Blast #5 and a Growing Hope

Well, something I had hoped I would never need to say: Blast #5 of induction today. But, I'm feeling great, and in good spirits. It feels darn good to get back on the horse and kill some more lymphoblasts.

All right, here's the update. While it was hard to hear that there were still 1 percent leukemia cells in my marrow and that under a best case scenario I'll be continuing through the protocol as a "Slow Early Responder," it may not be as bad I had initially suspected.

On Tuesday, the day I got the bad news, I saw a pediatric oncologist who made it clear that while having a high minimal residual disease (MRD) is an "adverse prognostic factor" that the cure rate for patients on protocol didn't vary tremendously between MRD positive patients and MRD negative patients because MRD positive patients receive more treatment (there's about a 15 percent difference according to him.)

Today I saw an oncologist who specializes in adult A.L.L. and found this appointment even more encouraging. She was unable to help me out much with my prognosis because they rarely test for MRD in adults. Were I on an adult protocol, they'd probably just tell me I were in remission, I'd be happy and we'd move on to the next step. Treating leukemia is one of the few places where I cannot embrace Thomas Gray's "Where ignorance is bliss, 'tis folly to be wise" philosophy. I'm glad we know, and I'm glad we're doing something about it.

From the fact that they often don't test adults for MRD, I've concluded two things. One: Doctors care and do everything they can to take care of and cure kids (as they darn well should.) Two: A childhood protocol is the right place for me to be.

Point number two was reaffirmed when the Adult oncologist explained to me that she just finished a paper that shows definitively that in patients between 15 and 30 with adult A.L.L. the patients who tolerate the most intense chemotherapy have a higher cure rate than those who do not (childhood protocols are much more intense than adult because they don't put up with whining in kids)

There is no question one would rather not be MRD positive, as this increases the risk of relapse. But, this new information coupled with the facts that I'm right on the line; will most likely go through one of the most intense chemo regimens around; and will now likely do cranial radiation, is in many ways reassuring (slow early responder route is around 3 months more chemo plus cranial radiation and I was randomized onto a "high dose" experimental wing of the trial I'm on -- as I wanted to be). I never thought I'd hope for 9 months of intense chemotherapy, but I now do as in many ways its probably the best chance at a cure.

I have yet to talk to my oncologist about what all this means (he's on vacation) and will be curious to see what he has to say as well.

But for now, all I know is its two more weeks of induction, then another bone marrow biopsy to see if i've made it under the 1 percent line to stay on protocol. I'm quickly learning to take this one stage at a time.

I'm back on the prednisone, so check back often for new blog posts. They'll probably be coming often, and I think some of them should be fun.

Medically/Sexually squeamish beware as the next paragraph may be too much information...

Coming off the predisone I've felt tenderness all over my body. This is especially true in my saliva glands and in my testicular region. While on a scale to one to ten this is perhaps only a two in terms of pain I'd put the disconcerting factor at a nine (all men know what I'm talking about). This is especially true because the testicles are one of the few places Leukemia can metastasize (spread). So, after talking with the doctor, she's not that concerned but to be safe and monitor it, Monday afternoon will find me at a GHC clinic for a "testicular ultrasound." Never in my life did I imagine that someone would grease the old boys up and take a look at them with an ultrasound machine -- Life sure is interesting. I apologize if this is too much information -- I've promised to be open and I warned you. Feel free to joke about this on comments, it seems ripe for it.

Finally, I learned something interesting today. The chemo drugs I'm on now only stay in my system for a couple of hours to mess up the DNA of cancer cells. With this in mind, I did my best and feel like I succeeded in having nearly entirely positive thoughts during this short window of time today.

I'm convinced that while not the end all be all, that the mind and body are intimately tied and being positive increases your chances of getting through something like this -- It's strange to watch myself get progressively stranger in this, but it's all part of the journey. If you had told me a month ago that I would meditate while getting chemo I would have laughed out loud. Now I not only do it, I tell y'all about it.

