Cancer Hates Oxygen: Kids in the Hall

Cancer Hates Oxygen: Kids in the Hall: "Today was a long walk down a short hall. Today, I visited the long-term survivor’s clinic called The Tomorrow Fund. Don’t ask ..."

Kids in the Hall

Today was a long walk down a short hall. Today, I visited the long-term survivor’s clinic called The Tomorrow Fund. Don’t ask me what the ‘fund’ part stands for in clinical terms.

There I was standing in the new clinic. I propped myself against a wooden railing and waited my turn at the front desk. I expected a long process. What I wasn’t expecting was the sudden rush of memories.

Gone were the soft yellows and taped tigers that dotted the walls surrounding me. Pictures of sea turtles, and birds, along with supple chairs set to a soft green hue all vanished. The hardwood flooring evaporated and moldy, gray patterned Formica took its place. Carefully laid dropped ceilings twisted into asbestos covered rusted piping and the yielding warm glow of nested CFLs transformed into laser-bright incandescence tubes.

Off-blue vinyl with fake wooden legs took up more room than needed. The Playstation mirage faded into a stack of aged Highlights with all of the workbook sections answered. Worst of all, the sweet smell of cut flowers was supplanted by the acrid perfume of sinus burning alcohol that often announced the arrival of pain.

I was back in the original clinic. Back where the nightmares began. Dank and cold even in the summer. Dusty and rank with sickness in the winter.

One thing didn’t change at all however. The children were the same.

Three, five, seven years of age. All struggling to sustain their childhood energy, taken for granted by millions of non-afflicted children. One little girl played with a Justin Bieber doll that kept snagging on the IV that protruded from her tiny arm. In a fit of dark comedy, the doll’s hair was thicker and fuller than her Raggedy Ann tresses that fought to regain what once was a full head of hair. Her father watched on but I could tell he was elsewhere. Hell, I wanted to be elsewhere. He woke from his stupor only when the little girl demanded it.

A mother, followed by a doting father and a grandmother who made herself up no matter what the destination, carried another bald boy in. His large blew eyes and simple blond strands took in the whole room and rested on me – the oddity in a room of oddities. I harkened back to my parents and wondered if they had the same countenance as those sitting beside me. It’s the look of worry. The look of sleepless nights. The look of hating everything about their situation. The endless search for hope. I don’t remember what my parent’s state of mind was back in those early years but I suspect it was the same visage of desperation.

I was back in the present. The warm hues surrounded me once again. There was no smell of alcohol permeating the air. The children still hustled about with shouts of Iron Man beating the tar out of Spiderman.

A nurse came in and picked me out of the crowd. I got up and waded through the marbles and paper. All eyes were on me fore I didn’t have a toddler in tow. My son was heavy on my mind. He is perfectly healthy and strong. The exhausted faces trailed after me as I left the room. Even the boy playing with the hospital DS Nintendo stopped for a moment to look up. No hair overhung from under his ball cap and his eyes were naked of their brows.

The nurse practitioner took me into a private room and begged forgiveness at being late. She sorted through the mess of paperwork and I took in the photo collage on the wall of children who have passed through this place. I didn’t want to think it but I did. How many of them were still alive?

Here it is - My new routine. More questions. More historical answers. The message being Long Term. The NP judiciously jotted down everything from my supplements, to long-term meds and workout routines to finally “what’s next”.

Still, as I coursed through my banter with my new NP mentor, my mind remained with the kids in the hall. I wanted to stab a flag in the Earth for them all simply stated – I am still here.

Cancer Hates Oxygen: Forever is my time....

Cancer Hates Oxygen: Forever is my time....: "This is an excerpt from my second bout with what I call 'nuclear fallout'. Some have asked what was it like during the diagnosis period. The..."

Forever is my time....

