Archive | April, 2011

Putting On Your Thinking Cap

30 Apr

Going into this whole unrelated donor thing, I’ve been especially privy to convo (my mom demanded Urban Dictionary on this one) about ways to increase the ranks of potential bone marrow donors. You’ve seen Powell Tate’s Be The Match Registry Drive and several of you have graciously signed up for the Be The One Run on May 21 in Minneapolis.

Well, for you Minnesotans who are still looking for a way to get involved, have I got news for you. Jennifer, a friend and former U of M coworker of mine, has organized a truly M-I-N-N-E-S-O-T-An effort – a Be The Match Registry drive at TCF Bank Stadium on the U of M campus! The drive will take place August 13 – right around my big 100 day mark.

The Locale: U of M TCF Bank Stadium

Check out her blog chronicling the planning (ahem, and you may want to read up on Inspiration #2). She also just launched an in-the-works website – Keep On Keepin’ On – where she is looking for sponsors, volunteers, donors, and any other skills you can offer. Jen is driven (ha, get it?), so I know this drive will be successful. But think of how much more successful it would be if you donned your maroon and gold attitude and contributed. Please email Jen at info@keeponkeepinon.org if you have a skill you’d like to propose.

And across the cornfields, Standford University’s Haas Center for Public Service and student group 100k Cheeks have been putting on quite impressive thinking caps to solve the problem of registering more donors, specifically minorities. Did you know that if you are of the South Asian demographic, your chance of finding a match is 1 in 20,000? 1 in 20,000, are you kidding me? Not okay.

Source: OpenIDEO.com

They’ve teamed up with OpenIDEO, an online platform “where good ideas gain momentum” to brainstorm ideas that could contribute to solving the problem. They look at the problem in four phases – Inspiration, Concepting, Evaluation and Winning Concepts.

Now in the last stage, they’ve announced their 10 winning concepts, which include solutions like adding “Bone Marrow Donor” to your driver’s license and leveraging community spiritual leaders to be cheerleaders for registration. Each solution confronts the barriers of bone marrow donation – fear, misunderstanding, cost, time, feeling rushed and cultural beliefs. I especially like the concept called BeTheInternationalMatch.org, which uses an interactive map to globally centralize location data for donor centers, national registries, donor drives and other information on a central site. Anyone who knows my love of maps – I did opt for a world map shower curtain, after all – could have guessed this would be a fave.

In the next few weeks, the students of 100K Cheeks will be launching a new phase to the project called Realization, which will enable them to share their implementation progress with everyone online.

It’s committed creativity like this that’s going to solve the problem. We need to think bigger. We need to think long-term. From someone who found her 10-out-of-10 match and knows how much hope it yields, I encourage you to follow and support these big ideas so that my white-girl-luck can be more the norm for all patients in need.

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It’s All Coming Back To Me

28 Apr

Surgery went well yesterday. They found my jugular vein alright to run the hickman through it. (how gross is the word jugular?) I’m now the proud new owner of chest tubes. Jealous? My new goal over the next few months is to not clumsily rip them out, pull them, or step on them when hooked up to my IV pole. 

The surgeon was definitely my kind of guy. Not only did he leave a heart-shaped bandage on my neck, but he preemptively painted my gas mask with strawberry Lip Smackers to make inhaling the anesthesia that much better. Ah, just like they did when I was seven when bubble gum was the flavor of choice. 

Another plus of pediatrics

I slept most of the day yesterday. I think they gave me a little too much anesthesia. Do you know that some people come out of anesthesia kicking and punching? The anesthesiologists specifically asked me if I did so beforehand. Apparently I need to be a bit more creative.

Practice chemo. By now I should be on varsity.

“I must admit, my anti-seizure meds are making me feel out of it,” I said to my nurse as I plopped down on the bed for practice chemo this morning. That’s a new one. Never had anti-seizure meds before, but I need them for this first chemo drug.

