Epiblog, Have a nice day!

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.

Scratching out a living

Just when you think you are out of the woods, it turns out they were full of poison oak! In the last month, as my immune system recovers from 2+ years of suppression, it decides to go on a rampage of a sort, and I am one giant itch as the WBCs go rampaging from spot to spot. One big constant allergic reaction to nothing! This seems to be related to circulation, as heat really gets it going. I step out of a hot shower with rashes everywhere, so now I am taking cold showers. Benadryl is keeping the whole thing under control, keeping it bearable, and the doc thinks it will subside in some time, but so does breathing. The only other person I know that went through this treatment is still having the itchies, and she ended chemo months ahead of me, so I have that to look forward to. It could be a long hot itchy summer.

The other night my scrotum was on fire with the itch, and I was wondering if I had mentally blocked some wild party with hookers in Reno, but it was just the crazy WBCs going after a hot spot. I actually considered cutting off the whole mess, but then my head was itchy too, and my ears, and my chest, so I can't chop off everything that is itching. I had to bust out a firehose of 2.5% hydrocortisone cream and put it out; back to the damn steroids!

Just to make things well-rounded, the acid reflux thing is back and I have to cut back on my favorite drug, coffee. Jeez. So, the new drugs are Benadryl and Protonix, and Gaviscon when things are really kicking. Right now I feel like something is trying to break out of my rib cage. Things seem to get going about 2 hours after a meal, and I am right on cue. But, my golf game is coming around, and when I am outside the itch is gone, probably because of the cool weather we are having around here. Mac, I played Dayton Valley CC (Nicklaus design) with the boss last week, shot an 84 from the blues. 40 acres of water on the course, and at least 100 sand traps, so I was pretty damn pleased.

Young John is home from school, so the house is a little different. He is running with a game idea I had a few years ago, so I am going to have to help him with it, and maybe we can both avoid real jobs if it works. Stay tuned.

Everything else is pretty normal. School is coming to a close for Mike and Dana, and we need to get some vacation time planned, I've worked over a year with 3 days off. I will probably keep posting until the itch dies so my readers with leukemia that read this can see how it might fare for them. The key to scratching out a living is living, not the scratching.

Boring is sometimes good

My bone marrow biopsy was clean, I am a clean machine (in that sense). Didja get my pun about boring? I wonder how old you are when the bad puns gene turns on?

Let's get our goodwill thoughts to anonymous Bill, send him some white cells through the ether or however you all did it last time.

For some reason the blog just got 5 times the hits it's been getting, maybe the new blogger setup drew some looky-loos. Let's hope the incidence of leukemia didn't just jump. Maybe my friends are looking for some final words of wisdom from me. It's 7:30 Monday am and I am on my way to work, so I don't have my head in the game. I will post this and follow up with a final blog of wisdom. Here are the only thoughts of wisdom I have right now. Stay balanced. Slow it down if it's going bad. When it's fast, read more break into your roll. Keep your head steady. Do all this and you too can shoot 88.

Work to live, and enjoy every day you get.

Putting my chemistry set away

I just took my last dose of mecaptopurine (I hope). No more prednisone, no more vincristine, no more methotrexate. I have taken 21,600 mg of mercaptopurine, 9000 mg of prednisone, 2835 mg of methotrexate and 180 mg of vincristine in the last 18 months. I feel good. No worse than Halloween at URI, and only mildly stranger. I won't get that bone marrow biopsy until April, give the cruel flowers time to bloom if they are there growing in me, which they aren't. Fer cryin' out loud, nothing lives through this shit, I haven't had a cold or the flu while people drop like flies all around me, knock on wood. I have never seen flies drop, hmmmm.

Anyway, I am trying to throw a golf game back together, an old man game that doesn't go for power. It's been about a year since I gave it up. I've been hitting the shag bag and the putting green. Hit the driving range yesterday to get some tips from Jack Leary, and now my hip and back are hurting. Surfed yesterday, really badly, first time in 5 months or so, then hit the driving range, so maybe that was too much. Or, I can't ratchet down to the old man swing and overdid it. Golf is a strange game in that you can quit for a while and lose some bad habits, so when you restart it seems easier. Of course those old habits will sneak back and the nasty cycle begins again. The price of freedom is eternal vigilance. A new hip is cheaper; I see they have this new way to recoat hip joints with titanium, gotta check into that.

Looks like I made it through leukemia, and it isn't going to kill me, at least not just yet and hopefully never. It certainly has made me change my basic outlook of the future, but I haven't taken the big step of changing my life to reflect that. My guess is that most of us will die leaving behind grandiose schemes, plans, ideas, unrequited loves, regrets, novels in our heads, gifts never given, travels never travelled, words unspoken. Reminds me of a section from the book of Bokonon from Vonnegut's Cat's Cradle:
Tiger gotta hunt. Bird gotta fly.
Man gotta sit and wonder why, why, why.
Tiger gotta sleep. Bird gotta land.
Man gotta tell himself he understand.
I think that's where it's from. I keep talking to myself but I still don't understand.

I will post one more time, after the April tests, and then it will be time to put this blog to rest, we hope for good.

dX plus 2

2/8/07, Two years after diagnosis day
In theory this was the day I would be done with chemo. It is 3am, and I am up and about since 2 at least partly due to 100 mg of prednisone. Health is good, but the doc wants me to go one more month, just for extra kicks. So this is my last steroid week, a little more mercaptopurine and some methotrexate, a bone marrow biopsy just for a final check in early March, and we're done!

I noticed about 4 weeks ago that I was always freezing even though it was 70 in the office and at home, and then I started gaining weight, so we tested out my thyroid. The dang thing was normal, and my doc says I am just finally wearing out from the chemo, and I will probably sag a little more when we end it, but then by April I will recover. Reminds me of The Wasteland by TS Eliot, which I will only include parts of because it is long:

APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
..........
What are the roots that clutch, what branches grow
Out of this stony rubbish? Son of man,
You cannot say, or guess, for you know only
A heap of broken images, where the sun beats,
And the dead tree gives no shelter, the cricket no relief,
And the dry stone no sound of water. Only
There is shadow under this red rock,
(Come in under the shadow of this red rock),
And I will show you something different from either
Your shadow at morning striding behind you
Or your shadow at evening rising to meet you;
I will show you fear in a handful of dust.

A moment of silence for Chiaki, who I worked with at Symantec, who sadly passed away last week from stomach cancer, leaving her husband and teenage daughter. Turns out she was born 2 days after me, and I was thinking how that bullet was meant for me, but I ducked and she caught it full brunt. A stupid thought. More like she hit the other side of our medical care, she had a doctor who dismissed her symptoms for something like a year, and when she switched docs it was too late. She suffered the chemo bravely even with the full brunt of side effects that I never got, and with the knowledge that she was only delaying the inevitable well beyond what they she could endure. She seemed a happy and very peaceful person that I would have liked to know better, and her passing brings me sorrow. I wish her luck and bon voyage in her travels through the universe.

Everything else is good, chugging through life. My neighbors are having more fun than us, but our house looks nicer. I think that means they are winning if we're keeping score. It is time to ratchet back the work efforts (at home) and enjoy life more. Dana and I get caught up in a battle of who does more, and then we start keeping score, and then we're caught in the death spiral. I am out of gas and can't tread water in the whirlpool for long, so I am opting out of this spiral this time. Let's take up dancing and go for a canoe ride, maybe have a BBQ.

Hey, maybe it is time for the final phase BBQ! Hmmmm, I have eyebrows, and now I have a bigger gut, maybe a big gut BBQ. Mac, I bet you got some spare big guts in Alabammy, no?