Day 8-:

June 25, 2024

Today has been a bad day. I have not really felt well at all. I slept well last night, got up just in time to dress, care for my dog’s morning routine, and then take my pill. But the day went to hell after a while, and it hasn’t recovered yet.

Good thing was that Doug fixed me a delightful smoothie, milk, fresh strawberries, a banana, some plain yogurt, and a little vanilla ice cream. It tasted great and went down well. My hands weren’t hurting today, and I thought I was on a good road for this eight day.

But then, I started developing a headache, pretty strong one at that. I also felt like my pulse was racing, heart beating just that bit too fast. There are big warnings on this med about high blood pressure, and that was one side effect that scared me. Around noon, the exhausted feeling came over me, so I lay down and slept for about three hours. It was hard to wake myself up, but I got a text from my sister saying she might come by to take pictures of some documents I need to send to someone. She asked about my hands, giving me a need to answer the text. Also, it was nearly time to feed Shani, and though Doug is willing and happy to feed her for me, she is my guide dog, and as a nearly 50-year guide dog handler, that responsibility is bred in my bones. Besides it makes me feel like I’ve done something with my day!

Doug had gone for a walk before it got too hot around here, and he’d brought me a frappuccino from starbucks, caramel ribbon crunch. It had been in the fridge while I slept, but it was still cold, partly icy, and just tasted good. However, now I feel nauseated. The headache is back, and I just feel generally and all over bad. It’s hard to pinpoint more details, except that I just don’t feel well. Ugh.

I want to say some things about my incredible friend Doug. I am blessed beyond words with such a friend as this. He has put his own life on hold, flown down here, and is staying goodness only knows how long, to help take care of me. My sister Rosie is close too, but she has her own job, husband, and family to take care of. She’s here often, but she couldn’t be here 24/7 during these first few weeks. Doug is retired, and he has been here every step of this journey so far, helping in whatever way he can. He makes sure I eat, fills my hydro flasks with water, cooks for me or makes the smoothies, listens to my fears and worries, gets up every day to hang out while I take the pill. He does his own thing too, which I encourage. The caretaker must take care of himself first and foremost. He takes time to get out with his dog, or to read, often sitting nearby but using earbuds to read an audio book. But he’s there, and I know I only need speak a word, and he’ll be at my side to take care of what I need. God has truly brought such a friend into my life. We met 25 years ago in a guide dog training class. Perhaps for this exact time in my life, and various other times in both our lives, but our friendship has only gotten stronger through all the years. The greatest gift the Lord gives us is our friends, and I know how rich I am in this gift.

Days 9 and 10:

June 26-27, 2024

Yesterday wasn’t too bad. I didn’t sleep well the night before, so I went back to bed for a while, after being up for a few hours. Overall, except for insomnia tiredness, and a slight headache, I felt pretty good. I found myself thinking, is this how it is. Am I going to skate through this? Does this relative feeling of good mean the meds aren’t working, or is my body just handling it well? And, possibly most important of all, am I ignoring side effects, because I’m so used to ignoring discomfort and pain from growing up with arthritis? But it was a good day, and I’ll take them where I can.

Disappointed to write that I did not sleep well again last night. am I having reverse fatigue, as in increased insomnia? I’m determined to stay awake all day today, unless the fatigue comes again, that moment where I hit the wall, the lightning bolt of exhaustion overtakes me, and I must crash.

Had a video call with one of the nurses in Dr. Z’s office this morning. This was a scheduled appointment. My sister couldn’t be here for it, but Doug sat in and made sure I didn’t forget to describe all my side effects, or forget to ask questions. I asked a few things. One was can I believe that maybe I’m just going to do well on these meds, or do they accumulate and get worse over time, or what. She told me she couldn’t predict that. Makes sense really, as everyone’s experiences will be different. Anyway, it was good to have the check in. I made sure to tell her about the headaches, the fatigue, the occasional nausea, and so forth. She is still very concerned about the hands, and warned me again to continue to use the Curel lotion often. She wants me also to use it on my feet, but it’s hard to do that. I have to figure out a system for it. She also warned me against ignoring side effects that I should report. I reiterated that having grown up with the arthritis, it’s not natural for me to focus on every little problem.

Carry on, that’s the word for now. I meet with Dr. Z next week, Wednesday the 3^rd. I know I’ve complained about his lack of time and explaining, and all that, but I’m so impressed with how the office has rallied around me through these first days of treatment, the constant support, and I feel like I can forgive his lack of bedside manner.

I was so tired this morning, and Doug, in his kindness, bought me Starbucks from doordash! It helped a lot, but now I feel that vague nausea. Ugh!

It’s later, still afternoon, and I feel much worse. For the first time since the first night, I had some diarrhea. Nausea is strong now. That horrible wiped out feeling is overshadowing my good intentions to stay up all day, so as not to risk another sleepless night. I’m supposed to participate in an advisory board meeting this afternoon, for my favorite movie review podcast, but I feel so awful, I don’t know if I can do it. Ugh. I missed last month’s meeting, and I want to be there. It’s just a zoom thing. I guess I’ll just have to see how I feel in an hour.

Day 11:

June 28, 2024

Today has just been weird. I finally had a decent night sleep, after my last two night being bad. But when I woke up, my chest felt like someone had beaten me during the night. Not heart pain, but right in the middle of the chest. I don’t consider that as a side effect, but if it continues, I will mention it.

I had the fatigue thing again, and slept about three more hours today. Hoping that won’t interfere with my sleep.

I took a shower around 4 in the afternoon, after feeding my dog. And things started going not so well. I brushed my teeth, and the paste made my mouth burn. Yeah, sometimes, extra strong minty toothpaste might do that, but I use sensitive toothpaste varieties, and it’s never done that before. However, my sister was coming over, so I promptly forgot about the mouth burning. We ordered a pizza from Domino’s, their spinach and feta pizza. It’s got a garlic cream sauce over the fairly thin crust. It has what it says, spinach and feta on the pizza, nothing that would be a problem in my mouth. My mouth burned with every bite. Rosie and I both had a beer with our pizza, and the beer burned too. My tongue and my lips were the ones burning, and let’s not make a country music association with the idea of burning lips. Mouth sores are a serious side effect of this medication. I remember during my dad’s chemo, it hurt him to eat anything, and he lived on ensures, which he drank through a straw. I do have straws, for the times that my doordash order arrives without one, when a straw should be there. So, I finished my beer with a straw. Lol. Okay, that is a country song in the making. “Drinkin my beer through a straw…” I like it. I’ll have to work on the lyrics!

I just now drank some water, and it did not burn. Good thing, huh?

I think that rather than diarrhea, I’m getting the opposite side effect, a bit of constipation. This is a known side effect, so I have meds for it. If things don’t, well, start moving by tomorrow, I’ll try one. I have a most difficult time sleeping straight through the night, so I’m not looking to try anything that could wake me up when I need to be asleep. Very light sleeper here; the slightest sound can wake me up, and if I have to get up for something in the night I often don’t go back to sleep. So, we’ll just wait on this possible effect.