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