Anyway, I digress. Knowing the chemo drugs only stay in my system for a couple of hours, I'll countdown to my next chemo appointment on this blog starting two or three days beforehand, so you can all mark your calenders and take a minute to send me good vibes. I'll take all the help I can get.

Feeling great and enjoying life,

Sam

The Swells Just Got Bigger...

This one will be hard...

I got a call with bad news this morning...

My doctor jumped the gun. The final pathology report shows that I still have 1% Leukemia blasts in my marrow. On my protocol 1% and above is considered minimal residual disease (MRD) Positive, .9% and below is considered MRD negative. Because I'm MRD positive, it puts me in a less optimistic prognostic category and lengthens my treatment schedule. I won't get to move on to the next stage of treatment yet, but continue on induction for two more weeks to try to reduce MRD. At that point we'll do another bone marrow biopsy and if it shows less than 1% leukemia at that time I'll move onto the next stage of treatment as a slow early responder.

I saw a pediatric oncologist this afternoon who truthfully beat around the bush about what this means prognostically, but made me feel a little better.

I'm still sorting through this and will update later.

Remission!

Talked to the doctor this evening and he informs me that the results from the recent bone marrow biopsy reveal that I have "remission marrow." In short they can no longer detect with a microscope any cancer in my bone marrow.

Now, I'm tempted to overuse the exclamation point because I'm ecstatic about this news, but I must warn that they now get almost everyone with A.L.L. into remission and the trick in Leukemia treatment is making sure it doesn't come back (relapse).

The real miracle is that doctors have figured out that even though they can't find the Leukemia, it still lingers, and have found that by intensifying treatment with a whole new cocktail of toxic drugs that they can often prevent a relapse. So, I still have a long, hard road of treatment ahead, and there are no guarantees.

Now that I've gotten through that necessary caveat, back to the good news.

Doctors believe that the faster one goes into remission the better the chance they have of being cured of A.L.L., and all indications are I went into remission as fast as I used to climb hills on my bike compared to my cycling buddies -- that's fast. Eight days after starting treatment, a bone marrow biopsy revealed I had next to no Leukemia left in my body. According to the New York Times, which is the definitive authority on all matters in my opinion, "responding well to early treatment is a good sign regardless of risk category" when it comes to A.L.L.

Also, I'm on a clinical trial that varies treatment depending upon how well and quickly you respond to treatment. My doctor is now quite confident that I fall into a category that is known as a "rapid early responder" as opposed to a "slow early responder." The intense chemo treatment for rapid early responders is roughly ninety days shorter than that for slow early responders.

Furthermore, rapid early responders usually don't require cranial radiation, treatment that can have some rather nasty side effects and I would certainly like to avoid if possible.

So, If all goes well -- meaning I don't have a relapse and the doctors don't off me with treatment (which I trust that they won't) -- by my math I should be coming off of the most intense chemo in mid-June, just in time to watch Lance Armstrong ride the Tour again.

On that note, I'm also very excited tonight because I now have my bike set up on a trainer in my apartment, and can happily report that I now have discovered two things make me feel invincible -- being on Prednisone or being on my bike. Today I spent a half hour on my bike and could shut my eyes and envision I was riding my bike down Wilson street in the Sun to work at Clean Wisconsin. It felt great, but I held myself back because I wasn't sure how much energy I should expend on exercise while getting blasted with chemo. Tonight while talking with my doctor, I had a funny conversation that went a little something like this:

"I'm concerned about the fact that I've doubled my caloric intake in the last month, realized last night that I've lost about half the muscle mass in my legs, and I'm just maintaining my weight. I've set up my bike in my apartment, and it feels great to ride, but should I be burning the calories exercising?"

"Of course."

"How long and intense should I exercise."

"Ideally I'd like to see you on your normal exercise routine, as you were before treatment... I suppose I should ask, how much did you exercise before treatment?"

"Well, I biked about 150 miles a week and enjoyed climbing mountains when on vacation."

"Oh... Well, I'd like to see you on your bike for 45 minutes to an hour every day you can."

