Month: February 2021

Hearing loss

I don’t think I have really said much about my hearing loss. It started with tinnitus that I noticed after my early stage treatment, but figured that it wasn’t terrible enough to do anything about. Everyone deals with some form of it right? But over the years it became louder and more noticeable, and I noticed that I was saying “what?” a whole lot more to the people I was trying to have conversations with, especially my kids. It was also worse in bars, restaurants, sporting events, anything with background noise. Masks made hearing people even more difficult too because I tend to watch people’s mouths to help me decode what they are saying.

At the end of December I went for a hearing test. The hearing test confirmed what I suspected, premature hearing loss, specifically at higher frequencies (i.e., children’s voices, women’s voices, and birds), and worse in my right ear. Just to make sure nothing cancery was growing in my brain and causing the hearing loss I had a brain MRI.

To be honest, I was scared. Brain mets aren’t super common in hormone positive, HER2 negative breast cancers, but they can still happen. And brain mets aren’t easily treated and in many cases once found they can accelerate one’s life even more so than just having regular old stage IV breast cancer does. So I was spiraling a bit — praying that there was no mass in my brain, praying that there would be some other explanation.

Good news, no brain mets. My brain in perfectly “unremarkable.” In Cancerland you want unremarkable. Boring is GOOD.

So I went back in to the ENT today to find out his thoughts on my hearing loss. He suspects that I have ototoxicity from either chemotherapy or a strong antibiotic, but probably the chemotherapy. At this point the tinnitus and hearing loss isn’t more than a distraction and somewhat annoying. I’ll go back in a year for another hearing test, and if my hearing loss is stable then I’ll return in two years for follow up. No need for hearing aids for now!

It is confirmed that I am officially aging prematurely thanks to estrogen blockers and surgical menopause, and treatment in general. I have achy joints; dry thin skin, hair and nails; aging eyes; and now hearing loss. I keep telling people I am a 36 year old with a 68 year old body. But aging is a gift I am happy to have.

Oh and since it had been so long since I got dressed up in anything besides jeans or stretch pants I decided I wanted to look like an adult today when meeting with my ENT. He’s a sweet old guy that has his initials embroidered on his dress shirt pocket — it was the least I could do 🙂 I did my hair, put on some makeup, styled myself up! Just because it doesn’t happen often anymore I captured a picture.

Just a silly selfie before leaving my house and doing adult things

Keep it up: an update, reminisce with me, and an announcement

Tomorrow I meet with my team virtually. I have already had my blood draw this week and tomorrow I’ll be able to see the faces of my oncology nurse practitioner and my research nurse on a computer screen from the comfort of my bedroom. I’ll get the results of my blood work and we will discuss all things cancer and a few things not cancer.

That is one silver lining of the life and times of COVID — less time on the road to Boston or in Dana Farber and more time at home with my family. I love seeing my team in person, but I also love the convenience of doing virtual visits. We are now in a nice routine: scans and then one visit in person, three weeks later a virtual visit, three weeks later an in person visit, three weeks later a virtual visit, and then three weeks later we cycle through again with scans.

Cancerland has been decent lately. I’m doing well. Still showing no evidence of active disease and feeling so grateful for that everyday. I have been spending time enjoying winter. Yes, I am actually enjoying being outside in the cold! I have been cross country skiing and have been playing the role of lodge mom, without the lodge, on the mountain while my kids and husband have been enjoying downhill skiing/snowboarding. I have hosted a couple of socially distant and small bonfires at my house too.

XC skiing with kids at Powder Major Farm
XC skiing with the kids at Powder Major Farm

The side effects from my medications have been taking their toll lately though. One of meds causes my blood counts to be low. This looks like a low absolute neutrophil count and the result of that for me is mouth sores and fatigue. Also, my joints, back, and neck have been unbearably painful at times. I am told that staying active is the best way to help mitigate aches and pains, but it sure is hard to want to be active when the result of said activity is a sore body. Lucky, I am rarely in pain while doing my favorite activities, it’s always afterwards when I am trying to relax that feels the worst. So maybe the solution is to never stop moving 😉 A bulged disc in my neck and some pain in my wrist are causing me discomfort as I write this, but it’s like a steady simmer of a 5 out of 10 which isn’t bad all things considered.

The AnaOno stage before the show began

I was reminiscing last week as I realized it has been a year since I was in NYC for Fashion Week. I attended the AnaOno show that raises money for Metavivor. It was empowering and fun to see. I can’t wait to go again next year, when all of this COVID business is hopefully looking a little less pandemic-y.

Recently I also got the opportunity to share my MBC story with a woman named Amy from 4G Clinical. It’s a neat organization that’s trying to connect clinical trials and meds to patients in a faster more efficient manner. You can see my story here on the 4G Clinical blog page.

One more exciting thing to announce! I have my first COVID vaccine scheduled for next month. I cannot wait, yet I am nervous too. Both feelings. I hope it means I get to hug my friends again and see my parents and siblings very soon. And I hope it means travel. Even this introverted, homebody needs people and to see the world again.

Keep doing the hard things. There is a light at the end of the tunnel.

UPDATE 2/18: Since I wrote the above yesterday I have met with my oncology team. My thyroid numbers are still off so we are adjusting (lowering) my dose of synthroid. My neutrophils dropped even lower but I can still continue with the meds for another 3 weeks. I have no more wiggle room though — if I drop any more points I will need to take a break from my meds. I am trying to get them up but it’s proving difficult. And lastly I told my oncologist about a dizzy episode I had the other day. Sounds like vertigo. What a terrible feeling! I just had a brain MRI in December so I am good on that front for now, but if vertigo happens again, it’s back in for another look into my head.