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.

When God Speaks

Since I just posted about our sudden and unexpected discussion about adoption, I felt I just had to post this as well.

I am not one of these people that typical sees God speak in crazy random ways. I know several people that do... friends or family that will call me to tell me how that had just had such and such problem or such and such conversation and then they go to church and the topic is 100% specifically about the exact problem/ conversation they had just had and they knew God was showing them what to do. I've always wished I had more of those moments but I just don't. There are only a couple of times I can point to where I knew beyond all doubt that God was telling me what to do and most of those moments were when I had cancer.

But this morning was one of those moments. And I just can't help but share it. Over this past week I have done little other than think about what it would be like to adopt a child. I've talked with 3 adoption agencies, watched YouTube videos, read blogs, you name it I've done it. I have so many questions and very little answers. One of the big questions I have is about how international children do post adoption, like years later, in their teenage years and such. I see so many people with little babies they have adopted from China but I never see people with teenagers they adopted from china 10+ years ago. Are those kids happy with their adopted families? Do they adjust well? Do they have anger problems? Trust problems? Do they love their parents or resent them? Like I said, so many questions. And I have had no idea how to get those kinds of answers.

We have been looking for a new church lately for various reasons. We visited this one church several weeks ago and we liked it but we hadn't been able to go back yet. This morning we woke up and decided to go and we even decided to try a couples class before the service. We are really wanting to meet some other people our age. Well when we got to the class we realized I had mixed up the class times and we were actually in the college class. So we scrambled and went to the only other couples class we saw for people around our age. When we walked in I felt incredibly out of place. Everyone was older than us, some even had kids with them, and we were clearly the odd ones out. I just wanted to turn around and run back downstairs but I knew that wasn't going to happen. So I'm sad to say I sat there just praying it would be over quickly.

But then this lady walked in and with her was her daughter, who was obviously adopted... from China. She was about 12 years old and as cute as could be. I thought it was kind of a weird for a 12 yr old to be in the class but I thought it was even weirder for someone to show up with their teenage adopted daughter for China when I had been just thinking how I never saw any older adopted children. But I just wrote it off as a coincidence.

Then they proceeded to the front of the classroom and sat down and I realized they were there to lead the class. The teacher then explained how they were there to tell us about the lady's journey to adopt her daughter over 10 years ago. She spoke of the poor village from which this little girl was from, and how her mother left her outside of someone's house when she was only 2 weeks old, hoping they would raise her. She told of the poor orphanage she was sent to where she spent the first 11 months of her life sleeping on the floor and being taken care of by 14 yr old girls. She talked about her love for this child and how her decision to adopt was made the same month this little girl was actually conceived. We heard about the challenges she faced when she brought this baby home and how they didn't connect for almost two years. But then we also saw how close they were and what a great relationship they have now. It was such an amazing story.

It was only about 2 minutes into their talk when I felt the waterworks starting. It wasn't long before I couldn't hold them back and I found my self trying to inconspicuously wipe tears from my face. I knew I couldn't look at David because I would either start crying more or I would feel super embarrassed. I hung on every word they said and just sat there wondering how in the world this could be a coincidence. It just couldn't be. Then when it was over, my husband put his arm around me and whispered in my ear that I should go talk to her before she left. I was really surprised to hear him say that since even though he has been open to talking about it he has definitely not been the instigator in this whole thing. I asked him if he was sure and he responded by saying that there was no way this was a coincidence and it must be meant to be. As soon as he said that I got up and left the room and waited in the hallway for her to come out of the class. When she did, all I was able to get out of my mouth was "hey I wanted to talk to you" before the tears just started flowing. I was crying my eyes out but somehow got it across to her in broken sentences that we were just starting to think about adoption. She immediately gave me her card and took my information and then also have me numbers for adoption attorneys and other agencies too. She was so sweet and she actually runs an adoption support group that I am sure we will join if/ when we begin the process.

I then continued to cry throughout the whole church service too. I can't even tell you why I was crying. I certainly wasn't sad. I almost think it was just because I realized how incredible the whole situation was. I just felt God the whole time and that feeling was just so overwhelming, but in a good way. And it hit me that maybe, just maybe, God has a baby out there for us. Maybe there is even a baby out there right this very moment. Or maybe there is a woman carrying our baby right now. God knows even if we don't. But I think it is now obvious that He is preparing us for something, whatever that is. I'm excited to see what unfolds.

When I checked my email tonight, there was a response from an adoption agency that I had contacted to see if we would qualify to adopt in Kazakhstan. I'm not sure why that country is in my mind the most, but it is. Has been every since I saw an Extreme Home Makeover episode about a family who adopted 4 kids from there, some who were missing limbs. In this email they told me that they had called their rep in Kazakhstan to discuss with them our cancer history and were happy to report to us that while many Asian countries will not allow a history of cancer, Kazakhstan isn't one of them. We qualify to adopt from there. Maybe that is why I feel so drawn to that country. Maybe it is where we are supposed to go. Maybe.

Doesn't this Kazakh baby just melt your heart??

