The other day it struck me that everything/one has to do with numbers. There are over 7 billion people in this world. I read a while back that the average human life expectancy is 78. 3-6 billion trees are cut down each year. The average person sleeps about 649,401 hours in their lifetime. The average number of puppies in a litter is 4-6. 1 in every 3 women (1 in every 2 men) will get Cancer in their lifetime.
Everything has a number. The other day I found out a number that I didn't know: the medicine that I found out was working has shown to be successful in only 10% of patients. Maybe this was told to me when I was in a xanax fog but I don't remember hearing that statistic. My mother stated that my oncologist clearly stated this fact not too long ago. A 90% failure rate is not exactly a number I want to hear.
Of course my mother, being the miracle believer she is, started raving how incredible it was for me to be one of those in the 10%. Yes, that's true...but I couldn't help but wonder how long I would remain in that small circle. I found myself questioning my numbers compared to everyone elses and honestly, it's both scary and comforting.
I know that in my life so far I am luckier then so many others and for that, I will always be thankful for the life I've been given. However, I still find myself wondering why some people will never be faced with certain challenges than others. Granted, every single person will battle their own trials and personal demons in their lifetime, don't get me wrong. I just find that in the short time I've had in this life I've seen some really good people go through way too much then they should have to.
Most recently I've watched some incredibly kind friends face some extreme challenges that unfortunately will not end with a desirable outcome. It just plain blows. When someone tells me I'm a strong person I automatically think of people like them and can't even imagine being as courageous. Although I cannot even begin to describe the affliction they will face, I can say that they've opened my eyes to the cold fact that anything can happen during your time on this earth. Some things will be amazing and some will be terrible. What I do know is that all of our numbers differ.
After coming to this realization I made an agreement with myself that from now on I would make decisions for me. I will stop doing what I think I should because that's what you're taught or told or made to believe is the right thing to do. I will start making decisions because it makes me happy. Whether or not everyone else agrees, doesn't matter anymore to me.
Now don't mistake this change of pace as being crazy or irrational. I mean simple decisions: buying those awesome shoes even though I should probably put it in my savings account. Calling out of work on a gorgeous day to take my dogs to the park. Slowing down. Living a more simple kind of life. Taking risks and not regretting or second guessing. Making mistakes. Going outside your comfort zone.
My next CT's are in 3 days. I will find out the results in 4. I'm obviously hoping for the best outcome - that the meds will still be working. After that I will have another 3 months until the next set of tests. Maybe I won't see the age of 78 or maybe I will. The point is, you just never know what life can throw at you. I'm starting to realize that perhaps we shouldn't waste it on things that don't make us happy. So what if you don't make the 1,000,000's you thought you would make. So what if you don't have the 24 room house you wanted to live in. Who cares if you only own 1 car every 15 years. Do what makes you happy and live each day for you.
Sunday, January 27, 2013
Saturday, November 17, 2012
FINALLY.
"Finally" was the first word out of my mouth when I received a phone call from my oncologist two hours after I got home from my most recent CT scans on October 24th. I didn't expect to hear my results until the following morning at my appointment with her. I was mentally prepared to wait the emotionally exhausting 24 hours to find out my fate but instead it came a lot quicker then I imagined.
My house phone rang, I heard my dad tell whoever was on the other end to hold on, I grabbed the phone and heard a familiar voice. My doctor said she wanted to call me so I didn't have to wait since she finally had the chance to give me some good feedback after months and months of nothing but defeating news. My CT scans were good. There was no change in the existing masses and no new ones had formed.
The meds were working.
Naturally, I started crying. I turned to my dad and told him everything was fine. Finally. I called my mom and was so happy to be able to tell her my scans were good for the first time in a long time. I really wasn't expecting them to be.
The following day I wasn't so bitter about waiting around almost two hours for my appointment that was running behind. For once, I didn't have to load myself up on my best friend Xanax. I was there to discuss my good news instead of being told the options planned out due to crappy news. It was a small victory - one that I was happy to accept. It also made it easier to head to the airport that night with a smile on my face to spend the next 13 days in Spain. I had decided the trip would either be a celebratory vacation or an escape from real life for a while. It felt good to know I could enjoy myself rather then worry about what would await me upon my arrival back to my normal life.
During my appointment with my oncologist, we obviously agreed to keep me on the combination of Lupron injections and daily Letrozole pills. We also discussed the option of RFA (Radio Frequency Ablation). A few months back I had an appointment to see if I was even a candidate for this type of procedure. Your tumors have to be within a certain size in order for it to be done - as of right now, mine are. RFA is basically a procedure that will burn my tumors (that's the type I would get, anyway). It's not a big surgery like I've been through in the past but it's also not some small, dinky form of treatment. I mean, holes are literally being burned into my lung. My lung could also collapse in the process which would mean another lovely chest tube (one of my biggest foes) and a possible hospital stay. Obviously, they can only do one lung at a time but they did say they would be able to do both tumors at the same time. The cool, hippy-ish doctor that spoke with us about RFA also stated that I would probably only have to wait about a month in between to do the other lung - which was a positive thing.
Needless to say, my mother was all about this procedure. Her theory consists of the idea that no Cancer in there is better then the Cancer being kept at bay. I sort of agree but I need a break. The last year and a half I've felt like a science project. All that comes to mind is the scene in Frankenstein when the electric machines go crazy and the monster suddenly starts to move..."It's alive!!"
The only difference is that I don't have the theatrical neck bolts to add to my list of freakish looking body defects. Perhaps I can request them the next time I go under the knife. At least I wouldn't need to worry about costume selections every Halloween.
My oncologist suggested we wait until my next set of scans at the end of January before we made any decisions on RFA. The problem with that type of procedure is that it doesn't cure you. It basically just zaps the existing masses but it doesn't mean they won't come back. I agreed that if in another three months I received favorable text results again, I would consider the option of RFA.
My next CT's are scheduled for January 30th, 2013. It would be really nice to start 2013 off with some positive news considering 2012 basically blew a big one. Unfortunately, the happiness of my recent results is starting to fade and the uncertainty of the next outcome is setting in.
