Living As A Cancer Survivor - Persistence

Below you will find a brief section of today’s blog

What I understood then is you have to be just as relentless against this disease as it is against you. You have to be persistent. The battle turns post-treatment into a mental war. Every day you can be faced with a reminder of things that you can no longer do. After you thought you had won the battle of your life, you realize that the damage inflicted has forever changed you.

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Living As A Cancer Survivor - Reliability

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Among the many things that cancer took from me was my ability to be relied on consistently. I could no longer control some situations because of my health. I was forced to resign from my job at ESPN because I could not always answer the bell to work every day. 

When you are 33, and you can no longer be relied on to do your job, because of sickness, that is a tough pill to swallow. 

I always prided myself with keeping my word. Due to the onset of Crohn's disease and Lymphedema, any plans I make the other party knows it's contingent on how I feel.

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Living As A Cancer Survivor - Forgiveness

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One thing we all struggle with is forgiveness. I have made some brutal mistakes that have devastated others and been incredibly selfish. I have been the poster boy for thinking only of myself. When I felt convicted and made aware of my behavior, I experienced long seasons of remorse and self-loathing.

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Dying Cancer Patient Final Words Inspire Many

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When you are facing death, the thoughts, words, and advice that form in your mind are remarkable. There were a few times during my brush with death that I expressed my views about what is essential in life.

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Living As A Cancer Survivor - Worrying

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This topic is difficult for me of which to speak. I don't want to be a hypocrite, so let me start by saying worrying impacts my life consistently. I did not have this mindset before being diagnosed with cancer. I am not worried about the cancer returning, but about the side effects that create environments that I can't control.

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Living As A Cancer Survivor: Actions speak loudest

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When you are dealing with cancer, many things will be outside of your control. As a family member, spouse, sibling, or parent, seeing a loved one suffer is one of the worst feelings you will experience. The sentiment is mutual for the patient or survivor. 

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Another Perspective Part 5 - Questions Anyone?

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

People will be scared to ask you questions (even though they'll have a lot of questions)

I'm not sure why people are scared to talk to me about it. I know they are just trying to be gracious, and I can't speak for all survivors, but as far as this one goes: ask away. If you have a question, let me answer it. If you wonder something - from what it's like to be on steroids to whether I lost my eyelashes and eyebrows too - go ahead! Sure there are days in my regular, healthy life after cancer that I'm not giddy to talk about it. But when it really comes down to facts, I'd rather help you understand so that if ever you know someone who has to go through this battle. That way, you'll know more of what to expect and what that person might need. Additionally, if you're my friend, I'd like you to know me. So don't be afraid of me or afraid to talk to me, it only makes me feel 'othered' as Janet Mock says.

The truth is, every cancer fighter's experience will be incredible different. The fact that we need to talk more about the struggles after cancer is a very good sign to me, because it shows that we are at a point where survival is up, and people are looking to thrive and live well after cancer. So don't be afraid to talk about it, don't be afraid to reach out.


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Another Perspective Part 4 - Awkward Conversations

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

There will be some awkward conversations...

In life after cancer and treatment, even the physical parts of your being are different. Especially when it comes to dating. There are scars. There is skin that is very tender to the touch because of the radiation. There are hangups and insecurities that are caused by the way my body is different now. So yes, there will be a level of communication absolutely necessary to make sure both partners are comfortable.

And there will be even worse conversations about it. There will have to be talks about what the future looks like with someone who has been through treatment, and who can never guarantee that it won't come back. There will have to be talks about what life would look like if it did come back. There will have to be a shared courage around it. There will have to be openness and honesty to a degree that most couples don't have to offer. But trust me, it will make your love so much richer and more incredible.

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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.

Cancer University.png

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?

Lion.jpg

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.