Guest Blog for Caregivers by Rob Harris

YOU ARE A NEW CAREGIVER 

WHAT DOES THIS MEAN?

The realization that you are now a caregiver could have manifested itself over an extended period of time, as your loved one's health began to slowly decline, or instantaneously, with the pronouncement that all is not well. Thus, you may have had time to prepare yourself for your role, or you may have been shocked into realizing your world has just been rocked, and you have not had the time to determine what that means to you, your loved one, your immediate family, your close friends, and your distant relatives.

If you are unfamiliar with what being a caregiver entails, you might experience fear, confusion, frustration, and a myriad of other feelings that need immediate resolution.  

Next, the role of caregiver stares you squarely in the face. Personally, I had no idea what that meant and, unfortunately, I learned the hard way – I was self-taught.

With knowledge comes understanding. With understanding comes a sense or order and a reduced feeling of chaos. For me, obtaining the information I needed to know had a bit of a calming effect.

My suggested Caregiver Learning Curve Phases are as follows:

·         Phase 1: Self-Assessment: What do I know? What do I need to know about – and quickly?

·         Phase 2: Knowledge is Power: Time to do some homework/research.

·         Phase 3: Create a Plan: Organize yourself and your activities. Begin to record pertinent data.

·         Phase 4: Work Your Plan: Create, modify, and refine your plan.

·         Phase 5: Expand Your Knowledge Base: Continue to study everything possible about the medical malady your patient is facing.

·         Phase 6: Flexibility is a Must: As the patient’s medical conditions change, the caregiver must adjust their caregiving methods to mirror the changes.

·         Phase 7: Self-Analysis: What have I gained from my experience? How will this affect me immediately, in the short term, and for the rest of my life?

Throughout each of these phases, there are a few constants, things to do and consider along the way:

·         Ask Questions: Ask your loved one about their feelings, beliefs, desires and, though unpleasant, what they would like to occur if the outcome is not positive. Consider medical, personal, financial and all other categories that might come into play at a later date. Determine who to ask and what questions you have.

·         Be Prepared: Be proactive. Determine the questions and answers before you need to act. Research your various options. Create an action plan in the event you need to take action. Do you need to consult with an attorney, a home health-care provider, a member of the clergy, a funeral home or cemetery? These are but a few of the categories that need to be addressed in advance of a possible occurrence. Though the hope is you never will need to act upon the information obtained, it is important to have them handy, just in case.

·         Keep Records: Write down everything that happens, when it happens. Chart all medical information and doctor-nurse-patient activities. Keep a journal of your thoughts and emotions throughout. It may help you to brainstorm with yourself and record your feelings for later use. Your memory may be compromised due to stress and exhaustion. Writing everything down is essential for you and your care recipient. It was one of the more meaningful activities I undertook and it helped me immensely throughout our ordeal.

·         Experimentation May Improve the Process. Never get too comfortable with your routine. If there are things that bother you, consider viable alternatives. Are you allowing for enough “me time?” Can you improve upon your methods? Trying different activities and strategies might make your caregiving job more bearable and manageable – and might diffuse possible tension between the loved one and caregiver.

·         Obtain Resources: Find others who will volunteer to assist in the care of the person you’re helping, or who might be willing to take over a few of your less desirable duties. Seek friends, relatives, professional agencies, volunteer groups, etc. Create a list of support you need and who can provide it.

·         Self-Assessment: Continually evaluate your own feelings and emotional standing. Are you becoming depressed? Are you taking care of yourself along with the patient? Is life still enjoyable? Are you resentful? If you are unable to respond positively, perhaps it’s time to consult with a family physician, a member of the clergy or a health-care professional.

·         Do Not Go It Alone: It’s okay to have fun, to laugh and to enjoy yourself. If you are unable to do so, it may be time to see professional assistance.

Being a caregiver is not easy. The learning curve is steep and always changing. In order to succeed at offering your loved one the best care possible, one needs to embrace the stages of learning, and never stop adjusting, for each day, each hour and each minute may be different from the last.

Once you master your role and responsibilities, it could be a treasured and invaluable time for you and your loved one. The relationship will surely change. In many cases, as it was for my wife and me, it changed for the better.

Rob Harris 

www.robcares.com
   

I am Searching. Searching for a Way to Wreck My Life.

Someone recently asked me when in my life I was my happiest. I voiced a lie of an answer because I knew the truth would sound too strange. The truth is that I was my happiest during the first few months of my cancer diagnosis. July 2008-November 2008. But who would understand that? I can see even many cancer patients/ survivors finding that crazy. I find it crazy. But the truth remains. That is when I was my happiest. The happiness left when the "normal" returned. There are days that I beg God to give me that happiness again. But deep down I know that it is my own doing that it has stayed at bay.

