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/

Cervivor visits Advaxis

Clinical trials continue to be a mystery to many individuals. On September 30th, 2017 Cervivor, along with several advocacy groups, had the great opportunity of gathering at Advaxis for a collaborative meeting to learn more about clinical trials and how they can impact the future of cancer treatment, including innovations in the area of cervical cancer treatment.

Through innovation, collaboration, and dedication we can help improve the accessibility of clinical trials to patients; therefore, increasing participation in clinical trial research. This research is necessary to introduce cervical cancer treatment options with lower risks and side effects.

Dr. Sharad Ghamande of Georgia is at the forefront of clinical trial research and application in his gynecologic oncology practice. As he noted, “Cervical cancer is the worst cancer for women worldwide.” There has to be a more effective way to treat this prevalent cancer.

Next, we headed out for a tour. This was one of the most amazing things we were able to do while at Advaxis! We started out by learning how the clinical trials Advaxis is currently running were developed and are progressing and then we actually got to head out into the building and see where the action happened! There were people hard at work throughout the building and you could tell the dedication to improving cancer care was in the air. One of the employees told us that he started working there because he knew, there just had to be a better way to treat cancer.

I was honored to serve on a panel with Dr. Ghamande and John Heyburn of Advaxis to discuss clinical trials. I served on the panel to bring the patient perspective to the discussion. Over the past several months I have been researching clinical trials, applying to many trials, and recently began participation in a clinical trial. As a panel, we discussed many barriers in the current clinical trial structure: many individuals do not know what a clinical trial is or that they may be eligible for one; some clinicians only offer clinical trials as a last resort, or, not at all; and some patients become frustrated with the process it takes to participate in a clinical trial once they begin.

As a patient who recently went through the process of finding a clinical trial I can tell you that it was stressful at times. I was declined from one trial due to the fact that another site filled the open slot before I could begin testing to see if I qualified, I was declined from another clinical trial due to the fact that I had been treated with a specific chemo on two separate occasions, an additional trial I missed out on due to my insurance declining an accompanying medication while the open slot filled up. As a patient, I felt defeated and scared. I was terrified due to the fact that while all of this searching was going on I was not being treated. Once we found a clinical trial to apply to I had to start a battery of tests to ensure that I would be able to participate. I was so worried that something would happen and I would end up not qualifying I didn’t even tell anyone I was starting a trial until I was physically hooked up to the infusion.

Serving on this panel was an amazing experience for me. I was honored to sit around the table with leadership from many organizations and share my experiences with them. It is amazing the power of a patient voice.

Are you currently in treatment for cervical cancer or recently in remission? There may be a clinical trial that is available which could meet your treatment needs. There are trials which work with concurrent treatment for active cancer and even trials which are available post-treatment to help ensure that you stay in remission. Reach out to Cervivor if you would like more information about clinical trials. Also, check out our clinical trial section on our website at http://cervivor.org/hpv-and-cervical-cancer/treatment-clinical-trials/.

To read more about Erica’s story check here: www.cervivor.org/erica