It's a miracle!

Yesterday was my 2nd vaccination for the Trial...and things actually ran smoothly! It might be a small miracle. I called before I left the house to say I was on my way, the lab called me back within a few minutes to say that I was checked in and they had began thawing out my vaccination. We arrived there and only waited around 10 minutes before being called in. The nurse had everything ready so I was in and out of the lab within 5 minutes. The shot wasn't nearly as painful this time going in, I didn't cry and my anxiety level was at it's minimum. Hooray! This is me, happy (for once) after getting my vaccination:

What happened the last time was that my arm was totally in pain right after getting the shot. This time, it really didn't hurt. Today, though - my arm hurts bad. The last time it lasted about 3 days of me not really being able to sleep on it or touch it. Aside from the pain I also got a little swelling and a red blotch about the size of a silver dollar. BUT, no flu-like symptoms or anything crazy so I'm happy about that. Hopefully it stays that way and as I continue to get the vaccinations it doesn't get worse.

Other then my first really fabulous visit to Sloan yesterday, I don't really have any new news. I can say that my ribs are still very sensitive and the same areas that were numb, still are. It doesn't help that I've been getting back to my normal social life where wearing a bra is a necessity. This might be causing my ribs to remain in pain constantly. Who knows. My scar remains pretty gnarly looking and hasn't really started to look any better then it did a month ago. The arrow is pointing to my vaccination area and if you look closely, you can still see some bruising left from my freakin' surgery over 8 weeks ago. My body is nuts. You'd think at least the bruises would have went away by now.

In 3 days I will have been out for 9 weeks. Have I received my FIRST Disability check as of yet? NOPE! This is just getting to the point of insanity now. Seriously, anyone going out on Disability in the state of New Jersey needs to save their pennies for months before deciding to get sick (as if we have a choice); otherwise, you'll be dancing for dollars as soon as you're able to walk. It's absurd.

My next vaccination is this coming Wednesday since I will be jet-setting to Miami on Thursday morning. I'm hoping things will go just as quick and easy as they did this week but with Sloan it's always a gamble.

First Vaccination = Day from Hell.

Today I was scheduled to receive my first vaccination for the Trial. Along with this came more blood work and a visit with one of the doctor's. My first appointment was scheduled at 8:45am, my second at 9pm and my third at 9:30am - all in the same building this time. I was thinking to myself that perhaps this might be an OK day being that I wasn't going to be there super long. Why is it that I find I'm perpetually wrong when it comes to anything having to do with going to Sloan?

My dad and I got there on time this morning where I was stabbed in a not-so-pleasant vein in my forearm for my (gag) second set of blood work of the week. I cried. It was no fun. At this point while I'm calming down the nurse proceeds to chat about the process going along with getting the vaccinations and I hear her say that it will take about 2-3 hours so I should come back. Um, excuse me?

The nurse goes on to explain that they can't thaw out the vaccination until I physically "check in" or after I see a doctor and they give the lab the go-ahead. What the fuck is the point of making an appointment if it means diddly-squat? I just don't understand. Call me crazy but if I make an appointment for a certain time, I'm going to think it's for that time - not for 2-3 hours later. So now I'm pissed off. But whatever. I'll get over it. I head up to the 5th floor to meet with a doctor for whatever reason that may be since I already saw my Oncologist three days ago (she wasn't around today so she scheduled me to meet with her colleague).

I stop at the desk to tell them I'm there and ask how long it'll take - being that again, nothing is ever on time at that place. The girl behind the desk says the doctor is running on schedule and I'll be called back shortly. An hour later I'm still waiting. I finally get called back into the room to meet with the doctor...where I proceed to wait for another 30 minutes. At this point my blood is boiling. It's like you have to go in search for someone to tell you what the fuck is going on since no one ever has the common courtesy to tell you that it's going to take a little longer then expected. Notice how happy I look.

