crazy sexy options

I watched the young-adult-cancer documentary last night and I must admit that I got a little sucked in. As you know, I don’t get easily sucked in by answers for wellness or alternative cures or really by anything that has to do with my health, but Crazy Sexy Cancer got to me. I have been thinking about it all day.

It was written by and is about a young woman who, much like myself,  was diagnosed with an incurable cancer. This young woman, Kris Carr, decides, with the help of her doctor, to not pursue treatment. The documentary is about her search for health–including crazy alternative cures, diets, exercise, spirituality. She settles on a mostly raw/alkaline diet, lots of exercise/yoga and positive thinking. It doesn’t end with a miracle, magical cure, but it ends with her still being alive and stable today, almost a decade after her diagnosis. I appreciate the documentary because it’s real, it includes a healthy skepticism, and it throws information at you but it doesn’t try to tell you what to do.

Nevertheless, I have to keep reminding myself: she is not me. She has cancer in her liver like I do (though a different type that is also in her lungs) but she didn’t have many treatment options and her tumors were so slow growing that her doctor felt comfortable using the “wait and watch” approach, meaning she has not undergone any conventional treatments. I have many, many treatment options, and my tumors are slow growing, but I know my doctor would not feel comfortable doing any waiting and watching (because he always says, “I have some patients who are stable for many years with no treatment. You are not that patient”). I have undergone several conventional treatments (surgery, chemo regimen #1, chemo regimen #2…and now, i’m contemplating a liver transplant).

Let me digress for a moment to talk about the theory behind a liver transplant. I only have cancer in my liver left, so a transplant, in theory, gets rid of all the disease leaving me disease-free. My chemo regimen won’t cure me; the surgeon can’t go in again to take it out and leave behind enough healthy liver; and 0ther therapies designed to specifically target the tumors that are left do not usually do much more than my chemo is already doing (shrinking). My doctors have been alluding to the possibility of a transplant for awhile but I haven’t had to think about it because they were just alluding. As of a couple weeks ago, though, my doctors stopped alluding to it and started to actually talk about it. I have a year or so before it becomes a reality so I have time to think about it and talk about it and get second opinions, but I am starting the evaluation process to get on the list. So I have been thinking about it a lot. But, back to Crazy Sexy Cancer.

We have established: I am not Kris Carr. But maybe I can learn something from her story. Maybe I’m not doing enough quickly enough. She came right out of the gate determined to make changes and to not solely listen to what her conventional doctor says and to not let cancer kill her. She made a documentary and writes books and speaks and completely changed her lifestyle and her diet. She does wheatgrass enemas. She has a story about cancer that people like to hear–she doesn’t give up when the first doctors she sees tell her stupid things, she takes matters into her own hands, and she gets results. Not a cure, but stability. Maybe she would have gotten that even if she had done nothing but… there’s no way to know. And then there’s me. It has taken me a year and two months to decide to finally become vegan–but only on a trial basis. I don’t do wheatgrass enemas. I do my best to exercise. I meditate. I am pretty positive but sometimes negative and I have made peace with being a liver. I asked out a famous actor but didn’t get a response. I feel like a slacker. I mean, in comparison.

I feel like instead of jumping on the liver transplant bandwagon with all of my doctors, I should try to completely change my lifestyle and my diet and exhaust all of my other options first. Shouldn’t a transplant be the last resort? I don’t want a liver transplant. A liver transplant is a big deal. Does anyone want a liver transplant? You can’t undo a liver transplant. Then, I could write a book like Kris Carr and be the girl who almost got a liver transplant but instead completely changed her lifestyle and her diet and she still lives. That story sounds very attractive. I can guarantee my parents don’t like where this is going…

Clearly, my life is not a story. It’s a life. It doesn’t follow any script I try to write for it. My oncologist believes my tumors aren’t the type that will stay stable for a long time. So I would give my lifestyle and diet an overhaul and still have to take chemo. And taking chemo sucks, and it’s like the ultimate poison, and it will probably stop working eventually, in which case I will have to try something else or think about a liver transplant again when I am not quite as young as I am now (but maybe healther? if I stick to my diet and lifestyle overhaul? and do wheatgrass enemas?). There’s no rush but there’s a little bit of a rush because I become ineligible for a transplant if my tumors grow outside my liver and, I imagine, they are more likely to come back in the new liver (always a possibility) if they are actively growing.

Right now, a liver transplant seems like the best option out there so what else can I do?

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13 Responses to crazy sexy options

  1. slockwoodg says:

    You’re not a slacker, you’re doing amazing. Why wheat grass for an enema? I’m sure I could google the answer but I think I’ll pass.

  2. gary says:

    It sounds like you have a good balance going right now in realizing that you aren’t Kris Carr but you can learn from her, just keep reminding yourself that and don’t fall into the trap of comparing what you do to what Kris or others do.
    How long is the wait to receive a liver transplant?

  3. katie says:

    I desperately want to hate Kris Carr (cancer is not sexy, at all, end if story, KRIS!), but found myself reading Crazy Sexy Diet this weekend and now I’m sucked in, too. Like, so sucked in that I spent $60 on just vegetables at the grocery store..

  4. Robert Stack says:

    Thanks for sharing your story. You are facing a brutal choice and it is a tough call. There must be so much to take in — so, take it all in then. Trust yourself to make a choice that you can live with. A good friend told me once I should trust my intuition more often, and he was right.

    It sounds to me like you have some investigating to do. There must be more people who have faced the same situation. What do they say?

    I am not one of them, so I can only guess.

    I wish you success, super cool lady.

  5. Matt says:

    Kris Carr reinvented herself, Lindsey.

    Remember the email?

    Think about it…

  6. Karen says:

    I was wondering if you are eligible for PRRT (peptide receptor radionuclide therapy)? I know it is expensive but I heard it has great results. Just curious what your thoughts are on that..

    Good luck on your journey!

  7. psychevida says:

    So much strength and gentleness to you today! – My partner has an aggressive form of melanoma that has metastasized to his liver and heart… He has chosen not to receive any conventional treatment. Its hard to know what the ‘sexiest’ option is! Good luck in making the choice that is right for you!

  8. Hi Lindsey! If I got to vote (which I don’t, so no pressure on/from me!), I’d probably vote for the liver transplant, but since I don’t know anything about this kind of thing and don’t have all the details of your particular case, I’ll just keep you in my thoughts and prayers.

    It’s hard not to compare yourself/ your situation to other ones that seem similar, but it’s almost impossible not to do it. That said, you are no slacker–never have been. That’s one of the many things I’ve always liked about you. I know you were being tongue-in-cheek about that, but I just had to say it.

    Keep writing! It’s a gift to all of us.

    Hugs,
    Olaina

  9. Abbi says:

    Take the transplant girly. I love Kris’s book and read it while I was going through chemo and radiation. It’s is very motivational and helps you focus on diet. But — it sounds like you have options and doing chemo forever is not a good one. Chemo sucks — and it’s poison ( good poison but still poison). Get on the list, get all the info you can and make sure all your options are open.

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