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.

Christmas Magic

I’ll admit it. I am not a holy roller. At the risk of sounding like a Match.com ad, I am spiritual but not religious. If I were given supreme power, and the world would be very frightened of that I am sure, I’d nail all end of year holidays into a true Earth Day. Keep the tree, the cookies, the wine, the songs, the fruitcake and everything that makes your holiday but goodwill shouldn’t be about one religion or creed. It’s for everyone.

That was the long way of saying I don’t usually look forward to people gatherings. My shrink probably would have a name for it but I’m one of those people that dread the family events yet once I get there, I have the time of my life.

This time of year, I always search for the holiday spirit. To pull from every Hallmark card, where is the spirit of Christmas? Where is the magic? It would seem that I haven’t had it since I found out there was no Santa at the young age of seven.

So where is this holiday enchantment so many speak of?

My mom throws a holiday party, open house-ish, every year. Begrudgingly I go every year. This year was particularly painful – The Patriots had a night game on the same night.

There I was. Mingling. Talking to people I don’t see for months at a time, even longer.

The evening was a mixture of wine, food, and friends. I found myself laughing in every conversation.

Therein lies the magic. After the last few events in my life, you start to count the years. How many behind. How many ahead. You start to survey the room. It is with sadness that you can say some will not be there at the next event. You want to freeze everyone just as they are as sort of a sick, life taxidermy.

I have another admission – I am a loner. I like my peace and contemplative quiet. After an evening of raucous conversation, I am wondering if I should reverse that nature. It’s that clamor that makes our lives delightful. We can’t hide under our blackberries from it nor should we. These are the people that nurtured, consoled, and lived with us. Side by side. They are the very fabric of why we exist.

Like most, I am proud of who I am. And like most, there are times that I feel I’ve earned the right to be on my own. To not get involved with family. I’ve done my bit for king and country. I deserve my own island.

It doesn’t work that way. I am not only a part of those around me, but they are all a part of me. A huge part. Family and friends are my blood. They define whom I am no matter how much I yearn to be left alone.

The conversations ended. A crispy dusting of snow crunched under my feet as my family departed my mom’s party.

I did make the Patriots game. Throughout it all, I kept thinking of the faces I spoke with all night. The happy eyes that stared back at me. The memories that were my past that I could taste once again.

Call it nostalgia. Call it reminiscences.

I call it Christmas magic….

Night Sweats...Conclusion by Kim Zuba Morse

"I like to call this the ongoing conclusion. As Kim exemplifies, the point of the story is that it doesn't end. It is the most telling aspect - Survival..." JM

Over the next forty eight hours, I found myself surrounded by an influx of family members, friends, and acquaintances; the front door instantly became a revolving door of curious guests, those sincere in their well wishes, and others who were somehow guilt ridden into seeing ‘the sick kid’ before impending doom. Movies, snacks and small talk filled the hours until I was to be introduced to my new life. Excisional lymph node biopsy was scheduled for Monday morning at the Children’s hospital; this gave me the opportunity of one more weekend to live as a normal teenager; unfortunately there wasn’t anything normal about my situation. How does one prepare to be told they have cancer? It’s a question I often think of now.

The vacancy in my parents’ eyes didn’t go without notice. Boisterous and outspoken qualities that I had learned to treasure were replaced with silent fear. Years later, I realize that they had done their research as well, and were preparing a united front into accepting a potentially terminal diagnosis for their oldest child.

The operating room is not an inviting place. The surroundings are cold and metallic, sterile; yes I guess they have to be when dealing with life or death. Instantly a chill took over my body and it became unstoppable. My normally soft skin replaced with a slew of goose- bumps peeking through the fashionable hospital garb including slippers and a net cap. Anesthesia is introduced and a burning sensation causes me to yelp in discomfort at the needle stick and then I am able to relax. I’m instructed to begin counting backwards: five, four, three, two, one………

I fully awaken two days later into a world wind of developments. A disheveled body is asleep on an uncomfortable makeshift bed. My eyesight adjusts and my father’s features become clearer. He has aged in days. Minutes later my mother arrived, her facial features drawn, dark circles under her eyes, and the remnants of a good cry; she carried a cup of coffee for each of them. I quickly noticed their eyes lock into a stare and suddenly words weren’t necessary. “I guess we need to talk, huh?”

Seconds pass and a nurse arrives to check my vital signs. I realize that I am weak, a few days without sufficient nutritional intake, and I need assistance to stand to go to the bathroom. “Damn” I yell as I’m cursed with nature’s monthly gift to women; how embarrassing. Teenager… Hospitalized… Menstrual cycle… No privacy. Could it get worse?

