"Normal-looking" marrow

Hey All,

Well, it's not often that I get to say anything about myself is "normal," but I just wanted to pass along a happy update that my marrow "looked normal" according to my Doc. last week.

We've now started maintenance, and I'm still crazy-tired from recovering from the last round.  I'm rather beat down, and getting a little impatient to feel better, but I just keep reminding myself that it's been a long, long road, and I should expect recovering to take some time as well.

Almost all of my energy is going into getting back to work (I apologize for not updating more promptly), but I promise to have some longer and more reflective posts once I get a bit of energy back.

Thank you all so much for your support and for the time being I'm going to continue sleeping, getting back to work, and enjoying being cancer free!

I hope this night finds you all well.

sam

Hospital Stay #3: "We're going to need a doctor and a priest" edition

Sometimes life is all too predictable.  I wrote in my last post that I had just finished my last shot of Cytarabine, one of the drugs responsible for putting me in the hospital.  Last week, I began feeling really off and woke up one day with a low grade fever and absolutely no design on getting out of bed.

I asked Mum to email my study coordinator to see if I could get into the see the doctor the following day, and within ten minutes one of his head nurses called and said "you need to come in right away, you have 0 neutrophils."

We headed right in, and it's a good thing, as by the time we got in there I was grasping to maintain conciousness.  I knew it wasn't just in my head when one of the nurses saw me staggering, grabbed me by the armpit to brace me and walked me straight back through the "employees only" hall to get me to the closest bed in the chemo room.  Turns out the fever had dehydrated me something fierce so I had crazy-low blood pressure.

They got some fluids in me, took 60 ml of blood to check for infection (that's a lot), took a chest x-ray complete with adhesive nipple markers applied by the technician (always fun), and then admitted me to the hospital.

I was put in room B6/660, and immediately thought "it can't be good to be in a room that has the mark of satan."  When the nurse case manager asked if I'd like to see a chaplain or religious leader, I said no, but chuckled as I thought I should say "I'm going to need a doctor and a priest."

I apologize to all of you who haven't seen "The Exorcist" and are completely lost.

To make a long story short, I spent a few nights in the hospital, but the blood cultures, chest x-ray, chest CT Scan, and Sinus CT scan all came back clear, so at my request they sent me home early enough to watch the Packer game at home.

I'm now recovering at home and sleeping about 18 hours a day, but my marrow seems to be recovering quite well given it was doing next to nothing for about 3 weeks.

Thursday I'm scheduled for what I hope to be my last bone marrow.  If that comes back clean, we'll move onto maintanence and I should actually get my life back.  If it doesn't, well, instead of reaching the summit this climb will get a hell of a lot steeper.

It's strange and a bit unnerving having so much ride on a single test -- good vibes would be very, very much appreciated.

All right, usually I try to keep some semblance of order in my posts, but this isn't expository writing class, and this past year and change has been crazy, so I'm going to spew some random thoughts...

As we come toward what I hope to be the end of rough treatment, even after a full year, I'm still left in disbelief over the events of the last year.  I've been through something that very few people can comprehend, and I wouldn't want them to be able to.  It sounds funny, but even I have troubles comprehending or believing what I've gone through in the last year.  I figure that if I'm able to make it through the door and back to the other side, I'll be able to use the phrase "I've been through hell and back" with a great deal more authenticity then most.

If I'm completely honest, I haven't really allowed myself to deal emotionally with the reality of everything that has happened.  If this test comes back clean, I'm a little concerned that  the floodgates will open.  There are so many people who have helped me out so much without even realizing it, people that I just want to bear hug, but I probably won't because I know that I'll start crying like a 12 year old girl, and uncontrollable blubbering and rubbing one's snotty face all over someone's shoulder is neither a good way to thank them, nor a good public look.

Finally, I'm a bit conflicted because I feel like going through cancer treatment should be a life changing event, and I feel as though all I want is to return to my life as it was before cancer.

You see all of the life lessons that cancer brings with it -- never take time, friends and family, or health for granted; most things just aren't worth getting upset over; life isn't fair, get over it; and others -- are all lessons I learned when my Mum went through cancer treatment.

As a result, for as long as I can remember, I've lived my life with these understandings.  My friends all know that my love of life, adventure and tomfoolery, are all nearly unmatched.  I've always tried to squeeze every bit of life out of every day -- a habit that has lead to inebriated and euphoric late night skinny dipping in summer thunderstorms and late night discussions with friends of such length that I've rolled home on my bike as the light of dawn appears on the horizon.  I've always loved and laughed freely, and always accepted people for who they are -- In my opinion the true key to happiness.
 
