Living in the Cancer Community

I discovered the young adult cancer community about 2 years after my diagnosis. Still not sure what took me so long considering I was looking for some type of support group for the entirety of those 2 years, but I suppose it came at the right time for me. And when it came, wow, the support poured in. 

I found First Descents first, and I still find it funny how I came across their website. My google search was very deliberate... I Googled "cancer and whitewater kayaking" and FD immediately popped up. I was shocked and totally thrilled to find a way to learn to whitewater kayak for FREE! I think it's funny that I came for the kayaking and stayed for the people. As you can see in the pic, we had a ton of fun at that first camp in Colorado back in 2010 (I'm on the far right). At that camp I also learned about Imerman Angels and as soon as I got home I signed up to be a mentor.

The next year came FD2 in Montana. The main difference in that camp and the first, to me anyway, was that I became closer with people. That mostly happened because unlike the first camp, I wasn't as busy trying to work on myself. I had sorted through a lot of my cancer-stemming emotions and I believe I became a more "whole" person again. Except for the organs I was (am) still missing of course. Johnny (seen with me below) and Clicks were probably the two people I connected with most on that trip. They have both become really great friends.

Then this past summer I was fortunate enough to attend an FDX trip in Idaho. This trip was extremely different that the previous years. Cancer was hardly mentioned and the level of difficulty was much much higher. While I love kayaking, it is probably safe to say that I about hit my difficulty level on that trip. But again, friendships were formed and strengthened and I would say even transformed to that of family.

I was also fortunate enough to be able to participate in the Colondar, the annual Colon Club calendar that has survivors show their scars to raise awareness. I spent a whole weekend on Lake George in New York just hanging out with other colon cancer survivors and it was such a blast... it was my first time to meet another young person with colon cancer and it really meant alot.

(December 2012)

I've also been to Lynch Syndrome workshops with Lynch Syndrome International and Myriad Genetics where I met other families with Lynch Syndrome for the first time. I've even been able to speak at some seminars and share my story which has been so healing and empowering. Then there are the numerous groups and communities on Facebook... it's endless.

All of that to say that the cancer community has been invaluable to me and I would never change that experience for anything. I saw the undying support as everyone at our FDX camp unanimously tried to think of the best way possible to pay tribute to Johnny who at the last minute couldn't make the trip due to chemo treatments and a death in the family... this is what everyone came up with:

(This was the last day... we through the rocks into the rapids before we left the river.)

Now for the "but"... and this "but" is simply a question. Here lately I have been wondering how much is healthy and at what point does involvement in this community begin to have a negative effect? I would never ever walk away from the friends I have made there, but I have been wondering if there should come a time when involvement in the groups should be scaled back. After having cancer I think we are all left with a sense of fear and worry, sometimes even anxiety, about the future and annual scans, etc. Now, being involved in community can absolutely help with that... being able to talk it out and express yourself. But as of late I have noticed that my anxiety has increased some and I notice it heightening when I see stories of new diagnosis, people passing away (not people I even know), and treatments not working. I think it is different when you are listening to a friend tell you about their cancer struggles, but when you see comments in mass online from unknown people ALL the time, mostly sad gut-wrenching stories, it can become hard I think to process it all. 

I would love some feedback on this... until then, I will reminisce about my "out living it" experiences :) 

Life is People

I am continuously surprised, day in and day out, by people both good and bad. There are times I am aghast that someone can be so shallow and self-centered in their life, completely oblivious to the hardship others are enduring around them, but thankfully those moments are not as prevalent as they used to be. Maybe it is because of the people I am surrounded with now, such tremendously amazing people who genuinely care for others... people who get what life is really about. I can not help but sit here in tears when I see someone helping someone else or fighting through something like cancer. I am not normally a crying kind of person but I have no problem admitting that I cry and cry and cry when something touches my heart. I think I have the ability to empathize almost to a fault... I feel the struggles of my friends to my core, in a way that can actually affect my ability to function to my fullest. But I would never want to change that... I would be devastated if I ever became desensitized to someone's pain.

One thing that I must admit I love about Facebook is that I can share in my friends' intimate life moments, both good and bad. Tonight, partly due to Facebook posts, I have a heavy heart and a joyful heart all at once.

