Freakin’ Bats (part 2)

Lets just say ALL THE BATS took off at once Sunday Night. It was a bad night. I went up like a Powder Keg. It was rather ugly.

Frustrations abound. My stress levels are off the charts. It seems especially bad after I have heard from my extended family. Unsolicited contact. Always stirring up the crap that settles to the bottom. It’s dark and thick, tastes like piss and vinegar…I have to spit it out.

I can’t stomach it anymore.

So I lash out. Channeling my aggression in the wrong direction. Taking it out on the wrong people.

I have to stop.

They have to stop.

There is no reason for you to continue giving a shit. It’s over. I haven’t cared in years…we’ve been playing games since I was a kid.

The lack of communication has been astounding, all the wasted years spent in church pews trying to live up to someone else’s standards instead of your own. The amount of denial you shrouded yourself in when I had Cancer…never saying the word “C A N C E R”… faith believing and pretending Renal Cell Carcinoma and Hodgkin’s Lymphoma were not present in my body or in my house on a daily basis…everyday since November 4th 2006!!!

Still to this day I am reminded, I WILL ALWAYS BE REMINDED I HAD CANCER BECAUSE THAT’S WHAT IT DOES TO YOU…it robs you of ever having a clear day that isn’t somehow tainted with the stench of chemo or the piercing sting of a needle accessing your port to send the drugs into your veins to kill you and save your life. I live with that everyday. “I may be cancer free, but I am not free of cancer”.

I live with the knowledge that growing up in a repressed christian household has left more scars than healed them. You always saw things in black and white terms never in shades of gray, there was never another side to consider in your house. And you never uttered a common swear word, but always passed judgement on fellow believers after a church board meeting. You hid the fact that you smoked cigarettes from your church family, this did not instill common ground with fellow human beings also trying to figure it out and making mistakes along the way. It instead became a lie that would cause more problems later on.

The lack of humanity and understanding I saw displayed toward fellow sinners (human beings just like you)…hurling insults behind the backs of family members with less moral fiber than you apparently had. The inability to relate to anyone on any level…including me.

You let the church (or Christianity for that matter) drive a wedge between you and everyone you knew. Family or friend. When it made sense to stand up and say something or protest- you didn’t.

I did.

And I was told to shut up. I was told I knew better. I was told I knew the scriptures well enough to make up my own mind (and I did) but the rest of you just followed the crowd like the lemmings you were. Never questioning or doubting anything being told to you. With each protest I was told I wouldn’t understand. So I stopped giving a shit…and so did you.

For all the mid-week services and bible studies you went to and all the glad handing bullshit you shared with those people every week for nearly 30 years, I ask you now…where the hell are they – any one of them? 

 You have made your bed and now you live in it.

I can’t take the bats anymore. I can’t take the melt downs and the stress and mind numbing confusion and lack of concentration. I can’t handle the depression anymore!!! I have my own problems and need my space.

You never treated me like an adult even after I became a father. I bought my own house and have been on my own since I was in my 20’s. And now that I have walked away you need to bother me. You suddenly want to talk…you want to figure out what makes me tick. You suddenly want to know what is going on behind my eyes…

You never explained Christmas Eve to me. Constantly telling me I wouldn’t understand. In case you haven’t noticed I am 40 fucking years old now…your mother has been dead for 21 years…I THINK I WOULD UNDERSTAND!

Try me. But then again…

I dont give a fuck anymore. You know why?

No, you don’t know why and you know what, I don’t think you would understand.

I need to move on. I need to move forward. I need to put one foot in front of the other and never look back. But you won’t let me. You obviously never saw this coming and you don’t understand how or why I see things the way I do…

I told you a few years ago that “the damage in me comes from the damage in you” (quoting Everclear) and it’s true. You seem to be okay with who you are and who you became. I saw what I didn’t want to become and stopped drinking the cool aid years ago,  maybe that’s why you don’t understand me…

You never got to know me. You have no idea who I am or who I became.

Too bad, so sad. You are a dollar short and a day late.

Now do me a favor…stop texting me, get out of my life and when you finally get to hell, keep the bats with you.

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Published in: on November 25, 2009 at 12:24 am  Leave a Comment  

When everything seems to work…

I have the moments, very short moments. When everything just seems right with the universe…it can hit me at any time and I get this sense of total at ease, it fills my soul. Its fleeting, gone almost as quickly as I notice it. And it doesn’t happen too often.

