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FAP Foundation Guest Blog

As a third generation Familial AdenomatousPolyposis (F.A.P.) survivor, all things considered, I have lived a fairly charmed life, at least relative to what most people with this disease experience. That changed last September, just after I married my wife, Shawn.

In early October of last year, I was subsequently diagnosed with severe iron deficiency and a critically low blood count due to chronic blood loss. What followed was an assault-and-battery of tests, all designed to hopefully discern the source of the bleeding. In December alone, I was poked with a needle in excess of twenty times, experienced anaphylactic shock during an iron infusion, swallowed a pill camera to image my small bowel, and was forced to cancel our Mexico honeymoon trip because of a compromised immune system. During this extremely difficult month, my mortality was a common topic of discussion and I envisioned widowing Shawn far sooner than either of us ever anticipated.

In March of 2012, for the first time in the history of my family, I came under the care of an F.A.P. specialist. After six months of physical and mental challenges, ulcers, located at the site where my colon was replaced, were identified as the source of the symptoms. Shawn and I have found, through rigorous trial and error, coupled with exhaustive research into nutrition, that the bleeding ulcers are largely manageable by making nutritional modifications.

While we were relieved that my diagnosis was not terminal, I considered this a ‘near hit’. and reevaluated my particular gifts and aptitudes. Four years after receiving my Ph.D. in Chemistry from Auburn University (War Eagle!!!), I stepped away from my budding career as a Research Chemist at Argonne National Lab to start the F.A.P. Foundation.

The F.A.P. Foundation’s vision is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those diagnosed with Familial Adenomatous Polyposis (F.A.P.) and other hereditary colon cancer diseases.

TODAY

Today, when a patient is diagnosed with F.A.P., she will likely fall under the care of a gastroenterologist, whom has never treated a patient with this disease. In order to care for her, this doctor will have access to a limited amount of published resources. When the patient turns to the internet to learn what her prognosis means, she will find a few medical explanations, but minimal patient-based information. She will not be able to thoroughly research her surgical options. She will not be able to find dietary recommendations that teach her how to ensure proper nutrition for her surgically altered body. She will not find inspiring words that give her hope for living an active life with this disease. 

TOMORROW

Someday, when a patient is diagnosed with F.A.P., she will be supported, not only by her family, but also by a network of specialists and fellow survivors. She will have access to an entire community along with resources developed for hereditary colon cancer patients, their loved ones and care-givers.  This community will include survivors, hereditary colon cancer specialists, dietitians, surgeons, researchers, therapists, family planners and alternative medical practitioners. 

Ultimately, this patient, along with her loved ones and medical care givers, will feel empowered. Together, they will be able to make informed decisions. They will read inspiring stories and interact with other survivors. They will be filled with hope, knowing that they can lead active, joyful lives and can in-turn inspire others to do the same. 

We’ll are currently running a fundraiser on StartSomeGood that will run through January 31, 2013. The proceeds will go towards helping us develop a Hereditary Colon Cancer Patient Portal! In phase one, we'll condense currently available, however diffusely scattered, information into a 'one-stop shop' patient resource. Here, patients will be able to learn about:

Specialists

Clinical trials

Patient registries

Financial assistance opportunities

Screening and treatment options

We will also feature 'Stories of Hope' from other survivors in the community and offer the opportunity for survivors to share their own inspirational journey.

The patient portal will be expanded in Phase Two to host:

1) Educational resources including: 

Nutritional recommendations necessary to improve eating, sleeping and bathroom experiences

Webinars featuring patients, specialists, medical professionals, genetic counselors, and nutritionists

Information regarding medical and psychological support

2) Social resources including:

A platform for online meet-ups, 

Discussion forums, 

Community calendar of events

Our goal is to empower patients with the knowledge they need to confidently face whatever challenges and frustrations come their way.

Then, we’ll get to work on the next major goals of the Foundation which include promoting requisite research and health care initiatives, and providing financial assistance for screening, treatment, counseling, and family planning.

To learn more about our fundraiser and to support our goal, check us out on StartSomeGood (http://bit.ly/12d9mtd)

You can find us on Facebook (www.facebook.com/fapfoundation), Twitter (@FAPFoundation), LinkedIn (F.A.P. Foundation), and YouTube (http://m.youtube.com/watch?v=tRn_EHcvdks). You can also look in on our progress at www.fapfoundation.org. For more information, email us at info@fapfoundation.org

Thank you,

Travis Bray

Survivor, Founder, & President

and

Shawnie Bray

Care-giver, Co-Founder, & Vice-President

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 :)