Wednesday, December 9, 2009

"When the weather is nice every day it is no longer very special".
I for one am glad its winter. Cold weather and winter rains are refreshing. Like the contrast between a sunbeam through a layer of clouds and the darkened landscape it interrupts. It reminds me that things are changing. Its new and that newness makes you pay attention.
I went to the gym on tuesday for the first time since April.
Last Friday I got the results of the PET scan from my doctor. In truth I had a pretty good idea on Thursday. I asked the technician to show me the scans and I've had enough to know what to look for.
So the radiation worked. There are no signs of cancer activity in my body. What is left of the tumor is dead and the mass itself has shrunk. My doctor was thrilled to give me the news- it's the first time she's had good news to give me since treatment began. The caveat is that, optimistically, there is only a 20--30 % chance that it will last.
Why am I not happier? Where is the euphoria and joy? Like Damocles and Dionysius I cannot easily forget the sword hanging by a horse hair over my head.
I'm sorry I'm not more excited. I tried to call someone after I got the news. They didn't answer, and as the day went on my mistrust of the previous day, when I had looked at the test myself, returned. I'm wary of the rug being pulled from underneath me.I'm not just physically damaged from the cancer, poisoned from the treatment. Im emotionally , psychologically, philosophically challenged as well. There are more ways to recover than just growing back some hair.
Don't get me wrong, I'm ready for the miracle. But the nice thing about miracles is that you don't have to be prepared for them.
What is it in life that even generally happy people need help with? Why do we drink, smoke, do drugs? Living is hard work!
But I'm glad I get an extension on my warranty.
I guess there's something to celebrate!

