Why I’m Afraid to Get Better

January 20th will be my final infusion chemotherapy session. This is how I feel about that.


I’ve never been one to oppose change but I have found myself to be extremely nostalgic the older I get. I never thought this would apply to anything related to cancer. This is one reason, among many, that I am afraid to get better. 

I know that it is time for infusion chemo to be over, for me to move on to the next leg of this experience and begin reacclimating to “normal” life. I have been experiencing so many emotions when I think about not having to attend weekly appointments and having labs drawn all of the time. This odd routine has molded my 26th and 27th year, this cancer has perforated many “normal” memories I have surrounding my wedding events, and it has started my life as a newlywed on somewhat of a unique foot. Most people don’t look back at their bachelorette party and, among the many happy memories, have a memory of curling up in a ball on the bathroom floor and crying because it may be the last time you’re with all of your best friends at once or the last time you might see the ocean (at the time I wasn’t as educated about my survival rate). People tell me I should be excited (and there are many, many moments that I am) but I have found myself experiencing other emotions too: fear, anxiety, and sadness. 

I am afraid that I will build up my life again for it to all be torn down in the future. That I will work so hard to build back up my identity without cancer. My strength, my normalcy, my confidence, and my social life. That all it will take is one headache, one rash, or one lingering cough to send me into a panic attack and a day full of tests. I will then be forced to endure the dreaded waiting and then possibly another phone call that will rock my world…again. I think about getting the news the first time and I feel a very real physical response as my heartbeat picks up and my stomach ties itself in knots. My mind is flooded with a million questions: Can I do this again? Do I want to? How would I tell Nick that I have cancer again? How would I tell my family?   Will I ever not be afraid? 

The anxiety ties into the fear that any lump, bump, bruise, or headache will throw me into a tailspin. There’s also a sense that if you aren’t actively treating and fighting the cancer that you’re just waiting for it to return. I plan on being proactive and trying to get into therapy with someone who has oncology experience in order to learn how to better deal with this. I’ve always said that absolutely everyone should try therapy and I think after my surgery I will need to explore this avenue. There is a well known cancer survivor and spokesperson named Nalie Agustin from Canada that blogged and vlogged throughout her experience with breast cancer. She was 24 when diagnosed in 2012 and documents her journey as well as her recovery. She has since continued to be active in the breast cancer community in Canada and acts as an advocate for young women. I’m used to seeing her honest and positive posts about life after cancer. The other day she posted a YouTube video and announced that her cancer had returned. Of course, it began as an innocent little cough and by the time she had an X-ray she was told there were many nodules in her lungs. She started chemo this past week. I have her permission to share the video here. It’s very raw and it touches on many of the fears cancer survivors face long after being declared NED (no sign of disease). 

                              The Relapse 
One thing in particular that touched me was when she mentioned how her hair had finally grown back and she looked like she did before cancer. It’s that final achievement of getting back to where you are to have the floor ripped out from under you. It’s a fear that may seem silly to others but it’s very real to someone in recovery. 

I’m a little sad (this is where the nostalgia comes in) that I won’t see some of my doctors again (I really love my doctors) or that I’ll miss being greeted by name by the infusion nurses who make me feel so welcome and cared for. This routine of lab work, breast exams, chemo infusions, and everything cancer. I would be lying if the only thing I thought was “good riddance!” It’s definitely one of the things I think but I don’t think it’s realistic to only feel this way.


Recently I have been seeing more and more women in my breast cancer Facebook groups asking other women how they adjusted their lives back to “normal”. All of the posts differed in one way or another but most included something like “everyone just expects me to be grateful to be alive and to pretend this didn’t happen and move on.” This is so true. You’re supposed to go back to work or your social scene and be outwardly happy because you’re “brave” or a “survivor”. While these things may be true they do not minimize the overwhelmingness of being thrown back into a world where you don’t have cancer.  

My case is a little different than some women because after my surgery and recovery I will have 6 more months of oral chemo for “insurance”. I’m hoping this low dose med with little side effects will assist me in my transition to normalcy. 

I hope other women can relate to this post and I hope people who know someone with cancer can extend grace and understanding when their loved one doesn’t seem excited or sometimes seems scared when they’re about to be done with chemo. It’s a very huge milestone but it’s really just the beginning of the race to 5 years for me. After 5 years I’ll have the best chance of survival and after 5 years we’ll be able to really breathe. 

