Everyone tells me that these procedures are routine, no big deal. I was told this just yesterday by a friend of mine minutes before I went into surgery for the port placement.
Here’s what a “routine”, “no big deal” procedure looks like. I’ll start from the beginning.
My tumor has invaded my pelvis and, I was told, is attached to my bladder. We traveled hours to get to our hotel near the hospital on Thursday and, before we arrived, I experienced excruciating pain in my pelvis. It felt like my hip bones were being pulled apart. I could not tell if I had to go to the bathroom but I thought that maybe I did. We were in the middle of nowhere and public restrooms are a bad idea anyway given the pandemic. So I did something I’ve never done. I took out a plastic bag and crouched behind the passenger seat to see if I could “go.” I did. The pressure between my hip bones was immediately relieved. This is my life now.
It was very upsetting because it caused me to suspect that the tumor has grown while I’ve been recuperating from the colostomy and is now much worse.
We arrived at the hotel and checked in. I tried to eat something but felt nauseous and threw it out. A friend called to wish me luck. Then we went to bed. I was freezing and brought a blanket from the car into the room. I woke up during the night several times drenched in sweat. It was like I had a short-term fever that broke overnight. Maybe I did.
The next morning, I went to the hospital for my CT scan – pelvis, abdomen and chest. I met an old friend from college whom I haven’t seen in decades – he kept me company while I was waiting to be called for the port placement. I have changed quite a lot in the intervening decades but the changes are internal, not external. I’m sure I seemed just the same as I was all those years ago. When I was young, I was attracted to extroverts – which I am most definitely not – although I never really enjoyed their company. Our culture is heavily biased in favor of extroverts/big personalities and, for too many years, I internalized that bias.
I, however, am me. I like quiet, peace, beauty. Space. Always did as a child and now, once again, having returned to self. It is my nature. It’s what I need.
So he said so-long and I was called for surgery. The nurse prepped me, explaining that the biggest risk was infection so they had to thoroughly clean my chest and swab my nose with disinfectant several times to ensure that I did not have any staff bacteria.
Then the doctor performing the procedure came in and showed me the port. He explained that he was going to make a hole in my aorta and snake a tube through it to just outside my heart and the other end would be embedded in my chest. !!!!!! Oh my god. !!!!!! I asked him how he would embed it as I have no more fat and the skin is stretched across my bones. He said it was an issue and that they’ve had problems with port placements on very thin patients because the nipples on the port wear off the skin and poke through. !!!!!! So now on thin people like me they use ports without any nipples. Great.
They wheeled me into the operating room, transferred me to the operating table, and sedated me. The procedure took an hour. I woke up in recovery and stayed there for another hour. Then they fed me (egg salad sandwich and apple juice, yum, yum).
No Big Deal?!!!!
I can’t take a shower for 24 hours. I can’t lift more than 15 lbs for a week. I have to watch for infection and change my dressing daily.
And now? It has been 24 hours. I have been nauseous and now have a brand-new source of pain in my chest. All necessary steps I know – and I’m lucky to be able to take them – but I still don’t think of myself as a sick person so I’m sort of fighting/rejecting this new reality.
We drove home today – bumpy, bumpy. Nauseous and exhausted. Chemo starts in 48 hours. I can’t imagine …