2013: The Year Cancer Kicked Back

Welcome to the oh so cliché Year in Review post. This is when good writers rehash some of their posts from the past year, essentially pulling off a long and hopefully entertaining column with relatively little effort. With that in mind, here we go...

The year began with some not-so-great news and some pretty good (Huey Lewis and the) News. We learned that the chemo routine I'd started in the fall wasn't doing much good. The cancer was still growing, albeit slowly. So, as Huey and I both said at the time, I want a new drug.

In February, I was nearly trapped in NYC, but pulled my best Snake Plisken and escaped.  We also decided on that new drug, Stivarga. It happened to be my most expensive oral drug to date, retailing for $11,000 a month. But it gave us some hope since it was a new approach to stopping the spread of my cancer.

March came in like a proverbial lion, with an ER visit that turned out to be a false alarm. Soon after, my hip and leg pain returned with a vengance. Scans confirmed that it was not a recurrence of cancer in my pelvis, which was of course my biggest fear. I finished off the month with an off topic post, explaining the Story of Passover, with a modern take.

Things were pretty quiet in my world in April, although I did debunk a couple of chemo-related myths, Amazing Randi style.

May brought a mixed bag of news. We learned Stivarga wasn't working - that's the bad part of the mix. The good part was meeting and becoming a patient of Metallica's personal Physical Therapist. Soon after, my pain diminished, and my guitar solos approached legendary status.

Things started getting a little dicey in June. During a trip to Johns Hopkins, we discovered what might have been a small clot in one of my lungs, and a whole bunch of fluid. The blog never really reflected it, but I started feeling pretty crappy and stayed that way for much of the summer. I had oxygen tanks with me 24/7, and generally started to look and feel like a terminal cancer patient. Spoiler alert - I got better.

By the end of July, I'd had another draining of the lungs, and had started on another new drug, Zaltrap. I started feeling better, and the scans showed why. No new growth. Had we finally found the magic bullet? Not really, as a magic bullet would reverse cancer's course, not just hold it at bay. But it was a step in the right direction.

I told the story of Sally (not her real name) in August. The story itself was inspiring, but it also inspired a whole bunch of people to try to guess Sally's real name. I had to point out that people at my kid's former school were barking up the wrong tree thinking it was a staff member there. The thing to remember from that story isn't Sally's true identity. It's the phrase "Bronze the Kayak!"

I spent much of September feeling like a lab rat. There's no better way to describe what it's like to participate in a drug trial, with its regimen of tests, dose administration, and scheduled bathroom breaks. We had high hopes for the trial, but my cancer became decidedly worse, and I dropped out of the trial. It was worth the risk, and I'm hoping to find a new trial again soon.

Most of the year, I was focussed on October 26th. That was the day of my twins' B'nai Mitzvah, and it was really important to me that I be in decent enough shape to enjoy their special day. It turned out perfectly. I was feeling good, they did a great job, and our friends and family had a great time too.

While I didn't post anything in November, I tried to explain in early December that I'd been in a pretty dark place, emotionally, much of the month. I'd lost a lot of weight, and I'd been having pain in my jaw that was pretty intense. Combined with all the routine side effects, I was pretty depressed. But I got some help working through it, and I've been feeling pretty good this month, physically and emotionally.

In December, I was reminded that I'm not in this alone. I wasn't referring to my supporters, as I hear from so many of you often in response to these posts and elsewhere. I meant that my treatment and my progress impacts my family just as much as it does me. My oldest son was upset to hear that I might be delaying treatment over the holidays, granting myself a six week break. He knew that it was during shorter breaks earlier in the year that things got worse, and he was scared. I talked to Dr. Z, scheduled what Marcie calls "chemo light," and made everyone happy, including myself.

The year ended with a tooth extraction, some reshaping of the exposed dead jawbone, and a soft food diet. Things could be worse...

Cancer took a few shots at me this year, and I was able to absorb its blows. I'm grateful for that, and for each of you reading this who keep me in your thoughts and prayers. I'm blessed with an amazing family. And lest I forget, Dr Z and his team, from the front desk folks to the techs, to the nurses, are the best there is. I'm in good hands.

