I don't know how many lymph nodes house malignant cells in my body. My CAT scan reports provide a representative summary of three or four nodes and highlight the largest ones. My oncologist says that its tedious for a radiologist to measure them all and whether I have four or 14, it doesn't change my treatment options. So the representative sample is what I get. I understand his point intellectually but not emotionally.
I would like a full accounting. This disease pummeled me (and my family as collateral damage) shattering any ideas I might have had about my ability to control my destiny. The last two years have been a constant lesson on accepting uncertainty - how long until the next treatment; will my lymphoma one day transform into a more aggressive form; and will I be the over or the under on the 15 years average life expectancy. Given all that, it doesn't seem like much to ask to know how many tumors are in there.
I've studied my CT scans. I've made a spreadsheet of the nodes reported on my CT scan identifying their location and sizes and changes over time. At one appointment, an eager resident counted the nodes with me. We reached 12. I clapped at finally having a number but then he pointed out how there could be many we couldn't see given the limitation of CT scans in the small bowel area. I even had my gynecologist take pictures while doing my hysterectomy last October in the hope that I might catch a glimpse of them. (I didn't.)
Inspired by my son's science fair project, I had the idea last week to make clay models of my lymph nodes at my art therapy session. I know some of their dimensions and I know there are at least 12. Maybe if I made 3-dimensional models of them, I would find some peace? With my spreadsheet and clay, I got to work starting with the largest of them. By the end of the hour, I had made six. My therapist asked how it felt to look at them. To hold them in my hands.
It's crazy, I answered. They are both bigger than I imagined and smaller than I imagined.
I realized today this is also a good summary of my first two years with cancer. On some days, my lymphoma takes up a lot of space in my mind and life. I've been battling a cold for over a week now and in bed more than normal. Just like me, my immune system is not what it used to be, and I found myself cursing my lymphoma and treatment. It has turned a simple cold into no simple thing for me. Cancer has felt very big and present at times.
But there have been many days in the last two years when it felt small, if hardly present. Vacations with my family in some of our country's most beautiful places. Getting to reconnect with dear friends who I hadn't seen in years. Seeing my oldest son navigate college and finding his way into adulthood. And countless other daily moments of living like making dinner, overseeing the boys' homework and practicing their instruments, or catching a magical sunset outside my kitchen window. There are times when cancer is insignificant.
Holding the models of my lymph nodes brought this awareness. Unfortunately, it did not bring me the peace I had hoped for (which is probably better defined as the unrealistic hope that I will be magically cured). It did not end the uncertainty of my future with this disease. But it did remind to hold onto those moments when my lymphoma feels small because they will fortify me for the times when it isn't.