Another Perspective Part 3 - Fear

The following excerpt is the third thing that Rachael Yahne’s mentions in her article 5 Things that they never tell you about life after cancer

There will be a new sense of fear in every part of your life

It just doesn't look the same once you know how fragile your life is. That fear, of the past and of it coming back, can haunt you for the rest of your life after cancer. But what I like to tell others in my public speeches and online articles (even the ones not about cancer) is that even though there will always be fear, you don't have to let that fear decide what you do and how you feel. You don't have to let that fear run your life or even ruin your mood. You can feel it, acknowledge it, and still choose to love and to be joyous and even to take risks in your life after cancer (whether you've experienced it or someone you love). You don't have to be ruled by it; you just have to choose to live from and for something greater than that fear.

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Another Perspective Part 2 - Appearance

The following excerpt is the second thing that Rachael Yahne’s mentions in her article “5 Things that they never tell you about life after cancer

Some people will not like seeing pictures of you

I'm not sure why people feel it's appropriate to tell me that they "don't like" seeing pictures of me during treatment, when I was bald and overweight from the steroids. I personally think I look great, because I'm doing something incredible. They often tell me that pictures of me during treatment make them sad, which is strange because they don't make me sad and I'm the one who went through it! So as far as this survivor is concerned, if I can take the experience itself as well as the photographic proof, so can you. Don't tell me it makes you sad, in fact don't feel bad for me at all. Be proud of it, be in awe of it, and see that this is the story of triumph, not tragedy.

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Another Perspective Part 1 - Emotional & Physical Changes

My Scars Tell a Story
By Mark Everett Kelly

When I started this blog back on June 17, 2019, it was my intention to describe my experiences currently living with the side effects of cancer treatment.

RachaelYahne

Survive & Thrive

More Stories Living As A Cancer Survivor

My blog submissions have ranged from advice to warnings along with compassion. I am learning with you as we go along in this journey together, so I hope that as this blog reaches more of you that you feel free to share some of your perspectives with us.

Back in May of 2016, Rachael Yahne, wrote her experiences living after treatment in an article/blog entry titled “5 Things They Never Tell You About Life After Cancer”.

Rachael and I share many similarities in our stories. She was diagnosed at age 17 (I was 3 months shy of my 17th birthday). She was treated for an advanced form of cancer at world renowned hospital (I was treated at Memorial Sloan-Kettering in Manhattan, NY). We both were offered the best in terms of support, educational resources and mentors.

The next five blog entries will deal with my view on Rachael’s points.

It Will Be Hard To Go Back To Normal

Both Rachael and I agree wholeheartedly on this. I can’t stress enough that whatever you viewed as “normal” before, will change. For some the change is dramatic, while others might not be as severe, but nothing in your life will be like it was before. I choose to separate the changes you experience into two areas, emotional and physical.

EMOTIONAL

You relationships with everyone will permanently change. Some will look up to you and think you can now offer advice on life, others will feel uncomfortable and even guilty and avoid you.

The following excerpt is from Chapter 11 of “My Scars Tell A Story” titled “A Harsh Reality”.

“People now looked at me as different, which also means they expect different things out of me. It’s almost like I was not allowed to be a seventeen-year-old. Because of what I went through, I could not live the normal life of a seventeen-year old. People now expected more out of me. As soon as I came back, teachers and parents wanted me to share what I went through with the other kids as a lesson on how short life can be and to appreciate it. Parents would ask me to talk to their kid who was in trouble and advise him to straighten up because life is short. I wasn’t ready to do this. I just wanted to be Mark again. I wasn’t ready to be a role model nor did I want to be. When I started to get back into classes, it was so hard for me to concentrate on school. Thankfully, my teachers were very understanding, but sometimes too understanding. When I would not hand in an assignment or would hand in unsatisfactory work, they would let it slide. I’m not sure this was good for me. At times when I needed to be pushed, I wasn’t. Whether I liked it or not, I was receiving special treatment.”

SURVIVORS GUILT

Another part of the emotional changes you feel can surround feeling guilty about surviving. When experiencing treatment, almost everyone will encounter and even befriend other patients and family members of patients. Watching your child, spouse, sibling or friend die is one of the hardest experiences of this life. By no fault of their own, others might look at you with an attitude of “Why are they so special”, and even think that you have an attitude of superiority, especially if you talk about your relationship with Jesus .

PHYSICAL CHANGES

These changes can be the most damaging. For me, I could no longer function sexually as I did prior. While that is very VERY difficult and humiliating to share, I can’t expect others to open up about their struggles when I’m not being honest.

