Sigh. of. relief.

As I posted on Facebook, I had my day +84 bone marrow biopsy yesterday.  It's kind of a critical one, because finding any leukemic cells in the first 100 days does not carry with it a very good prognosis.  It basically means the transplant didn't work, and the body can't usually handle another transplant so soon, or even the high-dose chemotherapy you need to treat AML.  A person can still relapse months or even years later, but it is not nearly as critical of a situation (although still not a great prognosis).  Also, if I still had abnormal cells, I would not be released at day +100.  We'd have to stay for who knows how long.

Anyway, I of course have been worried about this biopsy since my last one 54 days ago.  I just got the results of the flow cytometry from the biopsy and they showed no abnormal cells!  There are still 2 other tests to go...a pathology report and the chimerism report (which tells you what percentage of cells are my old ones and how many are donor.  My last one was 100% donor, which is what you want.  Other chimerisms are possible as long as the cells that come back are not leukemic).  I also had a skin biopsy to see if I'm still having GVH of the skin.  It's still a little bumpy in places, so I'm thinking I do.  But I am so relieved I have gotten through the first 100 days without a relapse; and that the transplant worked!  Also, I won't have another bone marrow biopsy until August, unless something happens before that that worries my doctors.  I probably don't have to tell you, it is not a comfortable procedure so that's good news too.

Last week, Brett took Luna to San Diego for a few days, and my mom came up to help Jo take care of me.  Not that there is a lot to do, but I thought it would be nice for Jo to have a break from being responsible for other people for a couple of days, and if anything scary happened, it might be more comfortable to deal with as a team.  Brett and Luna had a great time, despite my missing them to pieces, and I took the opportunity to try to do more things myself (like hooking up my IV and flushing my lines and remembering my pills and whatnot).  It went well, but I still needed help remembering things. Good old chemo brain. And Jo was much more masterful of the IV pump than I was.  But overall I was feeling a lot more confident about taking care of myself when we're back in Sac and Brett goes back to work in January.  But of course, the other-damn-thing rule came into play and my crazy, intense back pain came back on Saturday (I stopped my steroids again last Tuesday).  At least its not the headache, but I can barely walk at times.  So frustrating when I am sleeping again, not nearly as fatigued as I have been, was getting out a little bit (a special Picasso exhibit at the museum, and the mall), and have been in much better spirits all around.  Oh well, I guess it won't last forever.  But if it lasts until the next Ommaya injection, I'll be a little annoyed.  My team said they were going to talk to the neuroncologist about these side-effects since I still need 4 more Ommaya injections and clearly the Depocyt (the chemical used) is extremely toxic to me.  I know, I know...what treatment have I had that isn't extremely toxic.  But there may be other options.

In other news, they cut a few of my pills which is nice.  One of the pills is a really crappy one.  It dissolves super fast and of course tastes terrible, but is hard to swallow quickly because its shaped like a trapezoid.  Seriously, who engineers a pill like that?  A trapezoid?

I also have to mention a book I read recently called "The Emperor of all Maladies: a Biography of Cancer."  It's a fantastic read about the history of cancer occurrence throughout history, about the development of treatments, the biology of cancer, and its role in society (and society's role in cancer research too).  It may sound depressing and there are definitely sad parts, but on the whole, its hopeful.  Which is nice.  I suppose it would be pretty jerky to put out a book about how hopeless cancer is.  The author is an oncologist and researcher and a great, readable writer.  I couldn't put the dang thing down.  It's a brand-new book still only in hardcover, but you can get it on Kindle for a reasonable price.

Anyway, with the biopsy out of the way, I can start all my discharge testing this week and next.  So we can get a closer look at the physical mess I've become and can plan my maintenance care for my doctor in Sac.  I just need to say infection-free now.  Jo left today to prepare for student teaching back in Carson City.  I can't get over what a gift my sister has been for us over the past few years.  I miss her already, and I know Luna does too, but I'm excited she's getting her career started.  So Luna will come to clinic with us for a few days, which delights everyone at the clinic.  Then my mom comes to help with Luna for a little while.  So that's the plan-ish.

Ok, I have to add this in.  Just about 2 minutes ago, my medical supply delivery people knocked on the front door and Brett went to the door saying, "Come on, Luna!  Let's see who's at the door!"  Well, Luna started crying and climbed into my lap in a panic, hiding her face. After she composed herself, she said, "I don't want to go see Santa!  He's scary!"  She thought Santa was at the door!  I completely get it...I have never a big fan of the Santa story as it is so full of holes.  And since we don't have a chimney, what am I supposed to say?  He comes in through the window?  He picks a lock and comes in the door?  Both sound creepy.  So I never talk about him.  I'll let Brett handle Santa this year.

Hope you all are getting ready for the holidays without fear.
love to you, j