lucky

When I started writing about cancer, it was a way to document what I was going through; to purge it from my system, but to not really share myself or my experience.


I realize now how selfish that was. 


Recently, I visited the periodontist to have my first of five gum grafts (thanks, radiation). While I was getting "numbed up", the dental assistant started chatting about oral cancer. All dental professionals love to chat about my freakish case. ALL. She mentioned that they work with eleven other patients who have had oral cancer, but I was only one of two under 35.  The other girl, she said, was much worse than I was. Her cancer had progressed to Stage Three and she had lost most of her tongue. She couldn't speak or eat anything solid. She had undergone radiation and chemotherapy, in addition to her surgery to remove the cancer and lymph nodes.


And for the first time, I felt lucky.


I could have so easily been that girl. If my grandmother hadn't had it, if my mom hadn't pressured me to visit a specialist, if I hadn't been obsessive about dental health...I could have been that girl. Forced silent by cancer.


And then I felt guilty.


I felt horrible for every time I whined about my scar and gum grafting. For every time I complained about my speech. For my screams through the scar removal, for voicing my fears about my follow up and the cancer returning. And most of all, for my own silence.


In the scope of my world, very few people know about my experience with cancer: my family, a few close friends and my co-workers and even letting those people know was hard for me. I never wanted to be labelled the as the "cancer girl". I wanted to push it away and be done with it. But what if by saying something, I could have stopped this from happening to this woman? What if she had heard about oral cancer? Maybe she could have been "lucky" too.


After realizing all of this, I'm not sure where to go with it. But I feel like this is a good start.

another year

At least once a year, I feel the overwhelming need to start a blog. I fantasize that my thoughts and dreams are so profound that I should share it with the world (or at least make it available through the Internet).

Today is that day.

However, instead of starting a new one, I decided to follow up on the old one.

To start, my life has changed a bit since I posted last.

Firstly, I am cancer free! Those are words that a year and a half ago, I'd never get the opportunity to say. The fear of it coming back is still there, lurking, but I don't think that will ever go away. So, for now, I'm content to just be cancer free.

Secondly, I am no longer at my first job! When, I finished treatment, I was still so weak and shaky. The company I was with was unable to modify my job enough to allow me to recover. I'd like to say that there are no hard feelings, but there are.

However, God worked it out! I am now working for an amazing company, the Center for Student Missions! CSM is my first love, work wise. I interned with CSM in the summer of 2006 and fell in love with it. CSM is literally empowering people and changing lives (at least in my very biased view). Being a part of it again is literally a dream come true.

Which brings me to my third change. I am now living in California! I moved to take the job with CSM and I have found that I really love California! I didn't expect to, but I do.

Overall, the rebound from cancer has exceeded my dreams!

life

My life has changed. Profoundly and irreversibly. And the crazy part is, I don't think I would go back.

Recently, I've had some time to contemplate my life and my person. Something I realized, which everyone already knows, is that life is short. Extremely short. I never understood people who said that. I thought before that it was a way of stating the obvious. A cliche. Something to say when making an impulsive, careless decision.

It's not.

We have limited time to make a legacy. Trying to decide what you want you life to stand for is one of the most impossible things to do and any time trying to decide what you want your life to be seems time wasted. Any tme not spent living life seems time wasted. But you must.

I woke up six weeks ago and realized that I was unhappy. I had successfully completed treatment for cancer and I was preparing to....what? To go back to my life. A life that I was bored with before? A life that I was unhappy living. Over the course of my life, I had created a neatly structured plan of how my life was going to go. Cancer was no where on that plan and although one of the most difficult things I had ever dealt with, it also may be one of the best. I realized that the detailed plan no longer fit. I'm no longer the girl who wanted that plan. I'm no longer the girl who only wanted financial security and was willing to forfeit adventure, love, joy, my well-being for it. I was willing to leave a life that I considered boring, just because it matched up with a plan I created when I was six.

Now I have a new plan. Find what makes me happy. I've spent so many years pushing my happiness aside, I don't know where to begn to look. But I will find it. I will not waste my second chance.

My legacy will be joy, love and hope.

new attitude

Throughout this whole "process", people have told me I have a great attitude or that I'm handling things amazingly well. Today, I thought about why that was. Why was I handling having cancer better than others? Was it just me or was it something else? I started thinking back to when I first found out I had cancer...

I was upset. Devastated. My whole neatly constructed world was crumbling down around me. I watched as all of my hope, dreams and desires were placed on shaky ground. I spent a day,just talking about how my life was ruined. How no man would ever love me, even if I survived this. Who would want someone who would be living in fear of recurrence? Who would be scarred and scared for life? Who would want someone that would be passing on genetics that have "23=cancer" written all over them? I screamed about how I was now stuck here for the rest of my life. How I could never move or accomplish my dreams. How I would never be able to change the world. I took my self down to the deepest, darkest depth I knew.