But a lot of this experience hasn’t been so new. It’s all coming back to me now. I think I’ve impressed with my experienced IV pole-maneuvering skills. And my dad knows exactly where to park in the ramp and rides the slow drivers who don’t. When I’m about to get an IV, my mom knows exactly when to distract me with Glee conversation. Maybe chemo regimen isn’t the best thing to be well-versed in, but it sure helps.

P.S. While I do not endorse the claiming of one’s ginger-ship as a flaw, this week’s ginger confession on Glee is worth bringing to light:

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The Beginning

26 Apr

Today it all starts. I should say “Uh, finally,” but I’ve succeeded in running around like my normal busy-bee self for the last few weeks, so I’m closer to, “Can’t I have just one more day?”

Since my platelets are still just eeking by – I know this because I ran into the kneeler at church Sunday and the blood vessels in my ankle took two minutes to bump, purple and get that disconnected look – I’m getting platelets by the bagful this afternoon in preparation for surgery tomorrow. I need a double-lumen hickman, a device they implant in your chest and hook up with some pretty serious arteries that lead right to your heart. The docs need the hickman for the chemo, blood transfusions, transplant, medicines, etc. Apparently some of my drugs get all up in a tizzy if they touch, so I’m opting for the double. I need the hickman so I don’t have 10 IVs in my arm.

They’ll keep me overnight in the hospital on Wednesday and then start practice chemo on Thursday. I know, “practice makes perfect,” but really? Chemo? Apparently one of the chemo drugs metabolizes differently in people, so I’ll get a fourth of a daily dose on Thursday and the PhDs can tell me how I do. Rest assured, I’ll spend most of the day watching royal wedding coverage. (btw, very disappointed in the Wild About Prince Harry documentary on TLC last night. Way too sensational.)

Friday and Saturday will be spent making the final touches for my royal wedding high school sleepover party. Lemon curd is in the refrigerator, vintage hats are airing out, crumpet molds are on the front shelf and pearls are ready to be strung. I think it will be the perfect send-off for the following Monday (May 2) when I’m admitted to the hospital for good to start real chemo.

Speaking of send-offs, my family made every effort to give me a proper hicktown send-off on Easter. Really made this girl proud. Just like the good ol’ days, we had Easter out at the family farm. I think my favorite moment was when Pat’s F150 got stuck in the mud and my grandma, ahead of everyone else declares, “Well for gosh sake, ya gotta push it!” And then proceeded to be the first at the back of the truck (in her Sunday best, mind you) freeing the truck from the mud. 

My cousins return from their muddier-than-anticipated excursion in the backwoods. They weren't allowed inside the house after this.

Seemed like a good idea to pull a couch atop a trailer behind a four-wheeler. A nice Sunday ride through the countryside.

Crusting in the sun to help the mud shake off

...and then Patrick the firefighter decides to bring the couch over to the burn pile. And my uncle Tony dresses up for the occasion.

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What’s It Like To Be a Donor?

20 Apr

A lot of you have been asking me a lot of questions about joining the Be The Match Registry

Since I’m on the other end of this equation, I turned to Stephanie Bluma, my lovely colleague from Weber Shandwick’s Social Impact team who is a veteran bone marrow donor. She is also one of several colleagues who star in this impactful new video from Weber Shandwick | Powell Tate about joining the Be The Match Registry (read Clare’s accompanying blog post):

Here’s the good word from Stephanie:

Why did you decide to join the Registry?  

I joined the registry while working for the United States Senate.  A drive was taking place in the lobby as we were all walking out to lunch so we signed up.

How many times have you been a bone marrow donor?

I have been a donor once. I have actually matched twice, but as the testing progressed, a closer match than me was found. 

How were you informed that you were a potential match and what was the determination process like?

I was called by the National Marrow Donor Center and assigned a wonderful advocate who walked me through the entire process.  After the preliminary match, I provided blood samples on a pretty regular basis.  Since I was a Senate employee, I actually was put into the program for service men and women who donate.  I always had my blood taken at Walter Reed by some very cute Marines.

What was the donation process like? 

The most time-consuming part of the process is the blood donations that take place on a pretty regular basis. The procedure itself takes a day. I was kept overnight as it was official policy at Georgetown Medical Center, but many donors do this as an outpatient procedure. Tylenol and a bit a sleep took care of all the side effects.

