10k down, miles and miles to go

The weather in Atlanta has been March-like this weekend, with highs in the 60's. I took advantage and ran 5 kilometers twice, which I will probably regret, having previously run a total of 12 miles over the last two months. But here's the thing. If you are a runner, you run whenever you can. Warm weather makes it easier, but most of my running friends and I would never let a sub-20 degree morning in January keep us from getting in some road work. You do it, because running is what you love to do and because without it you risk turning into a complete ass, at least according to those with whom you live. 

When you have cancer, it's a little different. You don't do stuff because you enjoy it or because it makes you amiable. You have a better reason. So when they tell you they're going to zap your backside once a day for two weeks, and that it might turn you mocha in places you were previously pasty white, you do it. When they want to pump you full of poison that will make you nauseous, cause you to need Imodium in the Sam's Club 500 count bottle, or turn your chest hair orange, you do it. OK I made that last one up. I'm only one chemo treatment into this new routine, and it's probably best to assume there are many more to come. It's easy to sound tough about it when you're feeling good, as I am now. What's hard is pushing through all the crap (meant figuratively...mostly) and eating the day after chemo when it's the last thing you want to do. It's drinking 2 gallons of fluid on the days when you just want to curl up and watch ESPN2 all day (because one can't get enough bowling, women's college hockey, etc.). 

I wasn't so good at those things the first time so I lost weight. A lot of weight. As most of you know, I'm not somebody who was fighting to knock those last ten pounds off. Thanks to (reasonably) good living and all those miles on the roads, I've weighed about 170 lbs since my senior year and Briarcliff High (shout out to you Barons). When the nurse weighed me at 162 a week after chemo, I knew I was in trouble. So after 10 days of packing in the calories, I'm within a donut or two of 170 now. Just in time to start all over again this Thursday. 

Our neighbor, the drug rep (the legitimate kind, so no help with that brownie project we talked about, DG), came by today with lots of good info about how to prevent side effects from getting to Stage 3 or 4. Who knew side effects had stages just like cancer does? After selling oncology drugs for years, she's heard it all. If you ever want to talk diarrhea, especially the chemo-induced kind, stop by and I'll introduce you. Seriously, thank you Jackie for caring and for sharing! By the way, I guess we owe our real estate agent Steve Tinter big thank you for 16 years ago putting us on a street where we'd eventually be surrounded by MD's and at least one pharma-rep. It's a bit like what David S said about living in Druid Hills. If some kid falls on the ice on Ridgewood, six pediatricians swarm in to check vitals. It's very comforting.

The road I'm on is very long, and I've taken only a few steps down it. But miles and miles from here, there's one helluva post-race party. You're all invited to join me there. Just make sure to leave one of the porta-potties available for me, OK? 

Thanks for the Gum Ball, Mickey!

If you do not get that reference, chances are you are too young to be reading this blog. So stop. Unless you grew up in another country where they didn't sell these cute little gum ball machines:

Why the reference? Somebody out there sent me a book yesterday and I'd love to thank them for it, but I have no idea who it was. Oh I have my suspicions, but given the big speech last night and all that ruling-the-free-world stuff, I highly doubt he had the time. So whoever you are, "Thanks for the cancer book, (insert name here)!"

I'm in what hope will continue to be a state of bliss. My last oral chemo for this round is tonight, and I'm feeling pretty close to normal  as I have for a week now. At the risk of dooming myself to future side effects, I'm OK with a week of less than perfect followed by two weeks of goodness. I know each time the toxicity is building up so it may take longer to feel normal, but I'm also smarter about heading off those effects before they get bad - or so I hope!

So unless I have something particularly funny to say, I might take a little break from blogging and enjoy the somewhat misguided notion that I'm completely fine. Now if it would just warm up enough for me to get in a good run!

