As the end of 2011 draws near, I can't help but think to myself, GOOD RIDDANCE. Each year comes with it's up and downs but for me, I feel as though 2011 was one big slippery, slimy, unsatisfactory ride down. I'm hoping that the start of a new year will bring the start of some good/positive things.
On that note, I'd like to reflect on the good that is in my life. This year has brought along some positive things as well as the not-so-great. New friends, the rekindling of old ones, family, a deeper respect for those that help to make the world a better place and I guess a deeper respect for myself.
This year above all, I've come to learn that when faced with traumatic issues, there are always people - whether you know them or not - willing to lend a supportive hand. It's crazy. The amount of kind gestures and words of encouragement that surrounded me this year is something I will never forget. It always surprises me when people take the time to express their emotions for someone they barely know.
We watch the news, look out our windows, at work, at school, in the home...their are negative things happening around the world at all times. Sometimes you get so caught up in the bad that you forget there is still good out there. This year has shown me there are many kind souls still left in the world and that maybe we should stop focusing so much on all the bad.
Bad things are going to happen constantly throughout life - but hey, that's life, no? If everything was great all the time we would never be able to realize that maybe we should be thankful for what we do have - instead of what we don't.
Don't get me wrong - I'd still like to live in a bigger house, make a more comfortable salary, not have to worry if Cancer's ugliness will be staring me down once again...but maybe I shouldn't worry so much about the little things. About the person driving 20 miles under the speed limit in front of me. About the line at the store that wraps around the building. About that friend of a friend of a friend whose 47 minute story could've been told in a matter of 2.8 minutes.
Maybe we should look at the "bad" little things that annoy us every day as a way of whatever force is out there, telling us to slow down and just realize that this is your life. You've only got one of it. Why not try to enjoy it and make the most of it?
I could've done without most of the events that took place in 2011 but I could only hope that 2012 has some better things in store. And if not...if this year will be a repeat of last year, then at least I know I can handle it. I've faced many of life's emotional let-downs this year and had no problem telling them to fuck off. I guess I could have the same mentality this year...
To all my friends, family, readers...have a Safe, Healthy, Happy New Year and I look forward to sharing more of life's experiences - both good and bad - with all of you in 2012.
Saturday, December 31, 2011
Saturday, December 24, 2011
Merry Christmas To All.
As I sit here on Christmas Eve writing out my Christmas cards, I can't help but reflect on a few things. Unfortunately, this year's holiday season isn't too joyous. Aside from receiving the news that I have Cancer again and need surgery again, my Grandma passed away yesterday morning. It was so unexpected too...which I guess is the saddest part.
I will say that although it's so heart wrenching that she's gone, in a way I'm thankful. She broke her hip years ago and became bed-ridden after that, causing her to be in that bed for 6 years already. That's no way to live. However, she was well taken care of and seemed to be somewhat content...although her mind has been going lately. I think it was actually partly because of her that she started believing she just took a walk on the beach or cooked dinner for everyone. She went to a happy and pleasant place in her mind and went there quite often. However, most of the time she knew who we were and had conversations with us about our lives.
One time a year or so ago she asked if I was engaged yet (ha). When I told her that no, I wasn't and that I was still single, she went on to tell me about the kind of man I should wait for. She insisted that I only choose a truly "good" man - someone genuine of heart. It was a lovely conversation and one I will never forget.
Throughout my Grandma's life, I've always known her to be religious. She attended church every Sunday, helped with the church bingo, donated quite a lot of her time and money over the years, and always kept (and prayed it every day) a Rosary on her. If anyone was to go to Heaven, it would be her. The last 6 years she's been confined to her bed the bulk of her time was spent praying. It's incredible to see someone so devoted to their religious beliefs. My mother believes that my small "miracles" of sorts (how I found the Cancer initially, getting it removed when I was told I didn't have to, having it stay away for almost 3 years, only having the tumor removed in my left lung instead of losing the whole thing, etc.) are in part due to her praying for me so much. Although my mother never told her outright that I had Cancer, she informed her that I was ill and needed surgery when it came down to the times I was diagnosed and for her to pray for me. I already know my Grandma didn't need to be told to pray for me because I know she always did - but maybe she prayed a little extra during those times.
The night of the 22nd my mother and aunt received a call that my Grandma was breathing weird and was vomiting. They stayed all night but she seemed to be doing better in the morning - talking, holding down food, etc. All of a sudden her breathing got heavy and weird again and within a matter of a half hour or less, she was gone. I'm glad it was quick and hopefully as painless as possible. It was just super unexpected. She was fine up until two nights ago. I guess it was just her time.
The whole thing just reminds me that life is a fragile thing and it's up to you to choose how you want to live it. Because she was so extremely kind and giving, she devoted her time to praying for the well being of others. How selfless.
I know she is definitely up in whatever Heaven there is, seated extremely close to God or whatever Higher Power we have up there. I know she is still praying for me and I feel comfort in knowing I have someone like her on my side.
Merry Christmas to all. Hopefully I will be able to move past the negative things surrounding my holiday season and be thankful for my life and the good that is in it.
I will say that although it's so heart wrenching that she's gone, in a way I'm thankful. She broke her hip years ago and became bed-ridden after that, causing her to be in that bed for 6 years already. That's no way to live. However, she was well taken care of and seemed to be somewhat content...although her mind has been going lately. I think it was actually partly because of her that she started believing she just took a walk on the beach or cooked dinner for everyone. She went to a happy and pleasant place in her mind and went there quite often. However, most of the time she knew who we were and had conversations with us about our lives.
One time a year or so ago she asked if I was engaged yet (ha). When I told her that no, I wasn't and that I was still single, she went on to tell me about the kind of man I should wait for. She insisted that I only choose a truly "good" man - someone genuine of heart. It was a lovely conversation and one I will never forget.
Throughout my Grandma's life, I've always known her to be religious. She attended church every Sunday, helped with the church bingo, donated quite a lot of her time and money over the years, and always kept (and prayed it every day) a Rosary on her. If anyone was to go to Heaven, it would be her. The last 6 years she's been confined to her bed the bulk of her time was spent praying. It's incredible to see someone so devoted to their religious beliefs. My mother believes that my small "miracles" of sorts (how I found the Cancer initially, getting it removed when I was told I didn't have to, having it stay away for almost 3 years, only having the tumor removed in my left lung instead of losing the whole thing, etc.) are in part due to her praying for me so much. Although my mother never told her outright that I had Cancer, she informed her that I was ill and needed surgery when it came down to the times I was diagnosed and for her to pray for me. I already know my Grandma didn't need to be told to pray for me because I know she always did - but maybe she prayed a little extra during those times.
The night of the 22nd my mother and aunt received a call that my Grandma was breathing weird and was vomiting. They stayed all night but she seemed to be doing better in the morning - talking, holding down food, etc. All of a sudden her breathing got heavy and weird again and within a matter of a half hour or less, she was gone. I'm glad it was quick and hopefully as painless as possible. It was just super unexpected. She was fine up until two nights ago. I guess it was just her time.
The whole thing just reminds me that life is a fragile thing and it's up to you to choose how you want to live it. Because she was so extremely kind and giving, she devoted her time to praying for the well being of others. How selfless.
I know she is definitely up in whatever Heaven there is, seated extremely close to God or whatever Higher Power we have up there. I know she is still praying for me and I feel comfort in knowing I have someone like her on my side.
Merry Christmas to all. Hopefully I will be able to move past the negative things surrounding my holiday season and be thankful for my life and the good that is in it.
Wednesday, December 21, 2011
A Little Story of Faith.
As I celebrated my 27th birthday on Saturday, 12/17, I couldn't help but feel a sense of Faith because of something that recently happened to me. On my way home from work on Friday, 12/16, my good friend asked me to stop by her work because she had something she's been meaning to give to me. When I arrived she pulled out a small bag with a small pendant in it. She told me a mutual friend of ours gave it to her to give to me. As she explained what it was and what it meant, I couldn't believe what I was hearing.
For those who know me well, you know I'm not a very religious person. I do believe there is a God - a Higher Power. I pray. I believe He watches over us and I pray for my loved ones and myself. But I would consider myself more spiritual then religious. I don't attend church, I don't read the Bible, I don't believe that if you commit a small sin that you sit in Purgatory for however long it takes to get up to Heaven. I feel that if you are really a good person, God will know. However, I couldn't help but be in slight awe of what I was holding in my hand.
The pendant in my palm was passed along to me by someone who has been through quite enough trials and tribulations that it's hard to believe he wouldn't want to keep it for himself. This pendant was blessed by Mother Teresa herself - and so was he.
How incredible is that? The woman was Canonized as a SAINT for crying out loud. The very meaning of the canonization of a saint is that the Pope, the Supreme authority in the Catholic Church, declares that a person practiced heroic virtue and lived in fidelity to God's grace, is with God in Heaven and is to be venerated throughout the whole Church. It's crazy when you think about it.
Just the idea that someone who really doesn't need to think nor care about anyone's problems but his own - to give up something so meaningful and just Awesome. How selfless for someone to give it to someone else because they feel that person needs it more then them. It's just amazing and I was completely honored to receive it.
It's really comforting to know that good people who put others before themselves still exist in the world. I know most people wouldn't want to give something that was blessed by a Saint to someone else to keep...especially when they could use the blessing for themselves. It's that kind of spirit that really makes you think about the true meaning of this time of the year.
Happy Holiday's, everyone.
For those who know me well, you know I'm not a very religious person. I do believe there is a God - a Higher Power. I pray. I believe He watches over us and I pray for my loved ones and myself. But I would consider myself more spiritual then religious. I don't attend church, I don't read the Bible, I don't believe that if you commit a small sin that you sit in Purgatory for however long it takes to get up to Heaven. I feel that if you are really a good person, God will know. However, I couldn't help but be in slight awe of what I was holding in my hand.
The pendant in my palm was passed along to me by someone who has been through quite enough trials and tribulations that it's hard to believe he wouldn't want to keep it for himself. This pendant was blessed by Mother Teresa herself - and so was he.
How incredible is that? The woman was Canonized as a SAINT for crying out loud. The very meaning of the canonization of a saint is that the Pope, the Supreme authority in the Catholic Church, declares that a person practiced heroic virtue and lived in fidelity to God's grace, is with God in Heaven and is to be venerated throughout the whole Church. It's crazy when you think about it.
Just the idea that someone who really doesn't need to think nor care about anyone's problems but his own - to give up something so meaningful and just Awesome. How selfless for someone to give it to someone else because they feel that person needs it more then them. It's just amazing and I was completely honored to receive it.
It's really comforting to know that good people who put others before themselves still exist in the world. I know most people wouldn't want to give something that was blessed by a Saint to someone else to keep...especially when they could use the blessing for themselves. It's that kind of spirit that really makes you think about the true meaning of this time of the year.
Happy Holiday's, everyone.
Thursday, December 15, 2011
"Happy" Birthday to Me.
I received a call on Monday stating that my lung doctor wanted to see me to discuss surgery options and that he could "squeeze" me in on Wednesday at 10:45am. If I decided on surgery, I would not need to meet with my Oncologist but if I decided against it, I would then meet with her to go over whatever other options I had. Because I already knew those other "options" were to either A.) do nothing or B.) get hormonal treatment, I figured my only real option was surgery.
I was finally seen around 12:30pm. My life now seems to revolve around the amount of time I waste waiting for appointments.
When my lung doctor walked in I (jokingly) told him that I never wanted to see him again...especially not this soon after my surgery. He smiled and began to go over what was happening. What I like about him is that he shows me my scans so I can see what he's actually talking about.
He showed me my most recent scans of my right lung, along with the scans of my left lung when they found the tumor the last time. It's without question that the one in my left lung was legit like 90% larger then the ones in my right lung. And actually, there's only one real tumor right now - the second one is questionable. From looking at the scans I could see how the real one grew and how the other one was still a bit hazy and unclear. He said that when I was in surgery he would remove the second one if he felt that it needed to be removed.
There are a few good things and a few bad things. The first good piece of news is that I apparently always had these small masses - so they are not new metastises. That is actually great, not good, news. Because I already had them, it means that new Cancer has not appeared. The bad news is the location of the first tumor. It is located right near a vein and will be difficult to remove. Of course! Because not only do I have to live with Cancer...but I have to live with difficult Cancer. It's always in spots that are not desirable.
He said that the surgery could go one of two ways:
1.) He will first attempt to go in laparoscopically with a camera and remove the masses. This is obviously the more desirable type of surgery. The recovery time would probably only be a few weeks, I would have a CRAZY significant amount LESS scaring on my body and would most likely only be in the hospital for one night. Not to mention that my ribs would never be touched causing basically no pain for months and months afterwards - like I still have from my surgery in June.
2.) He won't be able to cut out the tumor around the vein and will need to perform the same surgery as last time - only with a slightly smaller incision.
Obviously I will be totally devastated if it's the latter. I know I'm strong and can handle quite a bit but I really don't know if I could go through that torture AGAIN. It'll be basically 6 months to the day (give or take a few days) since they operated on my left lung and now I'll have to go through the same fucking bullshit but on my right side?! I'll never be able to wear a bra again!
I'm already in pain every day (granted it's tolerable but it's still extremely uncomfortable) on my left side. I couldn't even imagine having BOTH sides of my body totally sore, numb, uncomfortable, etc. Just the thought of it makes me so angry. I can't believe this is happening again.
Naturally I told him that if he really wanted to give me a good birthday present, he would do everything in his power to remove this shit laparoscopically...and save my tattoo as much as he could. That's right. He will have to go in right where my tattoo is on my right side. Great. I'm glad I suffered through a huge rib piece for hours only to have it mutilated by unwanted surgery. Note where the arrow is:
Yeah. Not a happy lady over here.
After I signed all the consent forms, cried, gave my doctor one last pleading effort to do everything he could to make me not have to go through what I went through the last time...I was on my way out of the office and onto do all the pre-surgery crap. Again.
The last time I had to do the Pulmonary testing the idiot girl who was doing it was legit poking around trying to find my artery for 5 minutes before I cursed her out and told her if she stabbed me one more time I was going to flip out on her. Lucky for me, this time I had someone who knew what they were doing. And she was quick to inform me that the girl who did it the last time was no longer employed at Sloan. Great! Glad I could be the pin cushion.
Since I've been basically getting exposure treatment while being in the Trial with all the needles I had to endure, I'm much more confident that I won't pass out with blood work. This was totally different. Because they have to extract blood from the artery and not the vein, they need to go in super deep. Ew. I'm about to puke while typing this. All I'm going to say is that I almost passed out. The blood drained from my face and things were getting foggy. Two cups of orange juice and 10 minutes of rest and I was ok to blow into the lung machine thing. My mom said she was watching the screen as I did my tests and my lungs were so strong the cursor practically shot off the screen. Ha. All I can say is that my wrist hurts today and it looks like I got bit by a spider.
After the Pulmonary Tests I waited again until they took me to do all the pre-surgery vitals and EKG and whatnot. More blood work was involved but I was fine. The only thing that kept running through my mind was that I could not believe I was going through this again...such a short time after my last surgery. It just really fucking sucks.
