Patriotic Mumbo Jumbo

Its no secret I went to a Catholic High School here in Dayton.  Did I enjoy it?  Not particularly.  Being who I was, not only gay, but being a free thinker and challenging the establishment, was not the way in which one was to handle themselves at Carroll.  Of course those formative years can be different for everyone, though as the gay kid in band I wasn't exactly riding the popularity wave, but retrospectively, I was okay with being just me, rather than conform to what was "in".  Would I go to a reunion?  I don't really know, to be frank, the people I do remember from high school who I would like to see again, I already keep in contact with so that sort of defeats the purpose and it seems as you progress into the reunions that are 15 years and onward, the school really pushes you to donate financially to them.   They also like to do this bi-annual magazine deal that clearly some tool that barely knows how to open indesign let alone use it creates in 15 minutes... i digress... But it is the one thing from the school I do leaf through when getting only because it has the section in the back where your classmates can write in and tell of their success.  Although, I truly think it would be great if you could put the bad things that happened to you as well, especially the 'popular' people, to make people like me feel better about themselves.... Picture this...

"Heidi Gooch, at age 26, was diagnosed with Herpes following her 8th visit to the Maury Povich show on her quest to find the father of 16 month old Bufonaquishria, sadly her quest is ongoing, and Medicaid has denied her claim for treatment of herpes, as it was a pre-existing condition.  She hopes to one day finish her application to Sinclair Community College to start her post secondary education as an undeclared major.  She currently is out of work"

I mean seriously - would not that be the greatest thing ever?

In any event, while I was at Cedar Point I came home to find 4 copies of the most recent magazine strewn on the dining room table - my whole family attended the same high school, cute right?  And in it I was reading about retirements and how the sports teams ended their 2010 spring seasons and of course the band is going to doing well this year, etc.  So I flip through the middle pages, about 10, that are filled with names of alumni who are donors to the school, because in essence this publication is nothing more than a shameless plug for the donors, and I stumble across the back inside cover with the title 'In Memoriam' - a new section.  Naturally my interest is peaked, more so because I don't go out of my way to keep in contact with many people from high school and the ones that I do speak with, don't turn in those high school circles either.

So as Im reading, Im noticing a lot of people passed away from old age or middle aged heart attacks / strokes etc. but the last entry was not an alumni, it was a current student who was set to graduate in May.  I, for the life of me, can't remember his name - but his story was so frightening to say the least.  He had been diagnosed with an aggressive form of Leukemia only a few months before he lost his fight.   Just like that, click... its over.

So I finished reading the blurb about him and put the magazine back in the filing cabinet, which also doubles as a garbage can and I took off for a drive and got to thinking about this kid.  I doubt he had the opportunity to do much in those few months as he was trying to fight his cancer, and trying to find a bone marrow donor that was a match to him - talk about a needle in a hay stack...   This in turn got me to thinking again about how fortunate I have been, even though near death multiple times, I have been able to recover and keep living.  The first time I was in the hospital I promised myself if I walked out of that place, despite my physical limitations, I was going to do as much as I could while I could still do it.   Much to the chagrin of my Oncologists and other doctors who like to treat me as though I am a fabrege egg, I know that I have to live for today.  

You can bet your bottom dollar that I wrote out my list of things I wanted to do or see, within reason, and started checking stuff off my list.  From skydiving, to bungee jumping, to wake boarding, to flying an airplane - I have some pretty interesting things on my list.  I want to go back to Orlando, to D.C. to Vegas and Los Angeles and even dear San Francisco to name a few.  My 'bucket list' contains things that, come hell or high water, I will do before my time here is up.  I've got quite a few check marks, and sometimes I even make an addition when inspiration strikes.

But - as I was thinking about this young man from Carroll, it really just bothered me that he probably didn't get the chance to make his 'to do' list.... He probably didn't even get to Make A Wish... it just made me sad, but it also reminded me why I don't pity myself, and moreover why I don't want others pity.  I look at myself as Ryan who happens to have cancer, is it bad, well yes - but to act as though I have it so terribly would be egoistic and inefficacious as there are so many other people who have it so much worse off than me.

I guess when my name pops up in the In Memoriam section of the Carroll magazine, then feel bad for me - until then, save it.

Im sorry, but I have a date with a needle...

Despite my most valiant efforts, I will not be able to garner a good nights sleep this Thursday eve, the reason, as is the same once every three weeks - Chemotherapy tomorrow.   I like to think that I'm sort of an 'old soul' so to speak when it comes to this more than monthly happening but the truth is, I still have trouble sleeping, out of nervousness, the night before.  

I have the same trepidations every session, as I think most cancer patients do.  First, you should know, due to the severe risk of infection at the time of diagnosis and my inability to remain healthy enough since, I do not have a portacath (d/b/a - 'a port') - These are especially helpful to people who are on longterm chemo, such as myself, whose veins are subsequently destroyed by the countless needle sticks and flowing poison. So naturally while I don't have a fear of needles per se', I do have a fear one day they wont be able to get a peripheral line started and, GOD FORBID, I have to whip out the ole' crotch-eroo and take chemo, essentially, up the whoo haa... Could you imagine walking around the hospital with a bunch of IV tubing running from the pole, down your pants?   Strange, yet totally funny all in the same... 

So I fear that obviously, and I fear my white count (ANC) not being high enough to have chemo.  I bet you didn't know this - but when you have chemotherapy the point is to wipe out the white blood cells which it does very well mind you, however, they need you to rebound just enough, so they can pump you full of more poison and knock your white cells back on its ass.  So for a normal person your white count is somewhere between 8.0 - 12.0... Mine hovers in the area of 0.8-2.0, although as the current cycle ends, naturally my white count gets higher.   Truth be told, I've been denied chemo many times because I haven't had enough of a white count to destroy - Why waste the poison, yes?

