A February Thaw and Vincristine Vacation

Wow. Well, the doctor warned me that this would be a rough stretch of treatment...

We're on day 28 of 57 of misnamed "month of hell," so we've officially reached the halfway point. The bad news is we're about to restart the cycle of drugs that decimated my blood counts and knocked me down pretty hard (I apologize for not posting for such a stretch). The good news is that there are no spinal taps in the second half of this stretch (as of last week I had had 4 spinal taps w/ chemo in 22 days, and these make me notoriously fuzzy-brained and quiet.)

An Update:

Prior to leaving for last week's appointment, my Mum turned to me and in a chipper voice said "oh look, this week you only get vincristine and a spinal tap!" This made me laugh as it's a bit like saying "Oh look, this week you only get a punch in the gut and a kick to the groin!"

I like to make fun, but the truth is that I myself got rather excited when I saw this as well. In fact, because I'm in the middle of such a heavy cycle of drugs, I've privately referred to this week as my "vincristine vacation," because while I'm still quite out of it, I'm at least on my feet and can enjoy a good book, music, or the company of others.

I'm eternally grateful that this little "break" in treatment came during a February thaw here in Madison. Yesterday I just sat out on my porch for a while, and it felt great to breathe in some moist air and feel the sunshine on my face.

Last week, I was excited to see that my platelet count had jumped up to 167, within the normal range! After the bloody adventure a couple of weeks ago, I've decided that I much prefer having more than a few of those little buggers.

Unfortunately, I can't say the same of my white blood cell count which had fallen to 0.4. I guess the whole purpose is to kill these guys off though, so I'll deal with it.

Well, tomorrow will find me back in the clinic for another round of cytoxin, one of the notoriously strong chemo drugs. I will also begin taking another chemo drug orally (mercaptopurine-- sounds like a cat food, doesn't it?) for 14 days and will inject myself with another (cytarabine) for 2 stretches of 4 days. Together, these should once again decimate my blood counts, so as many good vibes as you can send would be very much appreciated.

The good news is that with any luck, this should be the hardest part of treatment and it should get less intense from here.

Take Care,

Sam

A Heat Wave in Madison and My Pants are Tight!

How's that for a post title. No, it has nothing to do with my fresh red blood cells migrating to a certain part of my anatomy, you dirty minded individuals...

Rather, my pants are actually tight. Whereas just a month ago my skinniest pants were barely hanging on, I went to put on a pair of jeans yesterday and was pleasantly surprised when I was unable to button them. Yup, that's right I'm putting on some weight and excited about it.

I'm perpetually amazed by how different "healthy eating" is for me than for 99 percent of Americans.

On another front, Madison broke the freezing mark for the first time in 28 days yesterday. After spending some time on my bike, Katie and I went for an excellent walk around the neighborhood. It hit 38 degrees -- a regular heat wave! The moisture in the air, light, and warmth of sun felt excellent. I can't wait for Spring.

Comment Question of the Day:

What's your favorite Superbowl party appetizer or food?

If I weren't trying to avoid large amounts of red meat, I'd definitely be making the "Bacon Explosion" this Sunday (pictured). Check it out, it's unreal.

http://www.nytimes.com/2009/01/28/dining/281brex.html?_r=1&ref=dining

Take 'er easy,

Sam

"Sunshine on my shoulders makes me happy
Sunshine almost always makes me high"

You think I look Bad? You Should See the Lymphoblasts...

Thursday brought another exciting day. I went to bed Wednesday night excited that my Thursday clinic visit was not scheduled until 11:30. Usually I need to be to the clinic by 8:30 or 9:00 and those of you who know me well know that I usually don't much like rolling out of bed before 9:00 unless it's to head out fishing or on an adventure.

Knowing that I needed to fast for six hours before being sedated at 12:30, I stayed up late so that I would sleep late. I also set an alarm and woke up at 6:00 to eat a big bowl of cereal to hold me over through the day. I then went back to bed. I arose at 8:30 to go to the bathroom, and when washing my hands, blood began flowing freely from my left nostril.

