I can honestly say that even my left lung surgery wasn't this tedious nor was it so annoying. With no exaggeration, every single time I find myself having to use the toilet, I also have to step into the tub and hose myself off like some sort of farm animal.
News flash: I pee. A LOT.
And it's not only the frequent shower visits. It's the constant changing of the gauze (I envision tiny red uniforms and black fuzzy hats on my gauze squares when I say this phrase...although this is not the royal treatment I was looking for...). I guess this wouldn't be SO super bad if it didn't just remind me of my defective vagina 100 times a day. Every time I have to hold a mirror down there in order to see how the placement of gauze is lined up, the emphasis on my non-working lady part is refreshed and I'm brought back down to this gloomy place.
I will say, however, that the last week has brought a lot of healing to the area and the once vast void that was the unwanted hole in my private area has closed a great deal. It is still very uncomfortable to sit and I am still tormented with the idea that cosmetically I'm going to look different coming out of this, but I am starting to see the light at the end of THIS tunnel, at the very least.
The next chapter of my struggle will be my trip down Radiation Road. I'm definitely not looking forward to it. It's not even the fatigue or metal mouth or whatever else accompanies this type of treatment. It's the emotional battle of the even more severe sexual side effects - as if I don't have enough.
For a soon-to-be 29 year old woman with a boyfriend she finds extremely attractive, it's hard to feel as though I've already lost my sexual spark. It's fucking scary to read up on this type of radiation and realize that your vag can legit change it's form. You're basically sent home with this dildo-type thing to stretch yourself out since you basically tighten up to the point where you'll be in pain if you don't. Not to mention the added dryness and irritation. Great. However, The American Cancer Society's site has an interesting take on it: One way to do this is to have vaginal intercourse at least 3 to 4 times a week. Clearly, this was music to my boyfriend's ears (and mine).
I still don't know when my treatment will begin and obviously I won't know about any side effects until I'm going through it. I'm keeping my fingers crossed that they will be minimal and hopefully after 5 and 1/2 weeks of it I'll be able to claim Cancer Free status for real-zies (unlike last time).
Wednesday, November 6, 2013
Thursday, October 24, 2013
The Abyss...
The last 24 hours have been way too intense for me. The "Abyss" I'm referring to isn't some realm of outer space nor is it that movie from the 80's...it's my fucking VAG.
- I would suggest reading the following at your own risk. I will not take responsibility for any vomiting or bouts of nausea. -
Late last week I sneezed and felt a sharp pain/pop "down there". I didn't really think to check myself until the following day when I nearly dropped my stupid little compact mirror that I was holding between my legs - I had two HOLES at either end of my incision. I'm talking legit HOLES. My stitches had busted open.
After regaining my mobile functions and no longer hovering over the toilet dry heaving, I frantically called my mother and had her rush over to judge for herself if I looked as horrific as I thought I did. Obviously, something wasn't right and we called the doctor. Of course, we couldn't move up my appointment as much as we wanted to so I had to wait out the weekend/early following week until yesterday, 10/23/13.
I was dreading this appointment. I knew I couldn't stay like that - especially since the holes were barely hanging together by a tiny ass thread of skin. GROSS. I figured my doctor was going to stitch me back together right then and there and I was sooo not looking forward to that. But alas. Silly me actually thought that that would be the worst option. HA! Boy was I fucking wrong.
Rather then be stitched back together, I was instead cut the fuck open. Now, rather then having two smaller holes, I have one giant ass fucking GAPING abyss of a hole where my tumor was. I can't even begin to explain how horribly frightening that/this whole experience was/is.
Of course, now that my hormones are constantly on the warpath, I was already on the verge of a meltdown. Once I was told that a numbing needle was going to be jabbed into the incision area, the rest of the skin was going to be CUT away and the inside of the hole SCRAPED OUT...I was a complete disaster. I mean, is this real life??? Or rather, is this really MY life...?????
Once all the stabbing and snipping and scraping was done, the hole was flushed out with water or saline or whatever the fuck it was, and then a giant wad of gauze was shoved into the hole. Umm...
THEN I was told that every single time I peed, I would need to take out the gauze, flush out the hole with warm water and then fill the hole with new gauze. EVERY SINGLE TIME I PEED.
If I was to describe the size of my bladder I would probably compare it to half of an unshelled peanut. I pee 73 times a day. This was going to be a nightmare.
Aside from not ever wanting to see what this thing looked like, I had the added bonus of being told it would take at least another month to heal. On top of that, I was informed last week that my doctors decided that localized Radiation would be my next course of treatment. In pure Cancer fuckbag fashion, you never know anything until you meet with these doctor's. So basically, I won't know a damn thing about the Radiation until I meet with my now 5th Sloan doctor on 10/29. What I do know is that I won't be able to start Radiation until this thing heals. What I also know is that it will probably complicate my issues down there (sexually, physically, etc.) even more then what I already have to deal with. I can't even take it. That's a whole separate discussion that I definitely won't go into now.
Anyway, after I arrived home after a car ride full of crying and emotional breaking down, I obviously had to pee. This is probably the worse thing I've ever had to do following my battles with this disease...and I've had to do and see enough for a lifetime as it is already.
Having to stick gauze up into a serious open hole in your freakin' VAGINA that's not supposed to be there would make the faint of heart drop dead. And not only do I get the pleasure of having to do this at all, but I have to do it 100 times a fucking day!!! PLUS I have to continue doing this until it heals!
If I didn't throw my hands up in pure disbelief that this is actually the life I have to live I'd probably be strangling myself with them! It just gets "better" and "better".
A full 24 hours have gone by since the whole ordeal went down and every single time I have to change out the gauze I feel sick. It is not a comforting sight to see. Basically, the wound has to heal from the inside, out. How freakin' weird is that? The saline'd gauze apparently helps it heal correctly and reduces the risk of it looking deformed. Clearly, I'm still going to wind up with some sort of concaved area down there. There's no way in hell a hole this size is just going to magically close without any type of defect. The whole thing is just a complete nightmare.
Even if I could live with the hole, and the flushing it out after every urination, and the changing of the gauze, and the deformed vag I'm going to wind up with, and the fact that I now need some dildo-esque Radiation thingamagig therapy...what I do not want to live with is the overwhelming sense of being stuck. Now I'm stuck here, barely being able to move and walk around the house, let alone venture out into the wilderness for who knows how freaking long...on top of not being able to roll around in the sheets for an undetermined amount of time. Translating into what will seem like a goddamn eternity.
Aside from AAALLLLLLL of that, my boyfriend and I have been building a house in West Virginia and I'm missing all of it. This whole thing couldn't have come at a worse time. He has to be there to work on the house so I will hardly get to see him and I won't be able to see my first house being built and obviously won't be able to help build it. The whole thing just sucks SO bad.
Even after 5 years (almost to the day of my first vag surgery at Sloan 5 years ago - 10/14/08 and now 10/8/13...ha...) I cannot get used to or even ever seem to wrap my head around the fact that this is my life. It's just ridiculous! I'm either going to wind up barreling down the road of insanity or something is going to have to give. I guess for now the only thing that's going to give is myself, giving myself new wads of gauze every half hour...for the next month...grreeeaaaattt...
- I would suggest reading the following at your own risk. I will not take responsibility for any vomiting or bouts of nausea. -
Late last week I sneezed and felt a sharp pain/pop "down there". I didn't really think to check myself until the following day when I nearly dropped my stupid little compact mirror that I was holding between my legs - I had two HOLES at either end of my incision. I'm talking legit HOLES. My stitches had busted open.
After regaining my mobile functions and no longer hovering over the toilet dry heaving, I frantically called my mother and had her rush over to judge for herself if I looked as horrific as I thought I did. Obviously, something wasn't right and we called the doctor. Of course, we couldn't move up my appointment as much as we wanted to so I had to wait out the weekend/early following week until yesterday, 10/23/13.
I was dreading this appointment. I knew I couldn't stay like that - especially since the holes were barely hanging together by a tiny ass thread of skin. GROSS. I figured my doctor was going to stitch me back together right then and there and I was sooo not looking forward to that. But alas. Silly me actually thought that that would be the worst option. HA! Boy was I fucking wrong.
Rather then be stitched back together, I was instead cut the fuck open. Now, rather then having two smaller holes, I have one giant ass fucking GAPING abyss of a hole where my tumor was. I can't even begin to explain how horribly frightening that/this whole experience was/is.
Of course, now that my hormones are constantly on the warpath, I was already on the verge of a meltdown. Once I was told that a numbing needle was going to be jabbed into the incision area, the rest of the skin was going to be CUT away and the inside of the hole SCRAPED OUT...I was a complete disaster. I mean, is this real life??? Or rather, is this really MY life...?????
Once all the stabbing and snipping and scraping was done, the hole was flushed out with water or saline or whatever the fuck it was, and then a giant wad of gauze was shoved into the hole. Umm...
THEN I was told that every single time I peed, I would need to take out the gauze, flush out the hole with warm water and then fill the hole with new gauze. EVERY SINGLE TIME I PEED.
If I was to describe the size of my bladder I would probably compare it to half of an unshelled peanut. I pee 73 times a day. This was going to be a nightmare.
