It’s You!

18 Nov

The room was expansive, sprawling with people from around the world who recruit potential bone marrow donors and then coordinate most of the world’s bone marrow donations. Even people from Ulm, Germany, the ancestor of New Ulm, Minnesota sat in the back corner. And among the world map of tables were a few in the front packed tightly with my dearest family and friends.   

Maxine and I were in separate “green rooms,” being held apart for just a few more minutes. Amid the excited anticipation, a few TV interviews immediately preceding our meet allowed me to focus. The reporters asked me to contemplate what it was like finding Maxine, hoping she would come through for me. I remembered the anxiety and the waiting, the feelings of doom and hope, the family and the strangers were. I was rehearsing all the highlights and penciled notes in the margins that I had marked in my latest cancer chapter, like I was studying for the test of meeting Maxine.

It was time. I waited backstage while a video played to the audience, retelling that cancer chapter. I couldn’t pay attention. I was trying to figure out which door Maxine sat behind. And just like that, the video was over and Be The Match’s Chief Medical Officer Dr. Dennis Confer called me to the stage. I think everyone stood.  He asked me some questions and I answered. Then they played Maxine’s video. In it she wondered why what she did was such a big deal. “I would like to believe anyone in my situation would have done the same thing,” she said.

And then, I swear Dr. Confer’s voice was like the voice of God when he boomed, “Jenna, meet Maxine.” 

I surveyed the room frantically trying to figure out which door from which she would emerge. Maybe the ceiling? Or a trap door? By the time I saw her, she had only made it about halfway to the stage. The room was so big. I never imagined indulging the old run and hug, but I couldn’t help it. I awkwardly flung myself at her and she let me. She looked just like I thought she would. Her embrace felt familiar as I latched my cheek on to hers. “It’s you!” she said. 

It was more than Maxine that overwhelmed. It was the entire room. It was the coterie of Be The Match-ers before me who have built a registry that let me and so many others find their match, their shot at life. It was the other cancer patients and transplant recipients who went before me, each case an experiment in building the medical knowledge to treat successfully today. It was the patient advocates who made sure I had health insurance and long-term disability rights. It was the Rhode Island Blood Center workers who had done the work my family ached to do in coordinating all the logistics that went into Maxine’s donation. And it was those two tables of people I love so much and who love me right back, no matter what I put them through.

Gratitude is perhaps the best word to describe it all. And now, we’re moving on. The best part is Maxine will be a part of my forthcoming chapters.

My favorite moment – Maxine and my mom

Me and my dad all giddy

My significants – Jack, Jimmy and Maxine

Check out these wonderful WCCO and MPR stories to see more.

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Meeting Maxine

14 Oct Jenna Match Tweet

We’ve waited. Girl, have we waited.

Throughout the last six months, I’d like to think Maxine and me have had a bit of a love affair. I have the “in” on her ambitious Halloween costume. I admire her loyalty to her favorite musician – when his tickets were too expensive, she settled with standing outside and holding her ear to the back door, only to be offered free floor tickets later for her resolve. I wonder at her artistic photos and have fallen for her cat Bucky, too.

It has been fun to trace our both very online lives and see where they intersected in the year we couldn’t know one another. My favorite:

But what I love most about Maxine is her unassuming altruism. In our first Skype date, I was finally able to ask her why she joined Be The Match in the first place. Leading up to my transplant, my family and I had ventured fantastic stories about why a then-19 year-old had joined Be The Match. She must have had an emotive connection, a reason she would be on a list like this so young.

Well, Maxine has always – well, for the few years she could – been a big believer in blood donation. A freshman in college, she went to a blood drive on campus with an empty stomach, knowing full well the spread of food they would offer post-donation for replenishment. But when the nurse took her temperature she determined it too high for donation. Maxine was torn. Could she silence her stomach growls and take one measly piece of pepperoni for her efforts before darting to class? She walked over to the card table holding the pizza boxes and, next to it, was the Be The Match registration table. So she joined – for a slice of pizza.

And not only that, but when Be The Match called and told her she was my potential match, she went in for blood work only two days later. “Well, I didn’t have class, so why wouldn’t I?” she told me matter-of-factly. When my doctors requested that she donate actual marrow, a surgical procedure as opposed to the more typical, non-surgical procedure of peripheral blood stem cells, she agreed without reservation.

This is what I admire so much about Maxine. She joined for a very regular reason, and she stayed committed throughout the process just because she determined it the right thing to do. And she’ll admit it. She doesn’t embellish and she doesn’t hero-icize.

Maxine restores my confidence that pure, selfless altruism is alive and well. Her humility will inspire me my entire life. I’m so blessed to have her DNA.

