A Grimoire

I went food shopping for the first time in a year. We’d been using Instacart and DoorDash and other delivery services.

Unfortunately, I’m in a wheelchair now. I can no longer stand on my own. Even with a walker, I teeter back and forth. At first, I went through the store in the wheelchair without feet, but my legs were at the bottom of a cart. I felt like I was driving an 18-wheeler through narrow streets. And it was busy!

Two weeks later, my son and I went to another supermarket. Not as busy, but this time I was able to use the scooter that the store provided. It took me two accidents to finally get a hang of the thing. I realized a few things while sitting in the scooter, trying to shop.

1. Nothing is easy to get.
   Opening doors in the frozen food aisle is impossible. Buying meat is almost as bad, especially if you want the stuff high up. Forget getting two-liter soda bottles above your head. Bring someone to help.
   
2. Eye level items when you’re sitting down is the most expensive.
   I know that it’s a marketing scheme, as that’s kid’s eye level. I have to look way up, or way down.
   
3. Aisles are too narrow.
   I crashed into two set-ups because the turns were not tight enough. When I go in an aisle to get one thing, my choice is to continue up the aisle instead of turning around. Which takes longer to shop.
   
4. Checking out is a nightmare.
   Some stores can’t detach the card reader. It’s hard to negotiate the cart, the scooter, and the bags. And packing the car…I was worthless. I just sat there while my son and my driver loaded up the car.

Throughout, I felt like I couldn’t get anything without help. How can people live this way? And now that there’s snow everywhere, I can’t use the sidewalks. Not that I go anywhere much anymore. Though when spring comes, I hope to go outside for some sun.

This week, we’re going to a sushi buffet restaurant. My son is going to have to make plates for me and I hope they have something for a handicapped woman to sit at. Yup, I’m going to rate places based on their handicapped-accessability. Something new, maybe I can monetize it.

The tumor is benign. They said it’s adrenal cells growing so close to the liver that it looks like it’s on the liver. It’s not cancerous.

What a relief.

Got the report back. The lesion itself is benign. However the surrounding cells are cancerous, specifically adrenal cancer cells. Of all things! I am supposed to see the doctor on the 16th, and hopefully will get clarification then.

I read this book on Kindle. Even with the images, I could read and understand the story.

It was great. I loved Pip (what a name???) and was glad, but the ending was bad. I won’t spoil it except to say it seemed improbable, even after the confessions.

Pip is a senior in Fairview High School, doing her capstone project on the murder of Andie Bell and trying to find Sal Singh innocent of the crime. So many spiderwebs and connections, stories of murder, rape, and drugs. So many “This person did it, no this one…” It was a fun trip. I thought it was an abusive father, but it wasn’t (I’m not glad about it). If you go down that road, it’s the wrong one!

I have surrendered.

I bought earpods for my phone (not Apple Airpods–too cheap for that!). My kid, since almost birth, has had phones in his ears, listening to music and podcasts. I gave up and decided to try to listen to music during downtimes, and while waiting for…whatever. It was hard the first day, and I ended up falling asleep, losing half an hour of the below audiobook. It was during dialysis, so that happens often.

While wearing the headphones, it felt weird–and rude. I was listening to the music or spoken word in one ear, and not hearing everything going on with the other. How can my son do this without being rude? I guess it takes practice.

I started Norse Mythology over two years ago and dipped into it here and there. It wasn’t bad. Pretty flat. I knew some of the stories, but not the cross-dressing Thor. Did Marvel do that? They should.

I am going to try it again tomorrow, again at dialysis, both going to and from and waiting for the rides.

Today I had a CT scan. Wednesday, February 6, I had the biopsy. The PA said the results may be available next week. The “lesion” (aka tumor) on my liver is near my lung, so I had to lie on my side for the procedure. It felt like they thrust a spatula into my side and dug out the tissue. I had to get three x-rays of my lungs to make sure the PA didn’t nick it while digging at my liver. Fun times.

Biopsy is slated for Wednesday, February 4 and CT Scans Friday, February 6. My expectations are that the biopsy will show renal carcinoma, and the CT scans are negative.

I am dumping my BFF of 40+ years. First of all, she thinks she knows me. I’ve changed over the years. My favorite band is not The Police. It was when I was in high school. My favorite color is not black any more. She has no idea what I am now.
Secondly, she is not supportive. She is homebound because she is afraid of going out and falling. And her idea of support is telling me about all the people she knows who died of cancer, including her father. He had colon cancer that spread to his liver, and he was gone in three months after diagnosis.
Like I needed to hear that.
So I’m walking around with a big red “C” on my forehead, thinking I’ll die in three months. Because of that, I’m scared. Petrified. I don’t have my life in order! I don’t have a will. Nobody knows my wishes.
It’s all her fault for putting this in my head.

