Well, Round 1 of this little match between me and my #1 opponent of the year, Esophageal Cancer (EC) was a bit of a back and forth battle there for a while. I like to think of myself as a tough old buzzard, but there is just something about laying around for 5 days with constant infusion of cisplatin and 5FU that tends to take just a bit of an edge off a guy's game. OK, I'll admit that I may have over done it just a LITTLE bit going out 23-1/2 hours after leaving the hospital and doing a 65 mile ride with my pals, but thinking back, I wouldn't do it any other way. The weather was perfect, I felt really good and I took it pretty easy throughout the day.
What a difference a day or two made, though. On Monday, I rode about 25 miles and still felt pretty good,but by the next morning, it was all I could do to get off the sofa. The chemo had given me some pretty severe mouth sores which was making it difficult to eat. By cooking a big pot of oxtail soup, I was able to get something in me that was high calorie, high protein and actually was able to stimulate my appetite by cooking. Thursday morning, I took my bike out of the car in Renton, rode 3.5 miles to Starbucks and had to rest for a half hour before riding back to the car. I did take on one little challenging hill - a whole 70' "climb" to a water tower that left me feeling weak-kneed and out of breath. I went home exhausted and feeling very strange. I mean, REALLY!!! I'm a guy who has worked myself to the point where I can comfortably do a 200 mile ride and feel strong at the finish, enjoy a nice dinner and get up the next morning refreshed. Here I was barely able to get back to the car after 8 very flat miles. It was very confusing to my legs and brain.
The next week was somewhat better, as the sores went away and I could suddenly eat pretty much anything and everything I wanted. I managed to ride every day to my radiation appointments and I wasn't losing my hair or my weight. "Hell, there's nothing to this chemo/radiation stuff," I thought to myself. But I dreaded the next time I had to go through it, knowing I had 2 more weeks of daily radiation to go through, I'd been cautioned by the oncologists that this was going to produce the worst heartburn I'd ever experienced and I was going to be sunburned inside and out, in a lot of pain and that it was a cumulative effect. GREAT!!! Just what I always wanted to do.
DREAD. That was the big word. I had to overcome it. I've had some friends who have "bravely battled cancer", "lived with cancer" and all those other wonderful terms given to this shit disease that sneaks up on us from out of nowhere and takes over our entire lives....and I don't mean just the person that has the disease, I mean their entire families sometimes. I know I have to put on my "bravely living with cancer" game face. I know I have to remain positive and upbeat and have a good attitude because people with a good attitude survive better than those without. Well, I think this may be part true but is probably also part bullshit. Cancer is cancer and it kills its host. What a weird thing. An organism that can only survive by killing itself. My head spins some days with this garbage.
So Round Two was scheduled to commence on the morning of the 28th. It was now the 21st and I was at home DREADING having to go back into the hospital. I knew with certainty that I HAD TO change something and as I sat and pondered it I came up with an idea. If I could move from dread to acceptance and from acceptance to joyful anticipation, I could do this thing. No small task. How does one go about having joyful anticipation when they know they are going to voluntarily subject themself to injecting a series of poisons into their body that is going to, a) make them vomit their guts out, b) constipate them to the point they have to take all kinds of crap to make them crap that they never gave a crap about before and don't even want to think about much less ingest, d) leave them with mouth sores so bad they can't eat for days on end while people are yelling at them to get 3000 - 5000 calories every day, e) kill not only the bad boys in the body, but all those beautiful, strong, vibrant and hard earned muscles in the legs that have worked so well, f) turn the brain into cream of wheat, and g) leave the patient with the doubt that it is working at all. Dread was all that and much more. So I did some thinking about it all and came up with a couple of ideas. First up was how I was going to do this hospital visit.
I've been trying to make a charitable donation to them - a recumbent style stationary bicycle that would be able to be used by the patients. I'd talked to the nurses, who loved the idea. I'd talked to the Nurse Manager for the unit and found out I needed to work through "The Foundation", which made perfect sense. I gave her all my contact information, the make and model I thought might be appropriate (like I know anything about bikes, right?) and she was to have somebody from "The Foundation" get back to me. Have your people contact my people and we'll do lunch. That's about how it felt when I had not heard back from anybody in 2 weeks. Well, screw them, I thought. I'll just take my own bike in. This became my mission. I ran it up the flagpole with Josiah, who loved it. We plotted and planned. Weather has been pretty good. I'll hook my trailer up to the back of Katrina, put my suitcase with all my goodies in it aboard and load up my wind trainer. Now, I generally hate riding indoors, but thought under the circumstances, this would be better than not riding at all. So now I had at least one thing I could joyfully anticipate.
But that POISON!!! Those chemo drugs. There was that dread again.
