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You are welcome to apply any part of this article to your own personal use. Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.
Well, it's 0400 and I'm not sleeping. I have a goal to get this written and posted today. It'll probably take several sessions with naps in between, but it'll get done.
I'm out of the hospital again, having just completed my third round of chemotherapy infusion. I got out Saturday morning (July 10), just in time to participate in a weekend-long conference on cancer. More on that later.
Physically, there's not too much to report. My hair is thinner over most of my body. My eyelashes are almost gone. I haven't shaved in a week and no one can tell, not even me. I think I still am looking older, but it doesn't seem all that bad.
This infusion cycle was easiest so far. I had a few hours on Thursday afternoon where the nausea got to me. My big concern was that I'd have a recurrence of the intense stomach pains of the past two cycles. This was effectively prevented by taking medication over a period of time to reduce the amount of hydrochloric acid (HCl) being generated by my system while my stomach lining was so stressed by the chemo.
The stomach pain was replaced by some random hiccups and gas. The hiccups are pretty strong, but not very frequent. I rarely have more than two or three at a time, and then maybe that'll happen every couple of hours or so. Eminently liveable. The gas comes mostly in the form of burps. These burps sound to me like someone has drunk too much beer too fast, and I'll have one or two every few hours - more around mealtime. The remaining gas comes in the form of "afterburners." These are fortunately not too odoriferous, and are mostly pretty silent. Whether burp or "afterburner" there's little warning and little I can do about them except apologize when in company.
I did have a wonderful visit from a sailing colleague and his wife. Visiting with friends really brightens up a normally dull day. The burps, hiccups and "afterburners" were minimal. I don't think they noticed.
Medical professionals are big on scales that can be rated from zero to ten, with zero being a good number and ten being the bad number. "How's my nausea?" they'd ask me, looking for a number that would communicate to them how I'm feeling. On Thursday it was a level-four, with the thought of eating anything pushing me into a level-five ("Don't bother eating because it's just going to come back up anyway."). The drug they gave me to control the nausea has a side effect, namely an altered state of consciousness (the patient wants and needs to sleep). I did, and when I awoke several hours later the nausea was down to a level-one.
This prompted a visit by one of the resident doctors. It seems that in Washington State and a few other states, marijuana can be prescribed for medical reasons. One of those reasons is for nausea in cancer patients. What a concepth... getting high legally.
But there are a few gotchas in there. In Washington I can legally smoke marijuana with a prescription but I have to buy it from someone who cannot legally sell it for any reason. So to acquire my prescription I have to risk an illegal purchase. But there's a further difficulty that's much more serious. Federal Law preempts state law in this country in many areas, and Federal Law has no tolerance for marijuana. Consequently if I'm sailing on a Federally regulated waterway and am boarded for a "safety inspection" by the U.S. Coast Guard, they can seize my boat if they find any trace of marijuana or marijuana products or paraphernalia. And I cannot leave the marina without going into one of those Federally regulated waterways, namely Puget Sound. That doesn't sound like a good idea to me.
There's a pill form of marijuana. It must be taken at least 24-hours before starting infusion and for a period following. But it contains the active ingredient and not the fun part, so one would not get high on this. But again Federal Law presents a problem. Whether the Coast Guard can seize my boat is in the gray area of the law. But to renew my U.S. Coast Guard-issued Captain's License I must declare that I have not used marijuana in any form. Making that declaration would red flag my application and probably lead to a refusal to renew. No, that's not a good idea either. I guess I'll just have to forego the option.
The "not sleeping" right now is mostly due to the steroids I have to take to mitigate the side effects of my chemical "soup." The "soup" will continue to be in my veins attacking fast-growing cells for another maybe five or six days. I'll continue taking the steroids for maybe two more days. They're not needed longer than that as the "soup" slowly works it way out of my system the side effects diminish.
I can usually tell the difference with my sleep under the influence of steroids. The most noticeable difference is that there's no twilight zone when falling asleep or waking up. I'm either asleep or I'm awake with nothing in between. So when I wake I'm instantly awake and not aware of having been asleep. I only know I've slept by checking my watch and by feeling how tired I am. I wake frequently at night, often due to bladder considerations. When awake at those times my mind is active and often going over such things as how to write this article. If I don't go to sleep within a reasonable period I might as well get up and do something as long as I have the energy to proceed.
I'm about to go into a discussion that some might find uncomfortable. To bypass it, click here.
