16 Days Later……
One day, over a month ago now, I read the fortune in my fortune cookie while John was in Methodist Hospital Mayo Campus in Rochester, Minnesota. It said, “This year will bring you much happiness.” I kind of giggled, thinking that I couldn’t have gotten a more untrue fortune. Well, the next day things finally showed a slight improvement, and while there continue to be bumps and bobbles, the upward trend continues.
After being admitted to the hospital over Labor Day weekend, John returned home, got a reduced dose of his chemo and we had one of the best days together in months. His mind was crystal clear and he wanted me to tell him the story of what had happened all summer. To him, it was still mid-June. To him, it felt like we still had the summer in front of us. To him, the struggles and battles of those months were much shorter than they were for me. We talked all day, cried, and I made him the promise that if he were ever to be in such a difficult medical state again where he could not speak for himself, I would stand strong and forever be his voice.
I’ve learned a lot over the summer. I’ve learned the names of countless medications. I’ve learned the upper and lower limits for safe vital signs. I’ve learned dosages and purposes of countless medications. I’ve learned exactly what his body needs to keep a safe bowel regimen (ewww) and I’ve seen exactly what happens when this regimen isn’t followed and he is given too much (ewww again). I’ve come up with a new phrase that describes my job as his voice; I am a compassionate, confident advocate. I respect the medical knowledge of the professionals who have dedicated so many years to the science of what they do. I also have learned that I know a lot about John, what works, what doesn’t work, and I have been able to relay tons of medical information from one hospital to another. This has been really helpful, as he has been in ten different hospital settings where the first question is usually something like, “So, exactly WHEN did all of this start?” or “What exactly brings you here?” which requires finesse in boiling down a three month saga into something that will hold important information within 30 seconds or less. Come to think of it, they really should just say, “In 30 seconds or less, tell me why you are here.” I should then record my answer to replay for every other medical professional who will come to work with John. Hmmmmm….. is there an app for that? Maybe I’ve finally found my fortune!
Well.. I’m getting further from the 16 day story. Back to the point. Exactly why are we here? On Friday John had a blood transfusion and then a chemo infusion. It was a long day. After 10 hours in different transfusion and infusion rooms, we went home. John slept all day on Saturday and most of Sunday. By Sunday, he was a little more “off” than I would have liked. He had a hard time following conversations and seemed “out of it.” I went through the list of reasons that I have learned could be causing this, 1. low hemoglobin, 2. low magnesium, 3. high blood sugars, 4. narcotic pain meds, 5. normal chemo fog. Of course, any combination of the five could also be the answer. He had just had a blood transfusion, so I thought that his hemoglobin was probably still good. His blood sugars were really high, and as he has been a diabetic who had recently been battling super low blood sugars, this was a problem I wasn’t ready for. We didn’t have any insulin. He was off of all diabetic meds, and I didn’t know how high was high enough for worrying. I called. On Monday morning they gave me directions on when and how much insulin to give. That problem disappeared, but the confusion and lack of engagement didn’t. That day we had an appointment with the cardiologist. I told them about the symptoms I was seeing and asked if they could test his hemoglobin and magnesium as these have caused similar symptoms in the past. I was shocked when the cardiologist said, “Sure!”
The results came back that his hemoglobin was still good, but his magnesium was low. Because of how awful he looked and acted, I took him to the emergency room where they did a good workup and declared him fit to go home. This was the first time he had been treated and released in months. I took a picture.. but in the pit of my stomach I worried that we weren’t done with this yet. We went home. He got worse.
At home, he started to act very odd, became mean (and John is rarely if ever…mean). He wanted to sleep and didn’t like being interrupted. Because he hadn’t eaten since last Thursday (it was now Wednesday) I called the oncologist to find out when this should become something we worry about. When I told her the symptoms and she looked at his bloodwork from the ER the night before, she told me to bring him into Marshfield. And here we are.
Admitted. At first the doctors were puzzled by what could be wrong, but when our oncologist came in this morning, she told us that she was sure John was having a toxic reaction to the chemo on Friday. She said that he would improve and it would take a few days. She wants to keep him on the same chemo plan but decrease the dosage and then slowly increase it as he tolerates it. We are back at our “penthouse home” in Marshfield, Wisconsin with doctors and nurses we haven’t seen in a few months who now feel like family. It’s weird to say that we missed them, but we have. Of course, everyone remembers John as the sweet guy who has had a rough journey this summer, and I’m the wife who stands my ground (hopefully with confident compassion). John isn’t able to really understand or talk about what is going on yet, but I’m confident that when his mind clears, he will say that this hospitalization was an improvement compared to what he has been through in the past. As of right now – his vitals are normal, there is no fever, his pulse, oxygen, and blood pressure are all good, and his blood sugars are holding well. He just isn’t with us because the poison of chemo is coursing at toxic levels in his body at a time when his white blood cell count is also low. Give him a few days and we expect to be out of here, starting over with our countdown toward the goal of 51 days at home!
