Cancer and the Visitors

Why Make the Trip?

I have been wrestling with myself these past few weeks. Seeing my neighbors in the surrounding areas beaten down and in need of aid with the recent floods, I hate feeling like I can not do anything. As I have been sick lately I know I would be useless demoing a house or picking up. I've had to weigh the damage mold and other things would do to me and decide if it is worth it to help those in need. I've offered prayers and sent donations but I still feel trapped by my health, especially since I know how important taking the time to go, to visit can be to others in need.

There is great power in taking the time to visit others. The kings of old would send emissaries for routine word and ambassadors when a note would not do. However if a king took the time to visit another kingdom, it mean something was about to go down. Kings would only leave their kingdoms under largely qualifying circumstances, usually for a unifying marriage or a declaration of war.

Even in stories, histories and the Bible, visits are often the precursor of something greater to happen. God sent archangels to visit many in the bible when things got serious or were to get serious. Could you imagine how the story would have played out if a young Mary had just found notes lying around saying, "By the way, you are going to have a baby." No, instead God send the angel Raphael to personally visit this humble young girl, because in that visit the announcement of a savior was given and the angel was there to comfort a frightened young woman. This then gives her the strength and courage to go visit her cousin whom is also with child.  The idea of visitations are so important that Jesus mentions it twice in the same verse as one of the virtues of entering the Kingdom of Heaven, "I was sick and you visited me, in prison and you came to me." Visiting is a serious thing!

Leave Me Alone to Die

When I first started treatments I prepared myself for the hair falling out, the getting sick and so one. My first round came and went, nothing happened. So here I am living in Texas with not much to do because we are stuck for over a month. My best friend, Josh travels from Dallas to my home town where I am staying with my grandparents to visit and we talked, laughed, joked, and pretty much acted normal except with my CVC it was too hot to go do anything. His visit lifted my spirits a lot. A reminder that I am with only my dad and Tara and I have only been married 6 months by this point and she is staying at home to keep her job. Other than Josh's visit my only other means to talking to most, is Facebook and minimal texting. Tara and I talk every chance we get but I was never one to enjoy talking on the phone.

I am in good spirits by this point and I am about to go in for round to, a little hair has fallen out but nothing too bad and no sickness. First day of second round, I feel nothing but I am back in the hospital and hotel. Which means my father and I become more isolated from others with the only relief is that a long weekend Tara and my mother are traveling up together to meet. My good friend whom has moved to Houston, Lauren and I chat on Facebook and since I am in such a decent mood I agree to her coming to visit toward the end of my cycle before heading home.

The next day of treatment begins and it hits me like a supernova, I feel sick, my skin almost instantly loses it's color and I can't taste anything which makes food unbearable. I just wanted to be left lone.

What makes all this worse, is this is the day Tara is supposed to get there. I was taken in early and they were late due to traffic so I am already miserable by the time she arrives. I was falling apart and I didn't want my beautiful young wife to see me like this. But she loves me no less and helps me accept it.

By the fourth day I am even worse, I am mostly in tears because of the frustration or it all and I can barely stay awake, the chemo is beating me down. Lauren sends me a message to see where we are going to be and I had the phone to Tara. I didn't want to see Lauren or anyone, I was losing myself and I wanted to just be alone to crumble. After arguing with Tara she goes against my angst and tells Lauren where we are headed to start my next treatment. By this point I am preparing myself to lose another friend over my cancer. We are waiting to go into a treatment room, and Lauren come out the elevator and something happens.

She doesn't hug me at first, she grabs my hand while I am sitting down and just says, "Heya friend!" and she is just there smiling at me. I am infected with her smile, she has one of the best smiles, it's impossible to not to smile back (seriously if you ever meet her, try it). My apprehension falls away and I work up enough energy to hug her gently. I realize I wasn't worried about looking awful or being sick, I was scared that I would be seen differently. There was no pity in her voice, no sorrow in her eyes, she was just my same bubbly friend that still loves me even at my weakest, 

Lauren's visit is actually how I credit being able to be so open about my cancer expedition, I know that those of you reading this that truly know me aren't feeling sorry for me but you are all supporting me and for that I am forever grateful.