My surgery is scheduled for January 3rd, 2012. I guess I wanted to be able to semi enjoy my birthday, Christmas and New Years without being in pain. The shitty thing is that I really can't enjoy my New Years as much as I'd like to since I can't drink or even take freakin' vitamins a week before my surgery. I guess I'll be ringing in the New Year sober...not like that's a major issue. But being around drunk people when you're not drunk isn't exactly the most fun you'll ever have. Oh well.
The only other thing that really blows is the fact that I'll be 27 in two days and it's like I'm not even excited for it. The only thing I keep thinking about is the impending doom I'm going to have to face in a few weeks. Not to mention the fact that once again I won't know what's happening until I wake up from surgery. I won't know if I'll be shacked up in my house for a few weeks or a few months. I won't know if I'll be in crazy pain with tubes coming out every which way and in the hospital for 5 days. I won't know if I'll be facing a miserable healing process or if it'll be a piece of cake. It sucks - not to know. That, I think, is the worst part.
I was finally seen around 12:30pm. My life now seems to revolve around the amount of time I waste waiting for appointments.
When my lung doctor walked in I (jokingly) told him that I never wanted to see him again...especially not this soon after my surgery. He smiled and began to go over what was happening. What I like about him is that he shows me my scans so I can see what he's actually talking about.
He showed me my most recent scans of my right lung, along with the scans of my left lung when they found the tumor the last time. It's without question that the one in my left lung was legit like 90% larger then the ones in my right lung. And actually, there's only one real tumor right now - the second one is questionable. From looking at the scans I could see how the real one grew and how the other one was still a bit hazy and unclear. He said that when I was in surgery he would remove the second one if he felt that it needed to be removed.
There are a few good things and a few bad things. The first good piece of news is that I apparently always had these small masses - so they are not new metastises. That is actually great, not good, news. Because I already had them, it means that new Cancer has not appeared. The bad news is the location of the first tumor. It is located right near a vein and will be difficult to remove. Of course! Because not only do I have to live with Cancer...but I have to live with difficult Cancer. It's always in spots that are not desirable.
He said that the surgery could go one of two ways:
1.) He will first attempt to go in laparoscopically with a camera and remove the masses. This is obviously the more desirable type of surgery. The recovery time would probably only be a few weeks, I would have a CRAZY significant amount LESS scaring on my body and would most likely only be in the hospital for one night. Not to mention that my ribs would never be touched causing basically no pain for months and months afterwards - like I still have from my surgery in June.
2.) He won't be able to cut out the tumor around the vein and will need to perform the same surgery as last time - only with a slightly smaller incision.
Obviously I will be totally devastated if it's the latter. I know I'm strong and can handle quite a bit but I really don't know if I could go through that torture AGAIN. It'll be basically 6 months to the day (give or take a few days) since they operated on my left lung and now I'll have to go through the same fucking bullshit but on my right side?! I'll never be able to wear a bra again!
I'm already in pain every day (granted it's tolerable but it's still extremely uncomfortable) on my left side. I couldn't even imagine having BOTH sides of my body totally sore, numb, uncomfortable, etc. Just the thought of it makes me so angry. I can't believe this is happening again.
Naturally I told him that if he really wanted to give me a good birthday present, he would do everything in his power to remove this shit laparoscopically...and save my tattoo as much as he could. That's right. He will have to go in right where my tattoo is on my right side. Great. I'm glad I suffered through a huge rib piece for hours only to have it mutilated by unwanted surgery. Note where the arrow is:
Yeah. Not a happy lady over here.
After I signed all the consent forms, cried, gave my doctor one last pleading effort to do everything he could to make me not have to go through what I went through the last time...I was on my way out of the office and onto do all the pre-surgery crap. Again.
The last time I had to do the Pulmonary testing the idiot girl who was doing it was legit poking around trying to find my artery for 5 minutes before I cursed her out and told her if she stabbed me one more time I was going to flip out on her. Lucky for me, this time I had someone who knew what they were doing. And she was quick to inform me that the girl who did it the last time was no longer employed at Sloan. Great! Glad I could be the pin cushion.
Since I've been basically getting exposure treatment while being in the Trial with all the needles I had to endure, I'm much more confident that I won't pass out with blood work. This was totally different. Because they have to extract blood from the artery and not the vein, they need to go in super deep. Ew. I'm about to puke while typing this. All I'm going to say is that I almost passed out. The blood drained from my face and things were getting foggy. Two cups of orange juice and 10 minutes of rest and I was ok to blow into the lung machine thing. My mom said she was watching the screen as I did my tests and my lungs were so strong the cursor practically shot off the screen. Ha. All I can say is that my wrist hurts today and it looks like I got bit by a spider.
After the Pulmonary Tests I waited again until they took me to do all the pre-surgery vitals and EKG and whatnot. More blood work was involved but I was fine. The only thing that kept running through my mind was that I could not believe I was going through this again...such a short time after my last surgery. It just really fucking sucks.
My surgery is scheduled for January 3rd, 2012. I guess I wanted to be able to semi enjoy my birthday, Christmas and New Years without being in pain. The shitty thing is that I really can't enjoy my New Years as much as I'd like to since I can't drink or even take freakin' vitamins a week before my surgery. I guess I'll be ringing in the New Year sober...not like that's a major issue. But being around drunk people when you're not drunk isn't exactly the most fun you'll ever have. Oh well.
The only other thing that really blows is the fact that I'll be 27 in two days and it's like I'm not even excited for it. The only thing I keep thinking about is the impending doom I'm going to have to face in a few weeks. Not to mention the fact that once again I won't know what's happening until I wake up from surgery. I won't know if I'll be shacked up in my house for a few weeks or a few months. I won't know if I'll be in crazy pain with tubes coming out every which way and in the hospital for 5 days. I won't know if I'll be facing a miserable healing process or if it'll be a piece of cake. It sucks - not to know. That, I think, is the worst part.
Wednesday, December 7, 2011
Life as I know it.
I decided to take the day off today to lounge around my house with my dogs and watch movies on the couch. Sometimes you just need a breather, you know? I was woken up this morning by a phone call from my doctor's office - scheduling me for an appointment on the 15th. I was kind of pissed that I wouldn't be able to find out what the hell is going on until then so I called my mom to do the dirty work and find out what was actually happening from my doctor.
Side note: My 27th birthday is on the 17th. Happy birthday to me!
My mom called me back a little while later with a bunch of news. I guess you could say it's both good and not so good. I'll start with the good.
First of all, there are three nodules but the third one is actually in my left lung - which apparently was already there before my surgery. This one actually shrunk in size so they don't think it's anything to worry about and do not believe it's cancerous. Which is great! The second piece of news is that she doesn't want to explore chemo at this time...again. Which, of course, I'm thrilled with. The third piece of (semi) good news is that the new tumors in my right lung are so small that there are a few different options I can choose from. Which leads into the not so great news.
The first choice I have is to not do anything and watch to see if they grow during the next 3 months until my next CT's. Apparently quite a few people choose this choice! I mean, to each his own but seriously - I don't want this shit in my body. Get it the fuck out. So that is not even a possibility in my mind. My second option is to get this type of hormonal therapy which would include pills and/or injections. This would throw me into early menopause. GREAT!! My mom didn't discuss this with my doctor but my only concern with that (other then the loads of unwanted side effects) would be if I ever decided I wanted to have kids - would I be able to? I don't know if I want that hanging over my head. And Lord knows I was never a kid person but I still want to know I have the option. The third choice is this less invasive type of surgery where they actually go in and burn the tumors.
She said that she didn't think my lung doctor would want to operate only because I legit JUST had surgery. My mom asked if she could speak with my lung doctor to see what his thoughts on all this would be so that on the 15th we would have all possible options to explore.
The last piece of information I should add is that my doctor said that in the scheme of everything, these tumors are extremely small. The one that has been there for a year or so was a .7 and the new one from my scans in August was a .4. They both grew to a .9. Obviously, it's not a good thing. But, they are still very small. This is the only saving grace I'm holding onto. At least it's not like over the last few months they grew into this giant mass that was taking over my lung. It's still fucking scary and I'm still super upset. But at least I know I have a few options to look into.
Decisions, decisions...
Side note: My 27th birthday is on the 17th. Happy birthday to me!
My mom called me back a little while later with a bunch of news. I guess you could say it's both good and not so good. I'll start with the good.
First of all, there are three nodules but the third one is actually in my left lung - which apparently was already there before my surgery. This one actually shrunk in size so they don't think it's anything to worry about and do not believe it's cancerous. Which is great! The second piece of news is that she doesn't want to explore chemo at this time...again. Which, of course, I'm thrilled with. The third piece of (semi) good news is that the new tumors in my right lung are so small that there are a few different options I can choose from. Which leads into the not so great news.
The first choice I have is to not do anything and watch to see if they grow during the next 3 months until my next CT's. Apparently quite a few people choose this choice! I mean, to each his own but seriously - I don't want this shit in my body. Get it the fuck out. So that is not even a possibility in my mind. My second option is to get this type of hormonal therapy which would include pills and/or injections. This would throw me into early menopause. GREAT!! My mom didn't discuss this with my doctor but my only concern with that (other then the loads of unwanted side effects) would be if I ever decided I wanted to have kids - would I be able to? I don't know if I want that hanging over my head. And Lord knows I was never a kid person but I still want to know I have the option. The third choice is this less invasive type of surgery where they actually go in and burn the tumors.
She said that she didn't think my lung doctor would want to operate only because I legit JUST had surgery. My mom asked if she could speak with my lung doctor to see what his thoughts on all this would be so that on the 15th we would have all possible options to explore.
The last piece of information I should add is that my doctor said that in the scheme of everything, these tumors are extremely small. The one that has been there for a year or so was a .7 and the new one from my scans in August was a .4. They both grew to a .9. Obviously, it's not a good thing. But, they are still very small. This is the only saving grace I'm holding onto. At least it's not like over the last few months they grew into this giant mass that was taking over my lung. It's still fucking scary and I'm still super upset. But at least I know I have a few options to look into.
Decisions, decisions...
Tuesday, December 6, 2011
It's back...Again.
Welp - today didn't go as I'd hoped/prayed. To be honest I don't even have the strength to discuss the hours of waiting around for my three appointments (as I am currently sedated on more then a few xanax...). But what I will say is that I got the third worst news of my life delivered by the nasty bitch doctor. The two nodules that were already in my right lung grew and now there's a third. Given my track record it's Cancer. Again. In my right lung this time.
I am so fucking upset.
Not only am I, of course, upset that it's back...but I'm upset that I fucking did this Trial and basically tortured myself for months only to now be removed from it because the Cancer is back. Gotta love it.
At first I was really mad because I just couldn't help but feel like I did all this bullshit for nothing but I mean, I guess it meant something. The whole thing just really fucking sucks. Like, hardcore. And the worst part is that I - AS USUAL - have to wait around to find out what's going to happen. Since my regular doctor wasn't there today to deliver the news, now I have to wait for her to call me to either schedule an appointment to discuss my options or tell me over the phone. I'm guessing she'll want me to come in like they always do.
The nasty doctor mentioned having the nodules biopsied, getting chemo or more surgery. The one slightly good piece of information is that the nodules aren't exactly super big so I'm praying by some grace of whatever God is out there that they'll be able to just remove them by some small type of surgery rather then the pure fucking HELL I had to endure the last time.
I am devastated. But I'm also starting to wonder what the bigger picture for me is. Will this ever end? Will I be doomed to constantly be wondering when, not if, it will come back? It's just another major stress I have to worry about.
Any positive thoughts, prayers, good vibes, whatever that can be sent my way, I'd sure appreciate it.
I just can't but help but feel...defeated. It's just like, how much is life going to load on me? I wish it would just give me some sort of break already. Again, I've never asked why this happened to me...why I had to be the one...but I just wish I could see what was going to happen with my future. Will I forever be dealing with this? How many scars am I going to wind up with? Not that I even give a shit about a few physical scars - I'm talking about the emotional ones. It's just the process of going through surgery or treatment or probing or prodding or healing. It all just fucking sucks. I was soo hoping that this Trial would possibly lead to something good. It's a smack in the face that it didn't.
Back to the drawing board.
I am so fucking upset.
Not only am I, of course, upset that it's back...but I'm upset that I fucking did this Trial and basically tortured myself for months only to now be removed from it because the Cancer is back. Gotta love it.
At first I was really mad because I just couldn't help but feel like I did all this bullshit for nothing but I mean, I guess it meant something. The whole thing just really fucking sucks. Like, hardcore. And the worst part is that I - AS USUAL - have to wait around to find out what's going to happen. Since my regular doctor wasn't there today to deliver the news, now I have to wait for her to call me to either schedule an appointment to discuss my options or tell me over the phone. I'm guessing she'll want me to come in like they always do.
The nasty doctor mentioned having the nodules biopsied, getting chemo or more surgery. The one slightly good piece of information is that the nodules aren't exactly super big so I'm praying by some grace of whatever God is out there that they'll be able to just remove them by some small type of surgery rather then the pure fucking HELL I had to endure the last time.
I am devastated. But I'm also starting to wonder what the bigger picture for me is. Will this ever end? Will I be doomed to constantly be wondering when, not if, it will come back? It's just another major stress I have to worry about.
Any positive thoughts, prayers, good vibes, whatever that can be sent my way, I'd sure appreciate it.
I just can't but help but feel...defeated. It's just like, how much is life going to load on me? I wish it would just give me some sort of break already. Again, I've never asked why this happened to me...why I had to be the one...but I just wish I could see what was going to happen with my future. Will I forever be dealing with this? How many scars am I going to wind up with? Not that I even give a shit about a few physical scars - I'm talking about the emotional ones. It's just the process of going through surgery or treatment or probing or prodding or healing. It all just fucking sucks. I was soo hoping that this Trial would possibly lead to something good. It's a smack in the face that it didn't.
Back to the drawing board.
Monday, December 5, 2011
Fuck you, Cancer.
So - tomorrow I have my first CT's since I started the Trial. I can't believe it was 6 months ago already. Six months down, one year to go...of needles and tests and blood work and doctor visits, anyway. I'm both a little nervous and excited for these CT's. God willing they will be fine and I'll be able to start counting the days/months/years of being Cancer free again. It would be really great if this series of vaccinations actually meant I wouldn't have to worry about something showing up ever again.
My day of fun starts tomorrow at 8am. My CT's are scheduled for 9am which means I have to be there an hour early to drink the gallon of grossness they make you consume before your scans. After my CT's are done, my next appointment isn't until 2pm! Which means I'll be walking aimlessly around NY for approximately four hours until my blood work. After that, I'm scheduled to meet with a doctor. Guess which one? That nasty BITCH I said I never wanted to be scheduled with again!
Because I had to call Sloan back four times to get all my appointments scheduled on the same day rather then multiple days, she was the only available doctor on the day they were able to schedule everything on. I'm pissed. At least this time I really don't have any questions to ask. I'm legit not even going to smile at her. Just check my heartbeat for 18 seconds like you did the last time and get out, assbag.
After my (it's sure to be...) lovely appointment with her, I'll have to wait another hour and 1/2 to two hours to get my vaccination...the fourth appointment of the day. Again, this is because apparently on the days I see a doctor they can't start thawing the vaccination until the doctor sees me and calls it in. It's so fucking stupid but what am I going to do? So this basically means I'll be aimlessly walking for yet another two hours of my life on the streets of NY until they call me to tell me I can come get jabbed with the second needle of the day. Joy.
