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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 Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.
This dispatch falls into four distinct sections. The first is the time from the time I wrote the last dispatch until the neutropenic fever hit (June 19 - June 24). The second section is my return to the hospital to deal with the fever and other problems (June 24 - June26). The third is from the time I returned home until June 30 when I had my pivotal CT Scan (June 26 - June 30). The forth covers that pivotal day (June 30). To go directly to a particular section, click on the corresponding dates.
I was fortunate to be taken out sailing twice by friends on other boats. Being close to the solstice and being so far north, the sun wasn't setting until well after 9pm, enabling a wonderful sunset sail after our friends' workday. We would have liked to have taken Volant out but with my condition it was proving to be just too much. But being out on the water on any sailboat was rejuvenating and refreshing. I treasure those few short hours, although they were also tiring. I'd do it again in a heartbeat.
This was also a period where I began to notice changes in my body.
Energy-wise, each day was a downward spiral. Something that was easy on one day would be difficult the next and practically impossible beyond that. Walking the 615' of dock (205 yards, or 186 meters) from the boat to shore was a simple task the first day, but required several stops for rest at the lowest point. In the beginning my energy would be pretty good in the mornings. Toward the end I'd have to have a nap before there'd be enough energy to eat lunch.
There were other interesting changes as well. Food-wise where I thrived on Popsicles, this time I couldn't stand them. And I began to crave fresh-cooked spinach. In fact the only food that was appealing was the spinach. Everything else tasted pretty yucky. I really didn't want to eat. I ate only because I had to.
And the hair on my body was getting thinner. I never lost anything in clumps as I've so often heard it described. Shaving is becoming a faster routine, as it takes fewer and fewer passes of the electric shaver (blade shaving is forbidden) to accomplish the same result. My eyebrows are definitely thinner. And there's no nose hairs lining my nostrils to filter out dust.
My skin looks older and my face looks much more tired than ever. For the first time in as long as I can remember, I feel like I'm my age and not maybe twenty years younger. Looking in the mirror there's this old guy, definitely a stranger. If the mirror weren't so strategically located, I'd avoid it entirely.
Sleep has become increasingly difficult in this period. Partly that was due to the steroids I had to take. Partly it was due to the mucus lining of my nasal passages getting thinner and uncomfortably dryer, which gave me the sense that I was nearly always somewhat congested in the daytime, a bit worse when lying down for a nap. I'd often find myself at the computer in the wee hours responding to well-wishers' messages or researching leiomyosarcoma on the Internet. As I start to write this dispatch it's 5am.
I was also much more aware of my own vulnerability, which kept me in a much more emotional state. A simple message of "we're with you" from someone I didn't even know would be cause for tears. One friend sent me a tee shirt with the message "At one time it was thought that the world was flat, and that if you sailed far enough you'd fall off the edge... Cool!" Receiving it was cause for much pleasurable laughter, and I wouldn't take that shirt off for two days. I might not have enough energy to receive a phone call from a well-wisher, but when Kit related its substance to me afterwards I would often be left with wet eyes.
As the days progressed to the low point in my blood counts, I was required to check my temperature at least twice a day. Any fever was cause to increase the frequency of the temperature check. The magic number was 101.3°F (38.5°C) - automatic admission to the hospital. My temperature began going up on Thursday morning, causing hourly checks. As they day progressed it climbed faster. At late Thursday afternoon my temperature was 100.3°F (37.9°C), and only an hour later it hit the magic number.
My blood counts had reached their nadir. The neutrophil count was only .30k/unit (only 30 when normal minimum is 1,700/unit), the same as it was when I was admitted last time.
Again there were massive doses of antibiotics and antifungals. A series of blood tests could find no external source for the infection, indicating that I was being infected by my normal body flora and fauna.
As part of the admission and discharge procedures I was weighed. I was in for a bit of a shock. I started out at the beginning of Cycle #1 at 250 lbs. (113.4 kilograms). On my discharge this time I was only 240 lbs. (108.8 kilograms). This was in spite of being bloated from all the intravenous (IV) hydration I received, plus all the food I ate even when I wasn't hungry. With the overeating I actually expected to have increased my weight over this period. Hell of a way to loose weight...
The mouth sores started again while I was in the hospital. Morphine on Saturday morning enabled me to eat breakfast. But it also made me quite drowsy, causing me to miss most of the day. The fever began coming down after peaking at 101.7°F (38.7°C).