I held a tissue under it for a few minutes hoping it would clot and I could go back to bed. It did not. I sat in bed for an hour holding tissues and thinking "Come on platelets, pull together, I don't want to lose any more of my precious red blood cells."

After an hour and a half, we headed to the clinic early. I was unshowered, wearing sweatpants, a white tee shirt with blood stains down the front. Trying to figure out a way to control the bleeding and wear a mask in the clinic was not easy. I shoved some tissue in my nostril, put on the mask, and entered the clinic.

The nurse brought me right back to the "chemo room" where I sat with ice on the back of my neck, ice on the bridge of my nose, pinching my nose closed. The lab technicians came in to draw my labs, then we waited for the results.

By the time the results came back it was 11:30 and I had been bleeding for 3 hours. The results showed that I was LOW on platelets, the little buggers that are responsible for coagulating one's blood. How low? I had 7 platelets per unit of blood. The average range is between 160 and over 300... That's what intense chemo drugs will do and explains the bloody nose.

They then had to order a bag of platelets from the blood bank. This took another hour or so. It was well into the early afternoon before the little buggers began entering my blood stream. The bag of platelets was yellow -- who would have thought?

My hemoglobin was also quite low again. After receiving my bag of platelets we moved on to two bags of red blood cells, two bags of saline, and a bag of Zofram (an anti-nausea drug) as a pre-med for the chemo I would be receiving. My IV pole looked like a Christmas tree. On top of the IV products, I also had two rounds of Benedryl, Tylenol, and a steroid as pre-meds. As well as Acyclovir and Fluconozole (Anti-viral and Anti-Fungal that I now take every day). All of this was on an empty stomach with almost no water. My poor liver must have felt like that of Hunter S. Thompson.

If you're looking for a measure of just how much blood, fluid, and meds they pumped into me, without eating or drinking all day, I still managed to gain 5 pounds.

By this time it was well into the afternoon, and we had not so much as begun any of the scheduled treatment for the day (another spinal tap, and two more chemo injections). I went for a walk around the chemo room with my Mom. Now here's a visual -- Me in sweatpants, a white tee-shirt stained in blood, a hoodie over it unzipped, pushing my Christmas tree of blood products and meds. And to top it all off, a kleenex stained in blood hanging out my left nostril.

I looked pretty hardcore. One nurse looked at me, smiled, and said "Hi Sam. You look like you were in a serious fight and lost." Had the Benedryl not slowed me down and supressed my wit I would have replied "You think I look bad? You should see the lymphoblasts..."

I really wish I had had a camera.

Finally, with some fresh blood, the Doctor came in to do the spinal tap. I went over some side effects I've experienced with him (chest pain, abdominal pain, acid reflux, back pain, extreme fatigue, chronic blood in nose, headaches, vomiting, and a laundry list of other ailments.) Each one I'd list off he'd nod and say umm hmm, umm hmm, yup...

"Is this okay?" I asked.

"Sam, you're on a super intense chemo regiment," the Doc said... "We'll give you all of these," he said pointing at my list of twenty or so symptoms. "We just won't give you a fever. If you get a fever you need to come in. Otherwise you'll be all right. I like to call this the 'month from hell'."

I found this strangely comforting. If this is the month from hell, at least I can look forward to some less intense treatment and better days. I did find it strange however that he referred to it as the "month" from hell when this stage is 57 days long. That's a long month by any stretch of the imagination. Especially when you're getting blasted. Oh well, one month to go anyway.

By the time we finished the spinal tap, the IV Chemo (Vincristine), and two shots of chemo in the 'ole glutes, we ended up closing up the chemo room for the second straight week. Another full day complete.

Yesterday and today I've felt rather well. I'm back on the 'ole bike, lifting some light dumbells for my arms, and dancing with Katie. Life is good.

Finally, I'll share with you one more "Sam is an anomolly" story. I was extremely concerned over the last stage because despite eating about 3500 calories daily I continued to lose weight until I was down to about 115 pounds. Every time I'd ask a doctor they'd say, "that's funny, most people put on a lot of weight during this stage and lose weight in the next stage, but I wouldn't worry about it too much."