*Note: There are different ways to donate – one collects bone marrow and one collects stem cells. The treating hospital will recommend which method they want, (Mayo prefers bone marrow), but the donor has the right to decline a method.

  • Bone Marrow Donation: this is a surgical procedure in which liquid marrow is withdrawn from the back of the donor’s pelvic bones using special, hollow needles. Anesthesia is always used for this procedure, so donors feel no needle injections and no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards.
  • Stem Cell Donation: also called peripheral blood cell (PBSC) donation, this involves removing a donor’s blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm.    (Source: Be The Match, FAQs about Joining the Registry)

*Notey note: A major study is hotly anticipated within the next few years that examines which method has better outcomes. Until then, the preferred method varies among hospitals and doctors. 

Is donating painful?

I wouldn’t use the word painful.  It doesn’t exactly feel great, but it doesn’t hurt. You will not feel the procedure at all when it is happening. For the few days after you’ll be a bit tired. I often describe it as feeling like you went on a long jog and your muscles just need a bit of rest. You’ll also be a bit sore in your back, but that goes away very quickly. You will be incredibly well taken care of by doctors, nurses, family, friends and the donor groups. You’ll actually get sick of all the attention.

How much time did you have to take off work to donate?

I had the surgery on a Friday and could have easily been back to work on Monday.  My mother came into town (the National Donor Registry paid for her flight), so I took a few extra days off to spend time with her. We actually went shopping on Monday.

What are your feelings of donating marrow post-donation? 

I am very honored that I was given the chance to donate.  It is an easy thing you can do to literally save a life. Not many people get opportunities like that.

Is there anything else a potential donor should know?

There is simply no reason to not join the registry and donate. There are a lot of myths out there about the procedure that I know scare some people, but they really are just myths. After my donations, most people I know joined the registry and are hopeful they’ll get picked! 

………………………………………………………………………………………………………………………………………………………

I think Stephanie summed it up right nice. Although we all can’t be so lucky as to have hot-off-the-presses Marines do our blood work…

You know I’d love it if you all joined, but I must remind you that joining the Registry is a commitment, specifically you agree to:

  • Be listed on the registry until your 61st birthday, unless you ask to be removed
  • Consider donating to any searching patient who matches you
  • Keep Be The Match updated if your address changes, you have significant health changes or you change your mind about being a donor
  • Respond quickly if you are contacted as a potential match for a patient

(Source: Be The Match, FAQs about Joining the Registry)

Of course you always have the right to change your mind about donating because the program is voluntary. (New Ulm Area Catholic Schools service hours, anyone?)

Even with all the information available, there are still a lot of myths out there that keep people from joining. Look for my next post on the innovative ideas college students across the country are putting to work to remedy the problem.


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Good Enough

17 Apr

My nephrologist and I really hit it off. He was the first internal medicine DO (like Jimmy) at Mayo and his wife is from DC, so we spent a good extra half hour talking about the health policy of dialysis and lamenting my generation’s near refusal to pay for news. Oh, and he reads the Modern Love column in The New York Times every Sunday, too. Talk about earning a patient’s trust.

“I’ve got good news for you, and I know you need it,” he interrupted. I remembered why I was there. “I think your kidneys are fine. Good enough.” They are indeed a little pooped from the last round of chemo, but given that there are  really no options other than this bone marrow transplant, “good enough” is good enough for me. He’ll just work with Dr. Arndt to alter my chemo doses as necessary.

And so the countdown to BMT day continues. I’ve been trying to be creative in filling my time. 

On Friday night it was a dancing appearance at the bar in Lafayette, MN (population 530):

DJ night in Lafayette brings em out

Imani, even a honky tonk bar cant change my Single Ladies dance capabilities. Just working those red blood cells.

A few weeks ago I took pre-balding pictures courtesy of my aunt Ann (my mom prefers adult senior pictures, but let’s call it what it is):

Proof of my redhead-ism

And today I received a beautiful quilt from Jimmy’s New Ulm next-door neighbor Fran, which will be perfect for breaking up the blue and white of my hospital room:

Tomorrow I’ll round out my tests at Mayo and get a welcomed bag o’ platelets. From Rochester I’ll drive on to the gated communities of Chicago for my last trip in a good long while.

