A day in the life

Pinball in Asbury Park, NJ - Plunger, by Bob Jagendorf on Flickr, licensed under Creative Commons

Another feature of this “living with cancer” thing: Feeling like I am always lying in wait for the next big storm. And I can’t possibly know where it will come from. An electrical storm, and your body is a whole open field of lightning rods that aren’t grounded. Who knows where it will strike?

A spot – a freckle, really, but kind of large for a freckle – just kind of showed up on the top of my foot a couple weeks ago, and I was a little spooked. My cancer medication can cause skin toxicities, so I’m always supposed to be on the lookout for those. But I have read – probably too much – about metastatic melanoma patients who develop a new primary melanoma elsewhere, so I know that is possible.

I took a photo of it, and sent it to Nurse Practitioner K, who said it seemed like a bruise, but to keep an eye on it. I did. It didn’t grow, but it did get darker. Today I went to see my dermatologist about it. I was hoping he wouldn’t take a biopsy, because it would take a hell of a long time to heal. Indeed, it was nothing – probably vascular, a bruise, something like that. Whew.

But I’ve also got this seemingly endless cold, and a headache that has been with me on and off for several days, and I can’t help having flashbacks to last April’s events. I keep asking my body to remember the headaches from last year, compare how similar or different they feel to the ones I have now. But guess what? You can’t actually do that. Your body is not some reliable pain archive that you can access at will. (Good thing, too, or else most women would stop reproducing after birthing just one kid.)

With each small event, there is the potential for it to escalate to something bigger, more serious, all-encompassing, derailing. Or, it can be nothing. If only I could get access to the person who has their hand on the pinball plunger, ask them to just go easy this time. I have a bike ride to train for. I have a trip to Italy to plan for, be excited about, and actually take. Also, my boys need to graduate high school and maybe college too and find careers and even have babies, before I am ready to disappear. Also I kind of was hoping to have a real job again one day, before the end. Just one real job, with a paycheck that doesn’t make me laugh, and also something really crazy, a desk that isn’t in my house.

Tomorrow I go for a routine, previously scheduled checkup with Dr P. I’ll let you know.

That was interesting

It is April 2nd and if you didn’t check the calendar as you read yesterday’s post, you must be worried about me! Ha ha ha!

So, to recap, I’m actually not capriciously going off my meds in favor of cigarettes. Seems really preposterous when boiled down to just that one sentence, right? I never thought I’d actually fool anyone! Least of all my caregivers. (When I go to Dr P’s office for a checkup on Tuesday, I am a little worried they will pelt me with eggs.) FYI, I don’t do “daily cognitive exercises,” either, because it’s all I can do to get out of bed, most of the time!

What I didn’t mention yesterday, because the day was given over to my little prank, is that I saw Dr D, my ophthalmologist, and the pressure in my eyes is way, way down and I am now completely off any kind of eye drops. I’d already stopped the steroid drops a month ago, and was using beta blocker drops to help lower the sky-high pressure caused by the steroid. Finally. 20/20, decent vision, can wear my contacts again. Yes, the floater is still there. It will be there indefinitely. I can deal. I feel really good for having advocated for myself to get off the steroid drops, even though I had no control over how things would go. When you’re at the forefront of a treatment that has been approved but experiencing side effects of the 1% (of patients in the clinical trial), you have to be a maverick, sometimes.

And without my daily reminder of eye drops, my meds app is no longer ruling my life as much. Feels good. I am still trying to get out from under the shitty cold that derailed my training for the big bike ride before it even started, but I’ve got time. Somehow, even though I’ve been eating very badly this week on account of my cold, I’ve been losing weight. That can only help when I get back on the bike at last.

Our Italy trip is taking shape, the calendar filling up with places we’ll stay. I told J this morning that the trip, and the bike ride that comes a few weeks before it, have suddenly raised the stakes for my next scan, which comes in late May.

Now that I’ve acknowledged this, it will be all I can do to try to ignore it. I’ve posted this poem here once before, but I’ll post again just to remind myself.

How to Meditate
by Jack Kerouac
                      -lights out-
fall, hands a-clasped, into instantaneous
ecstasy like a shot of heroin or morphine, the gland inside of my brain discharging the good glad fluid (Holy Fluid) as i hap-down and hold all my body parts down to a deadstop trance-Healing all my sicknesses-erasing all-not even the shred of a “I-hope-you” or a
Loony Balloon left in it, but the mind
blank, serene, thoughtless. When a thought comes a-springing from afar with its held-forth figure of image, you spoof it out, you spuff it off, you fake it, and it fades, and thought never comes-and with joy you realize for the first time
“thinking’s just like not thinking-
So I don’t have to think

Prepare For Major Changes

It’s undeniably spring, now. The temperature this morning is 70 degrees. A new month has started. Time for a fresh start! Detox!

It will perhaps surprise some of you that for quite some time, I have been harboring great misgivings about my cancer treatment. I previously posted a video which revealed the unspeakable packaging waste that Big Pharma imposes on its customers who receive their refrigerated medications by mail. And I have written at great length about my treatment’s real (and imagined) side effects.

This morning, in the process of doing the daily cognitive exercises I have undertaken to sharpen my brain since having the gamma knife surgeries, I recited my name, date of birth and passport number correctly, but when it came time to recite the alphabet, I found myself saying the Hungarian alphabet. Backwards.

So, today I set up a conference call with all of my doctors: Dr. P, Dr. K, Dr. D, Dr. S, Dr. T, and for good measure Dr. Z (whom I have never actually met, but who seems like he would understand). I informed them that I am leaving their care to pursue plant-based treatments which I believe will make a big, big difference – because plants grow from the ground. They wished me well, by which I mean they did not object, I don’t think, because there was silence on the line.

Until my patent has been approved, I am not at liberty to discuss the nature of my new plant-based remedy, which, broadly, is composed of leaves from a New World crop (I really can’t say much more). I hope you’ll trust me when I say it’s a major disruptor. It’s too much to explain in a blog post.

I have been experimenting with a variety of delivery methods for my customized plant-based treatment. Pills are obviously well tolerated, but it is hard to grind up leaves and stalks into pill form on the artisanal micro-scale I am doing it… and of course, you need a water source close at hand. That is not always possible. Suppositories are another possibility, but not exactly my first choice. (I know I have discussed menstruation here, but when it comes to suppositories, I can be quite demure.) Intravenous administration is too troublesome.

So I have come up with a prototype that I think gets around many of these issues. It is based on a historical, now disparaged design, but I think it has a lot of merit. For one, it is biodegradable. It is compact, and can be shipped unrefrigerated in cartons which then can be slipped into a pocket or purse for transport.

I’ll be sharing more in coming days about my groundbreaking work in this area, but right now it is time for my next dose, so I need to step outside. I’ll leave you with a marketing poster I’ve been working on with a designer friend.

1969 Ad, Salem Cigarettes, Young Woman In Meadow with Flowers, posted by Classic Film on Flickr, licensed under Creative Commons

Happy April!