Relationships

It's not that I haven't had anything to write. It's just that my head has been spinning. I just couldn't focus and really couldn't hold a pen (or laptop) until right now...

The best news of all is that they are completely willing to work with me at Sloan Kettering. In a way, there's nothing more to say?!  But, I'll say more anyway...

Seeing Marty Tallman was a warm reunion and reassuring. You can tell that the folks at MSK are no slouches. In anticipation, I was worried that we'd walk into the building and it would feel like a Big Pharma Cancer Machine. But it didn't. Not at all. It feels family-ish.  People are warm, with BIG senses of humor and big hearts and big brains. When I was getting my blood taken, there was a pamphlet tacked on the corkboard behind the nurse that read, "Relationship-Based Care". Isn't that cutting-edge? I think so. 

The biopsy went extremely smoothly because I had Allison there with me.  She drove down from Cape Cod and held my hand for three days straight. She stroked my hair and made me laugh and we played songs off my playlists that we used to sing when we lived together in NY after college.  The sweetest of those songs that day probably being the Beatles, "Here Comes the Sun".  Plus, the doc who did it was a smooth mover. Not too painful...

I wish the results of my biopsy had been better. They're not horrible but not ideal. I went back up to 14% blasts in my marrow and now 2% in my blood. Not great. But at the same time, my platelet count is very very good. And platelets are the first thing affected by leukemia. So, I'm chugging along.  

But since my blast count is up a bit, I must do yet another round of chemo with Marty. Then after that, I will quickly begin the "conditioning regime" with Dr. Sergio Giralt, for my transplant (which basically means even MORE chemo).  

The 15th floor at MSK actually is a solarium and has an outdoor space that I will be allowed to go out on during this first round. It will absolutely save my mental/emotional/spiritual butt.  When I go to transplant, that will be on the 8th floor and it's much less of a party. According to the calculations we did with Dr. Giralt today, if I start this chemotherapy on this coming Thursday, (God willing all my organs test out a-ok and I can start) my date for my new beautiful, brilliant, life-saving stem cells going in will be August 24, which is Allison's daughter Arden's birthday! I love that! 

It was a tough week for me emotionally. I have NEVER missed my family as much as I did this week. Having that time with Ari and Andy in Greece was a precious gift and a beautiful reminder of how close we are. And having Isaac be away at camp for four weeks...it feels like forever! We're all in different places and honestly, I hate it. But, as my wise friend Heidi says, "It's Life".  

This will be a long haul. After I get the cells, I'll be in the hospital for maybe 5 more weeks. Then I can stay somewhere nearby (no idea where yet) and I will need a 24 hour a day caretaker to be with me at all times until I can go home in December. THAT is a hard one. Who has a 24 hour caretaker?? I don't have a mommy. My husband is holding down a fort that includes two boys, a dog, and a very consuming job, in another country...

I will need help. I will need to maybe ask friends to take turns. I have been leaning so hard on my friends. So hard. But I will need this so that in the future I can be there for them and take care of them.  And in the meanwhile, play, laugh, explore, support and love them like they've loved me. 

My friend Arpine was with me yesterday all day after Alli left. I love her dearly and one of my favorite things about her is she takes pictures of everything. Both her parents were photographers and she got the gene. She's completely captured relationship-based care in two photos she took of me with Marty and with Sergio. It's all about relationships.