This summer we have been fortunate to have taken several fun weekend trips with the kids, but Chip and I really wanted to take a longer trip together. Just the two of us. We plan our lives in six week increments–from one set of scans to the next–so we had identified and penciled in a week in August for us to travel if we could. Don’t get me wrong, our calendar is chock full of weddings, birthday parties, work trips, etc., but we don’t pull the trigger on booking flights, renting cars, arranging logistics for the kids, or requesting time off from work until we have passed our next set of scans. That’s not a complaint, just our reality. If scans go well, then we know we can set in motion our next six weeks of living. If not, we remain on stand-by to search for the next best treatment option for Chip wherever that may be.
As I have said before, I am a planner, a professional scheduler, so while this adjustment was initially jarring to my little system, it’s now quite liberating to not have to commit to anything so far out. In the past, I would look at our often fully booked calendar and feel suffocated by the fact we were fully committed for the next couple of months, but now? Well, our calendar still looks exactly the same but maybe we’ll be there, maybe we won’t, and I kind of like having that freedom now. As I have discovered with much of life, you just have to tweak your mindset a bit in order to find that silver lining I am always reaching for.
Two summers ago, Lady Linda and Joe Boyd drove up from Mississippi to keep Joe for the week for us. Initially, our intention was to either drive the Amalfi Coast in Italy or drive the Pacific Coast Highway in Central California. The itch to travel has always run deep in my veins, but our honeymoon to Greece was the first time Chip had ever traveled abroad. Chip couldn’t stand the thought of being so far away from Joe, who was only 1 1/2 years old at the time. Mind you when Joe was 14 months old, I spent two weeks in Mali and Tanzania, Africa traveling with my parents. Being fully respectful of Chip, we ended up spending a week in Georgia at Sea Island and visiting with our friends Berkley and David in Savannah on our drive back home. Even though it wasn’t originally what we had in mind, it was still an amazing and relaxing week. And we escaped the infamous D.C. earthquake! My poor parents really received the shock of their lives that day though. Literally.
When we decided we wanted to try to take another trip together this summer, we revisited our two “drive” itineraries from that summer. We both really wanted to go to Italy, but as adventurous as I am, neither of us felt comfortable leaving the States. At least in California, we had access to U.S. doctors and hospitals if we needed them plus had several friends up and down the coast which, subconsciously, was a huge source of comfort to me if something happened.
Chip’s previous set of scans performed seven weeks ago didn’t show the drastic improvement his first set of scans on his trial drug, LDK, had shown. Our friend Clete accompanied Chip on this particular overnight trip, and Clete’s wife, Ginny, spent the night with the kids and me. That set of scans showed all tumors were stable but this new “cloudiness” had appeared in one of Chip’s lungs. The staff at Fox Chase weren’t quite sure what that cloudiness was either. It could have been one of three things: a normal upper respiratory infection, pneumonitis (which is pneumonia-like symptoms and a common side effect of lung cancer treatments), or a spread of the disease. If Chip had contracted pneumonitis on Xalkori, his first treatment, he would have been permanently pulled from the drug. But on this trial, they would temporarily suspend the drug, treat the symptoms with steroids, and resume the treatment. Not ideal but something we could handle. The oncologist wanted to watch things and instructed Chip to return to Philadelphia immediately if he developed a bad cough or started to experience any shortness of breath. The results weren’t exactly bad but not exactly what we had hoped for either. It took us a couple of days to re-calibrate our expectations, but overall, we decided we were generally pleased with his progress.
Two weeks later, the weekend we spent as a family at Nemacolin, Chip developed this nasty cough. Let me tell you, your mind can race to some dark, dark places when you are instructed to “watch things” and then this happens. The entire family had been passing a cold and cough around so I knew it could just be that, but still, for the first time in two months, I became really scared. I mean, really. After we returned home that Sunday, I broke down that night. Sobbed like I hadn’t sobbed in months. We were already scheduled to go to Philadelphia that week for a day appointment we have every alternating six weeks, so we e-mailed our oncologist’s nurse, and she moved our appointment up and scheduled a chest x-ray for Chip.
