Eastern Virginia Ear, Nose & Throat Specialists on time and met Dr. Richard Debo. We talked for a while and he informed me that he wanted to run a tube with a scope up my nose and down my esophagus to check for any tumors or anything unusual. First they sprayed some kind of numbing stuff down my throat so I wouldn't feel much, then he ran the scope up my nose and all the way down. I was watching with him on a monitor of my internal workings. Boy was that weird. Everything looked normal so he decided to do a biopsy of the lump on my neck. Biopsy
He took two biopsy's and said he would have the results in two days.
Here is a copy of the email he sent me following our appointment:

Here are the notes Dr. Debo sent me in an email:

Dear Dave,

As per your request I am writing to summarize our discussions from today's appointment. You presented to the office today for evaluation of a three month history of a left neck mass which has not responded to treatment with a first line antibiotic (Amoxicillin). You are a recently reformed smoker having formerly consumed one pack per day for the previous 20 years. The CT scan you brought with you revealed a well circumscribed mass in the left neck which touches the jugular vein, carotid artery and the parotid gland. The differential diagnosis at this point includes both benign and malignant possibilities. More commonly these things turn out to be benign tumors like branchial cleft cysts, enlarged lymph nodes, or infections. I am concerned however because of your past tobacco use about the possibility of a malignancy such as a squamous cell carcinoma, lymphoma or a thyroid neoplasm. After obtaining a through history and physical exam on you in the office we then performed a fine needle aspiration(FNA) of the neck mass to try to obtain cells for diagnostic studies. This may help to guide our further management. I placed you on another stronger antibiotic while we await the results of the FNA to see if we can shrink the mass down. I will see you back in the office in one week to review the biopsy results and to plan our next steps. I hope this helps you out. If you have other more specific questions please feel free to call me in the office I'll try to get right back to you.

R. F. Debo, M.D.,F.A.C.S.

CT Scan

2006-11-13T07:16:00.000-05:00

Boy was this ever weird! I arrived for the appointment and was escorted to a trailer where the CT Scan machine was located. The nurse had me take off my wedding ring and necklace and lay down on the CT Scan machine. This looks like a big table with a circular device that can travel the length of the table and has the ability to take pictures of your body. Here is a link that might be helpful:CT Scan
After I was laying down on the table the nurse hooked up an IV tube to me and informed me that he was going to inject some kind of dye into me that would basically light up my veins so they could see what was going on.
The dye they inject instantly makes your whole body warm. You can feel that stuff immediately. It also causes an urge to pee for some reason. After the dye was injected, the CT Scan machine began moving back and forth from the top of my head to my shoulders. This went on for about 20 minutes and then was finished.
I was advised that the as soon as the results were in that I would be notified.

Summer 2006

2006-11-13T06:59:00.000-05:00

My son and I left Port Orchard, Washington and arrived in Chesapeake, VA on the 2nd of July. We spent the next couple months unpacking boxes, putting the house together, figuring out the area, getting my son enrolled in school (Senior Year), getting a new vet for the dog, finding doctors for us and all the things one has to do when they move to a new area.
I made an appointment to see a Family doctor in August 2006 and had my first appointment on September 15, 2006.
During the exam, I pointed out the the lump on my neck. The doctor, (Dr. Kim-Foley) became very worried and said that we needed to get this checked out immediately. She scheduled an appointment for me to have bloodwork done, a chest xray performed and a CT scan done.
I was immediately sent over for the chest xray, but had to wait another day for the bloodwork due to the requirement to fast for at least a day. You are not supposed to eat or drink anything before blood tests, so I scheduled an appointment for the next morning.
The CT scan was scheduled for a few days later.
Chest xray and bloodwork came back fine with no problems.

Spring 2006

2006-11-13T06:29:00.000-05:00

I had developed athletes foot or at least what I thought was athletes foot. Don't even know if this has anything to do with anything, but figure I'll put this in here since it's what caused me to initially go to the doctor. Anyway, I went to see a doctor at the Naval Hospital in Bremerton, Washington because I had a crack in between my little toe and the next toe and couldn't get it to clear up. I tried sprays and creams to no avail. While I was trying to get this fixed, I also started a sweating problem. For some reason, I would begin sweating under may arms and my antiperspirant/deodorant would not work. I again, tried everything...every brand know to man with no luck. I went to the doctor and got unsatisfactory results.
I had also noticed a small lump about the size of a big marble on the left side of my neck. I thought it might me a swollen lymph node gland caused by infection from my toe or something. I asked the doctor about that and she shrugged it off saying it was nothing.
Long story short. I found something on the Internet about the sweating that cured my problem in 2 weeks. It's been 7 months and haven't had an issue.
The crack in btwn my toe finally cleared up on it's own????
The lump on my neck stayed!!!
My wife and I were in the process of moving from Washington state to Virginia due to her orders to a ship homeported in Norfolk, Virgina. She moved to Virginia in May and begain workups on the ship who was getting ready to deploy to the Persian Gulf in June. My wife found a house for us in Chesapeake, Virgina and My son and I had the responsibility of selling our house in Washington and getting ready to move our household goods.
My son and I arrived in Virginia and began settling in the new house on the 2nd of July, 2006.
The lump on my neck is still there, but does not hurt or even bother me. In fact, I only realize it's there when I shave.

Background

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Name: David Vigal

Age: 44

Married to Marjie, have 1 daughter (Jennifer), 1 Son-in-law (Eddie), 1 Son (David), 1 Granddaughter (Alexis) and 1 Grandson (Daniel).

Occupation: Computer Customer Service Support; Retired in 2003 as a Senior Chief Information Systems Technician in the United States Navy.

Recently moved to Chesapeake, Virgina. My wife is the Operations Officer on a ship homported in Norfolk, Virginia. We had both been stationed and working in Port Orchard, Washington for the past 10 years.

Welcome to my blog

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Soon after I was diagnosed with Tonsil Cancer, my Mom found a webpage from a guy named Raph who lives in the UK who was also diagnosed with Tonsil Cancer. His webpage gave me the idea to start this blog as a way of putting down my thoughts on a daily basis, storing pertinent information from doctors and keeping family/friends updated.

Please bear with me through this process as this is my first blog and I'm kind of blindly setting this up and getting the info posted.

This page will be updated whenever I have new information which hopefully will be on a regular basis. I have a lot of catching up to do, so this will be very basic and over the next couple months it will become more detailed with further links and photos. Again, I got this idea from a cancer patient named Raph who lives in Suffolk, UK. He is married with three sons and was diagnosed with Tonsil Cancer in 2003. His last post was in September of 2006 and he reports that everything is great so far, and for the last 6 months he has been clear.