A handsome young doctor enters my room on the sixth floor of the hospital. He puts out his hand to introduce himself; he is a new face to me, but not to my parents. Their paths had crossed.

“I’d like to talk to you about your biopsy results. During the initial procedure, we also did a bone marrow biopsy and I’m sorry to tell you that you have a type of cancer known as Hodgkin’s Lymphoma”. Pause. My mouth opens slowly as my brain registers what he has just told me. “Get the hell out of my room, now”. He quietly steps out and my father follows him. I hear “I’m sorry” again. Sorry doesn’t cut it.

I asked my mother for paper and a pen and I quickly put it to use. How long until I die? Will my hair fall out? Is there treatment and will I feel sick? Can I go back to school? And finally, why me? I didn’t smoke, hadn’t tried drugs, and maybe took a few sips of alcohol at a family party, but that was it. How was I chosen? In fact, how is anyone chosen? Being diagnosed with cancer at any age is traumatizing. It is especially so during the teenage years when vanity is in and hair loss and bloating due to legal steroid use is not.

Luckily for me, I was able to be discharged home after a short four day hospital stay. I was instructed to rest in preparation for further testing which would determine how extensive my cancer was and what treatment protocol I would be assigned. So much for going back to school in time for the spring dance and biology midterm; bring on the wigs and bandana and so long to the formal wear.

Within a week, the handsome doctor who I had not so nicely kicked out of my room was once again delivering news. The symptoms I had been experiencing for months, and thought to be related to ‘just’ a viral syndrome, were actually tell tale signs of a potentially life threatening disease. Hodgkin’s Lymphoma can present with classic systemic symptoms of fever, night sweats and weight loss. I had all three. Although causes are unknown, Epstein Bar virus may play a role in this malignant disease of lymphoid tissue. Yup, I had that too. Initial staging of disease is critical to therapy, which is why every part of my body was scanned; searching for cancer anywhere it could hide was the mission of my new doctor and soon to be friend. Deep within my chest a tumor grew to be the size of a grapefruit over the course of the preceding months. It wasn’t palpable, but it was slowly trying to give me a clue to its existence. The problem was I wasn’t listening. Despite losing some weight, I was still on the heavier side. The shortness of breath from the tumor was mistaken for the result of too many French fries and an extra serving of ice cream. The specialists had met and reviewed my case at Tumor Board, an interdisciplinary group made up of the best and brightest medicine has to offer. My disease was classified as Stage IIIB. Chemotherapy and Radiation were now planned for the next 8-9 months. Was I prepared? Attempting to sleep that night was impossible; I could only hear one word over and over in my dreams. Fight.

Night Sweats...Part One by Kim Zuba Morse

The clock strikes two in the morning and the bed sheets are soaked yet again. Four times in the last week and almost robotically I’ve found myself in a new routine: school, homework, dinner and soon after asleep on the couch. Unfortunately, the rest is short lived. Bed soaking, body shaking sweats awaken me within hours as the devil dances through my dreams shouting “put up a fight”. Even 17 years later the thought of those sweats turn my stomach and result in an immediate chill.

At fourteen years old, many teenagers think they know it all. Sorry to disappoint, but I was no exception. I wasn’t a cool kid by any means, but I had made some friends, proven myself academically, and was living the good life. I felt the knowledge I had about me was far superior to that of any doctor I had encountered in the preceding months.

Days of absence and early dismissal began tarnishing my near perfect academic record: I was sick again. Repetitive visits to the pediatrician continually resulted in the same diagnosis: Enough of the damn viral syndrome. Five visits later I begged, yes pleaded for confirmation via blood work. My reward? Epstein Bar Virus was detected. As quickly as the needle poked through my skin to get at my tarnished blood, the hand that did so wrote me a “free pass” to be eliminated from further humiliating myself in high school co-ed gym class. Friends were envious. No more ugly gym shorts and uncoordinated attempts at being athletic.

Fast forward three weeks. Friday April 19^th; the date is permanently engraved in my brain. It’s two am, the sheets are soaked, I get up to change my clothes, and as I pull my wet shirt off, something is different. My fingers start to move around my neck, slowly at first, and then quickly my speed changes to fast forward. A new development in hours, how could that be? Yes, the mirror doesn’t lie. Inhale. Exhale. As my brain is telling me to look at myself more closely in the mirror, my heart is speaking louder “yes, finally, a visual clue”. A hard mass, the size of an egg, was embedded into the left side of my neck and I silently knew my fight was about to begin.

