I have been “free” from the hospital for a week, following my stem cell transplant for Hodgkins Lymphoma, although that has not meant free flowing good times and carefree living for me. My physical condition seemed to deteriorate after leaving the hospital and Wednesday was a lost day. By 1PM, I had surrendered to spending the rest of the afternoon in bed. I got up briefly to eat a small dinner and then went back to bed just before 7PM and stayed down all night. Thursday morning, I knew within 10 minutes of waking that nothing had improved. I was like a zombie. Every sense was mis-wired, every slight physical movement a complete annoyance and all I could think about was going back to sleep. Maybe a tiny hyper efficient fold of brain matter stood up and made a declaration to my mouth, or maybe someone in the house suggested it to me, but I called the hospital and got in touch with one of the cancer nurses and explained the situation. She promised to talk to one of my oncologists and call me right back. I didn’t wait for the call, and signaled my dad that we needed to go there, to the cancer center. Ten minutes later, my cell phone rang in the car, waking me up, and confirmed that we had made the right choice. The doctor pulled some blood and determined I needed fluids. They explained that the engraftment process sucks an enormous amount of fluids. I had been drinking, but not enough. This had not been an issue in the hospital because they automatically gave me a liter of IV fluids every day. But three days at home, with just my own intake of sipping water and gatorade, interspersed with hours of napping at which time I was drinking nothing, had not been enough. I felt much better after the fluids and have diligently kept up with a minimum of 64 ounces of fluid intake each day since then.
I really meant to write this post on Friday, because I still felt awful. I wanted to write it while I felt bad, because I wanted a reminder for the future of how I felt at that point. But the fact that I felt awful won out and that evening, after Dominic was asleep and I would have had enough peace and quiet to write, and I just went to bed. I think in a healthy human being, we are programmed to not quite forget pain, but to allow our brains to minimize pain and suffering, and focus on the good that can and does grow out of that pain. Why else would women agree to go through childbirth a second, third or fourth time? That is how this experience has been for me. I can already feel that as my recovery progresses, I am letting details of the suffering slip away.
Two or maybe three days ago, I was sitting at our kitchen table with my mom, and her phone rang. I didn’t know who was on the other end, but like most inbound phone calls lately, the first topic of the call was me. I heard her say, “Oh, he is doing really good,” presumably to a question about my current state of health. At that moment, I secretly considered grabbing the phone from her and telling whoever was on the other end, “That was a lie, I feel like shit.” Of course I did not do this, and I completely understand why my mom said what she did. I was looking and feeling far better than I had been just 24 hours before. Compared to where I had just been, I WAS doing really good! Granted, I was not feeling as good as her, or you, or anyone else I saw that day, but for a guy who very easily could have still been hospitalized, I was doing really good. But in that moment, my clouded, tired, weary chemo-hangover soaked brain, I did not feel like I was doing really good. And honestly that is how I felt all week…not enough energy to really even think rationally most of the time.
So, that is the bad news. The good news is, I was alert enough to recognize the benefits of being home. Let’s revisit that story in the above paragraph because there is much to celebrate just in those brief moments I described. 1.) I was sitting at my own kitchen table, not at a little wheely tray table that hovers over my hospital bed. 2.) My mom was able to say I was doing really good because of the improvements I had made. 3.) I was with my mom and not a nurse (no offense to the outstanding nurses at Emory who I know may be reading this, but Mom trumps Nurse…you understand). Being at home has it’s own challenges, but being able to eat real food, and sleep in a real bed, and not get vitals and blood taken in the middle of every night is so worth any little challenges.
And finally I have to report that over this weekend, I feel like I have turned another corner and started making significant improvements. Saturday was the first day since coming home that I felt like I had really taken a noticeable step forward. I took no nap during the day, managed a variety of simple activities including playing outside with Dominic for about an hour and ate a pretty normal dinner. Forgot to mention earlier, I have had almost no appetite and even when I do, I have had a very limited variety of foods that are acceptable to my mouth. So, I was happy with Saturday. And when Sunday dawned and it turned out to be a gorgeous day, I suddenly had a craving to get out and do something. I guess it was a case of cabin fever. So, Mom, Dad, Dominic and I packed a cooler with lots of fluids and a few snacks and headed out for a Sunday drive. We left Angela at home for a quiet afternoon of continuing progress on the bathroom project. Our destination was north Georgia and we visited the little historic town of Dahlonega where we got a light lunch, and then we drove down a scenic country highway to Amicalola Falls State Park. I gave an effort to walking the basic trail up to the base of the falls but probably only made it about 200 yards up the trail. It started getting steep and I had a suspicion we were nowhere near the falls yet, so we gave up and returned to the car. Even with only a tiny fraction of the normal amount of exploring I would have wanted, it was still a great afternoon to get out with my little buddy and enjoy some fresh air and pretty scenery. Thanks for driving Pappa!
I feel that the worst is now behind me and that each day will be an improvement on the last. Gosh, it kind of sounds like I am starting to wrap up the Hodgkin’s Lymphoma story! Not quite yet. There is still a lot to do and I am not considering any of this over until they give me a PET scan that proves it. That won’t happen for another two or three months.