I could no longer have children. Sex (at the time I was a virgin) was also now much more challenging because of the damage that radiation did. These are issues that make me feel like less than a man. I see myself as damaged and that no female should have to deal with my inconvenient body functions.

Another issue was that I could no longer hold in my bowel movements. This started about 6 months post treatment and have never gone away. After gallbladder surgery in 2003, I had to wear a diaper, which I still do.

The emotional and mental humiliation of living with those two issues post treatment is severely humiliating for me. I will discuss the mental and physical issues and how they affect my life again in a later blog.

For more on Rachael Yahne, please visit her website .

As always my heart and prayers are with you.

God Bless

NEXT BLOG DATE: August 15, 2019 - Another Perspective Part 2

Living As A Cancer Survivor - Winning The Mental Battle

My Scars Tell a Story
By Mark Everett Kelly



Some days It takes all my strength to just get out of bed.

Living with two permanent illnesses in Crohn’s and Lymphedema can be a exhausting battle both physically and mentally.

I don’t believe in sugar coating the truth and doing so would forfeit the purpose of this blog.
The fact is that the mental battle you fight to stay positive and not want to just lay in bed and feel sorry for yourself can be overwhelming.

I would love to tell you that my faith lends me to start each day reading scripture and speaking out against the negativity that could prevent me from doing my part in supporting my family, but I don’t. However, when I discipline myself to start my day in that fashion, it does make a difference.

Side effects of treatment effect everyone in different ways. It is very important that you start a regimen which can help your body heal from the damage done to your body, especially your kidneys and liver. Exercise is also important in getting back whatever weakness your muscles and joints experienced.

Keeping a daily journal is also helpful to understand how your body is feeling everyday post treatment. Doing so will ease your mind concerning the progress you are making along with showing that you are strong enough to overcome the limits that are being placed on your system.

My heart goes out to all those who deal with the never ending mental battles that ensue after treatment. Ultimately, the victory is ours in that we have overcome something that wanted to kill us.

My prayers and thoughts are with you. I pray mercy, health and claim victory over the negative thoughts that can invade your mind as you prepare to start your day.

God Bless

NEXT BLOG. Monday, August 12

Living As A Cancer Survivor - Keeping Positive

My Scars Tell a Story
By Mark Everett Kelly

Nothing can shatter the hope and promise of a life more than the diagnosis of cancer. It can take the most positive person and turn them into a hopeless schizophrenic.

When I was diagnosed in December of 1990, Rhabdomyosarcoma was a death sentence. Stage Four Rhabdomyosarcoma was my diagnosis. I was told I had six months to live and even if I went through with treatment, the depths of what they needed to attack my system with was so severe that they told me there was a good chance the treatment would also kill me.

I was always a very positive person. My faith in God was always a big part of my life since I could remember. I would encourage anyone who is dealing with such an unknown as cancer to have something you can look to sustain you during the roughest times.

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During my first few weeks in Memorial Sloan-Kettering Hospital, I would run into people that were searching for anything to put their hope into. One lady gave me crystals that she told me to put under my pillow. Another spoke about tarot cards and getting a reading.

I want to encourage anyone who gets diagnosed with cancer to never lose hope in the things you believe in that sustain you. If you don’t believe in God, use whatever you have looked to leading up to diagnosis to give you hope.

WHY IS GOD THE ANSWER FOR ME?

My faith in God did not waiver upon my diagnosis. Many asked if it did, but God did not give me cancer. Despite having faith that doesn’t eliminate the threat of bad things happening to me. We live in a fallen world. However, my hope in God and His promises for me grew indefinitely. I came to an entire new understanding of what it is like to rest in the hope that God gives us.

I believe God is the answer for everyone. However, I respect others ability to choose what makes most sense to them. I never would judge another on what they view as what they need to make it through the day. No one should do that to anyone. Cancer is hard enough without someone shoving their religion or anti-religion down your throat.

POSITIVE THINKING CAN MAKE A HUGE DIFFERENCE

Saying that, keeping positive is vital in fighting the constant battle your mind and body is fighting against a invading threat. That does not mean that you live in a fantasy land. It can be a fine line, but what is realistic is for the individual going through treatment to determine.

I encourage each of you to keep fighting the good fight. Never quit. Never give up. You never know how your story of persistence will bless others in the years to come.

God Bless and as always my prayers and thoughts are with you.

Mark Everett Kelly

NEXT BLOG DATE - Thursday, August 8, 2019

Living As A Cancer Survivor - Expectations Part 2

People don’t care. Or do they?

