Celebrate I Will
In the Spring of 2019 I spent 6 hours at my mast cell doctor's office trying to get an IV iron infusion to begin to correct the severe anemia I had recently discovered. It took over an hour and five attempts to get just the IV started and that was only the first hurdle. Over the next five hours while my body thankfully accepted fluids it rejected everything else. I even reacted to IV Benadryl, something that normally rescues me in a reaction. Needless to say I left defeated without much iron in me and I then spent the next 36 hours in an almost constant state of reaction as my body calmed down from my trial. I remember saying to my doctor before leaving, "I truly can't escape myself” as I felt an overwhelming sense of hopelessness that I would never be able to find a resolution to my problem.
It has been two years and my anemia has never improved which daily increases the stress and reactivity in my body. Thankfully, my care team agreed that we should take advantage of me being in-patient after my procedure to do another IV trial infusion. This time we tried a different brand of iron and the pre-medication was a much bigger burst of IV steroids. I was, as one would imagine, relatively terrified, remembering the two day long reaction after the last attempt. But my very patient hematology nurse practitioner (NP) never left my side over the next almost three hours as we slowly tried half of the dose and then the other half. He was positive and even a little excited for me to do the trial - promising me over and over again it would be magical when I finally got it in. I certainly didn’t share his enthusiasm- I knew my body after all and it was rarely cooperative. But I took it minute by minute, breathed deeply, colored and my friend who also came to be by my side helped distract me. And in the end, he was right, it worked and I actually got through the infusion without falling completely apart. I was a mixture of happy and stunned but also as usual, still cautious to believe I had finally found a solution. Instead, I thought about the next 5 infusions I would require to fix things fully knowing only then could this be a true victory.
This week, I went in for my first out-patient infusion. I was nervous again, knowing my body is unpredictable at best. It is very common for something to work once and then never again. This time my NP worked with the infusion nurse - advocating and explaining how to care for me, checking in regularly and was excited for me to get a second dose reminding me how magical it will feel when it is over. I again didn’t share his enthusiasm. A few minutes after the infusion began I started to react but my NP paused the infusion - I took deep breaths and composed myself and at a slower rate we started again. We took it minute by minute to get through it and in the end, I only need two short breaks to get my second infusion of iron My NP was right again.
I have for many years struggled with accepting my victories and feeling happy and excited when something good happens. I feel certain that this will jinx myself and moments later my body will fall apart. But I realize that I need to let these moments of success carry me towards healing. I need to feel the positivity and happiness that comes from actually feeling like I had won something I fought so hard for. Of course I will react again, I have not cured myself, but I have pushed myself, and asked a lot of my body, to help correct this issue and I did it-and that is worth celebrating!
When I left the hospital, I was a little bit unsteady and also worried I would still react that evening. But I also for the first time in a while allowed myself to feel victorious knowing that no matter what happens next, I had gotten through a very hard few hours, that I had faced my fears and I succeeded. And I finally, for the first time in two years, felt hopeful again that I can actually fix my anemia- that I can live with more energy daily and that my body may be able to heal. And yes, my NP was right yet again, once I allowed myself to celebrate, finishing my second infusion did indeed feel magical.