Since my last post I have not had any bats flying. I felt them flutter, but almost as if I invoked Joy’s name (whomever Joy might be) the bats have settled. My anxiety issues have become more manageable. Stress at work and in regards to my extended family have leveled off. (for now)

Perhaps it is because my wife and I have interacted with friends on different occasions and laughed A LOT. There was alcohol too but the camaraderie and laughter seems to have helped a great deal.

I am still listening to the new Switchfoot CD too much (driving my wife crazy with it right now) and I started dabbling in watercolors again.

The watercolors thing might have a large effect on my well-being right now too. My old art table is back in my life, last seen in our apartment nearly 10 years ago before we moved here. With some plans to finish the basement and other things never fully realized for many reasons (money and time but mostly Cancer getting in the way) a lot of things are still in flux…the state of our home and it’s need of repairs and/or refurbishing kept my visual art pursuits tucked away in my parents attic.

So Dawn found room, or more importantly made room for it and my son and I started playing with the paint last night. My son has shown some artistic interests and was buckling paper with too much water and letting the transparent hues go where the water would take them. He inspired me to be free and enjoy this experiment.

I am more likely to want to paint a certain way, but my tastes often run to the Abstract and my son was just playing with the water and amazing himself with what the paint could do. His innocence about it is incredible.

Needless to say my blood pressure has probably come down a few notches on its own since last night. The bats are non-existant right now and stress seems reasonable.

It’s amazing what works as long as you let it.

 Be Well.

Published in: on November 18, 2009 at 10:02 am  Leave a Comment  
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Freakin’ Bats…

Through all my church years I always heard…”Joy comes in the morning” …that’s great, but who the F*** is Joy and when is she gonna get here?

Even after a full nights sleep I often wake up lost. I had a good day yesterday. But this morning I’m sort of in between. My mind races to Work, Money, Family, Kids etc. Stuff I have no control over- and I know this, but it’s automatic. It’s in my nature. It’s hard-wired from the factory.

In fact sometimes I’m surprised I can sleep at all. (my BP meds apparently cause fatigue, so this must be helping) …mental health days being what they are, I need more of them. Can I build them into a flex account at work?

This is a mental health life.

It’s all in my head. Rattling around like a marble in a glass jar. Like a bird trapped in your house, flying into walls and windows looking for a way out.

Actually it’s more like bats. The proverbial bats in the bell tower.

Shit, I have bats.

Sometimes quiet helps, certainly music helps….but interaction with people who can listen lets me talk it out and that seems to quiet the bats. The bats stop flying and all seems ok with the world.

It’s when my mind wanders that they take off again… I feel like an announcement needs to be made…”The Bats are flying again people, watch out”

Freakin’ bats.

Maybe when Joy gets here she can help with the bats…

The key is under the mat Joy. Let yourself in…

-Scotty

Published in: on November 11, 2009 at 10:05 am  Leave a Comment  
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Everyday Stuff…

“The storms of this life shatter our plans. They tear through our world and destroy our hopes and dreams. They ruin sunny days, flatten the structures we depend on, and shock our world-views. Hello Hurricane is an attempt to sing into the storm. Hello Hurricane is a declaration: you can’t silence my love. My plans will fail, the storms of this life will come, and chaos will disrupt even my best intentions, but my love will not be destroyed.”

-Jon Foreman Lead Singer of Switchfoot.

The New Switchfoot CD “Hello Hurricane” drops today. I’ve been listening to it non-stop since yesterday. (my wife pre-ordered it for me for my birthday last month)…I’m very happy with it.

**********

Still working on the stress management… yesterday was a good day.

We went back to church. I have spent a large part of my life behind church doors.(Pentecostal/Assemblies of God) and I have spent the last 10 years being unsettled about that. After we moved I couldn’t find a church that “felt” like Valley Chapel did. Then some things in life got dark and I retreated from church and lost nearly a decade “looking for a church that felt like Valley” Finally… found a little church in near by Vernon NJ that fits nicely. So I am rebuilding that foundation too. It isn’t lost on me that returning to church has lightened some of my load.

**********

“You can safely assume that you’ve created God in your own image when it turns out that God hates all the same people you do.” – Anne Lamott

“To love at all is to be vulnerable. Love anything and your heart will certainly be wrung and possibly be broken.” – CS Lewis

**********

I hate the cats who live here.

