The countdown is on...

Holy smokes... I don't write on my blog as much as I used to, but perhaps that will change now that summer has officially ended.   Ultimately when I think of the reason I started writing the blog, it was to document my experiences with my illness, note the trials and tribulations that come with it and show that despite having a seemingly unending string of bad news come at you, life does go on. 

So here I am, October 2, 2012, at 29 years of age.  If you would have told me, 4 years ago today, that I'd be laying in my bed, listening to my dog snore and rain drops crash against the roof while taking clear deep breaths through a set of lungs that repeatedly failed me, with a full head of hair no less,  I would not have believed you.  

I've never truly had a surreal feeling until this birthday.  This is the first birthday I have had without being on chemotherapy and when I think back to some of the things I've gone through I find myself asking 'did that really happen to me'?  I occasionally will forget how far I've come.  Why?  I don't know.  

I find myself still very realistic about what my future holds, but in the same breath, cautiously optimistic.   I've said before that I have lived more in the past 4 years than I did the 25 before it and I still find that statement to be true.  

I never thought I would see 29 years of age, but you can bet your bottom dollar that I'm thrilled to experience it.  

Year 29 is going to be so wonderful to me, I can already tell.   I get to participate in two of my very best friends weddings,  I get to look forward to another holiday season in a few months, Im excited to watch my body transform back into what it used to be (aka, get my muscles back), I get to look forward to another whole summer of fun lake memories concluding with Lake-Cumberland-Houseboat-extravaganza 2013 - and so much more.  

October 1, 2012 was a reminder to me, of all the people I have in my life who have loved me and cared about me through the happy times and especially the scary.  

I know I've mentioned previously that I have a few irrational fears, things that people might consider silly, and I think today would be a good time to share one of them and why it's so irrational... 


Within a day or two of getting my diagnosis, and having the severity of the situation settle in, I found myself laying in my hospital bed staying up at night fearing that when the time came, and my body finally let go to life, would anyone come to my funeral and who would carry my body to wherever I would end up.   No lie, this is something that truly bothered me for a very very long time.  However, today is the perfect example as to why I no longer stay up at night and ponder this question.  I was flooded with messages today wishing me a happy birthday.  These were the simplest messages that meant the world to me.  For someone who doesn't consider themselves to have a large base of friends, I sure do have a lot of people who care enough to wish me a happy birthday, and there is something to be said for that. 

So here is to year 29, because the countdown is on until year 30... 

The Hypochondriacs Guide to Life. And Death.

Im at Lake Cumberland for 8 days and I always find myself getting caught up in some good books when I'm down here.  For some reason I can sit on the porch swing and read for hours, sit on the boat and read for hours, lay on the cabin floor... and read for hours.  For whatever reason,  Lake Cumberland makes me want to read.

So I came down with Justin, Jacob and Megan and they left Thursday morning to go back to Ohio.  My mom didn't get here until later that night so after I acclimated myself with all the news about the Supreme Court's healthcare ruling (foreshadowing for another blog entry... dun dun dun...)  I got the iBook store and this was a recommended title for me.

At first I chuckled because I thought to myself: "how dare iPad call me a hype!" but after reading the synopsis I had to download it, and at $10.00 it was just the right price, and the right length.

The book itself was funny and witty yet really discussed how the hypochondriac mind works.  It was an interesting read for me, being a person with what some would call "major health problems".   As someone who has faced death many times I can tell you I was annoyed when thinking someone would just "want" to be sick.   The worst part about it is that at some point in the hypes life, they really will be sick with something and no one will believe them because its essentially a "boy who cried wolf" scenario.

Ultimately these people are mentally ill and I am respectful of that, but it doesn't change the fact that for those of us who have suffered immense pain in our lives because of illness and tried, with every fiber of our being, to regain a semblance of health - that it is a hard pill to swallow.

I think its fair to say that should any of these people ever come down with something even a fraction as bad as what I've had to deal with, they would change their tune immediately.  But I could be wrong, who knows?

The strangest things get me off on a tangent, and I loved this book and I highly recommend it but I still would trade health situations with any one of those "alleged ill" any day of the week.