It seems I don’t have liver cancer. My kidney cancer has come back and attacked my liver. So technically, it’s not liver cancer? I always thought cancer is cancer and whatever organ it’s in is that kind of cancer. Seems there are different specialties and the oncologist I saw specializes in liver cancer.

Anyway, the next steps are a biopsy of the mass on my liver to find out if it is the kidney cancer come back, and a CT scan of the chest and pelvis just to be sure it’s not all over the place. Based on recent–within a year–images, it’s not everywhere, just localized in my liver, which is good. There’s a lot of new treatments, the oncologist said, like targeted therapies, but we’re not going to talk about that until the biopsy is done. That will probably be late this week, early next. Mother Nature has thrown a spanner in the works because of the winter storm, so everything will probably be off a couple of days.

My last post went off on my poor son. He’s a “prince” as a good friend called him. He’s been helpful, kind, and makes me laugh. He’s been morbid, talking about how he’s going to tell off my “BFF” and what he’s going to wear (his version of cosplay) at my funeral. I hope he doesn’t get forced into a suit. Anyway, he’s been the best anyone could ask for.

So now it’s a waiting game. Waiting for the appointments, waiting for results, waiting on doctors. Need to advocate for myself and be a squeaky wheel, which I’m not used to being.

I went for an MRI of my liver on January 16. I got the results via the portal on Sunday. “Consistent with metastazised disease.” Doctor-speak for cancer. This is the second time for me; the first being kidney cancer in 2008, when my right kidney got removed. Now it’s back in the liver. I don’t know if it’s operable–I’m waiting for my PCP to give me a call with the official diagnosis and next steps.

I haven’t told my kid, who is dealing with his own issues of having seizures in public places (he doesn’t want to go out and end up in the hospital if he has a seizure, so he prefers to be homebound). He approaches me at 4 this morning saying he doesn’t think he should go with me to the doctor’s today because he had a “mild” seizure last night. He wants me to change the appointment. I already have. Twice because of him being scared. I refuse to change appointments anymore because of him. I can get around in my wheelchair without him.

Yes, I’m in a wheelchair when I go out. I fell once and the drivers don’t want the liability of me transferring into a vehicle (even though I can do it) so now I have to take a wheelchair van to doctor and dialysis appointments. I can Uber/Lyft in a pinch, but not with the big wheelchair. I have a transport wheelchair for in case of that reason. It’s a smaller wheelchair and fits in the trunk. But I have to be pushed in it. The big sheelchair I can push myself. Slowly, but I can.

I want to remain as independent as possible. If chemo is warranted, then I’ll have no time to do anything other than dialysis and chemo. No time for fun or even doctors’ appointments.

But then, I may not have to worry about it.

So, I thought I’d be honest with the government and tell them that my utility bills have nearly tripled since I was in rehab. All of them. I went on our Medicaid website and updated my bills, which hadn’t been touched since 2023.
What a cascade of errors.

This caused them to send me a questionnaire. “Are you on LTSS?” I took that to mean “Long Term Something Service” which meant to me, rehab. So I said no.

Three days later I get a notice I’m being booted off of Medicaid.
Panic ensues.

Trying to get through to Department of Human Services is like trying get Taylor Swift tickets. On hold for 2 hours, to find out that LTSS means Long Term Social Services, such as dialysis. Ohhhhh, I said. Ohhhh, she said, “We’ll fix this.”

I get another note. “Please provide documentation from your application dated 4/2023”. I did this already! Call them again. Talk to the same person. “You’re okay,” she said. “The whole thing is automated.” Lovely AI from the 1950’s. Our state Medicaid was notoriously breached three years ago and they supposedly overhauled the computer system. Not.

Anyway, it’s all cleared up now. But by the Gods, it was scary. I was calculating Uber and Lyft costs to dialysis ($150 a week) on my disability income since I have no car. Medicaid Ride Share is notorious as well–I hear it’s like that all across the country. We take the Ride Share to appointments, and sometimes Uber home because it can take upwards of an hour to get back. Yesterday, I got out of dialysis at 2:30. I didn’t get home until 5.

So that’s my complaint for the week. Medicaid is helpful in keeping you in your home, but you have to be patient.