[Editor’s Note: Jennifer recently participated in some trust exercises at Flow Camp which is party to the Flow Genome Project.  Jennifer reports, “I was afraid to do this exercise [see photos] and ended up feeling wonderful!  I'm trying to learn how to go beyond the limits I have set for myself...something cancer has taught me.”  From these exercises, the following blog was born.]

“Jennifer

This past April, I was set to begin treatment with FCR for my CLL, which had been progressing at a rapid rate since December 2016.  Up until then, I had been in a watch-and-wait state and very happy and comfortable with being on the fringe of needing treatment.  My lymph nodes began expanding at such an alarming rate, and as far as I was concerned, I was no longer able to wear some of my clothes because of the discomfort—both physically and mentally.  I was beginning to become depressed and withdrawn because of my appearance and the looks of pity and sympathy I was receiving made me feel like a sick and dying cancer specimen.  So when my doctor recommended FCR with ibrutinib, I was eager for the opportunity to just look better.

During further testing, as is the course before beginning FCR, it was determined I had some gene mutation that meant FCR would be too dangerous and was no longer an option.  It would have to be ibrutinib as a single agent, which was not optimal or long term, but because of the size of my spleen and the urgency it caused I did not have many options.  I consulted with my team of CLL experts, because as I have always said and as I continue to practice, knowledge is power, and it was decided I had no other options. 

“f”

At this time, I decided to not read about the side effects or dangers of ibrutinib (Imbruvica). I was just ready and eager to start shrinking my lymph nodes.  My first night after taking ibrutinib, I woke up with my body on fire.  I felt extreme pain that resembled what could possibly feel like shards of glass traveling through my entire body.  My first thoughts were that I preferred the “elephant man” look with my large lymph nodes, and then my thoughts were that of hopelessness—sheer and desperate hopelessness—because I didn’t want to live with this kind of pain, and I didn’t want to live with my huge node appendages either.  It was the first time since my diagnosis (almost four years now) that I felt completely powerless and angry and sorry for myself.  How was I going to be able to continue my catch phrase “grateful for cancer” when I was in too much pain to breathe?  How would I be able to use my gratitude scale for this predicament?  Everything I had based my entire cancer history on (17 years and three cancers later) every positive hug and high five and blog and post would all be for naught.  I was certain gratitude was lost for me.

Night after night, I continued on the ibrutinib, and as the first week slid into the second, my lymph nodes were back to regular size, and I began to feel human and small and smooth, as the lumpy clumpy CLL began to back away from skin. The pain still persisted though not with the same degree of intense energy, and by the second week, by default, I was grateful again.  This time my gratitude had a different lens.  I was not so certain about being grateful for cancer as I had always protested, but I was absolutely certain of the gratitude I felt for the opportunity to see and feel myself and my body without my lymph nodes taking center stage. I put on dresses and wore my hair back off my neck and felt more pliable and less fragile.  I felt normal and free from my CLL for the first time in a while, and with that came the feelings of gratitude.

I often speak and write about gratitude, but most importantly I feel it, from the inside out.  I feel it and live it!  Someone recently asked me how I was able to stay so positive about a life-threatening disease that at the current time has no cure.  It made me think about why and how I am able to access the light of hope instead of dwelling in the darkness of fear.  For starters being grateful was not always my default, but I can trace it to my first cancer diagnosis of melanoma almost sixteen years to the date. My oldest daughter was four months old and was quickly becoming the love of my entire life.  And now I was living and counting in terms of months.  I wanted to be with her at 12 months, 24 months, 36 etc., and as each month passed and as each of her birthdays passed gratitude filled my heart.  At this same time, I was diagnosed with thyroid cancer and my second daughter had just been born.  Again I began to play the month to month game, this time with a bit more anxiety and fear then the last, but as time passed almost 10 years, gratitude for days spent with my girls encapsulated my entire being.

Four years ago came the CLL diagnosis. I was older, my girls were growing and thriving, and I was living the dream of growing along side of them. My CLL was a bit more difficult for me to grasp however, mostly because I was suffering from extreme fatigue. I didn’t know if I would feel awake enough to not only fight but to muster any gratitude. I started the month-to-month game again: month-by-month, I would watch my girls go from elementary school to high school, get braces on and off, score goals and cry and feel frustrated and have broken hearts.  Month-to-month we were growing up together and navigating the world of school and oncological visits.  Month-to-month, I was still alive.  What’s not to be grateful for?

It has been four months on Imbruvica, and good bad or indifferent, it was four months I lived and experienced and grew alongside of my girls; it has been almost 48 months since my diagnosis and the same is also true.  The way I see it, it’s still more months than some other people may get or have.  One of the important aspects of feeling so grateful is that I allow myself the opportunity for pity and for just feeling lousy.  I acknowledge if I’m in pain, scared, frustrated, exhausted from the fight. I let myself have my feelings, sit with them for a bit, and then think of all of the months I have had, against the odds, and feel grateful.  Letting myself feel, whatever the feelings may be keeps me real and honest and is the example I want to set for my girls. With that comes the absolute need for a recovery time, whether it is a minute a day or a week.  Recovery generates balance and feeds my gratitude.  

It is what it is, and I am what I am; a 52-year-old woman with CLL whose watch-and-wait era has ended for now.  I’m taking an expensive bone twisting and gut-wrenching medication while raising two teenage girls and living month to month with gratitude.

Grateful for Cancer,

Jennifer Zarou

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