[cancer] Who wants to live forever?

Who wants to live forever? Not me, apparently.

I’ll make a more detailed post tomorrow, but the short form version is that I have a large mass in my peritoneum, two inches or more in size, along with another somewhat smaller mass. These are more omental tumors. Multiple masses of various sizes spread throughout my liver, some of them confirmed tumors, some of them suspected. Also two spots in my right lung which are suspected tumors. Tumors this widespread are not subject to surgical treatment. Not to mention which my liver is too fragile for further surgery in any case.

We are starting me on Regorafenib later this month. The hoped for outcome of this treatment is six to twelve months of life extension through arresting tumor growth and further development. If the Regorafenib is ineffective, or when its efficacy drops off, I can expect about three months of decent quality of life, followed by six to nine months of decline, ending in death. In the mean time, of course, I will have to tolerate the rather substantial side effects of the drug.

In other words, I will most likely die within nine to twenty-four months from now, depending on Regorafenib’s effectiveness. I will never again be out of treatment or free of cancer.

This is my terminal diagnosis. We will continue to push as much as possible for further treatment and life extension, but I’m on the last plane out. Just remains to be seen how long the flight is.

187 thoughts on “[cancer] Who wants to live forever?

  1. pelican says:

    I’m so sorry this is the news. Thank you, again and always, for sharing your experience so frequently and forthrightly.

    Fuck cancer.

  2. Laurie Mann says:

    For good information on issues around palliative care, there are many online resources. I’ve found Pallimed especially useful. http://www.pallimed.org/

    1. Jay says:

      Thank you, Laurie.

  3. Leslie says:

    I’ve not commented before although I’ve been reading for quite a while. I’m so sorry . You write so eloquently and coherently about your experiences – it’s a real generosity of spirit to share this road with us all.

  4. I am so very sorry, Jay.

  5. Please NEGU. I want your story to go longer than you think because you were already making an impression in the Kickstarter fight. What ever you do puts a real face on the tremendous fight to live well, even if you are dying. If it gets too hard, remember you have already accomplished much toward your lasting legacy.

  6. Terry Karney says:

    Sympathy. Sorrow. Condolence. Lack of real words.

  7. Gayle says:

    I’ve been following your journey and have been amazed at your openness and grace. Gentle hugs …

  8. Ruthie says:

    I’m sorry. I imagine Angels beating back your cancer with divine hammers, slowing it down, so you can live every minute as long as possible, with lots of LOVE.

  9. Kathy says:

    I’m so sorry, Jay.

  10. Brenda says:

    I am so sorry. Those sound like empty words, I know, but I truly am sorry. My thoughts are with you and The Child.

  11. Eva Whitley says:

    Nothing I can say that hasn’t already been said here, but I want to give you a virtual squeeze/hug, futile as it is. And my fingers crossed that you receive an unexplainable reprieve for about 40 years or so.

  12. Eva Whitley says:

    If it would help your daughter to talk to a teen who lost his dad, I offer the conversation skills of my son, Steven.

    1. Jay says:

      Thank you for that offer, btw.

  13. Jay, I’m so sorry.

  14. Dennis Hughes says:

    My mother had breast cancer that metastasized to her liver. When it was first discovered it was the size of a cinderblock and they gave her 1,000 to 1 odds to make it six months. She lasted five years, got to meet her grandchildren, and lived a very good long time after. I am not saying what will happen for you, but I would love to think you had hope for something better than your immediate prognosis. Hope makes a lot of difference in how things go, and I have lots and lots of hope for you.

    May all of your days be wonderful, and may all of your wonders be long.

    I hope your days are better.

    -Dennis Hughes

  15. Cat Rambo says:

    Well, fuck. I am so sad to hear this. Words fail me. 🙁 All the best from Wayne and I.

  16. LaShawn says:

    Hi Jay,

    You never met me, but I’m one of your anthology mates from Dark Faith: Invocations. (I’m the one who wrote the story poem) I read your story there and have been following you since. I don’t know what to say, but I deeply, deeply appreciate your words and your honesty. Thank you for that, and I’m so sorry you have to go through this.

  17. Dorothy Cordochorea says:

    Jay, what can I say? Nothing but silent sorrow and honoring, and a heartfelt “Thank you!” make any sense. I have lost so many loved ones to cancer – I hate it. What you are sharing will help others. Thank you. (Silent honoring…)

  18. Josh Mint says:

    Hi, there is hope, a lots of it. Please check out MMS, my friends father received a full recovery of cancer. Take care!

  19. Glynis Smy says:

    Having followed on the edge, and been inspired by your courage, I now want to wish you rainbows in your clouds. x

  20. Colleen Cahill says:

    Jay,
    my heart goes out to you. From the Polyphony to zepplins to clockwork adventures, you have taken me to some wondrous places. I will always think of you when I re-read these books. Prayers for you!
    Colleen

  21. Raj Potula says:

    Hi Jay,

    I am very sorry to hear this news. I know what a pain Cancer is…to you and to the ones who love you. I lost my wife (who was just 38 yrs) last year to cancer. I live now only for my daughter. What else can one do?

    Have you tried DC therapy? (Dendritic Cell) It’s immunotherapy based and doesn’t harm your body but boosts your immune system which kills cancer. I am sure your doctors must have thought about this…but if they didn’t, you might give it a shot. They are using this more and more now. Just Google it. http://www.dendriticcellresearch.com/

    Also, I would recommend you read this: “Journey of the Soul” by Michael Newton. This book really helps. I am just starting out as a sci-fi short story writer 🙂

    All the best,

    Regards,
    Raaj

  22. Cora says:

    Oh, Jay, I’m awfully sorry to hear this. I also wanted to thank you for being so open about your experiences. You openness about this has helped so many people, including some you’ve never met. Anyway, hugs and fuck cancer.

  23. Emily Thompson says:

    I’m sorry to hear of your situation. My mother suffered from several (in the end fatal) occurences of cancer. By the time it was over, she was glad to be done with it.
    Interestingly enough, the VA has a symbol for atheist grave markers. Actually, there appear to be several potentially acceptable symbols as I scan the list …. http://www.cem.va.gov/hmm/emblems.asp
    Of course, you could talk to a Unitarian Universalist minister. I had a friend who was one once – I would still count him a friend, but he was a generation older, and he has gone the way of all flesh. It’s my understanding that the UUs welcome atheists.
    No, I am not an atheist personally. But I won’t bother you with that.

  24. Elaine Isaak says:

    Dear Jay,
    We were all hoping for the right magic or medicine to keep you with us, and I’m sorry to hear this news. Your legacy of brilliant work, enthusiastic support of others, and investment in our community will never be forgotten.

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