Quotes on Wanderlust

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Through just a simple Google search for “wanderlust quotes” I found so many pieces that capture my intense desire to discover the world, its people, its beauty and so on.

These quotes aren’t in any particular order, although some certainly speak to me more than others.

“We travel not to escape life, but for life not to escape us.” ― Unknown

“Once a year, go someplace you’ve never been before.” ― Dalai Lama

“We travel, initially, to lose ourselves; and we travel, next to find ourselves. We travel to open our hearts and eyes and learn more about the world than our newspapers will accommodate. We travel to bring what little we can, in our ignorance and knowledge, to those parts of the globe whose riches are differently dispersed. And we travel, in essence, to become young fools again- to slow time down and get taken in, and fall in love once more.” ― Pico Iyer

“Perhaps travel cannot prevent bigotry, but, by demonstrating that all peoples cry, laugh, eat, worry, and die, it can introduce the idea that if we try and understand each other, we may even become friends.” ― Maya Angelou

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” Marcel Proust

“because he had no place he could stay in without getting tired of it and because there was nowhere to go but everywhere, keep rolling under the stars…” ― Jack Kerouac

“I travel not to go anywhere, but to go. I travel for travel’s sake. The great affair is to move.” Robert Louis Stevenson

 

 

“I Can’t Sit Still”

Wanderlust

a strong desire to travel

a strong longing for or impulse toward wandering

The concept of “wanderlust” truly only entered my world following my diagnosis.  Did I always have a “strong desire to travel”?  Of course.  However, I was that typical person who dreamed of traveling to far-off, exotic places, but who made excuse after excuse not to.  I never had enough time or enough money.  I worried about what my boss would say if I asked to take two weeks off to see the beauty of Southeast Asia.  I didn’t think I could ever travel alone and so, I would have to rely on someone else to join me on such a trip.  Then, they probably didn’t have the money or the time either. That itch to see the world was always there.  I just couldn’t bring myself to scratch it!

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Then, cancer happened.  Almost immediately, in the face of a very serious and scary diagnosis, I wanted to just get away and escape – the further the better.  I no longer cared about the money.  Maybe that was a little immature and careless on my part, but again, I just didn’t care.  I had a credit card or two.  I’d worry about paying it off later.

I don’t like to think about it, but I was so frightened that I would soon look back on my life and realize all of the things I had missed.  One of my biggest fears was that I hadn’t seen the world or visited places I had always wanted to see all because I had made excuses like, “I just don’t have the time.”  Hah.  It’s darkly humorous that when I had all the time in the world, I constantly complained about not having enough it…

While in treatment and not working for the first time since I was a college student, I had LOTS of time on my hands.  So, I began to think of all the places I wanted to see and things I just needed to do.  Some of them weren’t grand.  I wanted to visit Austin, Texas.  I wanted to make it to a cousin’s wedding in Ireland.  I needed to just sit on the beach or lay out by a pool.  There were the bucket-list items too.  I had to go back to Southeast Asia.  I had fallen in love with Thailand and I needed to see so much more.  I dreamed of cage-diving with great whites.  I wanted to go on a safari.  I had the whole idea of an Eat, Pray, Love journey (minus the love part, since I already had an amazing, loving husband).  Bottom-line: I needed any kind of escape away from this horrid world of cancer.

I hear about this need to travel pretty often from survivors.  The overwhelming fear that your life could end much too soon before you truly had a chance to fully live it will drive just about anyone to seriously reflect on what they hadn’t yet done/seen.

So, I began planning.  I stalked airline websites for cheap flights…  although, I did book a flight in first class to spend New Year’s Eve at my family’s place in the Caribbean.  I was going to ring the new year in with style!  I made it to that wedding in Ireland, much to my family’s shock and awe.  I spent the summer at the beach and at my friend’s pool almost every weekend.  I bought Groupon deals for hotels without a second glance.  Click click!

As I made these plans and ultimately did the things I had set my mind to do (within reason, of course), I found that the feeling of wanderlust just got stronger.  I needed to have something constantly planned, no matter how big or small.  I needed something to look forward to – to have something I refused to miss out on because of cancer.  My diagnosis was not going to stop me and those prior excuses were out the window.

Many of my friends and family were surprised that I could physically do so much traveling.  Yet, every time someone questioned it, my only answer was, “I can’t sit still.”  It was the easiest way to describe in a nutshell the intense fear and anxiety that my life would end too soon, and the overwhelming desire to wander and explore the world.

I have dedicated an entire category of this blog to Wanderlust.  It’s such an intense part of my life now, I couldn’t fit it all into one post.  So, I will just have to sit still long enough, between my travels near and far, to continue writing about discovering the world.

 

 

 

Being an “Inspiration”

Inspiring-others

I’ve had countless conversations with fellow survivors on the topic of whether we are an “inspiration” to others through our fight against cancer. Some survivors embrace it, myself included. However, some are almost offended by the notion. (Disclaimer: I don’t believe either side is right or wrong. I always preface any discussion of someone’s feelings towards cancer as extremely personal, which can never be judged as right or wrong).

