A number of years ago Andrea and I loaded up into the car with our new baby Rebekah, and drove to Bonneville High School where the
National Marrow Donor Program
(NMDP) was having a marrow registry drive. We joined the national
registry, contributing our cheek swaps and recording our e-mail addresses,
then went home.
Over the following years I didn't
think much of it. Maybe once a year they'd send an e-mail for me to
verify my address or some such, but it wasn't really on my radar.
That
all changed December 27, 2012, when I was contacted via e-mail and
informed that I'd "been identified as a possible marrow match for a
35-year-old male in need of a transplant. The patient’s doctor is trying
to determine treatment options as quickly as possible." The e-mail
included a phone number I should call if I was still willing to do it. I
talked it over with Andrea, who agreed: "Yes, of course you
have to do it!" I called the number right away, told them I was absolutely interested in being the donor, and thus began a months-long process that culminated in my donating last week.
The
first step was further compatibly testing via a blood draw. I went to
the local hospital and had 10 or so vials of blood taken which were
mailed off to Somewhere and compared to the patient's blood to see if I
was more than just a "possible" marrow match. They said this could take a
while, and it did: I didn't hear back from the NMDP until the beginning
of March.
One day in early March I received a phone
call from the my NMDP representative. She told me I had been identified
as a very good match for the patient, and asked if I was still willing
to do it. I was. What followed was a lot of education and paperwork: I
was mailed a fat packet of information to read, waivers and consent
forms to sign, and forms to mail back. I would be doing what's called
peripheral blood stem cell donation, or PBSC, which is actually more common nowadays than the bone marrow donation
you've probably heard about where they stick the big needle into your
hip, although it yields the same stuff.
They wanted me to do it the last week of March, but we had our big
DC trip to visit Rachel and her family scheduled that week, so it was decided I'd be flying out the day after we got home from DC. I say "flying out" because apparently Idaho doesn't have an apheresis center where they can do this sort of thing, or so I was told. My rep asked me where I wanted to go, and I said "I don't care" so the next day she excitedly told me I'd be traveling to sunny California (my
50th favorite state!) to the
Stanford Cancer Center for the donation. All of this travel and related expenses would be covered by the NMDP: airfare, hotel, transportation, food, and all the medical stuff.
So in mid-March before our DC trip I flew down on a Friday for a comprehensive physical: blood draws, X-rays, a physical examination, a consultation with a cancer doc, and an EKG. A funny story about the EKG: I was sitting in the exam room waiting for the nurse to come in to administer the EKG. The nurse entered, a spunky little 5-foot-four 110 pound black girl. As she was readying the EKG machine, she asked me to take off my shirt and lie down on the table, which I did. She turned around and looked down at my torso, which, as those of you who know me well are surely aware, is replete with manly, manly man hair. Her eyes widened. "Um. Wow. I think we're gon' have to
shave you." Fortunately she didn't have to shave me, and we were able to get the EKG done with the help of what appeared to be electrical tape. That was great for sticking the leads on me, but not so great when it came time to remove them.
Having cleared the hurdle of the physical exam, I was all set. I flew home the next day. A couple of weeks later, the day after I got back from DC (Wednesday), I boarded a plane for San Fransisco and was off again. The NMDP said they'd be willing to fly my wife out as well, so we decided she'd take a couple of days to regroup after the DC trip and would fly out to meet me on Saturday. I got to S.F., found my driver at the airport (a super nice guy named Bob who travels the world as a professional driver and courier) and made it to my
hotel.
The hotel was really nice. They had upgraded me to a big room with a terrific view of the beautiful landscaping, flowers and trees, and the creek which ran through the middle of the hotel grounds. I Skyped with my kids and wife and went to sleep, a little anxious for the coming days' events.
The next morning I showed up at the cancer center at 8:00 for my neupogen shots. Neupogen is the commercial name for filgrastim, which is, as it was explained to me, a drug that will basically make your immune system kick into high gear. This is desirable because it causes your body to produce a bunch more blood-producing stem cells, the collecting of which is the whole point of this whole procedure. Neupogen had a couple of interesting side effects, though:
- appetite suppression
- a weird metallic taste in the back of my mouth
- increased heart rate
- slightly raised temperature
- bone pain (mostly in the lower back, sternum, ribs, femurs, and skull)
- bone pain
- also, bone pain
I received neupogen shots every morning Thursday through Monday. On the third day I did ask for a stronger prescription, and they gave 10 pills of Vicodin which I carefully rationed over the remaining days. Thursday and Friday were pretty uneventful: hospital in the morning, bus back to the hotel, work from the hotel room till closing time. Since my meals were on the NDMP's dime, I tried to eat actual non-fast food, and had some pretty good meals:
fresh fish, a
couple of INCREDIBLE reubens, and
Thai food, to name a few. All in all those two days were pretty uneventful, as I was alone and didn't feel like venturing out thanks to my bone pain and no-car having.
Saturday, however, Andrea and Gwen arrived and returned sunshine to my life. Saturday afternoon we pretty much just took it easy, watching movies in our hotel room and taking a nice mid-afternoon nap.
Sunday was our big day: we decided we would explore Stanford together after my morning injection. The highlights included:
Sunday night we went back to the hotel, had dinner, and rested up for the Big Day.
As an aside, I am so
glad Andrea came down with me. Having her and Gwen there really changed my mood and outlook for the whole thing. I am blessed to be married to the perfect woman for me, a woman who understands me, a woman who laughs with me (and at me, sometimes), a woman who likes the things I like, a woman who I adore. Having her down there with me really transformed my trip into something great.
