Be The Match: The National Marrow Donor Program

While I'm busy beating the AML beast back into remission, a national search is going on to find a donor that will be a match for me. My sister is being tested, but there's only a 1 in 4 chance that she'll be a match. If no one is found in the US, the search will go abroad. The National Marrow Donor Program (NMDP) or Be the Match, is the official registry for both stem cells and bone marrow searches and donations. I've had a crash course in transplants in the past few days, so I'll try to summarize what I've learned.

Several people have asked me how they can be tested so that the results can be directed to my transplant team. The first step is to check out the medical guidelines that list certain requirements for becoming a donor. Once these guidelines are met, there are two ways to be tested: Private Testing and registering with the Be The Match Registry.

Private Testing
Transplant matching is most successful if the donor and the patient is the same race and ethnicity. The NMDP is searching for donors for me that are Swedish, English or a combination of both, like me. If people are not in these categories, it would probably be a waste of time and money (it costs $150) to be tested privately. If people are in these categories, and want to be tested specifically for me, they can contact Lab Corp at 800-533-1037, where a Friends and Family account has been set up in my name. Potential donors would need to give their name, address, phone number, my name, and ask for HLA, A, B and DR screening (these are regions of genetic markers).

Lab Corps would send out a mouth swab kit, a requisition for the testing and federal express supplies to ship it all back. Once the testing is complete, they will fax the results to my transplant Case Manager and mail a copy to the person tested. The results will not tell the potential donor if they are a match or not. Someone from my transplant center will need to review the results and notify anyone who might be found to be a match. The testing takes between 7 - 10 days. When someone tests privately for someone else, they are not registered in the the Be The Match Registry for possible matching to someone else.

Be The Match Registry
According to the FAQs about joining the registry:

When you join the Be The Match Registry, you make a commitment to consider donating to any searching patient who matches you. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our registry.

You can request a copy of your own testing results after you join the Be The Match Registry. However, if you want to be tested only for a specific patient, you will need to have your testing done privately.

When I called the Registry, I was told that 75% of the time donors are matched with patients who need stem cells (from blood) and 25% of the time donors are matched with patients who need bone marrow. A bone marrow donation requires surgery, so it's important to review the website thoroughly before registering. The testing process is the same as with private testing. Once someone joins online, a test kit is sent, which can be sent back free of charge. The Registry will ask for a donation to cover expenses and administrative costs. When a copy of the results come back to the donor, that person can fax them to the Case Manager on my transplant team and she will review the results to see if they are a match for me. My Case Manager is Christina DaCosta and her contact information is 201-996-5877 tel, 201-996-5691 fax.

According to my doctor, Scott Rowley, who is the Director of the Transplant Program at Hackensack, there are 19 million people who are giving, brave and altruistic enough to register for this international program. I find that incredible and amazing. Yes, once the mouth swab test is submitted, it's pretty unlikely that any one person is going to be a match for someone, but still. It's nice to think about 19 million people volunteering for something that could save lives, especially when the world is so full of bad news.

In the meantime, I'm riding the wave of side effects from the chemo. Just when I start feeling better, I'm due for another purple, yes purple, bag of chemo cocktails. By mid next week I should feel better and hopefully be through with treatment. Then my counts will drop, just like before, and I'll cross my fingers that I won't get any infections.

On the bright side, maybe I'll get to see the leaves turn after all. From my 8th floor room in Hotel Hackensack, my window looks out over trees and the western towns of Bergen County. If there are clouds in the late afternoon, I can even catch a sunset. Things are not so bad.

Kathy

CANcer + HEALth = CAN HEAL

Nurse BP

My first night at Hotel Hackensack was memorable to say the least. I didn't "check in" till almost 6:30, after a very long consult with the transplant team, hospital admission procedures, and waiting for my recently vacated room to be cleaned. By the time I ate dinner and unpacked, I was pretty beat. I took an Ambien to help me sleep (I've been a little stressed out lately), and by 9:30 I was barely able to stand up.

