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.

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.