Fireworks.

As I was sitting on my couch half watching another nameless movie last night I thought to myself - what do I miss most about the summer that I'm losing out on this year? The thing that I could come up with is: fireworks. They're probably my most favorite thing that summer offers and winter doesn't. Is that strange?

For some reason fireworks have always induced some sort of emotional feelings for me so to miss them doesn't seem out of the ordinary. Sure, I love the beach and BBQ's and all that jazz...but you can always take a vacation in the winter to get that. Fireworks are really only around during the summer months - the 4th of July and in some towns up until Labor Day. There's nothing better then sitting barefoot in the sand on a breezy summer night watching a million pyrotechnic stars combust in a variety of colors.

Maybe I'm starting to go a little stir crazy being trapped in the confines of my house with little hope of escape. Maybe I'm just sad that tomorrow is already August 1st and the summer is racing by while I stare out the window at it. Maybe it's because as the years go on I find myself losing time like the snap of a finger and this is just another summer down the drain. Maybe I've just had one too many Rolling Rock's tonight that I'm talking a little crazy. Who knows at this point!

For two weeks I've been thinking my appointment with my Oncologist is this Wednesday - it's on Thursday. Good thing all the days just seem to mesh into each other and my social calendar isn't exactly overflowing lately. I can say this - I'm actually looking forward to going into the city for my Sloan appointment for once. It's an extremely rare occasion I actually go to that place without being in total misery. The simple mental ease I get from knowing that I only have an appointment to discuss a particular issue that won't necessarily affect my health relaxes me a little. I'm still up in the air about which direction I will choose to take with this Clinical Trial but at least I know that it will be my choice and I will finally, for once, be in control of something that happens with this disease.

My incision has been extremely sensitive lately and I'm not sure why. Is it because my skin is pulling while healing? One would think that it would have been more sensitive 2 weeks ago instead of now. My super hyper dog Lily ran across my back for the second time two morning's ago - I could have killed her. I guess little things like that which continue to agitate the area (like wearing a bra or a tight tank top or bathing suit...or practically anything pressing up against the spot if we want to be technical) will in turn continue to make it sore. But seriously - what can I do? I had the disability people from work calling me three days ago asking why I couldn't return to work and I actually had to tell the woman it was because I didn't exactly want to return to work bra-less. There are quite a few things I can handle in the work environment but that, my friends, is not one of them.

Onto another pressing issue...I've basically been reduced to ransacking my couch cushions for spare change since I have yet to receive my first Disability check. I'm not quite sure how Disability helps people when the first check you receive doesn't get to you until you're already back at work. Even though I'm not filling my tank on a weekly basis and painting the town red every weekend, I still have bills to pay. Life goes on and doesn't care that you had surgery and haven't been at work in 5 weeks. Not only do I have bills, bills, bills - but I have a (much needed) vacation with my ladies the first weekend of September that I'd like to have a little spending money for. The day my first check (which I've been informed is not really a check but rather a debit card...uhh...) comes in the mail will be the day I feel like a 5 year old on Christmas morning again. Dear Santa, thank you for this tiny plastic disc in which I can withdraw money from and be responsible so I can pay my bills on time instead of spending the money on a new pair of shoes that I would much rather get instead. The life of an adult.

I really hope I can catch one show of mesmerizing fireworks before the summer is over. That would make me happy. Back to my ice cold Rolling Rocks.

I just want to sneeze like a normal person...

It's been 4 weeks and 2 days since surgery and a few new things have occurred. First, it has become surprisingly difficult for me to complete a sneeze. I'm not sure if my allergies are acting up the last few days but I've been sneezing (or trying to) quite a bit. It seems as though the sneeze just kind of lingers in there and I wind up having a few false starts before actually getting one out, if I'm able to at all. Very strange. When I actually do follow through with a complete sneeze, it's a little painful! I feel as though this cannot possibly be the first time I'm sneezing since the surgery but then again, it's not exactly like I keep a Sneeze Journal and document every time I do so. It's very hard to remember your last sneeze unless it came along with 5 others or hurt when you actually did do it. Both of these things have been happening to me the last few days. I've been sneezing 3, 4 even 5 times in a row but I'm only able to complete a few of them - and again, once I do, I'm left with a painful pulling feeling. It's all very new and not something I'm very pleased with...as my allergies do get pretty bad from time to time.

I'm wondering if I'm not able go through with a sneeze because my lungs can't take in giant deep breaths yet. But then again, two days ago I (FINALLY) attended karaoke at a local watering hole that I used to frequent every Tuesday night before surgery and I was singing up a storm...as if no time had passed. It felt so good to get back to doing what I love. I never realized how much I love it and how much I need it in my life. There were a few times I found myself a little winded in the middle of some songs but I was able to catch my breath and sound just like I did before the surgery. For that, I am SO thankful. Here's a video from Tuesday night of me with my extremely talented and good friend, Theresa:

However, it is true when I'm home and yawn or take a deep breath it is still somewhat painful. I feel it more up in my shoulder as well as my lung. Is that weird? I think so. Come to think of it, though, when I had the tube in, in the hospital, it was pushing up against my shoulder so bad that I was practically crying every minute from the amount of pressure. I'm wondering if it has anything to do with this. Who knows. I'm sure even a month from now I'm still going to be feeling some new unusual things here and there. My body is probably mending and putting itself back together from what my doctor had to do to remove the tumor.