Sleeping Potion and Baby Lotions

So my mission last night was to find the right combination of meds, behaviors, and imbibements to result in sleep. I aligned everything I had in my granny caddy (a Rubbermaid bin that houses all my prescription medication), and carefully looked for words like "do not operate machinery" on the warning labels. Then I grabbed the remote, the new issue of Wired, and a bottle of Pinot Noir and headed to the couch. I decided to forego the prescription medications, since they have all those annoying primary effects. I considered the cable series Spartacus, but decided the combination of slow motion gladiator gore and regular-motion gladiator soft-porn wasn't likely to result in restful slumber (at least not for me, but possibly for the gladiator). I went with Old Dogs, the delightful tale of Mork and Vinny Barbarino, or whatever their real names are, as bachelor business partners who must take care of Mork's illegitimate and heretofore unacknowledged twin spawn for 2 weeks. Yawner  - perfect! I slipped in a Tylenol PM just after the final credits rolled and read a couple of articles in the mag. I made it upstairs and... woke up some 6.5 hours later thankful for my Pinot and my Uverse Starz free trial.


Elizabeth, running partner and skin doc extraordinaire, did read yesterday's post and wanted to make sure my colorfully described skin issue was nothing to worry about. She declared me well, at least on the outer layer, but did leave me with some new (infant) cream to use on the spots, which was very much appreciated! It was also good to see her again a week after my low point so she could share with others that I'm indeed looking much more like myself this weekend. 


I've used the Baby cream a couple times now with no ill effects. I need to fill up my Gerber bottle with pinot now and choose my movie, so night night all! 


Where's my binkie?

Ewwww! What's That?

Ladies, just in case you were wondering, should you happen to see your man au natural for the first time in a while, the non-word that should come out of your mouth first is not "ewww." "Ooooh" is a near homophone with a very different connotation, and would make a much better choice given the fragile egos of those of us in the less-fair gender.

Still, when faced with what she was faced with, I guess you can't blame Marcie. And it was far from an intimate moment, by the way, as a child or two also occupied the bathroom while I disrobed for my morning shower. The source of this exclamation is what I hope one of our Dr. friends will confirm is a perfectly normal side effect from radiation. I have, for lack of a better description, what looks like the result of me giving up a quarter of the way through a tattoo session in which I told the artist to give me a leopard-print belt around my waist. Seriously. Little freckles in a band about a half inch wide going around my left rear quarter-panel. If it doesn't fade, I know what I want for next Chanukah - no sense leaving the job unfinished, right?

By the way, remember me calling Lunesta my new BF? Well, we broke up. Bitch wouldn't let me sleep and gave me a freaking hangover the next day. I'm done with her. Who knew the 2 a.m. Sportcenter is the same as the 5 a.m. one?

I met my Imerman Angel match Marc via phone yesterday. Great guy, unbelievable story with a "no evidence of disease" ending. He's a runner like me and may be reading my blog for the first time. I did a mile today Marc - my driveway run...

Today was a GOOD day!

I'm eating like my old self, was up and around in time to drive big A to carpool, and I generally felt more like myself than I have in a long time. Now if me and my new BF, Lunesta, get along tonight, all will be right in my world.

So, I left you with a cliffhanger. How was The Group? Well, other than the odd meeting opening ritual of everyone taking off their shirts to show off their chemo ports (awkward, since I was the only dude)... nah, just messing with you. It was really good. It's a small group, people my age, some older, some in the middle of the fight, some long-term survivors (including a survivor of a Stage 4  liver metastasis!!) It was 2 hours of good stuff.

Tomorrow I meet my match from Imerman Angels on the phone and I get to see my old partner Tom (for anyone who doesn't know me well, I mean partner like business partner) who happens to be in town for work. Haven't seen him since not long after My First Time. Sounds like it could be another really GOOD day, huh?

If you group hug me, I'm gonna puke!

Cancer is a lonely disease. Even when surrounded by people who care about you, love you and would do anything for you, it can be lonely. That's why there are support groups, but I've never been a big support group guy. I just picture a room full of people a lot older and sicker than me saying things like:

Bertha:  Hi, I'm Bertha, and last month I had a colectomy 
Group (enthusiastically): Hi Bertha!

Oy vey!