-Maeg

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8 thoughts on “Why I’m Afraid to Get Better

  1. Linda Mitschke Mutscher says:

    You are perfectly normal to have these fears of reoccurrence!! I don’t think it matters HOW long after treatment, in the back of our minds there is ALWAYS that fear of this beast coming back again!! This is true for the support group that I belong to. From those who are still in treatment to those who are 30 years out!!

    Liked by 1 person

  2. Monike says:

    Forgive me, but when I have no words, I just cuss: Anxiety is a motherfucker and fucking fuck that shit. Counseling rules & I think it should be a part of everyone’s week. Seriously. When you’re doing your new normal, guess what? You get to fucking write what normal is for you now. You get to decide. Always wanted to take up hiking? DO IT. Always wanted to learn to speak French? BONJOUR, SNITCH. Been thinking about brewing kombucha? HERE’S THE MOTHER F*CKING MOTHER FUNGUS. Normal is relative. You get to decide what that looks like now. Here’s to hoping you can be encouraged by the endless possibilities.

    Liked by 1 person

  3. Austin says:

    After going through ten years of ups and downs, life and death with Jen I can say that it will fall apart again at some point. But Moniker is on point, we get to say fuck this and write our own script. We decided that we could live in fear of the inevitable, or we could take every second and rip, pull, squeeze, and shove as much joy out of it as possible. We still have days where we fall into the depth, yet we now have more days of hope. The inevitable will happen in our family, and we have come to peace with that. Instead of running from inevitably we invited it in to get drunk. It may be a messed up way to look at it, but it’s worked for us and fuck em if people can’t deal with it!

    Liked by 1 person

  4. rain says:

    Hi Maeg,

    I hope the sky tears up and gives you everything. The sun, the stars, whatever you want. Some galaxies, some comets. I hope it gives you some space debris for nostalgia, caked in space dust. I hope the atmosphere coughs up and gives you happiness and health. I hope you get better.

    My aunt was diagnosed with cancer five years ago. They gave her five years to live. This month is five years and from then. And she is happy and healthy and she talked about getting back to normalcy and everyone around her trying to bring her to it. Helping her too.

    I hope you have a good life ahead. I wish you so much happiness.

    Love,
    rain.

    Liked by 1 person

  5. Jason says:

    I can’t tell you how much your post and writing have meant to us. My wife was recently diagnosed and we got treated at the RR Tx Onc. She was diagnosed in September and ended IV chemo on 1/5. She’ll have adjuvant treatment and oral chemo until Sept. I got the url for this site when we rode up the elevator to the infusion room with you and someone who had the T-shirt with the web address on it! 🙂 I’ve been following your posts ever since.

    I agree 100% about everyone expecting you to get beyond it and just go back to normal. How? How can you possibly explain (and I here I speak from the perspective of a cancer spouse so please forgive me if I presume)… how can you possibly explain how the past few months have broken you down and remade you into someone else? There is no “going back” in that you’ll never fit into the mold of the person you were, the person that everyone else remembers you to be. If you weren’t one of the people closest (a spouse or family member) then it’s almost like you’ve grown and changed radically and everyone else…. just hasn’t. It’s a little frustrating, a little sad, and a constant reminder that life is different now. My wife just started back to work a few weeks ago and after the first day or two of hugs and happy greetings, everything is exactly the same. I guess that’s cause to rejoice but it’s also disorienting and isolating.

    Liked by 1 person

    • Maegan says:

      Jason, thank you so much for the kind words! I’m so glad your wife finished up IV chemo and has been able to return to work (even though, like you said, it’s extremely disorienting and isolating at times). It sounds like she has more months of treatment and I hope that she is able to complete it without any issues. I’ll be thinking about y’all.

      Your insight is spot on and tells me how in tune you are with your wife’s experiences right now. It’s so helpful having someone at home who can acknowledge what you’re going through. I think cancer spouses are the closest person to “getting it” that a patient has. Everyone else can require explanations as to why you feel the way you do and that can get exhausting. Like you said, how can you explain that you were broken down and have been rebuilt as someone else? Cancer isn’t just an illness, it’s an absolute life altering experience. I’ll never be the same and I’m sure the same is true about your wife. I keep being told that since I’ve gone through most of my treatment that I’m “brave” , “strong”, or able to withhold more than before, but it often doesn’t feel that way. Maybe someday it will. I wish that for your wife too. I hope that this new normal of ours begins to feel more comfortable and that we can be appreciated for the people we have become.

      Like

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