There are some things that are so hard for people to understand—especially when it comes to survivorship.
Letting go of the past—who and what you were—is quite possibly one of the most difficult obstacles to overcome post-transplant.
I’m definitely not there yet—at least I don’t feel like I’ve fully accepted I won’t be back to where I was before leukemia.
It’s been two years since I had my allogenic stem cell transplant (meaning I received stem cells from a donor) and I’m not even close to being “normal” due to ongoing physical side effects—like fatigue and GVHD. But I’m also not there emotionally either.
Guys, I want you to remember how it’s so easy to take your health for granted. Every old photo, video, or memory that comes to mind makes me want to shake my head at the girl who was so vibrant, exciting, full of life—and naive. I thought nothing like this would ever happen to me, but then it does and the life you once knew is gone and your life will never be the same.
When I was younger, I never took care of my body, especially, in high school, because I didn’t have to. I was naturally thin (size 0 or 2), could eat what I wanted and was active in sports. Though once I got on birth control and quit playing sports junior year, I gained weight.
I wasn’t fat, though I got called fat, I was maybe a 6 or 7, and I hated the way I looked. I did get some pretty big knockers at the time so that was a plus (at least for Klay).
I hated the way I looked when I was a size 2 or at any size really. I’ve always been pretty unhappy with my looks. I never thought I was naturally pretty. I have a big nose, pale skin, and thick thighs.
And, right now I have 72 chins—stupid turkey neck—from swelling and being on steroids (prednisone). I hate looking in the mirror; it seriously makes me cry. Thankfully, I haven’t had to stare at that person in the mirror that much because I’ve been at home trying to rest and get back some strength.
And yet, back then, I never took the time to work out or eat right. I’m a born and raised Texan; we think butter is an essential part of the food group—that and gravy. #restingrease
Honestly, I never knew how unhealthy I was until I moved to Alaska. People up there were blown away by me drinking cokes (or soda or pop for you northerners) and eating pop tarts, Taco Bell, or any fast food for that matter. I didn’t really begin to care about my body until I started working out daily with Klay at the gym on base. When I started seeing results and changing my diet, I realized how great I started to feel. And I miss that feeling.
But not even a year later, we were back home in Texas and I was knocked up with Brody, so my body was going to change again—and I was going to have to work hard to get it back.
So, in a lot of ways, I feel as though I contributed to my cancer by being so unhealthy. But I never smoked, barely drank, and never did drugs—not even pot, ya’ll. I would seriously smoke some weed today though. I think I’ve earned it, plus it may help me with pain.
I stayed away from all of the bad shit that’s really harmful to your body (drug wise). Yet still, it is me who gets cancer. No one knows how or why I got leukemia. Could just be unlucky genes or just unlucky in life. I think it may be a combination of both.
Looking back at the old “Cass,” I can’t help but feel an ache in my chest. Photos of Klay and I eat 15 and 16 or living in Alaska make me sad for them; those two high school sweethearts had no way of knowing the life they were going to be dealt in the years to come.
They were clueless. We were clueless.
By now I’ve learned if some crazy shit is going to happen to someone, it will be me. I don’t know why but it does. From root canals gone bad and locking my 4-month-old child in Klay’s truck at Walmart to totaling my car on the way to an oncology appointment and finding out I have cancer while 29 weeks pregnant, to breaking my tailbone the day of my sinus surgery, I’d say I pretty much get dealt a shitty hand on the reg. And those events were only in the past five years. Could you imagine what the other 24 years of my life were like?
You’d think after hearing some of those stories, I’d be all for a “new” me. But it’s not just losing my health that upsets me, it’s also the emotional/mental/personality changes that hurt,
I don’t know what the future holds if it will get better if it will get worse, or how much mobility I will have. I do know I won’t be the same—ever. Cancer does that to you.
I probably won’t be able to be physical with the boys by taking them on runs, or chasing them, or throwing the ball with them. I always wanted to be the “active mom” that was out there playing with my kids and helping them learn and grow. I don’t think I’ll be able to do those types of things again. I mean, hell, I can’t even put up my own hair, can barely carry a milk jug with both hands, and look like a 90-year-old trying to get up from a sitting position. #realife
I’m not trying to be negative; I’m trying to be realistic. And right now, I can’t see myself jogging outside, going to the gym, or doing more active things outside with my kids. I don’t know if I’ll ever be able to run again. And I’d give anything to be able to go for a jog, and I effin’ hate running.
But I’m trying to change the way I think. I don’t want to look at the future five to ten years from now—it scares the living shit out of me. I’m afraid of the disappointment it may hold.
So my new goal is to adapt to the way my life is now. I’m looking for activities I can do with the boys that don’t involve so much physical activity.
And, I’m setting small goals, like washing and loading the dishwasher, or putting up the dishes, or organizing certain areas of the house—which I’ve accomplished none because right now showering and getting dressed consumes all of the energy I have for the day.
So, I’m finding small things I can tackle that may be ordinary for some people, but exceptionally difficult for me.
