It's hard to describe the color of the air during a winter's storm in the Tetons...



February 7th. Group Email. Subject: I'm back blues

The trip was awesome. I was skiing to my full potential. I ate and drank like a normal person on a much needed vacation. My life was back completely and fully, for the first time in almost 10 months.

Having finally reached acceptance, I came home rested and ready to get on with my new daily regimen of radiation therapy. Then Chris and I listened to the answering machine. Between friends checking in and reminders of appointments that we had missed was the voice of the radiation oncologist:

"There is some controversy over your situation. We should defer the start of your radiation until you have had a chance to talk further with Dr. Harker."


Well, yet another test to keep me on my toes. The next day I basically hovered by the telephone waiting for Dr. Harker to return my call. The new news? It sounds like the tumor board and further research is leaning towards a more aggressive approach to my rare case: Stem cell transplant. Check out more about this procedure at The American Cancer Society's website on Lymphoma (if you want a good scare!)

I've been feeling so good lately it's hard to imagine going back to chemoland. My eyebrows are growing back with a vengeance and I'm quite attached to them; unready to part so soon after they have finally reappeared. My face and head are growing beautifully fuzzy with thin hairs, like wildflowers after a long winter. And I'm feeling human again!

Well, I talk to the transplant specialist on Monday. For now, I'm in limbo. Taking vitamins. Relentlessly cramming calories. Surfing the net for various topics as they cross my mind, like apheresis, Quercetin, Autologous and digital cameras. Dreaming of ways to spend my time before the next wave crashes.

And the worst news of all: Kuma has a cold! The house jester, prep rallyer, prankster and spirit raiser is no where near her usual self. Must have picked something up in the kennel while we were away. Now she is the subject of attention and heaps of love.... Included is a picture of her giving her unhappy look. Wish her luck!

Kuma gets sick once in a while too...

February 12th. Group Email. Subject: An Olde Fashioned Rhyme

The Acronyms are learned,
the decision's been wrought,
the odds are 50/50,
with this new treatment lot.

I have a type of cancer,
that likes to come back,
So we must hit hard now,
with a high-dose chemo smack.

One that will land me,
confined to hospital wing,
for at least three weeks,
till my blood starts re-replicating.

No work for three months,
Intensive monitoring for two,
It's called autologous bone marrow transplant
after this, ski season's through.

For now they'll be tests.
And tests, tests, tests, tests!
So break out the needles,
and hope insurance pays for the rest.

But remember: odds are for doctors,
so they sound like smart dudes.
My odds are far greater,
cuz I got attitude!

P.S. If you want to see the facts,
you can read up past 11,
deciphering the acronyms,

P.P.S. Kuma's all better,
She recovered real fast.
She's just like me,
tough to the last.

February 19th. Group Email. Subject: Return of the Plan.

Here's a more detailed explanation of my next four months.

Month one: Chemo mobilization.
Provided that insurance approves the $50,000 procedure on time, and I passed all the tests I did last Friday, this step should start by the end of this week. I get admitted, they put a central line in my chest in a vein to my heart(which I get to have for the next 2 months). I get a chemo mix, stronger than before, to help the collection of stem cells, and to retard tumor growth while we're "harvesting" and waiting for the transplant phase. Two days in the hospital and then I'm out. But I'll need close monitoring as an infection could become deadly within hours. A week after, I start high dose neupogen(daily shots)to stimulate stem cell growth to the point that they are dumping out of my marrow and into my blood. Collection starts when there is a certain abundance in my bloodstream. Blood is drawn out and filtered for the essential stem cells. The cells are frozen, the rest of the blood is reinserted. This process can take anywhere from 1 to 5 days, 4 hours a day. Once enough is harvested, I am restaged.

Month two: High dose chemo and "transplant"
I am admitted to a special wing in LDS hospital that has spacious, air filtered rooms, special nurses, dedicated pharmacy and all the accoutrements essential for people without immune systems. I start with a week of high dose chemo that is hopefully strong enough to kill all the resistant lymphoma cells. The chemo also kills off my ability to make new blood cells. Without a reinfusion of stem cells, I wouldn't make it. Hence, after the chemo is done, I'm reinfused. The stem cells eventually find their way back to my bone marrow where they set up shop and start making new blood cells. Once I'm stable (they're estimating a month) I am released to home.

