The very last part of discharge from the hospital is medications to take with you and discharge instructions. They always seem to take forever at Sloan Kettering.
At the time of discharge, my prescription for pain medicine was 10-15mg of oxycodone every 4 hours (as needed). When they handed me my prescription, it had the same instructions. But, the bottle contained only 20 pills - 100 total milligrams and the label said it was a 3 day supply. This was not the first time that they had given me way too little pain medicine on discharge, and rather than argue, I decided to just get out of the hospital and then talk to my surgeon's office the next day about the issue.
I had arrived at the hospital with about 50 x 5 mg of oxycodone, so I knew I had enough in total for 3-4 days, so I wasn't too worried. The discharge nurse immediately recognized the discrepancy and gave me a 15mg dose just before I left.
As I left the hospital, because I was alone, the hospital had to follow some protocols closely. I had limitations on how much weight I could pick up, and they didn't want to turn me loose into the streets with a suitcase and computer bag. If I'd had a problem, they would have been responsible.
So, I was wheeled to the exit in a wheelchair. From there, security called a car service - twice the price of a normal taxi, but with better service, including handling your bags for you. It took a while, but I was finally free.
I got to my hotel and tried to just lie down for a while, but things were different. After almost a week in an infinitely adjustable hospital bed, it was nearly impossible to get comfortable in a regular bed. I finally found a comfortable position and slept until the pain medication wore off and the pain woke me up. By now, it was 6:00, and I decided to take some more pain medicine and look for some dinner. Regretfully, in two laps of the local block, absolutely nothing looked good. I finally settled for some shrimp pad thai, and to be honest, it was basically the worst pad thai I've ever had. I ate half a dozen bites before giving up on eating. I'm amazed sometimes at some of the restaurants that survive in NYC. On my last surgical trip, I had a pizza delivered and it was honestly the worst pizza I'd ever had. How can a bad pizza place survive in NYC (and how did it get 4 stars on Yelp)?
After that, I got my bags ready for the trip home and got ready for some sleep. I'd found a single position on a regular bed that was comfortable, and I had to get into that position and simply not move or I'd end up in pain.
I watched a TV special about the Lakers-Celtics rivalry from the 1980's as I dozed in and out of sleep. It's a really good short series that ESPN did, and I learned a lot about that storied rivalry - stuff that we would know in the internet era, but was never really well known in the 1980's. Finally, a dose of pain medicine about 10:00 put me off to sleep. I woke up about 2:30 to take some pain medicine and again at about 7:00. At 7:00, I took some more pain medication and decided to get myself ready to leave for home. I had plenty of time with an 11:30 train, but I didn't want to risk missing the train, which would have forced me to change my destination from my hometown to Albany instead. Going to Albany would have meant a six hour drive for me wife, so missing the train was just not an option.
I was in a cab by 9:30, and it took almost an hour to cover a mile or so to Penn Station. The traffic was crazy and my so was my cabbie. He was so aggressive and obnoxious that another driver deliberately hit him part way through the trip, after my cabbie cut the other car off very badly. For a while, I was afraid I'd never make the train on time, and I was certainly glad I'd opted for the early start.
Finally, we got there, and I looked for some coffee and something that I could eat on the train later in the day. Regretfully, no food sounded good (a problem that persists still), so I just went with coffee.
My train was a bit late, but I finally got on board and settled into a seat. From here, I knew I had an easy day. I opened my laptop and for the first time in a week, and I started working. It honestly took the majority of the day just to catch up on e-mails.
Around lunchtime, I was hungry, but the only food in the bar car that sounded appealing was peanut M&Ms. So, my lunch was that plus water.
Early in the afternoon, I got a phone call from my surgeon's office, just checking up on me. I told the NP that I talked to about the problem with the pain medicine prescription. She said that it was a gross error, and offered to get me a prescription in Vermont. However, the two states (NY and VT) have very different rules about pain medicine scripts. In NY, everything is electronic. In VT, everything must be done on printed and watermarked prescription paper. We were unsure how to get a script from NY to VT. So, I told the nurse that I'd talk to my primary care provider the next day to see if she could help. It turned out that she was out of the office the next day, but the physician covering for her took care of everything for me, and pain medication was no longer an issue. I could write pages about this process and the issues I've encountered the past few years. As a cancer patient, I have an easier time getting pain medications than most patients do, but the current backlash against opiates makes it tough for many patients to get medications they need. Not every patient gets addicted, and in some cases, opiates are the correct medication for the situation. I honestly worry that even as a cancer patient, the day will arrive when appropriate pain medications will not be available to me. To be honest, that scares me more than the cancer itself in some ways.
Bit by bit, we made progress towards home. We ended up being a bit late, but I was off the train in my hometown by 7:15. We made it home in a few minutes and I immediately changed into pajamas. As I changed, I decided to weigh myself. I was at 205.
When I started chemo in February, I was at just over 225. When I left for NYC, I was at 215. My appetite still has not returned, and this morning, I was at 199. I recently read an article about weight loss in patients with advanced cancers (and I'd be foolish to try to pretend this isn't an advanced cancer) and how even overweight patients tend to fare more poorly if they lose weight due to treatments. Right this minute, my lack of appetite and ongoing weight loss are my biggest concerns. I am positive that a lot of the weight loss is muscle mass because I can't lift weights right now. In my opinion, my ideal weight is about 190-195 pounds, but that's with some decent muscle mass. Hopefully, as I start training again next month, my appetite will be stimulated by exercise and I can re-gain some lost muscle mass.
I've now been home for 9 days. Bit by bit, the pain has been getting better and I'm taking less and less medication. I can sleep in more positions now, although some positions are still uncomfortable. I've even had a couple nights where I slept through the night without pain waking me up.
I am dealing with night sweats, which are unpleasant at times. They are especially unpleasant on hot, humid nights when we are using the air conditioner and I manage to soak through PJs to my sheets. Between my wife dealing with menopause and me dealing with these night sweats, there are lots of times where one or more of us is awake at night.
I did end up getting an infection in my incision, which had never happened before. Originally, the staples were supposed to be removed last Thursday, but the incision started to drain some nasty pus and blood, and the skin got very red and swollen. I've been on antibiotics for a week now, and the staples are finally scheduled to be removed tomorrow.
This has been a problem because surgeons do not like to remove the staples from another surgeon's work. Initially, I was sending photos of the incision to Sloan Kettering on a daily basis, and they were going to write a letter authorizing the removal of the staples at the two week mark. But, the infection has made them a bit gun-shy about writing such a letter. I honestly think that they would prefer that I make a trip to NYC to have them removed, and I won't be surprised if that's a requirement in the future.
Luckily, a local surgical oncologist got my records yesterday and has agreed to do this work. I'm almost surprised that he agreed to do it, because I chose the surgeon in NYC over him for my surgeries. I simply wanted the surgeon more experienced with liposarcoma, but I've had some surgeons take things personally when I selected someone else over them.
After the staples are removed tomorrow, I am hoping that our weather finally turns more summer-like (not in the forecast, regretfully), so that I can start walking on a daily basis until the point that I can start lifting weights again. I hope to be back at CrossFit within the month if all goes well.
And, I'd like to return to fly fishing as long as the water levels are low enough that wading feels safe. I know I'm not at 100%, so I need to be careful about wading right now.