How do you like that phrase, "bladder considerations?" It's usually not something that one would hear in a normal conversation with a friend. "Hey, How's your bladder doing?" "Oh, just fine. I peed three times today so far." Yet for my chemotherapy it's something my nurses were very interested in. Not only did they want to know that I was voiding my bladder, they wanted to know how much urine each time. And they wanted to know if there was any blood so they would test each and every "sample."
To collect these "samples" I had to use a urinal. This was not a big porcelain fixture on the wall of the bathroom. It is a bottle about one half liter in volume shaped something like a banana with a cap over the opening. It's very convenient for males, not too workable for females.
It's especially important at night. The chemotherapy infusion loads a bunch of bad stuff in my veins that has eventually to get out. That's through the bladder. And if my bladder isn't voided regularly enough the "soup" can do some damage in there. If I voided not so often during the night because I was sleeping, I could be doing some serious damage. Doctors in their infinite wisdom have determined that feeding a lot of saline solution into the veins at the same time helps the bladder get full repeatedly, hopefully requiring sufficient voidings that bladder damage is avoided. This also explains why the nurses are so interested in my uric production.
This little bottle is a boon for nighttime. With all the saline going into my body during infusion, I'd have to pee maybe 6-8 times each night. Back at home aboard Volant I still have to drink a lot of fluids for flushing as the "soup" eventually works itself out of my body. As long as the "soup" is in me, I have a large glass of clear something, usually watered down juice or similar product just before going to bed. Then in the middle of the night I usually wake up enough to drink another glass. So at home I'm up to pee at least three times, often four or more times for the first week. Then I can ease it up somewhat.
With a bit of practice and a handy dandy little urinal a guy can go to the bathroom at night without getting out of bed. This is especially important at those times when my energy level is too low to get out of bed to do anything, including peeing. That means that even though I'm wide awake instantly, by not getting my muscles functioning to take me to the toilet, when I'm finished I only have to put the bottle down and roll over to be ready to return to instant sleep.
It's not as easy as it seems, however. I've got nearly 60 years of toilet training screaming at me as I attempt the trick. NO, YOU'RE SUPPOSED TO BE IN AN UPRIGHT POSITION... YOU'LL WET YOUR CLOTHES... YOU'LL WET THE BED... YOU'LL EMBARRASS YOURSELF... You get the idea. Opposed to the screams is the gentle voice of the enlightened man. Actually, it's okay to be lying on my side. No, I won't wet my clothes. No, I won't wet the bed. No I won't embarrass myself. You get the idea. To pee I have this argument going on in my body. Relax, bladder. It's okay to go now. NO, WRONG ATTITUDE... Just relax so I can go. NO, YOU'LL WET... Just relax... NO... It's okay. Just relax... NO... But finally the bladder muscle responds to reason and a warm fluid starts down the path. But wait! We're not done yet. In males there's another muscle involved, the prostate. When he senses the warmth he screams back to the bladder. HEY, SHUT IT DOWN. YOU'RE NOT IN THE RIGHT ATTITUDE... YOU'LL WET YOURSELF... and so on. So the prostate forces most of the warmth back up into the bladder and the bladder shuts down. And now the bladder screams again. SEE, I WAS RIGHT... YOU CAN'T DO THAT NOW... YOU'RE IN THE WRONG ATTITUDE... YOU'LL WET... So now there are two screamers against the voice of enlightenment. After a couple cycles of this, eventually the bladder keeps going and the prostate, the only block, gives up reluctantly. OKAY, IT'S YOUR FUNERAL... Finally there's the sensation release when everything relaxes and the warm fluid begins its flow. It's almost orgasmic.
I can't believe I just wrote a whole page on peeing in bed.
I found it to be a very useful gathering. It didn't focus on medicine. Rather it focused in healing. Most of the speakers were humorous, all offered inspiration. If you or yours are involved in cancer as either a patient or a caregiver, do yourself some good and attend a conference put on by these folks at your first opportunity. Check out www.healingjourneys.org.
There were a lot of one-liners that I could share with you here, all of them meaningful to me. Most cut directly to my own internal process in dealing with the disease, and perhaps that's why I sat up and paid attention. There's the arena of who I am and my purpose in being on the planet right now. There's the concept of talking to the cancer to thank it for its gift that I'm just embarking upon. Then there's just sitting and listening to the quiet and discovering what there is to hear. And others... But I've written a lot already for this dispatch and it's too soon after the conference to integrate it all or to be able to speak about it in any kind of conscious organization. So I think I'll save this for another dispatch.
Until then, fair winds and good health to you all.
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