Sometimes Halloween costumes just make themselves. When I awoke this Holiday morning with the realization that I was bald, skinny, pale, awkward, knobby-kneed, insomniac, and hyped-up on a miraculous cocktail of mind-altering drugs that illicit some remarkable hallucinations -- how could I not celebrate this Halloween dressed in tribute to the late gonzo journalist and cult hero, Hunter S. Thompson?
Mad props to Katie for quickly and spontaneously finding the props to make the costume work.
Today became a perfect day, spent gallivanting about our quiet neighborhood taking pictures with my adorable girlfriend in the childlike pleasure that Halloween always brings.
Our pleasant day is being spent a bit more low key, and enjoyable, then the absolute Madness that infamously overwhelms State Street every year on this date. The massive Badger win today should only add to the festivities and debauchery.
Instead, of entering or spectating the madness, I plan on staying home with Katie and my parents to watch Mystery Science Theater 3000, "Werewolf," one of my all time favorite films. Few things in life beat the entertainment value of watching a movie that tries so hard but fails to thrill and entertain only to succeed masterfully at being produced so poorly that it brings shrill laughter, cheer, and delight.
Enjoying life and wishing you all well -- On this day, don't forget to find your inner child and dance with delight in the revelry of Halloween.
A body's inablity to paralyze itself during dreams can make for some interesting living, as you've seen from previous blog posts.
This morning I have a very vague recollection of a comical event that must have confused Katie a bit to say the least, that I thought I'd share.
After a solid hour of sleep, I have a hazy recollection of blocking Katie's access to the bathroom door as she attempted to get in to ready herself for work.
"The editor man in the bathroom says that I must pass the first bean before granting you access." I said with conviction.
Receiving a funny look I pressed on explaining the situation:
"I think that you, my friend, have found yourself in quite a literary pickle."
After some persistent convincing that there was no editor man in the bathroom she lead me back in bed, I laid down, and that was the end of the exchange between me, Katie and the man in the bathroom.
Like the bone marrow of a perfectly roasted veal ossobucco, today congealed into a perfect, tender morsel of opportunity, flavor and experience.
All of this started this afternoon, when I found out that my own marrow recovered remarkably well from the first bit of rough chemo this round, and I knew I had the temporary immunity to go to a nice dinner.
This was convenient in timing as it comes two nights after Katie was a saint and stayed up all night to take care of me as I writhed in the pain and muscle convulsions brought on by steroid withdrawal (I couldn't even get out of bed to go to the bathroom and she patiently stayed up with me all night, taking care of me, then got up and went to work and a doctor's appointment of her own without complaint -- can you say an angel...)
It also fell on a day I reached a first last -- My first final dose of a chemo drug, doxorubicin, one I'm happy to cross off the list because it causes heart damage and some nasty GI Tract issues (Never again will I watch the red poison ooze into my vein; Goodbye and Good Riddance!!!).
And, finally, it falls a couple of weeks before Katie and I will have been dating for seven years and I know that when the date roles around I will lack the immunity to take her out, so I wanted to "Carpe the F-ing Diem" and take advantage of the opportunity.
So in short, I was in the mood to treat her to a really nice dinner and spend a couple of hours in her company around insanely decadent foods.
This was the context of my thoughts as I smeared the roasted bone marrow of a perfectly braised Veal OssoBucco on bread as Katie and I enjoyed a long, slow, death-row quality meal at Otto's, a warm, inviting restaurant on the West Side of Madison on this cold, rainy Autumn evening.
Is it sacrilegious to eat bone marrow when your fighting a cancer of the bone marrow? I really don't think so.
I would argue that if anything the greatest value in the struggle of cancer is in the recognition that we are to strive to enjoy every morsel that the earth has so bountifully offered, that we are to suck the proverbial marrow out of life every moment we are given the chance.
