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[cancer] Field notes from Cancerland, recuperative edition - Lakeshore
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Jay Lake
Date: 2013-01-29 06:33
Subject: [cancer] Field notes from Cancerland, recuperative edition
Security: Public
Tags:cancer, child, family, friends, health, personal, radiantlisa
Physical Recovery

Damn, this shit hurts. At least I can cough or sneeze now without almost blacking out from the pain. Sleeping okay as well, which is good. If I weren't so averse to opiates, I'd be cruising along in an Oxycodone haze still, but that ain't happening. My appetite is good, and I have decent mobility. Mostly I feel like I got kicked by a horse with knife-sharp hooves.

Next Steps

Dad spent a lot of time on the phone yesterday with various parties, most notably my health insurance carrier. With these new developments, I will yet again be seeking a second opinion at a major national cancer center. This is ironic, considering I do not even have a first opinion yet. I expect to travel sometime in the next few weeks. Both Dad and Lisa Costello will be going with me. (Details TBA when they're confirmed, and possibly an Open Dinner.)

Likewise, I've been on the phone and email a lot, chasing details around life insurance and disability coverage. Other friends have been pitching in to backatop us with technical information and advice, notably my health science advisors [info]mikigarrison and Catherine Shaffer.

Basically, we're pursuing several tracks right now, all in parallel:
  • Proceeding with treatment at my 'home' hospital. I have appointments with both my medical and surgical oncologists next week.

  • Arranging a second opinion consultation at a leading center for advanced colorectal cancer,

  • Arranging interpretive services for the forthcoming tumor genome sequencing data.

  • Investigating an experimental immunotherapy program which happens to be taking place here in Portland.

  • Investigating clinical trials nationwide (and worldwide) which may be relevant to my particular disease progression and staging.


Emotional Impact

This is much trickier. I'm still struggling a lot to process the news about the additional tumors in my lesser omentum and thoracic diaphragm. In part, my unease is due to incomplete information: we don't have the pathology reports back on the tumors, and there are several possibilities here which will affect treatment decisions and my survival time. For example, if the omental tumors were necrotic (a possibility based on visual observation), that says one thing about my disease course and the efficacy of chemotherapy. If they're relatively robust, that says something else entirely. As anyone who's followed me for a while knows perfectly well, it's this kind of uncertainty that drives me nuts.

I'm also trying to cope with a lot of dread and fear. By any possible interpretation, the surgical outcomes are bad news. What we're wrestling with is the question of "how bad is bad"? These new presentations degrade my prognosis and almost surely further shorten my already heavily compromised life expectancy. Mind you, we still haven't given up on working for a full cure, but the odds of achieving that have grown very small indeed. Some of the acceptance I thought I'd found of my mortality and disease processes has been disrupted.

Family Impact

[info]the_child is weathering my surgical recovery well. My illness is a real emotional challenge for her, even though she is pretty sanguine about my long term prospects. She is holding up, and is an active participant in my post-operative care and recovery.

Someone asked me in email about Mother of the Child. MotC has no Internet footprint to speak of, and is very private, but obviously all this affect her deeply. We interact daily over [info]the_child's activities and life needs. My illness is very much a part of that.

Lisa Costello has been blogging about this herself. She's not nearly as verbose as I am, but she speaks her mind.

My parents, my sister, my close friends; they are all involved in different ways. It's tough at best, and seems to be only getting tougher.

What Does It Mean

What does it mean? That changes every day. Speaking in a large sense, I'm afraid my life has grown quite short, and I will spend most or all of what little remains to me being quite ill. That's not a foregone conclusions, not yet, but it is by far the likeliest outcome at this point.

I'm not giving up, that's not my way, but I feel profoundly daunted.

On the other hand, I live, love and laugh every day. That counts for a lot.

Post A Comment | 16 Comments | Share | Link






Gummitch
User: gummitch
Date: 2013-01-29 14:49 (UTC)
Subject: (no subject)
I can't be the only person who's going to send you this link, but just in case: http://www.bbc.co.uk/news/health-21235103.

