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[cancer] I have seen the future, brother, and it is murder - Lakeshore Page 4
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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: witchcraft_shop
Date: 2010-07-20 10:45 (UTC)
Subject: (no subject)
You finished the rant as you should have - you will fight.....

Thoughts with you brother.
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Paul Haines
User: paulhaines
Date: 2010-07-20 11:18 (UTC)
Subject: (no subject)
Hey Jay,

Looks like you're following my path so far, sorry to say. I had 2/3s of my liver removed at the start of last year after it had spread there during my FOLFOX chemo. It later spread to the lymph nodes in my chest.

I'm on a clinical trial at the moment that uses another monoclonal antibody treatment and I'm getting good results. All tumours are shrinking. I'll be at WorldCon too (I live in Melbourne) so if you want to talk some shit I'd be happy to. (Or drop me a line if you wish to know some more - as always lots of details on this stuff on my blog).

You'll get through this, lots of options open, even now.

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Jay Lake
User: jaylake
Date: 2010-07-20 11:23 (UTC)
Subject: (no subject)
Sounds like a line drive right down your path, yeah. Let's definitely talk, if I still make it to Melbourne.
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User: elizaeffect
Date: 2010-07-20 13:05 (UTC)
Subject: (no subject)
God DAMN. You and your family are in my thoughts.
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User: mevennen
Date: 2010-07-20 13:12 (UTC)
Subject: (no subject)
FUCKING cancer. Jay, I'm sorrier than I can say to read this.
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User: chris_gerrib
Date: 2010-07-20 13:25 (UTC)
Subject: (no subject)
I'm very sorry to read this.
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User: rarelylynne
Date: 2010-07-20 13:43 (UTC)
Subject: (no subject)
*hug* :: for you and the_child
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mythicalgirl: buddha
User: mythicalgirl
Date: 2010-07-20 13:50 (UTC)
Subject: (no subject)
I am so sorry. Strength and love, my friend.
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User: mroctober
Date: 2010-07-20 13:52 (UTC)
Subject: (no subject)
You are in my thoughts.
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User: pmrabble
Date: 2010-07-20 14:14 (UTC)
Subject: (no subject)
Damnit. Wish you well. Cancer sicks.

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The Texas Triffid Ranch - Odd Plants and Oddities
User: txtriffidranch
Date: 2010-07-20 14:14 (UTC)
Subject: (no subject)
Is there anything any of us can do to help? I'm particularly good at silly but heartfelt gestures.
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User: pauljessup
Date: 2010-07-20 14:16 (UTC)
Subject: (no subject)
That's horrible and terrible and someone as awesome as you shouldn't be going through this shit.

My thoughts are with you and yours.
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C. C. Finlay: river
User: ccfinlay
Date: 2010-07-20 14:17 (UTC)
Subject: (no subject)
Jay, I've got you in my thoughts. And it's all thoughts of you grabbing this tumor fucker by the throat and kicking the living shit of it.

Stay strong, friend.
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User: pauljessup
Date: 2010-07-20 14:57 (UTC)
Subject: (no subject)
Yes, I second that.
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User: (Anonymous)
Date: 2010-07-20 14:18 (UTC)
Subject: Stay hopeful!
My aunt was diagnosed with terminal pancreatic cancer and given 6 months to live. That was almost four years ago. I was diagnosed with an extremely aggressive form of non-Hodgkins lymphoma. They told me I had about 48 hours to live. That was five years ago and I'm cancer-free. Sometimes you go in for a scan and get good news, sometimes you get bad news, but you keep plugging along and after awhile you start getting nothing but good news. It takes awhile to do long-term studies and medical advances are moving faster than we can evaluate. Things are always better than they appear.
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User: taylorgibbs
Date: 2010-07-20 14:23 (UTC)
Subject: (no subject)
I'm so sorry :( I'll keep all of you in my thoughts.
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