Glenn’s Story

Site created on November 10, 2018

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. 

On September 13, 2018, after having surgery to remove what was thought to be inflamed adenoids, I was diagnosed with Non-Hodgkin Lymphoma.  I  quickly learned that there are categories of Non-Hodgkin Lymphoma, and that I have Mantle Cell (blastoid variant) Lymphoma.  

As our lives turned upside down,  Glenn and I (with the help of family and friends, especially Kass's brother, Kevin) found Dr Michael Wang at MD Anderson in Houston, Texas.  He is one of the top researchers and physicians in the U.S. treating patients with this rare type of lymphoma.  
Within two weeks of being diagnosed, Glenn and I were on our way to MD Anderson, and after 16 days of testing (we thought we were staying for 4 days!), I was accepted into the WINDOW clinical trial at MD Anderson.   This 2 phase trial involves use of two immunotherapy drugs (Ibrutinib and Rituxan) in Phase 1 of the treatment, followed in Phase 2 by traditional chemotherapy agents.  During Phase 2, I'll be an in-patient at MD Anderson for 1 week each month for 4 months.
 
This clinical trial can last from 9-24 months depending on my response to treatment.  Per protocol, all of the treatment must take place at MD Anderson. 


This is how the the story begins......

Newest Update

Journal entry by Kass Flaig

When I was working as a home health nurse, I had the honor of caring for hundreds of people. Many left marks on my heart that I am certain I will never forget. One of these was a young woman, Nellie, who was in the midst of treatment for Stage IV Ovarian Cancer.   Nellie was a professor at the local university and was being assisted in her care needs by many family, members,  but mainly by her daughter, Joanne.  Joanne was taking time off from her studies abroad where she was preparing to enter medical school.

One day when I was waiting for Nellie to finish her breakfast in another room, Joanne whispered to me that she had something to show me.  The excitement in Joanne's voice and in her sprinting gait towards the closet was impressionable.  "Come over here," she said quietly, motioning me to follow her and to look down towards a box on the floor.  Joanne quickly opened the box and removed a pair of bright pink high-top CONVERSE tennis shoes.  

"I've been wanting these shoes for a long time and I finally decided to splurge and buy them for myself". Joanne held the shoes up close to her face as if cuddling a puppy and continued her story by telling me that although she purchased the shoes, she did not plan to wear them until her mother was feeling better.  She elaborated by sharing that "in our culture, it is not honorable to be happy about something when someone in your family is suffering."    

  When I received the news of my PET scan results today, it was Joannes's postponement of her own joy (in the wearing of the pink shoes) to honor the difficulty her mother was experiencing that flooded my mind.  On top of the pandemic and the war that is causing the world to suffer,  I currently have many people close in my life who are in the midst of treatment for active cancer. I also have a dear friend who died of COVID this month, and I have been feeling great sadness about his death and for his family.  Not too long after jumping up for joy at reading the "no evidence of cancer" on my PET scan report, I sat in my car remembering the struggles that so many around me are experiencing.  Like Joanne honoring her mother,  how could I celebrate at a time of such great sadness?

I continued to contemplate as I made my way home from the diagnostic center where I had picked up my PET scan results.  I thought of the pink shoes that made Joanne happy but that she could not directly experience. While I am not an expert on the cultural aspect of her decision, and I do respect the beliefs that all people hold for themselves,  it struck me that if Joanne could have allowed herself to wear the pink shoes while she cared for Nellie, that perhaps the great joy in Joanne's heart might have also been felt by her mother leading to (at least for a few moments) a boost in Nellie's immune system. 

I realize that this reimagining of the story of the pink shoes may feel like I am discounting the culture of Joanne and Nellie (I truly mean no disrespect), yet it was what I needed to do to help me fully experience the good news that I have received today.   I will continue to realize the struggles and challenges currently facing my friends and the world,  but  I will also remain smiling and exuding the joy that I am feeling for being alive and being cancer-free because it is in this state of gratitude that I can do my best in fulfilling my purpose in this world-  to love and help others. 

 

Thank you for taking the time to read my post. 

Love to all of you. 

 

 

 

 

 

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