With the unexpected funeral trip this coming weekend, there was some last minute travel and medical appointments to juggle. Originally, there was just an infusion scheduled for Wednesday. (We found out last week there was one more scan before switching to 12 week intervals.) But, to give myself a little more recovery time, it became one busy morning here at Holy Cross – scans early, followed by the oncologist checkup, and then dose #15.
The scans were great, outside of the barium – no results yet, just to be clear! I was in and out in an hour, which is a new Holy Cross record. Maybe the radiology team heard I was coming and didn’t want to catch hell again for delays? Either way, we breezed through the CT scan and oncologist appointment and were at the infusion center early for the first time ever.
Of course, Quest didn’t get the bloodwork done from the day before, so we had to wait for the labs to come back. It gave Jen and I a little time to discuss fun stuff in the cancer center, like where to send Josie to school or what Plan C would look like if it were needed. We get a lot of planning done there, which is good, if not exactly romantic. They even had a lady coming around giving neck massages, which I found out only happens on Tuesday and may alter the infusion day going forward. I try not to play the cancer thing up very often, but if it will get my back or neck rubbed, here’s my “C Card.”
Some of you may remember all that talk in previous blogs about slowing down and giving myself time to rest. It was great in theory, but as they say, the road to hell is paved with good intentions. I am recognizing there is not much I can change about how I am wired, and everything since Saturday has sort of proven that.
My first unrealistic expectation is doing one blog post a day this week. In my mind, I am forcing myself to write quickly about the many things that did or will transpire. In reality, I am likely putting undue pressure on myself. There is a lot to tell, and rather than jam it all into one overly wordy post, this will get divided into an overly wordy summary post today and some overly wordy details later this week.
The craziness started on Saturday morning. The Melanoma Research Foundation asked me to come to speak to melanoma patients and caregivers, and then be on a panel discussing the difference between what doctors say and what patients hear, and vice versa. Who would think telling a room full of strangers about my melanoma would be the least serious thing all day?? (Side note/plug: They have two more sessions coming up in San Francisco on February 1st, and, much more locally, in NYC on February 8th. If you have, take care of, or know someone with melanoma, register and go – it’s a lot of information about treatment options and clinical trials).
A little over a week ago, there was a bit of an uproar in the cancer community. Bill Keller, an Op-Ed columnist for (and former executive editor of) The New York Times, took a good hard look at the work of Lisa Bonchek Adams. Ms. Adams has blogged and extensively tweeted (165,000 tweets!) about her ongoing battle with breast cancer. Mr. Keller and his wife Emma both wrote articles examining and questioning the manner in which Lisa Adams has publicly handled her worsening condition. They also compared it to the passing of Emma’s father, portrayed as a quiet, private, peaceful end of life.
Two converging points became salient during the course of reading these articles (Emma Keller’s has since been removed) and others that reported the forceful reaction, mostly negative, to the Times piece. First, the manner in which Americans handle premature end-of-life is portrayed as much more clinical and hospital-antiseptic than our British counterparts. Put aside for a minute Mr. Keller’s absurdly small sample size and mistaken assumptions that all cancer patients live out their final days kicking and screaming in the oncology ward for a miracle treatment to lengthen life. Does our culture spend inordinate resources extending life by an indeterminate length, especially if those days are mostly spent incapacitated or otherwise without contribution to family and society? You know what – hold that thought for a future blog.
More relevant for many of us is the manner in which illness is handled publicly – serious, chronic, and terminal included. My personal stance on this may seem pretty obvious, but it is not as simple as posting blog entries or Facebook status updates. There are real mental and emotional barriers to putting yourself “out there” that even the most open of us face — not to mention how to handle the numerous modes of communication available today.
So the good thing about tumor regression is that, well, I get to stay alive awhile longer. The silver lining? That means I have to live – and life isn’t always the fun Keys trips and family times I tend to share. Sometimes, that means being a Dad, and a husband – roles I am plenty qualified to handle (well…), but can certainly present a challenge. Like Friday morning.
I’m typing this from the passenger seat of Jen’s SUV, while Tommy snoozes in his car seat. Before you call DYFS, it’s a temperate 71 degrees an hour before sunrise, and the windows are cracked. Faced with the decision of bringing this nocturnal beast back inside and risk waking him, or letting him (and, hopefully, Jen and Josie) continue to sleep, I grabbed my laptop, a Lara Bar, and some water, and have camped out until he begins to stir.
