Saturday, September 29, 2007

Pre-dawn At The Hospital

My view is north and east but the pre-dawn hours turns what is otherwise a mish- mash of institutional, slab sided architecture into a range of rose colors, pale, dusty and very subtle. It's fun to watch them change as the sun rises and the angle of the light hitting all the intersecting forms change the color. It doesn't last long and gets a little later every day, but it's a little thing that makes the roofscape out my window interesting.

Pre-dawn is also interesting because the floor, for almost the only time of it's day is quiet. The shift changes at 7 and everyone has finished their nights work, AM vital signs taken and the last "bags" hung. They're busy charting their nights work for the day shift. The variety and stage of illness, just in my little corner of this world, is staggering, the demands for each patients' unique medication and timing needs so critical for their health, make it a very difficult task. They have my undying respect and gratitude for what they do every day.

This morning I lay here in that twilight kind of sleep, a time I believe ones mind is the most free, uncluttered and actually expressing the unsaid or unacknowledged. For me it's little short movies that play in typically unreal circumstances and I'm acting out a piece of my life as it is today, but in some other place. So, this morning I was on a quiet golf hole, probably a par 3, not really playing but kind of wanting to practice. I had on my hospital gear; pajama pants, silk t-shirt, topped by a toasty black fleece robe. My 3- lumen Hickman port still in place. I'm looking for errant and un-recovered balls, for some reason I have a wedge in my hand- I just want to practice a little and I'm calmly going around looking under bushes and high grass for a lost ball or two. Click. The scene shifts to the cafe down stairs and the coffee and toast I'm going to order when they open at 6:30. I play out my order in a precise detail that, of course, wont happen when I'm actually down there. Click. The scene shifts again to MJ's back roof deck and a dinner party with lots of people- all of you out there actually - we just are laughing and drinking wine and talking at the end of a day, that when it started looked like this one, only dawn's soft rose is now the blaze of sunset, the passing of a full sun into the calm of night.

I believe it's been a beautiful fall, the days out my window look perfect and strangers comment to each other in the elevators about the beautiful weather. I haven't been outside for 25-days, I believe it's the longest I've ever been inside in my life. It makes your world strangely small. In my world of hospital patient, I'm a live wire- walking briskly down halls and using the treadmill in the recreation room, nodding to nurses, doctors and interns who now know me after all this time. My world has actually shrunk to where this is big. I believe the "outside" will feel overwhelming when I get there. My trips to the cafe downstairs are brief little incursions into a space that I'm less familiar and quite frankly stand out in a strange way. There's nothing like standing in line with a guy wearing the cloths he slept in, a baseball cap and is basically the color of wall board- it's a real eye opener- in my little hospital world I'm a brisk walker and engaged patient, a few hundred feet away, in the real world- I'm, well who knows what they think, but I'm out of my element, a stranger who places orders much better in his pre-dawn musings than in the clatter and confusion of the real world.

So, the sun is up now, this seemed like a good idea an hour or two ago- in re-reading it I'm not sure of the point. But, like those little pre-dawn films that run in my head, perhaps everything doesn't need a point, maybe pointless isn't always bad. They're mostly just random thoughts floating in when the mind is open and kind of lazy. I feel good and they make me feel calm. It's a beautiful day, enjoy it.


Thursday, September 27, 2007

Week Four + Two

Wow, what a time it's been.

Lots of medical news, lots of friends touching down and just being here, lots of love and laughing filling the hall outside my door. I'm blessed again this week, day 22, with the comfort of friends and family. I know it brings a lot of calmness to me, because when left on my own for too long I begin to count days,become impatient and self absorbed. In other words I loose site of what really counts, shorten my vision points and get off the glide path I've been on. So far this has been a cake walk with some bad days- not bad days with a few bright spots and it's all because of MJ and those who drop by and say hello and laugh with me and kids checking in from near and far and long ago friendships being reconnected.

So, medical news. The biggest news of the week is my sister, Ingrid, is a PERFECT match to be my bone marrow donor. Why does that count? She represents the best chance for my body to accept her marrow without rejection. I'll have to be on all kinds of anti rejection medications anyway- but this puts me closest to the genetic source. I rather envision this as a long weekend in which she gets to come to Chicago, see what a great city this is and meet more people than she'll ever remember the names of between visits to UCH to harvest her marrow. It would be great fun for MJ and I to squire her around this great city. That's big news. I've been here 22- days, it will probably take another 8 or so to rebuild my immune system and then I'll be released. They (Dr.'s) are currently chasing a perceived fungal infection which they'll track down tomorrow, I'll let you know what it is when I know.