I'm assuming I won't get home until around 7-8pm tomorrow and we're leaving at like, 6:15am. Although it's better to get everything done in the same day, they space it out way too much. I really don't get how they don't look at a schedule like that and just ponder to themselves, hmm...if I were her I sure as hell wouldn't want to spend 10 hours of my day in and out of doctor appointments.
Maybe I'm the crazy one.
On a more positive note, I added some new ink to my body. I thought about it for a while and decided that although these last 3+ years have had their ups and downs, ultimately the tribulations I've endured have just made me stronger. It was as if this was a test of my strength and capacity as a person. I always knew I was capable of handling shitty situations but I really never knew I could withstand so much until I was able to pull through without completely falling apart.
For those dealing with an illness, loss, some test of character...keep holding on. If you give up you'll never know incredibly brave you really are. When things seem like they can't get any lower, they might. Life has a nasty sense of humor but the way I see it you have two choices: fight or give up. If everything in this world was easy we would never know that we could survive the worst of times and come out stronger then ever.
So to that, I say Fuck You, Cancer.
September 8th, 2008 and June 8th, 2011 have made me what I am today: Stronger.
My day of fun starts tomorrow at 8am. My CT's are scheduled for 9am which means I have to be there an hour early to drink the gallon of grossness they make you consume before your scans. After my CT's are done, my next appointment isn't until 2pm! Which means I'll be walking aimlessly around NY for approximately four hours until my blood work. After that, I'm scheduled to meet with a doctor. Guess which one? That nasty BITCH I said I never wanted to be scheduled with again!
Because I had to call Sloan back four times to get all my appointments scheduled on the same day rather then multiple days, she was the only available doctor on the day they were able to schedule everything on. I'm pissed. At least this time I really don't have any questions to ask. I'm legit not even going to smile at her. Just check my heartbeat for 18 seconds like you did the last time and get out, assbag.
After my (it's sure to be...) lovely appointment with her, I'll have to wait another hour and 1/2 to two hours to get my vaccination...the fourth appointment of the day. Again, this is because apparently on the days I see a doctor they can't start thawing the vaccination until the doctor sees me and calls it in. It's so fucking stupid but what am I going to do? So this basically means I'll be aimlessly walking for yet another two hours of my life on the streets of NY until they call me to tell me I can come get jabbed with the second needle of the day. Joy.
I'm assuming I won't get home until around 7-8pm tomorrow and we're leaving at like, 6:15am. Although it's better to get everything done in the same day, they space it out way too much. I really don't get how they don't look at a schedule like that and just ponder to themselves, hmm...if I were her I sure as hell wouldn't want to spend 10 hours of my day in and out of doctor appointments.
Maybe I'm the crazy one.
On a more positive note, I added some new ink to my body. I thought about it for a while and decided that although these last 3+ years have had their ups and downs, ultimately the tribulations I've endured have just made me stronger. It was as if this was a test of my strength and capacity as a person. I always knew I was capable of handling shitty situations but I really never knew I could withstand so much until I was able to pull through without completely falling apart.
For those dealing with an illness, loss, some test of character...keep holding on. If you give up you'll never know incredibly brave you really are. When things seem like they can't get any lower, they might. Life has a nasty sense of humor but the way I see it you have two choices: fight or give up. If everything in this world was easy we would never know that we could survive the worst of times and come out stronger then ever.
So to that, I say Fuck You, Cancer.
September 8th, 2008 and June 8th, 2011 have made me what I am today: Stronger.
Monday, October 17, 2011
The Good, The Bad and The Stupid.
It is 9:26pm on a Monday night as I begin to write this. I just got home from a full day at work which lead into my blood work appointment this evening in NY. There are a few points I'd like to touch upon tonight. First - it's always a reassuring feeling when you have more common sense then the people you are dealing with who are scheduling your appointments.
I have been scheduled for my blood work appointment tonight (at 6:45pm) for at least a month. Nothing has changed with this. This afternoon around 3:40pm I received a call from a 212 area code. I've come to learn that whenever a number with this area code shows up - it's always Sloan. Here I'm thinking they've rescheduled my three December appointments (12/5, 12/7 AND 12/12...even people without jobs would never make that trek into the city three separate times in one week) into something slightly more feasible...and logical. This is what I hear on the other end of the phone: "Hi...are you almost here? Or are you on your way?" Um, I'm sitting in my desk chair at work...?
Apparently, since I clearly have psychic abilities that everyone knows about, I was just supposed to know that they scheduled me to meet with my Oncologist (that's right - the same one I met with 7 days ago...) to "re-consent" to my Trial at 3:15pm today. Riiiight. The girl on the other end of the phone - who I always enjoy when I see her - had no idea that I had no idea about my 3:15pm appointment and asked me if the lab was even open at 6:45pm. Ha. She said she would call me right back once she found out what the heck was going on.
An hour later I called my doctor's office to find out what was happening since I was scheduled to leave for the train 25 minutes later to go to my actual appointment. My doctor wound up getting on the phone to say she had no idea what was happening and that long story short, they changed some of the blood work from week 17 to this week, so I had to sign off on it again. Which is fine - just let me know what the hell is going on! She stated she would sign her portion of the paperwork and leave it for me to sign once I got to my blood work appointment later that night.
Off I go to my appointment. My mother and I arrive a few minutes early to which the nurse looks at me like I have 17 heads and tells me the Trial nurse left because they said I cancelled my appointment for that night.
I wish I had a personal photographer (for many reasons) to catch the array of faces I must make during my visits to Sloan. Needless to say, multiple phone calls were made to I'm sure many people who were on their way home from work. My paperwork that was supposed to be signed and waiting for me was nowhere to be found. The nurse on duty (who is always very nice whenever I see her) had no idea how much blood to draw. Finally, my Oncologist called back stating that since my paperwork had somehow gone missing from the time it was sent down the two floors from her office to the lab, I would only be able to get my blood work done that was originally supposed to be drawn. Fine. At this point I just wanted something to be done so I would know I didn't waste my time/money rushing into the city.
For the second time in a week, my blood was drawn without me going into a full-fledged panic attack. I think I was even calmer seeing that only 3 vials were being taken. After the nurse was done and I was guzzling orange juice, she stated that since we didn't have the signed consent, the other 10 VIALS that were supposed to be drawn tonight couldn't be.
Excuse me? An additional 10 VIALS? That would make 13 in total tonight should they have actually had my paperwork. Are they trying to bleed me dry?! No sooner did she say that, that I started to feel the blood drain from my face and my anxiety start to kick in. I talked myself down from an attack, reassuring myself that at least I wouldn't need to go through that tonight. But would this mean I'd have to come back since not everything was done? I'm nervous not only because I'm not looking forward to another appointment - but also because what if this screws up my Trial somehow? I didn't go through all the crap I've already gone through and pumped with some unknown substance into my body for it to just suddenly mean nothing. I guess I'm going to have to call my doctor later this week to find out for sure.
As I was walking out with my mother I made a comment that I would have to include tonight's events in my next blog. She shot back that maybe I should write about Sloan in a positive way rather then a negative one. I don't agree with her that I've been portraying Sloan in a negative light. I just want to be clear - that hospital has done miracles with me and I will forever be grateful for the amazing doctor's I've come in contact with there. I'm alive and well today because of them. However, when I started writing this blog I made it a point to commit to documenting everything along this journey - both good and bad. This is life and shitty things happen all the time. People fuck up. Mistakes happen. I just wish they wouldn't happen so often in my world but hey - what can ya do!
At least the softball size welt that I usually get from my vaccination didn't seem as bad this time around. I didn't really have a lot of pain and you can see that the spot isn't as large. Perhaps there is a "sweet spot" on my arm that when injected into that specific area, my reaction isn't as severe.
To close out my thoughts for tonight, I'd just like to take a moment to talk to all the "social" smokers out there. I can proudly say that I have no regrets in my life. I did everything I did because at the time I did it, I thought it was the "right" thing to do and I trust myself and know that I've learned from many, many mistakes I've made along the way. One of the things I would do differently if I could do it over would be to never have been a "social" smoker in my earlier years.
I was never a smoker. However, when I would drink if someone was holding a cigarette I would take a few drags. Why? Why did I ever do this? Honestly - what is the point? What did it get me? I haven't touched a cigarette in about 6 years...this isn't because of Cancer. This is because I realized how incredibly fucking dumb it was. It didn't do anything for me but give me a headache and a sore throat. I was scared it was going to fuck up my voice. Ha.
I've had way too many heated discussions with friends and loved ones regarding the dangers of only being a "social" smoker. The sad fact of the matter is, no one understands unless they actually have to go through something themselves. I haven't touched a cigarette in years - yet I wound up with Cancer in my lung. It's so unfair...yet I wouldn't wish this fucking disease on my worst enemy. However, I do wish I could make people understand that every time you inhale all those poisons/chemicals, you're that much closer to having your worst nightmares come true.
This isn't a joke. It's a cold and extremely lonely place when you're the one the doctor is showing the scans of a malignant tumor to. When you're the one questioning how much longer you're expected to live. When you're the one sitting in the waiting room of a hospital, watching dying people sitting across from you...and to your left...and to your right...all hanging onto the hope that they might get a few more years, or months...or days.
It's especially lonely when you watch people you care so much about voluntarily stick that cigarette in their mouth after they were hysterically crying about how broken they were knowing you have Cancer again only a few months ago. I honestly wish I was without a fucking care in the world and could have the option to light up whenever I felt like it. Why not? People do it all the time. But at what cost? I guess they never really think there is a cost until something horrible happens to them. Clearly it's not enough when something horrible happens to someone they love and apparently care so much about.
There are many things in this life that I have questioned and will continue to question. That will forever remain one of them. How someone could be so close to another that they go to every doctor's appointment. Sit through every anxiety attack. Watch every tear fall from that other person's eyes. See all the pain and torment that other person has as they battle a life-threatening disease that they got stuck with for no apparent and good reason...yet they voluntarily put themselves at risk for the same disaster to happen to them. I don't understand. It doesn't make any sense. It makes me so extremely angry - and it always will. I'm the one that wound up with this, yet I'm the one that always tried to keep it away.
Think before you act, people. Is it really worth it in the end?
And as for the 10 additional vials of blood...all I have to say to you is...
I have been scheduled for my blood work appointment tonight (at 6:45pm) for at least a month. Nothing has changed with this. This afternoon around 3:40pm I received a call from a 212 area code. I've come to learn that whenever a number with this area code shows up - it's always Sloan. Here I'm thinking they've rescheduled my three December appointments (12/5, 12/7 AND 12/12...even people without jobs would never make that trek into the city three separate times in one week) into something slightly more feasible...and logical. This is what I hear on the other end of the phone: "Hi...are you almost here? Or are you on your way?" Um, I'm sitting in my desk chair at work...?
Apparently, since I clearly have psychic abilities that everyone knows about, I was just supposed to know that they scheduled me to meet with my Oncologist (that's right - the same one I met with 7 days ago...) to "re-consent" to my Trial at 3:15pm today. Riiiight. The girl on the other end of the phone - who I always enjoy when I see her - had no idea that I had no idea about my 3:15pm appointment and asked me if the lab was even open at 6:45pm. Ha. She said she would call me right back once she found out what the heck was going on.
An hour later I called my doctor's office to find out what was happening since I was scheduled to leave for the train 25 minutes later to go to my actual appointment. My doctor wound up getting on the phone to say she had no idea what was happening and that long story short, they changed some of the blood work from week 17 to this week, so I had to sign off on it again. Which is fine - just let me know what the hell is going on! She stated she would sign her portion of the paperwork and leave it for me to sign once I got to my blood work appointment later that night.
Off I go to my appointment. My mother and I arrive a few minutes early to which the nurse looks at me like I have 17 heads and tells me the Trial nurse left because they said I cancelled my appointment for that night.
I wish I had a personal photographer (for many reasons) to catch the array of faces I must make during my visits to Sloan. Needless to say, multiple phone calls were made to I'm sure many people who were on their way home from work. My paperwork that was supposed to be signed and waiting for me was nowhere to be found. The nurse on duty (who is always very nice whenever I see her) had no idea how much blood to draw. Finally, my Oncologist called back stating that since my paperwork had somehow gone missing from the time it was sent down the two floors from her office to the lab, I would only be able to get my blood work done that was originally supposed to be drawn. Fine. At this point I just wanted something to be done so I would know I didn't waste my time/money rushing into the city.
For the second time in a week, my blood was drawn without me going into a full-fledged panic attack. I think I was even calmer seeing that only 3 vials were being taken. After the nurse was done and I was guzzling orange juice, she stated that since we didn't have the signed consent, the other 10 VIALS that were supposed to be drawn tonight couldn't be.
Excuse me? An additional 10 VIALS? That would make 13 in total tonight should they have actually had my paperwork. Are they trying to bleed me dry?! No sooner did she say that, that I started to feel the blood drain from my face and my anxiety start to kick in. I talked myself down from an attack, reassuring myself that at least I wouldn't need to go through that tonight. But would this mean I'd have to come back since not everything was done? I'm nervous not only because I'm not looking forward to another appointment - but also because what if this screws up my Trial somehow? I didn't go through all the crap I've already gone through and pumped with some unknown substance into my body for it to just suddenly mean nothing. I guess I'm going to have to call my doctor later this week to find out for sure.
As I was walking out with my mother I made a comment that I would have to include tonight's events in my next blog. She shot back that maybe I should write about Sloan in a positive way rather then a negative one. I don't agree with her that I've been portraying Sloan in a negative light. I just want to be clear - that hospital has done miracles with me and I will forever be grateful for the amazing doctor's I've come in contact with there. I'm alive and well today because of them. However, when I started writing this blog I made it a point to commit to documenting everything along this journey - both good and bad. This is life and shitty things happen all the time. People fuck up. Mistakes happen. I just wish they wouldn't happen so often in my world but hey - what can ya do!
At least the softball size welt that I usually get from my vaccination didn't seem as bad this time around. I didn't really have a lot of pain and you can see that the spot isn't as large. Perhaps there is a "sweet spot" on my arm that when injected into that specific area, my reaction isn't as severe.
To close out my thoughts for tonight, I'd just like to take a moment to talk to all the "social" smokers out there. I can proudly say that I have no regrets in my life. I did everything I did because at the time I did it, I thought it was the "right" thing to do and I trust myself and know that I've learned from many, many mistakes I've made along the way. One of the things I would do differently if I could do it over would be to never have been a "social" smoker in my earlier years.
I was never a smoker. However, when I would drink if someone was holding a cigarette I would take a few drags. Why? Why did I ever do this? Honestly - what is the point? What did it get me? I haven't touched a cigarette in about 6 years...this isn't because of Cancer. This is because I realized how incredibly fucking dumb it was. It didn't do anything for me but give me a headache and a sore throat. I was scared it was going to fuck up my voice. Ha.
I've had way too many heated discussions with friends and loved ones regarding the dangers of only being a "social" smoker. The sad fact of the matter is, no one understands unless they actually have to go through something themselves. I haven't touched a cigarette in years - yet I wound up with Cancer in my lung. It's so unfair...yet I wouldn't wish this fucking disease on my worst enemy. However, I do wish I could make people understand that every time you inhale all those poisons/chemicals, you're that much closer to having your worst nightmares come true.
