Cancer, Multiple Myeloma, Multiple Myeloma in your 30s

We’ll All Float On Okay

In December when my doctor told me about the abnormalities in my blood work, I didn’t immediately have a reaction to the news. I stayed numb for a few days, and then as the two weeks passed between my appointment in Columbia and my impending appointment at Emory, I grew increasingly anxious.

I started thinking about what might happen if the cancer was already coming back, which led me to think maybe I’ll never really be better, and eventually my thoughts became pretty grim. I started to wonder if I’d die before Olivia could really remember me or know how much I love her. I know that’s morbid, but I feel like if I’m writing about my experience, I need to be honest with people about it.  I try to stay as positive as I can, but in some situations it is impossible to stay positive 100 percent of the time. I don’t spend much time dwelling on the negative because that won’t benefit me at all, but I do have that occasional negative thought. That’s reality.

I found a little solace when, after some strategic Googling, I stumbled across an article in the Myeloma Beacon from 2013 about an M spike following transplants actually being a good sign. Research has shown a correlation of longer remission periods/survival rates if the new spike is different than the original. Typically most information I find on the internet is troubling, so it was nice to see that there was a possibility of good news.

Lucky for me, I received positive news during my appointment on the 22nd. The doctor is of the impression that the spike seen in my blood work is actually production of healthy cells. Emory had blood work from the week before this M spike appeared and the doctor said they saw absolutely nothing troubling. It took a few days for them to run labs on the blood work from my most recent visit, but they didn’t find any cause for concern. When blood work was run at my doctor in Columbia the week following my Emory appointment, my M spike came back negative. So all is well for now!

Fast forward to January…the 17th marked a year since my initial diagnosis. My emotions have been all over the place lately, thinking about where I was a year ago compared to where I am now. As John and I rode home from an overnight trip to Charlotte on the 17th, I realized it had been a year to the day since I was first admitted to the hospital, almost down to the hour that I had realized they admitted me to the oncology floor.

All sorts of emotions rushed over me as I thought about how I felt at that moment last year compared to how happy I had been that weekend. I wanted to scream, cry and laugh all at the same time. It’s hard to explain the way one night away in a perfect bed and breakfast feels when you’re with your favorite person in the entire world, you have an amazing dinner out, and you get to hang out with some truly fun people. It’s different than it was before. The weekend was perfection (minus the rude Panthers fan who got all up in my face flipping me off with both hands simply because I was walking to my seat in the stadium – classless asshole).

Tuesday the 19th marked a year since my first bone marrow biopsy, and Thursday the 21st marked a year since my initial diagnosis. I’ve come a long way since then, and I’m changed forever, whether I like it or not. Some of the change has been positive. I’m humbled and grateful to be here every day and to be able to spend time with friends and family. I should have felt this way prior to this ordeal, and maybe I thought I felt that way previously, but in reality I did not.

I’ve changed positively in other ways, too. Before I got sick, I never looked at myself in the mirror and felt like I was that pretty. I didn’t think I was ugly, but I never thought I was anything that special. Cute – okay. But beautiful? No. That’s a personal problem that I should have overcome long ago. So when I lost my hair this past summer, I was forced to look at myself – REALLY look at myself – both physically and emotionally. I finally grasped that beauty is made of so many things. Not to say I didn’t know this, I just hadn’t fully comprehended it in the past. Beauty is physical, no doubt. But it’s also strength, courage, humility and so much more.

I gained some newfound self-esteem the first time I looked in the mirror after all of my hair had fallen out. I wanted to put on some makeup because I knew it would make me feel somewhat normal, and I looked at myself so closely in that moment (I get really close to the mirror to put on eyeliner) and realized that I’m beautiful. I felt a little sad that I wasn’t exactly conscious of this before. My husband tells me that I finally see in myself what he’s always known about me. It doesn’t hurt that I have a very nicely shaped head, so my baldness wasn’t too offensive. The first comments out of both my husband’s and brother’s mouths when they first saw me were regarding my nice, round head.

While I’m talking about how beautiful I am, I will mention that many people have complimented me on my glowing skin lately. Now, I realize that when I was sick my face lacked any sort of color; that’s what happens when your hemoglobin hangs out between 7 and 8 on the reg. Now that I’m back up to almost normal blood levels, I have a nice, rosy glow. I also have the clearest skin I’ve ever had in my life. I attribute this to chemo drying out my normally oily face. I counterbalance the dryness with a little moisturizing after I wash (I use nothing fancier than Neutrogena) and a lot of water intake (I have to drink the water for my kidney function, anyway).

So I’ve found the secret to beautiful skin, and it’s not Rodan + Fields. It’s a combination of chemo, Neutrogena and about 100 ounces of water a day. Turns out the chemo makes the regimen kind of expensive, so go ahead and stick to Rodan + Fields if that’s your thing because it’s probably cheaper. But Proactiv never made my skin look this good.

Getting back to emotional changes, I now appreciate the smallest things I sometimes took for granted in the past; but with the positive change also comes the anxiety of not knowing if or when I will get sick again. I try not to think about it often, but it’s a reality I can’t ignore. I know what happened in December will likely happen again, and there is a chance I will get bad news at some point. I have to be prepared for these things to occur, but I make a concerted effort not to focus on it.  Focusing on it will only harm me in the long run.

I’d rather live my life while I can rather than worry myself to the grave. It’s not like I’m spending my days dancing with leprechauns under rainbows, but the Grim Reaper isn’t hanging out on my shoulder either. I’ll admit that sometimes I need a reminder to get my head out of my ass. You can usually find me listening to “Float On” by Modest Mouse on repeat when I need a reminder that life will go on regardless of the bad shit that might happen along the way…“Bad news comes, don’t you worry even when it lands / Good news will work its way to all them plans.” I will find balance in my life.

The biggest change for me has been the general reprioritization of my life. John and I are no longer putting things off because we’ll have time. The truth is, whether it’s because of cancer or something else, we may not have time to do the things we want. If I feel like I need to change something in my life, I’m going to do what is in my power to change it. If we want to take a trip and make some memories, we are going to do it now, damn it.

This is all within reason, mind you. Ideally we would have won a billion dollars in the lottery, quit our jobs, and traveled the world while homeschooling Olivia and exposing her to many different cultures. Plus, with the way the candidates look for the 2016 election on both sides, it may be a good time to pack up and ship out. But alas, we only won $7.00. So we’ll be doing what we can within our means to make sure we have the best time we can and give our daughter the best life we can while we’re here.

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