My partner signed forms to contribute samples for this study.
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Jay Lake
User: jaylake
Date: 2013-01-29 14:55 (UTC)
Subject: (no subject)
We're doing something similar with the tumor genome sequencing I'm having performed. So, yeah.
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Jay Lake: flowers-sunflower
User: jaylake
Date: 2013-01-29 15:04 (UTC)
Subject: (no subject)
Keyword:flowers-sunflower
Thank you.
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joycemocha
User: joycemocha
Date: 2013-01-29 15:04 (UTC)
Subject: (no subject)
Hugs. Thinking about you, but until I stop coughing...no visits. Could be a while, unfortunately, but I don't want to bring germy friends.

eta, possibly TMI: coughing with compromised mucus. Regular seasonal allergy coughing is one thing (and the filberts/hazelnuts are starting to bloom, which is one allergy), but I'm still dealing with the last trails of this bug.

Edited at 2013-01-29 03:06 pm (UTC)
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torreybird
User: torreybird
Date: 2013-01-29 16:01 (UTC)
Subject: (no subject)
"I live, love and laugh every day. That counts for a lot."

Makes me consider how many healthy folks don't have those three in their lives. You're a wise and lucky man, for an unlucky man. Warm wishes.
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russ
User: goulo
Date: 2013-01-30 09:34 (UTC)
Subject: (no subject)
Beat me to it - I was thinking the same thing! :)

We're all gonna die sometime, but not everyone manages to love and laugh and enjoy life while they're alive. Knowing and admiring Jay for years, I am not at all surprised that cancer does not stop Jay from loving and laughing (and doing all kinds of other good Jay-like things)...
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Deborah J. Ross
User: deborahjross
Date: 2013-01-29 17:25 (UTC)
Subject: (no subject)
De-lurking mode here. You are much in my thoughts.
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Kari Sperring
User: la_marquise_de_
Date: 2013-01-29 17:34 (UTC)
Subject: (no subject)
Hug
Kari xx
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Msconduct
User: msconduct
Date: 2013-01-29 20:49 (UTC)
Subject: (no subject)
Ugh, uncertainty. Doesn't suck as much as cancer, but still sucks. At least you have plans you can make in the interim to help wrestle it to the floor.

What with the larger news about the other abdominal tumours, I don't recall Ashcroft being mentioned. Was it there on physical inspection? (Fingers crossed for no.)
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Jay Lake: cancer-do-not-want
User: jaylake
Date: 2013-01-29 20:57 (UTC)
Subject: (no subject)
Keyword:cancer-do-not-want
It's not clear to me right now if Ashcroft was what turned out to be the tumor in my thoracic diaphragm, or if it was separately present. I'll know by next week, either from receiving the surgery and pathology reports in the mean time, or from the two meetings I am having with my oncologists next week.
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martianmooncrab
User: martianmooncrab
Date: 2013-01-29 21:07 (UTC)
Subject: (no subject)
I'd be cruising along in an Oxycodone haze still

Oxymobiles are driverless units, everyone is a passenger.

here again is the most up to date list of Social Security's Compassionate list of diseases that would get you SSDI

http://www.socialsecurity.gov/compassionateallowances/
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Jay Lake
User: jaylake
Date: 2013-01-29 21:17 (UTC)
Subject: (no subject)
Interestingly, my cancer is not on that list.
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martianmooncrab
User: martianmooncrab
Date: 2013-01-29 21:19 (UTC)
Subject: (no subject)
maybe once they sequence your cancer it might be something on the list, which comes back to Knowing a True Name is Power over It.
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Jenny Rae Rappaport
User: eiriene
Date: 2013-01-30 04:14 (UTC)
Subject: (no subject)
I suspect you still qualify for SSDI though. I know, if I ever get terribly bad (and I'm not, thank god), that I can qualify because of my ulcerative colitis. It's not done as a compassionate allowance, but it's still eligible under certain clinical conditions.
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Geri Sullivan
User: gerisullivan
Date: 2013-01-31 00:09 (UTC)
Subject: (no subject)
Looking at the compassionate allowances list, I am once again croggled by just how many diseases there are that I've never heard of.

It's not the wording I would have expected, but one cancer on the list seemed to fit: "Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent"

I'm totally with you on the effects of uncertainty.

Here's to continued daily life, love, and laughter.
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