CATE'S BLOG

CANCER: THE CANCER DIAGNOSIS ROLLER COASTER

The Many Rants, Raves, and Rambles of Catherine

The Cancer Diagnosis Roller Coaster

People always ask me how I reacted when I got cancer…. I knew something was wrong before my appointment had even begun. Something felt “off”, and more off than it normally did, which is saying something. I went into my appointment, stripped myself of my clothes, and laid there feeling as emotionally naked as I was physically.

You as a patient can definitely tell when something isn’t right. Doctors and nurses try to play it cool, but you can sense it in the air. It’s almost like the air thickens and gets heavy. The doctor stops making eye contact, the nurses all start moving faster and start making more weird/uncomfortable small talk. It gets to the point where you just finally utter “something is wrong, isn’t it?” 99% of you knows that they’re going to say yes, but of course you still have that 1% of hope buried deep deep in the back of your mind, setting you up for that tiny bit of disappointment.

But then, you never know what you want when you initially go into an appointment while having strange symptoms. A diagnosis is scary, but a diagnosis is something you can work with. It makes whatever you have identifiable, understandable, and processable. Whereas having a bunch of symptoms and getting the “we don’t know what’s wrong” is just as frustrating.

As soon as the doctor said that there was a mass in my ovary a rush of emotions hit me like a wall…. First was weirdly, relief. Relief that there was something indeed wrong and I wasn’t going crazy with this feeling that something was off. But that “relief” basically lasted .0002 seconds.

I got mad next. Really really mad. I received this news in July of 2015… to help you understand where this anger comes from we need to go back in my story a little bit to February of 2015. I went to see a surgeon at that time for a consult to remove my one and only ovary, with the possibility of harvesting the eggs before anything bad happened to it. My doctor reassured me that the likelihood of that happening wasn’t very high, and that my ovary was very important for hormone production and put me on a medication.

So I yelled, and I cried and I was mad. Mad that something I had tried to prevent just months earlier had come to pass. I felt unheard and misunderstood and young. I was mad that no one listened to me because “I was only 19.” Mad because this shouldn’t be my life because I’m “only 19.” Mad and sad and felt so gipped about life. All I could keep thinking was “this isn’t fair.”

He told me that it would take us a couple of weeks to get a more concrete diagnosis from my biopsy, and so I went on my way, sent off into the world to deal with a mountain of emotions and questions.
The next week I was a mess. I didn’t want to tell anyone what was going on, because frankly, I didn’t want to accept there was anything going on. I was cranky and mad towards everyone and everything. I felt short changed by life. But what could I do? Tell my friends and family that the doctors found something, but they didn’t know what it was, what it meant, or what they were going to do yet? That seemed like a lot of explaining for nothing. And so me being me, I decided to wait.

I got a phone call the night of August 2nd from my doctors saying that I needed to come in and talk to them first thing Monday morning. Any time you get a call from a doctor on a Saturday night, you know something is wrong. Right then and there, I began to panic. I could tell from the tone of the voice that what was to come was going to be serious and life changing… But did I process the information? Not really. For as you see, this call came to me in the middle of my best friends wedding reception, where I was a bridesmaid. I didn’t want anything to take away from her big day, so once again I put on my brave, fake, smiley face while on the inside I was boiling.

I got to my doctors office early Monday morning. No one would make eye contact with me. None of the nurses and none of the receptionist’s. In the 15 minute wait for the doctor, I’m pretty sure I was offered 5+ snacks as if they were saying “hey, your life is about to get really crappy, but here, have some more fruit snacks.” Finally the doctor sat me down. He began his speech and I swear my brain just shut down. I was there, and I could hear the words he was saying “cancer, stage 2B at least, need more tests, never seen this type before…” I swear I could feel the whole world spinning in circles. Finally I uttered the only 4 words I could “What do we do?” He looked at me, pursed his lips and looked down into his lap and said “Catherine, I have no idea. I’ve never seen this before, and I’ve had 3 other doctors in the state say the same thing. I’m sending your scans and biopsies out and hoping someone else has seen this before.” We both just stared at each other, and I realized that him not knowing what he found was just as scary for me as it was for him. I responded “so, what do we do til then? Just wait?” The answer was basically yes.

At this point I was an emotional mess. Something was wrong with, really wrong with me, but we didn’t know exactly what it was other than it was some type of cancer that no one in my state had ever seen it or treated it. I had planned on telling my family that day, because I had assumed that I’d have at least an idea of a plan. He told me it could take 2-6 weeks before we might know anything more treatment wise. So once again, I was sent back to my “regular” life. Now knowing that I had cancer, a cancer that was incredibly rare, but I still had no real answers. No treatment plan. No time frame. Nothing. So what did I decide to do? I decided I was going to keep it to myself. There was no reason for more people to be worried when I had no answers to any of the questions that they would have.

