From where i left my last post: the third interferon round was not a charm, but was also not as bad. However, as this world is bound to do, we’ve moved through some time since then, to round seven, day two. My platelets are showing very good signs of improvement since I started February 28, but just stagnated over the last month.

However, the side effects continue, mainly fatigue, with body ache and dryness. It’s significant, the fatigue. It lasts a good seven days, lessening over time. The fatigue is not just the body. The mind fatigue is worse. You can’t see it but I can feel it. When the side effects are hitting I’m so tired, I can’t manage to think or move more than I need to survive, sometimes even less than enough.

In online forums, I see people say interferon makes them feel better. Unfortunately even in the off week I’m not feeling that. Actually sometimes I feel like it is affecting me all the time. The side effects aren’t improving much anymore. If they are, it is slowly in a way that I am not sure I perceive. I am trying to wait patiently for the feel-better because it is a supposed to very long-haul process with this medication. I’m trying to tolerate.

I saw Dr. Rampal last month, when my platelets were trending down well. He said maybe we could look at injecting every three weeks if I’m feeling like it’s too much. He said we could look at that if platelets continued to decrease to normal and I was still feeling like I wasn’t tolerating well, because ability of the medicine to prevent progression might decrease at that level and ideally I achieve stablility first. So I had been hopeful the platelets would keep dropping and I could go to every three weeks this round.

This week I saw the NP of Dr. Rampal, Katie Kan. I got my labs and saw the platelets had stagnated and were actually +2 higher, ha. That wrecked my plan of going to every three weeks. When she came in the room I hung up with Javi and she saw something on my face. I almost started to cry when I was describing the fatigue wasn’t lessening and it was getting hard for my quality of life, but I held it back. If I didn’t hold back, maybe I wouldn’t be continuing.

Of course it is always my decision and NP Kan of course stated that. But I listen to the doctor and read the papers and see, it would be better if I could tolerate it, science wise, to prevent progression. It’s still a very short-term period I’ve been on Pegasys. Ideally I would be more patient to ride it out if I’m able to. I’m on a low lose with 45mcg every two weeks. The standard is 90mcg once a week. Some people go to 180mcg. If someone told me to go once a week or up it to 90, I would tell them to go f* themselves.

Now at Memorial Day weekend, I feel like the past three months, basically this entire spring, I’ve been just exhausted. I’ve missed important events in other people’s lives and connection opportunities, including connection with my partner. I’m sorry to people who have wondered where I am. I’ve been here but also not here.

Lately snails have been a big part of my life, coming out in pretty good numbers when it rains on our patio. They come into our house even. At night I heard Ratcat playing with something rattling all over the house floor. When I woke up I stepped on something crunchy and thought it was a pistachio. It turned out to be a snail wrapped up tight in his shell and I was upset.

Some snails get stuck in various places when the weather dries. They curl up and stick themselves to the surface they are on to protect themselves. I try to rescue them using water and cardboard and bringing them to a safe damp place. Like, I spend a lot of time on this. I also smashed one again by accident when I was trying to save another one because I didn’t see it. It was very sad. I keep trying to save more of them out of karma for the smashed ones.

I feel like I’m having a snail spring. And sprinkle on some extra stress salt on my skin. A friend said to me, maybe you can be like the snails and just move slow. But life isn’t moving slow enough around me to accommodate that. Work stress and some other weird stressors occurring beyond my own body don’t help, of course.

I would like to have a shell I can take shelter in to protect myself while a cat toys with me. I also want to not have any shell and just be alive out there raw and free despite any consequences of shriveling up. Something bigger than a cat might come and smash your shell anyway.

The thought of continuing this way in summer isn’t a great feeling. Or the rest of the year. I question if I should just stop. If my body is improving in some ways, and halting progression of the disease, that is a good thing. But I’m suffering fairly profoundly as well.

This was my choice in the first place. Is my quality of life right now worth more than possible extra life time in the future?