But I did hear about a local group and I'm going to give it a shot tonight. If there's really a Bertha in attendance, I will not be able to suppress a guffaw.

Even cooler, the folks at Livestrong, my favorite charity-started-by-a-guy-who-looks-increasingly-guilty-of-blood-doping, referred me to something called Imerman Angles (www.imermanangels.org), that matches people living with cancer with those who have survived, often the exact type and stage that the patient is dealing with. You call in or fill out a form online that does a great job of getting the details of who you are, specifics about the cancer you have, treatments you've had or plan to have, what you're most concerned about, etc. Then you get to rank how important each of those factors are in making a match.  I did it last night, and before lunch today, I received a call from a "matcher" who listened to my story and who will look in their database and make a match. I'll let you know how it goes from there, but I had no idea there was such an amazing service available. Of course it's free, and they even provide prepaid phone cards to people who can't afford to talk long distance to a match.

There's a special place in heaven for people who come up with ideas like that. And when I get there in 50 years or so, I'm going to be sure to thank them. 

Can I kick it?

Many thanks to one of my farthest-away, yet closest supporters, Ghila, for today's musical inspiration... Listen past the first few seconds, there's a song in there.

I'm told my late-night posting is not as concise, so I'll try to stick to respectable hours. Today's amazing moment was when I received a call around 6 pm from Sherrie, the nurse at Dr. Z's. I had called her yesterday at a particularly low point before certain meds had kicked in to control the GI fun. She was concerned about me and wanted to make sure everything was under control. So she called me. On her time. And, no, Stu B, I don't think it's because she's fallen under my spell.

I can't even begin to compare that to the experience I and others have had at our favorite local University hospital. Just today one of our readers was abandoned for hours on end, left to decide whether it was important to reconnect the heart monitor after going to the bathroom. Answer: yes it was important, but nobody came to check when it wasn't reconnected for over an hour, so disconnected or dying apparently nets the same response. Not seeing an actual doctor for 18 hours until literally dressed to leave, missing procedures because the staff on the floor forgot - you know, the usual.

Sorry, I know this is supposed to be about me getting better, but now I'm just getting pissed. Some of our closest friends are amazing doctors and nurses working in that very hospital, and we literally owe our lives to their dedication, and to the great medical work that gets done there. The people working there know everything there is to know about treating patients, but treating people? That's where the institution falls flat on its face.

Well, I feel better now... And like I said, that's what this is supposed to be about, isn't it?

Hurts so good

The Coug was on to something. And spare me the history lesson about his last name. If the record company pays you, they get to call you whatever they want. Why do you think people still call me "Emmie B?"

Focussing on the title and not the actual lyrics, I think John was talking about exactly what I'm feeling tonight. If your troubles are so few and far between that you notice little pains, that's pretty good. So my heel hurts tonight, so what? This morning I'd have taken that pain in a heartbeat. Hurts so good.

If I weren't typing this on my phone, I'd totally go into the story about the three Iranian guys working in the kitchen at Camp Barney Medintz the summer that song came out. We inserted their names for words in the chorus (e.g. "Hertzel" for "hurts so", "Bay" for "babe," etc.) to hilarious approval of many of my fellow campers. But you had to be there. Come to think of it a couple of you dear readers were there, weren't you?

Separately, you know who you are over there in a dark corner of Clifton Rd. We are thinking of you tonight and don't hesitate to call anytime, seriously. Especially so we can listen when you give some poor tech the riot act over how you've been treated tonight. Much love...

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So, how's he doing?

Geez, you take a couple days off from writing and everyone wants to know if something's wrong. Only kidding of course, I truly appreciate the outpouring of support.

Truth is, when you get chemo, bad stuff happens, often in one's GI tract. But what I'm quickly learning, mostly at the business end of the whoop ass stick wielded by my amazing wife, is that you figure out today's side effect, pop the right pill and go freaking LIVE YOUR LIFE. Easier said than done? Sure. But it can be done, so that is what we are doing.