And the I pushed off of that bottom and started to push myself as hard as I could for the top. I made a decision. I knew that I could either let this ruin my life or create something beautiful. I started to look at having cancer in a new light. Maybe it was an opportunity. Maybe this is my chance to change the world. Or maybe it would just change me for the better.

Looking back, I realize that that attitude change has really affected my entire treatment. I handled the pain better (and with very limited whining) than the old me ever would have. So when I say that I hurt or something doesn't feel right, everyone listens and is immediately concerned. Everyone around me is much more happy and hopeful than my first few days, too. I feel like I make a good atmosphere around me. I'm happy. (And I'm trying to scare the hell out of that cancer so that it never comes back!)

I still have really bad days. Everyone does. But on the days that I feel like asking "why me?", I ask myself "who instead?". Who would I want to take on this cancer and this pain on in my place? I can't think of anyone that I would wish this on.

pain

I really thought that the surgery was going to be the hard part of cancer treatment.

I was wrong.

Generally, I'm a pretty non-whiny person, I think. But radiation has brought out the whiner in me. It hurts, bad. At least with the surgery, when I was in pain, I could take some drugs and the pain would go away. Now, with radiation it just eases the pain. It's always there though. Lurking, waiting for the medication to wear off and come back full force.

It sucks.

And I can't really speak. It hurts too much. I have what feel like blisters all over the inside of my lower lip and on the tip of my tongue. It hurts to swallow too. Just moving my tongue the little bit necessary to swallow causes pain. I'm trapped inside my head.

I really don't know how people go through this without a support system. Even with my friends and family backing me its tough. But I know I can't give up and beg my doctor to stop because it could come back then and that would hurt them.

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually the pain will subside and something else will take its place. If I quit, however, it lasts forever". - Lance Armstrong

waiting

What I'm currently waiting for:

1. My radiation to end

2. To be declared cancer free

3. Taking a celebratory trip to the beach (alone)

4. Feeling free to do what I want

5. Being able to smile and talk normally

6. The time when I won't need to write or talk about this disease because I will be done with it

evaluation

It's been one month since I had my partial glossectomy and neck dissection and this caused me to take stock of the changes in my life since that point. Creating this list revealed a lot of positive changes and revelations that were unexpected. Here they are:

Change #1: My attitude. I've always tended to be dramatic and easily agitated. If something did not go according to my plan, everything was ruined. After a small fender bender today, I realized that the words "stressed", "dramatic" and "angry" don't coincide with my personality anymore. I may have temporarily lost some of the adjectives that I love about myself (e.g. "hopeful" and "happy"), but this experience has mellowed me - something that I have always wanted.



Change #2: Parental relationships. My mom and I have always been exceptionally close; nothing has change there. However, my relationship with my father has undergone a slight transformation. All of the old animosity I felt towards my dad has suddenly floated away. This was something that I always wrestled with. Now though, that old anger is gone and I feel like I can finally move on.



Revelation #1: I have amazing friends, past and present. And I am completely undeserving of them. Throughout my entire life, I've been blessed with wonderful friends, even though I am a horribly bad one. When all of this started, my friends came out in full force, offering me prayer, support, laughs and visits. My friends, some of whom I had not spoken to in years, have all been there for me. I can't say enough good things about my church friends, my CSM girls and my work crew. They all kept me sane.



Revelation #2: I'm finally becoming the person I always wanted to be. I've always wanted to be a person that took everything in stride, that took risks, that somewhat went against the grain of normalcy. I wanted to be a little more free spirited. Finally, I am.

Although good things have come out of this, I wish they had all come about another way.

new year

The new year is swiftly approaching and I'm feeling strangely optimistic. Weird for someone who is getting radiation daily. But I do. I feel like my family has been through so much in the past few years, that good things are coming our way. My way.

I've always felt like something bad was going to happen to me at some point in my life. This statement makes it sound like I live my life under a dark cloud, but that's not the case. It was just always something in the back of my mind or in my peripheral vision, waiting. Maybe this is it. Maybe this is what was lurking there. After this maybe I will be able to live my life with some freedom from it because I know now that I'm a fighter.

I feel like the bad will come to an end soon. I feel like the things that I've wanted for so long, that I've prayed for and wished for, are right around the corner.

I'm still scared. Terrified. Especially when I read other people's stories. Maybe it's just the people who have to deal with the most and who have the worst prognosis that share on the Internet, but the horror stories are what keep me up at night. It reminds me all over again that I'm breakable. That my life won't last forever; but I'm planning on a solid 70 more years!

Happy New Year!

neck update

Here is a picture of what my neck looks like now, after the steri strips have been remove:

The neck dissection was only four weeks ago. Not so pretty, but improving, right?

Matthew 10: 29 - 31

Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don't be afraid; you are worth more than many sparrows.

Selective Neck Dissection

As promised, here are some picture of my selective neck dissection.