On a positive note - Tuesday night was the first time in 4 weeks that I was able to don a brazier. It felt good to have the girls contained again but let me tell you - the next morning was not fun. I woke up feeling extra sore all along my ribs, around to my back and of course at the incision spot. The soreness under my boob and around on my left side has yet to even start to feel better so I'm wondering when this will go away. I cannot imagine anyone that has to deal with broken ribs. If mine where only bent and pulled apart and I'm still in the same amount of pain over 4 weeks later, I cannot even fathom someone having to deal with broken ones. When would they heal?! I'm more concerned about my two crazy dogs (they're little mini pinschers) jumping on my ribs then on my incision. Even touching them now with little to no pressure, they're super tender. It's pretty nuts. Therefore, the continuation of being bra-less lives on for a longer time. Until then, it's double and triple layered clothing with super spandexy tank tops underneath. Fun times. The joys of being well endowed. BUT - I can say that I was able to rock one of my new bathing suit tops in my backyard yesterday for an hour or so while attempting to get some color on this pale body of mine. I had to pull the back of it down so that it was under my incision (which was not the most comfortable thing in the world) but at least I know I can lay out with a normal suit rather then a tank top and bikini bottom.

The humor in all this is that all my color will be in the front since I cannot expose the incision to the sun yet. Therefore, I'm not sure why I'm even laying out because I'll legit look like a Black and White Cookie once I'm slightly bronzed. That will be attractive. Watch out, boys!

I've decided to keep my appointment with my Oncologist at Sloan for Aug. 4th to discuss this Trial. I've asked countless people what they would do if they were in my shoes and the outcome was totally split, as I suspected it would be. Speaking honestly, I don't want to do this, simply because of the added stress and possible side effects down the road. But I know myself and I feel like if I don't do it I'll always think about what would have happened if I did. My mind isn't completely made up yet as I have a shitload of questions for my Oncologist as well as the doctor running the Study at Sloan, but I'm leaning towards doing it.

Annndddd...another kind of/kind of not sneezing attack. Three sneezes with only one follow through. Whhhyyyy!?! Just another thing to look forward to during this wonderful recovery process.

What to do, what to do...

Lately - I've been an emotional wreck. This whole should I or shouldn't I Clinical Trial thing is driving me insane. If it wasn't a Clinical Trial filled with my nemesis (The Needle), I might be more easily swayed to participating in it. However, those who know me have seen the blood drain from my face as if someone poked a hole in a glass of water and watched the liquid level lower little by little. I get horrible anxiety, cry (I know it sounds childish...) and sometimes pass out. The anxiety that walks hand and hand with The Needle is unbearable.

On top of all the vaccinations and blood work I'll need done for the next 3 YEARS while I'm in the Study, I'll probably be getting more CT Scans then I would normally receive should I decide not to take part in the Trial. Which means more radiation. Which means unnecessary radiation. Just what someone whose had Cancer wants pumped into their body...something that is prone to causing it. It's bad enough I'll be going back to getting them every 3-4 months for however long either one of my doctor's decides I need to go (my lung Dr. stated that I would only need to go for a year of every 4 months but I doubt my regular Dr. will agree to that - ugh)...but if I need additional tests on top of all that?

So - I have The Needle, extra CT Scans, possible serious side effects that I'll never know about until I get them down the road (IF I get them down the road...) on top of some serious, serious time. This isn't a few visits we're talking about. This is 84 weeks of being intensely in the Study, plus another (approximate) 2 years of observation after that. I am not a rich woman. It's $28.00 every time I go into the city on the train. If I drive - it's not me that drives. My dad does. I'm too afraid to ruin my new car (selfish, I know) so he's gracious enough to drive his car in when we go. That means he'll have to take the time and gas money to go. Plus, what will happen with my job? They are wonderful people and of course they were very understanding about me taking the time to be out for my surgery and the recovery afterwards but I can't tell them I need to take 50 additional days off to partake in a Clinical Trial.

It's just all so confusing. I'm damned if I do and damned if I don't. Tomorrow I guess I will need to make my decision. The truth of the matter is...I really do want to do it. It's scary and I'm nervous about the side effects in the future - but I do want to do it. If it was a pill or something like that, I would have already agreed and signed the Consent Form. People might think I'm being a little ridiculous when I say the main reason for not doing it is because of all the needles but if you had a phobia, you would understand. It's like asking someone whose deathly afraid of heights to stand at the top of the Empire State Building on a ledge with no safety rail and look down. I hate needles. Just thinking about them now - I'm already starting to get anxiety and my eyes are tearing up. The thing is - I hate that I hate them! I've tried to "get over it" and truthfully I do feel like I've gotten a little better since being diagnosed almost 3 years ago but it's still pretty bad. Knowing that this Trial only consists of getting stabbed with needles endlessly...it's just torture for me. It is true torture.

But honestly - I don't want to do this Trial for me. Who knows if it could really do anything in a positive way for me...but I want to do it for others who might find themselves in this shitty position. I would never wish something like this on anyone. Finding out you have Cancer is truly devastating. If I could be one of a few that could possibly aid in paving the way to finding a cure - how amazing would that feel? I have always been (as I'm sure many others are as well) looking for a way to feel "fulfilled". To do something that really makes you look at your life as if you did something great - something that truly helps others. This could be it.