This isn't a joke. It's a cold and extremely lonely place when you're the one the doctor is showing the scans of a malignant tumor to. When you're the one questioning how much longer you're expected to live. When you're the one sitting in the waiting room of a hospital, watching dying people sitting across from you...and to your left...and to your right...all hanging onto the hope that they might get a few more years, or months...or days.
It's especially lonely when you watch people you care so much about voluntarily stick that cigarette in their mouth after they were hysterically crying about how broken they were knowing you have Cancer again only a few months ago. I honestly wish I was without a fucking care in the world and could have the option to light up whenever I felt like it. Why not? People do it all the time. But at what cost? I guess they never really think there is a cost until something horrible happens to them. Clearly it's not enough when something horrible happens to someone they love and apparently care so much about.
There are many things in this life that I have questioned and will continue to question. That will forever remain one of them. How someone could be so close to another that they go to every doctor's appointment. Sit through every anxiety attack. Watch every tear fall from that other person's eyes. See all the pain and torment that other person has as they battle a life-threatening disease that they got stuck with for no apparent and good reason...yet they voluntarily put themselves at risk for the same disaster to happen to them. I don't understand. It doesn't make any sense. It makes me so extremely angry - and it always will. I'm the one that wound up with this, yet I'm the one that always tried to keep it away.
Think before you act, people. Is it really worth it in the end?
And as for the 10 additional vials of blood...all I have to say to you is...
Monday, October 10, 2011
4th vaccination.
Today I was scheduled for my 4th vaccination and a visit with my Oncologist. I arrived approximately 45 minutes early to my appointment with my doctor and was (un)pleasantly surprised that she had scheduled me for some blood work prior to my meeting with her. YAY! I'm not sure if it was because I didn't have much time to react or because I'm (gasp!) actually getting better with getting stabbed but I did super well! No crying, no weird anxiety...it was actually as if I could handle it. Could I possibly be getting over my phobia?
I know that when people have anxiety towards a certain thing a lot of times they're treated by being exposed to whatever it is that they're anxious about. Maybe by constantly having to deal with this crap it's actually helping me get over it or at least make it tolerable for me. We'll see.
I was in and out with the blood work, vitals and finally meeting with my doctor. I made sure to complain about that nasty bitch I had to meet with in her place the last time I had a check up. She told me she "wasn't surprised" with what I had to say - I'm guessing others had the same complaints I did. Like, what the hell? If people are complaining about her then why keep her on this Trial? It's not my fault she's a miserable shrew. Whatev. I told my doctor that if for some reason in the future she wasn't available I would absolutely not meet with that other asshole. Done and done.
I also told her that my ribs were still killing me. Lately they feel like they're even more sore then they were last month (not to mention I'm still all numb). Perhaps it's because I'm not really free-boobin' it a lot lately. I'm working and then going out after and not really lettin' it all hang out until I get home at night. Anyway, my doctor decided to check them out by pressing her fingers into the sore spots...! So not only were they sore before she checked them but they were that much worse after I left my appointment with her. Always a good time at Sloan. Lucky for me I had hours of bra-wearing time left...
Because they have to wait for the results of my blood work to come back on days when I meet with the doctor before they can thaw out my vaccination, I was informed that it would take an hour and 1/2 to two hours before I could get my injection.
My dad and I headed to dinner, walked around the city, got some cupcakes at Crumbs and sat at Barnes and Noble for a bit. We headed back and were called in right away...where we wound up sitting for an hour more...waiting. How I love wasting time.
The vaccination was quick and wasn't as painful as it normally is. Even now, over 3 hours later, my arm isn't red or swollen and doesn't really hurt. I guess I'll see what it looks like tomorrow. I told the nurse to give me the shot a little lower then she normally does because I have my first real vocal gig since surgery coming up on Wednesday with my ladies, The Bar-Top Bandits (look us up), and I'm going to cover up the giant blotch with a bandanna tied around my arm.
At least I can try to look decent since my stupid voice might not be full force. My allergies are TERRIBLE. My ears are clogged, my throat is scratchy, my nose is running, my head is congested and my face is schnozy. Yes...schnozy. It's not a good thing. I might as well have a nasty cold. Leave it to me to have a serious vocal performance and be sick for it. I remember in high school I was legit sick for every single show I was in. Every single one. I would be backstage chugging tea with lemon and honey and sucking like I've never sucked before on cough drop after cough drop after cough drop. Something tells me I'm going to have some deja vu on Wednesday. Not good. Hopefully it all goes well.
I have my next appointment at Sloan next Monday...at 6:45pm. So I get to work a full work day then rush into the city to get 10 vials of blood drawn! What a great day that will be! I guess I just need to take it one day at a time. Today wasn't terrible. And after this next appointment I won't have another one until early December. I guess that's something to look forward to...although I'll be getting my first CT Scan's since I started the Trial at that time. I'm both nervous and excited to get the scans. Nervous because of what might or might not show up and excited for what might or might not show up.
Hopefully I can start my Cancer-free anniversaries again. Fingers crossed.
So now I'm home, relaxing...feet up, binding bra off...blowing my nose every 9 minutes, sneezing every 7 minutes and dabbing the tears seeping out of my watery eyes every 4 minutes. These crappy Kleenex tissues feel like sandpaper and I can't stop peeing because I must have drank 38 cups of tea today. Ah, all in a day in the life of a chick with bad allergies.
At least I'm in the company of a little man who wants to make out despite my appearance...
I know that when people have anxiety towards a certain thing a lot of times they're treated by being exposed to whatever it is that they're anxious about. Maybe by constantly having to deal with this crap it's actually helping me get over it or at least make it tolerable for me. We'll see.
I was in and out with the blood work, vitals and finally meeting with my doctor. I made sure to complain about that nasty bitch I had to meet with in her place the last time I had a check up. She told me she "wasn't surprised" with what I had to say - I'm guessing others had the same complaints I did. Like, what the hell? If people are complaining about her then why keep her on this Trial? It's not my fault she's a miserable shrew. Whatev. I told my doctor that if for some reason in the future she wasn't available I would absolutely not meet with that other asshole. Done and done.
I also told her that my ribs were still killing me. Lately they feel like they're even more sore then they were last month (not to mention I'm still all numb). Perhaps it's because I'm not really free-boobin' it a lot lately. I'm working and then going out after and not really lettin' it all hang out until I get home at night. Anyway, my doctor decided to check them out by pressing her fingers into the sore spots...! So not only were they sore before she checked them but they were that much worse after I left my appointment with her. Always a good time at Sloan. Lucky for me I had hours of bra-wearing time left...
Because they have to wait for the results of my blood work to come back on days when I meet with the doctor before they can thaw out my vaccination, I was informed that it would take an hour and 1/2 to two hours before I could get my injection.
My dad and I headed to dinner, walked around the city, got some cupcakes at Crumbs and sat at Barnes and Noble for a bit. We headed back and were called in right away...where we wound up sitting for an hour more...waiting. How I love wasting time.
The vaccination was quick and wasn't as painful as it normally is. Even now, over 3 hours later, my arm isn't red or swollen and doesn't really hurt. I guess I'll see what it looks like tomorrow. I told the nurse to give me the shot a little lower then she normally does because I have my first real vocal gig since surgery coming up on Wednesday with my ladies, The Bar-Top Bandits (look us up), and I'm going to cover up the giant blotch with a bandanna tied around my arm.
At least I can try to look decent since my stupid voice might not be full force. My allergies are TERRIBLE. My ears are clogged, my throat is scratchy, my nose is running, my head is congested and my face is schnozy. Yes...schnozy. It's not a good thing. I might as well have a nasty cold. Leave it to me to have a serious vocal performance and be sick for it. I remember in high school I was legit sick for every single show I was in. Every single one. I would be backstage chugging tea with lemon and honey and sucking like I've never sucked before on cough drop after cough drop after cough drop. Something tells me I'm going to have some deja vu on Wednesday. Not good. Hopefully it all goes well.
I have my next appointment at Sloan next Monday...at 6:45pm. So I get to work a full work day then rush into the city to get 10 vials of blood drawn! What a great day that will be! I guess I just need to take it one day at a time. Today wasn't terrible. And after this next appointment I won't have another one until early December. I guess that's something to look forward to...although I'll be getting my first CT Scan's since I started the Trial at that time. I'm both nervous and excited to get the scans. Nervous because of what might or might not show up and excited for what might or might not show up.
Hopefully I can start my Cancer-free anniversaries again. Fingers crossed.
So now I'm home, relaxing...feet up, binding bra off...blowing my nose every 9 minutes, sneezing every 7 minutes and dabbing the tears seeping out of my watery eyes every 4 minutes. These crappy Kleenex tissues feel like sandpaper and I can't stop peeing because I must have drank 38 cups of tea today. Ah, all in a day in the life of a chick with bad allergies.
At least I'm in the company of a little man who wants to make out despite my appearance...
Wednesday, October 5, 2011
What are we waiting for?
It's been a while since I wrote last and I'm not sure if that's a good or bad thing. Perhaps it's good since I don't have any new and crappy things to say about myself. My ribs still hurt. My scar is still jaggedly placed on my upper back. I'm still "enrolled" in the Trial. I'm still slowly but surely regaining full use of my lungs. It still feels weird to take a deep breath. I'm still numb under my left arm and down around my side. Everything is still the same other then the fact that I guess I'm feeling a little emotional with all the news surrounding the recent passing of Apple co-founder, Steve Jobs.
Being on the Committee for my town's Relay For Life (largest fundraiser The American Cancer Society holds each year...look it up if you don't know what it is...it's amazing) every year I'm always utilizing the phrase that everyone has been touched by Cancer in some way. Whether a friend, relative, colleague, friend of a friend, or they themselves have the disease, everyone is affected by this killer in one way or another. It doesn't discriminate. Cancer attacks every race, gender, age, religion. Truly Good people...brilliant people...undeserving people...are beaten down by this disease each day. It's absolutely heartbreaking when you think about it.
Imagine a man who helped shaped the face of technology as we know it today - a visionary in his field - dying at the premature age of 56. I guess I just can't help but wonder what else he could've possibly done in his lifetime had his existence not been claimed by Cancer. Every day people are feeling the sting of being told You have Cancer yet we continue not to really live life. We continue to pollute our bodies with toxins. We continue to stay in relationships that make us unhappy. We continue to stay at jobs we hate. We continue to hold back telling people we love them because we're scared or hurt or have too much pride. We continue to just go through the motions instead of truly enjoying and living life to the absolute fullest. I know I'm as guilty as any with this reality. But why? What are we afraid of? What are we waiting for? It will be too late once we're dead.
I can honestly say that lately I've definitely been doing certain things a lot more then I used to. I sing at every chance I get. In the car. In my room. At work. In the shower. At the top of my lungs. Under my breath. Into a mic. Into a hairbrush. I almost lost something that means so much to me that I tear up just thinking about what could've been had something just gone slightly different during my surgery.
I go out more. I take more chances. I say yes more then I say no. I find myself out of my element a little more each day and find myself actually enjoying it. Maybe I'm finally beginning to realize life is more then just waking up, going to work, eating a boring meal, sitting in traffic, going to sleep. Yeah, maybe it sucks if I'm tired the next day but having a great time the night before with friends, laughing, savoring the simple pleasures this life can actually throw at you might be worth the heavy eyelids.
I've said many times that this fucked up disease hasn't changed me in many ways - especially the way I viewed the world. Maybe I was wrong. Lately I do seem to stare at the colors a sunset sky provides a little longer. I drive with the windows down to feel the breeze instead of worrying if it will mess up my hair. I'm late to work more often because I'll sit in my car in the parking lot to finish the end of a song I love to hear. They're not big changes. No one would even notice I'm any different - I barely do. But it's a start. It's something. Maybe it'll lead to something a little more significant and maybe it won't. Who knows. But it's something.
Being on the Committee for my town's Relay For Life (largest fundraiser The American Cancer Society holds each year...look it up if you don't know what it is...it's amazing) every year I'm always utilizing the phrase that everyone has been touched by Cancer in some way. Whether a friend, relative, colleague, friend of a friend, or they themselves have the disease, everyone is affected by this killer in one way or another. It doesn't discriminate. Cancer attacks every race, gender, age, religion. Truly Good people...brilliant people...undeserving people...are beaten down by this disease each day. It's absolutely heartbreaking when you think about it.
Imagine a man who helped shaped the face of technology as we know it today - a visionary in his field - dying at the premature age of 56. I guess I just can't help but wonder what else he could've possibly done in his lifetime had his existence not been claimed by Cancer. Every day people are feeling the sting of being told You have Cancer yet we continue not to really live life. We continue to pollute our bodies with toxins. We continue to stay in relationships that make us unhappy. We continue to stay at jobs we hate. We continue to hold back telling people we love them because we're scared or hurt or have too much pride. We continue to just go through the motions instead of truly enjoying and living life to the absolute fullest. I know I'm as guilty as any with this reality. But why? What are we afraid of? What are we waiting for? It will be too late once we're dead.
I can honestly say that lately I've definitely been doing certain things a lot more then I used to. I sing at every chance I get. In the car. In my room. At work. In the shower. At the top of my lungs. Under my breath. Into a mic. Into a hairbrush. I almost lost something that means so much to me that I tear up just thinking about what could've been had something just gone slightly different during my surgery.
I go out more. I take more chances. I say yes more then I say no. I find myself out of my element a little more each day and find myself actually enjoying it. Maybe I'm finally beginning to realize life is more then just waking up, going to work, eating a boring meal, sitting in traffic, going to sleep. Yeah, maybe it sucks if I'm tired the next day but having a great time the night before with friends, laughing, savoring the simple pleasures this life can actually throw at you might be worth the heavy eyelids.
I've said many times that this fucked up disease hasn't changed me in many ways - especially the way I viewed the world. Maybe I was wrong. Lately I do seem to stare at the colors a sunset sky provides a little longer. I drive with the windows down to feel the breeze instead of worrying if it will mess up my hair. I'm late to work more often because I'll sit in my car in the parking lot to finish the end of a song I love to hear. They're not big changes. No one would even notice I'm any different - I barely do. But it's a start. It's something. Maybe it'll lead to something a little more significant and maybe it won't. Who knows. But it's something.
Wednesday, September 7, 2011
My first day back
It seems that with each vaccination I get, the swelling and red blotch on my arm gets a little larger. Sadly, I didn't take a photo of what my arm looked like this last time around but it was probably around the size of the bottom of a coffee mug (if you were to press it to your arm and trace the circumference with a pen). That is most definitely larger then the first two injections I received. I'm hoping that as the weeks go by and I continue to get vaccinations my entire arm doesn't blow up so that I look like I have Elephantitis. I guess we shall see.
