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[cancer] I have seen the future, brother, and it is murder - Lakeshore
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Jay Lake
Date: 2010-07-19 18:18
Subject: [cancer] I have seen the future, brother, and it is murder
Security: Public
Tags:books, calendula, cancer, child, endurance, health, kalimpura, personal, sunspin, work, writing
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.

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User: neadods
Date: 2010-07-20 01:29 (UTC)
Subject: (no subject)
Damn! I'm so sorry.
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User: (Anonymous)
Date: 2010-07-20 14:27 (UTC)
Subject: Thanks
Thanks for sharing Jay. I can't imagine that I would show as much thoughtfulness and grace in sharing your experience, if I was in your shoes.

Cheers to you my friend,
--Jeff Narucki
@jeffn516 on twitter
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wyld_dandelyon: Cookies
User: wyld_dandelyon
Date: 2010-07-20 01:36 (UTC)
Subject: (no subject)
Ouch! That's not fair.

Yes, I know life's not fair. But still. You deserve better.

And so does the child.
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User: ygolonac
Date: 2010-07-20 01:39 (UTC)
Subject: (no subject)
I'm sorry to hear this.

Reading your life right now is like reading one of my nightmares and I can't keep doing it.

Good luck.
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Cat Rambo
User: catrambo
Date: 2010-07-20 01:39 (UTC)
Subject: (no subject)
Lots of good wishes, Jay. Hang in there.
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Kristine Smith
User: kristine_smith
Date: 2010-07-20 01:40 (UTC)
Subject: (no subject)
I feel angry for you. Hoping that this third shot at it will finally knock it out.
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The Empress of Ice Cream
User: icecreamempress
Date: 2010-07-20 01:46 (UTC)
Subject: (no subject)
Does your day job offer an option for your cow-orkers to donate paid time off? My husband has done that when colleagues have had health or family issues that required frequent or long absences. Perhaps this is something you've already looked into, so my apologies if this is redundant information at a time when you're already stressed.
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User: adelheid_p
Date: 2010-07-20 01:52 (UTC)
Subject: (no subject)
Sorry to hear this. I'm in the Fuck Cancer camp with you. You and family are in my thoughts.
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User: xjenavivex
Date: 2010-07-20 01:53 (UTC)
Subject: (no subject)
I am so very sorry. That doesn't really cover it. You have so much work to do, so many beautiful things to create. It isn't fair that you can't get back to that now, back to your life like it was or as to it as could have been. Instead, you are having to pack back off to this internal war. I am so sorry for your daughter. I think her astounding grasp of life that you've shared with us over the years only makes the gravity of this that much more obvious to her. If anyone can help her get through it though, Jay, that would be you. I am not saying this just because you are her dad. You give a voice to a journey so many others have had to take and you share it candidly. I don't know. I want to say anything to show support. It's just a shit deal all the way around for you and your loved ones and I am damned sorry.
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it's a great life, if you don't weaken
User: matociquala
Date: 2010-07-20 01:53 (UTC)
Subject: (no subject)
You're loved. Strength to your arm.
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User: autopope
Date: 2010-07-20 11:54 (UTC)
Subject: (no subject)

(Nothing to add.)
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Matthew S. Rotundo: Radioactive
User: matthewsrotundo
Date: 2010-07-20 01:54 (UTC)
Subject: (no subject)

Strength and hope to you.
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User: cathshaffer
Date: 2010-07-20 01:58 (UTC)
Subject: (no subject)
I'm so sorry, Jay. I hope they're able to do a scan or something midway through your chemo cycle to see if it's working. In retrospect, I guess this should have been done previously. I will keep you and your family in prayer, little girl most of all.
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User: madrobins
Date: 2010-07-20 02:01 (UTC)
Subject: (no subject)
Gods high and low, I am so sorry. I will hold you, the_child, and your other loved ones in my heart.
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Jenny Rae Rappaport
User: eiriene
Date: 2010-07-20 02:07 (UTC)
Subject: (no subject)
Fuck, oh fuck.

I know it's not my decision, but I vote for canceling the trip and attacking this again sooner. Hang in there, please.

*much hugs and love*
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Jenn Reese: daisy
User: jennreese
Date: 2010-07-20 02:11 (UTC)
Subject: (no subject)
Sending every good thought and scrap of energy to you and your loved ones.
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User: copperwise
Date: 2010-07-20 02:23 (UTC)
Subject: (no subject)

Keeping good thoughts for you.

Fuck cancer.
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