In addition, I have other fears, obviously that the cancer will spread, I'll need a transfusion or especially if the Oncologists want to alter, or change altogether my course of treatment.   Then of course there is the hum dinger of all the fears, the one I think every cancer patient has in the back of their mind that they never really want to address... That being, Chemotherapy is no longer a viable treatment option as your illness has progressed too far.  

I try not to think about that, because a scenario like that does not happen over night... A few weeks, yes, but certainly not 'overnight', but the reality is, its a thought I have had, and hate that I have it.  

I usually don't have, if any, an emotional response to these fears though through my own interpretation of the most benign phone call from the Oncology office my mind flooded with these fears a few days ago and I, much to my chagrin and inability to hide it, had a little break down in my car on the way from the hotel to Cedar Point.  It's that type of moment I try to avoid having in front of people because (a.) I don't want pity, but I also don't want to make anyone uncomfortable with my problems.  I think I have made my opinion of myself being 'damaged goods' clear, and I was really concerned that Drew might think I was sicker than I was, or that on the inside I was an emotional roller coaster, neither of which are true.  The comforting hand on my shoulder combined with the "You know that I am here for you..."  sort of washed those trepidations away.  

I can't say I have had many break downs in the past but the few that I have occurred, have more or less been thrust on Lauren, whether or not she's ready for it.  I have shared with her the darkest, most painful times in life and she, while not sugar coating things, reassures me she isn't going anywhere.   I would much rather know, despite all my shortcomings that you'll be next to me to face whatever adversity comes my way... than be spoon fed some line about "its all going to be okay"... Because the truth is, if everything was going to be okay, some crazy third world terrorist would suffer through this, rather than me - but thats neither here nor there... 

I've ventured off topic a bit, but the point I was trying to get at goes back one of my Cardinal Cancer Rules... being, Live Normally.  I think if I sat around all day saying "what if" - I would turn into a hermit, like Nell,  doing absolutely nothing with me life.  I know what my fears are, and I face them and realize - it could be worse, and it is for some people, so sit down, shut up and stick me in the arm with that needle and let the poison flow... 

Now if you'll excuse me - I have a date with a needle...

Make your own luck

The livelihoods of professional gamblers are based on games of chance, a big if.  The whole tourism industry on a whole operates on a series of big ifs, for that matter the global economy functions in one large "what if" scenario.  Those that take chances are considering risk takers, and those that don't are conservative.

I

I feel like such a fool for thinking that people would judge me for something that was ultimately totally beyond my control.  In all honesty, it took someone who didn't know of my illnesses, to show me that it was possible for a person to look past my illness, and care about me.  I don't know if he knows how grateful I am to him for that, and I probably would never have the courage to tell him to his face, but it is the truth.  For someone who has been dealt a series of bad hands the past few years, I feel like Im a card away from a Royal Flush.  

The moral of the story is always be yourself.  I tried to change who I was and become an introvert that stopped taking risks... Its not me.  I tend to be a gambler, because even if it doesn't work out - at least I tried.

To tell the truth?

I can't say that I have ever really hidden my true personality to make it seem like I was some butch straight guy who liked 'beer and bitches'... Truth be told, I was very athletic which may have thrown a few people, buy my mannerisms and my interests have never really changed.   So, when the time came halfway through high school that I finally decided to start telling a few people that I was gay, it didn't really come as a surprise to any of them, in fact a majority of them said they had figured as much. Though I can understand why some people who are coming out get a little upset when the person they are telling responds with "i figured", to me, it wasn't like that because I never really hid it.   

Besides, now when I walked down the hall at school and someone cried out "faggot" my response, accompanied with a blank stare was "uh... yeah? can I help you?"  Taunting came to an immediate halt after I came out... 

As with most people, telling mom and dad was going to be the hardest and if I'm being completely honest with you, if  I had my way, I don't know if I would have ever told them.   I can't say that definitely, but when my mother stumbled across a letter that I had kept in my car (at age 16, whose contents made it clear I was dating another boy) the response was anything than positive.  I was confronted with "Is 'this' what you really want"... "Do you know what happens to people like this - They get AIDS and die"... This among a whole bourage of comments and questions.  I had to see a counselor to really determine if the homosexual lifestyle was what I wanted.  I think we all know, I was not a willing participant in those sessions and I pretty much told the crazy lady that I was gay, I was happy with it and I needed her to make my parents understand that and I'll never forget what my dad said to me that last counseling appointment when we were all together.  He said "We might not approve of your lifestyle, but in time we can learn to accept it"...

I assume you'd understand then my discomfort with telling them when I was seeing someone.  I knew if I did, though they might say "okay", on the inside it was making them loathe who I was even more.   So from that moment I made the conscious choice to not tell them.  I knew for a fact they knew my choice was concrete, and I knew it would always be the elephant in the room.  So for the next 10 years, I have never told them about someone I was dating, though in reality I havent dated anyone for almost 3.5 years... there just wasn't time between working full time and now being sick. 

If I had not had the diagnosis I had, and life had continued normally I can't really say I know what there opinion would be... but I wasn't afforded that luxury, instead I've had to put up one hell of a fight to continue to live. 

They have seen me lose my hair, my weight, my appetite, my self confidence and even my desire to be social... In essence they have watched me become lonely and I know that breaks there heart, because I think they realize now, that I have a finite amount of time here, be it 2 years or 20 years or even more - who knows, but I deserve to be happy, and they want me to be happy. 

And at almost 27 years old, I'm a full grown adult capable of making adult decisions, and I think if we all take a trip down memory lane we can all agree I have had to make some pretty serious life altering choices, more than most 27 year olds.   At this age, I should be able to be honest with my parents, our relationship today is as strong as it ever has been and I don't feel like hiding who I am anymore.   I want them to know who he is, and I want them to meet him and know that there is someone who cares about me enough to take all of me, with all my faults. 