That happiness (or "joy" as I like to call it) had nothing to do with having cancer. The cancer made me cry, it hurt my body, it stressed out my family. That did not make me happy. What brought me joy was what changed in me during that time period. How my life was different. I miss that different. Soon after that diagnosis I faced the very real possibility that I would die, and maybe as soon as within the month. When I faced that possibility, the fear of dying that I had carried with me my whole life, as most people do, it left. Don't get me wrong, I wanted to live and I thank God every day that I have another day to wake up and experience life. But during that time of illness, when I lost my fear of death, it was because I began to see God. I no longer could rely on money, or people, or even doctors. None of those things cure cancer. God does. My life was stripped away... I basically moved to Baltimore and left the comfort of my home, my marriage crumbled and with it my hopes for a future and a family, and all but one friend disappeared from my life. To most these things sound horrible, and they are. But by stripping away all that I had ever relied on... friends, future plans, and a comfortable home... I had nothing to turn to but God. And when I did that I began to see amazing things, things I had only heard of happening, things that I had never seen in my life before.

Me in the ICU right after surgery. I think this is when I truly realized my life would never be the same. That things were changing. It wasn't until about 18 hrs later that I realized God was 100% in it all, when I almost died and He met me with peace and comfort. I will never forget that feeling of true grace.

One example, I had a hard time finding a hospital that could get me in quickly. But God knew right where I needed to be. Johns Hopkins in Baltimore was the only place that would get me in immediately. And remember how I told you that ll of my friends disappeared but one? Well that one happened to live in Baltimore. And she, along with my mom and sis in law, was one of the biggest blessings God has ever given me. She shaved my legs, brushed my knotted hair, entertained me, took me to the aquarium, brought me food, and stayed in the most uncomfortable twin bed at my hotel just so she could spend time with me all the while working a full time job. My mom of course was there for every single minute of everything. My sister in law even flew up to help... she also shaved my legs and then wheeled me around the mall in my wheel chair. God gave me the exact people that I needed at that time. He met my needs.

Eunice, Me, and my sis-in-law Ashley in our hotel room

My mom with me in the hospital

Ashley and me right before I was discharged

 Me and my Mom on a post-surgery outing to the mall and the pier

Me and Ashley at the Pier

Eunice and Me going to the Aquarium the day before surgery

Me and Eunice hanging out in the hotel

But that was just one way. I also saw Him provide me with the perfect doctors: Dr. Pawlik, Dr. Diaz, Dr. Giardiello. I have kept in touch with them and Dr. Diaz even sent me an email to let me know he will be in my town in a few weeks to give a presentation. I'm excited to see him.

Me and Dr. Pawlik, my colon surgeon. After our first meeting I knew he was supposed to be my surgeon, so much so that I decided to forgo my plan of a laproscopic procedure and allow him to do an open one. It was by far the right decision. God was definitely in that one.

God provided everything for me when I felt I had nothing. He provided me with hope when I felt there was none. He provided me with peace when I was confronted with the possibility of death. He showed me, broken, sinful, disease-ridden me, grace. In my sickness He gave me life. In my desperation He gave me comfort. When I lost my way He helped me find it. I promised Him that if I lived I would never turn away again.

Then I got better. My body healed and cancer became a set of scars, a new screening protocol, a few residual side effects, and a binder of medical records I now carry with me. And when I was faced with normal western culture again, I did what I promised I wouldn't. I walked away. I began living for myself. Doing and saying things that I would never have done or said just months before. I am embarrassed to look back on that behavior.

I didn't stop believing in God and I did not forget what God had done, but I did begin to explain it away. Coincidence, luck, because of doctors, because of people... because I was faithful. All of which I knew were not true. I was not faithful, God gave me faith. And as soon as I turned away, I began to see my life spiral. My peace and hope left. I saw less grace in my life. I lost my joy. I looked for joy in all the wrong places. Materials, travel, friends, boys... anything other than God, I ran to it. I once again began believing that I could plan and execute my life better than He could. I was wrong and I am still feeling the affects of it.

I began reading a book today and in this book I saw what I have been searching for since I had that encounter with God during my cancer battle. The book, "Kisses from Katie" by Katie Davis, is something I want to recommend to everyone. Katie moved to Uganda when she was 18 to follow God and care for the Ugandan people. She is now the mother to 13 adopted Ugandan children and she is just 23. But Katie loves the Lord and is living a life for Him... she knows the joy that I briefly found and desperately want back. I know that this has nothing to do with cancer, but it does have to do with pain and suffering and how one person can be used by God. That is what I want for my life, and for your life... to be used by God.

