finding a plan B

The crisis seems to have passed. But because I am not cured, will likely never be cured, I need a plan B, always a plan B. The cancer is laying dormant in my liver but is still somehow creeping around my bones, soft tissue, and lymph nodes, somehow a little resistant to treatment.

Predictably, each of my now four doctors have different opinions on a plan B that span the spectrum.

Oncologist 1 has scheduled scans to assess the cancer in my bones. He has referred me to a radiation oncologist. He is ready to start making my hair fall out with hardcore chemo drugs. He is worried and cautious and he thinks my treatment in Germany is not working.

Oncologist 2 wants me to drive to the next closest neuroendocrine expert and seek a what now must be a fifth opinion. He isn’t happy with how the treatment is working.

Oncologist 3 envisions a future for me traveling to Germany for treatment at least once per year for as long as I live, provided my bone marrow and kidneys are up to the assault. He doesn’t think there is any other treatment for me–or anyone–but PRRT. In Germany. Forever.

Oncologist 4 is all sunshine and rainbows. He smiles, pats me on the shoulder, pulls out his best talking-to-a-28-year-old-voice, and says, “You look completely healthy. You don’t look sick. Your body will return to 100 percent soon. Germany is working–I promise. Be patient”

My parents want me to get Oncologist 5 involved. They ask what I think.

I am thinking about my new apartment in the afternoon, yellow sunlight streaming through the windows, reflecting off the freshly painted walls, the new carpet. I am there, sitting at my future new desk with a mug of white coconut creme tea and a croissant, happily writing an article for my new job or a blog post or a chapter of my eventual book.

No… now i’m thinking about my next months being spent in fluorescent hospital rooms, windowless waiting rooms and exam rooms, shut up in cars and airplanes breathing stagnant air. Weeks spent away from my sunny new apartment, my soft new comforter.

I just got my life back, damnit. I’m over it. I’m over having cancer; not one but three weird chronic/recurring conditions that no doctor can quite explain or treat.

I’m done. I don’t want a plan B. Leave me alone. Let me live.

Wait.

I’m not that brazen. I’m not that brave. I’m scared of a spot popping up in my brain. I’m scared of bone pain. I don’t want to again reach the lows I reached last year. I don’t want to be caught without a plan B.

 

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5 Responses to finding a plan B

  1. Matt says:

    I think knowledge is power so while I don’t wish you more time spent with Doctors, I think Oncologist #5 is worth the trip!

    I think your apartment with yellow sunlight streaming in & reflecting off your freshly painted walls while you sit at your desk writing should now be labeled A1.

    I really like this image, Lindsey! Perhaps the light is symbolic of love & healing.

    It certainly is a very comfortable place to imagine!

    Definitely A1!!

    Plan B does not have to be written in concrete.

    It is like a life ring that is available should the ship start to take on water, list & be in danger of sinking.

    Have you seen that movie “Crazy Sexy Cancer” by Kris Carr?

    Just maybe Plan B has to be a Quantum Shift of thinking & perception.

    Something to think about.

    And now for a Positive affirmation by Louise Hay!

    -I release any need for struggle & suffering.

    -I deserve all that is good.

    -I am divinely protected.

    -So I have spoken…so it shall be!

    Breathe, Lindsey…Breathe.

  2. thandilocks says:

    Wow. No words. This is a terrible place to be in. No agreement between professionals, things creeping about your defenseless body…Hoping for some clarity and hope…

  3. Cathy Stollen Cohen says:

    Lindsey…the picture of you in the apt warms my spirit as it does yours. In this tempest of uncertainty thank goodness there is a glimmer of light and love in your life. Something to hold onto as you navigate Plan B….always in my prayers.
    Hugs and blessings to you…Cathy

  4. Shanna says:

    Hi Lindsay,

    I just want to tell you I love you. It sounds weird but it is the love of someone with a sister (36) with nearly the identical experience. February 7 will be the 3 year date of her continuing and exhausting fight with a stupid, boring, monstrous PNET and all it’s little pals that love her liver (and some lymph nodes now).

    I read your entire blog. You are one of the very few people in the world with so similar an experience to ours. I just felt unconditional love and understanding when I first read your blog. I just want you to know whatever you write and however you feel about your cancer is perfect the way it is, when you try to apologize in any way on a post, I just won’t have it! I am always saying “Of course Lindsay, of course you feel that way.”

    Thanks,
    Shanna

  5. AshMac says:

    My vote: Onco 2

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