So in my mind, I know they want me to be happy, and I know they trust my decisions and the more I rationalize it the "Tell them" side is chocked full of ammo as to why I should.  Then I have a throw back to the reaction when they found out I was gay at 16, not a pleasant one and I also think in their mind they may equate a relationship with sex.  Which, couldn't be farther from the truth.  It's about me finding someone I can care about and me not being lonely anymore. I could really care less about the physicality.  I think I forgot what it was like to get a kiss from someone you had feelings for, or to embrace someone... (ewww, two guys kissing... its actually pretty sexy, im not going to lie to you)

I guess I forget sometimes that as I have grown up, so have they but it still scares me.  I've talked to virtually all my friends about what they think I should do, and the consensus is the same, tell them, but its just one of those things that is easier said than done, and in actuality at I would be twenty seven years old telling my parents Im dating someone, for the first time. 

Given all I've been through, you'd think something like this would be a walk in the park... I just need to grow a pair apparently!

Thats in Cleveland right?

Im taking the guy I have been seeing to Cedar Point this weekend, which I might add, I am pretty excited about. He was a trooper and said he'd go to Kings Island a few weeks ago, so I figured that gives me free reign to drag him to any amusement park I see fit. I know we'll have a good time, and I'm really looking forward to getting to spend more time with him.

Excuse me, do I know you?

I come across some strange questions from people from time to time. I think naturally everyone is a little inquisitive when it comes to a topic they aren't all that familiar with, and as my life is more often than not - an open book, I generally don't mind answering peoples questions. So, for fun, I'll list a few (and their respective answers)

Do you have a port?

No, I do not. I receive all my chemotherapy through peripheral IV access.

Are you afraid of needles?

When I was little, petrified. Since all this has started, you sort of get numb to to the whole needle sticks, although those biopsy needles are a bitch. Its like being stabbed with a garden hose.

Has your hair fallen out?

Yes, three times. It comes out in big clumps.

Did your hair grow back a different color or texture, I heard that happens?

Not really, and the day my hair grows back red curls, I'll be getting a weave. It is a little thinner, but if you know me, I had really thick hair.

How much weight have you lost?

Seventy pounds

I heard your urine turns a funny color - is that true?

Yes, its actually neon orange for a few days.

I heard they have interesting nicknames for chemo - does yours have any?

The chemo Im on now, Taxol, does not. Doxirubricin, my former chemo was called "The Red Death"

Do you take a lot of pills?

Between 8-12 a day... just depending on the day.

Do you get sick easily?

I could...

And herein lies the topic of tonights Dancing in the Rain...

I had a lot of questions when I first started chemo, most of which couldn't be answered because they were forward looking questions about how I would react to treatment and the truth is, everyone is different. The one question I know I asked was "Since chemotherapy destroys white blood cells, and your immune system, will I be at risk to get sick easier." The answer was a simple "yes".

I take prophylaxis medications every day to help my body fight off things that, say you or any other 'normal' person, would be able to fight without thinking twice about. The truth of the matter is, a cold could kill me. So I was warned rather frankly, to be careful who Im around, and to know they aren't sick because I would be putting myself at an undue risk.

My life, up to that moment had been surrounded by thousands upon thousands of people I dont know. From teaching band and color guard and attending competitions, going to sporting events, my vacations to florida and other random amusement parks and more importantly - work. As part of the management staff at The Beach, I was constantly interacting with guests and staff members alike, and its not like the same guests come to the park each day. I guess the point is, I had been subjecting myself to who knows how many illnesses while I was undiagnosed. Im sure this didn't help the cause any either!

So after my diagnosis and having been informed I needed to watch where I go, I almost became a recluse. In that, I was petrified to leave my house because of the fear I was going to come across someone who had a cold, the flu or some other random illness that I would catch, not be able to fight off, and then die. Week after week after week I would stay in my house because I felt it was the only safe place I could be. (My family, after my diagnosis all were finishing any incomplete vaccinations for illnesses I would be most inclined to get.)

The first few times I left the house I was afraid to speak to people, afraid to even get close to them let alone look them in the face. It was when I had to go to Job and Family Services in downtown that I had my meltdown. Thanks to the hospital I was at, I didn't have to go through all the initial paperwork, I just had to meet my caseworker to verify my information and sign some papers. I walked into this building and if every homeless person in Dayton wasn't in the building, they were standing outside next to the fire in the garbage can or doing a drug deal in the parking lot. Not to mention the clientele of JFS isn't exactly what you would consider the most educated, or the most worldly. Don't get me wrong, there are definitely those that were "haves" that have fallen on rough times and become "have nots"... but it seemed to me like most of the people there, were abusing the system and nothing more than (forgive me) derelicts of society.

I had to wade through all these people and, to be frank... I don't know Shaquanda, and I certainly don't know her 14 children she has on leashes attached to her hand with freshly painted Lee press on nails. Nor do I know what these kids might be carrying, I mean illness, not like packing heat... Although, it wouldn't surprise me - bust a cap in me, then cough on me... its a lose lose for ole' Ryan.

As soon as I saw this, I had to leave. I couldn't put myself at that kind of risk, right?

I went home, and sat and thought about how I was going to handle this situation and get to the meeting I needed to attend to start my benefits. The more I thought about it, I felt like what a pain it was that I had to change how I was living my life. It was then that I decided even though I was sick, I was going to live my life normally.

I don't believe in pity parties. I don't believe in sympathy. Things happen, and how you deal with those situations determines your quality of life. If you get bogged down every time life throws you a curve ball, when do you have time to live life?

