Tag Archives: side effects

The Situation, 7/26/15

The Summary.
Glasses are in. Betty’s being a pain. Maybe.

The Details.
Sorry it’s been a while since my last post. There’s been nothing much to write about. Last Tuesday I got my third dose of the Kill Betty Juice, so there’s only one more to go! (For Phase 1 of the study, that is. Whether I move to Phase 2 depends on how well Phase 1 works.)

Is it working? I really don’t know. Signs had been pointing to yes, but some pain has started returning this last week–around the ear, in the ear, up my skull, and down into my jaw. Those nerves are all connected, which makes pinpointing the source difficult. It’s hard to say whether it’s Betty’s signature pain, as well, because I think some of the pain that I had once assumed was Betty pain, was actually being caused by something else (that lump below my ear, which was probably either a cyst or an infection). My current pain is similar to that pain and to some Betty-style pain, mostly at the spot where my glasses rest on my ear. It’s very mild, for the moment at least.

My eyes are still wonky too. I can’t focus my left eye while wearing contacts anymore, and wearing contacts also exacerbates the redness. So for now, it’s glasses everyday for me. Neither the ophthalmologists I saw, nor my cancer doc, are too concerned as everything else about my eyes appears fine.

The holding pattern continues. Any other side effects have been mild. I’m going to mention the pain to my local doc this week, but I’m guessing nothing is going to come of it until I get new scans at the end of August.

The Situation, 7/1/15

The Summary.
The eyes have it. Another reason to be hopeful. And it was another looooong day in Boston.

The Details.
I got my second dose of the Kill Betty Juice yesterday in another epically long trip to Boston. We left the house at 7:30 a.m., got home around 10:30 p.m. I’m a little tired.

Marvelous Ginormous Hospital that shall not be named has a terrible pharmacy system that can’t seem to handle requests in a timely fashion. I arrived for my infusion at 1. I didn’t get my drugs until 3:30, and that was after the nurse was on the phone with the pharmacy demanding to know where the drugs were. If you’ll recall, the drugs take 3 hours to administer, plus time to flush the line when the last one finishes. So I was stuck there for almost 6 hours.

On the plus side, I had time to read an entire novel. On the downside, I was stuck in a windowless infusion room so long I had time to read an entire novel.

Prior to the infusion, I also had several appointments.

Oncologist’s office wants me to see an ophthalmologist (a word I could not spell to save my life, thank you spellcheck) about my permanently bloodshot eyes.

I also got some hopeful news from the surgeon who was checking up on my leaking issue (which, if you recall, went away on its own). He said the lump above my ear is completely gone. He believed this lump was tumor based on feel and my latest CT scans, so if he’s right, that’s a good sign that the drugs are working. Add it to my face returning to normal and my pain disappearing, and… fingers crossed.

Just not too tightly because that’s asking for trouble.

Sides: A Tale of Faces and Effects

First the bad side. It appears side effects have caught up to me. At least, I think that’s what’s happening. Starting Tuesday, my throat (glands) have felt sore, and I’ve been experiencing quite a bit of joint pain. My eyes are also bloodshot for no apparent reason (i.e., they aren’t itchy or irritated, so it doesn’t seem to be allergies, and my vision isn’t affected).

I did get some blood work done yesterday, and my local doc felt up my glands and lymph nodes and declared them not swollen. So it looks like this is just pain and it might be here to stay. Oncologist’s office doesn’t seem too concerned as long as my eyes don’t get worse.

Now the good side. My face is on the move again! It’s not fully back to normal yet, but I can smile, blink my left eye, and eat without pain among other things. I thought I’d started noticing improvement last week, but it was so subtle I doubted myself. But it can’t be doubted anymore. Blinking is blinking, and I could definitely NOT blink my left eye last week.

So the question becomes: what does that mean? I don’t know. Everything I’ve read about Bell’s Palsy suggests it takes much longer to go away. If it’s the cancer, like my oncologist believed, then it’s possible my recovery is a sign the treatment is working. He did say it was possible I could start seeing improvement in as fast as a week, which this was.

Is it time to get excited? Probably not, but it’s nice to have something finally go right. And the ability to smile about it.