Friday, September 11th: Slanket me this, Slanket me that

Bet you wish you could have this, don't you? Well, thanks to the coolness of my cousin Steve and his wife Jen (and the kids) I now am a proud owner of the jungle-pattern slanket for my own use. Originally, when I called Steve to thank them for the gift, he wanted me to post a pic of myself wearing the slanket and my fake dreadlocks hat (thanks Philby). But, after further analysis of the potential future damage to my reputation via electronic images on the internet, I will at this point waive my right to the slanket/dreadlocks picture and just let all of your imaginations run wild with the image of this pasty irish/french canadian white boy looking like a complete jackass. To further enhance your verbal imagery, here is a pic of the rasta-hat that I received from our friend Phil in the "Fairmont Methodist" care package our friends in Raleigh sent to me when I started the fight with cancer.

Don't worry, I'm not nearly in as good a shape as this guy, as my inability to work out during treatments, coupled with the wonderful cocktail of pseudo-toxic drugs have turned me to a flabby boy. Enjoy THAT image sports fans. Once I get back on the bike (beyond my current incremental 1 minute a day increase) I'll attempt to get into reasonable shape again.

So, Bill - what does the slanket and a fake rasta hat have to do with cancer? Funny you should ask, but it's a good reminder for me of the importance of small gestures by others and how they can really make your day.

Whether a gift in the mail, a card, an email, a phone call, or a visit to 'check in' - lots of small showings of kindness by hundreds of you have really been what has brought me to the place I am now. This is a place, I firmly believe, where I am on the cusp of eradicating this DNA mutation from my body for good. If you don't believe me, just ask my Oncologist, Dr. Hinshaw.

When we first started meeting and going into treatment this Romanian doctor (I only use her ethnicity to give you a stereo typical image of how her initial bedside manner may have been-sorry all of my PC friends) it was 'all business' and not a lot of smiles. She was very matter of fact when she first told me that based upon statistics there was only a 54% chance that my cancer would respond to chemo, based on its advanced (Stage 4) progression. But once she got back from her vacation (after my PetScan results in July) and saw the results, her smiles and demeanor have taken a markedly more positive direction. When we meet now, she's pretty happy, joking, and very positive about everything.

As more than one medical professional (and spiritual clubhouse leader) has said to me "attitude is everything". Thanks to all of you, I'm on the mend and will soon be back in the thick of life, taking each day by storm. Little things have mattered, like my parents stopping in each week to 'check in' and help us keep up on the housework, the encouragement cards I receive from my Aunt & Uncle in Dayton and Tom & Jill Grubb after each round of chemo, like the week-long visit from our friend Craig in Ohio just to 'check in' and make sure we're OK, the visit this weekend from our friends Mike & Lisa from Texas, the HUGE stack of get well cards and emails, the phone calls from dozens of friends I haven't talked to in over a decade, the celebratory cigar pictures from my boys at Tiger Team 2, and the calls & emails from clients, past & present, hoping I'm doing well. Heck, we even got a gift box that contained sweet-pea crisps from our friends the Waggoners in Raleigh - how awesome is that!

I didn't try one, Amanda did, she says it was the texture of a 'Funion', but not very good. Sorry sweet pea crisp company, hopefully the recession is eradicating you and your product from the face of the earth.

So, with the power of Slanket - I say "thank you" to all of you out there. Your love and kindness has been appreciated and received, I only hope that my 'gift' of additional time in life will be spent repaying your kindness.

Carpe diem.

-Bill.

• P.S. "Cost of Cancer Update" - As of August 20th, the full cost of my treatment & diagnosis for Diffuse Large B-Cell Non-Hodgkins Lymphoma is tallied at $144,899.90. I think I'm worth it - don't you?

Wednesday, September 2: The power of pity....

Ever been given the pity look? It's one of the strangest things about having Cancer - tons of pity from just about everyone you meet who finds out about your disease. Looking back, I'm sure I did the same thing to folks who I met who told me they had Cancer. You try your best, but sometimes it's unavoidable.

I want to take this chance to give props to all of my co-workers at BurkettDesign, who have managed to hide any internal 'pity' they have - everyone at the office has been awesome, and is treating me just the same as before. That is, except everyone holds doors open for me when I travel across the hall or to the can. That's actually been a nice perk. Thanks guys - it means a lot to me to have one part of my life where I feel like things haven't changed.

But from time to time, pity look does have some advantages. Take getting a seat in a restaurant......

A couple of weeks back, our friend Craig came to visit from Ohio and we went down to Capitol Hill in Denver to Steubens, a pretty popular dinner place on 17th Avenue (http://www.steubens.com/). When I called ahead, there was a 1 hour wait to get a seat. We got there a few minutes later. Craig was going to put our name in to get a table, and I had a 'eureka' moment and waived him off, and went through the crowd in my dual-crutch baldheadedness to the hostess and put our name in for a table. Before you know it - BAM. We're sitting on the prime outdoor seating spot on the Avenue. Thank you sickly cancer look.