Well, I was worried, I don't much like the thought of withering away below 115 pounds. After coming off the steroids (which are suppose to cause weight gain) and intensifying the chemo drugs (which are supposed to cause weight lose), I've now began putting on weight again. I can happily report that I'm now at 130 pounds, much closer to my old norm.

I have to laugh every time I see a commercial for weight loss products, foods and services. If only I had that problem I could deal with it. I'm getting really very tired of eating meat and heavy foods. I'd about kill for a spring roll, a salad, or a sushi role.

Allright, fun stuff: Comment Question of the Day:

One redeeming quality of fighting leukemia is that I get to use two of my favorite words in the English language, hemoglobin and coagulate, without having to awkwardly work them into conversations like "you can turn the heat off on the rice and the liquid will coagulate as it cools." Technically such a statement is correct, but it always draws funny looks.

So, the question: What are your favorite words in the English language (or another language, but you need to give me a definition and explanation if you do this)?

Shout Outs:

SO to Julie for the mix CD
SO to Schryver for recommending "Man on Wire" back in the day -- much enjoyed
SO to KO, sorry I haven't called back yet -- I will soon
SO to all my friends at BBC
SO to Abby and Dederich, thanks for being "on call" last night

Enjoying the sunshine and warmth and hoping it lasts,

-Sam

On Food, and Blagoeviching

My last post began "quite a day." Well, I shall begin this post with "quite a week."

The last night I posted (Thursday) I was feeling great. I posted, got ready for bed, looked at Katie and said "why don't we go to Lazy Jane's (a cafe in my neighborhood) tomorrow morning." Now, most of you need to understand that with a lack of white and red blood cells, just leaving the apartment can be an adventure...

I went to bed and for the first time in weeks was sleeping well. Then at 2:35 in the morning I woke up and thought to myself "boy, I feel good. I can't wait for those eggs, toast with jam and seitan hash with hot sauce." I rose to go to the bathroom which is about eight feet from my bed and at step number two thought "hmm, my stomach doesn't feel quite right."

At step number four I thought "yup, here we go," and proceeded to drop to knees in front of the commode and Blagoevich so violently that I pulled a muscle in my back and stomach as well as gave myself a bloody nose. Then, I went back to sleep feeling sore, but overall just fine. One half hour later I woke up and repeated the process all over again. Never once was I nauseated, I would just wake up and think "yup, here we go again."

In the morning, I began eating timidly, a bit afraid of what might come, but by lunch was back to Amy's organic black bean and vegetable enchiladas smothered in cheddar cheese (God I love Mexican food). I'm still not sure what brought on the episode 'o vomitus, but I'll tell you this much -- I'm not going to eat a pulled pork sandwich 20 minutes before a spinal tap again. Well, I guess I can't promise that, I do love pulled pork.

I seem to be writing an awful lot about food and the funny thing is i'm not even on steroids -- I just love food, always have. To quote Jim Harrison "Small portions are for small and inactive people." I may be small, but it's not by choice and I've never liked small portions.

This weekend was great. Katie and I cooked, cleaned the apartment, and watched Star Wars. She enjoyed the movie as I bored her with drivel about the archetypal importance of certain characters, as well as the theories of Carl Jung and Joseph Cambell. It felt just like old times, and it was great.

Yesterday brought rougher seas. I was worn out and having a bit more trouble, but made it through, and today was another great day.

I'm back to the clinic on Thursday for another spinal tap and a blast of Vincristine. Any mental energy you can send my way to destroy those pesky lymphoblasts would be much appreciated.

Tonight all of my good vibes are going to Dick Bowley a leukemia fighter who had a bone marrow transplant in Atlanta today. Let you're new immune system come back like the light of Spring.

All right, to the fun stuff. Comment question of the Day:

I challenge you to come up with a better verb for vomitting than "Blagoviching"

Shout Outs:

SO to Scott for the e-mail -- much enjoyed
SO to Salmo for recommending "Sneakers" on the Netflix challenge -- laughed my ass off.
SO to Jesse for almost killing me by making me laugh so hard on a comment with the headline...
SO to the red-wrist-band-wearing colleagues at Clean Wisconsin (try saying that ten times fast)

Raising a glass to this adventure that is life (unfortunately it's water),

Sam

Fresh Blood and a Full Day

Quite a day... I woke up at 7:30 (an achievement like you wouldn't believe for me these days) to get ready to go to the clinic for 9:30am labs and a 10:30 spinal tap. It figured to be a short appointment and I anticipated being back at home by early afternoon.

