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).
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.