Side note: I can report that as the days and weeks go by on these meds I have started to notice myself getting more emotional then usual. Today alone I cried twice! I was out to brunch with my dad at a local diner and I could feel the tears start welling up in my eyes. Why?! Was it because I was just so overwhelmed with the fact that it was taking abnormally long for my omelet to make it's way to my table? Then I made a run to Starbucks later in the day and while sitting in my car waiting for a light to change I just burst into tears. These were not tears of joy due to how delicious my chai latte tasted. These were some random tears from a weird combination of emotions. Out of nowhere. It's a little frustrating to not have a lot of control over my emotions but I'm trying to tell myself it's not me.
Everyone around me has been great with encouraging me to be positive; however, the truth of the matter is that anything can happen. The meds can stop working at any time. I've said in the past that I don't find myself to be a negative person, just a realist. I like to prepare for any situation. Don't get me wrong, I am SUPER happy that at least for now, I can breathe a little easier. It's just frustrating to live life in three month intervals. Hopefully I'll one day be able to move to six month intervals and then finally twelve month periods of relief. Until then, I'll take this battle victory in the war against my nemesis.
My house phone rang, I heard my dad tell whoever was on the other end to hold on, I grabbed the phone and heard a familiar voice. My doctor said she wanted to call me so I didn't have to wait since she finally had the chance to give me some good feedback after months and months of nothing but defeating news. My CT scans were good. There was no change in the existing masses and no new ones had formed.
The meds were working.
Naturally, I started crying. I turned to my dad and told him everything was fine. Finally. I called my mom and was so happy to be able to tell her my scans were good for the first time in a long time. I really wasn't expecting them to be.
The following day I wasn't so bitter about waiting around almost two hours for my appointment that was running behind. For once, I didn't have to load myself up on my best friend Xanax. I was there to discuss my good news instead of being told the options planned out due to crappy news. It was a small victory - one that I was happy to accept. It also made it easier to head to the airport that night with a smile on my face to spend the next 13 days in Spain. I had decided the trip would either be a celebratory vacation or an escape from real life for a while. It felt good to know I could enjoy myself rather then worry about what would await me upon my arrival back to my normal life.
During my appointment with my oncologist, we obviously agreed to keep me on the combination of Lupron injections and daily Letrozole pills. We also discussed the option of RFA (Radio Frequency Ablation). A few months back I had an appointment to see if I was even a candidate for this type of procedure. Your tumors have to be within a certain size in order for it to be done - as of right now, mine are. RFA is basically a procedure that will burn my tumors (that's the type I would get, anyway). It's not a big surgery like I've been through in the past but it's also not some small, dinky form of treatment. I mean, holes are literally being burned into my lung. My lung could also collapse in the process which would mean another lovely chest tube (one of my biggest foes) and a possible hospital stay. Obviously, they can only do one lung at a time but they did say they would be able to do both tumors at the same time. The cool, hippy-ish doctor that spoke with us about RFA also stated that I would probably only have to wait about a month in between to do the other lung - which was a positive thing.
Needless to say, my mother was all about this procedure. Her theory consists of the idea that no Cancer in there is better then the Cancer being kept at bay. I sort of agree but I need a break. The last year and a half I've felt like a science project. All that comes to mind is the scene in Frankenstein when the electric machines go crazy and the monster suddenly starts to move..."It's alive!!"
The only difference is that I don't have the theatrical neck bolts to add to my list of freakish looking body defects. Perhaps I can request them the next time I go under the knife. At least I wouldn't need to worry about costume selections every Halloween.
My oncologist suggested we wait until my next set of scans at the end of January before we made any decisions on RFA. The problem with that type of procedure is that it doesn't cure you. It basically just zaps the existing masses but it doesn't mean they won't come back. I agreed that if in another three months I received favorable text results again, I would consider the option of RFA.
My next CT's are scheduled for January 30th, 2013. It would be really nice to start 2013 off with some positive news considering 2012 basically blew a big one. Unfortunately, the happiness of my recent results is starting to fade and the uncertainty of the next outcome is setting in.
Side note: I can report that as the days and weeks go by on these meds I have started to notice myself getting more emotional then usual. Today alone I cried twice! I was out to brunch with my dad at a local diner and I could feel the tears start welling up in my eyes. Why?! Was it because I was just so overwhelmed with the fact that it was taking abnormally long for my omelet to make it's way to my table? Then I made a run to Starbucks later in the day and while sitting in my car waiting for a light to change I just burst into tears. These were not tears of joy due to how delicious my chai latte tasted. These were some random tears from a weird combination of emotions. Out of nowhere. It's a little frustrating to not have a lot of control over my emotions but I'm trying to tell myself it's not me.
Everyone around me has been great with encouraging me to be positive; however, the truth of the matter is that anything can happen. The meds can stop working at any time. I've said in the past that I don't find myself to be a negative person, just a realist. I like to prepare for any situation. Don't get me wrong, I am SUPER happy that at least for now, I can breathe a little easier. It's just frustrating to live life in three month intervals. Hopefully I'll one day be able to move to six month intervals and then finally twelve month periods of relief. Until then, I'll take this battle victory in the war against my nemesis.
Saturday, October 13, 2012
12 Days and Counting...
I feel like I took a bit of a hiatus from posting. I'm not sure why. Maybe it's because the last two months have been somewhat of a whirlwind in my personal life and I kind of forgot for a while that I'm still living in 3 month intervals. Well, the 3 months are almost up and my next appointment - which is perhaps my most important to date - is coming up in 12 days. It's scary.
On October 25th, 2012 I'll find out if the combination of both the Lupron and Letrozole are working...or not. If they are, it's 3 month intervals until they stop doing their job. If not, chemo...? I'm sure on the 24th when I'm laying on that slab of cold plastic with radiation being pumped through my body taking pictures of my insides, all I will be thinking about is how many hours, minutes, seconds it'll take to find out what they'll show. It's a horrible feeling. One that I'm sure too many people have felt many times.
My side effects have (thankfully) remained the same. It's hot flashes and mood swing central in Erin World. Could always be worse - I always try to remember that. I could look back at that list of nightmare-ish side effects and realize that practically all of them are worse then what I've had to deal with since I started on the Lupron. I am thankful for that, at least. I mean, I could've wound up with the fruity smelling breath for Pete's sake! Although, I've heard from a source that the scent of my breath isn't all that pleasant lately. I'm going to chalk this up to the meds and leave it at that.