Adele, you are an incredible friend for showing me the way. Not to mention for the soup. I'm not suggesting anyone go looking to get cancer, but if you should happen to stumble into the shallow end of the gene pool, the chicken rice soup makes it nearly bearable.

Who knows what tomorrow may bring. Whatever it is, I will remind myself that Tomorrow itself is a pretty sweet thing.

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Press On!

As I sat here feeling a little sorry for myself yesterday for letting nausea get the best of me, Marcie received a letter from Stephanie, whose kids we've played various sports with over the years. Stephanie and Michael are also good friends with several of our close friends. We ran into them at, what else, an indoor soccer game last weekend and told them about my cancer. Stephanie's dad and brother in law had just gone through the same thing.

The letter contained a charm with a buffalo on one side and the words Press On on the other. It comes from a research foundation http://www.pressonfund.org/ that is the work of two families searching for novel and less toxic treatments for two types of childhood cancers. The message is compelling. When a storm comes the cows run and hide but the buffalo charge through the storm, with much higher survival rates.

The thought of facing childhood cancer scares me more than anything I can imagine, but the message this family shares with us is a gift one can never repay.

Today I start to press on!

Live from the Chemo Room!

I've been hooked up for a couple hours now, getting all sorts of not-chemo infusions. Anti-nausea drugs, steroids, a calcium-magnesium cocktail, and a shot of Jim Beam. The chemo comes last apparently. Then I get to go home and try to organize the collection of pills that now fills my night table. Seriously, it looks like it belongs to an 80 year old woman (no offense, octogenarians, nonogenarians, or Marcie's 102 year old grandmother). Marcie says all it's missing is a crochet Kleenex box cover.

We're totally scoring points with the nurses here. First, I showed up with a plate of Marcie's cookies for them, then she offered to pick up Chick-fil-A when she went out to get salads for the two of us.  If you treat the cable guy nice, he might "accidentally" turn on HBO for free. Not sure what we can expect here. Any thoughts? (That's my way of encouraging you to comment on my post.)

Here's how much of an anti-cancer diet freak I've become. I'm sitting here debating whether I'm going to eat the dressing that comes with the salad because I'm sure it has high fructose corn syrup and other crap I shouldn't eat. I'm trying to reduce the processed food intake big-time (Chick-fil-a notwithstanding). My Facebook friends already saw that today's breakfast was steel cut oats with flax seeds, blueberries, and a little agave as a sweetener. Dinner last night was a stir fry that included my first ever attempt at tempeh. I've had it before (I think it was with Stan D at R. Thomas on Peachtree - sound right, Stan?) and it really was good, almost meat-like. My attempt - not so much. Wasn't bad, but it tasted like brown rice patty with soy sauce. 

Anyway, I did a little work while the infusion pump pumped away this morning, and will now take a break to have lunch with my beloved. Next time I'll bring candles and hire a violinist. 

Twas the Night Before Chemo

And all through my head, not a brain cell was rested as I lay there in bed.
I wondered if chemo my stomach would turn or whether the IV would make my veins burn
My doctor had told me there was little to fear, no nausea nor hair loss would likely appear
Some tingling in hands and feet could be felt, "Peripheral Neuropathy" I think it is spelt.
Still chemo makes cancer seem so much more real, and I'm not really sure how that makes me feel
I'm a fighter, an athlete, and a warrior I say, but Ali, Jordan, and Sun Tzu had their bad days
A day when for all one's bravado and talk, you wonder if you really can walk the walk
Oh I'll beat this for sure - I have not a doubt, but tough guys like me still can call time out
To catch one's breath, to remember why you've chosen to punch cancer right in the eye
To be there for family first and foremost, and to be able to one day stand up and boast
"I won or I tied, I'm not really sure, buying time till they told me 'We now have a cure'"

Me on Chemo Eve
Big C has no idea
what's coming!

(Actually, chemo has been delayed a week due to the weather in the Atlanta area, but I had this one written, so I figured I'd post it anyway)

UPDATE - Now we're on for this Thursday for my first Chemo. I guess those cancer cells just couldn't wait to start getting their butts kicked. Here I come, like Jimmy Superfly Snuka off the top rope! (Ladies, ask your husbands or other men who watched wrestling in the 70's on Superstation 17). 