I wish I knew the right answer.

On a side note - I went out with my mom for manicures and pedicures today for her birthday. Still unable to don a bra, multiple tank tops were worn for the occasion. The thing I love most about splurging for a pedicure is the fabulous massage chair you're stationed in. A lover of massages, I wish I could purchase one for my room. Since my incision is on my back - but healing - I was hesitant to turn on the chair but upon seeing the bliss my mother was in, I couldn't help myself. I tried not to lean back when the fake kneading hands were on the incision area but even so, I am still incredibly sore tonight. Nice going, me. I start to feel better and think I can handle these things, but clearly I cannot. Below is the healing process thus far:

To be a guinea pig or not: That is the question.

I scheduled a follow up visit with my Oncologist the last time I was in her office just in case something happened during/after surgery that would cause me to need to see her again. I called her office a few days ago asking if she wanted to go ahead and cancel our appointment since my Pathology Reports came back negative. My mom heard from her today stating that she wanted to keep our appointment.

You could imagine my initial reaction upon hearing this: WHY?

She told my mother that apparently I had high levels of estrogen in the tumor which is actually a good thing. It means that the Cancer is less aggressive then it could be. This is good news for me because a less aggressive type of Cancer means I have better chances of it not coming back. She also stated that due to my CT Scan's and Pathology Reports, she is going to stick with her "no Chemo" decision...which of course I could not be happier about. The last thing she mentioned (and the reason why she wanted to keep our appointment) is that she wanted to get my thoughts about enrolling me in a Clinical Trial.

Obviously more would be explained to me during our appointment - if I choose to keep it. But basically this study would be getting a series of vaccinations (great.) called OPT-821 over the course of a year and a 1/2. At first, I would be receiving one per week, then moving onto one per month, then one every few months and so on up until the end of a 84 weeks. The vaccination has apparently been very successful with Melanoma Patients therefore now they want to branch it out to other types of Cancer - Sarcoma's being one of them. There would be 134 Sarcoma Patients being studied across the country - myself being one of them. This vaccination is basically to see if they perhaps discovered a cure for certain types of Cancer.

The initial thought process for most might be, wow, a cure! Not mine. Instead, I cried. There are just too many questions to ask before being elated. Because they've never really tested this on Sarcoma Patients, what would the side effects be like 5, 10, 40 years down the road? What would the side effects be like now? If I never got Cancer again (God willing) how would they know if it was because of the vaccination? What if the Cancer came back (God forbid) and it was more aggressive?

I basically have no PTO days left at work due to this crappy disability (I don't accumulate days while I'm on Disability plus I have a vacation booked the first week of September and a week in November, thank goodness - meaning I have no days left)....and I would be missing a lot of work for this study. But my mom brought up a good point - it is my life we're talking about. What if this really could lead to a cure? I've always said to myself if I could participate in a study that could possibly save others from having to deal with what I've gone through, I would. But now that it's presented itself to me - I'm scared. What if it doesn't work? What if it does? Do I allow myself to be a guinea pig or not?

Again, I'm sure after my appointment with her on August 4th I would know a lot more about this whole thing then right now but it's still so confusing. Of course my doctor is going to try to convince me to partake in the study because of the possible outcome. The crappy part about the whole thing is that I need to start getting the vaccinations within a certain amount of time after my surgery - and I only have about a week to make a decision. Nothing like waiting until the last minute.

Ugghhhhh I just wish I had a crystal ball to show me the right paths to choose in life - but then again, I guess everyone does. I miss the days where the only thing I was concerned about was if a boy I liked would call me or if I wore the right outfit on Picture Day at school. Why is everything suddenly so difficult? I still feel like I'm too young to make these kinds of decisions or to go through the shit I have to endure daily. It's just not fair sometimes.

I guess I shouldn't complain. Things could be a lot worse and really are a lot worse for other people. I'm just so confused. Help.

Project.

I can remember actually looking forward to getting sick when I was younger because I knew what would be waiting for me if I did: my comfortable bed or couch with my pillows, pajamas and blanket, a few good movies of my choice, perhaps some ice cream and most importantly - no school. Today it's not so fun anymore since I have to waste a perfectly good PTO day that I could have used to play hookie to go to the beach. Not to mention that nowadays you don't stay home sick just because your head hurts - you're legitimately ill. The last time I stayed home from work was because I was sick with a fever and felt like death. That's basically what I felt like at the beginning of this disability period. I would've rather have been stuck in my shoe box of an office with no windows, the phone ringing off the hook and associates asking annoying questions.

Three weeks since surgery, I'm feeling a heck of a lot better then I did three weeks ago. I can move around without getting super winded, I can sleep in more then two positions (YAY!), I can lift my left arm above my head and my battle wounds are looking less and less threatening. Of course I'm still unbelievably sore but I can live with that. Therefore - now I'm starting to get bored. I've sat on my couch in my pj's long enough and exhausted my TV-watching energy. Now I actually want to do something.

I wish I could get back to the gym while I'm home. I've been starting to feel lazier as the days go by. There have been times in my pain medication induced state that I actually began to feel as though my body was melding into the couch cushion. However, I am still unable to wear a bra due to this lovely laceration on my back. I don't think it would be wise for a woman as well endowed as myself to hit the gym without my usual bra + sports bra + tank top + fitted t-shirt. And some women choose to surgically do this to themselves? I don't get it. But I digress.