My family and I get to meet her on November 10 at the Be The Match National Council Meeting in Minneapolis. Girl, we can’t wait.

 

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It’s Her!

7 Jun

It’s her! My donor! My long-awaited perfect match, Maxine.

Mayo Clinic called me yesterday and, with a simple email, a girl named Maxine’s contact information was spelled out before me like any other name in my address book. Along with her info was a letter saying she had left for India in May and would be on the other side of the world from me for a month. 

Of course I couldn’t help but dive right into some dedicated Facebook and Twitter stalking. “M-a-x-i-n-e,” I typed into the blue box, enamored by the character of her name. A picture of a young woman peered back at me through her super-sized sunglasses. I immediately began sobbing, struck back to a year ago when they said a stranger would let me assume her DNA and grow it in my hones. I didn’t expect such a reaction but I guess I was just overcome with joy. Or, since I have never been able to cry at appropriate emotional times (but will cry during Farther of the Bride or when I hit a squirrel with my car), maybe it’s her bone marrow slowly bringing the right life back into me. She said she cries over emotions all the time.

I soon realized we share so many interests – she loves the Backstreet Boys and could apparently give me a run for my money in a 90s sing-off. One of her favorite books is Walden. Her family means everything to her. She studies marketing communications as a junior at Emerson College in Boston, the school I begged my parents to let me visit in my dreamy college-searching days. They knew I was romantically confusing Ralph Waldo Emerson with the school and told me to stick to the Midwest (which admittedly was practical, considering I had just finished chemo two weeks before college).

Be The Match asked if we could possibly wait until their national conference in November to meet in person. Although neither of us felt like we could linger any longer, the opportunity means that our families will be included in our meeting, too. Plus we can share our run-and-embrace with the employees of an organization that has become like family to us, too (check out her stellar performance as woman #1 in this Be The Match-Rhode Island video). So we agreed to wait and will swoon over Skype dates until November.

Maxine

This morning she posted a photo of her at the Taj Mahal. Later she happened to unearth enough WiFi at an eighteenth century Indian palace to email me again. Although she’s still so far away, her incredible altruism for a stranger has never felt so intimate and humbling. I can’t wait to discover more about her.

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Landed

6 Apr

I told you I would write when I had something worthwhile to share. So here goes:

I (finally) landed a job! I accepted Wednesday. For months I have tried to assess my body, my energy, my chemobrain. My will to return was clear, but would I be too tired to wake in time for a 9 a.m. meeting and last until a 5 p.m. conference call? I think I can, I think I can.

The best part? The job is at Golin Harris in downtown Chicago, meaning that after three years I’ll finally live in the same state as Jimmy. It’s about time.

When I left my job near the White House and my apartment near the Pentagon the morning after I was diagnosed last year, I packed only one suitcase. I think that is the only time in my life I have grossly under-packed.

As I had the opportunity to tell Kerri Miller in an interview on Minnesota Public Radio yesterday, “You have to always be ready to have your life interrupted in a big way” when you’re a young adult with a (mega) cancer history.

Boy, did I mean that.  And not just for me, but for those close to me. Suddenly my dad devoted a two-hour drive to Mayo Clinic nearly every night after work; my friends confided less in me for fear I’d respond, “Get a real problem.” And unlike most interruptions, cancer lasts longer than it should, and longer than most realize.

These last months have been the hardest yet mentally. When you’re no longer going through treatment, no longer so visible, no longer so obviously sick. Figuring out how to transition back to work and not lose your healthcare in the process. Having an appetite to go out while still living at home with your parents, most of your friends in their city apartments with big-girl jobs two hours away. You can only hold people’s attention for so long, and you only want their attention for so long. Your hair starts to grow back. People assume you’re a hipster, not a cancer patient. People stare and wonder about your scars instead of look at you with empathy.

All that free time. I felt guilty for not making the most of it, reading too few books and watching too much Project Runway. Wasting time feels ungrateful.  As my new pen pal Suleika Jaouad, who entered the hospital this week for her own bone marrow transplant in the hopes of an MDS cure, said in her most recent blog post in The New York Times, “Since the diagnosis, my life has been a slow emergency, my world a waiting room.”

I’m sick of waiting around, yielding to the pace of cancer. I even gel my hair into a purposeful faux-hawk (you know I can’t pull off a total mohawk) these days to make my hair look like “I meant to.” (sure, photo to come)

I’m ready to get back my momentum. I’m shutting the door on the cancer crawl.

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Good Riddance and Happy New Year

1 Jan

It’s incredible what passes for a year. It elapses quickly but when you think back to December 31 of 2010, you laugh at your unbeknownst self who could never have anticipated all that was to come. 

