22 October 2011
Well, where did we leave off with this little tale? Oh yeah. Donald (aka Raleighdon the Bold) had just jumped up off the stool and answered the bell, ready to score some punches to this cancer crap that wants to knock him down and out.
So, Josiah and I “smuggled in” the bicycle.
Nobody gave us any resistance, in fact the nurses on Swedish Hospital's 12-E Oncology Unit actually encouraged me. None would hop on and give it a try, but they were all impressed at the set-up. We had the music playing. We had unpacked everything and after a nice hearty lunch,
finally the nurses came in and got me going with the pre-hydration, then the steriods and then the chemo drugs. It wasn't long before I was chasing Josiah out of the room and settling myself in.
In Round One, the fatigue of the drugs really hit home for me on Wednesday afternoon and for about 18 hours, it was all I could do to get out of bed. This time around, for whatever reason, I did much better with maintaining a high energy and high spirits. I had lost very little weight, didn't puff up like a balloon with water retention after the steroids and discovered the wonderful world of ATAVAN! One of the things about cancer treatment is that it opens one's world to pretty much anything that will fight off the pain, fight off the nausea and fight off the demons. I found Atavan to work very well on these last two, simultaneously. Every night, when it came time to sleep, I took an Atavan which kept the nausea down and allowed me to get quite a few calories in late in the evening and drift off to sleep and wake up refreshed the next morning. What could be better?
On Wednesday, the hospital's cabbies came and took me away for my second PET/CT scan. I'd been down this road before and found it to be the most uncomfortable of all procedures, having to lay in a dark room after drinking a nasty tasting barium drink that made me feel bloated, then after a 45 minute “nap” having to lie again in a room all by myself while this machine whirred, buzzed and moved around me, keeping my arms overhead and not moving so much as an eyelid. This is tough for a guy like me who can't sit still for a minute without itching, twitching or bitching.
This time was somewhat better, though, since they had some handholds for me, which allowed me to relax better. I found I was able to almost go into a meditative state and take my mind off of the little issues that were coming up. All of the things I have learned in the past were now starting to come back to me and I was beginning to draw on some of my deep inner resources I hadn't thought about for a long time.
I heard not long ago in a recovery meeting that this individual's recovery moves at the speed of pain. I like that analogy, and think it is a bit true in my life, as well. It seems like I've gained a vast amount of some skills over the years that I tend to take for granted, and it is only when I am visited by a great pain that I have to dig down, truly discover them and focus on how to apply them to the situations at hand. Something about lying around in a hospital bed for a few days gives me a lot of time to focus on that kind of thing.
Thursday morning, Mimi came in early as we were anticipating Dr Kapsule coming in and giving us the results of the PET/CT scan. Just before 7:00, in came this wonderful, silver haired doc, wearing a smile as big as a Dutchman's pair of britches, and he told us the news was really, really good. The more he talked, the more the news sounded good, but not quite as good as we wanted to hear. He was talking about this as being a Stage IV cancer, not Stage II as we thought, but with the shrinking of the lymph node in my neck, they had to assume that somehow, that node was cancerous and the chemo was killing it off. He said Louie Louie would be coming in to visit us on Friday to go over the surgery schedule.
I was left with a mixture of elation and depression. Elation because the tumor had shrunk by almost half and the lymph node in my neck showed as normal now, but depressed because I was really a “Stage IV” patient, and I've read all the statistics; I know the odds; I don't want to face that reality. I knew I needed to.
I started to think about the gift again (see my last article), and how this was an opportunity to learn new and wonderful things about myself, an opportunity to grow both emotionally and spiritually, even as my physical body was doing something other than what I wanted it to. I had to reframe my thinking, and spent most of the day Thursday and Friday working through it all in my mind and heart, remembering my agreement with myself that I would not feel sorry for myself, I would not whine and I would keep my sense of humor. Both of those rules needed to be enforced, and I am the only one who could enforce them. I started to look that nasty foe Cancer in the eye, looked deep within myself and found that it is a weak, pathetic, piece of shit disease that can only gain in strength as it saps me from mine. I got on the bike. I rode. I gazed out the window at my office and Puget Sound. I took naps and dreamed of pleasant things. When I woke up, I reflected on the good times I've had and laid on my back envisioning myself next year doing a lot of them again. I started (again) making plans. Cancer got weaker with each moment.
Louie Louie came in late Friday afternoon to talk to Mimi and me. He wanted to do a mediastinoscopy to rule out any involvement of the lymph nodes in the chest. OK, fine. Just another day of surgery. Seems the debate twixt him and Kapsule about continuing treatment included the need to rule out any spread that could not be seen on the PET scan, otherwise they may be doing a surgery that would leave me weaker and not kill the cancer. Not the best approach. OK, doc. I'll take your word for it. I really don't have a choice here, since both of them have been down this road many times and I never have.