One thing that a cancer survivor might be forced to deal with is having to depend on others. 

My Scars Tell a Story
By Mark Everett Kelly

Before I begin, I just want to clarify that regardless of relation or anything other than being someone’s child, no one is under any obligation to help you.

What exactly is reasonable for you as a survivor to expect from relatives, friends, sympathetic people, religious people or anyone that you thought would be there.

Here is the answer. NOTHING.

I speak from the heart and apologize if I am being overtly negative or making anyone feel guilty. I don’t mean to say that there won’t be anyone who will want to help as long as you are sincere. People give out of the goodness of their heart and their desire to help others that are suffering.

The cancer community is filled with people that have pure hearts and want to help those in need. Never be ashamed of your situation or to ask for help. However, people are under no obligation to do so. Expecting things from others will lead to depression, sadness and bitterness.

The best thing you can do is be honest about any situation you are in. The world and especially the cancer community is filled with angels that want to help. As long as you appreciate the people around you that make sacrifices everyday to help, you will be pleasantly surprised by the many blessings you will encounter.

Never quit. Never give up. Reach out and share your struggles if you need help, but don’t allow yourself to become bitter and angry. I fight that battle often and it doesn’t help.

God Bless

NEXT BLOG DATE: August 5, 2019

Living As A Cancer Survivor - Expectations

My Scars Tell a Story
By Mark Everett Kelly

Upon being diagnosed, the disruption cancer causes will affect every aspect of your life. When I was diagnosed, I had the same questions that anyone would have about a known disease that I’m now facing.

I definitely anticipated that this fantastic athlete would not be susceptible to the normal side effects that most cancer patients deal with. I was very confident that I would be one of the few patients who would not experience any hair loss, vomiting or any other of the horrible experiences most cancer patients go through.

I definitely appreciate now that I had no idea what I was in for. If I knew, there is no way I would have had the courage to face it everyday.

Almost every circumstance I encountered during treatment, I experienced the worst case scenario. If there were side effects to experience, I experienced them and it was the worst case of what could happen.

When you start treatment, understand that you CAN anticipate the unexpected. How? Don’t have any expectations. Take each situation and treatment one day at a time.

To read more about the specifics of what I experienced, please read “My Scars Tell A Story”. If you need any help, prayer or someone to listen, please reach out to me or the many groups that help cancer patients.

For those who are recently diagnosed and are looking for guidance, please visit Cancer University .

Living As A Cancer Survivor - Depression

My Scars Tell a Story
By Mark Everett Kelly

One of the many side effects you might experience after cancer treatment is depression. Every patient responds differently to treatment, which can vary from types of chemo, lengths of radiation and social situations.

For instance, those who are married might feel they no longer can meet the emotional and physical needs of their partner. Children might feel that their friends and parents don’t treat them the same way. Young adults might notice their co-workers complaints and comments can cause them to have less patience in discussions.

All of these things can lead to thoughts and experiences that differ from what you were used to before treatment. Obviously if treatment is long enough (more than a year), these changes will become more obvious the longer your protocol is.

WHAT CAN YOU DO?

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It is vital that therapy be a consistent part of either your current treatment or post treatment time period. Many patients don’t recognize the mental and psychological changes that occur as a result of treatment. In my life, I still suffer major psychological damage that cripples me on some days.

WHAT MY EXPERIENCE WITH DEPRESSION IS

I wouldn’t say I suffer from consistent depression, cause on most occasions my outlook on life is positive (I’m sure others would say different and perhaps I am in denial!). My depression tends to be situational. It is often brought on by arguments with those close to me, feeling intense pressure to be perfect in romantic relationships and being threatened with changes.

Financial uncertainty is another major cause of worry and depression for me. I will highlight more of these issues in my next blog.

Always remember that no matter how hopeless a situation looks (personal, financial or work related), it is somewhat within your control and things can be done to help. Remember that you have survived something that was a major battle. No matter how awful, sad or hopeless you feel about any of the previously mentioned areas, you are a survivor and that in itself is proof of your character to not give up and your desire to fight. These are all things that you can take with you into your post treatment life.

NEXT BLOG DATE: Monday, July 29, 2019

Living As A Cancer Survivor - Savor The Day

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It doesn’t matter when in life you receive the diagnosis of cancer. What was once a struggle getting up in the morning to go to either school or work, now has become real struggle.

When I was diagnosed, I was just like any other junior in high school. I had no idea the natural gifts and talents God blessed me with. I took so many things for granted.

This is my resounding suggestion to those who are supporting a current cancer patient, a sibling of one or even a parent of one. Never, ever take another healthy day for granted.

