Hope everyone had a happy Thanksgiving. If you're interested, you can find some pictures of our day here.

We've also received a great gift for which we are deeply thankful, from my brother Jay in the form of a newly remodeled bathroom. Many people have helped with this and we are especially grateful to Sarah (Jay's wife) for taking the bull by the horns and getting it started, to Jim Fox for giving so generously of his time and most of all to Jay, for giving up gainfully employed days to work on this project and making sure we had a pot to piss in every night while he did it. Also to Rubin across the street for his plumbing expertise and to Pat Cosgrove for his help with everything during his most recent visit.

On to the Christmas season....and a whole bunch of healing for John.

Peace, love and hope
Vicki

Visualize this!

Radiation therapy has turned out to be kind of funny - in an amusing way. I had been thinking about visualization to keep me calm and focused on getting healthy rather than the side affects and potential downside of my treatments. I don't remember who suggested to me that I visualize the treatment as the Allies and the cancer as the Axis soldiers fighting it out. I transformed that a little to let the radiation machinery be the ray guns and my people be the good guys and the cancer cells the bad guys.

Then I met my Radiation Therapist. It immediately came to mind that she was Princess Leia, I was Luke, and the tumor was Darth Vader. She's clever and smart and perky and she's manning the guns.

Chemo is not the least bit amusing. It was a very bittersweet return to the infusion room - the nurses that work that room are an amazing group. Ready with kind words, gentle smiles and a little hand holding if you need it or not. I had discussed my return in my survivors Group and one person had mentioned a couple of the nurses by name from her treatment there several years ago, one that had particularly made her treatment more bearable. I also remembered Sherri as especially big hearted, and she remembered me and expressed just the right amount of it-sucks-that-you're-here-but-it's-nice-to-see-you empathy.

The visualization for chemo was more about the calm. So I closed my eyes and thought about Feather Falls. It was a long hike to the top of the falls where we were rewarded by a beautiful sylvan sun-dappled glade. The water was painfully cold, just the right thing for my very hot and throbbing feet. The creek ran through the middle with just enough flow to.....carry the cancer out and launch it over the cliff edge to find it's miserable life strewn about the sharp rocks at the bottom of the 640 foot falls, and me continuing to love life from the top of the world.

Cast in stone

I've talked at length with Chemo Kaufman and any number of his minions. I had a couple of questions regarding the proposed change to the radiation therapy regimen which Lampenfield has answered to my satisfaction (although I'd be so much more satisfied with not having to know Lampenfield or any of his peers). So the action starts the 19th.

I'll be receiving a full dose of gemcitabine at 12:30 PM up in Walnut Creek. Radiation is applied either before or after that (but on the 19th). Then radiation continues over the next 4 business days, and on the next Wednesday, we'll start over again (big chemo and some radiation on one day followed by 4 days of radiation only), for 3 weeks. Then I'll be free to go about my business. This is a relatively progressive regimen that made sense to Kaufman, he convinced Lampenfield, and they convinced me. The rub is that it's more Gemcitabine than they have historically given with radiation. And it's a higher dose rate of radiation than they normally give on a daily basis. But it's "biologically equivalent" to the dose rate that Dr. Lampenfield and I had originally discussed. If I never use "biologically equivalent" in a sentence again it will be too soon.

I feel great. I've gained some weight. There's a tiny place in my brain that is telling me it's all an awkward mistake and very shortly I'll have a phone call or a letter saying "Oops, you can just chill, we made a mistake". OK, so probably not.

I am at peace with the plan. I'm ecstatic that once again the cancer was detected early in it's ugly arc of existence and the doctors feel there's a chance of eliminating it. And I'm achingly thankful for all the loving support I have.

Now let's kick the bastard's ass.

John

New Tattoos

I went to have my Planning CT scan taken yesterday. But when the picture is all done and they verify that I didn't move during the operation, she needed to tattoo little aiming marks on my abdomen and sides. So she says "now, this is going to hurt", and I think to myself, in that smug kind of tone, well how much can it hurt compared to when I got my belly slit open. Thankfully, I decided not to say it out loud because she was not joking. I think she used a knitting needle to get the ink in. Once they do all the calculating and stuff that they do, they use those marks for lining me up on the table. She suggested that I could get a really cool tattoo to cover up the dots as soon as they were done.

The chemo part is another issue. If we decide on using the 5FU, I have to get a port surgically implanted so that I can have some everyday without going to the hospital. Who knew. One of the other choices is a self administered pills, so then you have to muster up the courage to poison yourself everyday. And the last one I'm considering is my old friend Gemcitabine, administered at the infusion room with all the associated needles. Hmmmmm.

The date for radiation is most likely set. On November 18th I go and we have a trial run on the table and they point at the tattoos and make sure that they're doing it right. If all goes as planned radiation starts on Wednesday the 19th. So the chemo has to start on the 19th - any port has to be in by that time, or whatever.

Pancreat Cancer Awareness Month

November is Pancreat Cancer awareness Month. I don't really need it much to help me stay aware of it.

I was diagnosed on May 13, 2007. That year, 37,000 other people got the same bad news. And here's the thing - 36,000 of them died. I have had it so good for so long. For most people that get diagnosed, the cancer has been growing for some long while with no symptoms, growing in an area of the pancreas that doesn't cause any issues that they notice. Mine fortunately made me very ill right away - I remember Kathy nominating me for the show "What not to Wear" because of the yellow sweater I wore to Easter dinner clashing with my skin color. But these others get diagnosed with a huge tumor that involves some major arteries and is inoperable. For many, despite the 'state of the art' treatment, it means they last no more than 2 to 6 months.

And there's the rub. Pancreat Cancer remains one of the leading causes of cancer related deaths, and yet recieves relatively little research dollars. It has been receiving a little more press lately - Randy Pausch was a great spokesman, Patrick Swayze is on a newly experimental drug and doing remarkably well, and Luciano Pavarotti went through a number of operations and treatment options before losing his battle.

Meanwhile, I spoke with Chemo Kaufman on Friday night at about 10 PM (Trick or treat?) and told him that I wanted to start radiation therapy and concurrent chemo therapy as soon as possible. We discussed three possible chemo routines. He's researching over the weekend and I've specified an aggressive progressive regime. So we'll see what he comes up with and decide on Monday. I emailed the radiation oncologist, Dr Lampenfield, and asked him to get me in for the aiming CT scan as soon as possible and we'll speak on Monday about that appointment.

I wonder how many people were diagnosed this last week and didn't get to sweat over these choices. Or how many others are sitting at home without any hope because they're under insured or maybe have no insurance -I'm pretty well insured and this time around the battle will cost another $4000 and some amount of upset to work for both Vicki and I.

And I thank with all my heart all those researchers working everyday to improve the chances of folks like me. I talked to Meg and Jeanine, two clinical trial RN contacts, this week while looking for trials and I couldn't have wished for more genuinely gentle and empathic people. And I sing the praises (a metaphor - no singing for real) of all those people that run marathons, walk relays, have bakesales or whatever to raise money for cancer research, no matter what kind it is.

Thanks for checking, I'll keep you posted.

Ask Congress to get ready for our 2009 pancreat cancer legislation and prepare to co-sponsor this bill in the new Congress!

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