About ten days ago I posted about coming up with an insulting name for the cancer, something to make it shrivel up and get out of town.

A few days later, Sister Suede raised a thought I’ve heard (rarely) from others, that there might be another way to look at it: that the cancer is actually part of me (which it is – homegrown by Yours Truly), and it’s something to have a different sort of relationship with.

I’ve thought about it since then, and I want to explore this. Please play along for a minute.

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All these tumor cells are actually part of me, from me, created by my body.

My rewording of Suede’s observation is that there’s no integrity in viewing it as something foreign. It’s a mistake, and will surely leave me with no power to be effective in relating to it.

So I’m looking for a way to acknowledge that this is actually part of me. It’s a part that may be working against me, and a part of me that I may not like; but if I don’t grant what’s so, or if I make it wrong for being what it is, I’ll have no power (no effectiveness) in the matter.

In this point of view, the game would be to see what that part of me is incomplete about – what that part of me has been unable to express. And while thinking about that, I caught a flash that it could be self-loathing about something.

So I’m looking at granting ‘being’ to some sad or angry or disapproving part of me, acknowledging it, being in compassionate acceptance for the pain or fear that is incomplete in it. I’ll let it get complete.

Mind you, I’m not saying I intend to have a warm fuzzy-lovy relationship with self-destruction. :) But I have a friend who overcame an unbeatable case of hepatitis-C, and I remembered that he used an approach similar to this, among other things.

I’m not about to stop doing all the treatments I’m doing. But I’m also getting a strong sense that it makes no sense that I’d have a self-destructive thing growing inside of me.

And as part of that I’ll look for an additional name for it, a name that embodies the spirit in which I want to transform this thing. The idea is that if the unexpressed can get complete, a new future and a new world of possibility can become available.

We shall see.

Next step is this Weds: first meeting with the radiation oncologist who will zap that femur tumor. I hope to get the whole-body bone scan the same day.

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Great birthday weekend! Ginny organized the best birthday party of my life. A slew of friends & family including daughter Lindsey and beau Jon: terrific food; and the ever-shy (not!) Suede pulled a surprise appearance.

Gifts were centered around the Make Dave Laugh campaign, including a 4-DVD set of Looney Tunes cartoons, and (from Lindsey) the entire first season of Saturday Night Live – 8 DVDs! I am more than equipped for my first hospitalization, humor-wise.

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Taking the advice of many of you, I’m supplementing the surgery etc with acupuncture. Had my first-ever session Saturday. As is apparently common, the first session didn’t produce any big breakthrough. Next session is next Saturday.

BUT, the surface of the bone is intact, which is good.

Treatment: in the next two weeks they’ll zap the femur with radiation. It’ll involve a series of visits. I’ll also get the bone scan that they’d said we would do if needed. (Now it’s needed!)

The forearm x-ray is inconclusive – some deterioration which may or may not be another met. The bone scan will tell more.

Plans for the scheduled kidney removal are unaffected.

If a bone scan shows that there are other mets, then the doc says they’ll assess stabilizing them, which may delay the start of HDIL. He reiterated that my case is so new (this all started just 5 weeks ago!) that they have almost no history on me, and they definitely want a clear sense of what body they’d be attacking with this HDIL treatment. I support that approach!

And if HDIL is delayed, then I may go ahead with the experimental vaccine (a Phase I study), which might produce a cure with very little attack to the body. My only reason for saying no to it was that it would have postponed the HDIL.

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TELEVISION STAR UPDATE: More than I’d hoped!

Yesterday I had WAY too much fun being videotaped at WETA-TV in D.C. MAN did I have fun! All the panelists spent 2-3 hours together in the green room. (Yes, I got to be in a green room. Woohoo!) (It wasn’t green – it was a plain white room with folding tables, free lunch, and a BIG tv.)

The host, CNN’s Frank Sesno, is an *incredible* pro. His voice is richly resonant – my singer’s ear caught that. We did no rehearsing – they don’t discuss questions in advance. He just chatted with us to break the ice, and advised us on a few pointers. (My favorite: ‘The ladies already know this, but men, you too need to keep your knees together.’)

So imagine my surprise when my panel got on the set and after the intro 3-minute video clip played, he turned right to me first and said ‘Dave, I understand you were recently diagnosed with kidney cancer. Has PatientSite made a difference in that experience?’ And we were off and running. (I didn’t know we were going to be talking about my cancer!)

It only lasted 12 minutes and then I ran right to the airport (to wait 4 hours before departure). As I left the room, I said to the woman organizing it, ‘Why YES, I’d be HAPPY to come back and do THAT again!’

I am *way* looking forward to that show. As I said, it’ll air sometime in the spring, which starts March 21.

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Aphorism of the day: ‘Be careful what you wish for – you might get it.’

Last weekend when my knee was hurting I told people ‘I’d be happy to go back to just having cancer!’ Well, that’s what I got! I shoulda said ‘go back to just having cancer with no symptoms!’