Instead, after labs I waited in the waiting room for an hour talking with a woman I met, Shelly, who also has A.L.L and is scheduled to have a bone marrow transplant next week. She is a brave, optimisitic, and inspiring woman, and I ask you, my readers, to send her all the good vibes you've got next week.

After about an hour, a nurse came out and informed me that the appointment had been changed to 12:20pm, and that I must have lost my appointment card. Shoot. I asked her whether my lab results were back yet, and she went to check. She came back shortly there after and informed me that while I still have some white blood cells (low but still hangin' out), My red blood cells have fallen to 8.2 units, a rather anemic state that they usually transfuse for -- This explains why just getting out of bed has been a challenge the last couple of days.

So, I had to go back to waiting for labs to test my blood to cross with the blood bank. After waiting an hour, the nurse finally came back out and asked why I was there. "Waiting" I replied. Turned out, the lab never received the orders for the test and 15 minutes later I finally got in.

This all worked out all right, however, as in the interim waiting period I discovered that they had scheduled the wrong chemo for me for the following two weeks. It took a bit of coaxing, but once the research director looked into it, she finally admitted I'm supposed to have four spinal taps this round, not two. It always pays to be your own health advocate, although I never thought I'd push for more spinal taps.

Once in the chemo room, I was pre-medded with benedryl (to prevent a reaction with the blood) and tylenol (to prevent a fever). The Doctor was running late, so the spinal tap would have to wait. We started running the blood into me, and all seemed to be going well -- No immediate reaction. After about 15 minutes, I stood up to use the restroom, went to the restroom, was washing my hands, and experienced a strange pain in the middle of my chest. "Oh Shit."

I hurried down the corridor, found a nurse, and tried to calmly explain:

"I'm getting blood and have a strange pain in my chest."

"What?"

"I'M GETTING BLOOD AND HAVE A STRANGE PAIN IN MY CHEST!" I replied in a less than calm manner.

She and another nurse grabbed onto me threw me down in the bed in my chemo room, ripped the blood cord out of my arm spraying the bed, my arm and the wall with blood and called the doctor.

My poor mother who had just 10 seconds previously been quietly and peacefully listening to a phone message in the room alone looked completely wide-eyed.

The Doctor calmly took my vitals, concluded it was either anxiety or indigestion, gave me some lorazapam (chills you out) and some benedryl (chills you out), and hooked me back up to the blood. All is well, false alarm.

After this debauchel, we did the spinal tap which went with surprising ease. After monitoring me for another two hours to make sure my heart wouldn't explode, they finally let me go. My anticipated two hour appointment done after only nine hours... quite a day.

I am thoroughly enjoying my fresh supply of blood. It really gave me quite a boost. Please consider donating blood next time you have the opportunity. You may never know who receives it, but believe me, it will be appreciated.

My buddy Stuart who I've mentioned on this blog before is having a brain port put in his head today to deliver interthecal chemo drugs. Please keep him in your thoughts.

Till next time,

Sam

On Hope, A New Day, and A Dream Realized

We can never know what the future will bring. If one year ago you would have told me that I'd be fighting an aggressive cancer today, it would have come as a shock. If you would have then told me that today I'd proudly wrap myself in the American flag and post a photo on the Internet, I would have breathed a sigh of relief and said "at least now I know you're kidding."

Today is a great day for me, for America, and for the world. It is a new day, a day of hope, and we stand at the precipice of a great change.

I believe that while we have lost track of it, what makes America great is how much we all have in common. Today let us set aside our differences and celebrate our shared hopes and values. We can all hope for a more peaceful future, for less war, for cures for disease, for less poverty, for equal education, for health care for all, for a cleaner environment, and for happiness.

Watching a black man named Barack Hussein Obama being sworn in as President brought tears to my eyes for so many reasons today. It is a dream realized for the thousands who fought for civil rights in this nation.