I want to not worry about life or death, health, finances, relationships, or my future... not because I don't care, but because I know deep in my heart that someone already has all of those things taken care of. "I know the plans I have for you, says the Lord." Reading that book has made me realize that God's plan will be carried out despite my plan and that what I think is good or right for me may not be what He has for me. The "needs" that are expected in the western world are not necessarily what God says we need. And I honestly want none of those things if it means not having God. 

Here lately I have been missing my relationship with the Lord more than I can express in words. There are days that I cry in a way I never have cried before... it is a yearning and a cry out for spiritual help. God is speaking to me, I can feel it, but I still don't know the answer yet, I still don't know what He wants me to do. But I'm asking, I'm praying, and that is more than I have done in the past few years. I have relied on myself and I have found that I cannot provide anything for myself that I truly need. Only God can do that. 

So I am searching. Searching for the way that God will wreck my life for Him. I look forward to it, pray for it... I need it. I think we all do.

Like Katie, I have been given so much... and to whom much is given, much is required. I'm beginning to realize that more and more each day.

Chris4Life Colon Cancer Foundation

        The principal goal of Chris4Life Colon Cancer Foundation is to permanently eliminate the threat of colon cancer through discovery of a cure. As long as people are dying from this disease, we will be at the front lines of the fight. To this end, we will fund cutting edge research so that the brightest minds and best institutions are empowered to cure colon cancer for good. Until then, Chris4Life Colon Cancer Foundation is committed to significantly improving the treatment experience for patients and caregivers, and to dramatically raise awareness about colon cancer in general. Chris4Life will utilize health and wellness as a means of integrating the mind, body and spirit in our approach. Working together we will build a culture of care and foster relationships with research institutions, advocacy groups, the health care community, and the general public. Chris4Life four core values are Compassion, Empowerment, Perseverance, and Life. www.chris4life.org


         At Chris4Life Colon Cancer Foundation we have made it our mission to eliminate colorectal cancer. To this end, we have created the Christine Sapienza Research Fund at the Otto J. Ruesch Center for the Cure of Gastrointestinal (GI) Cancer and the Georgetown Lombardi Comprehensive Cancer Center. We have also developed a fund at the University of Pittsburgh Cancer Institute and Memorial Sloan-Kettering Cancer Center in NYC. These funds were set up to support innovative medical research directly addressing Gastrointestinal and Colorectal Cancers. By funding comprehensive cancer research institutions, Chris4life is committed to providing financial support to the progressive development of the treatment and cure of colorectal cancer. These philanthropic contributions help to enable researchers to pursue the development of new drugs and therapies for phase one trials. We have developed our own Medical Advisory Board to help us find the best cutting edge research across the country to fund.


       The Chris4Life Fund was established in 2011 to help patients and caregivers get through the day with cancer. It is grounded in the belief that patients, families, and caregivers deserve comprehensive and high quality programs that help improve the care process. To help alleviate some of the financial burden associated with cancer treatment, the Chris4Life Fund distributes $250.00 grants to patients in need of financial assistance. These grants are provided to underserved, underinsured, and uninsured individuals who are at or below three times the federal poverty level. www.chris4life.org/chris4life-fund


       One of our latest finished projects is the “Chris4Life Colorectal Cancer DVD Resource Guide” which is designed to provide recently diagnosed patients and their families with information from other patients, doctors, survivors, nurses, and social workers. These individuals speak directly to the patient from their personal experiences to provide answers and insights into what the patient may expect during their treatment and care. This one of a kind resource helps the patient navigate through subject matter associated with a recent colorectal cancer diagnosis. It addresses what the patient can expect physically as well as the emotional, personal and day-to-day issues from the viewpoint of those who have been touched by the disease personally. To view online or to request your own free copy of the DVD to be mailed to you please visit www.chris4life.org/resource-dvd .


       One of our main focuses is awareness. We know how important early detection and proper screening is in our fight to end colorectal cancer deaths. We host events all year and throughout the country. Our largest event to date is the “Scope It Out 5K Walk/Run” here in Washington DC. Last year we hosted more than 4,000 runners, walkers, patients, survivors, caregivers, friends, family, and volunteers at Freedom Plaza in Washington, DC. We also hosted the first annual “Scope It Out” in Detroit Michigan. As we grow we hope all of our events will continue to grow with us. On that note we have started planning for the first annual “Scope It Out 5K’s” in Chicago, Pittsburgh, and New York City for Fall 2013.