When treatment ends, the happiness you feel from not having to be held hostage by doctor visits and blood tests is enough to make you do cartwheels. However, your body will most likely never be the same again.

I encourage whomever is suffering through treatment now or if you have survived your treatment, take today to give special notice and thanks to the people around you that you are thankful for. Share your feelings of appreciation towards someone you love.

My Scars Tell a Story
By Mark Everett Kelly

None of us are guaranteed tomorrow so PLEASE do whatever you can to make this day the best July 18, 2019 that you can ever have. You will never get another chance to live this day over.

God Bless

NEXT BLOG DATE: July 22, 2019

Living As A Cancer Survivor - Transplant

I will never forget the day July 15, 1991.

Without a doubt it was one of the worst, most painful days of my life.

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27 years ago today around 12:30 PM, my oncologist and doctors from the bone marrow transplant unit entered my room.

This was the final phase of my cancer treatment. The previous 7 months had seen a healthy, active, normal 16-year old that was a sensational athlete, reduced to a 115 pound weakling who couldn’t stand up or walk.

Here is what happened that day and during transplant. This is taken from an excerpt from my book “My Scars Tell A Story”

When you read this, please understand how valuable and special life is.

I am an excellent public speaker that has so much to share and give back.Please help support my mission by sharing this blog and my book with anyone you know that is suffering from this disease. For anyone who needs an entertaining public speaker, you will never forget the day you hear me speak.

On July 15,1991 I received my bone marrow transplant. The marrow was inserted from a thing that looked like a turkey baster, into one of the lumens in my chest. The doctor didn’t slowly inject this stuff either; he pushed it in full throttle. That was the strangest sensation that I had ever felt. After that was over, my body kind of went into shock, and I vomited for a couple of hours.

My Scars Tell a Story
By Mark Everett Kelly

About a week after transplant was when, as they say “the shit really started to hit the fan”. By then I had no blood counts, sores were forming all up and down my esophagus and mouth to where I could not swallow for about two weeks. My mom would give me ice to suck on that I would just let trickle down my throat. That was just the beginning.

The first real scary experience from my transplant occurred when I started to see blood in my urine. This was the most frightening thing that I had ever seen. My doctors thought it was from my body’s shock from the transplant, but when the bleeding increased more and more, they decided to operate.

When my surgeon went in, he discovered why the bleeding was so severe. The radiation therapy that they gave me two months ago had torn a massive hole in my bladder. When I woke up from surgery, I found out what it was like to have a catheter. This was completely tragic for me. To see that thing in me, just totally took away my manhood. I was in extreme pain for the week that the catheter was in me. What made the catheter worse was the medicine they gave me that was supposed to make my bladder heal. In order for the medicine to work, it had to sit in my bladder for 30 minutes and the nurse would tie up the catheter line, so no fluid would run through. That sounds easy enough, right? WRONG! I had never felt such intense pressure on my bladder, and had tremendous pain just trying to keep the fluid in. I could hold it in for 3 maybe 4 minutes without screaming in agony. I had the strongest urge ever to take a pee, and was not able to go. That’s what it was like, and it was complete torture.

Finally, after a week, they took my catheter out, and boy you couldn’t imagine how uncomfortable that was. However, my relationship with catheters and bladder surgery was just beginning. Meanwhile, during this time, I started to experience severe pain in my lower back. My doctors were afraid that it was the cancer returning, but when they x-rayed me it actually showed that I had a collapsed lung. Not the greatest of news, but better than what they thought. The collapsed lung was due to me catching pneumonia, which I got because of having such low blood counts for 3 weeks.

Lets recap the last month. I had sores so bad in my mouth and down my throat that I could not swallow. I had severe bleeding in my bladder, and a catheter in me. I had no blood counts to speak of, and now had a collapsed lung with pneumonia. Shed a tear if you have to, this is not for the light hearted.

It was now the beginning of August, and although the sores in my mouth were healing, not much else was. My bladder acted up again which required another surgery and catheter. Every day I would receive a platelet transfusion, because I was losing a tremendous amount of blood. Some days I would even have two platelet transfusions. After about a week of having the catheter in, the bleeding became massive. The blood was now clogging up the catheter and I had to be rushed in to emergency surgery to stop the problem. I was never more scared in my life at this point. My bladder was spasming so bad that they had to hold me down because I was kicking and screaming from the pain. The blood in my bladder had now completely clogged my catheter and it was no longer draining. Imagine having the worst urge to pee and not being able to, knowing that it was because of blood backing up in to your kidneys. I went to the operating room four times in a week and a half and was losing blood faster than I was making it. It was getting very bad and the future was not looking good. I was very sick and weak, but I still had the faith that God was going to pull me through. It was very tough, and at times I wondered if God was listening, but I still had faith. It got so bad some nights that I would ask God that if things didn’t get better soon to please take me home and take away my pain.

