December 5th - The lost post

I am so done with chemo! Yesterday was the last of the three. And as much as I dislike the chemo, I had to cajole the doctors to go through with it.

Thanksgiving evening I left Dave & Kathy's house early - even before dessert. I crawled in to bed with a wee fever. Over the next 12 hours it got as high as 101.5, one degree over the "Call your oncologist immediately or go to the emergency room and be sure to tell them you're on chemo" level. I stayed home instead, and by Saturday morning was back to normal. But my pre-chemo blood test on Tuesday indicated a problem. I was grossly deficient in platelets (good for blood clotting when you're cut) and grievously deficient in white blood cells (good for fighting infection). The chemo charge nurse called and left me a message to not bother coming to my chemo apppointment because it had been canceled and would most likely be eliminated because it was the last one.

So I called, confessed my Thanksgiving fever sin, and declared that there must be a way to get it done. I hadn't come this far to not 'take my medicine'. It strikes me as odd that I was so attached to a treatment regimen that I had earlier decried as a little bit random. I suppose that it evolved into the 'right thing' once I started. I ended up with 3 sizeable lectures regarding the fragility of my health and the sheer stupidity of my aversion to the Thanksgiving day emergency room visit. I made all sorts of promises and got my wish to get my last chemo.

Dr. Lampenfield, the Obi Wan Kenobi of my radiation visualization, was very cool about the whole thing. He blamed it all on the chemo. Six more radiation sessions and then heal up and hold tight for the CT scan and associated blood tests on Jan 5.

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.

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Cancer is so trying

One sleepless night did it to me. I spent the rest of the week in turmoil questioning my decisions and decrying the injustice of it all. But it turns out I was right all along. Radiation with concurrent chemo is the only way to go.

I must have looked at nearly 400 brief descriptions of clinical trials that came up when I searched with pancreat cancer (I use 'pancreat' instead of pancreatic to show disrespect, like when people refer to the Democrat Party). I winnowed it down to 7 that looked like they might work for me. And then I started calling them. I am apparently not sick enough for a trial. One interviewer was sorry that I didn't have metastatic lesions on my liver. How odd. Another trial required a needle biopsy - but since my recurrent tumor is so small and inoperable, we agreed that it was unlikely someone would be able to thread a needle in there without killing me.

One of the studies convinced me that it might really have something new and promising; a gene splitting, stem cell from your own body kind of thing that they ferment and then reinject. But the exclusion rules included previous treatment with Gemcitabine. I am arguing with them a little since my Gemcitabine treatment ended 50 weeks ago, but scientist have their own standards - she did not believe me when I explained how special I really am.

All in all it was just way too many choices of treatment for way too little potential improvement. Kaufman and I will decide which chemo to use, and then start therapy as soon as possible.

I'll keep you posted.

Still undecided?

I got a new Doctor today - I now have a Radiation Oncologist, the delightful Dr. Lampenfield. He wanted to consult with me about radiation, but I think he mostly convinced me that I could make my decision regarding treatment now - why wait another month when nothing is really going to change for the better before that?

And one of the first things out of his mouth is that the his goal of radiation treatment for me is curative. So radiation is in. You get tattoos and everything. He pretty much relieved or minimized almost all of my fears. There is risk of some number of long term side affects, but they work real hard to stay below the level of exposure that raises that risk. And lots of people get by with only one good kidney anyway. What a commitment - 45 minutes a day for 6 weeks? Yikes.

The only question is whether to have chemo concurrently. And why not - in for a penny in for a pound. Running chemo at the same time increases the toxicity of each, but isn't that kind of the goal? And those effects should still fade away once the treatment is done.

Now, I had gemcitabine after my whipple. Dr. Tempero feels that gemcitabine works for me. But most of the available information about use of chemo with radiation is about a chemo called 5FU. Radiation Dr. says I should discuss it with Chemo Kaufman, but I'm pretty sure Kaufman will leave it up to me anyway. So which do I choose? There's a day or two of research to do about which way to go, although sometimes it feels like a coin toss would be just as good.

And I want to spend a little more energy looking into the availability of clinical trials. But I've got a couple weeks I guess. If I call Lampenfield tomorrow to go with the radiation, it's still 2 weeks before the first shot gets taken. Plenty of time for everything.

Here's to moving forward.

Decisions

So I don't have to worry about the intussecption anymore. That's good news.

I went to see the famous and fabulous Dr. Tempero at UCSF for a second (or third?) opinion about the PET scan and what I should do about it. Dr. Tempero is confident that my cancer has come back. It doesn't suck much worse than that.

She doesn't feel that surgery is a good idea, even if it's possible (which Chang says it is not). Nor is radiation. Her take is that we should consider Gemcitabine, the adjuvant chemo drug I took after my whipple procedure, which in my case, seems to have proven track record having kept the cancer at bay for the last year. Her experience says that if people get a recurrence or metastasis following a whipple, it will normally happen very quickly following the surgery. And in my case it has been over a year since the surgery, most likely due to the Gemcitabine. So treatment moving forward should include it. The surgery is not so good because it is focused on a small targeted area and that's not how my cancer works. Radiation works similarly but additionally might damage stuff and cause future problems while not necessarily giving much benefit.

She, like Kaufman, recognizes that while I probably feel an incredible urgency to do something about this thing growing inside of me as soon as possible, it is ok to wait a while and use the next scan to finalize my decision about treatment. And there's the rub.

Kaufman took my case to the tumor board at Kaiser on Friday morning. A bunch of different specialists sit around and look at pictures of my guts. He called last night to let me know that the board had convinced him that my cancer has returned, reinforcing how badly that sucks. His group recommends radiation therapy. This would not be the very focused cyberknife, but the generally less targeted radiation. They are conflicted about whether to recommend concurrent chemo or not - it makes everything more toxic, apparently. So I am going to see the radiation oncologist in the next little bit for a consultation.