Saturday came and it was time to go home. After getting settled in, I decided I needed to ride to the store. Loaded up 35 pounds of groceries at Red Apple and Mimi and I rode back to the house, giving me my first outdoor ride in October, about 9 miles, half of it with my bike fully loaded.
Then came the first knockdown of the round. I thought I had cancer on the ropes and was working to the body really well, figuring I'd start coming on with a few uppercuts in the next few days, but out of nowhere, I took a right hook to the jaw that lay me out on the sofa and that was where I stayed from noon Sunday until sometime Wednesday. Talk about taking the 8-count.
By Thursday, I felt good enough to try to ride my bike again – this was the first time since December, 2008 that I had taken more than 2 days off the bike in a row and it felt very odd, not even wanting to ride, yet wanting to be on my bike in the worst of ways. This was another of life’s little lessons coming at me. Sometimes it is more important to listen to the body than it is to listen to the heart. I decided to ride to work with Mimi, then ride to the Renton Highlands for my therapy appointment.
Right after receiving this diagnosis, I had gone back on anti-depressants in anticipation of a severely decreased level of physical activity and when I do that, it is equally important to be working with a professional to maintain my mental and emotional balance. Dale (aka Happy Trails) has proven to be an excellent match for me, seeing through all of my little defenses and listening very well to my cues so that she can help coach me through some very tough times. Her office is in a quite inconvenient location – for anyone other than an endurance cyclist who loves nothing more than pulling a 1-mile 12% grade first thing in the morning, that is.
Unfortunately, on this morning, just as I was crossing over Sunset at North 3rd, a guy yelled at me from his car, “GET OFF THE FUCKING ROAD, ASSHOLE!” This as I was trying to move across traffic to navigate into the left turn lane so I could do exactly that. Very bright guy, indeed, and obviously well versed in the law as respects bicycles and their rights and duties. As I was fantasizing about making an about face, chase him down, pull him out of his POS car (and it really was a POS!) and beat the living crap out of him, my chain broke, leaving me in the middle of a busy road and nearly falling off before I could dismount and walk through the light. Every other vehicle, of course, treated me with extreme patience and confirmed my belief that for every 100 or so very good people there is one asshole. Sometimes we meet up and life gets “interesting” for a moment in time.
I walked up the hill. I heard Pansy Palmetto cackling and telling me “This is God’s way of telling you that you’re trying to do too much.” Thanks, Pansy, much appreciated. NOW you tell me!
After my therapy appointment, I had the opportunity to try out my tow service, Better World Club, for the first time. Like AAA, our new service will come and tow your car, help you get in if you space out and lock your keys inside, jump start your truck if you are smart enough to leave the key on, the door open, the heater fan running and music playing for 4 hours (not that I’d ever do THAT!), but they will also come and “tow” you and your bike if you have a breakdown. They were great!
Fast response time, courteous service and drove me and my bike right to my garage. Within 45 minutes I was home, taking a nice hot bath. And had a nice 15 mile bike ride to show for it, as well as a grand adventure. People kept telling me they hoped the rest of my day went better. Thinking about it all, though, I thought the first half had gone exceptionally well. I’d ridden and felt better for it. I’d had a nice chat with Pansy. I’d had a great therapy appointment and an adventure. What could be better?
Well, what was NOT better was the nausea. Talk about a pity party. If ever I was going to get through this I had to stop feeling like I was going to throw up every time I tried to eat anything, drink anything or even brush my teeth. After Round One, I’d had very little nausea, but this time was different; it just seemed to go on and on. It was just this constant feeling that cancer had hit me a really good body shot to the kidneys, followed by a punch straight into the solar plexus. Nothing seemed to be helping. I knew I needed to gain some weight, but was finding it difficult to do with wanting to throw up every time I even thought about food.
Then I made Jell-o.
I don’t know what it is about this magical food from my childhood, but it worked like a charm. Cherry jello with cut up peaches. I made it and waited impatiently for it to set, then ate a big bowl. It was like manna from heaven. I went to bed feeling quite comfortable for the first time in a while. An hour later, I was up, eating more jell-o. I did this throughout the night, and by morning was feeling much better. Thanks, Mom, for teaching me about this wonderful, cheap and tasty treat so many years ago.
And there was the fatigue. I wasn’t sure if it was the cancer or the chemo or the radiation. Mimi told me it was all three. REALLY? Wow! I guess that made sense, but it seemed like the radiation and chemo should have been done working their magic by now. Cancer seemed to be having its way with me in the middle days of this round, and I was just trying to take some strategy from my hero Muhammad Ali and play some rope-a-dope with it. Lean back into the ropes and take the punches, allowing some cushioning and letting my body rest while it got hammered on. He did, after all, say some of the most important things that continue to influence my life: things like, “It's the repetition of affirmations that leads to belief. And once that belief becomes a deep conviction, things begin to happen.” I believe I can beat cancer. With every punch I absorb, I think to myself that it really isn’t so bad. I’m stronger. I’m tougher. I can win.
