True colors shining through...

I've come to strongly dislike certain colors of the spectrum. 

Actually, the only color currently on my shitlist is RED.

Red is the color of the blood my body is lacking, which brings with it fatigue, shortness of breath, paleness, headaches, and all around weakness.

Red is the color of the liquid in the baggy attached to the IV pole when I get my iron infusions, which brings with it nausea, bloating, and a general feeling of malaise.

Red is the color of the folder I'm handed when I walk into the cancer center to receive my infusion, which brings with it a ticket to the room of recliners filled with other shallow faced patients receiving infusions of chemo, iron, or whatever other poisons are supposed to help. 

Red equals anger, pain, and depression.

I hate the color red.

In 5 years time...

It's been about five years, give or take, since my diagnosis. Overall things have been ok. I've been somewhat healthy in those years, not counting any common variety cold or flu bug that may have crossed my path.

In general, things were good.

Were.

Five years ago I was told that most people usually survive five years before requiring a transplant. I figured I had a head start since most people usually don't receive their diagnosis until they are symptomatic. I thought I had more time.

I fear that may not be the case anymore.

At the end of December of 2015, I developed a very bad case of anemia. I've had to have 5 blood transfusions since that hospitalization. Yes, each transfusion brought with it between a 3 day to 2 week hospital stay, multiple probes, tests, and indignities.

Every week I find myself at the cancer center along side cancer patients receiving chemotherapy, as I myself recover IV iron infusions, with the small hope that it will curb my lack of blood.

So where is my blood you may wonder? It's being systematically destroyed by my body faster than I can produce it. My spleen and liver are hoarding red blood cells which never make it to the iron to create what it needs to in order for a body to function.

In short, my organs are slowly failing.

I'm forty years old now. I don't know how much more fight I have left in me.

But it's back on the test, wait, test again carousel for now.

I hope in 5 years time things will finally stabilize, and I can finally breathe.

Under pressure...

I've been finding myself humming the opening riff of what folks my age would automatically recognize as "Ice Ice Baby."

However, I not doing so as a plea to "stop, collaborate and listen." I'm doing so because what it am is "Under Pressure."

I'm under pressure at work.

I'm under pressure at home.

I'm under pressure at my doctor's office.

It seems all I do is work all the time, and yet there's never any money to show for it. It gets sucked up by my doctors, medicines, procedures and tests. It disappears immediately. 

I worry about money constantly.

I worry about my health constantly.

I worry about my family.

And on those rare days I feel worry-free? Someone will ALWAYS show up and drop a new worry in my lap.

I'm the one everyone comes to when they are in trouble. I'm expected to solve their problems. I'm supposed to know all the answers. I'm the strong one they say.

I'm not strong. I'm tired. I'm angry. I'm frustrated. I'm stressed. I'm not fucking strong. 

I just want to sit in a dark room and cry angry, frustrated tears.

I want to run outside and scream.

I want out of this situation.

I just want out.

Why won't they let me out?

My doctor told me I've developed an ulcer. The response I got from my support system? What do you have to be stressed about?

What do *I* have to be stressed about?

This is my last dance.

This is myself, under pressure.

Keep me hanging on...

It's been a while since I updated this blog. 

I can only beat a dead horse for so long before the horse no longer resembles what it once was. 

I'm sick.

It sucks.

Repeat.

I'm still breathing, still asymptotic, so I suppose that's good. It just doesn't make for good writing material. 

During my time away from notating my slow progression towards the light, I've had a chance be an observer. When I go to my doctors, or to the hospital, I watch my fellow patients. I imagine what their lives are like. By their dress, or manner of being, I try to guess what others may see when they see these folk out and about the mundy world.

Do they just see a drunk? 

Do they see a crabby old bastard?

Do they see a punk kid with no respect?

What if they saw them all here, in the waiting room at the Organ Transplant Center? 

I see people from all walks, all battling a disease that yes, can be self inflicted, or can be genetic. I see the looks in their eyes. I can see those who have given up. I can see those that still have the fight in them. I can see what may become of me, as though watching through a foggy glass.

