Tag: Cancer

Timeless

Today’s a new day! Being a cancer survivor and dealing with multiple health issues forever changes your relationship with time. It seems to pass so quickly, and there’s always a question about how much of it you’re going to get. At times it can be overwhelming. But maybe that’s why I always loved running. A 5K, 13.1 or 26.2 run can feel timeless if you’re embracing every moment of the journey.

Before I had to quit running a number of years ago, running almost made me forget my health issues. As I continue running this crazy beautiful health journey, I realize time marches on whether we are ready or not. I am as ready as I’ll ever be. Let’s go! ~OC

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Life with Myasthenia Gravis

Good Morning! More writings from the “Lost Writings of OC.” I thought I would share a little bit about my Myasthenia Gravis (MG) experience with you today. I originally wrote this in 2024 and updated it several weeks ago. As I share this with you, my MG is getting much worse.

Today’s a new day! Myasthenia Gravis (MG) is an autoimmune disease that causes muscle weakness. But what exactly does muscle weakness feel like? To understand more, let me walk you through a typical day with MG.

For me it feels like I’ve run out power. In general, I feel it’s a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I cannot move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or just sit down.

Also, I get pain in my hip flexors – basically my butt. It’s the same kind of pain you get from overdoing a workout: an achy soreness that feels like you have overused the muscles. These days, I deal with hip pain on a constant basis.

When my shoulders are weak, which is most of the time lately, I feel like I just cannot lift my arms. Like there are heavy weights holding them down.

My neck continues to get weaker. I just cannot hold my head up. It falls to the side or down, or I have to prop it up with my hand on my chin and my elbow on a table, or with a U-shaped neck pillow and a high-backed chair. As my neck weakens, I develop achy pain in my upper back from trying to hold my head up. I sometimes get a nauseating gagging sensation from my throat collapsing.

Eating with MG can be a challenge from having to take breaks while eating, to choking on solids and fluids. Sitting down to eat or drink is a major undertaking. I also start to slur my speech, and I get short of breath from minor exertion, or sometimes just sitting still.

I always have muscle weakness, but it gets more severe with heat, exertion, lack of sleep, infections, or other stressors. Summertime can be very challenging. Extreme cold is not my friend either.

Based on my weakened lung muscles, I am unable to take deep breaths. This causes issues on so many different levels. These days, every breath is a struggle.

I have to stay on top of my medications for the Myasthenia Gravis. I have to take one of those medications four times a day. Oh, I better not miss those dosages or things can go down hill pretty quickly.

I try to dress in cool fabrics and wear layers in winter. And I try to protect myself from sickness by keeping my vaccines up to date, wearing a mask when needed , and using hand sanitizer or washing my hands frequently when I am out of the house. I tend to fist bump and avoid shaking hands or hugging.

You know how much I love to walk, but that is getting harder these days. I have added a walking stick to help with my balance. This is a far cry from my marathon days

My medical team continuously tells me I am a one in two billion case with all of the multiple diagnosis. With Myasthenia Gravis, I fall into a small group of people being diagnosed with MG after having their thymus removed. My cancerous thymus was removed in 2003, but I was not diagnosed with MG until 2009. I will not go into what the thymus does, but feel free to research on your own.

How friends loved ones can help

One thing my friends and family do for me that’s immensely helpful is helping to educate themselves on Myasthenia Gravis so they can explain it to others and better understand my daily challenges.

I only have a few people besides my bride, who truly know me and my MG that well, but they are lifesavers. They’re also the ones I’ll talk candidly to when my MG gets me down. I cannot be relentlessly cheerful all the time, but I try.

I hope this gives you a better understanding of what Myasthenia Gravis looks like and how it affects my life on a daily basis. Each day is a struggle, but I continue to push forward and look at all the positives in my life. I encourage you to do the same. Go have a great day! ~OC

Dear God, Sometimes the pain is so great, I cannot think beyond my current struggle. On hard days, please ease my pain and help me focus on Your goodness one day, one hour, one moment at a time. Let Your overwhelming peace wash over me and remind me Your mercies are new every morning (Lamentations 3:22-23). There are days when I beg you to take the pain away. Days I just don’t have the strength. In those desperate times, I ask for Your unending strength to sustain me. I cannot do it alone, but with You all things are possible (Matthew 19:26). Amen

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A Day In The Life

Today’s a new day! Ever wondered what a day living with chronic illness and health challenges looks like? Today I will take you on a journey into the twist and turns of a day living with long-term health issues.

