My veins are…not cool.

The National Bone Marrow Donor program representative sent me to the Karmanos Cancer Center in Detroit instead of UM in Ann Arbor. This is because if your veins are not deemed large enough in your arms, the donation procedure must be done via a central catheter in your chest. Apparently, UM will not do this (what the heck, UM?)…but Karmanos will.

Apparently I have “awful veins”. As soon as the nurse, kindly enough, uttered those words, I felt inadequate. Isn’t is funny the things we want to apologize for?  “I am sorry that my veins are awful… I am just not cool.” Yes, that is what was going through my mind. Geez, Rachel, give yourself a break.

Anyhoo, the veins in my arms are indeed not big or cool enough to accomodate the donation procedure, so I will need to  have the chest catheter. The Coordinator at Karmanos explained that there are pros to this: the procedure will be quicker this way and my arms/hands will be free. Which is good news, because those of you who know me best know my weakness: I am claustrophobic. And being without the use of my arms might trigger that panic. But shhhh….don’t tell Karmanos….so far they think I am normal…

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My daughter…a vampire?

I mentioned to my daughter, Elizabeth, that a nurse was going to come to the house tomorrow before work to draw my blood for more blood tests (when will they believe I am STD and fetus-free?).  I casually asked her if she wanted to watch the blood draw and she was so excited that it rivaled her reaction at her Christmas gifts. Why she is super-excited to see the blood spurt out of my arm into containers is beyond me….unless, of course, she is a vampire masquerading as a savvy 4th-grader. Let’s examine the facts, shall we?

a) She is excited by blood

b) She is strikingly beautiful (in my opinion, of course).

c) She gets by on little sleep and most people her age would be dead from lack of it.

All kidding aside (not that I was), I am glad that the kids get to participate in and oversee this process with me. Perhaps now, they will not grow up fearing needles, medical procedures and will know that their bodies are strong and can withstand many things–including things that cause pain.

Excitement with a side of dissappointment

Vicki from the NMDP called on Monday, February 27 to go over consent for the donation and logistics…and there are many. I was on the phone with her for an hour and a half, indicating that I did indeed understand what the program was asking of me (lawyers! No consent is pity anymore. You cannot just consent to something…you have to consent to consent!).

Vicki shared what she is able to with my about the patient–and that is very little. The patient is a 51-year-old male who lives in Italy. He has a disease called Myelofibrosis, which disrupts the body’s normal production of blood cells. Apparently, my HLA markers indiate that I am an even better match for him than even his family is. It is a bit heady to think of someone as your own biological doppelaganger out there in the world. Every word that Vicki utters–even the side-effects of the injections of filgrastim, the potential for the body to be achy after donation–excites me all the more. I want to do this! As for the bit of pain, I say bring it on– I see it as a battle scar, one worth wearing if it gives someone else another chance at life.

Vicki warned me that once I give consent and the Dr. has cleared me after my physical, the patient will be put on a high chemotherapy regimine for two weeks before the donation. This will get rid of his immune system, in the hopes of lessening the chance that his body will atack the new blood cells given to him by me. She also explained that although I can say “no” to donating at any point, I must understand that if I say no after the patient has received the chemo, he will die. Wow, in some ways, after that point, his life is somewhat in my hands. This is a very crazy thing to think about.

Vicki then told me that because Italy is more strident in their privacy laws, the patient and I will never be able to communicate directly. Ok, Italy, if both the patient and I consent to knowing whom each other are, why do you care? I have to say that this news is a bit disappointing. On the one hand, you are being told that you are this patient’s only chance for a cure, his only chance to live. And then you are told you can never know who he is.

I am not sure about you, but this seems anti-climatic. In some ways, you are a miracle for this person, but then you are told you can never know how he is doing, what he looks like, what his family might be like. I have to admit that this a kind of rough. I did not have grandeur illusions that I would be wicked off to Italy to meet the recipient (ok, maybe I did), but I was hoping that we could exchange an email or two.

