Once More to Baltimore!

Since I have been diagnosed with hereditary cancer (Lynch Syndrome) I have to be tested every 6-8 months for five years and then once a year after that in order to prevent further occurrences. I am about a month overdue for my check up so this week I have been making plans to travel to Baltimore, MD to see my doctors at Johns Hopkins hospital. Oddly, I quite enjoy my trips up there... I'm not sure why but I feel extremely comfortable there. One might think that the place I was treated for cancer would be full of bad memories but it's actually the opposite. My doctors have always been so compassionate and it makes me excited to see them... and I love to show the people that saved my life that I am happy and excited to still be here, even over two years later.

However, this morning when I called my GI doctor to make my appointment I got a bit of a shock... he has moved to Orlando, FL and is no longer practicing at Johns Hopkins. The idea of finding a new doctor there is daunting and honestly, very scary. This man was with me through the worst... he comforted me and I have the utmost confidence in him, I'd trust him with my life. I look forward to seeing his smiling face every 6 months and the idea of not seeing him again feels almost devastating. He has been such a security for me and I'm not sure I can find another doctor that will fill that spot.

I guess that was not an obstacle I was expecting to encounter right now... it's not even something I ever considered happening... I guess I thought that my doctors would always be there because Johns Hopkins is pretty much the hospital of all hospitals. It surprises me he wanted to go somewhere else. And this trip to Baltimore was going to be a little more nerve-racking than normal even without having to see a new doctor. Unfortunately this is a little more than a normal check up, there are a few things that I'm having to get looked at. The first is my ovaries... while I did have colon cancer, I am subject to get all kinds of cancer due to the Lynch Syndrome, including ovarian and uterine cancer. About a year ago doctors found a cyst on one of my ovaries. I had an ultrasound in April that showed one fluid filled cyst and three months later I had another ultrasound that showed 2 more cysts on the same ovary. Lots of people get cysts but the problem is that my doctor isn't really sure that it really is a cyst... she thinks that's what it is but said surgery is the only way to be sure and with my history she thinks I should remove that ovary. That appointment was in August. I'm a little nervous about getting it checked again considering how much changed in just those three months last time... when I get to Baltimore it will have been 5 months since my last appointment so I'm a little scared of what they will find.

Second, is my pancreas. This makes me more nervous than the other. I have been struggling with pancreatitis for the past eight months (all of which started with one really not fun hospital stay) and I'm worried that it will do damage and eventually cause pancreatic cancer, one of my biggest fears. Pancreatic cancer is another cancer that is common with Lynch Syndrome and, from what I understand, is one of the hardest cancers to treat. It scares me because it has a low cure rate and surgery isn't usually a cure. See with colon cancer I just removed my colon and it was gone... with uterine cancer I could remove my uterus and with ovarian cancer I could remove my ovaries... but you can't remove your pancreas. And with everything coming up in my life right now I am nervous about something going wrong and keeping me from reaching my goals again. Sometimes I feel that kind of worry is superficial, but nonetheless it is my worry.

This trip will be different and will hold an unknown ambiance but sometimes change is good. Maybe my new doctor will exceed my every expectation, maybe he will find something that my previous doctor might have missed (though I feel like a traitor even mentioning such a thing). And my hopes are high that all of my tests will be clear. Things could be so much worse, I have to keep remembering that. I am in REMISSION... that in itself should be celebrated. I am not fighting cancer right now. My surgery was successful, I lead a normal life, I have a wonderful husband... nothing is bad, in fact everything is really great. Yet this subtle fear arises right on cue every time Baltimore approaches. I just have to remind myself how much God has blessed me and how He will not give me more than I can handle. I can rely on him to take care of me. That is comforting each time I think of it. I even feel better now than when I began this entry... but I guess that is what writing is for :)

Enough is enough: Unless you've had cancer

When I attended a First Descents camp there was one emotion I had been dealing with that I never would have attributed to cancer. In fact, I would have pointed out the cause to be anything BUT cancer. Therefore I was surprised to hear the other survivors at camp professing their struggle with this same thing. And it hit me like a ton of bricks that cancer had bred this emotion inside of me.

