Susan Bottega and her husband, Bob Susan Bottega and her husband, Bob

As I listened to Esther tell her story, my own came flooding back to me. My husband was always the "tough guy"—nothing was too heavy for him...literally. He was very "old school"—wanted to be the "man" of the family—and I should be the "weaker woman." Well, that never really existed—maybe only in his head. I'm an RN with many years of experience. One might think that is an advantage, but it also has its inherent difficulties. It robs you of the time to take in what is dealt to you—you instantly know where you are and what you face. There is no time to adjust as you learn what is dealt to you.

My husband woke up one morning, and he was fine. He engaged in some strenuous physical activity, and I noticed he was breathing quite heavily. He was having difficulty breathing, and he felt a bit diaphoretic. I felt his pulse, and it was a bit thready. Immediately, I insisted that we head out for the ER. We laughed all the way there, because by this time he had recovered and felt quite a bit better. As we sat in the ER, we joked about how foolish he was feeling. Within two hours, he was diagnosed with a severe tear in his mitral valve that would necessitate immediate surgery and a secondary diagnosis of CLL. When he was given the diagnosis of CLL there was no explanation at all—just letters which had absolutely no meaning to him. I, on the other hand, immediately opened my iPad as the physician was speaking and got the clearer picture. The next few days were really tough as I had to get him through his immediate battle before even thinking about the one that lied beyond that. It was truly a test of strength to get through those weeks.

The surgery had complications, and he was in ICU for over one week. Esther spoke of counseling, which I believe is an excellent choice for assistance on this life-altering road, however, there was no time for this for me. So I turned to the best counselor I knew: God. I spoke to him each and every moment I was alone, and he truly helped me though it all.

Once Bob was discharged and on his road to recovery, we were able to discuss his secondary diagnosis. It's been a long, hard road. His disease progressed quickly, and within one year his WBC count exceeded 600,000. His face looked like a home for several chipmunks overfed with acorns, and his Hgb was plummeting. Fortunately, we had assembled a truly competent team and treatment commenced. It's been a tough road with lots of ups and downs. I would like to tell you that I weathered the storm without much damage. But the truth be known, it's taken a toll on both of us. We have grown closer in a very different way.

We have come to understand each other and to seek out each other's strengths as we needed them. Our roles have changed, and I think we have both come to understand that life is not infinite. But we do have today, and it's up to ourselves just how much we make of this day. Waste not, want not. Time is a valuable resource and should not be wasted on silly disagreements.

For the holidays, I bought Bob a gift that required him to think about something other than his health. I call it "the gift that keeps on giving"—a beautiful puppy. Beamer keeps Bob moving whether he likes it or not, and it gives us a daily focus. We are fortunate to have a large and wonderful family—lots of grandchildren and kids who are always willing to assist at any time. Every day, I try to focus on all the gifts around us and realize that while we may be fighting a huge battle, there are so many others that were unable to live to fight this battle. There is so much hope on the horizon, and this is brought to me every day via contact with Patient Power, ACOR and daily follow-ups with groups on the Internet. We are not alone in our battle and support, and knowledge is at our fingertips 24/7 via social media. One has but to reach out, and it's there.

How have you weathered the storm? Please tell me in the comments section.


Susan Bottega