In 2004, after the close of my first year with cancer, I looked back on the year with gratitude. Gratitude that I could wipe my forehead with a giant “whew!” and move on to all that I had been looking forward to in 2005 and beyond. Gratitude that I had a life to look forward to. Gratitude that I had learned so many grown-up lessons and was given years to practice them. And gratitude that it was all behind me. Lessons learned.

All that’s true again this year. But I’m pretty sure I had those lessons down pat after the first time around.

So let me be real. This year kind of sucked.

I’m not going to romanticize or sugar coat. I’m not going to search too deeply for silver linings where they aren’t deserved. I learned more about suffering than I let on here. I learned how to make my own fun, how to be alone, how to sit still, how to be more independent than perhaps I should be, how to persevere. Hopefully those lessons yield to resilience in 2012.

But I guess it’s all how you look at it. Just as I can compare to December 31, 2010 when all was right, I can also look to February 18, 2011, when all was wrong. When I was diagnosed with MDS and the stretch to 2012 seemed unfathomable. Or March 2, when my brother Jack proved a mismatch and the anxious search commenced to find an unrelated donor while hoping, hoping, praying my MDS didn’t ripen to AML. Or for those two weeks in May when the excruciating, confusing pain in my legs had us worried I may not walk. 

And now, thanks to my selfless donor and resolute medical team, none of these are concerns any longer. I have been blessed with an incredible caregiver – my mother who slept next to me every night and who amused me, a recluse in New Ulm, for months. I kept a committed boyfriend who cradled all the baldness, anxiety, fluids and scars and returned them with juvenile jokes. I relied on a father (also stupid, but welcome, jokes), a brother, grandparents and other friends and family with the liveliness to heal. I benefitted from years of advocacy work from patients before me who paved policies that eased it all. I came at just the right time, when my Mayo doctors had armloads of research to give me the best outcomes, and when Be The Match had 25 years to build an extensive list of committed donors, one of whom would donate to me when she was only 19. I had great health insurance, an accommodating employer, a cozy home in which to recover. My hair is now reddening and spike-able.

With that, I think it’s time to formally leave The Redhead Report a relic of last year. It’s not that I have nothing left to say, but I’m not sure The Redhead Report is the proper venue in which to say it. I started this blog to keep all of you, dotted across the map, on the same page when it came to my treatment. Happily I can say treatment is mostly over now. And as much as I love a good opportunity to embellish, don’t let me pretend my life is interesting enough for a blog. And that’s just great. I was given an unearned spotlight and it’s time to enjoy the anonymity of any other healthy girl.

Me, Jack, Lucy and Mom

My dad and me

Festive Jimmy and me

I’m not sure where the next few months will take me, but I’ll post when I have a relevant update to give. (So you don’t have to keep checking back, sign up for an email alert at the side of this page.)

I’m indebted to all of you for sticking with me this last year, for embracing me with such support and sincerity. For your comments, your prayers, your notes and your thoughts. Thank you. Thank you. I couldn’t have done it without you.

And so 2011, good riddance. I may have good things to show for you, but the credit isn’t yours. Here’s to a welcomed Happy New Year, 2012!

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Should Bone Marrow Donors Bring Home The Bacon?

8 Dec

By now you’ve all heard about it, I’m sure.

Last week a federal court decided that (some) bone marrow donors should be compensated. Since 1984, it has been illegal in the U.S. to pay for organ donations, bone marrow included.

After much reading and thought, and after hearing why Be The Match opposes the decision, and after talking to my own doctors, I’ve come to think compensation may not be such a good idea. Allow me to put on my Washington, DC heels and tell you why I’m leaning that way.

The rationale in 1984 was that although bone marrow naturally regenerates (unlike other organs like kidneys), compensation was prohibited because the extraction method used at the time was painful and risky for the donor. It was feared that compensation would lead poor people to disproportionately undergo the procedure to earn money. 

But today, about two-thirds of bone marrow transplants aren’t really bone marrow transplants at all, at least for the donor. It’s more like a long blood donation (with five days of pre-donation injections). The process collects stem cells instead of bone marrow through a procedure called apheresis. Blood is extracted from one arm, goes through a machine that sorts the stem cells from the more mature blood cells, and the mature cells go back into the donor’s other arm. (check out the video from Be The Match)

The court decided that because this process is much less “risky” than traditional bone marrow harvesting and because blood stem cells are a blood product, compensation should be allowed.

Sounds great, right?

Not so fast. The court ruled that compensation should be allowed only for stem cells, not for traditional bone marrow.

Donors have the ultimate say in which method they will undergo, but doctors recommend to the donor their preference. Many doctors, including mine at Mayo Clinic, recommend the traditional way. My donor abided. Anecdotally my doctors have found that although transplants using stem cells engraft faster, they are more susceptible to graft-versus-host-disease. This can be a debilitating, expensive, miserable side effect – deadly in the worst cases.

