Hopeful Victories
cI could feel my heart racing and throat tighten while the world got muffled a few minutes into my fifth iron infusion last week. I'm used to an initial reaction and taking a short pause to allow my body time to regroup before beginning again without issue. This time I tried to ignore the slight nausea and slightly increased heart rate I felt fifteen minutes after pausing and I asked to restart the infusion. I had after all, already had this four other times successfully so I was sure it would be fine. A few minutes later the reaction came on stronger- taking my breath away and making me dizzy. I could feel my stomach hurting and mouth feeling like I swallowed cotton balls. The iron was stopped and in my fuzzied state I tried to explain to the nurses what I needed to treat my reaction. As they asked me a few times what I was feeling exactly I struggled to describe why I didn't have a rash - their "normal" sign of a reaction. I tried to explain that speaking and making coherent sentences are challenging when your body is spinning out of control. Thankfully, they got the medications I needed and in time, my reaction subsided.
I am used to medication failures though I realize now they are usually with my mast cell doctor who understands me and knows exactly what to do. What I am also used to after a failed treatment is a cascading feeling of hopelessness. Feeling like my body was against me and that I now had to start from square one. As I was waiting for the reaction to resolve my blood work taken before the infusion came back and for the first time ever I was -dare I say - normal? The iron would have been good to get but it was no longer critical. This time instead of becoming a heap of tears at my failure I cheered- I didn't even need the infusion! And for the first time in a long time I felt like my body was working with me - not against me.
It is easy to think about my body as something separate from me. I am often at odds with it and I constantly struggle with trusting it. And yet my body and I have conquered a major problem together- the iron infusions gave my body the boost it needed to start making hemoglobin and after almost three years I was no longer dangerously anemic. A few hours later I also received the good news that my covid spike antibody test came back positive meaning the vaccine worked! I had built immunity even with the many steroids I had to take and again it felt like my body was working alongside me. A true victory - knowing how defeating it would have been if I had gone through the entire vaccine process and did not make immunity.
I am the most hopeful I have been in a while about my healing. It feels painfully slow most days but I am grateful that even though I am moving at my own speed my body is still able to slowly resolve these major issues. Of course, two victories does not mean I have crossed my finish line as many more hurdles are awaiting me as I work my way down my large list of things to tackle. But I feel more optimistic that a resolution may be possible and that my body will not forever be my enemy- but instead my teammate.
As the fifth anniversary of my Mother’s death also passed by me this week, my final stop on this crazy month of May, I thought about how far I have come since she died and how happy I know this would make her. In many ways my own recovery really began after her passing largely motivated by watching how quickly life can be stolen away. I also thought about how much research has advanced and how much more we know about the treatment of both mast cell diseases and bleeding disorders. It is too painful to spend much time thinking about if she may not have died had we known what we know now even just five years later, though it nags at me often. I am instead trying to remain optimistic that if so much could be learned in these last five years- that these next five are sure to hold many more. For I know this is what she would be most excited and hopeful about too.
So today, as another May comes to a close, I am grateful for my recent victories, for my body working alongside me, for feelings of hope as I look to my next challenge, and for knowing that my Mom, wherever she may be is forever cheering me along.
