On Steroid Withdrawal and Small Victories

I'm quickly learning that chemo, like life, provides challenges we can never expect or anticipate.

With the first stage of treatment complete, the doctors are now tapering me off of an extremely high dose of Prednisone, a potent steroid, to prepare me for the next stage of treatment. As a result, I'm beginning to experience effects known as "steroid withdrawal" that I can expect to worsen over the next week as I cut myself off. I had never anticipated that coming off of a chemo drug would be my greatest challenge yet.

It is a tough decision for me whether to share with all of you all of the challenges I'm going through because I much prefer to spread cheer than concern, but I also want to document my journey, and realized again today that many of the greatest victories come from the greatest challenges. In this spirit I will share openly with you my experience good and bad.

Coming off of prednisone, I'm a physical and emotional trainwreck. My entire body feels battered and bruised, my muscles shake uncontrollably at times, and I feel weak, fatigued and vulnerable. I get angry or begin crying on a whim -- a real nuisance for someone who really hates emotion. Once I lie down, it takes every ounce of mental will to get back up to eat or take a medicine.

After spending two days in my apartment, I finally summoned the energy today to go for a walk around my neighborhood with Katie (my girlfriend). It's one of those beautiful snowy days in Madison that makes you feel alive, and just getting out felt terrific and invigorating. For a guy who used to bike 100 miles a week on a regular basis, and snowshoe up mountains I never thought an 8 block walk could be such a victory (Pictured are my friends Cavan, Ryan, Karsten and I on top of Mt. Phelps in the Adirondacks). To my biking and skiing friends, you better watch out when I have my hemoglobin back...

Then we came back to my apartment and was confronted with a challenge I never expected. I went to trim my fingernails and realized I lacked the feeling, strength and dexterity in my hands to do so. It's a sobering thought to not be physically capable of trimming your own fingernails.

But, alas, the human spirit is both enduring and innovative, and after much thought I figured out that if I carefully rest the clippers on my leg, insert my fingernail and press the clipper with the palm of my hand that I could do it on my own. It took me the better part of a half hour, but in the end I was able to do it on my own and extremely proud of my small victory.

I know that the coming days are going to get harder as I come off the drug, but I will find comfort and joy in small victories like these.

So my advice for the day... Don't do drugs (unless they're saving your life).

-Sam

On hoping for good karma, and the importance of tomorrow

Well tomorrow will find me in the clinic for another spinal tap and bone marrow biopsy. The results of the biopsy tell if and how well treatment is working and will determine the next course of treatment. I'll update with results when I know them which I expect to take about one week. In the meantime, Here's a quick story that I'm hoping will help bring me good karma...

One pleasant evening late this summer, roughly a month before this whole adventure began, I stopped by my sister Kate's house with my buddy Phil and some delicious Po Boys from New Orlean's Takeout for a pleasant dinner (if you're not familiar with New Orleans Takeout in Madison, become familiar).

While enjoying our delicious cajun, Kate reminded me that my Dad and Sister (pictured) were cycling a century in New England to raise money for the Leukemia and Lymphoma Society in honor of my mother, a lymphoma survivor, and in memory of my grandmother who had multiple myloma (With Leukemia, I now complete the royal flush of blood cancers in my family). Kate further pointed out that the ride was the upcoming weekend, that my sister, Sare, was only $80 shy of raising her goal, and that neither of us had yet sent a donation.

"If you throw in $40 I'll do the same, and we'll be her heros," Kate said.

Feeling this an extremely worthwhile cause and having some money in my annual charitable donations budget I chimed in:

"I'll happily give $100, I'll bring you a check tomorrow for you to send to her."

Kate cocked her head, looked at me oddly and said, "But she only needs $80 to meet her goal."

I laughed and smugly replied "I think the real goal is to cure blood cancer, and I'm afraid $80 just won't do it."

I'm happy to report that I sent $100 to Sare for the Leukemia and Lymphoma Society, and while I doubt this amount alone was enough to find the cure to blood cancers, tonight I'm at least hoping it will bring me some good Karma.

Thanks for all of the love, support and kindness, and for following my Journey.

Sam

Blast # 4 and a Christmas Request for my Readers

Blast # 4 came on Thursday and I feel great. While many of the more cumulative effects of the chemo are setting in - I'm losing feeling in my fingers and toes, falling on a regular basis, and looking like Mr. Clean more by the day as the Prednisone makes my cheeks swell up - I still get a strangely satisfying feeling going in each week and having a nurse pump me full of the good stuff to kill some more lymphoblasts.