The more I think -- the more I write -- the more I realize that instead of being concerned that cancer hasn't greatly altered my perspective on life, that I should be grateful that I've lived such a fun, fulfilling, and exciting life, that I just want to get it back.

I can be accused of a lot of things, but no one can accuse me of failing to squeeze every last drip out of life.

All right, enough random thoughts for one night.  Thanks for being a portal to bounce my thoughts off of.

I hope this night finds you all enjoying life.

Sam

A Cytotoxic Cell-abration -and- Declaring Nuclear War on Leukemia

I just finished my 32nd, and last scheduled, subcutaneous shot of cytarabine. 32 times I have pinched up skin in my stomach or leg, jabbed a needle into my stomach or thigh, and meticulously emptied this toxic drug into my system.

This follows last Monday's final scheduled bag of cytoxin.

Like most chemo drugs, I have a love-hate relationship with cytarabine and cytoxin.

Both of these drugs are intentionally designed to kill rapidly dividing cells in the body including not only cancer cells, but also healthy hair cells, cells that make finger and toe nails, cells in the mouth and digestive track, and cells in the blood and bone marrow.

These are the only drugs that have made me vomit, they have decimated my blood counts and brought my immune system to zero. They've sapped my energy for weeks, and made me black out whole days or weeks. They led to July's infamous infection that put me in the hospital for 9 days.

In short, they are not easy drugs to take.

But, without these drugs, there is almost no chance that I would be around tonight sitting next to a lit Christmas tree, listening to Bing Crosby and Bob Dylan Christmas music, and typing this post.

In many ways, engaging in chemo is very akin to declaring nuclear war on cancer. Like Truman's decision to bomb innocent civilians in Nagasaki and Hiroshima to end the Second World War, oncologists and their patients decide to drop an atomic bomb on the body in the hope that the death of millions of good cells will bring with them the cancer cells, and many more healthy cells will be safe to thrive as a result.

Tonight, even with my counts decimated to the point that I needed to go to the clinic for a bag of platelets and two bags of blood, I could not help but celebrate the fact that, if all goes well and I can avoid a relapse, never again will I need to dance with the vindictive little devils that are cytoxin and cytarabine.

Much like I hope to never see the use of real atomic weapons in my lifetime, I also hope to never attack my body with these cellularly atomic bombs again.

To quote one of my favorite holiday songs, let's hope for:

"A very Merry Christmas
And a Happy New Year
Let's hope it's a good one
Without any fear
War is over, if you want it
War is over now."

All right, it is the holiday season, and one of the many goals of this blog is to encourage acts of good will. Last year, together, we raised well over $1000 dollars to help fund the construction of the Restoring Hope Transplant House near Madison. This brought me more happiness and cheer than you can imagine. So, in the spirit of the holiday season, here are some ideas to help out others and help make this world a better place.

1. Donate to the Transplant House Again.

The transplant house is still short of the money it needs to open its operation. It's founders have worked tirelessly for years trying to come up with the funds needed, and this is a cause worth supporting if you have money to charitably devote. You can learn more and help transplant patients by giving here:

2. Donate to Clean Wisconsin.

Clean Wisconsin is the non-profit environmental advocacy organization that I work for. We work diligently to keep Wisconsin's pristine areas clean, and restore those that are polluted. We focus on clean air, clean water, and push for clean energy. I work for this organization because I honestly feel that Clean Wisconsin is one of the most effective organizations at protecting and preserving our environment -- something important for a guy who treasures the outdoors as much as I do.

Beyond being a damn good environmental advocacy organization, Clean Wisconsin has been a family to me and has helped me through this last year -- unquestionably the toughest in my life. They've demonstrated their unrelenting support, stayed by me in the roughest of times, made me laugh, and made me feel normal throughout this whole absurdly crazy adventure.

I honestly don't know how I would have gotten this far without the organization and it's people, and I would strongly encourage you to give if you're able. You can learn more and donate here, and I promise we'll work hard to make your money matter.

3. Donate Blood.

Sometimes we don't have the extra cash to donate, but luckily, there are hundreds of ways we can volunteer our time (or our blood), to help out others.

This year I have needed to fill up on blood more often than I've had to fill up my Subaru. Without the nameless and faceless donors who so selflessly donated their blood and platelets, I never could have made it through chemo.

Please consider donating blood and helping out others, like me, who couldn't live without it.

All right, I hope this holiday season finds you all well and chocked full of merriment.

