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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 Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.
Eleven years ago we were buying a boat. Plan "A" was to find her in the Pacific Northwest, do a shakedown up to Alaska then head out westward until we got tired of going west and decided to go in another direction. When we found the boat she was in Florida, calling for Plan "B" - if we were on Plan "A" and went far enough westward we'd be on the Eastern Seaboard of North America, so why not cruise that region since that's where we were? After nearly a decade of Plan "B" it was time to go back to Plan "A." So we shipped the boat to the Pacific Northwest and started cruising that region. A couple of years ago I had a too-intimate relationship with cancer in my left leg. My team got it all, or so it seemed. I went in for my quarterly check-up as a final clearance before crossing over into Canada on our way north. Oops... The cancer had spread to my lungs. That meant an immediate switch to Plan "Z" - the last plan anyone would want to choose.
Let me back up a bit and talk about the cancer itself.
Sailing with friends on their boat in Sweden the summer of 2002, I started noticing a kind of bump just below the crease at the back of my left knee. In the beginning it felt like an uncooked pea was jammed behind my knee as I would squat while working on the boat. By the time we returned home it felt more like a child's marble. Most mornings back home we'd walk along the Ft. Lauderdale beach. About half way into one of those walks the lump started throbbing. And by that time it felt more like a golf ball was jammed behind my knee. Whatever it was, it was getting bigger. Time to get it checked out.
The short version of the story is that in November, 2002, I was diagnosed with a "high grade" (very aggressive) soft-muscle tissue sarcoma, called leiomyosarcoma. The body is loaded with soft-muscle tissues. These muscle cells cannot be controlled by conscious thought. Think of goose bumps. Think of the elastic lining of blood vessels to keep them from bursting every time the heart beats. My sarcoma originated in the lining of the blood vessels feeding the sural nerve in the back of my left leg. The sural nerve controls feeling in the skin at the back of the calf and along the outside of the foot.
In December I underwent radiation treatment twice a day for 21 consecutive business days. After a 3-week rest the surgeon removed the mass, the portion of the sural nerve that was involved and some additional surrounding tissue to insure a "clear margin." That was on January 22, 2003.
The odds were 1 in 20 that the sarcoma would recur, and 1 in 4 that it would metastasize (spread). It is the nature of my particular sarcoma to go straight into the lungs whenever it goes metastatic. So my follow-ups were to be alternating between CT scans and x-rays of my lungs every 3 months for 2 years. After that it would be every 6 months for another 3 years. After the 5th year of being clear, I'd be considered "cured."
My 1-year anniversary on January 22, 2004 was a celebration. The X-ray was negative. The MRI of my left leg revealed no evidence of recurrence. Our Alaska plans were firmed up. And we left on that cruise (see: Pacific Northwest Cruise 2004). I only needed to come back at the end of April for my quarterly check-up, a mere formality.
The quarterly check-up, due to scheduling considerations, was delayed until May 11. And that's when the doctor hit me between the eyes. The CT scan came back positive, showing 3 nodules. Each nodule is about 1cm. in diameter. Two are in my left lung. One is in my right. They were most likely seeded before my radiation treatment the previous year.
The choice was between chemotherapy and making plans for a severely curtailed life. I chose chemotherapy. I chose Plan "Z."
There are 3 possible outcomes with chemotherapy. First, it works and the cancer is killed off - in which case I get to go back to Plan "A" after about a 9-month delay. Second, it sort of works and the cancer is controlled but not stopped - in which case I'd be in chemotherapy for the rest of my life or until something changes. And third, there's no effect - in which case I make other plans. They've told me that the odds are about 1 in 3 for each of those outcomes. In reality it's going to be either 0% or 100% on whichever outcome shows up. If I had those odds I'd be playing the lottery every day. So now I get to play a different kind of lottery, one in which I have some say in the outcome.
For what it's worth, I'm actually fine with whichever outcome shows up. If it's the first one, I get to continue living my dream. If the second shows up, I can hang in there with my family and friends until something changes. If the third shows up... Well, I've had a great life. I've lived my dream. I've a super partner who has shared this life with me, three fabulous children, three very special grandchildren and some of the most wonderful friends anyone could ask for. There's still time to experience some more cruises before I'd be forced to slow down. And for me, death is merely a transition to whatever is my next adventure.
My preference, obviously, is for the first outcome. And I've actually got a lot going for me which will improve those odds. I've got excellent health, a positive attitude and a great network of friends and family standing behind me and sending out intentions that I beat this. My medical team is first rate, and I have a lot of confidence in them.
The aggressiveness of my cancer is both good news and bad news. The bad news is that it's so fast-growing. The good news is that chemotherapy targets fast-growing cells, so we have a better chance of killing the cancer cells which also improves my odds.
My treatment will be very intensive, matching the aggressiveness of the cancer. The current plan calls for one treatment cycle (5 days in the hospital) every 3 weeks for 6 months. My first cycle starts on Monday, May 24. Every 2 or 3 treatment cycles they will check out my lungs to see how things are going, and will adjust the chemical "soup" accordingly for the next 2-3 cycles.
A couple of days ago Kit and I spent about 2 hours with my case nurse to learn about my particular treatment and what to expect.
There's more, all in a thick 3-ring binder. I'll read all the nitty-gritty details before the end of my first cycle.
To facilitate the blood tests and infusion of the chemicals I have a Hickman Catheter installed into my body. At first I thought I'd be having a "port" installed. A port is a "button" placed under the skin and connected to a major blood vessel. Placing a needle through the skin into the port is much easier on the body than placing it into a vein. But my particular "soup" is very caustic to the skin, making ports problematic for me. A Hickman Catheter is a port, but instead of a "button" it has a line going through the skin with two external connectors for hooking up to syringes, drip bags and pumps. That was installed yesterday by Dr. Hickman himself. I figure that after practicing on over 6,000 patients before me that maybe he got it right. It was a relatively comfortable procedure.
I can wear civilian clothes in the hospital, as long as I wear a shirt with enough of a neck opening that the Hickman Catheter connectors can be readily accessible.
I'll be using the Hickman for the duration of my treatment, or until something changes. Sometime during my first infusion my wife Kit and I will be taught to flush the Hickman daily, a simple enough procedure. The first flushing was done today by a nurse. From that we can see that I'll be leaving the hospital with a good-sized box of equipment (non-reusable) and fluids for flushing. I expect that Volant will shortly have enough pharmaceuticals aboard to go into competition with Walgreens.
Kit and her brother Keith brought the boat back down to Seattle. We are now living aboard Volant in a permanent slip there. It's about 20 minutes from the hospital where I'll be receiving my infusions. It's also close to the kids, grandkids, in-laws, out-laws and friends for the heavy-duty personal support that is so very important in my treatment.
So my job right now is to go into Plan "Z" with both eyes wide open, to take whatever comes my way in stride and never waver from my focus.
Mr. "C" be warned! You're in deep doo-doo!
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