It was fear. But not fear of dying, or hurting, or losing something. It was fear of reaching my last breath and feeling like I had not done enough with my life. It took that experience at First Descents to show me that the reason I had this fear was not because I had had cancer, but because I had survived cancer. No one prepares a cancer patient for the feelings that come with survival. It completely took me by surprise. Why wasn't everything back to normal? Why wasn't I moving on? Why was I different?

But I was different. I had survived something that I never expected to experience. I had a new strength, a new peace, a new faith. And in my core I believed that I had survived for a reason... God wasn't finished with me yet. Believing that created a fear in me that I wouldn't live up to what I was here for. That I would fall short of my purpose. I was afraid of missing the mark.

But without realizing the emotions that were running through me I began to pursue more things than I could possible handle. I was confused about my direction. Shortly after recovering from surgery I moved to Huntsville, AL and literally did nothing for 6 months, just thinking and evaluating my life and pursuing an inner happiness. It didn't work. So I moved back home to Mobile and got a full time job so that I could support myself and gain happiness through independence. I stayed at that job for a year and a half. It didn't work. I still wanted more. So I applied to grad school to study forensic anthropology, something that I had wanted to do before I was diagnosed. Half way into my applications I realized it wasn't my passion anymore. I was different.

And then, like every good thing does, it slapped me in the face. My passion had changed. My desires were different. And my goals needed to change too. God had a different purpose for me than I thought and my constant pursuit of what I wanted had blinded me to seeing it. I am not supposed to have a mediocre job. I am not supposed to be an anthropology, I am not supposed to teach the Bible. I am supposed to go into the cancer field. And that is something I never would have considered had I not had cancer. I'm not sure what I will end up doing yet, but I hope that I will have the opportunity to complete graduate work in molecular biology so that I can conduct research in cancer genetics. But if that doesn't happen then I see myself ending up working full time in the awareness community. This is what I am meant to do.

I had my moments where I felt enough was never enough. Sometimes I still do. But at the end of the day my life will be exactly what God wants it to be if I have faith in Him enough to let Him lead me. Cancer, no cancer, death, survival, my life is His life. My heart will rest on that.

Flashbacks and Prayers

One of my friends is having surgery tomorrow due to a cancer reccurrence. She found two lumps in her breast while on chemotherapy so they made the decision to perform a mastectomy. She is only in her early twenties. It's those stories, those moments, that make me ask why? Why do these things happen? And to great people? I feel for her... in a deep way that I can't even explain. I both fortunately and unfortunately have the gift of empathy... I almost feel like it is happening to me, like I'm there. But at the same time I know that I have no idea what she is going through.

So tonight I have been really pensive, just thinking about how she's doing and how she must be feeling. I have moments of flashback, remembering the days before my surgery and how intense they were and how lost I felt. I hope she doesn't feel that way. Mine happened all so fast, just like hers, and I remember feeling like I was in a whirlwind, in a dream. Nothing felt real... it took months for reality to actually set in. She is going to have a hard road ahead and I hate it for her. I wish I could take it all away. Is that weird to think? It sounds almost mothering but I don't mean it that way. Just as a friend I don't want her to have to go through that. And I know how it feels to have cancer make you lose something, make you feel like you lost your womanhood, and I would hate it if she felt that way... it sucks. She's gorgeous and doesn't deserve to go through that. But she will be just as gorgeous after her surgery... and her spirit I know will change people. I know she has inspired me.

So today, offer up prayers for Sarah. I pray that her surgery is successful and she has no further reccurence. Also that her recovery is quick and as painless as possible. I also pray that her spirit stays strong and she finds peace in her Lord as she pushes through the hard moments she might encounter once she wakes up. I pray that she feels empowered and not defeated. Amen.

