Signed my life away.

Today were my first appointments for the Trial. We left at 6am (FUN) and by the grace of God ALL my appointments were on time! For some reason, my wonderful stale-watered-down-jello-contrast drink that they have me drink a gallon of for my CT Scans was exceptionally disgusting this morning. Notice the pleasant look on my face (and the lack of makeup since I was up at the crack):

The CT's went well - I got a wet reading today from my Oncologist and she said everything was good. There was a fluid mass in my lung but apparently that's considered normal after a surgery, plus another new nodule in my kidney. They're going to monitor it but it's so small that they think it's nothing. Let's hope it stays like that.

I didn't take any xanax today - which is a first for me when going to Sloan so I was a little nervous I would pass out in the chair. Surprisingly, I didn't even cry! This is also a first for me. I was proud of myself. After the CT's were done, I got my usual allergic reaction to the contrast - a pencil eraser sized hive by my right eye. I have been getting the same allergic reaction for almost 3 years since my first CT Scan and have been taking pre-meds before every CT since. Today was the first day they made me stay for an extra 20 minutes after my scans just to make sure I wouldn't go into a crazy full allergic breakdown. Apparently one day my entire body could blow up into one giant hive. That would be just my luck. Needless to say, I wasn't happy about keeping the stupid IV in past the amount of time I needed to but because they gave me an extra bag of fluids I noticed that my reaction went down a lot quicker then it usually does.

I headed over to my second appointment for my blood work at the second location of the day. I warned the nurse of my phobia, armed myself with a giant cup of Orange Juice and positioned my hand around my dads fingers to squeeze them off. After she put the 7 vials in the cup holder next to me I decided it would probably be best if I left my eyes closed the remainder of the time. I didn't pass out, I cried just a little and I was able to walk out of there within 5 minutes. Go me! Maybe I'm getting better at this? Who knows. I hope so because I'm going to be going through this shit the rest of my life.

After lunch, my dad and I headed over to the third location of the day to meet with my Oncologist and sign my life away.

I think I made the "right" decision. Let's hope nothing negative comes of this but I have to say, I do have a good feeling about everything and I'm happy with the decision I made. My next appointment is in 3 days to get my first vaccination. I'm really hoping I don't get any weird side effects from it. They stated that really the only thing that has been happening to other patients is some swelling and redness by the injection site. But it is a vaccination so I could develop some flu-like symptoms as well. That would suck because I'm scheduled for my third week in a row vaccination the day before I leave for Miami. If I'm sick for that trip I'll be PISSED. My entire summer sucked - I NEED this vacation. I guess we shall see.

So - I'm stuck for 84 weeks in the Trial. Of course I could pull out anytime I want but what would be the point of that? I need to stick it out and I will. I'm just not really looking forward to it.

My Decision.

Today I decided that I was going to do the Clinical Trial.

Am I happy about this decision? Not really...especially when I think about all the freakin needles I'm going to be getting. Do I think I made the right decision? Yes.

Have you ever just taken a step back from your life and really come to terms with the fact that you've never done anything that really meant something? I've always been searching for something that I could really be proud of myself for. Not that I'm not proud of all the accomplishments I've achieved thus far in my life - but it's different. They were all things that I did for me. That made my life better. I feel like by doing this, I'm sacrificing my comfort and my time and a good chunk of my life for a cause greater then myself. That really means something to me and maybe because I'm a firm believer that everything happens for a reason, I got this disease in order to help aid in the fight against it. Who knows.

What I do know is that while these next 84 weeks go by, I'm going to be thinking to myself, damn it Erin, why did you agree to do this! I mean, just the initial pre-Trial appointments alone are enough to drive a person to drink (which they told me I should take it easy on while receiving the vaccinations...grreeeaaattt). I go this coming Monday, August 15th, for my CT Scans, blood work and Consent Signing. But this is the fun part: My CT Scans are at 8:40am (meaning I'll have to be there no later then 7:40am) at one location. After I'm done getting pumped with radiation and my first set of needles and a giant, bad, dull-liquid-jello-tasting Contrast drink, I get to go to a second location to get my blood work. Here is where the anxiety will really set in when they put that thing that sounds and feels like a deflated balloon around my arm (I already want to puke), feel for a vein (I'm legit gagging as I type this)...and do the rest of whatever they do (I have to stop thinking about it because I don't have the money to buy myself another laptop when I barf on this one). By this point in the game I'm normally crying, holding my breath, on the verge of passing out and squeezing whoever's hand decided to come with me that day, practically to the point of breaking a few small bones. After I'm done with this wonderful juncture of my day, I get to move to a third location to (most likely) wait for at least 2 hours past the point of my scheduled time (since apparently being on time at Sloan is completely unheard of) to sign my Consent Form with my Oncologist. She physically has to see me do this in order for me to move forward with the Trial. I mean, could they make it a little more difficult?

