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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 Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.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, I made it through the first infusion and am back aboard Volant. If everything goes well from here on out I have only five more infusions to go, one every three weeks.
So how am I right now? I'm actually feeling pretty okay with it all. I have some energy and I have a positive outlook. I've taken some pretty hard shots and am still standing. And I'm appreciating every second of every waking moment. Do keep that in mind as you read further.
Appreciating every moment is something that I've heard that happens to folks who have the opportunity as I do to face a life-altering circumstance full on. Lance Armstrong in his book "It's Not About the Bike" talks about being one of the lucky ones, about having cancer and confronting his own life experience from within that framework. I don't understand it fully myself yet, but am beginning to go through the experiences that will allow me to arrive at that point somewhere down the line. But for now I'll just appreciate every waking moment.
On Monday morning, May 22, I met with my medical oncologist at the Seattle Cancer Care Alliance to make sure I was healthy enough for the week's infusion. This will be repeated with each cycle, deferring the infusion if needed. For Cycle #1, I was ready.
We went to the hospital (University of Washington Medical Center), checked in and got hooked up. Yes, I could wear my civvies (civilian clothing) instead of those horrible hospital gowns. I have to say, that improved my outlook immediately.
Hooking me up was akin to assembling a tinker-toy contraption with a lot of flexible tubing instead of sticks. I'll be getting into some details that some might find uncomfortable. If you'd like to skip the next part, just click here.
My Hickman Catheter has two ports. I started out needing about four continuously-connected drip lines, eventually needing 6 fluid-bags hanging at once. Plus I needed one port for drawing blood samples. So the first thing they started putting on were y-connectors to split each of the two into two more ports. As they needed more lines in the days that followed, they just added splitters to the splitters and went from there.
Let me back off a bit and explain something I learned about the infusion chemicals. Each fluid, whether plain saline solution, saline with electrolytes, chemotherapy or medication is a solution with a number of chemical salts. Each fluid has it's own pH-level. If you recall from your basic chemistry class, if you have a solution with one pH and adjust the pH either up or down you can cause some solids (crystals) to precipitate out of the solution. By stirring the fluid (keeping it in moving) you can delay the precipitation process. Consequently when hooking me up, they want none of the tubes to mix unless the fluids were known to be compatible (no precipitates when mixed). Having some crystals precipitate out into the lines could clog the lines is bad enough. Having some crystals precipitate out into the blood stream could really ruin my day. Once the fluids get to the Hickman Catheter the lines are so narrow that the fluids flow relatively fast (only a second or two before they're in the heart being pumped throughout the body, which keeps the solutions moving fast enough to minimize precipitation. Consequently I had a lot of drip-lines connected into my chest.
My first chemotherapy drug to be hooked up was what I describe as my "Jonestown Kool-Aid." It looked just like orange-flavored Kool-Aid! And if I were to drink it like those unfortunates in Jonestown did, I'd suffer similar results - it's very, very toxic.
My second drug was clear and even more toxic than the Jonestown Kool-Aid. To change a bag the nurses have to wear special protective clothing, including special gloves. One drop on the skin would cause a severe burn. ...And they're pumping this stuff directly into my blood! I could come up with no nickname for this one. So it's just my "ifos" (pronounced EYE-foss, short for Ifosomide).
One of the fluids was simple saline solution with electrolytes. I called this my Gatorade. It's clear, just like the Gatorade Ice-flavored beverages and just as similarly constituted.
The "fun" one was a blue dye. After the ifos was done (2 hours), the chemistry needs to be filtered out of my blood. The blue dye interacts with the ifos chemistry, binding the chemistry into a form that the kidneys can recognize and remove. Now, for as long as I'm in the hospital I need to have all my fluid intake and outgo monitored. They know how much fluid is going in, and I need to collect all the outgo (urine) for them to monitor and check. Each urine output would go into a separate bottle and placed on the shelf in the bathroom. Periodically a nurse would record the volume and check the contents for blood, etc. So I had a rack of bottles on the shelf, each with a different shade of blue when the blue dye was being dripped. It could have been a blue pallette for a watercolor artist.
I should mention that the staff at UWMC were superior. No matter how busy they were, they always seemed to find a bit of time to just talk, could always answer my questions and frequently went out of their way to make my stay as pleasant as possible under the circumstances. I can't say enough about how well they took care of me.