Monday, November 30, 2009

5 months… what can I say? I remember researching stem cell transplants and Hodgkins disease online, reading old blogs written by people over the days weeks or months leading up to their new treatment- the humor in the face of physical pain and repeated disappointments, the hope in this new and often final treatment. Then the time comes and the blogs stop. What happened? Did it work? If not then what? Did you get sicker? Did you die? How do you prepare yourself for such a thing? Please tell me, I need to know!
Well, in some way maybe now I know. Perhaps for many people it just takes too much energy. It does, it takes a lot. Not just physically but from whatever it is we call our soul. Maybe some die. Maybe some have such good news they don't want to jinx it. Or maybe, as in my case, the news isn't so good, and the future not so clear cut, and each day is another day you just don't want to talk about it anymore. Shock? So, yes, after all this time, thats the news I have for you. It didn't work.
Things were hopeful in the hospital. Physically I've proven to be a robust character. While the misery of high doses of the most toxic chemotherapy available and the loneliness of three weeks of isolation in the hospital are not forgettable, I managed to suffer little in comparison to many of the patients. Except for a constellation of purple scars on my back, anemia, and a general lack of fitness compared to before it all began I now bare few outward signs of what I've been through, and I overcame the rest that I left the hospital with quickly.
I was completely hairless. Forbidden to leave the house without a respirator. Forbidden to walk on dirt, contact soil or plants. Proud to be able to walk around the block. Forced to live in a state of hyper-sanitation. Driven to the hospital everyday for tests and transfusions. Everything had to be cooked and boiled. Dependent on the best of friends. But none of that lasted as long as they said it would need to. Imprisonment for 6 months dwindled to a few weeks and I was walking all the way to Glen Canyon without a respirator and sneaking onto the trails amongst the willows and rocks. All of it seemed miraculous, and it was.
So, in mid-August I had a PET scan. I had the beginnings of nose hair, eyebrows and eyelashes, stubble on my head. My doctors thought I looked great. I was walking a few miles a day. Being around numbers of people still seemed forbidding, but the proximity of BART was alluring and I was ready. But you already know the answer now. It didn't work. Instead of disappearing there was a new focus of tumor activity, the old tumor had become more active and it appeared that the cancer had spread into the adjacent lymph nodes. It had gotten worse. The irony is that it has always been the treatments Im recovering from. Except for that week of high fevers and night sweats a year and a half ago, my cancer hasn't made me sick. Its killing me invisibly, with stealth. And sometimes I don't want to write about it.
Almost immediately I began radiation. It had always been planned. Radiation would have been used to clean up the area of the tumor because of its size. Now it had become a vital last effort to kill the cancer. 6 weeks, every day, I went to the clinic, lay down and had a particle accelerator aimed at my chest, 360 degrees. I had a sore throat. I have permanently lost the hair in an inconveniently large and unnatural pattern on my chest. I look like I've never been sick. I run a few miles every day. I hike. I eat what I want. I started to work again, part time. This Thursday, December 3rd, I have my next PET scan.
Now Im living what I call my 19th century life, only a bit less romantic and a lot less wealthy than most Jane Austen characters. But I have a lot of time to sit and think about the world and my place in it. Inside my chest is a broken heart and a thriving disease, a little heaviness both physical, emotional and spiritual. I've read and watched so many movies and t.v. shows that now I often just sit and stare and think and watch on my down time, as I imagine many of those 19th century characters did in a much slower world, with so much more time to themselves.
So, what future do I plan for now that any future is in doubt? How do I continue to dream, fantasize about the different possibilities of my in a little house in the country…traveling abroad? Is this why I've been drawn to the elderly lately? I watch them and wonder how they feel about the proximity of death. Are they waiting? Am I waiting? In the botanical garden, after a plant sale, I followed an old woman whose fingers danced along the uneven top of a fence as they scattered the rain drops recently collected there. Her walk seemed to take on a skip and hop to match the freshness of the water and the thriving garden. And then on the train one day an elderly woman got on all scowls and confrontation. She was coarse and bitter to anyone close enough to ask where she should get off and why the hell wasn't this thing easier and isn't that seat for her. Then as the train left the tunnel she settled down to the view outside her window, the setting sun, the fog lingering behind the skyline of hills and buildings, and with distracted pleasure she smiled and stared like a child. So much to be bitter about, but the world still has something visceral to offer. This mixture of bitterness and joy reminds me of my own mixture of robust appearances and inner sickness.
What do I have now? The worst of the symptoms have faded and Im left with…? Was it easier to live with, be motivated by, the obvious physical symptoms from the treatment? My apparent health is chimeric. What happened 5 months ago seems like a sad and horrible dream, a dream that may return all too soon. I don't want to die. I don't want to die, but I don't want to live life dying either. I don't want to sit in a hospital while the act of living slowly dissipates. I don't want to lie in a bed numbed by drugs drifting in and out of sleep, punctuated by dwindling visitors, until I don't wake up from that dream. I want to choose to live until I cannot. I want to be in control. I want to decide when its over. I'm not in control. I want to live, but I don't want to live dying.
I was listening to Jesus Christ Superstar the other day, again. I love that thing. I guess it's that 70's humanism I was raised with. Now, I'm not religious. I'm most assuredly and unabashedly an atheist. But I understand now more than ever the human brain's struggle to grasp mortality. Being such aware creatures is both a blessing, the secret to our success, and a curse. The way I see it the lesson of the story of Jesus comes from our attempt to reconcile mortality with life; with our ability to be selfless, kind, thoughtful, generous and at once selfish, callous, destructive, murderous. How do we continue knowing all this, and that in the end we will die? We create a martyr, an afterlife, a reason, a purpose, an explanation for the unexplainable. Some things in life can't be explained, can't be understood. No matter how we try
"…now I'm sad and tired."
And Im angry and I hate. I rage. I crack open and sob. I'm remote, sad, lonely and bitter. And yet there are songs to be sung, the sun sets in glorious ways and the trees are beautiful and so many lovely things will bloom this spring.

