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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13 Responses to “Deciding Not To Know”

  1. Brian & Chris November 12, 2011 at 4:50 pm #

    Congratulations Jenna on the continued good health. Also the new puppy!! We have a beagle named Otis who is my fifth child! Keep up the good work campaigning for cancer. We are helping locally with the NUMC new cancer center. We worked for fundraising and Brian has been the “mascot” for advertising in the SE paper and NU Journal. My aunt just passed away from acute leukemia 2 days ago. They gave her 2 weeks to 2 months to live. She got 9 days….We need to keep up the good fight!!! Best wishes and good health to you!!!! Brian and Chris

    • Fran Albright November 12, 2011 at 6:02 pm #

      Jenna: looking good: but I was worried when the Journal said you and your Mom were in rochester, so now I know.
      Between a rock and a hard place, decisions, decision, Your blog was just what I needed today, as it’s resu;rring for me.
      Wow!! I love dogs, looks like Lucy will be a good size. Probably easier than a nother beagle. Hi to Jimmy from me.

      • Jenna Langer November 14, 2011 at 4:45 pm #

        Hi Fran – Yes, The Journal article was wildly confusing… you’ve got the story right. Hopefully I see you over Thanksgiving!

    • Jenna Langer November 14, 2011 at 4:44 pm #

      So sorry to hear about your aunt, but thanks for all the great work you’re doing for the new Cancer Center! That’s a place that’s definitely near and dear to me.

  2. K. Gerard Ludewig November 12, 2011 at 11:42 pm #

    This post reminded me of an article I read a while ago about prostate cancer screening in men.

    This paragraph, in particular, grabbed my attention. ”

    “The most frequent treatment then, as it is now, was the surgical removal of the entire prostate gland. The prostate sits at the base of the penis, wrapped around the urethra, which is the tube that carries urine and semen out of the penis. Trying to separate gland from urethra is a difficult job, and even the best of surgeons can damage the urethra or the bundle of nerves that initiate erections. About half of men who undergo radiation or surgery will have permanent side effects like impotence and incontinence. Up to 1 in 200 men die within 30 days from complications related to the surgery.”

    Yeah, I might take my chances.

    • Jenna Langer November 14, 2011 at 4:46 pm #

      I think the procedure sounds like it could make a fine Tuesday afternoon. But yes, that’s definitely the gist.

  3. Katie Prochniak November 14, 2011 at 9:52 am #

    Jenna it is so great to see such a young person out there trying to put light on the struggles and giving cancer patients a voice. Keep up the great work!

  4. roozie assadi November 15, 2011 at 12:26 am #

    Your confidence is reassuring. Its nice to see the image of a cancer patient not miserable ya know. It feels good to tell people about it doens’t it? And it isn’t bragging when its the truth right haha. You are strong and your immune system is amazing, as are you. Its nice to hear from a fellow cancer patient, and from a survivor to a soon to be survivor, keep up the good fight!

    -Roozie Assadi

    • Jenna Langer November 16, 2011 at 10:16 am #

      Roozie, it’s so good to hear from you! I’ve been wanting to meet you ever since I met Raha. You’ve got a great sister. Thanks so much for what you said – you too keep up the good fight!

      • Roozie Assadi March 4, 2013 at 1:08 am #

        Hi again, I was just writing another paper on my story and I read, along with some other stuff, to get some inspiration. I was wondering if I could get your email. If you had some time I would love to actually meet you 🙂

        • Jenna Langer March 4, 2013 at 10:00 pm #

          Thanks for getting in touch! My email address is Would love to meet you too – I’ve heard great things from Raha. Only problem is that I’m in Chicago now and not often Minneapolis. We’ll make it work though – send me an email.

  5. roozie assadi November 15, 2011 at 12:27 am #

    oh and i almost forgot, your dog is adorable! haha

  6. Kirsten November 16, 2011 at 1:37 pm #

    Omg! 6 months!! YAY!! Way to go Jenna!!

    ALSO, cutest puppy ever! She looks so sweet.

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