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.