Wednesday, November 19, 2014

The waiting game.....

I know I missed an update -- been trying to gather my thoughts together on what to write and how to write it.  And the more I gather, the more they scatter!!

We're in the hold-your-breath-and-wait-and-see  stage.   All his scheduled chemotherapies are done now.  The doc said no matter what the results of his next PET scan, he can not have any more of at least one of the particular drugs- it will cause too much heart damage. The scan is set for Monday the 24th, and we'll get the results on December 2nd.

Head is still reeling from some information the doc just dropped on us... and I'm trying to reconcile to myself - does it really matter that we didn't get this information before?  And I'm coming up with Yes, yes it does.

He let us know, that in addition to the follicular lymphoma -- the one we were familiar with and Tex had gone rounds with before,  there was an additional kind of lymphoma.   A more aggressive monster.  Now I know the doc had said this was a super aggressive cancer, and we needed to treat it aggressively.  And then told us the game plan of the R-CHOP (modified for his allergy) treatments, and how many and how long and what to expect.....and then we'd look into the options of stem cell transplants, since that would be his "Best option for a cure". 

So... now instead of fighting just one, we found out there was a B Cell lymphoma - but no other information other than that.  From my research I've found that follicular lymphoma can lead to diffuse large B cell lymphoma - which is aggressive and often fatal within 12 months if not treated. But again -- no confirmation from the oncologist on if this is the type of B Cell lymphoma he was talking about.  Do they consider it metastasized if one lymphoma leads to another? I don't know -- and all these questions were written down and handed to him - and ignored so far.

The second bombshell came when he said depending on the response from BOTH types of lymphoma would determine not only what kind of stem cell transplant could be done, but even IF it could be done.   Woah.. wait... what?   This was the game plan all along - from the first consultation there was never an IF.. it was a WHEN.  The only IF was IF we chose that route as being too risky.  And honestly, I was too much shock and fear to coherently form any questions at the time.  So I wrote these down too, and gave them to his nurse.  I want to .. no we NEED to know what changed.  What happened to "Best chance for a cure" and the doctor's damn-near excitement at this being a great option for him.  Now we're hearing if one lymphoma (don't ask me which one because I was still processing that there were now two!) responds better to the treatment, then they can use his own stem cells- and that is less risk since he won't have someone elses immune system introduced (This is best case).  If the other one responded better and one was left, then they would have to go for a donor, and that's when things get uber-risky. And this is all dependent on if he was even a viable candidate for transplant anyway.  We have "if"  balanced on "maybe"  balanced on "other dependent factors"...  And the only thing I know is this is the type of situation I just have to LET GO and LET GOD handle it.  He has guided us this far, he's not gonna let us down now.

Don't get me wrong -- I don't want him to have to have a near fatal blast of chemo, I don't want him to be in the hospital for God only knows how long and I don't want him to have to go through that, and the complications can be numerous and dangerous. I didn't want him to have to go through ANY of this crap.  But, I also DO want him to be around for a long long long time and I DO want him to be healthy.  If this gives the chance for him to NEVER have to sit in an infusion room again... It's worth looking into at least.

So, in a nutshell that's where we sit.  Lots of questions, not any kind of answers and effectively being ignored until our next appointment.

On the flip side though, Tex has responded well to his last treatment.  He's feeling pretty good, has got more energy lately, and we are all looking forward to having a full house of family and friends for Thanksgiving.  We do have oh-so much to be thankful for this year.  And it marks the one year anniversary of mom and my move out to Texas!

We all wish everyone a blessed Thanksgiving and peaceful, fun and safe times with family and friends!

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