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Jay Lake
Date: 2012-08-16 05:34
Subject: [cancer] My Terrible, Horrible, No Good, Very Bad Day
Security: Public
Tags:cancer, health, personal
Yesterday, I met with both my medical oncologist and my surgical oncologist. We discussed this week's CT scan results and the recommended treatment paths.

In short, I have three metastases in my liver. The largest is about 2.8 cm. They are present in both the left and right lobes, and one borders on the peritoneal boundary, though there is no current evidence of interpenetration with the peritoneum. (For those keeping score at home, this is my third metastatic presentation following on my original presentation of primary colon cancer in April of 2008. In other words, my fourth bout with Stage IV colon cancer in four and a half years.)

These metastases are surgically addressable. My surgical oncologist does not foresee significant difficulties with the metastasis bordering the peritoneum, but he says if it does look troublesome during surgery, he will fall back to radio frequency ablation (essentially, cooking the cells in and around the site with a microwave tipped probe).

My medical oncologist wants to use the third of the available chemotherapy sequences, which is a reprise of FOLFOX (from the first chemo series) with the addition of Panitumumab (Vectibix). This drug combination attacks the cancer from a different metabolic pathway, specifically blocking something called EGFR.

Neither of the doctors felt like the more rapid multisite presentation of the metastases was outside the expected norms for my cancer. As my surgical oncologist said, if we saw systemic metastasis or multiple organ systems involved, he'd be a lot more concerned. At the same time, both of them were somewhat evasive on the subject of my achieving a full cure. While we still have not officially given up on that goal, it's pretty clear that presenting a third round of metastasis has further diminished my chances of full cure. Reading somewhat between the lines, I'd guess two to three more years for me to live, much of that quite ill either from the treatments or from the end-of-life processes. My medical oncologist did put my five year survival rate at 25%, which based on previous comments seems optimistic.

The good news, which may affect my life expectancy somewhat, is that a fourth chemo series is the final stages of approval, and may be available next year. This would give us one more round of treatments in the rather likely event of further metastasis. As both of them said in slightly different phrasing, we might be having this conversation again next year.

I have been prescribed a twelve-session course of chemotherapy, interrupted after six sessions for liver resecting. I asked whether we should do the surgery first or last, but both doctors in consultation with one another felt this interrupted plan would be most desirable, as it would allow us to gauge the effectiveness of the chemotherapy course halfway through.

The current plan is as follows:

Friday, 8/17 - PET scan
Monday, 8/20 - Business trip to Omaha
Wednesday, 8/29 - Fly to Chicago for Worldcon
Week of 9/3 - Followup CT scan
Thursday, 9/6 - Day surgery to implant the chest port
Friday, 9/7 - Session one of FOLFOX+
Five additional sessions of FOLFOX+, roughly through the end of November
Followup CT scan in early December
Surgery in late December or early January
Six sessions of FOLFOX+, roughly February through April

The first FOLFOX series was very difficult for me. I experienced significant cognitive and emotional impairments which took as long as six months to clear after the end of the chemo series. Also, the peripheral neuropathy was awful. The Panitumumab (Vectibix) also introduces the potential for a significant skin rash with outbreaks of acne as a side effect. I have already been prescribed antibiotics and topical cream for that. Occurrence of this rash is considered a good thing, as it indicates the drug is working.

I am investigating seeking a formal second opinion on this treatment course. I'm not sure there are a lot of good options at this point, but want to confirm that the current plan makes the most sense for my survival and my quality of life. Because of my schedule, the process of seeking this second opinion would likely push commencement of my treatment back a week or possibly two.

After Chicon, I am canceling the rest of my appearances for the year, and 2013 through at least April. This includes me missing both Surrey International Writers Conference (again) and World Fantasy Convention (again).

If it helps you to pray for me, feel free to pray. Just because I'm an atheist doesn't mean I think you should be. Likewise, if it helps you to cuss, feel free to cuss. Or send a check to the American Cancer Society or the Clayton Memorial Medical Fund. Or buy one of my books. Or just go tell someone you love them.

One foot in front of the other.

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User: yourbob
Date: 2012-08-16 15:18 (UTC)
Subject: (no subject)
Fuck cancer and the horse it rode in on.

A thought. Connect with writers and start some collaborations. I know how much writing means to you. get some things started as you head into this, so you can hand off, or get assistance in finishing/working through as you go through this round. Come out the other side of this next year with a "Jay Lake Writing With Friends" body of work.</p>

Make it an anthology. I'm betting you could get enough people together to have three or four authors for each story in anthology.

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User: threeoutside
Date: 2012-08-16 15:26 (UTC)
Subject: (no subject)
Hugs, dood. From what others are saying there are many reasons to keep hoping and fighting.

See you next week!
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User: msconduct
Date: 2012-08-16 15:47 (UTC)
Subject: (no subject)
"I'm sorry" hardly covers it. I will be hoping the universe aligns in your favour.
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User: (Anonymous)
Date: 2012-08-16 15:53 (UTC)
Subject: (no subject)
I'm rooting for you.

I'll see you at Worlcon.

Carrie V.
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User: beth_bernobich
Date: 2012-08-16 16:22 (UTC)
Subject: (no subject)
Keyword:balloon heart
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W. Lotus
User: wlotus
Date: 2012-08-16 16:33 (UTC)
Subject: (no subject)
I'm glad the tumors are surgically addressable. I am also heartbroken for you.
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Twilight: Buddies
User: twilight2000
Date: 2012-08-16 16:36 (UTC)
Subject: (no subject)
First, :::Hugs:::

Second, what yourbob said. And if you don't have someone better at it, I volunteer to coordinate this group write if you go this way.

Third, go kick cancer's ass!

Good thots and good energy headed your way :>
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Jenn Reese: grumpy
User: jennreese
Date: 2012-08-16 16:47 (UTC)
Subject: (no subject)
I'm so sorry this horrible, miserable thing is happening again. I'll be thinking of you often.
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User: dsgood
Date: 2012-08-16 17:20 (UTC)
Subject: (no subject)
Sending good thoughts.
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User: (Anonymous)
Date: 2012-08-16 17:30 (UTC)
Subject: (no subject)
I'm so very sorry, Jay.

What can we/I do to be the best possible help to you? Respond to your LJ/FB posts? Send paper cards or flowers? (Or cigars, or chocolates?) Send cool little gifts to you or The Child? Is there maybe a DVD set of a TV show that might help occupy your time while you're dealing with surgery/chemo stuff?

I realize this is a path you necessarily walk alone. But I want to help smooth the path where I can, and I'd bet lots of us feel the same way.
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User: martianmooncrab
Date: 2012-08-16 17:59 (UTC)
Subject: (no subject)
I tend in the face of adversity to resort to bad humor and quips. That way, when everyone is either shocked or laughing, I can make my escape.

Good for you to go for the second opinion/option. It is your life and your choices. You never know when you will be the statistical anomaly!

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Kari Sperring
User: la_marquise_de_
Date: 2012-08-16 18:15 (UTC)
Subject: (no subject)
There are not words.
Fuck cancer sidewise with a rusty park bench.
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User: anghara
Date: 2012-08-16 19:18 (UTC)
Subject: (no subject)
HAving a second opinion at this point probably would not hurt anything at all. It might not HELP, but anything that would make you feel at least metaphorically better is a good thing right now.

I don't pray, but I can send you the best good vibes I can. And you're constantly in my thoughts.
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User: randy_smith2
Date: 2012-08-16 19:22 (UTC)
Subject: (no subject)
Praying it is. Cussing, too. As always, my thoughts are with you.
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January 2014
2012 appearances