and it continues…

Last week we met with a surgeon to discuss removal of a pouch that’s developed along Amy’s incision line. The surgeon was less interested in that benign growth than she was in the horrific number of infections and hospitalizations she had.
Everyone agreed that the fistula leaking urine into her gut is actually the more concerning issue at present. This will require another major surgery but…the surgeon isn’t sure how to do it. There a complication between tissues. One is sterile and one is not. That can’t be sewn together. A donor site will have to give tissue so it can go in the middle of the tear and hope it works.
Surgeon will consult with prior team to come up with a plan. So, now we wait. Unable to make any commitments going forward into Christmas season. We suspect it will happen quickly but who knows.

The waiting for the phone to ring is tortuous.

Amy’s energy is finally starting to improve although her nephrostomy is giving her grief. Leaking urine out of her back makes me wonder if she’ll lose that kidney. Urologist offered to remove it but she wanted to try getting it to heal.

Nurses are here almost every day. While I’m glad they monitor things it’s very disruptive to my day. I just wish we could get on with a new normal not constantly wondering if finally this will be fixed or if this will be the last of her. That’s quite a range.

Today, I hired a new therapist. I think this will work out ok. She seems nice and understands caregiver burnout and anticipatory grief.

I’m recovered from the person who was so awful to me in the summer. She accused me of playing the victim which I wasn’t but she wouldn’t listen because in actuality I am a victim. If Amy is a victim of cancer then that makes me a victim of cancer fallout. Whatever…I let her evaporate outta my life. If I see her I’ll be polite but I won’t reach out to her for support. She stopped asking about Amy many months before she blasted me. The few emails we exchanged since then she never asks how we are. Burnout I’m guessing. And while I feel bad that it’s up to her to set boundaries not me. She could have said something instead of talking about inane things that I can’t relate to.
Im no longer afraid of her and worry that I will say something wrong. No contact is the best way to go. Really how can anyone understand what’s it’s like? Our life isn’t typical and family and friends just want normal so they can cope.

how should I close this?
The world is full of colour. Choose one that sings to your 💜 heart. I know on one reads my dribble but I hope that by putting it out into the universe peace may come to me at least…and maybe you.