Well, I pretty much lost the month of January. What a weird way to start a new year. Hopefully, we’re now “pre-disastered” for 2022 and the rest of the year will be better.
On Friday, January 7th, I went in for surgery to remove a cancerous tumor from my lower left abdomen, a cast-off of Wilson, the grapefruit-sized tumor removed in 2019. I had my pre-op stuff to do at home around 3:00 AM, for a surgery that was supposed to start 5:45 AM. My sister Melissa and her son Brian accompanied me to the hospital but because of COVID restrictions, were unable to come in an wait with me in the pre-op area.
I don’t remember anything of the pre-op stuff, so I’m assuming they knocked me out pretty quickly. According to my oncologist, the surgery took about 4 hours, and took as long as it did because Wilson Jr. (the tumor) was tough and pretty big. (Three fingers deep on the longest part.)
The tumor was gray and “bubbly” on the surface and had grown into the psoas muscle, with tendrils wrapping into the femoral nerve and starting to move into the surrounding vascular tissues. Because it was so embedded, the doctors (my doctor and the neurosurgeon) couldn’t get it out whole, so they cut off its head and then scraped it out layer by layer. My doctor had to scrape into the muscle itself, but is pretty sure they got it all out… but she wants me to see her every 3 months or so to make sure this “Wilson Jr.” didn’t toss out any other cell-babies while he was in there.
I can remember coming out of anesthesia after the operation in excruciating pain, moaning a lot. Melissa had warned me that the doctors cutting up into my abdomen would be more painful than any pain I’d felt before, and she was right. The doctors cut me open from my pubic bone to above my belly button; the slice was over 8 inches long. Good lord, the pain!
At one point, when I woke up a bit, I asked the nurses to help me to sit up a bit more, and they jerked and lifted me up so quickly, I literally screamed in pain. My doctor was in the room when that happened, and she stepped back away from the foot of the bed, startled by the noise. The nurses kept trying to push a binder on me — a girdle-like thing to hold my belly in tight — and I told them loudly, “NO! I literally can’t breathe with that thing on!” So…thankfully, no binder.
For the first part of my stay in the hospital — which lasted from Friday to part of Monday — I was in a private room. It had a large window that looked out on the roofs of the surrounding buildings and a single little tree. I was sleeping for most of my stay, but was awakened by nurses who needed to take my vitals, or offer me food, or help me get out and back into bed. I slept with one pillow under my head and another against my right side. I told the nurses that, at home, my dog usually slept there against my right side, so it was comforting.
The hospital was offering me food like Jell-O, soup, oatmeal, and tea. I wasn’t eating much, though — no appetite and I usually vomited up what I did eat. Being able to eat and keep the food down was a milestone I had to meet before I could go home.
On Saturday, the 8th, I got a call from Melissa, checking in on me. Apparently, the hospital wasn’t answering calls or routing them correctly, because the only way I got this call was when the anesthesiologist came into my room and transferred the call to me through his cell phone. I don’t know how lucid I was, but Lissa and I chatted briefly. Later that same afternoon, a gal from Physical Therapy (PT) came to the room and gave me some tips on how to move more easily, and “logroll” out of bed. She also said she’d put in a request for a walker and bedside commode to have at home. My insurance covered the walker completely, but I had to pay a co-pay for the commode.
Around 3:00 AM on Sunday morning, an intern came in and said they needed the room for COVID patients, so he wheeled me bed-and-all to a shared room. There were three other women in the room they took me to. One was moaning loudly, “Noooo…noooo…noooo…. Ahhhh, ahhhh, ahhhh…” on and off all day. Another one of the women, was muttering repeating nonsense phrases to herself when she was awake between naps, “Yes, yes, yes, yes, b-b-b-better, better, ma-ma-ma-ma-ma…” Gad. The noise was never-ending. And the muttering woman had her television on as well. Guh! The third woman in the room with me was one who was getting ready to leave on Monday afternoon.
Somewhere in there, I thought I heard the nurses say the moaning woman was from Texas and had come in for COVID. That cinched it, in my mind. I needed to get out of the hospital as soon as possible. I might still be in a lot of pain and bed-bound, but I could do that home as easily as at the hospital. The next time I saw my doctor, late Sunday afternoon, I told he I wanted to go home. She said she wanted me to stay the night, and she’d consider my leaving on Monday afternoon, even though she wanted me to stay longer, only if I met certain criteria: (1) I had to eat and keep my meals down, (2) I had to be able to walk up and down the hall with the walker, and (3) I had to be able to pass gas, and (4) urinate without a catheter, and I had to get my blood ox up over 90. I was determined to meet those criteria.
