Leukemia, with unfavorable chromosome translocation is definitely a test of patience, resilience, and faith in God. About the time I feel we have passed the test, we encounter a new problem to work out. Day +70, weeks ago, seemed like a day where maybe life would feel normal again, and it does at times but it is still very much a struggle.
Between clinic appointments, Jen and I have traveled back home to spend time. But because she tires so quickly, we travel to and from usually on different days. Her next appointment is on Friday afternoon and the current plan is to drive home tomorrow morning and return on Friday morning to Columbus. Then sleep here in Columbus before traveling back on Saturday morning. We then stay until Monday evening and drive back to Columbus for a Tuesday morning appointment. This makes for a busy week of coming and going and resting in between.
Last weekend, we had planned to go home on Thursday evening but Jen wasn’t sure she wanted to go because she had developed some pain over the course of the last couple weeks. They gave her a steroid shot in the clinic on Thursday morning and it took until later Thursday evening before she was feeling better.
She slept most of Friday away and much of Saturday. She had planned to go to a friend’s wedding for awhile on Saturday but never felt like she would be able to make the drive into Lima, go to reception for a short while, and drive back. Instead she was able to go to her cousin’s graduation party outside Ottoville for a short time before coming home to collapse in bed.
Jess spent most of the weekend with us and then on Sunday, Matt came home and we all were home under the same roof at the same time for the first time since early March. It was the best!
But on Monday by the time we got back to Columbus, Jen was feeling fatigued and an increase of blood in her nose took us to ER early evening. Of course nothing happens fast at the ER, and by 3am, they decided a high potassium level and a racing heart episode, they were going to admit her. So I came back to hotel and slept for about 7 hours. Jen messaged me at 11am and said they were sending her home, so I went back. She was still in the ER, had received fluids and platelets, and decided to release her. We sat for the next 3 hours waiting, watching her nose bleed (for some unknown reason), and finally pulling out of parking garage mid afternoon.
We are still confused about higher potassium levels, and nose bleeds that got worse after receiving platelets but after a long nap, she felt much better. We treated ourselves to some cheesecake and called it a day.
I’ve decided AML is disease that requires constant tweeking. If you think you can plan anything days in advance, you are mistaken. And if you think you are now over the hump, think again. The good news in all this is her counts are holding for longer periods with transfusions coming less often and her white counts not dipping as fast as they were a week ago. She still needs a shot of neupengen to boost her WC every few days, but it feels ever so slightly we are headed in the right direction. Tweeking will be a common theme for most likely months to come.