Julie can't eat cheese

I’ve had this update in drafts for weeks and weeks and have had so many people reach out recently to see how I’m doing! Thank you for the messages and motivation to get the update done! Most of my life I think I’ve had an addiction to busyness and doing things, but since finishing active cancer treatment I have developed an allergy to busy. I am now more drawn to rest, recovery, and slowness. It was a busy spring/start of summer so I didn’t feel like writing. I have lots to update – so here goes part 1!

I shared in my last update in February that I’d be starting new meds (Verzenio, Letrozole, and Zometa). I’ve been on Verzenio and Letrozole for 5ish months now and the name of the game is Side Effect Management!

Letrozole is a post-menopausal hormone blocker and most common side effect is joint pain. I do have that – especially if I sit too long. I feel pretty creaky when I stand so getting up and moving helps. I take 2 supplements to hopefully address this – tart cherry and MK-7 (vit K). The joint pain isn’t terrible, but it is noticeable. I’ll be on Letrozole for 10 years and it is a once a day pill.

Verzenio… oh Verzenio. It is a stage IV cancer drug that has recently been approved for earlier stages of breast cancer at high risk for recurrence. It stops cancer cells from multiplying, so if there are any hiding out in my body – hopefully they will die off (pew pew!). It has like a million side effects… so don’t read the drug insert. Most common are diarrhea (and not normal diarrhea, but like the bad, poop your pants kind and often, so don’t leave your house) and low blood counts. I have the opposite of diarrhea (yaaaay) so have to take Miralax. It has tanked my blood counts – which were finally back to normal after chemo. The low blood counts do mean my immune system is weaker, my blood pressure has been low, shortness of breath, fatigue, and I frequently get dizzy if I stand up too fast.

I have an assigned specialty pharmacist at Kaiser, who I talked with often during the first few months and can email her directly with any questions. She’s awesome! I also have a care manager through the drug manufacturer who calls me every few weeks to check in on side effects. There are frequent labs and EKGs with Verzenio to ensure my blood counts aren’t going too low and that there aren’t heart or liver impacts. My EKGs have all been good, metabolic panel all normal, and the blood counts (while low) aren’t low enough to reduce the dosage or go off. So for me, the benefits outweigh the risks for now. I’ll be on Verzenio for 2 years and it’s a twice a day pill. It also costs $16k a month! Not a typo – sixteen thousand dollars. A month. [another side rant… whhhhhyyyyyyyy is healthcare in our country a for-profit business?? Why do we not have universal healthcare al-freakin-ready…??] Anyways *steps off soap box* Kaiser has a program with the drug company so I THANKFULLY do not have a copay. But don’t worry insurance/drug manufacturers – I will probably hit my out of pocket max for the third year in a row because of all the other things I have to do that are not fully covered. And yes, I’m still paying off my medical bills from 2022 and 2023. So just add 2024 onto there, thanks.

Zometa is an infusion that I will get once every 6 months for 3 years. This is a bone strengthening drug. Going into early menopause and having had chemo puts me at higher risk of osteoporosis later. Before starting the infusions, I had to get a DEXA bone scan to check my done density. It showed low bone density – so Zometa infusion here we come! I have to take a calcium supplement while on Zometa and also had to see the dentist before to ensure I didn’t need dental work and if I did, I’d have to get it done before starting the infusions. Luckily I didn’t!

I had my first infusion on 3/12 . One of my chemo nurses was there and the 2nd nurse was my former nurse case manager (who I’d never met in person but had emailed and talked with on the phone a ton!). Her position had been eliminated so she was transferred to the infusion center. [side rant – such utter BS that her previous role is gone – she was amazing and helped me so much at the start of my cancer diagnosis. It would have been a lot harder without her support and resources.]

The infusion went fine overall – I cannot even remember how long it was, I think I was there around an hour or so. Side effects are potential flu like symptoms and I got those two days after. I felt pretty horrible and had to take a sick day from work. One of my doctors shared at some point that the first infusion is usually the worst – so hopefully that is true!

I have seen my oncologist monthly since starting Verzenio to go over labs and talk about side effects. For the first two months I did labs every two weeks, then graduated to monthly after two more months. And after my last appointment (6/28) – I will now have labs and the subsequent oncology follow up every two months.

I had PT in March and April to address some tightness/range of motion issues on my left side arm (cancer side). My radiation oncologist had thought it might be lymphadema back in January. It doesn’t seem to be that luckily and the PT shared the radiated area takes two year to heal (which no one had told me before!). I need to continue stretching and massaging the radiated area for two years to ensure the range of motion improves and doesn’t get worse. I am not good at massaging the tissue but Dan and I have continued to do nightly yoga and there are a few poses that really hit this area. I’ve seen and felt improvement from our yoga practice. It is still tight, especially a little lower towards my ribs, but I can now fully straighten my arm over my head and cannot see or feel much difference from my right and left sides. Wooooo!

I have so much more to share – so will get working on part 2! Thanks again for being on this wild ride with me. ❤️