The problem is I’m still holding on to who I was before cancer and comparing it to life now, so I’m not able to look at those small accomplishments as progress (like going to Kindergarten Roundup or showering and putting makeup on). It’s hard for me to see how far I’ve come because I’m so miserable right now. So, I feel like it’s not enough; I should be able to more—a lot more.
And, if not for me, for Klay. He has so much on his shoulders right now.
I get out of breath so easily, it’s hard to do basic daily chores—which makes me depressed because Klay does EVERYTHING. He does the dishes, the laundry, he even made me shower with him so he could wash my hair because I can’t keep my arms up for too long. He bathes the kids, he plays with the kids outside, he takes them to Brody’s practices and tae kwon do classes. He drives me to my doctor appointments. He puts the kids to bed every night. He does everything and he never gets a break. I know he has to be frustrated. I would be. But he doesn’t complain; he takes care of his family. That’s the one thing I did get lucky in—was earning his heart and his love.
On the flip side, he kinda got screwed if you ask me. He had this once beautiful, fun, light-up-the-room-kind- of girl, and now he has a sick, unattractive, useless wife. He’s mommy and daddy right now—and he has been for two years.
But I can’t take care of him and that hurts.
I feel guilty all the time. He deserves so much better than the life I’ve given him. If I could save him from this life, I would. He deserves the world and I’m holding him back.
I stare at old pictures of us and wonder if he would change it all if he knew it would be like this? Would he choose me to be his partner in life again? Knowing him, he would.
Letting go of the old Cass is hard for me because if you know me, you know that I’m a person of stories. I have many to tell, many to share, many to laugh at. In a lot of ways, I’ve always looked over my shoulder into the past. My entire life has been about “when I did this or the time I did that,” I’ve never really had to look at life day-to-day. And if I wasn’t looking behind me, I was worried about my future—if I’d accomplish my dreams or be disappointed to never reach them.
I’ll be honest; I’ve had trouble getting over things that happened in the past with friends, family, and even frenemies. I’ve held on to the pain from the many times I experienced hurt, loss, and heartbreak. I held grudges and can’t move on sometimes, so yes some stuff from the past still bothers me. And as much as I wish I could let all that shit go, I’m still trying.
There are things that stick with us forever. It’s like having gum on your shoe or when you step in dogs shit and you try to rub it off in the grass by not touching it, but there is no way to get all off without getting dirty because it’s settled deep into the teeny, tiny cracks on the sole of your shoe.
When someone you care about hurts you, that pain gets buried deep in our hearts hooking its roots in our very core.
My past has always been a friend and a foe. It’s allowed me to share stories, stay connected with people, reminisce and it’s also made life more difficult by not letting me move forward.
I know I need to just let it go, but I’m not effin’ Elsa in Frozen. I can’t just sing the song and build my own ice castle and shut the world out. I wish it was that easy, plus having some awesome tricks like that would be pretty epic, but it’s not.
For me to get better, it’s time I embrace this new “normal” I’m currently living—even though it sucks balls right now.
I need to stop letting my brain twist and turn things negatively. I can’t worry about what’s going to happen or stress over the burden that I am to my loved ones, My future is and will always be a mystery to me. I’ll never know what it holds, if the cancer is going to come back, or if I’ll ever be close to being pre-cancer Cass again.
I tell my brain to “shut the hell up. I’m trying to live over here…”
I have to stop thinking about who I was or I thought I was before AML (acute myeloid leukemia).
I need to figure out who I am now.
And it starts with letting the rest of me go—mourning my old self—and getting the hell over it. There is nothing I can do or say or think of to change what happened to me. There is no going back in time in a Delorean with Doc; it’s not the way life works.
Maybe I’ll be the caterpillar becoming the butterfly or maybe I’m Nemo—the only fish left after a horrific accident who now has a little fin—a handicap—and I have to learn how to manage it the best I can. OK, so I’m not exactly good with analogies, but you get where I’m going with this, right?
Maybe life is just that—life. Some people have fortune, fame, careers to die for and other endure a lot of pain, loss, abuse or terrible situations that forever change their lives.
My focus should be on the right here, right now. No more comparing this life to the way things should or could be. It’s time to adapt to what is. I need to do better; instead of complaining about how I wish things were different, I need to focus and celebrate the things that are great in this moment.
I’ll always wish things were different. This part of my life really sucks. My body is not what it used to be.
But I’m here.
I have air in my lungs, two handsome boys, a loving husband with friends and family supporting me.
Maybe I should have a bonfire and throw in some old clothes, photos, and mementos that remind me of who I was then. OK, maybe that’s too dramatic.. but I feel like I need to do something that will hold my feet to the fire and makes me keep my promises to myself to live for today, not for tomorrow.
But I want people to understand that I am mourning a loss—that girl before cancer. I hope part of her is still inside of me somewhere and not gone completely.
With that said, I’m gonna have to reverse the Titanic mantra “I’ll never let go,” and say “bye, Felicia” to the old me. It’s time to embrace this new, more challenging life, even if it blows.
Keeping things 100,