Pain Levels, Liver numbers, (Kind of a Dull Read)

 

Mostly dull, kind of a yawner:

I was a new woman Sunday. After Thursday night’s pain crisis, Friday night I started the new med plan formulated by a palliative doctor. He wanted to add in two new meds and eliminate one of my existing three. I started one of the new meds on Friday night, but I didn't start the second new one until Sunday. This way I would know which medication was the cause of any possible side effects. I didn't notice side effects on either one. Yay. Until Sunday night, that is.

The med he wanted to eliminate I eliminated starting Sunday morning, as he recommended, since I should overlap old and new for a day. It was the 7-day patch. I was a little worried about the changeover, and about stopping a current med. We've had to ramp up the dosage on the 7-day patch three weeks in a row, which made it seem like it wasn't really the right thing for me. So Sunday morning the patch came off for the last time.

Sunday I felt good enough that I only took one pill instead of two of an existing med every four hours (I had taken two every four hours over the last three days). In fact, I actually forgot to take that pain reliever until an hour late because I was feeling so good. I have timers going off on my smart watch all the time: Take this one every four hours, take that one every 12 hours, take this 30 minutes before a meal, don’t lie down for 30 minutes after you take that one, take the ice pack off in 20 minutes, take the castor oil/heating pad liver pack off in 20 minutes, etc. I am very busy! The existing med that I'm only supposed to be taking 1-2 of for occasional breakthrough pain I was taking two of every four hours, five times a day for a couple of days. That was when I was in crisis mode.

Sunday night was pretty horrid. I hardly got any sleep at all. I think I slept for 30 minutes at a time about four times but that was after about 4:30am. I had to continue taking pain meds during the night since I was wide awake and not sleeping through any discomfort like I might normally do. One of the new meds is a steroid which brings down inflammation, which may be causing pain. I’m supposed to take that by 9:00 in the morning because it can affect your sleep at night side. Another side effect is it can make you feel energetic during the day. I was a little worried about that, but I didn’t have the energetic side effect at all.

Monday: My pain levels are kind of back to normal. Meaning, not fantastic like Sunday, but not in crisis like Thursday night and Friday. Trying to figure out why Monday was worse than Sunday, the only thing I can come up with is because the 7-day patch is now off. I don’t know. My friend Dianne is right on when she says pain can be tricky. I mean, in the Before Times I would think to myself, “I have a headache, I’ll take a Tylenol. Done.” But with this more serious condition, I feel like we have to keep feeling our way around to find what works, while my symptoms are moving targets. 

The summary of all those words and numbers is: after the crisis, I had an unbelievably fantastic day on Sunday, but seemed to be almost back to baseline on Monday. The pendulum may still be swinging, so we’ll see where it lands. 

Blah blah, I’m saying so many words when I really should just be trying to get some nappage after a sleepless night. But I decided to try voice-to-text on an iPad and it works so much better than on my Android phone. I can’t stop talking. It’s pretty slick. Talkity talkity taaalk talk…

Monday afternoon I had my first acupuncture appointment. Sunday when I was doing so well I wondered if I should even keep the appointment. Do I even need it? I see now that I do. As long as we are there at Kaiser, I will get my liver numbers checked just for fun. I ended up going back to double pain relievers every four hours a couple of times for the rest of today.

Acupuncture was a good experience. She said their goal is to reduce pain by about 50%. It will be hard to know what makes the difference in pain levels, but as long as something does, that’s what’s important. 

Tuesday: I am feeling slightly better today and I’m back down to the one pain reliever every four hours that I keep referring to. Das ist gut. Had some pretty attention-getting muscle spasms in my right shoulder blade after a walk and 18 stairs this morning. (Up and down 6 stairs, three times, with my spotter close behind to keep me safe.) Ice seemed to help the spasms.

My PT lady came by today for our third weekly visit. I’m doing pretty well in that regard. Just working on legs and balance. A few more muscle spasms during and after that. I think they must be from muscle engagement. I think I’ve learned my lesson: lie down and never move. ;)

Got my liver numbers back. They are actually right in the normal range where they belong—amazing, after being in the stratosphere for a while. I’m sure it is still covered with “bad cells”, but it appears that it is at least functioning and not being overburdened by supplements or anything else. Michael announced to me yesterday as we were waiting for my blood draw that I was going to get my numbers back, that they were going to look great, and that I might feel a little twinge of disappointment, but that my turnaround will begin, and we will need to start making wonderful plans for the future. Later, as I thought about his wording, I corrected him to let him know that there would not be a twinge of disappointment about not dying, but possibly a twinge of fear and uncertainty of what my future will look like. Right now with the direction I appear to be heading, I know what my future is. It will be a little while of something unpleasant and then wonderful and thrilling forever after that. But if I do make a comeback, I won’t know what my future will be. Will I be wondering every day when the bad cells are going to come back? Will I have to experience this again? Will I have to continue getting radioactive scans to make sure it’s still really gone? It’s not uncommon for people to overcome bad cells, just to have them come back worse later. What if Michael ends up going first, which I really don’t want. I’m too selfish for that. You know, all the weird worries I’ve already shared with you about surviving. This is where I, once again, remind myself to trust who is really in charge.

I have lots more to share with you, my friends, but this is all for now.