Aside from not ever wanting to see what this thing looked like, I had the added bonus of being told it would take at least another month to heal. On top of that, I was informed last week that my doctors decided that localized Radiation would be my next course of treatment. In pure Cancer fuckbag fashion, you never know anything until you meet with these doctor's. So basically, I won't know a damn thing about the Radiation until I meet with my now 5th Sloan doctor on 10/29. What I do know is that I won't be able to start Radiation until this thing heals. What I also know is that it will probably complicate my issues down there (sexually, physically, etc.) even more then what I already have to deal with. I can't even take it. That's a whole separate discussion that I definitely won't go into now.
Anyway, after I arrived home after a car ride full of crying and emotional breaking down, I obviously had to pee. This is probably the worse thing I've ever had to do following my battles with this disease...and I've had to do and see enough for a lifetime as it is already.
Having to stick gauze up into a serious open hole in your freakin' VAGINA that's not supposed to be there would make the faint of heart drop dead. And not only do I get the pleasure of having to do this at all, but I have to do it 100 times a fucking day!!! PLUS I have to continue doing this until it heals!
If I didn't throw my hands up in pure disbelief that this is actually the life I have to live I'd probably be strangling myself with them! It just gets "better" and "better".
A full 24 hours have gone by since the whole ordeal went down and every single time I have to change out the gauze I feel sick. It is not a comforting sight to see. Basically, the wound has to heal from the inside, out. How freakin' weird is that? The saline'd gauze apparently helps it heal correctly and reduces the risk of it looking deformed. Clearly, I'm still going to wind up with some sort of concaved area down there. There's no way in hell a hole this size is just going to magically close without any type of defect. The whole thing is just a complete nightmare.
Even if I could live with the hole, and the flushing it out after every urination, and the changing of the gauze, and the deformed vag I'm going to wind up with, and the fact that I now need some dildo-esque Radiation thingamagig therapy...what I do not want to live with is the overwhelming sense of being stuck. Now I'm stuck here, barely being able to move and walk around the house, let alone venture out into the wilderness for who knows how freaking long...on top of not being able to roll around in the sheets for an undetermined amount of time. Translating into what will seem like a goddamn eternity.
Aside from AAALLLLLLL of that, my boyfriend and I have been building a house in West Virginia and I'm missing all of it. This whole thing couldn't have come at a worse time. He has to be there to work on the house so I will hardly get to see him and I won't be able to see my first house being built and obviously won't be able to help build it. The whole thing just sucks SO bad.
Even after 5 years (almost to the day of my first vag surgery at Sloan 5 years ago - 10/14/08 and now 10/8/13...ha...) I cannot get used to or even ever seem to wrap my head around the fact that this is my life. It's just ridiculous! I'm either going to wind up barreling down the road of insanity or something is going to have to give. I guess for now the only thing that's going to give is myself, giving myself new wads of gauze every half hour...for the next month...grreeeaaaattt...
Tuesday, October 15, 2013
It Was Nice to be Cancer Free...
...in my mind, at least.
Today marks one week since my latest surgery on October 8th. Lucky me, on September 17th, 2013 I found another hard mass while I was checking myself in the shower. It was back in my freakin vag. UNFUCKINGREAL.
So, I went through the I-wanna-stab-myself-in-the-face-with-a-fork process of tests and doctor appointments and probing and prodding and all that jazz. My tests were September 24th. When we didn't hear from my oncologist, we figured the news wasn't great but my mom called her on 9/25 anyway just to check, we received amazing news. She stated that I showed no sign of disease anywhere...including my lungs. There was just a note as to where scar tissue appeared due to prior surgery.
This. Was. A. Mazing.
My mom called me crying and said there was nothing on my scans. It was a great feeling. But I still had an appointment with my original Sloan doctor on 9/26 just to check what the mass was. Obviously, he felt something and informed that this would be an easy surgery, that it was only about the size of a pea and could be removed in 10 minutes or so. We asked why there was something there when my scans came back clear. He stated that since the vag has a lot of folds and whatnot, that it's hard to tell if anything is there. Great. I was then scheduled for my third (to date) vaginal surgery on Tues, 10/8.
Surgery came and went and luckily I was scheduled to be at the hospital at 8:15am, so at least it wasn't a super late procedure and I was able to leave that evening. Since then, I have been going through my usual recovery process. Since this tumor was more on the outside rather then the inside, the week since surgery has been slightly different then my first two vag surgeries. For instance, I can see the area that was operated on this time...and let me tell you, it kind of freaked me out for a solid 5 days or so because the swelling was so crazy.
My next appointment was scheduled for 10/30 with my vag surgeon and 10/31 with my oncologist to discuss possibly trying localized radiation. I was expecting my pathology report to come back positive as LMS but to have clean margins. This would mean that I was technically, Cancer Free.
It was hard for me to accept that I was Cancer Free because I'm always waiting for the other shoe to drop and something happen. But at the same time, I definitely felt some sort of relief just knowing that there weren't any masses in my body. It was a good feeling.
Today, my parents informed me that my pathology reports came back, and my margins tested positive for Cancer cells.
I still have Cancer.
Being that I have never had this happen in the 5+ years since I was diagnosed, it is a scary thing. My doctor removed the area he could in order to not deform me. If I had to have another surgery, I would absolutely be deformed and disfigured - and that could legit mean a million things. Great.
They won't have an answer as to what they plan on doing this time until Thursday when they have their weekly meeting with all the doctors. I won't know anything for another two or more days. That's always fun - waiting. My doctor stated that he wasn't leaning towards another surgery so who knows what it's going to be. Radiation, chemo, who knows anymore.
Naturally, I feel like when it comes to my health, I am always waiting for something to happen...because now it just seems like something always does happen. It blows. Trying to be positive when all that seems to keep happening are crappy things is super difficult. I guess all I can do is take it one day at a time and just try to live in the moment. It's not easy.
Today marks one week since my latest surgery on October 8th. Lucky me, on September 17th, 2013 I found another hard mass while I was checking myself in the shower. It was back in my freakin vag. UNFUCKINGREAL.
So, I went through the I-wanna-stab-myself-in-the-face-with-a-fork process of tests and doctor appointments and probing and prodding and all that jazz. My tests were September 24th. When we didn't hear from my oncologist, we figured the news wasn't great but my mom called her on 9/25 anyway just to check, we received amazing news. She stated that I showed no sign of disease anywhere...including my lungs. There was just a note as to where scar tissue appeared due to prior surgery.
This. Was. A. Mazing.
My mom called me crying and said there was nothing on my scans. It was a great feeling. But I still had an appointment with my original Sloan doctor on 9/26 just to check what the mass was. Obviously, he felt something and informed that this would be an easy surgery, that it was only about the size of a pea and could be removed in 10 minutes or so. We asked why there was something there when my scans came back clear. He stated that since the vag has a lot of folds and whatnot, that it's hard to tell if anything is there. Great. I was then scheduled for my third (to date) vaginal surgery on Tues, 10/8.
Surgery came and went and luckily I was scheduled to be at the hospital at 8:15am, so at least it wasn't a super late procedure and I was able to leave that evening. Since then, I have been going through my usual recovery process. Since this tumor was more on the outside rather then the inside, the week since surgery has been slightly different then my first two vag surgeries. For instance, I can see the area that was operated on this time...and let me tell you, it kind of freaked me out for a solid 5 days or so because the swelling was so crazy.
My next appointment was scheduled for 10/30 with my vag surgeon and 10/31 with my oncologist to discuss possibly trying localized radiation. I was expecting my pathology report to come back positive as LMS but to have clean margins. This would mean that I was technically, Cancer Free.
It was hard for me to accept that I was Cancer Free because I'm always waiting for the other shoe to drop and something happen. But at the same time, I definitely felt some sort of relief just knowing that there weren't any masses in my body. It was a good feeling.
Today, my parents informed me that my pathology reports came back, and my margins tested positive for Cancer cells.
I still have Cancer.
Being that I have never had this happen in the 5+ years since I was diagnosed, it is a scary thing. My doctor removed the area he could in order to not deform me. If I had to have another surgery, I would absolutely be deformed and disfigured - and that could legit mean a million things. Great.
They won't have an answer as to what they plan on doing this time until Thursday when they have their weekly meeting with all the doctors. I won't know anything for another two or more days. That's always fun - waiting. My doctor stated that he wasn't leaning towards another surgery so who knows what it's going to be. Radiation, chemo, who knows anymore.
Naturally, I feel like when it comes to my health, I am always waiting for something to happen...because now it just seems like something always does happen. It blows. Trying to be positive when all that seems to keep happening are crappy things is super difficult. I guess all I can do is take it one day at a time and just try to live in the moment. It's not easy.
Monday, September 9, 2013
5 Years and 1 Day.
Yesterday, September 8th, 2013 marked my 5 Year "Anniversary"- if you will - with Cancer. The same set of emotions accompany me on this day every year. The first is, of course, Sadness. Sad that my life is a never ending cycle of tests and let-downs and struggles and my own personal Hell. This is followed by Relief. Relief that I'm still alive and healthy, to some sort of extent. Next comes the blanket of Anxiety that seems to frequent me way too often these days. The Anxious feelings weave their way in and out of all the other emotions that run their course throughout the day. Then comes the wave of Strength/Accomplishment. I try to hold onto this pair as best and long as I can, although this year it seemed almost impossible. I know I am proud of everything I've been able to overcome and withstand up until this point but Strength seems to be somewhat elusive nowadays. Finally, there's Fear. Fear of the unknown and even Fear of what I already know.
