September 20th, 2016
It's been a while since I last wrote. I've been trying to re-discover normalcy. If I'm being honest, this isn't quite what I thought life without cancer would be like. In my head when I thought of living without cancer, I would be back to the old me-- my life, my habits, my likes. Everything would just go back to "normal." That's not even close to being the case, for so many reasons.
Here are the 4 worst parts about life after cancer:
1. Cancer changes you.
I am not the same person I was before I got diagnosed. The things I liked and thought were important before cancer aren't now. The people I wanted to spend my time with and the things I wanted to do have drastically changed. I feel like cancer made me grow up a lot faster. I'm not as ignorant. I'm smarter, stronger, and know better. In some ways, I'm so appreciative of that. But in other ways, it's really difficult. It seems much harder to connect with people my own age. I feel so much older than them. It feels like cancer shoved me forward emotionally and psychologically a few decades, but left me in my body.
2. Life after cancer is also really lonely and kind of dark if I'm being completely raw.
When I was going through treatment I got un-wantedly shoved into the spotlight of receiving 24-hour a day support. People were cheering me on, leaving me nice messages, checking on me. Although being the center of attention is never something I wanted, it was what I needed. It didn't give me enough time to be alone, which kept me out of my head and made it easier to fight. Being constantly told "you're brave" or "you’re so strong" keeps you positive, even when maybe you're not feeling so strong. It was like being in a super crowded room and I was the special guest.
Once I found out the maintenance was working to keep me in stable disease, it's like I snuck out a side exit, closed the door behind me, and no one followed. At first it was almost like a breath of fresh air. Alone time. Time to process, time to think, time to pray. What's gotten unexpectedly hard is learning to be strong on my own two feet not relying on others to hold me up. Just because the extensive expensive treatments stopped doesn't mean all the pain and struggle did too.
3. PTSD after cancer is real.
Living in constant fear of "when will it come back?" without all the distraction to keep you out of your head. Knowing you're not who you were before, but still not sure who you are now. How far out can you plan? What do you like now? What do you invest in? Where do you want to spend your time? Are you doing this right? Do you miss the old you? Do you even like the new you? Are you doing too much too soon? Moving too fast, too slow? Is this normal? The thoughts are exhausting.
4. The side effects SUCK.
Waking up with neuropathy pain and dizzying headaches most days. Feeling like you've run a marathon by 12pm and trying to figure out how to get through the horrifying fatigue just praying it’s night time already so it's appropriate to sleep again. Lung scans, bone scans, constant monitoring, liver and kidney filtering, diagnostic testing. Being on 18 medications to manage the fallout cancer left and taking oral chemo still knocks you on your butt way more than you feel is ok. The difference is, now I'm doing this without a pep rally behind me. Having to find my own kind of strength to get through the day. It's been really challenging. For me, I find it's emotionally more draining and difficult now than when I was in treatment.
Don't get me wrong though, it's not all bad. It's all about balance. Here are the 4 best parts about life after cancer:
1. Having more free time.
Not being on a full time treatment regimen has freed up a lot of time for me. I’m no longer dealing with appointments, scans, and treatment nearly everyday. It’s all still a lot, but a lot less than before. I’ve spent a lot of time catching up with friends and doing things I just couldn’t do before. I’m enjoying food again, working out. I’ve started cycling and love it.
2. Re-discovering your strength.
This summer has been wonderful. I was finally strong enough for the first time in 4 years to travel out of the country for a family vacation without paranoia that something would go wrong with my health and that I wouldn’t have access to medical care.
I haven't been able to teach (or work full time) in 4 years, and I'm happy to announce that this Monday I'm returning full time as a middle school teacher! This is so exciting, but also a little scary. I really went back and forth on this a lot. All the doors opened so fast, is it too fast?
One of my biggest fears right now is committing to something and then having to stop because I wasn't ready, or couldn't do it. I also worry what happens if the cancer returns during the school year? What if I'm not strong enough. Finally I told my brain to shhhh and gave it all to God. I can't control my situation, and I won’t know if I can do something if I don't try. So I accepted. I've been like a giddy little kid with my pinterest boards and textbooks all summer planning. I guess the term "stand on faith" is really getting tested now. I am also returning to grad school this fall!
3. Embracing your independence.
I’ve spent so much time with my kids and husband where I’m fully involved and not just partially involved like before. Before I was too sick to function and contribute. Now I did a road trip with the kids alone. It's been nice to be able to rely a little more on myself and not need others for everything.
4. Enjoying the little things.
Getting better day by day! No longer look like the poor sick girl! Have my color back, skin's better, steroid weight and swelling going down. Just me, music, and nature is my special place right now. I’m experiencing new things. I've read 4 books this summer, which is AMAZING. Spent so much time with my kids and husband where I was fully involved and not just partially involved because I was too sick to function and contribute. Did a road trip with the kids alone. It's been nice to be able to rely a little more on myself and not need others for everything.
I know it's not the end of the road for this stupid cancer journey. I know my being in stable disease is not a cure. I'm not ignoring the facts, and I know eventually I have to have an allogeneic transplant, but for now, the maintenance is working, so I'm doing my best to just accept this period of rest and attempt to find myself again and create a new sense of normalcy before we cross those roads.
Day by day. All praises due.
What are some of the best and worst parts about your life after cancer? Leave a comment below or sign up here.
Main photo courtesy of Chris Montgomery.
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