Friday, June 1, 2012

The New Normal

I can't tell you how many times over this span of almost 2 years now that I have attempted to write another blog entry.  I managed to complete a couple of sentences or at times maybe even a little over a paragraph, but then would give up out of frustration, feeling overwhelmed, or the tears would start to flow.  And this process would frustrate me even more... after all, I am a SURVIVOR, therefore I should want to now live life to the fullest, seize the day, etc.  And there is a part of me that desperately does want to embrace life in a way I never have before, but the last 2 years have instead been spent primarily attempting to define what oncologists have termed the "new normal."

I will let WebMD explain this term for you.  "After a marathon of breast cancer diagnosis and treatment that may last six months to a year, you can hardly wait to get back to a normal life again.  But the day of your last radiation treatment or chemotherapy infusion doesn't mark the end of your journey with breast caner.  Instead, you're about to embark on anther leg of the trip.  This one is all about adjusting to life as a breast cancer survivor.  In many ways, it will be a lot like the life you had before, but in other ways, it will be very different.  Call it your new normal."  Some well-meaning professionals and organizations even encourage accepting or embracing your "new normal" as a survivor.  I reflected upon their tips as well as their testimonials and interviews with other survivors. And in the end, I say screw the "new normal!"... I just want my life back!!!

One of the main reasons I have been so reluctant to write about this leg of my journey is fear.  I don't want to seem ungrateful for my current health.  I also don't want to be perceived as being over-dramatic, negative, or as someone who is stuck playing the victim role.  The reality is that some of the women who sat beside me in the chemo chairs are no longer on this earth, yet I am alive with "no evidence of disease."  And while I am humbled by God's healing in my life, I feel compelled to honor a promise I made to myself at the beginning of this journey to be candid and honest about all of the highs and lows along the way.  I am choosing today to write again because it is an important step in my being able to live beyond cancer, and because I know that there will be other survivors in the future who will read this blog.  I owe it to myself and to them to "be real."  So, to those of you reading who have not yet experienced a major illness or crisis in your life or family, some of what I have to say may not make sense to you.  I just pray that God can use my willingness to be vulnerable and transparent as a way to encourage and comfort others.

Now that you have been given some context for this posting, I would like to share with you some lessons I have learned as a cancer survivor. Lesson 1:  Chemo brain is very real and can last long beyond the final chemo infusion.  I will be the first to admit that I have never possessed a stellar memory.  However, I did notice a significant change in my brain and memory during and after treatment.  I have joked several times with my friends by saying "my memory is like Swiss cheese, there's holes in it everywhere."  Many of these memory gaps are during the span of the last few years after my diagnosis.  Some of my cloudy memories have been improved by friends and family filling me in on the gaps and details.  Other memories I am learning to accept may need to be let go.  I don't mean to give the impression that I can't find my way home, or that I am incapable of functioning in life.  I have just learned that, at least for now, I have to afford myself a little help with some tasks like keeping a calculator nearby to do even simple math.  I also continue to need to make notes in my phone of the names of new people I meet and to review those or else I have a tendency to give a new name to new friends, and sometimes even to people I have known for a year or more.  Luckily everyone has been gracious and had a good sense of humor about it, but it is important to me to continue to build friendships which requires learning names and remembering significant events in people's lives.  (P.S.  to all of you whose birthdays I have neglected or completely forgotten the last few years, I sincerely apologize... I am working on it.)

I know that as you read this, some of you will hesitate to believe what I am saying and will think to yourself, "it can't really be that bad."  I have experienced this from others before.  As my hair was growing back in under my wig, I was the only person who knew what I REALLY looked like at the end of the day when the wig came off, the fake eyelashes were peeled off, and the drawn-on eyebrows were washed off.  I told my friends and coworkers that my hair was coming back as "a gray fro"... and I would see it in their eyes... they were thinking that I must be exaggerating.  So, I showed them the photographic evidence which I will now also share with you...

