Oy! What a Month I've Had

I thought it was the flu.

All the symptoms but fever had been pestering me for more than a week. Every cough led to a gagging fit, which unsettled my stomach. Same with certain smells.  I had barf bags available everywhere – bedside, chair side, bathroom, next to the kitchen, and used many of them. I ate nothing but dry crackers, drank nothing but water and tea.

In the third week, my hospice social worker wondered out loud where I might have picked up the flu, given I hadn’t left my condo for nearly a month. None of the hospice team who visit me regularly had had the flu. Oh. Right. What else could this be then?

Was I simply so hungry that I was confusing the sensation of hunger for the sense of nausea? How long can one live off crackers?

I dared to order some chicken fried rice. The portion that arrived was so large it lasted for 4 meals. The nausea decreased some, but lurked in the background, waiting for another chance to be expressed, even if only with stomach acid. I was reminded that this was what I had experienced the last time I was pregnant.

Back to crackers I went.

At some point I had a day with enough shortness of breath, and some persistent body aches that I decided to take one 5 mg tablet of oxycodone, a narcotic I’d been pressured into having on hand even though I wasn’t taking it. And it did indeed remedy the shortness of breath and body aches for about 18 hours.

Then the oxy side effects kicked in. Or what I thought were side effects, which oddly were nearly identical to flu symptoms. I felt worse. And the coughing and nausea continued. I was sliding into the fourth week still feeling crummy, still dining on crackers and tea.

One of the hospice team noted very gently that persistent nausea can be a sign that I’m entering another phase of the journey to the Summerland. Having outlived my prognosis twice – the oncologist saying I had 6 months to live back in January 2025 – I wasn’t too surprised.

And yet, it seems there is a lot of guessing going on. Hospice doesn’t do labs or CT scans to determine the status of decline in terminal patients. No one knows what’s really going on to be causing all this gagging and nausea. The focus is on drugging me up to “manage symptoms”.

I’m resistant. I’ve researched the efficacy, interactions, and side effects with natural supplements for all the pharmaceuticals suggested.

If you need to do similar research, don’t just Google. Check out credible sources such as the Mayo Clinic, the Cleveland Clinic, MD Anderson, Sloan Kettering, etc. I’m not relying on the NIH or CDC these days, either.

Pharmaceuticals used by hospice tend to mask symptoms but don’t change anything about underlying conditions. And the side effects all are noted as damaging to the liver, which in my case is already compromised. How is that good for me?

I’d have to be dying for sure to take that poison on a daily basis.

The goal now is to maintain as well as possible my quality of life. That includes cognitive functioning, and having energy enough to take care of myself on a basic level.

Meanwhile, today I had a burger and fries. So far, so good. I may try eggs this weekend.

And Then There’s the Eye Issue

About two months ago I noticed a large black spot in the field of vision in my right eye. The spot was really only noticeable in a darkened room with just a nightlight. I didn’t notice it at all in a lighted room – until I tried closing my left eye and reading the chyron scrolling across the TV screen. The text got all wavy like it was on the high seas in a storm.

My regular optometrist referred me to a cataract and laser clinic for evaluation. The black spot was possibly schmutz that had gotten under the lens implanted during cataract surgery a few years ago. They’ll just clean out the dirt with a laser, he said, no big deal.

The cataract and laser clinic had a different determination. The implant seemed fine. The problem was advancing macular degeneration.

The optometrist had been monitoring the dry macular degeneration (that’s the “good” kind, he said) for a few years. My bio mom had had this, so it lived in the back of my mind as a kind of abstract potential for me. But she had gone blind from it. That is definitely not part of my quality of life plan.

Since laser treatment is not recommended for macular degeneration, clinic #1 referred me to clinic #2. My appointment there was 10 days later.

Turns out the advancement of my macular degeneration has gone from dry to wet. A pocket of fluid showed up on one of their scans. The treatment was an injection – two, really, if we count the preliminary numbing shot before administering the Avastin.

Look down and to the left, the ophthalmologist instructed as she dropped initial medicine in my eye before using the first needle. Despite her attempt to have me focused elsewhere, I saw the needle coming at me in peripheral vision. I took a deep breath and steeled myself to be physically still and psychically allowing. The jab initially stung a little, and I really wanted to rub my eye, but wasn’t allowed to.

Afterwards I realized I’d been gripping my wrist super hard as if that would prevent feeling any discomfort. It worked long enough for the second injection to be given. Somehow I didn’t see or feel that one.

I can’t recall now if it was before the second shot or after that she flushed my eye with what seemed a quart of water, which ran down my face and soaked my turtleneck. On the way home, I began to feel some slight pain and like there was gravel in my eye. That sensation lasted about 24 hours. I kept my right eye closed most of that time.

Treatment for wet macular degeneration is typically done as a series of injections. I go back in 4 weeks, and maybe 4-8 weeks after that.  

So it’s been quite a month. But hey, I’m safe, warm, have my sense of humor, and am grateful to still perceive the absurdities of life as I ease on down, ease on down the road.