It seems as though every time I get one of those exciting moments of doing something normal, I end up back in the hospital. First, there was the tonsillectomy after a weekend of hanging out listening to island music. Then, shingles followed lobster-diving with Fred in July. Now, a few days after pulling off the Weekend Warrior show, I headed back to the ER with some serious cramping in my stomach and an afternoon spent regurgitating leftover turkey soup.
Initial x-rays showed that I had a swollen bowel, which means there is probably some sort of obstruction. With my CT scans done four weeks ago showing nothing, the likelihood is that this isn’t cancer-related. The ER doctor stated this can happen, with the scar tissue from the two abdominal surgeries. According to her, there was nothing I could have done to prevent it, which got me off the hook for last weekend’s lapse in diet and increase in activity. The colorectal surgeon agreed with her, and has already started me back on liquids. We just need whatever is still sitting in the swollen bowel to, er, “pass through” and make sure I can keep food down, and I’ll be out of here.
Besides screwing up weekend plans (we had a quick trip to Orlando for a law seminar for Jen), just being in here kind of sucks. The glacial speed at which things move in a hospital can be frustrating, especially when the plan is “just wait and see if it clears by taking x-rays every day.” Not exactly the definitive course of action I was looking for. I was “NPO” until this morning, which somehow stand for “nothing by mouth” (it’s a Latin translation) – no food, no water, nothing. I understood this in certain circumstances, especially when surgery is an imminent possibility, but that doesn’t seem to be where I am headed (thank God).
A dozen infusions into this PD-1 whirlwind, and life is both slightly more normal and so much different than before. Adjusting to all the things I “need” to do has been challenging enough; this just counts the medical stuff – infusions, scans, colostomy, and letting myself heal.
The laundry list of “optional necessities” is more daunting – diet/food prep, supplements, yoga, exercise, acupuncture, rest, etc. (That last one may be the one we struggle with the most, the fine line between taking it easy and being inactive and absent.)
Of course, when you and your spouse have the same socially active personality, this line gets pushed. No one was really surprised when our Thanksgiving plans spanned 10 days and included a trip to NJ, Thanksgiving here, and then a “small group” of 50 or so friends (and 25 kids) over for the Florida-Florida State game and our annual flag football game in the park. Oh yea, infusion 12 was the day before Thanksgiving, too. One friend told me just hearing the list of events made him tired; I know it drives my mother nuts when we schedule ourselves out like this.
The holidays are here – the perfect combination of colder weather, increased stress, and overdone school parties. Nothing like adding a little cancer treatment to the most wonderful time of the year, right? This year, though, the holidays are shaping up to be different. For the first 36 years, they had been the typical combination of pumpkins, turkeys, mistletoe, and Seven Fishes Christmas Eve dinner. Sure, we had some variance (the South Florida Seven Fishes may be non-traditional, but they were darn good), but each year followed the Norman Rockwell outline to some extent — except for 2012.
Last year was the best and worst of everything the holidays could be. Take out half a lung for Halloween? Why not? It’s not like losing 25 percent lung capacity interfered with my distance running. Enema for a colon exam on the day before Thanksgiving? Um, sure. That is nothing compared to colostomy surgery the following week. Or the beat-up feeling through all of December, cumulating with the port placement right after New Year’s. The 2012 holidays, from a physical standpoint, were a pretty lousy string of “Can you top this?” medical procedures.
It was also the best the year of holidays, too. Jen and I had both our families converge on Indian Rocks Beach for Thanksgiving; our four parents, five siblings/spouses, one set of “in-law” parents, one grandparent, and six kiddies running around. Christmastime featured neighbors bringing meals and decorating the house and a bayside holiday boat parade. Friends sent so many presents for our kids, we had to save some of them for Josie’s birthday - there was no more room under and around the tree. My sister-in-law busted out the “Best of Kelli’s Kitchen” for Christmas Eve (and Thanksgiving); we’re trying to get her over here this year to cater us on the East Coast! New Year’s brought friends down from New York and a sunset view of the Gulf of Mexico. Everything the holidays should be came together in 2012, despite (or maybe because of) the circumstances.
This week kinda sucked, and it had nothing to do directly with my melanoma. On consecutive days, we were given reminders of how mortality can come at any time.
First, my in-in-laws (or whatever you would call “my brother and his wife/in-laws”) dealt with the arraignment of an off-duty Deptford cop who “allegedly” shot and killed their son – my brother-in-law-in-law, I guess. His death happened just before my TIL trial started in January, and gave our entire family an additional layer of emotional stress as the legal proceedings slowly developed over the course of 2013. The arraignment was a step forward, but re-opened a wound that never healed.
Tuesday, our babysitter’s grandmother passed away; she got the phone call while watching Tommy, and decided to stay the whole day anyway. As she put it, the little guy was a “good distraction” and even was wiping her tears away. A toddler is a great diversion from reality, but only for so long before it sinks back in.