Love is an Open Door

Since then I have been very open about letting people stop by. I never turned anyone away, I may have fallen asleep on quite a few people thought, sorry. Everyone that has ever stopped by I hold dear to my journey. When I returned home other friends would stop by on my in between weeks and made things all better to not be alone when in my head being alone was what I should have been doing. However the heart needed the visitors, from Amy unable to stop being a nurse and laughing at me as always, to playing Mass Effect 2 with Fr. Beau and just talking about science fiction to take my mind off my pain, my friends Jenny and Buddy bringing their children by after my amputation, which eased my fear of kids being afraid of my one leggedness. Even during my recent treatment, my friend Kristin coming by in Hospital, some of the best alumni a teacher could ask for having "gaming days" at the house, and even friends of my parents, clergy of other Christian denominations and people I barely knew just stopping by my hospital bed to pray with me.

Each of those visits were the highlights to my treatments, they brought peace in a time of great despair and I will cherish each of them, always. 

My visitors are my reason to smile.

Cancer and the Gardener from the Shire

The Proper Noun

Humans have been telling stories since the dawn of time and it is only natural we would want our lives to reflect the best parts of the stories we are told. This idea tends to cause people to genre their lives. You are living an adventure, experiencing a tragedy, enjoying a comedy, and so on.

When it comes to a chronic illness or looming disease, I find it interesting how those ideas of genre change. We say, "their cancer journey, his battle with MS, her struggle with depression" and we usually say it somberly as if we are hoping it is a secret even to the person experiencing it.Truthfully, at times it could be a secret to the ones suffering.

When I was diagnosed with cancer initially all I could think was, "This is now my life." I never thought I was going on a journey or some daring adventure but sometimes it turns out that way.

I love high fantasy so at times I am glad to think of my life with cancer as my adventure or even my quest. Good conflict in any story does less to hold the protagonist back and more to move them forward.

The Unwavering Companion

Ever journey has it's, fellowship if you will, of characters who are there for the main character. Some of these are only temporary and some are more permanent fixtures.

The same is true when going through cancer. You have people that are there for all of your burdens, there for just moments at a time but create strong bonds, and sadly those you have to leave behind. All these people mean something to your journey, even if it is just a little push you need that day.

During my first quest, my constant companion was my father. When I was first diagnosed, Tara and I had just gotten married a few months before the diagnosis and we had closed on our house mere days before I was to hear the words, "You have cancer." Tara was contracted out at the time and could not take leave to help me. Then things got worse, the company would not be renewing her contract and she was to lose her job. I of course couldn't work because not only was I going to Houston for one week, every two weeks; but the chemo was kicking my down hard.

My father was the Samwise to my Frodo, with me since the beginning. After my case was reviewed he and I set out on the first of many trips, just to get the results. In our minds, we would go to MD Anderson, they would give us their plan to bring home, I would do chemo at home and I would get better. We drive 5 hours, stopping only to use the bathroom, no food breaks straight to the doctor appointment. My oncologist delivered the blow that I was in a more difficult position than I hoped and the type of chemo I was to receive was so severe that only MD Anderson could do it because others had died on the same regimen.  I called Tara and we both hurt. I told her I would be home the next day after we stayed in Texas for the night. I sat in the passenger's seat to cry and feel sorry for myself  and feel asleep almost immediately. 

When I woke up to my dad getting off the interstate by my grandparents, I looked up to realize we were nowhere near their home, instead we were two hours in the opposite direction headed back to Covington. My dad knew I really wanted to be home but had just planned on staying so he could rest. My faithful companion and hero ended up driving what ended up being 13 hours that day because of construction with only a Snickers and a Dr. Pepper as nourishment. His selflessness helped me face Tara in a state of mind that wasn't totally broken and I knew with him by my side I could more easily face what lie ahead.

