I am punished by vuvuzela fanfare.
Brains, brains, brains!!!.
Strawberry shortcake.
(Above photos by lillypond, Flickr set here.)
And the people of JayCon:
(Above photos by shelly_rae and the_child, Flickr set here.)
© 2010, M.E. Lake, Shelly Rae Clift and B. Lake.
This work by M.E. Lake, Shelly Rae Clift and B. Lake is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Posted: 6:47 am Sun July 04 2010 | Comments(3) |
shelly_rae is sleeping peacefully as I write this. I’m so glad she’s here. For the first time I’m not on the pump since January. (This would have been an infusion weekend, if I’d had another round.) calendula_witch, jkoke and karawynn were here yesterday sharing a nice Salvadoran dinner from El Palenque with me and the_child. And today, JayCon X.
I’m definitely coming out the other side of chemo. Not that isn’t a long, slow journey, but I can mark my progress almost daily. Last night over dinner I made a horrendously bad, quick-witted, literary dirty joke (well, pun, really). calendula_witch looked at me said, “Yep, you’re back.”
Some of the time, at least.
This party today is important to me. I survived. Again. A disease erupted from within my body, an inner assassin, a genetic error that has tried twice to kill me. I am still here. After leading an eremetic existence for these past months, seeing people I know and love, meeting online friends in person for the first time, and hopefully some totally new folks as well be both a practical reconnection to my social web and something of a ritual for me.
The reality is still pretty rough. Peripheral neuropathy continues to deepen. Fatigue is a constant companion. My GI still fights me more than it really should. But my mind is waking back up. And I feel a bit better every day. A bit more like myself.
We will know on the 19th if there are any further metastases established. We will know in late August if there are further colon polyps or candidate tumors. And we will never truly know if we have succeeded with this treatment, only that we continue not to fail. That’s my best case. But I’m running with it. And today I celebrate.
Posted: 7:14 am Sat July 03 2010 | Comments(4) |
Well, JayCon X is almost upon us. (That would be tomorrow, for those playing along with the home game version of this blog.) shelly_rae swoops in this evening to celebrate. calendula_witch already has jkoke and karawynn at her house. Many other folks coming in from Washington, California, even Nebraska. Plus all my local friends and family. Promises to be quite a shindig, and my body is delivering sufficient energy and focus for me to enjoy the party, assuming I don’t burn it up today.
Which I won’t.
Day Jobbery first, and soon, after which I’m going to mellow with calendula_witch, jkoke, karawynn and the_child. That means sitting in my Big Chair while they bang around the house and one another.
I did get to see Witchnest Manor yesterday briefly, though most of my visit consisted of taking a nap while calendula_witch consulted with her workiepersons about paint colors and whatnot. It is coming along nicely.
So light socializing today, heavy socializing tomorrow, and more light socializing on Sunday. My plan is to try my hand at writing on Monday (or possibly this weekend if I find a quiet hour and the energy) and see just how awake Fred is. Deadlines postponed by chemo impend.
Next week, a more normal routine. I figure another week and I might be fit to drive a car again, which would be convenient for the ordinary errands of my life. I continue to wake up from chemo fog in so many ways, and I am terribly excited about celebrating that tomorrow with some, all or none of you.
Posted: 5:21 am Fri July 02 2010 | Comments(4) |
[cancer] An interim summary of the chemo experience
In the course of this week I have written email to several people about cancer, chemo and surviving the experience. It occurred to me in working on those emails that I am now in the process of integrating the chemotherapy experience into some coherent narrative for my own emotional purposes. Following I present a very abbreviated user’s guide to the chemotherapy experience, drawn from those emails with permission of my correspondents.
For me, chemo has been characterized by several basics. The one I miraculously avoided is nausea. Apparently either the drugs worked or I have a cast-iron upper GI.
However, the disruption to my lower GI was incredible. You’ll want to be prepared for that. It comes on slowly, but eventually becomes nigh overwhelming.
