A long story

Long Beach 11.2016With my sister Sarah’s help, I sat down on the bench. It was chilly in the late afternoon, and it was getting windy. We’d been on an errand, and we stopped at Long Beach, a calming place for both of us. It felt good to just be for a few moments.

A few days earlier, during Thanksgiving week of 2016, I had been in Stony Brook Hospital being treated for heart failure. It has been a long, hard year since this picture was taken.

What was I thinking as I sat there? I remember feeling tired, and weak, and so very sad. I was probably thinking how nice the sun was, and how warm I felt in my coat and scarf and hat. I know I was happy to have my sister by my side, and grateful for her care. Other things, bigger things, were too much to think about right then.

Since my cancer treatment in 2008, I’d known that my heart could be damaged by the chemotherapy, and it was a risk I understood from the beginning. I’d begun to feel sick and breathless a few months before, but it took a long time (and a lot of insistence on my part that I “just had asthma”) for my doctor to figure out what was going on. When she did she sent me straight to the ER.

The diagnosis of heart failure and cardiomyopathy scared me to death. It could have meant that I would end up disabled, unable to work, or worse. I couldn’t think clearly about my future, because it was all so unknown. I had the same numb sense of what was to come that I had when I was diagnosed with uterine cancer. I’d fallen into a deep, dark pit. Doctors and medicine and my siblings and friends were there to help me, but it was going to be a long, hard climb climb out.

One thing I knew for sure: I do these things – these life-altering crises – by keeping on, just going forward.

Little by little, I felt stronger. I went to work for a couple of hours, then three, a few times a week. I needed help with everything, and Sarah assigned tasks to everyone who visited. After a couple of months, I didn’t need to wear the portable defibrillator vest any more. That danger had passed. The medications were working, my blood work was stable, and I kept on the slow climb. It felt good to be able to do some living, but I still struggled with the idea of my future. It was still dark in that pit.

In February, my cardiologist noticed an abnormality in some of my blood work, so I was sent to a hematologist. It could have been a lot of things, so I had more blood work. No answers there, so more. And more. And finally, a bone marrow biopsy.

And there I was, just getting used to living with heart failure. I was too tired to fight, but tired of being scared. Although I wasn’t physically alone, I was alone. It was dark in the pit, too.

The diagnosis was T Cell Lymphoma. Not good. I was sent to Sloan, to see what the “lymphoma guy” thought. I was terrified. I was lost. I know I knew how to do this, but I didn’t think I could.

While all this was going on, my big brother died shortly after being diagnosed with lung cancer. I didn’t have the energy to travel to be with him and my family, but in the end it was all right. I loved him and he knew it, and my family made sure they carried me there in their hearts.

After a lot of genetic testing the diagnosis was a T Cell Lymphoproliferative Disorder. Try saying that three times fast. Not a deadly cancer, but one of many disorders that share genetics with lymphoma, and maybe caused by all that chemo. It’s just there, not doing anything, and regular blood work will make sure.

That was in the Spring. It was too much, and sometimes it still is. It’s been a hard year, but I’m finally writing about it. This long, long story has no ending – it waits here now, for Christmas, for next year. For later. The climb out is slow, but steady. I am a very patient patient, and the bench at Long Beach is there whenever I need it.