Because of my being asymptotic, this disease is nothing but a spectre, ominous, but as solid as wisps of smoke to me. I'm disconnected.

I'm not naive, I know how this disease kills. It's drawn out. It kills your organs one at a time. It's painful. You drown from the inside out. I've seen people I love go down this road. 

I recently lost a friend to this disease.

He was one of those few who finally gave up, and let the disease take him. He gave up the fight during a bout a deep depression. 

But still I feel the disconnect.

My test results show no progress towards that destination. 

And that keeps me hanging on.

Distractions in its many forms...

I've never been one to lack hobbies. 

When I was younger I collected baseball cards, non sports movie cards, stickers, and all manner of cheap candy store counter fare.

As I got older I switched to comics and toys.

I draw, I paint, I play video games, I used to play tennis and I've taken up running.

I always figured my hobbies were my way of handling my addictive personality. Addiction runs in my family from the silly (arts & crafts, sports, memorabilia) to the scary (drugs, alcohol, eating disorders). I suppose I'm lucky that all in my immediate family tended to find their addictions in the silly. My extended family was not so lucky.

I'm the first to actually recognize and admit our "familial habits" as addictions, though. 

Since the age of 15, I've looked at my hobbies as an addiction, and I've accepted it as a force stronger than myself. But I figured that as long as it wasn't hurting anyone, myself included, it would be okay. 

I continue collecting, drawing, playing, and running to this day. I meet all my obligations, I pay my bills, I go to work, I spend time with family, so I figure its still okay.

But is it really?

I've been asking myself this with greater frequency lately. 

Are my "hobbies" addictions or are they distractions? Do they fill a hole in my life, or do they just direct me to distraction? Is it the same thing?

I've found myself obsessed with various distractions... All to avoid my pending medical issue.

Isn't that what addictions do? Allow you to avoid pending issues in your life? Something to take the pain away? Or is it just a distraction that you could control if you really tried?

I don't know.

All I do know is I'm going through life right now in a state of active denial about my final fate. It's an "active" denial since I'm purposely distracting myself to forget it. Maybe if it was a passive denial it would be better. I'd be able to believe it and it wouldn't haunt me during the quiet moments.

I'm done rambling incoherently. I have no point to this blog. I'm just doing this to distract myself anyway.

The road is long...

Sometimes I feel I'm drowning in quicksand.

I fuss.

I fight.

I struggle.

I can't breathe.

I can't find solid ground.

I slip.

Those are the worst of days. The days where everything is beyond overwhelming, and the noise in my head is so loud, the simple functions of life are the hardest thing. Those days I want to quit.

I want to fly my white flag and scream to the heavens, "You win! I'm done!"

Then there are days where everything is perfect. Those are days where I feel human and alive. I have energy, confidence and hope.

Those are days I want to fly the Jolly Rogers and given the heavens the one finger salute.

Technically speaking, given my exemplary test results, both blood wise and very expensively radiological wise, I should be sporting a parrot on my shoulder at all times. But I still fret. 

It's not physical, though my condition is quite firmly a physical one. It's all mental.

They always say getting there is half the fun, but I feel like this is my own private Ho Chi Minh trail. The journey sucks and the destination sucks more.

It's hard to find the good and the fun on the way to death... But my only other choice is to be miserable, and I don't think I can pull off a convincible French accent.

The road is long, 

we carry on,

Try to have fun in the meantime...

And the hits keep on coming...

Over time, I'm come into a form of acceptance with my condition.

I know the things to eat or not eat; drink or not drink; do or not do, that will allow me to maintain the status quo.

It's now become a second nature.

I'm used to being sick.

What I'm not used to is watching a loved one go through a similar experience.

A couple of weeks ago, I came home from the time waster that is my job to find my spouse with double vision and an extreme case of vertigo. We were both concerned that we decided a trip to the emergency room was in order.

I'm glad we did.

Results showed a stroke.

A stroke.

My constant in this never ending battle with my disease, the person I love most of all, who would face the hordes of hell by my side during my neediness, my rock... had a stroke.

"Overwhelming" is an under-exaggeration.