So every two week we left strong together and came back both falling apart. We laughed together, prayed together, got tired of each other, enjoyed bonding when I was able, and got frustrated over the desire to go home together. I learned from this experience that when a child suffers, not matter how old they may be, their parents suffer right along side of them. I saw how each time a child is sick their parent would do anything to take that pain on for them. I know how broken and beaten down I got, somehow my father found the strength to carry me that last leg home.

A Child's Heart of Thanksgiving

I am so grateful to my father for being my companion on my first quest. I love my dad for being so brave all my life. The man that carried me to bed as a child, then carried me again then I could barely move on my own. The man that helped me take my first steps as a toddler and then helped me take my first steps all over again when I was learning to walk with a prosthetic. The man who fought with the baby in the high chair to get food in my mouth, then fought with me to get me to eat anything in a lonely hotel room when my body just wouldn't take anything in.

I hope both my parents know how grateful I am for their love. For fighting by Tara and my side every step. I love them through the downs, through the triumphs and through the frustrations. God blessed me with wonderful parents and family.

Cancer and the Happiest Place on Earth

I Had Fun Never

Everyone needs to collectively feel sorry for me for a moment. Not because of cancer, but because my parents never took us to Disney World as children. The horror!

In seriousness, Disney World would be one of the last places my parents would have taken us as there were many factors that attributed to our lack of Mickey visits. My father is not the most patient person, thinking of him waiting to ride something like Tea Cups, well I can just picture him slowly losing his temper. My mother developed vertigo later in our lives, so rides were a no-no. We never had a lot of extra money as kids, which didn’t mean we never went on vacation, we did. But the biggest reason we never saved up to go to Disney World in my family as a child is, I WAS THE BIGGEST CHICKEN WHEN IT CAME TO RIDES AND MASCOT CHARACTERS.

Seriously, I had this fear since I was very small about rides coming unhinged and killing everyone while I was on board. I was the reason “child swap” was invented at theme parks. I have vivid memories of my parents convincing me to go on the kiddie coaster at Six Flags Fiesta Texas when I was little and having a panic attack. Don’t even get me started on carnival rides. I also had this fear of people in costumes that didn’t go away until high school when I was forced to cooperate with our school mascot for various events, and let me tell you a flamboyant Skipper is so much creepier than a fighting tiger or a bear.

The fear of rides went into adulthood as the times I tried to let my guard down and try a ride or two, I always ended up regretting it. I went to a Six Flags with a girlfriend and her little brother and I didn’t want to seem too unmanly so I got on a coaster with this, hyperventilating the entire time. That coaster jerked in a way I wasn’t expecting right as I went to enjoy it and the metal hand bar hit me square in the jaw. The next time I went to Six Flags in Dallas with my friend we got stuck at the top of a log ride for over an hour while the workers decided how best to approach getting us down. Their final decision was to just push us by hand and hope for the best. We ended up flipping the log, all hitting our heads on the slide itself while submerged and well just being miserable the rest of the day.

My First Foray in Physical Fantasy

It wasn’t until after I got cancer and had an amputation that I made my first trip to Disney World in Orlando. I had married a Disney fanatic and I was slowly wanting to go even though I told her I don’t ride rides. After my recovery we planned a trip and once I had gotten there, I had every intention of playing it safe and only riding the rides families were getting on.

We rode Jungle Cruise first, and I enjoyed the cheesy jokes and campiness of it. We rode the Magic Carpets and it was hilarious getting shot in the face by a spiting camel. Then we rode Pirates of the Caribbean and something was up. Tara had this grin on her face and I slightly panicked at the rides only short drop. I didn’t like being tricked but it was fun. Tara apologized but promised that we could ride a tame kids ride.

