Hi Miriam;
Welcome to this forum. If you check my signature below, you will note the similarities to your father situation and I can share much information with you.
I too was a musician, but my time on the keyboard and skins was cut short after only 10 years - by a complete lack of talent. By comparison, tinnitus was a happy problem in my case!
I haven't read all the replies to date to your post, so I hope any comments do not conflict, confuse or become redundant.
Some points follow, and please feel free to ask me any specific question that comes to mind either by a post on this forum or direct by email to:
[email protected] , your choice.
1. Dental issue: Sounds like they are being removed, but I wasn't about to lose all my natural teeth without a fight. I didn't do as much as I could have to protect them during treatment, but they all got through despite soft tissue and bone damage. Six months ago, rampant deterioration began, and I was not able to clean them very well due to trismus (lack of jaw motion) and xerostomia (lack of saliva flow) due to radiation. My regular dentist has researched alternative restoration procedures and newly available materials that were developed for irradiated patients and related problems. What was a pretty dim forecast a few months ago has turned around to the point where the decline has been stopped and they should last another 10-15 years when geriatric issues come to the forefront. They can be saved.
2. Feeding Tube. I fought having the tube installed until the 6th week of radiation, and felt I could make it the last week, so why do it?
I was misinformed. I understood that the pain and difficulty swallowing associated with the radiation treatment would stop when the actual treatment stopped. It was never emphasized to me that the radiation effects continue to build and intensify for anywhere from a couple weeks to a couple months following completion of the treatments themselves. Had I known that, I would have had a much easier time with it. It wasn't until the eve of my third and final chemotherapy session, having lost about 30 pounds in a little over a week, that they gave me a choice: either I regained something like 20 of pounds I had lost in the next 2 days and 1 night, or they would cancel my 3rd chemo session. They knew that I had set only 2 goals at the outset of treatment, and they were #1) not to have a g-tube installed (I was a wimp about it); and #2) to survive all 3 chemo sessions (I had heard that many can't handle the last one due to physical difficulty & nausea.) I set no goal with respect to surviving beyond the belief that life is a 50-50 proposition at the best of times - either you live or you do not live, its that simple. (I learned later I had about a 10% chance of being alive in 3 years. I'm now in year 2 of remission. Yippee!)
The other important thing to be aware of is becoming "feeding-tube dependent." I didn't think about it when I first heard reference to the term, but I still take 100% of my nutrition through the tube. Most people return to normal feeding habits a lot sooner than I, but be sure to look into how this comes about or may apply to your Father.
In my case, I can swallow liquids without too much problem and use ice-cream as a training aide, but that is it until I am able to open my mouth wide enough to insert solid or semi-solid foods AND be able to clean my teeth properly of all the food related bacteria that accelerate tooth decay in the absense of saliva.
There are many more things to consider than what I am touching on now.
3. Chemo with Cisplatinin. The single most scary piece of research information I read about cancer overall was what I learned about Cisplatinin. That said, it is one of the most successful treatments ever for this type of cancer, has been around for something like 20 odd years, and there is little or no loss of hair. That wasn't an issue for me, and true to form, I lost not a single locket, but loss of hair is a usual side-effect of most chemo drugs, generally speaking. Speaking of side-effects, Cisplatinin is noted for acute side-effects, particularly nausea which can become totally debilitating. I was very apprehensive about nausea and vomiting and the combined effect on nutrition (hence concern about feeding tube). In my case, I did not experuience so much as a queezy feeling at any time during any of my 3 sessions, and I should have mentioned earlier that what I received were "high dose" treatments according to my chart & written reports. I am not certain how I got away unscathed, but I was definately prepared for the worst, both in mind and in material (I caution myself....)
The important thing is not to worry about the severity of the side-effects, because the standard anti-nausea drugs that I was given were excellent and 100% effective. I believe that one's mental attitude and preparation accounts for much of the results we achieve, positive as well as negative. We become what we think about most of the time.
4. Are you and your Father being silly? There are no silly questions when it comes to cancer. Period. There are plenty of tough decisions, scary moments, the occasional inappropriate response, a few bad radiation days (like the software glitches), one or two painful biopsies, and an abundance of stress for everyone.
Offsetting all of that is the most incredible group of caring, sensitive, knowledgeable, skillfull and professional human beings will ever be assembled into a team format who will focus their every resource and energy on your Father's fight for his life against this most despictable disease.
I don't know what other people do, but I was so impressed with each and every individual I came into contact with that I decided to match their effort and reflect back a positive and powerful attitude. Once a treatment plan had been determined for me, I placed 100% of my faith in their capable hands, and said "Bring it on baby!"
The Fraser Valley Cancer Centre in a suburb of Vancouver, Canada where I received treatment is an architect designed, enhanced open concept facility with plenty of cedar, glass, skylights, plants, and artwork tastefully arranged. The air is replaced every few minutes, and I found it a most pleasant environment just to stand there and take ot all in. Aside from the 15 or 20 minutes spent attached to the equipment every visit for 7 weeks, I looked forward to spending time there. My radiation technicians were some of the most fun and dedicated people I have ever met in my life, and that attitude was reflected by the greeters, the office workers, maintenance personell, cafeteria staff - you name it! Cancer changes your life forever, and every experience is unique, but like most others things in life, its what you make of it that matters.
5. Finally, surgical procedures. I went under the knife for major surgery and had a radical neck dissection where something like 27 lymph nodes were removed from my neck and upper chest area along with a bunch of soft tissue, veins, nerves, muscle etc. The surgeon had told me that I would experience some post operative immobility around my shoulder and that it was a relatively routine procedure. He did a fabulous job, and there were no complications and they removed the 67 metal staples within 10 days. Nothing other than the staples were used to close the wound, and it air dried with no other bandages. Incredible. Mind you, I still haven't been able to find the other half of my neck, and I regret cutting my shoulder length hair off as it would have hidden what's missing. But how can I be critical of one of the men who saved my life? I don't; I just joke about it. I'm just happy to be here, 'cause every day on this side of the ground is a bonus to a member of the 10% club.
I've rambled on a little long here, and hope you don't mind. There's already an overwhelming amount of information for you and your Father to process, but just realize that it comes with the territory. Don't hold back any questions or concerns - everybody you'll meet on this website has travelled the same path one way or another, and we all relate to your situation. Keep your guard up cause cancer cheats and doesn't play fair or by any rules, but take comfort that you're not alone in the fight and there's every possibility for a 100% cure, but no guarantees, so don't freak out when you are confronted with someone who is ignorant about cancer and knows nothing about today's level of success.
Be sure to post your progress and share your experiences.
Here's wishing you, your Father, and all your loved ones long and healthy lifes.
Best regards,
JT2
PS: Remind your Father that only 6 inches separates him and anything he wants; the 6 inches between his ears!