-Sam

Inquisitive Eyebrows -and- On the Road Again

"Where ignorance is bliss, 'tis folly to be wise." These wise words from Thomas Gray generally apply to life. I'm now learning the hard way they're also applicable to my follicle state...

Because the chemo drugs knocked out all of my hair before radiation, I had no idea which hair loss was from chemo and which was from radiation.

Now that some of my hair is growing back, I was distressed (actually amused) to find that the outside of my eyebrows (within the field of radiation) remain completely bald, as the inside of my eyebrows begin to grow thickly for about 3/4 of an inch.

As a result, I now have a constant expression of puzzlement and inquisitiveness... At least I don't look angry like Uncle Leo (pictured).

So, if you should run into me on the street, I'm not confused -- it's just the eyebrows...

For a quick update, we're now back on track and I'm getting the rough stuff right now (the same stuff that put me in the hospital last time). It's beginning to hit me, but I'm so excited about getting close to a finish line that I remain in really good -- nearly euphoric -- spirits.

Last week Monday I got what I hope to be my final bag of cytoxin. I never thought getting cytoxin could be a celebration, but as I sat in the chair listening to music, I couldn't help but smile and rock out as I thought that this could well be the last of the toxic stuff that I watch drip into my veins.

Tuesday, snow, snow and more snow. 18 inches here in Madison. I was so excited that I headed out into the night for some "sidewalk skiing" despite my inability to find my poles. All went well until a few blocks away my skis began to slide out from under me and I went ass over teakettle in a valuable lesson regarding both Newton's Law and Karma (for gloating about a snowstorm.)

Not wanting to come in, as I would have felt like Ralphy from "A Christmas Story" who had just shot himself with the Red Rider BB Gun, I continued skiing with my elbow and my pride a bit worse for wear...

That night I had another 3am "here we go again," session of blagejeviching, and Wednesday morning I woke up unable to move my elbow as it swollen to a point that it looked as though I was trying to smuggle a racquetball under my skin.

It healed rather quickly, however, and I'm hopeful that I'll get back out on the skis this week -- with poles this time.

My good friend Phil has been in and out of town. It was great to see and spend some time with him. He and I know each other a little to well, and many who have spent time with us have laughed as he and I bicker like an old married couple. We really know how to get on each others nerves, but we have also shared some of our greatest adventures together, and it was fun both to goof around and to reminisce about absurd adventures of the past.

I've always meant to write some "Phil stories" on this blog, but I don't even know where to begin...

That's really most of the excitement. I'm entering what I expect to be a really rough three weeks, but eagerly anticipating getting it behind me -- and hopefully getting back to life.

Any good vibes you can spare would be appreciated.

Festive holiday vibes radiate toward all of you, from me.

Take care, and happy holidays,

sam

Stalling in the Soft White Snow

There is something remarkably magic about the first angel-white snowfalls in winter. Every year, the first snow brings out the innocence and childlike enthusiasm in all of us. Like most signs of the changing seasons, snowfall renews and rejuvenates my spirit.

I can't help but become a small child filled with joy as I try to catch soft white flakes on my tongue during the first days and nights of snowfall. Like the city lights reflecting off the white roofs of houses, part of me glows from deep inside.

This year I've been fortunate to have two first snowfalls. Last week I drove through the beautiful deep woods of Northern Wisconsin on freshly-snowy gravel roads (a barn near Rhinelander is pictured above), and tonight in Madison streetlights reflecting off of snow lights up the streets and houses of my neighborhood.

Well, my counts were too low to start the last leg of rough chemo on Monday so the bad news is we seem to be currently stalled out. The good news, however, is that I feel great and have been fortunate to have the health to truly enjoy the first snowfalls of this winter.

Take Care,

Sam

###

The Silence and Sounds of Snow

As I sit in my apartment

sipping warm cider,

the snow falls silently

outside my windowsill.

The silence of this season’s

first late-night snowfall

provides peace, and

quiets my restless soul.

As I quietly and contentedly

watch the soft flakes silently fall,

it occurs to me that snow

also has many sounds.

Snow squeaks and whooshes

under my thin Rossi skis,

as I speedily glide through a

dense grove of evergreens.

It illicits the innocent laughter

of euphoric young children,

who sled and make snow-angels

on the school year’s first snowday.

Sometimes, after a snowfall,

the surface of the snow is Icy

and, as I walk, each step

provides a satisfying “Crunch!,”

reminiscent of a silver spoon

breaking the caramelized crust

of a freshly-torched crème brulee.