Likewise the fatigue. The first month or so, I was doing alright, but around month three I was worn down all the time, and by month four I was in pretty much permanent collapse. I would tell people that I woke up every day for six months feeling like I’d just gotten over a terrible flu. As it happens, I work at home in both my day job and as a writer, but I would not have been able to commute after the first four months. I haven’t even driven a car since early May, due to slowed reaction times and reduced attention span/situational awareness. So if you work in a location other than home, I’d be prepared for that, as well, and make arrangements for work-at-home later in the chemo process.
Cognitive side effects are a stone bitch as well. I experienced lacunae in both short-term and long-term memory, dyscalculia, loss of focus, and later on in chemo, a near collapse stereotypical right brain function. My analytical thinking skills remained strong, though I had to take a lot more notes and use spreadsheets for things I’d normally do in my head.
Another thing I did from the very beginning was track my chemo side effects carefully. That was me looking for trends and issues. I eventually identified about 30 issues, which I brought as a spreadsheet to every pre-chemo oncologist consult. That was useful for me to know how I was changing, and my oncologist appreciated it as well. As my memory eroded during chemo (many of the side effects were cognitive), the tracking spreadsheet meant I didn’t have to rely on that iffy memory to brief the oncologist on my progress and issues. I strongly suggest you use a similar technique, whatever works for you.
The final thing I would want to share with you is that in my opinion, cancer is a social disease. It affects your friends and loved ones, and even people you might expect. My mother wound up hospitalized with health problems incited by her stress over my illness. More to the point, people are going to try very hard to hide the weirdness and fear they feel. One of the things I had to keep reminding people of was, in effect, “just because I have cancer doesn’t mean that your [flu/flat tire/bad day at work] doesn’t still suck a lot for you.” Getting people not to treat me like I was made of china was good for everyone involved.
This is manageable and survivable, but it will be one of the hardest things you’ll ever do. For myself, not having ever been severely injured, chronically ill or given birth, chemotherapy ranks right up with overcoming long-term clinical depression as the hardest thing I’ve ever done mentally and emotionally, and takes first prize as the physically hardest thing I’ve ever done.
I want to add that having a close, loving family, and thoughtful, dedicated caregivers, as I did with calendula_witch and shelly_rae, is perhaps the most important part of surviving chemo in one piece physically, mentally and emotionally.
For whatever it’s worth, these last few days once the lower GI storm had passed have been the best I’ve experienced in months. I’m hitting the recovery curve. Which is to say, objectively I still feel like stewed boots, but it’s a better class of stewed boots, I’m getting an extra hour or two a day of energy already, my mind is more clear, and I’m a damned sight happier to be visibly on the mend.
Posted: 5:12 am Fri July 02 2010 | Comments(5) |
Much better day yesterday, after I finally listened to
Watching
Meanwhile, bright forces gather for JayCon X this Saturday.
I am starting to see better terrain for my body and my mind and my spirit, and oh, goodness, is that a welcome change.
Posted: 5:29 am Wed June 30 2010 | Comments(1) |
Yesterday was the roughest Wednesday I’ve had yet during all of chemotherapy. On the week after infusions (ie, this week), that’s usually the day I start feeling a bit like myself. On the week before infusions, it’s usually one of the best days for energy and focus. Yesterday I was so exhausted I couldn’t climb the stairs inside the house without significant effort and a five-minute rest afterward. My lower GI was behaving abominably, even by chemo standards. In fact, it was amazing I could get to sleep last night, given those issues.
Also, the peripheral neuropathy is worse this week. I had to switch to full-fingered gloves last night instead of fingerless. My temperature sensation continues to be very odd. Once I had the full-fingered gloves on, my hands were simultaneously too uncomfortably hot (sweaty, clammy, itchy from the wool) and freezing cold to the point of debilitating (neural signalling errors from the peripheral neuropathy). The rest of my body couldn’t decide whether it wanted to be deep in blankets or out in the evening air of my bedroom. Like my hands, both at the same time, apparently.
However, sleep I did, almost ten hours.
I just want my hands to feel normal, though.
