The Midlife Fashionista: breast cancer

Treatment Time

As you may know, I started treatment for Chronic Lymphocytic Leukemia (CLL) last week. I've been grateful to remain in a "watch and wait" for the past four years, but honestly, it hasn't been as good as it may seem. I felt like I was walking on eggshells, not knowing when my health would go south. Imagine living with cancer, but not doing anything about it!

A few months ago, it became apparent that the time had come for treatment. My white blood cell count (WBC) hit 345,000 (cancer cells), my bone marrow was at 90% cancer, and some of my other numbers bottomed out. Although there is no cure for CLL, there are treatments to keep it at bay and even catapult a remission (I'm hoping for that!).

I had the option of choosing between a trial and a standard treatment at Dana Farber in Boston. After digging into the research and speaking with doctors and other CLL patients, I decided to go with the standard protocol, a combination of Obinutuzimab (infusions) and Venetoclax (an oral drug). The treatment begins with infusions that happen over six months, followed by the oral drug which gets introduced three weeks after the start of the infusions and carries over for the duration of the year. At the end of the year, a bone marrow biopsy determines if remission is achieved. Patients on this treatment plan with my cancer markers, have an 80% chance of going into a remission for 5+ years until they need additional treatment. These drugs literally blast cancer away like dynamite.

Let me back up to tell you that I'm the type of person who doesn't even like to take a Tylenol! So the thought of pumping my body with toxic drugs took quite a bit of processing. I had to shift my thoughts and look at the treatment as a "GOOD THING", instead of something harmful. Gratitude helps too. I'm grateful to live near excellent medical care and have access to cutting edge drugs that could put me into remission. I'm also grateful for the support of my husband (who is incredible), friends (old and new), family, support groups, and community. When life throws you lemons, squeeze some lemonade.

And of course, I want to LIVE! After all Penny needs her Sue-Sue, and I have lots of memories to make with my amazing kids and family.

I started the first two infusions last week, and although the experience was far from fun, I got through it. I did have a few bumps though, including a rapid heart-rate that caused a pause in the treatment. All went well until Saturday when high fevers, uncontrollable shaking, and major fatigue set in. The drug almost worked TOO well, creating a horrible inflammatory response in my body. Imagine, 345,000 cancer cells dying within 24 hours releasing toxins in the blood! This was NOT what I was expecting.

Although I had a 4:00 a.m. ER visit last weekend and I'm still feeling HORRIBLE, I'm hopeful that the side-effects will pass over the week. If things don't improve, a hospital stay may be necessary. Fingers crossed that this is transient.

Living with cancer and now dealing with treatment, has given me a personal understanding and deep empathy for what cancer patients go through. It's hard, very hard. When people say, "you have the good kind of cancer", "just live your life", or "you're lucky it's chronic", quite honestly I get pretty angry. There is NO good cancer and chronic diseases mean that there is no cure. The anxiety and stress of having cancer (or any serious illness) is overwhelming. No judgement please--just support.

If you or someone you know is impacted by cancer (all types), please follow Kicking Cancer in Heels on Instagram and Facebook. I co-founded this positive and hopeful community with the amazing and inspiring patient advocate Michele Nadeem Baker. One of the gifts of the pandemic and CLL has been my special friendship with Michele and connecting with women all over the country sharing our cancer journeys and supporting each other,

By the way, I took comments off this blog because I'm having a hard time managing everything. But please reach out to me on Instagram and Facebook. I love hearing from you! I also hope you'll subscribe to my blog to stay in touch. The mobile version has the sign-up link at the bottom of the page, and desktop has it at the top.

Thanks for stopping by. Here's to a cure for ALL cancers!

With love,

xx Susan

Monday, October 24, 2022
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He's my one

breast cancer

When Susan G. Komen reached out to me to help them spread the word about breast cancer, I wanted to be involved. It's personal.

Did you know that women in the U.S. have a 1 in 8 lifetime risk of being diagnosed with breast cancer, but men can also get breast cancer?

In 2019, 2,670 new cases of male invasive breast cancer will be diagnosed and 500 men will die from the disease.

Unfortunately, my dad (Jason) was one of those men.

He is my "one."

On this Father's Day, I want to share my dad with you.
Jason was a brilliant Harvard graduate who started out as a pre-med major and later switched to education. He taught middle school English for over 40 years. He was funny and fun--crazy and silly and loved the outdoors. He walked for miles every single night. Even in the worst of weather, he walked. He walked in the middle of blinding snowstorms, oblivious to the conditions. He walked until he could no longer.

In 2010 my father was diagnosed with Stage 4 male breast cancer. It came out of the blue and was a huge shock to my family. He had complained of having various aches and pains, but refused to go to the doctor. As a matter of fact, he NEVER went to the doctor--he didn't even have a primary care physician! So when he finally asked me to take him to the emergency room, I knew it was serious. But when the doctor told us that he had stage 4 breast cancer, it was like a bad dream. Where did this come from? How did we miss it?

Turned out my father had been hiding the cancer from us for years. He discovered a lump, but never mentioned it to anyone. Not even my mom. In the beginning, he thought the lump would go away. But as it got larger he realized it was cancer. He always believed that the body healed itself. He never took medications and successfully conquered colds, flus and even pneumonia with fresh air, good food and lots of vitamin C. But unfortunately, his cancer needed medical treatment and it was too late by the time he went to the doctor. The cancer had metastasized.

Dad used to put his eyeglass holder in his shirt pocket so we wouldn't notice the lump in his breast.

For three years, he was kept alive with radiation and chemotherapy. He actually had quite a good quality of life doing the things he loved.

We were blessed that he was able to be at my daughter Alyssa's wedding . He even boogied on the dance-floor!

But in April 1, 2014 the cancer won out and he died peacefully at a hospice center.

There isn't a day that goes by when I don't think of him. Father's Day is especially hard.

It is so important that cancer research is a top priority and that we come up with new and more effective treatments to combat the disease.

Breast cancer doesn't discriminate. It affects the young, the old, men, and women. That's why Susan G. Komen is on the frontlines of the fight against breast cancer. I hope you'll visit Susan G. Komen to learn more about their work in advocacy, research, education, and treatment assistance.

We all have our "one". The person we want to protect from breast cancer. Who is yours?

Happy Father's Day Dad.

xo Susan

Thank you to Susan G. Komen. for kindly sponsoring this blog. All opinions are 100% honest and completely my own.

Saturday, June 15, 2019
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