After failing to take a nap for the first time ever, Tommy crashed by 7pm last night – which meant he was awake before last call. And he’s been awake ever since. Jen tried all the normal tricks, but between being awake, recovering from being sick, and in the final phases of weaning off nursing, he wasn’t heading back to bed for her. One drawback of our parenting style of bringing the kids places and letting them adjust is that a “sleep schedule” is something we never really implemented. In the Sharpe house, bedtimes are guidelines based on the day’s progression and the evening’s activities. That means some nights (and subsequent following mornings) are earlier than others; it also means we get to deal with this on occasion.
Sometimes, this is just a blog. Nothing helpful, no specific cancer tips or tumor measurements or pictures from a hospital (and seriously, everyone has seen enough of me sitting there with an IV in my arm). Every now and then, I just share what is happening in my life. This is one of those posts.
We spent a quiet New Year’s at the beach with some other kids and parents; Josie was getting over being sick, and Tommy was just coming down with something, so for the second year in a row, no Sharpe made it to midnight. We got an invite to head to the Keys this past weekend, and went back and forth on if we should bring a recovering toddler. After a generous amount of debate, we ended up packing the car and heading south to Big Pine Key and the Blumberg Fishing Camp – our friend Kal and Anita’s place at mile marker 32.
For those of you who know me, I’m a huge fan of the Florida Keys. It’s one of the reasons I moved to Florida in the first place, and since landing here, I have only grown to appreciate the 120 miles of islands dividing the Gulf of Mexico from the Atlantic Ocean. There have been many memorable trips to Key West, but there are also a lot of other places to stop – and stay – along the way that are just as fun and relaxing.
One year ago, I made my 2013 resolutions. It was only my fourth post, and I really had no idea how the blog, and 2013, was going to unfold. For those who don’t want to click the link (it was a pretty decent post, for a rookie), my resolutions boiled down to two things – get through treatments, and beat melanoma. So, here’s the scorecard:
I got through chemo without roadblocks, but only made it to day 3 of IL-2 (the goal was day 4), although I think I could have made it through another couple of doses, so we’ll give a win and a draw. Then, the next ones were recovery and return to non-abnormal conditions; these are a little tougher to grade, as they are not really measureable goals. I am certainly getting better and back to “more normal” – a couple more draws? Remission of tumors was also mentioned, which is another partial win. These ties kinda suck, but at least in this case, they are a heck of a lot better than losses.
Then there were the last two resolutions I made at the beginning of this year — helping others undergoing similar challenges, and getting back to being Daddy. It seems as though these 70 posts have gotten a really positive reception, and I am very humbled by the sheer number of people who follow along with interest (especially during scan weeks) and care. There is always more I wish I could have done for people – that will be part of the 2014 resolutions – but feel like I exceeded every expectation I had when I started blogging about this a year ago.
The scan results are in from the North Pole — er, I mean, Holy Cross. I am still stable – very minor tumor shrinkage since the last scan (6%). The turnaround was quick this time; if these scan results got dragged on, our friend Kal was going unleash hell over here. It looks like the PD-1 is still going strong; the two biggest tumors (in liver and spleen) continue to show the most reduction. These are measuring at 3.2 and 4.1 cm, still plenty big by tumor standard, but way off their highs of 7.8 and 10.0 cm, respectively. The three other targeted lesions are all 1 cm or below and are holding steady. Santa dropped off one present a little early this year.
This is also infusion #13 – ironic because the house my parents just sold had a 1313 address (no wonder crazy stuff happens, what did you expect from that place?) so maybe there’s a little bit of cosmic karma at work here. Being a week until Christmas, I tried to bring some holiday cheer into the infusion center, although my piecemeal Santa outfit was pretty pathetic (nothing like my awesome Easter Bunny costume). I am glad there are no kids here to see this, but the hospital staff got a kick out of Santa hooked up to an IV. Hey, it’s the Yuletide, and if any place could use a bit of seasonal spirit, it’s a cancer infusion center. Plus, where else can I wear Santa pajama pants?
Speaking of early Christmas presents… after the last blog, I swapped emails with a fellow melanoma survivor, who wrote about struggling with anxiety and fear. I responded with a tangent that was more a pseudo-blog post. I thought back to last year, and how the very real fear of “Is this the last Christmas?” kind of permeated the holiday mindset, despite all our efforts to be positive. The change from one year to the next has been nothing short of staggering.
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).