Here's to 2014 - may it be a year of happiness, prosperity, and good heath for each of us!

Taking One for the Team (and for myself)

It's been a while since I live-blogged from the chemo room here in Johns Creek. I just thought it was a good time to catch everyone up on the latest. You may be wondering why I'm here when at last report I was headed for a nice long break from chemo. Well, that's where the title of this post comes in. 

I had been enjoying the break, I must say. And as a practical matter, my chemo always has to involve a Wednesday visit to Dr Z's. Either I start on Monday and have my take home pump removed on Wednesday or I start on Wednesday and d/c the pump on Friday. So with Christmas and New Year's days falling on Wednesday this year, it would have been January 6th before I could have had another treatment. 

Faithful readers will recall that the last couple of times I've had lengthy breaks, things didn't go too well. I ended up feeling crappy from cancer, as opposed to crappy from side effects. But the crappy from cancer is obviously a more serious matter. I had been conveniently ignoring this little fact while making my plans to go chemo-free from Thanksgiving until week 2 of January. 

It was the team, meaning my family, that reminded me. Our oldest confided in Marcie that he was worried I would get really sick again if I was off chemo that long. She shared his concern, and shared it with me. I began to wonder, was I being selfish by foregoing treatment voluntarily? Maybe not, after all even Dr. Z had admitted he'd pushed me about as far as he could without some kind of break after November. And lest we forget, I'm still dealing with the dreaded osteonecrosis in my jaw, the pain from which has subsided, leaving only the dead tooth and bone scheduled to be surgically removed December 30th. 

The truth is, for many of us chronic cancer patients, knowing when to treat and when to rest is at best difficult, and at worst, a Sophie's choice. Stay on treatment too long and you stop being able to do the things you want and need to do - being truly present with your family, working, enjoying time with friends. Take too long a break and your disease could progress to the point that a) the treatment needed is harsher, or  b) you no longer have viable treatment options. 

It didn't take me long to work out the decision this time. Adam and Marcie were right. Six weeks off would have been too long. So I'm here today, 3 weeks after my last treatment, then will have another 3 weeks until my next one. That's the best plan I could come up with - for my family and for me. 

-----

As we all look forward to time off from work and school, it is my hope that each of us is able to have some moments when we reflect on and perhaps connect with those most dear to us. 

Happy Holidays to all, and thank you for supporting me through another year of life's challenges. 

Of Side Effects and More

With the rain outside as my soundtrack on this steroid-induced sleepless night, it dawned on my that I went 0-for November in blog writing. It's not that I haven't had much to say; rather, I haven't known just how to say it, and as you'll learn, I wasn't always in good enough shape to write.

Lest you worry that my typing at 0-dark-thirty is disturbing my beloved or our offspring, I have banished myself to the recliner in the living room, a full story below those-who-can-sleep. I've had a cough (which is 50/50 side effect vs cancer) that makes it hard to sleep horizontally, so Marcie suggested the recliner, having remembered from her brief sojourn there several years ago that it was "surprisingly comfortable." Perhaps it's my 8 inch longer frame, but I've come to the conclusion that my SleepNumber is not "lumpy."

Side effects. I have been set upon by them like Auburn fans swarming the field after rolling the Tide. And for the record, while beating Alabama, including that miracle of a final play, was an example of great coaching, beating Georgia was pure dumb luck. Nothing wrong with a little luck en route to a championship, but let's call it what it was. 

Side effects. Let's start with a list, each of which was a part of my November:

The familiar:

Heartburn

Constipation, lasting several days, followed almost instantly by:

Diarrhea

Fatigue, in varying degrees, culminating in last weekend's couch-fest.  

Depression

The new:

Weight Loss - my fighting weight was always 175. I now need to eat a 16 lb. Pound Cake to get back there. 