I'll leave you with this quote from the book that had me in stitches.... (I'm going to do my best at remembering how it went)

"... Mr. or Miss. Hypochondriac, when you become 'sick' with one of your same four or five undiagnosable maladies for the seventy-fifth time this year and feel the need to tell everyone you come in contact about it to garner sympathy, please know this:  I will catch your fictitious disease, mimic your fictitious symptoms, create a fictitious receipt for medicine to cure said fictitious disease and then subsequently demand, most non-fictitiously, to be reimbursed for my expenses.  Because, ultimately, if I am going to have to listen about it, I might as well profit off of it."  


LOLOLOLOL!!!!!

As always... stay healthy, and stay happy :-)

Your book is four months past due...

I can't help but think how long its been since I've blogged last, and how I've been well overdue for an update.   I have intended on sitting down and writing several updates, but as we all know, the road to hell is paved with good intentions...

I thought for a long time I wouldn't have anything to write about since the discontinuation of treatment all those months ago, yet here I am on June the sixth and can clearly say I was mistaken.  I would go so far as to say not only do I have plenty of material to write about, I would have a surplus.  The past few days I've been trying to figure out the best way to group the experiences together so it ultimately makes the most sense.  A good share of my blog has been filled with speculation and forward looking statements about what my future holds, so now having this large window of open space to fill retrospectively it only makes sense to go in a chronological order.

When I last blogged and hit the last period in the last sentence of the last paragraph, I thought I wouldn't write another entry until I was forced back into treatment.  My how things change...

Ending treatment was not an earth shattering moment for me, physically.

The emotional part, that is another story...

If you've been a reader of my entries, this one being the seventieth I might add, you know that my 'job' has been to "save my life".   I micromanaged every facet of my treatment plan, doctors visits, chemotherapy schedules, insurance policy renewals etc.  It would be fair to say that a large portion of my time was enveloped by illness related activities, so when the time came and treatment was discontinued... I didn't know what to do.

I, quite literally, had nothing to do but sit.  It was in the middle of the winter and I had nothing to do but wake up, and go to sleep.   I never had felt like a spectator at life more, than this past winter.   So as the days went by, I slept longer and longer, became more and more of a night owl and fell into this pseudo-anti-social behavior that was definitely "not the look".

It only was at a visit to Dr. Nanda that she suggested that I might be depressed.  Before I continue, I don't mean "oh god I'm going to jump off a bridge" depressed, more like "i don't know what to do with myself so the coping mechanism is to sleep" kind of depressed.  I must clarify, in no way was I upset or sad etc.  It was like a light went off above my head, because up until that point I never put it all together, but yet upon listening to her, it made perfect sense.

I finally realized that I had to be proactive in making myself feel better, because I had come way to far to fall into a reclusive hermit.   Since I can't have a full time job for a variety of reasons which I'm sure I've talked about before,  I decided the best thing for me to do, was to go back to Wright State University.   In addition to school, I joined a gym as well and the combination of these two activities provided me with a new "job".  The regularity of the schedule and the activities themselves transformed me almost overnight.

I started feeling better, my sleep schedule got back on track and I really felt from that point on - that things were going to be great for me.... And as of this writing, they are!

You know... I don't know what the future holds for me, I don't profess to either.  But I do know this, I am going to do everything in my power to live the most normal and happy life I can, until i can't.  

I can't tell you how awful it felt to just lay around the house and do nothing.  It reminded me of the times when I was a prisoner in my own home because of my illness.   I refused to succumb to it then, and I refused to let it take me down this most recent time.    Who would want to be sick and spend days just laying in bed always coming down with an ailment that prevented them from living their life, or worse, sleep their life away?   I refused to be lumped into some category like that.

In any event...

Lots more entries will be on the way... The first 6 months of 2012 have been great so far, and I need to catch up with documenting them!

Stay tuned!

Fool me once...

Recently I've been presented with an interesting opportunity to reflect on some choices I've made and if those choices, in hindsight, were appropriate. 