There’s helping your favorite charity, then there’s inspiring a game-changing foundation that is saving lives. Tuesday night in Manhattan, I experienced a lot of each while attending the Melanoma Research Alliance’s benefit dinner and auction fundraiser at Sotheby’s. Jeff Rowbottom, an MRA board member and melanoma survivor, invited me up to the event to meet some of the people associated with the MRA, and the night and the organization were certainly more impactful than I imagined.
The MRA was founded by Debra and Leon Black in 2007, after Debra’s scare with Stage II melanoma. The organization’s mission is to accelerate the pace of scientific discovery and its translation in order to eliminate suffering and death due to melanoma. They fulfill this mission by funding research and insisting that researchers collaborate and share their findings with other scientists in the alliance.
lBeing in that room was sort of a 360 degree view on the lifecycle of a cancer treatment. The cycle starts with the donors – they contribute funds to make research happen, and they certainly showed up Tuesday night. Life-long melanoma researchers like Dr. Jeff Weber (my oncologist from the first trial at Moffitt) initiate new concepts in cancer research, and the next generation of oncology experts like Dr. Michael Postow of Sloan-Kittering and Dr. Todd Ridky of UPenn lead trials being funded by grants from the MRA (see, an advantage of inviting me places; you sit at my table, you get a mention in the blog!) The MRA itself employs a leadership team to keep things running and ensuring that every dollar raised goes directly to melanoma research - the Blacks underwrite the entire operating budget of the organization.
Being the ADD-scheduler I am, it drove me a little nuts that my scans and infusions were off by a week. “Wouldn’t it be great”, I thought, “if I could get them to be on the SAME week?” Technically, it would be the same week every other dose, as the scans are every six weeks and the infusions every three. I casually mentioned moving the scans to the trial coordinator, and lo and behold, they have quite a bit of latitude scheduling them! Since I was booking them the first day that I could (a Friday), they just figured I wanted to keep them every sixth Friday.
Turns out, the trial protocol allows you to move the scans back a few days. Since they always fell on the Friday before an infusion, it made sense to push the scans back to the infusion week. Voila, we’re making less trips to the hospital, with the added bonus of not having to wait over the weekend to get results — or so we thought.
Apparently, the radiologist who reads my scans has a knack for being out of the office when I get them done. Several previous scan results had been delayed because of his unavailability, and while I understand they want consistency in the readings, there has to be a backup plan. What if this guy gets hit by a bus (God forbid!), or decides he would rather be surrounded by sunshine and neon rays on Duval Street than x-rays at Holy Cross? At the very least, if being read by the same person was such a high priority, you would think that SOMEONE would, you know, make sure this guy is going to be at work that day.
I have a big week coming up — scans, infusion, and a meeting with the colorectal surgeon to see what to do about this colostomy. For the first time, I am a little nervous. (OK, maybe not for the first time…) I also had a back MRI thrown in there because, hey, what’s one more test, right? (One more loud, four-hour-long test!) Thankfully it came back negative for any trace of cancerous activity in my back and spine. I’m glad the doctors are being cautious, but lower back pain isn’t exactly a rare occurrence in middle age men with portly little toddlers (and Tommy is a 27 lb. bowling ball of energy who wants to be held quite a bit). I attribute the back pain to more activity, and muscle immobility, over the last year.
Mentally, I have felt more up and down the last few weeks. For someone who has focused on staying grounded and levelheaded, I had quite a few fluctuations in emotion the last month or so. There were the “fun” things, like the trip home for Pearl Jam, but also smaller, subtler things that gave me a bit of a boost.
I went jogging for the first time in a while the other day, a year after my lung surgery. Three miles, and while they were three SLOW miles, I was determined to finish and NOT stop for a break. It got me pretty pumped; I’m not a runner by any stretch, and seeing how far I came in the last year gave a huge sense of accomplishment. Heck, it’s the first time I ever got emotional during a workout. I got back home and immediately looked up local Tough Mudder and sprint triathalons coming up – and then nearly passed out from the run. I suppose I have a ways to go before I am ready to get back out there.
After asking the question, “Are Mammograms really saving lives?” two weeks ago, I got some very good follow up. It seems like there were two major ideas:
- The science behind mammograms can be questioned, but there are also very strong reasons to get one
- Breast Cancer Awareness has certainly turned a few people different shades of pink than intended with overexposure.
I am lucky enough to be in contact with several medical experts, so I asked two of them to contribute to a follow-up post on these subjects.
Brian Wojciechowski, M.D. is a physician and medical advisor for breastcancer.org. Maciej Ferenc DO, FACOEP, ABAARM, is a board-certified academy of anti-aging doctor.