It was a symbolic and overwhelming image of the ability to overcome odds and of the power of hope.

More to come... I'm moving a bit slow today...

-Sam

A Steep Climb Ahead and the Netflix Challenge

Stage 2 of the climb began today. It's rumored to be one of the steepest sections of the climb. More literally, Day 1 of consolidation and being 23 is coming to a close, and it's been a good day -- much better than yesterday.

Here's what I learned today: We're still waiting on the result of one final test, and the chemo drug (cytoxan) that they gave me today will stay in my system for around 72 hours, so please keep the good vibes coming.

This is also a stage of treatment where I'm at a high risk of infection and the doctor tells me there's about a fifty percent chance that I will end up in the hospital for a stretch of it -- most likely in about ten days. This means I'll likely need to be almost entirely home bound -- might not even get out on my occasional excursions as I do now -- which brings up my Netflix Challenge so please check out the bottom of this post labeled NETFLIX CHALLENGE.

I also learned, or rather confirmed, that I'm an anomaly (I guess I always have been). How much so? Here's a list of what I had done today in order of those that caused me the greatest anxiety:

1. Spinal Tap without sedation (This one I think is pretty normal to rank high)
2. Getting New pills I need to swallow
3. Having to get up at 8:30am and step into a -20 degree wind chill
4. Having to give myself a shot in the stomach of a chemo drug

I can only believe that the vast majority of people would bump up number four a bit, but it didn't bother me all that badly. Swallowing pills the size of regular strength Tylenol, now that is a real challenge for a guy who avoided almost all medication for 22 years because "it just can't be good for you; it's unnatural."

TODAY:

Early this afternoon, the nurse brought me a cup full of "pre-meds" before chemotherapy. The biggest of them, an important anti-nausea medication that she informed me "don't worry, everybody can swallow that, even our patients with throat cancer."

"Okay, Sam, you can do this" I thought to myself, threw it to the back of my throat, and promptly spit it back up into my hand. "Hmmm." The friendly nurse, Mary, luckily shared my sense of humor and adventure, so we decided to make crack open the capsule, make a slurry with water in a measuring glass and do a shot 'o anti-nausea -- Not ever done orally to my knowledge, but I figure if I can handle a "Flaming Dr. Pepper" (don't ask), I can handle anything. With great apprehension and a host of nervous eyes looking at me I did the shot, looked up and after a short pause responded "hmm, tastes of candy" to the surprise of everyone in the room. Well, no complaints here -- other than that each pill costs about $100... Although worth every penny if it continues to work.

Later in the afternoon, as I received cytoxan and was feeling a bit of discomfort from the LP, Katie was sitting next to me, leaning close, holding my hand, and we were both listening to my ipod with one ear bud in each of our ears. A short while later, Katie and Mum left to go to the cafeteria and the nurse, Mary, came in and asked "Where did your mom and sister go?"

I was a little loggy, and had to think for a minute. "I didn't think Kate was here, those drugs must really be messing with my mind..." I thought. ***I must pause here to note that my girlfriend's name is Katie, my sister's name is Kate if this isn't self-evident*** Another thinking pause... "Ohh, sh**, she thinks Katie's my sister."

"That's my girlfriend, not sister." I said laughing
"Ahhh, I thought you to must be mighty close for siblings."

We both got a good laugh.

TONIGHT:

The anti-nausea pre-meds included a low dose steroid, so tonight I've had the appetite of a horse and am still up at 12:30am. I feel great, as I usually do on chemo nights. It's always the day after that is hardest, so I never want to go to sleep because I feel good and know that I'll wake up feeling rough; But as long as I have my nights I'm ecstatic.

I got home after a close call of having to urinate in the car on the 15 minute commute (I'm super-hydrated), I ate a light meal and jumped on my bike for 10 minutes. I will ride my bike every day that I am able, period. Then I stretched as I watched the President bid farewell to the nation.

Katie, Mom, Dad and I then enjoyed the Badger Men's basketball game (as much as you can enjoy a game Bucky blows it right at the end -- what's with Wisconsin teams this year???).