When in the world did I grow up???

I literally NEVER thought I would be writing this post. And I have been sitting here for 2 days trying to figure out how in the world this happened. The topic of children had rarely been a conversation topic in our house unless it was to comment on how people get major baby fever, or how kids are so expensive, or how we are way too selfish to have kids. In other-wards we didn't bring it up unless we had something negative to say. We believed we were way too young for kids (even though I'm the same age my mom was when she got pregnant with me... 26) and we believed we would never be able to afford a child. Not to mention we love to travel and do what we want... both of which would change drastically if we had a kid and we weren't ok with that... hence why we felt like we were too selfish for children. We had no plans for kids. Not to mention after we got married we went through fertility testing and were told it would be nothing short of a miracle if we ever got pregnant. So the kids thing was put to rest.

This picture kind of sums up our interaction/ reaction to kids... this is us with our niece, Emerson, over 2 years ago.

But something happened this past weekend. I certainly can't tell you what because I'm still trying to figure it out myself. This past Saturday I found myself at Emerson's 3 year old birthday party at Pump it Up. There were huge blow up slides and play things that the adults could get in with the kids. I must admit, it was my first time at a little kid's birthday party when I wasn't a kid. All of Emerson's previous parties consisted of a bunch of adults so this was different. And I have to say I enjoyed it. And not just because it was fun to play around with the kids. There was a little girl there who had obviously been adopted because she was Asian and her parents weren't. I just sat there watching her and I had to keep fighting back the tears. This happens quite often when I'm around kids so I wasn't surprised... I guess it comes from being reminded that I will never bring my own biological child to one of those parties. But something was different this time. When I saw that little girl I began to not just be upset from the reminder that I can't have my own kids, but I began to realize I would be just as happy being the mom to that little Asian girl. All I had to do was lean over and tell David I thought she was cute and he immediately knew what I was thinking. I think partly because in some way he was thinking the same thing.

Then the next day we went to Emerson's first ballet recital. The little Asian girl was dancing next to Emerson. Again, all I could do was look at them both and wonder if this would ever be part of our life one day. Looking back and forth from Emerson to the other child I had mixed feelings. Emerson reminds me that our kids won't look like us like she looks like Meagan (my sis-in-law) and there is a certain sadness with that. And I wonder if our adopted kids would be loved like other biological kids in our family are loved (on both sides). But then I'd look at the other girl (I wish I knew her name) and I would think about the possibility of having a child from another country... and an Asian child is our top choice. I could picture a life with a little child like her. Watching her dance made me feel as if there would be no difference at all. And I began to think about how I really felt about having a child. 

And then that night I saw this picture my sis in law posted from the recital of us with Emerson.

As soon as I looked at it my first reaction was OH MY WORD, When did I grow up???!! This is the first picture I have looked at and thought WOW I actually look like an adult. And then my second thought was wow, we actually look old enough to be her parents. When did that happen?? I have felt 21 for the past 5 years. And then I realized that this coming Saturday I turn 26... like I said before, the same age my mom was when she was pregnant with me. And it hit me, all of a sudden, like a ton of bricks. I AM an adult. I am at the parent stage of life. I am not 21 anymore. I'm married, I own a home, and I'm only 4 years away from being 30. Now don't get me wrong... I'm not saying age is the reason to have a child. And I'm not saying I want a child because I'm getting older. But instead, I'm saying that I realized that I am old enough for this step. It made me realize that it's ok for us to think about children. And being around all of these children made me realize that I just might really want this... a family. Before I always felt weird even thinking about it, much less discussing it. Though I must admit it has been in the back of my mind for awhile... it's just at the front now.

I last night I brought it up to David. Something that was pretty hard for me to do because we kind of had a mutual understanding that kids were not something that we wanted soon. But I told him that I was interested in thinking about adoption and maybe going to an agency and asking questions and getting some information. Surprisingly, he was open to it. And not just because I wanted to do it. He said he had even been thinking about it too. So this is a total 180 for us. But it just feels right and it hadn't felt right before.

Last night after we talked I requested an adoption packet from a local agency. It arrived in my email inbox this morning. We have since emailed 2 agencies with questions and we have started discussing potential countries. Of course we aren't saying that we want a child right this moment. It might be 1 year or 3 years or even 5 years before we are ready, but we want to look into it and know what to expect. Plus we will have to save for several years before we can even afford it.

But so far we are interested in adopting from Kazakhstan, China, Thailand, Russia, Ukraine, or South Korea. But we still have to see where we qualify... some countries will disqualify you if you have had cancer. It is a super bummer because cancer causes so much infertility... adoption might be our only option! If we can't qualify to adopt a child we could be up a creek. 

Please pray for us as we prayerfully consider this step. It is going to be a difficult, emotional, and stressful process but if we are meant to have a baby God will provide one for us. Also, if you have any info for us please write me! We can use all the help we can get... this is so new for us!

Also, as a note, we aren't giving up the possibility of a biological child one day... there are still lots of tests we need to have done... but I believe I will want to adopt a child either way.