Its funny to read the news update on Facebook, and how many people have these status updates that allude to how their day couldn't get any worse and how they have it pretty bad. Not being able to find your car keys is definitely a reason to look into physician assisted suicide in my book... But seriously, I find myself reading these updates and thinking - "is it really that big a deal to get so bent out shape over?"

People ask me, "how do you handle your diagnosis" - my answer is always the same "I've taken it in stride and with a side of humor". I won't lie, I have had some very serious, very scary, life threatening times so far in my journey with cancer, but I know there are so many more people that are more worse off than I am. I figure, if there is a higher power, I've been afforded a second, and even a third chance at life and I'm not about to waste it with self deprecating behaviors. Things happen... move on.

I ended up going back to the Job and Family Services office later in the week, filled out my paper work and went home and much to my surprise, I didn't die from a cold or a shooting. Ive been to Kings Island, Cedar Point, Lake Cumberland, the mall - lots of places and have been fortunate enough to not get sick. Don't get me wrong, if I do see an ill person I generally steer clear of them, but I have been extremely fortunate, no doubt.

How much happier would your life be if you decided to not let the curve balls life throws your way make your happiness waver? What would happen if you just took it in stride, addressed it, and moved on?

I saw this quote from Dr. Seuss today that inspired my little blog tonight, and it's certainly worth sharing...

Dont cry because its over. Smile because it happened.

The stage is set...

Not many things frighten me. Well, thats a complete lie, Im a total baby when it comes to scary movies, haunted houses and yes, even the dark. But thats a different type of frighten than the one I mean to talk about. Getting stuck with needles, what might happen to me, and even the complete unknown don't particularly bother me. But like every cancer patient, roughly two times a year we get to go in to the hospital for a battery of tests to judge how the cancer is, or is not progressing. Then, based on those scans, we map out or course of action for the next battery of treatment, hence why these scans are referred to as 'staging scans'.

These scans scare me, the haunt me, they worry me. Everyone fighting cancer, and everyone who roots for a person fighting cancer hopes and almost assumes that chemotherapy and radiation treatments work. Well you know what they say about people who assume... yes thats right - that they have sexy asses... But in seriousness, I have found over the course of my treatment that naivete' of 'assuming' its working can be a slippery slope from a patients perspective and from the oncologist point of view as well.

It was just over 13 months ago when my specialist at The James, Dr. Biaocchi, (Bi-yolk-ee) had come to the conclusion that since I clinically presented in such great conditions and my current staging scans showed so much improvement we should suspend chemotherapy treatments and come back to the local Dayton oncologist in 3 months to get a check up.

I was elated, overjoyed, thrilled to say the least. I was not only going to have the opportunity to have a normal summer but the chance to be normal, a feeling I had lost what seemed like so long ago. So summer started, and I said my goodbyes to the Oncology department in Dayton for a few months wishing them a happy summer and that I would see them in a few months. It seemed like all the hell I had gone through at The James, the suffering, the pain and the tears had actually paid off in the long run. It was that day that I was so glad to not end my fight months prior. Unfortunately for everyone, we all were a little premature in our celebrations. I didn't make it to the end of summer before being admitted back in to both hospitals.

It turns out the cancer was still actively growing and the good that had come of my stay in Columbus originally, was virtually all for nothing. The cancer had invaded my lung tissues again all the while I was thinking my body was strong enough to fight on its own. I was wrong.

I mention this only because for one, Im petrified of a recommendation to take me off chemo, at least when Im healthy enough, because in my mind the cancer is always growing. But also, the disappointment that comes with the result of "stable", meaning little if any change. I don't think I can express how disheartening it is to know you have put your body, internally, through hell and back and pushing it to its absolute limits for the hope of shrinking of these tumors/cancer cells to find out that 6 months of chemotherapy resulted in little if any improvement. To me, someone who has pretty thick skin and prefers straight shooters (well, actually, I don't prefer straights, or shooters... 2 points for Drew)... getting that result is fairly devastating, because I start playing "what if" in my head subconsciously.

Don't get me wrong, I would much rather have a "stable" result than one of "increased masses, little to no improvement" but we assume chemo will work and, I guess, it is.

I once asked my Oncologist in Dayton, Dr. Nanda - "If the scans continue to come back stable, why don't we increase the chemotherapy - or, moreover, how do you calculate how much to give me" ... Her answer gave me reason to pause...

She said... "Well, you're on the maximum dose. Essentially we figure out how much chemotherapy we can give you without killing you and that's what you get"

Thats a little unnerving

So the stage is set, for August 12th I think, and we always hope for good news and I've generally been fortunate to get that good news... So heres hoping!

When 'thanks' is not enough

When do you say 'thanks'? I say it all the time... When Im at a restaurant and the server brings my food, when someone passes the salt, when the random old lady takes your picture at Kings Island, when the douche bag cuts you off on the highway (followed by 'prick' and a honk with a finger), when you get your hair cut, when someone yells "faggot" out of a moving vehicle, especially when the pharmacist gives me my refills!

Thank you, or thanks, is the simplest expression of gratitude or appreciation so you would think that simple phrase would be enough when wanting to express the aforementioned. Its simplicity is also its problem, at least for me. How do you express your gratitude to the person, or persons, who were responsible for saving your life. Very few of us will ever know what it feels like to have your life saved, and even fewer to know what its like to save a life. Herein lies my dilemma...