Kidney surgery is confirmed for 3/6/07.

The HDIL-2 treatment can begin earlier than I thought! We may start it April 2 or even March 26.

Several people have asked why we’re waiting so long to remove the kidney. The answer is that there are plenty of docs who can do it right away with the ‘big cut’ method, but only one who can do it laparoscopically, which requires just 2-3 weeks to recover. I’m happy to wait a few weeks to cut 2 months off recovery time. :)

[Ginny and I agreed about declining the new experimental vaccine treatment because it would delay the start of HDIL by several months. This is a very early clinical trial - Phase 1, they call it - and there's just not enough reason for me to postpone the better-known treatment.]

Meanwhile I finally have two physical complaints to grouse about, but they apparently have nothing to do with cancer. (1) My knee has been annoying me for 12 days in various ways, and this weekend got bad enough that today I used a cane; (2) my left forearm is being a pain. (Sister Amy the physical therapist suspects tennis elbow.) They had me get x-rays tonight just to be sure they’re not cancer-related.

I would be very happy to go back to the painfree state where all I had was cancer!

Weekly Saturday morning weigh-in: Gained another 3 pounds. That’s 9 total since I got the instructions to bulk up.

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My case was reviewed Thursday by the hospital’s tumor board, and Monday afternoon is when we find out their treatment plan. Then I fly to DC for the PBS thing on Tuesday. More news Monday night when I get to the hotel.

That’s all the medical news for now. Below is some chit-chat. Thanks for tuning in.

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WHAT DO WE NAME THE TUMOR?

Okay, you know me: I’m a brat about just about everything. I heard that some people name their cancer and talk to it. So I’ve been (idly) wondering what to name this thing. Nothing normal, that’s for sure – nothing like ‘Frank.’ I want it to be something really disrespectful, something that would make it curl up in shame and just get out of town. What to call it… it’s a kidney cancer; call it ‘Kid Can’? Naaah. ‘KC’? Bleah.

Thursday I had dinner with daughter Lindsey and she got That Look in her eye. She looked off to the side and came back with ‘How about Reeni? For renal cell carcinoma?’ I kinda like it – it suggests a sneering ‘Neener neener neener, Reeni is a wiener.’

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KIDNEY CANCER ACTIVISM AND RESEARCH

There’s a lot of activism and exciting research going on in kidney cancer.

First, because this cancer is so rare (250-300x fewer cases per year than breast cancer), and several important new treatments have been introduced in the past decade, most MDs’ knowledge (and books) are understandably but dangerously aged. To combat this, the KC community is lobbying to make March ‘Kidney Cancer Awareness Month.’ (Not a catchy title, but what are ya gonna do?) http://tinyurl.com/26xnzn

Second, today I learned of a new organization, http://www.ACKC.org, which is doing some dynamite work. They’re helping fund development of a new screening test …. one reason kidney cancer stats are so grim is that there is no such test, so it can’t be detected unless it’s discovered by some coincidence.

There’s also brand new research that suggests that RCC (my type) is often caused by a virus in a gene. That too is discussed on the ACKC page.

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I’m visiting Mom again in Maryland this weekend, with the ultimate purpose of seeing niece Becky (13) play the mayor’s wife in The Music Man tomorrow. Nothin’ like a Broadway smash with barbershop singin’!

They’re flying me to D.C. next Tuesday, where the local PBS station is filming a pilot program ‘that explores the scope of the health care quality challenge facing America and the promise of health information technology for quality improvement. … the 60-minute pilot program will discuss in-depth how health information technology is changing health care in America. The program will be hosted by Frank Sesno, contributing CNN correspondent and Professor of Communications at George Washington University.’

I’ll be on a panel (with two MDs and a nurse!) during the segment that discusses solutions. I’ll be talking about my hospital’s PatientSite system.

What a life I have.
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Thank you so much to all the new visitors, for all your supportive words in the Guestbook. I can hardly express how it feels to have so many people out there pulling for me.
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Today I signed up to be a walker in the Avon breast cancer walk, which is May 19-20 in Boston. A key factor is that training for it will give me a local community that supports me in EXERCISING! That’s something the doctor told me to do, which doesn’t come nearly as easily as the ‘eat like a pig’ part.

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Today I learned of two web sites that provide other services for patients and their families:

http://www.lotsahelpinghands.com/ is a group calendar that patients’ families can use to coordinate assistance from friends & families – things like arranging rides, bringing meals over, etc.

http://CarePages.com/ is more like CaringBridge. ‘CarePages are free, personal, private Web pages that help family and friends communicate when someone is facing illness.’

Isn’t it wonderful that caring people out there are making services like this available?

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As many of you know, my hospital (Beth Israel Deaconess) has a wonderful secure patient web site www.PatientSite.com where all my medical records are visible to me, including CAT scan and MRI reports, and I can send and receive secure emails with the physicians. It’s an incredibly open process, which really relieves me of wondering ‘what they know that I don’t know.’