Wednesday, June 17, 2009

"Hope Is The Thing With Feathers"... I was first introduced to this line in a book title rather than the poem by Emily Dickinson from which it was borrowed. The book, by Christopher Cokinos, beautifully describes the last days of five species of birds driven to extinction by human avarice, lack of foresight or just plain gross stupidity. 
Though I can never leave the confines of my 12' by 12' room, I'm lucky that the room's window looks out over a beautifully maintained enclosed garden. It's big enough to support a nesting hummingbird. There is a fountain the mourning doves love to circle before they begin to bathe. The large cherry tree has a branch just outside my window large enough for a hawk to land on... I watch it eat it's meal of song bird a few times a week, just before the humming birds and robins chase it away.
I'm doing quite well here, recovery wise. I've avoided the worst of the later side effects from the treatment- though the beginning, right after the consecutive days of high dose chemotherapy, was rough. I may even be home by the end of the weekend...! 
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.


Wednesday, June 10, 2009

Have you ever noticed how profoundly sad a song about happiness can be--- "Blue Skies, Smiling at me. Nothing but Blue Skies, do i see."?
Maybe Irving Berlin wasn't writing about being happy at all. Was he constructing that veneer of sunshine behind which hid a deep, inescapable melancholy? Was it the great depression when he wrote this song- when poor people could escape to dreams of emerald cities and wizards of oz?

Sunday, April 26, 2009

I've thought about people who die suddenly, accidentally. How they too might have tumors, blood clots, unknown diseases waiting to make them ill and slowly drag them to there end, but they go quickly without ever knowing, living life the same way up to that moment...
The moments when my mind isn't occupied by cancer and all the complications it has brought to my life are fewer and farther between. Those moments are isolated like islands... or fragmented landscapes surrounded by the hubris of human development. Yet, I've never once had a dream about cancer. I've never played out in my sleep the limited possibilities, the best or worse that could happen or is happening. I don't dream about anything like that. Its as if its just too big a thing for my mind to even bother with. Maybe that is what makes mortality so frightening.
Tomorrow I'm back in the hospital- another 4 days of chemo. Hopefully I won't have to return five days later like last time with neutropenia and an infection. My blood count gets so low that, besides no immune system, the need for a transfusion is a serious possibility.
Last week I went to Stanford to have a tunneled catheter put in my chest. Its to facilitate the stem cell transplant process and all the extra chemo Ill get. Its a hole in my chest with plastic tubes hanging out. It replaces the now seemingly discreet subcutaneous port-catheter I had before, like a push button under the skin. This thing is high maintenance and hates to be ignored. It screams out the freak show side of illness. There is no turning back, I really am at this point. Its not a dream. I don't dream about cancer.
In the hospital everything is monotone: sounds, colors, all muted and drab. It's like they are removing you from the vibrance and excitement of living, just in case. I mean if death does come while your there it might not seem so different. Gray, dull, boring, nausea isn't as far removed from the end as springtime, blue skies, neon colored flowers and sticky green leaves. Or at least that's the way the world seems when you leave the hospital after too many days of chemo. I cried too see the sunshine and new leaves and the wind on my face and the smells of springtime! Unfortunately the last chemo left me a little less able to hear the sounds of living. One of the chemicals contained a toxic dose of platinum, enough to permanently damage the hearing in some patients... like me. I will ignore statistics, I will not be a statistic...
So at the end of May I start getting the high dose treatments that will destroy my marrow. By june 2nd I should be admitted to Stanford for a month. On June 8th Ill receive my stem cell transplant because my blood will be dead. They call it "day 0". Zero? I'm not sure I want too many of those kind of days.
As always i continue to live and take pictures: flickr photos

