My monthly Orencia infusions for my Rheumatoid Arthritis (RA) bring me to the cancer center of a local hospital on a regular basis. The environment is warm and friendly, with a mix of all ages and varying states of illnesses. The nursing staff is welcoming and good at what they do. Sometimes the IV goes well, sometimes it is the worst moment of my month. But that is to be expected.
What I did not expect was to feel uncomfortably conflicted when something wonderful happened. As you may know, it’s the custom in a cancer center for someone who has just finished their cancer treatment to ring a bell. The ringing of the bell celebrates a victory – and is a celebration of life itself. Someone celebrated that victory while I was receiving my Orencia infusion this month. I was happy for her. She said it was a struggle, but now she was done with the treatments and could direct her energy elsewhere.
That’s when this thought hit me as if I had walked into a wall. I would never be finished with my treatment. Or able to direct my energy elsewhere. There is no end to treatment for RA, therefore no opportunity to ring the bell. There is only transition from one horrid biologic medication to the next – stronger and with more damaging side effects. All with the intent of keeping joint and organ damage to a minimum. The side effects are concerning, but not a certainty. The damage that untreated RA can cause is a reality. That’s why we continue pumping all those chemicals into our bodies. Infusions for RA are also chemotherapy. Yet I’m ashamed that I went from celebrating with this lovely woman to wondering where the celebration is for RA patients. Cancer is a horrible disease. And so is RA. I think of this woman often since then and am sincerely happy that she fought through the chemotherapy and radiation. And those of us with RA also need to fight through our treatments – and also to celebrate. Where’s the bell for us to ring?
I will keep the sound of that bell within me as a celebration of life. A celebration of my ongoing daily victory over RA. A celebration of all our battles with RA, no matter how small the victories. Some days a victory will simply mean getting out of bed. Other days a victory will mean opening the peanut butter jar (with the help of a device that does the gripping for us, of course). Or hiking on vacation. We all do what we can, when we can.
We are all RA champions. We deserve to celebrate our victories, too.