When I came into the hospital I was also suffering intense stomach pains. The doctors suggested that it was a problem with too much acid. It seems that the entire intestinal tract is looses its entire lining during chemotherapy, and takes many weeks for it to rebuild. I haven't had enough time for it to rebuild, so now my entire tract is pretty thin. With the normal buildup of hydrochloric acid (HCl) causes extreme discomfort. So I learned that from now on I will be taking pills daily to limit the HCl in my body at least until Cycle #6 has been completed for a while.
On Saturday morning my neutrophil count was up to .58k/unit (580/unit), still neutropenic but high enough that the doctors felt that I would be able to return home. But they were now concerned about my red blood counts. They recommended a red blood transfusion. To this I agreed.
It takes nearly 4 hours for a proper "type and cross" check to insure that the new unit of blood would have a minimal chance of creating problems for me. Once that was done the selected unit had to be hand-carried to my room from the laboratory to minimize the chance that the wrong unit of blood would arrive at my bed. It was late afternoon before the first unit arrived.
Before connecting the blood to my IV line, two nurses had to check and confirm the labels on the blood, on the attendant paperwork and on my hospital ID wristband all had the same person in mind. Part of the check was to insure that the blood product delivered matched the medical order written by the doctor. My nurses were very, very careful. For which I am extremely grateful.
Vital signs (temperature, blood pressure, and pulse rate) were checked before the first unit was connected. This was to be a base line set of vitals. Any allergic reaction would likely show up there if it didn't show up earlier in the form of itching, watery eyes, difficulty breathing, rash or other typical reaction. And it would show up within the first 15 minutes if it were to happen at all. So a second set of vitals was taken 15 minutes after the blood entered my system. And there was to be a third set taken at the end of the unit. I had two units infused. The base line for the second unit was the final set of vitals for the prior unit. I passed all with flying colors.
At 9pm I was on my way home.
I was still pretty tired, but each hour brought a bit more energy. Returning from the hospital and walking back to the boat from shore the first time was a chore. Going out on errands a day later I didn't have to stop once to rest. And the following day it was a snap.
Friends arranged for the loan of a wheel chair to use on the next chemotherapy cycles when my energy level warranted it.
The worst thing is waiting for the results of the CT Scan. There are three possible outcomes. First, the scan shows that the three nodules in my lungs are smaller or have disappeared. Second, the scan shows essentially no change. Third, the nodules are larger and/or there are more of them.
The first outcome is the very, very best. It shows that the chemotherapy is working really well. In this event we'll keep running the same protocol as it's obviously working, and working well. The indication in this case is that eventually all the nodules will disappear by the end of the six cycles, eliminating the need for surgery to remove whatever is left. From what I've read about metastatic leiomyosarcoma this outcome is rare.
The second outcome is more likely. On the surface it may appear to be an inconclusive outcome. That may be so, but it's not bad news. The scan cannot tell whether the tumors are live, dead (necrotic) , or somewhere in between. Even if they are all fully alive the chemotherapy has, at the very least, has arrested their growth. The indication in this case is that any loose cancer cells have been or are being killed off. If this remains the case at the end of the six cycles of chemotherapy surgery will be required to remove whatever remains of the nodules.
The third outcome is just as likely as the second. This is not good news, and is the one that causes me the most anxiety. This means that the most aggressive chemotherapy protocol for my case is not working. Other options will have to be explored. Most options involve choosing another treatment protocol, and there's always the option to end treatment and make other plans.
The source of the anxiety here is just not knowing. Once I know the results, whether outcome one, two or three, I'll have a course of action laid out that I can jump into with all my usual enthusiasm and energy. While I'm in the don't know state there's nowhere to direct my resources.
For now, it's wait and see. And it's killing me, not knowing.
This morning we had the CT Scan and met with the doctors to go over the results. You recall from Section #3 that there were three possible outcomes. And the test results were (drumroll)...
Well, at least the not knowing is over. So we will continue with the same infusion protocol. Cycles #3 and #4, followed by another CT Scan are confirmed actions. If things are again the same then we'll do Cycles #5 and #6 followed by a third CT Scan. If that final scan shows any nodules at all, surgery will be required to remove them so that they can be examined under a microscope to determine exactly how well the chemotherapy worked.
So now it's time to turn my attention to the coming weekend. We hope to be out on the water for the viewing of some of the significant fireworks displays which are produced in the area. Perhaps we can do it aboard Volant. But those plans will be made after I get this dispatch posted.
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