05/22/24 Probably the worst Wednesday of my life

Randy is temporarily done with chemo treatments and we just spent 3 days at Shands Hospital in Gainesville. 

Tuesday Randy had a PET scan, a Transplant Education and Consent Class, a Finance Counselor meeting, and a Chest X-ray. We were assigned a Coordinator to act as an intermediary between us and everyone else in the hospital, but she didn’t know what to do, what she was talking about, or how to communicate clearly. I had to run around between floors and buildings to (finally!) deliver Randy’s 24 hour urine specimen to a different location while he was having his PET scan. During the education session where she was telling us what would occur, her supervisor had to keep correcting her. Randy was her first patient as a Coordinator which should not be a problem but she really didn’t know what she was doing.

Wednesday Randy had a Dental screening at 8 am but we learned his appointment had not been scheduled! The nice lady at the desk called a dentist into the office to work on Randy. The dentist said Randy’s teeth looked good but he should have a cleaning asap because he cannot have dental work for 1 year after the transplant. (Fortunately we were able to set up a cleaning for Randy with his regular dentist next week.)

At this point I was done with our Coordinator. This is about Randy’s life and I did not want a Coordinator who needed someone babysitting her. The head of the Coordinator department was very helpful and switched us to an experienced Coordinator. 

Next we went to Physical Therapy where they gave Randy a series of tests. On the timed walking test he received 105% rating; he walks between 8,000 and 10,000 steps every day so that part was easy!

Then we went to Occupational Therapy, where they look at test cognitive skills to determine the effect of chemo. Randy did well here too and got rating of 100 - he did better than people who have not had chemo.

His last event of the day was a Bone Marrow Biopsy on his left hip. Randy had one a couple of months ago so he knows how much it hurts. They not only took a sample of the bone marrow, they also took a bit of the bone for additional testing. 

Then we were done for the day so we drove a couple of miles to Carvels for ice cream. When we arrived and Randy got out of the truck, he suddenly had terrible pain down his left leg. We got ice cream anyway and hoped it would subside but afterwards it was impossible for him to walk the very short distance back to the truck. So I pulled the truck up to the door for him and headed for the ER. On the way I called the Bone Marrow clinic hot line, who agreed we should go to the ER. When we got there I ran inside to get a wheelchair. By the way, thank God for their great valet system, I just gave my keys to the guy and let him take care of it. 

The ER was busy so they checked him in and moved him to a nearby cancer waiting area to be away from sick people (we are still being very protective of his health). After a short time Randy said he was getting worse - he seemed less aware of what was going on (later he told me that things become fuzzy and he blacked out). He slumped in the wheelchair and didn’t respond to my voice or touch. I ran back to ER and raised a stink, crying that my husband was dying (I honestly thought he was!). They quickly took him to a room, put in an IV, drew blood and tried to figure out what happened. He remembers being asked questions but he doesn’t remember anything else. He was given pain medication and more tests.

After 4 hours of tests, conversations with doctors, and drugs, his pain was under control so he was released. I drove us back to the hotel but we didn’t get much sleep.