It felt like someone dumped a bucket of ice right on my head. Within minutes I knew my worldview had changed again. I knew the time for my self indulgent introspection was over for now. Now, I had to be the strong one, the rock, the constant...

So, I stood up, squared my shoulders, and took it.

Things have settled since that first shot across my bow. We're both lucky that there are no lingering after effects. There is no weakness, no loss of motor function, no proof that a stroke ever happened. If not for the telltale "spot" on the CT and MRI, I could almost imagine that it was all just a very bad, and unfunny dream.

I've come out this experience felling stronger, yet more vulnerable than ever before.

My spouse came out of this experience a little scared, a little in shock, a little angry, and a little confused... much like how I did, when I first heard my diagnosis.

In the end, I think he came out of it with much more understanding. He now knows how I feel. He says he gets it now, and every time he has to tell someone new.

I really wish he didn't.

It's not that I don't welcome the understanding... I just wish he didn't have to learn first hand.

I wish it had been me.

Help me heal me...

I'm a fraud.

Everyday I wake up and pretend everything is fine, I lie to myself and everyone around me.

Every time I go out and run several miles in fancy running gear, I'm just a child playing dress-up hoping mommy won't catch me.

Every charity I volunteer for; every donation of my time is a falsehood wrapped around a very real personal need.

I'm not fine.

Everything I do; everything I throw myself into is a distraction from the truth.

I'm hiding.

I'm trembling.

I'm so scared of dying, I'm trying to live to the fullest... only to find my life is not my own.

I need a vacation from myself.

I need to heal.

Doctor, doctor; Can't you see I'm burning, burning...

Inaction is stagnation.

Action, on the other hand is terrifying.

My doctors weigh the pros and cons of action, and they recommend inaction.

I'm told there is very little to gain and too much to lose by pursuing an aggressive stance.

I'm told my situation is ideal.

I'm told I should be relieved for the time being.

So why is it that I'm not?

I don't want to be sick.

Honestly, I don't want surgery.

But still I carry this uneasy feeling in my heart. I know I'm sick. I know I must remain vigilant. I'm a ticking time bomb on the verge of exploding...

I'm burning inside, but the doctors don't seem to notice.

In my heart I want to live forever...

This time of year always gets to me.

I know that's not an isolated phenomenon. The holidays tend to hit everyone especially hard. It's like, if you're given a moment of peace, in the stillness of your mind you can't help but think of what you lack versus what you have.

You look around the table and instead of seeing the smiling faces of your loved ones that are physically there, all you see are the vacant seats that were emptied much too soon.

In my melancholia, I can't help but wonder if my seat will be vacant soon. And if so, will someone glance and see me as missing?

It's an interesting perspective. That is, to look at loss during the holidays from the other side of the proverbial veil.

I don't really want to be mourned once I'm gone, but at the same time I do want my absence to be noticed. Will it be noticed?

Shakespeare once noted, "The evil that men do lives on after them; the good is oft interred with their bones..."

What good have I done to be buried along side me? Will my trespasses truly be all that's remembered?

I don't know.

I hope not.

I leave no heirs; no legacy.

All I leave will be that empty chair at the table.

But I guess I'm giving up again
I guess it's fair
I guess it's fair
I guess it's fair
I just don't... care.

565,600 minutes...

How  do you measure a year in the life?

It's been one full year since I became aware of my condition.

The changes I have undergone in this year amaze me sometimes. Sure, I've had many ups and downs, as most would in a typical year, but I'm talking about philosophical changes. Changes in perspective, in attitude, and changes in my core self.

I went from someone coasting through life, just trying to make it to the next weekend to someone that wakes up every morning/afternoon grateful to be alive.

Funny how the prospect of dying changing your every day living.

I've had many moments of doubts.

I've had moments of anger; moments of rage.

I've had moments of undeniable and abject sadness and fear.

I've had moments of self pity.

I've had moments.

But a moment only lasts for so long. A year is made of 565,600 moments. Speaking strictly in terms of the odds, I'd say I've had more positive moments than those of doubt, rage, sadness and fear.

I'm a different person than I was a year ago.

