Thursday, July 29, 2010

SWHAW Gets a Facelift

You may have noticed that She Who Has a Why just got some pretty fancy renovations. Big thanks to my talented blogging/tech savvy friends Kate and Emily for their help. In addition to aesthetic changes, I have also added a feature that some of you have asked about in the past: you can now receive email updates each time that I put up a new post, containing the text of that post. All you have to do is enter your email in the box at the top right corner of the blog, then click through on the verification email that you receive shortly after.
Communicating this experience - the details, the plans, the decisions, the pain and the lessons learned - is sometimes hard for me. But it's part of my healing process as much as it's also a means of updating my friends and family, and serving as a resource for folks facing similar challenges.
Thank you all for following along.

Friday, July 23, 2010

The Experience of Becoming A Bone Marrow Donor

I like to think that I surround myself with do-gooder types, but even I was surprised by the fact that I have two friends, Jason and Rebecca, who got their calls from the Gift of Life and became bone marrow donors in the past few years. Their stories are beautifully told in their own voices below and provide all of us with a tool for those who need an answer to the question, "what does it mean to become a bone marrow donor?" Many thanks to Jason and Rebecca for sharing with us.

Jason's Story:
The prospect of donating bone marrow can be a little nerve wracking, but, speaking has someone who a) has given b) has a very low pain-threshold and c) is absolutely terrified of needles, I can tell you need not worry. Swabbing your cheek is a very easy step (that you all should absolutely take!) that is the first step in the process. To find a match, all they need is a little DNA and a few cells from your cheeks will do the trick. When you go to a drive, you'll fill out a quick and easy form, take a glorified Q-Tip and swab the inside of your cheek. Then, bing bang boom, you're in the registry.

But, by this point you know that already, so I want to give you an idea of what the rest of the process is like. Should you be a potential match, you will get a phone call from Gift of Life. They talk with you about the process, about the tests you will take, and to answer any questions you might have. They even assign you a specific person to work with throughout the process. In the first round, they contact a large number of potential matches, casting a wide net, hoping that they will be able to find as close to a perfect match as possible. To do that, they take a few tubes of blood and run their hematology magic on it.

Then, a couple of weeks or a few months later, if you are the match you get the next call. At this point, you learn about the donation process. There are more tests to run, including a physical, an EKG, x-rays, and some more blood tests.Now is when we get to the good stuff. There are two methods for donating. The process they will use depends on what the recipients doctor deems would be the best way to receive and use the donation. Before receiving the donation, the recipient undergoes aggressive chemotherapy. The recipient’s immune system is totally wiped out so the marrow you donate will replace that clean slate. Clearly, timing here is important, but Gift of Life was able to work with my final exam schedule and my location, to arrange the procedure.

Now on to the two options. The first, as I understood it, works this way: once a day for 4 days before you donate, you get injected with a growth factor causing you to create more white blood cells which, on the day of the donation, they will extract. Essentially, they hook you up to a machine that filters all of your blood and takes out the extra white blood cells. Those white blood cells will be given to the recipient to reboot their immune system.

The other option, which they used in my case, is straight-up bone marrow extraction. I was given general anesthesia and went to the OR. In order to get the marrow out they essentially stuck a big ol’ needle into my lower back and took the marrow right out of the bones. I spent a few hours in recovery and they sent me on my way with some strong painkillers.

The question everyone asked was “how bad did it hurt?!” And, frankly, it wasn’t that bad. The day I donated, I flew home (I was a senior in college and was going home for winter break). More than anything over the next few weeks I was sore. There wasn’t a great deal of pain (I switched over to extra strength Tylenol pretty quickly), but moving from standing to sitting or sitting to lying down took some effort. I recovered well and two weeks later took a 3-hour car trip and sleep on the floor at a friend’s house for New Years. I was told to avoid contact sports for a month, but other than that, I didn’t have any other significant restrictions.There are, of course, more details about the before, during, and after that I am happy to share (either in comments, or you can email me).

If you haven’t yet joined the National Bone Marrow Registry, I strongly urge you to do so. Being lucky enough to be selected as a donor was far and away the most meaningful and important thing I have ever done, and, God willing, you will be fortunate enough to have that experience as well. - Jason Fenster

Rebecca's Story:
There’s a little girl somewhere in this world who is cancer-free and alive because when someone asked if I wanted to join the bone marrow registry, I said “yes.”

Thinking about signing up for the registry? Do it! Swab your check, and if you’re blessed enough to be a match at some unexpected point down the road, jump in and give that little piece of yourself without worry. Because the physical process is far less of an “ordeal” than you’d expect and the rewards – both potential and guaranteed – are greater that you could ever imagine.

I loved donating. It was one of the most important events in my life and high among the things I’m most proud of. It was exciting and humbling and BIG– and it didn’t hurt a bit! Truly! The worst part was having blood drawn for the tests to confirm I was a match, and even that was mostly because I had to contend with Midtown traffic to get to the lab. Over a year later, I still become energized just talking about it. With so little inconvenience to myself, I saved someone's life. I'm still awed and grateful that I can say those words.So sign up! It's so little to give and so very much to gain. - Rebecca Chaikin

And now is the perfect time to swab because Good Morning America is temporarily covering the cost of new registrants in an effort to find a match for a little girl who plays young Nala in the Lion King on broadway. Let me be the third voice in this post to say: get swabbed!

Sunday, July 18, 2010

9 Weeks

It's been about 9 weeks since my last blog post. Here's some of what has happened in my life during that time. First, I finished cycles 3 and 4 of GVD chemotherapy, and had scans that confirmed that the chemo has continued to work and I remain in remission. Though the toxic chemicals are still making their way out of my system, I've been able to have a pretty normal and awesome summer, and I have tried to treasure every day. I have enjoyed being able to give my all at work, have some fun adventures, and spend quality time with my friends and family without feeling too distracted by germ-anxiety or feeling sick.

And while I don't know all that you have been up to in the last 9 weeks, I do know this: in dozens and dozens of drives across the country and world, you all have put thousands of individuals into the bone marrow registry. Going by the statistics, you, my family and friends, have registered matches. Going by the statistics, you have saved lives. Thank you all for your creative, passionate, and extraordinary efforts to grow the bone marrow registry. You have mobilized in inspiring ways and I am proud of and grateful for my world-wide network of committed doers.

This brings me to some wonderful news - the other exciting thing that has happened in these 9 weeks, is that I received a call that I have a 9/10 match -- a 23 year old woman who is registered in the Israeli bone marrow registry. This match is very promising, and was news that allowed me and my family to take a breath that we'd been holding for months. While this is no doubt fantastic, the search continues for other 9/10 and 10/10 matches (based on 10 specific points of DNA). Please continue your efforts to register more individuals and participate in upcoming drives. A list of upcoming drives through Be The Match and Gift of Life can be found here and here respectively -- note that all swabs go into the same system, so you can attend or volunteer at any drive and know that it will make a difference. There's one coming up on August 5 at the DCJCC (contact grossman.allison@gmail or if you're available to volunteer!)

Many of you have faced many questions about what becoming a donor involves and whether it is a painful and difficult process. As promised, two of my friends who have gotten that call and donated to people in need, will share their stories in an upcoming post.

Now that a potential donor has been identified, I will be determining the next steps in my treatment process in the coming weeks. I will share those decisions here with all of you.