Posted: 5:43 am Thu June 24 2010 | Comments(0) |
Yesterday was Father’s Day, Midsummer’s Eve, and the day I came off the pump for the last time in this infusion cycle.
As for myself, I have all kinds of things to deal with. Prepping for JayCon X, getting back into the swing of being fully functional at work (I expect my first work trip in late July at this point), lining up the various medical followups, not to mention a dental appointment, getting a small problem with my foot seen to, etc.
My two biggest issues right now are, as previously discussed, the transient one of expectation management over the next few weeks, and the larger one of managing my fears and expectations of the future of my cancer.
In terms of the next few weeks, it would be very easy for me to say, “Hey, I’m off chemo, let’s go!” But I still have to cycle through the last, and toughest, round of the drugs, which means this week will be the usual exhausting nonsense, no matter what my backbrain is clamoring for. Next week will be the usual slightly less exhausting nonsense. I really don’t know what to expect from myself at JayCon, but it will definitely be a lift from my current state.
Otherwise I’m looking at the CT scan on the 16th of July and the oncology consult on the 19th as milestones, with a secondary milestone at my followup colonoscopy in early August. If chemotherapy has been successful and my body has been cooperative, I should be all clean except for a few polyps, which are to be expected based on prior experience. Polyps don’t scare me anymore, as they move slowly enough we can catch and kill them before they become tumors. I am a lot more scared of finding spots in liver, lymph or lungs. I’ve even been dreaming about it. There’s about a 40% likelihood of this in the next year, with the odds of recurrent metastasis diminishing over time. I just need to live in the now and look forward to my life, but I cannot pretend the fear away.
Always looking over my shoulder, as one of you very kind folks said in comments.
Meanwhile, the day awaits me, beckoning.
Posted: 5:10 am Mon June 21 2010 | Comments(3) |
Undoing the needle.
The Bottle Ritual.
Session 12 is over.
Look, ma, no bottles! A pirate abides, though.
My (step)mother brought me a gift, her project from surgery through chemo.
Me and me, immediately post-unhooking.
As usual, more at the Flickr set.
© 2006, 2010, Shelly Rae Clift, J.A.K. Lake, and Joseph E. Lake, Jr.
This work by Shelly Rae Clift, J.A.K. Lake, and Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Posted: 4:55 pm Sun June 20 2010 | Comments(2) |
Well, that was my last trip to the infusion center for this round of chemo. Due to my decision to keep the port in my chest, I’ll be back in there quite a bit in the coming months, but not to be pumped full of cytotoxins and corticosteroids. Thank Ghu.
We had cakes baked by
The infusion itself was pretty rough by the end, and I’m really wiped out today. During our consultation with the oncologist, we asked a lot of questions. Some of the answers were encouraging, some were damned sobering. I’ll make a post about all that in detail once I’ve had a bit more chance to process, and discuss with
Next steps for me are bloodwork and a CT scan on July 16th, followed by an oncology consultation on July 19th. I’ll have a colonoscopy in early August as well. For now, I have another day and a half on the pump, with all the joy and pain that entails.
Chemo bottle ritual for the last time on Sunday.
Posted: 8:08 am Sat June 19 2010 | Comments(1) |
I swear, it’s always something new. And usually unpleasant. Just in the past few weeks, my fingernails have begun to split on almost a daily basis. I’m talking snags and small cracks in the end of the nail, as anyone might get occasionally. They’re also thinner, as evidenced by the reduced amount of pressure required to clip them. It might be my imagination, but their quick seems to have more ridges than they used to.
Uneasy dreams last night, mostly about awkward, failed teen-style attempts at sex, and travel frustrations. Imagine Planes, Trains and Automobiles combined with American Pie, except there was never this one time at band camp. Ah, to have a life of the mind.
This is the last time I go in for the FOLFOX/Avastin cocktail. It seems both a trivial moment and a huge one. My (step)mom,
Speaking of life changes, I direct your attention to this conversation between
We all change, then we change some more. I could just do without the medical drama.
Posted: 5:46 am Thu June 17 2010 | Comments(3) |