Needless to say - I needed a project. Something to keep my mind from turning to complete mush during the upcoming weeks where I'm still not allowed to drive my 6 month old new car or do anything requiring strangers to be subjected to my free-boobin' it attire. Therefore, I have convinced my father to let me remodel our kitchen. I said I needed some exercise, no?

Obviously I'm not completely gutting the thing and my dad is helping me paint the walls BUT I have been doing (if I do say so myself) quite a swell job of stripping and painting the cabinets thus far. It's amazing what a fresh coat of paint does to a room. I am moving at a slower then snail speed but it's been keeping me busy these last few days and will probably keep me busy for a while since again, I'm probably doing everything 5x's slower then it would normally take me. But I'm glad I finally have something to do other then search through Netflix for the 347th time or open the refrigerator door to stare at the same food that's been in there for a week.

Anyway...my paint brush is calling...

Follow up

Why is it that every time I go to Sloan I feel like they're just seeing how much they can torture me before I crack? Today I had my first follow up visit since the surgery. My x-rays were scheduled for 11:45am and my appointment with my lung doctor was at 12:15pm. As my parents and I have learned from previous visits, we might as well just show up three hours late from the get-go...but since WE'RE not allowed to be late, we usually just ask how much time we'll inevitably be waiting before I'm seen and sometimes get something to eat or walk around the city. My x-ray appointment was actually only running about 10 minutes behind (miraculously) so when we were told that my appointment with the doctor was only a half hour behind, it was like an early Christmas gift. Could we actually get out of Sloan at a reasonable hour this time? Two and a half hours later I was finally seen. I just don't understand the concept of making an appointment for a certain time when I am legit NEVER seen within even an hour of when I'm scheduled for at that place. It's pure torture. Today wasn't so bad because I knew I wouldn't be getting probed and prodded and stabbed with needles - but for the appointments where I do, it's horrible. As if people who have to have appointments at that hospital aren't stressed enough, then they are forced to wait for three hours. I can't stand it.

My doctor said that the x-ray's looked good and took the bandages off. I was glad. I've been wanting to take them off myself but I didn't know if that (knowing my luck) would've caused the wound to mysteriously break open and cause a whole mess of additional problems.

I was informed that he would need to see me every 4 months for CT Scan's and a check up for a year. I was actually kind of happy about this news - not because I have to come back every 4 months (because that sucks) but because it would only be for a year and then I would switch to every 6 months again. The thing that blows hardcore is that not only do I now have to see my lung doctor, but I also have to coordinate seeing my regular doctor at Sloan as well. He informed me that he would want to see me every 3 months again when the mass in my lung was detected.

So now I have to look forward to basically spending the ENTIRE day at Sloan whenever I have my 4 month check up. There have been times I've waited three hours for an appointment. So what happens now? My CT Scans will always be the first appointment because I get wet reads done (the scans are read the same day as they're taken). Then I guess it's a toss up of whoever has an earlier time slot open that day followed by the second doctor. But now we will run into problems since every time I go my appointments are always running late. What happens when my first doctor appointment is two hours behind and then forces me to be late to my second doctor appointment? I will seriously be at Sloan from 8am until 9pm. I know it already. It will be a day full of torture. Torture since I'll be getting needles which I love so much. Torture since I'll be getting a physical which I love so much. Torture since I'll seriously be spending about 12 hours in a hospital filled with sick and pain stricken Cancer patients...which causes me so much anxiety I can't even begin to explain it. I'm getting anxiety just thinking about it!

The good news is that I'm starting to feel better day by day...although a few days ago I was blessed with a new pain. I must have strained myself doing housework or carrying around the laundry basket or something because I seriously couldn't stand or sit or walk or pee or sneeze without my lower stomach killing me. I could actually touch the pain because it was inside where the path of my laparoscopic surgery was. I can feel some scar tissue there to begin with but it was as if I popped something or pulled something in there. I really thought I was going to have to live with this new pain for a while but luckily it went away in a few days.

When I asked my doctor how much longer I would have to live with this numb and tingly feeling in my left side he said it could go away soon or I could have it for a long time. It just all depends on how quickly my body heals. Of course he had to add in there, "For some people it permanently stays like that but it's very rare." Well doc, I would say I don't exactly have the best luck with rare happenings considering I'm one of 20 something documented cases to get Leiomyosarcoma vaginally. So...great!

He asked how I was feeling otherwise and I told him I was crazy sore all along my back and under my boob. He said that this type of surgery is usually one of the most painful (cool) because they have to bend and spread apart the ribs. Just thinking about that makes me nauseous.

I'm just glad I'm slowly but surely starting to feel better. My war wounds are definitely going to haunt me for a while because I'm sure people who don't know will ask why I have a giant scar across my back. It's just another daily reminder of the shit I've had to endure but hey - it could be worse, right? Sometimes I hate saying that phrase because I'm scared that it will happen to me...something worse. But you can't live your life being scared of everything. Whatever is going to happen will happen and there's not much you can do about it.

Recovery thus far

Anyone with Cancer (or any disease for that matter) can tell you that the only thing they're ever waiting to hear is someone telling them that it's gone. Tuesday, July 6th I received this news for the second time in my life and of course I was crying with happiness. My Pathology Reports came back clear of any Cancer cells meaning that they were able to remove everything out of my lung and the nodule in my pelvis was benign. The pelvic nodule was the main concern because if that was, in fact something, there would be a whole slew of other problems to go along with it.

