First off, good luck to Nick, hope those tests come back saying you have mono or a bad cold. We will all think good thoughts for you.
My health is fine cancer-wise, just the same old annoyances I mentioned last blog. I had doctor week this week to check on some parts that need rotation or replacement or flushing or realignment. The skin doc took out the freeze gun and blasted a bunch of AKs and SKs (non-cancer growths, keratomas) off my legs. One of these was super itchy, and I was glad to see the sucker burn; I prefer pain to itch. He blasted some more on my head, and then these recurring warts on my hand. One of those blistered up and looked like a giant pink gemstone ring on my pinkie, very Godfatherly.
Next I saw the throat doc, then the GI doc. I definitely have acid reflux, gotta go to 2x/day Nexium. Funny, the doc asks, does ERD wake you at night; it wakes many that have it at 3 am, peak acid production time? I say no, but damned if I didn't wake this morning at 2:47 with a lump in my throat. The power of suggestion, or the chocolate I ate last night, and the ice cream, just like the doc told me not to do. Man, cutting back on some food favorites and coffee is going to be tough. So, here I am, feeling chipper, closing out this blog, making one last entry. I said to my wife the other day, 'I don't feel like I am having very many good days these days, I'm just caught in a rut of doing the same things.' I made a vow to myself when I was in the hospital that I would only have good days, but it is obvious now that that is impossible.
This all started when I asked myself when the last time was that I woke up and felt good and had a day I enjoyed, a good day. Tough question. First off, what is a good day? I realized I didn't know, or at least had never stated my criteria, what scale I would use to judge the days. And what if these are the good days, and you can only measure them in the end, when you've seen all your days? I suppose that would be more of a better/worse days judgment, and I don't know if you can just add days to each side without rating each day. So I am considering the power factor of certain good days, really really good days, wicked good days. Super bad days too, I suppose. Can one extra good day offset a week of sorta bad days? That's what vacations are all about, in part. I see my neighbor's driveway empty many weekends and I say to the wife, 'They're having more fun than we are.' So I go along, piling up these sorta bad days, and trying to offset them with a few really good days now and then to get balanced. It doesn't seem to be working. So what makes a good day? I asked a lady at work that is very introspective, and she couldn't answer right away; she will think about it this weekend and get back to me. Dana is pondering it, and I am too. Here is what I am coming up with.
I would want to wake up and feel well, maybe not healthy but with no new aches or pains. I would accept the pains that I already have and am dealing with - the hips, the elbows, the ERD, the skin itch and growths.
There would have to be love and connectivity with the family. Maybe a snuggle to start the good day, warm in bed, woman all soft and smelling sweet. Some interplay with Mike that was positive, a good hug, smell his head like he was still a baby.
I would do some physical activity that made me feel good about myself. I almost always feel good after surfing, even if I suck, but I feel bad after golfing if I suck. I often golf with people I don't really like golfing with, swing talkers and the like, but surfing is a solo sport, just paddle down the line if someone is bugging you, and I haven't had to do that for a long time. That probably means I haven't been surfing enough. Does this mean I should quit golf? I love golf. It means I should only play with people I enjoy playing with.
Each day I would have to invest time in future good days by eating right and exercising. I love the ice cream and chocolate, but will pay later in acid reflux and general ill feeling. Same if I overeat, which luckily I don't do often. I could solve some of my pain issues, and golf and surfing issues, even work issues, if I were stronger, more flexible and had more endurance. I have to upgrade my diet to get the energy to have good days, so I would eat a lot of veggies, and drink a lot of water.
Whatever I did that day, work or home, I would have to do well to have a good day. I like tangible results myself, and in my job I don't often get them for weeks or months. That is why I am drawn to golf - tangible results and quickly. I would not let bad situations infiltrate my good day. For a really good day, I wouldn't have to deal with any bad situations, client or vendor disputes in my work. I would have a victory of some sort, finish some difficult task, solve some sticky problem, create something useful or beautiful. The act of creating something is very satisfying.
The people around me would be having a good day too, so there would be no bad days of theirs spilling into my good day. At work, shared victories. At home, shared wonders, love, affection. I would help my kids in some way to prepare to cope with this world, to have many good days and few bad ones.
Feeling like you are part of a community should be a factor in here, but I don't feel that in my gut very strongly. I feel at odds with the community often, with the way our govt. is (not) handling things, with the opinions of my neighbors in the newspaper. There is a feeling of continuity that comes from community, that everything will be as good or better for your kids, that you left the world a better place, and I am not getting that these days. I worry about the future for our kids, and that does not help towards a good day. One way to move this toward the good day side would be to work towards bettering something that needs fixing. Maybe that means volunteering, or writing, or blogging, somehow pushing earth towards a good day.