Osteonecrosis of the Jaw - Those of us who took Latin and those of you who attended Med School already know what this is. For the undereducated rest of you, it means bone death. And it hurts, badly. In fact, in my list of most painful maladies I've experienced, in which 1/3 of the score is based on intensity of the pain, 1/3 on duration, and 1/3 on the coaches' poll, I'll put exposed dying bone in one's mouth a close number 2 to a middle of the night leg cramp. The cramps get the edge because once they start there's no pill you can take fast enough to head them off. At least with the osteonecrosis, since it last for days at a time, you can knock it down from an 8 to a 4 with narcotics. Just beware, the side effect from treating this side effect is constipation (see above).

UPDATE - awesome leg cramp scene from Cosby Show: https://www.youtube.com/watch?v=0_v1phYhU3I#t=110

Where does ONJ come from, and why the jaw? It turns out that one of the drugs I've been on for years, Xgeva, does lots of good in preventing the spread of bone metastases, but leaves one open to lots of bad in the jawbone. Xgeva, and many other drugs, work by slowing down the natural cycle of bone cell death and replenishment. And that's great if you're trying to cutoff the energy cancer cells would piggyback on to take hold in a new spot. For reasons unknown, over time, these drugs tend to over-collect in the jawbone, leaving it vulnerable if, say, the gum is eroded and the bone exposed. Tooth extraction can be the culprit, or in my case, even a routine root canal during which the gum is injured by an instrument or by the clamps around the tooth. Something that minor would almost always go unnoticed, but combine a slow healing process on the gum with a little Xgeva, and boom - bone starts dying. 

It's not any one or two of these side effects that has gotten to me these last few weeks - it's the combination of them. So Dr Z and I have agreed it's time for another break from chemotherapy. In fact, after we walked out of the exam room yesterday he turned to his staff in the hallway and said "I did this, I take full responsibility for Mr. Beskind feeling this crappy."

Maybe it was that admission, but I haven't needed a pain pill since, and I ate a proper meal last night. Actually, for the latter, I'll thank my friend Rebecca, whose response to us bailing out on her latke party at the last minute (due to my aforementioned couch fest) was to bring us the leftovers. Delicious and filling! 

Meanwhile, the rain softens outside my living room window. Perhaps sleep will soon follow. 

Perfect

This past Saturday, our twins celebrated their B'nai Mitzvahs. You probably know the phrases "Bar Mitzvah" and Bat Mitzvah." When there are two or more such celebrations, the plural is "B'nai." It marks the time in a Jewish child's life when they become responsible for following the rules as an adult. Technically, this happens automatically when a boy reaches age 13 or a girl age 12 according to the Hebrew calendar.

Explaining the Hebrew calendar is a topic for another day, or another website. Suffice it to say that it differs from the calendar in your iPhone and is the reason why Hanukah begins on Thanksgiving this year, but can coincide with Christmas in other years.

In the US, most Jewish families make an event out of the Bar Mitzvah. The child often learns to read and chant a passage from the Torah (Old Testament) in Hebrew, and may lead other aspects of a service - usually on the Sabbath. Family and friends are invited to the service, and it's common to have some sort of celebration, ranging from a simple lunch after the service, to something that rivals a high-end wedding.

OK, so that sets the scene. It's a big deal, for the kids and the rest of the family. The date was set over a year ago, and there's no moving it. In my darkest days last summer, I sometimes worried, "what if I can't be there?" Even if I were there, what if I were feeling crappy? So imagine me, every time in the last year or so upon the start of a new chemo routine, trying to project, "is October 26th following a chemo week or an off week?" As it turns out, I was due for chemo last week. Dr Z and I had talked about this many times, and until two weeks prior to the 26th, he had always said we could just shift the schedule by a week.

But suddenly, on Wednesday the 16th, Dr Z, brought up the idea that perhaps we'd do 2/3 of my normal routine, presumably lessening the side effects, but keeping on schedule. He was concerned because the last time I'd had a break from chemo the cancer had progressed. I accepted the possibility on the surface, but I was really quite scared.

A chemo treatment, any chemo treatment, is going to make you feel "off" to some extent, and of course could be much worse than that. The last thing I wanted on this very special day for my twins was to not be able to fully enjoy it. I've come to learn that feeling joy is all but impossible for me in the days following a treatment. I also didn't want Marcie and others to be worrying about me rather than focussing on the amazing job the kids were doing with their responsibilities.