And I didn't even have to tell her I was sick - the crutches give me that extra unspoken 'edge'. Bald middle aged white guy, crutches.....you do the math. When I get done with this disease, ditch the crutches, and have hair again I'm gonna have to hire Mr. T to force the pity on others....I pity the fool who messes with B.A. Baracus under my employ.

Lately in my professional world I've been meeting some new clients and people who didn't know me with hair and sans crutches. It's pretty interesting to see how people react. Typically, if it's the first time I've met them and they ask what's up with my hip (they think I'm just a sexy-bald dude, and don't know me w/hair) I'll say that I've got a mountain biking injury - torn labrum. Since we're in Denver, that excuse is pretty much par for the course. There have got to be more back and sports med doctors here per capita than anywhere in the US. After a couple of meetings and there is a comfort level, I'll let them know the 'full' extent of my issues. They've all been pretty cool, as well.

But sometimes, if I'm in a non-professional situation or feeling a bit ornery I'll just tell someone who asks the 100% Gods-honest truth. It's interesting to see people's reactions if I get on an elevator and someone asks. Here's a typical situation I've experienced several times in the elevators downtown at the office or in the parking garage:

• Elevator opens
• The people inside move out of my way like Moses parting the Red Sea.
• I smile, make eye contact (I most always do-if any of my new elevator mates are murderers they'll take pity on me).
• Door closes, begin our ascent/descent.
• Someone asks "oh, what's happened to your leg?".
• "Cancer" I add.
• Cricket-laden silence.
• Nervous twitching by those who are thinking "sh*t, get me out of here"
• "Uh....oh.....I'm so sorry." answers the nice lady (99% of the time the questioner is female)
• "No worries, I'm making it my bitch." (OK, I say some other disarming quote, but I AM going to do it one of these days."
• Chuckles. Visible expressions of relief by my new friends.
• One of the guys will give me a pat on the back and say "keep it up" or "good job". Seriously, it's happened.

Don't get me wrong, I have no animosity towards anyone who asks, appears uncomfortable, gives me an expression of pity, or visually shows any other awkwardness. It's really OK - I'm cool with it. I'm sure I've had the same reaction towards someone with an obvious disease or condition in my life. We all fall short, you know.

The reality of having a potentially (but not in MY case) terminal illness really is a great way to not sweat the little stuff - and your tolerance for awkward behavior or being offended goes WAY up. I'm generally happy for human interaction, with little expectations.

What's the moral of this posting? If you, a friend, or a loved one gets Cancer or another serious/terminal illness just go ahead and treat them like a normal human- it means a LOT to them, trust me. I now have a window into the 'other side' of the world, and have a new found appreciation for those who aren't part of the 'normal' crowd.

MEDICAL UPDATE

• Tomorrow is 'Make cancer my bitch Thursday' round #5. Should be done by 4 pm Mountain - send a good word to the man upstairs, or enlist your clubhouse to put in a good word on my behalf.

Carpe diem.

-Bill

Friday, August 28th: The mystery of Quaker Oats & Farts

It's the end of a glorious week here in the Mile High City, and as I sit here in the study on a late night listening to the coyotes howl outside our house (seriously, they are right down the block carrying on like it's mating season) - I'm thinking it's time to talk about some digestive destruction at the hand of the chemotherapy regimen, and a little high-elevation phenomenon that can make one embarrassed and laugh all in the same moment.

It's been the standard post-chemo reactions since my last posting right after treatment #4. Days 4, 5, & 6 "post-chemo" are the 'crash days' when my white blood cell count drops to about 10% of normal levels. It's a strange feeling, as I finish my steroid intake on the Monday after treatment, I descend into this wierd world of hazy exhaustion.

Many folks have asked me 'what does it feel like after chemo?" Here's the best description I can muster - I'm a 'stomach sleeper' and usually wake up face down spread eagle in the morning, so on days 5 &6 when I wake up my body feels as if a mack truck has hit it. In a nutshell, I feel such a mind-numbing exhaustion that all my limbs and body can barely move - even my fingers are tired. That's the only way I can properly sum up the experience is that the little digits are actually so tired it's tough to move them. So, Bill - how in the hell do you manage to get up and go to work that week? Only by the power of Quaker Oats do I manage to drag out of bed and get downtown.

Before I continue, I want you to know that we have some dear family friends who are members of the Society of Friends. While endorsing the consumption of "Quaker" oats as a food product I do not endorse the characterization of those who are members of this religious sect as all being pasty, slightly chubby, colonial-looking white men in funny hats with white scarves around their neck. Ok, now my PC statement is done and we can continue....