Another little bike ride, some more exporation of the inner sanctums of the brain wherein all three remaining cells argue about which one is going to drive the bus today and came up with a new term, MAGIC ELIXER. I tried it on for size. It didn't fit at first, but the more I thought about it, the more sense it made. OK, so these are poisons, right? Their very intent is to make the cancer cells sicker than they make me. So if I could view this not as a poison, but a magic elixer that is going to save my life, I could do this thing. Acceptance of the drugs is really not a problem. Hell's Bells! I'll accept anything right about now that will rip this thing out of my body including reading "Personal Surgery For Dummies" cover to cover and scheming on how to get the right mix of general anesthesia to knock me out for the operation while allowing me to walk in my sleep well enough to conduct surgery. I came up with a couple of sleeping pill combinations I thought might work.
After three days, I had successfully begun to joyfully anticipate my return to the hospital and started to talk to my friends and family about this. At first, most of them looked at me sorta weird and all "well, we'll see" while nodding and giving me their encouragement. I honestly can't say what was going through their minds, but when I talked about it in my cancer support group on Thursday, I was met with a nice mixture of skepticism, doubt and encouragement from my fellow "survivors".
A quick aside. My job includes use of a very antiquated data management system called WINS. I have to change my password every 20 days or so. The password has to be unique, consist of both numbers and letters and can have no character in the same position as the last password. Quite challenging some times. Right after I got my diagnosis, I had to change my password. CANCERSUX2. As I was going out on disability, my supervisor wanted my passwords so they could get some of my work done. I read it off to him. I don't think he was nearly as amused as was I.
The weekend came around. Mimi and I had a very pleasant day together, rode to my home group, Sunday Starters, and afterwards rode home along the trail, through the back of the Arboretum, along the lake and up the hill to home. It was a very warm day and I picked the shadiest route I know so Mimi wouldn't get too overly warm. It was one of the longest bike rides I had done since my big 100k the day after leaving the hospital. I was riding along a ways in front of her up the hill by Frink Park and started to get a little pissed off. I'd been averaging nearly 1,200 miles per month through July, but had cut back to about 750 miles in August and now was down to not even breaking 500 miles for the month. The more I thought about it the more pissed I got. But then I got to thinking to myself that I had spent the first 2 days of the month in the hospital, had ridden every single day except one since then, had ridden to 10 of my radiation appointments and put in OVER FOUR HUNDRED MILES for a month that included two 5-day hospital stays. Attitude adjustments are really necessary. It isn't the facts, it is how I view those facts that is critical to my wellbeing.
Sunday evening the weather changed. Josiah was here for the night. We'd get up, have a nice breakfast of eggs and hashbrowns, ride up to the hospital and while I was getting tucked in, he'd go back to the gargage and bring up my trainer, then go get the bike and set it up. If anybody said anything, he was to say, "Hey! His doctor approved of it." Not exactly a lie, since Kapsule told me he wanted me on my bike as much as I could be. He was no more or less specific and left it up to me to interpret his meaning. Poor guy. I could just wait to get THAT call! "You told them WHAT???" Sorry, doc. Won't happen til the next time. You know it is much easier to seek forgiveness than permission, right? I live by that credo.
Now when I say the weather changed, I mean the rain hit and with a vengeance. Monday morning dawned with a full on downpour with winds out of the southwest. Normally, this is just another day on the bike for me. Right now, though, I'm not really too excited about going out in a downpour and putting myself at risk of catching cold or worse. We called Mimi. She came home and we loaded everything into the truck and she drove us to the hospital. I took Cayuse instead of Katrina and locked it in the garage. Josiah and I walked my suitcase and trainer up to 12 East and deposited them in the visitor's lounge and went off to Kapsule's office for the pre-admit bloodwork and meeting with the doc. After getting the labs done, the nurse came out and told me to just head back and get tucked into bed. All my labs looked pretty good.
So now it was off to get some secret magic elixer. I got into my jammies and gown, unpacked my suitcase, set up my cy-fi bluetooth speaker and got myself some tunes going. I was setting myself up in my little "apartment", choosing to view it not so much a hospital room, but a personal suite. Josiah went and got the bike. NO PROBLEM. Nobody questioned him. By the time the nurses came in, I was unpacked, had some nice classical music going and was feeling about as comfortable as a guy could be. I was happy to be here! It worked. When the nurse came in with that bag of cisplatin, I welcomed it into the room. Once she was done and out of the room and Josiah had departed, I lay there and felt this elixer coursing through my system, seeking out the dna it was supposed to work on and knew that everything was going to be just fine.
Round Two was underway and Boothby was in the center of the ring and ready to rumble.
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