Sunday, September 13, 2015

To Only Know

I've taken the task of writing this blog to both inform, advocate, and share our journey through both cancer and Type One Diabetes. I've taken the time to be honest and kind while dealing in a world of raw emotion. I've taken the responsibility of fighting this ominous battle, whether I "feel like it" or not.

That being said, this past week evolved into a monster of a situation. 

To only know what cancer can do - is powerful 
To only know the sickness and challenges that flood those who walk cancer - is even more powerful.
To only know what you have in life - is the most powerful.

(Please excuse my face: I'm not photogenic, when I'm sick of course)

I was admitted last Wednesday (only two days after spending five in for inpatient chemo) for mucositis, vomiting, and dehydration. What was to be a two-day stay turned quickly into an easy seven. In my view, the mucositis was a hefty enough blow for me. My white counts and neutrophils (immune system) quickly began to tank. Frankly, this is how you do not want a sick stay to go. Within two days, the colitis took the spotlight. Between high fevers, urinary retention, and other various problems, the colitis was masked and showing up as a possible narcotic side effect. Due to the fevers, I was immediately put on antibiotics. This proved to be helpful once we found that my main issue was the colitis, due to the fact it was started by infection in the colon walls. In the end, they upped the antibiotics and finally got the pain in control. Though they wanted me to stay longer, I could not (mentally) bear to be there. They let me go home as long as I will hook myself up for IV antibiotics every day. (This is not so much of a problem since I love being my own nurse)

(My lovely set up for IV antibiotics. Looks cool- tastes terrible!)

So why expound on this lovely "story," "scenario," or "event?"

Here's my point: if everyone truly knew what they had, you would live life differently!

I didn't understand it before cancer. I don't expect anyone to get it. That is unless I can accurately portray the reality of a life-altering disease; if I can accurately assist you in seeing what life is like living every day in the shadow of death.

The colitis is worse than even I thought. In the words of my medical team, it was a "life-threatening complication of chemotherapy".
This is my reality. This is what I know.

I know you are smart. (I mean hey, you read this blog - big bonus points!) I know many of you have lived longer and have a better grip on what life is like.

However, the vast majority (if not everyone) do not know what it's like to live with metastatic Ewing's Sarcoma. To live with numerous side effects. To live on the edge.
After being confined to my room, the return to "normality" means so much more! Waking up in my own bed, breathing fresh air, and even appearing somewhat normal helps me realize the worth of the little things. With or without cancer life is hard. In my case, enjoying every minute of life helps me heal and shows me what is truly valuable.

I this blog to both enlighten and inspire.
This isn't supposed to be a sad post. . . just needed to be an enlightening one! ;)

(Jordyn and I lighting up P4. Nothing like a good bit of neon!)


  1. Thank you Caleb. Your words were inspiring, enlightening and a challenge to my own life. Thank you for being courageous enough to write out this journey. We love you and treasure you dearly!

  2. What a true post, Caleb. When you've walked through the valley of the shadow of death you appreciate life and the Shepherd who walks with us on a completely different level. We continue to pray for you and your family! {{Hugs}} as you journey through this newest complication. Our hearts are with you!

  3. Love and prayers from the Rains! 💜
    Glad you are now home. What a struggle you are facing daily. Praying for extra grace and strength!

  4. We can't even imagine what you are going through. Definitely continuing to lift you and your family up before the Lord. We are praying for your life to be spared for the greater glory to the Lord; that you will be used to comfort others because of how you have been comforted. We are praying for comfort, grace, strength, and healing for you. May His everlasting arms hold you up. Love from Ed Wynn and family!

  5. How do you spell Jordyn's last name again? Oh yes..ask Ben! HAHAHAHAHAHA Love you and thank your nurses for me for taking such great care of you!

  6. Thank you for writing this blog! I always look forward to reading it! I hope you are having a great day!!! Love you! we are praying for you and your family!


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