My last few days of freedom before returning to work proved to be pretty damn good as I had a trip to Miami with my ladies booked. I was able to get a nice tan (that I apparently couldn't acquire the entire summer while laying in my yard), go out and have fun with my friends before returning to the real world. Some highlights of the trip include:
* Peeing in a cup so my friend could pore it on her hand in order to subside the burning feeling of her newly acquired jellyfish sting
* Receiving VIP seats and free drinks from old Indian men whom were quite fond of a few of us (especially my cousin who was probably 2ft taller then the smitten one, resting his head on her bosom while trying to dance with her)
* My girls getting hit on by two, much older DRUNK gentlemen...one of which was pointing to my phone which I was holding out in front of me but wound up basically poking me in my chest. Way to cop a free feel, buddy.
* One of my wonderful friends (whom shall remain nameless) getting so drunk that she fell asleep at the bar one night and wound up puking all over a cab one of the following nights...
Good times, people. Good times...
Which leads me into my first day back at work which was yesterday, 9/6. One would think that being out for basically 2 months I would receive some help on my first day back. NOPE! Not that lucky, sucker! My colleague had a scheduled week vacation this week which is fine...but I was informed that at least I would have one person here to help me as I returned to the office. I think it was a FINE idea to let me fend for myself my very first day back at work - especially not knowing what the hell was going on, what orders were open, who was working, etc. This is the company I work for. They really care a great deal for their associates. Clearly.
On top of all of that, I also brought home a stomach bug from Miami...causing me to be in the bathroom every 20 minutes with shit (literally) coming out both sides of me (I know, I'm very lady-like) as well as horrendous stomach pains. I was legit sitting at my desk with my work pants completely unbuttoned and un-zipped because I couldn't deal with any pressure on my belly.
Needless to say, my first day back sucked huge hairy-ass balls.
On a lighter note, I was asked to sing The National Anthem this coming Sunday for 9/11 at Asbury Park's Oyster Festival! I'm excited just to go to the festival but singing at it is even better. Especially being able to do something patriotic on a day such as that. It always brings back memories of being in high school 10 years ago (yikes, I'm showing my age) and watching everything happen on a small TV in the Library of my school. Crazy.
My next appointments at Sloan aren't until October which I am SUPER happy about. At least I won't have to go for another month.
My last few days of freedom before returning to work proved to be pretty damn good as I had a trip to Miami with my ladies booked. I was able to get a nice tan (that I apparently couldn't acquire the entire summer while laying in my yard), go out and have fun with my friends before returning to the real world. Some highlights of the trip include:
* Peeing in a cup so my friend could pore it on her hand in order to subside the burning feeling of her newly acquired jellyfish sting
* Receiving VIP seats and free drinks from old Indian men whom were quite fond of a few of us (especially my cousin who was probably 2ft taller then the smitten one, resting his head on her bosom while trying to dance with her)
* My girls getting hit on by two, much older DRUNK gentlemen...one of which was pointing to my phone which I was holding out in front of me but wound up basically poking me in my chest. Way to cop a free feel, buddy.
* One of my wonderful friends (whom shall remain nameless) getting so drunk that she fell asleep at the bar one night and wound up puking all over a cab one of the following nights...
Good times, people. Good times...
Which leads me into my first day back at work which was yesterday, 9/6. One would think that being out for basically 2 months I would receive some help on my first day back. NOPE! Not that lucky, sucker! My colleague had a scheduled week vacation this week which is fine...but I was informed that at least I would have one person here to help me as I returned to the office. I think it was a FINE idea to let me fend for myself my very first day back at work - especially not knowing what the hell was going on, what orders were open, who was working, etc. This is the company I work for. They really care a great deal for their associates. Clearly.
On top of all of that, I also brought home a stomach bug from Miami...causing me to be in the bathroom every 20 minutes with shit (literally) coming out both sides of me (I know, I'm very lady-like) as well as horrendous stomach pains. I was legit sitting at my desk with my work pants completely unbuttoned and un-zipped because I couldn't deal with any pressure on my belly.
Needless to say, my first day back sucked huge hairy-ass balls.
On a lighter note, I was asked to sing The National Anthem this coming Sunday for 9/11 at Asbury Park's Oyster Festival! I'm excited just to go to the festival but singing at it is even better. Especially being able to do something patriotic on a day such as that. It always brings back memories of being in high school 10 years ago (yikes, I'm showing my age) and watching everything happen on a small TV in the Library of my school. Crazy.
My next appointments at Sloan aren't until October which I am SUPER happy about. At least I won't have to go for another month.
Friday, August 26, 2011
It's a miracle!
Yesterday was my 2nd vaccination for the Trial...and things actually ran smoothly! It might be a small miracle. I called before I left the house to say I was on my way, the lab called me back within a few minutes to say that I was checked in and they had began thawing out my vaccination. We arrived there and only waited around 10 minutes before being called in. The nurse had everything ready so I was in and out of the lab within 5 minutes. The shot wasn't nearly as painful this time going in, I didn't cry and my anxiety level was at it's minimum. Hooray! This is me, happy (for once) after getting my vaccination:
What happened the last time was that my arm was totally in pain right after getting the shot. This time, it really didn't hurt. Today, though - my arm hurts bad. The last time it lasted about 3 days of me not really being able to sleep on it or touch it. Aside from the pain I also got a little swelling and a red blotch about the size of a silver dollar. BUT, no flu-like symptoms or anything crazy so I'm happy about that. Hopefully it stays that way and as I continue to get the vaccinations it doesn't get worse.
Other then my first really fabulous visit to Sloan yesterday, I don't really have any new news. I can say that my ribs are still very sensitive and the same areas that were numb, still are. It doesn't help that I've been getting back to my normal social life where wearing a bra is a necessity. This might be causing my ribs to remain in pain constantly. Who knows. My scar remains pretty gnarly looking and hasn't really started to look any better then it did a month ago. The arrow is pointing to my vaccination area and if you look closely, you can still see some bruising left from my freakin' surgery over 8 weeks ago. My body is nuts. You'd think at least the bruises would have went away by now.
In 3 days I will have been out for 9 weeks. Have I received my FIRST Disability check as of yet? NOPE! This is just getting to the point of insanity now. Seriously, anyone going out on Disability in the state of New Jersey needs to save their pennies for months before deciding to get sick (as if we have a choice); otherwise, you'll be dancing for dollars as soon as you're able to walk. It's absurd.
My next vaccination is this coming Wednesday since I will be jet-setting to Miami on Thursday morning. I'm hoping things will go just as quick and easy as they did this week but with Sloan it's always a gamble.
What happened the last time was that my arm was totally in pain right after getting the shot. This time, it really didn't hurt. Today, though - my arm hurts bad. The last time it lasted about 3 days of me not really being able to sleep on it or touch it. Aside from the pain I also got a little swelling and a red blotch about the size of a silver dollar. BUT, no flu-like symptoms or anything crazy so I'm happy about that. Hopefully it stays that way and as I continue to get the vaccinations it doesn't get worse.
Other then my first really fabulous visit to Sloan yesterday, I don't really have any new news. I can say that my ribs are still very sensitive and the same areas that were numb, still are. It doesn't help that I've been getting back to my normal social life where wearing a bra is a necessity. This might be causing my ribs to remain in pain constantly. Who knows. My scar remains pretty gnarly looking and hasn't really started to look any better then it did a month ago. The arrow is pointing to my vaccination area and if you look closely, you can still see some bruising left from my freakin' surgery over 8 weeks ago. My body is nuts. You'd think at least the bruises would have went away by now.
In 3 days I will have been out for 9 weeks. Have I received my FIRST Disability check as of yet? NOPE! This is just getting to the point of insanity now. Seriously, anyone going out on Disability in the state of New Jersey needs to save their pennies for months before deciding to get sick (as if we have a choice); otherwise, you'll be dancing for dollars as soon as you're able to walk. It's absurd.
My next vaccination is this coming Wednesday since I will be jet-setting to Miami on Thursday morning. I'm hoping things will go just as quick and easy as they did this week but with Sloan it's always a gamble.
Thursday, August 18, 2011
First Vaccination = Day from Hell.
Today I was scheduled to receive my first vaccination for the Trial. Along with this came more blood work and a visit with one of the doctor's. My first appointment was scheduled at 8:45am, my second at 9pm and my third at 9:30am - all in the same building this time. I was thinking to myself that perhaps this might be an OK day being that I wasn't going to be there super long. Why is it that I find I'm perpetually wrong when it comes to anything having to do with going to Sloan?
My dad and I got there on time this morning where I was stabbed in a not-so-pleasant vein in my forearm for my (gag) second set of blood work of the week. I cried. It was no fun. At this point while I'm calming down the nurse proceeds to chat about the process going along with getting the vaccinations and I hear her say that it will take about 2-3 hours so I should come back. Um, excuse me?
The nurse goes on to explain that they can't thaw out the vaccination until I physically "check in" or after I see a doctor and they give the lab the go-ahead. What the fuck is the point of making an appointment if it means diddly-squat? I just don't understand. Call me crazy but if I make an appointment for a certain time, I'm going to think it's for that time - not for 2-3 hours later. So now I'm pissed off. But whatever. I'll get over it. I head up to the 5th floor to meet with a doctor for whatever reason that may be since I already saw my Oncologist three days ago (she wasn't around today so she scheduled me to meet with her colleague).
I stop at the desk to tell them I'm there and ask how long it'll take - being that again, nothing is ever on time at that place. The girl behind the desk says the doctor is running on schedule and I'll be called back shortly. An hour later I'm still waiting. I finally get called back into the room to meet with the doctor...where I proceed to wait for another 30 minutes. At this point my blood is boiling. It's like you have to go in search for someone to tell you what the fuck is going on since no one ever has the common courtesy to tell you that it's going to take a little longer then expected. Notice how happy I look.
FINALLY the doctor comes in...with a chip on her shoulder. Great. I attempt to ask why I'm meeting with her since I already saw my Oncologist three days prior. She says it's part of the protocol that I need to meet with a doctor to get a physical and get my blood pressure, temperature, etc. checked (which I already did prior to seeing her since every time you meet with a doctor you get your vitals taken). She proceeds to listen to my heart for a total of 60 seconds. I then ask why no one explained to me that every time I would have to get a vaccination it wouldn't be ready at the time of my appointment. She tells me it's part of the protocol. I tell her that I'm not trying to be nasty here but I do work full time and I don't have all the time in the world to take off of work to sit at Sloan for hours after my appointments are scheduled for. I ask if I could call when I'm on my way in to speed up the process so I'm not just sitting around for hours waiting for something that will take 5 minutes. She cuts me off mid-sentence with a bitch-ass attitude stating that I signed a Consent Form and this is the protocol and basically if I don't like it I can withdrawal from the Trial. Um, what the fuck is your problem you nasty BITCH. Seriously, this is the first fucking time I'm doing something like this, I have no idea what is going on, I'm practically donating my fucking body to science to benefit YOU people and you're making it seem like YOU'RE doing ME a favor? I don't think so. It's like they really make it difficult for you to feel good about the decision you made...and that really makes me upset. It took me such a long time to finally feel good about saying Yes to this and now I feel like I'm starting to regret my decision. I have no regrets in my life and I don't want to start now.
Is it me or do I always seem to have some sort of problem? I just seriously cannot understand why nothing is ever easy in my life. I just have to laugh about it because if I don't I'll go out of my mind.
She leaves the room without saying goodbye, or thank you, or talk to you soon, or anything. Just leaves. With the same attitude she came in with. Shortly thereafter the same nurse I spoke with on the phone a few weeks ago to discuss the Trial comes in to speak with me further. I ask her the same questions and receive different answers. I explain to her that I'm not in the least trying to be difficult - just trying to understand what the fuck is going on. My dad was about to blow a gasket at this point. He told me he wanted to knock the doctor's teeth out...with good reason. She would've deserved it. As if it isn't stressful enough to have this disease, come into the city, get told you'll be waiting 3 hours past the time of your actual appointment...to receive some no-name drugs getting pumped into your body with unknown side effects...at least be a little nice. Is it really that difficult? Apparently so.
The nurse calls the lab to see if my vaccination was called in yet - no. Of course not! Why would it be?! She tells me they'll call me when it's ready. My dad and I go out to brunch, walk around the city a bit, buy some books at Barnes and Noble and head back to Sloan. Two more hours have surpassed. I check in at the desk when I get back to the 4th Floor and they tell me they're not ready yet. Another 45 minutes goes by before they call me back. At this point I just want to get the fucking thing over with already and get the hell home.
I give my normal explanation of how I have a phobia of needles and to please just get it over with as quickly as possible. The vaccination hurts - a lot more then I thought it would. It's not the needle, but whatever it is that's being injected. It stings and makes my arm sore. The nurse asks me to stay for 10 minutes just to make sure I don't get any severe side effects. It's after 1:15pm when I'm walking out the door. I arrived at Sloan a little after 8am (with my last appointment of the day scheduled for 9:30am).
If this isn't torture, I don't know what is. I can understand that there are times things happen. Sometimes you can be running behind - I get it. However, when you're the one that's waiting hours at least 98% of the time you go, it can get a little fucking frustrating.
While my dad and I were walking to the car, my arm started to hurt. It's really sore now as I write this, hours later. BUT, it was explained to me that practically everyone in the Trial developed swelling and redness at the injection site - I don't have this thus far. Watch, tomorrow I'll wake up and my entire arm will be double the size it normally is. That's my luck, folks!
Speaking of my luck (or lack thereof), I called Disability two days ago to ask why I still have yet to see my FIRST check. They proceeded to tell me I was missing the Employer section of my paperwork. Oh really? You mean the same Employer section that was faxed along with EVERYTHING ELSE back in JUNE? So - I faxed everything once again and have to call back tomorrow to make sure they got everything this time. Are you kidding me? I haven't been paid in almost 8 weeks, people. I am legit broke. If you see me on a local street corner, don't be alarmed. This is what my life has amounted to.
In a nutshell - today was not the most pleasant. Some of my friends and my mom suggested rethinking my decision if this is what it's going to be like. I really don't want to pull out of this. It took me a long time to come to terms with the fact that I was going to put myself through my own personal Hell and I was actually content with that...until today. I wish someone could just explain to me why things in my life never run smoothly. I really try to make it happen! It just never does. I already can't wait for these next 84 weeks to end.
My dad and I got there on time this morning where I was stabbed in a not-so-pleasant vein in my forearm for my (gag) second set of blood work of the week. I cried. It was no fun. At this point while I'm calming down the nurse proceeds to chat about the process going along with getting the vaccinations and I hear her say that it will take about 2-3 hours so I should come back. Um, excuse me?
The nurse goes on to explain that they can't thaw out the vaccination until I physically "check in" or after I see a doctor and they give the lab the go-ahead. What the fuck is the point of making an appointment if it means diddly-squat? I just don't understand. Call me crazy but if I make an appointment for a certain time, I'm going to think it's for that time - not for 2-3 hours later. So now I'm pissed off. But whatever. I'll get over it. I head up to the 5th floor to meet with a doctor for whatever reason that may be since I already saw my Oncologist three days ago (she wasn't around today so she scheduled me to meet with her colleague).
I stop at the desk to tell them I'm there and ask how long it'll take - being that again, nothing is ever on time at that place. The girl behind the desk says the doctor is running on schedule and I'll be called back shortly. An hour later I'm still waiting. I finally get called back into the room to meet with the doctor...where I proceed to wait for another 30 minutes. At this point my blood is boiling. It's like you have to go in search for someone to tell you what the fuck is going on since no one ever has the common courtesy to tell you that it's going to take a little longer then expected. Notice how happy I look.
