After getting home on July 9th my husband kept track of when I needed my pain medications and I slept nearly all the time the first several days. Once in awhile I would get up to walk from one room to the next but would get the chest and back pain when I was up and about for even a few minutes. I had a cold pack filled with ice water for my abdomen and a hot water bottle for my chest and back.
After the first couple of days I was managing my own pain medication but still staying on the schedule of 1-2 oxycodone every 4-6 hours and 3 advil every 6 hours. On the night of July 12th (3 days after coming home) I started getting SIGNIFICANT swelling in my abdomen, perineum, and eventually my upper thighs. It came on so suddenly that my husband called into the triage nurse to describe in detail how swollen I had become. We were told this was normal and caused by the body trying to redirect the lymph fluid. We found out later (if you read on) that mine was worse because I had been drinking so much water thinking this would help prevent me from getting a urinary tract infection. I actually gained about 15 pounds in about 3 days and this made it very difficult to walk. I could only waddle or walk like a sumo wrestler. What SAVED me was a friend and my sister telling me about "ice-pack underpants". I will do a separate post with pictures of how to make these - they worked both for the pain and like a compression device to push the lymph fluid up out of that area.
I also moved to the couch because I could turn one of the cushions around to put under my knees and keep my legs really elevated. I was more comfortable on the couch and didn't worry about waking my husband up all night with my alarm going off to remind me to take the pain medications. I had everything I might need on the large coffee table: pain meds, cell phone, books, ice pack, water, sleeping mask.
Note: I kept a document on my phone logging each time I took my pain medication and any symptoms I was having. The oxycodone especially made me a bit loopy so keeping this little log really helped keep me on track.
At about 5 days after my trachelectomy/lymphadenectomy I was able to walk around my block - really it was more like waddling but it felt good to get out of the house and then 6 days out I was able to go out to lunch with my mom. My appetite was definitely reduced for the first week or two but I was ready to get my favorite burger!
Right around this time I started getting some symptoms that weren't resolving.
1. I had gotten a rash on my upper thigh and behind that wasn't getting better with hydrocortisone and benadryl (recommended by my doctor).
2. I started noticing trace red cells in my catheter bag and having a constant sensation that I needed to urinate despite the fact I had the catheter. It felt like I had a urinary tract infection.
So we went in the Friday, 1 week after my surgery for a follow up with the nurse practitioner. After testing for bacteria in my urine (which was clear) it was decided that I had developed irritation from the catheter and it was removed after they performed a "bladder challenge". They injected enough sterile saline to give me a strong urge to urinate and then had me attempt to pee in a toilet that had a device to measure the amount of fluid. On my first try I couldn't go even though I had felt such a strong urge before they removed the catheter. I was told to drink more water and just walk around a little and was eventually able to "pass" the bladder challenge test and not have a catheter re-inserted! I was really relieved my bladder was functioning normally.
The cause of the rash was a little less clear. I was told it could be from the oxycodone or an immune response but seemed atypical since it was very localized rather than all over my body. Since it hadn't gone away with benadryl and hydrocortisone cream they switched me from oxycodone to vicodin at this visit. Rashes are relatively common on oxycodone and mine started to resolve a few days after discontinuing this medication.
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