A lot has happened since my last post. I had a total hysterectomy (The whole factory is gone now), omenectomy, and low anterior resection of my bowel near the rectum as part of my surgical debulking on January 20th. I initially healed well from it, but ended up back in the hospital January 31st when I had bizarre urinary symptoms (I don't recommend passing gas through the urethra...) and increasing lower belly pain. The hospital was full that night, so I spent the night on an ER bed but at least my hospital's ER has little bitty private rooms. Turns out what I developed was called a colovesicle fistula, my bladder and colon were highly irritated from the surgery and decided to become best friends and 'pass notes' through my abdominal tissue and leak. Nasty nasty infection brewing!
Turns out to treat my fistula the plan was to leave in a foley catheter for an indeterminate time period and a temporary loop illeostomy to let everything in my pelvis calm down and heal. The ostomy part of the plan was initially horrifying to me, but turns out it's no big deal. The bag and care aren't as distressing as i thought they would be and it's temporary. The Foley was a giant pain, though. I can do the care, no big deal, but leg bags are insanely uncomfortable and i felt tethered by it. I ordered a fabric cover for the leg bag in hopes that it'd be more comfortable against my skin and I can't recommend them enough for anyone caught in that situation.
I was finally cleared to removed the foley after walking around with it for nearly eight weeks. They did a cystoscopy (I got to watch this time, very interesting!) and had to really really look to find where the hole used to be! This is very exciting, as the doctors kept telling me over and over how unlikely it would be that it would heal without further surgery, and that they weren't entirely sure exactly how they would fix it surgically. Possibly by putting abdominal muscle between my bladder and colon? Words cannot express how ELATED I was to walk out of that office without a catheter and not needing more surgery.
I also got to have a test called a Gastrograffin Enema. I can't recommend it, it's every bit as pleasant as it sounds, but the surgeon who did my ileostomy ordered it to ensure my bowels are healed and will tolerate eventually reversing the ostomy. I got to watch that, too, and as interesting as it was to watch peristalsis in action...I'm crossing my fingers they NEVER order a test that requires something as sadistic as a 'rectal tube' again.
Once they were sure I'd healed and had a clear pelvic exam, they cleared me to start IP (intraperitoneal) chemo. Unfortunately, when they hooked me up to start the saline pre-hydration to my IP port...well...I -leaked-. There's no pleasant way to word it, it was like Niagra Falls down below...and they initially thought I was leaking around the foley catheter they put in during IP chemo. They changed the catheter, still leaking, so hooked up some dyed saline (methylene blue, I think...very pretty color). Still leaking, so they had me insert a tampon...and...yup...plugged the leak and turned up blue. They sent down a resident (doctor in training) from my gyn/onc's office to examine me, and she saw the tip of my IP port catheter just kinda...hanging out up in there. Apparently it had eroded into the tissue there. Soooo....no IP chemo for me, I get to have that port out at any time. Back to IV taxol/carboplatin every week for nine weeks.
I got straight answers about my initial surgery since all results are back now. They found cancer in my uterus, left ovary, one lymph node (i was initially told they were clear) and some microscopic bits as well as the initial mass that had eroded into my rectum. The term 'primary peritoneal' was thrown around, lumped in with the ovarian. Stage 3B low grade serous carcinoma. My gyn/onc said "You have zero residual disease after surgery." When asked to elaborate, he said there was no cancer left that could be seen with the naked eye. I can only imagine this is a very good thing!
I'm not sleeping well. I'm a side sleeper and now my sides are taken up by accessories. With my IP port, chest port, catheter, and ostomy I had low moments where i felt less than human. Or more...cyborgy? My sister was amazing to me through all this. She's a fair bit older than I am and this mess has made us so much closer. I couldn't handle this without her support. She dropped her life for almost six weeks to come up and make sure I'm OK. My SO is long distance at the moment, but i couldn't ask for a more supportive partner in this.
Has anyone else experienced a vesico-vaginal fistula?
CAN ANYONE HELP ME ON THE FITTING OF A PORT PLEASE
Port for chemo
Chylothorax 
Here I go again on the chemo slide downhill to Christmas