At the start of 2011 I was in a relationship with someone.  As time wore on, it became clear this person was not exactly the person he portrayed upon our first meeting.  Normally I don't just jump head first into relationships, I like to get to know the person before attaching the label so when the label is slapped on, nothing really changes.  Against my better judgement though, I followed my heart rather than my head and jumped in head first.  This person slowly started to try to manipulate situations and things I'd said to make me look like a bad person.  This person was constantly a victim, the world was out to get him and he was simply helpless.  There was never an ounce of accountability on his part.  This person decided that who I was, was not what he wanted and decided it was appropriate to change me until I fit his mold of what an "acceptable partner" would be.  Again, against my better judgement, I felt myself slowly starting to change small parts of myself in order to please him, the slightest idiosyncrasies were adjusting.   I was becoming someone else, someone I didn't know and didn't want to know.  

This person would look into my eyes and tell me, with the most conviction I've seen from someone I've been in a relationship with; "I love you", "I'll never lie to you", "You are the only one I want to be with... forever".  The last statement I found particularly "high school-ish".  You see, he has a very juvenile view of what falling in love is.  In his eyes, what happens in the movies is what happens in reality.  

Unfortunately for me, I was being cheated on.  Whats worse, I was being cheated on for four months.  The bourrage of lies was simply overwhelming, in honesty I don't quite know how he differentiated them all and was able to keep his story straight.  He is a very talented liar without question.  In any event, he eventually broke up with me, via Facebook no less, because thats what adults do.  They cower in fear of what the other will say because they know the other person has an expansive vocabulary and would have definitely had 'the last word' after being abused for so long.  But alas, I just got the boot on Facebook. 

Don't worry though - no tears were shed, you see, I'd have had to been living under a rock to not know he was cheating.  When he started locking his phone with a passcode, I knew something was up, and it only took a few guesses to break the code.  (If there is one thing I am... it is tech savvy) 

So I wrote him off... hoping to never see or hear from him again because he proved me right.  It was my fault our relationship took the course it did because I did not do my due diligence and really get to know him before slapping that precocious label on "us". 

So now that you're caught up to round one... we start the next part... 

7 months later... 

I get an email from this person saying very little, just wanting to "check in on me" because apparently I needed checking up on.  I also knew that his relationship with the guy he cheated on me with was coming to an unfortunate and albeit predictable halt.   It was at this moment I had a very important decision to make... 

What do I do?

Respond?

or

Ignore him?

To ignore him wouldn't be the adult thing to do.  I've spent the last three years trying the best I can to be compassionate, forgiving, accepting and understanding.  I really try to do the "right" thing.   So with that said, I responded to him... 

We talked, and we talked... He apologized, I listened, he talked some more, I asked questions, he apologized again, I asked more questions, I told him how disappointed I was, he apologized...

Oprah says: "Forgiveness is giving up the hope that the past could be any different"

I forgave him...

In this moment I realized I was doing the right thing because I know most people would want to hold those ill feelings out of principle.  If there's anything I've realized since I've been sick, is life is too short to hold grudges, be angry, be mean... Its not worth it.  But with that forgiveness also came the understanding that I wouldn't be so quick to forget.  So you can imagine my surprise when he quickly, within a matter of just days, started insisting we be in a relationship again.  Insinuating that because he apologized and I forgave him, everything was okay between us.  This obviously was not the case.  I was not going to make the same mistake twice.  

So after some careful thought and consideration I told him that we could date and see what potentially happened.  He made claims that he'd changed so much that I figured this would give me an opportunity to acclimate myself with him again.  Then like I was experiencing deja vu all over again, the first few weeks were fine.  He was fun to be around, and I had a wonderful time.  But then it was the onslaught of "You don't give me enough attention" - "When will you be my boy friddle"  (because typing like you a 13 year old girl when you're a grown man is endearing?) - "I haven't seen you in xxx days" - "I haven't heard from you in xxx days" (we texted, his preferred method of communication daily i might add... for hours)... and my favorite "Thanks a lot Ryan, I see you were out with *insert male name here*.  I guess that means you're dating them now".  The accusatory tone he would take, and the accusations themselves, I truly believe he'd convinced himself of - but they were almost more of a ploy for him to gain reassurance that we were still an item.  This person is outrageously insecure, but on the flip side requires multiple reassurances a day that everything is fine. 