It's a strange feeling when you can't live your "normal" routine in the treatment of a disease because your lifestyle was too healthy before treatment. Suddenly, doctors are telling me NOT to eat fresh fruits and vegetables or natural foods, to eat MORE mayonnaise, butter, whole milk, ice cream, milk shakes, meat, cheese, eggs, Peanut butter and processed food, and to exercise LESS. Only I would struggle with such suggestions.

So, to wrap this all up, the treatment for A.L.L. is one of the most intense chemo protocols around and I have a long road ahead. On Friday I'm back in to start the next, more intense, stage of treatment that to quote my protocol is designed to "deliver a 'knock out punch' to any remaining leukemia cells."

But, for the time being, I'm feeling great and planning on spending a few days enjoying Christmas with my family, feeling invincible on my bike, and being in remission.

To my friends out there tonight, enjoy a drink for me!

-Sam

On the Unknown and a Wild Ride From Isle Royale

Normally, I'll try not to post this much (I'm probably leaving many of you behind), but I want to let everyone know that I'm feeling much, much better today.

The steroid withdrawal may not be as bad as I had anticipated, and I'm extremely excited about that. Rather, I think the combination of being blasted 4 times in a month, then having a spinal tap, a bone marrow biopsy, and coming off the prednisone all in one day hit me rather hard (as one should probably expect.)

A good friend whose gone through chemo had warned me that the prednisone makes you feel invincible, and the stuff really does. It's a bit of a cruel reality to come off the drug after I've been beat up by treatment, as I wait for test results to see how well treatment is going, and anticipate the next (more intense) stage of treatment.

If I'm completely honest, it broke my spirit and for the first time I had to deal with the fear that going through this brings. Most concerning, I began to distrust my doctor and his optimism, something I know I cannot allow myself to do.

Dealing with this fear made me recollect a recent journey that parallels my leukemic adventure extremely well (this one's for you, Vitse -- the guy loves metaphors).

After graduating this May, I took a 5 day backpacking trip with my friend, Schmidty, to Isle Royale National Park, a 45-mile-long island of remote wilderness in the Northern quadrant of Lake Superior that can only be reached by seaplane or boat. To reach the island, Schmidty and I booked tickets on the Isle Royale Queen Ferry IV, a 100 foot steel vessel that makes the 57 mile journey from Copper Harbor at the tip of the Keweenaw Peninsula in Upper Michigan to Isle Royal every Monday and Friday in May.

After a great 4 days of hiking, I awoke on Friday morning to Schmidty being lectured by a friendly park ranger who would have preferred Schmidty chose to urinate farther than 2 feet away from our lean-to. Finding great humor in this, I rolled out of my sleeping bag to ensure I had a visual as well as audible memory of this moment.

After he had thoroughly outlined the reasons to step away from lean-to or trail to relieve oneself to Schmidty, I began chatting with the ranger. It was overcast, misting, and you could hear the wind whistling through the pines above.

"When are you two heading out?"

"We're on the ferry to Copper Harbor this afternoon. Is this weather going to hold?"

"Supposed to pick up all day, they're calling for 40-50 mile an hour winds from the north, you'll have a rough ride home, big followers."

"Followers?"

"Waves that follow the boat. The good news is it's a little less rough than when their coming at you. The bad news is they look menacing because they follow the boat."

The weather did indeed pick up as we made the four mile hike back to Rock Harbor where the ferry was to pick us up. By the time we reached the ranger station we were cold and being pelted by a wind-driven rain. The flag pole rattled loudly in the strong winds at the station, and the howling of the wind through the pines only increased.

Waiting for the ferry, Schmidty and I sheltered with others in the small visitor center at the ranger station. As we sat trying to warm ourselves, I overheard on a ranger's radio the captain of the Wenonah, a slightly smaller boat than the one we would be traveling back on that departs from the much closer Grand Portage, Minnesota.

"These swells are just too big. I'm afraid its not safe to proceed. I'm turning back and we'll see you tomorrow."