Strokes of Confidence and Pain

I saw an entry on First Descent's blog about an art competition for cancer patients, their families, and oncologists. It's called "Oncology on Canvas". This immediately drew me in. While it has been years since I have actively painted, I did start oil painting when I was nine. Growing up, art was where I found my solace, and I have been eager to create a piece that I could really relate to post-cancer. The competition states that the "judges will seek artwork that best portrays inspiring cancer journeys". I have been contemplating this for hours now. How? How am I ever to accurately express through paint and brush strokes what I felt while battling cancer? I scan the past entries hoping that they will provide me with inspiration but I find nothing. Not that their paintings aren't inspiring, but I still walk away perplexed. There are many paintings of women with mastectomies that show true pain and joy together... but the idea of using my body of scars for my entry just didn't appeal to me. For me, my scars are the symbol of victory, quiet reminders that my doctors cut every cancer cell out of my body, but they are not my journey. My journey consists of the many conversations I had with my family and friends, the moments that I found myself having open conversations with God about death, and each night that I fell asleep to another old movie with Cary Grant or Gene Kelly in it. But how can that be put on paper?

In an effort to discover how to create strokes of both confidence and pain, I'd like to share some things that shaped my journey. There is a theme in all of my comforts that I later realized... maybe you will notice it.

As I just mentioned, I watched many old movies in that hospital room, but there was one that I could watch over and over again. "Singin' in the Rain" became my movie of choice. I'm not real sure why, but I found it comforting. Even the title seemed to speak to me... maybe because that's what I felt like I was doing... singing in the rain.

Before my surgery, every day when we would get in the car to drive to the hospital a certain song would come on the radio. It never failed, every time we cranked the car this song would be playing. Then, while I was in the hospital, my mom would always hear it on her way to see me and she'd tell me about it when she arrived. It was called "Praise You in This Storm" by Casting Crowns. Here are the lyrics... they were so powerful to me while I was sick:

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

That was my song for all of the hard times. The moments that I felt like even tears couldn't express the pain. But my journey was not all pain, and there is actually a song I have begun to turn to when I want to express joy and a desire for life. It's called "Something Beautiful" by Needtobreathe. The lyrics alone do not do justice to the song, so I suggest listening to it rather than just reading it, but enjoy the lyrics anyway :)

In your ocean, I'm ankle deep
I feel the waves crashin' on my feet
It's like I know where I need to be
But I can't figure out, yeah I can't figure out

Just how much air I will need to breathe
When your tide rushes over me
There's only one way to figure out
Will you let me drown, will you let me drown?

Hey now, this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
'Cause I am down on my knees.
I'm waiting for something beautiful
Oh, something beautiful

And the water is rising quick
And for years I was scared of it
We can't be sure when it will subside
So I won't leave your side, no I can't leave your side.

Hey now, this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
'Cause I am down on my knees.
I'm waiting for something beautiful
Oh, something beautiful

In a daydream, I couldn't live like this.
I wouldn't stop until I found something beautiful.
When I wake up, I know I will have
No, I still won't have what I need.
Something Beautiful

Hey now this is my desire
Consume me like a fire, 'cause I just want something beautiful
To touch me, I know that I'm in reach
Cause I am down on my knees
I'm waiting for something beautiful
Oh, something beautiful

If you haven't noticed by now what the theme is I need to just tell you. Rain, storms, ocean, waves, tide, tears... water has become a place of solace for me. The week before my diagnosis I was rafting on a river. Exactly a year later I was back on that same river. And a year after that I was kayaking the Colorado with First Descents. This might seem silly and trivial but it's not to me. Since I was a little kid I have felt a very odd "connection" to water. I could sit and stare at waterfalls for hours. When I was 4 I even named my first puppy "Ripples" after the ripples I had seen in water. I wanted to be a marine biologist for the majority of my young life simply so I could be around water every day. I when my communications class my senior year of high school was told to write a speech comparing ourselves to an inanimate object, I compared myself to a river. And every time I went camping or to the beach I would always go sit by the water and just... meditate (for lack of a better word). I'm not sure why, but there has always been something about being near water that comforted me and gave me strength. Crazy isn't it? I can't explain it, and I'm well aware of how ridiculous it sounds. But none-the-less, it's true. Every time I am near water I just feel Go's presence more. I feel his power more.