So last Wednesday, I showed up at Dr Z's with no computer to entertain me, no lunch, and wearing a  shirt that would make accessing my port difficult. I prepared myself to fight with Dr Z. "You show me exactly how many more months I'm going to live if I do chemo today instead of a week from now" was to be my opening and closing argument.  I imagined delivering that line and strolling out of the exam room, leaving Dr Z, scratching his head.

But I didn't have to. "Your counts look good, let's just wait until next week," he said as he squatted onto the wheelie-stool they always have in exam rooms. We talked for quite a while about the kids preparations, who was coming in for the event, etc. It was at that moment, at 9:50 a.m. on October 23rd, that I knew a perfect weekend was possible.

On Saturday morning, the congregation began to fill, first with the "regulars" and soon after with our family and friends. With two classes worth of the twins' friends invited, the place was more crowded than on a typical Bar/Bat Mitzvah day. My daughter was up first, leading the service for removing the Torah scroll from the Ark. I handed the Torah to my son, a symbolic passing of the torch, if you will.

They each read a potion of that week's reading, as did my older son, their uncle, their teacher, and our Rabbi. When you read from the Torah, there's always somebody standing next to you to correct any mistakes. With all due respect, I couldn't help but chuckle once I realized that the only person who needed a correction was the Rabbi. Granted, he hadn't studied his assigned reading for a year like my kids had, but still. Funny.

We had all 3 grandparents, my sister, Marcie's aunt, several cousins, and some of our close friends involved in the service as well. It was wonderful to share that part of the experience with each of them.

The kids each gave speeches about the Torah portion they had read. My daughter put a tear in nearly every eye when she applied the lesson from the story to our family's lives. Her point was that when something bad happens, you can't ignore it, but you can't dwell on it either. "My dad has cancer," she said, "and he doesn't always feel good. But we make the best of it, like if my dad needs to nap, one of us will go upstairs and lay with him. Or if he doesn't feel like paying outside, we'll have a family poker night instead."

So many people came up to me after the service and remarked that they had never seen kids tackle so much of the service, and never with as much confidence as our twins. I couldn't have agreed more.

That evening, we had a party for the kids' friends plus our out-of town guests and in-town family. There's a cool venue in a nearby conference center that has a 6-lane bowling alley, pool tables, a Wii, and a lounge area well suited for adults to gather for conversation. The night was great. The kids were all well behaved, having a great time. And I was able to catch up with many of our friends and family.

I was feeling remarkably well for a guy 3 years into his cancer treatment. My voice was back to normal, my color was good, and I could feel joy. So much joy.

It was, indeed, perfect.

Hey Jealousy

First some good news in case you're not a Facebook pal 'o mine. I have been feeling much better this week, especially now that I'm more than a week removed from my return to chemo. My energy has returned, breathing is almost normal, and anyone wanting to make an accurate drawing of me can now use something other than "Ghost White" from the Crayola box to color me in.

All of this led me to don the gear this morning and to go for a...walk. It was 1.29 miles at an 18:01 pace. Sure, that's a far cry from the good ole days, when an 8:00 mile was a warm up and races were run at a mid 6:00 pace. No, not in high school. Actual data from the 2000's backs up my story.

Yes, I have the logs of every run I've done in the last 15 years, maybe more. Why? Because that's what Runners do. Joggers don't, and that's OK. Runners bought fancy watches to track distance and pace long before every phone sold had the ability to do the same via any number of apps. We keep up with how many miles we've run on each pair of shoes because we know that our favorite model is only good for x miles (300 in the case of the Asics Gel Kayano  line I've been wearing since about 1998.) We don't just go for a run - we have a plan: long, slow distance today, short run tomorrow, intervals at the track next Tuesday. We try to run something called negative splits, which are as painful as they sound, but for different reasons. We quietly sneak back into our houses after a 90 minute workout so as not to awaken our sleeping brood. We fly across the country so we can spend 24 hours running 200 miles down mountains and up hills as a part of a relay team.

As I've touched on many times before, I am a Runner.

