[cancer] I have seen the future, brother, and it is murder

calendula_witch and I had the post-chemo oncology followup appointment this morning. Everything was running late, as happens, but finally when the oncologist (and the resident) came in, they did not look happy. My oncologist reported that Friday’s CT scan was “very surprising.”

While on the FOLFOX/Avastin chemotherapy regime, my body managed to develop a new metastasis, specifically a 2.9 x 2.4 cm lesion in the left lobe of my liver. That’s a tumor the size of a large olive in less than eight months, growing in the face of assault by some of the nastier drugs in our pharmakon.

Next step is a PET scan tomorrow. I always do enjoy a visit to the Department of Giant Radioactive Spiders, and any medicine that comes in a lead-lined box and a tungsten-jacketed syringe has got to be good for me, right?

After that I’ll have a pre-operative consultation with the liver surgeon my oncologist thinks is the best in the area. About four to six weeks from now, I’ll have the tumor removed. That surgery will happen in late August or early September.

Unless something very unexpectedly arises from the post-operative pathology, about four weeks after that, I’ll start six months of a new chemotherapy regime, FOLFIRI. That’s a similar mix to what I just finished up with, except instead of Oxaliplatin, the cocktail will include Irinotecan. This will be tougher, more severe chemo, because clearly the cancer cells in my body laugh at danger and sneer at medical intervention. I’m told Irinotecan doesn’t cause the peripheral neuropathy problems that Oxaliplatin does, but that I can expect more severe lower GI distress and greater hair loss.

Oh, boy, an intensification of my toilet-based lifestyle! On the plus side, the damned peripheral neuropathy can taper off over time without intensifying. And I already have this convenient chest port.

Open issues right now include the timing of the surgery. If I went with the oncologist’s timeline, I’d have to cancel the trip calendula_witch and I are making to New Zealand and Australia. Which may need to happen depending on medical necessity and their sense of urgency. Obviously this tumor is aggressive, to have developed under such adverse circumstances.

Likewise, I have to do some time management at work. I’ve already burned all my sick hours for the year on chemo this spring, so I may need to cancel the trip simply to accumulate sufficient paid days off for this fall’s chemo. We do have a Short Term Disability benefit at work, which I’m going to investigate the possibility of taking. That will also allow to me to work a bit less through the later stages of the chemo cycle, which is probably wise given how tough the last one was. I have to talk to HR anyway about FMLA paperwork and such like. That process will start tomorrow, after the PET scan.

Financial impact will be pretty meaningful, too. My direct out-of-pocket through my insurance company is $4,000 per plan year. I’ve already burned through that, so at least the 20% hospital co-pay for the surgery won’t hit my wallet. But the second half of chemo will be in the next plan year, so there’s a decent chunk of change. My indirect costs are another $6,000 a year or so, meaning, money I wouldn’t be spending if I didn’t have cancer; that extends into 2011 now. This isn’t killing me financially, but it’s stretching me pretty thin.

Another thing I’m thinking hard about is long-term health and survival. Having a second met so hard on top of the last one certainly affects my mortality statistics in a meaningfully adverse way. (Translation: “ZOMG, I’m going to die!”) I continue to see this cancer as treatable and survivable, but damn is it aggressive. Not to mention I will wind up spending 12 out of 15 months on chemo. This is serious damage to my quality of life, and a challenge to mid- and long-term planning.

It’s also screwing up my writing schedule something awful. I will make revised deadline on Endurance, and I will make deadline on Kalimpura, but as a result of these two chemo series, Sunspin has been pushed back an entire year from my original work plan, and my incidental output of short fiction has been crimped. This is already having further negative financial and career visibility impact on me now, which will only deepen with a new, tougher round of this nonsense.

I’m pretty unhappy about not being able to get back to normal. Just about the time I expect my energy to return to something like its pre-chemo state, I’ll be back into another round of surgery and chemotherapy. Basically, this means I’ll go about 16 months without much of my real life. And that assumes I come out of the other end of this cycle without yet a further disaster.

Finally, and most importantly, the_child is taking this very hard. I won’t say more, for the sake of her privacy, but that is breaking my heart. The effect on my family as a whole is pretty depressing, but she most of all.

All three of my cancer experiences have been surprising in various ways. The original diagnosis came when I was over twenty years younger than average for this cancer. The first metastasis wasn’t supposed to happen, given the staging and general circumstances of my primary cancer. The second metastasis quite visibly shocked my oncologist. I’m the opposite of a medical miracle.

Emotionally, I have barely begun to process this, any more than the people around me have. I’m angry, devastated, depressed, frustrated, frightened. You name it. The assassin in my gut has come back for another try, with a vengeance.

I will fight, because there is nothing else to do, but damn am I tired of this.

31 thoughts on “[cancer] I have seen the future, brother, and it is murder

  1. {{{{{{{{{{JL}}}}}}}}}}

  2. $)(:;#%{|
    Oh, man,
    hugs. tons of ’em.
    There is no justice.

  3. Alyx Dellamonica says:

    Son of a bitch, Jay. I am so sorry to hear this.

  4. Fuck, and fuck cancer. TANJ indeed.

  5. Hank Graham says:

    I kinda expect life to be unfair. But it really sucks that it’s being THIS damned unfair. All my best, and if there’s anything you need I can give, let me know.

  6. Mpomy says:

    I don’t even know where to begin. Emily and I are thinking of you and your family tonight and in the months to come. I don’t understand any of this evil. I just know that I hate it so much.

