Back in D.C.

2 Oct

I left D.C. in a nervous, hushed hurry in February when I was diagnosed with MDS. Thankfully my reentry was much more assertive than my departure.

I make a good poster child for the American Cancer Society

At first it felt like I never left. But I soon realized I couldn’t keep up with my old D.C. pace. I was now that girl being brushed past by all the inside-the-beltway in-a-hurry professionals instead of the one who does the brushing by. Also, I didn’t typically have my portrait emblazoned on the National Mall. That’s a new one.

The occasion? The American Cancer Society Cancer Action Network (ACS CAN – the advocacy arm of the American Cancer Society) Leadership Summit & Lobby Day. My doctors weren’t exactly thrilled about the idea of me boarding airplanes and Metro cars with international germs on them (and now as I recover on the couch, I see why), but it was an opportunity I couldn’t pass up.

More than 500 of us swarmed Capitol Hill, meeting with every Senate office and nearly every House office asking legislators to look elsewhere than cancer research and prevention funded by the National Institutes of Health (NIH) and Centers for Disease Prevention and Control (CDC) when they’re looking for places to make budget cuts. And most important to me, we defended the Affordable Care Act (ACA) – the official term for the new healthcare reform law. 

Evidently, I make a pretty good poster child (literally) for the importance of NIH-funded cancer research and was chosen to represent the Midwest (Wisconsin, Minnesota, Iowa and South Dakota). Part of ACS CAN’s new Celebrate with Action campaign is to highlight the “milestones” cancer patients have achieved thanks to cancer research. I wrote more about my Midwest-represent “milestone” in materials used on Capitol Hill:

My Milestone: Because of cancer research, I was able to graduate from college with honors – on time with my peers.

My tumor was a toughie.

A senior in high school, I was unlike all the patients in my pediatric oncology unit at Mayo Clinic because my osteosarcoma was in the middle of my head, taking up my biggest sinus. When the protocol chemotherapies didn’t work, my doctors were left scratching their heads. Typically osteosarcoma is found in the long bones (legs, arms), so an amputation usually does the trick. Well, you can’t really amputate my head. Nor could they completely chisel out the tumor with surgery because there were important things (like my brain) in the way.

This challenge let my doctors get creative. A new kind of radiation treatment at the time – Intensely Modulated Radiation Therapy, or IMRT – hadn’t really been used to treat osteosarcoma before. IMRT allowed my doctors to laser the millions of tiny beams right at my tumor while finessing its way through the web of artery, brain and eye that was in its way.

Since my IMRT and accompanying chemotherapies, my tumor has sat silent, singed in my sinus. My Mayo Clinic doctor later presented his work on my case to the International Society of Pediatric Oncology in Geneva.

I graduated high school with my class and finished chemotherapy two weeks before I left for college at the University of Minnesota. I was the belle of the bald, lugging my books across the Mississippi to class and packing on a needed more-than Freshman 15. 

That I graduated high school and college on time while spending nearly 200 days in the hospital during my senior year was a triumph, especially for my parents. I was so happy I could do it for them – the parents who, cramped on a cot beside my bed, stayed with me those 200 days, and the parents who never gave up on me.

Today I’m fighting myelodysplastic syndrome (MDS) – an under-researched result of the lifesaving chemotherapy and radiation I received in 2004. If my doctors wouldn’t have caught MDS when they did, it would have ripened into an aggressive, acute leukemia. Doctors still don’t know why some cancer survivors develop second and third malignancies like MDS and the thyroid cancer I had in 2008 and others don’t.

Not only was cancer research lifesaving for me in the beginning, but it is on the MDS end, too. Today I’m enrolled in two studies – one led by my doctor at Mayo Clinic to determine why (treatment? genetics? environmental factors?) some pediatric cancer survivors develop additional malignancies. A second National Institutes of Health (NIH)-funded joint-study by the Minnesota Department of Health, Mayo Clinic and University of Minnesota is examining the causes of MDS. Hopefully these studies will mean fewer future patients experience these not-so-fun side effects of treatment. 

Yesterday was my Day 100 – a big milestone post-bone marrow transplant. Growing new bone marrow, blood and an immune system isn’t easy. My doctors knew what high standards to set when choosing my unrelated donor because of a sleuth of research just in the last decade that has increased to 10 the number of factors to consider when matchmaking.

I hope that my milestone in 10 years is almost unnoticeable – that cancer is behind me. And I hope that patients diagnosed with osteosarcoma or MDS 10 years will have another decade’s worth of solid research that informs their successful treatment and reduces their suffering.