FINALLY the doctor comes in...with a chip on her shoulder. Great. I attempt to ask why I'm meeting with her since I already saw my Oncologist three days prior. She says it's part of the protocol that I need to meet with a doctor to get a physical and get my blood pressure, temperature, etc. checked (which I already did prior to seeing her since every time you meet with a doctor you get your vitals taken). She proceeds to listen to my heart for a total of 60 seconds. I then ask why no one explained to me that every time I would have to get a vaccination it wouldn't be ready at the time of my appointment. She tells me it's part of the protocol. I tell her that I'm not trying to be nasty here but I do work full time and I don't have all the time in the world to take off of work to sit at Sloan for hours after my appointments are scheduled for. I ask if I could call when I'm on my way in to speed up the process so I'm not just sitting around for hours waiting for something that will take 5 minutes. She cuts me off mid-sentence with a bitch-ass attitude stating that I signed a Consent Form and this is the protocol and basically if I don't like it I can withdrawal from the Trial. Um, what the fuck is your problem you nasty BITCH. Seriously, this is the first fucking time I'm doing something like this, I have no idea what is going on, I'm practically donating my fucking body to science to benefit YOU people and you're making it seem like YOU'RE doing ME a favor? I don't think so. It's like they really make it difficult for you to feel good about the decision you made...and that really makes me upset. It took me such a long time to finally feel good about saying Yes to this and now I feel like I'm starting to regret my decision. I have no regrets in my life and I don't want to start now.
Is it me or do I always seem to have some sort of problem? I just seriously cannot understand why nothing is ever easy in my life. I just have to laugh about it because if I don't I'll go out of my mind.
She leaves the room without saying goodbye, or thank you, or talk to you soon, or anything. Just leaves. With the same attitude she came in with. Shortly thereafter the same nurse I spoke with on the phone a few weeks ago to discuss the Trial comes in to speak with me further. I ask her the same questions and receive different answers. I explain to her that I'm not in the least trying to be difficult - just trying to understand what the fuck is going on. My dad was about to blow a gasket at this point. He told me he wanted to knock the doctor's teeth out...with good reason. She would've deserved it. As if it isn't stressful enough to have this disease, come into the city, get told you'll be waiting 3 hours past the time of your actual appointment...to receive some no-name drugs getting pumped into your body with unknown side effects...at least be a little nice. Is it really that difficult? Apparently so.
The nurse calls the lab to see if my vaccination was called in yet - no. Of course not! Why would it be?! She tells me they'll call me when it's ready. My dad and I go out to brunch, walk around the city a bit, buy some books at Barnes and Noble and head back to Sloan. Two more hours have surpassed. I check in at the desk when I get back to the 4th Floor and they tell me they're not ready yet. Another 45 minutes goes by before they call me back. At this point I just want to get the fucking thing over with already and get the hell home.
I give my normal explanation of how I have a phobia of needles and to please just get it over with as quickly as possible. The vaccination hurts - a lot more then I thought it would. It's not the needle, but whatever it is that's being injected. It stings and makes my arm sore. The nurse asks me to stay for 10 minutes just to make sure I don't get any severe side effects. It's after 1:15pm when I'm walking out the door. I arrived at Sloan a little after 8am (with my last appointment of the day scheduled for 9:30am).
If this isn't torture, I don't know what is. I can understand that there are times things happen. Sometimes you can be running behind - I get it. However, when you're the one that's waiting hours at least 98% of the time you go, it can get a little fucking frustrating.
While my dad and I were walking to the car, my arm started to hurt. It's really sore now as I write this, hours later. BUT, it was explained to me that practically everyone in the Trial developed swelling and redness at the injection site - I don't have this thus far. Watch, tomorrow I'll wake up and my entire arm will be double the size it normally is. That's my luck, folks!
Speaking of my luck (or lack thereof), I called Disability two days ago to ask why I still have yet to see my FIRST check. They proceeded to tell me I was missing the Employer section of my paperwork. Oh really? You mean the same Employer section that was faxed along with EVERYTHING ELSE back in JUNE? So - I faxed everything once again and have to call back tomorrow to make sure they got everything this time. Are you kidding me? I haven't been paid in almost 8 weeks, people. I am legit broke. If you see me on a local street corner, don't be alarmed. This is what my life has amounted to.
In a nutshell - today was not the most pleasant. Some of my friends and my mom suggested rethinking my decision if this is what it's going to be like. I really don't want to pull out of this. It took me a long time to come to terms with the fact that I was going to put myself through my own personal Hell and I was actually content with that...until today. I wish someone could just explain to me why things in my life never run smoothly. I really try to make it happen! It just never does. I already can't wait for these next 84 weeks to end.
Monday, August 15, 2011
Signed my life away.
Today were my first appointments for the Trial. We left at 6am (FUN) and by the grace of God ALL my appointments were on time! For some reason, my wonderful stale-watered-down-jello-contrast drink that they have me drink a gallon of for my CT Scans was exceptionally disgusting this morning. Notice the pleasant look on my face (and the lack of makeup since I was up at the crack):
The CT's went well - I got a wet reading today from my Oncologist and she said everything was good. There was a fluid mass in my lung but apparently that's considered normal after a surgery, plus another new nodule in my kidney. They're going to monitor it but it's so small that they think it's nothing. Let's hope it stays like that.
I didn't take any xanax today - which is a first for me when going to Sloan so I was a little nervous I would pass out in the chair. Surprisingly, I didn't even cry! This is also a first for me. I was proud of myself. After the CT's were done, I got my usual allergic reaction to the contrast - a pencil eraser sized hive by my right eye. I have been getting the same allergic reaction for almost 3 years since my first CT Scan and have been taking pre-meds before every CT since. Today was the first day they made me stay for an extra 20 minutes after my scans just to make sure I wouldn't go into a crazy full allergic breakdown. Apparently one day my entire body could blow up into one giant hive. That would be just my luck. Needless to say, I wasn't happy about keeping the stupid IV in past the amount of time I needed to but because they gave me an extra bag of fluids I noticed that my reaction went down a lot quicker then it usually does.
I headed over to my second appointment for my blood work at the second location of the day. I warned the nurse of my phobia, armed myself with a giant cup of Orange Juice and positioned my hand around my dads fingers to squeeze them off. After she put the 7 vials in the cup holder next to me I decided it would probably be best if I left my eyes closed the remainder of the time. I didn't pass out, I cried just a little and I was able to walk out of there within 5 minutes. Go me! Maybe I'm getting better at this? Who knows. I hope so because I'm going to be going through this shit the rest of my life.
After lunch, my dad and I headed over to the third location of the day to meet with my Oncologist and sign my life away.
I think I made the "right" decision. Let's hope nothing negative comes of this but I have to say, I do have a good feeling about everything and I'm happy with the decision I made. My next appointment is in 3 days to get my first vaccination. I'm really hoping I don't get any weird side effects from it. They stated that really the only thing that has been happening to other patients is some swelling and redness by the injection site. But it is a vaccination so I could develop some flu-like symptoms as well. That would suck because I'm scheduled for my third week in a row vaccination the day before I leave for Miami. If I'm sick for that trip I'll be PISSED. My entire summer sucked - I NEED this vacation. I guess we shall see.
So - I'm stuck for 84 weeks in the Trial. Of course I could pull out anytime I want but what would be the point of that? I need to stick it out and I will. I'm just not really looking forward to it.
The CT's went well - I got a wet reading today from my Oncologist and she said everything was good. There was a fluid mass in my lung but apparently that's considered normal after a surgery, plus another new nodule in my kidney. They're going to monitor it but it's so small that they think it's nothing. Let's hope it stays like that.
I didn't take any xanax today - which is a first for me when going to Sloan so I was a little nervous I would pass out in the chair. Surprisingly, I didn't even cry! This is also a first for me. I was proud of myself. After the CT's were done, I got my usual allergic reaction to the contrast - a pencil eraser sized hive by my right eye. I have been getting the same allergic reaction for almost 3 years since my first CT Scan and have been taking pre-meds before every CT since. Today was the first day they made me stay for an extra 20 minutes after my scans just to make sure I wouldn't go into a crazy full allergic breakdown. Apparently one day my entire body could blow up into one giant hive. That would be just my luck. Needless to say, I wasn't happy about keeping the stupid IV in past the amount of time I needed to but because they gave me an extra bag of fluids I noticed that my reaction went down a lot quicker then it usually does.
I headed over to my second appointment for my blood work at the second location of the day. I warned the nurse of my phobia, armed myself with a giant cup of Orange Juice and positioned my hand around my dads fingers to squeeze them off. After she put the 7 vials in the cup holder next to me I decided it would probably be best if I left my eyes closed the remainder of the time. I didn't pass out, I cried just a little and I was able to walk out of there within 5 minutes. Go me! Maybe I'm getting better at this? Who knows. I hope so because I'm going to be going through this shit the rest of my life.
After lunch, my dad and I headed over to the third location of the day to meet with my Oncologist and sign my life away.
I think I made the "right" decision. Let's hope nothing negative comes of this but I have to say, I do have a good feeling about everything and I'm happy with the decision I made. My next appointment is in 3 days to get my first vaccination. I'm really hoping I don't get any weird side effects from it. They stated that really the only thing that has been happening to other patients is some swelling and redness by the injection site. But it is a vaccination so I could develop some flu-like symptoms as well. That would suck because I'm scheduled for my third week in a row vaccination the day before I leave for Miami. If I'm sick for that trip I'll be PISSED. My entire summer sucked - I NEED this vacation. I guess we shall see.
So - I'm stuck for 84 weeks in the Trial. Of course I could pull out anytime I want but what would be the point of that? I need to stick it out and I will. I'm just not really looking forward to it.
Thursday, August 11, 2011
My Decision.
Today I decided that I was going to do the Clinical Trial.
Am I happy about this decision? Not really...especially when I think about all the freakin needles I'm going to be getting. Do I think I made the right decision? Yes.
Have you ever just taken a step back from your life and really come to terms with the fact that you've never done anything that really meant something? I've always been searching for something that I could really be proud of myself for. Not that I'm not proud of all the accomplishments I've achieved thus far in my life - but it's different. They were all things that I did for me. That made my life better. I feel like by doing this, I'm sacrificing my comfort and my time and a good chunk of my life for a cause greater then myself. That really means something to me and maybe because I'm a firm believer that everything happens for a reason, I got this disease in order to help aid in the fight against it. Who knows.
What I do know is that while these next 84 weeks go by, I'm going to be thinking to myself, damn it Erin, why did you agree to do this! I mean, just the initial pre-Trial appointments alone are enough to drive a person to drink (which they told me I should take it easy on while receiving the vaccinations...grreeeaaattt). I go this coming Monday, August 15th, for my CT Scans, blood work and Consent Signing. But this is the fun part: My CT Scans are at 8:40am (meaning I'll have to be there no later then 7:40am) at one location. After I'm done getting pumped with radiation and my first set of needles and a giant, bad, dull-liquid-jello-tasting Contrast drink, I get to go to a second location to get my blood work. Here is where the anxiety will really set in when they put that thing that sounds and feels like a deflated balloon around my arm (I already want to puke), feel for a vein (I'm legit gagging as I type this)...and do the rest of whatever they do (I have to stop thinking about it because I don't have the money to buy myself another laptop when I barf on this one). By this point in the game I'm normally crying, holding my breath, on the verge of passing out and squeezing whoever's hand decided to come with me that day, practically to the point of breaking a few small bones. After I'm done with this wonderful juncture of my day, I get to move to a third location to (most likely) wait for at least 2 hours past the point of my scheduled time (since apparently being on time at Sloan is completely unheard of) to sign my Consent Form with my Oncologist. She physically has to see me do this in order for me to move forward with the Trial. I mean, could they make it a little more difficult?
Provided everything comes back normal with my CT's and blood work, I will begin my first round of vaccinations on Thursday, August 18th. I will need to go for three consecutive weeks in the beginning, so my following appointment would be on the 25th and then on September 1st. However, they will need to figure something else out for that third week because I will be boarding a flight to Miami with my ladies...which is MUCH needed and even more deserved. Following the next three weeks, my vaccinations, CT's, blood work and doctor appointments will be on a set schedule, jumping every few weeks.
If it's possible, I think I'm equally dreading the amount of time I'm going to have to devote to this as much as the amount of needles I will be receiving. Like, way to take over my life, Cancer. I just really hope this leads to something great that I can say I was a part of. According to one of the nurses of the doctor running the Trial, the 40 or so people who have been in the Trial for a year (or more) have had no signs of Cancer return (which, by the way, I was thrilled to hear that people have already been going through the process and I'm not one of the first experiments). I'm one of the lucky ones who had a less aggressive strain of Cancer this last time but there are people in this Study who have gotten the disease much more frequently then I have. It makes me a little hopeful since none of them have yet to have any recurrences.
Am I worried about the future of my health? Yes. Am I nervous I'll have reproductive challenges in the future? Yes. Do I feel like I'm going to wind up having to pay a ridiculous amount of money out of my (dust-filled) pocket for something that I don't want to do? Yes. Am I dreading going into the city 50 times for things I absolutely loathe doing? Yes. Do I fucking hate this disease with a passion? Yes. But I still feel like this is something I need to do and if I don't I will always think back to myself that I should have done it.
I just really hope this is the right decision.
Am I happy about this decision? Not really...especially when I think about all the freakin needles I'm going to be getting. Do I think I made the right decision? Yes.
Have you ever just taken a step back from your life and really come to terms with the fact that you've never done anything that really meant something? I've always been searching for something that I could really be proud of myself for. Not that I'm not proud of all the accomplishments I've achieved thus far in my life - but it's different. They were all things that I did for me. That made my life better. I feel like by doing this, I'm sacrificing my comfort and my time and a good chunk of my life for a cause greater then myself. That really means something to me and maybe because I'm a firm believer that everything happens for a reason, I got this disease in order to help aid in the fight against it. Who knows.
What I do know is that while these next 84 weeks go by, I'm going to be thinking to myself, damn it Erin, why did you agree to do this! I mean, just the initial pre-Trial appointments alone are enough to drive a person to drink (which they told me I should take it easy on while receiving the vaccinations...grreeeaaattt). I go this coming Monday, August 15th, for my CT Scans, blood work and Consent Signing. But this is the fun part: My CT Scans are at 8:40am (meaning I'll have to be there no later then 7:40am) at one location. After I'm done getting pumped with radiation and my first set of needles and a giant, bad, dull-liquid-jello-tasting Contrast drink, I get to go to a second location to get my blood work. Here is where the anxiety will really set in when they put that thing that sounds and feels like a deflated balloon around my arm (I already want to puke), feel for a vein (I'm legit gagging as I type this)...and do the rest of whatever they do (I have to stop thinking about it because I don't have the money to buy myself another laptop when I barf on this one). By this point in the game I'm normally crying, holding my breath, on the verge of passing out and squeezing whoever's hand decided to come with me that day, practically to the point of breaking a few small bones. After I'm done with this wonderful juncture of my day, I get to move to a third location to (most likely) wait for at least 2 hours past the point of my scheduled time (since apparently being on time at Sloan is completely unheard of) to sign my Consent Form with my Oncologist. She physically has to see me do this in order for me to move forward with the Trial. I mean, could they make it a little more difficult?