There is a page on Facebook called "Prayers for Lane Goodwin" which is dedicated to raising awareness for childhood cancer and ask for prayers for Lane, a 13 yr old who is battling stage IV Aveolar Rhabdomyosarcoma. I have been following Lane's story for awhile as have over 250,000 people and it has just really touched me. One main way, I hold my husband a little closer every night, because he battled a childhood cancer, Neuroblastoma, when he was a child and I know that the outcome could have been much different. Lane has also showed me the importance of the heart of a child... we could all take a lesson from him and other children fighting cancer because they grow up very early in life and they really understand what is important. Lane is also one of the many reasons I am in cancer research. It is so important to find a cure. Tonight my heart is heavy for Lane and his family as his mom posted today that the doctors have told them that they believe Lane has entered the next phase where he will now begin to sleep a lot until he just one day doesn't wake up. I am still praying for a miracle as I know his family is, but I am also praying for no pain and peace for his family. I can't imagine watching a child go through that. Though I have never met him, he has taught me about life. Even though I have had cancer myself I continue to learn from others who are fighting.

Another one of those fighters is my friend Karson, or "Johnny" as I know her, who is living with stage IV breast cancer. She is one of the best people I know, and that is a major understatement. She is genuine, caring, selfless, strong... everything I want to be; everything everyone should want to be. I want her to beat this thing so bad, I can't even express it. The relationship she has with her husband is just adorable and it kills me that there is no way I can take this pain away from them both. I pray for her daily but it never seems like enough. I was lucky enough to get to visit her in Knoxville this past weekend and even though I could only stay a short time it was such an amazing weekend. We spent the WHOLE day Saturday just sitting on her couch talking, from the moment we woke up until around 2am the next day. Seriously. We actually talked so much that we completely forgot about lunch... when we looked at the clock for lunch it was almost 5pm. By the time we went to bed we both had sore throats. I haven't spent time like that with a friend in so long. She is really special to me.

Me and Karson right before I left.

Me wearing Karson's pink firefighter helmet that her husband's station (he is a firefighter) had made for her.

She has taught me so much. She has taught me how to fight, how to love, and how to live. And that is the best gift anyone can give.

And there are so many other people I pray for daily... Sarah who is fighting stage IV breast cancer and brain tumors- another amazing woman who has taught so many people so much. And Mandy, also stage IV breast cancer, who is raising 4 beautiful daughters while fighting and I know they will become amazing women just like their mom. Also, my friend Tiffany, who is living with stage IV thyroid cancer. She is fearless, caring, and really full of life. All such awesome girls that I am blessed to know.

Life is people. Nothing is as important as people. Cancer taught me that. My friends continue to teach me that. Strangers remind me of that. When we reach the end of our time we will not care how much money we made, what degrees we have, or how many places we have traveled. We will only care who we have spent time with, who we have loved, because it will be those people who will be by our side. I am blessed with the people in my life. I thank God for them all.

Stand Up 2 Cancer. Be Apart of the Cure.

I'm sitting here watching the Stand Up 2 Cancer fundraiser on TV and I hope I never stop being moved by the stories of these amazing fighters and survivors. It would be a really sad day for me if I watched someone's cancer story and didn't cry. I never want to become detached. I like that it moves me... I believe empathy makes us better people, better friends. And tonight I can't help but think about my own friends.

I have 7 friends under the age of 35 fighting stage 4 cancer. Of those 7, 4 have breast cancer, 1 has thyroid cancer, and 2 have colon cancer. And that is just those with stage 4. Many have stage 2, 3... brain tumors, sarcomas, lymphomas, etc. I watched my grandmother die of recurrent metastatic lung cancer, she watched both of her sisters die of colon cancer. One year after my grandmother passed, her dad, my great grandpa died of melanoma. Two of my cousins had colon cancer in their 30s, a third in his late 20s. Another cousin recently fought thyroid cancer. My mom has had basal cell carcinoma and I myself had colon cancer at 22. Even my husband is a Neuroblastoma survivor.

How is this?? I counted 91 people on my Facebook friends list that have had or currently have cancer. 91!!! And other than my family members, those are just people I have met over the past 4 years. I am amazed by the numbers, and not in a good way. How do we not have better treatments yet?? Or even a cure?? How is it that many treatments are the same as they were 40 years ago? Yes there has been progress but not nearly enough. It won't be enough until cancer is no longer seen as a fatal disease but just something you get and then take a little bit of medicine for and you're fine.

This reminds me why I am shoving my face in a molecular biology book right now trying to study my butt off for my exam this coming Wednesday. The other day I asked myself why in the world I was choosing to put myself through more stress of school, but this is why. For my friends. For my family. For the millions of people I don't know. For my husband. For myself. There has to be a cure. There has to be. Someone just has to find it. And I plan to spend the rest of my life looking.

Find a way to be apart of the cure. Donate, become a researcher, join/ participate in a clinical trial (if it's the best option for you of course), or raise awareness.