**********

I am finding every day that I can not do things on my own, they always fail. It’s an easy church way of saying “without God…” I can do absolutely nothing on my own. I can’t get up in the morning, I can’t make coffee, I can’t drive to work, I can’t breathe…or be a father to my kids or a husband to my wife…I can’t write this blog post…

John 15:5

 5“I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing.”

“Apart from me you can do nothing”  …that is huge.

I think recognizing how small we are as human beings (who live like we have it all figured out) is a step towards accepting the fact that we are only human and extremely flawed and have God-shaped holes in our lives.  The vacancy is the space be between God and man’s sin. The Greatest Story ever told (over and over) is that God bridged that gap…himself and provided a way across the chasm. That is LOVE.

The primary theme in everything, written word, recorded song etc is LOVE. Too much of it or too little of it. The best and worst of us is displayed through our love and compassion for others. Mis-guided or pure, in the name of and in spite of. Love is the under lying theme of the Bible and Christianity. It’s been soiled and ravaged and misinterpreted and min-understood but it’s always been about Love.

It’s universal. “All you need is love” the Beatles even said so…

and to quote a song on Switchfoot’s new CD:  “All your dead-end fury is not enough…you can’t silence my love”

Amen

**********

Be well, Scotty

 

Published in: on November 10, 2009 at 9:48 am  Comments (1)  
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Neuropsychiatrist

Neuropsychiatry is the medical specialty committed to better understanding brain-behavior relationships, and to the care of individuals with neurologically based cognitive, emotional, and behavioral disturbances.

?????? … ????????????? Hello? ? ? ?

I spoke to someone at the Cancer Center of Long Island today and after her short battery of questions she didn’t deny the possibility of my issues being related to Chemo Brain but also didn’t deny the likelihood that it is more a result of some level of depression or anxiety and/or stress.

She recommended I find a Neuropsychiatrist who can better determine what is going on in my noodle and then discuss coping strategies.

So…am I crazy, overwhelmed, experiencing late-term side effects of chemo or just stressed out the wazzoo…?

NOBODY can or will put their finger on it.

After some internal assessment and talking with my wife I think she and I are in agreement it is most likely some level of burnout brought on by a lot, and I mean A LOT of external stress. And we discussed steps to peel away layers of stress and get to center of my problems and work things out from there.

If all the stress factors are removed and identified and my cognitive issues remain then it’s got to be “chemotherapy induced cognitive impairment”…good ol’ CHEMO BRAIN and then maybe I will seek out a Neuro-Shrink.

Ugh.

I can tell you this, the blank spots as I will call them, the momentary glitches in speaking that pop up now when I am searching for a word throw me off. And the momentary gaps in recall and retention are starting to wear me down. The frequency is becoming too common and all too disruptive.

I need some new coping strategies and I need them now.

But first I need to get a pad and write this down. I need to write everything down. In fact in typing this blog post I lost track of specifics discussed with my wife no more than an hour ago…(maybe) and I had to call her and go over what we just talked about before I finished that paragraph.

It’s wearing me down…

I can’t stand it anymore.

Be well

-Scott

Published in: on November 6, 2009 at 11:24 pm  Comments (1)  
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Maybe it’s just STRESS!!!

Since Nov 4, 2006 (when I found the swollen lymph node that started my cancer journey) this house (my family) has been under an usual amount of stress and emotional fatigue. Thru my diagnosis, surgery and treatment it was a roller coaster. I’ve been in remission since May 2007.

On Superbowl Sunday 2008 I got a text message from my father that started the next roller coaster…it would eventually lead to another cancer diagnosis in the family and lead to all sorts of new stress and emotional crap.

So…combined with regular everyday stress, work, bills, life in general…extended family bullshit has led me to this state of Burnout. It has affected my performance at work which had to be addressed with my boss and has been slowly eroding other areas of my family life as well.

It got so bad- a situation at work lead me to finally question and doubt and second guess everything…EVERYTHING. So I called Livestrong. I had to ask about Chemo Brain. Certainly it’s possible. Right?

I saw my Primary Care Physician for blood work follow-up on blood pressure issues and cholesterol numbers from my recent physical. So given the opportunity to talk about it I asked her about “mental fatigue” …forgetting simple things like which towel is mine or my wife’s. ??? after 13 years of marriage I can’t recall the towel on the higher rung is mine? Always has been?!?