We boarded Peter Pan’s Flight and there was this little ship on a track. As we took off, and we entered the first room, the track breaks off abruptly and I panicked again. “Baby! The track is missing!” Tara pointed up and I had been fooled by the Disney magic. The track below was a farce while the ride was actually suspended in the air.  The Peter Pan song “You can fly!” picked up as the ship sailed on in flight and my heart melted. Suddenly I was a believer in the magic of Disney. I wanted to ride it again as soon as it came to an end.

Our next stop was the Philharmagic and I was so full of emotion when it was over I was ready to do more, after I wiped my face from the mist they spray, Fine! Tears of pure joy. I realized then that a little bit of magic can go a long way. I lost my fears of characters and rides. Suddenly I would ride anything and I absolutely loved it. I came to the realization through the joy of making these memories that if I wasn’t going to fear dying of cancer, I wasn’t going to fear a silly ride, I was going to enjoy my life. Now I’ll ride anything except Tower of Terror but that’s more a motion sickness thing than a fear.

I Still Carry the Magic

Since this trip we have been multiple times and will continue to go multiple times as it is our favorite place to visit. Disney World isn't just a place we go and enjoy, it is a magical kingdom where we make wonderful memories. Of course there are other places I’d like to visit but being disabled, doesn’t always make that possible. We've tried and often faced disappointment with other locations. Tara and I are often criticized for our love of going to Disney World but let me ask you this. If given the choice of an inexpensive trip where you know you can do everything even with your limitations or a trip just a little more expensive where you may be limited on what you can do because of disability, which do you pick? For us it is a no brainer. So critics can bite me because they don't call it "the happiest place on earth" for nothing.

On that first trip I came to realize that our lives need a little spark of magic to carry everywhere with us. “Now wait,” I hear some saying, “Don’t you believe in God? Isn’t faith enough?” And the short answer is “Yes” but faith in God isn’t the same as believing magic in your life, and if you treat your faith as a magical wish fulfilling entity, you are not getting what faith is all about.  Think of faith as grace and hope and the magic you believe in as the mechanism that tells your brain how to hold on to that hope and grace.

As a cancer survivor I have faith that all is going to go according to a divine plan but I believe that is going to be whatever God wills and the hard part is accepting it without fully understanding it. The magic and memories a place like Disney World gives me is the other side of that same coin as it gives me the motivation to accept the day to day. It gives me joyous memories that I can hold on to when the times get really tough. Where faith is very spiritual, the magic is very emotional.

The magic in your life can come from anywhere. For me, as of now, I still buy into Disney magic as I allow it to stir my emotions. I get giddy when Tara and I plan trips, we talk fondly of the memories we’ve made there, and we get emotional over silly things when we are there but that is OK. Hold on to believing life has magic to offer you. Hold on to being childlike. You never know when magic will keep you going just a little further than you thought you would.

Plus, magic is always better when you are already sharing it with your princess.

Cancer and the Priorities of a First Year Gryffindor

The Script of Discomfort

Let’s face it, as common as it has become, cancer makes people uncomfortable. Over the years I’ve heard every message of goodwill and story of someone else’s miracle simply because no one knows what to say. Even as a survivor, I wouldn’t know what to say to another except to be there even in silence. Sadly in our culture silence is just as uncomfortable as the disease itself so people fill the silence with hopeful sounding buffer phrases like, “You are so strong,” or “Once this is over you are going to feel so much better.” Then again anyone who has gone through a life changing trauma rarely ever feels like any of these statements are true. This script people follow, makes it difficult to be honest about how you actually feel, so you end up just agreeing to move the conversation along.

The coup de grace buffer phrase people love to use most is, “At least you have your life.” For so many survivors and patients, nothing can be farther from the truth. The problem is people confusing living with existing regularly. Living is going about life in a forward manner; existing is the ability to breathe and go through each day until you sleep again. Often survivors can feel like they are just existing because even if they are cancer free so much from the experience and treatments lingers into years and years of their lives, and then there is the constant fear of recurrence.

