Michael’s Story

Site created on January 29, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Michael McCauley


The Questions of My Heart 

Could this be the last time that I look up at the stars?



Will I ever meet the one who knows them all by name?



Will I ever find the place in my heart that feels so far?



Will I ever find a way to be free from all the shame?



Clear me of my scars.

Take me some place new.

Make me whole again.

Tell me what to do.



I will follow you.

I will follow you.


I will wait until you want me to.


I will wait,


and I will follow you.



Could this be the last time that I look into your eyes?



If I’m the one that has to go, why do I feel this grief?



Will I find the answers of what it truly means to die?



Will you keep each other close, so I can dream of your relief?



Is anything really ours?

Help me see it through.

Take care of my friends.

Help me find the clues. 



I will follow you.


I will follow you.

I will wait until you want me too.


I will wait,


and I will follow you.



I only have one regret.

I wish I let my heart be free.


So I could calm the sea inside of me


and pacify the captain of my soul


to make my heart completely full.


I wish I had the courage to share,


how I truly felt for you.


———————————————————


———————————————————

Updates


I received a phone call from my doctor in mid-October with difficult news that I had relapsed. The results of the latest bone marrow biopsy revealed that the cancer had come back rather soon after transplant. The number of infant cells (blasts) was also higher than the number measured back in January. This means that the cancer is rather aggressive and the MDS has evolved into Acute Myeloid Leukemia (AML).



I thought I had already endured the hardest of times, but I guess I still have a lot to learn from this challenge. Things are more complicated now given the rarity of my situation. Since there is no textbook solution for my exact case, the treatment is technically experimental. Medicine is more than science, it is also an art.



I started chemotherapy again on October 23rd, a few days after I had been admitted to Hopkins with a fever. Since I already had a room, we decide to begin the treatment once my fever subsided. The plan was seven days of an IV chemo (similar to the drug I took from February - March), in addition to twenty eight days of a chemo pill. This would be one round. The number of rounds is unknown at this point. The final day of the IV chemo happened to fall on my birthday. It was very difficult to hear everyone say ‘happy birthday’ when I felt no happiness.



I’ve had to let go of a lot this past year and a half. I’ve learned that letting go only gets easier when the things you want to let go of start to feel small in comparison to bigger things in life. What are the bigger things in your life? Are they what you want them to be?



When I lost my hair, it felt big at the time, but I got over it pretty quickly. The very first day I felt comfortable being in public without a hat, an itchy, red rash appeared that would end up covering seventy percent of my body. This rash, which was thought to be Graft versus Host Disease (GvHD), crushed my ego and kept me out of the sun for over two months. The rash was much harder for me than the hair loss, and it made the hair loss feel so very small. When I heard the news about the relapse, I could care less about the rash because I could feel the tenderness of my uncertain future. Many other things became so incredibly small the moment I starting contemplating death.



On the day I heard the news, I did not feel the need to cry until I told my parents, and then my friends. A few days later, while I was sitting in the doctors office, hearing all the complexities, variables, and difficulties of the circumstances, I started grieving, surprisingly not for my myself, but for: 



my mom - her teary brown eyes resembling those of an innocent child who just fell down and scraped their knee.



my dad - yearning to hear a single answer that could provide some hope while none of us dared to ask the unasked and unanswerable question.



other loved ones - every one of them hurting in some way, and in need of love.



I started to drift off into thought while my parents continued asking the doctor questions. I swayed back and forth in between two powerful emotions: the grief I felt for my loved ones, realizing that I would no longer be able to help them with their pain; and a hopelessness that brought about an unexpected calm.



We left the doctors office speechless, because it was not a time for words. When we got to the car, I pulled my parents close and told them that we needed to let it all out. We immediately began crying together before we got in the car. I didn’t want them to be ‘strong’ for me anymore as I don’t want anyone to be ‘strong’ for me now. I knew we had to release our emotions because repressing the sadness would only cause us more harm down the road. It takes energy to repress an emotion. Letting emotions flow naturally allows us to live more with ease, and allocate valuable energy elsewhere.



When I felt hopeless, I tried to be the nicest, kindest person in the entire world. I tried to be perfect. I wanted to spend as much time with my family and friends as possible, and leave them only with wonderful memories. However, the second I felt an ounce of hope, I realized that this was not a sustainable plan. I was burning energy at an extremely fast rate. I needed to start conserving my energy, so I turned down the notch. I liked who I was when I felt hopeless. I was living exactly how I always wanted to live, but it was not sustainable at all. Now I wonder if I could ever achieve that level of righteousness and find a way to sustain it. Is that even possible or would burnout be inevitable? 



My future may feel more uncertain than usual, but we are all mortal. Whether I am given one more month or one hundred years, my goal will always be to become a more compassionate and loving person by seeking truth. 


——————————————————————————————————————————


Inner Flow to Know


Criteria, there's none to meet. Hysteria of the mass makes things disappear fast like snow around a spring creek. Water flows down to the bottom from the peak. Roots soak up the leak and trees grow strong, nourishing the branches that the leaves grow on, to be eaten by insects that live where they belong, feeding the birds so they can sing their song, after sharing the air that we all breathe in. An interconnected nature of everything you believe in.



Time goes by and new things are gone at the blink of an eye. The season’s harvest quickly turns from seed to rye, then whiskey in my, glass that’s dry, then into my body to skew my mind, so I can forget what it took to make the supply.



Time flies. Babies cry. People die. Life comes. Death follows. The body turns to dust. The body's hollow. The soul lives on. The earth swallows - those that wallow in the things we all know only bring sorrow. 



Tomorrow is a day that never comes. Inner is where happiness comes from. Rock collections, car inspections, natural selection, we all seek perfection, but we're just neglecting, that we are expecting, our lives to be happy and fun, without us reflecting on what we have done.



This may not be romantic but I'm in some kind of mood. If love's what you want, seek truth in solitude. 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Michael Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Michael by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top