Sharing with kids…some highlights

I picked my oldest child, Regan, up from dance on Wednesday, the 22nd–the day I was confirmed to be a good match. I barely waited for her to have the door shut before I blurted out “guess what…I am a match for that guy!” Seeing Regan’s blank face, I realized I had to back track and explain again what I had been tested for. I told her that someone had an awful disease–such as cancer. She asked “isn’t that what Grampa Barsch died of?” I told her that it was, and that he had died of pancreatic cancer–a particularly virulent form of cancer. She replied “weird…we are watching the “Last Lecture” in school, and the Randy guy (Randy Pausch) died of that, too.”

I was excited that her school showed the “Last lecture” and encourage anyone who has not seen it, to check out the video at: http://www.youtube.com/watch?v=ji5_MqicxSo

Elizabeth, Audrey and Spence are not quite sure what is happening, only that the blood sounds “gross”. Well, duh.

I am match…hear me roar!

My professor from my Fundraising and Grant Writing class, taken in the winter of 2009,  told our class that those who donate their time and/or money often have higher levels of Oxytocin–sometimes dubbed the “Love Hormone”–in their system. I have to admit that, upon hearing the news, I felt particularly good, and perhaps my prof was right–doing something good for someone else does release a biological “feel good” reaction.

There has been varied reactions from my friends and co-workers to the news. My husband–ever the cool cucumber–told me that he is excited if I am excited. My friend Mary, commiserated on what kind of person the patient might be Linda, upon hearing the news that the paient is a male who lives in Italy said, “well, you know, I heard that the Pope is ill.” Which, of c ourse, had us giggling. Pete offered his congratulations, but I could tell from his face that he was thinking “God help us all if the recipient takes on her personality traits.” One of my closest colleagues indicated that he is jealous; he has been on the registry for years with nary a call. Erica and I laughed and said that we would have to warn Italy that my Peripheral blood stems cells are on their way and that the country would never be the same.

I am feeling pretty darn good about this opportunity and keep playing that Flo Rida song “Feeling Good” to match my mood.

And it’s…a match!

I got the confirmatory call on Wednesday, February 22nd. I had a premonition when I saw the red light on my phone, indicating a voice mail. My suspicions were confirmed when I heard “this is Vicki from the Be the Match Bone Marrow Registry…” I tried to listen to the message in its entirety but as soon as Vicki uttered “…find you to be a very good match….” all hope of that was lost.

Vicki told me that the patient’s doctor had determined that I am a good match, and that they wanted me to proceed in the process. Vicki then outlined all that was involved: I would be receiving a packet of information; I would need to submit to more blood testing (good grief!); I would need to drive to a cancer center in Detroit for a physical. I would need to give more blood samples–apparently they want to check and double check and triple check that I am not pregnant. Five days prior to the donation, I would need to receive injections of filgrastim, and then for each day including the day I donate.

While Vicki is explaining all of the logistics on the phone, my mind is racing. I am elated that I am a match! I want to tell everyone I know!

Waiting and waiting

Waiting to find out if I am an actual match is trying my patience!  I distract myself by wondering about the patient: where they might live, their gender, occupation and their family. Does the patient have traits like me? Do we resmemble each other in any way? I also wrestle with the fact that I may not turn out to be a match. At this point, that would be a big blow. I am already invested in this thing and I am excited to go through with it.

Saving a life…not just for superheroes!

I got the first call on January 24th. An email notification with a transcribed voicemail told me that I am a  potential match for someone needing a bone marrow transplant. I had just returned from back-to-back-to-back meetings and had to rush out the door to my Administrative Law class, but I was so excited by the prosepct of being a potential match, that despite the late hour, I called the Bne Marrow Registry back right away.

I was told that I am a potential match and was asked to donate blood so that it could be matched at the DNA level. On Monday, January 30, I drove to Livonia and gave a blood sample. I was told that testing could take up to 90 days. I was thinking “hold up…is this person not dying and in need of a transplant, like, ASAP?” I settled in to wait, reminding myself that the wait for the patient is much worse than mine…

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