I used to make oatmeal before long bike rides or Morgan's triathlon days in Cincy, and EVERY TIME it prevented the dreaded 'bonk' that would plague me from time to time when riding with friends. Amanda started making oatmeal for me when this chemo treatment started, and let me tell you I can absolutely tell you it works. A little bowl of the slimy snot-like concoction and I can make it through the morning. I'm still a bit tired, but it helps get me to work-readiness and cope with the day. As the post-chemo week ends, my energy level recovers and I don't really need the morning snot-like food regimen, and can go back to regular cereal & fruit. Then, I get about 2 weeks of 'good energy' before going in for round #5, which happens next Thursday.

The chemo drugs basically go after all fast-growing cells in the body, of which Cancer is the 'first string'. But, there are also 'second' and 'third' team cells which get their asses kicked by the chemo drugs including, but not limited to, hair cells (hence the baldness and random manscaping) and digestive tract cells (esophagus, stomach, mouth/tongue cells). So in addition to having random baldness throughout the body (not just the head - sorry for the inferred details), the digestive tract is generally whacked out all through the process. Typically, most chemo patients throw up for a day or so after the treatments, but I've been lucky in that it hasn't happened yet (knock on wood). Also, you can get mouth sores (another wood knock), and generally have digestive wackiness (hence Miralax blessings). I've always got some sort of indigestion, my food can taste like metal, my taste/likes of food changes all the times (don't even let me smell an egg right now - blech!),but the most humorous thing is the incredible amount of gas production that is happening down there.

When we used to visit Colorado, I almost always passed gas like a madman out here. I'd heard that some 'flatlanders' (those of you down at sea level) could experience this phenomenon when coming up to elevation. It happened again when we moved out here, but had settled down as our bodies adjusted to higher elevation. One of my good friends since childhood, Craig Clark, came out for this past week to visit us from Ohio, and during a trip to Rocky Mountain National Park last week he coined the phrase "HAF" to describe the incredible amount of methane being produced in my Jeep by the two of us while on Trail Ridge Road at 11,000+ feet. What does this stand for, you ask? "HIGH ALTITUDE FART". Let me assure you, between my chemo belly and his flatlander body we could have bottled volumes of the stuff to serve as a 'green' power source. I felt like a renewable energy power plant up there, but unfortunately for my poor, poor, wife Craig's HAFs have stopped, but my chemo-inspired HAFs continue. Here's hoping for the sake of my wife and dogs that the HAFs stop when chemo is completed and the drugs are out of my system come mid-October.

TEAM UPDATE

• My old friend Megan back in Ohio has enlisted her sister onto Team Baker. Here's giving props to Kailey and her friends on TEAM BUDDHIST who are on board the bus. Spin a prayer wheel and chant a bit for me Kailey - welcome.

• I heard through the grapevine at my in-laws that some close Fritz family friends on the UNITED CHURCH OF CHRIST team are in our camp as well. For those of you who don't know, that's one of those MethodPresbyLutherPalianesque groups.

DOCTOR UPDATE

• I had an appointment this week with Dr. Ross Wilkins, my orthopedic oncologist at Presbyterian/St Lukes Hospital in Denver. They took some X-rays and - yep - there's more bone a-growin' where the tumor holes in my pelvis were. I'm down to one crutch, and have been given clearance to start doing stationary bike, elliptical trainer, and swimming at the YMCA. I'm hoping to get my first workout in about 5 months in this weekend downtown - whew! I've been going stir crazy.
• Many of you knew that I was a possible candidate for Proton radiation therapy at Massachusetts General (one of five in the USA), and had been weighing this option versus staying here in Denver for conventional Photon radiation. We had a consultation with the Radiation Oncologist at MassGen this week, Dr. Evelyn Chen, and after reviewing my test results from the start of chemo through the PetScans after round 2, I'm no longer a candidate for Proton since I've responded so well. So, I'm staying in Denver and should start the radiation in the 3rd or 4th week of October. I'm relieved in that I'll be here at home, and also able to continue to work. While five weeks in Boston would have been great, I would have been pretty bored after a while.

GREAT LINK

• Check out this link to a video from the Global Cancer Summit recently run by the Livestrong Foundation. I found it inspiring: http://www.youtube.com/watch?v=OGfgReJU8bM
  

There it is - stay cool, and thanks again everyone for your continued cards, letters, emails, notes, and phone calls - keep them coming.

Carpe Diem.

-Bill

Sunday, August 16th: The Cancer Soundtrack - a no Bette Midler zone

As you know, I love music - all of it. I've been thinking about my Cancer Soundtrack for a while, reviewing my own tunes, the CD's many of you have made for me, and other tunage on the radio. While this isn't an exclusive list, it's a good sampling of the journey thus far - I hope to compile a "Part Deux" once I finish kicking the big Purple Pansy *ss of Lymphoma - but you'll just have to wait a couple of months for that one...