This week has been rich with lesson and conflict- control and acceptance really. My truth this week is that other than being diligent and paying attention to my Dr.'s and their advice and cautions, there is nothing I can do in this disease but accept what it gives me each day. Above the door of my friend Mike Noble's son's school it says; "Each Day Is A Gift". We all know the truth in that, but of course need to forever be reminded. I don't recommend my way of coming to terms with what that really means- but you know- some of us have to be in a train wreck before we know we're on a train.

Thanks to everyone for making this a week of memories and friendship.

Monday, September 24, 2007

An Embarssment of Riches

I was so tired today and didn't understand why. I have a big prejudice against just lying around and can't imagine feeling tired when the most strenuous thing I've done is brush my teeth. Two units of blood later I understand. I simply didn't have any fuel.

But that's not what I wanted to talk about. Ted came by this afternoon bearing gifts from the office. A stunning piece of creative work to make me laugh and read over and over. At it's heart its about what it's like to have SGDP "right there with me"- beautifully crafted, beautifully shot and uniquely individual in message from everyone- you'll never know the effect that has on me. I can feel the heart that beats at SGDP. I've got the poster version on my bathroom door, the booklet on my shelf next to my bed. And the paper flowers on my book table. Beautiful. I made Ted promise that if he looked at the time cards on this, he wouldn't tell me, we laughed and then talked for 2+ hours about business, life and loving people.

And that gets to the topic. An embarrassment of riches. No man has lived a richer life than me. No man has been luckier in love and circumstance. No man has been given more opportunities and respect and loving tolerance then me. To have a room full of friends, my family and the love of a good and wonderful women, it's simply an embarrassment of riches- this life of mine.


Sunday, September 23, 2007

Sunday/week in review

Good Morning,
Well, it's Sunday and another week has past beneath me. I've had a week of wonderful visits from friends and family and was busy for 4- nights out of 7. Had great daytime visits as well, 5 this week alone. These visits are really the highlights of very long and dull weeks. I've been reading for hours on end as well, currently City of Fallen Angles, a modern history of Venice as told through the lives and unique circumstances that surround the fire that destroyed the Fenice (opera house) in 1996. Through that central theme author John Berendt, paints a portrait of a modern Venice that walks a fine line between endurance and decay. Modernity and traditions. It's really enjoyable.

On the medical front, my hair is beginning to leave me, so I should be a cue ball by the end of this week. Another marker that says I'm on schedule. If you can believe it, that's the week. There's not much going on here in this "wait and see" phase of treatment, my cancer is in remission, to use the term broadly, but they wont be happy here until I've got new bone marrow which gives me the best chance for long-term recovery. I can't wait to get home, but also can't spend much time thinking about it, because I'm in here until my immune system bounces back.

The biggest action occurred outside of here. On Monday, MJ and her sister Elizabeth, supervised a very complex move from my city apartment to her loft in Oak Park. That entailed just about every hateful task that make moves difficult, but add to this the numerous decisions about what to bring and what store of both our collections of art, furniture and photographs- and how those objects add to or narrate a couple of lives well lived. You know you have friends when they volunteer to help pack, box or move things. We (MJ) couldn't have done it without the help that filled in so many gaps.

Thanks all,

Friday, September 21, 2007

Let's Get Scientific

OK, enough of the old master thinkers, lets' get down to some hard science. Just heard from Dr Godley, who is directing my care and the various chemical concoctions that have been sent my way. Her word is that I'm absolutely on schedule. After a biopsy of a couple of lesions the science is saying there are no cancer cells in the lesions tested. That's the first goal- get rid of the cancerous cells that were causing the expression.

Now, I simply need to wait and see if my body will rebuild white cells on its own, stay clear of infectious situations and get as healthy as one can get in a limited circumstance. I've got 10 - 13 days before I can go home and take a rest from the tan walls and institutional green linoleum floors and rigid schedule. So, this is the beginning of a sprint to the end of phase I. My job is to stay clear of infection, keep my mind busy and make my bed every day. The love and care from outside has been (and is) wonderful and I wouldn't be as well as I am without all of your help.