It's hard to explain how it is for me lately. Simple things I would normally be able to let roll off my shoulders aren't easy to do anymore. Ordinary, basic tasks overwhelm me and are extremely difficult for me to deal with at times. Something as foolish as getting lost or an appointment getting messed up or not being comfortable in my surroundings seems to set me off and I spiral out of control. And the worst part is that not everyone understands. I guess I can't expect people to get it. For the most part even I know I'm being unreasonable and a bit crazy. I just can't help it.
I started therapy again about a month ago and it helps to address certain issues to an unbiased ear. Of course, it hasn't really "fixed" me at all. It scares me to go through these crazy corkscrew twists and turns of emotions and not be able to control them. Especially since during these times I feel very alone...which hasn't always bothered me but now it's starting to.
I have been trying my best to get back into the take-one-day-at-a-time approach but again, everything just feels so overwhelming as of late that my mind seems to never shut the fuck up. One thing I did decide to do for myself which started today was a class in Equine and Canine Massage. People say animals are an incredible source of stress relief because they can sense your feelings and emotions. I am one of those people, and always have been. Even just today on my first day, I felt better. I'm hoping this outlet will be one I can continue to use.
As for me, now I begin my countdown to the next year with this fucking disease. Hopefully I will be able to look back as I'm reflecting on my 5th year as the most positive one yet. I guess I will find out when I'm seated in front of my computer in another 364 days.
It's hard to explain how it is for me lately. Simple things I would normally be able to let roll off my shoulders aren't easy to do anymore. Ordinary, basic tasks overwhelm me and are extremely difficult for me to deal with at times. Something as foolish as getting lost or an appointment getting messed up or not being comfortable in my surroundings seems to set me off and I spiral out of control. And the worst part is that not everyone understands. I guess I can't expect people to get it. For the most part even I know I'm being unreasonable and a bit crazy. I just can't help it.
I started therapy again about a month ago and it helps to address certain issues to an unbiased ear. Of course, it hasn't really "fixed" me at all. It scares me to go through these crazy corkscrew twists and turns of emotions and not be able to control them. Especially since during these times I feel very alone...which hasn't always bothered me but now it's starting to.
I have been trying my best to get back into the take-one-day-at-a-time approach but again, everything just feels so overwhelming as of late that my mind seems to never shut the fuck up. One thing I did decide to do for myself which started today was a class in Equine and Canine Massage. People say animals are an incredible source of stress relief because they can sense your feelings and emotions. I am one of those people, and always have been. Even just today on my first day, I felt better. I'm hoping this outlet will be one I can continue to use.
As for me, now I begin my countdown to the next year with this fucking disease. Hopefully I will be able to look back as I'm reflecting on my 5th year as the most positive one yet. I guess I will find out when I'm seated in front of my computer in another 364 days.
Thursday, August 15, 2013
A Positive Story in a Negative World.
It's been a few months since I've written last and perhaps it's because I haven't had the most positive mental status lately. The past few months have been a downward spiral when referring to the side effects I've been having due to my meds. My emotions have taken hold of me to the extreme that there are times I can barely control them. My anxiety is out of control. The littlest things can set me off into this whirlwind of highs and lows and it might take a full day before I can actually step back and see myself being a complete bitch or basket case or psycho or whatever it is I'm being that moment in time.
Aside from losing myself in these moments of tornado-esque emotional battles, I have also been (steadily) losing my libido. Talk about anxiety. It's not easy when you're (a young) 28 and in a relationship with someone you love and you would rather just watch TV until you're tired rather then tucker yourself out rolling around between the sheets. That, coupled with some other woman-y issues, would cause any chick of sound mind to go nuts. Pair those things with the fact that I can see myself going batty as it is and you will get the most recent months of my life that I've been dealing with.
As the days go by, the more I feel like I'm sinking deeper into this crappy hole I've somehow become all too familiar with...and I hate it. I know I'm not making it easy on the people in my life that I love the most. Dealing with me on a good day is probably a bit of work - I can't even imagine dealing with me on one of my loony ones.
About two weeks ago, I was (as usual) falling into one of these emotional sink-holes when I was blankly surfing around on Facebook. I came across the page of a dear friend of mine who tragically lost her brother one year ago. I read her post and couldn't help but be reminded of the small miracles Life can present during the most unbearable of times. It's happenings like this that bring you back from your personal Pity-Party Hell and jog your memory of why Life is so amazing to begin with.
There are so many times I wonder to myself how heartbreaking events can happen to the lives of people who do not deserve them. Last year, the younger brother of a wonderful woman I know lost his life way too soon. He passed away in his bed at his parents house.
In their family, it is believed that moths are the spirits of lost loved ones. A day after my friend and her family buried this young man, friends and family were gathering at her parents house. There, a black and white (his favorite colors) moth landed on the handle of a door and then proceeded to fly into the house. The next morning her father was in her brother's room and turned around to find the moth in the middle of his son's pillow - the same place he passed away.
It remained there for the following 12 hours and allowed family members to touch and handle it. After that it flew away, but not before renewing the family's belief that their brother/son/uncle/loved one was still with them.
One year later, something most people would believe to be nothing short of a miracle occurred to the same family. As friends and family gathered on the evening of the anniversary of my friend's brother, a black and white moth landed a few feet away from a memorial garden planted for him. The moth proceeded to land on various members of the family including his father and my friend. It was getting late so she wound up driving home with the moth still attached to her dress. She wound up hanging the dress on a hanger and went to sleep - only to wake up periodically during the night to find the moth still on her dress.
The following morning she awoke to find the moth not on her dress, but on her bed. The moth stayed with her for two days, allowing her and family members to pet and hold it. How amazing.
Some may find this occurrence to be simply coincidental. I find this story to be truly uplifting and remarkable. How incredible a seemingly small and normally trivial event can really be when your heart and mind are open. This story amazes me each time I think about it. It restores my positivity when it seems like there is mostly only negativity surrounding me.
I have been trying to hold onto this when I feel myself starting to slip into my coma of pessimism. It is stories like this that remind me that miracles do exist. We just need to believe in them.
Aside from losing myself in these moments of tornado-esque emotional battles, I have also been (steadily) losing my libido. Talk about anxiety. It's not easy when you're (a young) 28 and in a relationship with someone you love and you would rather just watch TV until you're tired rather then tucker yourself out rolling around between the sheets. That, coupled with some other woman-y issues, would cause any chick of sound mind to go nuts. Pair those things with the fact that I can see myself going batty as it is and you will get the most recent months of my life that I've been dealing with.
As the days go by, the more I feel like I'm sinking deeper into this crappy hole I've somehow become all too familiar with...and I hate it. I know I'm not making it easy on the people in my life that I love the most. Dealing with me on a good day is probably a bit of work - I can't even imagine dealing with me on one of my loony ones.
About two weeks ago, I was (as usual) falling into one of these emotional sink-holes when I was blankly surfing around on Facebook. I came across the page of a dear friend of mine who tragically lost her brother one year ago. I read her post and couldn't help but be reminded of the small miracles Life can present during the most unbearable of times. It's happenings like this that bring you back from your personal Pity-Party Hell and jog your memory of why Life is so amazing to begin with.
There are so many times I wonder to myself how heartbreaking events can happen to the lives of people who do not deserve them. Last year, the younger brother of a wonderful woman I know lost his life way too soon. He passed away in his bed at his parents house.
In their family, it is believed that moths are the spirits of lost loved ones. A day after my friend and her family buried this young man, friends and family were gathering at her parents house. There, a black and white (his favorite colors) moth landed on the handle of a door and then proceeded to fly into the house. The next morning her father was in her brother's room and turned around to find the moth in the middle of his son's pillow - the same place he passed away.
It remained there for the following 12 hours and allowed family members to touch and handle it. After that it flew away, but not before renewing the family's belief that their brother/son/uncle/loved one was still with them.
One year later, something most people would believe to be nothing short of a miracle occurred to the same family. As friends and family gathered on the evening of the anniversary of my friend's brother, a black and white moth landed a few feet away from a memorial garden planted for him. The moth proceeded to land on various members of the family including his father and my friend. It was getting late so she wound up driving home with the moth still attached to her dress. She wound up hanging the dress on a hanger and went to sleep - only to wake up periodically during the night to find the moth still on her dress.
The following morning she awoke to find the moth not on her dress, but on her bed. The moth stayed with her for two days, allowing her and family members to pet and hold it. How amazing.
Some may find this occurrence to be simply coincidental. I find this story to be truly uplifting and remarkable. How incredible a seemingly small and normally trivial event can really be when your heart and mind are open. This story amazes me each time I think about it. It restores my positivity when it seems like there is mostly only negativity surrounding me.
I have been trying to hold onto this when I feel myself starting to slip into my coma of pessimism. It is stories like this that remind me that miracles do exist. We just need to believe in them.
Thursday, May 30, 2013
Good News is Better then Bad News.
It's one day short of 9 weeks since surgery. Yesterday, 5/29/13, I trekked into NY to get my first PET/CT combo scan (since I will need full body scans from here on out). Since Basking Ridge apparently isn't equipped with this machine, I'm now stuck with solely going to NY for any and every appointment that comes up...unless for some reason I need a "normal" test. Lovely.
Doped up on xanax and Benedryl, the prick of the finger and the IV injection weren't too bad this time around. Not to mention I made it abundantly clear that whoever was doing the stabbing needed to do it quick and on the first try.
