The New Normal is Not For Me

I hate the term “New Normal.”  I hate it with all of my being.  The “new normal” is something that many people talk about.  It refers to what your life is like after cancer. Oncologists, psychologists, radiologists, (basically all the “–ists”), as well as fellow cancer survivors, refer to the “new normal” on a regular basis.  Every time I hear the term, it makes my skin crawl.

The “new normal,” is an oxymoron to me.  It’s like boneless ribs, a calculated risk,  or alternative facts.  By definition a “new” normal isn’t normal.  It is, however, a new reality.

Speaking as a cervical adenocarcinoma Stage 2 survivor, here are some of the things that people (both doctors and fellow Cervivors) have deemed as a “new normal” after cervical cancer treatment.

Loss of muscle and strength

Due to chemo, radiation and multiple abdominal surgeries I have little to no core strength any more.  I can’t carry the same things that I was able to do prior to cancer (including heavy grocery bags) or do the same cardio that I was able to (I still become winded if I talk and walk upstairs at the same time).  Most recently I developed severe lower back pain, which is due to my psoas muscle having been cut 5 times in the past 18 months.  I have been told that this is “just a side effect” of the lifesaving treatments and surgeries that I endured over the past two years.  I am not ok with this.  I want to be able to move the way I did prior to cancer, or at the very least, without pain on a daily basis.  This is my new normal?  No thank you.

Sexual dysfunction and discomfort

Treatment for cervical cancer often involves radiation or a hysterectomy (or in my case, both).  Both of these cause scar tissue which can build up in the vagina and make sex uncomfortable or in some cases impossible.  Women are told to use dilators to keep their vaginas open, but quite often sexual discomfort is just deemed as part of your new normal and something that you and your partner need to work around.  This reality should never be considered normal.

Bladder/Bowel Issues and Ostomy Bags

Because cervical cancer patients receive radiation and surgery so close to their bowel and bladder, quite often these tissues are damaged beyond repair, and in some cases, cancer spreads to these areas. I have undergone bladder reconstructive surgery, which thankfully was a success, so I did not need to have an ostomy bag (I have been spared this “new normal” for now.  However, I know many women for whom this is not the case.) Unfortunately, the surgery has left me with a smaller and more sensitive bladder.  I have to pee all the time…even when I have just gone to the bathroom.  Not normal.

Anxiety (over every small pain, out of the ordinary symptom and particularly before scan appointments).

After having cancer, every small twinge of pain, every weird mark on my body, every unexplained symptom becomes possible cancer.  Eye Twitching? Retinal Cancer.  Headache?  Brain Cancer.  Bruise I don’t remember getting?  Blood Cancer.  It is exhausting being this worried all the time.  But once your seemingly healthy body receives a diagnosis of cancer, you can’t help but think that your body will betray you again.  And now that you know what this betrayal means in terms of treatment, the anxiety becomes even worse. Being afraid of your own body is my new reality.  But it is not normal.

As I write this I worry that people will think I am not grateful for the lifesaving treatments I received.  I am eternally indebted to my oncologists and radiologists, urologists and surgeons.  They did what they had to do to save my life.  But I cannot accept my “new normal.”

I think people use the term “new normal” because they think it will make us feel better.  It’s as if the fact that many people feel this way or deal with these things makes them ok.  But it isn’t ok.  We live in a time where the advances of modern medicine are occurring at an astounding rate.  We shouldn’t be complacent that these things are just our “new normal.”  We can do better.  We need to let our practitioners know that these post-cancer issues, while they may be common, are not acceptable and should not be considered normal.  These issues are not simply things we need to learn to live with. They are the current reality for many of us, but perhaps if we all collectively stand up and say, “I am not ok with this new normal!” we will be heard and more research, time and money will be spent to make sure that the life of a cancer survivor isn’t so irrevocably changed that their entire sense of what is normal needs to shift.  The things I am dealing with now are my current reality, but I refuse to accept that they are, in any way, normal.

Read more about my story here:  https://cervivor.org/stories/ana/

Losing and Finding my Womanhood

When I think back to my life post cervical cancer treatment a nursery rhyme verse comes to mind, All the king’s horses and all the king’s men couldn’t put Humpty back together again. Just like in this nursery rhyme, sometimes when something is broken, it can’t be put back together again. My body was tattered, sense of peace shaken, stamina weakened, mind weary, and I was left with a struggling relationship. I had to find a new way to walk in my survivorship, with or without a partner by my side.