Monday morning we arrived at the cancer center at 7:30 for my final shot. Here we hit a bit of a snag: apparently babies are not welcome in cancer centers. The staff had failed to mention this to us Sunday when we happily brought our 6-month-old to the apheresis center for my shot, but they unceremoniously told Andrea to take the baby and get lost Monday morning. We were both a little bit put out. Not so much at the rule, even, but that about a dozen people along the way could have let us know beforehand. We ate breakfast, I put Andrea and Gwen back on the bus to the hotel, and returned to the cancer center to do the donation an hour later.
PBSC donation requires you to sit in a chair hooked up to an apheresis machine, with a big steel outflow needle in one arm and a return needle in the other arm. The blood exits your body and enters a centrifuge where the stem cells that will be used for the transplant are filtered out, then returns into your body through the return needle. A couple of interesting things during the donation:
- This requires an anticoagulant to be added to the blood, which binds to the calcium. This means you suddenly become calcium deficient, which feels like a cross between a buzzy-feeling sort of electric shock and the pins-and-needles feeling you get when a part of you has fallen asleep. This feeling mainly covers your face and head, and got pretty intense, especially at the end of the procedure when they were pumping the rest of my blood back into me. A calcium drip in my IV helped somewhat with this.
- A steel needle means you cannot move your arm, at all. The procedure lasted about five hours, which is a pretty long time to sit totally still. At one point I had to, erm, powder my nose. This proved interesting, as it involved the nurse handing me a jug, pulling a curtain around my chair (it was a busy room full of about 6 other apheresis machines and probably 20 people in there), and having to try to maneuver everything into alignment totally one-handed. Happily though, I did not pee on myself much.
- The donation itself it pretty much the most boring part of the whole process. I read a book, browsed the internet on my phone, and watched some movies on my laptop, but I'm pretty sure the clocks in that room were all running really slowly.
- I'm pretty sure this is the plot of a Law and Order episode, but apparently the patient is going to have my DNA in his blood from now on. These stem cells will find their way down into his bones and regenerate his marrow, which will then, hopefully start pumping out lots of the good red stuff. Those new red blood cells will contain my genetic code. Kinda cool!
After 5 hours, 24 liters of my blood had been processed. An adult human male has got about 6 liters of blood, so basically they pumped all of my blood out and back in again 4 times. An important-looking lab-coated fellow came in, signed some papers, placed the bag containing the product into a cooler, and rushed away before I was even unhooked from the machines. I sat for a few minutes while the tingly/unsteady feeling went away (it actually took a few hours of being back in the hotel room before it totally subsided) then took the bus back to the hotel room. I was done!
The next morning we boarded the plane and headed back to beautiful Idaho. I have to say, after spending two weeks in Washington D.C. and San Fransisco/Palo Alto, I was really, really glad to be home. I am so happy I live where I do and not in a big city. As we exited the airport and walked across the parking lot to our car, I looked around at the fields and sky and mountains in the distance and thought, "Finally, I'm home. I can breathe again."
So what now? Well, this is where my part of the story ends and the important part begins. Hopefully the transplant is well received and the patient starts generating good blood soon. It's very possible I'll never know the outcome: privacy laws prevent information from being exchanged between the donor and recipient. But I'm keeping my fingers crossed, and keeping him in my prayers. I don't know if he has kids or a wife or siblings or a dog or none of the above or all of the above, but whatever his lot in life, I'm rooting for him. I hope that this experience I've had can give him some more time to enjoy with the people who love him.
A lot of people over the last few months, from coworkers to nurses to people in our ward, have asked me "Why? What made you want to do this?" I've thought a lot about the answer to that question, as well. There are a few reasons.
Foremost, while I firmly believe that we're headed to a much better life after this one, a life free of the disease and pain my unknown friend has been suffering, I don't believe that this life is simply means to an end. Life is precious and priceless, meant to be filled with joy, and if there was anything I could do to possibly prolong the life of another of God's children, how could I say no?
Secondly,
Caleb Acheson, a great friend of mine and my home teaching companion, received a bone marrow transplant when he was about 14 and it extended his time here on Earth two years. That was two years spent with his family, time spent hunting, fishing, and vacationing in Hawaii. Two years spent with those who love him. Every time I thought about why I was doing this, I thought of Caleb and the possibility of blessing someone else's life like Caleb's life was blessed by that kind woman in Germany who selflessly donated for him.
This is a really long post, and I'm sure I left a bunch of stuff out, but I guess it will have to suffice. This was a really, really neat experience for me, and I wanted to record a little bit about it for my friends and family and for myself to remember down the road. I'm so glad I was able to do it.
We shot a bunch of pictures during the trip. Here are several.
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| the hotel room interior |
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| the hotel room exterior |
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| Skype-ing with my girls |
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| the entrance to the Stanford Cancer Center |
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| waiting to receive my shot |
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| Gwen in her carseat while I waited to receive my shot |
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| Getting my neupogen shot |
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| a cactus plant in the Arizona cactus garden on the Stanford campus |
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| a hummingbird |
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| Andrea worked hard to get these shots of the lizard and hummingbird |
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| one of the sphinxes guarding the Stanfords' mausoleum |
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| Andrea next to Rodin's Gates of Hell |
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| babies in hell??? |
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| Rodin's Thinker |
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| me and Gwen in the Memorial Church |
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| the pipe organ in the Memorial Church |
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| Andrea and Gwen at the top of the Hoover Tower |
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| about to enter on the morning of the donation |
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| all hooked up to the apheresis machine |
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| out goes the blood |
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| through the machine |
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| the final product: the bag containing the stem cells to be used for the transplant |
