I’ve never really thought about putting this role to paper but come to think of it, this may be a very therapeutic exercise for me. So here goes.
One Saturday morning about 12 years ago Bob and I woke up in the way we often did. I got up first, made breakfast and realized he was still in bed. I walked in and saw him sitting on the edge of the bed quietly – Bob is not a quiet person for sure. I asked him why he was still there and quickly noted he seemed very anxious. Putting my nursing skills to work, I felt his head and then realized he was a bit diaphoretic. He said he didn’t feel well – was a bit nauseous. I told him it was time to go to the ER. Bob, being an extremely tough person, quickly refused and said absolutely not. Me, being a well-trained RN, went and got my son and son-in-law both being trained first responders. We confronted Bob and said he was either going the easy way or the hard way. He seemed reasonably stable, so I decided to drive him to St. Francis, our local heart facility. All the way there, we laughed about the fact that we were actually going. Once there he was taken in immediately and within one hour he was diagnosed with a severe tear of his mitral valve, this would require immediate surgery. They were a bit concerned about his blood work which showed an elevated white blood cell count. I immediately went into my RN mindset and set upon finding the best heart surgeon I could. As soon as that was accomplished, and Bob was settled into a room in the ICCU in walked a doctor who introduced himself as a hem/onc. We were informed by him that Bob also had chronic lymphocytic leukemia (CLL). Fortunately, I had my iPad with me and quickly, as he spoke, did some research. As he spoke, he told us this really was not a big problem because this was the very best cancer that anyone could have. The next weeks were absolutely horrendous as I faced getting him through open heart surgery while dealing with the fact that he would be facing a battle with cancer thereafter. I prayed a whole lot, it was the only thing that got me through it all.
As Bob recovered, I spent most of my time on my computer researching exactly what CLL was. I quickly determined that we would not return to the nice hem/onc that said it was the very best cancer. I put myself to work finding the very best CLL person I could find and as soon as I could get an appointment and Bob was able to travel, we started the next part of our saga.
Things got much better after we met with our CLL specialist, she was amazing. But more importantly she was young and beautiful, that meant Bob would acquiesce to accepting her direction (I knew my husband all too well – LOL!). We hardly had time to adjust to all of this when things started going downhill very quickly. The roller coaster ride began. Within 12 months Bob’s numbers went so high that treatment became eminent. FCR (fludarabine, cyclophosphamide, rituximab – chemotherapy) was the gold standard and ibrutinib was only available in trial for those previously treated and relapsed.
Bob was admitted to the hospital as his tumor burden was extremely high at this time. His doctor was sure he would develop the dreaded tumor lysis syndrome and he did. I would love to tell you what my feelings were at that time, but honestly it all happened so very fast it was just a matter of one foot in front of the other while praying every step of the way. I never had time to think about what I was feeling. I was too busy trying to make things understandable to him. As I think about it now, I realize we go into some kind of crises state and just function on automatic pilot.
FCR did not work well for Bob. This was not known at the time as science still had much to do in the field of CLL. Looking back, it’s amazing how fast things changed as we traveled this road.
The next thing was a bout of pneumonia second to low neutrophils, another two-week hospitalization. Then a lull for a month or so followed by autoimmune hemolytic anemia which was coupled by Pure Red Cell Aplasia. Bob became so weak he couldn’t walk down to the mailbox without being out of breath. Transfusions became necessary and they were done twice a week for a couple of months. This entailed driving into Manhattan, sometimes a two-hour drive starting at 6 am in all kinds of weather. The transfusions weren’t too bad but the need for type and cross matching before each one required almost daily trips into Manhattan. This was finally brought under control, and he was started on ibrutinib which, by this time, had become available to him.
I’m telling you all of this because this will help you understand where all my knowledge came from. I spent day after day, night after night absorbing everything I could related to CLL. I made notes, asked questions, learned all I could about the biology of this leukemia.
It was during one of the many crises that we dealt with that I called Dr. Brian Koffman. He was wonderful and gave me so much support during the blackest of days. I had read some of his postings on various websites and he seemed to have the most up to date information, so I called him and asked for input as to what was available.
Well, that led me to my next thought. I had absorbed so much information and learned so much, it seemed to me it was time to “pay it forward”. I volunteered to be a facilitator for a local support group, part of Brian Koffman’s newly founded CLL Society. I realized that all of my experience would be valuable to many other folks. While they may never have the many complications that my husband has experienced, I realized that they might benefit from all that we have gone through. Bob has had many more complications over the years, most recently a bout of Diffuse Large B-Cell Lymphoma (DLBCL). He has been on three different clinical trials and relapsed after all of them. DLBCL was his last battle and I’m so very happy to say he seems to have won that one.
Strangely enough this journey has brought so many good things to our lives. For one thing, the group that we started has provided both of us with good friends who understand what we are going through. Moreover, our group has made Bob understand so much more about the trials and tribulations of CLL. I feel he’s a role model for newly diagnosed folks, he’s had just about every problem that he could have had and he’s still enjoying life. It’s taken a toll but strangely enough your life adjusts to your limitations. I think that’s something that COVID-19 has taught all of us.
For me, it’s given me a focus to my life. There is so much to be gained by sharing your experiences with others, both for them and for us. The folks that we have met through this journey are amazing and just knowing that we can make a difference in their lives is more than amazing.
So, in conclusion, while I’m so very sorry my husband has had to travel this road, we have received so many blessings as we made the journey. Great friends, a sense of belonging to a community, a sense of accomplishment, learning how strong we really are, moreover, how much we have to offer to others. I cherish the knowledge that I have gained, and I thank God every day for my choice of careers because it was my basic nursing knowledge that allowed me to absorb all that I did. I’ve battled for my husband and so far, I’m winning. Our relationship has grown beyond what I ever thought it could. I pray that yours will too.
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.