She blamed it on stress and being too overwhelmed. She said quote: “We can only multi-task so much” and she advised me to keep an eye on it and if it gets out of hand to call her. Thankfully she didn’t dismiss it but I didn’t ask about chemo brain either. She has gone on record that the cancer is gone and the rest of my health needs to be taken into consideration. She would have dismissed Chemo brain as a source.

So even though I have not called the Cancer Center of L.I. back yet, I am concentrating on somehow managing the stress I have, doing what I can and moving on. The rest will just have to fall away…

Some notes on Stress:

Long-term exposure to stress can lead to serious health problems. Chronic stress disrupts nearly every system in your body. It can raise blood pressure, suppress the immune system, increase the risk of heart attack and stroke, contribute to infertility, and speed up the aging process. Long-term stress can even rewire the brain, leaving you more vulnerable to anxiety and depression.

Cognitive symptoms of stress:

  • Memory problems
  • Inability to concentrate
  • Poor judgment
  • Seeing only the negative
  • Anxious or racing thoughts
  • Constant worrying

Physical symptoms:

  • Aches and pains
  • Diarrhea or constipation
  • Nausea, dizziness
  • Chest pain, rapid heartbeat
  • Loss of sex drive
  • Frequent colds

Emotional Symptoms:

  • Moodiness
  • Irritability or short temper
  • Agitation, inability to relax
  • Feeling overwhelmed
  • Sense of loneliness and isolation
  • Depression or general unhappiness
  • Behavioral Symptoms:

    • Eating more or less
    • Sleeping too much or too little
    • Isolating yourself from others
    • Procrastinating or neglecting responsibilities
    • Using alcohol, cigarettes, or drugs to relax
    • Nervous habits (e.g. nail biting, pacing)

    … … … … …

    I have experienced a lot of these symptoms of late. So I think my PCP is right. Since February 2008 when this new cancer issue erupted in my family and other family dysfunction became the emotional center of the storm I have been under a tremendous amount of it.

    So in an effort to get back to myself and focus on my family and my personal needs I “walked away” from my parents and brother and began to take my life back.

    I have also started to pare down my life of the extra stuff I just can’t concentrate on anymore. I need to focus on as few things as possible. Keeping it (life) as simple as possible.

    So far I am down to: FAITH/FAMILY/WORK/WATERCOLORS.

    I have decided to level the negative stress with some relaxation. Water-colors is a throw back to my old art school days and something I have always wanted to spend time on. The “writing” can take a back seat for now…I am also getting tired of playing “beat the reaper” which is just me trying to get something accomplished before I die…I gave myself a deadline as a kid to be a professional cartoonist by my 30th birthday…life got in the way and here I am settling into 40 refocusing priorities and deciding to ease back into water-colors. Needing to let that self-imposed deadline go…I missed it, move on.

    Faith, Family, Work, Watercolors. 

    Simple.

    Direct.

    To the point.

    Suggestions on coping with Stress:

    A strong support network is your greatest protection against stress. When you have trusted friends and family members you know you can count on, life’s pressures don’t seem as overwhelming. So spend time with the people you love and don’t let your responsibilities keep you from having a social life. If you don’t have any close relationships, or your relationships are the source of your stress, make it a priority to build stronger and more satisfying connections.

    You can’t completely eliminate stress from your life, but you can control how much it affects you. Relaxation techniques such as yoga, meditation, and deep breathing activate the body’s relaxation response, a state of restfulness that is the opposite of the stress response. When practiced regularly, these activities lead to a reduction in your everyday stress levels and a boost in your feelings of joy and serenity. They also increase your ability to stay calm and collected under pressure.

    Most people ignore their emotional health until there’s a problem. But just as it requires time and energy to build or maintain your physical health, so it is with your emotional well-being. The more you put in to it, the stronger it will be. People with good emotional health have an ability to bounce back from stress and adversity. This ability is called resilience. They remain focused, flexible, and positive in bad times as well as good. The good news is that there are many steps you can take to build your resilience and your overall emotional health.

    Link: http://helpguide.org/mental/stress_signs.htm

    So as I try and take my former blog title as advice. (Taking Life One Day at a Time)…I truly am trying to live in the moment and take each day as it comes. One at a time.

