Surviving Cancer

Remission is such a powerful word. It holds the power to define a life, moving forward. If you are in remission, well in cancer terms, there is no better place to be. In cancer terms, what you want more than anything, is to be THAT word. I am beyond grateful to be in remission. I am thankful and grateful, each and every day, to be cancer free. I’m not here to tell you what remission is, because I know that everyone already knows. What I am here to tell you is what remission ISN’T.

Remission isn’t everything goes back to normal and how it used to be. Remission isn’t all sunshine and rainbows. Remission isn’t resuming life as it once was. My life will never be what it once was. I will never be what I once was. I have lab work coming up on Wednesday the 31st. I didn’t realize how anxious and stressed I was about this upcoming appointment. Once I realized that it has been since November 10th that I had labs done, my body unconsciously started to respond. I am fearful of the idea of what the labs could show. I am used to having doctor appointments and lab work done at least once a month. But since I am in remission and have been for a while now, those appointments are starting to get fewer and farther between. Which is great, yes, but it also brings on so much fear, anxiety, worry, and uncertainty.

For the past several months, I have been dealing with some bizarre symptoms that come and go without warning. It hasn’t officially been diagnosed but my team of doctors thinks I am suffering from the effects of Graft Vs. Host Disease or GVHD. Due to the fact that I had an allogenic stem cell transplant, meaning my donor was not related to me, I have the risk of getting GVHD at some point throughout my life. GVHD looks different for everyone and can basically be made up of unexplained symptoms and issues arising in your body.

I am convinced I have Chronic GVHD, which means it can show up at anytime after your transplant. Years later, even. I feel like I have basically every symptom associated with Chronic GVHD. I am attaching a link that will take you to the Leukemia & Lymphoma Society website where it explains Acute and Chronic GVHD, if you would like to read up on it further. Link.

So, yes, I am in remission. But that by no means means that I am back normal. My body does not function like it once did. My stamina and energy level will never be what it once was. After a long time of comparing myself to my sisters or friends, or others on social media, I realized that by doing so, I set myself up for disappointment and failure. 

After what felt like forever since having a job, I was finally ready to rejoin the workforce. I was so excited and had such high hopes for what my career would be. I dove head first into a 40 hour work week job. Within a few months, I was burnt out. I could barely function due to my anxiety and being stretched so thin. After that, I opted for a more “part-time” position. I ended up at an amazing job working 4 days and 32 hours a week. At first, it was great. I was feeling energized and renewed. But, after a few months, my health started taking a turn, and I found myself missing whole weeks of work. My employer, being the amazing people that they are, agreed that it was perfectly fine if I needed to reduce my hours each week. It was decided that I would start working only 16 hours a week. So I was halving my hours, and my pay, once again.

It wasn’t until just recently that I realized that I will probably never be able to work a 40 hour work week. I simply cannot physically, or mentally handle that amount of commitment. I feel so hopeless if I think about that fact for too long, but sometimes I have clarity and realize that what body withstood, and conquered over the course of the last few years is nothing short of miraculous. How could I ever expect my body to return to what it was before cancer? I can’t. I simply can’t. I have come to terms with the fact that I will never be like my children’s friend’s parents, or my sisters or friends. I have restrictions. I have roadblocks. I have parameters that I can’t say no to. I very often forget to be kind to myself.

In short, yes I am in remission. But I live in daily discomfort; some days more than others. I live with daily limits that most people don’t have until much later in life, if ever. Remission is amazing, but remission is also filled with hardships, road bumps, and unseen challenges. Unless, someone in my shoes, opens up about their “behind the scenes” experience, not many will realize that cancer is lifelong and just because I am in remission and I look great, I sound great, and I say I’m great, doesn’t always mean that remission is great, every day.