The Wenonah only makes a twenty mile trip from the North end of Lake Superior, which would be calmer than the central and south end of the Lake where we were about to travel. If they had to turn back because of swells, I knew we were in for a ride. Growing ever more nervous, I walked outside and then to the general store to buy some dramamine. On the way back to the visitor center, I noticed a marine forecast pinned to the wall.

"Storm Warning. Gale force winds expected over entire Lake Superior region. Strong storm expected to move over Central Lake Superior with conditions deteriorating in early afternoon. Sustained winds 30-40 MPH with Gusts reaching 55 MPH. Swells 6-9 feet."

I went back into the visitor center and nervously perused their book collection to try to take my mind off what I knew would be quite an ordeal to follow. My plan backfired when I stumbled upon "The Deadliest Passenger Ferry Disasters of Lake Superior." This upbeat book included a handy chart that listed by greatest death toll all of the passenger ferry disasters of Lake Superior and included a very busy map with illustrations of the ferrys where they had gone down. I couldn't help but notice that there were many ferrys directly in line with where we were about to travel, many of them having sunk within the last decade.

About this time, the boat arrived, and ghost white passengers deshipped. Many looked physically ill and in talking with them I soon learned that many were physically ill. It was rough coming across and I knew it was only to get rougher.

I wouldn't have admitted it then, but to say I was apprehensive about making the journey home across the Big Lake would be a huge understatement. I was scared shitless. I did not want to get on that boat. But, alas, I really had no choice. The boat only came on Mondays and Fridays, it was the only ticket off the island back home and I didn't have the rations to make it until Monday. I would have to suck it up, get on the boat and trust that the captain would get me back to Copper Harbor safely.

I boarded the vessel in fear of the journey that lie ahead. I sat with Schmidty in the back right corner of the boat, in a booth, knowing that the stern of the boat always gets tossed about less than the bow and that it would decrease the chances of getting motion sick -- It pays to spend some time on a boat.

After loading the cargo and getting everyone settled, the captain came back to have a word with the 30 or 40 of us on the boat (a number that I now knew would make for a rather insignificant passenger ferry disaster in relation to others on Lake Superior thanks to my light reading at the ranger station).

"There's a storm brewing over the lake and it was a pretty rough ride over. It's only suppose to get worse this afternoon and we might be in for quite a ride. The wind is out of the North and the waves will grow as we get farther south, closer to Copper Harbor. They're followers, so they'll look dark and nasty, but we won't get tossed around as much as if we were heading into it. You guys are going to get to see some waves bigger than most people ever get to see in they're lives so lets sit back, have some fun and enjoy the ride."

Having concluded his attempt to alter our perspective on the situation -- a sign things were going to be even rougher than I thought -- He fired up the twin diesel engines and we began heading out of the safety of the harbor and toward the treacherous open sea.

As we passed the breakwater of Rock Harbor, the captain came over the loudspeaker:

"Like I said earlier I think things will stay pretty calm for an hour or so here before we... Holy, check out the wave on the starboard side of the boat... that's a good six footer or so... Allright, let's have some fun."

Sitting in the back of the boat I looked up at a wave I was quite confident could flip the boat. As the wave reached the back corner where I sat, I felt the captain deftly steer into it and the boat trudged up the wave then back down the other side. The boat was being tossed back and forth violently and I knew it was only going to get worse.

Focusing on not getting ill and trying to take my mind off of the thought that an author of "The Deadliest Passenger Ferry Disasters of Lake Superior," might happily be able to update his book at my expense, I layed back in the booth and tried to go to sleep. Miraculously, I was successful in my attempt.

I awoke when a wave jarred the boat so hard that it almost threw me from the booth. I instinctively grabbed ahold the shiny chrome post that affixed the table of the booth to the floor of the vessel. As my eyes opened and began to focus it was to a booth across the boat where a woman was vomiting into a clear ziplock bag.

As I sat up, the boat rocking and rolling, I was surprised that my friend Schmidty was nowhere to be seen. I looked over and saw a small trail of vomit leading to the open stern of the boat, and Schmidty sitting outside. He too had vomited in a ziplock bag, only his had a small hole in its corner.