All Kidding Aside - Speaking of Kids...

As any of you dear readers who are parents know, the hardest part of getting through challenges like the one I'm facing now is helping your children get through them. The only thing harder would be, G-d forbid, if it were your child who had the disease. Some of you have faced that, and my heart goes out to you. When the parent is sick, you want to protect your kids from fearing the worst, while not pretending that they don't know something's wrong. And once you figure out how to talk with them, you worry somebody else will say something that unravels the message you've so carefully crafted for them. With a lot of help from many people, especially you B.L., we developed a strategy that we think works for us.

Our kids know I have colon cancer again and that it has spread to my pelvis. They don't know exactly how serious it is, but they all understand it's not good news. They've each asked if I'm going to die. We've told them that while everyone dies some day, I'm planning to fight as hard as I possibly can to make sure that I don't die for a very long time. So no long faces if you see them, OK? They read right through people, and we want them to hear and believe that message, just as Marcie and I do.

Everyone thinks their own kids are amazing, and you can take comfort in the fact that some of you are right. I happen to know my kids are incredible. It's not just that they are bright, articulate, good looking, tall, smooth-skinned, and germ-resistant, or even that their poop is great-smelling. What amazes me is how absolutely normal they have been after 6 months of world-rocking news about their parents. Don't get me wrong, they've each had their moments. But after seeing their mom seriously injured and hearing their dad is dealing with cancer again, they've been more like themselves than I could ever have imagined, or prayed for. I hope they will always be comfortable talking with us about how they feel and that they will always know it's OK to be scared, sad, mad, or just confused about what life is sending their way. Marcie and I plan to be there to remind them about that until they each turn 65, After that, we're still planning to be around, but it's up to them to remember that lesson.

Pantries, and wi-fi, and pleasantries… oh my!

We arrived at the Memorial Sloan Kettering outpatient clinic promptly at 0900, having completed the 30 foot indoor commute from the Marriott Courtyard to the tragically-named facility. BTW, Marcie and I chuckled at the directions from the hotel staff.

Marriottian: "You see those doors past the elevators?"
Cancer-tourists: "Uh, the ones that say 'Emergency Exit Only'?"
Marriottian: "Yes, you just go through those doors, and you're in the hospital! Can I interest you in a late checkout?"
Cancer-tourists: "Maybe later. We're going to contemplate the deep meaning behind the label on those doors first"

Anyway, MSKOC (don't pronounce that phonetically, especially in front of your kids) sure does know how to treat its patients and the patient people they brought with them quite nicely. As the title of this post gives away, they do in fact have a nicely stocked pantry in the Guinness Book-worthy large waiting room and free wi-fi throughout the facility. Sweet! I was all set to catch up on Myth Busters on my Android-powered phone, when they called me back. I had barely gotten to the opening credits!

So it's a very efficiently run gigantic healthcare facility. Big deal - you see that every day, right? Here's the weird part, the people there, and I remind you this is in NYC, were all, wait for it, nice. I know! But here's the weirder part – everyone we dealt with in NYC, from the bagel shop counter people, to the 22 year old waiter at the 102 year-old Italian restaurant we went to with Marcie's brother, to the Marriottians, was nice. It's like the snowstorm last week froze all their New York DNA and they haven't thawed out yet. Not one person told me to do anything untoward to myself. Well, maybe the cabbie who didn't listen to my directions as to which bridge to take from LaGuardia to Manhattan and who was rewarded appropriately by my lack of tip, did. But if so, it wasn't in English, so that doesn't count.

Now for the part most of you want to know, did the Wizard cast any spells or otherwise change the treatment plan? Well, not really, or maybe only slightly. There's this mutation that if I have it makes some agent that they could add to my chemo potentially more effective, but it takes a couple weeks to work up the slides to find the mutation. So, we'll talk it over with Dr. Z (actually it's "Sz", but it's pronounced Z, which is my way of closing the loop on the phonetic reference I made earlier) tomorrow. But the bottom line is the Wiz is on the leading edge of all this cancer stuff, and she thinks I've received excellent care so far and that all the right decisions are being made by the Docs here in ATL.