But somehow, I am still the same.

It's hard to put into the words.

I'm still dying.

I'm still not happy about it.

And yes, I'm still afraid.

But I'm no longer afraid of living, and I've realized I may not be able to beat this this thing, but I can give it a run for it's money.

I have love. I have everything.



"Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love? Measure in love"

-Seasons of Love; "Rent"

No gnus is good gnus...

It's been a rather uneventful period in my illness. Again I find myself treading water and doing a pretty good job at it.

Beyond the knee clipping colds and upper respiratory infections that seem to be crawling out of the woodwork of my life, my health has been pretty okay.

I sometimes find myself wondering if this year actually happened. I don't feel sick. I don't act sick. I don't look sick. It's weird.

Of course, I know I am sick. I've got medical proof in the form of "results" from bloodwork, CTs and soon, an MRI. But to me, all these "results" boil down to is paper. That's all I see. I see paper with black print on them saying, "Hey, you're dying!"

But I don't FEEL like I'm dying.

And for right now, that's good enough for this Gary Gnu.

My karma ran over my dogma...

It's been an interesting set of weeks.

It seems I cannot completely shake this viral infection that's taken hold of my body.

I beat it into submission for a while, but it then flares up unexpectedly when I am feeling at my best.

I was adamant about not reaching the lows of before and I monitored my fever as it rose higher and higher. I followed medical advise and took clinical strength Motrin to bring it down, as Tylenol is verboten. It worked. My fever was controlled. I was proud of myself... until the fatigue kicked in.

I was tired.

People noticed my pallor.

I couldn't walk 3 feet without sucking air.

I recognized the symptoms. A doctor confirmed it. I was running out of blood.

Seems the Motrin that kept me out of the emergency room by controlling my fever, thinned my blood out so much, I was bleeding through my veins.

Damned if I do, damned if I don't.

One blood transfusion later, and I'm sitting here wondering what I can do to prevent THIS from happening again.

Motrin is now on the list of banned medications along with Tylenol. As is any other medication that may thin my blood, or affect my liver.

It's times like these that cause me to ask the very cliched "Why bother?"

Why should I fight?

Why don't I just lay down and follow the Beatles' advise and Let It Be?

I stare at the bruises on my arms as they remind me, no matter how good I feel, I am not good. I'll never be good again.

On a clear day I can see forever...

Received good news for a change.

The new specialist I'm now seeing says my lab results are good and my CT shows no further deteriorating of my organ.

In other words, I'm not getting sicker. I'm holding fast.

He seemed surprised, and actually pleased to be surprised. Odd. To see a doctor actually be pleased that I'm doing well is something I'm not used to. Having a doctor be a jerk and barely listen to me, THAT is the norm.

Regardless, he was still surprised and explained his surprise came from years of having patients not follow his advice, and get progressively worse on each visit. He was happy to see that I took his advice to heart. I told him I didn't think I had much of a choice. I was the one to seek him out. It'd be counterproductive to not heed it.

We came to an unspoken agreement at that point, I believe. I won't compare him to my previous bastard of a doctor, and he won't compare me to his previous apathetic patients. I'll do what he says, and he'll work with me. We will be a team and not adversaries.

This gives me strength.

This gives me hope.

This gives me peace of mind, and soul.

I found love in a hopeless place...

We all take things for granted on a daily basis. I'm no more guilty of this than I am less guilty of this.

I take the fact that the sun will rise tomorrow for granted.

I take for granted that when I wake up there will be food ready for me to eat, courtesy of my ever suffering and overworked spouse.

I don't worry about these things, whether big or small, because I've come to rely on them. They are facts, in my world. They are unchangeable, steadfast & permanent.

I'm wrong, of course. As I am about a great many things.

That's the thing about taking things for granted. You never realize you do so until your world is shook, and you come to find out that permanence isn't always permanent.

I used to take for granted the fact that I could easily walk from here to there, or I could eat anything I wanted without an adverse effect, or even that if I cut myself I would clot SO fast there was no need for a bandaid.

