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Jay Lake
Date: 2009-05-17 14:39
Subject: [cancer] Where the heart goes when the head doesn't know
Security: Public
Tags:calendula, cancer, health, personal, travel
Still no change in the medical situation. Polyp is out for pathology; PET scans are somewhere in the nuclear medicine pipeline, which will eventually disgorge them to my doctor. More will be known next week, news to come in whilst I am peregrinating about the North American continent. Been a challenging weekend for everyone in my life, not the least me. calendula_witch has been a rock, as have my friends and family.

As I have been doing since the beginning, I'm setting down here my thoughts and feelings about this. Frankly, I'm tried of hearing myself talk about it. I'm tired of being afraid. I'm tired of living through this. All this while quite possibly a more troublesome path has only just begun.

I've managed to break the muddle in my head down into three meaningful chunks. This discards Fear, Doubt, panic, general chowderheadedness, petulance at the manifest unfairness of the Universe and whatnot. Those are real too, but essentially are mental and emotional static.

Three things are meaningful at this point.

First, the polyp. A medium-sized polyp was removed from my colon last Thursday and sent out for pathology. Morphologically it doesn't appear to have been malignant, but they have to analyze. Malignant or not, this is troublesome for the simple fact that I shouldn't have been able to grow a polyp of that size in twelve months. What this suggests (in my personal understanding, not via medical advice) is that my colon is going to be fairly aggressive about polyps, and therefore, cancerous behaviors. This means that last year's Excellent Cancer Adventure was not a one-time thing, but more of a lifestyle. That being said, this is also completely manageable. My risk factors are higher, but my quality of life isn't particularly compromised, nor is my life expectancy, so long as I keep ahead of new growth.

Second, the recurrence issue. Part of my coping with last year's cancer was an increasing belief in the prevailing medical advice that I was an excellent risk. My doctor has observed that patients with my recovery profile and baseline health can often return to the general population. Five years of clean colonoscopies would have done that for me. But this isn't a one-time issue, it's a recurring issue. Which means, emotionally and healthcare-wise, I can never again afford to trust that this is all over. In a sense, the emotional impact of recurrence is a subset of the above issue, but in my mind, it takes on a life of its own. I am currently experiencing a profound mistrust of my body — My gut is trying to kill me! Again! — which is very inappropriate. I cannot heal and maintain health without an emotional and physiological balance. I'm angry, afraid, sad, and having to discard my now-obsolete fantasy of ever being normal in this regard.

Third, the spots on the CT scan. This is only speculative, me reacting to ambiguous results, but it's huge. When the PET scan results come in, I'll retrench and go forward. But today, two factors emerge. If I have tumors in my liver, that's operable. I'll have another version of last year's surgery experience, after which I'll be missing more of my body parts, and have an excised tumor. That sucks, it's alarming, I have fantasies of someday being a hollow man, whistling words wrapped in parchment skin, but by God, if I'm alive to see the day, then I have won.

If I have tumors in my lymph nodes, that's where the big black hole of scary opens up. A whole new meaning of the Fear emerges from that. Lymphatic cancers are inoperable, pretty much by definition. They can take specific nodes out, I suppose, but the lymph system as a whole can't be excised. That will invoke chemotherapy. And mortality rates on lymphatic cancers vary from "yeah, whatever" to "keep the mortician on speed-dial." If any of this is going to put me into the ground fast and early, it will be the lymphatic involvement. Even without that, chemotherapy will quite possibly alter my life in ways that even surgery can't do. I don't want to be a spindly, balding ghost in my own body.

Obviously my reactions to these realities are highly emotional. Also not necessarily grounded in any medical best practices or solid thinking. When I know more data, I can move my goalposts and substitute planning and understanding for the simmering panic which best characterizes my mental state at this point. If I'm very lucky, the PET scan will tell us the CT scan was erroneous. Which still leaves the polyp and the recurrence issues, but I'd be damned glad to only have those to focus my anger and dread upon.

Originally published at jlake.com.

