Current Thoughts...

(Written July 18th, 2012)

I’m sure I’m not the only one that starts to be on edge a few days, a week or even a few weeks before they find out some kind of life changing news. Whether it be waiting for an Acceptance Letter to college, finding out if you’re preg with a boy or girl, or awaiting some test results that will affect the way you live from here on out, we always seem to feel that twinge of uneasiness right before we hear the verdict. I’m not sure that I’ve ever been more anxious or scared or nervous or manic then I’ve been the last few days.

My CT’s are on Monday, July 23^rd. Five days away. Once I get the results I’ll find out if these injections have been working…or if it was just another failed lab rat experiment. I’m actually scared about two things: 1.) That this isn’t working and 2.) That it is. What’s the lesser of two evils? If this isn’t working then it’s chemo for me…which we all know I’ve been dreading since day 1. If it is working then it’s injections and side effects and the fear of one day being riddled with the disease forever, basically.

 Obviously if it were up to me I would take the injections over the alternative. It’s safe to say that really the only side effects (thus far) have been hot flashes. Although it’s a little annoying to be sitting somewhere completely fine and the next minute having to strip down to the bare minimum whilst fanning yourself with the nearest makeshift item you can find (and let me tell you, when it’s a few dollar bills, you don’t exactly get the most accepting looks), I’ll take the weird body temperature changes instead of some of the other daunting side effects menopause/Lupron brings on.

 So now I guess you could say I’m a ticking time bomb of sorts. I’ll be going about my business just fine and dandy and then WHAM! I turn into Linda Blair from The Exorcist when her head is spinning around and she’s spewing up green vile. It’s not a pretty sight and I feel bad for those who have been in my path when that happens.

 I should know by Tuesday or Wednesday of next week what life will have in store for me and of course, I’m terrified. Not to mention for the last two weeks my ribs on my left side under my boob feel as though I just recently got surgery. What the fuck is that about? They’re killing me to the point that I’ve once again declared The Bra my mortal enemy. They were hurting at first but then went away a few days later. Then the pain returned and has been with me since. It’s starting to make me nervous now. What the hell does that mean? All that keeps running through my head is that there’s a giant tumor pushing up against my ribs causing them to hurt.

 From now until next week I’m sure I’ll be popping xanax like jelly beans so be aware when you’re talking to me that if I have that blank, glazed over stare, I’m most likely not hearing a damn word you’re saying.

Number 2

(Written June 28th, 2012)

Almost four weeks ago on June 4^th, 2012 I received my second Lupron injection. I was able to get this done at the Basking Ridge facility which made my anxiety a little less intense and my inconvenience a little more convenient. At least going there, I only need to travel an hour to get my 3 minute doctor visit and then travel the hour back home…as opposed to taking an hour and ½ train ride or car ride into the bustling and congested streets of NY and sitting around for three hours only to be seen for 1.5 minutes meanwhile having to listen to horror stories of dying Cancer patients overcrowding the waiting room.

I was called in a few minutes after I arrived to receive my injection. I walked into the room, was told to put my hands on the counter as if I was getting strip searched and felt a sharp pinch…higher then where I thought I would feel it.

Maybe it’s just me, but I feel as though this woman stabbed me in my back…literally. I’m supposed to be receiving these injections in my ass. To me, this looks like my lower back, no? I know my ass is a little flat but I don’t think it’s as flat as my back so I’m quite sure someone – especially a nurse – could tell the difference.

Regardless, I then had a lovely lingering bruise that looked much like a spider bite (which I didn’t get when I was jabbed in the ass the last time). I’m not sure if I’m being overly paranoid, but lately I feel as though I’m bruising much easier then normal. I usually bruise fairly easy to begin with but I look like I was rough-housing sans padding with some football jocks.

Two days after this injection, I felt as though I was going through labor pains. As usual, I was sitting in my office desk chair while experiencing this charming side effect. Perhaps it’s life just letting me experience one of the not-so-pleasant things that comes along with child birth…allowing me to somewhat be “thankful” for not being able to bear children? Thanks, life…

On June 2^nd I was asked to speak at my town’s Relay for Life’s Survivor Luncheon. I’ve been volunteering with The American Cancer Society since I was diagnosed but this past year, with everything going on, I felt as if I was surrounded by Cancer SO much that I just didn’t have it in me to volunteer like I was used to doing. So when a good friend and fellow Survivor asked me to speak, I was both honored and questionable. There have been previous years where I had been asked but I found myself thinking that my journey wasn’t as story worthy as many others who were fighting this battle. With everything I have experienced this past year, I decided that I wanted to do the speech this year.