Having been dealt a blow to my worldview in the past so many months, I am now less inclined to take stuff like that for granted. I know now, that it's only matter of time before I find it harder to walk, or when my diet will be restricted even further, or when I will bleed out.

I'm more aware of my blessings, in essence. I'm conscious of the good, where before it was an afterthought, if I even thought of it at all.

The odd thing about this transformation of my perception is that I have been granted a new view, not just of my world, but of myself. I don't take myself for granted anymore.

I'm working on improving myself, because I realized once I discovered I was taking myself for granted, I was also neglecting myself. I don't know why. It could have been residual teenage self-loathing, age related depression, or simply laziness. Perhaps the truth lies in a combination of all three with some yet undiscovered cause. I don't know, and I don't care. All I know is that it's over.

Like with many things taken for granted, the power lies in ignorance. Once you know you're taking something for granted, you tend to do it less, even if just out of guilt. Boom. The power is gone.

So I'm now vigilant.

I'm still taking a few things for granted, like the sun rising, but I do take a moment now and then to watch it rise and allow myself to bask in the awesomeness of it.

Small steps.

If anything good has come from my facing my mortality it's this.

If I could do it all over again...

One of the topics I now cling to is that of regret. I guess it goes hand in hand with this nostalgia for better days.

I sometimes wax poetic on the many choices I have made in my life, and with the superpower of hindsight at my disposal, question them.

Do I regret many things I have done? Sure. But oddly enough not as many as I would have thought. I regret times I've lost control of my anger and said things or done things just to inflict pain, not because I actually felt them. Things I have done, or said that I genuinely felt, regardless of the outcome, those things I do not regret.

So does that mean I'm genuinely happy with my progress in life if my regrets do not outweigh my triumphs? I don't know.

I'd still do a few things differently.

Not many things, just a handful really.

I'd love to have a conversation with myself and give myself advice at various stages of my development.

I'd take 4 year old Anna aside and say, "You won't always be lonely. You'll make friends who will genuinely like you for you. Don't try so hard."

7 year old Anna would be told, "Girls are jerks. Forget them and stop trying to be something you're not comfortable with. Go play with the boys and ignore their taunts."

My 10 year old self would be told, "Buy that Don Mattingly card for $1. You'll always regret it if you don't."

Teenage Anna at the ripe old age of 16 would receive the best advice. "Don't be ashamed. You are more beautiful than you believe yourself to be. Don't sell yourself short. Don't be afraid. Your heart may hurt but it will never break permanently. Go to the University of Miami."

It's bittersweet to linger on these thoughts. I remember my innocence and long for it, but don't wish to lose the self I've become.

We are after all the sum of our experiences and by default, our choices. Sure I may not have the job I want, but I am the person I want to be. Perhaps those things I wish I could change, those regrets I would prefer to avoid, are the very things that have shaped me.

I still wish I had bought that 1986 Topps Don Mattingly card, though.

Nothing's what it seems; Nothing but debris...

It's funny how in the course of this year's health upheavals, the simple way in which I react to new things has be changed. In short, I take bad news with a silent acceptance, and I take good news with a grain of salt.

It seems sad to think that I now come to expect the bad, and disbelieve the good.

I used to think I was a cynical pessimist, but I've come to find out, I had no clue as to how cynical or pessimistic I could truly be.

Perhaps it's this sense of betrayal I carry with me now. This sense of being cheated somehow, by my body and by extension, my family has given me a bad case of the "once bitten, twice shys."

All I know is when I read the doctor's reports stating all looks "normal" in my CT scan, I can't help but ask myself, "how normal is normal, when my biopsy SHOWS the progressive, permanent damage to my organ?" Obviously the scan is wrong, or the doctor is blind. No way could I be holding ground and not getting sicker.

There has to be more.

I mean, I have no symptoms. Are you going to tell me I have no illness too?

Just because my test results come back as good news, it doesn't mean there isn't the spectre of bad just below the surface.

My body showed no signs of sickness all those months ago, and if it hadn't been for a coincidental finding during a test for an unrelated matter, I would never have been diagnosed. I can't help but to hold onto that fact. That is my proof that my body lies and cannot be trusted.

