Wednesday, March 5, 2008

Cold Hard Facts: I Do Requests

In my last post I put it out there. If there is info that you want I want to provide it. My good friend Beth who moved to Napa a couple of years ago with her hubby Marco and beautiful daughter has requested to know what is really up. What the diagnosis and prognosis is. I imagine there are a few readers wondering the same thing. Honestly I am not paying much attention to long-term prognosis. I intend to set new records in that department so I don't want to even know what normal is.

Here is what I know: I have multiple myeloma and am in stage 2a. The goal is to get to where I no longer have any syptoms of multiple myeloma. I started taking thalidomide and dexamethazone (sp?) last Monday. The oncologist says I will continue with that for 3-4 months with the idea of getting my blood and bone marrow as cleaned up as possible. Once we have got to a plateau in terms of improvement of blood numbers, then I will go for a Bone Marrow (stem cell) transplant.

That BMT will be Autologis which means I will receive my own bone marrow that will be harvested from me, cleaned up and put back into me. That process will take 4-6 weeks of being in the hospital at Stanford. In order to put the bone marrow back into my body the doctors have to basically turn off my immunity so that I will not reject the new bone marrow. I will be in complete isolation for a couple of weeks while that happens. It is likely that will take place in July and August. So I wont be going to the death ride this year. I wonder how much of the Tour I'll be able to watch... I will be pretty weak and worn out after that happens so i will probably take another month or two of recovery before I am back and functioning well.

Also in the mean time: the spot that has been giving me the most pain lately is my left clavicle. I have a large hideous tumor on it and the bone is just plain coming apart. This makes it painful to carry anything. To sit up for any period of time and my back neck are reshaping around it so I am just plain in a lot of pain over this. Massage from Heather and sitting in the Hot tub have been a key in combating this.

Next week I will start radiation on that tumor with the hope of killing that particularly bad spot. I have high hopes that the bone will start to re-grow and start doing its job again but it is possible that it wont and I'll have to talk to the orthopedic surgeon about what to do about that.

Collateral Damage: Another thing that I do know is that the problems with my hip are not cancer casued. I have avascular necrosis of my left femoral head. That means there is a dime sized chunk of bone on the tip of my femur that is dead and not likely to repair itself once my bone marrow is funtioning properly. It is too soon to tell what exaclty will be done about this but I am thinking it will be a hip replacement surgery. Basically what Floyd Landis did. I'll get a metal femur head and they'll clean out the joint and put me back together so I can start training soon.

Outlook One of the things that we have learned is that survivor statistics for MM are mostly wrong and out of date since so much has been discovered about treatment and diagnosis in the last five years. They say that it is incurable but the reality is that plenty of people go years and years with out showing symptoms. That sounds like cured to me.
Moreover, I am a very unusual MM patient. I am not over 70 and black. I am at the very young range and I am much more healthy than most who get it. That is to my advantage. For example most older folks who are diagnosed with MM do not get BMTs because the risk benefit does not work well for them. My treatment is as aggressive as it gets and I am standing up for it really well thus far. Frankly, I can take a lot more punishment than I've got so far.

I try not to pay attention to the survivorship numbers because I just plain don't feel like they apply to me. I am too out of the box to start with. I plan on setting new records.
Honestly though, I have moved my mental life expectancy up. I have always envisioned growing old with the chickenhawk. I really thought that 80 or more would be how long I go. Now I don't think that. I do think it is realistic that I'll be around pissing everyone off for another 20 years or so. But who knows... No one knows. I can tell you when I am cancer free, I am unlikely to go back to the track of working full time til I am 65 and then retiring to enjoy my golden years. I want to take more of my life NOW to savor those golden moments NOW. I want to teach my girls to sail. I want to ride and paddle with my buddies. I want to enjoy sunsets. I want to serve my fellow man that I might pay back a little of what I have received through this miracle.

Any other questions from readers. Drop 'em in the comments. Thanks for that one Beth. It was good to write about it.
Thanks for reading


Reagan said...