At least I was. Today, as I walked back from Lakeside High, it hit me. A runner I didn't recognize was moving at a very decent clip down the hill on Briarcliff Road. I'd guess it was a 7:00 to 7:15 pace. As he passed, I began to wonder, "will I ever run like that again?" Perhaps, but it's far more likely that when I do get back to running, it won't look much like that at all. Running the Boston Marathon? It's hard to imagine I could qualify for the world's greatest race, let alone endure what would likely end up being a 6 hour torture test. Years ago, my friend PCF offered me a sponsor's exemption - maybe I should've taken her up on it.

So, yes, I'm a bit envious of dude-in-the-white-shirt, extending his stride in an attempt to let the hill do the work for him. Quick aside - as my pal B-Mock taught me in Oregon years ago, quick turnover, not a long stride, is the key to downhill running. White shirt - he's a runner. I hope he realizes that it's a gift to be able to push yourself to generate that runner's high.

Now before you start shaking your head and thinking I'm depressed by all of this, I assure you, I'm not. I'm resetting expectations so that I can have the joy of meeting or beating them one day. Maybe a 30 minute 5k in 2014 is an attainable goal. Maybe it will just be a 2 mile run without stopping. Who knows? My definition of "Runner" needs to evolve, to exclude pace and distance, and to focus instead on effort, accomplishment, camaraderie, and all the other intangibles on which we runners depend.

Dropped Out!

Yes, like Frenchy in Grease, I've missed my proverbial mid-terms. Time to go back to high school.

You stay in a drug trial as long as your disease doesn't progress. Well, guess what? Mine progressed a fair amount in the two weeks since I started the trial (plus the 4 prior that I was off all meds). Lesions in my lungs had grown, and my old friend, the pleural effusion, was back. The end result is that Dr. Z and I decided to pull the plug yesterday. We also drained 1.3 liters off the right lung yesterday (that's a total of 3.8 liters for all of 2013.) Today, I'm back at his office for a return to the last chemo. That was a tough one, but at least the disease showed very little progress over the time I was on the drug.

So now the short term goal is to stabilize things. And to be a good shape for A&J's B'nai Mitzvah next month. Attendees, don't worry. I've already reassigned my preferred task of lifting the Torah to a more able-bodied Congregant. Apparently, dropping a Torah isn't one of those sins you can get out of simply by waving your cancer card.

On a personal and unrelated-to-cancer note, I'm happy to say that after 40 years, Kittredge Court is once again Beskind-free. My dad's house sold on Monday - as is. Marcie and the kids did a ton of the work to get it emptied and presentable, as did my in-laws, Dara, Alexis, Vince, Kim, Scott, and Erin. Miriam had helped set up his new place a while back, and Danny made the referral to the buyer. If I've forgotten anyone, let's chock it up to chemo brain. It took a village to make this happen, and I can't tell you how much my dad and I appreciate all you villagers! You are the best!

PS - I hope to have a better excuse than "sorry, I have cancer" when it comes time to return the favor!

One Week In

Actually, today is Day 10 in trial-speak. I received my first dose last Tuesday, my final dose of week 1 on Monday, so now we're on Day 10. The trial itself remains uneventful. I've felt more fatigue than I had been, and that's probably attributable to the trial drug. Otherwise, I haven't had any of the things they appear to be looking out for - fevers, nausea, funky colors in my phlegm, etc. I'll start dosing again next Tuesday.

Dr Z. saw me yesterday and thinks I'm looking better - which is not exactly scientific proof that the drug is working, but it's better than him saying I looked like crap after the first week. My lungs sound clear to him as well. Despite that, I do still have a cough. It's not a productive one, just one of those coughs that happens when you open your mouth to speak and the words aren't ready to come out yet. My words have stage fright, so they send a little cough out first to make sure it's OK.

This is not to say that all is rosy in my world. The 4 weeks off of treatment between my last chemo and my first trial appears to have given the cancer a little breathing room (pun intended) and it has begun to explore around my chest. The result is some pain when I have the aforementioned coughs, along with any sneezes, belches, and even the where-the-hell-did-that-come-from gasps that occasionally surprise me and anyone within earshot. The good news is the pain isn't constant - it's just a quick stab then it's gone.