After a week of feeling the blows as cancer and treatment continued to pummel me, we went out and rode a 100Km ride, giving Mimi her 1,000Km milestone for the year with RUSA and our 10th consecutive month of these 100Km rides together. Dr. Codfish hosted the Pie Run
and a little dinner afterwards. We did it and finished it. At the end, I felt like I often feel after a ride three times that long, and Mimi had to drive us home. It was a beautiful day, riding with friends to the edge of the rain,
turning around and coming back, finishing in bright warm autumn sun. For a few moments in the day, I was able to completely forget about cancer and just enjoy the moment. These seem to be fewer and farther between right now and I was feeling pretty punchy by the time we got home.
The next week, I slept at least 9 hours and sometimes 10 hours every night, and on Monday had my first general anesthesia surgery of this treatment course, the mediastinoscopy to remove and biopsy some of the lymph nodes in my chest. By the time we got the results back on Thursday, we’d met with the surgeon, met with a neck surgeon (who told me the way I ride is just crazy) and met with my oncologist who sprinkled holy water on my esophagectomy, calling it the “mother of all surgeries” and totally rejecting my idea of doing hernia repair surgery at the same time. I’m telling you, these guys go to 12 years of medical school, spend their whole lives dealing with cancer patients and all of a sudden they think they know everything! Sheesh!
With the news that all my lymph node biopsies came back “normal” AND the report that I have a lot of “extra” lymph nodes and they are all “healthy urban lymph nodes”, we were pretty ecstatic and ready to start punching back a little bit. And then I got one of the coolest gifts I’ve ever received. Cousin Margy had made me a quilt. I came home from a bike ride to find a package waiting for me. It was soft and squishy. “Whee,” I thought at first, “another tee-shirt or sweatshirt.” I’ve received four really awesome tees from friends and family that have become my principal wardrobe, letting me wrap myself in their love every time I put one on. What a surprise to open the gift and find this gorgeous hand-stitched quilt, with my cousin’s love in every single stitch of the needle. “Donald’s Wild Ride” is the name of this beautiful piece of art. I wrapped myself in it. I went to the sofa and sat there and wept tears of joy and gratitude. I’ve got the best handlers a guy could ever hope for.
I was now starting to get rid of the nausea, starting to pick up a little more energy (and gaining a half-pound a day) and riding almost every day again, even just 10 or so miles.
Little jabs, some good body work and not trying to punch myself out to the point of exhaustion. That was the strategy all my handlers were giving me, and it was starting to work. I knew, though that I needed to take a little bit of a mid-round break. I’d been knocked down pretty good earlier in the round, and needed to be careful not to work so hard in this round that I can’t make it to Round Three, which is going to be really tough.
So I hatched a scheme.
Mimi and I have this wonderful beach we love.
I’ve spent a lot of time up and down the California, Oregon and Washington coasts, and visited beaches in lots of other places, but Ruby Beach is one that I love more than most. I think since I discovered Seal Rock on the Oregon Coast, this is the place I have found that brings the greatest pleasure. It has all of the things I love about the ocean. It has some old grown forests to wander through; it has sea stacks (some of the Quillayute Needles); it has a nice quiet stream; it has wide, long expanses of beach to walk; it has beautiful driftwood and lots of smooth stones. It is “our beach” – I have no memories there except with the light of my life. We took two days, essentially checked out of contact with everyone and went to Kalaloch Lodge
for the night, then the next day, spent time at Ruby Beach. The entire time, we spent our time just holding hands, sitting together and reading/painting, playing on the beaches, watching eagles, and taking turns driving and playing disk jockey with the music we had on board. A truly wonderful honeymoon and exactly what any sensible doctor would order. Even if he would not agree to let me get my hernia repaired at the same time they’re removing my esophagus, gall bladder and all the lymph nodes on one side of my neck.
Coming home, I stepped on the scale Friday morning only to discover that I am now within four pounds of where I was at the start of this little boxing match. Every doc I meet tells me I look really good. I am rested and thinking that I can score a knockout here in Round Three. Like Muhammad Ali, I can not only beat my opponent, I can pick the round. I am the (second) greatest!
I think I just heard the bell ending Round Two. Everything is done and it is time to sit on the stool, take a sip or two of water, let my handlers do their magic and get me ready for Round Three. I feel really strong. I feel really positive. I’m ready for whatever takes place in the next three weeks.
As I sit here, reflecting on my hero, this is another thing he said that has shaped how I view life: “Life is a gamble. You can get hurt, but people die in plane crashes, lose their arms and legs in car accidents; people die every day. Same with fighters: some die, some get hurt, some go on. You just don't let yourself believe it will happen to you. “
Some days, you just gotta believe!