Sunday, December 30, 2012

Guest Blog for Caregivers by Rob Harris



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 

Thursday, December 20, 2012

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.

Monday, December 17, 2012

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.

         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.

       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 .

       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.


Michael Sapienza
Executive Director and Founder
Chris4Life Colon Cancer Foundation

Saturday, December 1, 2012

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.
"Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting..... 'WHAT A RIDE!'"