As my friend Karsten so aptly branded it in a note this week as I waited in the Chemo room, I follow the "scorched earth philosophy on chemo":

"Oh, you like my house? You like my field? How do you like them on fire???"

As Christmas approaches, and I explain how great I feel, I cannot help but reflect upon how lucky and fortunate I am as I go through this journey. Compared to others, my body has responded remarkably well to the first slate of chemo drugs. I'm still around, kicking, causing trouble at work and elsewhere and having a good time when many others end up in a hospital bed for months.

I'm surrounded by an amazing support structure of friends, family, coworkers, physicians and strangers who take care of me when I need it, and do so with unbelievable grace and kindness. All of your support warms my spirit and I can't tell you how much I appreciate all of the kind words, not to mention you taking time to follow my journey.

On that note, I keep hearing of people reading my blog who a.) aren't yet followers or b.) are uncomfortable commenting. Please become a follower if you're not already and never hesitate to comment about anything, even if you don't know me (just comment on a post if you want or I'd love to answer any questions that any of you have about cancer, A.L.L, or treatment. Equally welcomed are personal stories, stories of a friend, or even ask me about fixing a bike or finding the best brewpub to take a date in Madison if you want...) Bottom line - if you've got something on your mind... share it.

While I am extraordinarily fortunate to have responded so well to treatment thus far, and to have such an amazing support structure, every week when I go in for labs, appointments, tests and chemo, I see and meet amazing people who are not so fortunate.

In rough shape they travel long distances from family and home to get the care that they need. While my doctors are cautiously optimistic that I can be cured through chemo alone, many at the clinic with Leukemia are preparing for bone marrow transplants -- A dangerous, painful, and unfathomably terrifying procedure that takes months if not years to recover from.

In an effort to make the lives of transplant patients more comfortable, compassionate doctors in Madison are raising money to renovate a comfortable home for patients and caregivers recovering from transplants, so that they get the care the need in a comfortable setting and need not spend months in sterile hospitals.

"The Restoring Hope Transplant House" needs renovations to open and provide such comfort to transplant patients and their families.

Nothing will make me happier this Christmas than if we do a small part to make the world more comfortable for the people I see at the clinic every week who are less fortunate than I, and for the people who will go through this 5 or 10 years from today.

This morning I donated $20.13 to the Transplant House (If all goes according to plan I will be completely done with treatment in 2013). If you can afford to, please consider joining me in donating to the Restoring Hope Transplant House, whether its $5, $20.13 or a $100, it would brighten my spirits this holiday season.

You can read about the transplant house at this link:

http://www.restoringhope.org/

and Donate online here:

http://www.restoringhope.org/support/donations.php

(neoludites can find an address to send a check here also)

Then, after you do, shed the midwest modesty, take some credit, and proudly comment "I donated" on this blog post -- philanthropy is one of the few contagious activities my immune system can tolerate.

Finally, if you donate, please consider emailing me to let me know how much you contributed. My email is bikeryder@gmail.com. I won't judge the amount or disclose any of the information, I'd just like to track a grand total.

Together, this holiday season, let's do a small part to make the Restoring Hope Transplant House a reality to bring hope and comfort to those who need it most. I look forward to the day years down the road when I can bike to the house, visit with the patients and give them another story of hope.

Thanks and Happy Holidays,

Sam

The Fresh Snows of Winter and a Story of Hemingway

There are few things as pure, wondrous, or beautiful as the first snows of winter. Yesterday I enjoyed a wonderful walk in the snow, and tonight I'm immensely enjoying the sight of snow falling gently outside my window.

I have to note that I very much enjoy all of the comments you're posting on the blog -- keep them coming. In one particularly flattering comment, my Grandmother compared me to Hemingway after I posted a recent poem.

This reminded me of one of my favorite stories about one of my favorite authors, Mr. Hemingway. A historian once found and photographed an elementary school journal entry written by Ernest Hemingway in the third grade. The teacher's prompt read "what do you want to do when you grow up?" The photograph of Hemingway's response is ingrained in my mind's eye. In grade school handwriting, the young Hemingway simply wrote:

"I want to travel and write."

Like Hemingway, I share an affinity for travel, adventure, the outdoors and the written word. I can only hope to live such a life of adventure and to someday become as artful and commanding of language as he.

