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Finding Support in CLL Society as a CLL Care Partner

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By: Susan Bottega

As a caregiver to my husband who currently has three cancers, I can truly say that the most significant help I have gotten has been from CLL Society. The life of a caregiver becomes significantly more lonely as the disease progresses. You start out just fine and probably remain so if the disease does not progress intensely. This, however, was not the case for my husband. His disease started to advance quickly, and he developed many complications as time went by. This changed my life in many ways as a caregiver.  

My first change came about as I delved into the science behind CLL. I was initially told this was the “good” cancer and he would probably live his full life. Actually, in hindsight, this was half true – as Bob is now 80 years of age and he’s making breakfast as I type away. The other half was another story – his “full life” has been altered in so many ways and mine has as well.

The beginning years for me were spent immersing myself in the world of CLL. I read as much as I could and absorbed so very much of the science of CLL. Most of this was done in the evenings – as Bob watched TV, my fingers were attached to my MAC. Google Scholar became my online library. It definitely helped that I was an RN and had a good background in science. My early nursing years included Oncology and HIV. This was definitely a huge advantage that I had in my studies. All those organic chem and A&P (anatomy and physiology) definitely resurfaced in my brain. What I didn’t realize is that none of this did much to advance my social life. Friends get pretty bored with you when all you are interested in is science. 

Bob’s flavor of CLL quickly advanced and then my studies brought me to the world of clinical trials. I would spend every night searching through anything that would keep him away from the dreaded ‘chemo’. His doctor worked so hard to keep him from treatment – ibrutinib was there, but not yet for Bob. He was ‘treatment naïve’ and the only trials available were for those who had progressed after treatment. Every visit brought Bob’s counts up higher and higher. His head began to resemble a bloated balloon. It was his ‘weakness’ and anemia that told us treatment was imminent. The day came when it was time to decide – we tossed the proverbial coin and FCR won. The choice was actually made after much study – FCR was the gold standard and was experiencing long remissions. Bob was a very strong person and I knew he would get through it – beyond that, very little was known about the long-term complications of FCR.

Bob sailed through his treatments amazingly well. He immediately began to feel so much better and life was looking good. Plans were made to enjoy the life that lay ahead.  Or so we thought. About six months into his recovery things started to go downhill yet again. Bob developed anemia. It went downhill very quickly. His amazing doctor was right on it. It wasn’t long before he became transfusion dependent. Along with the anemia, he was diagnosed with Pure Red Cell Aplasia. This was a double whammy – he was unable to produce adequate red blood cells. He required transfusions twice a week. This required trips into Manhattan to NYP every Monday for bloodwork, Tuesday for transfusion and Wednesday was our day of rest. Thursday for more bloodwork and Friday for another transfusion. After several treatments, he finally got to the one that worked – ibrutinib. 

Getting back to my life as a caregiver – wow, life definitely changed significantly. Now I lived in fear of losing the man who was supposed to be my life’s partner to the end. The travel and plans of winters in Florida gave way to trips into NYP. His doctor became my best friend and our social life became the members of our team. Thank goodness they were all amazing folks who we laughed with on every visit. I couldn’t ask for better friends to share this journey with. 

About this time I received an email from the CLL Society. They were looking for volunteers to facilitate support groups. The idea of in-person support groups was an amazing idea to me. Here folks could find others that were living the same “dream” (LOL!). I filled out the application and before I knew it, I was on my way to California. This worked out really well for us as our son and his family lived there – worst case scenario was a chance to visit with our family. We took the trip together and met with Dr. Brian Koffman and his team. I was so impressed with the program – the thought of bringing people together to share this journey was exciting to say the least. This was something I could definitely do and here was an opportunity to share all the studying that I had done over the past years. What a fantastic idea this was.

We came back and I started our group along with my co-facilitator Deb. Fortunately, I had lots of knowledge to share but lacked enthusiasm for organizational skills. Deb picked up there – she was a whizz at finding a location for our group and made sure all the startup paperwork was completed. Our group flourished – folks came and went as they needed but we developed a ‘core’ that stayed with us for what is now about six years. Our friendships grew as we all shared our journeys. Our knowledge grew as well. Each member had a different story and their particular ‘flavor’ of CLL was different. We pooled our experiences and together had so much to offer new members as they came.

This became a big focus of my life. I had time for this because here was something that actually fit into the life that was now mine. Over the years we have helped so many folks but here was the surprise – in helping others, I found the help that I needed to fulfill myself. This was so much better than the ‘fun’ life that I thought we were missing. Making a difference to others was so much more fulfilling than anything I had imagined in the past. This was my calling. 

Besides this, there was the friendship of Dr. Brian Koffman. Brian was always there when I needed support. As I said in the beginning, Bob’s CLL has never been a simple case. Over the years so many complications developed. There was always the knowledge for me – Brian and the CLL Society were always out there working to ascertain the newest breakthroughs.

Our journey continues – Bob now has three cancers to deal with but my life as a caregiver is full – it’s full with the love and care that I can share with all of my CLL Society support group’s members. My knowledge and the love I have for our members give me a sense of fulfillment that fills my heart with joy. So, yes, it has been the CLL Society that has given me the most crucial support in my journey – they have made the difference.

Susan Bottega – Bob and I have a combined family of five girls and two boys. Our grandchildren number fourteen – needless to say we have been very prolific in our lifetimes. My careers have been many in number over my lifetime. I have owned and operated a lucrative business, I have been a Pan Am Flight attendant and ended my working career as an RN. Bob also has know several careers in his life but his passion has been law enforcement. We came together after losing both of our spouses to illness so we both had a good idea about the role of caregiver.

CLL Society - Living With CLL

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