FINALLY the doctor comes in...with a chip on her shoulder. Great. I attempt to ask why I'm meeting with her since I already saw my Oncologist three days prior. She says it's part of the protocol that I need to meet with a doctor to get a physical and get my blood pressure, temperature, etc. checked (which I already did prior to seeing her since every time you meet with a doctor you get your vitals taken). She proceeds to listen to my heart for a total of 60 seconds. I then ask why no one explained to me that every time I would have to get a vaccination it wouldn't be ready at the time of my appointment. She tells me it's part of the protocol. I tell her that I'm not trying to be nasty here but I do work full time and I don't have all the time in the world to take off of work to sit at Sloan for hours after my appointments are scheduled for. I ask if I could call when I'm on my way in to speed up the process so I'm not just sitting around for hours waiting for something that will take 5 minutes. She cuts me off mid-sentence with a bitch-ass attitude stating that I signed a Consent Form and this is the protocol and basically if I don't like it I can withdrawal from the Trial. Um, what the fuck is your problem you nasty BITCH. Seriously, this is the first fucking time I'm doing something like this, I have no idea what is going on, I'm practically donating my fucking body to science to benefit YOU people and you're making it seem like YOU'RE doing ME a favor? I don't think so. It's like they really make it difficult for you to feel good about the decision you made...and that really makes me upset. It took me such a long time to finally feel good about saying Yes to this and now I feel like I'm starting to regret my decision. I have no regrets in my life and I don't want to start now.

Is it me or do I always seem to have some sort of problem? I just seriously cannot understand why nothing is ever easy in my life. I just have to laugh about it because if I don't I'll go out of my mind.

She leaves the room without saying goodbye, or thank you, or talk to you soon, or anything. Just leaves. With the same attitude she came in with. Shortly thereafter the same nurse I spoke with on the phone a few weeks ago to discuss the Trial comes in to speak with me further. I ask her the same questions and receive different answers. I explain to her that I'm not in the least trying to be difficult - just trying to understand what the fuck is going on. My dad was about to blow a gasket at this point. He told me he wanted to knock the doctor's teeth out...with good reason. She would've deserved it. As if it isn't stressful enough to have this disease, come into the city, get told you'll be waiting 3 hours past the time of your actual appointment...to receive some no-name drugs getting pumped into your body with unknown side effects...at least be a little nice. Is it really that difficult? Apparently so.

The nurse calls the lab to see if my vaccination was called in yet - no. Of course not! Why would it be?! She tells me they'll call me when it's ready. My dad and I go out to brunch, walk around the city a bit, buy some books at Barnes and Noble and head back to Sloan. Two more hours have surpassed. I check in at the desk when I get back to the 4th Floor and they tell me they're not ready yet. Another 45 minutes goes by before they call me back. At this point I just want to get the fucking thing over with already and get the hell home.

I give my normal explanation of how I have a phobia of needles and to please just get it over with as quickly as possible. The vaccination hurts - a lot more then I thought it would. It's not the needle, but whatever it is that's being injected. It stings and makes my arm sore. The nurse asks me to stay for 10 minutes just to make sure I don't get any severe side effects. It's after 1:15pm when I'm walking out the door. I arrived at Sloan a little after 8am (with my last appointment of the day scheduled for 9:30am).

If this isn't torture, I don't know what is. I can understand that there are times things happen. Sometimes you can be running behind - I get it. However, when you're the one that's waiting hours at least 98% of the time you go, it can get a little fucking frustrating.

While my dad and I were walking to the car, my arm started to hurt. It's really sore now as I write this, hours later. BUT, it was explained to me that practically everyone in the Trial developed swelling and redness at the injection site - I don't have this thus far. Watch, tomorrow I'll wake up and my entire arm will be double the size it normally is. That's my luck, folks!

Speaking of my luck (or lack thereof), I called Disability two days ago to ask why I still have yet to see my FIRST check. They proceeded to tell me I was missing the Employer section of my paperwork. Oh really? You mean the same Employer section that was faxed along with EVERYTHING ELSE back in JUNE? So - I faxed everything once again and have to call back tomorrow to make sure they got everything this time. Are you kidding me? I haven't been paid in almost 8 weeks, people. I am legit broke. If you see me on a local street corner, don't be alarmed. This is what my life has amounted to.

In a nutshell - today was not the most pleasant. Some of my friends and my mom suggested rethinking my decision if this is what it's going to be like. I really don't want to pull out of this. It took me a long time to come to terms with the fact that I was going to put myself through my own personal Hell and I was actually content with that...until today. I wish someone could just explain to me why things in my life never run smoothly. I really try to make it happen! It just never does. I already can't wait for these next 84 weeks to end.

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.