During the last week of August, I started to spike these really high fevers. I was consistently around 103-104 degrees for about two days. The doctors had figured that one of the lumens in my broviac had been infected, and wanted to test it by running fluid through it. My mother was absolutely convinced that the lumen was infected, and demanded that the broviac be removed immediately, and that if the doctors ran anything through my lumen she would sue the hospital.

Emergency surgery was needed to remove my broviac, which meant no anesthesia. I was going to have to stay wake while they cut me open, and removed my broviac. It wasn’t total butchery as the doctors had the decency to numb the area with Novocain. My nurse stood in the back of the room and held my hand as the doctors cut in to my chest and started to remove my broviac. I could see the blood dripping down my chest on to my stomach. As the knife cut deeper I started to scream more and more. Remember, this was something that had been in my body for eight and a half months. The surgeon had a difficult time removing it and a procedure that normally takes twenty minutes, wound up taking over an hour and a half.

After the surgery I was so relieved. The doctors did find a staph infection in one of my lumens. If they had run anything through that lumen, I would have died within minutes.

Thank God that my mother didn’t listen to the doctors and had them remove it. Moms always know best, especially mine.

That incident almost was the end, and by the last week of August not much else was getting better. Besides having pneumonia, a collapsed lung, massive bleeding, and an infected lumen, I also had no blood counts. Time was running out and my counts needed to come up, or else. Things became so morbid that the last weekend of August my doctors told my mom and dad that I was not going to make it through the weekend. They told them to call family and friends and tell them the same.

Living As A Cancer Survivor - Hard Days

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Everyone knows the things about themselves that make them feel inadequate or less than others. While for each person it is different, the effect it can have on your mind, mood and reaction to things are generally the same.

After surviving cancer those issues can multiply. The side effects of treatment will leave you a different person, mentally and often even physically. Worries and concerns you didn’t have before treatment will surface.

MANY FACTORS

Survivors react to these changes in many different ways. For some they can feel guilt or a certain discomfort talking about those issues because they worry that others will think they aren’t happy to have survived. This is especially true when they are around current patients that are dealing with life and death issues. The same worries occur even if their prognosis is hopeful.

My Scars Tell a Story
By Mark Everett Kelly

WHAT TO DO?

It’s always much easier to give advice than to take it. Human beings already deal with a series of emotional, physical and financial worries that make them feel inadequate. Being a survivor, I try to deal with my issues the best I can. Others that love me give advice and try their best to support me the best they can. However, these scars will never go away. They can make me want to give up and die on some days. On my best days, they make me want to run away by myself so I don’t have to burden anyone else.

What usually helps ground me back to functioning normally is that I don’t have a choice. If I ever want to be the person God created me to be, I need to understand my limits, while devastating to me, are not something that defines my worth. Always remember that it can be worse and to try to make the best of what you CAN do. While the battle never is fully won, you can daily victories.

Whether you believe in God or not, He did not create you to be afraid. It says in 2 Timothy 1:7 “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” If you don’t believe in God, understand that you matter and your life can still be a source of inspiration to others.

Please reach out to me or anyone else if you feel anxious, sad or depressed. We are all here to help each other.

God Bless

NEXT BLOG DATE: Monday, July 15, 2019

Living As A Cancer Survivor - Radiation

My previous blog on July 3, dealt with one of the treatments that cancer patients have offered to them at the time of diagnosis, chemotherapy. This blog focuses on it’s ugly stepsister, radiation.

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When I was diagnosed, I had no clue what the long term issues I would face would be, if in fact I did survive. I believe most patients and obviously your doctors are more concerned with keeping you alive. While those options were much different for me in 1990, modern medicine has advanced to make treatments like radiation and chemotherapy one of many treatments your doctor should suggest.

My Scars Tell a Story
By Mark Everett Kelly

When I was two months into treatment, my tumor had disappeared and I no longer had any signs of cancer in my body. My doctors and I discovered this after a bone scan I had done in early February 1991.

Despite receiving such wonderful news, I still had five more chemotherapy treatments and four weeks of radiation to complete. I wanted to stop treatment and resume my life, but my doctors assured me and my mother that doing so would kill me. “This cancer hides” my doctor told my mother, “and if Mark stops treatment it will be like putting a gun to his head and pulling the trigger”.