For my friends fighting... know that every morning I think of you and you are the reason I keep going. You have all made me a better person and I will always love you for that.

Testing Minors for Lynch Syndrome

I know this might be somewhat controversial, but it is something I feel strongly about so I want to post it. With Lynch Syndrome being hereditary the option of testing minor children eventually comes up. It's a parent's fear, passing on a genetic condition to their child so it's definitely something hard to discuss or imagine. I think this is a big reason many people with Lynch don't test their children. Another big reason is because of the unknown factor of how the child will handle the news, if bad. It's a big decision.

People with Lynch are recommended to begin receiving screening 10 years earlier than the youngest age a relative was diagnosed with colon cancer (i.e. if your parent was diagnosed at age 31 then you should begin screening at age 21). For me, my youngest relative, a first cousin, was diagnosed in his late 20s and I began having symptoms at age 17. It has been recommended to me by my doctor that I should begin screening my children (if I had any) when they are 7 yrs old, 10 at the latest. Crazy! But it could save their life. I know of a 10 yr old with Lynch that was diagnosed with colon cancer. That's crazy too.

Now, why would I begin getting my kid a colonoscopy at age 7 without even knowing if he/she has Lynch?? Their is a 50/50 chance, so they might not get it. Then also, why would I wait to screen them until they are in their 20s if they could have Lynch? To me, it makes the most sense to test them so that we can do what's best for them... either get them screened or save them from having unnecessary scopes.

I was a minor when I began having symptoms and it was because of my age that it took so many years for me to get diagnosed. Had I known I had Lynch then it might not have taken so long for me to get that diagnosis. My family didn't know about Lynch, which is why I wasn't tested earlier... but had my family known this gene ran in our family and knew it was possible I had it and yet didn't test me for it, then I have to admit, I would have been upset with my family for not testing me.

Kids are diagnosed with medical conditions all the time that they have to learn to overcome and deal with... childhood cancer, heart conditions, birth defects, learning disabilities... how is Lynch any different? My nephew will grow up knowing he has Tetrology of Fallot, a congenital heart defect. He will have procedures and heart surgeries and he will have to sit out when his friends play sports... how he handles it will largely depend on how we his family interact with him and how he is raised. I feel it is the same with kids and Lynch. How kids view the diagnosis will largely depend on how their parents view it. If the parent sees it as a death sentence then so will the child. If the parent sees it as life saving because cancer, if it ever happens, can be caught early, then the child will most likely see it that way too. Sure, it will be frustrating at times. What kid or teenager wants a colonoscopy? But again, it could save their life! I think at the end of the day anyone would rather catch cancer at stage 1 or even pre-cancerous instead of stage 4... and that is how a genetic test can help.

I'll never judge someone for not testing their children, but I feel the way I do about testing minors because I was a minor when I got cancer and I wish I had had the opportunity to be tested. I hope that as Lynch becomes more well known that there will be more and more resources for parents as well as support for children. We need an annual Lynch Syndrome conference or something!

Get tested! Get Screened! Prevent cancer!

Sneak a Peek: FDX Main Salmon River Trip

Here is a sneak peak of my trip with First Descents (FD) on the Main Salmon River in Idaho recently! I journal-ed everyday so I will be posting my entries here in the blog, but first I wanted to give a quick overview. Let me just say that it was AH-MAZING! What a wonderful refreshing week with friends. It was so much more than I ever expected. I went in with some minor expectations... I had been to two other FD kayak camps so I kind of expected this to be a similar experience just without the daily drive to the river and a nice house to come back to at night. But I was thrilled to be sleeping on beaches and going to sleep to the sound of the river. That week was all that I expected and also nothing at all that I expected. It was wonderful.

(The view from my tent the first morning I woke up)

(Our gear and a view of one the river from one of our beaches)

I expected it to be another week of "cancer camp", a time for us all to sit down and tell each other about our journeys and talk about our cancer. That was one expectation that wasn't realized. I was shocked (in a good way) to find the trip different from the beginning. Cancer was hardly mentioned; it became a mere background note, the unsaid reason why we were all together. Rather, we were just a group of friends going on an awesome kayaking trip.  This might sound weird, but it was as if we had grown up. I'd venture to say that we were all more emotionally mature than we were when we signed up for that first FD camp. At least I know that to be true for me. This year I no longer felt the need to discuss my cancer. If it came up, sure, that was fine. But there was no emotional longing to express what I had been through or receive validation that my experience was normal, that I was normal. I felt whole again. At least whole enough to be myself and focus on nothing more than enjoying the week and making new friends. And that is exactly what I did.

(Three best friends on costume night!)