Once hooked up to my ifos and Jonestown Kool-aid chemotherapies (four drip-bags of each, one bag of each per day), Gatorade and other fluids, I just sat and waited. While waiting for the infusion I watched some television and visited with friends and family as they dropped by. The infusion bags were hung on a mobile rack and the pumps on the rack were battery-powered when not plugged into a wall socket. So I was somewhat mobile. They even encouraged me to walk around the ward or go down to the cafeteria or up to the patient's lounge. Just outside the ward there's another lounge with a table and a few chairs. One evening was spent with Kit's brother Keith playing 3-handed pinochle.
My room was private, with a view. It was a wonderful view of the end of one part of the Lake Washington Ship Canal where the Montlake Cut empties into Portage Bay in Lake Union. Unfortunately I didn't figure out until the last day how to raise the bed so I could see down onto the water. Mostly I could only see the mast-tops as they went by. I've requested the same room for my next cycle. So I'll have an even better view then.
The hospital food was actually edible. But after a few days of chemotherapy infusion my taste buds were dulled, so it didn't really matter. I needed food intake, so I ate what was there as long as it didn't turn my stomach. And some things, like scrambled eggs, just didn't even smell good.
My first knockdown occurred on Day 2. The ifos bag was to be hung once a day for two hours. I started having neurological side effects. I was having trouble balancing when standing up, and had difficulty understanding long sentences when talking. So the doctors stopped the ifos and pumped some stuff through my blood to remove the crystals that were causing the effect. It took a full 24-hours to recover from that knockdown. After several outside consultations the doctors and I decided to try the ifos over a 24-hour drip instead of a 2-hour drip. The effect on the cancer was likely (not guaranteed) to be the same; with the lower intensity my body should be able to handle the chemistry.
Some of the recovery required infusion with some steroid compounds (I guess that's going to keep me out of the Olympics). One of the side effects of the steroids is that it makes sleep difficult. So from this point forward I didn't get a lot of sleeping rest during my stay and for a few days longer until I can stop taking the post-hospitalization steroids.
For a while they interrupted the ifos drip every 6 hours with a 20-minute blue dye drip-bag to bind the excess ifos for filtering out by the kidneys. But that was pushing the 24-hour drip for Bag 3 into a 28-hour drip by the time the nurses had changed bags and flushed the lines. So for Bag 4 we sped things up so that all was completed in about 23 hours.
Because of the knockdown on Day 2 I wasn't finished with my infusions in time to go home on Friday. It was about 0200 on Sunday morning when we left the hospital for home with a shopping bag full of pills to control the known side effects such as nausea and constipation.
I had about 2 hours of sleep before I was awakened with a severe acid burning in my stomach. In minutes this turned into some heavy-duty vomiting. Knockdown 2. Too late for the nausea pills. Back to the hospital to be treated for what they called a delayed side effect. So it was finally Monday morning before I returned to the boat.
Before returning to the boat we stopped by the Seattle Cancer Care Alliance for a special shot, costing about US$3,000. This shot would boost my white-blood cell production over the next week or so. I'll have one of these after each cycle.
I should mention here that my health insurance is covering all this. I've already met my deductible so there's very little more I'll be paying for the rest of this calendar year. The insurance company gets to cover the bills.
Coming back to the boat was actually a chore. With the lack of sound sleep and the physical strain on my body caused by the chemotherapy, it felt as if I had just run a marathon race after only maybe a month of training. I was just physically drained of much of my energy. So it was with leaden steps that I walked the 200 meters along the dock from the car to the boat.
Once on the boat I crashed for an hour. Revived a bit I could have some lunch, which gave me enough energy to crash again for a couple of hours. This revived me enough to enjoy sitting in the cockpit and watch folks return to their docks after a long weekend.
Our new dock seems to be loaded with liveaboards that love to socialize. There was a barbecue that evening which Kit and I enjoyed very much.
So what's in store now for me? Once or twice a week I'll be going in to the Cancer Care Alliance for some blood tests to monitor my counts. My blood counts are coming down and will be at their lowest maybe Thursday or Friday. With the low counts come low energy and a susceptibility to infection. For the low energy I just need to do lots of resting. To catch infections early I'll be monitoring my temperature twice a day, every day. If I take it easy, take reasonable cleanliness precautions, avoid crowds and ill people, I should mostly avoid having to handle more knockdowns.
And I'm ready to handle whatever comes my way.
Oh, by the way. I did shave my head before going into the hospital. It takes a bit of getting used to, but Kit thinks it's kinda sexy.
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