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The idea of being an inspiration is something I find myself thinking about constantly. For those survivors who do not see themselves as an inspiration, the most common reaction I’ve heard is that she/he believes that they just simply showed up for treatment and did what anyone else in their shoes would’ve done.

 

One particular conversation that stands out was during my First Descents trip. I sat with one of my fellow amazing survivors, overlooking the Rogue River during our lunch break. It was so peaceful. We were relaxing back in Adirondack chairs, sun on our faces, watching the breathtaking flow of the river beside us. I’m not even sure how the topic came up really. Nevertheless, my friend (I’ll call her C. for short), who had been struck by cancer at a young age, began to tell me her opinions on the subject. Like many others, she did not believe that she was any kind of inspiration. In fact, she gave a good eyeroll about the whole thing. She thought that she had simply done what the doctors told her and that was it.

 

In reply, I shared with her my opinion. She was an inspiration. She faced an incredibly traumatic diagnosis, a particularly rare form of cancer especially given her age and her medical history. Yes, she did what her doctors told her, but she did it. Some can’t even face that decision (ex. I’ve met a few patients who refused further treatment). Then, she took her experiences and wrote her own blog. First Descents wasn’t even her first trip with an organization that challenged survivors through whitewater kayaking. Just months prior, she had been kayaking in Colorado with another organization, which she then began volunteering with. She was always smiling and joking. C. just emanated an air of happiness. So, even if to no one else, she was an inspiration to me.

 

As our trip came to a close, during our last group talk, C. told us all that her opinion on the idea of being an inspiration had completely changed. She now embraced the idea, not just in relation to herself and her fight, but in relation to all of us on that trip.

 

Another incredible survivor I met through First Descents felt very similar to C. about his experience with cancer. Again, he felt that he had just gone through the motions of treatment and that was that. Mind you, he suffered three bouts of cancer beginning when he was just nineteen-years-old, resulting in a stem cell transplant and multiple surgeries to remove several body parts affected by the cancer. I can undoubtedly say that he was not just my inspiration, but a resounding inspiration to each and every one of us. He had been through so much, yet he was one of the funniest, kindest, gentlest men I ever had the privilege to meet. To say he was a true gentleman is a huge understatement.

 

In talking with him, I told him that he was indeed an inspiration. In thinking that he wasn’t, I felt that it diminished all that he had suffered and his tireless fight to continue to be so strong. I’m honestly not sure how he felt about my opinion. We didn’t much talk about it further. I certainly didn’t intend to change his feelings on the subject. Again, whatever he felt is his own and there is no judgment towards those feelings. However, I did want him to know how I viewed him and his life, his challenges and his resounding resilience in the face of so much.

 

As for me, yes, I do see myself as an inspiration. Actually, as I sit here today writing this post, I’ve received two emails telling me how inspiring and moving my story is – one person saying it brought them to tears. I am truly honored when someone says that I have inspired them. If you think about it, people consider having cancer as one of the worst things that could ever happen. To see someone fight so hard in the face of such an overwhelming disease does demonstrate the power and resilience of the human spirit. And this is not to say that those we have lost did not fight hard enough, or gave up in any way. The idea that we are an inspiration simply means that someone can look at us, take what we have been through and honor our fight.

 

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The Rope

The Rope Exercise.

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 asked to contemplate a rope.  Most simply, what is a rope?  What does a rope do?  What are the qualities or characteristics of a rope?  Then, in thinking about those ideas, we were asked to compare ourselves to that rope and specifically, how the concept of a rope applied to our cancer experience.

Although I wrote this piece more than one-year ago, I am amazed by how it still rings so true.

            Others rely on me to be their strength. I hear others comment how strong I am and have been. They cannot believe how I have kept it together through everything, while remaining so tough. They comment how they could never be so strong. They would have just given up and fallen apart. Yet, what else am I to do? I am a rope. I have no other choice, but to be strong.

Was I built this strong? Have I become like this over time, as each new experience and challenge adds one more layer, another strand, making me stronger and stronger? Maybe I have always had this incredible strength, but never knew it until I faced my breaking point, until I was just about to snap?

Time and time again, no matter what I face, I continue to hold on, never letting go. I refuse to break. Yet, I am still afraid I will one-day fall apart, that I will snap. I worry I will lose my strength, and that I won’t be able to hold on any longer.   Even worse, I fear that slowly and painfully my strands will completely unravel and that I will be gone. I am haunted by the thought that I will watch myself unravel that way, and yet, will have no control or ability to make myself strong again. I do not want to just rot away, left alone and forgotten, realizing that I completely lost that strength, which had once so impressed and inspired others.

I suppose in the end, one day every rope will become too worn, lose its might, or just snap. We were not built to last forever anyway. For now, I will just appreciate the strength I have everyday. I will cherish all the other ropes, which are here by my side, adding to my strength. I will continue to serve my purpose in aiding others, who may not be so strong and need my power to help them achieve their goals. That is all I can do. After all, I am just a rope.

