It was five summers ago when we found out my husband had blood cancer, the kind for which we must “wait and watch”. As two people who always plan ahead and prefer to take care of things right away, the waiting without a plan of attack was the hardest thing. Life was going exactly as we had planned- we raised two great daughters, had one grandchild, and we were looking forward to more. We were very close to retirement and had so many other things planned. I remember feeling so sad and scared. How would we tell our daughters that their dad has cancer, and that there was nothing yet to be done?
So, we started the search for second and third opinions and started to understand the CLL journey. For me, I wanted education and support and found a support group through the CLL Society. My husband, however, did not want to go. For me, it was helpful to be able to talk to other people that were experiencing similar things, but he refused to attend, as he is much more private and was not comfortable seeking out a group setting. We are continually learning that we will cope differently with his illness.
So, we waited…and we watched…and we waited some more. Three summers ago, he began to feel unwell. He was sleepy all the time, so unlike himself. He seemed like a different person, and we had a gut feeling that the labs for that visit would not be as good as they had been so far. That’s when he began treatment for his CLL-associated hemolytic anemia. Two and a half years ago, one day before our youngest daughter was going to deliver her first baby, he finished treatment. Thankfully, he has been doing well since that time. We were able to travel and enjoy meeting our second granddaughter and continue supporting our children, despite a CLL diagnosis.
Then, Covid hit. Another obstacle in the way of our retirement plans. As a family living with CLL, this was a scary time, we couldn’t simply follow the generic guidelines put out, even after vaccination. We remain in a unique scenario navigating some of the restrictions, precautions, and isolation. And during all this time, as a care-giving companion, I am still planning everything up until the next appointment, every 3 or 4 months. I’m always wondering when the next treatment will be. I’m always on the lookout for new symptoms. I keep looking at his face color, checking to see if he looks grey again, hoping the gut feeling won’t return.
And yet, we haven’t had to start treatment again, and we are very grateful for that. We have a great support system in our daughters and sons-in-law, and we are very grateful for that. We love watching our granddaughters grow, and we are very grateful for that. We keep making plans, and we are very grateful for that.
Life is good, even with CLL.
Victoria Yasova is the spouse of Morris who has been living with CLL for 5 years. Victoria lives in Oldsmar, Florida. She has two adult daughters. She worked as a Physical Therapist for 40 years and recently retired. She enjoys the outdoors, gardening and spending time with her family.
Originally published in The CLL Society Tribune Q4 2021: Caregiver Edition.