Code Pink Episode 7: Scanxiety & Follow-Ups: Living With The Unknown

*In this series, I will share a very raw personal journey. As you read this blog series, none of the information provided should be considered expert medical advice. What I went through may or may not be the same for the next person. I tried to share common reactions to treatment and how to manage. I am also not paid to advertise certain products. Please follow the direction of your medical doctor. The information in this series should be read with a smile. Please also be aware, I am very honest. I tell it how it is. I don’t sugar coat but I can be sarcastic. For that, I apologize for the occasional profanity. The tips and suggestions are things I’ve learned along the way, helped me, and information I want to share with you.

So...you just survived cancer…now what? Over the course of my diagnosis and treatment year I had over 140 appointments, almost one every three days. You get used to seeing your doctors and nurses. You feel safer because you’re constantly being monitored and checked. In a strange way, I felt sad leaving on my last day of radiation because I’d seen my nurses and doctor every day. Afterwards there was a small void. These people have come into your life, hopefully for a short time, and you get to know them and they get to know you. You take an interest in one another. It’s kinda of like a sick dysfunctional family. But then treatment stops and you wonder…what do I do now?

            I remember laying on the table during my last radiation treatment and I started crying. I couldn’t believe that it was over. All of it. Nine months of tests, procedures, and treatments. It was all done. Like always, my husband was by my side and he comforted me. He understood my tears, knew they were happy in nature but also knew me very emotional response.

            Again, I asked myself, what do I do now?  You LIVE. That’s what you do.

            Yes, you will have a lifelong relationship with oncology but gone are the weekly appointments. Now you will be on the 3 or 6 or 12-month schedule. Cancer is scary and the fear of reoccurrence is real. Follow-up appointments can create a tremendous amount of anxiety but you have to trust that all these months of treatment were worth it and the path you took, killed that darn cancer.  

            Easier said than done, I know. I struggled for a couple weeks not knowing what to do or how to feel. I wished the doctors and nurses would have stayed in touch a little more in the transition period instead of cutting me lose and wishing me luck. “Don’t let the door hit you’re A** on the way out”. I felt lost at times. I was so used to having someone there to reassure me, I began questioning every little thing. It’s like my rational and more specifically my nurse brain stopped working.  It got easier as days passed. I remember being at work, back with friends, back in a routine and I caught my reflection in the ambulance bay and I saw my short hair. I couldn’t escape the fact that this all happened. I felt like, for a while anyway, that I was constantly taking care of fellow oncology patients. The reminder was everywhere.

            For a while there will be a transition period where you have short hair and people still stop and stare wondering why you decided to have a meltdown and shave your head. You could say you went to a beauty school on the first week of class and the haircut was so bad this was the only option. You could say your kid put gum in your hair and you had to cut it short. You could also tell the truth but be ready for a slew of questioning, even from strangers. When the time is right, take off the scarfs and wraps and let the wind whip through your baby hairs. Go grocery shopping again and touch the cart handle, sanitize later of course! Venture outside and get a little sun on your cheeks. Take yourself on vacation, you deserve it. As life went on and I got back into my routine, moments of anxiety creeped back into my life. I was nervous to get sick so I continued to have hand sanitizer everywhere I went. I washed my hands raw at work, to the point they began peeling. The fact is, your immune system takes a big hit with chemo and treatment so my concerns were valid, however, it shouldn’t have taken over my life. Easy to say now, but in the moment it’s terrifying.

            A month after I finished radiation I got sick. I was scared shitless. Luckily my Mom came to my rescue and kept me entertained as I sat in radiology for about the 20^th time this year. I started feeling a burning in my chest and was short of breath. I knew I was high risk for blood clots being on the Tamoxifen so my oncologist wanted me to have a CT scan right away. I went in for labs, which were normal, and a CT scan. The good news was that I did not have a blood clot but the CT scan did show all the damage from treatment. My heart was enlarged from my heart having to work harder post chemo than normal and there was evidence of damage to my lungs. I also had pneumonia. I was told it wasn’t common to get pneumonia post radiation (if I did it would have been around the 6month post treatment mark) but when had I ever followed the “statistics”? In retrospect, I should have bought a lottery ticket every time someone told me the statistics of my cancer.

            When they ask about fear it’s not the bees, spiders, or snakes kind. Fear is there and it is real. Reality check. It took a few talk therapy sessions to understand that while the concerns are valid they cannot consume you. I found that if I kept myself busy I didn’t think about cancer as much. It was when I was alone or with my kids that I thought about it. I often thought about how much it could have taken away from me and how much I vowed to never let that happen. I often wondered if cancer was still brewing in my body and growing although I wouldn’t know for years.

            Looking back at my fears over time, rationally I knew, a sniffle didn’t mean the flu. It was probably just a cold. Pain in the chest may just be pain, indigestion, or a pulled muscle. It wasn’t a heart attack or lung cancer. A headache didn’t mean the cancer is back and has mets to my brain. The thoughts crossed my mind but it wasn’t true. Fear will always be there but you have to trust in the process and your doctors. You’ve put yourself through H**L, it’s normal to feel that way.

            I met some pretty amazing cancer warriors during my journey and it was remarkable to see how many of them were success stories and living beyond cancer. It’s always positive to hear survivor stories.  I also met some truly wonderful people who lost their battle and passed away from cancer. People, I think about often and miss. I trade places with them in my mind sometimes and throw myself a pity party but my amazing family brings me back to reality. It’s hard not to think about all the what ifs but I have to continually remind myself …will it change anything? Will it change treatment? Will it change the plan? Will it change my life? Those are usually answered with a big fat NO and reality comes back into view.

           Go on living your life. Don’t let cancer take away one more day. Have a pity party but set a time limit. It’s not uncommon to have a flood of emotions as you begin to mentally process everything but don’t let it diminish all of the hard work you accomplished on your journey. Celebrate life’s little moments and find the joy in every day. One of the best quotes I found said, “Dear Cancer, Thank you for making me stop and listen and remember what’s truly important. You can go now”.

 After treatment people would say to me, “Wow, you look great, aren’t you so happy that you have that whole cancer thing behind you”? I remember thinking to myself, you really have no clue about this “whole cancer thing”. But, I would smile and say yes to be polite. Honestly, it never truly goes away. Cancer is always there. Maybe not physically but in your mind. There’s not a day that goes by that I don’t think about it. Follow up appointments will continue and you will have a lifelong relationship with your oncologist. It’s not like strep where you take a pill and you’re cured in 10 days. I wish! But really…cancer was a part of our life but it’s not what defines us. We have the ability to write the next chapter.

          *Tips For Surviving: Get your LIFE back. Go back to work, play with your kids, go on dates with your significant other, take time for yourself. Your body has been through H**L and back, give yourself a break and be kind to yourself. Find the meaning of life. I know it’s hard but try not to let your thoughts consume you. Cancer is everywhere. Just when you think you’ve gotten away, you hear of someone else being diagnosed. Stay positive, stay the course. Live your own life.