Archive | February, 2011

How Can You Help?

26 Feb

I’ve heard from so many of you wholeheartedly asking how you can help, and specifically if you can be tested to be my bone marrow donor.

The short answer is not exactly – not for me exclusively, at least. My brother Jack has a one in four chance of being a match and the odds are unlikely even for my parents. A cousin is basically as likely to be a match as a stranger, so the insurance company rightly limits the expensive tests that would only apply for my benefit.

BUT the good news is there’s a lot you can do, both for me and for the thousands of people who are facing life-threatening diseases today.

You can sign up to be a bone marrow donor through the national Be The Match Registry. It’s WAY easier than you think and trust me, it’s so very appreciated by those in need. You may have questions:

How do I register? Simply click “Join Now” at www.BeTheMatch.org. You must be age 18-60, in good health, and willing to donate to anyone in need. After registering online, they send you a kit in the mail and you simply mail back a cheek swab. (If you end up being someone’s match, you will be asked to get simple blood work later to test your HLA type)

Does it cost anything to register? No, but it would be great if you could donate to Be The Match. Each testing kit costs $100 for them to process, and they also provide wonderful patient services, education, advocacy and research.

Could I be Jenna’s donor? Potentially, but you could also have the opportunity to donate to someone with your specific HLA type (we’re talking crazy-specific molecular level here). I’m lucky because I’m of Northern European descent (think countries that produce redheads) and there are lot of us registered, but for those who are of African-American, Middle Eastern, Asian, etc. descent, finding a donor is especially difficult. If you aren’t a white girl like me, please especially consider donating.

If I’m a match, what is the donation process like? The donation process is surprisingly simple and painless. It’s done in one of two anti-climactic ways, described best by Be The Match.

Be The Match has a great list of FAQs for any other questions you have. Please consider joining or donating financially. Always one to take an opportunity to quote Shaq, (their spokesman) – here’s your chance to Do Something Big.

Until then, I’m ardently trying to get all of New Ulm registered. We’re almost all related anyway.

Thanks so much for your outpouring of messages, emails and comments of support. It means so much.

 

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And I’m Back…

24 Feb

Talk about interruptions. I certainly didn’t think I would be leaving Washington, DC in such a hurried, unplanned fashion.

Dr. Seibel, my oncologist in DC, had been watching my platelets steadily drop for a couple months. Last week they fell too far, prompting her to recommend I get a bone marrow test. My mom flew in to the land of monuments on Thursday to see the Friday procedure through. We had little reason to think anything major was wrong. I was bruising, but anyone who knows me knows my run-ins with walls, doors, and other obstacles are frequent, making bruises hard to attribute to anything other than plain clumsiness.

Later that afternoon, Dr. Seibel called saying the preliminary pathology results were showing I had something called myelodysplastic syndrome (MDS for easiness’ sake). I think I asked her to pronounce it about four times, then hastily jotted it down on paper as she spelled it. I had never heard of it. Apparently, it’s a blood disorder that causes my bone marrow to make dysfunctional blood cells that don’t mature into healthy cells. Eventually my red and white blood cells will fall too, in addition to my platelets. If it goes untreated, it often turns into acute myelogenous leukemia (AML), which is definitely not good. They have since confirmed that my MDS is a result of the chemotherapy and radiation I received for my successful osteosarcoma treatment when I was 17.

I went into work at Powell Tate later that afternoon, filed for medical leave and said goodbye to some of my already heavily missed coworkers. We rode the Metro back to my apartment and researched flights back to Minnesota. We packed extra heavy and flew home on Saturday. I told you things moved quickly!

My mom, dad and I met with my wonderful former oncologist Dr. Arndt at Mayo Clinic already this past Tuesday morning. She explained that if the diagnosis was confirmed to be MDS (which today it was), they would recommend a bone marrow transplant (BMT). I immediately thought back to my days working at the University of Minnesota’s Academic Health Center, where BMTs often made news for treating diseases that were supposed to be incurable. During a BMT, they first perform 8-14 days of intensive chemotherapy that basically kills my bone marrow cells and immune system to make room for donated healthy bone marrow. The transplant itself is apparently pretty anti-climactic – it’s a lot like a blood transfusion. After I’m healthy enough to leave the hospital, I’d have to live at the Gift of Life Transplant House near the Mayo Clinic for a few months. You can read more about BMT here.

“Do you have a brother or sister?” asked Dr. Arndt. This is important because I need a donor whose bone marrow exactly matches mine. Siblings are a match 1 in 4 times. Parents are a longer shot (Dr. Arndt has only seen two cases in 21 years), but they were tested anyway on Tuesday. I took my brother Jack to be tested today, urging him to think “match.” His respoonse:

“You know how I always make fun of you for not having an athletic bone in your body, hopefully I can give you a shot… my marrow is the shit.”

So, right now we’re waiting, hoping and praying that Jack is a match. We should find out by the end of next week. If he’s not a match, I need to go to the national Be The Match Registry, operated by the National Marrow Donor Program (think the Shaq PSAs). It takes three months on average to find a donor here, so that’s why we’re realistically but ardently hoping Jack’s marrow is as good as he says it is.

Until then, I’m living in New Ulm with my mom and Brad and am already slated to waitress the church sauerkraut dinner on Sunday. Thankfully Jimmy happens to be home from medical school in Chicago on spring break next week. Of course I signed him up to work the sauerkraut dinner too. I’m hoping he’ll wear his lederhosen for the ladies’ sake.

Thanks so much for all your support so far. It really helps.

Oh, and please stick with me on this blog. It’s my first, so I’m still figuring out the basics.

To leave a comment,just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you!