Things are going to change.
As a caregiver, events of a week like this are your own personal nightmare. It was mine. Things are totally out of your control, and you are basically ignorant about what the hell is going on with the most important person in your life.
You try to keep focused on what you know, and try to find out what you don’t know, all the while she lays in the emergency room, or the ICU or the oncology floor, and her energy is focused on getting through whatever it is that is threatening her body and her life at that time.
It is probably a more difficult time both intellectually and emotionally for the caregiver than it might be for the patient. The patient is only concerned with fighting the forces that are trying to do her body harm, and possibly kill her. The worry about what is going on is left to the caregiver.
It is Wednesday morning, and by 9:00 Joanie was off Norepinephrine, and they were satisfied in the ICU that her blood pressure had stabilized. So the day was off to a good start.
Dr. Thomas came in and told us they would give her two pints of blood today, and then she would be moved upstairs to the oncology floor where she would continue to get antibiotics through her IV for a couple more days. They had been pumping her full of those since she got to ICU.
He told us her white count had started to move up, and after a day or two of more antibiotics, and her counts were good, and there was no problem with her blood pressure and temperature, she could probably go home.
By 6:00 that evening, they had finished giving her the two pints of blood, and she was moved up to the oncology floor. I could see the difference by then. She was feeling better despite what she had been through, and was already making a lot of noise about wanting to go home. That would have to wait.
The next morning, Thursday, Joanie was doing well when I got there. Her counts were continuing to improve. Dr. Thomas stopped in, and told her he wanted to keep her in a least one more day, probably two. He said Her potassium was low again, and her creatinine was still a bit high. He wanted to see those numbers closer to what they would normally be before she was let go.
Needless to say, Joanie was not happy hearing that news. She had already been on the phone that day to her office, taking care of business, and having Carol Nitschke take care of some things for her. It was like this latest experience had been but a speed bump in this process, and she was ready to move on.
While we talked that day, Joanie told me that she was not going to object to them changing the chemotherapy regimen by taking one of the drugs out of the mix. I had to reluctantly agree with her. I also reminded her, she would be scheduled for a PET scan on the 30th of May, and we had a meeting scheduled for June 2nd with Dr. Carson in Minneapolis when she would have a chance to assess the progress, or lack of progress, of her response to the first three treatments. Carson would be the major voice in what the remaining three treatments would look like.
Friday morning, Dr. Thomas came in, and after seeing the white count numbers, and the other numbers he viewed as important, he told her she could get ready to go home. He did tell her he was prescribing Cipro, an antibiotic she would take for about another week to ten days to deal with her urinary tract infection.
Joanie then told Thomas what she had told me the day before, and that she wasn’t going to object to any changes they might make regarding the chemotherapy. Thomas told Joanie that even if she wanted to continue with the current treatment plan he would not do it. As he said, “Three treatments, and three trips to the hospital, two via the route of the emergency room, and the latest through the Intensive Care Unit, and her experience with septic shock was enough.”
There wasn’t an argument to be made with his decision, as much as we had wanted the regimen that had worked so well before with limited side affects, to work again. It had become obvious to us that this situation was different from the situation that existed in 2003, and for me, that raised the level of my concern about where this was going.
By Friday afternoon, Joanie was at home on the couch with Muffin on her lap, and she was quite happy. To her it was like the last five days had never happened. She didn’t talk about it at all. She was more concerned about getting back to her office on Monday and back to work. I remember telling her friends in an email I sent out following this latest episode, that it seemed to me she had the constitution of a Brahma bull.
She also had an innate ability to realize that yesterday now meant nothing, and what was important was today, and the plans she was making for tomorrow. She knew this without ever having been told this was a psychologically healthy way to look at life.
She just knew it, and to me that’s what made me love her even more, and believe she had a chance to beat this.