I've been thinking I needed to add some clarity about the obvious enthusiasm and optimism in my last post.  While the tumors and the lung embolism were gone in the last CT scan, it was not all clear sailing and it certainly didn't mean I've heard the last of pancreatic cancer.

Doctor N reminded me, as he read the radiologist report of clear scan results, that what this means is that we were, as hoped, able to delay the recurrence of cancer, and it did not mean we'd cured it.  I believe I was so encouraged by the results that I just did not take that in as deeply as I should have.

So I went and did a little browsing and homework about pancreatic cancer recurrence and found several studies that seemed quite relevant and also a little encouraging to me. One of these studies focused on the question of recurrence and survival based on the time of recurrence (early, i.e. during chemo/radiation, or later) and how that effects survival rate. The others were about the blood marker CA 19-9 and how various levels of that marker seem to effect recurrence.  This is where my issues come in. In our final visit, Dr N pointed out that my CA 19-9 marker had increased from 60 to 120 and that this is not an encouraging sign. What is encouraging is that the studies point out that survival among patients with CA 19-9 levels below 180 is considerably longer than among patients with levels above 180.  It also seems possible that levels can reduce with time following surgery and chemo/radiation treatment. So that is a possibility worth keeping in mind.

So, here are links to those studies for those who might want to dig through the details.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063904/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326972/
http://jco.ascopubs.org/content/26/36/5918.long

As a general rule, I've found the studies and articles in The Journal Of Clinical Oncology to be very well done and quite readable.

A bit of a jolt happened yesterday when I had to write to the VA to claim a hardship situation regarding my appeal of their decisions on several of my disability claims. By some strange turn of events, I was able to reach somebody in their customer service call center, and by an even stranger turn, this person was able to give me some really useful information.  I had called to make sure they actually had my appeals in their system, as for the second time since April, their computer system showed none had been filed. As we talked, I asked how long the appeal process normally takes and was told that an average simple appeal typically takes 370 days. Good grief!  I commented that I likely would be dead before they got to it and the rep thought I was just kidding. I told her about the pancreatic cancer, and she told me I could write a letter stating a hardship caused by a terminal illness and asking for expeditious handling of the appeal.

So I wrote the letter, pointing out that I likely would not survive 370 days from the date of the appeals.  And strangely,  I kept coming back to it, re-reading it nearly ten times throughout the day. Not entirely sure why this happened, but I suspect it was that I had some kind of tangible evidence or admission of my mortality. It didn't feel good at all. Not real scary, but something of a downer for sure. I guess I'm glad that I'm suffering so badly from the diabetic polyneuropathy and that the constant pain, while bothersome, keeps my attention pointed away from cancer. I hope I'm not minimizing or using the other ailments as a way to avoid dealing with it, but I'll take it whatever the reason.

Keep on keepin' on, reader. Never give up. We never have more than the moment at hand anyway. Best to you.

Namaste

Well, they said in September that it couldn't be done. All three docs. The surgeon said he might not take the tumor because I was a crappy risk for surgery. Each test told him otherwise, and he changed his mind. The oncologist said chemo might not help following surgery because pancreatic cancer is just so dang tough to deal with. The radiation oncologist said much the same, and cautioned that the side effects of radiation might be more than I wanted to handle.

Well. Wrong! Yesterday's CT scan, following surgery and months of chemo and radiation, came up clean. Even the areas that looked questionable on the last scan came up clear. Pulmonary embolism gone. No sight of any tumors. All is not quite perfect, however. There is a marker in a specific blood test that does sometimes point to pancreatic cancer, and it is trending up which is a little worrisome. Yet that can be caused by things other than cancer. However, with nothing on the scan, there is nothing  for them to work on.

So today, chemo doc concluded that we have indeed delayed recurrence and improved quality of life (I'm off pain killers for a week and now wide awake) as was the hope when we began.  Can't yet use the word cured or the word remission. But I don't need those words. I'm happy with the word gone, as in tumors all gone.

 Two unusual things happened yesterday. I was encouraged by a friend to hug the scan machine. So I did. And spoke tenderly to it. After the scan, waiting for the van, a good friend from work who I hadn't seen for more than two years, ambled up to me with her hubby. Hugs and chitchat and then learned he was back for a 3 month re-check.  Originally he had been given 12-18 months and very little hope. Now cancer free nearly two years and lovin' life. This kinda coincidence happens to me often enough to know it means something special. Confident it was a sign from Spirit and I was gonna get a clean bill today with three month re-check.  Sure enough it was. I had worked hard up till the doc walked in, to prepare for the worst news as well. This kind of result just doesn't happen with pancreatic cancer.

I don't know that this experience could apply to anyone else. But I'm convinced that faith and confidence and accepting the fear rather than being overwhelmed by it, and getting the most of each day had a great deal to do with this result. And prayer. A lot lot lot of prayer.

Never give up, people. We only have today and this moment anyway.

Namaste

Has it been a full month?  Apologies to anyone who might be looking here for useful information.