One thing I've started trying to dive into is the wonderful world of Juicing. I like it! Clean up is a bitch (perhaps it's the Juicer I selected) but other then that and the fact that I have to take the garbage out daily because of the intense foul odor of the remains, I love it! I wouldn't exactly call myself a Juicing Extraodinaire just yet being that I don't really have any rhyme or reason to what I throw in there...but I do know that so far, I have not been turned off by the taste of any of my concoctions and the simple satisfaction it gives me that I'm loading my body up with natural vitamins makes the sting of my depleting bank account all the more worth while.
I had a bit of a running start that suddenly came to a jolting stop when I found out that kitchen appliances aren't very Erin-friendly. My first Juicer died on me from an unknown death (it was the second time I used it)...along with the garbage disposal who apparently choked on the remains of my pulp. Off to the store I went to try a cheaper (and easier to clean) Juicer, who decided to give up on life after the third veggie was thrown in. This wasn't a very good start to my new found love for juicing.
After a bunch of "Of COURSE this is happening to me!!!" tantrums, I returned back to the store and decided to give my first Juicer Model another shot. After having a brief peptalk with my new old Juicer, I was off and running once again. I'm hoping that now that we have an understanding, we can live in peace and juice forever. We shall see.
Aside from the juicing, I wanted and intended to try to go as Vegan as possible. However, those who know me know my main food enjoyments include seafood and cheese. I decided that a little Vegan was better then no Vegan so I will admit, I have been cheating...my affair with fish and seafood has continued. I AM trying to cut back whenever I can and substitute more veggies and fruit as much as possible. Every little bit can only help.
Along with the slight change of diet, I have started including exercise back into the mix. It's SO important and I have been neglecting it for too long. I remember when I was religiously at the gym at least 4 days a week. My body loved me for it and it's time to treat her the way she deserves once again. Plus it's a huge stress relief and Lord knows (lately especially) I have been teetering between the thin line of Sanity and Crazy Town.
When an important appointment is around the corner, the weeks and days leading up to it are always the worst emotionally for me. This time is no different. It doesn't help that for some reason I just have this bad feeling looming over me. Is it just my nerves or actual intuition? I'm obviously hoping for the nerves to win that battle. It's easy for everyone to tell you to stay positive when it's not them that's waiting to find out their fate. I always just smile and say, "I am".
These last few months since I started on the Letrozole have been both amazing and incredibly hard. I've been tested quite a few times emotionally and just when I thought I couldn't take anymore, I realized I could. It's incredible what you can conquer if you just keep pushing forward and believe in yourself. I'm trying to apply that logic to my health as best as I can. In the meantime, at least I know I can apply it to everything else in my life. Especially when you get a chance to witness some of the beauty this world has to offer. Yesterday I saw perhaps the most magnificent sky I've ever seen.
It makes you believe that Heaven must really exist. I was driving alone and couldn't help but pull over and just stare at it for a few minutes and smile. Moments like those are ones that I am finally beginning to appreciate more and more. Something so vast and impersonal suddenly feels like it was put there just for you. To have that feeling is great.
So - here I am. 12 days and counting until one of the most important days of my life, so far; to me, anyway. I have joked about D Day's in the past but this one - this Decision Day...Domination Day...anything but Defeat Day - is going to be one of the most emotional. I'm hanging onto the Hope that I always have. Hoping the nightmare might start coming to an end...or just Hoping I'll be able to handle it without the help of a Lobotomy.
I want to include something that was emailed to me a while back. I can say that I basically loathe "chain letter" emails but this one had a bit of a beautiful message. Till next time...
On October 25th, 2012 I'll find out if the combination of both the Lupron and Letrozole are working...or not. If they are, it's 3 month intervals until they stop doing their job. If not, chemo...? I'm sure on the 24th when I'm laying on that slab of cold plastic with radiation being pumped through my body taking pictures of my insides, all I will be thinking about is how many hours, minutes, seconds it'll take to find out what they'll show. It's a horrible feeling. One that I'm sure too many people have felt many times.
My side effects have (thankfully) remained the same. It's hot flashes and mood swing central in Erin World. Could always be worse - I always try to remember that. I could look back at that list of nightmare-ish side effects and realize that practically all of them are worse then what I've had to deal with since I started on the Lupron. I am thankful for that, at least. I mean, I could've wound up with the fruity smelling breath for Pete's sake! Although, I've heard from a source that the scent of my breath isn't all that pleasant lately. I'm going to chalk this up to the meds and leave it at that.
One thing I've started trying to dive into is the wonderful world of Juicing. I like it! Clean up is a bitch (perhaps it's the Juicer I selected) but other then that and the fact that I have to take the garbage out daily because of the intense foul odor of the remains, I love it! I wouldn't exactly call myself a Juicing Extraodinaire just yet being that I don't really have any rhyme or reason to what I throw in there...but I do know that so far, I have not been turned off by the taste of any of my concoctions and the simple satisfaction it gives me that I'm loading my body up with natural vitamins makes the sting of my depleting bank account all the more worth while.
After a bunch of "Of COURSE this is happening to me!!!" tantrums, I returned back to the store and decided to give my first Juicer Model another shot. After having a brief peptalk with my new old Juicer, I was off and running once again. I'm hoping that now that we have an understanding, we can live in peace and juice forever. We shall see.
Aside from the juicing, I wanted and intended to try to go as Vegan as possible. However, those who know me know my main food enjoyments include seafood and cheese. I decided that a little Vegan was better then no Vegan so I will admit, I have been cheating...my affair with fish and seafood has continued. I AM trying to cut back whenever I can and substitute more veggies and fruit as much as possible. Every little bit can only help.
Along with the slight change of diet, I have started including exercise back into the mix. It's SO important and I have been neglecting it for too long. I remember when I was religiously at the gym at least 4 days a week. My body loved me for it and it's time to treat her the way she deserves once again. Plus it's a huge stress relief and Lord knows (lately especially) I have been teetering between the thin line of Sanity and Crazy Town.
When an important appointment is around the corner, the weeks and days leading up to it are always the worst emotionally for me. This time is no different. It doesn't help that for some reason I just have this bad feeling looming over me. Is it just my nerves or actual intuition? I'm obviously hoping for the nerves to win that battle. It's easy for everyone to tell you to stay positive when it's not them that's waiting to find out their fate. I always just smile and say, "I am".