This picture was taken on December 2, 2009, mere minutes before my surgery:

And this picture was taken today (December 21, 2009):

Even though its less than three weeks from the surgery, I'm pretty happy with how it's looking (minus gross steri strips, which refuse to fall off, and dry skin). The ultimate test will be tomorrow. I see the surgical oncologist tomorrow and I have a feeling that the steri strips and sutures will be gone. So we'll see...

Also, I start a new-not-so-fun adventure on December 29th...Radiation. Six weeks of it. There's so much more to worry about with radiation than surgery. Tooth health, saliva production, swelling, redness, sores...the list goes on and on. But I'm ready to go and get it over with. The sooner I get to take my life off 'Pause', the better!

words

It's funny how quickly the meaning of words can change for you. How something so inconsequential can suddenly provoke such a strong response.

For example, twenty three has changed for my family. Twenty three now means "too young" in my family, it means a time of pain and a time of fear. Twenty three is no longer just my age; it's my dark time. It's the time when I had to think about my life being over.Twenty three used to make my mom smile. It always made her laugh that I was paranoid that twenty three was old. Now, it only makes her cry.

Cancer has already changed so much about my life. How I look and how I sound. And especially how I think. I wonder how much else will change...

update

It's been 12 days since my selective neck dissection and partial glossectomy and the healing process is going...well. My tongue is healing so quickly that my speech is already almost back to normal. It's amazing how resilient the tongue is! My neck is taking a little bit longer; pictures will be up soon!

I did get some unpleasant news on Wednesday. My surgical oncologist informed me that although my lymph nodes were cancer free, the cancer had begun to move the nerves. Because of the movement to the nerves, the surgical oncologist recommended that the meet with a radiation oncologist. My appointment is tomorrow.

I'm really nervous about it. I'm pretty sure that I know what the radiation oncologist will say; that I need radiation therapy. It means that my road to recovery is just beginning. It means my life will remain on 'Pause' for that much longer. It means that it will be a long time before I'm normal again, before I'm myself again.

But I wonder if I'll ever feel like me again after this. Before this, I was hopeful and happy. I was so sure that I would always achieve everything I wanted to. Now, I'm not sure. I'm not sure if I will ever feel that carefree and joyful again. Over the course of these past weeks, I feel like I've grown up so much. But in that process of that, I think I've gained some sadness. I just want to feel like me again.

the beginning

I have cancer.


Specifically, squamous cell carcinomas in the tongue. It falls into the oral cavity/oropharyngeal cancer group.

Here are some fun tidbits about oral cavity and oropharyngeal cancers (thanks to the American Cancer Society):

• There are approximately 28,500 new cases in the US every year
• An estimated 6,100 people die from these cancers
• The average age of most people diagnosed with these cancers is 62
• About 1/3 of these cancers occur in people younger than 55
• These cancers are more than twice as common in men as in women
• About 8 out of 10 people with oral cavity and oropharyngeal cancers use tobacco
• About 7 out of 10 patients with oral cancer are heavy drinkers
• HPV (Human papilloma virus) has been linked to oral and oropharyngeal cancers

Here are some fun facts about me:

• I'm 23
• I'm a female
• I've never used tobacco
• I've never drank
• I have had the HPV vaccine

Basically, I'm a rarity in the tongue cancer world. What makes me especially rare is my lineage. My grandmother is a tongue cancer survivor. She finished up her treatment in August...of this year. If it weren't for my grandmother and my other family members (I lost 3 grandparents to cancer and my father is undergoing treatment for esophageal cancer), I may have been much worse off. I went to an Ear, Nose and Throat specialist when I developed a small lesion on my tongue, simply out of paranoia. The doctor biopsied the area because of the family history; she basically said she wanted to rule it out and ease my fears. Without my family,I probably would have ignored it for a long time.

Oral cavity and oropharyngeal cancers are often found not found until Stage T4. One of my goals for this blog is to raise awareness. In Stage T1 (my stage), survival rates are much higher.

Another purpose of this blog is to chronicle my journey to getting my life back. I feel like my life is currently on 'Pause'. I can't move forward until I'm through this.

Finally, my last (and the original!) goal of this blog is to post some pictures. When I met with my surgical oncologist to discuss treatments, he recommended removing the tumor and a neck dissection to remove lymph nodes, to verify that the cancer has not spread. He said that the scar left by the selective neck dissection will be the only lasting mark of my cancer. However, I am 23 and I am slightly vain. The idea of waking up every morning to the reminder of my cancer and having to explain it terrifies me. Since my grandmother was the only person I knew who had undergone this procedure and has wrinkles to cover her scar, I did what every 23 year old in my position would do. I googled.

HUGE MISTAKE!

The images that come up for "selective neck dissection" are horrible! They sent me on a crying jag for a full day and lead to much darker thoughts of me spending my life alone, except for 13 cats. I want someone else going through this to know what to expect. So, I'm starting now, with less than three days till my surgery.