Now don't get me wrong - I am THRILLED with this information. However, I've heard this kind of news already, almost 3 years ago. What people who don't have Cancer don't seem to understand is that yes - OF COURSE I am ecstatic when I receive news like this...but I will always be wondering if it will come back again. There is always that possibility.

There have been some people I've known who have mistaken my realistic view of life for negativity. I don't find myself to be a negative person at all. In fact, with all the bullshit I've endured I'm actually surprised that I'm NOT super negative. But I will say this - I'm realistic. I like to examine everything from every angle. There is never one side to any story and there is never only one outcome in life. Something could always happen. With that being said, when people tell me "this is the last time!" or "you completely beat it!" I let them be happy for me and I'm most definitely grateful for the kind words. However, this is never how I look at my life. Some might mistake that for not looking at it in a positive light. To me, I know I'm just being realistic and would rather be mentally prepared should anything happen again.

When I first found the original tumor in 2008, I was assured many times over that the mass was just a cyst. After surgery, I was assured again that it was benign and that I shouldn't worry myself over it. Imagine my surprise when the tumor tested positive for Cancer and I was left wondering why I hadn't been warned from the beginning. I never want to have this happen to me again so in order to protect myself, I prepare for the worst but hope for the best. I don't think there's anything wrong with this. It's not being negative - it's being aware that shitty things can happen in life and you just have to be ready when they do.

With that being said, let me update my current physical and emotional states since surgery. I can say with a (large) smile that two nights ago I was able to sleep on my stomach for the first time. Woohoo! I can't even begin to tell you how sore the right side of my body has become since the 28th due to me putting all my weight on it constantly. I've only been able to sleep in one position since the surgery and let me tell you this - it is no fun. My neck and upper back have three giant knots in them that I keep aggravating each night I sleep in my one position. This causes soreness throughout the entire next day...so being able to switch to a different position in the middle of the night helps alleviate this a little, at least.

 

My incisions are healing nicely, I guess. The liquid bandages that were covering the four holes from the Laparoscopic surgery are starting to come off. One actually fell off completely (my right hip) and the wound underneath isn't terrible. I can say this though (which makes even ME want to barf)...my belly button is not for the weak stomached people. Belly buttons in general freak me out but knowing that mine has been infiltrated with a long surgical tube with a camera on the end grosses me out beyond belief. Ew.

 

I've been taking walks around my neighborhood each morning to strengthen my lung capacity and I actually feel better when I do. I've only been home a week but I'm already getting severe cabin fever. Being able to walk around the block a few times busts me out of the house for a little while at least. In the weeks before surgery I was joking to some of my friends that perhaps this summer would prove to be the darkest skinned I've ever been since I would have nothing else to do but lay outside recuperating. The problem is that since the incision is right along my bra line I cannot wear a bikini top. Instead, I have to wear a spaghetti-strapped tank top and pull down the straps to form a make-shift strapless top to avoid tan lines. This then poses the next problem that once I do start getting some color, everything under the tank top will be white as a ghost. Fun. Notice that my faux bikini mimics that of a risque 1920's suit. Clearly that is the look I was going for...

 

 

 

Today I got a little daring and decided to lay on my stomach hoping I would be able to get some color on the back of my arms to cancel out the bruising a little. I was laying like that for all of 20 minutes. When I got up, I almost fell back down due to the pain. Clearly I'm getting a little ahead of myself with the activities I feel like I can and cannot do. Laying on my stomach to tan my back = cannot do. My ribcage on the left side under my boob is SO extremely sore it feels like someone repetitively punched me there for a solid hour and now my muscles are mending. This is happy me before I decided to stand up:

 

 

 

Aside from the laundry list of spots where I'm either in pain or super sore, I also have quite a bit of nerve damage from surgery. While I was in the hospital I wasn't allowed to shower (obviously) due to the tubes being in. I'm sure anyone whose gone through an in-patient surgery can say they've had the pleasure of "bathing" with some type of no rinse skin cleanser. While using this I realized that I was completely numb from my waist to my neck including underneath my arms to my elbows and my armpits. That was a fun realization. I thought they had done something wrong in surgery or my epidural was hitting something in my spine causing me to lose all feeling in those areas of my body. After I mentioned this to about 4 nurses and both of my doctor's, I started to calm down a bit when all of them had the same response that I was going to be fine. I have regained most of the feeling back in the right side of my body but the left is still mainly numb. This is not the most comfortable feeling in the world; especially since the pain medicine I'm on causes me to itch a lot. When I have to scratch an itch in an area that is numb, it feels totally weird. Not to mention if it's on a spot that's both sore and numb...ew. I can't explain the feeling. It's just weird.

 

Some spots where nerve damage has occured are slowly starting to heal but with  the healing comes a tingly sensation - as if I have pins and needles in that area all the time. As long as I regain total feeling in every area that has the damage, I don't care what sensations I have to deal with.

 

The crappy thing is that no matter what position I'm standing, sitting, laying, whatever-ing in, I'm never comfortable. There is never any real relief. There's always a part of me that's sore or itchy or tingly or numb or painful. I can never just sit down on my couch and be comfortable, no matter how many pillows or comforters are barricading me in.