Of course it is not usual for a survivor to admit this because then everyone wants to evaluate their mental health and put them on suicide watch. Know there is a possibility to consider your death without thinking of taking your own life, it’s really just owning up to your personal mortality. Survivors often are left with a gap in their lives that often make survivorship feel worse than we expect death to. An example I often go to on this is a cleverly written line from J.K Rolling delivered by 11 year old Hermione Granger.

Hermione's Priorities

In the first Harry Potter novel, Hermione Granger rebukes Harry and Ron with the line, “I hope you're pleased with yourselves. We could all have been killed — or worse, expelled. Now if you don't mind, I'm going to bed.” to which Ron Weasley retorts, “She needs to sort out her priorities.”

What is meant to be a bit of comic relief about Hermione’s studious characteristics, shines light on the priorities of those with and without magic.

Ron Weasley has grown up in a magical family his entire life. It surrounds him and is always a part of his day to day even if he is not the one casting the spells. We can assume from Hagrid’s backstory that expulsion from Hogwarts School of Witchcraft and Wizardry does not mean an end to magic in the life of those students, except the extent of what is learned in a classroom setting. If Ron had been expelled his first year, he would have moved home where magic is still prevalent. Then after coming of age under the rules set forth by The Ministry of Magic, he would have picked up new spells from his family (we can’t rule out the idea of magical homeschooling) and he would have gone about his magic filled life without a proper education.

Hermione Granger is a regular kid with no magical parents. In fact they are worse than non-magical, they are dentists. Hermione’s life drastically changed the day an owl delivered her Hogwarts acceptance letter to their rather mundane home. This normal child whom only dreamed of a world full of magical things learns that her dreams are real and she will do anything to hold on to this version of reality.

Hermione tries very hard not just because she wants to be a Straight-A Student (do they use grades in Hogwarts?), but because she does not want to lose this connection to the magical world. This is why she perceives death far lighter than being expelled. Imagine being a normal kid, then learning about this incredible side of the world you couldn’t even dream of, then having it taken from you. Once death has come there is nothing more to worry about, and in Hermione’s case losing magic and having this deep void in her is a fate worse than death.

If Hermione is sent home, she is disconnected completely. No one in her home life is a magical being, she would t never be taught anything more and go about her mundane life into adulthood. Without having that connection, who is to say she would find her way into the magical world knowing very little magic from her childhood.

The Muggle Survivor.

True the real world doesn’t have magic and magical creatures that leave that emptiness but a true student and thinker will learn to miss all they had still going for them if they had not been expelled. Kids in high school often question why adults want to talk to them about college or share past experiences. The truth is, often those were the best times for all of us. We were closest to our friends with a certain degree of freedom not found in adulthood, we were learning at our best and we had hope of what was to come for us, and we see that hope renewed in the younger generation. And just like the generation before us tried to get us to appreciate it, we will do the same, as will they when their time comes. Adulthood, brings with it a gap you don't have in school, it could be how much time you spend with friends, how much hope you have, or how much you just enjoyed learning new things.

In this same way, survivors live with this gap in their lives that nothing seems to fill. Cancer creates a gap of a time, "before I was sick". It can form a gap with it's many side effects survivors must now live with. Much like Hermione, we long to hold on to the reality we once had before we ever thought cancer would be a part of our life. This is why sometimes when a survivor reflects upon their life, we see a time when our life was more than fighting everyday just to make it through to the next. While we don't necessarily want to die, there is a time when the human spirit can only take so much suffering and you just wish there was a way to forget it all at once, even for a moment. Viewers from the outside thing this way of thinking is dark or hopeless, but realistically it is just the brains way of giving the body momentary comfort.

In my personal life, making the most out of the moments I can forget about being sick, and the myriad of side effects are the moments I am alive. The best moments are the ones you are truly free, even free from just existing, you have achieved something beyond that, a great moment in life, even if it is just a distraction. Distraction is the best medicine as it also comes with the added benefit of creating memories with the people you love, memories in which you will live on long after you are gone and even long after they are gone if you are lucky.