For the longest time I have toiled over how to express my gratitude to my Oncologist, Dr. Nanda. To me, quite frankly, she is the reason why I am still living. She's just a few years older than me, and someone I find very easy to talk to. I believe she has a vested interest in what happens to me and she has gone above and beyond what her responsibilities as my Oncologist require. I trust her, and I trust her opinion more than I trust any other physician I have come into contact over the past two years. If you think about that for a second, that's a fairly high number. I know she finds my case interesting because she used me as a case study, which of course I was flattered by, though there was no photo shoot for me to be on the cover which was slightly disappointing. She is the one who sat with me and convinced me that I had to go to Ohio State not only the first time, but knowing my fear of going back and knowing it was where I could get the treatment I needed, convinced me to go back the second time. I adamantly refused getting a bone marrow biopsy because I knew how painful they could be and only agreed, after much persuasion from my mother, if Dr. Nanda would perform the procedure. There have been countless procedures and countless times where she has explained to me in the kindest way, yet most honest way, that I needed to do said procedure/test/etc. but I finally realized how special she was, and how much she really did care about me was when I transferred back to Grandview from The James (the second time i was in columbus) and just out of the blue the second day I was back, she walked in to my room and said "I heard you were back from Columbus and I wanted to come say hi and see how you were doing". She wasn't there for any clinical reason, just to say hi.

I dont generally like to be visited in the hospital, I know how I look when Im there, and its embarrassing enough wearing an ass-less gown that is definitely not Abercrombie branded...

(Im convinced that if Abercrombie and Fitch made a line of hospital gowns - people would flock to them like bees to honey... but i digress) As much as I don't like being visited, her brief visit that day stood out in my mind because it made me feel like Im more than just a patient #395819 who presented with symptoms x,y,z. I was Ryan, I was very sick and I knew from that moment I could trust her to fight for what was best for me no matter what. And she has...

She has gone to bat for me more times than I'm sure I even realize. If you knew some of the other doctors on my case that I see semi-regularly, you would know how intimidating they can be and I certainly wouldn't want to get in an argument with them yet I know she stands her ground and stands up for whats ultimately best for me.

I know that my case is fairly serious, even though sometimes I act though its not, but I have said from the beginning I hope my case can help the doctors I see learn more about my illnesses and in turn be able to forego some of the stumbles we've had in my treatment. I think it's safe to say my case has increased her knowledge with regards to my specific cancer.

She has my unwavering trust, my total admiration and above all, my utmost respect. She is a true professional and I will always be loyal to her. So how do I thank her? I think by letting her read this might be a start.

But there is another person I can't just thank. A friend in the truest sense of the word. To be honest, she can't be my friend when she's family. This person comforted my parents while they were watching their child lay on a table with a tube down his throat, a tube down his nose, machines breathing for him and hoping and praying he would walk out of this hospital. As one of the most emotional individuals I know, she has the courage of 10,000 lions. She came and saw me everyday I was intubated, driving more than an hour each way to get to spend at most fifteen minutes with me, to just hold my hand and talk to me knowing I may or may not have heard her. Knowing that this could be goodbye. After waking up she still visited almost daily, bringing me all sorts of snacks and meals, sending me every card that makes a sound when you open it, watching TV with me and even helping me clean myself after some of my more humiliating times. She did for me when I could not do for myself. What I regret most are the times the drugs I would be on caused me to say hurtful things that I know caused her pain yet, she looked past it and still came back. She's my motivation, she's my strength, she loves me unconditionally through all my faults and no dollar amount could ever repay her for what she has done for not only me, but my family. To say my mother is stoic is an understatement and she keeps her emotions in check, but for my mom to be able to use this friends shoulder to cry on when things weren't looking the best for me and having essentially made up my mind to end my fight - again, is priceless.

Our relationship is more than unique. Its beyond that of a friend, a confidant, a best friend or even le' fag hag... She is loyal to a fault, as hard as it was for her to come see me in some of my worst times, she was there knowing it was going to be painful. Driving herself into massive debt to be there for me. Spending countless hours reminding me that I was going to be okay and making me as comfortable as I could be. Reminding me despite everything I'd gone through, I was still Ryan, and still normal and still had a life to live. I know she's learned a lot from me, but I don't think she understands what a gift she has been to me. Through her I've gained the extended family I never had and the truth is - if I could be half the person she is, have half the integrity, the loyalty and the love she has I think I'd be pretty fortunate.

I mean this from the bottom of my heart:

You are my partner in crime, my companion, my biggest support. I trust you, I admire you and above all you have my unwavering respect . Lauren McMullen, I love you more than you could ever know, and you will be with me always.

So to Dr. Nanda and Lauren....

Thanks

HIPAA

(I wasn't going to write about this tonight, but the more I thought about it, Id save my original topic for my next entry... this topic though has been bugging me so why not briefly write about it)

One thing I am not, is shy and I tend to not become embarrassed easily. I am who I am, and I own it knowing full well somewhere there is a person who probably doesn't care for me for their own reasons to which I respond - to each his own. I don't hide the fact I have cancer or the trials and tribulations that have accompanied that diagnosis. Though I don't hide it, I also don't broadcast it for everyone to know. The people who know, are people who I trust won't judge me for one, but secondly I know won't gossip about it behind my back - these people respect my privacy.

Courtesy of the Health Insurance Portability and Accountability Act of 1996, anyone working on my case from a hospital standpoint cannot divulge virtually anything about me and why I am at the hospital. For nothing more than to protect patients privacy. Its a great thing to be able to go to your healthcare provider and be able to be perfectly honest with he or she and get the appropriate care in a timely manner. How would you feel if you couldn't trust your doctor, nurse or other tech/staff member because they might gossip about your diagnosis behind your back? How honest would you be with these people? Would you lose trust in the healthcare system altogether? It might sound silly, but the truth is, there are people who will refuse treatment because their trust has been abused, and their story has been used for nothing more than playground gossip.

Now, like I said, Im not embarrassed by my diagnosis and I don't think cancer is something to be embarrassed about but if you pause for a second and think... Im fairly certain you could think of at least five diagnoses that could be considered embarrassing that you would want kept private.

So seriously - think of five diagnoses that could be embarrassing for you and then lets say, for the sake of argument, you have been diagnosed with the worst of the five.