Grabbing a glass of wine and my laptop, I penned a decent speech in just under two hours the Thursday before the event. I started out the intro by explaining my initial reaction upon being asked – which again, was that I didn’t feel like my story was as intense as other Survivors. I was then knocked back into reality by realizing that no matter how intense my Cancer ride through Hell was, every person fighting this disease has a story worthy of sharing. No matter how long or extreme or painful or difficult, we all experience the same fears and emotions that the next person does. No matter who you are, it’s never easy to hear that you have Cancer. Your mind automatically starts playing tricks on you and has you wondering when your time is going to come to an end. If it’s 10 days or 10 years since your diagnosis, you still hold your breath when your doctor informs you of your test results. You always have that looming anxiety that it will come back and what other torture devices you will have to endure.

It was an honor to be able to speak and try to convey a message of hope to my fellow Survivor’s. I only wish I was able to lift some spirits while I was up there but I know it’s hard to be positive when dealing with such a negative illness.

Unfortunately, you join a club that you never really wanted to sign up for once you get diagnosed. Of course, you can also look at it like you just gained some really close friends and you’ll meet some of the most incredibly courageous people you never imagined could exist. I know I did.

My next injection is scheduled for this coming Monday, July 2^nd in NY because I’m also meeting with my Oncologist that day. I’m assuming I’ll be meeting with her to discuss my side effects. Although I know I’ve been complaining, I haven’t really experienced anything crazy yet…you know, other then feeling like I was getting stabbed in the uterus with a steak knife and having my body temperature fluctuate from cold to hot and hot to cold. I wouldn’t consider these hot flashes but rather just a change in my body temperature that I’m not used to getting.

I will say that I am waiting for more side effects to occur. Each day I expect to get them but I’m hoping they will never come. Who knows. It’s all a waiting game with this disease, is it not? I’ll leave you with my Survivor Speech:

My name is Erin Patrick and I’m a Survivor.

When I was asked to be the speaker for the Survivor Luncheon, I was hesitant to accept the offer. To me, I always felt that my journey through this Cancer battle wasn’t as intense or story worthy as other Survivor’s. I have yet to need chemo. I haven’t lost any body parts. I still physically feel healthy. Then I thought about it and realized that no matter how many surgeries or types of treatment or areas of the body affected, every single Survivor has a story worthy of sharing. We are all in a war for our lives. We all have the same fears and concerns. When we’re told, “You have Cancer,” we all share the same emotions. So here I am, to share my story with you today.

In 2008, at the age of 23, my boyfriend at the time informed me I felt swollen “down there”. I’m sure all the women can agree that if you’re swollen down there, you’re going to feel it. I told him he was nuts and went about my day. After work I decided to check myself and what I found left a huge lump in my throat. I found a hard mass, about the size of a golf ball, inside me. I immediately made an emergency trip to my OBGYN the following morning.

To my relief, he told me my Bartholin’s Gland was probably blocked, causing a cyst to form. This is a common occurrence for women. We decided to try some meds to bring down the swelling. If they didn’t work, I would have a small 15 minute procedure to have the cyst drained. Needless to say, after a few weeks on the meds, my “cyst” was growing larger and so I decided to have it drained. After waking up 2 hours after I had gone into surgery, I knew something was wrong – especially after my doctor held up his hands to show me how big my tumor was.

It took two weeks and two hospitals to finally diagnose me. On September 8^th, 2008 I was diagnosed with Vaginal Leiomyosarcoma. LMS is rare in and of itself but to have it vaginally – especially at such a young age – was nearly unheard of. Finding out I had Cancer was earth shattering enough but to learn that it was “down there” wasn’t exactly comforting. I knew I would need to get over my phobia of needles and my body would never really be a private thing again.

Shortly after my surgery I started seeing specialists at Sloan-Kettering in NY. I was told that I was one of 20 something known cases worldwide with this type of Cancer in that area of the body. I had a second vaginal surgery to remove the margins around the area my tumor was present in October of 2008 and found out a few days later that my results were negative. I was Cancer free. It was one of the happiest days of my life. I wound up going every 3 months for CT’s, check up’s, blood work and endless probing and prodding for 2 and ½ years.