Maybe that should be the theme of my art work. I am unsure how to incorporate it, but I probably should find a way. So I'll end this blog with what my husband says to me when I say I love water. David: "I love water. I love clouds. I love mountains. I love trees. I love the animals in the trees. I love the fleas on the animals in the trees. I love the amoebas on the fleas on the animals in the trees on the mountains by the water under the clouds."

Celebrities with Colon Cancer

The other day I was listening to various stories about celebrities with breast cancer, lung cancer, etc and it got me to thinking... I wonder how many famous people have had colon cancer? So I started looking it up and several of the people surprised me.

The most shocking to me was Audrey Hepburn. AUDREY HEPBURN! Considered one of the most classy actresses to ever live died of one of the most shunned cancers. Who would have thought?

Elizabeth Montgomery, best known for her role as Samantha on the hit TV show "Bewitched", also died of colon cancer. She actually battled it twice before it took her life when she was in her 60s.

Jack Lemmon, actor, died of colon and bladder cancer in his 70s.

Walter Matthau, actor, had metastatic colon cancer but died of heart disease.

Vince Lombardi, coach of the Green Bay Packers, died of colon cancer.

Ronald Reagan, the President I was named after, fought colon cancer and eventually recovered.

Sharon Osbourne was diagnosed with colon cancer in her late 40s and recovered. She is still cancer free today.

And most recently, Farrah Fawcett died of colon cancer. Her fight was chronicled in a documentary.

With all of these celebrities having suffered from colon cancer, why is there not more awareness being raised? Is it because most of them didn't make it? It seems Sharon Osbourne is the only one still alive. But even the people who did not win their battle, they have families... couldn't someone stand up and fight for this? Breast cancer has a voice with tons of celebrities including Christina Applegate, even testicular cancer has a voice with Lance Armstrong... colon cancer is the second leading cause of cancer deaths... it needs a voice too!

I really hope that someone that is in the position to stand up and raise awareness for this cause will. The public (and physicians) needs to know that colon cancer is not just for people over 50... anyone can get it.

Ok, end rant.

Hormone Therapy and Cancer

http://www.webmd.com/ovarian-cancer/news/20101108/hormone-therapy-linked-ovarian-cancer

Just a quick blurb on the effect hormone therapy can have on our cancer risk. In short, it GREATLY increases our risk for ovarian cancer!

And just an FYI... as much as it sucks, birth control IS a form of hormone therapy.

Read the article for more.

Flashback!

Thought I'd post some treatment pics so everyone can see what part of my journey looked like!

Right after surgery.In intensive care, first time sitting up.
Intensive care with my awesome nurse!

My best friend Eunice brushing my REALLY knotted hair.

Don, my archaeology buddy, drove up to see me in the hospital.

Me and my mommy... she took good care of me.

In good spirits!

Getting my pick line out... hurt more than I expected haha.

Me and my sis-in-law... she flew in to help take care of me!

Me and my surgeon Dr. Pawlik at my check up in May 2010. He was amazing!

A Short Thought on Kayaking

Over this past summer I attended a First Descents kayaking camp in Vail, Colorado and it was possibly the best experience I have ever had. Even though that trip was two months ago (I can't believe it has been that long!) I still think about it daily. Today has been one of those days where it has been on my mind constantly and for some reason I had an "ah-ha!" moment about something that has been bugging me so much.