These last few months since I started on the Letrozole have been both amazing and incredibly hard. I've been tested quite a few times emotionally and just when I thought I couldn't take anymore, I realized I could. It's incredible what you can conquer if you just keep pushing forward and believe in yourself. I'm trying to apply that logic to my health as best as I can. In the meantime, at least I know I can apply it to everything else in my life. Especially when you get a chance to witness some of the beauty this world has to offer. Yesterday I saw perhaps the most magnificent sky I've ever seen.
So - here I am. 12 days and counting until one of the most important days of my life, so far; to me, anyway. I have joked about D Day's in the past but this one - this Decision Day...Domination Day...anything but Defeat Day - is going to be one of the most emotional. I'm hanging onto the Hope that I always have. Hoping the nightmare might start coming to an end...or just Hoping I'll be able to handle it without the help of a Lobotomy.
I want to include something that was emailed to me a while back. I can say that I basically loathe "chain letter" emails but this one had a bit of a beautiful message. Till next time...
A friend of mine
opened his wife's underwear drawer and picked up a silk paper- wrapped
package:
'This, - he said
- isn't any ordinary package.'
He unwrapped the
box and stared at both the silk paper and the
box.
'She got this
the first time we went to New
York
Well, I guess
this is it.
He got near the
bed and placed the giftbox next to the other clothing he was taking to the
funeral house, his wife had just died.
He turned to me
and said:
'Never save
something for a special occasion.
Every day in
your life is a special occasion'.
I still think
those words changed my life.
Now I read more
and clean less.
I sit on the
porch without worrying about anything.
I spend more
time with
my family, and
less at work.
I understood
that life should be a source of experience to be lived up to, not survived
through.
I no longer keep
anything.
I use crystal
glasses every day...
I'll wear new
clothes to go to the supermarket, if I feel like
it.
I don't save my
special
perfume for
special occasions, I use it whenever I want to.
The words
'Someday....' and ' One Day...' are fading away from my
dictionary.
If it's worth
seeing, listening or doing, I want to see, listen or do it
now....
I don't know
what my friend's wife would have done if she knew she wouldn't be there the next
morning, this nobody can tell.
I think she
might have called her relatives and closest
friends.
She might call
old friends to make peace over past quarrels.
I'd like to
think she would go out for Chinese, her favorite
food.
It's these small
things that I would regret not doing, if I knew my time had
come.
Each day, each
hour, each minute, is special.
Live for today,
for tomorrow is promised to no-one.
Sunday, August 12, 2012
Me vs. The Big C
Two Monday's ago, July 30th, 2012 I met with my Oncologist to discuss the results of my last CT Scans. Both tumors had grown, a new one had sprung up in my right lung and apparently a fourth mass in my left lung remained the same - although they will continue to watch it. I was obviously not thrilled with the growth of a new tumor and the other two getting larger, but was hopeful that due to the slow growth process, the Lupron injections were working to a certain extent. My Oncologist decided to add on an additional daily hormone blocker, Letrozole, to see if completely ridding my body of estrogen would stunt the growth of this evil parasite.
When questioned about chemo, she had a response I wasn't expecting. She basically said, for now, we should make me as comfortable as possible dealing with this disease instead of making me miserable with something as toxic as chemo...due to what was in store for my "future".
This meeting was different then any other meeting I had with her because of the lack of hope in her response to my results. The long and the short of what she said was that basically this disease was nasty and unpredictable and extremely serious...and that sooner or later (stressing the sooner), it would take over and it would win. So why torture me in the process...
Hearing that your life will most likely come to an end a hell of a lot sooner then you ever expected it to is not the most comforting thing that can run through your mind. To my own surprise, I found myself to be completely calm and somewhat sarcastic about this slight death sentence. I mean, how much have I already heard regarding this fucked up disease that has been inhabiting my body for the last (almost) four years? Sometimes I just feel jaded and kind of want to laugh at how much crap has been thrown my way. Just another crappy thing to add to the pile of bullshit thrown into the back of my mind.
Needless to say, the following day the news kind of sunk in and I had a slight breakdown. So basically, on top of never being able to have children, I should expect to die somewhat soon...? GREAT!
I won't lie. The last week or so has been a pretty emotional one. I'm up, down, up, down...crying, laughing, sad, happy, depressed, anxious, thankful, resentful...
Is it the hormones (or lack thereof)? Is it the fact that I'm going through menopause? Is it anxiety? Is it a combo of everything? Who the hell knows. I feel bad for those that are close to me because I feel like I can't control my moods super well anymore. Perhaps I'm slowly starting to slip into that crazed space in my head. I'm not quite sure.
What I DO know, however, is that I'm not a quitter. I never was. When I was backed into a corner, I usually fought my way out. I've never been one to have anyone tell me what I can or cannot do, so I'm not about to start now. You tell me The Big C is going to win? I don't think so, buddy!
Many things in life I find to be somewhat of a game...interviewing for a new job, bagging that guy you've had your eye on, stalking out an item of clothing you know will go on sale...it's all how you play your cards. I'd like to think that my odds when playing whatever game it is I'm playing at the moment, are usually pretty high. Call it confidence, call it cockiness, call it whatever the fuck you want. Usually, when I want something bad enough, I get it. I'm not about to change that now.
So clearly, it has now come down to Me vs. The Big C. Whose going to win? Sorry you piece of shit disease, it ain't gonna be you!
Up until last week I never really felt as though I was in a fight for my life but clearly the tables have turned and that is exactly what needs to happen. It's as if I knew I would need to strap on the gloves and give it a go with Cancer when I was first diagnosed. Good thing I already got the ink to prove it.
So now, my friends, comes the true test of who holds the power. My arch nemesis or me. Put your fists up, Cancer: let's go.
Monday, July 23, 2012
Current Thoughts...
(Written July 18th, 2012)
Obviously if it were up to me I would take the injections
over the alternative. It’s safe to say that really the only side effects (thus
far) have been hot flashes. Although it’s a little annoying to be sitting
somewhere completely fine and the next minute having to strip down to the bare
minimum whilst fanning yourself with the nearest makeshift item you can find
(and let me tell you, when it’s a few dollar bills, you don’t exactly get the
most accepting looks), I’ll take the weird body temperature changes instead of
some of the other daunting side effects menopause/Lupron brings on.