A good friend of mine who was recently diagnosed with one such illness trusted me enough to tell me about his condition and conveyed how important it was that it remain private but that he wanted me to know and that furthermore I was one of only three people who knew. This friend called me a few weeks ago, sounding bewildered and disconcerted at the same time, telling me one of his friends with whom he had not shared his recent diagnosis had essentially asked if he had plans to start treatment. After a somewhat brief interrogation, it came to light my friends physician, who happens to be "younger" in age had been telling people about his patients who had 'interesting' cases and using names.

I have always been a member in the school of thought that respect for a friend means keeping private and confidential matters just that - confidential. Trust is probably the biggest aspect you can have in any relationship, be it with a partner, a friend or in this case especially, a physician. Without trust what do you have? Not much to me.

Please don't take away my right to tell who I want, when I want, what I want. If I choose to keep certain things private, I do so because I choose to, and everyone should be afforded that luxury. I'm not sure what course of action I would take should my trust have been abused like my friends has been, and I hope I never have to even think about that happening. Needless to say, when I heard about this all I could think of was - I hope I never have my privacy invalidated and treated like I'm a water cooler gossip topic.

I suppose the point of my entry tonight is trust is the most important aspect of a relationship...

Always grateful, never disrespectful

I guess this will be my first blog topic, since I don't really count an introduction and a copy from facbeook. So here goes...

Having been raised by parents in the medical profession, I have always had a somewhat unique view of patients, nurses and doctors and the relationships they have with each other. In the ER it seems there are those who are genuinely sick and need the help, there are those who use the ER as their family physician and then their are the frequent fliers of the world who come in to try to get a quick drug fix.

I wouldn't say the hospital, Grandview, my mother worked at when I was younger was "inner city" but it is in the downtown area and definitely most of the clientele are from the western part of town and I think its fair to say most that come through the ER there are either Self Pay or Medicaid/Medicare. Courtesy of the Medicaid act though, you can't be turned away for service and they have to see you regardless of your ability to pay which unfortunately leads to people getting the idea they can use the ER as a doctors office that just happens to be open 24 hours a day. Moving on...

I happened to be at a rather interesting point in my life/career when I was diagnosed, I had just dropped off my parents health insurance plan but had not yet been able to enroll in insurance at my employer, though it was right around the corner, so in essence I was no more than a Self Pay who just found out he had cancer. Lets be real for a hot second, cancer isn't cheap, a z-pack doesn't make it go away. So to make a long, yet fairly painless story, short, I applied for medicaid the first day of my admission, so when it was approved it would cover everything, and thus far has. People may trash the system, and talk about how its so slow and this that and the other thing, but I tend to think the system is in place to be used by people like me. Since my diagnosis came with a 'total disability' stamp on it too, I was unable to work and medicaid was what I qualified for.

Now before I continue, you must realize, in case you didn't already know - Medicaid "insurance" is not like Anthem, UHC, Aetna, Humana etc. Medicaid pays literally pennies on every dollar billed to the hospital. So outside of a hospital, a doctors office that takes medicaid really sees very little reimbursement for their services.

With that in mind, growing up the way I did around the hospital and seeing how the nurses and and doctors are treated by the patients at times I swore I would never bitch or complain about the care I receive especially since I know that they are getting such little money in return for the services rendered. People tell me it shouldn't matter, but in my mind, it does to an extent. I do have at least one ace in my back pocket, since most of the people at Grandview know my mother I get the benefit of the doubt most of the time, but regardless, when I was at the James I never complained. I am always polite, and I try to not irritate the nursing staff or other techs that are there to do there job, which is to help me. The reality of the situation is, its a job, and like it or not, they are helping you get better. The common misconception though, I think is the word nurse being spelled M-A-I-D. You have to 'do' for yourself. Its not a day spa, and there is no mani-pedi department.

It astounds me how rude patients can be to the people who are trying to help them heal. I equate that to nothing more than biting the hand that feeds you.

For instance, when I first started chemotherapy in December of 2008, I was in the big treatment room and the one nurse who works the whole oncology clinic at Grandview, and who is a saint in my eyes, was delivering lunch to those of us who were receiving treatment that given day. (In case you weren't aware its an all day affair) . I generally don't eat lunch provided by the hospital, something about a rubbery piece of "chicken" breast, jello and steamed veggies just doesn't do it for me, so I politely decline. After the nurse had left though, this woman sitting across from me had the audacity to complain how the hospital was cheating her out of a full meal and the meals get smaller and smaller every time she comes for treatment and furthermore, she thought she was going to write a complaint letter. Now herein lies the problem... Its a free meal provided by the hospital, so the appropriate response is "thank you", not give me more. Additionally you know she was either a self pay, or medicaid so she isn't actually paying the thousands of dollars for her chemo, let alone the 2.99 for her meal she would have been charged. Add to that the fact she had earlier in the day treated the rest of the patients to her lip smacking for 15 minutes while she cleaned the meat off a couple chicken legs and a thigh from KFC she brought in from the night before.

I wanted to reach across the room and hit her upside the head and ask her if she even realized how ungrateful she was being. Im pretty sure there are homeless people on the street corner who would work a full day of labor for that meal but yet she's entitled to something more. That sense of entitlement is one of the most infuriating attributes in today's society. Everybody deserves more and more... But then I realized the actuality of her writing a letter to complain would be one giant 'failure to launch' ... and heres why...

In addition to her ignorance, she couldn't compose a complete sentence if her life depended on it. It is doubtful she knew the address to the hospital, and lastly, would you take a letter written in broken english with crayon seriously? No? Me either.