I haven't been able to get one question off my mind since I applied for the FD camp... why does kayaking, of all sports, seem to heal us and empower us the most, especially after cancer? I have thought about it and thought about it and I have come up with several semi-satisfactory answers but nothing really seemed to hit the nail on the head. Then today it hit me like a brick... and I was surprised by the answer that I found. When cancer strikes it takes our sense of adventure away from us. We are bound to beds and hospitals, prisoners of i.v.s and medications, and we lose our sense of life... at least for a short while. I think everyone is effected very differently in this matter... in my situation I was bed bound for roughly four months and then had several months of recovery after that, making it impossible for me to do any physical activity for over half a year. To some that might not be a big deal, but it just about killed me. Some people might never lose their energy and some might lose it for years. Everyone is different. But I think regardless of how physically weak cancer makes you a sense of adventure is still lost. You wonder how long you have left to take part in these adventures, how long you have to see the things you want to see and do the things you want to do.

Kayaking embodies all that we miss out on or fear we will never get to experience. Sky diving is adventurous but it takes little physical strength and it is over in a few minutes. Same with bungee jumping, base jumping, etc. Snowboarding and skiing are fun and exciting but they take a considerable amount of skill and practice to really be able to enjoy and not everyone ends up being good at it (I for one am terrible). This is where kayaking is different. It takes enough skill to make you proud of being able to accomplish it but it doesn't take too much skill to where you have to practice for weeks or more to enjoy it. Kayaking also gives you that sense of risk every time you approach a rapid or hit that wave, and when you make it you can't help but get excited. Kayaking also allows you to see things you might otherwise never see. It combines the rush of sky diving, the views of hiking, the fun of snowboarding, and the self satisfaction of competing because even though it's not a race you have exceeded your own goals. Kayaking makes you feel alive in a way that no other activity really does. At least this has been my experience.

So thank you First Descents for giving me a week where I felt more alive than I have in my entire life. There is so much more to say about this camp but in short, the people I met and the things I experienced made me want to chase after that feeling of wholeness that I found there for the rest of my life. I will never again feel like I can't be complete or that I can't thrive in life. That week proved to me that I can.

When Death Crosses Your Mind

Death is something I think about on a regular basis. Not to be depressing, but it's a reality. But death is rarely something I talk about. Probably because the only people who would be able to understand are those who have been there themselves, and I know very few people who have been in similar shoes as me. But here, well, I'm sure most people that read this have been in the cancer battle at one time or another so I feel more comfortable sharing in this place. And sometimes death is just something I need to talk about. Can anyone relate?

I never actually felt like my cancer diagnosis was a death sentence but I definitely had my moments where I thought I might be seeing the Lord sooner than I expected. I remember the first time I thought about dying after I heard my diagnosis... it was about three days later. I woke up one morning and found myself just praising God that he allowed me to wake up one more day. It hit me that morning that my colon could rupture any day and I'd be gone. For almost two weeks I went to bed every night praying to be able to wake up... then when I woke up I prayed that I'd be able to go to bed that night. I wasn't fearful, but I knew death was a serious possibility, and I just wasn't ready.

This is just a short note to say that it's ok to think about death, I would venture to say all cancer patients do, but try to not let it run your thoughts. That is still something I have to remind myself of. When death crosses my mind I will let myself think on it briefly, but then I try to focus on feeling alive instead :)

Alkalize or Die

When I got diagnosed with colon cancer I immediately called a highly regarded naturopathic doctor in my area to ask him how I could change my diet to fight the cancer. I was still planning on doing surgery but I had made the decision to not do chemo or radiation unless my situation was marked as terminal. Not that I have anything against those treatments, in fact chemo saved my husband's life when he had childhood cancer, but I didn't feel it was right for me (and my oncologist actually agreed... man was I surprised!). So I wanted to learn some different ways that I could fight the cancer off naturally. This doctor recommended one book..."Alkalize or Die" by Theodore Baroody. When I saw that the book was actually published in the early 90s I was taken aback... surely there had to be a more recent book? Something cutting edge? But now I can say that after reading numerous cancer-diet-plan type books this book is surely the best.