Thank you,

Thursday, September 20, 2007

Data and Natural Forces

What I'm really talking about here is the idea of taking time to sit and ponder.

The time I've spent here, day 16 at 9-AM today, I believe, has been an amazing time of reflective thought and inconclusive activity. Feeling well as I do, I've spent hours reading, listening to music, books on tape and enjoying the company of friends and family. It's kind of a monk-like existence, my worldly responsibilities have been primarily shuffled to others, my world although wired to the outside is very small and there's little competing for my attention. In reality, my time here follows a protocol for treatment that has gone before. There's a percentage of those treatments that didn't yield the hoped for results. Equally, there have been a high percentage of those treated that have met and exceeded any expected outcome.

So, what's the difference? In short, who knows, but there are abundant theory. Because I have lots of friends and they occupy all kind of life posts from minister/priest to retired guys, to writers, to designers, I get lots of opinion. One of the opinions I like best is from Hippocrates in 400- B.C. "Natural forces within us are true healers of disease". Contrast that to the medical extreme of data driven decisions, skillfully using what's gone before, known/proven results, to determine the most productive course of action. While we are missing data as it relates directly to my disorder, there's a mountain of data on 100's of variety of leukemia to point very smart people in the right direction.

Briefly, I feel really fine, reflective and very positive about a life ahead of me. There's a lot that will be new, there's a lot of love flying above me, below me and taking me by the hand every day. Absent more conclusive data, I'll go with Hippocrates and love any day.

Thanks to all of you for the opportunity to experience that love.

Wednesday, September 19, 2007

Random Thoughts

It has been a few days since I've had something to say, so I guess an update is in order. I've had several great visits over the last few days. David Gregg, a Ph.D. candidate here at UC Divinity school, ordained minister and a great guy who could turn a parking ticket into an existential experience spent a few hours with me. Carolyn Potts spent some time as well and then colleagues (Susan and Rhonda) from my office slotted in a visit between meetings. I've had a lot of tests in the last few days, as yesterday was Benchmark II Day, where they tell how your proceeding along the projected arc of your disease path. Evidently, I'm right on schedule- a unique state of being for me as those of you who really know me understand.

What I've been thinking about over the last few days is the disconnect between the reality of my disease and the day to day of it. While reality says that this is a uniquely desperate situation (my leukemia/lymphoma) is exceedingly rare and not much is understood about the best way to treat it, I feel and look fine after the initial chemo courses. The chemistry attacked the disease and it responded with appropriate surrender. The disease's expression, a substantial body rash, recedes daily, until as of now it looks more like poison ivy than a deadly condition. And it's this juxtaposition that the conundrum firmly rests. If you don't look sick, if you don't feel sick, if you don't act sick- are you sick? In my case the answer is yes- I am. However, in most cases the answer would be - if it aint broke don't fix it. So, the gap between how I feel and what's real is something that I need to address each day. Partly, I can't let myself feel guilty for not feeling bad after alerting 1/2 the free world that I'm in real danger. Secondly, I need to keep focused on the narrow boundaries of personal movement that daily hospital living require- washing of hands, wearing masks outside my room, not shaking hands or hugging guests, understanding that feeling or looking ill doesn't equal ill. In short, respect is called for and diligence is required.

I believe that the reality is that the word cancer is loaded. It is the one thing we never want to hear our Dr say. Even benign skin cancer is a brief scare. Then all of a sudden you actually have it and the very thought of chemo and long hospital stays and IV's and chest tubes conger images of pitch white gasping near corpses being tended to by compassionate around the clock care and lots of hand-ringing family and friends. The reality of course is very different and like most things in life nothing is ever what it seems at first glance. My reality is that I will be engaged with this for the next year or so, that it has already changed and will continue to change my life and will require continuous adjustments along the way. But mostly I have to remember that I need to dream big and be grateful for the small, because this is every day and like Churchill said, "its action this day that's going to count most."