 

All in all the recovery is not very pleasant; however, slowly but surely I'm starting to feel a little better. I keep thanking God that all I lost was a small part of my lung because seriously, this is hard enough to deal with. If I lost my entire lung I don't think I would be able to handle it. Breathing has been a little easier for me although I'm still taking my pain meds like candy. I'm going to be out of them by the time my follow-up appointment rolls around this coming Friday. I'm nervous since throughout this entire ordeal I've felt like I've been begging my doctors and nurses for any type of pain relief. It's ridiculous.

 

Mentally I'm doing pretty well but again - I'm already starting to go a little nuts being cooped up inside my house. My mother picked me up a few nights ago to take me to her house for dinner and a change of scenery. The car ride sucked. Every bump we went over I felt in my back, chest, boobs, ribs, etc. Since I'm not allowed to drive I can't even suck up the pain and escape for a little. Do the blinds in my room remind you of prison bars? They're starting to look that way for me...

 

 

Not for the squeamish...

Yesterday was a tease because today I feel like I have been feeling for the last week. Joy. I'm wondering when I will actually start feeling better although I know I shouldn't be complaining because it has only been a week and a day.

As I was getting out of the shower this morning I couldn't help but feel a little like Frankenstein with all the lovely scars and bruises and stitches and holes now covering almost every inch of me. I realize these things will all heal in time but I can't help but feel sorry for body. If you cannot handle uncensored photographs then I suggest you stop reading now.

The thing that I just don't understand are my bruised arms - both of them. I was getting 4 needles a day (3 were Heparin shots and 1 was my daily blood work). I usually bruise a little from shots but these are just out of control. The following pictures are from this morning after my shower. Mind you, this actually looks GOOD from what they did look like...

Left arm

Right arm

Attractive, no? I have very sensitive skin so not only do I bruise easily but it takes about a week and a half for a small bruise to go away. I can't imagine how long these will take.

Of course all of the bandages are pretty much off from when I was in the hospital but I still have the bandaging across the actual lung surgery incision. That looks fun. I wonder what it will look like when it's finally healed. I was hoping that since I was losing my entire summer to this fun-filled surgery that I would at least be able to work on my tan the whole time. I'm not sure how well that is going to work out being that I can't expose the surgical areas to the sunlight - and I HATE tan lines.

Lucky for me my incision is directly along my bra line and where a bra would lay. So basically even if I do start feeling better breathing wise, my surgical area is still going to be sore causing me to not be able to wear a bra! Therefore unless I feel like going out and free-boobin' it, I'll be stuck in my house for at least a month. Talk about cabin fever.

The following pictures were taken in the hospital but everything pretty much looks the same - sans the bandages.

This shows where the epidural was in the center of my back:

After the epidural was taken out:

The large white bandages were covering my chest tube. After they took that gross garden water hose look-alike out, all that was left was a small incision that looks like a nickel slot. Not too bad except for the long strand of surgical string they left sticking of the hole. That's fun.

Lastly - aside from all the random bruise patches legit EVERYWHERE on my body - is my stomach. I have felt (and looked) pregnant since I got out of surgery. I'm guessing where my other doctor did the laproscopic surgery he had to inflate the area to search around for the nodule in my pelvis. He later told me that he couldn't find the nodule and this was the reason I wound up with 4 holes as opposed to two. Great! The camera went through my belly button (ew) but the other three holes were him trying to find the nodule to remove.

Tell me I don't look like a damn compass. When I first arrived at the hospital on the 28th I met with my doctor to sign a consent form for surgery and I told him if he ruined my tattoo on my hip I would kill him. Notice how close the incision is to it? He did a good job. The bottom arrow is on my upper vag - as if I don't have enough holes down there.

Overall, I'm sure things could've been worse but for someone who has never had major surgery or any broken bones or serious injuries, all this is a lot to take in. When I originally thought my lung scar would be more on my ribs I was hoping to get another tattoo to cover it but now that it's on my back I guess I'm just going to rock the scar. It might look pretty bad ass. We'll see.

Off to do my lung exercises!

It's been a week.

It's been one week since surgery and today for the first time I feel somewhat better then I have been...so that's a start! The good news is that my doctor only needed to take out about 1% of my lung - meaning that I still have the entire thing pretty much. Whoop! I couldn't have asked for a better outcome. I'm still waiting on the pathology reports (hopefully I'll get them tomorrow) to see if the nodule in my pelvis was anything and of course, to see if the margins taken out around the tumor in my lung are cancer free. Fingers crossed.

 

 

Two days ago I had my first shower in 5 days. It's funny what a little hot water and soap can do for one's demeanor. That's not to say that water and soap can make your physical aches any better because that, my friends, it cannot. When breathing is a struggle, it's not likely that you will be able to do much of anything. Let me go back 7 days...