To get a detailed overview of the alkaline diet read over this website: http://www.alkalizeforhealth.net/

But the gist of it is focusing on our ph levels. You see, our bodies have a ph level, kind of like a pool does, and that ph level can tell us how healthy our bodies are. You're either on the alkaline end of the spectrum or on the acidic end. The majority of people today (almost all actually) would be classified as acidic, and when your body is acidic cancer grows rapidly. The theory with this diet is that if you are able to change your ph level to the alkaline end then cancer will be incapable of growing, and if you have cancer it will eventually die (I say theory here because I have not truly tested it on myself, though after studying it I have to say I'm inclined to agree that it sounds like it would work, even though I know it sounds a little cooky).

I was sick for over 4 years prior to being diagnosed (I went through years of misdiagnosis) and there was only one time in those fours years that I felt healthy. That same naturopathic doctor that recommended the book to me put me on an alkaline diet about a year before I was diagnosed with cancer. I thought I might have something called Leaky Gut Syndrome since I always felt worse when I ate (at the time I didn't think I could have cancer because I had been tested and the tests came back negative). Two weeks after being put on this diet I saw a drastic difference. At this point I had been having intestinal bleeding for several years on a daily basis but two weeks after being put on this diet it stopped. I went a month with no bleeding and had I been more disciplined in that diet I think it might have cured my cancer, but it was very hard to stick to.

That, I have found, is the most difficult part of treating cancer naturally. It is so important to be vigilant and stick to it. I was a college student at the time and just had a really hard time saying no to going out to dinner with my friends. That is the one regret I have, not sticking to that diet... I think my treatment would have gone more smoothly and who knows, I might not even have had to have surgery! But I can't say that for sure.

I wanted to post this because I truly believe that there are so many options out there for cancer patients that doctors don't make us aware of. Even my best doctors had no suggestions for me as far as diet after surgery... even my dietitian at the hospital told me to eat whatever I wanted as long as I felt ok! Cancer has been proven in most cases to be largely diet related... what we are exposed to can greatly effect our health (this could include food, hazardous chemicals, or even things such as laundry detergent and cleaning products). Therefore it seems only rational to think that exposing ourselves to healthy things could prevent cancer and possibly cure it. Just a thought.

"Live Life Urgently"

This blog is something that has been a long time coming in my life. I have been studying and learning and trying my best to acquire some type of information that might be helpful to someone else out there in my situation. I finally decided to create this blog when I realized that there is no magic healing information and I will never know enough to feel useful. I had to come to the understanding that the point of a blog is to share what you know, even if it isn't a lot, in the context of what you've gone through. Sometimes experiences help even more than book knowledge can, and experiences are something I have a lot of.

So for my first entry, the knowledge I'd like to pass along is something I learned back in 2006 but never really fully understood until I was diagnosed with cancer in 2008. Shortly after Steve Irwin's death in 2006 I saw an interview with his wife Terri and she said something about him that stuck with me. She said that he always lived his life urgently... if someone came up with an idea, or someone wanted to go do something, he wanted to do it immediately... there was no waiting with him. He lived urgently. She said he did this because he always knew that at any moment his life could be taken from him and he never wanted any regrets. As quirky as he might have been, it was evident that he lived his life exactly like that... urgently and with no regrets.

When I found out I had cancer that interview was constantly on my mind. I didn't know how long I had and I wanted to live the rest of my life with no regrets. I wanted to take advantage of every opportunity presented to me as well as focus on what was truly important to me (this will be a later entry because the things you think are important drastically change when you get cancer... a lot to say about that). I wanted to live my life urgently.

That was easier said than done, I found out. There are too many bills to think about (especially after cancer) and jobs and school... the things that matter easily get pushed aside. But I have tried, and am still trying, to live my life to the fullest the way Steve Irwin did. This blog is another baby step for me. Cancer awareness is something I'm passionate about and desperately want to be involved in, so this is my way of doing just that. I hope that here you will find a few answers, even if not many, but most importantly I hope you will find comfort. You are not alone and through cancer you might be surprised to discover how many new friends you will make. Good luck with your own journey, and I hope you enjoy reading about mine.