Friday, June 8, 2012

The investigation



My cancer journey began nine months ago when I decided that despite a previous doctor's dismissal, the persistent lump in my neck was not just a swollen lymph node. Since then, I've traveled down this path alternately fearful, uncertain, brave,  curious, angry, in pain, nauseous, grateful and--over the past month--investigational. This last term was a gift from my insurance company, intended to describe the treatment my doctors prescribed rather than me directly. But throughout my battle with Anthem, it has permeated my experience. My tumor was very rare, and it had a tiny, tiny chance of being malignant. When the pathology report came back and I had to make some tough decisions, I realized that statistics were not going to save me. Anthem, however, did not want to pay for anything not backed by solid statistics. Refusing to fall through their cracks, I turned the term "investigational" back on them and asked: "What isn't investigational for my condition?"

Now that I've won my fight with Anthem, I realize that an investigational spirit is one of my best weapons in both my fight for insurance coverage and my fight against cancer.

I'll be in Houston for the next eight weeks, mostly alone with my disease--and my computer. I intend to spend this time not only eating well and making jokes with the technicians as they zap me. Mostly I'm treating it as a chance to explore what brought me here and where to go next. I'll be searching medical journals and news articles, reading other blogs, and reaching out to fellow students who have learned similar lessons. Here are the questions I'm starting with:
  • How rare is my condition, and how have other people in my shoes dealt with it?
  • What defines a rare condition in the medical community, and how do the best doctors come up with good treatment plans? How is good research done despite small sample sizes?
  • How rare are rare conditions? How are they treated by the insurance industry--and why?
  • What makes student insurance different from other insurance types? Who is available to support us?

Stay tuned, and keep in touch!

8 comments:

  1. Isabel, what an amazing story - your determination is remarkable! You have given me hope and inspiration to never give up.

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  2. Hi Isabel,you are an incredible fighter! We would love to share your blog on the Carcinoid Cancer Foundation website, in our Survivor Stories section (http://www.carcinoid.org/content/survivor-stories). Our Foundation is dedicated to bringing about greater awareness and education of carcinoid and related neuroendocrine tumors. The hope that you would bring to other neuroendocrine cancer survivors would be enormous and the information that you will be sharing in your blog could well change the lives of others in similar situations. Please contact us at carcinoid@carcinoid.org. Many thanks, Grace Goldstein, Carcinoid Cancer Foundation

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  3. I am so proud of you, Isabel!
    love, Laurie Loving

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  4. I'm so happy that you persevered and succeeded, Isabel. Chasing support for your petition, we wrote nearly everyone in our address book. By the way, Tracy Kidder's other nf works are right up there with HOUSE, except perhaps the recent memoir of his military service.

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  5. Isabel, Thank you for pushing and succeeding in getting coverage for what qualifies as
    good medical care. I was a pediatrician for Northern California Kaiser- Permanente Medical
    Group for twenty eight years, and even in the old days, I sent patients to Seattle for bone
    marrow transplants and Los Angelas for a special rectal pull-through surgery done only
    there, with no strenuous objections from the brass, and costing far more than your therapy.
    I am, of course, for universal healthcare, such as Medicare for all with ability to bargain drug
    and generic prices, local or foreign, single payer option. I spent a number of years in Germany,
    and medical delivery there is far better than here. So is veterinary medicine. We must catch
    up. I shall follow your blogs faithfully.

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  6. "Fairy tales do not tell children that dragons exist. Children already know that dragons exist. Fairy tales tell children that dragons can be killed." - G. K. Chesterton

    The best medicine is that you took control...therefore you chose not to be the victim. Your courage will keep you strong.

    My Tonsil Cancer diagnosis in 2008 required chemo and 7 weeks of daily radiation to the neck with the S & M mask. I watched my daughter graduate from 8th grade yesterday and worked 10 hours in the garden today. Every day is a gift.

    I too started a blog the day I was diagnosed and it became a significant part of my mental therapy. Be strong.

    Dragons can be slain.

    rlw

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  7. Hi Isabel,
    I just penned an important message to you via Facebook, as I don't have a regular email address for you. We are not connected as FB friends but you should receive the note. I hope you are having a good day.
    Sincerely,
    Jim Deaton

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  8. My first appoint at M D Anderson was on 5/25/12 for prostrate cancer see if I was a Candidate for PBT had to wait for pre approval from Highmark BCBS of Pa. got the call on the 9th of June that Proton Beam therapy was approved. half way through PBT the wife called 7/9/12 said all of the claims had been denied. My last phone call with BCBS said I would have to file a appeal. I'm waiting on a Ms H too hope it the same one

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