Last summer I sent a note to the doc updating him on my blood pressure, and the next thing I heard, he’d electronically sent a prescription change to my nearby Walgreen’s, and it was ready to pick up. No need to get a call back from the doctor, etc. And since it’s secure email inside their system, it’s outside the reach of the wild wild Internet snoopers.

But that freedom brings responsibility: if you choose to look into that section, you have be careful about what you read – just as if you were opening your folder in the doctor’s office. I got scared (briefly) about something I read this weekend, left an email for my oncologist, and got it cleared up.

Of course that also requires doctors who are very open – it requires two-way trust and open communication, and willingness to take what may sometimes be a lot of questions between appointments.

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Kendra Bradley is the nurse who coordinates the HDIL-2 program that I’ll probably be in. Tonight I called to say I asked my email group to send me their stories about the side effects they experienced, because I like to know what to expect before I do something new.

I told her I’m that kinda guy, and she said, in a strong confident voice, ‘I knew that.’ I said ‘You did?’ She said ‘I had you pegged five minutes into our first visit.’ We liked her immediately on that first visit, so this kind of thing is another confidence builder.

So I’m going to paste all those stories into a Word doc for her to read at her convenience, so she can comment on whether it sounds pretty accurate for how it goes at Beth Israel Deaconess.

See, I intend to be *prepared* when I go in there.

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‘Night!

Some of you know that I realized last week that success in this journey doesn’t require a complete disappearance of the tumors. (Disappearance is my goal, of course, but I’ve learned that many people simply stop the disease in its tracks so it never gets worse, or shrinks and stays that way. That would be fine with me: I’d be happy to feel this way for the next 20-30 years!)

And today I discovered that I’m not the only one thinking that way – there may be a shift occurring within the cancer care community. Here’s what the MD posted:

‘I do think that there is a paradigm change occurring in cancer treatment. In the past all anyone wanted to see was a shrinkage in tumor size – whether in a test mouse or a patient. This is still used and is often how a med gets FDA approved. Unfortunately this often does not translate to real improvement in the patient’s outcome – in whether they survive longer and with fewer symptoms.

‘Now people are starting to talk about looking at how treatment prolongs the time that patients show *no change* in their tumors (PFS – progression free survival) and how long they live with their cancer (OS – overall survival). So cancer is being looked at as a chronic disease, much like diabetes, asthma, congestive heart failure, etc.’

Another list member commented later: ‘I have had my thinking adjusted 180 degrees by the idea that this can be a long term chronic thing, not a death sentence.’

As I say, having it stay this way would be fine with me. I’m still going for the big Kahuna, but the landscape of possible ‘We win!’ outcomes is much bigger than it was when I first read those ‘median survival time’ statistics.

This exemplifies that one of the most important things I’ve learned in the past month is to keep thinking for myself and keep asking questions.

Mom, Dave, Lindsey, 1/28/07 - two weeks after diagnosis

One more note: CaringBridge has a Photos link at the top. I just uploaded a photo from last weekend’s trip to Maryland, where Ginny and Lindsey and I went into D.C. to hear Suede perform.

It was a moving experience – something shifted for me during Suede’s performance of ‘Never Never Land.’ It was a transformational moment: I suddenly got something, and my view of the world shifted. I’d been fatigued that afternoon, but I went out with Suede until 1 a.m. and I had no fatigue at all this week (until Friday afternoon), and I’m fine today.

Saturday we got together with the siblings who are local, and that too was rejuvenating.

Suede is an amazing person – generous, deeply into nurturing and spiritual energy, and a deeply soulful jazz and blues singer. A self-sufficient, self-supporting musician for 20+ years, with 3 CDs, a live DVD, and a 4th CD in production soon. www.SuedeWave.com. She’s performing tonight in Cincinnati, where brother Ken will get to see her.

I may not post anything more until our treatment-plan visit on 2/12.

p.s. Did you know the start of Daylight Savings Time has been changed? It’s now the second Sunday in March. This year it’s March 11.

I’d heard the expression before, but it only dawned on me today that it might be relevant to me.

I got a couple of Hershey bars for Christmas and had been ignoring their existence. This morning my eye lit on them and I realized they fit marvelously into my instructions to increase caloric intake.

This probably isn’t what most people have in mind when they talk about chocolate therapy, but it works for me.

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Tuesday night I had two MRIs. One was of the kidneys, to inform the surgeon who’ll remove the offending one. The other was of the brain, to make sure there aren’t any brain ‘mets’ (metastases), because I had two very short dizziness episodes in December. The brain MRI came back negative: no problem found.

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Today the kidney cancer email list mentioned this 20 minute video of a 19 year old Princeton student (from May 2005) who won the International Science Fair in high school for her innovative work on Alzheimer’s, and who now has some amazing thoughts about how cancer might actually come from stem cells gone awry.

Did you know skeletal muscles receive the same tiny pinpoint metastases as the rest of the body, but the mets don’t grow in muscle – only in organs and bone? Isn’t that intriguing? That’s one of the things she talks about.