Archive | November, 2011

Chutes 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 “chute” 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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Deciding Not To Know

12 Nov

Today marks my Six Months milestone. By now my immune system is so hearty that I’m practically licking bar tables and cleaning my brother’s room. Well, almost. 

In the run-up I’ve been actively lobbying Be The Match to change their “Life After Transplant” materials to reflect that transplant patients should not be expected to clean the bathroom once we reach Six Months. Nonsense.

Six Months also brought an uncomfortable conversation with Nurse Practitioner Julia: Should we do a six-month bone marrow biopsy? Protocols differ from doctor to doctor and individual disease to individual disease. That wiggle room can leave some patients squeamish. It’s a conversation that pervades a lot of the cancer talk these days: Is it ever better not to know?

It’s not Mayo protocol to do a six month biopsy, but because my counts blipped early on, Julia posed the biopsy question to my team of pediatric oncologists. One of my doctors felt I should go through with the old needle in the hip, some were in the middle, but another asked the piercing question: “What would we do with negative results?”

Good point. What would we do with negative results? There’s not much we could do. The research hasn’t come far enough to resurrect a failing bone marrow transplant.

Flat-lined cancer research funding is an issue I’ve taken up with the American Cancer Society Cancer Action Network. Earlier this week I spoke at an American Cancer Society / Mayo Clinic Roundtable with Rep. Tim Walz, who represents my district in Minnesota.

MN Rep. Tim Walz and me at the ACS / Mayo Clinic Roundtable

Secondary MDS is a little-understood and under-researched effect of all the toxins and laser beams that treated my primary cancer seven years ago. Doctors still don’t know why a small posse of patients develop treatment-induced malignancies and others don’t. I’m enrolled in two NIH-funded, Minnesota-led studies that are trying to answer that question so that future cancer patients can side-step the sequel.

The world of cancer research is complicated. When doctors first started researching a cure for cancer, they thought they were dealing with a Cure for Cancer – one big disease that would take one cure-all. After decades of research in this vein, they’re realizing that cancer is an extended family of diseases, not only different from type to type, but from person to person.

This fracturing in how researchers now must search for treatments has affected the volume and pace at which new treatments are brought to the bedside. It used to be very lucrative for pharmaceutical companies to invest in oodles of research, but now – when we know that millions of people don’t have the same type of leukemia, but rather thousands of people have dozens of individual kinds of leukemia – the lack of widespread financial incentive makes them hesitant. As a result, research is increasingly left up to academia (places like the University of Minnesota and Mayo Clinic), and funded by the National Institutes of Health (NIH), an agency of the federal government. This brings good money and good jobs to local communities. For instance, NIH funded $475 million in Minnesota last year, resulting in more than 10,000 jobs.

There’s no shortage of ideas for new treatments. But today only 10-15% of research proposals to NIH get funded – that’s down from 20% a few years ago. That means lifesaving drugs could be waiting, tucked away in Times New Roman on the pages of a never-funded proposal.

I have benefitted tremendously from cancer research. My disobedient osteosarcoma was cured by letting my doctors get creative. Seven years later, my doctors had 10 genetic identifiers to qualify my perfect bone marrow match. I never got graft-versus-host-disease because of cancer research. My doctors caught two viruses before they exploded into would-be debilitating symptoms because of cancer research. But looking ahead, I can’t help but see the gaps.

So far my blood DNA has been 100% my donor’s pedigree. But if that number recedes even a few percentage points, my pedigree of aggressive cancer will almost certainly find a way back into my marrow. The logical thinking is, wouldn’t we want to know if this ratio teeters so that we can do something about it?

Yes… but only if there is something we can do about it.

Our only option would be to go back to my bountiful donor and ask for white blood cells. When transfused they may act as reinforcements and fight my comeback cancer. But they probably wouldn’t. This treatment has only been shown to work on occasion in AML cases. And it’s not without serious risk, namely the dreaded graft-versus-host-disease.

Moreover, not only could a biopsy catch my marrow on a bad day and reveal an unrepresentative drop, but it also could produce a false positive, telling me “all clear” when in fact my marrow is on the brink of giving in.

Every cancer survivor has been taught to fight with gusto, fight with might, fight, fight, fight.  

But, I think, sometimes it’s okay not to go looking for fights. Sometimes maybe it’s best not to know.

And let me brag – my immune system and recovering marrow have shown ravishing results thus far. Maybe there’s no reason to go looking for trouble if there are no signs of smoke. But it’s hard.

Ultimately we decided on the middleground. In December we’ll do a chimerism, a fancy blood test that I won’t even pretend to understand. Basically it will warn us of any red flags, but it won’t look too deeply for trouble it can’t fix.

In other news, we have a new family puppy! She’s quite the rambunctious replacement to our old beloved beagle Kirby, who died while I was in the hospital.

Everyone, meet Lucy!  

Lucy and Me

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