We're now a week past the final Gemcitabine treatment. Finally it feels like it's beginning to clear out of my body. Still the annoying runny nose and weepy eyes, and an awful time getting to sleep, but I now feel more "awake" at times during the day. It's a bit of a surprise because I didn't ever know I was less than fully awake.

So now I've managed to make it through all the chemo and radiation they had in mind for me and am feeling not much the worse for wear.  I did manage to sleep through my CT scan appointment last week, so will have to go do that on Monday. I'm a bit apprehensive about it because the bad news option leaves little option.  But must suck it up and go find out what is or isn't down there.

Was thinking a little while ago that I never did notice any difference from missing my spleen, which they took along with the tumor in early October. Why is that? Does it do nothing other than secrete bile? Is bile necessary for anything, really? Aside from making us bilious from time to time?

So that's all for now. Will post again after I learn the results of the scan next week.

Never give up. Today is all we have anyway.

An uneventful but informative visit with Dr N today.  Today begins my "off week" from Gemcitabine. Because my CBC numbers were dropping significantly, I asked him about it. For starters, he was not the least bit concerned about this change. (More concerned about the 4 lb weight loss) and said it's pretty normal with Gemcitabine. In fact, he explained that this is the very reason they take a week break after three treatments. Three is about all the body can take at one time. He predicted that next week the numbers will be significantly back toward normal.

I've mentioned before that there is another guy with very similar pancreatic cancer on the same treatment regimen, about a month ahead of me. I usually ask how he's getting along and when I asked today, Dr N said he was not looking forward to me asking. It turns out the guy had what was a recurrence on the day of his final treatment.  Not much they can do about it except try to retard the tumor growth and ease his pain and discomfort. Will be trying a different chemo regimen designed for that. At least to begin with. This news was a bit of a reality slap in the face. I suppose I've just been taking advantage of all the energy I have to put into the Diabetes and Peripheral Neuropathy symptoms as an excuse to ignore the mortal reality of the cancer. Gonna have to turn my mind toward that, I suppose. So I asked what most people encounter when recurrence comes along. Of course, everyone is different, but substantial abdominal pain and digestive discomfort are pretty common. I will ask Teacher to spare me that as he sees fit.

That's about it for today. Three more chemo treatments and then the PET scan to see what's new, if anything. Here's hoping there's nothing there.

Namaste. Never give up. Life is here for us to do what we can with it. Bud, on the other hand, is here to make me crazy.

So it's been a full month.  Nothing to be discouraged about, and something new today to feel a little encouragement about.

Dr N gave me a three week break following completion of the radiation/5-FU therapy. Had planned for two weeks, but the side effects during the first week off were intense enough to cause him to wait another week to clear that stuff out of my system before starting back to Gemcitabine.

Somewhere I read that the first week following daily radiation/5-FU therapy can involve side effects equal or greater than those during the treatment. That did happen with me. The side effects were more annoying than debilitating, but Dr N  wanted to make sure that stuff was cleared out completely before beginning the next phase so as not to reduce the effectiveness of the Gemcitabine.

The side effects of radiation/5-FU for me were mucositis including inflammation and some blisters from the lips all the way to the stomach. This pretty much killed my appetite, although I could still get hungry from time to time. Continued losing weight through this period and didn't put a stop to that until last week, when I finally gained two pounds, having forced myself to eat half a rhubarb pie with frozen yogurt. Ugh.  Had minor nausea throughout, mostly limited to times when taking medication or eating. I'm sure it was a consequence of the mucositis.

So about a week after stopping the radiation/5-FU therapy, the body began to get back to normal and I started back on Gemcitabine two weeks ago. Was a little concerned that the side effects might be a bit more severe following the experience with radiation/5-FU, but it turns out they have been almost identical to the first two months on the stuff.

One of the fun things that has happened during this period is the way Dr N always asks if I've experienced any abdominal pain during the previous weeks. My answer is and always has been "no", and each time it seems his smile gets a little more broad and the surprise in his voice seems a little more emphatic each time.

The first encouraging thing is one I likely manufactured in my mind, but it was there nonetheless, so I'll take it. After the 30 day followup with the radiation oncologist he said he would schedule me for a six month followup visit. Later that day I realized I had not considered or planned on anything six months out in the past year and it brought a nice warm smile, even knowing it might not be at all relevant.

Now for the (potentially) good news. I asked Dr N to see if he could find an alternative anti-coagulant to the enoxaparin because my medical pharmacy benefit had changed and my co-pay went from $5 to $380 monthly for this subcutaneous monster. Today I got a call from the group pharmacy letting me know that my new prescription for Xarelto (Rivaroxaban) was ready and it should arrive in a few days. This, of course, is for the pulmonary embolism they found in October and apparently is one of the few anti-coagulants that is effective with pancreatic cancer.  Don't know much about it except for the few Internet references I've found, but those look very encouraging. My belly will be happy to be done with the bruising and bleeding from that twice daily injection.

That's all for now. Still here. Still kicking. Still hurting. Still smiling. And still looking forward to tomorrow.

Namaste. Never give up.

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.

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.