Fresh air often helps with motion sickness, and Schmidty would spend the next three hours on the open stern of the boat, in 35 degree weather, gale force winds, and spray from waves in order to keep his stomach at bay.

At this point, the storm was in full force. From my corner of the boat I would look up at the waves as the approached and see nothing but a wall of water coming at me. As we zig-zagged across the Lake, the waves grew, and with them my confidence that we were all destined to end up on the bottom of Lake Superior -- the Lake known for never giving up her dead.

Trying to escape this thought, I laid back down and began reading Hemingway's "The Sun Also Rises." While the book occupied the foreground, I couldn't help but notice that in the background I would see a gigantic wall of water for a number of seconds, brace myself as it hit with my non-reading arm, then see nothing but sky for a number of seconds as the boat was tossed to the side.

Getting a touch motion sick from reading I sat up to eat a granola bar (eating often helps me with motion sickness, oddly enough.) A gentleman sitting in a booth two rows up from me stood up and began heading for the stern door. He took three steps, turned ghost white, braced himself on a pole next to my booth, looked at me and said cursorily "Is is all right if I sit down."

"Of course," I replied, trying to hide my fear that I was about to be vomited upon.

He was a software engineer from Green Bay, ghost white, close to losing his lunch, and clearly had the fear of God in him. He needed a distraction, and I could use one as well to get my mind off of the fear the waves were bringing. I struck up a conversation:

"Spend much time on a boat?"

"Once on the Mississippi"

"Sitting towards the back helps with the motion sickness"

"I saw you reading earlier and eating a granola bar, I don't know how you can possibly do that."

"I'm feeling a little queasy, not too bad, did you take dramamine?"

"Two of 'em."

That was about all he could say. He then got very quiet, focusing all of his energy on not getting sick. I had done my best to help him out and like to think it did something to distract him.

The waves were big and menacing that day, but in the end we made it in safety to Copper Harbor and were greeted by the friendly staff at the Harbor House in traditional Bavarian attire welcoming us back with a dance on the patio outside the restaurant. The calm water of the harbor was one of the most beautiful things I had ever seen.

So, why do I tell you this absurdly long story? One, because I think its a damn good story, and I like storytelling. Two, because I realized that this adventure parallels the one I'm on right now.

You see, Leukemia is like an island and the only ticket home is boat ride through a storm. I might be terrified at times, but like that day in May, I need to get on that boat and trust that the captain (my doctor) will get me to harbor safely. I'm just getting past the breakwater now and know that this is going to get a hell of a lot worse before it gets better.

Along the journey, I'll continue to meet people who are far more sick or terrified than I, and I'll do my best to help them get through as well.

So, in short, I'm getting see some waves bigger than most people ever get to see in they're lives so its time to sit back, have some fun and enjoy the ride.

-Sam

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

A Belated Thanksgiving Post

"He is a wise man who does not grieve the for the things he has not, but rejoices for those which he has." -Epictetus (Greek Philosopher).

Well, yesterday was Thanksgiving, and upon reflection I am overwhelmed this year by all that I have to be thankful for.

In 1964, someone diagnosed with my A.L.L. had less than a 3 percent chance of surviving five years. Today, thanks to the endless work of scientists and medical professionals, 70-80% of people diagnosed with the disease are cured of it. Today I am thankful for the years of work that gives me hope I will die a crusty old man.

Today I am most thankful for the amazing support structure that surrounds me. While doctors have dramatically increased the cure rate for A.L.L., the treatment protocol is long and rough (3 1/2 years). My family, friends, coworkers, and even strangers have come to help me through this hard time without complaint. Words cannot describe my appreciation to those who reach out a hand of support or send me well wishes.

I feed off of the support of others; it puts a wind at my back. I rarely like to ask others for favors, but, alas, I'm getting better at it and will occasionally on this blog. So, today's request: If you're reading this blog, become a follower (click on the upper right hand "follow this blog" link). Also, if you're already following, please post a photo of yourself on the profile. Seeing your smiling faces looking back at me when I log in always brightens my day. If you do, I'll be forever thankful.

