A Tale of T-shirts

A streak is ending this year. For the first time since 1994, I will not join tens of thousands of other runners for Peachtree Road Race on July 4th. That's 19 straight, 22 or 23 overall. The reward for all those hot and hilly 10K's is a collection of rarely worn t-shirts. Marcie, with help from some friends, is turning this collection into a quilt. Here's a small sample of what they have to work with:

This year, cancer has finally gotten the best of me. My breathing is challenged, and Peachtree is no place to test one's limits. I expected to be saddened by this forced retirement, but I'm not. I will surely miss the event: warming up with running pals David, Wes, Elizabeth and others, and seeing all the spectators lining the course, the kids holding signs cheering on their mom and dad, the 20-somethings drinking beer on decks. 

I'm actually grateful that it took 2 1/2 years to get to this point. I not only ran Peachtree twice since all this started, I also finished 4 half-marathons. In fact, other than the initial back pain that lead to my diagnosis, I haven't had any symptoms from the cancer itself until recently. I had side effects from the treatment, but if it weren't for the scans, I wouldn't have known the cancer was still there. 

I am hopeful that the new chemo treatment I started a couple weeks ago will improve things and allow me to get back to running. There are small signs after my first treatment. My breathing has improved. I'm not using the oxygen we'd had delivered to the house 3 weeks ago. And yesterday, I did my first exercise of any kind in many weeks - two sets of push ups, 22 in all. It's a start...

There's another T-shirt I'm starting to wear now. Dr Z used a certain pop-culture reference to describe me a couple weeks ago when we were talking about how fortunate I was to have gone this long without symptoms. Marcie and Josh picked up the corresponding shirt for me this week.

Do you like it?

By the way, retirement may not be forever. I hope to make a spectacular comeback next year. Good luck to those running Peachtree this year. See you soon!

Q: Where would Mr. Weinberg and Sheik Zayed Be Neighbors?

A: On the campus of Baltimore's Johns Hopkins Hospital, naturally. 

I walked the corridor between Mr. Weinberg's and the Sheik's respective buildings today, several times. I'm at Hopkins for what has now become a two-day visit. The initial purpose was to see if I qualify for any of the drug trials they have going on here. There are at least 3 possibilities, but my eligibility won't be known until later this week. 

While poking around, Dr. Browner (more on her later) noticed a good (actually, bad) amount of fluid in one of my lungs, which is consistent with the coughing and shortness of breath I've felt increasingly over the last two weeks. A CT confirmed it, and tomorrow I get to experience my first "lung tap," which is probably less fun than it sounds.

Dealing with the Hopkins Bureaucracy to arrange this visit was as painful as anything I’ve experienced in any mega-cancer-center. I received a call at noon last Thursday telling me I had 24 hours to provide any “missing records” from the medical history I had sent in over two weeks earlier. Failure to do so would result in my appointment being cancelled. I happened to be in Europe at the time, which they had no way of knowing. Still, I had to call to ask specifically what records were missing. The list included things as obscure as the surgery notes form a lung biopsy in early 2011. Not the biopsy results, which I had already sent, but the report that would read something like this:

Patient was lying unconscious. I inserted a needle and extracted 3 ml of fluid. Patient was then awakened and taken to recovery. See biopsy report for anything meaningful.

Marcie was able to find another 30 or 40 pages of stuff, scan it, and send it to me so I could forward it on to the folks who must live their lives by a checklist:

 ___ Rise from bed

 ___ Pee and/or Poop

 ___ Brush teeth

 ___ Make coffee

Lest you think I’m going to bash Hopkins, let me go back to Dr. Browner. I had an hour with her, at the end of which, she walked me out to the insurance desk, spoke to the clerk, and stayed there until we knew my CT scan was approved. Who does that?

And it turns out, we have a connection to her. One of Marcie’s best friends growing up was named Sheryl Goldstein. Dr. Browner is married to Cheryl’s brother.  She had already displayed her amazing level of care before we figured that out, so I don’t think it was one of those proverbial “I’m going to take extra-good care of my sister-in-law’s friend’s husband” things.

This post is dedicated, with much love, to Aunt Ilene and Uncle Eliot, who have opened up their home to me, fed me, laundered my clothes, driven me to and from Hopkins, and generally treated me like a lifelong member of the family, even though it’s only been 20 years (plus 4 days). I cannot thank you enough for all you have done for me and for my family!