With the combined scans, not only am I blessed with the radioactive glucose concoction, but I'm also required to drink the mouth-watering, chalky-liquid-jello-mix beverage. Yum. Lucky me!
Aside from waiting for what felt like five days, the actual scan wasn't that bad. In fact, I fell asleep, haha. Normally while laying in these machines I'm greeted with a deep robotic "breathe in...hold..."...then, "Breathe." voice. With this combined test, all I need to do is lay there without moving.
Due to the fact that Benedryl makes me drowsy as it is on top of whatever dose of xanax I decide to self-medicate with, I'm normally pretty sleepy by the time I hit whatever machine I'm being run through that day. Yesterday was no exception (especially since I'm not allowed to eat 6 hours before the test and I was taken in approximately two hours after my scheduled time). Because all I had to do was lay there for a half hour or so without having to hold my breath at random times, I passed out. I awoke with a jolt to some Tech un-velcroing the lead apron thingy that was strapped around my waist. At least I was able to catch a quick nap.
My appointment with my Oncologist isn't until this Monday, June 3rd so I wasn't really expecting the outcome of my results until then. Fortunately for me, my doctor likes to deliver good news quickly nowadays so when my mother called me this afternoon and informed me that my scans were clear, aside from the three unchanged tumors in my lungs, I was glad.
My mom said that my doctor was running out to a meeting but she asked briefly if she had any clue why the meds were working in my lungs and not everywhere else. She was met with the response: "If only curing LMS was that easy..." <-- a typical response from my Oncologist. The other piece of my mother's short conversation with my doctor was that she asked if I wanted to remain on the Lupron injections. Why wouldn't I? I found this to be a strange question being that as far as we knew, the combo of injections and daily Letrozole pills were keeping the lung masses at bay. I'm definitely going to inquire about this at our meeting on Monday.
I'm trying to train myself to recognize that any good news is better then bad news. Unfortunately for me, lately I feel as though I can't really celebrate the good news because I'm always waiting for the other shoe to drop. I realize this is not the way to think or live, but it's difficult. I CAN say, however, this surgery was kind of a breeze compared to the last two. My leg didn't really hurt too much at all (or at least what I expected) and my butt...well, I'm able to sit on it for longer periods of time as the days go on. Overall, the pain/comfort level of this surgery was a lot more "pleasant" (if that's a word I can even use...) then the last two...or even four.
I'm able to walk just fine and have the same mobility I had before going under the knife. The two spots that were chopped up look fairly normal, other then the inevitable scar-lines. I mentally prepared for some weird, con-caved spots on my calf and ass cheek but overall, they basically look the same - which I'm super happy about.
Aside from being on these meds, I've decided to try to starve these fucking evil Cancer cells by attempting to cut out as many carbs and as much sugar as I can (since Cancer is known to feed off glucose/sugar). For anyone that knows me, you know I LOVE carbs. Bread, pasta, rice, whatever...I can't even have multi-grain shit. It was difficult for the first week or so but I've been trying to stay as true as I can to this "diet" of sorts as I possibly can. I only started about 2 and 1/2 weeks ago but it makes me feel better to believe that I'm trying to fight this disease in another way on top of taking meds - plus I've lost 8lbs so far. We shall see. I've read so much about altering the way you eat to combat disease so I'm kind of tailoring a few different beliefs into my own way of eating. If anything, at least I know it's a healthier alternative to whatever I was doing before. Can't hurt, right?
Doped up on xanax and Benedryl, the prick of the finger and the IV injection weren't too bad this time around. Not to mention I made it abundantly clear that whoever was doing the stabbing needed to do it quick and on the first try.
With the combined scans, not only am I blessed with the radioactive glucose concoction, but I'm also required to drink the mouth-watering, chalky-liquid-jello-mix beverage. Yum. Lucky me!
Aside from waiting for what felt like five days, the actual scan wasn't that bad. In fact, I fell asleep, haha. Normally while laying in these machines I'm greeted with a deep robotic "breathe in...hold..."...then, "Breathe." voice. With this combined test, all I need to do is lay there without moving.
Due to the fact that Benedryl makes me drowsy as it is on top of whatever dose of xanax I decide to self-medicate with, I'm normally pretty sleepy by the time I hit whatever machine I'm being run through that day. Yesterday was no exception (especially since I'm not allowed to eat 6 hours before the test and I was taken in approximately two hours after my scheduled time). Because all I had to do was lay there for a half hour or so without having to hold my breath at random times, I passed out. I awoke with a jolt to some Tech un-velcroing the lead apron thingy that was strapped around my waist. At least I was able to catch a quick nap.
My appointment with my Oncologist isn't until this Monday, June 3rd so I wasn't really expecting the outcome of my results until then. Fortunately for me, my doctor likes to deliver good news quickly nowadays so when my mother called me this afternoon and informed me that my scans were clear, aside from the three unchanged tumors in my lungs, I was glad.
My mom said that my doctor was running out to a meeting but she asked briefly if she had any clue why the meds were working in my lungs and not everywhere else. She was met with the response: "If only curing LMS was that easy..." <-- a typical response from my Oncologist. The other piece of my mother's short conversation with my doctor was that she asked if I wanted to remain on the Lupron injections. Why wouldn't I? I found this to be a strange question being that as far as we knew, the combo of injections and daily Letrozole pills were keeping the lung masses at bay. I'm definitely going to inquire about this at our meeting on Monday.
I'm trying to train myself to recognize that any good news is better then bad news. Unfortunately for me, lately I feel as though I can't really celebrate the good news because I'm always waiting for the other shoe to drop. I realize this is not the way to think or live, but it's difficult. I CAN say, however, this surgery was kind of a breeze compared to the last two. My leg didn't really hurt too much at all (or at least what I expected) and my butt...well, I'm able to sit on it for longer periods of time as the days go on. Overall, the pain/comfort level of this surgery was a lot more "pleasant" (if that's a word I can even use...) then the last two...or even four.
I'm able to walk just fine and have the same mobility I had before going under the knife. The two spots that were chopped up look fairly normal, other then the inevitable scar-lines. I mentally prepared for some weird, con-caved spots on my calf and ass cheek but overall, they basically look the same - which I'm super happy about.
Aside from being on these meds, I've decided to try to starve these fucking evil Cancer cells by attempting to cut out as many carbs and as much sugar as I can (since Cancer is known to feed off glucose/sugar). For anyone that knows me, you know I LOVE carbs. Bread, pasta, rice, whatever...I can't even have multi-grain shit. It was difficult for the first week or so but I've been trying to stay as true as I can to this "diet" of sorts as I possibly can. I only started about 2 and 1/2 weeks ago but it makes me feel better to believe that I'm trying to fight this disease in another way on top of taking meds - plus I've lost 8lbs so far. We shall see. I've read so much about altering the way you eat to combat disease so I'm kind of tailoring a few different beliefs into my own way of eating. If anything, at least I know it's a healthier alternative to whatever I was doing before. Can't hurt, right?
Friday, April 5, 2013
Pain In My Ass...
Literally.
How many people can literally say they have a pain in their ass? Welp, I can!
Today marks one week since the surgery and all in all, I can say that I don't feel nearly as horrendous as I was mentally preparing myself to feel. The surgeries themselves went as well as they could have. My doctor was able to cut around the nerve in my leg so I have full range of motion and was up and putting weight on my left leg the day after surgery. He also did an ultrasound on my behind while I was under so he was able to pinpoint the tumor in my butt cheek and kept the incision smaller then it was expected to be - as well as saved my tattoo.
I was in the hospital for two nights/days and was released on Easter Sunday around 5pm. Overall, it definitely wasn't the worst hospital stay of my life. I still had my moments of anxiety and breakdowns along with crying sprees to my mother about how uncomfortable I was. Plus, I still had a plethora of tubes coming out everywhere which is always fun but at least I was able to breathe and it didn't feel like an elephant was sitting on my chest.
Surprisingly, I can say that my leg is just starting to hurt and I think it's because I've been up and walking around my house the last few days more then I was right when I got home. However, my butt KILLS. I literally have a pain in my butt. It makes me chuckle.
When I'm standing up straight I can see a small indent in my ass cheek. I realize not too many people are going to see this small imperfection but it still bothers me a little. As if my ass isn't flat enough. Now I have a spot where it actually goes inwards. Greeeaaaat.
When I feel the back of my leg, the incision feels lifted (gross). I'm wondering if this will go down or if it will be a raised scar. Who knows. All I do know is that I'm thankful they didn't damage or destroy the nerve in my leg because otherwise I would definitely be limited to what movements I would be able to perform and probably spend a great deal of a time with a Physical Therapist.
The doctor's team informed us that the margins were clean so they were able to remove all the Cancer cells surrounding the tumors - which is great. But of course, now comes the period of time after the crap that I need to wonder when the next issue(s) will arise. It's not a fun waiting period.
Since I had the surgery, I've had SO much anxiety. They had to give me xanax while I was in the hospital and I've had to take a pill every day since I've been home. I'm not sure if it's because I just started recovering and the whole surgery is still in my mind or if it's because I'm nervous about the future or what. All I know is I find myself crawling out of my skin at least once a day and I need help to control it. It blows.