It's almost 6 am Saturday morning. I read the newspaper, and now I'll get ready for my typical Saturday am routine. Drive to the Rock in Morro Bay, check the surf (surf's up), maybe cowboy up and jump in the cold water. If not, go to the golf course and practice for a couple of hours. I always enjoy that, because it has no pressure. Get home around noon. This weekend I will go into work for a few hours, catch up on some reporting I need to do. Watch the Red Sox in the World Series at 5. Sorry honey. Let's Go Red Sox. I have been chanting that at work randomly, let them know where my allegiances are.
As I've said before, it has been very therapeutic for me to write this blog, but leukemia is not really part of my day-to-day life anymore. It lingers in the background, this veiled threat. Maybe something bad will happen, maybe not. All I can work on are the odds. All my friends and family have made me feel part of a community that matters, my karass. As Bokonon said in Vonnegut's 'Cat's Cradle', and I may be repeating myself here but bear with me:
"We do, doodley do, doodley do, doodley do,
What we must, muddily must, muddily must, muddily must;
Muddily do, muddily do, muddily do, muddily do,
Until we bust, bodily bust, bodily bust, bodily bust."
Of course Bokonon also said
"What can a thoughtful man hope for mankind on Earth, given the experience of the past million years? Nothing."
But then there is this:
"Tiger got to hunt, bird got to fly;
Man got to sit and wonder, 'Why, why, why?'
Tiger got to sleep, bird got to land;
Man got to tell himself he understand."
We are what we are. Thanks for letting me be part of your community, and for all the support. Have a good day.
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Stay well Holycow. I eagerly anticipated your observations on your condition as it mirrored mine almost exactly. They were helpful in relieving my anxiety during this 21/2 year journey. For some reason my doc wants to do a final biopsy on nov 1st. If it is clean, then in feb 08 I will have the chemo port removed from my chest. Three years sheesh!
ReplyDeleteMy main physical complaint is feeling flu like after lifting weights. Instead of the post exercise muscle soreness, my bones and joints ache. Maybe this will pass with time. Bill
I want to thank you SO MUCH for you support during the really bad months after my husband was diagnosed with ALL. He is 7 months into maintenance and doing well, so far.
ReplyDeleteThank you so much for being a very good friend, part of my "community" while the ground was cracking under me.
If you start another blog, let us know!!
Lisa
Wow John,
ReplyDeleteWhat's a good day? I can tell you this. A good day for me was any time I checked in on your blog and learned that you were still doing well. That always made me feel good, as it did again today when I visited. It's funny how the simple things in life that bring us pleasure are so easily identifiable, i.e., the purr of the kitty, the smell of The Little Woman, the taste of a great martini - or a nice wine, the sunrise and sunset, full moons, seeing a friend after a long absence, turkey dinner on Thanksgiving, the great golf shot, clean sheets, the dim but interestingly different light at dusk or dawn, the raising fog over a river, standing under 100 foot fir trees, looking at a snow-capped mountain, watching a stream or the ocean or a fire, finding a great piece of jade. Shit John, I could go on here forever. But you get the idea. Don't be too hard on yourself because you're not changing the world go a measurable degree. That is relative, you know?
I can't possibly pretend to understand what you've gone through with this kick in the ass you got with leukemia. But I do know that your courage, resolve and undying outlook and energy have brightened my day on many occasions. I simply cannot describe how your spirit has impressed me and left me with a humbling glimpse into this thing called life.
I wish I lived closer, so I could be that golf buddy to enjoy the game with you.
Take care my friend. You've made more impact than you think.
Mac
Hi John and Dana!
ReplyDeleteI have continuously followed your blog ever since Dana told us about your illness. We were at the same Weight Watchers site and there isn't a week that goes by that I don't think about Dana and that she isn't mentioned at some point in our journey.
I am glad that your cancer is gone but did thoroughly enjoy reading your blogs and today's hit home, probably to a lot more people than just me.
thanks for letting us share your journey and I wish you many many many good days. Please give Dana my best and let her know we all still think of her, you and your children and send warm thoughts your way.
P.S. Dana, something you've always said stays with me..."fall down seven times get up eight"...something along those lines.
Hope you stop by and visit sometime...we miss you!
Terri aka. teen'smom
Just to let everyone know my leukemia has returned. My bone marrow results of jan 18th showed the leukemia had returned. amost a year after the end of my 2 year chemo treatment.
ReplyDeleteNow It looks like I am off to dana faber for a bone marrow transplant.
Bill
Bill,
ReplyDeleteOne day when I was at Stanford some friends came to visit me near the end of my stay. I walked them out to the parking lot as they were leaving, wearing my pink mask. A guy came by on a bicycle and shouted at me "15 years after BMT and look at me!" It took me a minute but I realized he thought I was a bone marrow transplant patient and he was showing me how much hope there was. So, Bill, there is always hope. Good luck on your journey through space and time.