In June of last year, I received a call that I knew would change my life forever. My doctor called to follow up with the results of my routine CT scans. However, instead of hearing the usual, “they’re all clear!” response, he told me he was making an appointment for me with a lung doctor at the hospital. I already knew what this meant. I had Cancer again, and it was in my lung this time.

I’m going to digress a little and just state one thing about me. I sing. It is my passion in life. I’ve been doing it since I was a baby and I honestly can’t imagine my life without it. It’s who I am. It’s what I’m known for. So to hear that I had Cancer in my lung came along with a whole crapload of worries for me. Would I lose my lung? Would I be able to sing like I used to? Would I even be able to sing at all?

When I met with my lung doctor for the first time, he showed me where the tumor was in my lung. From the scans, it looked as though it was attached to an artery. He informed me that he wouldn’t know until I was under the knife if I was going to lose my lung (or at least a large portion of it) or if he would just be able to cut around the artery. He didn’t give me very good odds for the latter diagnosis. I was devastated.

On June 28^th, 2011 I had major lung surgery on my left lung along with laparoscopic surgery on my pelvis due to a small nodule showing up there as well. The minute I woke up, the first thing I asked the nurse standing over my bed was if he took my entire lung. She smiled at me and said, “No. He only had to remove the tumor.” I couldn’t stop smiling and I made sure to tell everyone that walked by through my heavily medicated state that I still had my lung.

After 5 days in the hospital and nine weeks of Disability, I was finally able to strap a bra back on without feeling as though I was being stabbed in my back with a knife. Six months later, in December of last year, I was informed the Cancer was back yet again…in my right lung this time. I was wondering if I was ever going to catch a break. On January 3^rd of this year, I woke up with good news, yet again. My doctor was able to do a more minor surgery and I still had my right lung. It was crazy for me because I was still recovering from my left lung surgery when I had the right one operated on. Even to this day I’m still numb at the incision spots and along my back and ribs.

In April I was told that I now have Cancer back in both lungs. This is my present day “situation”, for lack of a better term. I knew surgery was no longer an option and chemo isn’t proven to really work with my type of Cancer. My Oncologist informed me that the route she wanted to take was hormone therapy. Or rather, hormone blockage therapy. When my LMS returned to my lung the first time, my tumor was stained for estrogen levels. It showed that I had an unusually high amount of estrogen in the tumor so it was decided that if I was able to somehow get rid of the estrogen, it would, in turn, stop the Cancer from returning.

Last month I received my first injection of Lupron. This therapy will push me into early menopause and I was told that due to the evil relationship of estrogen and my Cancer, I would never be able to have children. At 27, hearing this kind of information isn’t the most settling news. I will be receiving my 2^nd injection this Monday, followed by a final injection next month. At the end of July, I’ll have CT’s done and if the therapy is working, I’ll continue on it for as long as it works. If it isn’t working, it’ll be back to the drawing board.

I feel that although being told you have Cancer is one of the worst things you could possibly hear in your life, it also kind of forces you to bear a badge of courage. I never thought I could deal with everything I’ve gone through with such grace and strength. All of us are stronger then we could ever know. All of you are stronger and more incredible every day you fight this battle.

The message of Relay is Hope, and it’s one we all learn to appreciate upon hearing the words, “You have Cancer”. There are more incredible and courageous people I’ve met in this room that I could’ve ever imagined meeting in my whole life. When I was first diagnosed, I felt so alone. No one I knew had Cancer – especially no one my age. Then I found out about The American Cancer Society and I was instantly surrounded by amazing people, Surviving and fighting every day. I realized that a diagnosis is not a death sentence. It’s forced me to do things I wouldn’t normally do. I’ve taken more chances, I’ve opened my heart more to others, I’ve started to appreciate the beauty in things rather than dwelling on the not so attractive parts of life. I sing every chance I can get. I started a blog documenting my journey that Survivor’s from all over the world have connected with me through. It’s incredible how many kind words I’ve received and new friends I’ve made because of this. All of you are the reason I’ve been able to stay out of a strait jacket, locked away in a padded cell. You’ve shown me there is a reason to live and a reason to never give up. You’ve shown me there’s always Hope.

Thank you.