Anyway, I guess I'm happy with how everything turned out in general. Now comes the wonderful recovery period. I'm already starting to itch at the surgery spots (along with every other part of my body since the pain meds are causing me to want to rip my skin off with my fingernails...) and just like the last surgery I had, the night sweats have begun. I had them for two weeks after my last lung surgery. I'm praying they only last for a short amount of time like that because the last three nights have been horrendous. I've woken up several times each night dripping. And the best part is, I can't shower until my stitches come out on the 15th! So I have to spend ridiculous amounts of time "washing" myself with a towel outside of the tub each day to ensure my ass and leg don't get wet. Yay. This recovery should be fun...
How many people can literally say they have a pain in their ass? Welp, I can!
Today marks one week since the surgery and all in all, I can say that I don't feel nearly as horrendous as I was mentally preparing myself to feel. The surgeries themselves went as well as they could have. My doctor was able to cut around the nerve in my leg so I have full range of motion and was up and putting weight on my left leg the day after surgery. He also did an ultrasound on my behind while I was under so he was able to pinpoint the tumor in my butt cheek and kept the incision smaller then it was expected to be - as well as saved my tattoo.
I was in the hospital for two nights/days and was released on Easter Sunday around 5pm. Overall, it definitely wasn't the worst hospital stay of my life. I still had my moments of anxiety and breakdowns along with crying sprees to my mother about how uncomfortable I was. Plus, I still had a plethora of tubes coming out everywhere which is always fun but at least I was able to breathe and it didn't feel like an elephant was sitting on my chest.
Surprisingly, I can say that my leg is just starting to hurt and I think it's because I've been up and walking around my house the last few days more then I was right when I got home. However, my butt KILLS. I literally have a pain in my butt. It makes me chuckle.
When I'm standing up straight I can see a small indent in my ass cheek. I realize not too many people are going to see this small imperfection but it still bothers me a little. As if my ass isn't flat enough. Now I have a spot where it actually goes inwards. Greeeaaaat.
When I feel the back of my leg, the incision feels lifted (gross). I'm wondering if this will go down or if it will be a raised scar. Who knows. All I do know is that I'm thankful they didn't damage or destroy the nerve in my leg because otherwise I would definitely be limited to what movements I would be able to perform and probably spend a great deal of a time with a Physical Therapist.
The doctor's team informed us that the margins were clean so they were able to remove all the Cancer cells surrounding the tumors - which is great. But of course, now comes the period of time after the crap that I need to wonder when the next issue(s) will arise. It's not a fun waiting period.
Since I had the surgery, I've had SO much anxiety. They had to give me xanax while I was in the hospital and I've had to take a pill every day since I've been home. I'm not sure if it's because I just started recovering and the whole surgery is still in my mind or if it's because I'm nervous about the future or what. All I know is I find myself crawling out of my skin at least once a day and I need help to control it. It blows.
Anyway, I guess I'm happy with how everything turned out in general. Now comes the wonderful recovery period. I'm already starting to itch at the surgery spots (along with every other part of my body since the pain meds are causing me to want to rip my skin off with my fingernails...) and just like the last surgery I had, the night sweats have begun. I had them for two weeks after my last lung surgery. I'm praying they only last for a short amount of time like that because the last three nights have been horrendous. I've woken up several times each night dripping. And the best part is, I can't shower until my stitches come out on the 15th! So I have to spend ridiculous amounts of time "washing" myself with a towel outside of the tub each day to ensure my ass and leg don't get wet. Yay. This recovery should be fun...
Friday, March 15, 2013
"If it walks like a duck...
...looks like a duck, quacks like a duck...it's probably a duck..." stated my newest Sloan doctor as he was explaining that the tumor behind my knee was most likely LMS.
We headed into the city a little early on Wednesday (March 13th, 2013) so that we could stop to eat before my 12pm appointment with my Orthopedic Surgeon. My PET Scan was scheduled for 6pm that same day and I would not be allowed to eat or drink anything (other then water) six hours before the tests. We figured we would get to the city early and eat a large brunch in case we wouldn't be able to eat for the rest of the day/evening.
We arrived at the hospital a little before 11am and my mom ran in to see if they had any cancellations for PET Scans so that I would be able to get it sooner then later. As luck would have it, they were able to get me in almost immediately (wowzers!). A little Asian nurse took me back (with my mother in tow) to get started. I informed her that I was needle phobic (as I do every single nurse or tech that I come in contact with) and to please make sure she gets everything done on the first try.
Because they inject you with a radioactive glucose thingamajig, they need to test your sugar prior to the scans. She pricked my left pointer finger...and wouldn't you know, not enough blood came out so she had to do my middle finger. Ummm...you do this for a living and you couldn't even push a little freakin pin into the tip of my finger correctly?! I, of course, started freaking out and crying and speaking at probably a much louder volume then I should have, that she better not fuck up my injection since she couldn't even prick my finger correctly.
Wouldn't you know a different nurse came over a few minutes later to do my injection. That poor woman was probably traumatized by my ranting...but I can't help it! Notice the elated look on my face after that wonderful experience...as well as the Contrast Drink of Torture next to me. Yum.
An hour later they took me for my scans and 45 minutes later we were heading up to the 4th floor to meet my Doctor of the Month. We were able to get some hospital cafeteria food prior to my appointment and finally, after both a nurse and a Resident talked to us, my doctor came in, clad in a blue plaid bow tie. Ha. I liked him already.
No sooner after shaking my hand he turned to me and told me I immediately had to go back downstairs for more scans. Uhh, what? In an Erin-like fashion I instantly thought the worst. I figured I needed more scans because it was everywhere and this was the start to a bigger nightmare then I was already living and I was doomed.
We raced downstairs where the tech was waiting for me. I guess he could tell the look on my face as I was laying there getting scanned for the second time that day that I was freaking out because he came over to tell me what was happening. Ready for this? They didn't scan my legs.
I would like to just pause for a moment and state that it's really my fault that I get so worked up all the time. I should just accept that these kinds of things ALWAYS happen to me and then perhaps I wouldn't be so frazzled constantly.
The main purpose of my visit to the hospital that day was because of my leg...and yet, my legs weren't scanned. I must be living in Delutinoid World. It just makes no sense.
Of course the tech stated that it wasn't written on my paperwork that I needed my extremities scanned as well so they didn't think they needed to do them. Whatever. I don't care whose fault it was, I just find it extremely humorous and a little ridiculous that no one ever has their shit together. I will say, however, I was pretty relieved that that was the reason for my second set of scans.
A half hour later I was heading back upstairs to finally find out what the fuck was happening. Although I really enjoy this new doctor, I practically need a hearing aid to hear the guy as well as the patience of a saint since he legit pauses for a full minute in between each thought. And if there's one thing I don't have, it's patience.
He finally told us that I would need another surgery. The tumor is attached to my left calf muscle. Joy. He said it's near a nerve but he believes he will be able to salvage it. I expressed my concern about walking and being able to do regular activities and he said that although it may take some time, I will be able to walk on flat surfaces fine but the spring in my step will probably not be as strong. I will still be able to climb stairs and jog and whatever else, but it will probably be more limited and definitely not as strong as my right side. I'll be on crutches for a while and will most likely need physical therapy.
At this point in the appointment I was (of course) upset, but at the same time a little less distressed. At least it wasn't like he needed to amputate or something crazy. I'm obviously still not happy. Why aren't the meds working everywhere? There really is no answer as no one really knows how to treat this type of Cancer. I'm an experiment. A lab rat. It blows.
I asked if the rest of the scans looked ok to which he stated that there was a suspicious mass in my upper right butt cheek. He touched the spot it was around and wouldn't ya know it's directly on my tattoo. Grreeeaaaat. He asked if I had any injections recently because that might cause the activity in the area. I did - I had my last Lupron injection a little over a month ago but I couldn't remember which side they injected me on. I thought it was my left, but I really wasn't sure. We briefly spoke about finding out and going from there.
Overall, I guess it was the best outcome it could have been knowing it could have been a lot worse. We tentatively set my surgery for Friday, March 29th since apparently he is not supposed to have an operating room on Friday's...but he said he would grovel and do his best to get me in. We scheduled pre-op and post-op appointments and left. For just two appointments, we were there approximately 7+ hours, not counting commute time. Unreal.
Today my Oncologist called (of course the one time I wasn't next to my phone) and stated on the message that the tumor is most likely Cancer, my lungs haven't changed (thank God - the ONE positive thing in this whole shabang) and that there was a questionable spot in my "buttocks". They are probably going to remove that as well while I'm under the knife, just like the "questionable" spot that was in my pelvis when I had my second lung surgery.
I cannot help but laugh at this piece of the puzzle. In my butt cheek? Seriously? Not to mention OF COURSE it's in my RIGHT butt cheek and not my left...the opposite side of my leg surgery. Depending on how invasive my ass cheek surgery is going to be, how am I supposed to move? I'll be putting all my weight on the right side gimping around with crutches...but I can't do that if my donk is healing too! This is my life!! Heaven forbid it was on my left side to make it a little easier for me! But noooo. Thanks Life. I appreciate it.
I'm praying (begging) to God that it will only be a simple laparoscopic surgery and it'll heal quick (and have minimal scarring and not ruin my tattoo and not deform my butt cheek...). I mean, how am I going to get around or sit or pee or do anything? I won't be able to lean on my left side for comfort and now I won't be able to lean on my right side either! I was joking to my coworkers that I would have to be pushed around on a wheeled cot so that I could lay on my stomach the whole time. This is unreal. Who else would get a mass in their ass cheek on top of everything else. I have to laugh about it.