But what donor would elect to have the non-compensated procedure vs. one that compensates?

There is no definitive research on which procedure produces the best results, but a long-awaited, multi-year study is due next week at the American Society of Hematology Annual Meeting. Until that study is published, I don’t think we should favor one procedure over the other based on monetary incentives for the donor.

Supporters of the court decision argue that compensation – $3,000 – $5,000 has been proposed – would incentivize more people to join the Registry.

Maybe it would. But would these new potential donors – many of whom may join when in a tough financial situation – donate 5 or 10 years later when their bank accounts are in better straits? Without altruism as their primary motivation, would they be willing to later donate uncompensated white blood cells if the patient’s transplant was unsuccessful? 

Moreover, multiple studies on blood and organ donation have shown that introducing financial incentives can “crowd out” donors who would otherwise give out of a sense of moral obligation or altruism. In an NPR story this week, a caller who had donated bone marrow said it would be “unconscionable” if he had taken money for his donation.  

But at the same time, I can’t forget that 3,000 people die every year because they can’t find a bone marrow donor. I can’t believe that statistic isn’t enough to drive everyone to register. Maybe payment would chisel down that number.

Be The Match has said they won’t change their policy against compensation (read why in their statement). As the world’s largest registry of potential adult bone marrow donors, I’m not sure how the new law would be implemented without them on board. The decision may still go to the Supreme Court. 

Maybe I live in a world too familiar with helpful people, good luck, and easy genes. But with the procedural split in how donors would be compensated, I’m just not sure compensation is in the best interest of the patient, which should be the ultimate concern. Perhaps the answer is more communication, more public awareness that a “bone marrow transplant” is not the same today as it was in 1984, especially for the donor.

Both types of donation procedures have become less risky, less painful. I’ve heard this from many donors, including my own. She said in her last letter to me, “Really, it wasn’t that painful at all. Just a little sore afterwards. I don’t know what the big deal is.”

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Shoots and Ladders

30 Nov

One more reassurance. 

“Good news! Your chimerism results came back and you’re still at 100%,” affirmed Julia as I wrestled Lucy with my non-phone hand. That means my blood DNA is still 100% my donor’s, leaving no room for my cancerous DNA to come roaring back.

These reassurances are slowly building, each time adding another rung to the ladder that will one day get me high enough to declare “all clear.”

But in the last month there have been a few “shoots” that chute me down a few rungs, making me question the real-ness of my recovery. I was on-and-off sick for most of November. Sickness in the chilling of November leads to de-motivation. At first I was proud of my immune system. It recovered a heck of a lot faster than my mom’s, which left her down-and-out with the same bug that provoked me. But just as I was doing victory laps around the dining room table it struck again a week later. And then again a week later. Concerned, Julia ran the gamut of tests only to come out empty-handed. More reassurances. It was just a bug after all.

So even though my hair is still less lush than the locks of most newborns, and even though I still get tired at noon, again at six and bed-ready by nine, I’m starting to let myself look up and maybe even over the ladder. 

Be The Match is starting to see over, too. This month they celebrated having facilitated 50,000 bone marrow transplants since the National Marrow Donor Program started 25 years agoThis video says it all: 

 

I was lucky enough to celebrate this milestone in the company of dozens of recent bone marrow donors at the Marrow Donor Appreciation Dinner in San Antonio. I’ll admit, my Minnesota mom and I definitely came up short in themed Texas swagger for the event. But what we lacked in wardrobe I hope we made up in appreciation (and attempted line dancing). Speaking at the event, I was almost at a loss for words. First of all, I couldn’t help but dream that my own donor was seated around one of those roundtables and that, after hearing the familiarity of my story, would leap up to the podium and embrace me while the country band played some gleeful Dixie Chicks song. It didn’t happen.

But the more I thought of it, the more inclusive my dream became. All of these people in front of me were my donors. They would have donated if it had been me on the other end just as they did for another stranger. One person donated despite having been in a serious car crash days before. Another had donated twice. Another kept donating white blood cells in the hopes that extra immune boosters would help their recipient survive. 

The responsibility of thanksgiving hit me. Most of the donors in the room had donated less than a year ago, all of us in that in-between, can’t-talk-yet stage. And after that many wouldn’t meet their recipients  because of international barricades, travel impediments,an unsuccessful transplant, or other reasons.

As one of those 50,000 transplant recipients, I’d like to think I have enough appreciation to go around. But I don’t think anything I could have said could convey my gratitude.

Salsa dancing to Enrique Iglesias with Jason, founder of the Marrow Me? Foundation, a fellow transplant recipient and an esteemed ballet dancer

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