Needless to say that wasn’t much of a choice for my mother to make. Being that I was still 16 at the time, I could not make that choice for myself.

I was terrified of facing the remainder of my protocol. Rhabdomyosarcoma had been a death sentence for the previous patients diagnosed. Even if they treated the initial cancer, it would return in a much more dangerous form. If I wanted to survive and live a long life, I had to complete my protocol.

Radiation treatments took away my ability to have children. It also took away other aspects on my manhood that no 17-year old should have to face. Months later during bone marrow transplant, the effects of the radiation tore my bladder wall and caused severe bleeding that resulted in 11 bladder surgeries in three weeks. It was a miracle that I kept my bladder and survived.

I soon discovered four deep, long scars on my lower back. This was a result of the radiation reaching an area it was not supposed to. The radiation was supposed to be limited to my mid section, going no lower than my rear and no higher than my hip bone. How it wound up higher and left me with scars on my back, I have no idea.

After treatment ended, the long-term side effects of radiation started to appear. I was diagnosed with irritable bowel syndrome in 1992. IBS turned into colitis, in 1997 which then resulted in Crohn’s disease in 2003. Eventually the side effects of Crohn’s, which includes bowel blockages and a thinning and scarring of my small intestines, would result in me having to retire from ESPN and took away my ability to consistently work. While surviving cancer was something I was extremely grateful for, living with side effects that now prevented me from earning a living has left me facing a very unknown future on how I can provide for myself.

I don’t post these things to scare anyone, but to make them aware of all the possible side effects radiation can cause. PLEASE PLEASE get a second opinion and seek other options if your doctor suggests radiation. Make sure they explain all the possible side effects that can result from where they will be radiating. Treatment has now advanced where other options should be available that will not cause long-term side effects or add diseases that will permanently affect your life.

For more on my story of cancer survival and the side effects suffered, read my book “My Scars Tell A Story”.

NEXT BLOG DATE: July 11, 2019

Living As A Cancer Survivor - Chemotherapy

It\s been almost 28 years since I had my last round of chemotherapy pumped into my veins (July 15, 1991). That day was my bone marrow transplant.

How do you describe having liquid poison running through your body? LIQUID POISON. There is no nice way that chemotherapy kills just the cancer cells in your body. Poison kills ALL your cells. It makes you nauseous, weak, frigid, brittle, very very irritable and takes your hair.

I remember before chemo when I used to fuss about getting up and having to go to school. Now I had to get up to go to chemo. I never complained about getting up for anything since.

I can’t begin to tell you the horror stories of what chemo was like. The vomiting, the sweats, the moans, the pain, the feeling of getting run over by a truck. The scars can take a long time to heal. Its been 28 years for me and I still cringe at that word.

I sincerely hope that with the breakthroughs they are making that chemotherapy will soon no longer be a viable method for treating cancer. You can’t fix the damage poison does.I live with it everyday.

Thank you Lord for giving me the strength to write today and help me be a sense of hope for those living as a survivor.

NEXT BLOG DATE: July 8, 2019

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Living As A Cancer Survivor -Dealing with Self Worth

One of the many feelings that goes through my mind is that my life does not matter. When you wake up every morning hating the body you have that has been altered from its original shape, it can play very destructive thoughts.

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To hear Mark’s speeches or find an upcoming event, please click here.

My Scars Tell a Story
By Mark Everett Kelly

In my case, I can’t imagine why anyone would find me attractive. I’m the only one that knows the side effects I face everyday that makes me the most unattractive person that has ever lived. While others might look at me and see something totally different and valuable, I fight a constant battle in my mind to understand that I still have value as a human being.

I know this is a very real battle for survivors along with current patients. You are not alone.

NOTE: Because of the holiday on Thursday, my blog with be updated on Wednesday July 3 this week.

NEXT BLOG DATE: July 3, 2019

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Living As A Cancer Survivor - Dealing with Financial Struggles

After my divorce I wake up in intense panic worrying about being homeless and how in the world I can afford to live without any sustained income coming in. I feel constant guilt from not being appreciative enough of just surviving. I should know that life is precious and these things don’t really matter. However, it does. If you find yourself unable to work and do the job you did before treatment and in some cases went to years or schooling for, what can you do?

Letting go of the person you were before treatment and accepting the person you are now can be a humiliating experience that can trigger many negative thoughts. What am I going to do to provide for myself? I can barley get up and walk to the bathroom on some days, never mind earn enough money to make sure I can pay my rent?

