Denise's Story

dbrock
Posts:161

Operations Director, GRACE

 

Hi there -- 

Image
montalcino

I am Denise Brock - the Operations Director for GRACE, the Global Resource for Advancing Cancer Education.  I began working with Jack West in 2009, 1 year after my best friend was diagnosed with NSCLC and 1 year before she passed away from the disease. I met Jack through her, and I became part of this organization because of her.  

In 2008 Melissa was turning 40, and for her 40th birthday, she rented out a villa in Montalcino, Italy.  

Myself, my husband and my 6-year-old daughter met up with her and her husband, her 5-year-old daughter, her parents, and a smattering of friends to travel, eat, drink, discover, and celebrate,...  

Image
Group Italy

A day or so into it she lost feeling in her arm.  She had a huge lump - that sprung up.  It seemed to go down, after discussion, massage, and rest.  But it hung over all of us like a small curious black cloud.  Regardless, it was an amazing trip. 

We returned earlier than they did to our homes, and she called me from Italy and asked me to make her a doctor's appointment for the day after she returned.  Our terrible journey started there. 

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

JanineT GRACE …
Posts: 611
GRACE Community Outreach Team

Denise, reading this I'm struck for the first time by the juxtaposition of the wonderful trip and the devastating onset of Melissa's cancer. 

 

I know that Melissa's life was better with you and Dr. West's involvement in her care.  And another juxtaposition, I'm so so sorry Melissa, you and your extended family went through this yet unbelievably grateful that you met Jack.  I'm not sure who I would be today without GRACE. 

 

Thank you Denise for sharing. 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

dbrock
Posts: 161

Operations Director, GRACE

 

Image
me and melissa

So Melissa and I met through our husbands -- college friends. We clicked immediately -- my sister.  If soulmates can be a friend, then she was my soulmate.  We were like puzzle pieces, we turned into kids playing when we were together. (Seriously - we held hands and ran through puddles in our 30s.  She was my maid of honor and I was her matron of honor.)  The level of comfort was - so strangely fantastic, right from the beginning. 

 

Melissa's mom had passed away when she was about 18 months old, just a baby.  Leaving her dad a single dad, who married again sometime around when Meliss was 7? 8? 9? maybe older.  Her mom died of a 'brain tumor'? of some kind.  (Could it have been brain mets? in the late 1960s did they know to screen for cancer in a 20-something vivacious young mother?)  I think it always haunted her.  Was she next?

 

So Melissa went to her doctor when she got home.  After a battery of tests, she called me saying "We need to hope for a blood cancer".  What in the world was I supposed to do with that information?  My world was crumbling, but not nearly as much as hers was.  

Melissa did the first PSA about GRACE.  This clip still brings me tears.  I had become a caregiver.

 

Caregivers are RAZOR FOCUSED on anything they can do to help, make a life better, heal, support, and grasp at anything that can possibly turn the boat around, and head away from the looming rocky cliffs.  At the same time they are providing comfort and support and positivity.  Caregivers lose themselves in the lives of their loved ones.  Caregivers can't see beyond what is right in front of them, and the room is so very dark, and there is an underlying fear of what life might be like when the light right in front of them goes out.  It is an empty, dark, abyss.  Meanwhile, caregivers still have children, homes, jobs, pets, and a life that moves along.  You are internally paralyzed, outwardly caregiving, and meanwhile, your 'regular' life continues. 

 

How in the world can this all coexist? 

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

JanineT GRACE …
Posts: 611
GRACE Community Outreach Team

I love how you describe your relationship Denise, "Seriously - we held hands and ran through puddles in our 30s."  "soulmates"

 

"How in the world can this all coexist?"  That, it seems, is universal.  My dad died of cancer in 1970, I was 11 and I had a boyfriend at 18 who died.  I remember wondering how on earth everything else stayed the same as if the world hadn't just crumbled. 

 

When you're in the middle of being that caregiver it's hard to recognize you're functioning at a different cognitive, emotional and physical level.  It's why putting together your own support network is so important.  Let your friends and family care for you, the caregiver, especially if your the type of person who normally resists help. 

 

Just Say Yes to those around you who want to help.  It's a habit that can be fostered but you have to stay aware of your existing habit of saying, "no thank you".  Caregivers need caregivers. 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

dbrock
Posts: 161

Operations Director, GRACE

 

Janine -- I know how my world felt, but how is your world different?  - thankfully your husband is 10 years out from treatment.  But I think the wondering would never leave.  How has your life changed being a caregiver for so long? 

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

JanineT GRACE …
Posts: 611
GRACE Community Outreach Team

Denise, that's a good question.  I want to post my story soon.  There are indeed many facets of his 14 year journey.

The first thing that settled in my thoughts, after the whirlwind your question caused, is how my concept of "hope" changed so dramatically during his days in treatment.  It was an epiphany, a sudden understanding of how this concept could help hold your nerve.  It holds so much more power than I had previously thought.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.