It's Not Breast Cancer This Time
Been a while, I know. I am now officially retired. I haven’t been to work since January 2021. It’s a very long story; I’ll share some of it here…
In December of 2020, I was diagnosed with osteosarcoma. It presented as a tumor on my scapula. Ultimately, the scapula which the tumor had invaded was removed successfully in October, but that’s another story.
No surgeons in Sioux City could perform the complicated procedure, so I had the surgery at Mayo in Minnesota.
My plan to tackle cancer
That last week in January 2021, I went to work per usual. I think it was the Friday before my first chemo, but I wouldn’t bet my car on it.
The protocol we decided on between my oncologist, the oncologist at Mayo, the ortho surgeon at Mayo, the plastics surgeon at Mayo, and myself was a chemo drug that everyone one of those doctors said was toxic but that it was my only hope.
I was to have five days of chemo, two weeks off, five days of chemo, four weeks off, then the surgery. The chemo was supposed to take place in the hospital in Sioux City.
I was feeling abandoned by everyone I knew. The weather was so miserable for months between Sioux City and Milwaukee, my daughter couldn’t get here. It was forty below with the wind chill for what seemed like days on end, and more, and always more snow.
My brain felt like a ticker-tape machine. I parked right in front of the hospital. I don’t know if it was really a parking space with all the heavy, wet, slippery snow there, but I parked anyway. I kept thinking, 'Please Lord, with everything else going on, don’t make me step on the only black ice out here and fall.'
Pulling a small travel bag on wheels behind me through that slop, with my purse and laptop on my shoulder, I made my way to the admitting desk and got checked in.
The room was as comfortable as a hospital room can be. Thank God they stopped putting two people in the same room. Perhaps an hour or so later, they started my first chemo.
Looking for support
I was trying to keep a running post on how it was going on Facebook. I didn’t know if anyone would care, but it wasn’t for them, it was to help me.
The one person I wanted to talk to desperately was Mom, but she was in a nursing home across town, and she didn’t remember me anyway. Surprisingly, lots of people responded, and it helped me feel less isolated. I hadn’t posted much I don’t think, when I posted, “…my speech is slurred, and my thinking is jumbled."
I haven’t felt this confused in 35 years; the last time I took a drink… (Facebook, Jan. 29 @ 6:15 pm.) My first dose on the 28th had gone well, I think. I don’t remember anything after that post until three or four days later when I came to the ICU.
My reaction to chemo
I knew who I was, but I didn’t know where I was or why I was there. I couldn’t understand all the bright lights shining in my eyes overhead. I wanted them to go out, so I blinked and blinked, to no avail. I was walking toward the light with all these strange faces peering down at me, looking like new moons.
"Gloria, can you squeeze my hand?" "Gloria, can you hear me?" "Gloria, welcome back!" I was all in my feelings, lying there thinking 'Welcome back?!?' 'What do you want?' 'Who the devil are you?!' But I couldn’t talk. I was intubated.
A black lady came in; I didn’t know her, but I was viscerally connected immediately. She talked to me and she was very soft-spoken; I couldn’t understand her. I heard words but they seemed as in a dream. What I remember most about her were her eyes. She had a mask on, but her eyes were so expressive; I saw love, fear, concern. But 'Who is she?' 'What did she want?'
I couldn’t stay awake; It was disorganized chaos, and I was scared all the time because the only time people would talk to me, was to bark orders. "Roll over! Sit up! Drink this! Squeeze my hand!" Many of them were rude and none too gentle. I started to feel like I had done something wrong.
Chemo side effects
The hallucinations were bizarre; I saw a huge cylinder of what looked like straw rotating right next to me. It was brown, and I thought it was somehow connected to rebooting my laptop. I needed to touch it, but every frustrating attempt was just beyond my reach. I saw wig heads come to life.
I saw my sister from a distance, but she didn’t seem to notice me. Next, she was all hugged up in bed with me sound asleep. I was worried about her, but then she was gone.
I rearranged the abstract art pieces on the wall with a swipe of my hand. Only they wouldn’t stay the way I arranged them. I thought if I could make them stay the way I arranged them, I would be well again. I tried to stand up, but my legs would not support me. Traitors.
I thought I was only out for hours, not days. It makes me sad today because I won’t be able to talk to anyone about what happened because they are reluctant to talk about it, despite my need to know. Even the doctors don’t agree on what happened. The result was that removal of the tumor was out of the question for the time being, and I couldn’t walk.
Once the tubing was removed, they started working with me to talk. I could only mumble at first. It was frustrating because I knew in my head exactly what I wanted to say. Much of the time, I was simply ignored. Or patronized.
Finding unexpected comfort
That black lady came back to see me again. I recognized her from her first visit. Most noticeably, her eyes. That same visceral connection, that same fear, love, and concern. I watched her remove her coat, and something in her movement seemed familiar. "Karen?" She said, "Yes." "Is it really you?" I asked. She took my hand and nodded her head. I was so afraid no one would come. I really didn’t expect anyone to come. Karen, my sister, came.
Have you ever changed your treatment regimen because you were experiencing side effects?