The point is, I've gone through a lot of painful procedures. I have had giant biopsy needles shoved into my lungs on more than 5 occasions, I have had biopsies that had to be repeated because of poor samples, Ive had my bones drilled into to take marrow samples from, Ive had IV's started more times than I can count, Ive had tubes in every hole in my body - yes, ive been plumbed like an apartment building... (now thats a pretty picture, no?) Ive been poked, prodded, jabbed and jarred... forced to do things I didn't want to do, forced to make decisions I didn't want to make and I've even been forgot about by the nursing staff from time to time, because they were so busy. Yet the truth is always the same, its to help me get better and unfortunately a lot of people lose sight of that very quickly when placed in a hospital scenario.

I don't take the mentality of 'I am a somebody, and will get what I want', I've always been courteous and exceptionally grateful for the care I've received, I've always done what was asked of me and what did I get out of it? My life was saved... on more than one occasion. The ability to keep living is priceless in my book.

My health in a nutshell

I recently posted this on my facebook as a note to share my health with all the people who had been thoughtful enough to send me at least a kind word or two over the past two years. I don't hide what I've been through, but I try not to make a big fuss over it because I know there are people, and one comes instantly to mind, who have had much harder battles than I have. But given the fact I have now 'almost died' 3 times I figured I owed these folks an honest rundown of what I have been through. So this is a copy from Facebook... not too long...

After my initial diagnosis and 2 week stint at Grandview in Dayton I started on chemotherapy and all sorts of other drugs to help me not get silly illnesses (prophylaxis medications). I felt 'good' for a few months and then mid-March I started to develop a cough that became increasingly more prevalent and persistent, additionally my appetite waned and stamina dwindled. On the inside, I knew my body was failing but couldn't quite put a nail on the 'why' so I chocked it up to being side effects from chemo. I was attending a chemo session before I was to leave for a vacation in Las Vegas, could barely walk into the hospital without passing out and naturally I was admitted into the MICU at Grandview while the oncologists discovered the chemotherapy had internally not been as successful as they originally thought and the cancer had spread into over 80 tumors filling my lungs. Unsure as to what course of action to take I was transferred to The Ohio State University Medical Center's Arthur G. James Cancer Center d/b/a The James (or the Jimmy). The story from here goes down hill. I really only remember the first night, when I started to become unable to breathe for myself.
- The next part is all second hand as I dont remember any of this -

It was explained to myself as well as my family that because of the rapid progression of the cancer I could chose to be intubated, sedated, and undergo a rigorous radiation treatment regime set up by my specialist at The James, or, I could chose to end my fight in which the physicians promised me they would make me comfortable until I was unable to fight any longer. They explained if I did chose option A, but they were unable to successfully intubate me or if for whatever reason problems occurred, a 're-intubation' would be extremely difficult and nearly impossible given the damage to my throat. With this information I signed a DNR (do notresuscitate) order for the duration of my sedation which lasted somewhere between 12-14 days) Luckily I made it, and the radiation diminished the tumors by over 65-70 percent and my chemotherapy was switched to a more aggressive version.

I woke up not knowing what had happened or the extreme hell I had put my family and very, very select friends through. My legs had atrophied and my arms could barely move. My hair had fallen completely out and I hadnt shaved in 2 weeks. I looked like I had just won Survivor. How humbling to be fed by your parents at age 25 right? So I spent another 6 weeks at The James before being transferred back to grandview for another 6 week stay in their inpatient rehab unit so I could learn to walk again and function. Even after leaving I was only able to walk on my own for, maybe, 40-50 feet. But as time went on I regained my strength and my stamina. Unfortunately the lung tissue that died with the tumors I wont get back, so I have a somewhat 'limited' lung capacity and walking up more than a few flights of stairs causes me to lose my breath quickly.

Last summer was wonderful after I was released from outpatient therapy. I took several trips to Cedar Point, and of course many to Kings Island then we rescheduled our trip to Vegas for late August which was wonderful. I also was so glad I was able to spend a good chunk of time at Lake Cumberland as well. The part I havent mentioned was that after a visit to my specialist at OSU he decided since I had shrunk the tumors so much, and responded so well during rehab etc I could stop chemotherapy. Could I be so lucky? No.

Mid September rolls around and I start to develop more coughing and fatigue but the inability to sleep - constant restlessness is fantastic incase you were curious. By the end of September I was admitted back to the MICU / SICU at Grandview for 2 weeks while my oncologists strategized what to do since the tumors were again growing larger. So it was decided again, to send me to The James, where I stayed for 2.5 weeks undergoing an extensive battery of tests and biopsies, including 2 open chest biopsies to determine why the cancer was so aggressive. I was discharged and sent home from Columbus with a little oxygen machine to help me get my hemoglobin back to an acceptable range.

Six days after getting back to my home my mother came home to find me in my bed unresponsive and barely breathing... not my first ambulance ride but certainly the first time I had the honor of telling the EMT if she tried to intubate me in the squad I would pimp slap her. From the ER at grandview I spent the next 7 weeks bouncing around all the ICU floors the hospital has to offer while being only one step away from being intubated again since my lungs were just unable to supply my body with enough oxygen. If you know what a high flow oxygen therapy is, thats what i was on. The little doo-dad they shove in your nose isnt the regualr cannula its one that forces your nostrils open as big as they go and then, quite literally, forces air down your throat. Six liters is considered "high" for a regular patient, at max the machine i was on was set at 65. I still got chemo as an inpatient and as such with the high flow O2 my lungs started to rebound yet again and I was finally able to go home.

Thanksgiving meals in the hospital - not so yummy in case anyone was curious about that too... I think I had jello and some reheated skyline.

SO - since then i havent been back to the hospital in an inpatient capacity. I still get chemotherapy every 3 weeks and the effects on me have become more minimal as the sessions continue. I just 'celebrated' my 35th chemo session this past week. I still get tired the day of treatment, but as far as nausea and vomiting its very minimal. My stamina is improving and every day truly does get better.