That the greatest tragedy in life lies not in misfortune but in lost opportunity. That to injure oneself while trying a new flavor, to see what lies below an unturned leaf, to climb down a precipice and see a waterfall few others have laid eyes on, to dive in and swim around the next bend of a mountain icy stream is the context within which we should strive to live life; that to mar oneself in the pursuit of experience and adventure, is inexpressibly better than the risk that that a life wasted by the timidity of ensuring the safe passage of time brings.
Life is nothing if not an opportunity to find beauty, poetry, flavor and happiness in a forward-moving and entirely unexpected adventure into the unknown.
I have troubles believing that any creator that put so such a wonderful diversity and richness of flavors, colors, landscapes, experiences and contrasts on this planet would want us to waste it by forgoing decadence and enjoyment. Too me the greatest sin would be to be given the gifts endowed by life, the diverse palate that the creator has laid before us, and to let it pass by unexplored and inexperienced. Why would a creator give us such a wonderful world with so many brilliant things and then want us to deprive ourselves of them? I have never understood puritanism, and never will.
Simply stated I feel that the basest of pleasures -- Food, Love, Sex, Fermentation, Camaraderie and Travel -- are the greatest gifts any God above gave us, and that the greatest sin would be to die ignorant of the wonders of our planet, our universe, and our lives.
One might think that having a cancer of the bone marrow -- that having my own bone marrow systematically drilled into and sucked out through a needle six times now -- might dampen my appetite for eating it.
Quite the opposite, I found myself thinking that it would be such a waste to allow such a morsel to go to waste and that I only wish that my eventual death -- whenever that might be -- could produce something as wondrous as the flavor, texture, comfort and poetry that the calf's death had brought in the form of the roasted marrow tonight.
Tonight I sign off with the thought that the greatest worship of our creator is in the enjoyment of all he/she/it has given us.
Perhaps this philosophy makes me an existentialist, perhaps that's the influence of my grandfathers, or my parents. Perhaps it's Harrison and Hemingway and Camus. Perhaps its my time spent outdoors in introspection.
I like to think this philosophy is simply what makes me, who I am.
Tonight I am thankful for my life and for the time that has been given to me, for my loving family and kind friends, for the smiles of strangers, for sex and beef and scallops and creme brulee, for whiskey and for wine, for first snows and Fourth of July's, for forests and rivers and trout, for the company of good friends and nights filled with good cheer, for music and dancing, and for long naps taken in front of warm wood fires on cold winter days.
-Sam
At the risk of you all thinking I've lost my mind I've never hid the mind-expanding experiences associated with steroid withdrawal -- a euphemism for hallucinating. In this spirit and in a deeply abiding trust that you all won't have me committed I'll include as a post-script a poem inspired by last night's lack of cortico-steroid in my system:
Traveling to the Land of My Ancestors:
Last night between the hours of 4:00 and 5:00
My soul was wisped away to the land of
my ancestors.
I floated from this earth, and while
my body and brothers on this planet measured
a mere hour of time passing,
My soul spent months in the fields
as real as the flesh, blood, andbones
of those who came and left this known realm
before me.
Although I have never seen it with my physical eyes,
My mind’s eye explored this spirit world,
A land that I know that I have walked for millennia.
A land where I know the stories
and can trace every bend of the rivers
that flow with the blood of my great grandparents,
and those who came before them.
A land where the amber grains caress my skin
with the DNA that connect me to my first family
that came to this land, watching the life-giving herds
of Buffalo roam the endless expanse.
As I come back to my body lying in my bed,
I know that I am privileged to have been given this vision,
and to know that someday I will reunite
with both the family and friends I have known and lost
as well as with those that I have not yet met but know from blood
It is a rare but unique quality to experience, food and literature that a single moment can become part of who we are, change us down to our core, and expose revelations that render us forever different.
