It’s been just over 4 months since we found out Joanna has cancer. Rhabdomyosarcoma to be exact.
I have no idea how many times in all these weeks I’ve thought “this is the hardest (fill in the blank) yet.”
Today has been one of those hard days. It started with some anti-nausea meds. The hourly throwing up that started 6 days ago and finally stopped yesterday still has us trying to get ahead of it.
Next we had another fish to bury. Sunburst didn’t wake up today.
Playing a game with beads that needed moved highlighted the loss of control that is coming and going in one of her hands. This is a known side effect of one of the chemo drugs.
At lunch the mouth sores and sore throat (hurts to swallow) kicked in. This is in addition to the dryness/tightness/discomfort from her lips getting dried out.
Then on the way to radiation we figured out her stuffed bear that has been with her to each radiation appointment was not in the car with us. That one resulted in tears.
Oh, it keeps coming… Something was different during radiation, so she felt the machine pressing on her. That had not happened the previous 4 times. The technicians are super-concerned that her face is in the same position each time so that the radiation beams hit the same, correct place. But, if her shoulders are a little different (like that when she didn’t have her bear to hug) that doesn’t effect the part that matters.
So, while alone on the table she felt (but couldn’t see because of the mask/position) part of the machine on her shoulder and chest. She didn’t think to wave to get the attention of the staff to correct it. In her mind that is for an emergency, like if she started to throw up, which had been a real possibly so far. So, she just endured it. Thankfully this happened on the day she saw her doctor there and he was able to understand what she was explaining and helped her know what had happened and what to do if it happens again.
Reunited with her bear while getting ready for bed she burst into tears when I mentioned we’d be going to JEC tomorrow since it’s Wednesday. That’s where she gets chemo. She choked out “I don’t want to start barfing again”.
It is heartbreaking to hold her as she cries about all these tough things.
We tried drying up our tears and listing a couple good things that had happened today. Our quick list ended up being much longer than she anticipated. Hopefully ending on that good note provided a little peace.
This schedule of daily radiation and weekly chemo is alot. Also, besides all that, to try to protect her skin, teeth, and mouth she is having to wash and moisturize her face multiple times a day. Doing all that plus taking the at-home meds is feeling exhausting. She is having to find energy to do unwanted things in an effort to lessen likely side effects. I hate all this.