The bad news is it's pain. Pain is what I fear most about this journey. I can handle nausea, diarrhea, fatigue, sleeplessness. night sweats, etc. In fact I have handled all of those, sometimes in combination. There are meds to ward off the pain, and I'm not trying to be a hero by avoiding them. But there is a balance between diving into a narcotic haze and being 100% alert at all times. I'm still working full time, and I owe it to my employer and myself to function as close to capacity as I can. I also prefer to be alert during family time, for obvious reasons.

So I try to limit my pain med intake to something less than the max dosage allowed on the bottle. Maybe one every 8 hours instead of 4-6. Sure, there are days when I might be watching the clock creep ever so slowly toward the 4 hour mark, but thankfully those days are rare.

We're hoping the new drug will start to have some effect on the cancer cells relatively soon, and some of these painful spots will go back to being unheard from. Until then, the pharmacy remains open...

Live from Drug Trial Central!

Algernon. That's the only well-known lab rat I can think of. Well, Algernon and now, me.

They treat me better than the typical lab rat. While I was required to be here from 6a to 6p today, I was allowed to leave during the two hour windows between blood draws. Speaking of which, there were 6 times today, each requiring between two and five vials of red and white cell cocktails. They say that's less than half of what you would give when you donate blood.

I've also had two sets of EKG's done, 7 hours apart.

My friend David stopped by this morning. Our conversations haven't changed much after 35 years. Insert "wife" for "girlfriend" and "kids" for "cars" and it's pretty much the same thing, only without an Atari controller in our hands to keep us busy between quips. He and Danny have been my most frequent companions during these long days at the Doc's office, and I really do appreciate the company. I guess my hair's not grown back as much as I thought because nobody here at the Northside office asked if we were brothers.

So here's the plan. Tomorrow I come back for more blood work around 6:30a, and I'll have to hang around for an hour or so after dosing. I continue to take the medicine daily for a total of 7 days. Then I come back next Tuesday for a bit. The whole cycle repeats in week 3, and somewhere in there I'll have CT Scans to start determining if this new drug is working for me.

Day one was uneventful, which is exactly what I was hoping for. All the other patients are gone now, and in another 90 minutes, I will be too.

Trials and Trepidations

Tomorrow, I enter the world of clinical trials. It's a dark and murky world, where drugs that worked in mice, rats, and other vermin are put to the test in humans. I will likely be placed in one of two trials that Georgia Cancer Specialists is doing. One is a drug that is meant to block a couple of receptors, which you can think of as little antennae sitting on the edge of a cancer cell, pulling in signals. The other is designed to screw up the communication layer between these receptors and the nucleus. Both are supposed to have the effect of preventing the "divide now" signal from reaching the nucleus, meaning the cell will eventually die. These are considered targeted therapies, because they are meant to attack only the cancer cells, and to leave the rest of my body alone.

These trials have very formal protocols. They start with baseline testing, so tomorrow will include yet another CT, blood work, and an EKG. Once the trial actually starts, there will be certain days each week on which I must spend up to 12 hours being monitored in the office, and certain days when I will have to come back for blood work - much more frequently than I would on my previous chemo treatments. In exchange, I'll know more about the progress of my cancer in real time than I have in the past. The expected side effects are pretty minimal with both drugs, although there's a paragraph written by the drug company lawyers that reminds me that just because the rats didn't grow a third ear as a result of the drug, doesn't mean that I won't.

I am excited at the possibility, small as it may be, that one of these drugs will be the key to reversing the progress of my cancer. We know that my last chemotherapy was able to stabilize things, so that's our fall-back if the trial doesn't work. I'm a little concerned about how long I will have been off chemo if that does happen, but the upside is worth the risk to me.

Picture me stepping onto the threshold of the perfectly good airplane, with a drug trial of a parachute strapped to my back. 3...2...1...

Stable to Improving

My official Scan Results Day isn't until tomorrow, but Dr. Z leaked the story tonight. "Stable to improving" was the headline. That's right, despite my intuition to the contrary, things inside are looking up. And that's not the only reason that today was a very good day. 