Nearly 11 months ago as I sat at the precipice of the unknown in a small 6th floor room of UW Hospital I had beside me a compilation of assorted poems at my side. Of a lengthy volume, one changed me forever, and rarely a day has gone by without my thinking on it. So, without further adieu, Tom Hennen's "The Life of a Day:"
"Like people or dogs, each day is unique and has its own personality quirks which can easily be seen if you look closely. But there are so few days as compared to people, not to mention dogs, that it would be surprising if a day were not a hundred times more interesting than most people.
"But usually they just pass, mostly unnoticed, unless they are wildly nice, like autumn ones full of red maple trees and hazy sunlight, or if they are grimly awful ones in a winter blizzard that kills the lost traveler and bunches of cattle.
"For some reason we like to see days pass, even though most of us claim we don't want to reach our last one for a long time. We examine each day before us with barely a glance and say, no, this isn't one I've been looking for, and wait in a bored sort of way for the next when we are convinced, our lives will start for real.
"Meanwhile, this day is going by perfectly well-adjusted, as some days are, with the right amounts of sunlight and shade, and a light breeze scented with a perfume made from the mixture of fallen apples, corn stubble, dry oak leaves, and the faint odor of last night's meandering skunk."
Now, I bring this up nearly 11 months after having first read it because today was one of those perfectly well-apportioned autumn days.
It started simply enough as many of my days do, getting up, showering and heading to the clinic for counts (everything looks all right, but is starting to fall and the platelets are causing a bit of bleeding -- no worries, all to be expected at this point).
After getting counts and getting some work done at the clinic, we escaped unbelievably early (still in the early hours of the afternoon,) so I decided that Mum and I should seize the day and take advantage of the time, the beautiful fall weather, and my rapidly decreasing immunity by taking an afternoon field trip to Milwaukee to get a walk on the city streets and have a bowl of the miraculously restorative and curative "Real Chili" which has existed in Downtown Milwaukee since 1931.
As my eyes have finally overcome the lingering effects of steroids and were able to focus on the clear fall landscape, I was overjoyed as I looked over the golden hues of dried crop fields, red maples, and bright sunshine. Simply put, today creation could not have been outdone on the roads between Madison and Milwaukee. It was a statement that words cannot summarize.
As we came into Milwaukee I saw some of my favorite sites -- The beautiful Ball Park were I've enjoyed so many brewers games with friends and family both as a child and in more recent memory at the new and beautiful Miller Park.
Then downtown Milwaukee where we'd visit once a Winter and walk the streets of the "Big City," and stay in nice hotels. We'd inevitably walk out on the cold streets and warm our stomachs and souls with a heaping bowl of Real Chili -- My Dad's favorite college eatery at Marquette, my favorite when it was in Madison, and a staple anytime we were in the area.
A single taste of The Marquette Special (Chili Beef served over beans and rice with Cheese and oyster crackers) brings me back to my best days and nights in college, to the trip my Dad took to Milwaukee to watch the U.S. Open tennis tournament, to fun and festive winter family weekends, and to some of the best memories my mind holds of time spent with close friends and family.
As Mum and I parked Downtown and headed to the chili bar, my appetite grew, the air was crisp and refreshing, and the warm sun on the back of the neck revived the soul.
And the bowl of real chili was everything I expected it to be and more. Food really can be that powerful.
Afterword, we drove to the Milwaukee Public Market and walked the historic third ward where we got scrumptious cookies and chai tea to enjoy en route home toward Madison.
Overall, a truly well-proportioned day. One simply cannot ask for more in life.
Today I know that a rough couple of months lie ahead, but I am left so appreciative of each beautiful day, of creation, and of the quality time I am able to spend with my friends, families, and close ones. Thank you all for being such a monumental support to me in my life, and for continuing to follow my writings and my journey.
The finish line is near. For the first couple rounds of chemo, it seemed an abyss that one could never climb out of. Looking at a year of rough seas ahead when you're already seasick is a dim prospect indeed.
But, I did the only thing that I could -- pressed on -- and this week, providing my counts are high enough, we'll start round 6 of 6.
