Day +26. All of my counts are still on the rise. My hematocrit has broken 30% and will hopefully continue upwards! Normally hematocrit (the percentage of your blood volume that’s actually red blood cells) should be between 40-50%. Plus, I didn’t need a neupogen shot today. I’m a happy camper.
Warning: this is a sorta long, not so happy post. Read on as you please.
This past week I’ve been dealing with a lot of really difficult, hard emotions brought on by the consistent reminder from my currently weak body that 1) I’m still sick, 2) I’m recovering very slowly, and 3) I can’t physically do as much as my brain thinks I can. [[Side note: I know I shouldn’t be complaining considering how well everything is going, but hey, I’m human and I can feel these things, thanks.]] Like, come on body, get it together. Walking three miles and going up and down 5-8 flights of stairs isn’t that hard, right? Okay, okay, I’m asking a lot of my body too soon. I get it. I guess I’m not as patient as I thought I was.
The things that have been getting to me the most though have been thoughts of what this sickness has taken away from me this past year. For starters, I’ve lost a year of my life. A year of birthday parties, housewarmings, celebrations, fun nights out, meeting new friends, cherishing old friends, dancing the night away. A year of work, scientific progress, plans for the future (this is a big one). You might be saying, “But Min, a year is such a small amount of time in the grand scheme of things.” Yes, you’re right. But let me explicate further.
A year of hospital visits, awaiting lab results to determine your fate, bone marrow biopsies (these really hurt), being pricked and poked and prodded, chemotherapy, total body irradiation, shots, more shots, so many days of fatigue and malaise, mental fogginess, chemo brain, the list goes on.
A year of anxiety, uncertainty, countless nights of crying myself to sleep, countless days of feeling nothing because to feel means to hurt and I’d rather not hurt anymore right now thanks, and all of the questions, “Why?”
You see, though, I’m a tough cookie. Ask any of my friends. (But I don’t bake tough cookies! Ba-dun-ch!) I can handle all of this. The physical pain, not a problem. Emotional hardship, I can do. The crippling, oh-my-God-this-is-real-and-I-can’t-do-anything-about-this-why-won’t-the-tears-stop-running-down-my-face, hits you below the belt pain, the true pain, for me, comes from knowing that as much as this has been affecting me, I can’t even begin to fathom what kind of toll all of this is taking on my loved ones.
A year of anxiety, uncertainty, countless nights of crying themselves to sleep, countless days of feeling nothing because to feel means to hurt and they’d rather not hurt anymore right now thanks, and all of the questions, “Why? Wait, what? How? What is going on right now? What do you mean another blood transfusion?”
I’m so incredibly lucky and grateful that my mom is here to take care of me. Despite her not fully understanding everything that’s going on, she knows one thing is true: feed and take care of my son and he’ll get better. So far, so good.
I’m also really fortunate to live in an apartment with amazing roommates and a guest room where my mom can live comfortably with her own space. Granted her and my rooms are right next to each other so sound seeps between the wall we share – there’s nothing more heartbreaking than hearing your mother’s muffled cries late at night. As if messing up my life for a year wasn’t enough, this sickness is wreaking unknowable amounts of havoc on other people. Wtf!?
Whenever I find myself in this thought hole, which has been happening more frequently recently, I have to trust that no matter what pain or hardship anyone is dealing with, they’ll get through it because that’s what we do. We press onward. Though I hate to cause any of this, they’ll survive. Because I’m surviving and getting better each day, there is a light at the end of the tunnel. There will be a day (hopefully soon) when all of this will be the past, and I’ll have encouraging stories to share with others over cups of tea or coffee and yummy baked goodies about this wretched, year-sucking, life changing experience that I quite frankly don’t even wish upon my worst enemies. And I’ll be grateful.
As for now, finding goodness in anything turns out is really hard to do when you’re dealing with a life threatening illness. But I’m trying my best.