Provided everything comes back normal with my CT's and blood work, I will begin my first round of vaccinations on Thursday, August 18th. I will need to go for three consecutive weeks in the beginning, so my following appointment would be on the 25th and then on September 1st. However, they will need to figure something else out for that third week because I will be boarding a flight to Miami with my ladies...which is MUCH needed and even more deserved. Following the next three weeks, my vaccinations, CT's, blood work and doctor appointments will be on a set schedule, jumping every few weeks.
If it's possible, I think I'm equally dreading the amount of time I'm going to have to devote to this as much as the amount of needles I will be receiving. Like, way to take over my life, Cancer. I just really hope this leads to something great that I can say I was a part of. According to one of the nurses of the doctor running the Trial, the 40 or so people who have been in the Trial for a year (or more) have had no signs of Cancer return (which, by the way, I was thrilled to hear that people have already been going through the process and I'm not one of the first experiments). I'm one of the lucky ones who had a less aggressive strain of Cancer this last time but there are people in this Study who have gotten the disease much more frequently then I have. It makes me a little hopeful since none of them have yet to have any recurrences.
Am I worried about the future of my health? Yes. Am I nervous I'll have reproductive challenges in the future? Yes. Do I feel like I'm going to wind up having to pay a ridiculous amount of money out of my (dust-filled) pocket for something that I don't want to do? Yes. Am I dreading going into the city 50 times for things I absolutely loathe doing? Yes. Do I fucking hate this disease with a passion? Yes. But I still feel like this is something I need to do and if I don't I will always think back to myself that I should have done it.
I just really hope this is the right decision.
Sunday, August 7, 2011
The right decision.
Today I decided that it was time to try to return to the gym...even without a bra. Since I haven't been in over 2 months, I needed to start slow anyway. Donning only a sports bra and two tank tops, I spent an hour on the treadmill and did some abs work. Let me tell you - it felt so good to get back...even if it wasn't my normal hardcore workout. I'm glad I am slowly starting to return to my normal life even if it feels like it's taking forever.
Some new updates in Erin's world: sneezing is still a bit difficult; although it's getting better. I've been able to complete more then not. Being that my allergies are always fun in the Summer, sneezing and blowing my nose go hand in hand with the season. While blowing my nose last week, I discovered another bizarre thing with my body which is difficult for me to describe in writing. It's basically as if my incision tightens up and twitches (?) whenever I blow my nose. Don't ask me. This whole recovery process has been a learning experience if there ever was one. The body is a curious thing. I know I will never underestimate mine moving forward.
This past Thursday, August 4th, I had my appointment with my Oncologist. I decided that since the only time I really go into NY anymore is for crappy doctor appointments, maybe this time I would start my day with something less threatening. My father and I went to MOMA (The Museum of Modern Arts) for a few hours before my appointment and it was definitely a good way to start the day. I was in better spirits then normal when they finally took me into my appointment - which was only running about 40 minutes late. Miracle of Jesus? I think so. You can tell I'm slightly happier then I normally am while waiting.
Although I asked probably every question I could think of, I'm still undecided...though I'm leaning toward doing the Trial (still). Tomorrow I plan on calling the doctor running the Study at Sloan to ask some additional questions that I believe he will be able to answer a little more thoroughly. One thing that I did find sort of fated when I asked my Oncologist to explain the Trial, is that it is only for Sarcoma patients whose Cancer metastasized to their lung and are now Cancer free.
When I explained my current situation to family and friends, the consensus was mixed. However, I think the only reason I'm really leaning towards doing the Trial is not only because it's something that I can contribute to society that is bigger then myself, but also because it seems like it was meant to be. There are only 134 participants in the entire country that are taking part in the Trial. Of these participants, they all had to have Sarcoma come back in one or both of their lungs, have had it removed and are now Cancer free. Plus, they all had to have this happen during this particular time frame, being that that Trial is starting at the end of this month. Am I wrong to feel like in some weird, star-aligned, cosmic kind of way it was meant to be? I don't think I'm too off-based to say that.
Late Friday night I was in the bathroom and took a look at my scar. I am still completely numb under my left arm and still have some numbness down towards my ribs and around to my back. I ran the back of my hand over the incision. It feels weird. As it's been healing it's been getting a little more feeling around the area but it's still desensitized quite a bit. The scar itself is kind of bumpy and of course, not very appealing to look at. I guess it all just hit me at once because a wave of nausea came over me and as I looked at myself in the mirror, the blood began to drain from my face and my lips turned blue. I stumbled back to my room and called out for my sleeping father to please bring me some orange juice before I passed out on my floor. It took over 10 minutes for the episode to subside. I'm no stranger to having this happen but normally it's when there's a needle involved. Nonetheless, they are never fun. I've decided that maybe I shouldn't look at my back for a while.
After I speak with the other doctor tomorrow, I will update my decision. Hopefully it'll be the right one.
Some new updates in Erin's world: sneezing is still a bit difficult; although it's getting better. I've been able to complete more then not. Being that my allergies are always fun in the Summer, sneezing and blowing my nose go hand in hand with the season. While blowing my nose last week, I discovered another bizarre thing with my body which is difficult for me to describe in writing. It's basically as if my incision tightens up and twitches (?) whenever I blow my nose. Don't ask me. This whole recovery process has been a learning experience if there ever was one. The body is a curious thing. I know I will never underestimate mine moving forward.
This past Thursday, August 4th, I had my appointment with my Oncologist. I decided that since the only time I really go into NY anymore is for crappy doctor appointments, maybe this time I would start my day with something less threatening. My father and I went to MOMA (The Museum of Modern Arts) for a few hours before my appointment and it was definitely a good way to start the day. I was in better spirits then normal when they finally took me into my appointment - which was only running about 40 minutes late. Miracle of Jesus? I think so. You can tell I'm slightly happier then I normally am while waiting.
Although I asked probably every question I could think of, I'm still undecided...though I'm leaning toward doing the Trial (still). Tomorrow I plan on calling the doctor running the Study at Sloan to ask some additional questions that I believe he will be able to answer a little more thoroughly. One thing that I did find sort of fated when I asked my Oncologist to explain the Trial, is that it is only for Sarcoma patients whose Cancer metastasized to their lung and are now Cancer free.
When I explained my current situation to family and friends, the consensus was mixed. However, I think the only reason I'm really leaning towards doing the Trial is not only because it's something that I can contribute to society that is bigger then myself, but also because it seems like it was meant to be. There are only 134 participants in the entire country that are taking part in the Trial. Of these participants, they all had to have Sarcoma come back in one or both of their lungs, have had it removed and are now Cancer free. Plus, they all had to have this happen during this particular time frame, being that that Trial is starting at the end of this month. Am I wrong to feel like in some weird, star-aligned, cosmic kind of way it was meant to be? I don't think I'm too off-based to say that.
Late Friday night I was in the bathroom and took a look at my scar. I am still completely numb under my left arm and still have some numbness down towards my ribs and around to my back. I ran the back of my hand over the incision. It feels weird. As it's been healing it's been getting a little more feeling around the area but it's still desensitized quite a bit. The scar itself is kind of bumpy and of course, not very appealing to look at. I guess it all just hit me at once because a wave of nausea came over me and as I looked at myself in the mirror, the blood began to drain from my face and my lips turned blue. I stumbled back to my room and called out for my sleeping father to please bring me some orange juice before I passed out on my floor. It took over 10 minutes for the episode to subside. I'm no stranger to having this happen but normally it's when there's a needle involved. Nonetheless, they are never fun. I've decided that maybe I shouldn't look at my back for a while.
After I speak with the other doctor tomorrow, I will update my decision. Hopefully it'll be the right one.
Wednesday, August 3, 2011
I haven't even said yes yet...
Earlier this afternoon I called my Oncologist to make sure everything was fine for my appointment tomorrow at 3:45pm to discuss this Clinical Trial (since no one called me to confirm). The temp filling in for the normal Admin read that I was confirmed for my CT Scans at 11:40am and my consultation with my Oncologist at 3:45pm.
Umm...excuse me? I did not schedule any CT Scans. She stated that on July 22nd my schedule was changed to having both the original meeting and these CT Scans in the morning. I politely informed her that there was no reason for me to have the CT Scans prior to my meeting with the doctor since I had yet to decide if I was, in fact, going to participate in this Trial. I told her to please find out what was going on and to call me back so that I knew what was happening tomorrow.
Hours go by. Did I receive a call back? Of course not. I call again.
Conveniently she's basically already forgotten what I told her the first time around so I re-explain. She tells me as per my doctor's notes in the system, she spoke with my mother and confirmed that I would be receiving CT Scans before my meeting with her tomorrow. There is no way on God's Green Earth that my mother would confirm any sort of tests, appointments, pin-pricks, etc. for me without checking with me first. I tell this woman (who is now beginning to get on my nerves due to her less then courteous demeanor) that my mother would never have agreed to such a thing so there must have been some sort of mix up. She then proceeds in her smug way, to tell me that "this is why we like to have the patients speak directly with the doctors so that there isn't any miscommunication." Bitch, you can fuck yourself. My doctor is the one that decided to call my mother after I had left a message for her to call me back. I didn't ask for her to call my mother - she chose to call her.
Anyway, I attempted to explain further to this nasty woman that it made absolutely no sense for me to receive CT Scans before meeting with my doctor because what if I decided not to participate? It would just be added and unnecessary radiation and stress for me. Maybe it's just me but I'm not exactly sure what's so difficult to understand here.
The temp wound up calling me back to tell me that they cancelled my morning CT Scans and would try to schedule them for after my appointment with my Oncologist...but that they didn't know if this was possible to arrange for the same day. I might have to come back. I said, I don't care, it's fine. I mean, what if I ask all my questions and then decide that I really don't want to go through with this? I guess I can understand what they're trying to do - they're trying to speed up the process since the deadline is so close. They don't even know if I qualify for the Trial until I get the CT's. The only way I won't qualify, however, is if something shows on the CT's - like another tumor somewhere. Well insanity might quickly set in should something come back on it after all the shit I just went through recently. So - they better come back fine.
I haven't even agreed to participate in this thing yet and already they're making it difficult for me. Nothing can ever be easy. I'm not exactly sure why I had to argue with this woman in order for her to get the point: I'm not getting any tests done until I agree to go along with this Trial. Really - is that so hard to grasp? Apparently.
Anyway, I'm back to my one original appointment at 3:45pm tomorrow with my Oncologist. I might just get so frustrated with how this is being run that I just say no to the whole thing. Who knows. I guess I'll find out tomorrow.
Umm...excuse me? I did not schedule any CT Scans. She stated that on July 22nd my schedule was changed to having both the original meeting and these CT Scans in the morning. I politely informed her that there was no reason for me to have the CT Scans prior to my meeting with the doctor since I had yet to decide if I was, in fact, going to participate in this Trial. I told her to please find out what was going on and to call me back so that I knew what was happening tomorrow.
Hours go by. Did I receive a call back? Of course not. I call again.
Conveniently she's basically already forgotten what I told her the first time around so I re-explain. She tells me as per my doctor's notes in the system, she spoke with my mother and confirmed that I would be receiving CT Scans before my meeting with her tomorrow. There is no way on God's Green Earth that my mother would confirm any sort of tests, appointments, pin-pricks, etc. for me without checking with me first. I tell this woman (who is now beginning to get on my nerves due to her less then courteous demeanor) that my mother would never have agreed to such a thing so there must have been some sort of mix up. She then proceeds in her smug way, to tell me that "this is why we like to have the patients speak directly with the doctors so that there isn't any miscommunication." Bitch, you can fuck yourself. My doctor is the one that decided to call my mother after I had left a message for her to call me back. I didn't ask for her to call my mother - she chose to call her.
Anyway, I attempted to explain further to this nasty woman that it made absolutely no sense for me to receive CT Scans before meeting with my doctor because what if I decided not to participate? It would just be added and unnecessary radiation and stress for me. Maybe it's just me but I'm not exactly sure what's so difficult to understand here.
The temp wound up calling me back to tell me that they cancelled my morning CT Scans and would try to schedule them for after my appointment with my Oncologist...but that they didn't know if this was possible to arrange for the same day. I might have to come back. I said, I don't care, it's fine. I mean, what if I ask all my questions and then decide that I really don't want to go through with this? I guess I can understand what they're trying to do - they're trying to speed up the process since the deadline is so close. They don't even know if I qualify for the Trial until I get the CT's. The only way I won't qualify, however, is if something shows on the CT's - like another tumor somewhere. Well insanity might quickly set in should something come back on it after all the shit I just went through recently. So - they better come back fine.
I haven't even agreed to participate in this thing yet and already they're making it difficult for me. Nothing can ever be easy. I'm not exactly sure why I had to argue with this woman in order for her to get the point: I'm not getting any tests done until I agree to go along with this Trial. Really - is that so hard to grasp? Apparently.
Anyway, I'm back to my one original appointment at 3:45pm tomorrow with my Oncologist. I might just get so frustrated with how this is being run that I just say no to the whole thing. Who knows. I guess I'll find out tomorrow.
Sunday, July 31, 2011
Fireworks.
As I was sitting on my couch half watching another nameless movie last night I thought to myself - what do I miss most about the summer that I'm losing out on this year? The thing that I could come up with is: fireworks. They're probably my most favorite thing that summer offers and winter doesn't. Is that strange?
For some reason fireworks have always induced some sort of emotional feelings for me so to miss them doesn't seem out of the ordinary. Sure, I love the beach and BBQ's and all that jazz...but you can always take a vacation in the winter to get that. Fireworks are really only around during the summer months - the 4th of July and in some towns up until Labor Day. There's nothing better then sitting barefoot in the sand on a breezy summer night watching a million pyrotechnic stars combust in a variety of colors.
Maybe I'm starting to go a little stir crazy being trapped in the confines of my house with little hope of escape. Maybe I'm just sad that tomorrow is already August 1st and the summer is racing by while I stare out the window at it. Maybe it's because as the years go on I find myself losing time like the snap of a finger and this is just another summer down the drain. Maybe I've just had one too many Rolling Rock's tonight that I'm talking a little crazy. Who knows at this point!
For two weeks I've been thinking my appointment with my Oncologist is this Wednesday - it's on Thursday. Good thing all the days just seem to mesh into each other and my social calendar isn't exactly overflowing lately. I can say this - I'm actually looking forward to going into the city for my Sloan appointment for once. It's an extremely rare occasion I actually go to that place without being in total misery. The simple mental ease I get from knowing that I only have an appointment to discuss a particular issue that won't necessarily affect my health relaxes me a little. I'm still up in the air about which direction I will choose to take with this Clinical Trial but at least I know that it will be my choice and I will finally, for once, be in control of something that happens with this disease.
My incision has been extremely sensitive lately and I'm not sure why. Is it because my skin is pulling while healing? One would think that it would have been more sensitive 2 weeks ago instead of now. My super hyper dog Lily ran across my back for the second time two morning's ago - I could have killed her. I guess little things like that which continue to agitate the area (like wearing a bra or a tight tank top or bathing suit...or practically anything pressing up against the spot if we want to be technical) will in turn continue to make it sore. But seriously - what can I do? I had the disability people from work calling me three days ago asking why I couldn't return to work and I actually had to tell the woman it was because I didn't exactly want to return to work bra-less. There are quite a few things I can handle in the work environment but that, my friends, is not one of them.