This is an excerpt from my second bout with what I call 'nuclear fallout'. Some have asked what was it like during the diagnosis period. There was no editing. There was no grammar check. This was 'as is'. This is an attempt to encapsulate those very moments when mortality is in full question. *Note - this site that this excerpt was extracted polices harsh language. I am that way so any *** you see, I'll give you license to ad-lib. Here is the beginning... Day 1 Posted May 5, 2009 10:26am For those of you who know me, I've been under medical inspection for over a month or so. Well, today marks the first day of my journey. It's a journey I didn't think I would ever have to do again. As a 6-year-old, I suffered from Hodgkin's Disease. Thirty-six years later a new battle has unfolded. On May 5th, 2009, the preliminary results have been turned in and I have been diagnosed with a sarcoma (cancer) of which my liver is the second place of origin. That is, the liver is not where it has originated from. Where? Good question. Evidence points to gastric or colon cancer as the origin. More tests will prove this out. They, doctors that is, haven't ruled out my previous treatments as a child as the culprit either. Time will tell. I hope I have the patience and mental edge to get through this. This will be my forum of communication to the world. I am a better writer than orator. I wanted to set a few rules before I continue. In no particular order: 1. I am not out to make other people feel good. This is harsh, I know. I should qualify this. You may cry. You may feel bad for me. You may have pity on me. I am not going to go into a stage act to make it better or easier for you. I am pissed. I am beyond angry. The Universe, God, Satan, Mother Earth, whatever, didn't think my family had enough to go through with Pam being a survivor herself. I have a 5 year old I want to see graduate high school, ask for my car, and think of me as a superhero. **** the higher(?) being who wants to rob me of that. So if I appear recluse, angry, sad, or whatever adjective you need to describe my moment, I offer no apologies save this thought - I need you. I need you to understand that I am in a war. It's a personal one and sometimes citizens get hurt. None of the fallout is intentional. 2. I do need you. I am strong. I am sharp. I feel very good actually. I'm probably one of the few cancer patients who can run a 5k, bench 200lbs, get a shut out in hockey (I'm a goalie) and write a **** good story. But I still need you. I need you to make me laugh and see that tears in the rain are just that - invisible. I have enough resolve to go it alone but I don't prefer that. I am asking you, actually begging you, to stick with me. I have wonderful friends, both old and new, and my family is battle tested. The only deal I ask is that you be real with me because I am sure as hell going to give you all of me when I can. Life is too short not to do that. 3. Be normal. Normal is a question of knowing what the moment requires. If I am at work, I expect that we will all go about our duties. If anything I want to be a creature of duty because it is comforting to be in routine. I expect to judge and be judged in my work. I am also an author and I want to be viewed like one. The only way to do that is to write and be heard as an author - not a writer who has cancer. I'm a writer. I'm an author. I won't accept second descriptions. 4. No pity. Don't want it. Don't need it. 5. Prayers, Universal discussions, incantations, good thoughts...do what you need to do. I accept all and travelers cheques as well. I am sure there are more rants coming from me but I am tired. Here's is my promise to my family, friends, enemies and people who walk by me at the mall. - I have many more Christmases (someone help me with a spell check will ya)and Halloweens left in me. Don't you dare count me out. - I'd pit my will against anyone's - any time, any day, any where. I've been told forever that I can't do this or that. I won't be told anymore. - I love you. I might not say it all of the time but I do. More than that, I appreciate you. Always. Never forget it or I'll be forced to remind you. - I look **** good in a t-shirt :) - I had to put that out there, come on, it's funny. This site is simple enough. Sign up if you need to. Share the link with who you feel can benefit. If not, I will talk to you or see you very soon.

Standing by...

It is always well documented among Survivors. The diagnosis. The shock. The crying. The treatments. The pain. The questions. It’s a personal journey that too many take. It’s not a simple test of character. It’s a slamming of the very faith you might have in life itself. That’s when you are on the inside of the game. You are under the microscope, both figuratively and literally. The spotlight is searing. The poking and prodding are maddening. It is a macabre show and you are the unwilling star. But what if you had to watch? What if you had access, twenty-four seven, to one of the worst reality shows every produced? Many know of my often-documented journey from six-year-old Hodgkins patient to scarred adult. Many more don’t know that my wife is a very recent survivor of Non-Hodgkins Lymphoma. A different situation indeed. It was December 2006, almost two and a half years before I had another round to deal with myself. My family was preparing for a usual Friday night dinner out. Pam was in the middle of changing to go out when she noticed her right leg was suddenly swollen. Puffed so much, she couldn’t fit her leg into her regular jeans. We agreed it was time to go to the ER. She travelled herself and I stayed behind to watch The Boy. It’s the very moment of hesitation before the roller coaster plummets. The skip in your heart when the murderer jumps from behind the door. After all of the treatments. After all of the pain. After all of the caring that I had received from countless people with names that I never knew, I was out of place. Pam called me from the ER and the process had started. She was admitted after an MRI showed that a mass was blocking a major vein in her right leg. A mass. She had never spent a day in a hospital in her life and there it was – a mass. In a flood of surrealism, she was subjected to biopsies; scans and the word came back – NHL. From under the microscope to outside the bubble, a new level of pain washes over you. Someone you care about now is the subject. She was now the guinea pig. Radiation was first. Silent. Invisible. Deadly when misused. After effects still unknown to science. Next came the barrage of chemo. I remember when the first hairs began to fall out. The first tears. Pam never flinched. While I fell to pieces with panic, sorrow and pity, she stood her ground. At the time my son was about three years of age – a blessing at the time. She was going to watch him grow up. She refused any other option. She would be tired. Ever so tired as the radiation sucked the energy from her. Her will had stamina, however. Bald, she strapped on her head kerchief or plopped on her cap and went on with life. Our son has very little memory of her ever being sick. Doctor visits dwindled. Scans are now the norm. Clean is a way of life. NHL can be nasty but we have faith. Very recently her doctor made the statement that is more fact than opinion. “You will just have to get used to being healthy.” Watching outside of the bubble is like viewing a person drowning. All you can do, sometimes, is press up against the glass and scream. You can use supportive words. You can work to pay the bills. You can hold them in your arms but in the end, it is they who must learn to swim again. I have survived the disease and I have watched a love one walk through the carnage. I am unsure which is worse.