The sad part is that we should all be taking advantage of life NOW but too many things get in the way. Thanks for the realistic update.

Pedaldork said...

Thanks for keeping us up to date. My question is, do you need anything.....donations, medical supplies....we own a medical supply company and if you need anything please let me know.

Anonymous said...

You inspire me Spence. XOXO

Anonymous said...


What a trouper you are! Roger and I are following your fight and are truly inspired by your attitude and your gift for writing. We are thinking of you constantly. Hugs, Sally

Judi said...

Spencer, thanks for the post. Once again I am sitting here at work with tears in my eyes.

bikesgonewild said...

...thanks, beth, for asking & spencer, for answering the questions i was being too polite to ask, simply cuz i wasn't sure if it was right for me to do so...
...(hey, no chuckling about me being polite, please)...

...when i read up on mm, i was at first stunned but only for a second immediate though was: i hope spencer doesn't buy into the "facts" or it will affect how he proceeds...

...i'm glad to know the love & strength between chickenhawk, spencer & the girls is transcending the ugliness of this situation...sometimes the "miracle" needed is simply clear thought &, i see a lot of that here...

...& pedaldork, you are one very amazing guy...what a beautiful offer...

Anonymous said...

Read this about statistics and cancers...

lil blue schwinn said...

While the cancer diagnosis is not a good thing,
it is amazing the good that has risen from it;
it causes everyone who has touched your life to examine their own life, both internally and externally.
When they look within and feel a compulsion to step up and pitch in, we are encouraged that good can come from this.

Then those same people examine the circumstances of their life
and change their attitude to one of gratitude and humility and
realize (hopefully) that their blessings outweight their “problems.”

We see that while cancer is your diagnosis and has changed your life, it has shown itself be the recipe for positive and probably dramatic change in the large circle of community that surrounds you.

I/we are tremendously impacted by not only your diagnosis and inspiring attitude,
but also by the kindness and generosity of all who surround you.

Love & gentle hugs, Cris

Anonymous said...

Screw the statistics,
those are for average donut chugger kind of people not for heroes like you!!!
Love, pantani.

Sorelegs said...

Was it Mark Twain who said; There are lies,damn lies and statistics.
Pedaldork, to answer your question, we are set for medical expenses now. Our insurance is good in that respect. However, we will be looking at doing some sort of fundraising to get the family though the next year. We have OK reserves but they will be gone soon enough with me not working. And the added expense of goingn to stanford for the BMT. I will get state disability eventually but how much... we dont know. So stay tuned for a fund raiser. I think a couple bike shop owner friends are talking about doing a race or a century ride. I am all over that idea but we'll see.
Lil Blue, Noey, Pantani, I love you guys.
Reagan you choose what gets in the way. It is up to you brother.
Thanks all for the kind words and support.

bikesgonewild said...

...note to self: remember to eliminate any "hammer nutrition" products from any bottles to be handed up to sorelegs, at least 'til the controversy is cleared up... check musettes for same...

ronaldo said...

Spence, I've been waiting a long time to watch into the wild. I finally got to watch it last night. It reminded a lot of our off seasons from working on the river, tripping, cruising, looking for adventure and living in the moment. It reminded me so much of us in our 20's. Mud Pie and all. I don't know what this has anything to do with anything and with right now, except that we are passionate about the outdoors, you and I like to read Krakauer and that could of been any of us. So it made me think of you and how this trip is a bit like going into the wild for you. Ultimately it's up to you and your attitude. And your attitude is so right on!

Big kisses to the girls and Sarah, your powerhouse chica. Thinking of you, I am with you. (Is it ok I got a girls bike with baskets? That's what I ride everyday).


Tessa said...

Spencer, I would love to participate in a bike fundraiser, or even to help organize that. It seems such a fitting way to raise money for you guys. I'm constantly inspired reading your blog and think about you and the family all the time.
Love and hugs,