So now I guess you could say I’m a ticking time bomb of
sorts. I’ll be going about my business just fine and dandy and then WHAM! I
turn into Linda Blair from The Exorcist when her head is spinning around and
she’s spewing up green vile. It’s not a pretty sight and I feel bad for those
who have been in my path when that happens.
I should know by Tuesday or Wednesday of next week what life
will have in store for me and of course, I’m terrified. Not to mention for the
last two weeks my ribs on my left side under my boob feel as though I just
recently got surgery. What the fuck is that about? They’re killing me to the
point that I’ve once again declared The Bra my mortal enemy. They were hurting
at first but then went away a few days later. Then the pain returned and has
been with me since. It’s starting to make me nervous now. What the hell does
that mean? All that keeps running through my head is that there’s a giant tumor
pushing up against my ribs causing them to hurt.
From now until next week I’m sure I’ll be popping xanax like
jelly beans so be aware when you’re talking to me that if I have that blank,
glazed over stare, I’m most likely not hearing a damn word you’re saying.
I’m sure I’m not the only one that starts to be on edge a
few days, a week or even a few weeks before they find out some kind of life
changing news. Whether it be waiting for an Acceptance Letter to college,
finding out if you’re preg with a boy or girl, or awaiting some test results
that will affect the way you live from here on out, we always seem to feel that
twinge of uneasiness right before we hear the verdict. I’m not sure that I’ve
ever been more anxious or scared or nervous or manic then I’ve been the last
few days.
My CT’s are on Monday, July 23rd. Five days away.
Once I get the results I’ll find out if these injections have been working…or
if it was just another failed lab rat experiment. I’m actually scared about two
things: 1.) That this isn’t working and 2.) That it is. What’s the lesser of
two evils? If this isn’t working then it’s chemo for me…which we all know I’ve
been dreading since day 1. If it is working then it’s injections and side
effects and the fear of one day being riddled with the disease forever,
basically.
Number 2
(Written June 28th, 2012)
Almost four weeks ago on June 4th, 2012 I received my second Lupron injection. I was able to get this done at the Basking Ridge facility which made my anxiety a little less intense and my inconvenience a little more convenient. At least going there, I only need to travel an hour to get my 3 minute doctor visit and then travel the hour back home…as opposed to taking an hour and ½ train ride or car ride into the bustling and congested streets of NY and sitting around for three hours only to be seen for 1.5 minutes meanwhile having to listen to horror stories of dying Cancer patients overcrowding the waiting room.
Regardless, I then had a lovely lingering bruise that looked much like a spider bite (which I didn’t get when I was jabbed in the ass the last time). I’m not sure if I’m being overly paranoid, but lately I feel as though I’m bruising much easier then normal. I usually bruise fairly easy to begin with but I look like I was rough-housing sans padding with some football jocks.
Almost four weeks ago on June 4th, 2012 I received my second Lupron injection. I was able to get this done at the Basking Ridge facility which made my anxiety a little less intense and my inconvenience a little more convenient. At least going there, I only need to travel an hour to get my 3 minute doctor visit and then travel the hour back home…as opposed to taking an hour and ½ train ride or car ride into the bustling and congested streets of NY and sitting around for three hours only to be seen for 1.5 minutes meanwhile having to listen to horror stories of dying Cancer patients overcrowding the waiting room.
I was called in a few minutes after I arrived to receive my injection. I walked into the room, was told to put my hands on the counter as if I was getting strip searched and felt a sharp pinch…higher then where I thought I would feel it.
Maybe it’s just me, but I feel as though this woman stabbed me in my back…literally. I’m supposed to be receiving these injections in my ass. To me, this looks like my lower back, no? I know my ass is a little flat but I don’t think it’s as flat as my back so I’m quite sure someone – especially a nurse – could tell the difference.
Regardless, I then had a lovely lingering bruise that looked much like a spider bite (which I didn’t get when I was jabbed in the ass the last time). I’m not sure if I’m being overly paranoid, but lately I feel as though I’m bruising much easier then normal. I usually bruise fairly easy to begin with but I look like I was rough-housing sans padding with some football jocks.
Two days after this injection, I felt as though I was going through labor pains. As usual, I was sitting in my office desk chair while experiencing this charming side effect. Perhaps it’s life just letting me experience one of the not-so-pleasant things that comes along with child birth…allowing me to somewhat be “thankful” for not being able to bear children? Thanks, life…
On June 2nd I was asked to speak at my town’s Relay for Life’s Survivor Luncheon. I’ve been volunteering with The American Cancer Society since I was diagnosed but this past year, with everything going on, I felt as if I was surrounded by Cancer SO much that I just didn’t have it in me to volunteer like I was used to doing. So when a good friend and fellow Survivor asked me to speak, I was both honored and questionable. There have been previous years where I had been asked but I found myself thinking that my journey wasn’t as story worthy as many others who were fighting this battle. With everything I have experienced this past year, I decided that I wanted to do the speech this year.
Grabbing a glass of wine and my laptop, I penned a decent speech in just under two hours the Thursday before the event. I started out the intro by explaining my initial reaction upon being asked – which again, was that I didn’t feel like my story was as intense as other Survivors. I was then knocked back into reality by realizing that no matter how intense my Cancer ride through Hell was, every person fighting this disease has a story worthy of sharing. No matter how long or extreme or painful or difficult, we all experience the same fears and emotions that the next person does. No matter who you are, it’s never easy to hear that you have Cancer. Your mind automatically starts playing tricks on you and has you wondering when your time is going to come to an end. If it’s 10 days or 10 years since your diagnosis, you still hold your breath when your doctor informs you of your test results. You always have that looming anxiety that it will come back and what other torture devices you will have to endure.
It was an honor to be able to speak and try to convey a message of hope to my fellow Survivor’s. I only wish I was able to lift some spirits while I was up there but I know it’s hard to be positive when dealing with such a negative illness.
Unfortunately, you join a club that you never really wanted to sign up for once you get diagnosed. Of course, you can also look at it like you just gained some really close friends and you’ll meet some of the most incredibly courageous people you never imagined could exist. I know I did.