The night nurse came in at about 10:00 to do a full assessment of my medical history. As I remember it, there had to have been hundreds of questions. I nodded off at least 5 times and the nurse -- I'll call her Nurse BP for reasons that will soon become clear -- kept nudging me awake. No, I don't have a pacemaker. No, I don't have removable teeth. No, no one is beating me at home....

Finally, the assessment was over, and I could sleep. Then she took my blood pressure. It was 80 something over 50 something. This was very disturbing to Nurse BP. She took my blood pressure 3 more times. Same results. She just kept staring at the machine. She sat me up and took it again. No change. By this time, I felt like a wet noodle. "It's because of the Ambien. And my blood pressure always runs low. It's no big deal," I tried to explain. Then she wanted me to stand for a minute, have another reading, lie down, have another reading, stand again, and so on. No freakin way. "Tomorrow!" I begged. She finally left at 11:15.

At 3:30 a lab technician barged in and threw on the overhead lights so that he could draw my blood. I thought I'd been dropped in a baseball stadium. That would have been the time to take my blood pressure. Instead, just when I had fallen to sleep again, the nurse's assistant came in at 4:30 for, you guessed it, more blood pressure readings.

With the exception of a rather frustrating night, things are going well. I'm in a very nice room, on a newer, pretty fancy floor with "In Room Dining" service, complete with delivery staff dressed like restaurant servers. I had all my tests and pre-chemo procedures today, and I will start treatment tomorrow. The side effects and toxicity levels remain to be seen, but I've been through it before. I can take it.

I have a new appreciation for Greenday's song, Wake Me Up When September Ends. Unfortunately, no amount of Ambien will allow for such a luxury at Hotel Hackensack.

Kathy

CANcer + HEALth = CAN HEAL

Another Lost Fall

I love the seasons on the East Coast. Just when Summer bakes us a little too long, a crisp wind teases us with the promise of brilliant colors everywhere. Fall is my favorite season. But it's a bittersweet season for me. Whenever I get bad health news, it's always in the Fall. Unfortunately, this year is no exception.

I went for a bone marrow biopsy the day after I returned from my trip to Arizona. I found out late last week that the test did not deliver good results. I am no longer in remission. Dr. Forte sent me for a consult with Dr. Stuart Goldberg, Chief of the Leukemia Division of the John Theurer Cancer Center at Hackensack University Medical Center -- the number two rated blood treatment and transplant center in the country. I met with him yesterday, and learned that I will need more chemotherapy to get back into remission before proceeding with a transplant.

Chemotherapy regimens for relapsed Acute Myeloid Leukemia (AML) are complicated. The transplant process is completely mind boggling. By the end of the consultation, my brain hurt. The plan is for me to meet with the transplant doctors next Tuesday, after which I will be admitted to the hospital to begin the chemo treatments. I'll be in the hospital for about a month, and then recover at home until a match is found for the transplant. The transplant process, once I'm in remission again, could take 4-6 months.

This has been a rough week, to say the least. I still can't believe this is happening, after everything I've battled so far. It's like a final surge that one hopes will end the war. I hate to think about going back into battle so soon. And I'm devastated that I'll be on medical leave from work for so long again. Physically, I feel fine, although I know my blood counts are dropping. It's only a matter of time before I would end up in the ER. The foreshadowing of my previous post, The Suitcase, is downright creepy.

Although this will be my biggest fight yet, I've overcome worse obstacles. Fighting cancer has become my thing, my talent. I can't sing, cook or play sports, but I sure can fight cancer! I'd like to fight it in a public service kind of way, not as a patient anymore.

I've said it before, and I'll say it again: Hug your kids, kiss your parents, goose your spouse and give your pets a big squeeze. If you've always wanted to go somewhere, go. If you've always wanted to do something, do it. Life is too short and it could change drastically in an instant.

If I'm lucky, I might get to see some Fall colors from my isolation room in Hackensack. But if I don't, there's always next year.

Kathy

CANcer + HEALth = CAN HEAL