Reaching Out

Dear readers, survivors, caretakers, support staff, family…

Through this blog, I would love to reach out to others who can relate and offer each other love and support even if it’s abstract or black and white. I may be tiny…I may look healthier than a horse, but we all know by now to never judge others because we have no clue as to what horror and what daemons others have to battle every day just by the naked eye. I am a bulldog when it comes to seeking appropriate care. Other than that, I’m sweet as pie y’all! When I was a 20 year old student at Ohio university in 2003, I had lost an alarming amount of weight, had high fevers and everything hurt. I was admitted right away and was diagnosed with FHR which is a very rare form of sarcoma. It stands for Malignant Fibrous Histiocytoma. This tumor grew to be 8 pounds in my abdomen with not many symptoms. After getting opinion after opinion, we settled in at University Hospitals of Cleveland and my treatments and surgeries have mostly occurred at the downtown branch. It was touch and go for months and I even prepared myself for death and was ok with it. I didn’t want to see one more tear or hear one more scream on my behalf. 12 years later, here I am. A 32 year old ball of fire . I was born and raised in the Cleveland area but now reside in Findlay, with my amazing husband Aaron, my six year old daughter Lola, and my 3 year old son named Clark. Cancer has taken so much away from me and my family and friends, but it has given me SOOOOO much more that I didn’t plan at all. I was meant to be a cancer and post cancer patient and it was supposed to be a part of my journey and I wouldn’t wish it away at all. My margins have been in the clear since 2003, which I’m sooooo thrilled about. Unfortunately given all of the crazy amounts of radiation and scar tissue, we are starting to see and experience some major roadblocks and many many surgeries to build all of my organs an appropriate abdominal wall so they are safe and secure. I have had to hire head hunters, research constantly about post cancer care and prevention….and there’s not much out there for us youngsters. I’m so lucky that Amelia Baffa at the AYA institute found me and she has set things up for me that I have been looking high and low for for years!!! My goal is to create a safe place to support each other, reach out to others and, most importantly, to learn from one another. I want to laugh with you, cry with you, celebrate with you…as much as possible. Cannot wait to see where any of this goes!

“The most important thing to hold on to in life is each other!” –Audrey Hepburn.

Fondly,

Courtney Erin Roush

4 Pieces of Advice for the Newly Diagnosed AYA Cancer Survivor

Once you hear the words “you have cancer,” there are precisely a million and one things you’ll have to do, say, think, and feel. Most of them are unpleasant…a few of them are not so bad…a few are even cool. The amount of advice that a newly diagnosed cancer survivor could get is almost limitless, but here are four things that I really wish I had known from the minute I entered the hospital.

1.) Don’t be afraid to be a lazy slug that watches TV for 8 hours straight! — You’re having chemicals pumped into you; don’t worry if all you want to do is marathon House of Cards for a week. You earned it by dealing with something that most people your age don’t have to. One of the bright sides to your cancer journey is that the adults in your life will no longer feel right pressuring you to take more school credit hours, move out, find a “real” job, etc. They’re just concerned that you get better (and if they’re not, you should really evaluate if you want them in your life). So, put down the textbook, close the resume file, and watch some Price is Right, Golden Girls, and The Simpsons. You’ll be nice and recharged for all of those doctor visits, treatments, and tests.

2.) Don’t feel bad if you don’t want to explain your disease to every person you talk to– People that really care about you will want to know how you’re doing. During a call or visit, they’ll want to know things. Soon you’re going through the nature of your diagnosis and treatment 20 times a day. It is normal if telling your traumatic, personal story becomes upsetting. It is perfectly acceptable to politely tell whomever you’re talking to that you just really don’t want to talk about it right now. Well meaning friends and family do care about you; they just don’t necessarily realize how upsetting it might be for your to rehash the minutia of your daily radiation. I actually found it worked well to just say to them, “hey, I know how much you care, but why don’t we talk about something not related to chest ports!” You’ll probably want to be subtler than that, but you get the idea.

3.) Find food that you can eat, and just eat it!! —My doctors and nurses actually gave me this tidbit. If you find a food that you like, and it doesn’t make you nauseous, JUST EAT IT! Even if it’s terrible for you, if it’s something you’re craving when nothing else will do, go for it. One week I subsisted on just mashed potatoes. At one point during my bone marrow transplant, the only thing that I wanted was puffed cheese balls. Although I felt bad about wanting such terrible food, my doctors assured me that they just wanted me eating, even if it would not typically be considered a balanced diet. So, crack open the Ben and Jerry’s, Twinkies, or box of kale (something you should eat anyway, actually!) and enjoy.

