A Grimoire

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.

2025 sucked. In a really big way. Back surgery, rehab, can’t walk without falling…it’s bad.
My son visited me in rehab every two weeks. My dad came up from Florida to visit. I made a few friends (some I didn’t want) in rehab. I found out what nursing homes are like, and that I don’t want to go there.

My writing suffered. I wrote a lot in my journal, but did nothing on my work in progress, Blood Relations (a memoir about dialysis). I did a lot of work for my publisher, mostly editing, slush reading, and other project management. I played a little of City of Heroes/Villains (CoX) but always solo. This from September until now.

Mental health is spotty. Some days I’m ready to fight, and other days, I binge drink (water or Ice drinks) or binge eat because I feel why bother. One thing last year is I found out how it is to lose a lot of weight, but it was too much. I felt all my bones. The weight I’m at right now is perfect (though not at dialysis–they want me back to what I was when I was in rehab).

What are my goals in 2026? Manage money better. Stay out of rehab! Get a haircut. Utilize Uber/Lyft/non-emergency transportation companies more effectively. And write a little every day, 200 words or so, even if they’re just worthless throw-away prompts. Journal in the morning a la “Artist’s Way”. Communicate more clearly. Sleep more at night.

Here’s to a better year.

In April, I went into rehab because I fell three times in one day.

In May 2025, I had three emergency back surgeries. It was agony.

I went into rehab at a nursing home. One place for four months, and they tried to kill me three times. First time was I had an infection in my bones after they removed my drain. I bled everywhere and had pus coming out of my wounds. “Oh, you’re doing fine,” they said, and finally the NP sent me to the hospital.

Second time I was thrown out of bed. Third time, I couldn’t breathe and asked to go to the hospital from Friday to Sunday morning. Finally they sent me. Come to find out, I had the flu and pneumonia.

No, I was not going back there. I picked a different one, but it was part of the larger corporation. So it’s not like I got a new one. But this place had dialysis in house, so I didn’t have to get treated like an Amazon package in the back of an ambulance.

At the first nursing home I was bedridden for two months. I forced myself to get up and in the wheelchair on my own. They were mad at me, but I wanted to go home. When I got to the second nursing home, I told them I was not a hoyer lift, and I used the walker and wheelchair to get around. Wheelchairs are so convenient. I decided to get one for home.

Anyway, I got home September 16. I lost so much weight that my clothes hang off me. My son didn’t do any cleaning, so I walked in just as I left it. Everything was frozen in time, April 11, 2025.

Now I’m home. I can barely walk, but I don’t care. I can’t get up the stairs without help. My son has to pick me up the stairs (good thing I lost weight, huh?). I have to walk through paths in my cluttered home. I gave up impressing people: PT, OT, nurses of all kinds come into my house now.

I’m back to editing and working for The Publisher a couple of hours a day, in between visitations. And you know what? No one from my family came to visit or call me, except my father, who drove up all the way from Florida. They’re not allowed at my funeral or the luncheon afterward. I will not forget or forgive.

I’ll try and update this a little more often. Not that anyone is listening.

It’s pretty sad. I haven’t written a story in 2 years. Since doing work for The Publisher, all my creative abilities have gone to editing, graphic design, producing newsletters, and creative social media.

It’s not like I don’t have time. Ten hours a week for The Publisher, eighteen hours a week for dialysis, maybe another five or six hours a week for doctor’s visits. I just don’t have the gumption.

I started playing on CoH again, but on the gamer’s servers. Indomitable is good solo. Everlasting is good for RP and teams. Excelsior is for the hard core farmers and gamers.

Maybe I’ll get inspired there again. I’m not looking for it.

OMG. For two weeks, I was sick as a dog. All because of this fantastic new diabetes/weight loss medication. From Thursday to Sunday: vomiting, sick stomach, headaches, and all around weakness and fatigue. Thank goodness I don’t have to work a day job.

I’m seeing the endocrinologist tomorrow and I think I will ask for a lesser dose. I’m on 15 now. I can go down to 12.5 and work with that. But the good news is that I have only 4.4 lbs to go before I get on the transplant list! Left dialysis yesterday at 102. If I wasn’t so sick, I would have celebrated.

I’m afraid, though. What if I get a transplant? Then I have to look for a job. At 59 years old. No one will hire me except as a Wal-mart greeter or a bagger at Stop and Shop. I could try and freelance my editing credentials. Or social media. I think I’d love to do that.

I feel much better today after a restless sleep and I just had half an Eggo waffle. The nutritionist and nurses at dialysis gave me pointers on how to eat with it. Basically, half of what I used to eat, maybe even less; and stop eating to see if that satisfies me. That’s so tough. But from now on, no dinner meals (maybe small stuff) on Thursday and Friday because I take Mounjaro on Wednesday, and it obviously doesn’t kick in until the next day.

Now, then. As for writing? I started preparing some characters for a fantasy novel, and that’s as far as I got. I have a lot of copywriting work to do for Paper Angel and Water Dragon. We have three months to get caught up before submissions open up again. I have to do time-management organization for December today. And get caught up!