Treatment Time

Monday, October 24, 2022

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

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