For someone who is supposed to be resting to heal, I had a pretty active weekend. This summer, Pearl Jam released their tour dates around the same time the NFL released its schedule and the Bishop Eustace Class of 1993’s 20th reunion was being planned. As fate would have it, the NFL put the Cowboys-Eagles game squarely in the middle of a Saturday night reunion and Monday/Tuesday concert slate at the Wells Fargo Center. My first thought was, “Sign me up!!” but then I remembered I was on a relatively short leash with travel and excess activities. With the shows, reunion, and football game all the same weekend, though, it was a given to fly up for all four - it was almost an “unthought”. Known risks for travel and health being minimized/mitigated made the decision to come up an easy one – at least for me.
When I asked Jen what she thought, she was on board AFTER assuring her there would be an easy, even flow to the trip and not 72 hours of back to back to back shenanigans. I could have stayed home on our porch, watched the full yellow moon, and let the records play in relative health while listening to “Lightning Bolt”. But that would definitely not qualify as putting life into my years, so she gave me a reluctant blessing on making the trip up with my college friend Dave. As the pilate took off, though, even I wasn’t sure how well I could keep the promise of taking it easy. Once the sirens of an eventful weekend go off, it’s not easy to tune them out, especially considering what I have been through and what I got. Id impulses are hard to subdue sometimes.
My mother wasn’t thrilled; after all, the last time I came up for Pearl Jam (the final Spectrum shows), we kind of partied like an animal all weekend. “Why go put your body through this, it’s not for you right now,” she told me. “Use your brain!” Of Jay and mine’s plan to go on the field before the Cowboys-Eagles game (thanks Ari!!) she reluctantly understood how special of an opportunity it was for us. As we left for South Philly, though, she shook her head and muttered to her friend on the phone, “Off he goes again to these games and concerts, like he puts his recovery in the rearview mirror to have fun; it’s crazy, Mary!” I was going to reason with her like only an Italian son could, but decided instead to heed her “mind your manners when you talk to you mother” advice I have received many times before.
“The music you guys have created has plastered the wall of my adolescent and adult life. It’s really been the sound track of my life.” Steve Gleason, on Pearl Jam
Dose ten was Wednesday, and so far, so good. The “routine” was more crowded this week, with some extra appointments and obligations sprinkled in. Life slowly shifts a bit more towards normal, and if you didn’t know better, you might think I was just a regular guy food shopping, taking his kids to the park, going to church, etc… It is a nice feeling, being normal.
Ten doses. Thirty weeks. Four scans with three results. And in some striking symmetry, thirty blogs since asking “Is PD-1 The Answer?”. It is ironic that the weekend after my tenth dose, I am heading back to Philly. To see Pearl Jam. You know, the guys who debuted with “Ten” (supposedly named after the band’s favorite basketballer, Mookie Blaylock, and not my infusion count. Whatever.)
If you have been unaware of pink popping up all around you the last few weeks, you likely haven’t been to a supermarket, watched a football game, read philly.com, or opened up Facebook. The little pink ribbon has made its annual appearance, right on time with the leaves turning and the weather cooling. October is Breast Cancer Awareness month, and millions will be reminded to have their mammograms by the NFL’s pink socks, gloves, and penalty flags every Sunday. Many will participate in events supporting breast cancer awareness and research. But is the attention being generated each fall translating into lives saved?
When you look at the numbers, breast, prostate, and lung cancers are the heavyweights — responsible for over 40 percent of all cancer diagnoses in the United States last year. While the other two get their share of support, breast cancer awareness and the pink ribbon is by far the most visible of any awareness, education, and fund-raising campaign. (On a side note: The American Cancer Society publishes a Cancer Awareness Calendar that lists every possible cancer awareness activity, including some that are obscure and even goofy. I mean, "Take A Loved One To the Doctor Day"?? Shouldn’t that be EVERY day a loved one isn’t well? Anyways…)
However, there’s a major problem with the breast cancer campaign – really, two. First, it’s become as much a marketing tool as an awareness movement, at risk of desensitizing us to the cause it represents. Google “pinkwashing” and all sorts of results appear, but in short, it’s a cousin of “greenwashing” – both concepts tailoring their marketing strategies around public perception of assisting a worthy cause. Lurking below the delicate shade are (usually) profit-driven corporations with no governance on their use of all that pink, or what they donate from assumed increases in sales of pink-related items (often, there are caps or pre-determined amounts donated). Incredibly, some companies who splash pink in their marketing actually use cancer-causing agents in the very same products wrapped nice and neatly in that pretty pink bow — how hypocritical of them.
Our little routine for my infusion week is to hit yoga on back to back days. Tuesday is super-energetic class with Paige, after my blood draws and the doctor's consult. Wednesday is a more focused, mentally challenging (and calming) class with Paul, just prior to the infusion. Both get the mind cleared, the heart rate going, and, we hope/believe, prime my immune system to flush out these toxic cancer cells as PD-1 does its thing.