Should a relationship with him continue I knew there would be no chance for me to have any male friends. I knew my life would be put under a microscope and I knew that my illness would take a back seat to him (or so he thought).   So when another set of accusations came at me in the middle of the night about 2 weeks ago, I'd had enough.  i realized he'd not changed at all.  He was the same person he'd always been and with that I told him I was done.  I would be more than happy to be his friend and let him be an active participant in my life, but the chance for a relationship was gone.  He was not the person I would choose to spend my life with, not now, not ever.  

What bothered me the most was that after I told him about being friends, he proceeded to tell me he was never going to date anyone again, because I was the only one he loved and he was going to wait for me.   Now before I go on, remember, I told you a few paragraphs ago that he and I were dating and I was being accused of cheating when I wasn't. 

Imagine my surprise when I found out he'd been going on dates with other people behind my back (again - shocker i know)... He'd been asking his male friends about me.  He'd created a Grindr (dating app) profile to try to catch me hooking up with people.   It goes on and on... Then last night... he deleted me off Facebook again.  

I had to laugh...  heartily and as a response, I decided to text him and below is a transcription of the texts I sent him...

Did you seriously just delete me on Facebook.  I know you're awake and I'd like an answer.  I cannot tell you how outrageously disappointed I am. Thanks a lot, again.  i thought I was doing the right thing by forgiving you for the terrible and hurtful things you did to me.  I let you back into my life and for the first time since Ive been sick, I, who lives with no regrets (I live with purpose and i do the right thing) - Well, Im starting to think I regret that choice.  I should have a stress free life and for the most part I do.  Full of happiness and wonderful experiences surrounded by the people who love me.  But when I have to worry about angering you and worry if what Im doing is going to upset you - Thats unnecessary stress.  What I realize now is that you don't love me, because if you did you would want to be able to be a participant in my life.  Instead, when you couldn't get your way (aka me refusing to blindly jump into a relationship with you) you then have no purpose for me.  Petulance is unfortunate.  I truly believe people are inherently good by nature.  i believe people have to go out of their way to be mean.  I believe ugly hearts happen by choice. You have been mean to me, downright and despicably mean.  Purposefully mean.  And I don't even think you understand the magnitude of your actions most of the time.  And your heart... well, it's ugly at times.  Im sad that I went out on a limb to have you in my life again and you do this.  Its not as simple as deleting me off Facebook.  Its what the act represents.  You're done with me, shoving my kind gesture back in my face.  I didn't do anything wrong.  I still wish you the best and i have a sinking feeling you'll be able to move past me pretty quickly. In fact, I might go so far as to say you already have.  (In theory that is)

What he didn't like was that when we would get into discussions about what I wouldn't slap a label on it, I would mention "you cheated on me in the past - you hurt me' and he would be, quite literally, flabbergasted that I had the audacity to bring that up.  In his eyes, I had forgiven him and he was absolved of any wrong doing and I should just forget about it.  Obviously any rationale person would understand why I bring that issue up and the fact he doesn't understand just reaffirms his immaturity. 

Now he will advertise to some of his friends what an awful person I am and how here again, another boy has 'broken his heart'.   He won't have done anything wrong though... I was just arbitrarily cruel to him. 

So now he's moved on and Im happy because now, I can say without a shadow of a doubt that I did everything I could to give him the opportunity to partake in my life.  To let him share in experiences with me.  To take my journey with me and he has thrown it away.  I will not let my kindness be taken advantage of again... I will not make the same mistake twice.  This person is not an innocent victim, the truth is, he is the reason, the sole reason, he is where he is.  He weaves these intricate webs of lies and deceit, some things that don't even matter - like not having a car or a drivers license, and not just not now, not ever.  I have learned from my mistakes and I will not make the same mistake again.  

So a word to the wise... Always be yourself.  You are important, and you are perfect just the way you are.  Anyone who tries to tell you differently doesn't love you and accept you for who you are.  

... and if you should happen to come across an early twenties gay boy who is a constant victim, who has been used, abused, and screwed over by every single person he's ever dated without doing anything wrong... watch out my friend... watch out and as they say...

Fool me once shame on you, fool me twice shame on me.

... my feelings on the situation

In the previous blog entry I made mention of the discontinuation of my chemotherapy...  A lot of people have said "congratulations, what an early christmas gift that is!" or "aren't you excited?"  or "now you can get back to feeling normal".

