And So it begins...........OR So I thought!

Off we went to the VA today to talk to the Doctor about the next steps that need to be taken to start the paperwork to see if Michael will even qualify for a bone marrow transplant....going through the VA it is a bit different....we have to apply by seeing if he is physically and mentally able to even take the tests to see if he would be a candidate....PHEW! Do you understand that?! Sometimes I don't!
Anyhow, the Doctor had talked to us for some 45 minutes and was setting up dental appointments, stress tests...Physic exam...and an HIV test......WHEN BAM!
Michael got hot under the collar.....and HIV test....What for? He had never used drugs...never used needles....WHAT EVER FOR! They have to rule it out...it is just part of the process.....
Well then....there will be no process....
I sat there in total shock.....why would this drawing of blood make any difference....they draw blood from him every week and check for all sorts of things....hell...they might of already checked for HIV and he wouldn't even know it....
The Doctor said she understood....she did tell him that he only has a window of opportunity here to get the paperwork in and these tests done....then sent off to Washington to have someone look them over to see if we can go to Nashville for the candidate testing....and that once the window closes...we would either have to start all over again....or the biggest threat would be that it would be to late to harvest his stem cells....
We all have said it...."WHATEVER YOU DECIDE...I WILL ABIDE BY"....but do we actually mean it when it comes to situations like this....
I tried calmly to explain to him that it was just something they had to do...it was not personal....
But he would have NO part of it.....I think now....hours later....it is just his way of saying....NO...
No more....I don't want to go through anymore....and for that I guess I can't blame him...but if you don't at least TRY how will you ever know if it would of worked?
I thought his decision would be easier for me to accept....

4 comments:

terri said...

oh man.
wow.
i wonder if he'll change his mind...
i can't even imagine how you're wrapping your head around it all....

i think you're right.
maybe he's hit a limit.

how long does he get to figure this out?

Pat Dalke said...

Pattie:

Had you ever anticipated Michael's not wanting to go forward with the procedure leading up to a bone marrow transplant?

From the way that you describe, the VA does work somewhat differently than a standard hospital clinic. But...it does not differ in the stringent procautions they are taking. It's not the transplanting of the stem cells themselves that is so involved, it's definitely the treatment prior to infusing the cells.

Has the entire procedure been explanined to Michael? Dan's stem cells were harvested in 2006, enough for two transplants, and remebering back this was not the daunting procedure. There were several things that were difficult about it:
1) The Cytoxin chemo before the harvesting began, this was infused at the clinic and Dan had a reaction to it and I had to rush him back to the clinic early the next morning. BUT, and this is a BIG BUT, we were told that his reaction to the Cytoxin was rare, we were told most folks do not have a problem with it.
2) The growth hormone shots that Dan had to take each day, at home, which helped to increase the growth of the stem cells. They are not as painful as the shots for thinning the blood that Michael has had.

Once the cells are collected from the blood, in a machine that sounds very much like the machine that has been used to wash Michael's blood, the bags of cells are radiated to further kill any stray cancer cells and then frozen.

To be able to collect the cells would give Michael that back up if the doctors think that he would be a candidate for the transplant AND Michael decides to go forward.

Has Michael been able to envision this process in seperate parts?

It can be very overwhelming when you think of it all together. Maybe if he just considers the harvesting of cells first...

To know that those miraculous cells are all frozen away in case the doctors give the green light and Michael decides to GO FOR IT, can be reassuring.

The decision is soooooooo tough and is sooooooo personal. Has Michael been able to speak to anyone that has had a transplant? It would be good if he could speak to someone of a similar age that has gone through it.

You both are in my thoughts and prayers.

Halo Hill said...

Wow. So very hard. I cannot imagine going through this with the love of my life. I do know that I when my Mom was being transported and then again in the ER and then again in ICU and before every procedure... they asked her if her heart stopped, and she could be resuscitated with reasonable certainty she would be okay, would she still want it done? She said no every time.

I do understand, but each time I wanted to blurt out "She is ONLY 73, she really DOES want to be saved!" I didn't of course, but it was very disturbing. She has a bunch of tests coming up, but we had "the talk" years ago and if anything at all is found, she does not want to be treated. Still feels the same way.

Who can say what we'll feel in a similar situation? It's sad we even have to consider it, especially for someone we love.

I must say I that if I were going through what you're going through with your husband, I don't know if I could be 1/2 the woman you've been. I continue to be amazed by you, and I hope blessings are heaped on you!

Love,
Sheila

Of course I can't imagine

Merry ME said...

I don't know what you're feeling. But I've seen a beautiful girl walk a similar path, hating decisions that were being made but honoring them anyway. It takes a special kind of beauty and strength. It sounds like you have both.

Be blessed. Know peace.