Tuesday, March 31, 2009

If you want to understand existentialism, don't read Sartre or Camus, just study the nearest dog. I thought this was a novel observation made possible by the unique lens of my cancer, only to learn that a blog in the New York Times had beaten me to the punch. NYT writer Dana Jennings, while describing his experience with prostate cancer, realized that his dog, like my housemate's dog Rosa, has no problems living in the moment. Something we struggle with every day. Most of us have seen some three legged pooch or some ancient canine hobbled by arthritis, still happily chasing balls, wagging tails, eating snacks and curling up in the sunshine, without pondering the meaning of and the limits imposed by their handicap. 
    Well, I've put off updating this blog in my attempt to live in the moment (and in denial) for the last month of any sort of normalcy I'm likely to experience for awhile, and in the process I was scooped. But tomorrow I start a new treatment regimen that will eventually lead to a month long stay at the Stanford Hospital in June for a Stem Cell Transplant. Tomorrow (Thursday, April 2) I will be admitted to Kaiser Hospital in San Francisco (2425 Geary Blvd 415-833-2000) for the first of 2 high dose salvage chemotherapy treatments that will last 4 days each. Salvage because my initial treatment failed to work, so a more toxic cocktail of drugs will be mobilized to knock it back a bit... a sort of arms escalation to buy me some time.
    This is the beginning of a long process, and I'll have plenty of time to tell you more. For now I only warn you that I'll be asking, sometimes begging, for help this summer- companionship, transportation, even care at home and more. Ill be dependent on others for so much and that bothers me as much as anything. But I'll learn to ask for it.  I thank everyone in advance... Scott 

Wednesday, February 18, 2009

Has it really been more than two months since I last posted an update to this thing? I must have been trying not to jinx myself... quietly going about my business through those four additional chemotherapy treatments. I haven't really wanted to talk about it, not wanting to dwell on the worst that could happen, hiding. It will go away won't it?
     No... it won't. I got the results from my newest tests last week. I have what they call primary refractory Hodgkin's lymphoma. After initially responding to treatment my cancer has become resistant to chemotherapy- the last four treatments did nothing. This is a really bad thing. It is worse than a recurrence of cancer later in life.
     Statistically, with standard treatment, the outcome is "dismal", to quote a medical journal. Statistically, I would die within the next two years. So, I will likely receive a less standard treatment- a "peripheral autologous stem cell transplant" after receiving extremely high dose, very toxic chemotherapy. My bone marrow and my immune system will be destroyed to try to kill the cancer. The stem cells harvested before these treatments will be reintroduced to bring my marrow back to life. It will take years for my immune system to regain strength. Many people die from subsequent infections the first year. The success rate for achieving remission for two years is somewhere between 10 and 50 %. For five years the odds go down, longer than that the odds plummet. This treatment will put me in the hospital from 4 to 8 weeks and it will make me very sick. The chances of getting secondary diseases from the high dose chemotherapy is also very high.
     Long term survival is relatively uncommon, and much of that borrowed time must be miserable. I can't help but wonder if it is worth it? It seems we allocate far too much time and too many resources extending life with out worrying about how that life is lived... quantity versus quality. I always thought that I would not want to waste the resources if my life became dependent on technology and pharmaceuticals, but then I always thought I was a robust, healthy guy.
     When will this happen? I don't know. I'm in no hurry to find out. My doctor has to consult with many people. I have to go through more tests. Honestly, I will stall for as long as my doctors say I can with out adversely effecting the outcome... It's spring!
    The other day I was looking out of the train through a window smeared with hair grease at dusk. The post sunset sky shown like mother of pearl layered behind the silhouette of San Francisco across the bay. I saw the nearby gray, rain washed houses, steeples and streets of west Oakland and couldn't shake the thought that I would not be around long enough to see these things change over time.
     I really don't want to die.

