It’s National Cancer Prevention Month if you didn’t know. So, I decided to share my current health situation in hopes that people realize how important it is to get regular physicals, regular blood work, and self-examination.
Obviously, cancer is a massive calamity that impacts everyone around you. It’s one of the worst things that could happen to you or someone you love and even if they beat it–they will most likely struggle with their health for the rest of their lives.
I’m 29 years old.
I was diagnosed with acute myeloid leukemia when I was just 27 and 29 weeks pregnant with Beckham.
The past two years have been nothing short of the ultimate fight of my life.
Though I received my stem cell transplant April 2015 and I’ve been in remission since the effects of the chemo and the transplant is taking a heavy toll on my body.
I’m in menopause.
I can’t have any more children.
I can’t pick Bex up out of his crib.
I struggle to get up from the ground.
I can’t unhook my bra.
It hurts to fasten my seatbelt.
I can’t hand my kids anything—who are in the backseat—while driving or on the passenger side.
My arms don’t fully extend.
I get leg cramps.
I get cankles.
It’s not fun.
And, I’ll probably be managing this forever.
I have chronic GVHD of the muscles, fascia, and joints.
“Chronic graft-versus-host disease (GVHD), an immune response of the donor-derived T cells against recipient tissues, occurs in approximately 30-70% of patients receiving an allogeneic transplant. This is a serious, potentially life-threatening post-transplant complication. Early detection of chronic GVHD can help prevent irreversible organ damage and increase the quality-of-life of transplant recipients.” Source: Be The Match.com
There are many different types of GVHD a person can have. For me right now, though, my muscles retain more water which causes edema. I also have:
- Muscle cramps
- Muscle pain
- Muscle weakness
- Joint stiffness
- Restricted range of motion
- Tightened muscles, tendons, and fascia
I’ve really had a hard time lately. My body has been so tight and in so much pain, it hurts to sleep, to sit, to do anything really. I can’t even clap my hands without my palms hurting.
So I’ve had to up my dose of prednisone (steroids) to 60mg and slowly taper off of it over time. Steroids are supposed to make you have more energy and gain weight, but I’ve been super exhausted and unable to get motivated to do much of anything.
I’ve really just wanted to sleep or take naps in the afternoon because I’m so tired. I feel like I never have a moment that I’m ready to tackle the day. And that’s so hard, especially while being a stay at home mom to a 2 and 4-year-old.
I think for a lot of people when you’ve reached remission, they think “yay! you beat cancer.”
In a way I did and in a way, I didn’t.
Everyone seems to think that the fight is the actual chemo and to get in remission—and it is—but there is also the effects of survivorship. Some people don’t ever reach remission or if they do experience relapse and I’ve been fortunate enough that I’m a statistic that puts me in the win column when it comes to not letting cancer—or in my case—leukemia kill me.
But all of the harmful chemicals they put in my body, and the stem cell transplant, has caused some major issues with my health moving forward.
It’s hard to be 29 and think that I’ve already been through so much and there’s a giant possibility that something else can happen because of all of the things my body went through.
I want to be an active parent and create an environment for my kids that is healthy, adventurous, and fun. But I feel like I’m constantly being held back by something—or some side effect.
And right now, the GVHD of the muscles is pretty rough.
So after a few weeks on prednisone if this doesn’t get better I may have to do photopheresis, which is the process in which blood is taken from me and processed through a cell separation machine. This machine removes and treats the lymphocytes and then returns them and the rest of your blood through back to my body.
Hopefully, it won’t come to that, but it might. And if it does, then I’ll have to prepare myself for it.
The one good thing about having GVHD…it means that’s why the cancer hasn’t returned. My donor’s immune system is fighting and doing its job to keep the cancer at bay.
I want you to think about your health today and how important it is to you. Really really think about. Think about what it would be like to experience these things.
Appreciate your health and wellness while you have it. Do NOT take it for granted.
If you can go for a run, run. Get off your ass and do it. If you can do some yoga, do it. If you can get outside and throw the ball to your kids, get out there.
Your body is your vessel while you’re on this earth. Use it wisely. Use it cautiously. But most importantly, use it.
You never know when it could change.
Please help me reach my goal and donate to this great organization–Stupid Cancer–that helps young adults fight, cope, and support young adults with cancer. Any amount would be appreciated! It’s also Random Acts of Kindness Week, so do something today and donate!
Stretching my brain with these thoughts and wishing it was my body,