When I hear any of these

familiar sounds of snow,

my usually active mind

falls silent, and I slowly

drift into the strong

and wonderful memories

that these sounds summon.

As I watch the snow

fall silently outside my

windowsill, from the warmth

and comfort of my Apartment,

my restless soul feels quiet, and

I am simultaneously thankful

for both the silence as well as

the many distinctive sounds of snow.

Happy Hunting Season (and Thanksgiving...)

Other than remarkably similar capitol buildings, the world I grew up in is entirely different than the Madison-world where I now live. Comparing the Northwoods to the Capital city is like comparing fried venison sausage to a vegan tofu sandwich, and I love them both for their strikingly different characters.

The locality where we grow up shapes us in profound ways, and as much as we might sometimes try to shed it, the character of our hometowns becomes part of who we are as individuals.

The antique guns that hang on the wall of my home office and the lamp with deer antlers that sits at my desk provide some proof that we may leave our hometowns, but our hometowns never leave us.

Last week my counts were still a little too low to begin treatment, so we decided to wait until this upcoming Monday to give it another shot. This actually worked out brilliantly as it allowed me to come home for Thanksgiving and spend time with family and friends.

This year I certainly have more to be thankful for than ever. Most of all, I am thankful simply for being here this Thanksgiving, and to have the opportunity to spend it at home with family and friends.

Driving around the Northwoods, one cannot escape noticing how different it is culturally from Madison. Hunting season up here is celebrated as fervently as religion. If you think I am over-exaggerating, I would urge you to enter a grocery store in Rhinelander the Friday before the opening of hunting season. Not only will the store be busier than any other time of year, but also 9 out of 10 of the shoppers will be wearing at least 3 articles of blaze orange clothing.

As we drove up, I laughed as I realized that nearly all of the messages on motels, restaurants, resorts, and other highway business signs read "Good Luck Hunters," and then included "Happy Thanksgiving," almost as an afterthought.

Hunting in the Northwoods is a holiday, a tradition, and a rite of passage so intimately tied to our culture that I cannot imagine life up here without it.

As I write, I notice that we have now moved from Thanksgiving Thursday to the aptly named Black Friday -- The largest retail shopping day of the year.

Every year, Americans get injured or even killed as mad mobs rush into Wal-Marts and Best Buys across the country in a rush to find the best sales.

I don't want to be overly critical, but what does it say about our society when in other cultures people may get trampled in religious pilgrimiges and in America we trample each other to death in a mad rush to purchase reduce-priced consumer goods.

While some may argue that Christianity is the most common religion in America, I might argue that it is in fact Materialism.

I hope that's not true. But, unfortunately, it's how I often feel.

Now, as avid readers of this blog will know, late-night consumption of sugary breakfast cereals is a guilty pleasure of mine. In fact, sugary bowls of Life, Lucky Charms, Frosted Flakes, and others often fuel me as I write for this blog.

Well, this Blog Strong blog post was fueled by Cocoa Krispies, and as I poured the box I couldn't help but read a big banner that explained "Helps Build Your Child's Immunity!..."

All of this time the answer to raising my neutrophil counts was right under my nose -- Looks like Monday I'll be eating Cocoa Krispies for breakfast...

I hope you all had a delightful and fun-filled Thanksgiving.

Sam

And finally, a poem to freak out my Madison friends...

“Opening Weekend”

I.

On this foggy 40-degree morn

in Northern Wisconsin

the swift snaps of rifle-fire

continuously pierce the morning air,

sending me back years

to the old hunting camp.

Suddenly, I am once again the

twelve-year-old boy lying on

the 20-year-old couch, warmed by

a scratchy army-surplus wool blanket,

the night before my first day of hunting season.

Too excited to sleep, I lie awake until

3am, fully knowing that I must rise

at four-thirty to beat the dawn to the

tree stand constructed years before

by my father and grandfather.

I load and shoulder my

bolt-action Remington 243,

and walk through thick trees

in darkness, trying to contain

a strong feeling of fright.

There is something about the

deep woods in darkness that

closes in on even the most

seasoned outdoorsman,

especially an Imaginative

outdoorsman.

II.

After getting to the stand, I

shiver in the dark, and sleep

soundly for two hours.

When I wake up, two deer

stand at my bait pile.

As the blurriness of

sleep leaves my eyes,

I realize that it’s Erick and Amil,

two twin yearling bucks that I

recognize from bow season.

I sip coffee as these twins

crunch away on the corn and

apples of my bait pile.

I utter some comments

as if they can comprehend.