Cancer Hates Oxygen: Dreams won't let you die inside...

Cancer Hates Oxygen: Dreams won't let you die inside...

Scars

Remember this: your body is your slave; it works for you – Jack Lalanne

My Body tells me no, but I won't quit – Young the Giant

Scars. We all have them. Everything from childhood playground accidents to major surgeries.

I often find myself tracing over them. Remembering how they got there but often just plain wondering how they came to be since I was unconscious for most of them.

My left arm has a ragged mark that zig zags from my wrist to my elbow. They harvested an artery there. I chuckle at myself thinking I could hide it with some obsidian tattoo with bloodied writing stating “Death from above”.

When putting on my hockey pads, I often think about the scar that runs down the length of my thigh. The surgeon was fishing for a good vein as part of my heart bypass all due to my childhood treatments. They basically super glued the wound instead of stitching it – clever.

There’s the scar across my stomach. One of the originals. I am told that nowadays laparoscopic techniques are used instead of some ancient ninja with a katana. Okay I made up that last part.

Then there is the scar that runs down my chest, tied in with the scar that runs down the center of my stomach. One for a heart bypass and the other for the more recent liver resection.

You get the point. This ain’t no beach body. I’ve been trying to figure out a way to wear a turtleneck during the summer months.

Scars are often part of the treatment. Survivors hold them as badges. Wounds you may not see even on a battlefield.

Those are the scars you can see.

What about the disfigurements you can’t see? Those run deeper than fused flesh and bone. They say soldiers often combat the enemy only to combat themselves after the war – Post Traumatic Stress Syndrome.

You wake up screaming from nightmares that stay with you for days stemming from people who woke you up at 2 am to stab your arm. Depression hits at a moment’s notice and sleep may not happen for decades. Sounds like a war doesn’t it? Only there are no bombs save for the ones that may come from your doctor’s office. The alarms from IV units still ring in your ears. And yeah, the shouts of other patients stick with you too. Some morbid funeral march of moaning and groaning that you never get used to.

These are the scars that truly run silent and run deep. After a few decades of ‘the battle’ there is a light. As I’ve stated before, I tab my PTSS eccentricities as ‘my demons’ - Little creatures that you can step on, yet always seem to come back to nip at your heels. When you make your issues into something tangible, you often find yourself managing them. They may never go away but you can defeat them hour to hour if need be.

To that end, I’ve seen many shrinks. I have a Survivor’s Group that I attend every few months where people from all walks of life share vastly different stories yet there is an eerie commonality as well. These are all patches in my life raft. A leak here. A breakage there. A patch. A band-aid. A temporary salve.

Suffice to say, Survivors may battle more than most. Some would argue against this perspective but I just say we all have our own personal tragedy to deal with. Some more than others.

It isn’t the size of the disease but how you handle it. It has taken me over 38 years to figure that out.

Some speak about it. Some bury it. There is no rule book. There is no wrong way to deal with the fallout both literal and figurative.

For me? Outside of the help I’ve asked for over the years, I just do what is normal and therapeutic. If the alarm goes off, particularly after a bad night of sleep, I remind myself that it is my religion to take care of myself. I do think of myself as a soldier. I imagine the strength I build is wearing down pockmark tissue. The air that huff into my lungs is keeping evil cancer cells at bay. The organics I eat fuel a machine ready for any battle.

Still, deep down, I know I have dodged many bullets.

And I have the scars to prove it.