Saturday, March 23, 2013

A milestone that feels like a millstone.  Yesterday I finished the six week radiation/chemo component of the treatment plan. Got my certificate of achievement and got to ring the "graduation bell", ding dong day.  Actually, it was quite a treat. Got a standing O from all the patients and staff assembled in the reception area, and sweet hugs from most all the staff.  As uncomfortable as this treatment process is, I will miss the people involved. So very impressed with their dedication and humanity. These people at the Chattanooga Memorial Cancer Institute know cancer and know cancer patients. And they treat them and us wonderfully. I feel most fortunate in this regard.  I've made a few nice friends among the patients I saw daily and always worry some when I don't see them. Some of these folks have had a much rougher time of it than I.

Before they disconnected my 5-FU pump, doc told me what to expect in the coming weeks. Almost wish he hadn't told me to expect that the side effects can get worse before they get better. Sure enough, he was right.

So in the end, the inventory of side effects feature a bit of nausea and significant mucositis, leaving tenderness and sores from my lips to my stomach. Indeed, it is a little worse today but I'm sure it's gonna turn in another day or two. Those and the low level fatigue are about it for the side effects in this treatment segment. I am looking forward to the two week break and the six week weekly Gemcitabine infusions. Found very little discomfort with that in the beginning six weeks.

A trickier matter is what to think and do about the answer Dr. N gave me to my question about what he would expect my future to be given his experience with other patients with similar conditions, with this treatment regimen, and with my response so far.  He agreed that finding only one cancerous lymph node among the nineteen they removed could be a  good sign, suggesting they might have gotten most all of it with surgery. However, the fact that they'd found some in the fatty tissues on the margins argues in the opposite direction. So, while he hopes we may have a cure, the history of pancreatic cancer suggests otherwise.

So his guess was that we may well have delayed the recurrence following surgery. That some have survival rates of 18 - 24 months, and a few survive about 36 months. Without the chemo and radiation, many survive 12 months or less. There is no telling if or where I might fit into that picture. One effort to find comfort in that finds me concluding that given my family history, I'd be very lucky to survive 36 more months for any reason, including "old age".  Actually, I've always believed that for me, anything beyond 56 years would be gravy, and thus I've had quite a lot of gravy, for which I'm grateful.

So there remains the thinking and deciding what to do with the rest of this time. I really have only a few powerful beginning ideas, and realize it would take a pretty big chunk of time to even get moving on them.  But whichever path we choose, enjoying the present moment and day will be the feature part of the plan.

Never give up.  Namaste.


Sunday, March 17, 2013

Heading into the home stretch of the 5-FU/radiation treatment regime. Four sessions remain of the planned 28.  Chemo doc removed the 5-FU pump for the weekend, largely due to nasty mucositis,  and radiation team gave me Monday off so both can end on Friday. Saturday was not too bad in that I got outdoors for a while and could mostly ignore the discomfort. But it's significantly worse today, and that's surprising as I expected it to go the other way. Ah,well... just five calendar days left for that regimen and then after a break it will be two three-week programs of Gemcitabine IV therapy. I tolerated that very well the first time and hope to have the same experience.

Overall, today is kinda miserable. All food except scrambled eggs looks and tastes bad. Can't chew and teeth remain in glass on sink. As of yesterday, had lost exactly 80 lbs since the diagnosis was made. Be happy to stop after 40 more and chemo doc says that plan should be ok.

So as crappy as it feels, I am determined to make the best of this deal and be grateful that I'm so close to the end of radiation.

As for you, survivor, I hope you are well. Better days may well be ahead.

Keep on truckin' and never give up.

Sunday, March 10, 2013

So much for looking forward to radiation treatments. They're starting to take a bit of a toll and that will no doubt increase as we go for the next two weeks.  The only problem I'm sure is related to radiation is the diarrhea. It was bound to happen as I can't imagine how they could get a beam in there without damaging some of the surrounding organs and tissue. The pancreas is, after all, surrounded by other organs and the beam has to go through them to get to the target. Still and all, I have great faith in the oncology radiation doc and the techs. They are extremely careful to get me positioned properly and watch closely as the beam travels across my abdomen.  Chemo doc prescribed a med for the blasts and it appears to be working for now.

The 5-FU has begun to have adverse effects again. After they had the pump disconnected for a week, my mouth and throat finally healed and were good as new. That's encouraging to think about how quickly they will heal once we're done with this stuff in two weeks. The effect is common, and I believe is called mucositis, and it inflames the skin of the throat and mouth to the point where I don't really want to eat anything. It could also be caused by radiation in that local area. Guzzling the protein shakes now and then works somewhat. But the stuff I can eat with this problem (dairy mostly, scrambled eggs and hot cereal) tend to aggravate the other problem.  There is a deal called Magic Mouthwash that helps some in that the Lydocaine in it numbs the mouth and throat for a couple hours at a time.

Please don't take this as complaining. I'm not. Just passing on the information about this experience so that anyone looking here for information will get what's real.

There is a new release about how Doxepin relieves some Mucositis pain.  Here...

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2BTumors&d_id=148&i=February+2013&i_id=932&a_id=22583

All for now. In two weeks I get to ring that damn bell. Never give up. You are a survivor.

Saturday, March 2, 2013

Feels like a bit of a setback somehow, even though the docs tell me that mouth and throat sores are a common effect of 5-FU.  So they disconnected my pump yesterday and doc told me that after three solid weeks, to leave it off for a week should not make much difference in the efficacy of the radiation, which is the only reason to be taking the 5-FU.

Seemed like I could feel the change in my body after only two hours free of those constant infusions. Hard to describe the change, but it mostly seemed like a lightening of some kind. As though the body had been pushing back against the chemical and finally was free of that need to push.

Grateful for the relief, but today the throat and mouth were just as bad. Throw in some nasty explosive bowel movements, and there you have my Saturday.

Except for the Chinese fire drill with what doc calls Magic Mouthwash, with Lydocaine to relieve the pain.  They were to call it in to my local pharmacy yesterday, but when I checked today, the pharmacy hadn't heard from them. So got the doc to call again only to find out the pharmacy didn't have what they needed and would have to wait for a special order on Monday. So I asked them to transfer it to another major pharmacy. No luck. That pharmacy wouldn't try it without knowing which combination of ingredients the doc wanted. So original pharmacy said they would call doc to get the information they needed to transfer it. But they didn't. The pharmacist said that's not what he told his tech to do. About to give up when the on call doc phoned and said it wasn't likely he could find out the desired recipe today and that I should gargle with salt water till Monday when the original doc could call it in. Ready to give up when the original pharmacy called and said that the doc had called them and they did indeed have what they needed to mix the recipe. But that they were going to close in eight minutes. Tough challenge when one can't drive and must depend on neighbors who had left for the day. So we will wait till Monday after all.  Who says our health care system is in need of improvement? No point fussing. Will learn to love salt water.

Never give up and keep smiling through it all.