Pain Is Real, But So Is Hope

 

“Hope is being able to see that there is light despite all of the darkness.”

Desmond Tutu.

In the darkest moments since my diagnosis, at times it felt like all I had was hope. Perhaps I didn’t always identify it as “hope.” Sometimes, it was faith in God. Other times, it was just a pure, raw will to survive. It also manifested in my thoughts when I looked at my husband and knew I could not leave him. We had way too many years left to live together. Having hope was not always a conscious decision either. There was just simply no other way.

Hope can be defined as “a feeling of expectation and desire for a thing to happen.” It can also be defined as “a feeling of trust.” These simple definitions mean so much within the context of my diagnosis. I hoped that I would survive my surgery, that the surgery would successfully remove the tumor without completely damaging my brain, that the radiation would keep the cancer at bay, and that I would ultimately be one of the success stories. I also put my complete and total trust in my neurosurgeon, my oncologist, my radiation team, and the whole slew of medical professionals working to save my life. I didn’t just hope for these things though. I prayed. I begged God to protect me. I cried to my family that this retched disease would not kill me.

I never made a conscious decision to choose happiness and positivity when first learning my diagnosis. In fact, looking at the situation with such a hopeful attitude was actually contrary to how I typically viewed things in my life. I had always been such a cynical, negative person. Yet, without a second thought, I found myself determined beyond question that I would survive this.

 

There was also no choice, but to be strong and hopeful. One particular situation always comes to mind when thinking about these feelings. After my surgery, as soon as I was cleared to get out of bed, I took my IV stand and started walking laps around the unit. I never thought about it, I just did it. At first, I couldn’t do it on my own. After about a day, I built up my stamina to walk without any assistance. Sure, I was slow and unsteady, but I did it. I had also colored a picture of butterflies and hung it on the IV stand, so that whenever a nurse or another patient saw me, they smiled. On the last day, just before I was released, one of my neurosurgeon’s team members saw me walking the unit. She stopped me and said, “You’re going to be okay, Mrs. K. I know it.”

On the flipside, my roommate in the hospital did not seem to be very hopeful. Looking back, I wish I could have spoken to her and talked about what she was feeling. I was so focused on my survival that I didn’t stop to think about what she was going through. She refused to get out of bed, despite the nurses and doctors urging her every few hours to do so. Every instruction the medical staff gave her, she ignored. I overheard a phone conversation she had, in which she was explaining that she didn’t ask people for help and was frustrated that she needed help.   As I waited for the endless paperwork the day I was released from the hospital, I overheard my rommate’s doctors telling her that she would not be released for quite some time. I find myself thinking about her a lot, and I hope she eventually found her inner strength, her hope.

 

There are times when my strength falters. When something negative happens, I don’t always handle it well. At times, I feel irrationally upset by trivial issues and situations, which don’t deserve my time and valuable energy.  Yet, no matter how upset these minor issues can make me, I always come back to the most important things and what truly matters – that I am still here, living, breathing, thriving and surviving.  And so, I continue to live day-by-day, expecting and trusting that life will continue because really without that hope, what do I have?

“So, what next?”

find-more-time     As a teenager, I would long to be older, always wishing I could do all the things I was too young to do. I wanted to turn eighteen, leave high school behind, head to college and finally get away from the constant, watchful eyes of my parents. Then, after I turned eighteen, I couldn’t wait to turn twenty-one so I could finally walk into a bar and freely enjoy a beer. Once I was a senior in college, the focus became graduating and going onto law school. In my last year of law school, I constantly stressed over getting a job and beginning my career.

As I came closer to thirty, it was all about getting married. I worried if my then-boyfriend (now husband) would propose, and whether we would have enough time to have children before I was thirty-five. After deciding to continue our lives together, I worried whether we would have enough money in the coming years to buy a house, to support our family, and so on. Beyond that, I constantly questioned where I would be in my career in five, ten years from now?

These self-imposed timelines completely hindered my ability to live in the moment, to just sit back and enjoy all of the wonderful things in my life. I was always looking to that next milestone and worrying whether my life would fit into some neat little box of expectations I created for myself. It was like I was living my whole life waiting for the next month, year.. the next step.

 Since my diagnosis, everything has changed. At thirty-four years old, having literally come close to death, I now relish every minute of my life. I no longer worry about that next step. I just take things as they come.

Despite battling for my life and facing my own mortality as a young adult, it has truly been the best of times, and the worst of times.

 I have never been so frightened as when I was being wheeled into that operating room. I did not know if I would survive. Maybe even worse, I feared I would wake up a different person, or debilitated and unable to function as I had before. This disease had quite literally invaded my brain, the strongest part of my body, and taken it hostage.

