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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 Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.
Hi all,
Here's a brief update on the treatment for my leiomyosarcoma...
I started radiation treatment last Tuesday. I get two treatments each business day, 6 hours apart (9am & 3pm), for 21 consecutive business days. My last scheduled treatment is January 2. I'm having treatment at Bathesda Hospital in Boynton Beach, Florida, about an hour's drive north of Ft. Lauderdale. After the radiation treatment I'll have about a 3-week break before the surgery to remove the mass. I'm feeling fine, except for the tiredness. We've moved the boat to Delray Beach, much closer to the hospital so we don't have 2 hours of traffic to deal with each day.
For more details, read on...
The treatments take about 10 minutes, total, including the setup time. I get zapped 3 times: twice about 7 seconds each on the left side and once about 15 seconds on the right. There's no pain, discomfort or other sensations during the treatment. Afterwards I slather the affected part of my leg with aloe gel, as one of the effects of repeated treatments is radiation burn, similar to sunburn.
I guess I have to avoid holding light bulbs for the time being... I might light them up.
To insure that they always zap the right place each time, I have about 5 needle-point-sized tattoos in the corners of the region being treated. The radiation therapists use a special ink to draw on my leg, using the tattoos as reference points. After a couple of showers the marks are gone, so the therapists refresh the marks practically every day. I go in wearing shorts, so I don't have to change into one of those glamorous hospital gowns. Consequently, everyone in the world gets to see the marks.
The area being irradiated is much larger than we expected. It goes from the middle if my hamstring (back part of the thigh) to the middle of the calf. Leiomyosarcoma seems to have a habit of sending out satellite cells to develop their own tumors. These satellite tumors develop somewhat close to the original. The radiation works on those satellite cells. By zapping the large area, we attack whatever satellites might be developing. Before radiation treatment was developed, the only recourse was to remove the entire region of tissue. In my case that would most certainly have resulted in amputation above the knee. As it is they will still be removing some "safe" tissue, but only enough to be sure that there's no "spillage" from the original mass.
Kit has threatened to draw little sailboats, palm-covered islands and the like on my leg using that special ink. But the therapists think the computer would get confused, so I'm keeping that special ink out of her hands.
Mondays are "Doctor Days" where the doctor reviews everything and makes any adjustments that are warranted. They also draw blood samples for the lab on "Doctor Days" to insure that the radiation is not adversely impacting me. I haven't had a "Doctor Day" yet. The radiation therapists say that I will grow to hate "Doctor Days" as there's a lot of waiting around for the doctor to make an appearance.
Two of the radiation therapists are very competent, personable, and pretty women. It's a lot of fun to interact (flirt and joke) with them. The third is a very quiet male who is there for some of the treatments. I try to joke with him, but he doesn't interact with me all that often.
Symptoms? As mentioned earlier, I'm getting very tired very easily. That means I'm sleeping the usual 8-10 hours each night, then often taking a morning nap in addition to an afternoon nap. I'm in good spirits (attitude is everything!), but find it difficult to focus on much of anything for any period of time. As much as I love reading, it just takes too much energy to read even a simple mystery novel. Videos and movies are okay if they don't require too much thinking about what's happening. I do enjoy being social, and look forward to interactions (whether face-to-face or by phone or email) with neighbors, friends and family. But sometimes I "hit a wall" and have to go down for a nap.
Because of the distance to the hospital, and because travel is so tiring for me, and because we live on a boat and can do this relatively easily, we've temporarily moved our home to Delray Beach. The new location is right on the Intracoastal Waterway (ICW). It's about 10 minutes to the hospital, about 3 blocks from a lovely downtown shopping/restaurant district, and a short distance to the beach. We'll be keeping our Ft. Lauderdale dock (& mailing address), so we will move back when the treatment is finished. We completed the move today (Sunday).
Kit has been fabulous. She's been doing all of her normal chores, plus doing my normal chores whenever I'm too tired (which is virtually all the time), plus doing all the driving. It's wearing on her. The move to Delray Beach should help a lot. We've had friends and neighbors help get the boat ready (take down the awning system, move things to storage, finish up a painting project, etc.) and had other friends crew for us when we moved the boat.
One thing that has helped a lot is the "Wellness Community." It's an organization with about 20 locations in the U.S. plus 2 outside. They provide free support and services to cancer patients and their families and care-givers. Kit has already gone to a group support session for care-givers. We've both done Chi Gung (a Chinese movement therapy for cancer patients, several thousands of years old, similar to Tai Chi Xuan) and "Guided Imagery" (a guided meditation to support healing). I've had one session of Reflexology and one of Reiki. There are other programs as well, but so far they've been offered when I've been having treatments. Those I've had all seem to work in the sense alleviating the tiredness to a noticeable degree. I was beginning to notice a bit of nausea which is supposed to be one of the side effects of the radiation treatments. But after my first program at the Wellness Community, it disappeared. It wasn't around enough to say that what I had was from the radiation, but the symptom was alleviated anyway. You can be sure I'll be signing up for as many as I can handle each week.
I guess that's all for now. More will follow when there's more to say.
Fair winds,
Capt. Edmund "Bear" Downing, the "Atomic Man".
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