My next injection is scheduled for this coming Monday, July 2nd in NY because I’m also meeting with my Oncologist that day. I’m assuming I’ll be meeting with her to discuss my side effects. Although I know I’ve been complaining, I haven’t really experienced anything crazy yet…you know, other then feeling like I was getting stabbed in the uterus with a steak knife and having my body temperature fluctuate from cold to hot and hot to cold. I wouldn’t consider these hot flashes but rather just a change in my body temperature that I’m not used to getting.
I will say that I am waiting for more side effects to occur. Each day I expect to get them but I’m hoping they will never come. Who knows. It’s all a waiting game with this disease, is it not? I’ll leave you with my Survivor Speech:
My name is Erin Patrick and I’m a Survivor.
When I was asked to be the speaker for the Survivor Luncheon, I was hesitant to accept the offer. To me, I always felt that my journey through this Cancer battle wasn’t as intense or story worthy as other Survivor’s. I have yet to need chemo. I haven’t lost any body parts. I still physically feel healthy. Then I thought about it and realized that no matter how many surgeries or types of treatment or areas of the body affected, every single Survivor has a story worthy of sharing. We are all in a war for our lives. We all have the same fears and concerns. When we’re told, “You have Cancer,” we all share the same emotions. So here I am, to share my story with you today.
In 2008, at the age of 23, my boyfriend at the time informed me I felt swollen “down there”. I’m sure all the women can agree that if you’re swollen down there, you’re going to feel it. I told him he was nuts and went about my day. After work I decided to check myself and what I found left a huge lump in my throat. I found a hard mass, about the size of a golf ball, inside me. I immediately made an emergency trip to my OBGYN the following morning.
To my relief, he told me my Bartholin’s Gland was probably blocked, causing a cyst to form. This is a common occurrence for women. We decided to try some meds to bring down the swelling. If they didn’t work, I would have a small 15 minute procedure to have the cyst drained. Needless to say, after a few weeks on the meds, my “cyst” was growing larger and so I decided to have it drained. After waking up 2 hours after I had gone into surgery, I knew something was wrong – especially after my doctor held up his hands to show me how big my tumor was.
It took two weeks and two hospitals to finally diagnose me. On September 8th, 2008 I was diagnosed with Vaginal Leiomyosarcoma. LMS is rare in and of itself but to have it vaginally – especially at such a young age – was nearly unheard of. Finding out I had Cancer was earth shattering enough but to learn that it was “down there” wasn’t exactly comforting. I knew I would need to get over my phobia of needles and my body would never really be a private thing again.
Shortly after my surgery I started seeing specialists at Sloan-Kettering in NY. I was told that I was one of 20 something known cases worldwide with this type of Cancer in that area of the body. I had a second vaginal surgery to remove the margins around the area my tumor was present in October of 2008 and found out a few days later that my results were negative. I was Cancer free. It was one of the happiest days of my life. I wound up going every 3 months for CT’s, check up’s, blood work and endless probing and prodding for 2 and ½ years.
In June of last year, I received a call that I knew would change my life forever. My doctor called to follow up with the results of my routine CT scans. However, instead of hearing the usual, “they’re all clear!” response, he told me he was making an appointment for me with a lung doctor at the hospital. I already knew what this meant. I had Cancer again, and it was in my lung this time.
I’m going to digress a little and just state one thing about me. I sing. It is my passion in life. I’ve been doing it since I was a baby and I honestly can’t imagine my life without it. It’s who I am. It’s what I’m known for. So to hear that I had Cancer in my lung came along with a whole crapload of worries for me. Would I lose my lung? Would I be able to sing like I used to? Would I even be able to sing at all?
When I met with my lung doctor for the first time, he showed me where the tumor was in my lung. From the scans, it looked as though it was attached to an artery. He informed me that he wouldn’t know until I was under the knife if I was going to lose my lung (or at least a large portion of it) or if he would just be able to cut around the artery. He didn’t give me very good odds for the latter diagnosis. I was devastated.
On June 28th, 2011 I had major lung surgery on my left lung along with laparoscopic surgery on my pelvis due to a small nodule showing up there as well. The minute I woke up, the first thing I asked the nurse standing over my bed was if he took my entire lung. She smiled at me and said, “No. He only had to remove the tumor.” I couldn’t stop smiling and I made sure to tell everyone that walked by through my heavily medicated state that I still had my lung.
After 5 days in the hospital and nine weeks of Disability, I was finally able to strap a bra back on without feeling as though I was being stabbed in my back with a knife. Six months later, in December of last year, I was informed the Cancer was back yet again…in my right lung this time. I was wondering if I was ever going to catch a break. On January 3rd of this year, I woke up with good news, yet again. My doctor was able to do a more minor surgery and I still had my right lung. It was crazy for me because I was still recovering from my left lung surgery when I had the right one operated on. Even to this day I’m still numb at the incision spots and along my back and ribs.
In April I was told that I now have Cancer back in both lungs. This is my present day “situation”, for lack of a better term. I knew surgery was no longer an option and chemo isn’t proven to really work with my type of Cancer. My Oncologist informed me that the route she wanted to take was hormone therapy. Or rather, hormone blockage therapy. When my LMS returned to my lung the first time, my tumor was stained for estrogen levels. It showed that I had an unusually high amount of estrogen in the tumor so it was decided that if I was able to somehow get rid of the estrogen, it would, in turn, stop the Cancer from returning.
Last month I received my first injection of Lupron. This therapy will push me into early menopause and I was told that due to the evil relationship of estrogen and my Cancer, I would never be able to have children. At 27, hearing this kind of information isn’t the most settling news. I will be receiving my 2nd injection this Monday, followed by a final injection next month. At the end of July, I’ll have CT’s done and if the therapy is working, I’ll continue on it for as long as it works. If it isn’t working, it’ll be back to the drawing board.
I feel that although being told you have Cancer is one of the worst things you could possibly hear in your life, it also kind of forces you to bear a badge of courage. I never thought I could deal with everything I’ve gone through with such grace and strength. All of us are stronger then we could ever know. All of you are stronger and more incredible every day you fight this battle.