Onto another pressing issue...I've basically been reduced to ransacking my couch cushions for spare change since I have yet to receive my first Disability check. I'm not quite sure how Disability helps people when the first check you receive doesn't get to you until you're already back at work. Even though I'm not filling my tank on a weekly basis and painting the town red every weekend, I still have bills to pay. Life goes on and doesn't care that you had surgery and haven't been at work in 5 weeks. Not only do I have bills, bills, bills - but I have a (much needed) vacation with my ladies the first weekend of September that I'd like to have a little spending money for. The day my first check (which I've been informed is not really a check but rather a debit card...uhh...) comes in the mail will be the day I feel like a 5 year old on Christmas morning again. Dear Santa, thank you for this tiny plastic disc in which I can withdraw money from and be responsible so I can pay my bills on time instead of spending the money on a new pair of shoes that I would much rather get instead. The life of an adult.
I really hope I can catch one show of mesmerizing fireworks before the summer is over. That would make me happy. Back to my ice cold Rolling Rocks.
For some reason fireworks have always induced some sort of emotional feelings for me so to miss them doesn't seem out of the ordinary. Sure, I love the beach and BBQ's and all that jazz...but you can always take a vacation in the winter to get that. Fireworks are really only around during the summer months - the 4th of July and in some towns up until Labor Day. There's nothing better then sitting barefoot in the sand on a breezy summer night watching a million pyrotechnic stars combust in a variety of colors.
Maybe I'm starting to go a little stir crazy being trapped in the confines of my house with little hope of escape. Maybe I'm just sad that tomorrow is already August 1st and the summer is racing by while I stare out the window at it. Maybe it's because as the years go on I find myself losing time like the snap of a finger and this is just another summer down the drain. Maybe I've just had one too many Rolling Rock's tonight that I'm talking a little crazy. Who knows at this point!
For two weeks I've been thinking my appointment with my Oncologist is this Wednesday - it's on Thursday. Good thing all the days just seem to mesh into each other and my social calendar isn't exactly overflowing lately. I can say this - I'm actually looking forward to going into the city for my Sloan appointment for once. It's an extremely rare occasion I actually go to that place without being in total misery. The simple mental ease I get from knowing that I only have an appointment to discuss a particular issue that won't necessarily affect my health relaxes me a little. I'm still up in the air about which direction I will choose to take with this Clinical Trial but at least I know that it will be my choice and I will finally, for once, be in control of something that happens with this disease.
My incision has been extremely sensitive lately and I'm not sure why. Is it because my skin is pulling while healing? One would think that it would have been more sensitive 2 weeks ago instead of now. My super hyper dog Lily ran across my back for the second time two morning's ago - I could have killed her. I guess little things like that which continue to agitate the area (like wearing a bra or a tight tank top or bathing suit...or practically anything pressing up against the spot if we want to be technical) will in turn continue to make it sore. But seriously - what can I do? I had the disability people from work calling me three days ago asking why I couldn't return to work and I actually had to tell the woman it was because I didn't exactly want to return to work bra-less. There are quite a few things I can handle in the work environment but that, my friends, is not one of them.
Onto another pressing issue...I've basically been reduced to ransacking my couch cushions for spare change since I have yet to receive my first Disability check. I'm not quite sure how Disability helps people when the first check you receive doesn't get to you until you're already back at work. Even though I'm not filling my tank on a weekly basis and painting the town red every weekend, I still have bills to pay. Life goes on and doesn't care that you had surgery and haven't been at work in 5 weeks. Not only do I have bills, bills, bills - but I have a (much needed) vacation with my ladies the first weekend of September that I'd like to have a little spending money for. The day my first check (which I've been informed is not really a check but rather a debit card...uhh...) comes in the mail will be the day I feel like a 5 year old on Christmas morning again. Dear Santa, thank you for this tiny plastic disc in which I can withdraw money from and be responsible so I can pay my bills on time instead of spending the money on a new pair of shoes that I would much rather get instead. The life of an adult.
I really hope I can catch one show of mesmerizing fireworks before the summer is over. That would make me happy. Back to my ice cold Rolling Rocks.
Thursday, July 28, 2011
I just want to sneeze like a normal person...
It's been 4 weeks and 2 days since surgery and a few new things have occurred. First, it has become surprisingly difficult for me to complete a sneeze. I'm not sure if my allergies are acting up the last few days but I've been sneezing (or trying to) quite a bit. It seems as though the sneeze just kind of lingers in there and I wind up having a few false starts before actually getting one out, if I'm able to at all. Very strange. When I actually do follow through with a complete sneeze, it's a little painful! I feel as though this cannot possibly be the first time I'm sneezing since the surgery but then again, it's not exactly like I keep a Sneeze Journal and document every time I do so. It's very hard to remember your last sneeze unless it came along with 5 others or hurt when you actually did do it. Both of these things have been happening to me the last few days. I've been sneezing 3, 4 even 5 times in a row but I'm only able to complete a few of them - and again, once I do, I'm left with a painful pulling feeling. It's all very new and not something I'm very pleased with...as my allergies do get pretty bad from time to time.
I'm wondering if I'm not able go through with a sneeze because my lungs can't take in giant deep breaths yet. But then again, two days ago I (FINALLY) attended karaoke at a local watering hole that I used to frequent every Tuesday night before surgery and I was singing up a storm...as if no time had passed. It felt so good to get back to doing what I love. I never realized how much I love it and how much I need it in my life. There were a few times I found myself a little winded in the middle of some songs but I was able to catch my breath and sound just like I did before the surgery. For that, I am SO thankful. Here's a video from Tuesday night of me with my extremely talented and good friend, Theresa:
However, it is true when I'm home and yawn or take a deep breath it is still somewhat painful. I feel it more up in my shoulder as well as my lung. Is that weird? I think so. Come to think of it, though, when I had the tube in, in the hospital, it was pushing up against my shoulder so bad that I was practically crying every minute from the amount of pressure. I'm wondering if it has anything to do with this. Who knows. I'm sure even a month from now I'm still going to be feeling some new unusual things here and there. My body is probably mending and putting itself back together from what my doctor had to do to remove the tumor.
On a positive note - Tuesday night was the first time in 4 weeks that I was able to don a brazier. It felt good to have the girls contained again but let me tell you - the next morning was not fun. I woke up feeling extra sore all along my ribs, around to my back and of course at the incision spot. The soreness under my boob and around on my left side has yet to even start to feel better so I'm wondering when this will go away. I cannot imagine anyone that has to deal with broken ribs. If mine where only bent and pulled apart and I'm still in the same amount of pain over 4 weeks later, I cannot even fathom someone having to deal with broken ones. When would they heal?! I'm more concerned about my two crazy dogs (they're little mini pinschers) jumping on my ribs then on my incision. Even touching them now with little to no pressure, they're super tender. It's pretty nuts. Therefore, the continuation of being bra-less lives on for a longer time. Until then, it's double and triple layered clothing with super spandexy tank tops underneath. Fun times. The joys of being well endowed. BUT - I can say that I was able to rock one of my new bathing suit tops in my backyard yesterday for an hour or so while attempting to get some color on this pale body of mine. I had to pull the back of it down so that it was under my incision (which was not the most comfortable thing in the world) but at least I know I can lay out with a normal suit rather then a tank top and bikini bottom.
The humor in all this is that all my color will be in the front since I cannot expose the incision to the sun yet. Therefore, I'm not sure why I'm even laying out because I'll legit look like a Black and White Cookie once I'm slightly bronzed. That will be attractive. Watch out, boys!
I've decided to keep my appointment with my Oncologist at Sloan for Aug. 4th to discuss this Trial. I've asked countless people what they would do if they were in my shoes and the outcome was totally split, as I suspected it would be. Speaking honestly, I don't want to do this, simply because of the added stress and possible side effects down the road. But I know myself and I feel like if I don't do it I'll always think about what would have happened if I did. My mind isn't completely made up yet as I have a shitload of questions for my Oncologist as well as the doctor running the Study at Sloan, but I'm leaning towards doing it.
Annndddd...another kind of/kind of not sneezing attack. Three sneezes with only one follow through. Whhhyyyy!?! Just another thing to look forward to during this wonderful recovery process.
I'm wondering if I'm not able go through with a sneeze because my lungs can't take in giant deep breaths yet. But then again, two days ago I (FINALLY) attended karaoke at a local watering hole that I used to frequent every Tuesday night before surgery and I was singing up a storm...as if no time had passed. It felt so good to get back to doing what I love. I never realized how much I love it and how much I need it in my life. There were a few times I found myself a little winded in the middle of some songs but I was able to catch my breath and sound just like I did before the surgery. For that, I am SO thankful. Here's a video from Tuesday night of me with my extremely talented and good friend, Theresa:
However, it is true when I'm home and yawn or take a deep breath it is still somewhat painful. I feel it more up in my shoulder as well as my lung. Is that weird? I think so. Come to think of it, though, when I had the tube in, in the hospital, it was pushing up against my shoulder so bad that I was practically crying every minute from the amount of pressure. I'm wondering if it has anything to do with this. Who knows. I'm sure even a month from now I'm still going to be feeling some new unusual things here and there. My body is probably mending and putting itself back together from what my doctor had to do to remove the tumor.
On a positive note - Tuesday night was the first time in 4 weeks that I was able to don a brazier. It felt good to have the girls contained again but let me tell you - the next morning was not fun. I woke up feeling extra sore all along my ribs, around to my back and of course at the incision spot. The soreness under my boob and around on my left side has yet to even start to feel better so I'm wondering when this will go away. I cannot imagine anyone that has to deal with broken ribs. If mine where only bent and pulled apart and I'm still in the same amount of pain over 4 weeks later, I cannot even fathom someone having to deal with broken ones. When would they heal?! I'm more concerned about my two crazy dogs (they're little mini pinschers) jumping on my ribs then on my incision. Even touching them now with little to no pressure, they're super tender. It's pretty nuts. Therefore, the continuation of being bra-less lives on for a longer time. Until then, it's double and triple layered clothing with super spandexy tank tops underneath. Fun times. The joys of being well endowed. BUT - I can say that I was able to rock one of my new bathing suit tops in my backyard yesterday for an hour or so while attempting to get some color on this pale body of mine. I had to pull the back of it down so that it was under my incision (which was not the most comfortable thing in the world) but at least I know I can lay out with a normal suit rather then a tank top and bikini bottom.
The humor in all this is that all my color will be in the front since I cannot expose the incision to the sun yet. Therefore, I'm not sure why I'm even laying out because I'll legit look like a Black and White Cookie once I'm slightly bronzed. That will be attractive. Watch out, boys!
I've decided to keep my appointment with my Oncologist at Sloan for Aug. 4th to discuss this Trial. I've asked countless people what they would do if they were in my shoes and the outcome was totally split, as I suspected it would be. Speaking honestly, I don't want to do this, simply because of the added stress and possible side effects down the road. But I know myself and I feel like if I don't do it I'll always think about what would have happened if I did. My mind isn't completely made up yet as I have a shitload of questions for my Oncologist as well as the doctor running the Study at Sloan, but I'm leaning towards doing it.
Annndddd...another kind of/kind of not sneezing attack. Three sneezes with only one follow through. Whhhyyyy!?! Just another thing to look forward to during this wonderful recovery process.
Monday, July 25, 2011
What to do, what to do...
Lately - I've been an emotional wreck. This whole should I or shouldn't I Clinical Trial thing is driving me insane. If it wasn't a Clinical Trial filled with my nemesis (The Needle), I might be more easily swayed to participating in it. However, those who know me have seen the blood drain from my face as if someone poked a hole in a glass of water and watched the liquid level lower little by little. I get horrible anxiety, cry (I know it sounds childish...) and sometimes pass out. The anxiety that walks hand and hand with The Needle is unbearable.
On top of all the vaccinations and blood work I'll need done for the next 3 YEARS while I'm in the Study, I'll probably be getting more CT Scans then I would normally receive should I decide not to take part in the Trial. Which means more radiation. Which means unnecessary radiation. Just what someone whose had Cancer wants pumped into their body...something that is prone to causing it. It's bad enough I'll be going back to getting them every 3-4 months for however long either one of my doctor's decides I need to go (my lung Dr. stated that I would only need to go for a year of every 4 months but I doubt my regular Dr. will agree to that - ugh)...but if I need additional tests on top of all that?
So - I have The Needle, extra CT Scans, possible serious side effects that I'll never know about until I get them down the road (IF I get them down the road...) on top of some serious, serious time. This isn't a few visits we're talking about. This is 84 weeks of being intensely in the Study, plus another (approximate) 2 years of observation after that. I am not a rich woman. It's $28.00 every time I go into the city on the train. If I drive - it's not me that drives. My dad does. I'm too afraid to ruin my new car (selfish, I know) so he's gracious enough to drive his car in when we go. That means he'll have to take the time and gas money to go. Plus, what will happen with my job? They are wonderful people and of course they were very understanding about me taking the time to be out for my surgery and the recovery afterwards but I can't tell them I need to take 50 additional days off to partake in a Clinical Trial.
It's just all so confusing. I'm damned if I do and damned if I don't. Tomorrow I guess I will need to make my decision. The truth of the matter is...I really do want to do it. It's scary and I'm nervous about the side effects in the future - but I do want to do it. If it was a pill or something like that, I would have already agreed and signed the Consent Form. People might think I'm being a little ridiculous when I say the main reason for not doing it is because of all the needles but if you had a phobia, you would understand. It's like asking someone whose deathly afraid of heights to stand at the top of the Empire State Building on a ledge with no safety rail and look down. I hate needles. Just thinking about them now - I'm already starting to get anxiety and my eyes are tearing up. The thing is - I hate that I hate them! I've tried to "get over it" and truthfully I do feel like I've gotten a little better since being diagnosed almost 3 years ago but it's still pretty bad. Knowing that this Trial only consists of getting stabbed with needles endlessly...it's just torture for me. It is true torture.
But honestly - I don't want to do this Trial for me. Who knows if it could really do anything in a positive way for me...but I want to do it for others who might find themselves in this shitty position. I would never wish something like this on anyone. Finding out you have Cancer is truly devastating. If I could be one of a few that could possibly aid in paving the way to finding a cure - how amazing would that feel? I have always been (as I'm sure many others are as well) looking for a way to feel "fulfilled". To do something that really makes you look at your life as if you did something great - something that truly helps others. This could be it.
I wish I knew the right answer.
On a side note - I went out with my mom for manicures and pedicures today for her birthday. Still unable to don a bra, multiple tank tops were worn for the occasion. The thing I love most about splurging for a pedicure is the fabulous massage chair you're stationed in. A lover of massages, I wish I could purchase one for my room. Since my incision is on my back - but healing - I was hesitant to turn on the chair but upon seeing the bliss my mother was in, I couldn't help myself. I tried not to lean back when the fake kneading hands were on the incision area but even so, I am still incredibly sore tonight. Nice going, me. I start to feel better and think I can handle these things, but clearly I cannot. Below is the healing process thus far:
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