While I am flattered by the comparison, there is one final distinction I would like to draw between myself and Hemingway; while he is an idol of mine, Hemingway decided to abruptly end his life with the cunning use of a shotgun. I on the other hand, will fight tooth and nail to hang on to every minute afforded to me in this lifetime so that I can continue to enjoy nights as beautiful as this.

And, in this spirit, I'll leave you with a poem I wrote about the fresh snows of winter.

Sam


The fresh white snows of early winter
fall softly and indiscriminately tonight.

The tender cold flakes awaken my soul,
conjuring memories of snow days, Christmas nights,
and the anticipation of walking in from the cold
to a bowl of Mum’s warm soup steaming on the kitchen table.

As I watch the falling powder,
my mind wanders past childhood and
through snowy evenings not so long ago;
escaping the night’s chill in steamy pubs,
drinking warm pints of stout,
conversing with close friends in good cheer.

After slowly imbibing our sweet malt
we’d pass through the pub doors and into the night air;
the peaceful flurries allow us to share
in an evening’s final embrace.

I sympathize for those in the southern climes
who never experience the life and comfort
found in the warmth of a woman’s cheek
as she slowly says goodnight
standing in the soft glow of a city on a snowy eve.

The fresh, white snows of early winter
fall softly and indiscriminately tonight.
The tender cold flakes warm my spirit and awaken my soul.
And, for that, I am grateful.

Mum's Story -- An Inspiration

As many of you know, my Mother survived Lymphoma and is an inspiration to me. While I could tell the story now, I instead leave you with an excerpt of a paper I wrote in an Integrated Liberal Studies class almost exactly one year ago. It's a bit long, but please read it, it's amazing when one considers the events of the last month:

"Part III: The Application Process and A Life Changing Experience:

My junior year of high school I was very happy albeit a little stressed, taking multiple AP classes a term and preparing my application for the college I had wanted to attend since third grade – UW-Madison. I was enjoying high school and excited for the future. Characteristically for that time in one’s life, I was immersed in thoughts of college and the future. I felt entirely invincible. I could not have imagined how quickly that all would change.

That year, I came home one evening after Nordic ski practice to find my mother (Mum), whom I have always been very close, visibly shaken. She explained that she had seen the doctor that day for symptoms she thought were probably associated with a sinus infection. The doctor had discovered a large lump on the very bottom of her neck and had performed a biopsy on it. One nearly sleepless week later, she was diagnosed with a Non-Hodgkin’s Lymphoma, a terrible form of cancer that attacks the immune system. A CT scan revealed one exceedingly large tumor encircling her aorta, wrapping between vital organs. Devastated, terrified, and realizing just how quickly life can change, I could not have imagined that this terrible disease would be one of the most profoundly positive influences in my life as I prepared to depart for college.

I continued to prepare my application for UW-Madison as my mother endured nine months of intense chemotherapy. The most difficult conversation I have had in my life was when, shortly after she was diagnosed with cancer, Mum and I discussed how excited we were about my departure for college, and the realization hit me that it was entirely possible she may not be with us when I leave for school. The realization that day profoundly changed the way I view everything in life, and has shaped my character more than any other experience in life. I vowed that day to never again take anything for granted: the health of those I love, my own health, or the time we have. Furthermore, Mum’s cancer helped me prioritize what is truly important in life. There are so many things in life that simply are not worth becoming upset over, that I had in the past. Suddenly, becoming upset over receiving a less then optimal grade on an exam or having a bad day at work seemed comical in comparison to the more serious events in my life.

Mum embodied the Carpe Diem attitude I was developing while she underwent chemotherapy. Experiencing chemotherapy is a terrible thing. One’s body is pumped directly full of chemicals to kill the cancer, and these chemicals wreak havoc on your entire system. It makes one fatigued and nauseas, it makes all your hair fall out. Although she endured all of these effects, I never once heard her complain. Although she had everything in the world to be unhappy about, Mum was the happiest I had ever seen her while undergoing chemo. Mum’s positive attitude through this terrible experience reaffirmed my newly developed perspective on life that happiness is a state of mind rather than a physical state; that we should never take anything for granted, and that we should never let inconsequential events diminish our happiness.

It seems strange to say that my mother’s cancer was a blessing, but a truer statement has never been penned. Less than one year after being diagnosed with cancer, less than one year before I would leave for college, Mum received a clean bill of health – the chemotherapy had worked. Today, my mother is the happiest person I know. She considers her cancer a blessing because it taught her to value every moment. She exhibits an unparalleled ability to find good in any situation, and I consider her one of my greatest role models.