Normally, the background music gets lost in the shuffle of trying to figure out each pose. I have a difficult enough time keeping myself upright, without paying attention to the tunes. Near the end of an eventful class before infusion nine, though, a familiar melody popped up on The Yoga Joint’s playlist:
I hope that the days come easy and the moments pass slow,
After unsuccessfully lobbying for a change in scans from Friday to Thursday, we once again had a weekend to await results. The delay seemed to bother everyone but me; I was a little more concerned about figuring out how to use a lob wedge on Friday afternoon than pestering the Holy Cross staff for results. It wouldn’t have done much good anyways; the radiologist who reads the scans was away for his daughter’s wedding, so it was going to have to wait until Monday no matter how many calls or emails I sent. You would think the bride would be a little more thoughtful of us cancer patients on her big day…
The scans show stable disease; it shrank another 8% the last six weeks, so I am continuing to respond. Since I am now getting scans every six weeks, there will be less of the drastic change from scan to scan, like there was between the baseline first scan and scan two (a 46% drop). This scan was almost identical to the drop between scans two and three (both were rounded to an 8.6% decrease), so from weeks 13-26 in the study, I had an overall decrease of 17%.
Where does this leave us? My doctor was fairly upfront with us – I am likely going to live the rest of my life as a metastatic melanoma patient. While I harbor aspirations of one day getting the "No Evidence of Disease" label, there’s still nearly 12cm of measurable tumor in me. So there is a balance between extremely positive thinking and medical reality that we are learning to live with.
Sometimes, having cancer can be a good thing. It provides perspective, it strengthens, and it often gives a better appreciation for life, if you let it. Don’t get me wrong, it’s not like you all should run out and get melanoma to become more enlightened, but as a side benefit, it can really help frame life’s ups and downs. Everyday disappointments are a little easier to handle, major turmoil seems more bearable, and even tragedy is weathered with a greater sense of resolve and purpose.
I woke up the morning of September 11, 2001, almost a year removed from cancer surgery. The 11 months prior had been trying; the aftermath of a melanoma scare had taken a toll mentally and emotionally. I took my “beating cancer” as any “invincible” 25-year-old would — with the mindset that I was strong enough to overcome anything. Meanwhile, carpe diem ran off the rails, with wild emotional swings, late nights, and generally misplaced priorities. Sure, there were plenty of good stories along the way, but I lost a relationship, burnt several bridges, damaged many others, and missed many an opportunity to put my life on the right track while I was busy tending to my wants.
Then, like most Americans, life changed in a few hours. Unlike most Americans, I could walk a half a mile from my apartment in Hoboken and gaze out over the Hudson River at Lower Manhattan. That morning, I planned on taking the PATH train to the WTC stop with my girlfriend, grabbing a Christmas present scarf for Dad with a $25 credit at Century One (directly across from the North Tower), and then heading back to my office in Jersey City.
Infusion Eight down! We changed up the infusion schedule a little, so they will be on Wednesday afternoons going forward, which should bode well for getting blog posts up on Thursday (theoretically) and for giving us a little easier of a time balancing things. With Josie starting school and Tommy in a “Mommy and Me” class on Thursdays, it was much easier on everyone else to move it slightly earlier in the week. Plus, if there are plans that weekend (which, knowing us, there’s a good chance there is SOMETHING to do), it gives me one extra day to rest and recover.
So far, so good – not a ton of fatigue, and no other side effects. We are settling into a bit of a routine now, one that incorporates a few of our “get healthy” ideas. The weekend before the infusion (or the Monday of), it is food-shopping time, followed by cooking a couple meals for the week. This week, it was a healthy veggie soup that loads up on some immune system boosters – garlic, onion, ginger, cucumber, carrots, jalapeno, and cabbage. Add some potatoes and tomatoes, kamut, and a healthy dose of Old Bay for a little bit of flavor, and you have something to kick start the immune system in preparation for PD-1. A veggie curry made with similar ingredients gave us a couple of “base” meals for the week.
Jen and I also did yoga the hour before the infusion. There’s no direct link I have found between yoga and curing cancer, but there is plenty of evidence that it detoxifies, strengthens the body, gets the blood moving, and generally makes you a healthier person. As a bonus, the final few minutes are some of the most relaxing moments I get all week, and for whatever reason, I feel refreshed after nearly every session. Bringing that positive energy into the infusion center – which isn’t really an uplifting place, despite Holy Cross’ best efforts to incorporate sunlight, flowers, etc. — gives me a boost that can only help this treatment.
Remember all that talk about how the bout with shingles wasn’t really all that bad? Yea, about that… apparently, shingles doesn’t just go quietly. It pillaged and burned as it went through my central nervous system, and while on the outside the visible damage is nearly gone, under the hood, the story is a little different.
It’s called postherpetic neuralgia, it is the result of nerve damage done by the shingles virus, and it wasn’t pretty. One minute I was sitting there, holding a good friend’s ten-day old baby boy. The next thing I know, a searing pain shoots form somewhere in the back of my skull towards my right eye – to the area the shingles resided just a few short weeks ago. A pounding headache followed, and I saw stars, curled up on the sofa. The entire right side of my face went numb. My eye felt like it was burning from the inside out.
I would say it felt like a cattle prod, or maybe a Tazer, but since I haven’t been prodded or tazed, the only analogy I could come up with was “(willingly) getting an electrical charge from a 12 volt battery on Spring Break in Metamoros”, although that one is kinda hazy, too. It was a cross between a shooting pain and a sharp continuous throb, an oxymoronic clashing of “This consistently hurts, and is somehow getting intermittently worse.” The best way to describe it would be the personification of two live wires touching – again, and again, and again – for a full minute. Every new touch, the pain increased a little bit.