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

Day 9

A pretty strange day today. Began by waking in my recliner to find home health nurse changing a bandage on my IV.  Seemed to suggest the day was pointed downward, but it turned somehow.  Highlights include getting some overdue chores done while working with housekeeper, Tami. Favorite was driving Larry IV (power chair) out the yard to the storage shed and maneuvering it through the wet grass and mud to where I had stored the remnants of RoD. (Ramp of Death). The point? Retrieve a piece of 2X4 lumber to make bed elevator blocks. Found a saw in the shed and even managed to saw the block in half without shredding my hands. Why share? Because elevating my legs in bed this way will keep my lymph edema down, and get my fat butt out of the recliner every night. Just a shred of normalcy at a time when they are few and far between.

Next was a new person coming to help me get a bath. I always get a little anxious about hanging it all out in front of someone I've never met, but I'm learning to live with that. It was a great sponge bath at a time when I must be very careful about skin-borne infections as well as all the others. And it feels great to be clean.

The trip to my long time primary care doc was perhaps the highlight, though I barely made it in and out of the car both coming and going.. He agreed to send a letter supporting my disability claim to the VA based on the draft I left him. This is no small favor, as he needs to edit it, have it processed, copies made and mailed. Better yet, he completed a lab order for the chemo clinic doc asking for three tests and a couple preventive injections they apparently hadn't thought of.

But the real kicker with Dr. O. was him sharing his opinion about my diabetic peripheral neuropathy compared to the obvious nerve damage in the lumbar spine caused by several pretty serious disc problems. His point was that he has never seen neuropathy so serious as to cause the kinds of mobility problems (can't walk a step without a walker) and loss of use of all organs in the lower unit.  Of course, this is not good news for several reasons, the worst of which is that we have to go back to square one with the diagnostics to figure our what if anything can be done to relieve those problems. I suppose it could also call my VA disability claim into some question, although he makes the point that both neuropathy and spinal damage are obviously involved. He just doesn't know how much damage to attribute to each.

What does all this have to do with pancreatic cancer? We the point of taking the time to share it is that I'm learning daily life must go on with cancer and we do have other things to think about and deal with. That's not to minimize the importance and terror of the cancer. But to say that if we dig into life, we can work with it and find a few smiles here and there.

Best to all.