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.

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.

Here's what's up, based largely on my Tuesday appt with Dr. Benjamin
Nadeau. aka ChemoBoy Although I met with ChemoBoy several times while
in the hospital, this was my first visit to his clinic. He happened to
be wearing the same disgusting orange shirt he had on at our first
visit. I really wanted to rip it off and set it on fire in the trash
can.

So, here's the chemo plan. Begin on Nov 19 if possible.We're getting a
bit anxious about delaying, but have to get my infections gone before
we start. That also depends on getting a permanent vein port stuck
into my neck so they can pour in the juice more easily than with a
normal IV. I had underestimated the time involved. As it stands, his
plan is weekly for two months on Gemcitabine, the primary popular
standard chemo for pancreatic cancer.Then two months on 5-FU. (love
the name) 5-fluorouracil along with daily radiation.This is the one
that carries the most yukky side effects.Then another two months on
Gemcitabine.

I was pretty encouraged by my visit with ChemoBoy. Perhaps just
because he's been less downbeat than he was in our first meeting. He
went line by line through the mystery of the CBC blood panel results
and explained them in intelligent adult ways. CB was clear about not
getting involved in any clinical trials and not considering some of
the innovative stuff they're doing at Vanderbilt as it really doesn't
seem to work with Pancreatic Cancer. He did say though that their
practice is affiliating with a larger practice in Nashville that is
doing some more innovative things. He referred to these options as
things to consider "if it comes back". Asked him about that and what
he said was it is possible, though not terribly likely that they got
rid of all the cancer with the surgery. If pushed, he's betting there
are some cancer cells running around, likely near the former home of
the pancreas and spleen.

When I asked him why he seemed more optimistic than in our first
visit, he said that he has to be careful and conservative in initial
visits lest patients, in their hopefulness, hear something that makes
them believe he brings a cure.  When I asked him why he decided to go
ahead with chemo and radiation/chemo in spite of my present and past
infections and problems, he said he was wanting to go forward because
he "thinks he can do me some good".  Having no other place to hang my
hat, I'll take that for now.

Generally, each chemo treatment is a couple hours, though they can
last as long as six. Perhaps a good time to do some leg exercises when
I'm not scooting Larry to the barf room.

 Still have the drain in that they used in hospital to drain the
abscess and that will be there till about the 15th. Using a very cool
self administered IV thingy for potent antibiotics.  My legs have
become substantially weaker, and it's now a challenge to stand more
than a few minutes, while walking more than a few steps with walker is
pretty much out. Maybe I can improve that with exercise.

Finally, weight is down under 290, from 350 six months ago in
hospital, which we all think is a good thing. Must work on keeping my
appetite and eating good stuff to keep diabetes from running amok.

These days are pretty much eaten up by getting ready for some medical
treatment, going to the treatment, having home treatments from Nursey,
and dealing with questions that come up about previous medical
treatments. Gets old fast. But trying to keep making at least a little
progress each day