My First “Tuesday Trickles” Challenge – Inner Peace

I just found a wonderful blog,  https://acookingpotandtwistedtales.com/join-the-challenge/ that presents a “Tuesday Trickles” Challenge.  Every Tuesday, Jacqueline Oby-Ikochacan opens her blog up to other writers to “share your very short snippets of positive, inspiring, motivating, health, spiritual, writing advice, clips, posts etc.”  I love this idea!

Today is my first “Tuesday Trickles” Challenge.

I woke up this morning reading an article from Deepak Chopra entitled “4 Ways to Create and Maintain Inner Peace.”  All of the 4 lessons deeply spoke to me, but the last lesson particularly inspired me today.  Deepak teaches that we should expand our experience of peace every day.  We need to stop wasting valuable energy on anger, resentment, insecurity and “baggage” created by our own ego.  Instead, use that energy for love, inner growth, creativity, and so forth.

While these words and ideas may not be my own, I am going to apply them today and hopefully going forward, every day.

I will go out into the world and fully embrace my inner self, my inner peace.  I truly do NOT have the energy for anger or negativity.  My inner peace will shine and by sending out that positive energy, it will be felt by others.  Not only will I benefit from this, but others will as well.

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Thank you, Jacqueline, for this Challenge.  I hope to participate in many more.

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“Everything Happens for a Reason” and the Judgment Zone

Throughout the last two years of living with the big “C” and delving into the big “C” world, I’ve met countless other survivors.  I’ve joined several support groups.  I’ve become heavily involved in various cancer charities.  Now, I’m blogging and finding other bloggers opening up about their big “C” lives.  Basically, from the moment of my diagnosis, I pushed myself right through the cancer club door, no questions asked.  I anointed myself a member of a club I never wanted to be a member of, and obviously, I never expected to be a member of.

Within this cancer club sphere, a topic that constantly comes up is the notion that “everything happens for a reason.”  I’ve seen that the reactions to this phrase run the full gamut –  we either embrace it unwaveringly, or it makes us want to punch people in the face.  (See below – this is a card I actually received from one of my favorite snarkiest friends)

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[DISCLAIMER: This is a “judgment free zone.”  I never judge any cancer survivor’s reactions, feelings, etc. to their situation.  Our cancer is our cancer and no two are the same.  While I may personally feel different from others, and I may embrace my experiences in certain ways, neither is right or wrong.]

So, for me, I do in fact believe that things happen for a reason.  After seriously contemplating life and death, and facing a potentially terminal disease, not to mention 3 complex brain surgeries, you can’t help but think, “What does all this mean?”

I was not always a very positive person throughout my life.  I was very cynical, even at a young age, and many times unhappy, really for no legitimate reason.  I frankly had a fantastic life.  Who knows where all that came from?  However, immediately after my diagnosis, everything changed.

I never got angry.  I never questioned, “Why me?”  Did I make jokes about how insane it was that a perfectly healthy person, who had never even been admitted into a hospital before, wound up with one of the most serious conditions you can get?  Hell yeah I did.  Some of the typical phrases I used were, “I can’t do anything simply.” or “Go big or go home.”  Every time I was asked about previous medical conditions, my standard reply was, “Nope.  Just brain cancer.”  My tumor is also so rare that my husband loves to say, “I always knew you were one in a million.”  (turns out I’m even more than one in a million, as approximately only 72 adults are diagnosed in the U.S. every year with my specific type and with all my factors.. yay me!)

I took on an unwavering positive attitude that I was going to beat this no matter what, and despite whether the end would come quickly or years and years from now, I would fight every single solitary day.  I would never ever give up.

[SECOND DISCLAIMER:  Another “hot topic” is the use of battle/war phrases to describe our cancer experiences.  There is a school of thought out there that by using those terms “fight” and “giving up” it implies that those we’ve lost didn’t fight enough, or did give up.  In no way do I believe that!!!]

So, I decided that Yes, this did happen for a reason.  I came to grips with the fact that I very likely would never know that reason.  I believe in God, and I do believe that throughout my life, every stage and every step has led to the here and now.  While I am here, continuing to breathe, continuing to get up out of bed every day and face this, there is a reason.  I mean, if there isn’t, then that REALLY sucks! All of this for nothin’????

So, while I harbor no ill will or judge those who feel differently, I don’t always feel that sentiment returned.  I have actually had relatively confrontational exchanges with survivors who do not in any way see that there is a reason for this.  In a circular-type argument though, those survivors tell me they have felt judged because they don’t embrace the notion “it happened for a reason.”  Yet, in the same breath, they roll their eyes and make slightly nasty comments towards people like me who actually do feel there’s a reason.  Hence, they’re sitting there complaining about being judged, as they’re looking me in the face judging me.

Again, I feel the way I feel.  It’s my coping mechanism.  So, along with that, I tend to distance myself from those who I feel judge my way of thinking/coping.  I understand how they feel.  Cancer is awful.  It’s bullshit.  It can kill us!!!  However, if I’m going to walk along this Earth, for however long that may be, I’m going to continue embracing every moment and believe that Yes, there is a reason.

God gives us only what we can handle.  Apparently, God thinks I’m a bad ass!

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