From the moment I wake up, I’m already facing barriers. My chronic illnesses make it difficult to get going. For those not aware, based on my health issues, I have slept in a recliner for about the past twenty years. It’s just too hard to get in and out of a bed. Every day is a balancing act where I have to be mindful of my energy levels and make sure that I’m taking time to rest. 

An Introduction To My Health Journey:

In 2002, I was diagnosed with multiple forms of arthritis. That year was filled with a lot of experimental treatments. Then in 2003, I was diagnosed with cancer. Thankfully I was able to have surgery to remove the tumor and never had to walk through the struggle of chemo and radiation. Let’s speed things up. From 2007-2024, I have been diagnosed with Parkinson’s, Myasthenia Gravis, Gastroparesis, Type 2 Diabetes based on all the steroids, had a stroke, diagnosed with cluster headaches and just a few months ago was diagnosed with early onset dementia. That’s my rap sheet!

What My Night and Morning Looks Like :

Based on my neurological issues, I am up and down most of the night. So I never wake up feeling rested. I wake up stiff, so I need to move around and take a host of medications in the morning. Of course meds have side effects, so that can be difficult.

Since I deal with gastroparesis, eating has been a major issue for many years. That makes taking in fluids and food a huge and painful task. So every meal, every day is an adventure.

My mornings are dedicated to spending time with God, journaling and trying to exercise. For me, walking is the best type of exercise for me. I never know how many laps I will be able to get in. I have to be careful not to overdo it. If I do overdo it, my body will pay for it the rest of the day. I spend some time each day for reflecting on life and looking at how I can hopefully encourage others as I continue running this journey. These days, I tend to take a lot of short cat naps. Over the last year, the pain has increased, so that’s a daily struggle. Unfortunately, pain meds and gastroparesis do not really care for each other. So most days, I just live with the pain.

One thing I choose to do everyday is get dressed. I never lay around in my sleeping clothes. It makes me feel good to get cleaned up and get dressed.

My favorite part of any day is spending time with my bride and friends that choose to reach out. Spending time with loved ones is very important to me. I love sitting around and enjoying great conversations. Also, I try to read every day. My love for reading has been challenging the last few years, since it’s hard to stay concentrated. I also spend time listening to music each day. Music can make everything a little bit better.

In the evening, Laura and I like to talk about our day and possibly watch a little television. Based on my day, my bedtime varies. But since I sleep in my recliner, I can fall asleep anytime my body and brain allows me to. Every night is an adventure.

What I consider a daily self-care must do:

Writing about what I’m grateful for in my journal helps me remember the positives, even on those really hard days. Living with long-term health conditions can be exhausting and can be very negative if you allow it to get on top of you. 

Several people have asked if I had one day without pain and could step away from my health journey what would I do?

I would lace up my running shoes and go for a very long run. For those new to my journey, in my healthier days I was blessed to complete 350 marathons.

Another question people asked me a lot: Is there anything I would like to share about daily living with chronic illness and life challenges?

There’s a lot, but I do not want to make this post any longer than it already is. One of my hopes is, people will realise that we never know what someone else is really going through. So be kind and respectful. It doesn’t help when people tell me how I should be living out my health journey. Just be supportive and walk through this journey with me.

By sharing what my day to day life is like, I hope I can raise awareness of the bigger picture as people only see snippets of my journey online or see me on my best days in person. I am not sharing this for pity or sympathy and I am not complaining. I just want to give you some insight into this crazy beautiful health journey.

The Takeaway:

Writing about my day living with chronic health issues has been quite eye opening to me to see how much life has changed over the years. I have a strong need to celebrate the love and support I have received over the years from family and friends. Writing this post has let me see how faithful God has been to me, as I continue to run this beautiful journey.

I hope that you have found this post to be a helpful insight into life with with long-term health issues. There are so many people walking through a tougher battle than me. So if you know someone dealing with chronic illness, take the time to reach out to them and support them on their journey. ~OC

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Embrace the Detours

Good Morning! Today’s a new day! This time 21 years ago, I was arriving at the hospital to have a golfball sized cancerous tumor removed from my chest. A lot of memories from that day. My mom and mom-in-love coming to take care of Laura and I. Family/friends hanging out at the hospital to pray and support Laura. The power going out at the hospital right before surgery. God giving me a vision during surgery that I would start running marathons and sharing my story (I was blessed to run 350 marathons). The doctor telling me that the team had gotten all of the tumor. Jesus was in the mist of the whole thing. Thankful He has blessed me with 21 more adventurous crazy beautiful years. Twenty-One years ago today the Today’s A New Day! writings started. As I continue walking through health issues, I encourage everyone to embrace the detours of life. ~OC

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Experiencing Peace

Today’s a new day! Along this journey called life, we all deal with fear. Fear can hit us during what we thought would be a routine doctors appointment. Fear can hit us when test result comes back with more questions than answers. Fear can hit us when we watch the news or scroll through social media. We have all experienced fear in our lives.