So, we saw Cousin Stan, Brother Steve, the Wizard, and even, quite unexpectedly, one of my all-time favorite people from high school, while in NYC this time. Next time we go back, we're hoping to do better in the Wicked rush ticket lottery so we can see the "real" Wizard on stage. And maybe we'll get some good news on how I'm doing and what new potions they've cooked up in the land of pantries and wi-fi and pleasantries.

We're off to see the Wizard...

Technically, she's an Oncologist, not a wizard. They're pretty similar, minus the wand and plus a few years of school in a place way less cool than Hogwart's. What I'm trying to say is that I'm going to NYC for a consultation with a Dr. at Memorial Sloan Kettering Hospital. 

 A quick aside: Somebody in marketing should point out that the word "Memorial" should never be used in hospital literature, let alone in the freaking name of the place. What were they thinking? It's like saying "Hi, welcome to Bankruptcy Financial, how can I screw you?" or, "Our special today at Sushi Parasite Palace is the fatty tuna."

We're not expecting to hear anything different from the wizard  Dr., but she may be aware of some trials that would be good to know about should our planned treatment not give us the results we're looking for. 

Let me back up for those who are just catching up. The fine folks at Emory did finally determine that  the pain I've been having in my lower back and left leg since October was from cancer, and the source was colon cancer, even though I've had 5 years of clean colonoscopies, not to mention living a red-meat free lifestyle since 2003. Makes me want to march down to the Varsity and have them walk me a couple dogs. 

I liked the people at Emory. Most of them were great. But when you have the attitude I do about my cancer, namely "bring it on be-yatch, I'm a freaking P90x-ing, marathon running 44 year old bad ass, and I'll be damned if I'm going to let you take me out of the game," you want the medical oncologist in charge of your care to put on the Maori War Paint and do the Haka when he comes in the room. (No idea what I'm talking about? Rent Invictus, or click here - then rent Invictus). The guy at Emory just doesn't have it in him. Nice guy, brilliant I'm sure, but he's no warrior. 

So I'm now with Dr. Steve Szabo at Georgia Cancer Specialists. While his Northeastern Jewish upbringing makes him far more likely to Hora than Haka, I still like his attitude.  And Marcie loved the fact that the first thing on which he focused during our 45 minute initial consult was my pain and what he could do to get me feeling better, as in immediately. He prescribed me some cool new meds (which Adele had recommended to me a week month earlier - props to her, and yes, that strikethrough is b/c she corrected me) which really have helped. I can now sit to work or, hopefully, fly on an airplane, two things that were out of the question 3 weeks ago. 

Today was my 10th and final (for now) radiation treatment on my pelvis. They gave me a certificate today, as if I had graduated from Radiation High and was now ready to enter into the College of Chemo. It was actually a nice gesture by the radio techs, who also gave me pointers on removing the blue tattoos that encircle my waistline. The techs use these lines like a pilot would landing lights, I guess. Good thing they never slipped off the runway. The last thing I need is any shrinking of any other parts down there! 


Warning - Bowel Movement Joke Ahead The promised radiation side effect of loose stools never really won out over the constipation-inducing Morphine. Guess I'll have to double up on the Metamucil (I'll take "Things I Never Thought I'd Hear Myself Say Before I Turned 70" for $200, Alex) . 

Barring any changes from our meeting in NYC, I'll start chemo next week. Anybody hanging out in Lawrenceville with 4 hours to kill, let me know. But you'll have to bring your own Hardy Boys books 'cuz I'm not sharing!

I'll try to use this space to keep friends and family posted on my progress. I'm happy to hear from all of you, especially if you have encouraging stories to share about others who've given the middle finger to the medical odds-makers. Or pictures of kittens, those are nice too.