Archive | March, 2011

Drive

31 Mar

I’ve always known I work with incredible people. But yesterday, the overwhelming support from my colleagues in DC and across the country reaffirmed just how driven they are.

My Powell Tate coworkers really rocked out the Be The Match Registry Drive yesterday – more than 40 people got swabbed! In the land of fast-paced DC-ers who jump from conference call to conference call, that’s huge. Donations for Be The Match were collected and many who couldn’t make it committed to order home registration kits through the Be The Match website. Not only was it successful numbers-wise, but it was also pretty! Check out our primped office:

The Powell Tate | KRC | Sawyer Miller office all spruced up for the big day.

The beautiful Heather Cable helping Andy Spiegel, CEO of the Colon Cancer Alliance, do his registration paperwork.

Melanie Simmons, our office manager, helping people get swabbed.

It costs Be The Match $100 to register each new potential donor, so anything you can give is moolah to a worthy cause.

Pam Jenkins, president of Powell Tate, said it best in her PT Insights blog post: “sometimes it takes bad news to motivate us to make a difference.” But not everyone follows through with the enthusiasm my D.C. colleagues have. A huge thank you to the entire team who put in extra hours to plan the drive – from designing the flyers and website to collecting registrant names to volunteering at the drive. You guys are really making me miss you!

Finally, Harris Diamond, CEO of Weber Shandwick, sent an office-wide email not only to the Weber Shandwick network, but also to the gamut of agencies that belong to our parent company IPG, encouraging everyone to consider joining the Be The Match Registry. You can bet that message was heard far and wide – not only because it reached so many, but because we’re all PR-ish people who can’t keep our mouths closed when it comes to this stuff. I’ve received heartfelt messages and commitments to join the registry from Minneapolis (where I interned in college), to Detroit, Austin to New York and Seattle. Harris definitely set the tone when he said that joining the registry is “an opportunity to help out a member of our family.” I certainly felt that way.

I’m so lucky to have an entire network of supporters behind me, willing to lend their voices (and bone marrow). Now I’ve just got to hurry up and get back to DC!

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Being Picky

30 Mar

I hate to be brief, but it’s been a long day of appointments at Mayo Clinic today. I’m also overwhelmed by the wonderful support shown to me today from Powell Tate | Weber Shandwick and their parent company, Interpublic Group (IPG). I’ll write much more about that tomorrow.

Today we met with both my pediatric and grown-up hematology/oncology docs.  Thankfully I can cater to both, so I’m lucky to have coordinated care from the best of both worlds. The teams huddled last week, were presented all my glam details and devised a plan.

It turns out that they’re being extra picky with my match. Two of the four donors are already perfect matches (!) and we’re still waiting on the details of the final two, including whether those donors have been pregnant. Pregnancies make women develop antibodies, which we’d rather not bring into the mix. Anything to reduce the possibility of graft-versus-host disease, where the donor marrow recognizes my body as foreign and attacks it. But we know one of those perfect matches is a 20-something male, or “tall, dark and handsome” in healthy bone marrow transplant-speak. They say I’ll get the final word by the end of the week.

Once they choose a match and a back-up match, both donors will be asked to get a physical at a local transplant center. Hopefully both matches are all up on their fitness and we won’t have a problem. From there, the donor picks a date to donate and we work backwards from there. For me, that includes an extensive work-up of basically everything my body can do – lung function, kidney function, heart function – the works. Next I’ll go into surgery to have a Hickman line installed so they can give me all the drugs they want without having to always poke my arm. Then I’ll check in for my lengthy hospital stay. We’re hoping I start chemo about the third week of April.

In the meantime I’m fending off a blood transfusion. My hemoglobin is down to 7.9. Apparently I should be sleep-walking with that level, but I think (and my doctors believe me) that I feel good enough to go without. I’m also having another bone marrow biopsy next Wednesday. Although there are no blasts (symptomatic of MDS turning into AML) showing in my weekly blood work, they can develop in the marrow before manifesting in the blood. The docs want to know exactly what we’re dealing with, and I’m all for it.

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The Sunny Side

29 Mar

I know I’ve been quiet lately. It isn’t you. It’s me. I ventured to the gated community suburbs of Chicago on a much-needed trip to visit Jimmy. He just happens to be taking both his DO and MD medical school boards at the end of May, so all this bone marrow transplant stuff is far from friendly timing.

During my Chicago-land frolics, it became increasingly apparent to me that there is in fact a sunny side to low blood counts, namely:

  1. I can push people down and they can’t push me back.
  2. I don’t have to clean a bathroom for at least six months.
  3. I can take naps whenever I want. Even at inopportune times.
  4. People frequently offer to buy me steak in the hopes of raising my iron levels.
  5. The colorful bruises I’ve been known to collect can’t be definitively attributed to clumsiness.

