I get it. It’s been a ride for us as well. My husband had his BMT in September for AML. He didn’t do well mentally with the long hospital stay. Couldn’t sleep, couldn’t walk around due to their safety protocols. Needed a staff member to walk him even tho I was there. Didn’t understand that. After we got him home, everything looked great, then he got a lung infection, spent weeks on heavy pain meds bc of the chest tubes then had to detox. Lost so much weight he couldn’t stand on his own. Got through 2 weeks at a rehab hospital then 2 1/2 months of rehab. He gained back 25 pounds. Now we find out the transplant has stalled- they detected some blasts in his bone marrow biopsy so back to chemo. You are right. It’s like living a nightmare. Just when you think it’s going ok. I don’t blame you for worrying. I don’t think you are over thinking. I wish I knew half of what you know. If we don’t advocate for ourselves and loved ones who will? My husband also had fluid around his heart, has had echocardiograms, MRI’s. That is slowly clearing up, but it sticks in the back of your mind. What if it comes back? His body has been so busy trying to heal. We both get really apprehensive when we have doctor or clinic appointments, it’s like “What are they gonna find now?”
So it’s an adventure. Trying to read between the lines with the doctors. Not panicking when his picc line leaks. Trying not to think the worst with every odd grunt he makes. Living from blood test to blood test. It’s not easy.
I hope your husband recovers fully. I dream of when mine is cancer free and all this is in the rear view. I’m going to make the biggest bonfire of all the clinic reports and med supplies I have accumulated.