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On Simplicity

14 Apr

We got back last night after spending a few days at Mayo undergoing test after consultation after test. The doctors want to know my body really well before they start fooling around with it. The days at Mayo were triumphant – my mom started and finished The Girl with the Dragon Tattoo in less than two days and I got in some really good people watching.

We met with Julia yesterday afternoon and all the tests came back fine – except for my kidney test. That one is kind of important because it’s not the best idea to put grossly toxic chemo in your body if you can’t sift through it correctly. And apparently my dad’s curative idea of eating lots of kidney beans is not a solution. So change of plans today – I’m driving back to Rochester to meet with a nephrologist. It sounds like my kidneys are still pooped out from the last round of chemo. Hopefully he can whip them into shape. My platelets are also pretty low again, which partly explains the masterpiece of bruises I’ve collected. One would think I’ve been playing contact sports, not simply running into tables, doorways and walls… ah well, I’ll get a transfusion on Monday.

Sitting at Mayo the last few days, and sitting other places for weeks, I’ve pointedly felt the transition from my go-go-go self who relishes diving from project to outing to project again, to my new self who’s remembering the lessons learned on simplicity from the last time around.

I’ve become pretty set that the next six months of my life are going to be, well, boring. Boring and crappy. But boring and crappy is all perspective. I remember the days when it was huge if I just walked down a hallway. I remember being so thankful I could finally take a swig of water because my mouth sores had retreated enough. I remember when going to a high school basketball game was a big ordeal – and a big achievement.

I’m setting myself up for that mentality again, and practicing enjoying the small things that I know I’ll miss. Things like being in public places, eating fresh fruits and vegetables, and driving with the windows down and letting the wind blow my hair around – all things I can’t do during transplant time.

It’s not about setting my sights low, but it’s about being realistic. I’ve challenged myself to be more observant, looking harder at the simple things I’ve brushed by before that in fact are full of potential.

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Delay

8 Apr

My donor-ette and I had our first little squabble yesterday. My Be The Match coordinators presented her with two possible donation days: April 27 (my docs changed this to choice #1 since my last post) and a backup of May 4. She said she couldn’t donate until May 11 at the earliest. She has a big personal event in this timeframe, and of course we need to respect my donor-ette’s schedule. “That’s just the way unrelated volunteer donations go,” said nurse practitioner Julia.

I know she’s a volunteer donor. And I know this is a huge good deed of her. I’m thankful. Really, really, really I am. But sitting anemic at home, I’m sick to my stomach that this MDS will turn into the way more serious AML. It’s nerve-wracking to wait.

My mom tried to work her social worker magic, but Be The Match has their rules, and for good reason. All my donor-ette knows is that I’m a 24 year-old woman with MDS and the need is urgent. I just wish that “urgent” translated to sooner than a month from now.

But there’s good news:

  • I got the results of my bone marrow biopsy and there has been no change since my biopsy in mid-February. I guess this is the news that really matters if I can cloud out the above. Maybe if my MDS is indeed slow-moving, a week of dress season will be good. (I’m very upset that my bubble-boy time will take up almost the entirety of dress season.)

Also, I’m feeling a lot better since I received two units of red blood cells Wednesday. My hemoglobin had fallen to 7.4, so even walking up the stairs to my bedroom was difficult. But now, with two bags floating around inside me, I’m well enough to go to the University of Minnesota Relay for Life tonight! I was what some would call “overly committed” to Relay in college, having co-chaired it for two years, among several other American Cancer Society activities. Tonight we’re celebrating that we’ve raised more than $1 million since we started the Relay at the U in 2004. In honor of Brea, I’m bringing back this attitude tonight:

Me as an American Cancer Society "Survivor Ambassador" @ the 2006 Celebration on the Hill in D.C.

 

It’s nice to have celebrations like these take up my waiting, waiting, waiting...

 

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