       Since my mother passed away a little over three years ago, Chris4Life has done everything in our power to end this disease. Please don’t hesitate to reach out to us to get involved in our events all across the country, or if you are in need of information as a patient.


Thanks,

Michael Sapienza
Executive Director and Founder
Chris4Life Colon Cancer Foundation

10 Things to Ask Your Doctor About Post-Colectomy Life

In 2008 I had a total colectomy following my colon cancer diagnosis. They removed my colon and about 4 inches of my ileum, but were able to leave about 3 inches of my rectum. The procedure was called an ileo-anal anastomosis. These are questions that I wish I had asked my doctor before having my total colectomy. Not that any of them would have changed my mind about the procedure, but I would have liked to have been more prepared for the after-effects. (Keep in mind I already knew the possibility/ probability of higher frequency and urgency after the surgery).

In no particular order:

1. How can I avoid dehydration?
    -I still have doctors tell me that I shouldn't be dehydrated. But then I go to get blood work and they can barely hit a vein because, in their words, I am too dehydrated. Not to mention I have symptoms of dehydration such as extreme thirst, fatigue, and headaches. Dehydration is a risk after a total colectomy and needs to be discussed with your doctor. It is good to know how much water you should be drinking daily (which might be more than the general public) and if it is necessary to also include an electrolyte drink in your daily regime.

2. Will I need more fiber or less?
    -I have had a hard time getting a good answer for this one... some doctors have told me to avoid fiber, others have told me to increase my fiber. So this is something to really discuss with your doctor. I think most would say more fiber (sometimes 25-35g a day), but again, something to ask your doc.

3. How can I avoid blockages?
    -Intestinal blockages can be a serious issue after surgery. They can lead to more surgery and removal of more intestine, but worse, can result in ruptures and infections if not treated. Since your small intestine is now trying to take on the role of the large intestine, it is holding more waste that it was meant to. If you are dehydrated you will be at a higher risk for blockages. Fiber can also play a role.

4. When can I start exercising again?
    -Exercise is very important after an abdominal surgery, however exercising too soon can cause hernias or incision tears, so asking your doctor about when you can start is important. Also, always listen to your body... if it hurts, stop and consult your doctor.

5. Is there a certain diet I should follow?
    -Certain foods can cause an excess of air bubbles in the gut that can be very painful. Things like onions, raw veggies, beans, and dairy sometimes need to be avoided in your diet. But everyone is different and some can tolerate those foods while others can not. It is best to gradually try new foods and test how they affect you. I had to avoid certain foods at first but now I can eat mostly anything (though raw veggies still tend to give me problems).

6. Will I have a hard time absorbing vitamins and minerals?
    -Vitamin B12 absorption occurs primarily in the ileum, so if any of your ileum was removed this level could be low. It is important to ask your doctor about checking your levels. Also, depending on whether or not you are dehydrated, you may also develop low levels of magnesium and potassium, among other things. Vitamin D is especially important for preventing bowel cancer, so having enough in your body is extremely important if you have already received a colon cancer diagnosis; Vitamin D can become low after a colectomy. I personally have been told to take 10,00IU of VitD a day based on my levels, as well as weekly Vitamin B12 shots.

7. Will I need to take any supplements?
    -This really goes with the above question. If your doctor tests your vitamin and mineral levels and they are low you will need to discuss possible supplements with him/her. If the levels are low enough they may suggest an IV, but for most this will not be necessary. There are many capsules and even liquid vitamins that you can look into taking.

8. What is the possibility of ending up with an ostomy?
    -Going into a colectomy surgery the goal is to resect and reconnect, not place an ostomy, but it can happen; it did in my case (I had a temporary ileostomy). In the same way, after a colectomy you don't expect an ostomy, but it can happen, such as in the case of a blockage or recurrence. Discuss this with your doctor and ask any questions you may have.

9. How will this effect my energy level and how can I help that?
    -This might not be an issue for everyone but it has definitely been an issue for me. I sleep more than I should and my daily energy level is low. I wish I had discussed this with my doctor so that maybe I could have avoided it. It is something I would suggest asking about. Low energy can sometimes be contributed to low Vitamin B12 levels.

10. Are there organizations that offer support for people with colectomies?
    -There are! It took me a couple of years to find them but they have been so helpful. The Colon Club is the main one, their forum and Colondar have been so helpful since my surgery. I would suggest asking your doctor as well... he may know of local groups in your area. Also, there is always Google :)

There are also certain guide books online that are helpful, such as THIS ONE.

*Obviously I'm not a doctor, so this is not to be taken as medical advice.

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.

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.