A quick health update: blast #2 came on Wednesday and I'm starting to feel it a bit more. Writing and reading are getting a bit more challenging and they will get harder over the next few weeks as my blood counts drop (that's why the Thanksgiving posting is coming a day late...) While I'm finding the chemo is physically debilitating, I'm optimistic and in good spirits. I will beat this.

Hope you all had a terrific Thanksgiving and enjoy the long weekend,

Sam

Sam's philosophy on the duality of good and bad

I must warn the reader that I will go back and forth between heavy and light on this blog. I enjoy humor and will return to it as much as possible, but it will also be heavy at times and I hope it will be insightful. This will probably be a heavier posting, but I'll reward the reader with "masturbating into a cup... explained" and a terrific "hair contest" within the week to lighten the mood.

Alright... Sam's philosophy on happiness and why bad things happen to good people...

I don't believe, as many do, that everything happens for a reason. I also don't believe that "bad things" or "good things" happen. Rather, events happen and there is always both good and bad in them. The key to a happy life is to search for the good in everything.

Having Leukemia has drastically altered my perspective on life. The last week has been difficult, painful, and uncomfortable a great deal of the time, but it is very rewarding in it's own way. Today, after enduring extreme fatigue, chest discomfort, and a nasty spinal headache, I finally summoned the energy to bundle up and go for a walk around my neighborhood. Never before has a simple walk been so enjoyable or so beautiful.

I enjoyed the sound of snow crunching under my feet and the cool air against my cheeks. I enjoyed and relived memories as I passed some of my favorite hang outs (Mickey's Tavern anyone???). I took the time to look around and take in my surroundings instead of focusing on my destination and what lay ahead -- it's a truly wonderful thing to live in and enjoy the present.

Lately when I see strangers my age who are healthy, my thought is not the "why me?" that I would have expected, rather it is a thought of "they don't understand how beautiful life really is." Paradoxically, cancer offers a lens to look through that reveals life's magnificence and beauty.

As I say, there is good and bad in every event -- In fact, we would be incapable of understanding good if it were not contrasted by bad and vice-versa. The coming years will be the hardest of my life - incomprehensibly hard - but I cannot imagine the overwhelming joy and euphoria that finally beating this cancer will bring.

Well, tomorrow I'm in for another blasting. I'm scheduled for another bone marrow biopsy, spinal tap, and round of chemo. It will not be pleasant for me, but my hope is that it will be even less pleasant for the cancer cells (and by less pleasant I mean lethal).

I will try to embrace the line from Red Foreman in That 70s Show, "I like pain, I learn from pain."

Till next time, and thanks for all the support,

Sam

On Chemo and Superhero Children

Chemo is a strange experience. A nurse wearing protective clothing removes syringes that have labels reading "Danger Extremely Toxic" and things of that nature, then you watch in disbelief as they pump the chemicals directly into your bloodstream.

It seems counter intuitive that we treat cancer with many of the chemicals that do, in fact, cause cancer.

My doctor informs me that as a result of chemo, all of my bodily fluids are toxic, and I thus must be careful not to impregnate my girlfriend as my toxic sperm could have "indirect effects on the child." I enjoy the ambiguity of such a statement and like to think that this greatly increases my probability of having a superhero for a child.

I have yet to come up with a name or best powers for my fictional superhero child... Any suggestions?

The Great Escape

Round one of blasting complete, and I'm feeling far better than expected. I just hope the cancer cells are feeling the wrath of the chemo and my mental will to kill them.

After just two nights in the hospital, they let me go home last night as I seem to be responding well to chemo. I'm finding that there is an hour or two in the morning when I experience a lingering spinal headache and feel extraordinary nauseated. Thereafter, I seem to feel great and am very excited about it.

I received some more terrific news yesterday; the spinal tap performed on Wednesday revealed that I don't currently have any lymphoblasts (the cancer cells) in my central nervous system. This can occasionally happen and is usually bad news bears...

I'm very excited to be back at home, and hope to avoid infection and the hospital for as long as possible.

