Nothing Left to Do But Wait - Day 100 Has Come

This evening, we had some fun with pizza, root beer floats, a movie and Dance Party 4, which we picked up from RedBox and the kids want for Christmas. If tonight is any indication, I think they'll get it. They had a blast when I wasn't telling them to be careful about and shelves and everything on them falling onto kids who moved too far towards the wall on the right. I think we need to do something about the set-up in our rumpus room. I've got an idea for how to do it, but I can't move anything around right now because I'm still so weak. I wanted to upload a couple video clips from tonight, but the site is being difficult and isn't letting me. I'm hoping Noelle knows how to do it right and can help me. We had a lot of fun watching the kids shake their booties and laughed quite a bit. We need more laughter in our home.

I've been dealing (as has my family, unfortunately) with some mood issues caused by steroids and a bit of depression. I've begun working with a therapist who says it's natural for me to have mood swings and to suffer from depression and anger issues as my role at home has changed and as I've lost the ability to label myself with words that I've always associated with key aspects of my identity like "healthy" and "breadwinner." She says that those things can weigh heavily on a person and negatively affect self-esteem, self-worth and relationships as the anger and depression impact the ways we communicate with others. I've always had a bit of a temper, but it's gotten worse over the last several months and I've damaged the relationships I need to be able to rely on the most right now. My therapist used to be a social worker on East 8 and she's very familiar with the clinical, emotional and psychological issues and losses that BMT patients go through. I just had my first visit with her this week and I'm hoping weekly visits with her will help me (and my relationships with my family) a lot. 

Yesterday was Day 100, post-transplant, which means it's time for a bone marrow biopsy and other tests to see how my body has responded. I try not to be nervous, but it's hard. There's nothing I can do, which is the most frustrating thing. We've done everything we can do. There are no other treatments, transplants or anything else we can do. If the transplant hasn't worked, we'll see a lot of cancer cells, a lot of my old marrow, and no real progress from where we began last fall, and I'll die. If there's been a partial response, we'll see some sort of progress (a good amount of donor cells, decreased cancer cell counts, etc.), but we won't necessarily know where it's headed, and future tests will have to be done to determine that. We could also see a tremendously positive response, with a very high level of my marrow cells being donor cells, few or no cancerous white blood cells in the marrow or blood stream, and a system that appears headed for a potentially long remission. There may even be some other options as far as what we may see, but I don't even know. I just know that what we find is what we find, and there's nothing we'll be able to do about it from a treatment standpoint. We just run with whatever my body is doing. At least that's my understanding at this point. I'm very hopeful about my prognosis, as I have been from the beginning, but right now, the whole it's-out-of-my-hands thing is very real. I've done everything I could possibly do. There's nothing left for us to do but wait to see where my body is and what comes next. 

Noelle has been a saint and an angel through all of this. She has borne the brunt of everything over the past eleven months...nearly a year since my shoulder injury that started this whole adventure. Noelle's influence in my life and that of the kids can't be overstated. She has dealt with the kids' and my tantrums and moodiness with such a Christ-like attitude and demeanor. She inspires and surprises me, even after more than 16 and a half years of marriage. I worry about her melting down sometimes, but she finds a way to keep it together. I wonder if she ponders or reflects on the lyrics to one of my favorite hymns, as I do at times, to hold on when the rope gets slippery:

I need thee every hour, most gracious Lord; 

No tender voice like thine can peace afford.

I need thee every hour; stay thou nearby; 

Temptations lose their power when thou art nigh.

I need thee every hour, in joy or pain;

Come quickly and abide, or life is vain.

I need thee every hour; teach me thy will,

And thy rich promises in me fulfill.

I need thee every hour, most Holy One;

Oh make me thine indeed, thou blessed Son.

I need thee, Oh, I need thee;

Every hour I need thee.

Oh bless me now, my Savior; 

I come to thee.

I'm sure I'll have that hymn in my mind on Monday, as I'm going through my biopsy and other tests.