HERE WE GO - CANCER SOUNDTRACK, MAY 20TH THROUGH AUGUST 16TH

"Start the Commotion" by Wiseguys. What better way to kick Cancer's ass than to bring it to the game? I used to listen to this on solo bike rides on the Little Miami Trail in Cincy - cranking away miles by the dozen. http://www.youtube.com/watch?v=iBJmR0uA5jQ


"Funky Cold Medina" by Tone Loc. Yeah, I'm whiter than Casper the friendly ghost(especially now) but I went to High School in the late '80's - therefore it's my right to appreciate the pure awesomeness of Tone. Oh yeah, Craig Clark and I broadcast this over the stadium loudspeaker during a track meet at one point and got in trouble. Remember, the Reagan years were all about purity and innocence (ha ha).

http://www.youtube.com/watch?v=fUTqa5cjOS0

"Clocks" by Coldplay. Yeah, I'm whiter than Casper the friendly ghost, but I love the song - gotta go with the gut! Gotta have one top 40ish adult contemporary on here, eh?

http://www.youtube.com/watch?v=5KkWGy7W3_o

"Fanfare for the Common Man" by Aaron Copeland. It's the one classical music song that every one likes - so kick *ass, so inspirational, quintessentially American. It was originally commissioned for the Cincinnati Symphony during WWII to give us all a kick start against the bastard fascists and Nazis. It inpires the humanity of normal folks like me - the common ones.

http://www.youtube.com/watch?v=Xzf0rvQa4Mc

"I'm Alright" by Kenny Loggins. Not only does the song pick you up, but the images of Bill Murray slurring and the dancing Gopher from Caddyshack can put a smile on your face regardless of how bad your day is - if it made me smile when I was looking at a diagnosis of Cancer, it can make you smile too.

http://www.youtube.com/watch?v=-WQNMWBSGUQ

Any song by Mahalia Jackson, period. This woman was the 'high priestess' of gospel music long before Arethra or any of the others. You should really listen to her songs - talk about struggle, pain, and triumph. Considered by many as the most ground breaking, influential, and talented African-American singer of the 20th Century, but she never made much money in the era of Jim Crowe. Too damn bad - pull some songs of hers off of itunes - she is inspirational.

http://www.youtube.com/watch?v=QYijLl5PRRg

"Pretty Amazing Grace" by Neil Diamond. This gem off of the old man's most recent album is classic - I accidentally discovered the tune, and it was a good pick me up when I was in the 'darkest' times of this cancer journey -the weeks of unsurety between Vail and Boston when I was being poked, prodded, and tested all over the halls of the Massachusetts General complex. It could be a love song, a spiritual hymn - it's up to you.

http://www.youtube.com/watch?v=7YLQhVlC36g

"One Tree Hill" by U2. Any cancer soundtrack has to have something from Joshua Tree on it, don't you agree? Hey you kids under 30 -you BETTER have Joshua Tree in your Ipod, or ELSE. Seriously, it's an absolute travesty of musicology to not have the best U2 album at your fingertips, and this is my personal favorite on the LP.

http://www.youtube.com/watch?v=H2kWgm-0xmM

"Ohio" by Over the Rhine. This is a beautiful haunting melody about the Buckeye State by the home grown duet of Over the Rhine. While I no longer live within the borders of the Motherland, I'll always be a son of the Land of the Beautiful River in my heart.... http://www.youtube.com/watch?v=v-c7ir1K_1Q

Remake of "Video Killed the Radio Star" by the Presidents of the United States. This one comes courtesy of DJ Josh Vogel and his Tiger Team 2:2008 "Pass Less, Rush More" Soundtrack. I don't own the POTUS album, but the TT2 albums from our annual boys' trips are precious - especially this one from 2008 in the Black Hills of South Dakota & Wyoming w/mustaches and RV travel.

http://www.youtube.com/watch?v=htb6OKuR4DA

"Mud Football" by Jack Johnson. Another classic DJ Vogel TT2 soundtrack (2003 "Hit the Mitt" version from Michigan)- an inspiration for the days when I'm off crutches, riding my bike again, and hanging out with friends and family for a nice backyard BBQ.

http://www.youtube.com/watch?v=z7fM-CDnU8w

"Light & Day/Reach for the Sun" by the Polyphonic Spree. The energy of these doo-gooder hippies is awesome, and I have listened to this one over and over while watching those big bags of IV drugs drip into my system. Look at these guys - how can that energy not help pump up your system to kick this Cancer's ass? This picture says a thousand words. Go get the song - you won't regret it, I promise.

http://www.youtube.com/watch?v=rHJo_klmPcA

Carpe Diem.
-Bill