Provided everything comes back normal with my CT's and blood work, I will begin my first round of vaccinations on Thursday, August 18th. I will need to go for three consecutive weeks in the beginning, so my following appointment would be on the 25th and then on September 1st. However, they will  need to figure something else out for that third week because I will be boarding a flight to Miami with my ladies...which is MUCH needed and even more deserved. Following the next three weeks, my vaccinations, CT's, blood work and doctor appointments will be on a set schedule, jumping every few weeks.

If it's possible, I think I'm equally dreading the amount of time I'm going to have to devote to this as much as the amount of needles I will be receiving. Like, way to take over my life, Cancer. I just really hope this leads to something great that I can say I was a part of. According to one of the nurses of the doctor running the Trial, the 40 or so people who have been in the Trial for a year (or more) have had no signs of Cancer return (which, by the way, I was thrilled to hear that people have already been going through the process and I'm not one of the first experiments). I'm one of the lucky ones who had a less aggressive strain of Cancer this last time but there are people in this Study who have gotten the disease much more frequently then I have. It makes me a little hopeful since none of them have yet to have any recurrences.

Am I worried about the future of my health? Yes. Am I nervous I'll have reproductive challenges in the future? Yes. Do I feel like I'm going to wind up having to pay a ridiculous amount of money out of my (dust-filled) pocket for something that I don't want to do? Yes. Am I dreading going into the city 50 times for things I absolutely loathe doing? Yes. Do I fucking hate this disease with a passion? Yes. But I still feel like this is something I need to do and if I don't I will always think back to myself that I should have done it.

I just really hope this is the right decision.

The right decision.

Today I decided that it was time to try to return to the gym...even without a bra. Since I haven't been in over 2 months, I needed to start slow anyway. Donning only a sports bra and two tank tops, I spent an hour on the treadmill and did some abs work. Let me tell you - it felt so good to get back...even if it wasn't my normal hardcore workout. I'm glad I am slowly starting to return to my normal life even if it feels like it's taking forever.

Some new updates in Erin's world: sneezing is still a bit difficult; although it's getting better. I've been able to complete more then not. Being that my allergies are always fun in the Summer, sneezing and blowing my nose go hand in hand with the season. While blowing my nose last week, I discovered another bizarre thing with my body which is difficult for me to describe in writing. It's basically as if my incision tightens up and twitches (?) whenever I blow my nose. Don't ask me. This whole recovery process has been a learning experience if there ever was one. The body is a curious thing. I know I will never underestimate mine moving forward.

This past Thursday, August 4th, I had my appointment with my Oncologist. I decided that since the only time I really go into NY anymore is for crappy doctor appointments, maybe this time I would start my day with something less threatening. My father and I went to MOMA (The Museum of Modern Arts) for a few hours before my appointment and it was definitely a good way to start the day. I was in better spirits then normal when they finally took me into my appointment - which was only running about 40 minutes late. Miracle of Jesus? I think so. You can tell I'm slightly happier then I normally am while waiting.

Although I asked probably every question I could think of, I'm still undecided...though I'm leaning toward doing the Trial (still). Tomorrow I plan on calling the doctor running the Study at Sloan to ask some additional questions that I believe he will be able to answer a little more thoroughly. One thing that I did find sort of fated when I asked my Oncologist to explain the Trial, is that it is only for Sarcoma patients whose Cancer metastasized to their lung and are now Cancer free.

