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:  http://cervivor.org/stories/ana/

My Health is a Priority

I believe that most of us know that health is important. I can tell you from experience that without health not too many things matter, yet most women forget to put themselves first, especially when we have kids, a family, work, a career, school, and so many other things to take care of.

I had to learn to put my health as my number one priority. I learned this by traveling two difficult journeys. Today I know that being healthy is my wealth. There is no guarantee in life, but I know that by being as healthy as possible I give myself the best possible odds to lead the quality of life that I deserve. I am the keeper of my health.

In 2008, when I was diagnosed with stage IIB Cervical Cancer, I had not visited my gynecologist for three years for the same reasons that so many of us have – I had a busy schedule, I had no symptoms, I was healthy (so I thought), I was in a monogamous relationship (I was married for 10 years at that time). What can go wrong? Right? I found out fast that plenty could go wrong. This led me to a very difficult journey. I had to go through chemotherapy treatments, external, and internal radiation. At times, I wanted to give up on myself. It is scary to be face to face with your own mortality.

With lots of faith, and support I was able to come out on the other side. I had another chance at life. Unfortunately, I did not take advantage of this – perhaps I am a slow learner or perhaps I just needed to learn the lesson well. I was having a hard time finding my “new normal” after cancer. Some of us cancer survivors barely speak about the aftermath, and the secondary effects that we have to endure after the battle, maybe because we are just so grateful for our second chance, that everything else seems like a small price to pay. Make no mistake; it is not easy to reinvent yourself or to pick up the pieces. It is not easy not to think about the monster that left scars in our bodies and in our minds. Will it come back? We live with the fear of the nightmare every day.

I found comfort in food. Food made me feel safe and warm. Food filled the empty hole I had. Food numbed the anxious feelings that I felt in the aftermath. However, eating without any control brings consequences. My scale tipped at 240 pounds. I am only 5’3”, and my doctor said that I was officially morbidly obese. Due to being overweight or I should say morbidly obese, I developed several illnesses — diabetes type2, high cholesterol and high blood pressure.

I took several medications to control these illnesses, and had many warnings from my doctor to do something about my weight. Warnings that I ignored. It was not until my medications began NOT to work and forcing my doctor to think of other measures to take (like injecting the insulin) that I finally realized that I had to change my lifestyle. I was sabotaging the chance at life I had been given.

The journey of losing weight is not an easy one, but it yields endless benefits. You have to be determined, patient, consistent, and focus. In 2011, with the help of people with knowledge in this area, I embarked on a weight loss journey, and I was able to lose 113 pounds by eating sensibly, portion control, and exercising. It took me approximately 14 months to get to my goal. It was NOT an easy task, I had my ups and down. I had to dig deep within me to find the determination that I will stay the course to the end – no matter how long it took me, and no matter what it took. Unfortunately, there are no easy programs, and no easy fixes to lose weight. Ultimately, you are your own force.

I was able to reverse all my illnesses, and I do not take any kind of medication anymore. All of the hard work paid off. Being healthy closes the doors to many illnesses. I learned the meaning of FREEDOM. Now I go to my doctor with the confidence that he will not be saying to me all the things he used to say before like a broken record, which I hated to hear – because I knew better. Today I can say, “I beat cancer, and I beat obesity” – But honestly – it does not end there, it is a daily struggle for me. I fight fear, I fight demons left behind in order to move forward, but it is all worthwhile.

I changed my lifestyle. The lifestyle I choose to follow for all my days to come, and even though I fail at times, I know that my bad days do not dictate my tomorrows. I am grateful for many things especially where I am now in my personal development. I am healthy. I am strong. I am wiser. I am happy. I am gentler on myself, and others. I am listening more. I am learning. I am teaching.

Health does not look the same on everyone, nor is it a straight road. However, we have to take the responsibility to care for our body, mind, and spirit. You do not have be a size 4. You do not have to eat perfect all the time. Your workouts do not have to be intense. You need to do the best you can with what you have on a daily basis. Consistency is the key. Nothing worthwhile is ever easy.
I wish you all much health. Remember, you are the keeper of your health.

Patti is 9-year cervical cancer survivor and a Cervivor Ambassador. She is a Wellness and Life coach. Certified Personal Trainer, Group Fitness instructor, and a Certified Diet and Weight Management Adviser. Patti is also one of the moderators for our Survivor Slimdown Project.