It feels like a long time since I posted something, but actually it hasn’t been that long. I have been working on a few things, but they aren’t done yet.
I switched recently from getting Dara and dex weekly, to every other week. I seemed to be more or less humming along getting it weekly so that’s what I was expecting, getting it every other week.
Well, I was wrong about that. It almost seems like my body reset from the drugs and I was getting them for the first time all over again. Nothing major from side affects, other than extreme FATIGUE. I was a zombie for days. I had my normal loss of sleep for two days from the dex, but even on those days I didn’t want to get out of bed in the middle of the night to do things, like I normally do. I get the injection and dex on Saturday and more dex on Sunday.
Monday, Tuesday and Wednesday I was sleeping 9-10 hours a night. I’d go to bed tired and wake up just as tired 🥱. It wasn’t until Thursday, til I started snapping out of it. It would have been interesting to see a CBC, to see what the blood was doing. Red blood cell drop?
I was still up doing things, but as bedtime got closer, my bed was looking so good. “Honey, I’m going to bed!”
No chemo this week, I’m even on a Pom break. Blood tests at the end of the week.
Speaking of blood tests. I was reading an article about some myeloma patients relapsing after initial treatment with bispecific antibodies, which of course is what Dara is. HAHA, just what I need to be reading after starting initial treatment 😅.
I could see my mind, almost from a third party, start the fear cycle. It lasted a few seconds before I said to myself “Screw it, I’m not going down this road. It’s either working or not and that’s out of my control.” Keep living while you still have life and not worry about the rest.
I’ve been referred to Stanford for a bone marrow transplant. I have my meeting with them tomorrow. I met with them 3 years ago to go over everything and learn about it. I did not elect to do it at the time. Something about it never sat right with me. It just seems counterintuitive to me. Dropping an atomic bomb on my body, while they try and keep me alive, waiting for my body to pick up the pieces and put it back together.
I hired a myeloma specialist earlier in the year from UCSF. I had to pay out of pocket for it, since my provider claims to have expertise in myeloma and they wouldn’t cover it, since it’s out of network. I now know, their expertise is limited compared to the specialist and UCSF. American health care can be so frustrating 😡.
The specialist told me, that there are basically only four things that work against myeloma. Initial treatment, Bone marrow transplant, Dara and Car T cell therapy. There is some free knowledge for you from a specialist. Hence, that’s why I’m back to heading down to talk with Stanford tomorrow. I’ve learned to let go of things and just go with the flow in my particular point in the river.
My youngest son Rohan (12), decided he wanted to play baseball. They have a winter league starting up soon, so we signed him up. He’s really excited and looking forward to it. I decided to sign up to be a assistant coach for his age group. I’m not sure what compelled me to volunteer to be surrounded by a bunch of pre teens and teens. I’ll just have to not come on days that I’m affected by dex 🤯.
I do enjoy baseball. I played on a team when I was around his age. I remember being so competitive. I played first base for the beginning of the season. Our worse player got stuck out in right field of course. After seeing him not catch the ball repeatedly, I asked to be switched to center field.
I remember one game, the other team figured out that our right fielder had catching issues and kept hitting the ball to right. Hit after hit, run after run. I got so mad at my teammate. I was playing center and a good chunk of right, which of course is too much ground to cover effectively for one person. I was having balls fall in center because I was in right field, which of course did not help my mental attitude 😅. We lost the game of course.
Our right fielder had lots of fielding practice going forward and things got better, including his happiness. I’m sure he didn’t like dropping every ball that was hit his way. I’d sure like to go back in time and smack myself on top of the head to gain some sense.
Looking back on something like that now, it’s so trivial. Like a little league game matters in the grand scheme of things. It’s funny how a lot of things in life we give greater importance to than they actually have. One of the things that matter (in my opinion) with life, is the happiness for the people that surround you. I hope to pass that on to the next generation.
Carrots Over Cancer 