When I explained my current situation to family and friends, the consensus was mixed. However, I think the only reason I'm really leaning towards doing the Trial is not only because it's something that I can contribute to society that is bigger then myself, but also because it seems like it was meant to be. There are only 134 participants in the entire country that are taking part in the Trial. Of these participants, they all had to have Sarcoma come back in one or both of their lungs, have had it removed and are now Cancer free. Plus, they all had to have this happen during this particular time frame, being that that Trial is starting at the end of this month. Am I wrong to feel like in some weird, star-aligned, cosmic kind of way it was meant to be? I don't think I'm too off-based to say that.

Late Friday night I was in the bathroom and took a look at my scar. I am still completely numb under my left arm and still have some numbness down towards my ribs and around to my back. I ran the back of my hand over the incision. It feels weird. As it's been healing it's been getting a little more feeling around the area but it's still desensitized quite a bit. The scar itself is kind of bumpy and of course, not very appealing to look at. I guess it all just hit me at once because a wave of nausea came over me and as I looked at myself in the mirror, the blood began to drain from my face and my lips turned blue. I stumbled back to my room and called out for my sleeping father to please bring me some orange juice before I passed out on my floor. It took over 10 minutes for the episode to subside. I'm no stranger to having this happen but normally it's when there's a needle involved. Nonetheless, they are never fun. I've decided that maybe I shouldn't look at my back for a while.

After I speak with the other doctor tomorrow, I will update my decision. Hopefully it'll be the right one.

I haven't even said yes yet...

Earlier this afternoon I called my Oncologist to make sure everything was fine for my appointment tomorrow at 3:45pm to discuss this Clinical Trial (since no one called me to confirm). The temp filling in for the normal Admin read that I was confirmed for my CT Scans at 11:40am and my consultation with my Oncologist at 3:45pm.

Umm...excuse me? I did not schedule any CT Scans. She stated that on July 22nd my schedule was changed to having both the original meeting and these CT Scans in the morning. I politely informed her that there was no reason for me to have the CT Scans prior to my meeting with the doctor since I had yet to decide if I was, in fact, going to participate in this Trial. I told her to please find out what was going on and to call me back so that I knew what was happening tomorrow.

Hours go by. Did I receive a call back? Of course not. I call again.

Conveniently she's basically already forgotten what I told her the first time around so I re-explain. She tells me as per my doctor's notes in the system, she spoke with my mother and confirmed that I would be receiving CT Scans before my meeting with her tomorrow. There is no way on God's Green Earth that my mother would confirm any sort of tests, appointments, pin-pricks, etc. for me without checking with me first. I tell this woman (who is now beginning to get on my nerves due to her less then courteous demeanor) that my mother would never have agreed to such a thing so there must have been some sort of mix up. She then proceeds in her smug way, to tell me that "this is why we like to have the patients speak directly with the doctors so that there isn't any miscommunication." Bitch, you can fuck yourself. My doctor is the one that decided to call my mother after I had left a message for her to call me back. I didn't ask for her to call my mother - she chose to call her.

Anyway, I attempted to explain further to this nasty woman that it made absolutely no sense for me to receive CT Scans before meeting with my doctor because what if I decided not to participate? It would just be added and unnecessary radiation and stress for me. Maybe it's just me but I'm not exactly sure what's so difficult to understand here.

The temp wound up calling me back to tell me that they cancelled my morning CT Scans and would try to schedule them for after my appointment with my Oncologist...but that they didn't know if this was possible to arrange for the same day. I might have to come back. I said, I don't care, it's fine. I mean, what if I ask all my questions and then decide that I really don't want to go through with this? I guess I can understand what they're trying to do - they're trying to speed up the process since the deadline is so close. They don't even know if I qualify for the Trial until I get the CT's. The only way I won't qualify, however, is if something shows on the CT's - like another tumor somewhere. Well insanity might quickly set in should something come back on it after all the shit I just went through recently. So - they better come back fine.

I haven't even agreed to participate in this thing yet and already they're making it difficult for me. Nothing can ever be easy. I'm not exactly sure why I had to argue with this woman in order for her to get the point: I'm not getting any tests done until I agree to go along with this Trial. Really - is that so hard to grasp? Apparently.

Anyway, I'm back to my one original appointment at 3:45pm tomorrow with my Oncologist. I might just get so frustrated with how this is being run that I just say no to the whole thing. Who knows. I guess I'll find out tomorrow.

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: