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