Cervical Cancer and HPV invaded my body in 2005. Surgery left my belly misshapen, and the physical pain was intense. Radiation left me feeling like knives were in my bladder and behind. My emotions were like raw hamburger – all vulnerable and exposed. Surgical menopause left me hormonal and exhausted. I didn’t like myself this way and I didn’t recognize the person I had become. I think the real Shawna was hiding behind depression, fatigue and trauma. I would cry at the drop of a hat and everything felt so difficult. I was looking for the fast forward button and I was navigating it in some ways, ALONE.

Cancer can bring you closer with your loved ones or pull you apart. When speaking of your relationship with your partner, sex is one of the bottles of glue that holds you together at times. Sure, some of us have our faith in God and our commitment to each other. Let’s face it–part of God’s design to share intimacy sexually, to experience a connection that transcends words. It takes you to a higher level and creates a magical intimacy. Guess what? Having a third of your vagina cut out, sewn like a sock, and radiated makes that very difficult, not to mention the bowel accidents and skin issues due to estrogen depletion and radiation damage. There is also that dreaded relationship you are to have with your vaginal dilators, doctor’s orders. Relating sexual desire to excruciating pain is not natural but it a challenge that must be faced.

I remember trying to be intimate, but it wasn’t working out because I was not the same. “Barbie was broken.” I was in pain and I was lacking confidence in myself. I felt ugly and was very angry at my body for failing me. There is nothing sexy about broken vaginas and bowel/bladder issues. I felt unlovable, and I had what I call “Sexual Stage Fright.” I was busy crying in my pillow or running to the toilet to keep from having another accident. This is hard on a partner as well. They can’t “fix it” and we all know how in a relationship our partner really wants to fix it.

“There is no book on how to handle a depressed wife recovering from cervical cancer.” I have heard this statement before. And in fairness–no there is not. One idea is, to above all, be a human being that offers empathy and support. Words of unconditional love, hugs with no strings attached, reassurance that they will not leave, compliments about one’s appearance, and a sense of humor go very far in helping a Cervivor find their way back to a new normal. There is grieving along the journey in spite of the celebration of overcoming this disease. Be a partner that is a safe place to fall, because it is so necessary to have that space to just be. This can’t be hurried, and there is no timeline to arrive at your new normal. The real question is, can a marriage withstand the wait? Cervical cancer was not in the plans and neither was navigating a marriage on life support.

Three years after the cancer, I divorced. Issues related to cervical cancer put the nail in the coffin in our marriage; the strain was too much.

I just remember sitting in a pile crying to my mom saying, “They might as well take the last letter of my name off and call me ‘Shawn’ instead of ‘Shawna,’ because I don’t feel like a woman anymore.”

I discussed with my mom my feelings that due to my post-treatment body, I probably would not have a boyfriend any time soon. I was okay with that, because I couldn’t handle the pressure. Those days were over, or so I thought. I was wrong. So. Very. Wrong. In walks my high school sweetheart, Aaron. In 1992, we met, and there was an instant connection. We were best friends above all else, and he always just got me. He says I was always “the one” even though we parted ways at age 19. When he came back into my life he hardly recognized the person I had become. He was astounded and wanted to know what happened. I was a lot like a whipped dog. Depression is funny like that. When you lack hope and joy–it seems like you are living on “Grey Street” (Dave Matthews Band song I love!) and you can’t dig yourself out of the well.  Together, over time, Aaron helped me introduce the New Shawna to the Old Shawna so they could learn to like and accept each other.

Aaron was a best friend that encouraged me through counseling and sat beside me while I gained my strength. He knew what I needed even when I didn’t. We eventually married. When we were first intimate, it didn’t quite go as planned; my vagina didn’t quite work right. He was patient with me, and he did not put me down or pressure me to be some sex goddess. I could relax and just be.

Being a teacher we joke that I have an IEP (Individualized Education Program) for my “Who Who” because my body has some special needs. That is okay. I am okay. My husband thinks I am more than okay. At almost 44-years-old, my post-cancer body is an amazing and miraculous thing. By God’s grace, it all works still, and my husband and I have found perfect harmony in the intimacy department. I am enough for him. I am enough for me. I was always enough.

Aaron once told me, “If the cancer comes back, and they have to sew you shut, I will love you anyway. I will never leave you.” I think those were words I really needed to hear. You can be broken. I will still be here. You can have bathroom accidents. We can laugh about it and I will still be here. You can be really tired and hormonal some days, and you can nap. I will still be here. You can have broken parts and scars inside and out. I will still be here, loving you. All of you. Cancer or no cancer.

Read more about Shawna here:  https://cervivor.org/stories/shawna/