Uncle Jimmy's Hangin' Balls

Well, a bit of humor just brightened my day. While emailing my good friend Julie, I wrote the phrase "kick this cancer in the balls." As many of you know, Gmail now scans email content and tailors side banner text advertisements accordingly. My Gmail advertisements now read, and I promise I'm not making this up:

Silk Kissing Balls - balsacircles.com - find the perfect kissing ball, variety of sizes, flowers and colors.

Schwetty Balls Home

Hand Blown Glass Balls - Friendship balls, Gazing balls, and Witch Balls

and my favorite:

Uncle Jimmy's Hangin' Balls - horses love these fun treats: Great tasting in four yummy flavors!

Well, now I know what I'm getting all my friends and family for Christmas.

I'm still waiting on the Chemo. I hear I should be blasted within the hour and will update when I'm able. My friendly nurse says the prednisone might "make you a bit PMSey." "You'll know what it's like to be a hormonal woman" she informs me. Well, we all have that to look forward to.

Peace,

Sam

A Good First Day

I have a lot to comment on over the past two weeks, but first i must let everyone know how i'm doing (I'll probably be playing catch up for a couple of weeks...). Today I began treatment and it was a full day, but overall not nearly as difficult as i anticipated.

The day began by checking into UW Hospital and finding my hospital room. I then had a central line placed, an catheter-like IV that begins on my bicep, runs up a vein to just outside my heart. This will allow the doctors and nurses to administer Chemo and take blood samples without continually poking me or damaging a vein. While I expected this procedure to be painful, it was far from it -- really, I hardly felt a thing.

I then had an echocardiogram test and am happy to report that my heart seems to be working as it's supposed to.

From here, my day got a bit more interesting as the doctors sedated me to perform a bone marrow biopsy, a rather painful procedure where a needle is placed through your hipbone (from your back) to suck out some bone marrow. I cannot remember the procedure, but can vaguely recall calling some friends as the sedation wore off. These were undoubtedly some of the funniest calls people have ever recieved. At one point while trying to call my friend Jesse, I forgot what I was doing. Our conversation started something like this:

Jesse: Hello
Sam: Who the hell is this?
Jesse: What? Who is this?...

You can imagine the confusion for a few minutes (I know this only because I called Jesse back this evening to find out what I had said...

Finally, this evening I recieved a lumbar puncture (known alliases include "spinal tap" or "LP"). This was a suprisingly easy procedure where they took a bit of my spinal fluid out and replaced it with some chemo. All went well, only I seem to have a bit of a headache now, likely resulting from a lack of spinal fluid.

All in all a pretty full day, however I feel suprisingly well. Tomorrow I'm slated to get blasted with chemo, and i look forward to killing some cancer cells.

Thanks for all of the calls, emails, and letters. Your support is really helping me through this. I apologize that I havn't responded to all of them, but its a challenge keeping up.

Till next time and take care,

Sam

A Statement of Intent

As many of you already know, two weeks ago I was diagnosed with a form of leukemia known as Acute Lymphoblastic Leukemia or A.L.L. As a twenty two year old and a recent graduate of college just beginning my adult life, the diagnosis came as a serious shock. My life has changed significantly in an extremely short period of time (mostly in a good way strangely enough), and I think it's important that I document this journey. My favorite weapon is the written word, and this blog is intended to be a place for me to gather my thoughts, let those following me know how i'm doing, and i hope that someday it can be a resource for others battling my disease.

I must warn the reader that this blog will be about life, and life often deserves an NC17 rating. I intend to be open and vivid about everything that I am going through good and bad. Humor, insight, and wisdom can often be found in the most unlikely of places, and I will hunt them with unwaivering persistence. Please don't get squeamish or offended when I discuss procedures or masturbating into a cup (i've got your attention now, don't i?), its all part of the experience.

As a final note, I will not allow cancer to define me as an individual. This journal will document my life in treatment and outside. It will include my favorite stories of the past and my greatest hopes for the future.

I hope you'll follow me on this journey. What is in store I cannot begin to predict. The only certainty is that it shall be interesting.