The truth is, I'm not excited, I'm actually inundated with fear.  Im terrified.  I stay up at night wondering what is going on inside my body.  I find myself paying close attention to every inhale and every exhale.  Was there a difference between this series and the last?  Does my cough bring anything up?  Am I having trouble breathing?  It didn't take long the last time for my disease to catch up to me.  And, when it caught up - it caught up good.  You know, when I think back to the two major inpatient occurrences I had, the first for about 4 months, and the second for about 3 months, I often forget that even though the first time was more traumatic for my body, it was the second time that had the lasting damage, and effects long after I left the hospital.  I had my own oxygen machine for almost a year after I was discharged from The James the last time.  So am I excited?  my answer is - Im cautiously optimistic. 

When I think about being normal, I think it's funny because, this is my new normal.  I don't know what its like to not feel this way.  I don't know what its like to not have to rely on mass amounts of narcotics to get through the day and night.  I don't remember, because its been so long.   It'll be interesting to see how I feel in the next month...

My parents are both mixed I think...  My dad is happy for me, because he sees this as an opportunity for me to regain more control over my life, and he's just happy I won't have to go through as many procedures and needle sticks.  My mom... my mom is scared to death.  Scared because last time I went off chemo, this is what I remember...

waking up in my bed, sopping wet because I'd fallen asleep with a gatorade in my hand that spilled on me.  My mom standing over me, shaking me, but the room was sort of hazy.  She asked me could I sit up?  I could barely move because I could barely breathe.  I knew something was seriously wrong.  The next words out of her mouth were "Ray (my dad), call the squad, he's got to get to the hospital now".  I remember within 5 minutes the paramedics and police cars were in front of my house and the squad members were in my house with the gurney sitting outside my room.  They picked me up and set me down on it and strapped me in.  I remember as I was being taken out of my house, the last thing I saw was my mom and dad feverishly gathering their keys and my sister holding Bruno, his eyes transfixed on me as I lifted a few fingers to wave goodbye.  I thought that might be the last time I saw him, and I started to get tears in my eyes because I knew something was terribly wrong. 

I saw the sky as I exited my house, it was a beautiful fall day, with the bluest of skies.  I made a point of looking at my house, paying no attention to the traffic which had been stopped in one direction, until the doors of the ambulance slammed shut and we drove off, not knowing if it would be the last time I'd see my house.  

We pulled into Grandview, and I was greeted by a couple very familiar faces, including Debbie Ruef one of my mom's longtime coworkers and aunt to one of my best friends.  We've been great pals over the years and she's always been so kind to me, especially since I've been sick.  Debbie told me she was going to have to cut off my shirt, but not to worry because she'd buy me a new one.   They had trouble starting my line, but Debbie finally got it.  And when she did, with all the people and the commotion that was going on in the room the next thing happened and I can remember this like it happened but five minutes ago, and it haunts me to this very day:

She pulled the needle out of the catheter and disposed of it in the red sharps box and turned back to me.  When she turned i lifted my hand and grabbed her wrist and our eyes met, mine filled with tears, and I begged her "Don't let me die today. Please Deb, please save me"

She looked at me and put her hand on my face and said with a frog in her throat "i promise ...we're going to get you up out of here in no time so you can get back to making me laugh" and then she stepped out of my trauma room. 

I later found out the reason she stepped out was because she lost her composure and didn't want to cry in front of me, to keep me as calm as possible.   And in truth, she kept her promise to me.  She and the rest of the people involved in my care that day saved my life. 

I've often said I don't know what it feels like to save a life, but I do know how humbling it is to have yours saved. 

When I think about what happened when I went off chemotherapy the last time, I think of memories like the one I just shared, because very little good came out of me discontinuing it then.  Granted we learned a bit from our mistakes and Im in a different place health wise than I was then...

But still as scared as I am... I'm cautiously optimistic the future will bring good things to me, because to be pessimistic would be no better than throwing a pity party for myself and we all know thats not going to happen ;-)

More updates to follow!

To infinity... and beyond! - or just 2012

Its hard to think its already 2012!  So many great things to look forward to this year, including but not limited to the end of days in about 12 months from now.  Might I suggest everyone get out their lawn chairs for a front row seat for the rapture!

