[cancer] Walking through another portal in the hallway to death’s door

Underwent my bimonthly CT scan yesterday. My oncologist forwarded me the radiology report a few hours later.

Not good.

Not instantly, deathly terrible, but not good.

Their comments, lightly edited for clarity and privacy:

There has been a small amount of growth in the lesions in the lungs and liver, no new lesions though. We can discuss the options, either continue on therapy thinking that the disease is growing more slowly than if off therapy, or look at Phase I options with [the oncologist coordinating trials]. Since the waiting list for Phase I is an issue, we can continue until something opens up.

What this means is that the Regorafenib is losing its effectiveness. The drug has not flatly failed me yet, but the excellent results we’ve been seeing have begun to reverse themselves. That trendline will not turn back around, that isn’t how cancer drugs work. We have to decide whether and how long we want to gamble on partial effectiveness, versus moving aggressively into clinical trials.

In effect, we’re back to where we were in June and July with my life expectancy being 6 to 9 months. The Regorafenib managed to stop that clock for a while, but the clock has re-started. If we’re very, very lucky, we may find a trial that can stop that clock again. Lisa Costello and I see my oncologist on Monday to review our options.

At the moment, I am very upset and pessimistic. It didn’t help that yesterday included the stress of the scan itself, wrangling with legal and disability issues, and a $4,000 bill for legal services in the mail.

This is another irreversible step on the rough path to my own personal extinction. Death has come another leap closer, and I can smell the gravedust on his breath.

I hate this.

8 thoughts on “[cancer] Walking through another portal in the hallway to death’s door

  1. Cora says:

    I’m very sorry to hear this, Jay.

  2. homa_bird says:

    Enjoyed your panel last night, was very helpful for me. Sorry you had a crush of a day, amazing you can carry on with such high energy, fast-paced info sharing and good will!

    Not being quick on the draw, I finally (after sleeping on it) integrated the most important part (for me in dealing with a family member with cancer) of what you had to say: which is; “I am angry”.

    That is what I came to hear, I see now. So simple. My daughter is angry as well, terribly terribly angry, and her anger most often is directed at me, because I am there? Who knows, because I will never ever stop loving her, I suspect.

    Never, of course does she direct anything but pure love towards her beautiful child, but at me, yes, full throttle anger. It’s been bewildering and devastating. And instead of accepting this, I’ve tried to continually make it better, or talk her out of that emotion, or, most inappropriately, strike back when she has been particularly hurtful. Wrong.

    Last night, I could hear you say it, and just. Accept it. Finally. Anger. It is there, it is appropriate, it is what it is.

    We can witness, listen, empathize, be there for support, but to try to deny someone with cancer (or someone whose young child has cancer) such a core emotion, no matter how awkward and painful it might be for those around them…well, I learned something important last night.

    It was just good to hear you name that emotion in such a straightforward way.

    Thanks…much love!

    1. Jay says:

      So good to meet you. I hope we get another chance to pass some time.

  3. Sarena says:

    You don’t know me, but I found your blog through a friend on facebook. Your post hits close to home for me as last year I was diagnosed with stage III ovarian cancer at 32 years old. I dealt a lot with dying young and coming to terms with it and it is never easy. I hope that blogging has brought you a space to vent your feelings. I found that it was really one of my only options to be able to discuss my feelings in an open way. I couldn’t talk to most of the people around me because they just didn’t understand and were scared to talk about death with me. So many people couldn’t handle it. It can feel so isolating. I live knowing that my life has an expiration date sooner than everyone elses. Oddly enough though, I have been able to find peace in it. But I can relate to you feeling pessimistic. I did too last year. And the treatments were so terrible they sometimes made me want to die. But it has gotten better. I hope it gets better for you too. If you’d ever like to talk to a fellow cancer fighter, my door is always open. Namaste 🙂

  4. Adrianne says:

    I’m so sorry that you have cancer, and I wish you the best in finding a cure. I want to thank you for publishing your thoughts as you move through this illness. Your comments on what helps and what doesn’t have been very helpful as I deal with friends and family with end of life issues.

  5. Ben Fenwick says:

    If you can smell its breath, whack it in the face. I know what they say…it won’t do any good, but everything you write is a “whack”, I bet.

  6. Phil says:

    I have been following you since your first cancer post, (already an SF reader of your books) have to say what an honour and a privilege it has been following your story of such intimacy, life and potential death.

    I doubt many writers have engaged an audience in such a way as you have.

    I have laughed and cried at your honesty and openness, today all I can do is send an anonymous hug

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