I also had a little surgery today. Next door neighbor Keith did the honors, removing a lump from under my underarm. It's not uncommon for colon cancer to deposit itself just under the skin, although biopsy results are still pending. But the surgery went well, and it removed a very annoying and constant reminder of the disease I've been battling for 3 years now, 9 if you go all the way back to my initial diagnosis. 

Muchos gracias to my taxi drivers Danny and David who brought me to and fro, respectively. 

Stable to improving = Music to my ears

Bronze the Kayak!

Marcie had lunch recently with her friend Sally (not her real name), who had been diagnosed with breast cancer a week earlier. Her story is worth repeating.

Sally had been on vacation with friends at a lake in the Northeast. On an otherwise peaceful morning, one of Sally's more energetic friends invited her to go kayaking. Not wanting to mix vacationing with exercise, Sally politely declined. Her friend eventually wore Sally down, and the two of them did, in fact, paddle away for a few hours.

A couple of days later, Sally was feeling that pain with which most of us of a certain age are all too familiar - the you-haven't-used-those-muscles-in-a-very-long-time pain. In this case, it was the shoulders that were throbbing. In search of relief, Sally rubbed away at her upper arm, shoulder and neck, and then as her hand slid down to just below her collar bone, she felt something odd below her skin - a bump that hadn't been there before.

Not one to mess around, Sally immediately scheduled herself for an exam at the new Women's Center at the nearby hospital. After a mammogram and an ultrasound, Sally heard the news so many women dread. There are two suspicious lumps, and they need to be biopsied. It would be a week before the biopsies could be performed, Sally was told. She knew that wait would be agonizing. "Is there any chance of getting in sooner?" she asked. The nurse went off to look at the schedule and came back a few minutes later. "We had a cancellation. How about right now?"

As you know from the introduction, the news was not good. Sally's doctor told her she needed to meet with a surgeon, and as of this writing that meeting is still pending. But this is not the end of this chapter in Sally's story.

Sally did as many of us do between diagnosis and that first meeting with the oncologist or surgeon. She hit the internet. Anxiety ensued. She talked to a number of people, including one friend who happens to be a literary agent. One of that agent's clients is Geralyn Lucas, the author of Why I Wore Lipstick to My Mastectomy, a terrific book that became an Emmy-nominated Lifetime movie. Geralyn ended up calling Sally.

"You are an amazing woman!" Geralyn told Sally. "You just saved your own life." Sally hadn't stopped to consider that. "But what about my friend? Sally asked. "She's been through a really hard time, and I'm afraid this news will be really hard for her to take."

"Bronze the Kayak, call your friend and thank her!" was Geralyn's reply. "I give speeches all over the world, and I can't tell you how many people tell me they wish they had done exactly what you did."

Sally got it. Yes, it was dumb luck and an overly-energetic friend that lead to her discovering the bump on her chest. But it was her own response - not ignoring or putting off the testing she needed - that has given her the best chance of survival. Sally's fight is just beginning, but she's already evangelizing the lessons she has learned. She's planning to talk about her experience this week in a staff meeting at her workplace, which is 95% women, mostly in their 20's to 50's, exactly the group that needs to be reminded to self-examine and to pursue anything that's not normal.

You go Sally (not your real name)! You've already done more to help others than most of us will ever do. Now it's time to focus on you... and your bronzed kayak.

Zero Growth - It's Not Just for Economies Anymore!

I hate Scan Results Day.

So does Marcie. 

It's nerve-racking. 

We've had good SRD's and bad SRD's. Today was a good one! Dr Z says the scans confirmed what he thought all along these last several weeks - that my lungs were better. In this case, better means free of fluid, and with no new lesions and no growth of the ones that have been there. In oncology terms, that's a win. 

In fact, Dr Z says "we've definitely changed the natural course of the disease in your body." That sounded very profound, so I thought I'd repeat it here for you and let you ponder what the hell he meant by that, just as I did. 

The plan is to do two more rounds of the current regimen, scan again, then, assuming all's still well, drop the 1/3 of the cocktail that gives me the worst side effects. That's the light at the end of the tunnel I needed in order to get through more of these treatments. 

