My lymphoma will require regular CT scans for the rest of my life to monitor the growth of my cancer. Even though I've had six scans since my diagnosis, the one I just had in early April was the toughest. Not the scan itself. While pricey, it costs $20,000 though I only pay a $200 co-pay, the scan is pretty uneventful. Drink two bottles of a chalky barium liquid, wait an hour, insert IV for dye contrast and then about 10 mins of scanning.
The scan date had been on my calendar for six months since my last one which surprisingly had shown no growth. As the date approached, my anxiety grew exponentially with each passing day. I might have gotten lucky in November but I didn't expect that would happen again. The effectiveness of my first treatment averages about 18 months and I was at month 16.
In the week leading up to the scan, I was awake more than asleep at night. While tossing and turning, I'd plan for the worst case scenario that I immediately need to go back into treatment. I would visualize hearing my doctor say that the cancer was back and then see myself back in the chemo chair and then back in my bed for days on end. I would start to work though the logistical plans of what help I would need to care for the boys after school and how to manage their fears that my return to treatment would bring. This weighed the heaviest on me. I had recently overhead my youngest sons talking to each other after an ad for a lung cancer drug came on TV. My middle son said, "I hate this ad." And the youngest concurred saying "It reminds me when Mom wasn't here." In those nighttime hours, I would try to figure out how this time I could make them feel I didn't disappear into the fog of sleep and fatigue that the treatment brings.
The morning in my doctor's office as he delivered the scan results, I was surprisingly calm. I suspect I had expended all the energy I had with anxiety and worry these last weeks that I had simply had nothing left. My doctor started with the good news, I did not need to go immediately into treatment but the bad news was the largest of my lymph nodes were growing again. If they continued at this rate, more treatment would be required in three to six months. Seeing my crestfallen face, he reminded me that this is the nature of my cancer. It will slowly grow and we will knock it back again and again. We will keep using a treatment until it stops working. Each treatment will eventually stop working because cancer is crafty like, that but he reminded me there are more treatments options and new ones each year. All these treatment options are a reason to be optimistic but the reality is this will happen for the rest of my life and each successive treatment will extract more from me to slow the malignant cells' growth.
This scan, almost 18 months into my life with cancer, was the harder than the rest because it has truly sunk in that this is my life. From now on, I will have cancer and the path ahead of me will have more treatment and less quality of life. That's the price for getting to stay here on this earth and frankly, while I'm grateful to be alive, that price tag sucks. It feels totally unfair and unjust, but it doesn't change the fact that I have to pay it.
And right now that payment, while significant, is largely emotional and physical. But as the House GOP rammed through their tax cut disguised as a health care bill yesterday, I now have to worry about the financial costs. I've been incredibly lucky to have excellent health insurance paid for by my husband's company. He is one of the partners of the company and even before I had cancer, he and his partners prioritized a good health care plan for themselves and their employees over a better bottom line. I cannot imagine what it feels like to be facing a cancer diagnosis without insurance. Cancer sucks without having to worry about how you are going to pay for your extremely expensive care that will keep you alive. (The tab for my care so far is at about $400,000 and without treatment it would be $50,000 a year just to monitor my cancer going forward.)
The picture in the Rose Garden of House GOP reps smiling and slapping themselves on the back for supporting a bill that hurts so many people is hard to take. There are Americans right now in chairs with chemo dripping into their veins, lying on tables preparing for radiation treatment and in life-saving surgeries who now have new worries about if they will be able to get health care ever again. They don't need another thing to worry about - their plate is full from taking care of themselves and their families.
I'll be making phone calls and writing letters to my senators hoping they will act with decency and humanity as they move the health care bill forward. Despite what some GOP representatives might say, getting a life-threatening disease is beyond a person's control. Illness does not only strike those who have made bad choices or who didn't live a "good life."
A cancer diagnosis alone is devastating and takes a tremendous toll. The America I want to live in, and that I believe still exists, recognizes that burden on the sick and asks how can we all support each other to share that load. I'll continue fighting for that America and I hope you will too.