Taking it how it comes post-EPOCH chemo

The first few days of the 22 hour a day chemo regime wasn't too bad. The 2nd night my port came completely out when I turned over in bed so there was something of a 4am fire drill. It's not safe for the nurses to be exposed to the spilled chemo drugs and they were worried my skin might blister. The last night, my IV alarm went off ever 10 - 15 minutes, literally, because of air in the tubes. By the 5th day, I felt I was coming out of my skin. 

How in the world could I manage a 5 week stay for a bone marrow transplant? I've had a social worker and psychologist come visit me in the hospital "to help me prepare for it." Much more on that later.

The morning after I went home, my feet and hands started to itch terribly. I used a prescription cream and thought I overdid it as the areas turned red/purple and angry and are so so so itchy. It continues today, 4 days later.

 

The nausea is pretty well controlled by medications. Lots and lots of medications. I'm in their world now and just have to go with it. 

The day after I got home, I had an appointment with my regular oncologist. We went to that. She said a very kind thing. She said she thought I have handled this just right. We will never know, but from someone who urged me into this route for years, as she watched me live a pretty normal, healthy life, it meant something to me. 

I will have labs twice a week in her office and see her or her PA every other week. I will go in for B-CHP they call it (I'll look up the details of that later) every 21 days starting August 2. I should do 5 rounds of that and then they will evaluate with a PET scan. I should also get a PET scan 1/ 2 through all that to evaluate. I can already tell the lymph nodes are shrinking. 

I won't go into all the details but I had one of my hardest days after we went to see the oncologist. They called to tell me the nurse forgot to give me a very important shot, which has to be given within 72 hours of chemo, so I needed to get back up to Aurora, during traffic. My poor hubby and chauffeur had already taken his brother up to the airport near the hospital. We loaded up and set out but out of nowhere my 2019 Honda Pilot broke down in the fast lane in 4:00pm traffic. 

I felt lousy. It was very very hot. And we were stuck. And my appointment was in 45 minutes. 

A really nice guy came and helped up push the car into the center median. I was on the phone with AAA so we had to close the windows so it was so so hot in the car. We felt very unsafe as it wasn't a full median. We finally got in touch with a tow truck driver; giving him our location was a challenge. It all felt like an unsurmountable problem. 

I called the doctors office which was closed. I called the afterhours number and it took stressful minutes to finally get an answer. We got a tow and I then I took a Lift to the hospital where the nurse who made the mistake met me at 6:20pm to give me the shot. She felt terrible, of course. I told her I am as human as people come and that she needs to forgive herself. Unfortunately she's being written up for this oversight. Another nurse discovered the mistake. By the time we got home, I was in-pain tired. 

Anyhow, I still just have to lay down a lot. It is unnerving to me how long this is going on. I got up and took a shower this morning, hoping I would be able to keep going. 

No luck. I am pushing myself to do this and eat and then I'll be down again. My brain isn't up for anything more than stupid TV. 

I'm grateful the nausea is under control. One of those meds helps me sleep well through the night. I have moments with the feeling of panic and have to control my thoughts and remember that step by step, I am not alone.