The message of Relay is Hope, and it’s one we all learn to appreciate upon hearing the words, “You have Cancer”. There are more incredible and courageous people I’ve met in this room that I could’ve ever imagined meeting in my whole life. When I was first diagnosed, I felt so alone. No one I knew had Cancer – especially no one my age. Then I found out about The American Cancer Society and I was instantly surrounded by amazing people, Surviving and fighting every day. I realized that a diagnosis is not a death sentence. It’s forced me to do things I wouldn’t normally do. I’ve taken more chances, I’ve opened my heart more to others, I’ve started to appreciate the beauty in things rather than dwelling on the not so attractive parts of life. I sing every chance I can get. I started a blog documenting my journey that Survivor’s from all over the world have connected with me through. It’s incredible how many kind words I’ve received and new friends I’ve made because of this. All of you are the reason I’ve been able to stay out of a strait jacket, locked away in a padded cell. You’ve shown me there is a reason to live and a reason to never give up. You’ve shown me there’s always Hope.
Monday, May 14, 2012
The Verdict.
So - to make a long story somewhat short, the verdict was that my only real choice at the moment is to do hormone therapy. I got my first Lupron shot (in the ass) on Monday after meeting with my oncologist and blowing through (no pun intended) about six boxes of crappy hospital tissues. Am I at all happy about this decision that I was practically forced to take (...being that there really are no other options for the time being...)? Not at all. But I guess this is just another fucking bump in the road that I'll have to get through.
While my oncologist was explaining the treatment, all that kept running through my mind was that my womanhood was basically being stolen from me...as foolish as that sounds. I was told that I would be pushed into menopause and would never be able to have children. Ever.
Being that my Cancer is shown to be estrogen based/fed/whatever you'd like to call it, I guess if I ever were to want to have a child it would be kind of like a death sentence for me. Then of course, the one thing she said that has stuck out in my mind more then anything else from Monday's meeting was that even if I had a child, the chances of me walking that kid down the aisle was slim. So basically, she shaved a whoooole lot of years off my life with that one statement. It's a little like getting your stomach punched extremely hard when hearing something like that. Like basically you're gasping for breath but you have none. It's a good thing I was about 6 xanax deep by then because if I was completely coherent I probably would've passed out.
After giving the go ahead to strip me of all things female, I collapsed on the floor of that stupid hospital bathroom and basically just kept telling myself that everything would be fine and I would get through this like I've gotten through everything else that has been thrown my way.
I find it extremely ironic and sickening that I can never have children and that my life might possibly end sooner then expected. Growing up, I ALWAYS said that I never wanted kids and I never wanted to be one of those suffering elderly people who are basically just surviving day by day instead of really living. Ha. Be careful what you wish for, eh? I'm obviously living proof that you might get what you want. And it might turn out to be exactly the opposite of what you need.
So now I'm plagued with the thought of never having a genetically matched mini me running around...and I'll tell you, the thought hurts. Who would've thought this anti-child woman would've ever had a change of heart? Not me! But in true Erin fashion, not being able to have something always made me want it that much more. Sick, I know.
After I popped another 3 xanax and exited Sloan with my face as puffy and red as an over-ripe tomato, I started the long ride home of torture just playing out all these horrible scenario's in my head of what was to come. As bottles of lube and ice packs and Viagra for women danced in my head, I finally drifted to sleep. It felt like the next two days were spent in that same self-medicated state where I was up and down all at the same time.
It is exactly one week since my first injection and I have a few things to say. First, the side effects have been minimal compared to the lovely LONG list I will share later on that I found on Lupron. The third day I was met with wanting to puke in my garbage can at work the entire day. I have never been so nauseous in my entire life. The following day my period showed up unannounced and unexpected. The fifth day was spent with my head between my legs because of the almost debilitating cramps that I was getting...all damn day. Basically, it was as if I was 14 again and I had to stay home from school because of how completely shitty I felt from being on the rag.
I can say that I was rather emotional upon learning that my period had come. It was almost as if I was waving from the deck of a departing ship and Aunt Flow was sending me off...wishing me well. I would never see her again. The bitch that I hated for so many years was finally leaving me alone and yet I wished she would stay with me for many, many more years to come. How fucked up is that!
The day after learning my fate and receiving my first injection, I met up with a very dear friend and fellow Survivor. She had actually been on Lupron in the past and told me that yes, the hot flashes and vaginal dryness sucked...but that it wasn't as bad as I would think it was going to be. This was somewhat reassuring but at the same time, all I kept thinking is knowing my luck, I would be the one to turn Bipolar, have my boobs shrink and never want to have sex again. I would be the 27 year old Shrew.
The day I returned to work, my mother decided to send me a link to glance over all the side effects that have been known to accompany Lupron use. The following are the ones listed (brace yourself):
Leuprolide injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
Moving along to the bottom list...difficult speech? Most times I already think I'm dyslexic with a speech impediment since I'm constantly stumbling over my own words. Decreased consciousness? Drooping eyelids?! Confusion?? It's a battle for me to remember where I am and what I'm doing on a regular basis let alone tack on some more of it. I mean...I don't even know how fruity breath can be added as a negative thing. I would actually prefer my breath to smell like a mango rather then the alternative. I'm going to say that this might actually be the one and only positive on this list of negatives.
Needless to say, I was not exactly thanking my mother for enlightening me with all these nightmare side effect possibilities. I guess the only thing I could do is wait to find out how this would affect me...and surprisingly (FINGERS CROSSED), so far so good. That's not to say I won't suddenly wake up not knowing where I am or how I gained 65lbs while I'm puking over the side of my bed in pain with a "general feeling of discomfort or uneasiness".
My next injection is scheduled for June 4th and the following one in July, followed by CT's to see how (or if) this treatment is working. If it is, I will continue this treatment indefinitely until it stops working. If it's not working, I will most likely start chemo. My oncologist did make it a point to say we would find the right one that wouldn't cause my hair to fall out. At least she remembered that my vanity is still coming into play here.
So, as usual, now I get to play the waiting game to see if this whole hormone therapy bullshit will actually work. I was considering making a small shrine to my birth control that I will no longer need (we've been having an affair for around 8 years) but decided to spare you the photo montage and just say that the amount of support I've received over the last week has been incredibly heartwarming. It makes moving onwards and upwards a little easier...even if I seem like an emotional wreck most of the time. I'm hoping I can just go on living...happily. Time will tell.
In the meantime, if you see me wandering the streets aimlessly and don't know who I am or what I'm saying, do not fret. It's just the hormones.
While my oncologist was explaining the treatment, all that kept running through my mind was that my womanhood was basically being stolen from me...as foolish as that sounds. I was told that I would be pushed into menopause and would never be able to have children. Ever.
