April 25th, 2016

I got three new tattoos today. Three more dots to help line me up precisely for my next round of radiation. They were able to use three old tattoos from my previous radiation in October, so that saved some time in the initial preparations for radiation. Which is how, unexpectedly, I am back in Corning already. We flew in this morning expecting to stay for maybe a few days, until the radiology team at MSKCC could see me for the scan, and tattoo setup appointment. Perhaps, I thought, I'd just stay in NYC for a few weeks, through all of my radiation treatment. I brought a suitcase, backpack, and tote bag full of everything I'd need for an extended stay. But they somehow had an opening in their schedule just an hour after we saw my main radiation doctor! And, just as incredibly, there were two open seats on the flight back that afternoon! The corporate angel flight program has been absolutely wonderful for us, and we are so grateful to have that option for transportation. Other than hauling around a bunch of unnecessary luggage, today went as smoothly as could be reasonably imagined.

Meeting with the head radiology doctor is always encouraging. Her optimism, knowledge, and confidence are certainly reassuring. Interestingly, I was told that they rarely got "this far" until recently, meaning that getting the abdomen clear in cases like mine was, not long ago, very difficult and uncommon. Now, she said, they see many more cases where the abdomen gets cleared of all cancer, but some spots show up in the chest. Everyone seems pretty confident though that, with the surgery to remove the spots in my chest done, and with radiation coming up soon to zap where those nodes were in case anything got left behind, I have a pretty good chance of having my chest all clear. We'll keep working, praying, and hoping for the best, while embracing the reality of this tremendously lethal and tenacious disease. For now, we keep going one day at a time, remembering to make the most of it while we can.

April 18th, 2016

I write this from a room on the pediatric inpatient floor of MSKCC where I await the removal of my chest tube. It's the only thing keeping me from leaving the hospital at this point, but it has to stop draining fluid before they take it out. Makes sense. The amount it has been draining has been "slowing a little bit" for a couple days now. Which I have to say is better than speeding up! It could always be worse, or at least, more complicated. As for the biopsy itself, the procedure went fine and they removed as many possibly suspicious nodes as they could find. The one they sent for a quick test showed tumor activity, but until the full pathology report comes back at the end of the week we won't know much more. Likely, the future plan of action includes radiation to my chest and probably chemo as well. 

All the other aspects of recovery from my biopsy/surgery Thursday have been smooth as can be, and other than a stiffness in my left side which I only notice when I move a lot or am asked about it, I feel completely fine and normal. This is no doubt due, at least in part, to the hydromorphone I am on. A very low dose, but still enough that my brain is often just a little bit foggy, which makes it hard to write or do simple arithmetic with numbers above 20. Christina and I played ticket to ride yesterday, and I was, suffice to say, not quite on top of my game when it came to moving the points marker up and adding the destination ticket points at the end. There's really not much else to say. My mind is too foggy to come up with anything super interesting, but I just wanted to update how it's going. In short, uneventful, which is a lot better than hectic and unexpectedly complicated or busy.

April 13th, 2016

Our Campsite at Joshua Tree

A Joshua Tree

It's well past time to finish up the vacation reflections, and to get back in the habit of posting here weekly. I'll put some pictures here of the trip, but if you want to see more I posted a lot to my Instagram (my username is @MorganBolt_Author). Let's start with Joshua Tree.

A truly unique area, Joshua Tree features an array of cacti, large granite boulders, and of course, Joshua Trees! What is perhaps most interesting about the Joshua Trees themselves is that they are closely related to yucca plants, and in fact start out looking much the same as a typical yucca, until they grow tall enough to split and branch off. We enjoyed the best campsite of our entire vacation there, and were able to hike a good bit on some of the dirt roads, as you can take dogs there. It was great to enjoy the relative solitude the park afforded. Overall a quiet, beautiful, and utterly unique place.

We stopped for a night in Las Vegas, only because the campsite where we planned on staying in the nearby mountains was completely full. On the whole it seemed rather small, though I guess I might be comparing it to New York City, which isn’t entirely fair. It also seemed to be, like any place, populated with entirely normal people living exceptionally normal lives; a good reminder that, no matter where people live, they’re all merely people.

Death Valley

Next came the heat and shockingly large crowds of Death Valley. The wildflowers had begun to decline since their peak a few days before we made it there, but there were still plenty of flowers around. Without them, I can only imagine how truly desolate the place must be. It got prettier—and the heat subsided—as the sun set, which helped. During the heat of the afternoon though it was easy to see how the park earned its name. It's the sort of place I am glad to have visited, but do not particularly need to visit again.

Sequoia

Sequoia, my new favorite national park, was our next stop, and I could go on and on about it, but I’ll resist that temptation. It rained the evening we arrived, which meant it snowed higher up (where the sequoias grow). We were grateful to have all-wheel drive, which meant they didn’t require us to have chains to travel the winding mountain road up to the sequoia groves. The pictures I took speak for themselves, so I won’t ramble about the impressive, almost unbelievable size of the trees, or the splendid palette of white, red, and green that the snow and sequoias teamed up to create. We enjoyed a wonderful ranger-led snowshoe tour, and had a splendid time exploring the forests and meadows there. Needless to say this is one park we hope to visit again.

Mother and Baby Sea Otter

San Francisco was our next stop, and there we picked up Christina’s sister who flew out to meet us on her spring break from teaching. We got Chinese food (I’m not sure what exactly, but it tasted amazing!) and ate with a view of the Golden Gate Bridge and Alcatraz. We made sure to drive Lombard Street too. Then we left to drive down the coast, stopping at the incredible Monterrey Bay Aquarium, where we saw sea lions and sea otters, including a mother and her pup. In the wild, from the observation deck at the aquarium! They had sea otters in the aquarium too, which are used as foster mothers for orphan pups, but seeing them in the wild was truly extraordinary. The wildlife viewing there alone is enough of a draw, even without the wonderful aquarium inside.

Elephant Seals

As we drove along the coastal highway, we kept an eye out for whales, as gray whales were supposed to be migrating north along the coast. Sure enough, not long after we started to look for them, I spotted a whale spout a few hundred feet out in the water. As we were perched well above the water on the edge of the mountains, we had a pretty good view, and throughout the day saw several mother and calf grey whales as well as a small pod of humpbacks, a couple dolphins, more sea otters, and a beach full of northern elephant seals. The spectacular scenery and abundance of wildlife were definitely a highlight of the trip, and the Big Sur area ranks among the neatest places I’ve been.

San Antonio

A couple stops at Six Flags parks along the way back (outside LA and in San Antonio) brought us to New Orleans, where we stopped briefly for beignets at Café du Monde, and finally on to Tallahassee, where we visited Christina’s parents briefly for Easter. Then a final long day of driving brought us back to Corning. In all, I drove over 9,000 miles, each one filled with memories we will cherish forever.

Faced with less-than ideal scan results, we decided to spend make an adventure out of last weekend, and went skiing and snowboarding (I do both) at Jay Peak in Vermont and Whiteface Mountain in the Adirondacks (New York). Both are mountains I have wanted to visit since I first heard of them, and they did not disappoint.

As I write this, I’m sitting in the Ronald McDonald House in New York, and will have surgery tomorrow to remove/biopsy some suspicious spots in my chest. We have no idea what the results of that surgery will be, or what comes next. It could be a week before we get the results and have an idea what comes next. For us, the unknown and uncertain nature of the future cannot be ignored. The only thing to do is really the only thing any of us can do in light of our mortality; live life to the fullest while we can, and not worry too much about tomorrow.