We dropped the kids off at daycare early that morning and began our drive up. We were both anxious but in our typical style, also calm and most importantly, together. At our appointment, we began to tell the oncologist’s nurse the cough had been quite productive as they politely say in the industry. I guess “productive” is better than “coughing shit up.” We also told her Chip had been feeling quite well, had great energy and stamina, had been playing golf, swimming, doing yard work, etc., etc. Imagine our shock when she was relieved to learn it was a wet cough full of mucus! THAT was a good thing. A dry cough and steadily decreasing energy would have most likely indicated pneumonitis or a spread of the disease, and nothing abnormal showed up on the chest x-ray, so she congratulated us on having a chest cold and cough and prescribed good ol’ OTC Robitussin DM and sent us on our way. But before we left, I got up enough nerve to ask her if she thought we were in good enough shape to try to take a week-long trip in one month. She said yes as long as there were no surprises at our next set of scans scheduled in three weeks.
To say that we were giddy on our drive back home that afternoon is an understatement. So giddy that Chip took a wrong turn on our way home, which set us back about two hours. Asshole. By the way, did you know that even if your husband has stage IV lung cancer, he can still be an asshole? It’s true. It took me several weeks after Chip was diagnosed to realize that we could still be authentic in our marriage. I could still be a bitch, he could still get his own glass of water, we could still exchange knowing looks and talk to each other without ever having to say a word, we could still be mad at each other, we could still love each other passionately, he could still take out the trash, we could still stream Netflix and snuggle on the couch, we could still do all kinds of normal people things together. It was such relief to me when I figured that one out.
I had exactly four weeks to book flights for my parents to come up and plan a week-long trip in California–all while trying to finish up my job in the Senator’s office, train the new scheduler, and get myself somewhat settled in my new office. Oh, and Chip’s parents came up one weekend so we could travel to Chicago for work. Well, work for Chip but pleasure for me as I got to spend the weekend playing with one of my best friends from home, Charlotte. I usually savor the months leading up to a trip, because I find planning the trip to be nearly as exciting as taking the trip itself, but I just had to make do this time. I ordered a couple of books on Amazon, banged out a few e-mails to friends in the area or who had taken a similar trip for recommendations and would sit up at night, after everyone went to bed, on the Internet reading various reviews on different routes, hotels and restaurants. It may not have been my best work to date, but I thought I had crafted a pretty decent itinerary for us.
Lady Linda flew in the day before we were next due in Philadelphia for an overnight stay for our MRI and CT scan, scheduled bright and early the following morning. One of the great parts about being on a trial is you receive your test results within hours. We were euphoric to learn both scans revealed everything was stable. Boom! While we waited on his labs to come back and for our next round of meds from the pharmacy, we started texting our parents and e-mailing our friends with the great news and salivating at the thought of this amazing truffle and poached egg brick-oven pizza we always eat from this pizzeria called Stella’s, which has become a post-scan tradition of ours.
It seemed to be taking longer than normal, and we were both getting antsy and pretty hungry since Chip can’t eat anything after midnight pre-early morning scans. As nice as all of our nurses are, busting our way out of the double doors of Fox Chase Cancer Center is pretty damn exciting. A couple minutes later, the drug trial protocol nurse came in and informed us Chip’s liver enzyme levels had spiked and were high enough for them to have to temporarily suspend him from the trial again. Fuck! I was dizzy. She truly seemed as disappointed to deliver the news to us as we were to have received it. She immediately said she and the oncologist had discussed our upcoming trip, and they both really wanted us to go, so they had made a decision to go ahead and send us home with our next 21-day supply of chemo along with four prescriptions for blood work to be performed twice a week until the liver enzyme levels had gone down enough in order for Chip to resume the trial. Fuckity, fuckity, fuck. They were really working hard with us to help us maintain our quality of life, which we appreciated, the pizza was still delicious AND we could still go on our trip–but up and down, up and down the roller coaster we sure rode that day.
The day after we got home, Chip made a road trip with a friend down to Myrtle Beach for the weekend for another friend’s bachelor party. Chip doesn’t drink much anymore as alcohol turns into sugar, but considering he has a tumor on his liver and has now been pulled from the trial twice due to elevated liver enzyme levels, he really, really couldn’t afford to drink on this trip. Spending three days at the beach and on the golf course with your buddies sans alcohol isn’t exactly the easiest thing to do, but not being one to miss out, Chip still played flip cup and beer pong with water, so he was well hydrated by the time he returned home that Monday night.
