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.