Friday, September 14, 2007

Flood Street or My Evening With Greg

Greg Samata came by bearing food from Charlie Trotters, ice cream sandwiches and his new documentary film FLOOD STREET. It's being reviewed or juried for SunDance currently. This is Greg's fifth documentry and he's been shown in both the Tribeca and Chicago Film Festival over the last 3-4 years.

Greg's FLOOD STREET makes me want to make film, tell stories, draw, write books, see the world, cry, re-find my institutional anger, send a check, pray for these kids, remember that they are just kids. The story hooks you early and I like these guys too much and you know you're not going to get away with that untouched. It's New Orleans after all.

There's a lot of ways to speak English and New Orleanians probably use them all incorrectly. There's one way to speak love and Greg's subject, Harry Simms, speaks love in every sentence. Harry is a dreamer who works his vision of running a boxing club for street kids in the lower 9th ward every day. Harry opened his doors when there were none, just his home,garage and a roped off ring on his side yard. But, slowly, out of pocket, he build a ring of plywood and rope, hung some heavy bags around and the kids would come by, settle differences, simply blow off some steam, some would train. All would learn a thing or two.

The young ones (9-11 yr.) looked like spiders entering an open space seeking prey and defying predator. All spindly arms and legs flying straight to the center enjoined in a blizzard of punches using gloves that are larger than their heads- throwing punches 'til the bell sounds- barely sitting, then going at it again with more spider furry.

By now, I love these kids. I love Harry. I love New Orleans and the sideways way that they get to something in New Orleans. Harry is New Orleans, in his case he's got a tightly focused and benevolent dream, he works it every day, but the urgency just doesn't seem to be there- even with his New Orleans style passion- a man with a mission- he's content to work the dream every day, if it gets "better" good, if doesn't get "better" good too.

To me this aspect of the film showed me the thing I've never understood about New Orleans- why don't I like the place? I think it's not so much that I don't like it, as it is I don't understand it and have no patience to try. It's not like I'm all balls-to- the-wall myself, but in New Orleans I don't know how they ever got the grass to grow. Ever time I see a picture of New Orleans today (2-years after the storm) I want to scream- will somebody p l e a s e p i c k s o m e t h i n g u p - a piece of trash a branch, just an old piece of paper or a dead branch- if those old cars are going to sit-around for 2-years on your street- wash them or grow flowers in them or something.

That's the old me.

After Flood Street, which is a small and simple story well told, I want to know why someone (agency, government, philanthropist, New Orleans oil/crawfish/shrimp/sugar/timber/dope/restaurant mogul didn't pick-up an end of this man's work- he'd give more than your money's worth no matter what the size of the gift- he did it every day, dreaming big but not going beyond his own working mans' pocket- seemed that in New Orleans darkest hour someone or something, could step to the plate for a man who touched so many lives every day before they ran off track- and that means in many cases hitting the re-start button before they're 11 years old. Greg's story is pure, simple, told through the dreams and failings of the human kind, inept governments, voracious political waste applied in a place legendary for Me-First. And in this story, the ones who still want to believe in Harry's dream- the little spiders sprinting to the center, both prey and predator- this is a great story of love and New Orleans and a simple man who'll bend over and pick something up.

Fine job my friend.

The Bright Side of the Moon

Well, long time no hear from me. I actually got a taste of what chemo can and often is like. After getting a pass on the post chemo effect from my first round last Friday, Tu.'s application was fine going in, but developed a kick as the night wore on and into the next day. Then on to the next as well.

But, woke this AM to the poking and prodding of well meaning nursing staff and the curious MD's that begin rounds at 6:30, feeling pretty good and feisty to boot. To that point, I put on some shoes and wandered down stairs to the cafe and got coffee and a toasted roll. Very nice - man can I clear a line out! Nothing like ordering your breakfast standing next to a guy with tubes hanging out of his shirt sleeve. As I get closer to neutropenic I'll need to stop that kind of road tripping.

Zach's 1/2 Marathon is this weekend- not sure how that works or what the length is. A foot marathon is 26.2 miles, I guess a good recreational bike ride is 40-50 miles as long as there are Starbucks well spaced along the route. But, don't know how long a bike marathon is. But, he's curtailing his usual social scene (read; local watering holes) for the weekend in a nod to his training regime- ah youth- what a wondrous state. Any way, ride well and be safe my Son.