Back in 2003, one of my doctors called me early one morning and shared he needed to see me right away. Then he made the comment “Oh and make sure you bring your wife.” A little fear hit me at that moment. Later when the doctor shared I had a tumor, the fear grew a little deeper. Fear, worry and anxiety. My wife and I experienced all those feelings sitting in that doctor’s office.

A few weeks later a biopsy revealed the tumor was the size of golfball and was cancerous. Once again, fear, worry and anxiety smacked me in the face. Things seemed overwhelming at that point.

Then something amazing happened. As I laid in ICU hooked up to several machines, God took away the fear, worry and anxiety. Those feelings were replaced by peace, calmness and even joy. Yes, joy. What changed?

God reminded me of the week long fast I had done a year earlier during a missions trip. He revealed the reason I had fasted was to prepare me for this very moment. Peace flooded my room and heart at that moment. In that moment, I completely turned my health situation over to Jesus and trusted Him to walk me through my unknown future.

Even though I had been filled with fear, anxiety and worry, Jesus was right there with me. He shared hope, love and peace even as I was overwhelmed with so many different emotions. God never abandoned me in my time of need.

During that moment, I still had to deal with life as a cancer patient. But that unknown did not overwhelm me anymore. Jesus reminded me that He was bigger than any health issue I would ever face. I am thankful, I did not know my future would be full of more health issues, test, multiple doctors appointments and hospital stays. No, at that moment I was just filled with peace. A peace that has never left me.

Here I am in 2024, after overcoming so much, but still dealing with so many health issues. Fear and worry try to overwhelm me at times, but I am still experiencing that same peace and joy I experienced in that ICU room so many years ago. Knowing that Jesus is still bigger than anything life throws at me. Still living life with a thankful heart. ~OC

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The Journey

Today’s a new day! Cancer, Parkinson’s, Myasthenia Gravis, Gastroparesis Type 2 Diabetes (Steroid Induced) and Dementia. No person would ever want to be diagnosed with just one of these diseases. But ring the bell, chicken dinner, I have been diagnosed with all six. Thankfully, I have been cancer free for many years. But when faced with multiple diseases it does little good to sit around and complain about it. No, I have decided to run with it, embrace it and see where God takes this crazy beautiful health journey. ~OC

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Speaking in Tongues

Today’s a new day! This past weekend, I was watching a prayer gathering online, where I saw someone praying over a woman with cancer. The lady praying asked the woman dealing with cancer if she had the gift of speaking in tongues. The cancer warrior stated she did not. The woman praying then made the comment that maybe that’s the reason this lady fighting cancer had not experienced a healing. My heart broke. This is false teaching! You will not find this teaching anywhere in the Bible.

Sadly, I have been at gatherings like the one above and have seen many Christians manipulate people into speaking in tongues. They have people basically parrot what they’re hearing. This is wrong and definitely not from Jesus. He never did that. No where in scripture, do you ever read where Jesus told anyone to be healed as long as they spoke in tongues. I have been in numerous religious settings where everyone is speaking in tongues and there is no interpreter. That is not Biblical.

I have also been to religious meetings where it taught that speaking in tongues is evidence of the baptism of the Holy Spirit. Once again, the Bible does not support this. We do see in the Bible that sometimes when people received the Holy Spirit that they spoke in tongues (another language).  All believers have the indwelling of the Holy Spirit and are baptized with the Holy Spirit.  All, however, do not speak in tongues.

A point I want to make here is, I believe people have the gift of speaking in tongues. Just like some people have the gift of Serving, Healing, Teaching, Leadership, Evangelism, etc. But not everyone has all the gifts. And that’s okay.

Just like with speaking in tongues, we cannot coach or manipulate someone into having any of spiritual gifts unless the Holy Spirit gives them a particular gift. Some people have been blessed with multiple gifts. And that’s awesome!

Not all Christians need to speak in tongues and not all Christians will. Once again, that’s okay.

My heart is broken, when I see people who are hurting walk away from a religious gathering feeling like they did not measure up or they did not receive a healing because they did not speak in tongues. I believe God will deal with people who preach this false gospel in His own way.

