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Jay Lake
Date: 2012-10-26 05:53
Subject: [cancer] Cancer details, by the numbers
Security: Public
Tags:cancer, health, personal
Though it's no particular anniversary for me, today I have session three of series three of my chemotherapy. Not to mention a serious discussion with my oncologist about this Vectibix-induced skin rash, which appears to be spreading to the palms of my hands. I find that enormously concerning.

This will be the twenty-seventh chemotherapy session I've had in the past two and half years. Inspired by [info]jimhines' recent post on his diabetes, here is something of an accounting.

I have had Stage IV colon cancer for the past four and a half years. There has been one primary presentation and three metastatic presentations. All four presentations were single-site (meaning only a single organ system was affected), and my current metastatic presentation in my liver (the second such) is my first multi-focal presentation (meaning multiple tumors in a single organ system).

To quote Jim, I've "talked about the disease before", because yay education and knowledge! Those entries are available by clicking on the cancer tag.

Based on Jim's post, I'm going to throw out some numbers of my own. As of October 25th, 2012…

  • I have spent fifteen months on chemotherapy across two full series and one in progress now

  • I have spent 78 days hooked up to an infusion pump for delivery of that chemotherapy

  • I have lost approximately ten months of productive writing time due to cognitive deficits brought on by chemotherapy

  • Though more difficult to calculate, I estimate that cancer has cut both my net writing productivity and my income roughly in half

  • I have had four major surgeries

  • I have spent about thirty days in the hospital for surgery and post-operative recovery

  • About eight of those days were spent in the ICU

  • One of those days was spent being hospitalized for extreme constipation, which is about the worst thing you can be hospitalized for, assuming you wish to keep a shred of your dignity intact

  • I have worked with six different medical and surgical oncologists, two as primary doctors and four for second opinions, as well as about eight oncology nurse practioners

  • I have also worked with a GI surgeon and a thoracic surgeon

  • Best guess at the nominal billing value of the treatments (surgery, hospitalization, chemotherapy, medical imaging, lab tests, doctor visits) which have kept me alive these past four and half years: $500,000

  • Best guess at the adjusted insurance contract value of those treatments: $350,000

  • My direct out of pocket costs (deductibles, co-pays, over the counter medicines, etc.): About $5,000 per year

  • My indirect out of pocket costs (increased heating bills, trip cancellations, changes in wardrobe and furniture, etc.): About $5,000 per year

  • Number of years this has shaved off my life expectancy: 25

  • Number of years of additional life I've gained so far thanks to half a century's worth of research into colon cancer and chemotherapy in general: 4.5 (I've already beaten a lot of odds)

  • Number of years further I can expect to live as this point: 2-4

  • Likely months of good health remaining in my life (far enough between treatments to feel like myself physically and mentally): Less than 12

Like Jim, I am very grateful to be in a position where I’m able to get reasonably good health insurance, as well as for living at a time when this disease is somewhat manageable, as opposed to being a rapid death.

A cure would be nice, and I'm surfing the leading edge of research and treatments, but I am at the mercy of the metastasis lottery, which given the number of cancer presentations I have experienced thus far will almost certainly continue to recur until the cancer comes back in an untreatable location, or we've run out of treatment options.

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User: mevennen
Date: 2012-10-26 12:57 (UTC)
Subject: (no subject)
I can say very little of use. We continue to think of you and wish you all the best.
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User: joycemocha
Date: 2012-10-26 13:05 (UTC)
Subject: (no subject)
Wow. The nominal billing for the son's Crohn's-related hospitalizations and surgery this year is something around $90,000 and his Crohn's treatments since diagnosis would be something around $150,000 (nine years). DH's heart/blood pressure meds misadventure came to a nominal billing of around $45,000. I'm not even going to try to take a stab at their direct out-of-pocket costs......
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User: talekyn
Date: 2012-10-26 13:29 (UTC)
Subject: (no subject)
I have no idea what my cancer treatment cost overall back in 2005, but I do know it's nowhere near the numbers you posted.

Continuing to send love and good thoughts your way, my friend. You inspire me, as you know.
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User: pierceheart
Date: 2012-10-26 14:26 (UTC)
Subject: (no subject)
I'm not someone you know. I started catching your blog here on LJ while I was in Afghanistan in 2010-2011.
Right before I deployed, my dad was diagnosed with colon cancer. He is fighting, too.

May you continue to beat the odds.
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