  7. Jesus. No words to say right now. *Hugs*

  8. Fight. Fight fight fight. There is no reason to falter or give in. Cancer frequently shocks the oncologist, I find. It is a life-eater; choke it on your durability and tenacity.

  9. Debbie says:

    Jay, I’m so sorry. Wishing you strength for the next round–

  10. Sydney says:

    Much sadness for this news, but sending love and best wishes your way.

  11. Yasmine says:

    Hugs, my friend. Fight the good fight–sometimes life gives you a win. I will be thinking about you.


  12. Andy Taylor says:

    So sorry to hear this latest turn of events.

    My thoughts are with you and your family.

  13. Sän says:

    Hugs, both the Internet kind, and more coming this weekend.

  14. Alan Lickiss says:

    Jay, so sorry to hear this news. I’ll be praying for you and thinking good thoughts.

  15. Anima says:

    I’m really sorry to read this news. My father has just started his own fight against cancer, and I’m beginning to see what a frustrating and draining process it is. To have another setback like yours today is just jaw-grinding, but I’m glad you still have that fighting spirit.

    Thank you for blogging your battle. I’m hoping some of your entries which I’m sharing with Dad will help him acquire your f**k-cancer attitude.

  16. ces says:

    My husband’s mother had “multiple myeloma” cancer. The doctors told her that at her age (i.e., the age at which they discovered it) she was too old for a bone marrow transplant to help, so she had chemotherapy & radiation. It prolonged her life for a year, but eventually it went to her brain, and that was the end. She spent the last 3 months of her life in the hospital doped up on morphine (and probably other pain stuff) coming from an IV whose drip she controlled. When she died, it had been about 2 years since they found it. Her youngest child (a late-in-life baby at the time he was born, but welcomed nonetheless) was still a teenager. Even though he was old anough to understand what was going on, he took it very hard and is still very sensitive to any mention of her.

    When asked once why she was doing the chemo when the prognosis was “soon,” she said (and here I’m paraphrasing) – “Well, what can you do? Either fight it or give up and die sooner.”

    We don’t want you to give up and die sooner, so we are all SO VERY GLAD you are fighting it! My husband’s family made more-than-frequent use of their church pastor – if you can find a way to finance it, it might be a good idea for you to have “the_child” see a counselor or therapist.

    FIGHT, FIGHT, FIGHT it as long as you can!

  17. Ahsavka says:

    Terrible news handled and re-delivered to your readers with total grace. I’m so sorry to hear this, and I am humbled by your strength.

    Anything we can do for you – maybe more importantly, for your kiddo – just shout that out to the internet if it occurs to you. If not, that’s ok too, we are patient. Good luck.

  18. Jan says:

    First of all I want to say that this F*#@ing sucks.

    You are such a wonderful person – and to actually take the time and energy to tell us folks what happened today (yes I was thinking of you as were many more people) is beyond giving. You are an amazing person – and YOU will get through this Jay – you will!

    Time to write the ‘Bottles’ book. Give away the cancer to the book. It has to go somewhere and that is the place for it to go.



  19. Jed says:

    Very sorry to hear this.

    Hugs and sympathies.

    And yeah, short-term disability does sound like a good option. Seems like it might let you save the spoons you would otherwise be spending on day job.

  20. [And yes, in addition to reading the above comment that as an interjection, you should feel free to consider it a suggestion and/or prescription.]

  21. Novia says:

    I’ve been following your cancer entries quietly for the past couple of weeks, rooting for you silently, hoping for the best. This post calls for delurking, if only to give you the dubious, if sincerely offered comfort of virtual hugs. I don’t know what else to say, but fight on, fight on, fight the filthy devils. You have a pompom girl cheering you hoarse from Indonesia.

  22. Chris Furst says:

    Be strong and keep on fighting.

  23. Leon says:

    I’m rooting for you and your family. I’m crying a bit here this morning. I never thought life was fair, but . . . fuck man. Sorry.

    I want you to know that, ever since I met you, I’ve been trying to be more like you. I’ve tried to live up to the person you are, and I’ve always fallen short. This has nothing to do with cancer. I just thought you should know.

    You constantly make me realize that I’ve never lived my life hard enough. I promise to try harder, bro.

    You are my hero. Keep fighting.

  24. Fuckin’ cancer. But hey, maybe the third time of therapy/surgery is the charm.

  25. Don’t give up – which I think everyone knows you won’t, but there are a lot of people rooting for you.

  26. I’m sorry.

    This isn’t fair. The reward of serenity is supposed to be more serenity, not more chemotherapy.

    I wish there were more I could do than add my well wishes and hugs to the ones already given.

  27. Krys Taylor says:

    We love you. ’nuff said.

  28. Blake Hutchins says:

    Jesus Christ. I’m sorry to hear this, man. Sitting here with a lump in my throat the size of Australia.

    What Leon said. You’re an amazing, inspiring human being. Keep fighting. Kick the shit out of this fucker.

  29. Jonathan says:

    May you continue to find the courage to deal with this. Fuck a bunch of cancer.

  30. Joe says:

    I’ve done cancer and the encore, but not to the degree you are, bud. Jay, I don’t know you except through your writing, but your words are so beautiful and alive, they made me care not only about the stories, but about the soul behind them.

    You’re in my heart, and my thoughts, and my prayers.

    Love ya, bro. Keep at it, buddy. You can lick this.

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