In addition to my ability to ward off blood transfusions for a week, my visit included several much-needed sunny sides. Among them:

 

We caught the early show downtown at Andy's Jazz Club, meaning we saw a band of 70 year-olds on the brink of swaying their hips too hard.

I visited Sacred Heart, the nursing home convent of my late great aunt. Sister DeLourdes, one of many nuns here who spent time in New Ulm, just turned 100!

I witnessed manly medical students playing dodgeball in jean shorts. Competitively.

Now, with images of stretching jean shorts dancing in my head, I’m preparing for tomorrow. It’s a big day. Not only is Powell Tate hosting a Be The Match Registry Drive at the office for all DC-ers (stop by and get swabbed if you’re in the Metro Center area!), but I’m meeting with my docs at Mayo to hear the gameplan. Not only am I anticipating the unveiling of my lucky match, but I hope we’ll get a timeframe of when the donor is able to do the good donating deed. I’m hoping the ball moves pretty quickly from here.

I’ll update tomorrow on both counts. Thank you for your continued support.

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A Simple Swab

23 Mar

A Simple Swab Could Help Save a Life. That’s the message Powell Tate – the Washington, D.C. public affairs firm where I work – is going out of its way to share with our entire building.

Next Wednesday, March 30, my colleagues are holding a Be The Match Registry Drive, encouraging all the business-suited people in our building to take a brief break from their Blackberrys and get a cheek swabbed. I knew all along I had stellar colleagues, but when news of my needed quick departure from D.C. came, they were not only supportive professionally, but personally. I get notes almost daily from a coworker or two telling me the Nerf gun on my desk still works (thank God).

My colleague Clare has led a dedicated team to put it all together, even though she’s in the middle of planning an April 2nd 5K race in honor of her son Ben. Proceeds from Ben’s Run will benefit the Blood and Marrow Transplant Fund at Children’s Hospital in Washington, D.C., the same hospital where I was diagnosed.

I had registered for the BEN-e-fit (ah, plays on words) a few months ago, hoping this could be my first 5K, but apparently having grossly diluted blood precludes one from doing anything in which I would almost definitely trip on my shoelaces and land face first in pavement. I’ll have you know I would have been at the front of the pack – this girl used to run the fastest mile in high school. Please consider donating at http://bensrun.weebly.com or, if you’re in D.C., register to run!

On top of that, Padilla Speer Beardsley – the Minneapolis agency I interned at before moving to D.C. – hooked me up with their client….drumroll….Be The Match. You’re now looking at a national Be The Match spokeswoman! They’re also putting together a bone marrow registry drive later this spring – more details to come.

Others are putting together teams for this spring’s Be The One Run around Lake Harriet in Minneapolis. And so many of you have told me that you’ve enthusiastically swabbed your cheeks and joined the Be The Match Registry.

There are just a few of the ways I have felt your overwhelming support over the last few weeks. I so very much appreciate your blog comments, Facebook messages, emails and everything else. Even if I don’t respond right away, please know that I’m reading everything and love hearing from you.

 

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A Perfect Match!

19 Mar

“Jenna, we got the final results back of donor #1’s blood work and it’s a perfect match. Ten out of ten!” On the backroads on my way home when nurse practitioner Julia called, I swerved into the nearest driveway to soak up the news.

“This is really good news,” she continued, as if she had to tell me. I knew I was a compatible girl, but obviously I’m not playing hard to get.

“Blood work results for donor #2 are pending and the other two donors are getting blood work early next week. I think you’re going to have more than one perfect match (knock on wood) and we’ll be able to be selective of who’s the healthiest.” I just sat in that driveway for a while, thankful for how quickly this is moving and for how lucky I’ve been in finding a genetic suitor.

But this isn’t necessarily out of the ordinary for people like me. According to Be The Match, 93 percent of white patients find a match.  But things aren’t so easy for people with diverse backgrounds. Hispanic patients have a 72 percent chance of finding a match while Asians find a donor 73 percent of the time. For African Americans, that number drops to only 66 percent. Can you imagine that waiting game? So, if you’re of a diverse background, please especially consider joining the Be The Match Registry. Or, consider donating to Be The Match so they can do even more to recruit people of diverse backgrounds to the Registry.

 

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Eight Out Of Eight

17 Mar

A lot has happened in the last few days. I’ll catch you up.

First, we went to Mayo on Tuesday to get my fancy bloodwork and meet with Julia, the pediatric BMT nurse practitioner, who filled us in.

The Road to a Match

Julia and the National Bone Marrow Registry Team are in hot pursuit of finding me a perfect match! In our meeting, Julia brought up on the screen exactly how they measure my match. There are 10(ish) genetic points they measure. The first eight are pretty straightforward, while the last two are a bit finicky.