 

 

My surgery wasn't scheduled until 2:15pm on the 28th. In pure Erin fashion, when they told me they could not wait until I was knocked out to give me the epidural and wanted to give it to me around 12ish to speed up the process, the sobbing and I hate you!'s ran rapid. I will admit, however, once they gave me the epidural everything that followed is completely cut out of my memory. I legit remember nothing following having a team of doctors surrounding my waiting area hospital bed, hysterically crying and having the needle placed in my back. Perhaps I'm suppressing the bad memories. It's funny because I told my mother to bring her camera to take a few pictures but when I looked at them the other day I realized I had no recollection of her taking any of them. This is me before going into surgery (which was over 2 hours LATE - thank goodness I was doped up because I would've been going nuts...), of course crying and unhappy right after getting the damn epidural in my back:

Fun times. Apparently after I started feeling a little loopy with sedatives I became much more smiley and started snapping pictures of myself and my parents. Here is one with the parents:

Do you enjoy the photo in the back of me that when lifted contained devices of torture? They have to hide that shit otherwise you would probably be throwing things out of your room. Of course the smiles came to an end when I was finally going in for surgery. I asked my mom who let me go in with my iPod (which I have no memory of listening to but have pictures to prove it) to which she replied that I allegedly refused to go into surgery unless I was able to listen to some music. Therefore, the nurse let me listen to my iPod as I was being wheeled into surgery. I asked her what I was listening to and she said she had no idea. I find this funny for a few reasons - 1.) both of my parents are technologically impaired so unless I was able to turn on and find a good song on my iPod in my la-la-land state of mind, I was probably just sitting there with the ear buds in and no actual music playing and 2.) leave it to me to want every moment of my life set to music including something as shitty as surgery. I really wonder what song (if any) was playing. I can't tell from this picture because of the glare but if you look closely, it really does look like the iPod is shut off - HA! I kill myself.

Needless to say I don't remember surgery (ugh - thank GOD) but I do remember my first vision coming out of it. I can't recall who it was but someone came over me with a big smile on their face and I asked if they took out my whole lung. They said no, that they only had to remove 1% of it. I was SO happy. I don't remember getting wheeled into the recovery room or much else but I do remember seeing my parents and just smiling from ear to ear saying that I still had my lung. 

 

 

Since the bed they put you in before you wake up from surgery is the one they wheel you up to recovery in, I didn't get out of bed that night and of course, sleeping was next to impossible. They gave me my own epidural pump but as I said probably 100+ times while I was in the hospital, the epidural did absolutely NOTHING for the pain in my lung and upper body. I'm not even sure why I had it in to be honest. Just another means of torture, I guess. I don't remember the first night but after speaking with my mother (who stayed with me overnight that first night) apparently I was complaining about the pain all night long. The next morning before I could even get something in my stomach, they were moving me out of bed to get an X Ray of my chest. Mind you, I hadn't eaten anything since about 10pm on June 27th - it was now the morning of the 29th, I had received major surgery the evening before and was now doped up on so many meds I could open my own pharmacy. Needless to say when they got me into the wheelchair the blood completely drained from my face and I pretty much passed out.

 

 

I'll never understand this about hospitals. They don't let you eat before the day which I get - but after, it's basically like they want to see you sick for as long as possible. I wasn't allowed to eat anything until later that afternoon for lunch. After my X Ray all I was able to "eat" were liquids - an Italian ice, some gross gelatin sludge, a cup of juice, etc. Yum...

 

 

The entire time I was in the hospital sucked. There was nothing they could give me to get rid of the pain in my upper body. How a hospital such as Sloan couldn't provide me with ANY kind of medicine to relieve SOME of the pressure/pain still baffles me. The only thing that seemed to work whatsoever was this non-narcotic, anti-inflammatory med that they put through my IV once every 6 hours. I cannot recall the name of it for the life of me and I know I must have asked about 60 times what it was called. What I couldn't comprehend was that if this was the ONLY thing giving me any sort of relief - why was I only able to have it once every 6 hours? Let me tell you, it was not enough. After about 3 hours the medicine would stop working and I was basically just left there to be in pain. They kept telling me to click my little epidural button - I can't express how many fucking times I told them that the epidural was doing absolutely nothing for me. Can you tell I'm still bitter? It just doesn't make any sense to me.

 

 

Overall though, the nurses were nice and were there when I needed them except for Thursday and Friday. When I say this, it is not an exaggeration. If there was a Hell on Earth, Thursday would've been hell for me. It probably would've been hell for anyone. It was legitimately a day of pure torture. I woke up for the 10th time Wednesday night and realized that it was actually Thursday morning. It was probably 8am. I buzzed for a nurse to come help me with my pain medicine as I knew I would be due in a few minutes to receive the only thing that was helping me. When I still hadn't seen anyone 20 minutes later, I buzzed again. They said the night nurse had left and a new nurse was coming. Um, ok...so where the fuck were they? I waited over 45 minutes before my new MALE nurse came strolling in the room. I felt as though an elephant was sitting on my chest - I couldn't breathe. I explained to him that the only thing helping me was this certain medicine to which he disappeared for another 10 minutes to go get it while I sat suffering. I already hated him.

 

 

The entire day was like this. I knew I would be due for something and he would be nowhere to be found. Call me crazy but I feel like being that it's your JOB to know what the fuck is going on, you should already be in my room when certain things are due. I must have buzzed this guy four times explaining to him that the med that was originally helping me was now not. Nothing was working. I couldn't breathe and the pressure on my upper left side and shoulder was so extremely bad that I kept crying all day. Earlier in the morning my doctor had come in and I explained that something needed to be done that wasn't being done because this was already a nightmare (and it was only 7am). He stated that perhaps it was the chest tube that I had in - maybe it was pushing my lung into an awkward position and if it was adjusted a little it would relieve some of the pressure. I stated this over and over to my idiot male nurse and he told me he would check to see if something could be done. I also requested that my catheter be removed since it was 1 of 4 tubes that I knew I didn't need sticking out of me anymore. He said he would check on that too.