I encourage every Christian to seek a personal and intimate relationship with God. Pursue your dreams and live your life to the fullest. Acknowledge God in whatever you do and he will show you the way you should go.

You do not need to speak in tongues to experience a more effective prayer life. The Bible says that if we pray according to God’s will, then he hears us and will meet our needs. Jesus can heal that person with cancer or some other health issue who does not speak in tongues, just as easily as He can decide to bring that person with cancer who does speak in tongues home to Heaven. There is never a requirement to speak in tongues to get your prayers answered or to experience salvation in Jesus.

So today, walk in the freedom of Jesus and watch Him move in your life. ~OC

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Beautiful Gift

Today’s a new day! In late 2002, I was diagnosed with several forms of crippling arthritis. I would spend nearly a year taking multiple experimental drugs to help fight the arthritis. Unfortunately, those medications did more damage than good. Fast forward to August 2003, I had a chest scan done after coughing up blood on my way home from work. That scan would change my life forever. A few weeks after the scan a biopsy would reveal that tumor sitting in my chest was cancerous. The results would change the way I live life forever. After having the tumor removed a short time later, I thought the worst was over. I had no idea that four years later I would be diagnosed with Young Onset Parkinson’s. Of course my symptoms had shown up years before, but I never paid any attention to them. I blew it off as stress or fatigue. Then a few short years later, I would be diagnosed with Myasthenia Gravis. Maybe I should have started playing the lottery. Then about eight years later, I would be diagnosed with Gastroparesis. What are the odds? Well, some on my medical team have shared I am one in two billion. Where’s that winning lottery ticket?

Over these past twenty-two years, I have learned, and continue to learn, about living with persistent pain, near-constant fatigue and constant unsteadiness. I stress living, though I am also learning about dying. We’re all, always, dying-while-living and living while dying. My experiences with these multiple health issues simply make me more aware of death’s relentless work and also, mercifully, makes me more attentive to life’s beautiful gifts. Among them are:

The amazing gift of conversations, laughter, tears, prayers, encouragement and amazing times with family and friends.

The beautiful gift of music and books.

The beautiful gift of memories from my running days.

The beautiful gift of a call or visit from friends.

The amazing gift of sunrises and sunsets.

The gift of a quiet morning before the battle of another day begins.

The amazing gift of experiencing healing in so many different ways.

The gift of experiencing the many blessings of God.

The beautiful gift of hearing God speak to my spirit.

The gift of a quiet evening on the balcony with my bride.

The beautiful gift of almost 25 years with my bride.

The amazing gift of continuing to make beautiful memories with my bride.

The gift of outliving all the predictions of my death.

The gift of knowing God has everything under control.

In the time I have left (I am taking on the challenge to outlive the current prognosis), I intend to live close to the veil, at the threshold, and at the feet of the God upon whom angels descend and ascend. I hope to say what I hear, describe what I see, and offer what I receive because it is good, hopeful and healing. Every day, I choose to be The Man Who Refuses to Die and embrace the beautiful gifts of life. ~OC

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Word for 2024

Today’s a new day! We have officially entered 2024. Happy New Year! As we celebrate a new year, I have been praying about what word God would give me for 2024.

While many are uneasy about the year ahead — whether that anxiety stems from family, health, finances issues or the political climate, I am going into the new year with anticipating and excitement. The word God has given me for 2024 is Passion.

As I reflect back on my running days, I attribute much of my success to being passionate about running. Putting in the daily training to be a successful runner was a grind. Most of my runs were filled with pain and discomfort. It would have been easy to give into the pain and give up. But running was not just a hobby for me. No, it was a passion and calling from God. As some of you know, God gave me a vision during surgery in 2003 to remove a cancerous tumor that He wanted me to start running marathons and sharing his love. As I shared earlier, the marathons and training were a grind, but the passion to share all God had done and was doing in my life gave me the desire to push through the pain.

I wholeheartedly believe to be successful in running and more importantly to be successful in life, we need to approach everything with a sense of passion.

I believe it’s difficult to be successful in this journey called life without enthusiasm, energy, dedication and a passion to achieve.

I pray in this new year, we choose to run after the things that are important in life with devotion and a sense of passion to help others and to make planet earth a better place for everyone.

As I continue to run this crazy beautiful health journey, I will stay the course and spread hope, love and encouragement to everyone God brings my way. I pray your 2024 is filled with peace, joy and passion. ~OC

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