A few days ago, October 20th, 2023, was the 19th anniversary of getting word that I had breast cancer for the first time. In 2004, I was 39 and it was a shock to learn that the lump I had found in my right breast was cancer. Granted, it really wasn’t a shock as I had been feeling “off” for several months. I had no family history of breast cancer at the time of this diagnosis.
This third round, which I found out about just over a week ago on October 11th, and told you all about last week, I have not at all been feeling “off.” Thus this diagnosis was and still does feel like a massive unwelcome surprise and shock.
I’m still crying, but not as much and not as desperate. Yesterday, Saturday, October 21st, I volunteered at the Victory Races put on by my Run Club Run Minnesota, and got lots of love and connection from and with my deep and wide running community.
When I got home, I was punched with dread. It hit my solar plexus and I felt my shoulders curl in and my heart started to ache. The word dread kept popping around in my brain. I realized I didn’t exactly know what dread meant, so as I used to do regularly as a child, I looked it up.
Dread, from the Cambridge Dictionary: to feel extremely worried or frightened about something that is going to happen or that might happen.
That fit. Starting this particular cancer treatment, which is the first line of defense for this third round of cancer I’m dealing with, fills me with dread. The fear and the worry are awful. I’ve done a bit of reading about the side effects of letrozole.
Plus I’ve talked to two of my dear breast cancer surviving friends who have taken this drug. The side effects that will happen and exactly what mine will be is still unknown. After all, every body is different.
Here’s my letrozole worry list. I wrote this a few days ago.
- My insulin dosing will need to change dramatically.
- Excessive hot flashes.
- Terrible insomnia.
- Mental fatigue and headaches.
- Extreme bone, joint and muscle aches.
- Activation of arthritis.
- Weight gain.
- High cholesterol.
- Feeling dizzy.
- Gastrointestinal issues such as pain, diarrhea.
- Hair loss.
Essentially, this drug is a powerful drug as the goal is to shut down the production of estrogen everywhere estrogen is made in my body. We want to do this because the cancer that is hovering in my chest area is estrogen positive to a very high degree. I’m visualizing the letrozole cutting off the estrogen supply to the cancer and thus killing the cancer.
To work through my dread, I called and talked at length with three different dear friends. All of them gave me space and held me in their well wishes as I talked through and felt the fear, worry and dread. Additionally, I did a bit of crying and I held Sam and I went on a long walk with him in the fall colors. All of that helped shift the dread. I’m still nervous, but the dread has shrunk.
To mark this 19th cancer anniversary, I went for a 4 mile run with Sam, my dog, and bought myself and my dear friend Tammy tickets to go see For The People at the Guthrie Theatre next week. When we go see this play, it will be Day 4 on this new drug.
I start the aromatase inhibitor, letrozole, tomorrow, on Monday, October 23rd. Zero estrogen in my body and starvation of those 3 teeny tiny tumors/nodules on my chest wall here I come.
I take great comfort and gain a sense of control of a very out of control, horrible situation by setting intentions and goals that are within my control. I spent some time thinking about what was in my control.
Intentions/goals going into this estrogen reduction phase
1. Keep my weight stable.
Pay close attention to my weight as I go on this drug and make sure to work with my medical team to keep my weight stable. I am very happy with my current weight and I want it to remain the same as it is. This is important for ongoing diabetes and cancer survival. Not to mention heart health.
2. Continue running 3 to 4 times a week
This will be essential to do as likely and possible side effects of this drug are bone and joint pain. Movement makes a HUGE positive impact.
3. Keep lifting weights/doing strength work at least two times a week.
I will join the YWCA Midtown in early November, there will be a price special for joining then, and schedule two weight lifting sessions EACH WEEK.
I’m grateful my friends Monica, Kirsten, Linda and Jenne all are or will be members of the YW and are willing to meet me at the YW for some weight lifting. I might feel like crap from the drug letrozole and going to lift is ESSENTIAL for bone health going forward. Making plans with friends will make it easier to keep up with the practice of regular lifting.