The other good news is that he feels I'm now healthy enough to apply for the drug trials I've talked about before. For some crazy reason, the drug companies would rather test on the current me than the me from early June who just had 3 liters of malignant fluid drained from his pleural space. So we'll see what we can come up with at Hopkins, Memorial Sloan Kettering, Dana Farber, or MD Anderson. Let's hope somebody out there will pick me! 

---

I received some sad news over the weekend. One of my mother's first friends when she moved to Atlanta in the early 1960's was named Sarah. Her older daughter, Marlene, was diagnosed with breast cancer in her 20's. She has been battling ever since - for over 25 years! She passed away on Saturday. I didn't know her at all, but was friendly with her younger sister in high school. I always held Marlene as an example of why the statistics don't dictate the results. I'm sure that circa 1990 life expectancy for a 20-something with breast cancer was measured in months, not decades. But for Marlene, those numbers were meaningless. 

I'm doing everything I can to make sure the stats they quoted to me back when all this started are just as irrelevant. 

May her memory serve as a blessing. 

Walk a Mile in My Shoes

When you're facing some particular adversity which you can't quite explain, the trite phrase "walk a mile in my shoes" is an invitation to others to experience what you are up against first hand. It's a phrase that's been on my mind lately. 

Why? 

Because Dr. Z feels the chemo I'm now on is working well. Because I'm no longer using the oxygen tanks that stand in the corner of my bedroom, looking like tiny ICBM's from a Cold War long since ended. Because I haven't taken a pain pill in weeks, thanks in large part to Bobby, physical therapist to stars like James Hatfield and me. Because today I literally walked a mile in my own shoes, including a couple of one minute jogs in the middle of that 20 minute walk. I had not done that in a very long time.

So all of that is good, why the invitation? 

Because despite all those positives, I haven't been myself lately. For a good two or three weeks, I was in a funk, and not just on the days right after chemo. I can logically say to myself, "look at all these good things in your life," but my brain responded, "meh." Given the option, I'd rather be doing relatively well physically and struggling emotionally, but the real goal is to make this an "and" not an "or."

So I started talking to people who can help, listening to feedback from Marcie, exercising a little, and generally trying to get right. I'm better today than I was a few days ago, and hoping to be better still before episode 3 of Zaltrap and Friends this Wednesday. It helps to hear from friends near and far. There's a core group I know will call or text on a fairly predictable schedule. Trust me, folks, those check-ins mean a lot. Some of you reading this don't know me personally, but take that advice when it comes to dealing with people you do know facing cancer or some other situation that may take months or years to resolve. Let them know you care how they are doing. That does more good than a whole bottle of narcotics. Well, you knew what I meant. 

I hope you never do walk a mile in my shoes. First of all they're probably bigger than yours and they smell funky. But I'd welcome anyone to walk alongside me, even if you can't quite keep up with the middle-aged guy with cancer. 

 

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.

Why We Celebrate Passover - A Modern Take

This off-topic essay is my response to a request from my cousin Shelley.  

We were slaves in the land of Egypt. Our ancestors must’ve been a lot better at manual labor than we are today. Why else would the Pharaohs make them build pyramids?   After years of dreaming of having the freedom to become accountants, doctors, and lawyers, the Jews were fed up. Moses, their leader, went to the Pharaoh and asked him to let his fellow-steins go.

The Pharaoh, in his best Yul Brynner impression, raised one eyebrow towards his bald head and said “No.”

Moses told him he’d be sorry. G-d sent plagues to Egypt. The first was blood.

“No,” said Pharaoh.

Then came fire.

“Goodness gracious, great balls of fire! But still, no”

Locusts, hail, and a few others nobody likes to talk about followed.

The last one was the Death of the First Born. The angel of death flew around Egypt, passing over (get it?) the houses of the Jews, but entering the houses of the Egyptians to slay their oldest child.

Finally after his own son died, Pharaoh said, “don’t let the door hit you in the ptolyme (which is Egyptian for ‘ass’).”

So we left, crossed the Red Sea, hung out in the desert and ate food like it was Manna from Heaven, which it was, until we made it to Israel, 40 years later. Apparently, not one Jewish man had been willing to stop and ask for directions.