(Me with Mango and Hoser... two of our awesome kayak guides!)

But the week wasn't all fun and relaxation... there were definitely challenges. I'll discuss more when I share my journal articles, but basically there were several days when the rapids caught me by surprise, scared me, and made me question my abilities. There were times that my response to those challenges was less than what I wish it had been, and other days when I surprised myself. But in the end, challenges and all, it was an amazing, epic, unforgettable trip. I took away so much from it and now that I'm home I feel more whole, more together, and... happier. I'm always so grateful to FD for what they give me every year and this time is no different. It is truly because of FD that I now have a fulfilling life post cancer. Thank you will never be enough.

(Me kayaking on the Salmon in Idaho)

Is My Cancer Different?

I just love finding new cancer organizations to plug into. Is My Cancer Different? is a unique organization because it exists to show people their treatment options and help them learn about targeted and individualized therapy for their cancer. No two cancers are the same. In my case, with colon cancer, no two colon cancers are the same. Molecular testing of tumors is beginning to offer amazing new options for treatment instead of blanket chemo and radiation treatments. For example... did you know that colon cancer in patients that also have Lynch Syndrome responds differently to chemo than sporadic colon cancers? The normal chemo (5-FU) is not considered to be the best treatment for Lynch colon cancers, but without molecular testing there can't be that individualized treatment.

This is why Is My Cancer Different? is needed. It is a place you can go to learn what individualized or targeted actually means, what questions to ask your doctor, and find info about clinical trials. Plug into this resource, share it with your friends and family... you never know when someone might need this information.

Would YOU Do Chemo?

I consider myself a pretty open person when it comes to different medical therapies. I will give most anything a chance until I research it and find proof that it is a bad idea. I research a lot of alternative cancer therapies and I've read a lot of stories with both positive and negative outcomes of these treatments. Before I found out I had cancer I always swore I would never touch chemo or radiation no matter what... I was determined to use natural therapies if I ever got diagnosed. I was certain that chemo/ radiation was completely unnecessary and I could cure myself.

Then I got diagnosed. Stage III/ IV colon cancer, they weren't sure which. I was still determined to skip the chemo and I said no to the recommended radiation pre-surgery. After surgery the diagnosis was changed to Stage II, thankfully. After some research I stuck with my decision to opt out of chemo, especially since my oncologist wasn't totally against my decision. While I would love to say I stuck with that decision because I was sure I could conquer the cancer with alternative therapies that just isn't true. They felt like they had gotten all of the cancer so I just didn't see the point in chemo. If it had been Stage III? I'm not sure what my decision would have been.

Over the past several years my feelings towards alternative methods has changed some. Mostly because of someone I know that has cancer. Like I said, I had always felt very strongly that chemo wasn't the answer, but many things have changed me. First, and foremost I might add, my husband. He had Neuroblastoma as an infant and was cured with chemo. I wouldn't be married to him without it, so how can I really be against it? Secondly, all of my friends I met at First Descents a couple of years ago. Almost all of them had chemo and it either cured them or at the very least extended their lives. I've seen it help a lot of people. Yes, I've also seen it not help people and yes I've seen the horrible effects it can have on people. But nothing is 100% effective. Alternative therapies certainly aren't. I have a friend who was diagnosed with early stage breast cancer over 2 years ago. She didn't have health insurance so she didn't have many options but she also made the decision not to do anything traditional. No surgery, no chemo, no radiation. She followed several well known alternative routes, like Gerson Therapy, colonics, lots of supplements, etc. I have never seen anyone so dedicated. She NEVER messed up, not once did she "cheat" or stray from her plan. Now, over 2 years later she is still following that plan. But now she has stage III breast cancer, possibly stage IV. Watching her get progressively worse as she does everything right naturally has really changed the way I look at treatments. If it works, it should be working for her. I could never be that dedicated.

I still believe alternative therapy has it's place in medicine. I love how the Cancer Treatment Centers of America incorporate naturopathic medicine into treatment in order to curve chemo side effects. Why doesn't everyone do that? There is no harm and it has been proven to help. But I've come to realize that no one method works for everyone... chemo doesn't always work, natural diet etc doesn't always work... every cancer is different and every situation is different. I can't judge anyone's decision regarding their treatment. I certainly wouldn't want anyone to judge me for mine.

So I'm curious... would you do chemo? Or would you ever not do chemo? Did you ever say you wouldn't do chemo and then changed your mind once you got cancer? Love to hear some feedback on this.

*Just as a note, I have met people who say natural treatment alone cured their cancer, just like I know people cured from chemo. I'm not against either one. I believe it is a case by case thing and a personal choice.