Im hopefully going to wrap up several topics into this one blog post, so here we go.

As a result of my illness,  I have been considered permanently and totally disabled as far as the IRS and SSI are concerned and as such I no longer work full time in an "office".  Not to say one day I won't, but for now - no work for me.  I assume it would come as no surprise to any of you that my days become, at times, monotonous and extremely boring.   Summer is different, but as anyone from Dayton can tell you, the winter months are just abysmal, with very little to do.  (I will say the above average temperatures have made my breathing a lot easier!)  With all that said, I finally decided, with the approval from my physicians and my parents, that I would go back to school.  Nothing particularly fancy, I don't think I should take a full load at first, I want to gradually get back into the swing of things.  Therefore I'm currently just taking one class.  I was lucky enough to also find it available Tuesday nights from 6:00 - 9:15, so I don't have to worry about getting up early which we all know I loathe, but more importantly, I won't have to adjust any of my medical appointments because of class and vice versa.   Im excited because this gives me the opportunity to regain a little of my life outside of my house, gives me a feeling of doing something that 'matters'.   I enjoy Wright State's campus, since all the buildings are connected with the tunnel network, and the buildings on campus are all extremely close together - it makes walking (which can sometimes, when its cold out, be an overwhelming task).   Just being able to get out of the house and do something that has purpose to it, is a great feeling.

Chemotherapy...


This is extremely late and I apologize for not explaining in detail what is happening like I said I would.  


On November 28th, Dr. Nanda and I had our usual "pre chemotherapy" appointment in which we were to go over the results of my staging scans.  Just so you understand, throughout a patients treatment plan different types of tests and images are taken along the way to guide the Oncologists in the appropriate direction for your treatment.  I get lots of blood work done all the time, and different breathing tests and cardio-pulmonary tests etc.  but the staging scans are the 'pictures' which show if, ultimately, the tumors are shrinking.

It should be said, since my diagnosis on 12/02/2008, never have I had a staging scan (which is given at 3-4 month intervals) that came back with a finding of "nodular consolidation" - or shrinking,  but I've also never had an increase of the tumors either, I've always had "findings are stable and similar, with little to no change from previous scan".  While I don't get amazing news that they are shrinking, I don't get bad news that its not responding.   Status quo for me!  If Im being honest, it used to bother me, to the point I would sometimes shed a few tears, but it was more because in my naivety, I thought it meant the chemotherapy wasn't working and in actuality the chemotherapy is keeping my tumors from grown larger.

So with that said, about 6 months ago Dr. Nanda wanted to try to increase the duration of time between my cycles to see if there was any change.   So we did, every cycle got a little longer, which was great for me especially over the summer!  She monitored me closely and this series of staging scans I was to have the results for on the 28th would be the tell tale factor, either my body would have succumbed to the tumors in some capacity, or they would have stayed the same and according the results of the staging scans, my results were no increase in nodular diffusion, similar findings to previous scan. 

This is good news!  So the long and the short of it - she told me she was comfortable DC (discontinuing) the chemotherapy to let my body rebound.  Im sure most of you know 3.5 years of non stop chemotherapy is not the typical scenario, its usually six cycles and you're done.  She explained to me she thought my body was strong enough now that I could (at least for the time being) keep the tumors from growing and as a result of not being on the chemo, the immune system that has been annihilated and subsequently suppressed since then, will have an opportunity to rebound and replace itself.

Im not going to lie - its scary.  I remember once upon a time a few years ago when a specialist at OSU: The James decided to DC my chemo and everything came rushing back and I ended up back in the hospital for three months.  But I realize my body is stronger now, and Im in a different place health wise now, and above all that, I trust Dr. Nanda.  I know, from the bottom of my heart, she would never jeopardize my life, or my wellbeing so Im comfortable.  Im scared, but comfortable.  So - here we are... The first week of January and no chemotherapy.  I get staging scans every 2 months now all year, assuming I stay off the chemo, so she can monitor my lungs very closely.  So Im hoping for the best!

Im going to break this update into a few pieces so - for right now...  this is the end of part 1, ill update part 2 shortly!

-Ryan