Eventually, I exploded. I told Justice (my roommate at the time) and he encouraged me to tell my parents at least. Telling my parents was the hardest part of this all. Me hurting because of my situation, I could handle, but seeing the fear on their faces as I described what had been going on with my health for the past month and a half was so hard. But sharing ended up being the thing that saved me. I don’t think I would have been mentally strong enough to go through the next months of “we don’t know yet, we’re doing more research, etc.” without my parents and close friends on my side.

A lot of people ask me now how I feel about my diagnosis. Are my feelings that I had originally still there? To be honest with you, it depends on the day. There are days that still suck really freaking bad. And I probably still say “this isn’t fair” almost daily. But, if I could go back in time, I don’t think I would change what I’m going through right now. Cancer has made me learn so much about myself, but has also changed my perspective on the world. I don’t know if it’s because cancer makes you have to face your mortality and think about it constantly or what, but I enjoy life a lot more than I did before. Things that I didn’t even notice before, and beautiful and amazing to me now. Sunsets, stars, people, trees, nature and so much more all look different to me now. Almost every single day I see something that makes me think “How beautiful is this? Why didn’t I ever notice this before?”

Before cancer, I hated doing things alone. But cancer has made me realize that I won’t ever let a lack of company keep me from doing what I want to do. Whether it be hiking, going to a movie, traveling, or taking myself out to dinner, cancer has taught me that you take every moment that you feel good and you live in those moments. You make the most out of each and every single one of those “good health hours” and you make sure that you’re not just alive and going through the motions, but that you’re actually living.

It amazes me even now how much a simple diagnosis has changed my whole world. I’ve gotten closer to my family and old friends, I’ve made an amazing group of cancer friends who seriously amaze me every single day, and I take each day as an opportunity to experience something new.

So I guess what I’m saying is that yes, what I’m going through is horrible, and it definitely hasn’t been an easy journey to be on and to cope with. But would I change this? Never. My cancer diagnosis was the pressure and heat on my coal self, and I hope as I continue to push through this, that at the end of this journey, I can come out a diamond.

CANCER: MAKING PLANS, LUNCHEON DATES & FRIENDSHIPS

The Many Rants, Raves, and Rambles of Catherine

"Can I do anything to help?" Friendship and chronic illness.

"So I was thinking that next Wednesday we'll meet for lunch, that works for you right?"

All the sudden a rush of thoughts cross my mind... Okay, infusions Thursday, blood work Monday. Okay so Wednesday is free... But I don't even know if I'll feel okay then.

I respond "That SHOULD work. I'll have to let you know the morning of because I have no idea how I'll feel that day."

If you know anything about me, I'm the biggest planner/worrier on the face of the planet. I have my life planned and scheduled to a T. If we're meeting for lunch at 12, best believe that I'm there at 11:45 at the latest, and that's with me planning on being "late." My friends in high school used to plan parties, everyone else would be told 7, I would be told 7:30, and we would all end up there at 7:15.

So when I first started getting sick I would try to push through the exhaustion and the sickness, because I had plans, and plans in my brain were always concrete. You don't bail on people, ever. Especially the morning of the plans. That was not who I am/was.

I started my cancer medication and soon enough I was vomiting all morning every day. There was no humanly possible way to socialize during these times, and so I began having to cancel plans on my friends,.

If you have a friend that's sick and they have to cancel on you, please understand that we HATE cancelling plans. Hate it with all our heart. All we want is to be "normal." I wish that I could commit to an event a week away and be able to to give you a definite RSVP that I can make it. But truth is, I never know what the day may be like for me. Some days, I feel decent (decent is about the best I get these days) and I can get out of my house for 4-5 hours and not be completely exhausted. There's other days where getting out of bed, showering, and making myself something to eat is all I have energy for.

Be patient with us cancer kids please, and anyone with a chronic illness. I understand the frustration and disappointment that comes with having plans cancelled, but I promise that I feel 10x as terrible for not being able to control my health and come through for you. I beat myself up and I feel like a terrible friend. Being sick is incredibly isolating on its own but not being able to make plans a lot of the time is even harder.

A lot of people have asked me how to be a friend during my battle... I know we might not be able to spend a ton of time in person, and I'm sorry. I can't travel much, and if I do, it's typically to see my family and make some memories with them. So what can you do? Texts, facetime, skype, calls are huge. I can't promise that I'll always remember to respond or answer, but the mere action of these gestures means so much. Knowing that someone is reaching out to you and trying to be there for you means a lot. Let me know when you're in town, last minute plans tend to work better for me as I can know how I feel just that moment.

Being sick is hard, and its even harder on friendships. Believe me, we know it's hard. But at this time friendships and supports are critical and can make all the difference in how we make it through this battle. Be there to listen, be there to love, but please be patient. Don't give up on us.

CANCER: BUT...YOU DO NOT LOOK SICK?!!!!!!

BUT...YOU DO NOT LOOK SICK?!!!

I hate wearing my mask out in public... Hate it. I'm claustrophobic, I can feel the heat of my own breath against my skin reminding me of my filter of oxygen. And don't get me wrong, I'm grateful for my mask as it lets me leave the solidarity of my own home without as much risk for germ exposure. But let me tell you something... the claustrophobia is barely noticable compared to the stares.

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