    I have realized Cancer may not have killed but this stress just might. I’m not going to beat TWO cancers and let some petty emotional family bullshit run me into an early grave.

    Family dysfunction has been around since Cain killed Abel. Why should my family be any different?

    Working on getting better…

    Be Well.

    -Scotty

    Published in: on November 4, 2009 at 9:43 am  Leave a Comment  
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    More on Chemo Brain…

    (Chemotherapy-induced Cognitive impairment) AKA: Chemo Brain

    I spoke to a member of Livestrong.org in reference to my recent memory/concentration issues. My info was forwarded to The Cancer Center of Long Island (with whom I am now playing phone tag). Melissa at Livestrong felt very strongly that what I am experiencing is “Chemo Brain.”

    From The Mayo Clinic:

    Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, cognitive changes or cognitive dysfunction.

    Though chemo brain is a widely used term, it’s misleading. It’s not yet clear that chemotherapy is the cause of concentration and memory problems in cancer survivors. And many cancer survivors with memory problems still score well on cognitive tests, leaving doctors wondering whether chemo brain really exists.

    Despite the many questions, it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

    I also found in a NY Times article (with my wife’s help) this comment to the following article:

    It seems to me odd to talk of chemo brain without reference to specific therapudics. Do all chemotherepudic drugs cause chemo brain? About 25 years ago, I had Hodgkin’s Disease. A course of drugs I took included vast amounts of prednesone, a steroid. It made me temporarily psychotic. –extreme chemo brain. But after that drug was eliminated from my regimen, my recollection (cloudy as it is now of those times long ago) is that the psychosis abated and I returned to near normal, while on other seriously strong drugs. For the cognicenti, MOPP had the steroid and ABVD was alternated with MOP (no more prednesone). So far, I am in remission.

    -Bob Roistacher

    I received ABVD for Hodgkin’s as well and steroids were pre-administered as well. I was told some Steroids were also in the anti-nausea meds I received. So I’m full of questions. Typically most cases of “Chemo Brain” being reported are mentioned with primarily Breast Cancer treatment. But it seems a lot more research is needed with this particular side effect. Melissa at Livestrong agrees.

    Signs and symptoms of chemo brain may include:

    • Being unusually disorganized
    • Confusion
    • Difficulty concentrating
    • Difficulty finding the right word
    • Difficulty learning new skills
    • Difficulty multitasking
    • Fatigue
    • Feeling of mental fogginess
    • Short attention span
    • Short-term memory problems
    • Taking longer than usual to complete routine tasks
    • Trouble with verbal memory, such as remembering a conversation
    • Trouble with visual memory, such as recalling an image or list of words

    (I can relate to maybe 7 out of the 13 above…that’s about half)

    NYT link: http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/

    The fact that I am 2.5 years out of treatment and just starting to experience this is confounding me. But it is much like my recurring bone pain which neither of my Dr’s will relate to my treatment, it comes and goes on it’s own will. This memory issue appears to be easily traced back to a few innocent occurences this year. As far as I can tell not much further back than that…but just like when I was finally diagnosed it call came together after I recognized the symptoms. Once I knew what they actually were, I could trace them back a full year.

    Tomorrow I follow-up with my PCP on new blood work and my BP issues. Hopefully my new weight will lower cholesterol numbers and get me off the BP meds and keep me away from Cholesterol Meds. I will bring up this memory/concentration problem and see what she recommends.

    I will not see my Oncologist until January (after my year-end PET scan) unless someone at The Cancer Center of L.I. advises me to get him involved in some form of treatment here.

    Here is another article: http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&em

    From that article: 

    Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

    The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

    In those affected — and doctors at this point have no way of predicting who might be — it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

    and another: http://www.nytimes.com/2009/08/11/health/11brod.html?ref=health

    So this shitty adventure with cancer continues to take me along for the ride and it doesn’t seem to be going away anytime soon.

    By the way November 4th is exactly 3 years to the day I spotted the swollen lymph node in my neck that changed everything…that will be another “odd” day for me, as will most of this holiday season since so much of it was tainted with exams and scans and needles and Doctor consults etc.

    On December 19th I will mark 3 years since I was officially diagnosed. AND I AM STILL HERE!

    Late term side effects be damned.

    Be well.

     

    Published in: on November 2, 2009 at 10:11 pm  Leave a Comment  
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