The Gray 'Fro on the day I went to the hair salon
My new hair after Lisa worked a miracle

With my hair dresser Lisa right before
 she shaved my head (at my request)
So, now do you believe me!!???  Just think... if THAT is what chemo did to my hair, imagine what it did to my brain and the rest of my body.  Even though going bald and then having old lady hair grow back on my head is not necessarily a pleasant experience, in a way I am grateful for all of the hair changes that occurred.   My absent or greatly transformed hair always served as a tangible reminder to me of the ordeal I was experiencing.  So, while I absolutely refused to let the Gray 'Fro be the new look of my "new normal,"  I did appreciate that it reminded me why my "new normal" was so challenging at times.  On a side note, after finishing chemo it is advised to NOT put any color or chemicals on your hair for 6 months because the lingering chemo can cause a reaction.  So, 6 months after my last treatment, I eagerly went to see Lisa Harris at Shag Spa & Salon in The Woodlands.  (Lisa was the sweet woman who shaved my head when my hair began to fall out.)  When I sat down again in her chair less than an hour after taking the photo above, I said to Lisa, "Don't worry, if my hair turns purple or falls out, I won't blame you... don't be scared of it, if it turns out bad, we'll just shave my ahead again... I still have great wigs I can wear!"  So, she bravely took on the challenge of taming the Gray 'Fro and made me look human again.  I will be loyal to her hair dressing skills always!

Lesson 2:  Post-Cancer Fatigue is no joke!  During the "big" treatment interventions like surgery and chemo, I helped myself to cope by envisioning my "finish line."  To me, this would mainly happen after I finished my final chemo treatment, and then the remaining reconstructive surgery and a little pill called Tamoxifen would be "no big deal".  So I clung to the idea that once I completed chemo I would quickly begin to feel like myself again and have the energy and desire to go out in the world and live my life.  And while I did feel somewhat better immediately after chemo ceased, my dream of bouncing out of bed and running toward my new life was not realized.

Through the cancer experience, I have been exposed to a variety of types of fatigue.  There's the physical fatigue from stress and major life changes, emotional fatigue from the shock of a diagnosis and the ramifications, and the mental fatigue from trying to make treatment decisions while still juggling a life outside of cancer.  Then of course there is the physiological fatigue from multiple surgeries, chemo, fertility treatments, hormone therapies, etc.  Let me just tell you that dealing with a marathon of fatigue is exhausting!  There were SOOOO many times I wanted to scream from a rooftop "I am so tired of feeling tired!!!!!!!"  The good news is that it has been my experience that the fatigue does improve over time... it just happened at a much slower pace than what I wanted.  Even once I was "healthy," there were many days I came straight home from work and went to bed before 7pm.  And many weekends that in my heart I wanted to be out with friends or working on a project at home, and instead found myself napping frequently.

My FAVORITE part of my job-
holding newborn babies!!!
When you read books and websites on cancer survivorship, you will discover that chemo-brain and fatigue are common issues.  And there are many tools and suggestions given for ways to cope and compensate.  I still use some of them.  I also came to a point in my personal journey when I had to make a very difficult decision.  In January of 2011, I decided to make a job change.  This was a heartbreaking transition for me because the doctor and staff I worked with for the previous 4 1/2 years had become like family to me and had stood beside me through all phases of my cancer battle.  "How can I abandon them after all they have done for me?" was the question that tortured me.  The truth was that I was physically, emotionally, and mentally exhausted and depleted. I could still perform my job effectively, however doing so took 2-3 times the energy that it did prior to cancer, and I found myself feeling that a change was necessary.  So, my boss and coworkers were sad about my departure, but gracious in wanting what was best for me.  I then started working with newborn babies and their parents, which was the absolute best way to restore my soul.  Aside from spending time with God, nothing fills my heart more than holding a little baby. I am grateful God provided the opportunity and timing, and I am continuing to work full time with The Motherhood Center and really enjoying it.