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User: joycemocha
Date: 2009-05-17 22:56 (UTC)
Subject: (no subject)
Fortunately--or unfortunately, depending on your definition--I know several chemo and radiation survivors. Breast cancers, but in some cases it's been fairly aggressive breast cancers.

Let me know if you want to link up with them.

That said, the Fear never truly goes away. My colleague who'd been clean for seven years--and had a scary followup--literally fell to pieces when the news came to her last year that something didn't look right.

Whatever it is, you've got support from here. I've got three more weeks of school, and then if you need another hand round about, I can help.
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Jay Lake
User: jaylake
Date: 2009-05-17 23:13 (UTC)
Subject: (no subject)
Thank you. We shall see what unfolds, and how...
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Eva Whitley: cloud
User: wouldyoueva
Date: 2009-05-17 23:02 (UTC)
Subject: (no subject)
Nothing specific, but you've squelched my pissing and moaning about a second colonscopy (first was inconclusive so they wanted me to get a 2nd one ASAP, where turns out to mean 3.5 months later), and the prep the last day of Balticon (which means I'll be skipping the last day of Balticon).

FWIW, I understand great strides are being made every day in chemotherapy but it still sucks. Good luck to you.
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Jay Lake
User: jaylake
Date: 2009-05-17 23:05 (UTC)
Subject: (no subject)
Do not let that one drag on. Good for you on following up now.
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User: bram452
Date: 2009-05-17 23:09 (UTC)
Subject: (no subject)
May I respectfully suggest you schedule a couple really good massages, watch some good movies you haven't gotten around to (seen Michael Clayton yet?), and don't read any books that fail to hook you in the first fifty pages.

I'm up at the Mayo Clinic with the Darling Wife on a non-cancer-related-but-still-WTF medical issue, and what I've been saying to her all along is that if we can't make her feel better, at least we can make her feel better.
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Jay Lake
User: jaylake
Date: 2009-05-17 23:13 (UTC)
Subject: (no subject)
My love and good energy to your Darling Wife. Any WTF which takes one to Mayo is pretty damned WTF. My stuff is sadly ordinary.

And yes, working on those quality of life issues...really, I do okay on that. I have a lot of love, laughter and reading in my life.
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User: karenjunker
Date: 2009-05-18 00:09 (UTC)
Subject: (no subject)
Your explanation and logic about the situation makes it less scary for *me*, as one of your extended fan/friend network. I know that doesn't help you, but...thanks. I picture us all out here as a vast sea of beings, sending you all the love and encouragement we can.
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The Green Knight: Hug
User: green_knight
Date: 2009-05-18 00:10 (UTC)
Subject: (no subject)
Chemotherapy sucks, but it beats death. Literally.

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User: lauriemann
Date: 2009-05-18 00:16 (UTC)
Subject: (no subject)
One of the really weird things about life/getting older is that you never know what you're going to be handed healthwise.

If someone had said, "You're going to have diabetes before you were 50," I probably would have said, "Half my of my fat relatives had diabetes, so I understand I have an increased risk." Or skin cancer (being blonde and liking to sit in the sun when I was younger, already had the ever popular "suspicious moles" removed, but they were OK). Or cervical cancer (DES daughter, unclear what the risks are after menopause).

These are things I've always been somewhat prepared for.

I got handed a big surprise last year - macular degeneration.

No family history. Don't smoke. Have high blood pressure, but it hasn't been that high. Am fat, but still!


No treatment. All I can do is be rigorous about those sunglasses and go for annual testing. There is a stem cell treatment that will be studied in about two years, but it won't be commonly available and it may not work anyway. I'd love to be part of that first test group though.

For me, the worst part is going to be giving up driving. Jim hates to drive, but he's starting to adjust.

Most of the other stuff, I can get around. I already find it much easier to read online than to read books. I can probably learn Braille if I have to (most people with AMD have some residual sight).