My Scars Tell a Story
By Mark Everett Kelly

Why do those thoughts enter my mind? Imagine being the captain of a boat where you have total run of the ship and are the most important voice aboard. Then imagine that the boat sinks and you no longer have the ability to save yourself or more importantly save others who are looking at you to help.

This is what life feels like when you are no longer in control of the financial pressures of your life.

There is no easy answer. I find myself in that position right now. I wish I had the magical answers and can point you toward a person, place or thing that will make everything easy. There is no such place. You still need to do whatever you can to fight, claw, crawl and force yourself to use your imagination and creativity to reshape yourself to survive. Despite doing those things you are still not guaranteed success.

I pray that God can bless me with people who are sensitive to my struggles and can help provide me with answers I need. I desire to use my story of survival to inspire and spend the rest of my days glorifying God and making a difference in others lives.

REMEMBER THAT YOU STOOD UP

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To hear more of Mark’s speeches and find upcoming events click here.

Society makes a huge deal of celebrating select people who “Stand Up 2 Cancer”. I and others like me stood up and gave our lives to this disease and now cannot support ourselves or our family. In addition to the fear of not being able to pay bills, I face a very real possibility of being homeless.

Here’s the thing that survivors sometimes think. The world doesn’t owe us a damn thing. Cancer survivor? Too bad, not my problem. Can’t afford to pay your rent? Too bad. You should be grateful you are still alive,

Many of us feel like we are a drain on society because we can’t support ourselves. If family or friends don’t make a room for us to stay, there is a good chance we can’t afford rent.

WHAT OPTIONS ARE AVAILABLE?

If your find yourselves in the position of not being able to afford the place housing, don’t be ashamed. There is help available and you did nothing to warrant punishing yourself. Please ask for help. Don’t be too proud, If someone does not help out, you can apply for income reduced housing with your state. Visit your local social security or social services office for most assistance.

YOU STILL CAN PROVIDE A SERVICE

No matter what profession cancer took from you, never forget that God does not create people to feel sorry for themselves. Each of us are created by a loving heavenly father that made each of us so unique that we are the only ones that can give others our gifts.

Many churches can provide you will a outline that can help you discover what your spiritual gifts are. The experience that you share with others can provide them with hope and direction. Never doubt the impact your life can have on someone else. There is always talents to discover if you are unable to go back to the career you had before. Never quit. God can still use you to bless others.

If you wish to donate to my cause and help in my financial struggles, please visit my website CKMagicSports and click on “My Scars Tell A Story”.

NEXT BLOG DATE: July 1, 2019

Living As A Cancer Survivor - Disability

One of the many lifestyle changes cancer survivors might face is what to do if you can no longer work. After making a solid career for myself as a researcher at ESPN, the long term side effects of chemotherapy and radiation left me unable to complete my assignments on a consistent basis.

In my case, being a researcher was one of the few career opportunities that were perfect for my skills. Instead of climbing a career ladder that would eventually see me being able to advance and help my then wife prepare a stable financial future, I now was unable to work.

My Scars Tell a Story
By Mark Everett Kelly

Before I continue, I don’t mean to compare any of these issues to what you face during treatment. All of these situations are part of everyday life that survivors have to account for. While not having to sit through chemo and radiation any longer is a joy in itself, that doesn’t mean that because you know what it’s like to suffer through treatment that it diminishes the stress you face trying to make ends meet getting back to regular life.

I was now faced with having to survive on what long-term disability would pay me. At first I was receiving long term pay from The Hartford which I paid into during my 10 years at ESPN. As I stated in my previous blog, they would pay me 60 percent of my salary through 2037. However, that does not ever increase. Those on long-term disability from your employer, must apply for long term disability with social security after a year.

Applying for disability benefits with social security is a nightmare. Since there are so many that take advantage of the system, they are very tough on approving new applicants. A lawyer is also needed for you to make your case, which can be very expensive. The Hartford provided me with a lawyer, since it was also in their best interest that I be approved by social security.

To hear previous speeches or find upcoming events to see Mark, click here.

Since the process is very detailed and thorough, the lawyers at the Hartford explained that just about everyone gets denied in their first application. So did I. In my second application I had to appear before a judge who I explained my health conditions to. If it’s not humiliating enough to be unable to control your ability to poop, explaining it to a judge in front of others was worse. I wanted to bury myself in floor. Making my case included admitting to having to wear a diaper at 35 and that some days going to the bathroom as many as 30-40 times before noon. Unlike the first application, I was approved the second time.