Aside from, once again, thinking the worst about this new found other spot, who the heck even covers that area? Will I get a fifth doctor at Sloan? "Hey, I'm the buttocks surgeon who will be doing your surgery." Cool.
So now thoughts of having chunks of my ass cut out are dancing through my head. My boyfriend says I have a flat ass as it is. What if they can't do a small surgery and I wind up lopsided? And even flatter? I wonder if my insurance would cover butt implants. And how absurd would that be. I mean, I guess it would have it's advantages because I could choose a ridiculously good looking ass. But talk about not being able to do anything - I would assume that kind of cosmetic surgery wouldn't be all that pleasant. At least guys can pee standing up. I have a peanut sized bladder and pee probably 25 times a day. I can't imagine sitting on the bowl being comfortable after having work done on your ass. But I digress.
The "good" news is that they were able to schedule the surgery on the 29th so at least it will be over a weekend and my mom can stay with me at the hospital so I'm not sitting there alone, bored and in pain. Now I'll have someone to complain to on a ten minute interval basis (yay!).
Other then being freakin pissed and upset that now I have to worry about yet ANOTHER part of my body being inhabited by this fucking fucked up fuckity fuck-fuck disease, I'm more concerned about being as mobile as I am now. I don't want to walk with a limp and I want to be able to walk for extended periods of time without discomfort and have the option to hike up a mountain or do whatever other vigorous activities I feel like doing. I'm not so much concerned with the cosmetic difference I'll have (although he did say it will look different because he needs to remove a chunk of my calf muscle) because whatever. It is what it is and I can't change that. But I don't want to be limited able-bodied wise. Blah.
Anywho, I guess I'll be filing for Disability next week for the third time in less then two years. If I was a betting woman I would put a shitton of money down that they claim to not receive the third page of my paperwork again (for the third time), delaying my payment. But again, I guess I should just start accepting that this is my life and shit like that will alwaaays happen. As for me, I have two weeks from today to run around and appreciate being fully functional and mobile. Being that I'm not exactly the most graceful of people, the weeks depending on crutches should be fun...
We headed into the city a little early on Wednesday (March 13th, 2013) so that we could stop to eat before my 12pm appointment with my Orthopedic Surgeon. My PET Scan was scheduled for 6pm that same day and I would not be allowed to eat or drink anything (other then water) six hours before the tests. We figured we would get to the city early and eat a large brunch in case we wouldn't be able to eat for the rest of the day/evening.
We arrived at the hospital a little before 11am and my mom ran in to see if they had any cancellations for PET Scans so that I would be able to get it sooner then later. As luck would have it, they were able to get me in almost immediately (wowzers!). A little Asian nurse took me back (with my mother in tow) to get started. I informed her that I was needle phobic (as I do every single nurse or tech that I come in contact with) and to please make sure she gets everything done on the first try.
Because they inject you with a radioactive glucose thingamajig, they need to test your sugar prior to the scans. She pricked my left pointer finger...and wouldn't you know, not enough blood came out so she had to do my middle finger. Ummm...you do this for a living and you couldn't even push a little freakin pin into the tip of my finger correctly?! I, of course, started freaking out and crying and speaking at probably a much louder volume then I should have, that she better not fuck up my injection since she couldn't even prick my finger correctly.
Wouldn't you know a different nurse came over a few minutes later to do my injection. That poor woman was probably traumatized by my ranting...but I can't help it! Notice the elated look on my face after that wonderful experience...as well as the Contrast Drink of Torture next to me. Yum.
An hour later they took me for my scans and 45 minutes later we were heading up to the 4th floor to meet my Doctor of the Month. We were able to get some hospital cafeteria food prior to my appointment and finally, after both a nurse and a Resident talked to us, my doctor came in, clad in a blue plaid bow tie. Ha. I liked him already.
No sooner after shaking my hand he turned to me and told me I immediately had to go back downstairs for more scans. Uhh, what? In an Erin-like fashion I instantly thought the worst. I figured I needed more scans because it was everywhere and this was the start to a bigger nightmare then I was already living and I was doomed.
We raced downstairs where the tech was waiting for me. I guess he could tell the look on my face as I was laying there getting scanned for the second time that day that I was freaking out because he came over to tell me what was happening. Ready for this? They didn't scan my legs.
I would like to just pause for a moment and state that it's really my fault that I get so worked up all the time. I should just accept that these kinds of things ALWAYS happen to me and then perhaps I wouldn't be so frazzled constantly.
The main purpose of my visit to the hospital that day was because of my leg...and yet, my legs weren't scanned. I must be living in Delutinoid World. It just makes no sense.
Of course the tech stated that it wasn't written on my paperwork that I needed my extremities scanned as well so they didn't think they needed to do them. Whatever. I don't care whose fault it was, I just find it extremely humorous and a little ridiculous that no one ever has their shit together. I will say, however, I was pretty relieved that that was the reason for my second set of scans.
A half hour later I was heading back upstairs to finally find out what the fuck was happening. Although I really enjoy this new doctor, I practically need a hearing aid to hear the guy as well as the patience of a saint since he legit pauses for a full minute in between each thought. And if there's one thing I don't have, it's patience.
He finally told us that I would need another surgery. The tumor is attached to my left calf muscle. Joy. He said it's near a nerve but he believes he will be able to salvage it. I expressed my concern about walking and being able to do regular activities and he said that although it may take some time, I will be able to walk on flat surfaces fine but the spring in my step will probably not be as strong. I will still be able to climb stairs and jog and whatever else, but it will probably be more limited and definitely not as strong as my right side. I'll be on crutches for a while and will most likely need physical therapy.
At this point in the appointment I was (of course) upset, but at the same time a little less distressed. At least it wasn't like he needed to amputate or something crazy. I'm obviously still not happy. Why aren't the meds working everywhere? There really is no answer as no one really knows how to treat this type of Cancer. I'm an experiment. A lab rat. It blows.
I asked if the rest of the scans looked ok to which he stated that there was a suspicious mass in my upper right butt cheek. He touched the spot it was around and wouldn't ya know it's directly on my tattoo. Grreeeaaaat. He asked if I had any injections recently because that might cause the activity in the area. I did - I had my last Lupron injection a little over a month ago but I couldn't remember which side they injected me on. I thought it was my left, but I really wasn't sure. We briefly spoke about finding out and going from there.
Overall, I guess it was the best outcome it could have been knowing it could have been a lot worse. We tentatively set my surgery for Friday, March 29th since apparently he is not supposed to have an operating room on Friday's...but he said he would grovel and do his best to get me in. We scheduled pre-op and post-op appointments and left. For just two appointments, we were there approximately 7+ hours, not counting commute time. Unreal.
Today my Oncologist called (of course the one time I wasn't next to my phone) and stated on the message that the tumor is most likely Cancer, my lungs haven't changed (thank God - the ONE positive thing in this whole shabang) and that there was a questionable spot in my "buttocks". They are probably going to remove that as well while I'm under the knife, just like the "questionable" spot that was in my pelvis when I had my second lung surgery.
I cannot help but laugh at this piece of the puzzle. In my butt cheek? Seriously? Not to mention OF COURSE it's in my RIGHT butt cheek and not my left...the opposite side of my leg surgery. Depending on how invasive my ass cheek surgery is going to be, how am I supposed to move? I'll be putting all my weight on the right side gimping around with crutches...but I can't do that if my donk is healing too! This is my life!! Heaven forbid it was on my left side to make it a little easier for me! But noooo. Thanks Life. I appreciate it.
I'm praying (begging) to God that it will only be a simple laparoscopic surgery and it'll heal quick (and have minimal scarring and not ruin my tattoo and not deform my butt cheek...). I mean, how am I going to get around or sit or pee or do anything? I won't be able to lean on my left side for comfort and now I won't be able to lean on my right side either! I was joking to my coworkers that I would have to be pushed around on a wheeled cot so that I could lay on my stomach the whole time. This is unreal. Who else would get a mass in their ass cheek on top of everything else. I have to laugh about it.
Aside from, once again, thinking the worst about this new found other spot, who the heck even covers that area? Will I get a fifth doctor at Sloan? "Hey, I'm the buttocks surgeon who will be doing your surgery." Cool.
So now thoughts of having chunks of my ass cut out are dancing through my head. My boyfriend says I have a flat ass as it is. What if they can't do a small surgery and I wind up lopsided? And even flatter? I wonder if my insurance would cover butt implants. And how absurd would that be. I mean, I guess it would have it's advantages because I could choose a ridiculously good looking ass. But talk about not being able to do anything - I would assume that kind of cosmetic surgery wouldn't be all that pleasant. At least guys can pee standing up. I have a peanut sized bladder and pee probably 25 times a day. I can't imagine sitting on the bowl being comfortable after having work done on your ass. But I digress.
The "good" news is that they were able to schedule the surgery on the 29th so at least it will be over a weekend and my mom can stay with me at the hospital so I'm not sitting there alone, bored and in pain. Now I'll have someone to complain to on a ten minute interval basis (yay!).
Other then being freakin pissed and upset that now I have to worry about yet ANOTHER part of my body being inhabited by this fucking fucked up fuckity fuck-fuck disease, I'm more concerned about being as mobile as I am now. I don't want to walk with a limp and I want to be able to walk for extended periods of time without discomfort and have the option to hike up a mountain or do whatever other vigorous activities I feel like doing. I'm not so much concerned with the cosmetic difference I'll have (although he did say it will look different because he needs to remove a chunk of my calf muscle) because whatever. It is what it is and I can't change that. But I don't want to be limited able-bodied wise. Blah.
