Round one of interferon was pretty intense. After signing off the last post, I started feeling really tired. I woke up day 2 with body ache and strong fatigue, which continued to day 3. Day 4 (Monday) I had tentatively taken off work, with some optimism I could potentially work from home. I woke up and realized I absolutely was not in any shape for working. Day 5 I went to work in person but went home mid-afternoon feeling depleted.

While things got progressively better, it wasn’t until day 8 I felt my energy level was back to normal. Then day 9 we flew off to our vacation, spending a week on some great beaches. Immediately after getting home, I put my suitcase down, greeted kitties, and took the Pegasys vial out of the fridge to warm up. I did my next injection two days behind schedule at 3:30am Sunday morning (day 16, or 1). Round two! But during the second round, well….ko got KO’d.

Day 2 and 3 when I was tentatively planning to be out, I took some easy student advising meetings on zoom to help team coverage. That small amount of effort I could normally do in my sleep, but they totally exhausted me. I remember my mom asked me how I was feeling on day 2 or 3 and I was like “it’s okay.” It hurt physically to type that and took a lot of energy, but I still wanted it to be okay. I was kind of obfuscating that I felt terrible to everybody, because I didn’t want people to start thinking I should stop taking it. On day 4 I could barely get out of bed in the morning after sleeping 12 hours. I was picking off easy emails from my vacation backlog and feebly responding, but couldn’t handle even considering more mentally challenging tasks.

I was thinking, is this possibly worse than last time? Unlike chemo, side effects are supposed to lessen potentially each time I take it, as the body builds tolerance. And am I feeling crappier as the days pass? And in a particular injection cycle are not meant to worsen in intensity beyond day 3. It was upsetting/disturbing to me that everything was so difficult. Particularly mental tasks, it freaked me out that I couldn’t manage to even think about complex things. Day 5 I went again to work in-person to tend to my beloved Global Group. One of my coworkers told me right away when she say me that I seemed worse than when she saw me on zoom a couple days prior. My face was red and my speaking was duller and quieter than usual.

It really did feel like things were going downhill. That night my body ached more than ever, particularly my lower back, my head hurt, my skin was painful to the touch. It was like 10/10 flulike body symptoms. I felt like my body was breaking down as I crashed and went to sleep. I woke up on day 6 and realized I was having symptoms of a urinary tract infection, as well as a return of last month’s sinus infection. As it was Friday, I was lucky to get an afternoon appointment with my PCP Dr. Chen. He truly cares and remembers all my frequent flyer details, including my infection and antibiotic history. I shudder to think trying to explain all my hardcore medication list and list of ailments to some random at urgent care.

Dr. Chen wrote me a new antibiotic script which I had some ridiculous drama trying to get filled at a Duane Reade/Walgreens. I made a fatal mistake in requesting it sent there, as it was slightly closer to home instead of my normal mom&pop pharmacy. I’ll spare the details but it was stressful. Just before 5pm I had to get the doctor to resend it to the mom&pop and get Javi go help get there before they closed for the Sabbath. (Shout out to Myrtle Pharmacy and Dr. Chen from Tru Medical, and of course Javi!)

It was good I got those drugs because when the UTI labs came back they showed a raging infection. Monday (day 9) I was still recovering and had a follow up appointment with Dr. Rampal’s number 2 Nurse Practitioner Kan. She confirmed interferon can affect the immune system and we’ll need to see how things go whether I continue to have issues with infections. Similarly we’ll need to see if my tolerance to the Pegasys improves and side effects reduce over more time. I agreed to keep going with the same dosage and schedule, which is also what I expected/wanted.

The cool thing is my platelets did drop from last month’s 710 to 522, so maybe the interferon is already doing some of that positive interference. Also my kidneys and liver function are stable. AND, I’m not having the worst kind of side effects, which can be mood changes and/or suicidal ideation. I’ll have some check-up tests in a month and see Dr. Rampal in two months to discuss findings. I will have the final call whether the good is outweighing the bad for me with interferon, as it relates to my side effects, tolerance, immune system, blood counts, and quality of life.

I’ve had some continued drama trying to get my Nucala (mepolizumab, for the eosinophilia) moved over from Weill-Cornell/NYP to MSK. The prior authorization did come through finally. Actually Dr. VanderEls called me with good news while I was sitting on the beach and told me to have a tiki drink to celebrate, hah! But it wasn’t over yet. The additional delay is the fault of this speciality pharmacy Accredo that Cigna is requiring me to use now. The NYP specialty pharmacy actually called trying to help get me a dose, but couldn’t, because Accredo already billed the drug for this month.

I had multiple chats and follow-up calls with Accredo over the past 10 days, explaining the same story each time, no movement as promised each time, while my monthly dose date approaches. On Wednesday (day 11), I waited on hold with for an hour, I finally got to a higher level person who said they understood, and then they hung up on me. I called again and when I repeated my story, this time I started crying, practically begging, to please give the medication I need to breathe and prevent any more organ damage. The poor guy who got me was likely from a call center abroad; it wasn’t his fault, I feel bad.

Today, Friday, they finally scheduled my Nucala delivery for next Friday, April 4, just in time for my next dose Monday, April 7. Those upcoming dates are also digestively related. I will need to start a low fiber diet April 4, which will progress to some more aggressive cleansing protocols over the weekend. April 7 I will have an endoscopy as well as colonoscopy in one fell swoop. Let’s hope I don’t need to start another blog called “mypoopproblems.”

Now, it is time for me to go to the fridge, take out my vial, and get ready for interferon round three. Ding ding ding! Third time’s…?