Tuesday, December 2, 2008

Luck, realistically qualified on a relative continuum, can be at once good and bad depending on where you choose to focus. You're in a car accident and only the car, not you, gets hurt. You were in an accident, that's bad. It could have been worse, that's good? 
Well, I'm having trouble finding the right spot to view my good luck from. On Monday after Thanksgiving, before chemotherapy, I met with my oncologist to discuss my PET scan. This test was to show what progress my cancer had made on the path to remission before radiation. Well, its on the right path, but my cancer seems to have taken a rest stop, having made it a short way down the road, to rest up and get some energy.
My good luck? Well, the cancer hasn't spread or grown. It has responded to the chemotherapy. The tumor has shrunk. Just not enough. My bad luck? There is a core of the tumor that continues to be quite strong. It's possible that it has developed a resistance to the chemicals that were meant to poison it, not just me.
I will continue chemotherapy now for 2 more months (4 more treatments) and the radiation delayed. The hope is that it just needs more time. If not? Well, then it gets bad. I will need a much stronger chemical therapy. One powerful enough to keep me isolated in a hospital at Stanford for a month. One that requires the removal and storage of bone marrow stem cells from my blood. This is saved for future transfusions while under going therapy in the hospital, to replace what your bone marrow can no longer make- blood.
So, where is my good luck? I'm sure there are people who have it worse than me. Is that my good or their bad? I am lucky for the wonderful people in my life: family, old friends, new friends, people who care who have hardly had a chance to get to know me, and Steve. You all are my good luck. Thank you.

Friday, November 14, 2008

When you move to a new place its exciting: new neighborhoods, streets to learn, buildings to orient by, parks to explore, people to watch and friends to meet, apartment hunting and job seeking. It's a challenge and its energizing. When cancer was new I was energized. Dare I say in it's newness it was somehow exciting? Life suddenly had a time frame, an end was coming into focus. Where as previously I had wandered with little thought to destination- this new place, mapped by mortality, had an endpoint. Earth quakes might end lives in this city, but they also lift the beautiful mountains that frame our views. Alas we go to and from work, or where ever it is we go, every day, we pass them by, and eventually we stop seeing them.
My cancer treatment has become routine. It fits into my schedule like work, like laundry. At first I was inspired to find and make something pretty with words and pictures. Now I put it off, Ill write next week. Ill go for a hike tomorrow. I'll bring my camera the next day. So I haven't updated this in awhile. I'll try to start again. 
6 weeks ago my treatment was delayed. My white blood cell count had dropped too low to proceed. We waited an extra week and started up again. Now I inject myself with a bone marrow booster for 5 days after each chemo. They don't want to delay another treatment- it could ruin the efficacy of what I've been going through. My hair continues to thin, but not so much that I'm bald. The fatigue and nausea last almost until the next treatment, as does the horrible metallic/chemical taste that taints my mouth. Luckily this story is punctuated with enough moments of energy that I've also had the time to enjoy life here and there over the past month or two.
Speaking of life, today, friday, should be my 2nd to last chemotherapy treatment. Next week, November 20th, I'll be scanned to see if there are any active cancer cells left in my body. If not, my last chemotherapy will be on December 1st! Two weeks later I'll start radiation therapy, 5 days a week, for 4 to 6 weeks. Luckily this targets only the tumor and is not a systemic treatment, so the side effects should be less severe.

Monday, September 29, 2008

Wishful thinking and reality, sometimes its hard
to tell one from the other, that can be a good
thing. Sometimes its all to clear that reality isn't
always based on wishes, that can be bad.
The reality is that each treatment leaves me nauseous, drained, weary to a greater extent. There's a dead chemical taste in my mouth and a vague sense of dizziness that only seems to leave as the next treatment is due. My hair begins to fall out easily, my white blood cells dwindle away.
My second treatment in my right arm began to cause pain and damage my veins, so they switched to my left for the third. Much less willing to put up with it, my left arm hurt at once. The pain increased daily until it felt like broken glass was being pushed through the veins of an already beaten arm. On the thursday before my fourth chemotherapy treatment I went into surgery again, this time to have a port implanted in my chest. This port bypasses my arms, lies under the skin of my chest, and a catheter leads from it to feed the chemicals directly to an artery into my heart to be pumped into my body. Isn't it weird to poison a body in the hopes that what you want to kill is weaker than what you want to save and will die just in time to to let the other live?
So there's my dose of reality for you. Now I'm halfway though chemotherapy.
The last two weeks were hard. I am so grateful for the companionship that got me through it, that allowed the best part of wishful thinking to be a bit more of my reality.