The Hartford paid me every two weeks, which makes it much easier to separate your bills and prepare for payments. However, social security pays out once a month (second Wednesday of every month which can be a eight day difference in some months) . The other major difference was that they only awarded me 2/3 of what The Hartford was paying me, which reduced my income even more. The Hartford, however, made up the difference, so I still was making the same amount I made before applying for social security disability. Social security (unlike long-term disability) also tries to account for increases in living expenses. In most cases this helps very little.

The long-term side effects that destroy your body can leave survivors without much hope. After beating cancer. some doctors, lawyers or other professionals who spent as many as 8-10 years honing their skills can find themselves unable to work and with mountains of student loans, Where is the help for them?

NEXT BLOG DATE: June 27, 2019

Living As A Cancer Survivor - The Beginning Part II

Nearly everyday you live with a autoimmune disease is a day at some point you want to physically harm your body or at least think about how unfair it is that a once healthy, strong and attractive body can turn against you.

Such is the case with dealing with the side effects of chemotherapy and radiation that leaves you with scars that will never heal. One of the most hopeless feelings you experience in your new life as a survivor that is faced with these realities, is how to live within the means of something you were never prepared to live with.

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After being forced to retire from my job at ESPN in April of 2008, I now had to fo face the harsh realities of living off disability. This restriction was made easier by the fact that I was recently married in July of 2007 and had my wife’s insurance and salary to fall back on. I did not have to have money taken out of my social security disability.

My Scars Tell a Story
By Mark Everett Kelly

Well, that\s not totally true yet. When you go on disability you first receive it from your employer, which in my case was ESPN who I paid into during my years working. I received a check every two weeks from The Hartford, which would pay me until the year 2037. Required in that is a significant number of checkups that they require with your doctors to update them on your condition.

Now, the downside of being paid LTD from your employer is two-fold. First, you only get 60 percent of your salary at the time of your leaving work. The second thing is you are required by law to apply for social security disability.

For those of you who are not familiar with the process of applying for social security disability, the fun is just starting. In my next post, I will share what the experience was like for me.

NEXT BLOG DATE - June 24, 2019

Living As A Cancer Survivor - The Beginning

Today marks the first day of a blog I am starting to help share my daily experiences being a cancer survivor.This blog is dedicated to the countless brave soldiers that are fighting or have sacrificed their lives to this horrible disease. This is for the parents that face the daily agony of watching their flesh and blood fight for their life. This is for the survivors who have “beaten” cancer, but because of the side effects of treatment can no longer work. Men and women who spent their lives building a career they can no longer depend on. They “Stood Up To Cancer” but now face the prospect of being destitute.

GIVEN SIX MONTHS TO LIVE

I was diagnosed with Rhabdomyosarcoma on December 12, 1990. Rhabdomyosarcoma is a very rare skeletal muscle cancer that at the time only produced 66 cases a year in the United States and of the 66 cases most dealt with kids between the ages of 2-6. The doctors initial diagnosis gave me six months to live.

The Dorrance Publishing Company has published my experiences during my ordeal with cancer in “My Scars Tell A Story” (now available on Amazon and other sites).. I started writing the book back in the summer of 1994 and its been a long and difficult process getting it edited and published. I am very excited to share my story of perseverance, prayer and patience as God carried me and my family through the worst times of our lives.

I am now 45 years old and have been on disability since 2008 due the side effects of the chemotherapy and radiation. About 18 months after my treatment finished I started to suffer from irritable bowel syndrome. That grew worse and eventually grew into Crohn’s disease.

Along with chemotherapy and radiation, I also had lymph nodes removed in my groin in December 1990. This resulted in the onset of lymphedema, the effects of which started to become obvious in 2003. Not long after that I was unable to travel to my job in Bristol Connecticut at ESPN. My bosses in studio production and the research department then allowed me to work from home. During the last three years of my employment (2004-07) I was working full-time from home.

I had the privilege of working for some wonderful people at ESPN. I am so grateful for the incredible patience and graciousness of people like Craig Wachs, Ed Macedo, Jeff Bennett, David Brofsky, Mark Gross and Norby Williamson, who always supported me in my health issues.

After being promoted in 2006, I was given a lower grade in my next evaluation in 2007. Despite my disappointment in my performance, I knew that I had performed at the best level I could considering my circumstances which were now a lot worse, Since I could no longer consistently accomplish very reasonable job responsibilities, I had to make a very hard decision. After discussions with my bosses, I applied for disability soon after. I still depend on that today.

  • NEXT BLOG DATE - -June 20, 2019 - Part II of “The Daily Life of a Cancer Survivor”

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