This last round promises to be another hellish affair, but I'm as ready as I'll ever be. The final sprint to the finish line is always the most painful part of a race, the night is always darkest just before dawn, and many other metaphorical cliches...
On the topic of endurance sports, I ran a marathon this weekend. Well, that's not exactly true... An employee (Erin) of an environmental advocacy group that we often work with ran a marathon with the Leukemia and Lymphoma Society's team in training program. One of my colleagues donated in my honor (thank you, Wheeler), and Erin tied the names of everyone who had donations in their memory or honor to her shoelaces. I hear that Erin finished the 26+ miles, and she deserves congratulations.
Those of you who know me well know that I've always spent my life in pursuit of adventure. My general philosophy on life has been to escape long enough to experience some terrific stories, come back just long enough to share them with some friends, then head out on a new adventure to build some new material.
This adventure has tended to take two forms that often overlap with one another -- exploring the outdoors and participating in endurance sports.
I suppose it is natural that I looked to fighting leukemia as an adventure as it has been the longest and most challenging endurance competition of my life -- I can only laugh as I look back and see that I chose to subtitle my blog "the leukemic adventures of Sam Weis" so long ago now.
The outdoors are an indescribably important part of my life. The influence of my grandfather -- who took me fishing beginning when I was three, -- the experience of growing up in the northwoods and working in a sporting goods store, combined with my sense of adventure and strong curiosity, all intersect to provide a nearly unparalleled appreciation for nature.
The closest thing to religion I have ever found is standing on the shores of a pristine trout stream lost in the wilderness, with the smooth cork of a fly rod in my hand. I will never understand creation, but I am left speechless and in awe of the world anytime I venture past the boundaries of land tainted by the destructive tendencies of man and head into the wilderness.
Jim Harrison says that there are two types of people in the world. Those who, if rich, would live in a palace, and those who would live in a cabin. Many of my best nights have been spent in a tent.
Which brings me to the Noonmark Cafe.
One of my favorite outdoor trips is backpacking in the Adirondack Mountains State Park in upstate New York. One of the unique features of the park is that communities settled within the parks boundaries before it became a state park, and are still allowed to exist and thrive in the park today.
As a result, the park is big enough that one can get lost in the wilderness for days, but small communities within the park provide a bit of comfort and history when you come out.
Now, I love backpacking. I love to leave the "conveniences" of chirping cell phones, laptops, cars, and the 24-hour news cycle behind, strap all my needed belongings to my back, and disappear for a few days. I find this to be a cleansing and restorative experience, and I try to do it at least once or twice a year.
And the best part about backpacking -- I also love it when it's over. Sleeping on a hard floor, fearing being eaten by bears, eating dehydrated food, shitting in the woods, and having to purify every drop of water you drink makes you realize just how many everyday luxuries we take for granted.
Inevitably after a few days in the woods of the ADK, as we begin to turn back and head out of the woods, my mind begins to wander to the Noonmark Cafe.
The Noonmark is tucked away in the heart of the high peaks region of the Adirondack park. What makes it so special is that there is nothing special about it -- it's just a small place that makes the calorie-heavy, tastey food that only tastes so good after you've spent 5 days deprived of hot, well-cooked meals.
It's the type of place where they don't care how bad you smell or how dirty you are, and where you could care less that you haven't bathed, showered, changed, or shaved in five days. It's the type of place where you can get a burger with fries smothered in gravy and wash it down with a blueberry muffin the size of your head. In short it's my kind of place.
And after 5 days in the wilderness, on the last night of a trip, I would salivate as I fantasized about hiking out and going to the Noonmark cafe in the morning.
And the Noonmark would never fail to meet my expectations when I got out of the woods.
On the eve of round number six, I look at it as the dawn of my last day in the woods. I still have to pack up camp, strap on my pack, and make the long hike out of the woods, but I am eager with child-like anticipation as I know that on the other side the Noonmark cafe, and my plate of fries smothered in gravy, awaits.
Posts
