Monday, November 30, 2009

Back to the Big House

Today I will be readmitted to the hospital for my bone marrow transplant. I will have five days of chemo and will have my actual transplant on December 8th. Here is a brief primer of what actually happens with a bone marrow transplant.

First step: identify a donor. Every cell in your body carries a protein marker called a human leukocyte antigen (HLA) that identifies it as being uniquely yours. It is important to match these proteins as closely as possible between the donor and recipient to avoid problems like graft versus host disease and rejection of the transplant. These proteins are determined genetically, so the logical and easiest place to find a donor is in the family. My brother and sister were tested the first time around, but of course they don't match me. They've never been of much use to me anyway. Only about a third of people needing transplants actually do find a match in the family, and the rest of us go to the national donor registry to see if someone there matches us.

Step One has been accomplished. A 27 year old male donor from America has been identified as a perfect match and has agreed to be my donor (I know I told some of you that he was 25, but I was given incorrect information). What are the chances that when we're allowed to meet we'll fall in love and get married? I should get some kind of benefit out of this!

Step Two: Recieve chemotherapy to kill off and kick out current bone marrow to make room for new bone marrow. I'll be getting two different chemotherapies, clofarabine and busulfan, Wednesday through Sunday. Monday will be a rest day. We have to get rid of my current bone marrow before I can get another one, and the chemo will kill off some of the remaining cancer cells. Even though I had a complete response to chemo, that doesn't mean all the cancer cells are gone. We know that some are still there, we just can't see them.

Step Three: recieve the actual transplant. December 8th is the big day, Day 0 in transplant speak. The transplant itself is just a simple intravenous infusion, exactly like a blood transfusion. No surgery. I will start taking immunosuppressive medications to prevent graft versus host disease. Then the fun part starts.

First we have to wait for engraftment, which is when the new bone marrow starts growing and producing cells. The bone marrow cells will actually find their way into the bones on their own, but sometimes they don't. This is a critical step. Engraftment usually happens around Day 10-12. Once I have a high enough white blood cell count (produced by the new, engrafted marrow) they will discharge me from the hospital and I can go home. Last time I got out on Day 17.

While waiting for engraftment I won't have a functioning marrow, so I won't be producing any white blood cells (immune system cells), red blood cells (carry oxygen around your body), or platelets (clot the blood). I'll be getting transfusions of red blood cells and platelets but you can't get white blood cell transfusions (see above about HLA typing) so I will be at very high risk for infections and will have to be extremely careful. LOTS of Purell.

In fact, I will have to be extremely careful for a very long time after transplant because my new immune system will be like a little baby - very weak and not knowing what to do, and I will loose all of my immunizations. Any infection could kill me, so for the first 100 days after my transplant I will not have visitors and I will only leave the house to go to the doctor. After Day 100 I will have some visitors again and perhaps venture out a little bit more. I haven't really decided what to do after Day 100. Last time around my doctor had very restrictive rules and told me not to go out for a year after transplant, so I didn't. I hardly saw anyone outside of my immediate family and I only left the house to go to the hospital for an entire year. It sucked a lot, and once was enough. I don't want to do that again, but it's hard to know how to balance the whole not wanting to get sick and die thing with the not wanting to die of boredom thing. To be determined. I'll also have to follow a low microbial diet (aka neutropenic diet) for the first 100 days - no restaurant food, no raw fruits or veggies, no raw or undercooked meat, no moldy cheeses, etc.

See why I spent so much time going out to public places and eating things this past month?

This is just a rough overview and I'll go into this in more depth later. For now I am going to enjoy my last few hours at home as a free woman and spend as little time thinking about the transplant as possible.

12 comments:

shannon said...

You will be in my thoughts!! Lots and lots of luck, my friend!

kiwi in france said...

It sounds like a long process, but you can do it! it would be like a fairytale if you end up marrying the donor guy! Bon courage :)

Leesa said...

Hey Mir...

Wow... I knew it was very involved but to read it all is just incredible! I will definitely be thinking of you this week... next week.. and for 100 days... after.. I can totally understand not going out to catch any germ possible..
When do you get to contact Mr. Donor? That would be cool if you two hook up and get married one day.. .

All of my good energy and vibes are headed straight to you as I type!!!
Love, Leese

Leah said...

Bon courage to you for all that is to come! Can you at least get a photo in the meantime of this hot donor stud? :)

Lauren said...

i found you through JT's twitter (i get really bored when i can't leave the house and turn into a little bit of a creeper...)

did you teach in france through a program?? i was supposed to go this year through the French Culture Assistantship, but had to pull out even before i was placed after i got diagnosed with hodgkin's in may... i'm crossing my fingers that my onc might approve me to go NEXT year if i can get placed in a city with access to a hospital, but i'm not going to bet on it...

good luck with your BMT - i have my first set of post-treatment scans in a week, and i'm really nervous...

lauren
www.papergownsupermodel.blogspot.com

Monique said...

GOOD LUCK!!! I'll be thinking good thoughts for you the entire time :)

Rose said...

Questions:
1. Are bone marrow donors living?
2. What on God's green earth are you going to do for 100 days without any visitors??? That sounds inhumane! How many movies are you going to watch? How many books are you going to read? I expect a champions solitaire player to emerge from that bed.

I keep reading your entries and you are in my thoughts. Thanks for explaining this to us so concisely! Best of luck sweetie!!

Zhu said...

I'm surprised to learn that it is a "simple" intravenous infusion - the word "transplant" carries meaning of surgery etc. Of course this is better for you, I don't like the idea of you having surgery!

The post-surgery sucks big time. I'm not the most social person yet not going out at all is tough.

That said, time does go by fast and I hope you can find cool activities - write a book, distance studying, planning for an awesome trip once this is all behind you... the possibilities are endless!

We, the readers, will be there for you :-)

Amanda said...

Bon courage! Good luck! To echo Zhu, we, the readers, are here for you. Sending good thoughts, prayers and lots of love your way! :-)

au soleil levant said...

Thanks so much for all the good wishes everyone!

As far as my donor goes, it is an anonymous donation from a living donor. We are allowed to exchange anonymous letters for the first year and then after that can choose to exchange contact information and meet. Can't wait!

I have no idea how I am going to occupy myself for 100 days. I will be watching lots of movies, reading, watching TV on the internet, crochet-ing an afghan... basically doing whatever I can to occupy myself. Any suggestions are welcome!

Lauren, yes, I went to France through the assistansip program! Am more than happy to talk about it with you. I went after my first transplant so it definitely can be done. I'll drop you an email. Good luck with everything!

Mary Community Farm Kitchen said...

wellll, I must say that you are already getting some benefit from your marrow-transplant dude. However, like everyone else here, I am hoping that you are able to make another kind of match besides just the "hmm we have similar dna" one!
In other news... blessings and good luck! You did it once, you can do it again. xx

au soleil levant said...

You're right! I'm an ungrateful recipient! Thanks for the confidence.