After surviving brain surgery, I was hit with the news, “The tumor was malignant and a very rare, very aggressive type with a high rate of recurrence.”  How could this even be happening? What about all of those timelines for the future? Would I even make it to see thirty-five, forty?  And then I asked, “Okay.  So, what next?”

Then, a whole new set of timelines entered my life… the time period before radiation would begin; the amount of treatments and length of radiation; the time between my follow-up scans; the months between my oncology appointments; and most importantly, the time before I could say, “I’m in remission.” All of those previous, self-imposed milestones suddenly felt so trivial.

Yet, in facing the worst time of my life, I began to see the incredible beauty of my life. I recognized how strong I was mentally, emotionally, physically and spiritually. I also came to see how others had always recognized my strength, even if I hadn’t seen it. I heard so often, “If anyone can get through this, you can.” Also, while I was always very close with my family, I truly realized how much I was loved. I cannot put into words the feeling of hearing my mother say, “It should have been me. Why wasn’t it me and not you? I wish I could take your place and make your pain go away.” Even before cancer, my husband has been my best friend and “my partner in crime.” Now, having gone through all of this in less than two years of marriage, I can without a doubt say he is my soul mate. As for my friends, they have become like family. I truly never recognized how much they cared until this experience. In so many ways, I am so lucky.

I would not wish cancer on my worst enemy, but it has brought such a deeper meaning to my life. I hope and pray that the worst times are behind me now. Regardless, I have learned to appreciate the good times, the best of times, so much more. No matter what life throws my way going forward, I will continue to appreciate every moment. And for that, I am thankful.

Time, Fear, Hope…

Chronophobia-Fear-of-Time1-300x199

Time.  Fear.  Hope.  These simple thoughts/concepts dominate so much of our cancer experience.  I would doubt that there is a single person facing a cancer diagnosis, who hasn’t contemplated all of these things, in one way or another.  Every one of these ideas will be the focus of or touched upon in posts throughout the blog.

During my “Healing With Words” group (for more details about this fantastic program, see my post Helpful Resources and Information I Wish I Had When First Diagnosed), we were provided with various inspirational, reflective quotes on time, fear and hope. Many of these struck a chord in relation to my diagnosis.

As I find more quotes, I will continue to update this post.  For now, here are some of those quotes.

Quotes on Time

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, and will tell. – Franklin P. Jones

You don’t get to choose how you’re going to die. Or when. You can only decide how you’re going to live. Now. – Joan Baez

Time has a wonderful way of weeding out the trivial. – Richard Ben Sapir, Quest

 The best thing about the future is that it only comes one day at a time. – Dean Acheson

Quotes on Fear

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself. “I lived through this horror. I can take the next thing that comes along. – Eleanor Roosevelt, You Learn By Living, 1960

The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown. – H. P. Lovecraft

Fear can be more dangerous than any disease. It swipes our joys and tramples our hopes. Days, weeks, even years can slip through yours fingers. If left unchecked, fear will strangle every breath from our lives. – Kris Carr

Quotes on Hope

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.” – Anne Lamott

“Hope is the thing with feathers, that perches on the soul” – Emily Dickinson

“In the face of uncertainty, there is nothing wrong with hope.” – Bernie Siegel

“In every winter’s heart there is a quivering spring, and behind the veil of each night waits a smiling dawn” – Kahlil Gibran

 

“Uh, I’ve had the worst week of my life.”

“Uh, I’ve had the worst week of my life.”

So, not everyone has survived brain surgery, twice, and battled brain cancer, twice.  I fully recognize that.  Living with cancer and the trauma of it all has brought me an invaluable perspective on life.  I know that people cannot truly understand my experience without having personally faced cancer, or any life-threatening illness really.  Even among cancer survivors, each and every one of us has our own story and struggle.

With all that being said, I was not prepared for the vast array of reactions to my diagnosis.  I was told that people would surprise me in the most unspeakable, incredible ways, and others would surprise me in the worst ways.  Truer words have never been spoken.

After learning I had been diagnosed with cancer, the majority of people said, “I just don’t know what to say.”  Honestly, that’s all you need to say.  There are really no “right” words.  There may be a lot of wrong ones (I’ll get to that), but I found that as long as the love and concern was there, that was all that mattered.

The day before my surgery, I received a framed photo of a group of my friends, taken while we were in the Caribbean just months before, ironically celebrating my 34th birthday.  As my friend handed me the frame, all she said was, “We love you.” It meant everything.

