Be the Match

I have successfully completed my last chemo session! It ended up being one of the rougher sessions, but I’m definitely on the upswing now and am very happy that this phase of treatment is over. I’m looking forward to becoming more active over the next few weeks. I’m very fortunate that I’ll be able to return to almost all the activities that I did before (and hopefully more). There is one thing I won’t be able to do anymore though: donate blood.

I doubt many people know this, but I’ve been a regular blood donor since college. One of the first signs that something was wrong with me was when my blood donation in February was rejected due to anemia. It’s not highly unusual for women to be anemic, so while I thought it was strange, I didn’t think much of it at the time. That ended up being the first sign that something was off with my body. A couple months later, my friend Britni had posted that she had been selected as a bone marrow match after seven years of being in the bone marrow registry. She unfortunately was unable to donate since she was pregnant with twins, but she posted on her Facebook page registration instructions at Marrow.org, hoping she would inspire others to join the registry as well. It worked, because that night I requested a kit. Since my husband is in the military, I’m a Department of Defense dependent and I requested my kit through a special program at DODmarrow.org. Ironically, the day after my kit arrived, I went to the ER for chest pains, which eventually led to my cancer diagnosis. When I got the reminder email that I was due for my next blood donation a few weeks later from the Blood and Tissue Center of Central Texas, I let them know I had been diagnosed with lymphoma and was notified that I’ll be ineligible to donate blood or tissue indefinitely. However, like Britni, I’m hoping others will learn about blood and bone marrow donation through me and be inspired to donate as well.

Despite (or maybe because of) my history as a blood donor, I never thought of myself as someone who might actually need a blood or tissue donation. That is, until a few weeks after my diagnosis when I ran across a story about a Scottish rugby player named Chris Mallett. I have no idea what I Googled, or how it came up in my search, but I clicked on it as soon as I saw it because he shared a name with a friend of mine from college. Chris was diagnosed with Hodgkin’s when he was 20 and had been fighting it off and on for three years. At the end of the interview, he said he was in remission and hoped to return to rugby. I wondered what he was doing now and if he had done any charitable work related to Hodgkin’s. I even entertained the idea of trying to connect with him on Facebook if I could find his page. Unfortunately, I found out Chris was one of the ones that didn’t make it. I was shocked and even cried for this young man I never knew. I had actually never heard of anyone dying from Hodgkin’s before that. As a Hodgkin’s fighter, you comfort yourself knowing that survival rates are more than 90 percent if caught early, and still pretty high even in higher stages. It was easy to forget about the people in that remaining 10 percent. The ones that don’t make it.

Although I wasn’t able to find a ton of information on Chris’s exact situation, part of the reason he didn’t survive is because he needed a bone marrow transplant. Chris was of mixed-raced descent, which makes the chances of finding a bone marrow match even lower than normal. I believe he eventually found a match, but since his disease was so advanced he ultimately lost his six-year battle with Hodgkin’s in 2006 at age 26. From the information I could find, it was obvious that Chris inspired his community and many people became joined the bone marrow registry because of his story.

I know I can sit here on my soap box preaching about how everyone should donate blood and join the bone marrow registry, but you’re probably thinking, “Geez, it’s easy for her to say since she’s ineligible… but I read about her bone marrow biopsy and that s*** hurt!” You are totally correct. I made no secret that my bone marrow biopsy was somewhat traumatic for me, but every situation in unique and my experience is not going to be the same as every cancer patient’s experience, and what a donor goes through is not going to be the same as what I went through either.

To give you another perspective, a friend of mine from college, Amber, was kind enough to write about her experience for this blog post:

I try to donate blood fairly regularly. The needle doesn’t bother me at all, and I feel like it’s really quick and easy community service. It’s so easy for me (and everyone), but it’s impact is immeasurable. A few years ago, I was at a blood drive in a local mall when I was asked to join the Bone Marrow Donor Registry. All they needed to do was swab my cheek to collect a cell sample. How can you say no to that?

I always wanted to be called because I wanted to save a life. Sometimes we want to do something for others and make some lasting impact, and I just felt this was a good way to do it. Again, sounds easy so how can you say no?  Too bad the chances of finding a match are very slim. On average, one in every 540 of the members in the Be The Match Registry in the U.S. will go on to donate. This is not annually; this is over the entire time they are in the registry. This number is very small considering the number of people needing transplants, and the fact that the Be The Match to Registry and other registries worldwide allow access to nearly 16.5 million possible donors.