The Return of Wine, and Other Silver Linings

Let's start with some good news. For the last few days I've been able to reintroduce wine to my daily diet, with no intense headaches. It's not that I've found some herbal preventive or some magical cure for a pounding frontal lobe. No, the reason is far simpler than that. I've stopped using Stivarga. It wasn't working.  I've talked with Dr. Z about what to do next, and we've decided to explore some clinical trials of some novel immune-system therapies.  We still have in our back pocket, as Dr. Z likes to say, a combination of chemotherapies I like to call the nuclear option. It's basically everything I've done before, delivered all at once every 14 days. Sounds like fun, right?

The clinical trials are for a class of drugs called anti-PD-1. I asked Dr. Z what "PD" meant and he claimed he couldn't recall. Naturally, I Googled it and learned that it stands for "Programmed Death." I'm not kidding. At least it's anti-Programmed Death, because a pro-Programmed Death drug probably wouldn't sell very well. I think the term refers to cell death, but I can't be certain.

More good news is that the trials will likely allow me to get to know some fine East Coast city far better  than I already do. That's because there are no relevant trials going on at Emory, so the best options are MSKCC in New York, Johns Hopkins in Baltimore, and maybe Vanderbilt in Nashville. There will likely be frequent visits, and possibly some extended stays. I'll know more over the next couple of weeks. 

But wait, there's even more good news! I don't have a hip injury, arthritis, or some other joint disease. No, the source of my increasing discomfort is... the cancer that we wiped out in my pelvis over two years ago. It's no longer active, but it left its swiss cheese-like mark on the left sacro-iliac region, per Dr. Hall, my new orthopedist. He thinks I can get some relief from physical therapy, but not just any PT will do. "Look, I own the PT clinic down the hall, and I can make money off you by sending you there," he told me today. "But I'm not. I'm sending you to another guy who does some weird stuff, like Mr Miyagi." 

The best part isn't that I may get to meet Pat Morita's double.  It's that this PT guy has a couple clients even more famous than me. In fact, they were mentioned in one of my recent posts. Want a hint?

That's right, the same hands that keep limber the extremities of the world's greatest metal band for those wicked guitar and drum solos will soon be helping me get back to my old self (fully capable of sitting in the car free of agony, able to jog short distances at an old man pace, etc.).

See, this post was full of good news, wasn't it?

Ever Been Buried Alive?

When you schedule a scan, be it a CT, MRI, Bone Scan, or PET, they always ask, "are you claustrophobic?" "Not me," I always say, with a verbal swagger.

Well, after yesterday, consider my swagger muted.

Yesterday began with an 7:00a MRI of my hip at Emory University Hospital. I've had fewer MRI's than each of the other aforementioned scan types, so I'd forgotten some of the details of the procedure, such as how long it takes, and how friggin' tight the hole is in that machine.

This picture gives you a feel for the contraption. It's about 4 feet deep, and to get a good view of my hip, I was slid in to the point where my upper lip was even with the outside edge of the machine.  My head was on two pillows, and I had on some bulky headphones to help drown out the noise from the magnets and motors buzzing around me.

I wasn't strapped down per se, but I did have the plastic plate pictured across my waist, and it was strapped to the table. They told me I was allowed to move my arms, but once I was inside, there wasn't room for me to do so.

Importantly, I also had a panic button in my right hand. After the first two Eagles tunes finished playing through the headphones (via the Pandora Classic Rock channel), I began to feel a little uncomfortable. An Aerosmith song later, I tightened my grip on the panic button. When a Don Henley solo track finished, I was in a full sweat, and my mind kept wandering back to the season finale of The Following, in which an FBI agent is buried alive.  SPOILER ALERT - she dies.

Finally, I hit the button. An angelic voice from the control room asked me if I was OK, and I replied in the negative. She explained to me that I was 1 minute into this particular scan and I had 4 minutes to go. I closed my eyes, swallowed for what I imagined might be the last time, and said I could make it 4 minutes.

She stayed with me, like a 911 operator, until the scan finished, and she rushed in to slide me out. "How much longer?" I asked. "15 minutes," she answered. I'd been in about 25. She let me stay out as long as I needed, bringing me a cold washcloth and some water to sip. We ditched the bulky headphones, repositioned the pillows, changed my arm position. Then she gave me the thing that anyone who's been buried alive would tell you they wish they had... an oxygen tube. I was able to use it as a mini-fan, blowing it on my face and neck for the next 15 minutes while we completed the scans in two 7 1/2 minute sessions.

