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.

Not sure which day this is, but it feels like a turning point, and not necessarily a good one. I began radiation therapy in earnest this week and I've been troubled and anxious about it for weeks. The main problem is that my peripheral neuropathy condition makes it very difficult to get onto the radiation "table".  It takes one tech to lift my legs, while two hold my shoulders to keep me from sliding off the table.  Clearly this facility is not designed with disabled patients in mind. Seems ironic and absurd to me. The people are great, and that helps make up for it. It's as though they know patients are struggling with the facility and the procedures and they have to be on their toes to offset that. Whatever the reason, I'm grateful for that part of it.  Five days per week for twenty eight sessions. Two done, bunches to go.

Today we also began Flouorouracil (5-FU) chemotherapy which is intended to facilitate or enhance the radiation treatment. I'd prepared myself for the weekly chemo treatments, but was surprised to find the doctor decided to use a continuous infusion pump instead of weekly IV infusions. So I have this damn pump in a bag strapped around my neck for six weeks. This is and will continue to be annoying as Hell. I'm so sick of tubes pouring stuff in and draining stuff out. It's like I needn't be here at all, so long as the tubes and pumps are doing their jobs.  They say the side effects with 5-FU are generally less severe than with Gemcitabine, which I tolerated very well. Doc said I'm more likely to suffer side effects from radiation than from the chemo.  Gotta remember he's trying to cure me of this menace when we approached the treatment thinking cure was not a reasonable option.

That's the troubling part of the day.  I asked him what he meant when he said, at the onset of treatment, that he "thought he could do me some good."  His response today was that although the odds are against us, it's not impossible that we will cure this monster. So long as it's not making matters worse, it's therefore worth doing the treatment. He suggested that the secondary objective was to delay recurrence, which is frequent with pancreatic cancer. And suddenly mortality hit me in the face. Because he said that when recurrence occurs, there is essentially no cure and the cancer will kill you. So in that regard, it's a matter of buying time. For what? How can I use this time to benefit those I love?  How can I use the time to experience the fullness of life? Finally coming to encounter the reality of pancreatic cancer. And it's no fun. Could use some ideas here, folks.

Stay tuned. And don't give up. Ever.

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