Anywho, I guess I'll be filing for Disability next week for the third time in less then two years. If I was a betting woman I would put a shitton of money down that they claim to not receive the third page of my paperwork again (for the third time), delaying my payment. But again, I guess I should just start accepting that this is my life and shit like that will alwaaays happen. As for me, I have two weeks from today to run around and appreciate being fully functional and mobile. Being that I'm not exactly the most graceful of people, the weeks depending on crutches should be fun...
Tuesday, March 12, 2013
Is That All There Is?
I think Peggy Lee said it best when she sang that song. There are times I really wonder to myself, is that all there is...to life, to work, to disease, to love, to everything...?
Approximately three weeks ago I found a lump behind my left knee slightly smaller then the size of a golf ball. If I didn't have Cancer I would've just let it go, thinking it was a cyst. But now every bump, lump, dark spot, erratic hair, flinch of pain, strange noise, weird sound, blah blah blah, I need to worry about. So we called my Oncologist. She ordered an ultrasound for a few days later.
As I was getting probed by a large Russian lady with wiry hair and velcro sneakers, she asked how long I've had the lump for. I told her I wasn't sure but I noticed it about a week prior. Of course I asked her if it looked bad to which she replied in her thick accent, "I'm not doctor, I only take picture."
She did both of my legs so when we walked out of the room, I turned the small screen to me and saw both legs, one with a fairly large looking oval shaped mass. Great.
The following day I got the kind of call no one wants - there was hard mass in the lump so I needed to get an MRI to be sure. I already knew what the outcome was going to be. The lump in my leg feels just like the one I had in my vag years ago. This blows.
The MRI showed the same thing. It's a tumor.
If LMS wasn't so common to show up in limbs I might be a little more on the positive side but being that I learned all about the new advances in prosthetics and replacement joints and bones and whatnot during my last Sarcoma Conference, I'm pretty sure I can say this fucking shit is back and now inhabiting the area right below the crease on the back of my left leg.
What. The. Fuck.
I can't help but sometimes wonder if this is all my life is going to be. A series of doctor visits and surgeries and treatments. I freakin' hope not but the last (almost) two YEARS have proven to be a practically nonstop medical nightmare.
Tomorrow I'm meeting my fourth doctor at Sloan - an Orthopedic Surgeon. I've been joking that I'll have a doctor on every fucking floor of that place soon enough. It's slightly comical. I know I should be thankful I'm at a great hospital but to be quite honest, if I never set foot inside that Building of Doom again, I will be one freakishly happy woman.
Seeing as though a little over a month ago my meds were shrinking my lung tumors, I'm kind of stumped and, well, pissed the fuck off, that out of nowhere this lovely disease has now decided to make an appearance in my fucking leg. And, of course, with all the wonderful thoughts racing around my head, I can't help but drive myself almost over the edge wondering how little, or much, this doctor is going to have to remove.
With my incredibly backwards life, I'm seeing this doctor at 12pm and then getting a PET Scan at 6pm. Joy. A six hour gap. Not to mention the waiting period of the time between the test and the results to find out if it's anywhere else! Yay!
I'm obviously hoping (praying, wishing, begging...) that this will be a simple removal and I'll be back on my feet in no time. However, who the hell knows anymore! I'm getting pretty tired of this bullshit - not gonna lie. If this is all there is then maybe I should just get over it and break out the booze and have a party, as the song suggests. Maybe that's my best bet to staying sane.
As I sit here and listen to delightfully, matter of fact delivery of this wonderful song, I figured I'd share it with you. Let's keep dancing, my friends. Let's keep fucking dancing.
Is That All There Is?
I remember when I was a very little girl, our house caught on fire.
I'll never forget the look on my father's face as he gathered me up
in his arms and raced through the burning building out to the pavement.
I stood there shivering in my pajamas and watched the whole world go up in flames.
And when it was all over I said to myself, "Is that all there is to a fire?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
And when I was 12 years old, my father took me to the circus, the greatest show on earth.
There were clowns and elephants and dancing bears
And a beautiful lady in pink tights flew high above our heads.
And as I sat there watching the marvelous spectacle
I had the feeling that something was missing.
I don't know what, but when it was over,
I said to myself, "Is that all there is to a circus?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
Then I fell in love, with the most wonderful boy in the world.
We would take long walks by the river or just sit for hours gazing into each other's eyes.
We were so very much in love.
Then one day, he went away. And I thought I'd die -- but I didn't.
And when I didn't I said to myself, "Is that all there is to love?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
I know what you must be saying to yourselves.
If that's the way she feels about it why doesn't she just end it all?
Oh, no. Not me. I'm in no hurry for that final disappointment.
For I know just as well as I'm standing here talking to you,
when that final moment comes and I'm breathing my lst breath, I'll be saying to myself,
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
Approximately three weeks ago I found a lump behind my left knee slightly smaller then the size of a golf ball. If I didn't have Cancer I would've just let it go, thinking it was a cyst. But now every bump, lump, dark spot, erratic hair, flinch of pain, strange noise, weird sound, blah blah blah, I need to worry about. So we called my Oncologist. She ordered an ultrasound for a few days later.
As I was getting probed by a large Russian lady with wiry hair and velcro sneakers, she asked how long I've had the lump for. I told her I wasn't sure but I noticed it about a week prior. Of course I asked her if it looked bad to which she replied in her thick accent, "I'm not doctor, I only take picture."
She did both of my legs so when we walked out of the room, I turned the small screen to me and saw both legs, one with a fairly large looking oval shaped mass. Great.
The following day I got the kind of call no one wants - there was hard mass in the lump so I needed to get an MRI to be sure. I already knew what the outcome was going to be. The lump in my leg feels just like the one I had in my vag years ago. This blows.
The MRI showed the same thing. It's a tumor.
If LMS wasn't so common to show up in limbs I might be a little more on the positive side but being that I learned all about the new advances in prosthetics and replacement joints and bones and whatnot during my last Sarcoma Conference, I'm pretty sure I can say this fucking shit is back and now inhabiting the area right below the crease on the back of my left leg.
What. The. Fuck.
I can't help but sometimes wonder if this is all my life is going to be. A series of doctor visits and surgeries and treatments. I freakin' hope not but the last (almost) two YEARS have proven to be a practically nonstop medical nightmare.
Tomorrow I'm meeting my fourth doctor at Sloan - an Orthopedic Surgeon. I've been joking that I'll have a doctor on every fucking floor of that place soon enough. It's slightly comical. I know I should be thankful I'm at a great hospital but to be quite honest, if I never set foot inside that Building of Doom again, I will be one freakishly happy woman.
Seeing as though a little over a month ago my meds were shrinking my lung tumors, I'm kind of stumped and, well, pissed the fuck off, that out of nowhere this lovely disease has now decided to make an appearance in my fucking leg. And, of course, with all the wonderful thoughts racing around my head, I can't help but drive myself almost over the edge wondering how little, or much, this doctor is going to have to remove.
With my incredibly backwards life, I'm seeing this doctor at 12pm and then getting a PET Scan at 6pm. Joy. A six hour gap. Not to mention the waiting period of the time between the test and the results to find out if it's anywhere else! Yay!
I'm obviously hoping (praying, wishing, begging...) that this will be a simple removal and I'll be back on my feet in no time. However, who the hell knows anymore! I'm getting pretty tired of this bullshit - not gonna lie. If this is all there is then maybe I should just get over it and break out the booze and have a party, as the song suggests. Maybe that's my best bet to staying sane.
As I sit here and listen to delightfully, matter of fact delivery of this wonderful song, I figured I'd share it with you. Let's keep dancing, my friends. Let's keep fucking dancing.
Is That All There Is?
I remember when I was a very little girl, our house caught on fire.
I'll never forget the look on my father's face as he gathered me up
in his arms and raced through the burning building out to the pavement.
I stood there shivering in my pajamas and watched the whole world go up in flames.
And when it was all over I said to myself, "Is that all there is to a fire?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
And when I was 12 years old, my father took me to the circus, the greatest show on earth.
There were clowns and elephants and dancing bears
And a beautiful lady in pink tights flew high above our heads.
And as I sat there watching the marvelous spectacle
I had the feeling that something was missing.
I don't know what, but when it was over,
I said to myself, "Is that all there is to a circus?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
Then I fell in love, with the most wonderful boy in the world.
We would take long walks by the river or just sit for hours gazing into each other's eyes.
We were so very much in love.
Then one day, he went away. And I thought I'd die -- but I didn't.
And when I didn't I said to myself, "Is that all there is to love?"
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
I know what you must be saying to yourselves.
If that's the way she feels about it why doesn't she just end it all?
Oh, no. Not me. I'm in no hurry for that final disappointment.
For I know just as well as I'm standing here talking to you,
when that final moment comes and I'm breathing my lst breath, I'll be saying to myself,
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is
Monday, February 4, 2013
Hallelujah.
The morning of January 31st, 2013 was probably one of the better moments of my life. If anything, it was definitely one of the best having to do with my health. I had taken the day off since my appointment with my oncologist was at 3:30pm that afternoon and was still in bed when the phone rang around 9:30am. It was my doctor. My tests were great - no new masses but the existing ones did change: they were smaller.
