a mass email i sent out nov. 15th

this is an email i sent out to people on my email list, that i think is really important and gives people more of an understanding about what will be happening to me.
since, i have written this, we have had two successful bone marrow drives that have brought in over 100 new donors. that is a start.

Hello,
I am trying to put out an email once a week with what is going on with me.
First of all, I might do this every email, but I really need to thank everyone for being so supportive and responsive. At 26 to have something as intense as this happen to you, you really see the beauty in people. And you also find out other people's stories that are struggling. And you just develop more of a deeper passion for this life, but not only life but for human kindness.

Speaking of human kindess, Chris Garneau is putting together a benefit concert at the Living Room in New York City.
Chris Garneau has brought together Duncan Sheik and Jenny Owen Youngs to play a show with him. Duncan will be headlining the show. This is an Elliott Smith type tribute concert where the musicians will do songs by Elliott Smith and then some of their own stuff. Elliott Smith was an amazing musician, who unfortunately took his life on October 16,2003-I believe. Please feel free to check out these musicians at their own websites:
http://www.chrisgarneau.com
http://www.duncansheik.com
http://www.jennyowenyoungs.com

I will update when I know more information. All of these artists also are on myspace so you can always check them out there too.
The address for the Living Room:
54 LUDLOW STREET B/T STANTON AND RIVINGTON
TICKETS SOLD AT LIVINGROOMNY.COM

I have known Chris for so many years and he has been such an important person in my life. My first round of treatment and once again, he spends hours with me and doesn't mind just watching me sleep. He is an amazing musician and if you've never had the chance to see him live this is a great time to do it.

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This past week has been difficult but it is over and some really good things came from it. I am transferring my bone marrow tranplant from Robert Wood Johnson University to Hackensack Medical University. I went for a consultation on Thursday and I felt confident in Dr. Scott Rowley. I get to keeping seeing my normal "leukemia" doctor, Dr. Dale Schaar, at the Cancer Institute until I need to go in for the transplant. Hackensack is also great because it is closer for some people and the train ride there is not that bad. I saw the floor I would be on. I asked if I could see it. I just wanted to be a little familiar with where I would be. And I just stood there in the room, thinking "shit I have to be hooked up to all this stuff again". Being in the hospital for weeks at a time is such a strange thing. After a few weeks of low socialization, you begin to not want to leave. The first time I was able to leave when I was first diagnosed, and they took all the ivs out of me and I did not have to walk around with the pole, I started shaking. I was so terrified of what was out there. I was scared of not having my blood pressure and temperature taken every 2 hours. Now I can't imagine another 3-5 weeks in the hospital.

I think I am going to take a moment to explain what is going to happen to me because maybe some of you would like to know:
Right now, they will have to start the process of looking for a match for me. Patient and donors must have a similar "tissue type" in order for this transplant to be successful. Genetic markers on the surface of our cells define each person's tissue type. On the surface of most of our cells lie sets of proteins. Like a fingerprint, these proteins enable our immune system to distinguish between cells that belong in our body and cells that do not. If immune system cells encounter a cell with the wrong "fingerprint", they orchestrate an immune system attck to destroy it. At least five different proteins, called Human Leukocyte Antigens (HLA), on the surface of the white cells are believed to play an important role in stem cell transplantation. There are new high resolution DNA-based tests, called allele level typing, that can distinguish between hundreds of different genes that generate HLA proteins on the cell surface. While this allele typing is more precise, it is of course more time consuming and costly. So of course, this must be used since my brother and sister are not matches. So hopefully through this search, a donor will be found for me.
This search will take 8-12 weeks. I have already been knowing this for 8 weeks but due to the insurance complications with Robert Wood a true search has NEVER been under way. Oh but I must keep all my anger towards fighting this disease.
After a match is found, I usually have to do some preparation type exams. I need to get a dental exam, gynecological exam, some psychiatric help, and then within 30 days of the transplant I have to get the following exams: audiogram(hearing test), blood tests, bone marrow biopsy, bone scan, chest x-ray, cardiac (MUGA) scan, CAT Scan, EKG, echocardiogram, MRI, Pulmonary Function Test and of course a Urinalysis. I am admitted 7 days before the transfusion. The day of admissioin, I will go under general anesthesia and get a Hickman Catheter inserted into a major artery for chemo, iv, transfusions-I will also start chemotherapy at about 6pm. The first chemo I will get is called Busulfan. They will also give me medication to prevent seizures because this is one of the side effects of this chemo. I will have this chemo every 6 hours, 16 times. It will take 4 days. After those 4 amazing days of poison in my body, I will then take some cytoxan for 2 days. During that time, they will monitor my urine very carefully because it is some kind of side effect-blood in urine. During this time of the 6 days of chemo, I will also get rabbit serum-I hope I am spelling that correctly. Then after 6 days, I get one day of rest. The side effects of these chemo meds are of course, loss of hair, dizziness, nausea, possibilities of infections, etc. On the 8th day of my hospital stay I will get the transplant. -This is called Day 0. I start again. I can get the blood DNA of a male or female, it can change my blood type, those things do not matter. I am then put on medications and also after a certain amount of time, my counts will be so far down, I will need blood and platelet transfusions. After the transplant, we have to also watch for Graft versus Host Disease (GVHD). GVHD occurs in about 50% of patients receiving allogenic HLA-identical tranplants (that's what i am having). GVHD is an immunological process in which white cells contained in the donor marrow infusion recognize certain "target organs" in the recipient (host) such as the skin, liver, and inflammation of any or all of these tissues. The treatment of Acute GVHD may include high-dose of steroids or the use of an antibody directed against the cells that cause GVHD.

So far that is about my understanding. I know that might be a lot to digest but I feel sometimes people make up in their head the treatment or don't really know what specificallly I will be doing so I think this is the best way to explain it. I am a firm believer for me to be open and honest with what is going on in my medical journey and to allow as many people to listen to my doctor that are in the room.

So right now, I am at my apt. I will not need chemotherapy or to be hospitalized until the transplant unless something happens-where my counts go down very low or leukemia comes back full blown.