Mum’s cancer made her, myself, and my family reevaluated what we prioritized in life. Never again, would I let society determine the things that are important without giving it a second thought. Through a difficult process I had come to the realization that it is people and perspective, not grades, money or success, that are truly important. From that day forward, I would ensure that I did my best to enjoy every day, because I realized that the next is never ensured. It was with this new framework that I would leave for my undergraduate education at UW-Madison. Meiklejohn desired his students view the world through a lens and develop a frame of reference. The experience of my mother’s cancer would provide my dominant frame of reference as I completed my education at UW-Madison."

Thanks Mum,

Sam

Blast #3 and a New Mantra

I was blasted for the third time this morning and while I'm a bit beat up, I'm in good spirits and excited because all early indications suggest that the Leukemia is in far worse shape than I. While doctors estimate Leukemia cells comprised 50-60 percent of my bone marrow before I started treatment, the preliminary results of a bone marrow biopsy performed on day 7 of treatment (one blast in) suggest I had just 2% Leukemia cells left in my marrow at that time.

This news makes being beat up from treatment extremely tolerable. I know I can handle the discomfort of the treatment, and, with the knowledge that the Leukemia cells are dying, I can't help but look forward to going in each week to make them suffer. I have a new, simple mantra for chemo -- "Bring it On."

I have to throw the disclaimer that there are no guarantees in treatment, and all of this news should be viewed through a lens of cautious optimism. That being said, I continue to hold faith that this adventure will all go down in the books, as I have told many of you, "as another adventure in the long life of Sam Weis"

On the artful side of life, the cocktail of drugs they have me on diminishes my ability to concentrate, making simple tasks like following a TV program or reading a novel difficult. My newly concentrated A.D.D. has renewed my interest in poetry, and my time in waiting rooms is providing me with some time to write in short poetic prose, which I very much enjoy. So I'll occasionally share with you some poetry that I'm writing. Below you'll find one I wrote shortly after starting treatment. I hope you enjoy.

Till next time,

Sam


I want to die an old man
sitting in a chair by the sea
with the sweet smell of salt in my nose,
a belly full of warm gumbo and cold beer,
and a fishing rod at my side.

The ladies of the island will mourn
the loss of the leathered old man
they so often passed on the beach
with his sly suggestive smile
and a quiet nod.

If I should die a crusty old man
sitting in my chair by the sea
with sand in my hair
and skin darkened by the sun,
then it will be with a serene, satisfied smile.

On Miscues, Adversity, Fishing and Life

I have always believed that we are merely a sum of our experiences. We are an aggregate of the people we meet, the places we travel, the food we taste, etc. I profoundly believe that of all of these experiences, adversity and miscues shape us as individuals and paradoxically provide the most richly rewarding experiences in life.

I am reminded of a recent trip to Florida when I ambitiously awoke at 5:30am to head out on a solo fly fishing trip (A true feat for a non-morning person). I didn't know at the time that the sun would not rise until 7:30, but did know that we were under a dense fog advisory. When I reached the boat, visibility was only few hundred yards, but I felt confident that I could still navigate between the islands. Throwing my caution to the wind I headed out, confident I could find my way south to my favorite fishing hole.

After two hours of navigating what should have been a twenty minute trip in the dark and the fog, I slowly came to the realization that I was above my head. I could see no islands, no intercoastal waterway markers, no boats, no sign of safety -- just water and a thick blanket of fog that enveloped me.

Stuck alone on the boat, the claustrophobic panic that often comes with getting lost began to set in. Suddenly and unexpectedly, however, I was overwhelmed by a sense of calm. I stopped the boat, took a deep breath, tied on a clauser minnow (tied by my good friend Erik - thanks buddy), and began the rhythmic and soothing action of fly fishing.

For hours, lost in the fog, I enjoyed catching fish, the quiet solitude, and the sweet, heavy salt air. Succumbing to being lost forced me to live in the moment, and rarely have I experienced such enjoyment.

After a couple of hours, the sun burned off the fog, and revealed that I was within a hundred yards of the safety of the Boca Grande Bridge, the very spot I had intended to end up.

Tonight, I feel as though I am once again lost in the fog, but am again overwhelmed by a sense of calm. The fog is precisely where I am suppose to be, and I will enjoy the present and continue to trust that the safety of a bridge lies just outside of sight. And, I will say with confidence that, like my solo fishing trip gone array, my cancer will provide an unexpectedly rewarding experience that I will carry with me throughout life.

Feeling well and looking forward to killing some more lymphoblasts on Thursday,

Sam