I’m pretty good at pretending things are okay, even when they aren’t. Such is the case that morning, as I carefully chose a turtleneck to wear and asked my grandmother if I could be excused from school, after of course, my parents had left for work. An hour later she kindly escorted me to the primary care doctor for the last visit of that kind. The words are still clear in my mind to this day: “call her parents out of work immediately”. As my grandmother excused herself to do as she was instructed, it was my turn to face him and vocalize the thoughts that lingered in my mind and heart all along: “I have cancer”. As his eyes filled with tears, he looked defeated. In his Russian accent he managed to confirm my prediction and validate my fear. “It is highly likely that you do”. Even at fourteen, I was able to get the last words in: “That is between you and I until we know it is a sure thing. Don’t worry; I’ve got a good fight in me”.

And so the story begins.

Thanksgiving

Everyday I wake up and list off five things in my life I am thankful for. They can be personal. They can be small and frivolous. Still, when I feel my life heading south, so to speak, I start reeling them off. Call it a personal rosary of sorts. As we approach the holidays, before the hype and hysteria hit, stop yourself for a moment and fire off five things to be thankful for. Here are some of mine...

I am thankful for...

Friends who don't always understand me but still care

An old truck that still runs

My son's voice as he belts out AC/DCs Longway To The Top....

Breakfast

I can run

Although it is what I do and not who I am - my job

A roof and a yard

Music

Parents who are in decent health

Cold mornings

The first cardinal of spring

The smell of dinner

Good doctors

That my brothers aren't perfect

Vivid Memories

Strong coffee

Artists

Roger Williams Zoo

Beaches just a short ride away

I can still play hockey

The color green

My wife's garden

Matteo's friends

Now knowing how to swim

A cluttered garage

Other writers

Good conversation

Poets

That I can walk from one point to another

Dragons

Red Wine

Matteo

...Pam...

Happy Thanksgiving

Cancer Hates Oxygen: Angels

Cancer Hates Oxygen: Angels: " 'Angels and ministers of grace defend us. Be thou a spirit of health, or goblin damned, Bring w..."

Angels

"Angels and ministers of grace defend us. Be thou a spirit of health, or goblin damned, Bring with thee airs from heaven, or blasts from hell, Be thy intents wicked, or charitable, Thou com'st in such a questionable shape, That I will speak to thee.”

Dear Joe,

This is your "official" notification that John Doe’s time with the ChemoAngels program is at an end as he is not receiving chemo at this time. His last scan results were good - isn't that good news?

I belong to a program called Chemo Angels. It’s simple really. You volunteer to guide a patient through their journey with little notes of inspiration. It’s a job that could last weeks, months or longer. There's no pay save for the fact that you may make a difference in a stranger's life.

Once a week you send a ‘note’ to your patient. Just an outside tag saying you are thinking about them. It could be humorous. It could be nostalgic. There are rules, however. You can’t ask about their status personally. You can ask through the organization however. You can’t be ‘depressing’. You know – “Well, you think you have problems? Let me tell you about mine…”

My patient must now learn to fly. It’s a tentative flight at best. I can’t really tell him this because it would break the rules but I want to scream the warning – Watch out for the cliff. Science is done with you. The hordes of doctors, nurses, rehab clinics…all gone. The storm is in your face and your toes will barely break the cliff’s edge. Time to fly. Your sand timer has been turned over. You get a reset button. How long? I don’t believe in fate but it waxes poetic to say fate will decide.

My run was tough today. I adore running in cooler weather as opposed to the summer heat. This time of year, though, the elements throw more than warm rain and sun. Wind, misting ice, leaves, everything.

I drove into my downhill trying to gain as much momentum as I could. When I turned the corner, I started my uphill climb. I can’t dwell on it much. It feels like it is at a forty-five degree angle.

My patient popped into my head. He has to go it alone now. After radiation, chemo and limb-severing surgery, he has to swim solo.

My strides grow smaller and I lean into the hill. My ungloved hands swell in the cold wind. One step at a time. That’s how he has to go from now on. One step. Deal with what he knows now, not 2 days from now. He's clean right this minute - right now. I want him to grab onto that and clutch it tight. Let no one take that away from his present moment.

I am halfway up the hill. I often wonder if the neighbors are looking through their windows at this nut running uphill, into the wind. My lungs are maxed. I am leaning into the hill but I still have to keep my torso straight. More air gets into your lungs that way.

My patient will have many hills to climb now. I supposed we all do. Most likely, I will never meet him. His universal path lies elsewhere.

I begin to crest the hill. This is good because my hips are protesting and my calves are looking for a golf cart.

The wind is actually pushing me down the other side of the hill and for a brief moment, I feel like a kid being pushed in a cart at the store. You want that energy to last forever.

I just hope I pushed my patient’s cart hard enough…