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That's right, it has been a year since we laid in the bone marrow donation from Lisa, day zero was 9/30/08. That seems like a lifetime ago! I just finished reading almost the entire blog, mostly because I was looking for some pictures I know are there but lost in massive hard drives/multiple user hell. I need those pics for the speech I am going to give on Nov. 6th, at the big pre-race pasta party, and the process of writing that and rereading all that has happened makes me reflect on what has changed and what has not.
It brings tears to my dry and scarred up eyes reading all the comments of love and support from all of you, people from my past and from my present. When this began in '05 I expected a lonely monk-like journey back to health, but that is not what happened. Instead, all these people stepped forward to help me, to cover my back, to prop me up, to do what they could to help me get here. I cannot thank all of you enough. I don't know if I ever would have made it without all the support and encouragement and love. One stumble and a lonely monk might topple off the path, but I had a whole team around me, so when I stumbled they held me up and urged me to keep-a-goin'.
Everything has changed and nothing is the same. In spite of a reconfigured brain I do some of the same old stupid things I always did, which sounds contradictory to what I said in the last sentence. What I mean is, when I do the same old stupid things, now they are far stupider. I am like an older car now, so when I take a curve too fast I sway, and my wipers aren't wiping very well, my struts are shot, and my transmission doesn't mesh as well as before. So I have to learn to drive differently, or pay the mechanic.
My mom ended up in the hospital a few days ago, so she really wasn't feeling any better when I left. She has pneumonia and they are working to control it with antibiotics. I called the hospital and tried to get her into a single room, and they will do that when they have one. How stupid is a system that puts people with complete strangers when they are at their most needy and vulnerable? We need to rethink this.
So I regret not staying in RI an extra week, not just for Mom but also for the people I need to see, Mo and Paul M. and Bill McNiff and Roger and others. Unfortunately I may have a return trip sooner than later, to help mom's recovery, and I will leave that open-ended. I am doing as my wife suggested and signing up for some volunteer work, Hospice (uh-oh, here we go again) and the Literacy Council, so that will complicate things. The Literacy Council may not want me since I pointed out 4 mistakes on their website, or maybe they will want me because of that. That is one of my OCD manifestations, noticing misspelled words. It is funny because I found a number of typos while going through my blog.
I started reworking this blog into a book, but it is going to be a massive job of editing. And I have questions, like what if it made money, what cut do I have to give Mo and Pat and Mac and Manitoubou and others? I think the comments make the blog what it is, funny and irreverent and hopeful. I was imagining how it might be without that support and I wrote this, in part in response to the weekly prompt from the writing workshop I attended and still visit online.
My friends are tired, tired of me
being sick, it is
taking too long.
They wouldn’t say ‘Die or heal already’
but they might think it.
Like a coconut I have shed my hairy husk,
down to a hard kernel, a nut filled
with the milk of life.
I worry that I have become the cancer,
it is all that is left of me,
it taints my milk, and my friends
smell what they think is death.
I must rise up and crack this hull,
spill out this life and
show them I am here, I am fine,
they are dying too.
My son Mike said that was 'woeful', and I had to remind him that I have a poetic license with no expiration date. And furthermore, he is the one that dressed up as Nancy of Sex Pistols/Sid Vicious fame. Dang, I used to think he might look too pretty!
My Mom, looking good at 86, but not feeling all that well
Started this 3 weeks ago:
I am getting ready to go to RI, see Mom and celebrate her birthday, see Bill's new house on Arnold's Pond, play some golf, go see the Red Sox Thursday night (thanks Bill), party Saturday night with the East Coast friends. I should have planned a longer trip, but don't want to wear my Mom out.
This morning I noticed the knot of scar tissue on the inside of my left cheek is gone! The mucositis in my mouth is almost entirely gone! The doctor cut me back to 30mg prednisone every other day, down from 40, because all my counts are good and liver function tests are back near normal. My eyeballs are still goofy, googly even, so I lubricate regularly, this too shall pass. Now if I could only regain some strength; Bill is going to be shocked at how weak I am on the golf course, but oh well.
Even though I am weaker, I have beefed up my legs, I think. Training is upwards of 20 miles/week, Saturday was 7 miles which I did at 17 minute miles (I am walking). I was going to mix in some short jogging periods to mix up the muscle groups, but when I mentioned this to the doc he said not to do that. Not only are my muscles wasting from a year of prednisone, but my bones are getting so brittle that he is afraid I could fracture that crappy left hip if I jarred it by jogging. So I walk. Somewhere in the first mile my left hip always asks me, 'WTF are you doing, Tonto?'
Saturday, 9/26
RI was not a particularly fun trip, as Mom wasn't well and I didn't give myself enough time. The airlines suck, US Air sucks, and I suck for not managing it all better. I can't see ever booking a round trip, since there is no cost savings unless fares are rocketing upward. In the future I will go one way, see how things are at the destination, then book a return. I did get to golf a couple of times with Bill M., but I could not get anything done with his clubs and my swing, and shot over 100 twice. Shot an 89 yesterday at Dairy, so I guess I won't quit just yet.