It's almost surreal to receive that kind of report after a year and a half of basically consistent bad news. Again, although this is nothing short of a small miracle, my victory is small. I realize this will be a lifelong battle for me but every little piece of positive information gives me, if nothing else, something to smile about for a while.
I decided to treat myself to a mini spa day which included a mani, pedi and a Brazilian (although I'm not sure if I can classify that as treating myself as opposed to slightly torturing myself) before my parents and I headed into the city. My pearly whites were flashing all day (even through the wax). I decided to forgive the nurses and staff from the day before (my blood work/CT's probably would've run smoother if a bunch of six year olds were working the facility for the day) and told God if he wanted to put me through that kind of disarray every time I got tests done for the rest of my life, I would be happy to deal with it as long as the outcome was as good as this last time around.
We waited over an hour from the time my appointment was supposed to be before we were called in. Normally I would've been wearing my face of disapproval (as my friends like to call it) but I was in such a good mood I didn't care if we would've been waiting all night. My oncologist gave me a print out of the scans which just gave an overall synopsis of my results so we requested a more detailed report. We also decided that since the meds were working, I would switch to a 4 month Lupron injection instead of a 3 month. I'm sure it doesn't seem like much to anyone else but to me, it's huge. Dealing with this three times a year instead of four is a big deal to me.
The next day I received a call from one of the nurses from my oncologist's office stating that the radiologist had sent over a more in depth report. It read the following:
Left lower lobe metastasis is now 1 x 0.5cm (previously 1.2 x 1cm). One of right lower lobe metastases is now 0.8 x 0.8cm (previously 1 x 1cm) and the other is now 0.4cm (previously 0.7cm).
It makes no mention of a second mass in my left lung (which I had previously) and all of the others had gotten smaller. I think this report deserves a frame and some wall space.
Although I am incredibly happy with my latest health report, I am still holding onto the fact that life is short. A brave and incredibly good person lost her war with this evil enemy two nights ago. I only hope that I can be as courageous and strong during my fight as she was during hers. You never know which way the road will take you while walking through life.
It's almost surreal to receive that kind of report after a year and a half of basically consistent bad news. Again, although this is nothing short of a small miracle, my victory is small. I realize this will be a lifelong battle for me but every little piece of positive information gives me, if nothing else, something to smile about for a while.
I decided to treat myself to a mini spa day which included a mani, pedi and a Brazilian (although I'm not sure if I can classify that as treating myself as opposed to slightly torturing myself) before my parents and I headed into the city. My pearly whites were flashing all day (even through the wax). I decided to forgive the nurses and staff from the day before (my blood work/CT's probably would've run smoother if a bunch of six year olds were working the facility for the day) and told God if he wanted to put me through that kind of disarray every time I got tests done for the rest of my life, I would be happy to deal with it as long as the outcome was as good as this last time around.
We waited over an hour from the time my appointment was supposed to be before we were called in. Normally I would've been wearing my face of disapproval (as my friends like to call it) but I was in such a good mood I didn't care if we would've been waiting all night. My oncologist gave me a print out of the scans which just gave an overall synopsis of my results so we requested a more detailed report. We also decided that since the meds were working, I would switch to a 4 month Lupron injection instead of a 3 month. I'm sure it doesn't seem like much to anyone else but to me, it's huge. Dealing with this three times a year instead of four is a big deal to me.
The next day I received a call from one of the nurses from my oncologist's office stating that the radiologist had sent over a more in depth report. It read the following:
Left lower lobe metastasis is now 1 x 0.5cm (previously 1.2 x 1cm). One of right lower lobe metastases is now 0.8 x 0.8cm (previously 1 x 1cm) and the other is now 0.4cm (previously 0.7cm).
It makes no mention of a second mass in my left lung (which I had previously) and all of the others had gotten smaller. I think this report deserves a frame and some wall space.
Although I am incredibly happy with my latest health report, I am still holding onto the fact that life is short. A brave and incredibly good person lost her war with this evil enemy two nights ago. I only hope that I can be as courageous and strong during my fight as she was during hers. You never know which way the road will take you while walking through life.
Sunday, January 27, 2013
The Numbers Game.
The other day it struck me that everything/one has to do with numbers. There are over 7 billion people in this world. I read a while back that the average human life expectancy is 78. 3-6 billion trees are cut down each year. The average person sleeps about 649,401 hours in their lifetime. The average number of puppies in a litter is 4-6. 1 in every 3 women (1 in every 2 men) will get Cancer in their lifetime.
Everything has a number. The other day I found out a number that I didn't know: the medicine that I found out was working has shown to be successful in only 10% of patients. Maybe this was told to me when I was in a xanax fog but I don't remember hearing that statistic. My mother stated that my oncologist clearly stated this fact not too long ago. A 90% failure rate is not exactly a number I want to hear.
Of course my mother, being the miracle believer she is, started raving how incredible it was for me to be one of those in the 10%. Yes, that's true...but I couldn't help but wonder how long I would remain in that small circle. I found myself questioning my numbers compared to everyone elses and honestly, it's both scary and comforting.
I know that in my life so far I am luckier then so many others and for that, I will always be thankful for the life I've been given. However, I still find myself wondering why some people will never be faced with certain challenges than others. Granted, every single person will battle their own trials and personal demons in their lifetime, don't get me wrong. I just find that in the short time I've had in this life I've seen some really good people go through way too much then they should have to.
Most recently I've watched some incredibly kind friends face some extreme challenges that unfortunately will not end with a desirable outcome. It just plain blows. When someone tells me I'm a strong person I automatically think of people like them and can't even imagine being as courageous. Although I cannot even begin to describe the affliction they will face, I can say that they've opened my eyes to the cold fact that anything can happen during your time on this earth. Some things will be amazing and some will be terrible. What I do know is that all of our numbers differ.
After coming to this realization I made an agreement with myself that from now on I would make decisions for me. I will stop doing what I think I should because that's what you're taught or told or made to believe is the right thing to do. I will start making decisions because it makes me happy. Whether or not everyone else agrees, doesn't matter anymore to me.
Now don't mistake this change of pace as being crazy or irrational. I mean simple decisions: buying those awesome shoes even though I should probably put it in my savings account. Calling out of work on a gorgeous day to take my dogs to the park. Slowing down. Living a more simple kind of life. Taking risks and not regretting or second guessing. Making mistakes. Going outside your comfort zone.
My next CT's are in 3 days. I will find out the results in 4. I'm obviously hoping for the best outcome - that the meds will still be working. After that I will have another 3 months until the next set of tests. Maybe I won't see the age of 78 or maybe I will. The point is, you just never know what life can throw at you. I'm starting to realize that perhaps we shouldn't waste it on things that don't make us happy. So what if you don't make the 1,000,000's you thought you would make. So what if you don't have the 24 room house you wanted to live in. Who cares if you only own 1 car every 15 years. Do what makes you happy and live each day for you.
Everything has a number. The other day I found out a number that I didn't know: the medicine that I found out was working has shown to be successful in only 10% of patients. Maybe this was told to me when I was in a xanax fog but I don't remember hearing that statistic. My mother stated that my oncologist clearly stated this fact not too long ago. A 90% failure rate is not exactly a number I want to hear.
Of course my mother, being the miracle believer she is, started raving how incredible it was for me to be one of those in the 10%. Yes, that's true...but I couldn't help but wonder how long I would remain in that small circle. I found myself questioning my numbers compared to everyone elses and honestly, it's both scary and comforting.
I know that in my life so far I am luckier then so many others and for that, I will always be thankful for the life I've been given. However, I still find myself wondering why some people will never be faced with certain challenges than others. Granted, every single person will battle their own trials and personal demons in their lifetime, don't get me wrong. I just find that in the short time I've had in this life I've seen some really good people go through way too much then they should have to.
Most recently I've watched some incredibly kind friends face some extreme challenges that unfortunately will not end with a desirable outcome. It just plain blows. When someone tells me I'm a strong person I automatically think of people like them and can't even imagine being as courageous. Although I cannot even begin to describe the affliction they will face, I can say that they've opened my eyes to the cold fact that anything can happen during your time on this earth. Some things will be amazing and some will be terrible. What I do know is that all of our numbers differ.
After coming to this realization I made an agreement with myself that from now on I would make decisions for me. I will stop doing what I think I should because that's what you're taught or told or made to believe is the right thing to do. I will start making decisions because it makes me happy. Whether or not everyone else agrees, doesn't matter anymore to me.
Now don't mistake this change of pace as being crazy or irrational. I mean simple decisions: buying those awesome shoes even though I should probably put it in my savings account. Calling out of work on a gorgeous day to take my dogs to the park. Slowing down. Living a more simple kind of life. Taking risks and not regretting or second guessing. Making mistakes. Going outside your comfort zone.
My next CT's are in 3 days. I will find out the results in 4. I'm obviously hoping for the best outcome - that the meds will still be working. After that I will have another 3 months until the next set of tests. Maybe I won't see the age of 78 or maybe I will. The point is, you just never know what life can throw at you. I'm starting to realize that perhaps we shouldn't waste it on things that don't make us happy. So what if you don't make the 1,000,000's you thought you would make. So what if you don't have the 24 room house you wanted to live in. Who cares if you only own 1 car every 15 years. Do what makes you happy and live each day for you.
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