Being that my Cancer is shown to be estrogen based/fed/whatever you'd like to call it, I guess if I ever were to want to have a child it would be kind of like a death sentence for me. Then of course, the one thing she said that has stuck out in my mind more then anything else from Monday's meeting was that even if I had a child, the chances of me walking that kid down the aisle was slim. So basically, she shaved a whoooole lot of years off my life with that one statement. It's a little like getting your stomach punched extremely hard when hearing something like that. Like basically you're gasping for breath but you have none. It's a good thing I was about 6 xanax deep by then because if I was completely coherent I probably would've passed out.
After giving the go ahead to strip me of all things female, I collapsed on the floor of that stupid hospital bathroom and basically just kept telling myself that everything would be fine and I would get through this like I've gotten through everything else that has been thrown my way.
I find it extremely ironic and sickening that I can never have children and that my life might possibly end sooner then expected. Growing up, I ALWAYS said that I never wanted kids and I never wanted to be one of those suffering elderly people who are basically just surviving day by day instead of really living. Ha. Be careful what you wish for, eh? I'm obviously living proof that you might get what you want. And it might turn out to be exactly the opposite of what you need.
So now I'm plagued with the thought of never having a genetically matched mini me running around...and I'll tell you, the thought hurts. Who would've thought this anti-child woman would've ever had a change of heart? Not me! But in true Erin fashion, not being able to have something always made me want it that much more. Sick, I know.
After I popped another 3 xanax and exited Sloan with my face as puffy and red as an over-ripe tomato, I started the long ride home of torture just playing out all these horrible scenario's in my head of what was to come. As bottles of lube and ice packs and Viagra for women danced in my head, I finally drifted to sleep. It felt like the next two days were spent in that same self-medicated state where I was up and down all at the same time.
It is exactly one week since my first injection and I have a few things to say. First, the side effects have been minimal compared to the lovely LONG list I will share later on that I found on Lupron. The third day I was met with wanting to puke in my garbage can at work the entire day. I have never been so nauseous in my entire life. The following day my period showed up unannounced and unexpected. The fifth day was spent with my head between my legs because of the almost debilitating cramps that I was getting...all damn day. Basically, it was as if I was 14 again and I had to stay home from school because of how completely shitty I felt from being on the rag.
I can say that I was rather emotional upon learning that my period had come. It was almost as if I was waving from the deck of a departing ship and Aunt Flow was sending me off...wishing me well. I would never see her again. The bitch that I hated for so many years was finally leaving me alone and yet I wished she would stay with me for many, many more years to come. How fucked up is that!
The day after learning my fate and receiving my first injection, I met up with a very dear friend and fellow Survivor. She had actually been on Lupron in the past and told me that yes, the hot flashes and vaginal dryness sucked...but that it wasn't as bad as I would think it was going to be. This was somewhat reassuring but at the same time, all I kept thinking is knowing my luck, I would be the one to turn Bipolar, have my boobs shrink and never want to have sex again. I would be the 27 year old Shrew.
The day I returned to work, my mother decided to send me a link to glance over all the side effects that have been known to accompany Lupron use. The following are the ones listed (brace yourself):
Leuprolide injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
-
tiredness
-
hot flashes (a sudden wave of mild or intense body heat), sweating, or
clamminess
-
breast tenderness, pain, or change in breast size in both men and women
-
vaginal discharge, dryness, or itching in women
-
spotting (light vaginal bleeding) or menstruation (periods)
-
decrease in size of testicles
-
decrease in sexual ability or desire
-
swelling of the hands, feet, ankles, or lower legs
-
pain, burning, or tingling in the hands or feet
-
pain, burning, bruising, or hardening at place where injection was given
-
change in weight
-
muscle or joint pain
-
flu-like symptoms
-
acne
-
depression
-
unable to control emotions and frequent mood changes
-
nervousness
-
general feeling of discomfort or uneasiness
- difficulty with memory
-
redness or swelling at place where injection was given
-
itching, rash, or hives
-
difficulty breathing or swallowing
-
pain in the arms, back, chest, neck, or jaw
-
slow or difficult speech
-
dizziness or fainting
-
weakness, numbness, or inability to move an arm or leg
-
bone pain
-
painful, frequent, or difficult urination
-
blood in urine
-
extreme thirst
-
weakness
-
dry mouth
-
nausea
-
vomiting
-
breath that smells fruity
-
decreased consciousness
-
sudden headache
-
blurred vision
-
vision changes
-
difficulty moving eyes
-
drooping eyelids
- confusion
Moving along to the bottom list...difficult speech? Most times I already think I'm dyslexic with a speech impediment since I'm constantly stumbling over my own words. Decreased consciousness? Drooping eyelids?! Confusion?? It's a battle for me to remember where I am and what I'm doing on a regular basis let alone tack on some more of it. I mean...I don't even know how fruity breath can be added as a negative thing. I would actually prefer my breath to smell like a mango rather then the alternative. I'm going to say that this might actually be the one and only positive on this list of negatives.
Needless to say, I was not exactly thanking my mother for enlightening me with all these nightmare side effect possibilities. I guess the only thing I could do is wait to find out how this would affect me...and surprisingly (FINGERS CROSSED), so far so good. That's not to say I won't suddenly wake up not knowing where I am or how I gained 65lbs while I'm puking over the side of my bed in pain with a "general feeling of discomfort or uneasiness".
My next injection is scheduled for June 4th and the following one in July, followed by CT's to see how (or if) this treatment is working. If it is, I will continue this treatment indefinitely until it stops working. If it's not working, I will most likely start chemo. My oncologist did make it a point to say we would find the right one that wouldn't cause my hair to fall out. At least she remembered that my vanity is still coming into play here.
So, as usual, now I get to play the waiting game to see if this whole hormone therapy bullshit will actually work. I was considering making a small shrine to my birth control that I will no longer need (we've been having an affair for around 8 years) but decided to spare you the photo montage and just say that the amount of support I've received over the last week has been incredibly heartwarming. It makes moving onwards and upwards a little easier...even if I seem like an emotional wreck most of the time. I'm hoping I can just go on living...happily. Time will tell.
In the meantime, if you see me wandering the streets aimlessly and don't know who I am or what I'm saying, do not fret. It's just the hormones.
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