Wednesday, September 10, 2008

 I was just walking home, watching the moon rise over the hump of McClaren Park's summit as I waited to cross a busy street. In the distance, the eastern most shoulder of San Bruno Mountain glowed the tawny beige of mourning doves, deep blue gray shadows, creamy yellow highlights, purple and pink irridescence. The gray fingers of fog spreading east but neither advancing or withdrawing over what remained of the bird egg blue sky. The nearer buildings of the city glowing white in what sun still shown across the fog, lighting the rising moon white as well.
   Ive been asked if I know what caused the cancer: was it toxic fumes from painting, genetics, a badly timed broken heart? I don't really know, and don't really care. It's there and that is what I have to deal with.
   So tomorrow is my third chemotherapy treatment, this would be three of eight. After the last treatment in November I begin radiation therapy... and then? Hopefully it's over.
   I've been lucky so far. The side effects have been pretty mild:  nausea, more easily tired, perhaps a bit light headed at times. I still have hair... and it's pretty hard to put a dent in my appetite! Thats pretty good when you get a quart of DNA destroying, mitosis disrupting poison pumped in your veins every two weeks. 
Well, I'm not even half way yet... 

Tuesday, August 26, 2008

The woods, the flowery fields of grassy hills and meadows, the deep forests, the mountains and rocky crags, the beach and cliffs, these have all been important places for me. If anything has given me peace and a sense of something mystical it is these places and their native residents. This is probably no more or less true now, but certainly my awareness of it is more acute. There is where I want to be more and more, but where I am less and less. 
   My neighborhood park, named after Glen canyon, which it contains, has become a surrogate for all those other places. On the days following my surgery, and now those days of nausea following chemotherapy, it is this place which energizes my walk, keeping me hiking and happy and probably healthy. I follow the trail from the deep shade of the Eucalyptus up to the more wild, steeper, slopes of native grassland whose rocky towers of fault folded franciscan chert look out over the tops of trees, through the opening of the canyon walls to the bay. Up here you are on level with hawks floating on currents of air looking for a meal. Up here a bit of my loneliness floats away.
   I'm reading a small book, "The Land of Little Rain", about the desert, by Mary Austin, written at the turn of the century. She has a lyrical way of capturing the magic of quietly and slowly experiencing the seasons of a place, how the things that live there reflect those changing seasons. She often describes the human denizens of the desert of this era, the last of the native americans, the sheep herders, the prospectors, how alone with themselves they can be in the desert and yet would never think of leaving it. It made me wonder why, for myself at least, it is so mush easier to be alone in the wild, be it woods, mountains, desert, than in the city. Maybe that is why the bay area has such a pull on many of us. The hills and mountains, the ocean, the bay, the forests, they all take some of the loneliness out of the cities, but of course in the compromise nature has lost much of its wildness to the cities. Still, it frames, embraces, almost every place we live in.
   Here is an excerpt from Mary Austin's book. Its about a little annual that grows in desert washes, in the dry grassy hills of the coast ranges and Sierra foothills. Many of us have gotten to know this little plant intimately- Linanthus dichotomus: "Larkspurs in the botany are blue, but if you were to slip rein to the stub of some black sage and set about proving it you would be still at the hour when white gilias [Linanthus] set their pale disks to the westering sun. This is the gilia the children call "evening snow", and it is no use trying to improve on children's names for wild flowers.
   From the height of a horse you look down to clean spaces in a shifty yellow soil, bare to the eye as a newly sanded floor. Then as soon as ever the hill shadows begin to swell out from the sidelong ranges, come little flakes of whiteness fluttering at the edge of the sand. By dusk there are tiny drifts in the lee of every strong shrub, rosy tipped corollas as riotous in the sliding mesa wind as if they were flakes shaken out of a cloud, not sprung from the ground on wiry three-inch stems. They keep awake all night, and all the air is heavy and musky sweet because of them."
   Ahhh, so go out and hike, climb your local hills, walk in the woods, and don't forget to take me.

