“Are You Okay?”

I’m so tired lately. Yesterday was another “couch” day, as was today. I slept today for about six hours. That just doesn’t seem normal. I mean, that’s not a nap, that’s a whole night’s worth of sleep. I don’t feel bad or sick, although today I felt a little more shaky than I have lately. I’m thinking maybe it’s due to the extra steroids I have to take on Wednesdays. 36 mg, plus the 10 of my daily prednisone. I’m going to try to keep better track of when I’m feeling punky like this and see if there’s any pattern to it.

I got my fifth chemo shot Wednesday; so far no issues with neuropathy effects, so that’s good. My hemoglobin was back in the 8s, unfortunately, so that could be contributing to my feeling wiped out. Another shot of Aranesp. (And since the new year has begun, I’m sure I’ll be getting a bill soon for $111.00!)

I got a message from my PA doc, asking how I’m doing. She must not have received the long message I sent her with several questions in it. She was out on leave and another doctor answered one of my questions, so I think the rest just never made it her way. I’ll have to forward it to her again. One of the questions is what’s the taper down plan for this prednisone?? I’ve been on the 10 mg for about six weeks now. Time to start dropping that down, at least in my mind. We’ll see.

Blood pressure’s still sky high, even though the fill-in doc upped one of my BP meds… again. It’s just not working. These meds they have me on are NOT working. I have relayed this info over and over but no one but me seems to be concerned.  This really frustrates me. 

My eyes are still very swollen when I wake up. I can feel it immediately.  When they’re REALLY swollen, it’s like there’s just no definition in my face. There’s no separation of my features. It’s all just FACE.  And it makes my eyes so heavy and tired. Sometimes I can barely keep them open. It’s all bizarre. I had been lucky that it hadn’t happened on a work day but my luck ran out this week. It was fun driving to clinic alternating ice on my eyes. Glad I have at least an hour on the road, but damn… it’s cold. I see the eye doctor Wednesday. I’m hoping he has something useful to tell me.

Earlier this week at clinic, this woman from the business office (we share the building) came in my office and closed the door. I don’t know her very well, but she’s very nice. She’s come in before with her mom, who is one of my patients. She is one of the people who does the COVID screenings of the incoming patients, so it wasn’t unusual that she would pop in my office to tell me my patient had arrived. But it was odd that she would come in and close the door.

“Are you okay?” she asked me.

I wasn’t exactly sure what she was referring to, so I think I just looked at her.

She said, “I walked by earlier and you were on the phone and you didn’t have your mask on. [Patients can’t understand me over the phone when I have my mask on.]  You look very different.  You don’t look like yourself.”

I told her what was going on with the kidney disease, the chemo, and the medication that has completely changed my face. She was very kind and told me how sorry she was to hear what I was dealing with. She also said, “I won’t mention it to anyone,” but I assured her it wasn’t a secret. I don’t talk about it much at work because everyone’s already got their own problems.

I didn’t mind her asking me about it at all. But it was just discouraging to know how much I don’t look like myself anymore. I mean I know I’ve been bitching about this for months, so it’s not like it’s new, but it’s the first time someone’s mentioned it to me. Then again, it’s probably the first time someone outside my family has seen me without my mask on.  It’s just a really odd thing.

Some good news: my blood sugar has FINALLY come back down approaching normal. I didn’t think it would.  It had been over 300, close to 400, after the huge steroid infusion, but my weekly blood work showed that little by little, it was dropping. The last set of labs on 12/31 showed it at 126, and it wasn’t a fasting blood sugar so that was good. One fewer pill I need to add to the mix.

The other REALLY good news is that I got my first COVID vaccine today. I tried to get it Monday at one of our Indian hospitals, but after standing outside in the cold for about 40 minutes, we were told they ran out. Nice. I was going to go back there this Monday but another Indian hospital was doing a vaccine clinic this weekend. Even though it was an hour’s drive, I went ahead and hit the road.  I wasn’t 100% convinced it wouldn’t be another shit show, but it was surprisingly well-organized and quick! I was in and out of there in about 30 minutes. I feel a little less vulnerable now, having gotten this first dose under my belt.

Hemoglobin: 8.7

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