I've had the most boring of days these past few. Just laying around all day, consuming calories, multiplying cells, growing an immune system from scratch. Neutropenia, as it turns out, is a very strict b*tch.
When in severe neutropenia (don't google it), I have to make sure that I live like anything that touches me could make me sick. I requires the services of a sister, a husband, a cleaning crew, a doctor on call and a pair of fuzzy slippers. I get a wardrobe change twice daily and eat off menu. I can't have fresh fruit or vegetables, and only meat which has been roasted or boiled to the consistency of a yoga mat. Only reverse osmosis water. No nuts, berries, dairy, sliced meat or runny eggs. It really isn't that bad, and it's only while in severe neutropenia. I'm really not set up to complain about anything happening here.
I have been reserved in my complaints. I came in expecting much worse. And I have been overwhelmed in the humanity infused in the Mexican method of this transplant.
It's been worth it. 30 days for 30 years, says my husband.
But the worst side effect of neutropenia is time. There are no pills for thinking-while-fatigued-post-chemo. I have to admit that in the lowest moments here, I've doubted myself.
Let's take a ride on my cerebrum for a moment and tour my daily affirmations.
Daily reminder #1: There was no other decision. The drugs offered to me didn't stack against the data that this one-time procedure has proven. I'm young, you guys! I have two very active kids, date nights with Matt to get back to, girls nights, volunteering. I know many MS warriors and saw my future. I needed to get ahead of this.
Daily reminder #2: Keep the naysayers out of the orchestra section. Remember how incredulous you were when one doctor said "we have drugs to make you comfortable" and the other who said "wait until you're in a wheelchair before you do this". I needed to get ahead of this.
Daily reminder #3: In a short time, this will be a 2nd line treatment for MS in the U.S.--dare I say even a 1st line treatment someday--and it won't be such a strange/traumatic sounding option. And I will be able to be someone's mobile cheerleading squad. I'm honored to be the metric for the next person who needs to get ahead of this.
Daily reminder #4: FaceTime the girls and get a visual reminder of why you're here. I've had breakfast, dinner and bedtime with them everyday. They ask details about my treatment so they know what to expect. When my hair started falling out and Cheryl shaved it for me, they cheered for me. Sissy wants to shave hers too. They keep wondering if my eyebrows will be next (spoiler alert: yep).
Daily reminder #5: Pick up your phone, read all the texts, emails, fb posts. Listen to your voicemail. You have messages from your world-wide village reminding you of #1-#4. Tell them all how much you love them.
You guys.
Comments