Treatment plan thus far- Neutropenic medications – antiviral, antifungal, antibiotic- these medications would keep me “safe” in the world while we were working on a diagnosis. And STEROIDS- to aid in whatever inflammatory process was happening. Honestly- steroids are just a “go to” drug. Health care providers give them to almost everyone because they work on everything. They will make you feel better, but they can sometimes hide a disease process. The doctors knew that my fever improved with the medications, but we still did not know why I had gotten so sick. We were essentially waiting for tests to come back. Fortunately, I can go home and do that.
It had been a hell of a week. It had shook our little family to the core. We live in a relatively small town in the south and have for 12 years. And it is a beautiful, wonderful, family oriented, God oriented place and I love it. I have neighbor’s that my kids call Nana and Poppa, and friends’ children that I am an “Auntie” to. They love us and I love them. Our community has been integral in our ability to cope with this difficult time. I owe so many my deepest gratitude. From the many meals that have been brought to our door- (by people I don’t even know) to offers of playdates and babysitting to help give our children a safe place to go so that my husband could be at my side (yes you probably have cancer, no you don’t! gets really hard to hear by yourself). And prayers- so many churches no matter what denomination or religious affiliation (and remember this is relatively close to the election)- it didn’t matter. I am privileged to have felt such a sense of true human spirit, kindness and love. And I felt God’ s presence. Really. I don’t know how you could miss him. Whenever I got a piece of hard news, it was like I was immediately supported by my friends and family (and I had not even been all that public with my story at that point). The love would just start pouring in. And I needed that. It kept me rolling. Because there were some dark times and mentally it can do things to you.
So New Year’s Eve there was a party in my hospital room as I waited for my for IgG infusion (another magic medication that is useful in all sorts of situations) and I had 2 of my best friends with me. We have known each other less than 8 years and 3 years respectively and I am so lucky to have them. And we sat and pondered the future. I knew that I could tell them anything and I knew that some of it was really scary for them and me. I knew that I could ask them to help my husband learn to braid hair and to keep an eye on the boys. For today, tomorrow and even many years into the future. Not to let any of my children forget what it was like to have a woman around. We are friends because of our children (I have another super human power that has allowed me to create more than one human at a time- fortunately I am not alone in this super power. My “twins and higher order multiples group” are my besties and 4 of the most beautiful families and women that I otherwise would not have met. So really, our children made us friends). These are some of the most amazing women that I have ever met. So amazing that one of them even came back to the hospital the next day and sat with me while I got another infusion. New Years in the emergency department- I DO know how to party.
This post is a post of gratitude. Deep, resounding gratitude for every prayer that has been said in my or my family’s name. For the warm meals, giftcards, playdates, car rides that have been given. Texts and messages that were sent at just the right time. You have each made a difference. There have even been a couple of units of blood donated- in honor of me. And I would encourage all of you to listen to that voice that encourages you to love thy neighbor. ALL- thy neighbor’s out there. And when you pray, remember that there is an opportunity for an action to support that prayer. 10 minutes may mean nothing to you, but could make a shut-in’s day. If you are healthy and strong- a unit of blood will mean nothing to you, but could mean the difference between life and death to someone else. Trust me I know.
It is difficult facing the uncertainty. There is no treatment plan for it. I think that what is just as hard is that very few people can identify with you . We were a whole week (!) into this and I didn’t have a diagnosis. I didn’t have anyone I could begin to discuss what it was like, there was no ribbon that was made to signify the fight I was fighting. So #teamrainbowglitter was born. A whole lotta spunk- and who doesn’t love glitter and rainbows?
Our #teamrainbowglitter toes.