A HANDPRINT ON MY HEART

A HANDPRINT ON MY HEART

When I found out my mom (Arlys) was diagnosed with Glioblastoma Multiforme (GBM) in April, I went through so many emotions knowing how much our lives would change from that point.  I knew the road would be a tough one and require inner strength I wasn’t sure I had.   GBM is the most common and deadliest malignant primary brain tumor in adults.  Standard treatment involves removing as much of the tumor as possible followed by radiation and oral chemotherapy.  If you qualify for a clinical trial it might increase your survival odds.  GBM doesn’t respond to traditional treatments very well leaving a staggering median survival rate of 15 months even with treatment. Even if you remove all of this tumor it isn’t a question of if  it will come back, it’s when will it come back. Not all glioblastomas have the same biologic abnormalities and some people live 3 months and some live 3 years.  My mom lived 4 months. It’s a really piercing statistic to digest.

After weeks of soul searching, my mom declined treatment.  This was a hard day.  It’s a decision that I supported but it was hard.

I celebrated getting to spend more time with my mom and appreciated every moment we had left together but it’s incredibly hard saying goodbye to the mom I knew before this horrible cancer took over her brain.

We said goodbye to my mother on August 17th but my grieving process started from the time my mom was diagnosed.   I remember saying “I love you” to my mom before her craniotomy and I grieved when she came out a different mom.  I grieved when she spent most of her day in a wheelchair.  I grieved when she missed birthday parties. I grieved when she wouldn’t be able to come back home. I grieved with every seizure she had. I grieved when she could no longer feed herself. I grieved when she could no longer speak. I grieved when I watched her take her last breath. I now grieve the moments she will miss.

My mom would often tell me to not cry over her and it would make me cry more.  I cried for many reasons including the thought of not having her around and for what she was going through.  I cried because I got to leave the nursing home and live life when she couldn’t. I cried because I wasn’t always a good daughter.  I needed her to know how much I loved her and how sorry I was for all the mistakes I made. We had our differences but my mom was a good person and we loved each other.

I know being sick is not how my mom would want to be remembered.  She was much more than the cancer that took her life.  My mom was the 9th born out of 10 siblings and was 67 years old. She was the most strong person I knew. She was the most selfless person.  She was an amazing cook and was so talented at making scarves and quilts.  When she retired a few years ago my mom had more time on her hands and I was becoming worried I wouldn’t have enough space in my closet for all the beautiful scarves she made. My mom had the greenest thumb and we used to joke that she would spit out a seed and create a plentiful garden from it.  She would get up and drive a few hours when a boyfriend broke your heart and take off a week to help out around the house when you broke an ankle. My mom loved her family and being a grandma. She loved to laugh.  She would do the dishes when you told her to sit down and rest and make a buffet of food when you came to visit.  She would make you text or call when you got home at age 43 and get a birthday card at least a week early every year.  She loved to give.  She was complete being needed.  She was a mom. She loved us to the moon and back.  “The death of any loved parent is an incalculable lasting blow.  Because no one ever loves you again like that.” – Brenda Ueland

There will be many firsts not having my mom around and it will be hard. I will hold onto the memories and enjoy the stories of times shared.

Here is a slideshow I created for my mom’s memorial service. Her life was cut short but she lived life to the fullest each day.

https://kaye-ness-photography.smartslides.com/arlys

GRATITUDE

The past four months have been very painful and there are days it took every ounce of me to get out of bed, shower, and exist. My new normal was un-welcomed but I have also learned a great deal about myself.  Survivor’s guilt is real and a painful process. I had to make the choice to live and continue my mom’s legacy.

I am so grateful to my co-workers/friends at Saint Luke’s for stepping up when I needed days off to be with my mom, fetching tissues when I had meltdowns at work, and just for being all-around awesome.

I am so thankful for my family and friends… your messages, cards, texts and calls helped lift my spirits. Some of you shared personal stories about your own experiences and you should know how much comfort they brought me. So many of you bought “Strong Like Arlys” t-shirts  (thank you Audrey Keuther for designing the t-shirt) to show your support and many contributed to the Go Fund Me campaign.  The number of you who left comments on Facebook to show your support was overwhelming.  I read every single one of them and the amount of love touched me.

To my best friend, Becca… I don’t deserve you. You are the best friend anyone could ask for and you have been there day and night for me when I needed you. You rallied to fundraise for my family, traveled with me to see my mom, helped with my mom’s service, and continue to amaze me with your generous heart.

I am so thankful to my neighbors who have extended offers to help mow my lawn and whatever else I needed. Thank you to my neighbor, Kate who listened and let me cry numerous times and really helped me through this process.

I am so grateful to the my mom’s therapy staff and especially Lisa who spent hours each week filling me in on my mom’s progress.  You are all incredibly special and made such a difference in lifting my mom’s spirit.

Thank you to Lindsey & Katie of Compassionate Care Hospice.  Your support and comfort the past few weeks were so welcomed.  Thank you for letting me call and text at all hours of the day to help give me peace of mind.

Thank you to my Aunt Ruby and Uncle Kent for opening up your home and hearts while visiting my mom.  Your home brought so much comfort and memories of when we used to visit growing up.  It’s always a nice bonus having your sweet furry friends around too.

Thank you to my aunt Kathy and uncle Junior for more than I can write in a book. You have offered an incredible amount of emotional support during a time that was and is equally as difficult for you. You opened your home on little notice and always welcomed us with hugs. You treated us like your own children. You checked on my mom every day and helped out wherever needed.

My sister (Kerri) and brother (Kevin)….I could have not made it through this without you. We were close before but became even stronger now.  My stepdad, uncle Junior, brother, sister and I surrounded my mom with love during her final moments on earth and it was incredibly special we could all be there. Family is everything.

A special thank you to my sister…. you are my rock.  Our near daily phone calls helped me and our many road trips to see mom were hard but special.  I can’t imagine my life without you.

Thank you to my better half, Scott. You often cleaned more, did errands more, tolerated more, and did everything more than me the past 4 months.  You stepped up when I couldn’t. Thank you for taking care of our furry children so I could stay with my mom.

To my stepdad, Marlin for spending every day at the nursing home with my mom.  You kept her company and helped her every single day. Your unconditional love and sacrifice for my mom was appreciated.  We know how hard this has been and will be moving forward.

I truly thank everyone for being there…. much love to you all!