Gun shy with Good News, Thanks for the Good Vibes, and a Request for More

I must once again apologize for the posting blackout -- I've been playing the waiting game and having fun with steroid withdrawal round 2 this week.

The second round of steroid withdrawal was very different. I experienced one night of rather intense bone pain in my legs, which was rough, but what stands out as far worse were crazy dreams resulting from a lack of the drug in my system. It completely messed up my conception of time to the point where one night felt like a week, and I experienced crazy dreams in what I can only describe as a semi-conscious state. I've never done drugs, but I imagine that it was very much like what a bad trip is like -- If it is, then stay away from those mushrooms and LSD.

Luckily, that all seems to be moderating now, and I've gotten back to feeling rather like myself (just much slower at moving around), which is great. I'm exercising everyday and that really keeps me going.

All right, after the last testing fiasco, I'm getting really gun shy about spreading or believing good news, so I'll tell you everything I know in narrative form.

I received a phone call yesterday morning from the research director of my protocol at the clinic who said that my MRD was below 1 percent and I will be moving on with my chemo protocol. I'm almost afraid to believe it until I see it in writing and talk to the doctor tomorrow.

I want to thank all of you for sending the good vibes. Last week I sat in the chemo chair meditating thinking of all of you and focusing on sending all my energy and yours toward healing.

Tomorrow, I'll begin the next stage of treatment known as consolidation. My understanding is that it is the most intense stage of treatment and of massive importance as it is designed to deliver the "knock out punch" to the leukemia.

Beginning at 11:00 and lasting through mid-afternoon, I'm scheduled to have another spinal tap and two two new chemo drugs. Any positive thoughts/vibes/healing dances you could send my way/do on my behalf would be very much appreciated.

All right, back to the climb.

Excelsior!

-Sam

Calling on Good Vibes and "I'm too sexy for my hair"

Sorry it's been a while since an update... Not a whole lot to update to tell you the truth.

I thought I'd take this opportunity to introduce bald Sam to all (pictured are Katie and I goofing around).

I've been feeling good, and my exercise routine has increased to 30-45 minutes of intense (meaning I sweat) exercise followed by 30-45 minutes of stretching and moving and light exercise per day. Nothing, and I mean nothing, makes me feel better.

Exercise makes my body and mind feel as though nothing can stop me.

All right, to business. Friday morning/early-afternoonish will have me in the clinic for another bone marrow biopsy that will determine whether I stay on protocol or have to look at other treatment options. Any and all good vibes, positive thoughts, or positive ritual healing dances you're willing to do/send my way would be much appreciated (let's avoid sacrificial rituals though, please).

A buddy I met through a blog, Stuart, is going through treatment for Lymphoma and has been having some trouble with treatment... He is one of the strongest people I've ever encountered, however, and remains upbeat and positive -- a true inspiration. Please save some good vibes to send his way as well. You can follow his journey at:

http://stuartsmartt.blogspot.com/

On one final note, I want to let you all know how much I appreciate all of the comments and emails. It seems these days that getting up, taking meds, eating, resting, exercising, stretching, eating, resting, showering, cooking, eating, resting, trying to check in at work and get somthing done, resting, trying to clean but making a bigger mess, eating, taking meds, eating, and then finishing the night with some light reading or a movie soaks up almost all of my day. As a result, I'm getting pretty bad at responding to phone calls, emails, and comments, but each and every one warms my heart, makes me belly laugh out loud, or both. I love you all and appreciate you all sticking with me and helping me through this, even when I don't do such a good job reaching back to you.

And, I'm introducing a new feature to the blog: The comment question of the post. You don't need to stick to the question, if you have a comment on the regular posting, continue posting it, but if you're looking for a prompt I'll start providing some -- I don't get to see all of you very often, miss all of you, and appreciate all of your humor so here we go:

Today's comment question of the post: How can I naturally cure myself of cancer?

I'm expecting some creativity here...

'Till next time,

Sam

On Questions I Have

Everyone going through such a journey is inundated with questions. Being an exceptionally curious fellow, I seem to have a never ending supply of them. I thought today I might share a couple of the more profound questions I have with you today.

1. My doctors tell me I must avoid dogs because they carry too many germs, yet I've always heard that a dogs mouth is cleaner than a humans. If this is the case, isn't it safer to kiss my dog than my girlfriend?

2. This one's a common one that I've actually dwelled on little except to have some fun: What gave me cancer? Here are my top four theories:

i. The Cuban cigar I smoked on a festive college night, inhaling the whole thing before a friend looked at me and said "you're not inhaling that are you?" That was a long, pale, nauseated night.

ii. Resting my ipod and FM transmitter on my upper right leg when driving to get better reception (this wouldn't have entered my mind had I not joked every time "this will probably give me cancer," then awoke one night four months ago with a terrible pain in my right femur and a premonition of the treatment to come.

iii. Impure thoughts in church as a child.

iv. My affinity as a child for removing the foil from the tops of individually packaged jello cups, nuking them in the microwave to liquify the contents, then swiftly drinking the sweet nectar of melted corn syrup -- and probably molten plastic.

Yup. I'm thinking it's the jello.

Any other ideas?

All right, enough tomfoolery, tomorrow will find me in the clinic for the final blasting of induction. I would really appreciate it if anyone reading would make a mental note or set there calanders to send me good vibes as the chemo drugs do there best to wreak havic on the lymphoblasts. So that's tomorrow, Friday, from 10:30am to Noon.

Here's to a Happy and Healthy New Year For All,

Sam

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