I'm really happy with the way this blog works. I've "spoken" to people that I haven't seen in years for no other reason than our lives took different directions at some point- but they are all part of a wonderful bank of memories, of kids and summers and block parties and the kind of friendships that your children make that are devoted and innocent and pure in love and heart. Any way, it's good to hear from you all- thanks for checking in.

I believe that's it for the time being- I'll checkin tomorrow, assuredly much wiser that today.


Tuesday, September 11, 2007

Pivot Point

Six years ago today I had just returned to Chicago on the Red Eye from Phoenix. I landed at 6:15 AM, got my bags and caught a cab for the north shore. I couldn't decide if I should go to bed or go to my office as I'm not a very good day-sleeper. Ultimately I decided on a short nap. A little after 8, Vicki woke me with the news of the first plane hitting the tower, I went down stairs, turned to CNN and soon saw the second plane strike. Kim called me from the office to ask if I would be in - her voice told me that was not really a question.

Why am I talking about this? I guess it's about events that profoundly change the trajectory of lives, be it a nation or an individual. No doubt that 9/11 has shown America at it's best and its worse. No doubt that our personal seminal moments bring out the best and the worse in us as well. When Dr Godley spoke to me about my condition, she said as a preface; "what I'm going to tell you is going to profoundly change your life, how you live it, what you plan for, how you determine what's important and what's not ." I didn't ask for more detail.

So, in the short time since I've known about this illness, 3-weeks this Friday, I have taken steps to change my life. I have thought about the "worst" in order to plan for the "best". I have people all over this town sending me good thoughts and heartfelt prayers. I have a wonderful wife and her beautiful children to add to my pile of gifts. So, I found it fitting to get up this morning and be greeted by the cheery, efficient and notably professional staff of UCH and a day of chemotherapy. Makes sense, it's 9/11 the day that profoundly changes lives.

Monday, September 10, 2007

Now, Now!

Monday, 3:30 PM
I might feel a little differently if we were on a death watch or something here, but I must admit, that I feel far from my last days on this earth, if the food were better, my stay here would be hard to criticize.

Monday, 8:30 PM
I guess this is less than breaking news now and I've lost the thematic thread to this comment anyway. Today has been a lot of activity in some ways, with several derms and rheumatologist by to see the rash and talk about the onset (how fast, how dense, pain, etc.). More tests and curious inquiry.
Tomorrow (9/11) is another round of chemo, 6-hours like last week, here's hoping for similar results. The long and the short of it is- I feel pretty damn good for a guy who has cancer and pretty damn lucky to have a lot of wonderful people looking after me. Life is good.

Sunday, September 9, 2007

Meditation and Veal Marsalla

John and Betty came for dinner last night and brought veal Marsala. John thought a good wine might add to the evening, but I declined given the odd chemistry that's circulating in my system. I may only be a brain surgeon, but I don't lack for common sense either. We dined in the sumptuous surrounding of TS 669, a light breeze furnished by personal Air King fan, the busy hum of "The Forefront of Medicine" plying its healing rhythms just outside the door. No candles, but the white bed linens provided a simple nod to cafe life.

I've noticed a lot of comments about my "short game" and I just want to mention that it seems very cowardly of those commentators to use MY BLOG, established in my time of greatest need, to bring up and make fun of MY SHORT GAME! What are you going to do when you don't have me to kick around? I have meditation CD's that I listen to each night, my favorites are "You Too Can Chip", "Total Mind/Body Chipping" and "You Are Not Your Short Game" (my favorite). Since I'm semi-retired I'm guessing that my game will become one of fairways and greens in regulation, now that the implusivity of youth is behind me. We'll see, Spring is a short 7 months away. And have you ever met a old guy with a bad short game?

Lastly, feeling pretty well today -- my lesions continue to get smaller, but I don't think less dense. However, it feels like these things are on the move and the oncology geeks are all tilting their heads, squinting and pursing their lips with curiosity. They've not seen this before and it really excites the instincts for learning that got them here in the first place.

Saturday, September 8, 2007

Better Living through Chemistry

Well, it's Saturday morning and the first batch is in there kicking some cellular ass! I must say that the day was uneventful if one imagines what is really going on inside you. While the chemo, formulated to seek out the fast growing white cells finds its way to them, you actually feel nothing but a restlessness that comes with being tied down to a pole and a bag.