The following day, as prescribed, Chip had blood work drawn locally. It would take 24 hours for the results to come back, which placed us in San Francisco at the airport standing in line for our rental car the next day when Chip received a call from our protocol nurse at Fox Chase with the news his enzyme levels had lowered enough for us to resume the trial. PTL and hallelujah!! He had only been off chemo for seven days, and we didn’t have to find random labs on our vacation. I immediately installed the In-N-Out Burger app on my iPhone, and luckily, there was one located less than a mile from the SFO exit. Maybe it was the good news or the fact we were finally on our trip that made it taste so good, but that cheeseburger, served up animal-style, with a side of home-cut fries and a vanilla milkshake, was pretty damn amazing. We would end up chasing that food high for the rest of our trip.
Since we had already done San Francisco together several years earlier and this trip was intended to be a scenic one, we crossed over the Golden Gate Bridge and headed straight to Muir Woods.
The drive up was quite steep and full of switchbacks, which Chip was just flying around as a boy from the Mt. Washington Valley could, but this girl from the Delta was about to have a heart attack. Much to Chip’s amusement, I was holding on to the door handle with one hand and the dashboard with the other while I leaned toward the center of the car with all of my might thinking that would help keep our car from toppling off the side of the mountain.
I had been to Muir Woods years ago but being quite honest, was too hungover at the time to enjoy it, so I was glad to be back–and out of the car! In the parking lot, we popped the trunk and dug our socks and tennis shoes out of our suitcases. I noticed that folks around us had walking sticks, cargo shorts and camel packs on and considering all the National Monument’s trails are either paved or covered with wooden planks, I made fun of their unnecessary aggressiveness. Damn American tourists with all of their fancy gadgetry.
Chip and I very much enjoyed our walk marveling at the beauty and height of the redwoods. The temperature was perfect as we were shaded by a canopy from the trees. On our walk, we were constantly surprised and awed by pockets of sunbeams periodically peering through the treetops at us. I marveled at our beautiful, beautiful world. It was so beautiful that when it was time to turn around and go back, I spotted a map of the grounds displayed on a wooden sign, and after briefly reviewing it, I suggested we take a different path back. During my brief review, I failed to notice this new path was actually a hiking trail–not a paved or covered pathway like we had walked in on. Holy crap! The trail was circuitous and steep and like 76 miles long, and I was wearing cropped silk pants with ruching on the sides and neither of us had any water! Who looked like the asshole now? I know that’s what I get for making fun of those people in the parking lot, and I am the first to admit, I am constantly eating my own words, but at least I looked cuter than they did so THERE!!
On mile what felt like #37, I started to panic over what I had gotten us into, fearing the hike was too strenuous for Chip to physically handle, but I soon realized I was the one unable to keep up with him. He absolutely loved it, and I ended up loving it, too, you know, once we had finally reached the visitor’s center back at the entrance. Don’t think I didn’t go back and hunt down another map on a wooden marquee, and much to my shock and disbelief, it only ended up being 2.6 miles in length, but I’ll be damned if I didn’t pick the most difficult hike there. They recommended allowing two hours for the hike. Ha! We had nailed it in 45 minutes!
Since it had been two hours since we had eaten lunch, Chip swallowed his pills down with a cup of watered down ice tea sitting in the car in the parking lot. I knew every cell in his body was tingling at that moment, so I have no doubt those cancer cells received an especially good water boarding that day. The thought of that sure felt good.
We later checked into our hotel located in Union Square, I took a quick nap since my body was still on East Coast time, and then we walked to this random, yet one of my favorite, Chinese restaurant located in the financial district called R&G Lounge where we devoured the house specialty, salt and pepper fried Dungeness crab. After dinner, I suggested we walk back to our hotel via Nob Hill, because I wanted to see Grace Cathedral lit up at night, so we walked up, up, up from Chinatown to Nob Hill. The walk was much longer and much more steep than I had remembered, but of course I acted like it was NBD, but it was 1 AM on our body-clocks, and for a brief second there, I literally thought Chip might kill me. I knew he at least wanted to, but thankfully, was a good sport about it. After two adventure walks in one day, he rightfully banned me from picking any more routes for the duration of the trip.
To be continued …