4.) Read this article! —Man, I really wish this had been written when I was first diagnosed. That’s really all I’m going to say. This article nails so many great points about cancer survivorship. Just Read It!

No one can really tell you how to go about surviving, but I hope that this list alleviates some of your stress, and answers a few questions. Your life will never be exactly the way it was before, but that’s okay. This journey will make you even better. Now go relax, take a nap, talk to a friend, or watch some TV. What is most important is that you do what helps take care of you.

–Lauren Mostardi

Is anyone listening out there?

I feel like I tell people what I’m going through and there’s 2 reactions: pity or an “why do you complain so much” attitude. I mean I don’t know if I’m alone in the whole “I want to be treated like normal.” I want people to be honest or harsh if they want/need to, not hold back because it’s the cancer girl and we can’t be mean to her. They also expect cancer patients to be the sweetest people on earth. I get it, but cancer doesn’t define us as human beings. We’re human, hello, we are allowed to be sad, mad, and anything in between. Don’t get me wrong, I’m not a cold person, I just hate being pitied. Honestly, I try to explain this to people but it’s pointless most of the time. I mean is there anyone that’s listening? I’m strong and brave, yes, but I’m also human and I have my downfalls, people who I don’t care for, and things I have opinions on whether its nice or not. IM HUMAN.

— Danielle Steele

Signs for the Superstitious

I wake up to a picturesque, hot, summer day, and I start my usual routine. Gym, Trim, Laundry (GTL), as our favorite “Jersey Shore” stars would put it. As I engage in a scissor leg exercise with the “Body Ball,” an Instant Cramp shoots up the right side of my stomach.. “No Pain, No Gain,” I say aloud to comfort myself. That was the first sign to a not-so-superstitious kind of guy.

Being ambitious, driven, and optimistic isn’t always accompanied with a bubbly persona. Yet, that’s me, one of the nicest guys left in the world. Though I was raised on Principles of Islam, I simply believe in “One Higher Power”.

I read in the Christian Bible how GOD spoke to men, Once Upon a Time.. I also read why he doesn’t speak directly to man anymore.. Hence, why people look for divine signs in life.

Nearly a month goes by since my workout cramp, when I’m forced to make an non-routine doctor appointment.  The problem was the cramp felt like I pulled a muscle, which stretched down to my groin area.  The doctor diagnosed the symptoms as a simple hernia strain, and scheduled me for a small removal procedure.  Success!  A Few weeks later I’m called in for a post recovery checkup, when I’m informed my removed tissue was odd, and had been sent to the lab for further analysis.  Not long after I received word my hernia removal turned out to be a cancerous tumor, and I should see a Specialist.

Here I am, 23, Dreams, Ambitions, and Life ahead of me, when I’m thrown the biggest snapper (slider) ball EVER!  Now, here I am with a multiple choice of “GOD Why?” questions.  Things have been made clear to me, to this point in my life, by way of signs.  This here would be my biggest test of faith yet.  I must say though, I came to terms with returning to the creator, but if my mission was important enough, I’d get another take at life.

Not only did my experience take every ounce of my will power, it proved to me that no challenge will ever come close to the one I completed.  I was down a lot, don’t get me wrong, but continuing some of my weekly activities kept me in tune with “Normal” life.  What I accomplished since my diagnosis surpassed everything prior to.  The urgency lit a fire beneath me that changed me forever.  My sign was answered when my doctor said I had a chance.

Since then I’ve embarked on experiencing all the greatness this world has to offer.  I see through a light only a detail-oriented artist could render.  My optimism was tested to it’s break.  Yet, here I stand, with a testimonial today.  Now I may not be overly superstitious, but I received the answer to my calling, and have been building on it since.  In other words, I’m here to fulfill a larger purpose, or else I would’ve been swept away, and a distant memory by now.

Everyday I’m humbled by my experience.  Feeling as though I’ve been directly spoken to, I now have to bee an example.  Spread my story and message, and donate my free time to the cause and effect people.  “The Optimist” has returned with a new burning fire driven positive aura.

If your going through life, and searching for a sign… I suggest you take waking up day-to-day as a fighting opportunity to chase dreams and challenge your goals.  The life altering experience isn’t needed for everyone, but having someone close to you can affect how you deal with life.  Nine times out of Ten, we all saw someone fairly close to us go through something.  Be there hope, project your own life, be vibrant, live vividly.

–Larry Boyd