Bill bought this house on Arnold's Pond in Warwick, awesome spot. I think he did the tax return for the old doctor that lived there, and when they carted the old guy off to jail for evasion, Bill got the house. There is this mural in the living room that was painted way back in the 60's by John Lennon and Jerry Garcia, who grew up in our neighborhood and I used to beat up JG in basketball and broke one of his fingers many times. I think he had problems with that later but took up guitar just to show us he was tough. Some of this story may not be true, and the names changed to protect the guilty. Anyway, here are some pics, unretouched so they are real.
Bill and Rose's front yard, private beach and all
View from the LR
The mural
Bill took me to see the Red Sox v. Angels on Thursday, and we had a great time even though the Sox lost, 4-3. We went to get a dog and a beer (my first beer in a year, maybe the last) and while we were in line the Sox scored all three runs. Grrr. Still a lot of fun, 20,000 sports fanatics and me, the only one without a Sox shirt or hat or something because it was back in CA. Thanks for the game, Bill!
Donald W. drove down on Friday and met me in Lincoln, and did my 8 mile training walk with me, which was like a walk in the park for him. Wait, it was a walk in the park! Anyway, we then went and had dinner with Randy, good to see them but too short. I had lunch with Earl at the cool cafe that Pat runs, and I brought a piece of driftwood and some jade for Mo, which I like to think of as interactive art. A couple years ago he sent me this cool stick in a rock, a walking stick that could be a blunt trauma instrument if needed to be, so I reciprocated with some rocks in a stick. Mo, send me a picture once you've interacted it so I can post it, and I will put up the walking stick too.
The downside was that I didn't leave enough time to see Paul M., Mo, tool around on Earl's boat, get calzones at Elaine's, fix Mom's faucets, and generally visit some more. I thought Mom was feeling better when I left, but she checked herself into the hospital yesterday when her oxygen levels were real low. I talked to her today and she sounds much better, but they are keeping her and running tests, as they would with any other celebrity.
That is where we are at. Dana is getting tired of me being all-talk and little action, so I have to shut up and get moving. Beauch gives me a lot of the same flak, calls me a not-blogger. So here I am, blogging about not blogging. The eye doctor says my eyes are getting better, but I can't see where I am going and I am not sure where I have been. I now have the DVD of the wedding we held at Patrick's Point, but it needs some work to shorten it to something I can post. I have been confirmed as one of the podium speakers for the big LLS/Team in Training pasta party the night before the Santa Barbara Press Recorder Marathon, so I am working on a speech and slide show, about eight minutes at East Coast speed. Why would I do that? To say thank you.
Waric awaits. I had lab work done last week, and everything looks good, liver numbers are almost normal, barely anemic, immune system is fine. When I mentioned that I was losing strength in spite of working out, the doc told me that I was suffering from 'prednisone wasting', where over a long term of prednisone the long muscles, especially quadriceps, start weakening. Time to get off prednisone, in other words, so we are weaned back to 40mg every other day.
The mucositis in my mouth is better, but my eyes are getting worse. I went to see the eye doctor, and he showed that I am building scar tissue in the inside of my eyelids. The eyeball does not like that, it likes a nice smooth surface, and if left unchecked I could rub a hole in my cornea. That would be bad, and they would sew my eyelids shut for a few weeks to heal it. Hmmmm. So the path is to lubricate the eyes many times a day, and use restasis drops, and go back in a month. The eye doc also said stay out of the ocean, the salt water is just adding to your trouble. Just as well, my balance is so shot I can barely stay upright on dry land, forget about on a surfboard.
I am going back to RI on 9/14-9/22, to see my mom for her birthday, so all you crazy Waricians get ready. I have been taking my time writing this post and now it is Friday. I should have gotten this done as I was home without a car most of this week, and it has been 90+ out, just bearable in the house. Mike is in full swing at school, very busy, and Sean his carpool mate got sick, so I go without a car more than my share, that's the deal. Mike came home feeling very sick on Monday, flulike without a cough, but then mustered by Wednesday.
Dana is back at work full-time, which means at least nine-hour days plus some weekend hours. And it means I have to start thinking about making dinner again, which is just not my normal way of thinking. I was getting there in spring but floundered in summer. What is frozen that I should thaw for tomorrow?
It is now tomorrow, and the chicken is thawed, and it is bad, it has been thawed for days, as it turns out. This morning, Saturday, the TNT half-marathon team did a 6-mile training walk/run. I am trying to get under a 20-minute pace and hit it at 18 minutes/mile this am, so at least that. I did 3-mile walkd 3x this week and a 5 miler on Wednesday, so a 20 mile week. And I feel fine, meaning no worse, although the hip likes to sing me the blues now and then.
This has been a strange period, with Mike taking my car at least every other day. What do I do? I cleaned house, cleaned the garage, did some gardening, the laundry is all done, but I am having a real difficult time getting into the kitchen and caring about cooking. I need to tie it all up into a menu for the week and see how that goes, but Mike and Dana have been coming in from school at odd hours, so I have that excuse.
Maybe I will start doing market research and see if I can make more money with the money I have. I've been hunkered in CDs while this neoconomics finishes playing out. I can't think of a better way to stimulate the economy than by losing all my money in the market and going to work at Carl's Jr. I have started some genealogy research, so we'll see where that goes.