So I don't know what to do and I don't know how to make the decision. I'm not as shocked by all the tumult this time around - I always knew that it was possible that it would come back, unlike the first time around when I thought cancer could never affect me or mine. I, like everyone else on the planet, want the best chance at the best quality life for as long as possible. But where is the balance and the tipping point in the choices of treatment? I feel like I have 6 weeks to make a decision and execute it. That's my timeline and I'm sticking to it - December 1st.

Encourage Congress to approve spending for Pancreatic Cancer Research

Take Action Now!

We need you to RAISE YOUR VOICE a little louder!

It’s time to show our appreciation for the hard work of Representatives Eshoo & Brown-Waite! While we’re at it, let’s ask Congress to get ready for our 2009 pancreatic cancer legislation and prepare to co-sponsor this bill in the new Congress!

1. SIGN THIS ONLINE PETITION! Show your support for our historic legislation, the National Plan to Advance Pancreatic Cancer Research Act of 2008 (HR 7045), and thank Reps. Anna Eshoo (D-CA) and Ginny Brown-Waite (R-FL) for introducing it! Our goal is to get as many people across the country to sign this. Click here to sign today!
   
   
2. NEW ACTION ALERT! Ask your U.S. Representative to co-sponsor the National Plan to Advance Pancreatic Cancer Research Act in 2009! Let’s get started early by educating Congress about this potentially life-saving legislation and getting them fired up about it now! Click here to Take Action!

Be sure to use the Tell a Friend feature on any of the Action Alerts above to ask your friends and family to join you in turning our message into a pancreatic cancer advocacy movement!

Scanning

On September 4th I had a sort-of-quarterly CT Scan and Chemo Kaufman told me there was something wrong with it. I had something called an intussusception and that had to be taken care of as soon as possible. So he spoke with my most excellent hero Dr. CK Chang, the author of my whipple. Chang wanted a PET scan so I went to get one. This is where things get confusing - a PET scan automatically comes with a CT scan so people can see where any PET scan "bright" spots (generally not good) are really located. Well, I have a bright spot. To some, this indicates a recurrence of cancer. To others, like the good Dr. Kaufman, it could be caused by something happening near the scar tissue and re-plumbing liberties that came with my whipple. But there is no longer any indication of an intussusception.

Now Kaufman says I don't need to worry so much - when someone has a recurrence of pancreatic cancer it shows up as bright spots everywhere, you feel really bad, and as Kaufman says, "the end is nigh", and that's not the way this looks. But then I go see Chang and he's very sorry, he 'doesn't like to operate' in these cases, and he recommends some radiation and some chemo. Right now.

That was about 10 days ago. I started requesting copies of my records so that I could go get another opinion. I cracked down on my diet so that I could eliminate the confusion that pancreatitus wreaks on blood tests. I stopped sleeping and buying green bananas.

I took an enzyme test yesterday, the proof against pancreatitus interference - the results came back all good this morning so I went and gave more blood for the tumor marker tests this morning. Those results should be back sometime Thursday, probably when my brother Steve and I and my friend Jim are making the turn at Wente Vineyards golf course.

I wish it was just an intussusception. I've never been real keen on making detailed plans that MUST be adhered to, but I'd give my left arm for a plan right now - good, bad, or whatever. I have things to see, people to meet, and children to help move out. I feel great physically. Most of the time I feel good emotionally, too. But let's have a plan.

Thanks for checking -

John

We Remember

Today I received this as an email that asked that I forward it on to everyone. I'm not huge on burgeoning people's emails with chain mails, so I thought I would put it here because it is a great sentiment.

WE REMEMBER

All you are asked to do is keep this circulating.
Even if it's to one more person.

In memory of anyone you know that has been struck by cancer.



A Candle Loses Nothing by Lighting Another Candle.

Please Keep These Candles Going!

This one, I do ask that you send on.

We hope that all who are still tuned in are doing well. We are still getting on with life, which is good. There are many challenges, but nothing we can't handle as long as we have our health.

In 2007, we were anxious for it to be 2008. Now that we're here, it's good, but we are now looking forward to 1-20-09 and the blessed end to a completely different kind of nightmare.

Be well and continue to work for peace.

Celebrating survival - One year in

I don't know if anyone is still listening or checking in. I couldn't blame you if you didn't because we don't keep up. After looking down the abyss of life and death, we've been trying to concentrate on life and living and it's been a good thing.

John is back to work. Taryn is back to school (and still working a ton), Vicki got a job working as Executive Assistant for the President of the Boys & Girls Clubs of Oakland, Elliot got his braces off and one step at a time, life is going back to some kind of normal. We think daily about how very lucky we are and very often, my last thought before I go to sleep is "life is good".

John has had 2 scans since the end of chemo and the last one, 2 weeks ago, showed that he has a case of pancreatitis, but it also shows that he has no cancer. What a blessing! We can deal with pancreatitis, we can deal with the nutritional problems of having a partial pancreas and yes, we could probably deal with more cancer, but it sure feels good not to have to.

In honor of cancer surivors and victims everywhere, alot of people do alot of walking and we have a good friend who is training for a marathon Walk for A Cure. John (and his brothers) are big on the haikus and he has written a couple lately so I wanted to post them for you all. They made me cry and I'm pretty sure they will touch others hearts as well.

Marathon for the Cure

Searching for a cure.
Survivors, victims and us.
It's been a good run.

Anniversary

Today, one year past,
Chang gave me a second chance.
And my brothers came.

Continued love and gratitude
Vicki