Following my surgery, one of first the gestures that struck me was the onslaught of food people brought over and sent to our apartment.  It was amazing!  I never imagined that such a simple thing would mean so much.  By the way, I highly recommend chocolate.  Chocolate helps everything.  And while I couldn’t personally enjoy a glass of wine while recovering from surgery, my God, would I have loved a few bottles sent my way!  Wine also helps everything.

Coming from a strong, Irish Catholic family, and having married into one, I received an incredible amount of prayer cards. I would not consider myself a particularly religious person in the conventional sense, but every prayer card and mass touched me deeply. I do truly believe all of the prayers helped in my recovery.  Even if you don’t believe in God, or a higher power, I feel there is a powerful energy created by all of the good vibes/thoughts/rain dances people send your way.

I do not have any immediate family in this country, aside from my parents. Recognizing that, my husband’s family stepped in and scheduled among themselves what days they would each care for me in the weeks after my surgery. Not having to ask them for help  meant the world.

Soon after my diagnosis, one of my closest friends dedicated a race to me, posting that I was an inspiration to her. Throughout our friendship, I always saw her as the strong one. Now, I was serving as her inspiration and strength.

These are only a handful of the incredible ways people responded to my diagnosis.  Yet, there were many hurtful and painful surprises along the way too.

A week or two into my radiation treatment, and just about six weeks after surgery, a particular person asked how I was. I did not want to have a long conversation on just how badly I was feeling, so I breezed over exactly how I was doing. When I asked how she was doing, she started out by saying, “Uh, I’ve had the worst week of my life.” She proceeded to tell me the most mundane, ridiculous story about a series of meaningless events that happened throughout her week work. It was one of the most insensitive things anyone has said to me throughout this entire experience.***

During one of my particularly hard weeks, I mentioned to that same person that I was experiencing some very bad anxiety. Her exact words were, “What do you have anxiety for?” It seemed unbelievable to me that she actually couldn’t conceptualize how this experience could cause me anxiety. I reacted in a very snarky way, and not even recognizing my obvious sarcasm, she then proceeded to tell me what I needed to do to help my anxiety. It was not advice I wanted, nor needed.***

***And before you think, “Who is this person?, I will just say it is a person, who should have known better, but who I dearly love and care for.***

People just want to seem like everything is normal, so they tend to act like everything is normal.  The problem is – being diagnosed with cancer in your early 30s is NOT normal.  None of us want to be treated differently simply because of cancer.  Yet, that term “perspective” constantly crosses my mind.  Suggestion #1: Do not talk about your stray grey hair, as my hair is literally falling out in clumps due to radiation to my brain.  Suggestion #2:  Do not tell me that as soon as I recover from brain surgery, I can start thinking about having babies.  Suggestion #3:  Do not compare breaking your leg to my brain surgery and brain cancer – I’m sorry, but they are not the same.

“Don’t worry.” I have been told this more times than I care to think about. I do know that it comes from a good place, and that when people tell me this, they just want me to be okay.  They don’t mean to place added stress on me, or make me feel like I have to be strong for them.  I do just wish more people would instead say, “I understand. It’s scary.  This absolutely sucks.” They could acknowledge how serious my diagnosis truly is and use multiple expletives, like I tend to do. When people tell me, “Don’t worry” I feel that it discounts or minimizes the legitimate fear I have about this possibly ending my life.

Another comment I’ve struggled with is, “You look so good!” I admittedly do not look like the “typical” cancer patient we see all over television and film.  You know, the bald head, sunken eyes, grey skin and skeletal frame.  I look just like everyone else, minus the bald spot and enormous scar on the top of my head.  That may be what scares people though.  I feel that when someone looks at me knowing I have/had cancer, while seeming so healthy and normal, it makes them fear that cancer can happen to anyone.  It could even happen to them.  In some ways, I think people would be more comfortable facing my diagnosis if I fit into that characteristic cancer patient aesthetic/chic.

Despite some of the more hurtful reactions, I have come to be extremely patient and empathetic towards other people’s struggles.  The title of Robin Roberts book Everybody’s Got Something sums up that notion well.  Everyone has their own pain, heartache, longing, fear.  Again, we each have our own story and struggle.

No one is prepared for cancer.  There is no handbook to direct us on how to react, whether you’re the person facing the diagnosis or you’re the loved one of that person.

One of the most poignant moments in discussing my diagnosis was when I expressed my worries about a recurrence with my oncologist. She looked me in the eye and said, “We will deal with that if it happens.  Then, we will make a plan for what our next steps will be. For now, just live your life.”

So, every single day I come back to those words: “Just live your life.”  No matter what the day will bring, or what the day has brought, this is my mantra.  Cancer has brought some terrible things into my life.  Yet, it has given me this new, beautiful, profound perspective on life, and that is something I will cherish forever.