I'm sorry if this isn't chipper. I guess...shoot, it's just we never do know what's going to happen to our health. It often seems completely random.
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misofuhni: I'm not writing
User: misofuhni
Date: 2009-05-18 00:32 (UTC)
Subject: (no subject)
Keyword:I'm not writing
Far be it for me to tell you what to do or not to do, but don't you ever apologize for bogging your emotional experiences through this ordeal. First, it's unhealthy to bottle it up. Next, it helps to untangle the mess that it creates in your mind. It also helps you to deal with it in relationship to your everyday life. Keep it up. If we get bored, I for one, will not tell you that. You do what you have to do and let us worry about ourselves.

I'll shut up now and turn over the soapbox to a more deserving customer.
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kyle cassidy
User: kylecassidy
Date: 2009-05-18 00:52 (UTC)
Subject: (no subject)
i've been thinking about you / this constantly since you posted about the new polyp last week. it's become very real & saying "i wish you the best" doesn't really begin to express it. "it keeps me awake at night" is more truthful.

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User: anghara
Date: 2009-05-18 00:52 (UTC)
Subject: (no subject)
I am so sorry to hear about all the new troubles. Cancers don't run in my family - a lot of my ancestors keeled over from high blood pressure and the consequences of that, which I've somehow managed to completely escape with my own PB being somewhat subterranean - and thus I have no direct experience to share, no wisdoms to impart, nothing to add except that my thoughts are with you and I hope that everything works out in the best possible way that the current circumstances can possibly permit them to...
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dinogrl: buzz lightyear
User: dinogrl
Date: 2009-05-18 00:58 (UTC)
Subject: (no subject)
Keyword:buzz lightyear
I'm down with the massage thing. You know, we gave you that Massage Envy info last time we saw you. It's been a godsend for me with my health conditions, and someday I may be able to walk more pain free! I hate to say it, but if it means blowing off dinner with us when your here, get the massage.

Big Interweb Hugs until I see you in Santa Clara.
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Somewhat Bent: Blessings
User: ladyallyn
Date: 2009-05-18 01:34 (UTC)
Subject: (no subject)
Blessings and Well Wishes, my friend...

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Passionately decaying organic matter
User: miintikwa
Date: 2009-05-18 02:06 (UTC)
Subject: (no subject)
I do not know you, but having been a lurker reading your blog for some time with my own medical foo, I can greatly relate to Fear from medical issues, and the resultant head-spin.

I hope that you are able to wrangle all of yours soon, and that everything is benign and manageable. (I've had two non-cancerous polyp-related scares of my own in the recent past. Fingers crossed for you.)
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User: fjm
Date: 2009-05-18 06:36 (UTC)
Subject: (no subject)
Love you. Hugs. All that stuff. Will keep thinking of you.
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User: mevennen
Date: 2009-05-18 08:49 (UTC)
Subject: (no subject)
T will probably reply on his own behalf but he had both chemo and radiotherapy. Radio is obviously rough because of its side effects; chemo varies greatly. T didn't lose his hair and after the second chemo session, left the hospital to go to the pub up the road. He had a few days of what looked like a nasty flu halfway through, but apart from that, didn't miss a day of work throughout the whole process, including driving himself to the hospital (2 hours every day). A friend of ours is on chemo drugs for arthritis: only the dosage stops them being considered a course of chemotherapy. Chemo for breast cancer is apparently very unpleasant, but it varies so widely - don't assume that because it's chemo, it invariably knocks you right out.

T's cancer had spread into the lymph, but it removed itself. Chemo goes on working months after the actual treatment stops.

I cannot advise coherently about the fear of it. I live with it every day, and until one of us goes, I will live with it for that space of time: on T's behalf, not my own. But it doesn't stop life from going on. I haven't conquered it and I don't expect I ever will. I just endure it. Other people will have different views (I hope). And each day that you go on, is a triumph.

We have been thinking about you a great deal and I am really hoping that all the results come back at optimum and you can get on with your life.

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russ: zen
User: goulo
Date: 2009-05-18 10:00 (UTC)
Subject: (no subject)
Good luck! I still suspect you're going to conquer this as you conquer so many problems. You're in my thoughts. Sorry I don't live closer to come hang out with you, like a long time ago in Austin far far away!
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User: fledgist
Date: 2009-05-18 10:51 (UTC)
Subject: (no subject)
I've been thinking good thoughts about you. Good luck.
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