As far as where do we go from here... Is the cancer better? truthfully, maybe a little. Is it worse? No... so we're currently stable and the course of action for now is to just continue the chemo and let my body continue to fight it and that's what we're doing. 9 months without a hospital stay is pretty good all things considered. I think at one point I counted 165 days as an inpatient in 2009, but 0 in 2010 :-) If you were wondering how much this has cost, (its not a rude question btw, and i dont mind talking about it) - My medical bills are somewhere in the neighborhood of 2.25 - 2.5 million dollars... But im not a self pay so all is well!

That was definitely long - and there are obviously many more details I could get into but thats the important stuff about whats happened health wise with me since Jan 09.

Dancing in the Rain...

At the advice of a friend on Facebook, I decided that I would give this blogging concept a whirl.

For those of you who may stumble across my writings, or at most times ramblings, who don't know me, let me introduce myself to you. My name is Ryan Aubin, I am 26 years old and reside in Dayton, OH. I was raised in a middle class, catholic family whose parents have somewhat conservative views with the occasional liberal hiccup. At a younger age I was heavily into sports, be it baseball, football, basketball or track, my life was fairly consumed with athletic activity yet that stopped in high school when I devoted my time exclusively to music. I had been playing the piano since age 5, and picked up the trumpet early in grade school. Music was always my truest passion and I devoted most of my energy to that arena. Music has taken me places I never thought I would have the opportunity to go, and given me the ability to have experiences I thought were not possible for someone from Dayton, OH to have. Somewhat cliche' I know. I went to Wright State University and majored in Marketing / Advertising with a minor in English. How can you advertise if you can't spell and know the difference between to, too and two, or they're their and there.

My father is retired from the State of Ohio Department of Transportation and currently works as a Radiology Tech at a local hospital and my mother is a Doctor of Nursing Practice. Shes gone from clinical manager to seeing patients in the ER to now teaching and moonlighting in an after hours clinic for a large practice in Dayton. I have one sister who is younger than I am, Jamie, an art major at Wright State as well, she will graduate this winter. I think at times she is lost and perhaps looking for her way. Lastly, I have a dog, Bruno. He is a 10 month old Yellow Lab with a lot of spunk and two pesky little nuts that need be chopped off post haste.

I enjoy the outdoors, I grew up at Lake Cumberland tubing, skiing, wakeboarding. I enjoy traveling and amusement parks, mainly just for the little adrenaline rushes they provide. I don't like scary movies, I do like to read virtually anything as long as its not some self help crap. Help me help you by not making me read your prophetic words of wisdom you wrote while probably higher than a kite. I don't know if I would say I am a picky eater, but I am fairly plain in what I like. I don't usually venture off the beaten path too often.

I feel extremely fortunate to have the friends I do. Plentiful? Hardly. But its about quality not quantity right? Except when it comes to dollar bills, I'll take a thousand scuzzy dollar bills over one crisp one any day. I think, if i really thought hard about it, I have about 5 close friends, 3 of which live close to me. As far as my relationship status goes, I have been dating a guy who is a couple years younger than I am, Drew, for a month now. I think he's pretty special.

I have cancer.

I'm not "A" cancer, I'm actually a Libra but thats neither here nor there. I was diagnosed on December 2, 2008. Its strange because a lot of people Ive talked to can remember the exact date they were diagnosed, although I can totally understand why, it's a fairly earth shattering day in your life to not remember. The cancer I have is in my lungs right now and is relatively contained yet it fills those lungs with what seems like countless tumors. You never realize how important those puppies are until they aren't working right. Not being able to catch your breath without the aid of a machine can be a terrorizing thought. The name of the cancer isn't important, just the what and the where.

I had thought about blogging for a while, before actually taking Alex's advice and starting this but I thought I really wouldn't have anything to write about. The strange thing is, the more I thought about I do have things to say and I would like to share my experiences and thoughts about what has happened over the past few years.

The only thing that has managed to keep me sane through all this turmoil, has been the ability to laugh at what is going on. I have had so many people tell me, including many of my doctors, 'Ryan, you're one of the most upbeat patients I've ever had given all you've been through'. And my thought is this... We all have a finite time on this earth, and we do what we do, and make of it what we will. I happen to know my time could potentially be shorter than most, so why then would I sit in a corner and boo-hoo it and have a pity party for myself? I find pity and other self deprecating behaviors to be not only a ploy for attention, but a waste of time. Instead I laugh and do what I can while I still can because you never know when you won't be able to.

Dancing in the Rain??? Strange title perhaps, the only time I personally would dance in the Rain is if it were raining men, but thats me. I really racked my brain trying to think of a name for this blog, Alex has a cute name for his blog (which Alex, I really do enjoy your blog, its going to make a great movie one day). But I didn't want to be that typical "screw you cancer"or "stickin it to cancer" or even better "keeping up the fight"... Just too typical and mundane. Then I remembered this poem I read at The James... (The James is short for The Arthur G. James Cancer Hospital at The Ohio State University Medical Center) and ever since I read it, it stuck with me, and its on my facebook and sometimes my status so I figure why not. The poem isn't super long, but it definitely relates to my relationship I've had with cancer so to close out this first blog I'll leave you with it...

There once was a woman who woke up one morning,
looked in the mirror,
and noticed she had only three hairs on her head.
'Well', she said, 'I think I'll braid my hair today.'

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had
only two hairs on her head.
'H-M-M', she said, 'I think I'll part my hair down the middle today'.

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and noticed that she
had only one hair on her head.
'Well' she said, ' today I'm going to wear my hair in a pony tail.'

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and noticed that there
wasn't a single hair on her head.
'YAY'! she exclaimed.

'I dont have to fix my hair today!'

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

Love simply, Love generously, Care deeply, speak kindly

Life isn't about waiting for the storm to pass...

Its about learning to dance in the rain.