Month three: Home care and recovery.
For the first couple weeks at least, I will require 24-7 monitoring. Again, an infection could become fatal within hours as I still will have a weakened immune system. Then I imagine it's back to the watching and waiting game as I slowly recover and get healthy enough for the next phase.

Month four: Radiation therapy.
At first it seemed overcautious to me, but now that I've read several journals about my condition, I completely agree I'll need it. Since my chest tumor was so large when it was discovered, a month of radiation is the best final touch on my insurance against a recurrence.

And that's all there is to it!

Knowing that my life in general is only days away from being put in a blender on "whirl", I initially thought I should try to squeeze in a bunch of skiing, recreating, and good olde responsibility avoidance, while still able to do so. But it's just not me. I feel better living life like today is just any other day. After all, it is.


Pinki lining up for yet another gallium scan


February 22. Group Email. Subject: Plan C and D

It's a funny feeling you get when you realize things aren't going exactly as planned.

It turns out I have a couple issues that complicate the aforementioned plan. And just when I was thinking that I was too young to have any complications.

Issue 1: My tumor is too large to start the stem cell rescue. The stem cell part is a one shot thing, and the Docs want my tumor to be as small as possible, so they've decided to do more chemos aimed at reducing tumor size to increase my odds of success. They will still collect stem cells next week before my bone marrow suffers from more chemo.

VP-16 Chemotherapy used to mobilize my stem cells.

Issue 2: My heart is two weak for the standard mobilization chemo. By ECCO they have found my heart's left ventricle to be operating at 34% instead of the standard 50-70%. This could be from either previous chemos or from current tumor pressure. Thus, they want to use a chemo that requires less of my heart, and more time in the hospital.

(I hope all my friends feel good about themselves for being able to out-ski me lately!)

Plan D: five days in the hospital starting tomorrow. The chemo Plan is to use E-SHAP, a five day ordeal of five chemicals, then collection, more E-SHAP chemo, restage, then to move on to the transplant and eventually radiation. My list keeps getting longer here..

If you're okay with campy violence, check out the movie "snatch". There's a scene in there where two dogs are chasing a rabbit which I find rather reminiscent of my life right now.....

I'm gonna try to keep emailing from the hospital, but it sounds like I'll be a little busy. If you're in SLC, call me at LDS Hospital to find out a good time to visit(I'm sure the snow won't be any good).

Me and my brand new Triple Lumen Catheter.

February 25th. Group Email. Subject: There's been a mistake.

That's what the Doc's and nurses told me after they explained that there was a mix up and that my heart was actually functioning at 100%. It's nice to hear good news and all, but it sure would be nice if it meant that I was getting better in reality and not just in someone's botched paperwork. Anyway, This is no straight road that I'm on, for now, I can handle the curves.

So I'm back in chemo land. My head is thick with chemicals. I'm back to watching movies and huddling on the floor with the dog. I have a triple lumen tunneled catheter hanging from my chest. Sometimes when I move it dangles, clinks, and chatters and sounds as if I was walking through a beaded doorway. The catheter requires maintenance twice a day to keep it from clogging, but it should make life a little more needle free for the next several months.

Today we went back to the hospital for a little lesson on how to keep my catheter sterile. Here's a pict of Chris learning the ropes on my backup, "Chester"...

Chris practicing on "Chester" before she gets to move on to me!


February, 27th. Group Email. Subject: Lymphoma Journal
Well, I've been waiting for perfection, but since that's so far away, I thought I'd tell you all to check out my website anyway. Tell friends about it, especially tell cancer folks about it, and keep in mind that it's underconstruction and half of it was written and designed by me while I was blasted with chemo and other (prescription) mind altering drugs. Well it was a lot safer than using heavy equipment!

So with no further ado, grab a coffee and link to and let me know if there are any problems, thanks!

The secret interior of the "collection" room at the sperm bank