Beyond the fluffy cancer stories, the economic impact of NIH-funded cancer research strikes me. This money doesn’t just sit at the NIH in Maryland – it gets distributed via grants to more than 3,000 universities, medical schools and other research institutions in every single state.

In 2010, NIH research produced $68.035 billion in new economic activity in America and created 487,900 jobs – and these are the quality, skilled jobs America needs. Minnesota alone received $105 million in grants to Mayo Clinic and the University of Minnesota from the National Cancer Institute (NCI – the wing of the NIH that deals just with cancer). Last year 10,237 jobs were created in Minnesota alone by NIH investment.

Capitol Hill Luminaria Ceremony

ACS CAN at the Washington Monument

On the Hill at Night

My Minnesota legislators – Sen. Amy Klobuchar, Sen. Al Franken, and Rep. Tim Walz – were not difficult to convince of the importance of NIH research and other cancer issues. In fact, they have championed cancer issues for years. Unfortunately, this isn’t true for all legislators in the Midwest, nor around the country, so we still have work to do. You can help in your own district by joining ACS CAN and making sure your voice is heard.

To leave a comment,just click on “Comments” below this post. It will take you to a new page. Scroll to the bottom where it says “Leave a Reply.” Fill in your name, email address, and your comment in the boxes. When you’re finished, click “Post Comment.” It’s great to hear from you.

14 Responses to “Back in D.C.”

  1. Alaina Lynch October 2, 2011 at 3:30 pm #

    Jenna this is so awesome and inspiring! I am so sad to not be in DC and seeing your face blown up on the National mall. Miss you!

  2. Kelli passalacqua October 2, 2011 at 6:15 pm #

    Nice work, Jenna!

  3. Sharon Deutsch October 2, 2011 at 7:07 pm #

    Pretty cool Jenna! So proud of you and all you’ve done for cancer awareness and research! Glad you could go to D.C. 🙂

  4. erika hanson brown October 2, 2011 at 7:51 pm #

    Love to you,

  5. Clare October 2, 2011 at 8:03 pm #

    Go Jenna! You are doing wonderful things for lots of people who can’t get out there and lobby. It was great having lunch with you and sharing stories. Keep up the good fight and come visit us again soon. Love ya!

  6. Denise October 3, 2011 at 8:52 am #

    Hi! I’m an oncology nurse at Rochester Methodist and am working on my master’s in nursing. For my health policy paper, I’ve decided to take up the cause and write about why we shouldn’t be cutting funding for cancer research. I have all the CAN info and am looking for facts/figures and research (as well as identifying all of the proponents and opponents.) Any help/direction you can offer, I’d appreciate! I’ll email you my contact info.

    In the meantime, YOU GO GIRL!!!! Love your blog and will share it with others. So, so happy you’re making progress:))))))

  7. Robin Guadagnini October 3, 2011 at 11:00 am #

    What an amazing visit back to DC…I think it’s awesome you were able to go back in style and with your face infront of the White House..beautiful and moving picture for the luminaries too!!

    You are a true inspiration, and a true survivor…keep it going girl! So proud of you!

  8. Stephanie Pagan October 3, 2011 at 2:47 pm #

    Hi Jenna,
    Glad to see you were able to make the trip to DC! Come on, admit it, you were annoyed with the people standing on the left side of the escalators ; ) Kidding, of course. I hope you are starting to feel better after your visit here.

    Take care,

  9. Angie October 3, 2011 at 11:53 pm #

    So great to see you and your picture in front of the White House, Jenna! And, good job advocating in Washington 🙂

  10. Jeanne O'Neill October 5, 2011 at 1:04 am #

    Jenna…I had no idea of your history when I met you in DC…I knew when I met you that you were an amazing person…but to hear this now makes me realize it even more…Thank you for everything you have and continue to do advocating for cancer funding…

  11. Ellie Beaver October 6, 2011 at 3:23 pm #

    Great post, Jenna! I am so happy you were able to go to DC. You were the best posterchild by a mile! Way to be a kick-butt advocate!

  12. Pam Schmid October 7, 2011 at 7:57 pm #

    Love you, Jenna! You are an amazing, inspirational, beautiful woman!

  13. Denise October 9, 2011 at 2:27 pm #

    What an amazing adventure you are living! God has plans for you and sometimes he makes it a rough road. However, look at the accomplishments you have conquered and what you are doing for the future.
    I love your photo-you are a beautiful young woman! You are a wonderful writer too. I look forward to reading your book one day.
    Take care-Take it easy in Washington, DC.

    Denise Ludewig


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