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What did I do as a caregiver?  I endured.

I can remember the call that quite literally changed my life.  On the other end of the phone was my wife, the mother of my children, my friend, telling me she had cancer.  I heard somewhere once there are events that split your life into “before” and “after.”  I remember in that moment thinking that things weren’t going to ever be the same.   

Heather and I met our sophomore year in college.  Our connection was almost immediate, and before long we were traveling back and forth between Indianapolis and Springfield, Ohio.  We’ve been together over 20 years.  We have 2 children, Lily 12 and Sammy 9 who consume our lives.  As a family we live life to its fullest; our summers are spent in the car exploring the country soaking up mountain air, lake water, and family.  It’s hard to remember life before Heather and nearly unbearable to imagine it without her.  A few times a year I try to sit and write to her what she means to me, I’ve yet to find the words to truly describe the role she plays in my life.  In the late summer of 2008 Heather was diagnosed with stage 4 cervical cancer.        

Writing this blog has been hard.  I want to try and give advice to folks going through situations that seem impossible.  I want to write about the things I think I did well and where I fell short.  I want to share a thoughtful reflection on a tough situation, but in reality, I was equal parts scared to death and exhausted for the better part of 6 months.  I was scared I was going to lose my wife, and my wife is not one you want to lose.  I was scared my kids were going to lose their mom and scared I’d be raising them alone.  I was scared that I wouldn’t have my friend anymore.  When I wasn’t scared I was exhausted.  I was exhausted from having a 3-year-old who wasn’t sleeping, and a 6-month old with colic.  I was exhausted from being a young principal of a brand new charter school that opened 2 weeks after the diagnosis.  I was exhausted from shuttling kids to school and back, Heather to treatments, managing things at home and school.  I was emotionally exhausted from the seemingly endless worrying about one thing or another.   The truth is, it was hell.  Since that experience, when someone asks me how I’m doing, regardless of how bad it is, I always say, “I’ve been a lot worse.”  

What did I do as a caregiver?  I endured.  I just kept going and tried to do things that could keep us all moving forward getting through one day at a time.  Ultimately my role as caregiver was to show up everyday and do the very best I could.  That’s really all anyone can ask of you, and it’s literally all you can do.  In reflection, I think the best parts of me got better and the worse parts were exacerbated.  Some days I was great: fully present, clear, focused and positive.  Other days I was a mess: overcome with fear and anxiety, grumpy, and emotional.  Regardless, everyday I was there, and Heather knew I would be there.  She knew I would get the kids where they needed to go.  She knew I would be by her side during chemo and radiation.  She knew I’d deal with a 3-year-old Lily who screamed when you left her bedside.  She knew I’d bounce Sammy on the exercise ball for hours to get him to stop crying.  I’d be there, on the good days and the bad.  She didn’t expect me to be perfect, or perpetually optimistic, she just expected me to be me and to be there…and I was.    

Through this experience, I learned a lot about what it means to really be with someone.   I learned that I can show up for someone in ways I’m not sure I knew I could before this.  I learned that I’m stronger than I thought I was, and that my Heather is truly the strongest person I know.  I learned a lot about letting people in and being vulnerable.  For me, being a caregiver meant calling upon all I had to get through one day and onto the next.  It meant bringing the best parts of myself to the tasks we were presented with each day.  I tried to focus on what I knew how to do well to gain some sense of control during what felt like chaos.  Each of us has gifts we bring to the best times in our lives, those same gifts can be called upon when days are dark.  

The Banks Family

I’m a stubborn person.  It’s a strength and also what one of my dear friends would call a “strength overdone.”  I didn’t care about how many questions I asked, being redundant, or taking all the time we needed from whomever we were talking to.  I was unapologetically pushy; I was exhaustive in my efforts to make sure we got every ounce of information we needed.  When the scheduler gave us a date for surgery that was just too far out, knowing her cancer was stage 4, I told them we’d be there in the waiting room the next day, and we’d wait until something opened up regardless of how long we were in that waiting room.  I took the annoyed looks.  I took the eye rolls.  I didn’t take no for an answer.  I knew this was something I could bring, so I brought it.     