Apparently, they’d had some trouble getting and keeping my oxygen level up over 90, so I was on supplemental oxygen. Part of the reason for that, I’m sure, was because my whole torso hurt from the surgery and it was hard to take in deep breaths. Once I realized that oxygenation was an issue that might keep me in the hospital, I made sure to take in as many deep breaths as I could — especially right before a pulse-ox measurement was taken.
On Monday morning, the 10th, the catheter was removed and I was able to walk to the bathroom and pee with the walker. I was told to order a full lunch, eat as much of it as I could, and keep it down. So, I ordered tomato soup, a sliced orange, small slice of angel food cake, and some tuna salad. The tomato soup was the best I’d ever eaten, so, I ate the whole cup of it. The tuna salad tasted okay but was pulverized down to a paste; not to pleasing on the tongue. I only ate a few slices of the orange and took some bites of the cake… But I made sure I kept it all down.
In the afternoon, the nurses told me that my doctor was releasing me to go home. Yay! Melissa and Brian were waiting outside in the car in the pick-area, and a male nurse rolled me out to them in a wheelchair. Brian was driving, but I didn’t think anything of it. He also helped me get myself into bed once we got home (around 3:15 PM). Then I kind of collapsed for the day.
The next several days into-weeks were kind of a blur between trying to sleep, using the bedside commode for potty when I couldn’t make to the bathroom, dealing with the pain of the surgery, and barely eating. I lost about 10 pounds (but I’m sure I’ll gain it back eventually). I also had to teach myself how to walk again, and start to work myself up to being able to get into and out of a car, use the treadmill, and walk on the sidewalk and lawns…
Brian was a fantastic help through all of that. He’d listen for the sound of the walker and then get to my side before I could even say anything. He helped me get into and out of bed, and rearranged the blankets for me; he’d bring my meals to me at the kitchen table or to the little table on the back porch… On the 15th I tried to take a shower and almost fell over from exhaustion within about 2 minutes. Had to have Brian turn off the water for me; I just couldn’t stand up anymore. And then he helped me back to bed before I collapsed entirely.
Brian also bought some in-home COVID tests for us to take, to make sure everyone was safe (after both Melissa and I had been exposed to strangers in the hospital). We tested negative, as expected, but it was a relief to know for sure.
On the 16th, I got Brian to pull some mushrooms up from the woodchips in the backyard at lunchtime, so I could do my naturalist thing. He was sooooo accommodating.
On that same day, he helped Melissa set up some wire fencing to go along the street-side fence in the backyard. That part of the fence is falling apart and Melissa wanted it reinforced a little to keep the dogs from getting through it to the street.
On the 18th, a gentleman came to the house from Advanced Home Health and did an assessment of me for at-home physical therapy. After the assessment, he said I was eligible for four sessions (one per week for four weeks) that would be no cost to me; Kaiser would pay for them as part of my post-op care. I’ll hear from someone next week to set those sessions up.
On the 20th I had a Zoom appointment with my doctor. She thought I was doing remarkably well, all things considered, and was glad to hear I was able to get off the opiate pain killers and manage on just Ibuprofen and Gabapentin. We talked about the surgery itself, and about the fact that part of my psoas muscle was now gone… But both of us were happy that the surgery seemed to correct the nerve pain I was feeling in my left hip and thigh. The thigh still “buzzes” a little bit, but otherwise doesn’t hurt. Yay! I’m looking forward to being able to walk more normally again. I’ll see my doctor again on the 27th when I get the staples out.
This same afternoon, I got a call from the office of my GP. She said the in-home health assessment showed my blood pressure and heart rate were too high, so she’s prescribed Lisinopril for that. I’m supposed to take one pill a day and track my BP and pulse every day to see if there’s any improvement. I’ve been in pain for so long, I think my body got used to being “tensed” all the time…
I’m in less pain now than I have been in a long time, but still too uncomfortable to wear a full set of normal clothes. I spend my days in nightgowns and slippers. My friend Roxanne said she doesn’t care if I’m in a nightie; we could go somewhere where I wouldn’t have to get out of the car — look at nature through the car windows. Hah! That’s actually pretty tempting! I miss my nature walks sooooo much!
My target is to be back outside, fully dressed and walking, by mid-February. We’ll see. Wish me luck.