Friday, September 23, 2011

Stand and deliver.

There is a poem by Jane Kenyon that returns to me when things are going well. I've posted it before, but it warrants posting again:
Otherwise by Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

I've been fortunate thus far in my life to not know too much of the otherwise. There have been times, yes, but all in all, I consider myself very lucky to not know much of the kind of pain or suffering or despair or sadness that many people experience all the time. I'm loved, I'm happy, and I'm healthy. Sort of the good-stuff trifecta, you might say.

That last one - healthy - is something I work at. I eat  well, I exercise regularly, I don't overindulge in anything. But for all my efforts, there are things that come along in life that don't give a you-know-what if you're health-conscious or not. These are things I can't control, and I'm really good at not dwelling on things I can't control. What's the point, right? It's not that I'm not scared of these things, it's that I don't put energy in being scared of these things. I don't think about them. Stuff happens, and you deal with after effects. I am good at moving on and through to the after.

I'm loved, I'm happy and I'm healthy, and because of some cosmic craps-shoot that has me in the right place at the right time, I am (probably) going to be a bone marrow donor for an anonymous stranger.

In the spring of 2009, Frank told me that he heard about this organization called Be The Match, which is a bone-marrow donor registry. Be The Match would send each of us a kit that contained everything necessary to gather a DNA tissue sample and send it back to Be The Match for inclusion in the registry. Our kits came a few weeks after we requested them, containing a Q-Tip, a vial and some forms for us to fill out.

Collection of the DNA sample was as easy as could be - I  just rubbed the Q-Tip on the inside of my cheek, put the Q-Tip in the vial and mailed it back in the pre-paid-and-addressed envelope. A few weeks later, I got an email saying they received my sample and I was now included in the registry. Then I promptly forgot all about it.

Until Tuesday, August 16th, 2011.

On that day, I received a call on my cell phone from a woman who identified herself as Caree from Be The Match. She asked if I remembered joining the registry, (I did). She then told me that I was identified as a potential match for a 58-year old woman with non-Hodgkin's lymphoma, and asked if I was still interested in donating. I said I was, so Caree told me briefly about the types of donation, the method of transplant they want to use for this patient, and other information about the donation process. Caree said that this was very early in the process, so they needed to run another test on my cheek swab, and I needed to fill out a health questionnaire that they sent to me via email. The information all came at me very fast, and was too much to absorb at once. All I could really remember was a "58-year old woman with non-Hodgkin's lymphoma" needed a transplant, I was a potential match, and I had to wait to find out if I was the best match possible.

For the next couple of weeks, I spent a great deal of time researching the bone marrow donation process, learning all I could about the procedure, the experiences of the donors, etc. At the same time, I learned that at this point in the process, it was unlikely that I would be the best match - there are typically several potential candidates for donation. It was most likely that I would be cut from the field as closer matches were identified.

But on Thursday, September 1st, I got another call from Caree. This time she told me I was a strong match for the patient, but they needed a blood sample to be sure. She asked that I give a sample the following Tuesday, and set up an appointment at a local lab for early Tuesday morning. She emailed me a consent form that I had to fill out and fax back to her, and asked that I take their health assessment survey again to make sure nothing had changed. I asked Caree what was the likelihood of me being the best possible match after the blood tests, and she told me that it was about 50/50.

I was no longer dealing with exclusively with forms and Q-Tips. We were about talking needles and blood and things started to get a little more real than before.

I should pause at this point in my story to tell you that I haven't had good experiences with blood draws. Typically, the technician has to stab me multiple times in multiple places before barely a vial of blood emerges from my sad little veins. I've never donated blood for this reason. Even checking my cholesterol using the finger-prick method is a painful, time-wasting chore. So I was not excited about the thought of getting several vials of blood drawn at all. But the last time I had to give a blood sample, the technician told me that drinking lots of water before the draw helps make the draw easier. I would take this advice to heart (and veins).

I drank about a gallon of water the day before my appointment with the lab. When I got to the lab, I told them I was a potential bone marrow donor and they were ready for my arrival. They had a box from Be The Match there with vials for my blood samples and forms for the lab to process. While waiting for my turn with the technician,

You know what? It totally worked! I spent about 5 minutes with the technician, who managed in that time to draw 5 vials of blood from me with one try. It was incredible. I've never had that sort of experience before. Not even a tiny bruise.

The next day, I got an email from Caree who told me we were in the "hurry up and wait" phase of the process. It usually takes about a month from the time of the blood draw until the right donor is identified, and Caree told me I could contact her for updates around that time if they hadn't contacted me yet.

I didn't have to wait that long.

On Wednesday, September 21st I received a call from Paulette, who works with Be The Match out of Omaha. Paulette told me that I was the best possible match for the patient, and that the doctor wants to move rather fast on this one.

I'll go into more details in future posts, but the short version of a long story is that there are two types of bone marrow donation and the type they need me to do can't be done in Kansas City. I have to travel to one of a few cities, and because we fell in love with the mountains in August, we chose to go to Denver.

I'll know more on Monday when I have an informational call with Paulette to go over all the details, but I will have to go to Denver once for a physical and once for my donation. Be The Match will cover all travel expenses for me and a companion, so we don't have to worry about any of that.

It's going to be an interesting October. All I get to know about the patient is age, gender and disease. 58-year old woman with non-Hodgkin's lymphoma. She's the same age as my mom. There are no choices to be made. I have no doubt about what I am going to do, because my mom taught me to do the right thing.

Because this process has sort of been an emotional roller coaster, I want to write about it and share it with all of you. I'll give more details about the donation process and share some facts about donation that surprised me and I know will surprise you, too. I'll be as honest as possible, and if it hurts, I'll say so.

I hope you'll follow my story as it unfolds, and that maybe it will inspire you to join the Be The Match registry, too.

Here we go... I get to affect someone's otherwise.


  1. I have followed your blog for years. You are doing an awesome thing. Good luck!

  2. Thank you, Meesha. I've followed yours for just as long :)

  3. Who pays for the trip to Denver? Is there an age limit for donating bone marrow? I'm 67, and nobody is interested in most of the parts of my body.

  4. Wow... what an opportunity.

    I'm also curious about the expense side.

    Regardless, I'm ordering kits for both of us today!

    Thank you so much for sharing your experience with this. It is incredibly motivational.

  5. The National Marrow Donation Program (NMDP) pays all travel expenses for me and a companion, including air, hotel, taxis, meals - even dog boarding.