I can be paralyzingly analytical and I’m an obsessive notetaker.   In meetings with doctors, conversations with nurses, and follow-ups after treatments, I tried to be the clear set of ears, listening intently and taking copious notes that we could review later.  I read and researched and generated questions for appointments.  I read back notes to Heather and tried to look at multiple options and perspectives.  I’m positive I would not have wanted to be a nurse or a doctor dealing with me.  These tasks kept me feeling some sense of control over the situation.  I had power over the plan I created, and power meant I wasn’t helpless or completely out of control.  

I’m comfortable being busy, I prefer it.  I busied myself with the pace of the day.  Getting Heather where she needed to be, talking with Doctors and nurses, shuttling kids to and from daycare, work, dinner, bedtime, etc.  Taking on all these tasks filled my time and occupied my mind.  Being idle is not something I’m good at, so this function of the caregiver role worked for me.  I collapsed at the end of each day, nearly too tired to focus on the fear and doubt.  

There were also things I was terrible at as a caregiver.  I was resistant to help from outside.  Vulnerability is something that doesn’t come easy for me.  I try to be self-reliant and self-sufficient, but cancer doesn’t much care about those attributes or dispositions.  Cancer will bring the most independent person to their knees, and I was on my knees plenty.   I should have let folks in more when they offered.  I should have let go of my own pride and accepted more help.  Looking back i see that others needed to help and that the role of caregiver is one that should be shared.  Looking back, I would embrace those around me more and let them in.  My sense is that they needed to help in order to deal with what was happening just a much as I did, and I wish I would have recognized that then and let them in.  Family and friends were there nearly everyday to help with physical tasks and emotional support.  Our moms and dads, brothers and sisters, were all there when we needed them, but I was often reluctant to call or reach out.  At work my team did more than I could have ever asked for to help the school function when I wasn’t there physically or mentally…and I didn’t have to ask.      

I often let my fear get the better of me.  My mind would race and my anxiety would rise.  I would slowly convince myself that the worst was not only a possibility, but a likelihood.  There were nights I didn’t sleep for fear of losing Heather.  At the time I didn’t reach out for help with those feelings, I just pushed through.  The days, weeks and months following surgery and treatments proved difficult and eventually, I started talking to someone and working through it.  Truth be told, I have, to this day, an irrational fear of cancer.  When I have an ache, pain, or something lumpy I immediately assume the worst.  I live with it, cope with it, talk through it with folks close to me.  I think this is the reality for so many going through a cancer experience or those who have endured it.    

Heather and I were both scared.  We talked about it but didn’t let the fear take hold in a way that kept us down.  I want to be very transparent in saying that we were lucky in that much of the news we got after the initial diagnosis was about as good as you could hope for.  We had a great medical team, a large network of family and friend support, jobs that were more than accommodating, and health insurance that meant we didn’t have to worry about finances or time off work.  For many this just isn’t the case.  That’s one of the reasons this has been hard to write this piece; I know I was lucky and that I lead a life of privilege that allowed me to manage a situation with great and abundant resources.  

One of those resources was Heather.  While I’m writing this as a caregiver, it was she who cared for me throughout this experience.  The strength, courage, faith, and grace she displayed during this time was truly unbelievable.  I had no choice be to absorb her positivity and strength, it was impossible not to.  I’ve heard time and time again that experiences like this can bring people closer together.  While I’m sure that’s not always the case, it was for us.  Heather knows she can count on me to do whatever I can whenever she needs me.  I know that I have a strong and powerful partner that has determination and faith like no other.  I know not what’s ahead of us, but I know for sure that we are together in whatever comes.       

Tarrence D. Banks, PhD is Co-Founder and Creator of The Bloomington Project School. He lives in Indianapolis, IN with his wife Heather, and their two children Lily and Sam. Read more about Heather’s cervivor story here.