4. Take my daily supplements that help.
Vitamin B, melatonin, magnesium, krill, AX3 astaxanthin, turkey tail mushroom tincture, moringa, Vitamin D, Vitamin C, quercetin with bromelain. It’s a lot of supplements but all of them I’ve either been taking for a while or have started somewhat recently and all of them work in my body.
5. Keep up with my daily meditation practice – a life saving practice.
Deep breathing and tuning into the now helps keep me present, positive and connected to what is happening NOW.
6. Make every effort to get 8-9 hours of sleep every night.
I’ve got my fan in my room and I can open the window all winter if I’m having terrible hot flashes. Plus, I bought myself a new pair of bamboo cooling pajamas. They arrive this week.
7. Continue cooking and eating healthy home cooked meals every week.
I enjoy cooking, thankfully! After all, healthy, not processed food is the very best medicine of all.
8. Continue finding ways to allow more ease, connection, community and love into my life.
There you have it. Thanks for following along on this third cancer journey. And thanks for holding me in your thoughts, prayers and well-wishes. I appreciate all the amazing comments and direct messages. They all mean the world to me. I’m working on replying to you all.
I do tend to get overwhelmed easily, so it might take me a bit to reply. Know that I read them all and they create a vibe of belonging and healing.
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Saying prayers for you and sending positive thoughts. I have watched your journey and marveled at your resiliency. Your mindset has always been your super power
Norm Hull
Oh thank you SO much Norm. Your prayers and positive thoughts mean the world to me. I love seeing your art and life on Facebook!! I shall keep using my mindset as my superpower!! Be and stay well my friend!
I have been on letrozole with T1D for 2 years. No impact on blood sugar but you may feel like shit for a few weeks getting used to the letrozole. Muscle/joint pain but it goes away.
Have your doc order a sonogram every two months if you are going to monitor the tumor, mine shrunk by 50% every two months. I was ER/PR positive and HER negative and used Ibrance ahead of surgery. Pretty much killed the golf ball sized tumor that was sitting on my chest wall. Dr. Bora Lim at MD Anderson. Most conventional doctors won’t go outside of the recommended flow chart and this is a different protocol. Challenge your doctors, read clinical trials, and live!
Kathy,
Thanks again for sharing more of your story. I appreciate it. I live in Minnesota and I have an incredible team of oncologists. They are very forward thinking in their approach. I appreciate that you also have a wonderful, life saving oncology team. Your tumor situation is/was very different than mine. I have three VERY SMALL tumors, they are less than the size of a dime. They can be measured with an ultra sound, which I will have done very frequently to continue to measure the size of these extremely small tumors. Additionally, I will have PET scans every 3 to 5 months to make sure the cancer isn’t going anywhere else. So far it is NOT going anywhere else. Once we see how I do on the letrozole, then the plan is to have me take Kisqali, which is the same class of drug as the one you took/are taking, Ibrance. I happen to really trust and like my oncology team. Rather than challenge them, I ALWAYS bring a very smart friend with me to all the appointments AND I prepare a detailed list of questions. We each do what we need to do to live our purpose!
We’ve got you, Mari & you are strong, wise & an endurance athlete!
Nadine, ever grateful you are a close, dear friend. I might need a few reminders of my endurance athlete self!!!!
I’m sending only good vibes your way. You have a purpose here and I’m glad to see you embracing it. All my best to you.
Brenda, I know you get it! Thanks for your kind words.
Wishing you strength and healing on this journey. I wish you still lived in Santa Cruz so I could support you in person. ❤️
I do love Santa Cruz!! Thanks so much Melinda!!
I appreciate your courage and openness. May all the love your pour into others and the world on a daily basis come back and help you on your healing journey.
Ever grateful that you are on the journey with me dear Linda.