 

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…

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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

 

Helpful Resources and Information I Wish I Had When First Diagnosed

I intend to update this post constantly, as I am always coming across new and helpful resources.  I believe they can be utilized regardless of whether you are newly diagnosed, or a long-time member of the cancer club. 

This is in no way an exhaustive list, but these are some valuable websites and organizations I personally connected to.  I also don’t claim to be any type of expert!  You have to do what is right for you.  So, I have included some of my personal advice based on my experiences and those I’ve met along the way.  

One invaluable piece of advice I have heard over and over again, as well as advice I’ve given:  DO NOT GOOGLE!  Don’t get me wrong – it’s hard not to in our digital age.   Try your best to avoid the overwhelming urge to search out your symptoms, diagnosis, etc. on chats or less-than-established websites.  I have heard horror stories of patients googling one symptom, or one treatment option, and becoming convinced they will die in the matter of months.  I’ve also heard countless patients tell me that they entered an online chat on some random site only to feel helpless and more frightened about their diagnosis and/or prognosis.

On the flip side of that though, I have met a number of people, who did their own research on their disease and found cutting-edge treatment options.  That led to numerous conversations with their doctors and in some cases, changing doctors/hospitals after weighing all the options.  Again, do what is right for you.    

Overall though, I’d recommend focusing on sites such as:  American Cancer Society (cancer.org); National Cancer Institute (cancer.gov); Association of Cancer Online Resources (acor.org); and, the Mayo Clinic (MayoClinic.com).  They are the experts – not us.

For brain cancer-related sites, I rely on the National Brain Tumor Society (braintumor.org).  Disclaimer: I am heavily involved in NBTS, so I am admittedly biased.  Some other brain tumor organizations people have found helpful are:  American Brain Tumor Association (abta.org/) and Voices Against Brain Cancer (voicesagainstbraincancer.org/). 

I also found my hospital’s website, as well as their social workers, key resources.  Again, I am extremely biased towards my hospital (I wouldn’t go anywhere else), so I won’t include their specific link.  Although, despite how incredible my doctors and hospital are, I found that I had to be the one to reach out for these resources.  So, be proactive.  Seek out social workers.  Ask them for information and helpful sites, organizations, publications…  Be your own advocate.  It’s incredibly challenging, especially early on in your diagnosis.  Don’t you have enough to worry about?  I strongly believe it benefits in the end though.

I have mixed feelings about support groups.  They work for some people.  They don’t work for others.  My advice: Ask questions.  Find out as many details as you can about the group(s).  Weigh the options.  Are you open, or ready, to seek support from other patients/survivors?  For me, I was frightened to hear other people’s stories.  What if it made me feel even worse about this whole roller coaster, and more specifically, scare the hell out of me?  Would there be people there at the end of their battle, truly facing the worst, i.e. dying?  In the end though, the support group I joined helped me feel less crazy (Like, wow, other people have these crazy thoughts too?) and I connected with some really incredible people.  Specifically, I joined a group through Cancer Care (cancercare.org), and found them to be a good fit for me personally. 

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), Cancer Care provides a fantastic program, Healing With Words.  They describe it as “an online therapeutic writing group… The group will be a space to respond to writing prompts, share work, and participate in discussion surrounding the writing process itself.”  I absolutely loved participating in this group and many of the articles and pieces I included under this category were provided by the social worker moderator.

Additionally, one particular organization I cannot say enough amazing things about is First Descents (firstdescents.org/).  I really don’t even know how to put into words what First Descents gave to me.  So, I’ll let their site best summarize what they do, in the technical sense.

“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same….Each program is limited to 15 participants, ensuring individualized care, medical attention and an intimate experience with fellow survivors. First Descents programs are available to young adults with cancer regardless of their financial means. All meals, accommodations and program activities are provided free of charge, including travel scholarships, when needed.”

“At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family. These are the moments that define First Descents and the paradigms our programs seek.”      

Through First Descents, I spent one week with 9 other cancer survivors kayaking through the whitewater rapids of Oregon’s Rouge River.  These 9 people are now my FD family, and I don’t say that lightly.  I do not know where I would be without them, and without my FD experience.  The program challenged me physically, emotionally and mentally.  I absolutely came out of that week a better and stronger person. 

As a side note, I almost did not make my trip.  I was scheduled for my program in mid-August.  I learned of my recurrence in June, and underwent my 2nd brain surgery on June 30th.  I then began IV Avastin infusions and one week of intense, high-dose radiation.  Through every single step of the process, I feared I would have to cancel my trip.  However, through my oncologist’s tireless fight, all of my treatment was scheduled around my FD program, and I was thankfully approved to participate.  My FD experience was truly life-changing, and I will forever love my doctors for giving me that gift. 

On another side note, I will probably dedicate a number of posts to FD and what I gained from my experience. 

Basically, if you have the opportunity, apply for an FD program, like now!!!

                  

“The Things I Wish I Were Told When I Was Diagnosed With Cancer”

This is a piece, which I continue to come back to since cancer entered my life.  If I only knew these things when I was initially diagnosed…

The Things I Wish I Were Told When I Was Diagnosed With Cancer

By: Jeff Tomczek

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

 

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

“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.