“Are you two as cold as I

am on this crisp morning?”

(I’m sure most hunters do such

strange things; it can get quite

lonely out in the woods alone.

Most, however, likely would

never admit to such

bizarre behavior.)

At 8am I unload my rifle

and scurry down the

wooden ladder of my stand.

Time for breakfast.

I laugh as I walk by

Erick and Amil crunching corn,

looking back at me

lacking any trace of concern.

“The big bad hunter has hunger,”

I explain.

“You know, you two

should really be a great

deal more careful, or

you could get shot,”

I say as I laugh

heartily by myself.

III.

The smell of sweet rolls

baking, as well as

camp eggs and turkey sausage

sizzling in cast iron pans

meets the smell of pancakes

and maple syrup, providing an

unparalleled olfactory experience

as I enter the warmth of the

steamy-windowed tar-paper shack.

Dad was the cook and always

the first back in the morning.

I was always second,

Grandpa third,

with Skubie and Josh

trading the fourth and

fifth positions.

(Coincidentally, this also seems to

rank how seriously each one of us

took deer hunting.

On second thought,

Perhaps that’s no coincidence at all.)

After the nearly endless layers of jackets

and insulation were removed,

we’d sit and wait patiently but hungrily

for the morning’s meal at the square

wooden table.

The sweet scent of kerosene from

an old lantern placed in the

center of this table would

weigh the warm air of the cabin.

When all was ready and warm,

Dad would bring pan after pan of

delicious steaming food.

The hunters would relay the morning’s sightings,

then bull-shit about where the big

bucks might be, as we gorged ourselves

on the breakfast Dad had prepared.

IV

After breakfast, my day became divided

equally between reading on the couch

in the cabin, taking naps, and hunting.

I rarely shot anything.

This might be the result

of Grandpa’s and my

affinity for naming deer.

It wasn’t only Erick and Amil.

There was “Old Thumper,”

“Merdle,” and the aptly-named

“Three-Legged Leroy.”

In years of hunting,

I only shot one doe,

and only did so then

because I had a strong

craving for Venison.

V.

Our hunting camp broke

all of the stereotypes.

After dinner, the five men

spent nights chatting,

reading, playing chess,

and building card houses

under the warm glow of

the kerosene lantern.

In my many

years of hunting,

I cannot remember

anyone ever having

so much as a single drink.

VI.

We sold the hunting land

and the cabin some time ago,

but the memories made there

will forever live in my mind’s eye.

I don’t miss hunting,

but I do deeply miss

our hunting camp.

Today the square table where we sat

for all of our camp breakfasts

sits in my apartment’s dining room.

The kerosene lantern that provided

the warm light for so many chess matches

and the construction of so many card houses

still sits atop that table.

Every time I catch the

sweet scent of Kerosene

weighing the air of our apartment,

I can’t help but find myself once again

back in the cabin during hunting season.

And this morning, as I awoke in Rhinelander

to the snapping sounds of rifle-fire,

I found myself once again a young boy

lying awake on a 20-year-old couch,

excited about his first hunting season.

One Year, How I Got Here -and- Blog Stong's First Birthday

After writing that last post, I realized that it's been exactly one year since starting treatment.

One year ago today, right about this time, I was lying in bed wondering what the day, and the next year would bring.

One year ago today, my parents drove me to the hospital as I stared out the window, wondering if I would ever walk the streets of Madison again.

One year ago today, I was spending a night in the hospital for the first time in my life, frightened, and had no idea what to anticipate.

One year ago today, if I'm honest, I thought it unlikely that I'd be around to type this blog post one year later.

One year ago today, while sitting in a hospital bed, I wrote out what became the first post on this blog.

I like working at my desk better...

In the last year, there have been some rough patches when I thought I'd never make it through. There have been many.

But each and every one of these rough patches has been met by emails, cards, comments, and simple words of encouragement that have carried me through.

In short, you have all gotten me here today, and I'll never be able to thank you enough.

The picture above was drawn and written by my Best Bud Jacques, the son of my friend and former co-worker Shane. It hangs above my desk at my home office and I look at it every day. It is only one example of the thousands of mementos and messages that I keep that have helped me cross the treacherous seas of treatment over the last year.

I had originally planned on doing a long list of shout outs including everything that has helped carry me through then realized that there have been so many that I could never list them all and that to try and miss some would be an injustice.

The truth is that each and every person reading this post deserves my great thanks.

Thank you all for getting me here today. I appreciate all of the little things that you've done (including reading this blog) more than words can express.

Sam