Miraculously, in March of 2012, five years later, I received a phone call out on the softball field while taking team pictures informing me that I was a top five candidate match. I know people who have been in the registry for 15 years and never even been called as a possible match. At this point the possible processes of donation were described to me.

Bone Marrow:  The process most people are familiar with involves a large hollow needle being inserted into the hip area of the donor into the femur to extract the bone marrow.

Donation of Peripheral Blood Stem Cells:  This process is currently not FDA approved and in trials. It seems to be less invasive for both parties and produces better success, but as I said, it is still in trials. I am now part of this trial.  The donor receives injections of a drug called Filgrastim that makes the marrow of the donor produces more cells.  This is a drug that is FDA approved and used in treating cancer patients themselves. On the fifth day of injections, the donation is made through a process called aphaeresis. The blood is taken from one arm, put through a machine to take out the extra stem cells to be donated, and returned to the donor through the opposite arm.

In order to determine if I was the best match, I had to go to a blood donation center about fifteen minutes from my house to have blood drawn for testing. Two weeks later I received a phone call telling me that I was THE match for the candidate. I was given very few details (gender, age, and cancer type) of the patient to whom I would be donating.  I was also informed that I would not be able to meet the patient for at least a year and only if the patient wants to.

I then had to travel to Houston (about 2 hours from my home) for more blood testing and a physical. Once I was cleared, dates were set for the donation. For the first injections, I again had to drive to Houston, but the second, third, and fourth, a woman came to my home to give me the injections. For five days I received these injections, and on the fifth day my cells were harvested. Because my marrow was working harder, my bones and major joints were in a lot of pain. Also, the day of the donation was difficult because I had to spend over six hours in the same position.

Some people may be scared off by the amount of blood given for testing, the bone discomfort, and the donation itself… but the mild discomfort and inconveniences are nothing when you consider what someone suffering from cancer and their family goes through. What I went through is nothing, a paper cut, a stubbed toe, a sniffle, in comparison. To me it seems like a no-brainer to join the registry and sacrifice some blood and a couple of days of time to SAVE A LIFE and give someone back their mother or father, spouse, child, or best friend.  Also, you are compensated meals, expenses, mileage, hotel stays, missed work, etc. as necessary.  Again, HOW CAN YOU SAY NO?

As it has not yet been a year, I have not met my recipient. I do know however, that somewhere, my immune system is giving someone else a chance at life, and that thought makes me feel amazing. I am so glad I was given this opportunity, and I hope that I can help other people learn more about becoming part of the Bone Marrow Donor Registry and inspire them to join and SAVE A LIFE.

 

Amber while bravely donating her marrow.

Go to http://www.bethematch.org to learn more.

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5 thoughts on “Be the Match

  1. It’s interesting you decided to write about the Bone Marrow Donor Registry because one of the reporters in NOLA has been talking about it a lot. Robin Roberts (from Good Morning America) battled breast cancer years ago and while she beat it now she’s in need of a marrow transplant for a blood disorder that can occur after cancer treatment. Her sister, Sally-Ann Roberts works in NOLA and they’ve been educating people and setting up places for people to get tested. Robin and Sally-Ann were super lucky considering they were 100% match, but that is not always the case, especially with people from other racial backgrounds.

    Curiosity got the best of me so of course I went on the website to see their eligibility guidelines. Unfortunately I don’t qualify since I was diagnosed with MS with attacks areas within my body. Maybe once they have more answers with autoimmune diseases more and more people could join the registry. But, I think it’s good to have guidelines, you don’t want a blood marrow transplant and then come out a few months to a year later with another disease.

    • Thanks so much for sharing! As often as people have discussed Robin Roberts’ story with me, I had no idea she was from the Mississippi Gulf Coast or went to Southeastern in Hammond, or that her sister worked in New Orleans! What an amazing role model for all of us, not just cancer patients! I’ll have to follow their story more closely and will pray for a positive outcome!

  2. I actually registered a couple of weeks ago and got my swabs in the mail the other day. Like you, I’ve been a blood donor since I was 17, so I was excited to do something more to help out. I don’t know if I’ll ever be matched, but I’m ready for it if it happens! So glad you’re done with chemo!

  3. Pingback: PT Scans and Mission Moments | the lymphoma letters

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