Lesson 3:  NEVER underestimate the power of hormones.  There are several, but for the sake of keeping things simple let me just say that too much or too little estrogen can greatly effect the day to day functioning of any woman.  Of course there are the famous mood swings and weepy tears, but that's only the tip of the iceberg.  Hormones also greatly influence memory, mental clarity, and energy levels.  One of the last steps of my recommended treatment regimen was to complete 5 years of anti-hormone therapy by taking a once a day pill called Tamoxifen.  I didn't think twice about it or hesitate to begin treatment.  After all, once you have been through the scarier steps of surgery and chemo, taking a little pill can seem as easy as taking a multi-vitamin.  So I was surprised by how much the side effects of Tamoxifen impacted my day to day functioning and life.  I worked closely with my doctors and treatment team to try to manage the side effects enough to reach a level that I felt I could sustain for the following 5 years.  But after a year and a half, I chose to discontinue the Tamoxifen.  Now, I want to be crystal clear in saying I do not believe Tamoxifen is in itself a bad medication or treatment option.  If the side effects had not been so significant for me, then I would have completed the recommended 5 year course of treatment.  There was a part of me that didn't even want to mention my Tamoxifen chapter.  However, just in case there may be another woman also struggling as I did with side effects, I decided to share this so that you can know you are not the only one.  Yes, many women take Tamoxifen or other anti-hormone therapy drugs and have minimal or no side effects, but there are women who notice significant changes on theses medications.  If you are struggling, please pray about your options, ask you family for their input and any changes they have noticed while you have been on the meds, and carefully consult with your doctors before making any treatment decisions.

Lesson 4:  Delayed grief often occurs in cancer survivors or people who have experienced a major crisis. The analogy that I most like to use for my diagnosis is that the moment I got the call that I had cancer felt like someone pushed the eject button on my life... and then I began to fall from the sky, with a parachute, but with no idea where I would land.  Eventually, I did land... but was left feeling a little disoriented and trying to make sense of what just happened.  Yes, I did experience a variety of emotions, tears, anxiety, and even laughter during every step throughout treatment.  However, there were deeper levels of processing and understanding that I simply did not have the time for in the first several months.  Therefore the first calendar year of anniversaries became especially significant for me, as it apparently can be for many cancer survivors.    For example July 14th, August 17th, September 23rd, and February 26th would never again be random dates to me on the calendar, but instead the dates of my diagnosis, surgery, egg retrieval, and final chemo treatment.  When each of these one-year anniversaries hit, I felt thankful to be one year past it, but also experienced some of the emotions as if it was happening in the present.  I didn't want to live in the past, but I also recognized the importance of allowing myself to feel, or grieve, or whatever you want to call it so that I could eventually move on with life.

A  more recent photo from Feb 2012
Lesson 5:  Moving beyond cancer is a choice.  Several months ago I watched the movie "The Terminal" with Tom Hanks (as Viktor Navorski) which I had seen before, but this time I cried through half of the movie.  I so related to poor Viktor who found himself, not by choice, in a mandatory waiting area in his life.  He did manage to make the best of his time in the terminal, and he even made some friends.  However there was a life outside the terminal for Viktor, and everyone cheered when he finally was able to pass through the doors and claim it.  This story of cancer will always be a significant chapter in the story of my life.  I am forever grateful for the many lessons and blessings God provided in a season of chaos and uncertainty.  I will never be the same person I was before the word "cancer" entered, nor do I want to be.  To quote Kelly Clarkson, in many ways it has been a "beautiful disaster."  However, I have had to make a conscious choice to not automatically answer the question "How are you?" with lab results and doctor reports.  Yes, being a breast cancer survivor is a big part of the landscape of my life, but it does not define me.

The most important lesson of all:  God is the constant throughout my cancer journey and my entire life.  When I hung up the phone after my doctor gave me my diagnosis and fell to my knees in my office, I began crying and praying "God, I trust you... no matter what is ahead, I trust you."  I have been fortunate to have wonderful friends, coworkers, and family who cooked meals, drove me to appointments, cried with me, and prayed for me.  I could not have had a better support network.  But in the lowest, darkest, most overwhelming moments, my true source of comfort was God alone.  Although there may be suffering, disappointment, and losses in this life, I can honestly say that He has never failed me.  I may not always understand His plan, and I certainly have a tendency to be impatient and struggle to wait patiently on His timing.  Despite my weaknesses and foolish attempts to try and control my life, He remains faithful.  And so I now look with hopeful anticipation toward the future and life beyond cancer, and I say, "Lord, I trust you... no matter what is ahead, I trust you."