And when the trust has left, what else is there?

Nothing.

So now I find this lack of faith affecting the good along with the bad.

That's my emotional fall-out.

Debris indeed.

Reach out and touch faith...

They say there are no atheists on death row.

That's because once you accept the fact that your time on planet earth is up, well, you try to grab hold of anything that may bring you comfort and the idea of an afterlife is incredibly comforting. Also you must not discount the fact that with nothing much to lose, giving yourself over to religion and it's organized indoctrination is really not much of a gamble.

So my question is simply this: Why am I finding faith in a higher power so hard to accept?

Why do I continue to question the mere existence of God, heaven, etc?

Sure, I was raised Catholic. I went through the years of study, I've read the bible and the apocrypha, I understand the teachings intellectually. I just have a hard time grasping the so-called "mysteries."

In search of my faith I've read the holy books of various other religions, I've studied them, even tried a few on for size, but still blind faith has eluded me.

I'm sometimes envious of those who's beliefs are so set in stone that they would die for them. It must be awesome to know, just KNOW you are saved, or chosen or whathaveyou.

Heck, I'd settle for knowing that there is someone out there controlling the cosmos. It would make me feel better.

I can't bring myself to pray for myself. Not without at least attempting to believe. It's hard.

I'm pragmatic. I try to hedge my bets whenever I can, at least make an effort in taking chance out of the equation. Why can't I do this now? I'm dying. I should be wearing my rosary thin, just in case.

Perhaps I hold those with faith in such high regard that I feel it would be an insult to them to do so.

Perhaps I'm too skeptical.

Perhaps I haven't reached the point of grasping at straws.

I don't know.

I don't know anything.

I have a secret...

For the past 11 years I have been counting down to my death.

A few of my loved ones know this. No one speaks of it. Most think me down right daffy for clinging onto this fear. A select few worry.

You see, I am convinced I will pass away sometime between mid February 2012 and the beginning of March. I have been convinced for the past 10 years (coming on 11 years soon). From the moment I noticed the pattern, I became sure that there is some sort of 11 year curse in my family that affects the women on my mother's side.

From the moment I turn 3, my mother and I shared an interesting quirk. Every 11 years our ages would be inverse. I turned 3, she turned 30. 11 years later, I turned 14, and she, 41.

But what is most peculiar about this quirk, is that every 11 years there's been a death.

Age 3: my great grandmother
Age14: my grandmother
Age 25: my mother

I will be turning 36 soon. Logic dictates I'm next if the pattern is to continue.

My diagnosis in July only helped to push this fear into the forefront.

Am I crazy? I don't know.

Hopefully I'll be wrong and come April I will have made a fool of myself for unnecessarily worrying.

If not, let this blog entry be my testament, that I knew it was coming and though scared beyond all that is and ever was, I am standing tall and not giving up.

I'm dying... But I'm not dead yet.

Occupy this! I am the 1%...

No, I am not among the wealthiest 1% of Americans.

What I am is the legendary statistical 1% that exists in all of life's caveats.

You know... "This treatment is 99% effective" or "There's only a 1 in a million chance of possible side effects." Say hello to the 1 in a million to experience the side effect, or the 1% which will not react effectively to said treatment.

The whole life I have been the 1%. Sometimes it has worked in my favor, such as achieving a high scores in school. However, for the most part it has been more of a burden than a blessing.

When I visit my doctor and ask for the worse case scenario, I am told I should be less pessimistic. I am told I should be positive and think good thoughts and not worry about that small 1% chance of something going off script.

Excuse me.

I guess you would know my track record better than me, seeing as though you've known me for 6 months and can't seem to remember my name without looking in my chart. I guess my 35 years of living as the human exception to the rule does not qualify me to plan ahead for what can most certainly occur TO ME.

I apologize for my arrogance, in wanting to be informed of ALL eventualities.

The pathetic thing is, even though I know without a shadow of doubt that I will be the statistical variance, I still maintain hope that this one time, just once, that I will beat the odds.

I have hope.

I am positive.

I will fight.

So fuck you Dr. Know-Nothing. Fuck you in the ass.