I am currently 6 weeks post chemo, and have never been more confused in my entire life. But why? I just finished chemo shouldn’t that mean everything is great and back to normal now? I mean I don’t even think that would be a possibility no matter how hard I tried. To be completely honest I don’t even know what ‘normal’ is anymore, and I definitely don’t want to go back to who I was before. Not that I was a terrible person because I’d like to think I wasn’t, but I also had a huge misconception of what was important in life and that was another HUGE lesson. I must say being that it’s 2019 I am honestly extremely surprised at the lack of information for cancer patients. The first thing I did when I was diagnosed was google every possible thing I could because who even knows what Hodgkin’s Lymphoma is? I didn’t. My husband didn’t. My family didn’t. Why don’t they teach these kinds of things in school?
I’ll never forget my senior year of high school and in my health class we had to find speakers who would somehow make an impact in the class. Two of my friends chose my mom as their speaker because she’s a Badass Breast Cancer Survivor and the way the class reacted was amazing. There should be more of that in schools. You would think there would be tons of reading materials on cancer in general, but it’s actually pretty hard to find the information you actually want. Like “why are my eyebrows and eyelashes falling out a month after chemo?” “Why does everything make me cry?” “Why do I still have severe bone pain?” “What is normal?” “Who the hell decided you have to wait a week for scan results?” “How do I act in public?” “How do I deal with scanxiety?” “How do I go back to hanging out with my friends?” “Am I allowed to get mad about stupid things?” These are just a few of the questions I ask every single day lately. I honestly haven’t been this emotionally exhausted and drained since I lost my hair. I wish I could say that I’m done with chemo and every thing is peachy keen but that would be a lie. The truth is i’m struggling. On Wednesday I will hopefully hear the words “In Remission” or “Cancer Free” (I’ll settle for either) and it can’t come soon enough. I mean I have been waiting since July 13th 2018 to hear those words.
The other day I was having another anxiety moment (there were a lot) about my scan and was talking to my husband about it. I told him I felt like I was about to take a test that I had no control over. A test that no matter what I do it doesn’t matter. My husband looks at me and smiles he says “What do you mean you didn’t prepare for it?” “You’ve been fighting your ass off for the last 6 months. THAT’S your preparation” and that’s when I decided he was completely right (for once.. JK) I decided to stop feeling sorry for myself and accepted what is currently out of my control. Easier said than done.
Life post chemo is a tricky concept because during treatment the mission is “don’t puke, and eat some food” post chemo your mission is…..live?…but restricted?….but am I cancer free?….I AM LOST AND CONFUSED. They don’t tell you that after your last treatment they will continue to torture you. First once your done with treatment you get to wait 3 weeks then you get “checked” then you wait a week get a PET SCAN then you wait some more and you get your results a week later. That’s where I’m at the worst part of waiting to date. Honestly and I mean it waiting for these results is worse than when I waited to find out I had cancer. I KNEW I had cancer. I do not have any idea what is going on in my body right now, and the thought of hearing anything besides those two words is just unfathomable. Plus I keep forgetting about my bestie Mr. Port that also needs to be removed and never put in again.
One thing I know for sure is being “strong” isn’t as much of a choice as you’d like to think. The choice is more like “live or die” Once you make the choice to live that’s when your mindset changes.
As strong and positive as I am I still have a lot of extremely rough days and I think it’s honestly because I’m still trying to figure out who I am after all of this. At the same time it’s not “after” because it’s still very much apart of my every day life. I am trying to ‘trust the process’ but man is it deterring when you’re 6 weeks post chemo and you look in the mirror to find half of your eyebrow missing. It’s a real punch to the gut. Then you laugh because you’re crying over a damn eyebrow. But really it has absolutely nothing to do with the missing eyebrow or the fact that your hair is just at a standstill. It has EVERYTHING to do with not knowing if you’re cancer free or not. It has everything to do with having a second chance and being so paranoid about screwing it up. About having “guilt” about the loved ones in your life who didn’t make it from the disease and now you feel it’s your duty to fully live your life in every way because they couldn’t. It’s the unrealistic expectations you put on yourself as a survivor to be happy all the time. Then you smack yourself until you realize that YOU KICKED CANCER’S ASS. CELEBRATE IT.
Then you go through the feelings of “we’re not doing enough” “I need to find ways to help” “how can I make a difference” and then your husband, or your nurse practitioner kindly reminds you that you should probably start working on yourself again before you start helping other people. This is the part where you agree, roll your eyes, and google later. I will say this though social media can play a crucial part in your days, good or bad its up to you, but honestly if you’re having an off day mentally stay off of it. You think it’ll be fine, and then you see something extremely upsetting on a cancer page you follow or someone is complaining about something irrelevant on facebook. Then you’re down the #hashtag rabbit hole on instagram and you’re even more sad than you were 20 minutes ago. Just Don’t. On the other hand #hodgkinslymphoma was the very first thing I looked for and I found comfort in 2 or 3 accounts. 1 was an author and lymphoma survivor, 1 was stage 4 but had a very similar story and situation, and the last one was a page that appreciated cancer warriors. These pages helped me in many ways because there’s no worse feeling than feeling alone and they took that burden off making me feel like they all knew EXACTLY what I was going through and there is no better feeling than that. Also I would recommend reading as many self care/self help/ books as you possibly can during this experience or in general honestly. Although they may not be “cancer” specific I know that reading is one of the things that has truly made a difference in my outlook on having cancer and dealing with what life throws at you. (I’m a control freak so they help)
I do wish I could give any advice on how to deal with waiting for your scan results, but I am unfortunately in need of it myself. All I can say is I fought the fight. The fight of my life and in my heart and in the deepest of my core I know I will be cancer free, and be on my way to a healthier and happier life. So until then Badasses!