Julie can't eat cheese

I can’t believe it’s been so long since I’ve posted an update – it’s been 2 years this week since I finished chemo! I get asked a lot how I’m doing and I still never know if it’s like a general “How are you?” or like a “How ARE you?” Cancer is still with me daily as I deal with fatigue, medication side effects, early menopause and it’s side effects, body changes (internal and external – I see the impacts of cancer and treatment every time I look in the mirror)… so if you’re asking me like generally how I am and want the short answer – overall, I’m ok! I’m still considered NED (no evidence of disease). If you’re asking me to hear more and want the details – buckle up!

The biggest impact to life overall is taking Verzenio. This is a stage IV cancer drug that has been shown to prevent recurrence in earlier stage breast cancers when taken for 2 years with an aromatase inhibitor (hormone blocker). It basically stops cancer cells from multiplying and they die off. I am 15 months in – 9 to go! This one is… a lot. I am so thankful for treatment options (yay science!!) and do not regret being on it – it’s just heavy duty and requires a lot of monitoring due to potential impacts to my blood counts, liver, and heart. I get labs every few months now (I graduated from monthly, then every 6 weeks, to every 3 months) to monitor blood counts (all low) and metabolic function (normal!) and EKG every 3 months (all good). My blood counts hadn’t fully rebounded after chemo and radiation – so I’ve had low blood counts for years now. I’m tired, always cold, I get dizzy a lot, have low blood pressure, and brain fog. Verzenio’s other fun side effect is like horrible diarrhea. Luckily I don’t have that but I have found my digestive system to be more sensitive so I keep Imodium and Miralax on hand. It can also cause hair loss and I’ve noticed my hair growth is slow, I lose a lot of hair, and my eye lashes are short and sad. 😭

And yes, I am still plant based and no, that is not contributing to fatigue. I get plenty of protein and I work with a functional medicine doctor and we’ve checked all the usual suspects for fatigue (all normal). My oncologist just did an iron panel and it was all normal. It’s just the impacts of Verzenio.

My aromatase inhibitor (AI) is Letrozole and I will be on that for 10 years total. I recently heard about the breast cancer index test – this tests tumor tissue and it’s dna to determine if hormone blockers are recommended long term. I saw my ~new~ oncologist (#5 since 2023) on 06/30 and asked about this test. It’s not standard practice at Kaiser but he said because of the number of positive lymph nodes I had, I’m considered high risk. So even if the test came back and said I only needed 5 years of the hormone blocker – he would not advise that and recommends the full 10 years. It makes sense but I still cried on the drive home as it’s just hard to hear.

I’m half way through my Zometa infusions – this is the bone strengthener due to low bone density. I get the infusion every 6 months for 3 years. I was measured at my 2nd infusion and I grew! I was a full 5’2” and I always thought I was a little over 5’1”! Maybe it’s the yoga helping with better posture. Haaaaa. The first one was the worst in terms of side effects – flu like symptoms. The last 3 have been super mild.

At my last onco appointment in March I asked if I could get an MRI just to check on things. I’ve had 2 mammograms (all good!) but I have dense breast tissue and I’ve read higher level imaging can be recommended. It was approved and I had a breast MRI in June and everything looks good! Phew!

My hair grow out has been chaos. It’s slowed and my hair has thinned with the Verzenio unfortunately. I also didn’t get chemo curls! Super bummed about that – I’ve always wanted curly hair. I stopped shaving the sides of my hair last year and have been trying to have a short style – but there is no style. 🤣 At this point, I just try to tame it with clips or head bands.

My descent into menopause was a cliff dive – chemo put me in early menopause then I had my ovaries out in late 2023 and also being on a hormone blocker – it’s rough! Weight gain has been hard… The brain fog is real… I forget names and words constantly. I do get hot flashes – but because I’m so anemic, they feel good! They are short, lasting maybe a minute. A really fun side effect is having chronic UTIs (since late last year), which got me a gynecological urology referral. They had to rule out anything nefarious (which really stressed me out for weeks). I had an ultrasound of my bladder and kidneys and then a scope of my bladder. Luckily nothing nefarious, just… menopause. Sigh. I am trying the preventative route right now – so taking a few supplements to see if that helps. If that doesn’t work, there are some medication options but I’d rather not be on more meds at this point. I will follow back up with urology in August.

I got my first tattoo last year! It’s a dandelion puff with the words “there is only now.” The words are something I heard in my mind during a walking meditation in a labyrinth at a cancer retreat. It’s a reminder to live in the present moment and to not worry about what could happen (easier said than done – but hey, I have a visual reminder now!). The dandelion has really cool symbolism: hope, healing, and resilience. They can also symbolize strength, transformation, and can inspire people to overcome adversity and embrace change. Dandelions are also known for their ability to grow in unexpected places, which can symbolize strength and adaptability. They are packed with vitamins and minerals, with a variety of health benefits and have become a symbol of healing, rejuvenation, and overall well-being.

My word last year was joy and I’ve experienced so much joy. Despite being really tired and managing a million various side effects, I felt like I could DO LIFE again! I have had to make sure I’m not overdoing it – I have to really listen to my body (or it tells me loud and clear and rudely to slow down via migraines! Which I had heard can go away in menopause, like one GOOD thing… but no such luck yet.).

My word this year is community (be in it, grow it, nurture it) and I have been so lucky to have such amazing community around me and my family. ❤️