Tuesday, August 12, 2008

Mt Tam
A little more than 8 months ago I was watching the sunset west of Big Basin from Castle Rock, saying good bye to the old year on the eve of the new. I felt love in the beauty of the moment and the person I shared it with, who shared it with me. In that golden glow I couldn't have known I was at all unhealthy, that something was growing in my chest next to my heart.
I was reading a story in the NY Times- a woman who had had cancer wrote that she had become the entertainer at the hospital, with her doctors, nurses, other patients. She wanted to control how she was remembered- not as a cancer patient, but as someone exceptional. She felt she had lost herself with the healthy person she once was. She was trying to make sure that whatever she was becoming, it was a "full-blooded, memorable human being".
Isn't that what I'm doing? Isn't that why I started this blog, why it looks the way it does? I want to be exceptional. I want to be associated with beauty, eloquence. I want you to think of me as someone worth remembering, someone you want to hike with, talk with, laugh with. I want people who don't know me to want to. I feel my grasp of me being threatened.
It's funny how facing death makes people feel threatened. They become aware of their previously neglected mortality. Isn't it that awareness which makes us distinctly human? Isn't it the contextualness of our experience of the world, our acute awareness of cause and effect, of the abstract, that makes us (well some of us) distinct as animals?
Sometimes a melancholy melody collides with my momentary reflections and brings a sob to my throat. Sometimes I weep- not because I have cancer, not because I might suffer pain, not because I could die sooner than I planned, but because all this might happen and I won't have achieved anything meaningful, I won't be able to support myself and I won't have the embrace of a lover to comfort me, to put his arm around me while we watch the sunset. Or... maybe I cry because I realize the world can be so beautiful, and whether or not I get to experience that beauty might be out of my control. Why do we believe that the world might offer these things to anyone?
Is it fair to expect an exceptional life? Perhaps we are just hiding a mundane existence, the repetition of everyday, in a fantastical idealism.
"I get all the news I need on the weather report... all the news I need on the weather report. Hey, I got nothing to do today but smile.
Here I am..."
So, uh, anyway, tomorrow (Fri) I start Chemotherapy.

Sunday, August 3, 2008

Hodgkin's Lymphoma, described in 1832 by Thomas Hodgkins, was one of the first cancers to be cured by first radiation therapy and then Chemotherapy. The Mayo clinic gives a 95% survival rate for the first 5 years if the cancer is caught early enough, 60-70% for advanced stages (like the formation of tumors). Wickipedia quotes survival rates of 90% while reminding you that the 6th edition of THE HANDBBOK OF CHEMOTHERAPY warns not to lose sight of the fact that 20-25% of patients die of the disease. Go figure.
Well, anyway, its official. The surgery seemed like a climax but the real story is in the biopsy. I have cancer.

Monday, July 28, 2008

It seems like weeks, but in fact only a few days have passed. The surgery went well, it went quickly. My hospital stay, while event filled, was brief. I am, indeed, writing this from home. By Friday afternoon I was out of intensive care and into my own room, thanks to the amazing care of some nurses. We should all have that much love to give. I went from blacking out the 1st time I tried to sit up to walking down the hall way in a day, and by Saturday afternoon I was home. I am thankful for the company I had before the surgery and the friendly faces I saw that evening. It was the difference between hope and fear, humor and sadness. Now it's about taking walks, building strength, being patient. I won't know the results of the biopsy until the end of the week, but if anyone wants to take a slow walk in the woods until then, Im game. Scott

Tuesday, July 22, 2008

Ok folks, here it is short and sweet. I will be in the hospital starting Thursday for 4-5 days. My surgery is at 12 noon on Thursday, July 24th. It will take 4-5 hours and then I will be in the intensive care unit after that until the next day. Anyone who might come visit me would be very welcome. The waiting room is on the 5th floor. I don't know what condition I'll be in Thursday night, but I wouldn't mind seeing a familiar face. Friday and on, come entertain me!