The post effects were not so benign; it took about an hour to feel the unique effects of the chemistry and it just kind of takes me down -- like a bad flu. But more magic chemistry, an anaemetic (sp) to quell the nausea, something for headache and I drifted off to sleep. I don't believe this is the end of that kind of reaction for this round, but I don't have the next infusion until Wednesday, so I don't believe I'll be uncomfortable the entire time between now and then.

Dr Godley was just in and thinks that my bumps have begun to recede -- I thought the same this morning, but didn't believe it possible. The other interesting thing is since what I have is a tumor (just on the skin) that the medical team can see the effects of the therapy immediately -- actually acting on a tumor and not having to rely only on lab and imaging to tell what's happening. This is immediate feedback to the therapies because they can actually watch it hour-to-hour change form.

Thanks for the new picture Zach -- taken at the church picnic I believe. Eri get to bed earlier, please don't worry. If you want to call, just do it -- if I don't feel well enough to talk, I wont answer or I'll let you know.

Dr Godley just told me that I'm moving to a better room on the north side of the ward -- I'll post the new phone and room number when I get moved it.

Is It Still Saturday?

OK, I know I was going to post once a day, but, well, I've been here all day, read books, walked the halls, read about Venice with MJ for a bit, sketched a little, re-written parts of my will which made me realize that if I was an attorney I'd have to have a day job because more than an hour of that stuff is about a light-year beyond my attention span. The big excitement is that I get to move rooms some time today, as they want me on the leukemia side of the ward where it's more sanitary as my immune system becomes less effective from the chemo. I'm also trying out a better "posting" technique that Z explained over the phone so he doesn't have to keep rerouting my posts. So, this short ramble is a test of sorts.
More later.

Friday, September 7, 2007

And So It Begins...

I'm getting my first round of chemo today, beginning about 9. The nurse said it will take 5 hours and will be a combination of 2 therapies. They tend to leave you alone on this ward; perhaps because I wasn't under treatment I got the entire night without taking my vital signs or weighing me or asking me what drugs I take. This is a very quiet ward as well, which tells me that after treatment begins that I may get quiet myself.

So far, I don't feel like the science experiment I thought I would. There was a small line at the door of eager oncologists and interns to see this strange disease, but after that it was a quiet evening and night. I haven't seen my attending physician yet either -- I'm not clear how this works yet. I know they work in teams and teams have several sub-specialties in oncology working together and making decisions, but so far I haven't seen any of them.

Basically this is your prototypical U of C ward, spare of detail, flat beige walls and tile floor to match. The windows are horizontal about 4 feet tall, but don't seem to bring in much light. I'm facing south west looking out over the garage and another hospital wing. This end of the floor is very hot, so I got a fan from maintenance that helps move the air around. Although I got it from the hospital, it's new (just out of the box) and has to leave with me, I guess to prevent infection? Can't wait to see that in the bill -- I wonder what they get for a $12 fan.

I'm having trouble with the SGDP e-mail server letting me send mail from the U of C. Currently I can get mail, but when I send a reply (or new mail) it goes to my outbox -- so it's being blocked.

OK, that's about it for now -- it's 7 AM and they're beginning to shuffle around out there in the hall.

Love you all.


Wednesday, September 5, 2007

What a Send Off

Zach, thanks for verse -- it's not often you've seen me poised on the prow of my small craft like that. Believe I'll strike that pose more often, however -- especially when going to battle. There's something noble in it. I wonder if I can ride a gurney with as much dignity? We'll see.


Welcome to A Healthy Goodwin

I've always thought that prose is for the weak. With that in mind, a welcome in verse:

Gather 'round children, and with wide eyes behold,
Arnie's tale, for the first time digitally told,
An epic battle pitting mutant marrow and shells,
Against a mounting force of Interferon and cells.

With muskets aimed and bayonets poised to tear,
This site will serve as a way to share,
About Arnie, the Battle, the glory to come,
When the virus is vanquished, the trench-war won.

So, hold loved ones close, grab pike and spear,
Gather needles, and doctors, and exotic chemicals near,
Put them to work with all deliberate speed,
For a healthy Arnie the world does need.

That's all I've got for now. I'll let the master of ceremonies, Mr. A. H. Goodwin, say the rest.