Note to self -  next time you need an MRI, ask for the oxygen line before they slide you into the coffin.

Mister Eye

When Toyota made a 2 seat, mid engine coupe called the MR2, the car magazines began calling it Mister Two. So I've decided to call the scan I'm having on my hip tomorrow a Mister Eye.

Hopefully, Mister Eye will tell us what the source of my continued hip pain is. I will keep you posted.

I wanted to take a moment to talk about stem cell transplants. This is a procedure used as an extreme measure when certain types of cancer aren't responding to other therapies. It involves basically shutting down the immune system and rebuilding it from scratch with stem cells from a healthy donor. All of this takes place in a Travolta-esque bubble of a hospital room.

I have two friends, one who had stem cell treatment several months ago and one who is just starting. Bob just got the news all of us Members of the Club long to hear, "No evidence of disease." I hope I report the same for Mac before the maple leafs have fallen in his native Ontario.

When Living WIth Cancer Isn't All That Fun

You know I'm a fan of Living with cancer. Not only living with vs. dying from, but I mean truly Living, experiencing life to the fullest. That's why I wanted to take Marcie with me to Paris earlier this year, why I've wanted to run half-marathons at a pace I would have been embarrassed about not long ago, and why I've tried to be a better dad, more present, more involved.

Living with cancer has its downsides, too. It means not using cancer as a excuse when unpleasant things lie in your path. Case in point - I'm writing this from Room 686 at Piedmont Hospital, where my father has been a resident since last Wednesday. He'd fallen 3 times in a week, despite having his walker next to him. Turns out he has a condition called Congestive Heart Failure, which sounds much more imminently deadly than it is. In fact, he's had it for two years now, which was news to me. But that's a story for another day.

He's doing better and will leave here for a two to three week stay in a rehab facility to regain his strength. The unpleasant part is what comes next. The doctors have told him it's no longer safe for him to live on his own. He's 84 years old, has lived in his current house for 40 years and, understandably,  doesn't want to leave.

We've been building the case with him for the last 2 years, and even have him on the wait list at a nearby community that offers both independent and assisted living options. (Waiting lists in a place like that are a rather morbid concept when you think about it.) I want it to be his decision, his choice. But I have to be prepared to make the decision for him, for his own good. It's one of those child-becomes-the-parent situations, and it sucks. Fortunately, I have Marcie and my sister to help.

It can be a bit depressing, watching your parents age less than gracefully. And it's hit me pretty hard of late. But that's part of life, and part of the price I have to pay if I want to keep on Living.

Chemo Myths Debunked

I am the Great Debunker of Chemo Myths. I'm like the Amazing Randi of tumor treatments. Allow me to explain.

Myth #1 - Chemo Makes You Lose Weight

Not always. Since about my junior year of high school, I weighed between 170 and 175 lbs. I dipped down to about 160 after having a foot of colon removed when I was 38, but I quickly bounced back to my normal level, and stayed there until very recently. Last Fall, I began to add pounds, and inches, while on chemo. A couple months ago I topped out at 191. Some of that was probably the lack of exercise, not the chemo directly, but still.

I'm on my way back to my comfort zone, with the latest weigh-ins tallying somewhere in the low 180's.

Myth #2 - Chemo Make You Lose Your Hair

Certainly not all chemo causes hair loss. I never lost a lock during my first year and half of various treatments. And I was thinning in October, when I decided to take things into my own hands, literally, and shave off what was left. In retrospect, I probably could've gotten away with a good buzz cut. But that's not exactly the myth-busting part.

It's my eyelashes. Some of you know that what my genes lack in cancer-fighting ability, they more than made up for in long, thick lashes. But post chemo, something weird happened. My lashes are even longer. So much so that I now can't wear my glasses without my lashes feeling like a vertical windshield wiper, gliding along the inside of the lenses. I've had random people comment about my lashes a half dozen times in the last two weeks. I'm thinking about trimming them. I'll leave the ear and nose hair au natural, but I must manscape my mascara-less filamentous biomaterial.


I know, that's just two myths. Everything else you've heard about chemo is true. Or is it?

Feel free to post your own stories about chemo surprises, or ask me if I've ever experienced something you've heard about. See that way this can be a two way conversation.

PS - Shout out to my favorite members of the diplomatic corps. It was great to see you this weekend, sad reason notwithstanding.