The day after I did my last triumphant post on how everything was going better I did another interferon injection. Then the next day I was on my bike on a beautiful fall weekend afternoon pedaling towards a new place to try for lunch. It should have been an easy ride. I was struggling going so slow and I was like what’s wrong with me. At the restaurant, which I theoretically would be enjoying a lot, I felt super out of myself. No appetite, lethargic, everything taking a lot of effort. I realized I was getting hit by the injection. NO!

I felt affected almost a full week again with bad fatigue and some body ache. Back to how I was feeling in the Spring in the interferon journey. Or maybe worse. I am not sure why but it was remarkably bad with the side effects. Probably because I told you all it was better, haha. I also had more of a headache which isn’t something I felt prior. However it nicely subsided by the time we spent the weekend in Michigan with my family. That weekend was the only real health bright spot this month though.

Then the next week thereafter I had a busy week with important meetings I was coordinating at work with multiple players. I started feeling not great and then realized I was really falling sick with some kind of virus. I went to urgent care but tested negative for likely culprits. On Friday I did my injection again while not feeling well while Javi was in Spain. Then I was basically in a sick-daze the whole weekend. It was hard to tell what was the virus and what was the interferon.

Monday my not-well-haze continued and I called out. Tuesday I went back to work thinking I was getting better; Wednesday I also went in but realized I was going down again and left work and went straight to the doctor. Again all panels came back negative. By then my voice was completely gone, like in a very crazy way, and my throat and nose were affected and I was wheezing from the chest with apparently bad bacterial infection at that point. So I got antibiotics and steroid combo for five days and took some more time off to rest.

I also got some blood tests for MSK at the same time. I got cleared to go to the infusion center for the draw wearing a K95 mask, as the bacterial infection shouldn’t be contagious besides direct contact like kissing/sharing drinks. Obviously you would not want to be taking any risk infecting cancer patients getting infusions, so my feelings were not hurt when they put me in an isolation room and closed the door. However I could hear staff calling my name and I was trying to say “HERE!” in the room. But they could not hear me due to my tiny pathetic lost voice. I spent about 20 minutes in that situation actually debating calling MSK operator to try to tell them where I was and that I could hear them calling for me, but they could not find me. And I didn’t want to open the door because there were other patients out there. Trapped and lost in the isolation room…finally eventually rescued by the front desk and seen by nurse geared up with all the PPE (mask gown glasses gloves) pandemic style.

My platelets were only 12 above normal zone (under 400) which is the closest to normal they’ve been in recent years. I had some other things off on my counts due to my infection, presumably. I did report that the interferon seemed to be impacting me more again to MSK. But that I would still keep going with it. I noticed after the infection interferon combo I had some of that blood matter in my pee that I also had earlier this year. I think when I had it prior I had also got hit with that infection interferon combo. It was only for one day this time and since last time nothing major was seen, I’m not super concerned.

The meds for the infection worked to restore my voice and a good deal of energy. And I felt better over this past weekend and started coming back more full force at work. However honestly I haven’t felt very very well since I started feeling sick two weeks ago now. And also since the injection prior to that which was almost a month ago now. Feeling kind of weak and a bit faint and strange in the head. Javi returned on Friday and I’ve been quaratining from him in another room because he wasn’t feeling well. And the steroids lower immune system and mine is already compromised. I was not feeling great plus getting more and more of a dry cough and some feeling of shortness of breath.

But then today when my cough was getting pretty bad I remembered I was late to do my monthly mepolizumab. So I think the pulmonary part of those symptoms is due to needing that medication dose. I just took it, so hopefully that gets better. In some ways would actually like to try to go off it and rely on the inhaled Breo for a while to keep the symptoms at bay and see what happens with my eosinophil count. But elevated eosinophils again potentially damaging my lungs further may be too big of a risk for that experimentation.

I’ll do interferon again this Friday. I’m a bit concerned about that because of never really having felt better for a while now. Javi’s having a gathering at our place on Saturday that I very much want to feel alive and well for. We’ll see. I still need to get my covid and flu vaccines and the pulmonology nurse said I should probably get pneumonia too. I just want to feel okay-ish to start with when I do that. Hopefully I get to okay-ish soon! So as follow up to the celebratory/optimistic report everything is improved…. well….. less than so since. Keeping on still. That’s Life.