Kaiser Permanente Hospital
2425 Geary Blvd 
There are cheap public parking garages on O'Farrell and on Geary, between the hospital and Divisadero.

This surgery, well, it's more than I want to admit, just google thoracotomy, so anyone who wants to come help take care of me at home is more than welcome. I'm sure Jen will appreciate it also. I just don't know what to tell you I might need.
Jen's cell phone: 415-517-9659
Jen's and Robert's home phone: 415-333-6092

I remember cutting the top of my toe off over a beer (or two) and a sharp rock at the Grand Tetons. I was so sad at being so stupid... had I lessened my experience of such a grand place?! I spent the next day floating in a canoe, looking at ripples of mineral sands in the glacial clear water of Jenny Lake, reflections of sky and mountains. The next day I put on an extra thick pair of socks and some river sandals (shoes pressed toe, made big pain) and hiked 4000 ft to see the remains of Teton's glaciers.
You never know how things will turn, how you will handle that turn, but they do and you do and time keeps going.

Thursday, July 3, 2008

Monday, July 14th
Hello,  I must apologize for not writing sooner. It's as
if Ive farted and left the room, and the blame on someone else to bear. What do I say? By this time I thought I would know what 
to tell you, and by this time you would already know what that is.
Two biopsies, multiple acronymic scans and countless blood tests later and none of us knows what story to tell. It may not even be cancer,  but "fibrosing
mediastinitis": thats science for "tumor of unknown origin growing in the center of your chest".
     So I've been living life as before. The fevers have left and no other symptoms have shown themselves. I run, I hike, I eat lots of food, I gain weight, I yell at crappy drivers that almost run down pedestrians! ..and I wait. Next week Ill be undergoing a more intrusive biopsy, a "thoracotomy", otherwise known as surgery. It seems pretty serious- at least it will leave me knocked up in bed for a month with a serious dose of pain (and lets not forget the catheter).
     I just wanted to let you know where things stand, and what to expect... i.e. I will be in want of entertainment, be you a poet, an artist, a musician, a storyteller, a magician, a maker of bad jokes, a bearer of DVDs, or a just silly someone who cares, I will be calling you to come entertain me in the coming weeks. My surgery is Thursday, July 24th- I will be in the hospital for 3 or 4 days and then home in bed. Im bad at planning ahead, but in the next week I will try to post more information about visiting me in the hospital, when and where Ill be and how and who to contact to learn more. So stay tuned my friends, the sun rises everyday... Scott

From 5/28/08: We often watch nature as remote observers. We watch the processes and actions of seasons and organisms- the short lived flush of desert annual wildflowers after rain and the promise in a multitude of seeds, the dance of pollination each new generation of bees will perform, the regeneration of summer burned landscapes from winter rains- seldom discovering our own rhythms in these processes. We cycle through every day without noticing them... until one day something comes along to disturb them.
   Over a week ago I began having high fevers for no apparent cause. What was at first uncomfortable became disconcerting and so I went to the hospital. It turns out I have a large tumor in my chest. An aggressive and advanced stage of lymphoma may be likely. Soon I begin scheduling biopsies. The biopsies will determine the extent, the kind of cancer and what combination of treatments will ensue, though chemotherapy is almost certainly in the recipe.
   I don't know how to tell everyone, or what to expect in telling you all. I just wanted you to know. I might want to see you in the coming weeks and months. Its likely I'll need your help. Maybe I'll just need a letter or a phone call... but obviously I am no longer in a position to pretend that I don't need the help of the people around me. My biggest hope is to continue life as normally as possible over the coming weeks. That is all I know. I'm in a limbo where each day is what it is and comes when the sun rises and no more. I'm sorry about this letter and the news it contains. It almost seems unthoughtful to burden you with it. Its just one of those things I wanted to get out of the way now. Scott