Brain Surgery for Cervical Cancer?

Warning this post contains medical photos and talk that may not be for everyone.

Yes… it’s not common, but true, cervical cancer can metastasize like any other cancer. I was originally diagnosed, with stage 1b1 cervical cancer 2 years ago. I had an almost 10-year history of normal paps. Please, get your well-woman exams, vaccinate your children, I beg you, no one should go through this.

My whole brain radiation setup includes a very tight hard plastic/mesh mask to hold my head perfectly still. The radiation itself is quick (~10min), thankfully, the mask isn’t very claustrophobic. l have 3 weeks of daily radiation to keep the small lesions in check.

This all started with a swollen lymph node in my clavicle a few months ago, it came up during my routine oncology follow up, after a biopsy, it turned out to be recurrence; of my cervical cancer. I started chemo and after only one round, the node pretty much disappeared. Good news my oncologist was ecstatic. I decided to seek a second opinion at MD Anderson in Houston they agreed with my treatment plan, which was a relief. They are also going to genetic test my tumor. This is where the plot thickens. While there I developed vertigo and had a hard time moving my head or keeping my eyes open without the world spinning. And my balance was terrible, then I started vomiting with small head movements. Somehow we flew home to Portland, Oregon from Houston thanks to United for helping with wheelchairs and pushing me around airports so my husband could tend to our 2-year-old.

Hospitals are boring, so good friends help make sure your nails still look good!

The next day, first day home, I was worse, my husband went to work and I rolled over in bed and vomited all over myself. I called him, he rushed home cleaned me up, and I rested, he’s a primo man. I got worse as the day went on, called a friend to sit with me, not many people would want to hang out with someone that vomits every time they move. After she arrived we decided 911 was in order, I couldn’t move without emptying my stomach contents. Those poor paramedics. Getting me into the ambulance was a bit like the exorcist, but not pea soup. I just wanted the world to stop spinning.

Benign vertigo was the original diagnosis but a neurological exam revealed weakness on my left side so they decided to do an MRI. The ER doctor with the results was waiting for me before I made it back to my room after the MRI, not a good sign. I had a <3CM tumor on my cerebellum causing inflammation, likely the cause of my issues, they also found multiple smaller lesions in my brain, they had already contacted the on-call neuro team. I was moved to the neurological ICU, I had 2 options, hit steroids hard with hope that controlling the inflammation will lessen the vertigo symptoms or major brain surgery to remove the tumor on my cerebellum, we chose to get it out.

My “brain drain”.

The next 24 hours are a blur, I remember little. The surgery was successful, they got it all, I had an amazing surgical and nursing team. My primary oncologist even sat in on the surgery. I came out with a six inch, 15 stitch incision on the side of my head and an EVD (external ventricular drain) Google it if you’d like to learn more, but I just called it my “brain drain”. It had to be aligned at all times to my ear to drain cerebral spinal fluid and prevent too much pressure on my brain so its maintenance/care was a constant box to check by my nurses. I spent a week in neurological ICU, regaining strength, practicing walking and getting my balance back. Fortunately, the surgery brought sweet relief of my symptoms, but with brain surgery comes new issues, I have left sided ataxia/weakness. Walking was challenging initially, I needed assistance to do everything including going to the bathroom. I am walking independently now, I can do most daily self-care tasks, including showering, but recovery is tough. My fine motor skills still need work. This took about twice as long to type as pre-surgery.

My son, Wayne playing doctor. The wonderful hospital provided us with toys for my son to play with while he visited.

So my next step, I’ve already started whole brain radiation to control my brain lesions, they are too small for focused radiation. I’ll restart chemo, Carboplatin/Taxol/Avastin when radiation ends, October 18, the day after my 34th birthday. I’ll likely remain on Avastin, indefinitely. I’ll also start neuro-physical therapy and occupational therapy soon. But I’m on the road to recovery!

Learn more about my story here: http://cervivor.org/stories/lizzi/