 

 

As some of my friends that visited me on Thursday can attest, I was absolutely miserable and I HATED this moron that was in charge of me that day. He didn't listen to me at all. His only answer for me was to push my damn epidural button. It was after 5pm when he came into the room for maybe the third time all day to say that he was going to take out my catheter. I looked at him like he had 30 heads. So basically you had me suffer the entire day and now you tell me YOU'RE the one that's going to be poking around in my vagina? No thanks. I told him I preferred a female nurse to do that to which he got an attitude and asked me why. Why? WHY? I wanted to tell him to fuck himself if he really needed to ask me why I wanted a female nurse to take out my catheter but I refrained and explained that I felt more comfortable having a woman do it. He said with an attitude, "Well there are no female nurses that are free to do it now so you'll probably have to wait until around 7pm then." Go to hell you piece of shit.

 

 

I should have said with an attitude back, I've been waiting all damn day anyway; what's another few hours? At this point I didn't care how long I had to wait - there was no way I was letting him near me if I didn't have to. He was a total douche-bag and you can bet your ass I'm going to get this asshole in trouble if it kills me.

 

 

Long story short, a female nurse came in around 7pm to take out my catheter (YAY!) and adjust the chest tube an inch or so (THANK GOD). Let me tell you - as soon as she pulled out the tube in my back just a tiny bit I immediately felt relief from the horrible pressure I had to endure the entire day. I don't understand why something wasn't done sooner. It was seriously an entire day of torture that I had to tolerate when it could have been alleviated hours prior. I was so upset but relieved that I could finally breathe.

 

 

I had different nurses each day and night except for lucky me when I was blessed with having the same idiot male nurse on Friday. All I kept telling myself was that I was getting out of that damn hospital the following morning so I only had to endure 1 more day of this. The best part about this is when I was doing my nightly laps around the hospital floor Thursday night (to strengthen my lungs) a nurse I never saw came up to me to ask me if the asshole was my nurse that day. When I said yes she told me that he asked her to cheer me up since he was being kind of a "bitch" the whole day. Uhhh, are you serious right now? That lovely piece of information is definitely going in my complaint letter. She actually used the word "bitch". Nice.

 

 

The rest of the tubes came out later in the day on Friday and I was finally free to walk around without a damn pole attached to me. Other then the douch-bag "nurse," having all those tubes in the entire length of my hospital stay was the worst part. You're stuck in a damn hospital gown until the catheter can come out and after that, although you can wear your own clothes, you're still dragging this pole with you everywhere you go. 

 

 

I was lucky enough to have my own room up until this point so when I found out someone was being put on the other side (although legit it's about 2ft away) of the room Friday night, I wasn't too concerned since it was my last night. I was wrong. I was exhausted from getting no sleep any of the nights I was in the hospital and I was super excited to get my first night's "sleep" in without having tubes sticking out everywhere. This roommate of mine could not have been any worse. Her husband stayed overnight with her so the two of them were talking in a normal, loud speaking voice up until after 11pm when they knew the lights on my side of the room were off a little after 9pm. Not only did they continue talking as if there wasn't another person trying to sleep in the next bed, but their TV was blasting like they were home on their couch. Great. Finally when they settled down after 11pm I thought this wasn't so bad and I would finally be able to sleep. NOPE. The patient's husband started snoring.

 

 

Side note: All those that know me know I need complete silence and darkness in order to have a decent night's sleep. Clearly I had none of this my entire stay at Sloan but I dealt with it. Snoring, however; snoring I CANNOT deal with.

 

 

When I say that this man was snoring so loud you could hear him down the hall, I'm not being my normal over-exaggerating self. It was horrible. I got out of bed and went down to the nurses station to state that this man was snoring and I couldn't sleep. I was given ear plugs. I figured I'd try them out. Seriously, they did absolutely nothing to muffle out the sound. I even tried listening to my iPod. Nope. Nothing helped. Long story short, I picked up my pillows and blankets and the fucking recovering CANCER PATIENT walked her ass down to the floor lobby and slept on the couch for a few hours because that was quieter then my room. I was livid. Are you fucking kidding me? This will clearly be going in my complaint letter as well. How anyone could allow someone who just had lung surgery to have to sleep on a couch in the common room of the floor instead of waking this IDIOT up and having HIM sleep on the fucking couch is beyond me. It makes me so heated to think about it now. 

 

 

I wound up waking up (of course) a few hours into my stay on the couch and went back to my room. The snoring had gotten a little quieter but not by much. I just laid in bed with my ear plugs in and my eyes closed. This was fucking insanity. 

 

 

The next morning I made it a point to tell the woman in the bed next to me that I slept on the couch last night because her husband kept me up all night. She said I should have said something so that he could go sleep on the couch. Ha. I didn't realize it was my job to kick someone out of their room. At this point all I could think was, get me the fuck out of here.

 

 

My parents picked me up around 10am on Saturday morning. I was so happy to be going home. All I can say is that this past week has SUCKED and the only thing I keep thinking is, what if they took out my entire lung? I can barely handle this let alone something that might have been 10x's worse. Every day is a struggle but like I said, today I felt the slightest bit of positive change. We'll see. I'll leave you with a picture of me with my "best friend" for 4 days (the pole):