Then, I finished the night by putting on some music and Katie and I danced together. It was wonderful -- One of those things I rarely took the time to do before cancer that brings such simple and pure enjoyment.

Please, do me a favor and take a break from your routine to think about and show someone how much you love them, we all do this far to rarely in life.

Overall a great night. I can only hope tomorrow will be as well.

THE NETFLIX CHALLENGE -- Comment question of the day:

Need a distraction from work? Bored at home? Just want to help me out? Do I have a task for you...

The doctor warns that I'll likely be pretty much stuck at home entirely (if i'm lucky) or in the hospital over this stretch of treatment. My Aunt Vicky was kind enough to buy me a subscription to Netflix, and so I need your help.

You see, I just don't know what to put in my queue. I know the types of movies/TV I want, just not individual ones. So, if you could compile a list of best movies in the following categories and post it to the comments on this post (or email me at bikeryder@gmail.com), I would be forever grateful.

Again, I will echo myself, and say that everyone should feel free to participate. Don't feel awkward if you don't know me well or we've never met. I love seeing different people's tastes, and I love getting unexpected emails/comments.

I will announce a winner at some indeterminate point and they will be rewarded -- I'm really hoping with dinner, we'll see how my white blood cells are doing and treatment goes...

The categories include:

1. Sam needs to laugh his ass off and take his mind off of cancer comedies

2. Sam's coming off steroids and is willing to admit he really enjoys Notting Hill on the oxygen network chick flicks and romantic comedies (have fun ladies)

3. Sam needs to go after the lingering lymphoblasts like Butch Cassidy blows up trains Action/Adventure (English nuts will note the alliteration of "lingering lymphblasts like")

4. Sam wants to watch his friend's/families/coworkers/strangers top 2 favorite movies of all time regardless of category, so he can think of them while he can't have visitors (Open category)

One rule: try to censor for movies where no one dies of cancer... Shortly after my mother was diagnosed with lymphoma, my sister brought home "The Stepmom" having heard it was a good movie thinking it would provide a nice distraction. This logical and thoughtful gesture backfired when the stepmom in the movie died of lymphoma at the end. Today we laugh about it; what are the chances???

All right. Take your time, make a list, and post it to the comment or email me. Don't worry if you're reading this late, I'll check back to the comments often.


NEW FEATURE: SHOUT OUTS:

I'm going to begin sending shout outs to the people who help me out through this who might never know it. I am forever grateful and amazed by my caregivers -- my girlfriend, my family, and the staff at the hospital and clinic -- and do my best to show them my gratitude. Fighting this often feels like it takes three full time jobs.

Shout outs, however, will be for those who help me in huge ways who I'm not able to thank face to face. They will also be for people I'm thinking about at the time. Tonight there will be quite a few.

*SO to Dennis for all the emails, they've helped me more than you'll ever know
*Belated SO to Vicky for the Netflix
*SO to Abby for designing and making the "chemo shirt" its a hit like you wouldn't believe and the clinic and sooo much more comfortable than having to strip down to short sleeves -- we really need to talk about this...
*SO to Terry for sending me an email out of the blue
*Belated SO to Schmidty for the Isle Royale Poster
*SO to Mark, I hope your arms doing better
*Belated SO to Ryan for introducing me to the band "The National." "Fake Empire" is the song that pumps me up for chemo and keeps me focused when I'm at the clinic. Also, thanks for suggesting "Arrested Development," makes me laugh like you wouldn't believe.
*Belated SO to Keith for the book and the card, cheered me up right when I needed it
*SO to Grandpa and Grandma Giles, I love and miss both of you -- here's hoping you find some great lion's paws in the morning, Sharky.
*SO to Grandpa Weis, It was great to talk to you tonight

All right, I had best get to bed as the hour now approaches 2:00am. Today was another good one, and if experience is an indicator I can expect tomorrow to be one of rough seas, but I am ready for it -- It is all part of the journey and as long as I can look forward to days like today I shall enjoy life as much if not more than I ever have.

Stay Warm,

Sam

"With a little love and luck, you'll get by
With a little love and luck, we'll take the sky."

Wise and comforting words from the philosopher Jimmy Buffett.