I created a little sample below of what the results look like. These aren’t our real genetic codes (like I’d give that to you), but it’s interesting to see how things shape up. You can see how Jack and I pull a number from each of our parents. I like to call it our own little Maury DNA test to prove the redhead milkman theory false. While it was proven that we’re definitely related, we’re of little bone marrow help to each other.

Jenna Mom Dad Jack
13, 26 2, 13 26,4 4, 2
15, 11 14, 15 11, 5 11, 14
3, 17 9, 18 17, 3 3, 9
8, 6 27, 6 8, 21 27, 8

But then she showed us a new column – the column of a potential donor who has already gone in for his (or her) bloodwork.  As Julia ticked down the list, the donor’s numbers echoed mine exactly.

“Thirteen, twenty-six, thirteen, twenty-six. Fifteen, eleven, fifteen, eleven.”

So far we’re an 8 of 8 perfect match! They should have the results of the final two measures by the end of this week.

Three other potential close matches are receiving bloodwork soon – one tomorrow, Monday and Tuesday. We expect to have their initial eight scores by the end of next week and the final results by the week of March 28. Two of the donors are from the U.S. and two are international, which could make me a cultural hybrid delight. It’s already apparent that I have the best potential donors ever because they’re moving so quickly to get bloodwork done. THANK YOU, wherever you are!

As for the rest of the process, we received a library of materials from Julia. It was very difficult for my mom and I to read about the extensive BMT process. I’ll write more about next steps in a future post.

Let’s just say I’m not looking forward to this.

Pediatric BMT

It’s been decided that I’ll be treated in pediatrics, not only because I can dominate a good game of Candyland, but because all the doctors know me very well. “We all talked about it, and we would really like to treat you here, if you’ll have us,” said Dr. Arndt. I can’t say no to that.

While the adult BMT doctors may be more appropriate in some ways (I guess I am a grown-up officially), these doctors are very familiar with my case, are coordinating with adult BMT, and are putting me up in what is really the penthouse of the hospital – pediatrics. I know this from my extensive stays there as a senior in high school. There are actually butterflies painted into the walls. Plus, I’ll always be at least somewhat of an Easy Bake Oven-baking, Pretty, Pretty Princess-playing pediatric patient because my original cancer (osteosarcoma) is a pediatric cancer.

Field Trip to the ER

The reason I didn’t write earlier was that yesterday was a bit dramatic. I got sick in the middle of the day and ended up in the ER after a bad reaction to all the antibiotics I’ve been on. My blood counts are also plummeting (8.3 hemoglobin and 25,000 platelets), so they’re watching closely for when I need a transfusion. At this point I’m just ready to have them keep the IV in my arm.

I’m home, on some different medications and am doing better. We suspect I’ll need a transfusion or two in the next few days, which really wouldn’t be a big deal if it weren’t for the needle pokes.


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Taking in the Sights

14 Mar

I think I’ve finally weaned off my boxful of prescriptions from last week’s surgery. Now, with several new holes in my mouth evident only to me, I’m a whole week closer to transplant time.

Last week my brother bolted from Minnesota in a van cramped with seven college dudes on a spring break road trip stretching from Nebraska to Colorado to Nevada. My dad asked for daily updates via text. So far we’ve got: “Day 1…alive.” “Day 2…alive.”

Suffice it to say I’m getting cabin fever. I miss DC. I miss late-night metro rides with stranger passengers whose behavior could easily land them a viral video or two on YouTube. I miss working next to a church so old that Jefferson Davis once prayed there. I miss lapping tourists on the sidewalk just because I like moving fast.

My parents knew I’d feel like this as soon as the anesthesia wore off.

So, to remedy things, my dad came to New Ulm yesterday with a two-pronged approach: look at used car lots in the hopes of finding some cheap wheels whilst stopping at all brown (historic, to the lay person) signs along the road.

 

My dad keeps a pair of binoculars in his car to read historic signs along the road. This is a trait I will soon continue.

 

Anyone who has lived in New Ulm knows you need a car or you very well may go crazy. Coming from DC where the Metro gets me around just fine, and without any junkers lying around to borrow, I’ve begun my car search. “You’re almost 25,” said my mom. “It’s time.”

So with an eye for used car lots, my dad and I drove to Sleepy Eye, stopped in Essig for fun, out to Courtland, and back again, stopping in between for the sights: a string of coyotes creepily hung by the hind legs in someone’s back alley, the hill overlooking New Ulm where Indians camped before they attacked the town during the Civil War, an old shack beneath the smokestacks that my dad swears was a good bar in the 80s.

Things are also moving in DC, where my roommates have graciously packed my belongings to be shipped to the Motherland. Since my lease ends in early summer, I’ve found a sublet.

 

Providing joy for my roommates.

 

No more living in a DC apartment building where Russian spies hide out and local Pentagon-types make you look like a weakling in comparison at the gym, but there’s plenty of fun to dream up around New Ulm, too.

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