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Walking with Strength, Courage and Hope for the Cure to Rare Sarcoma Cancers
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Amanda’s Story of a Caretaker

amandaAmanda Lenvin is not only one of the biggest supporters of the Wendy Walk, she is also one of the strongest people around.  Cancer has impacted her life in many ways, first with the loss of her father in 2012 and now caring for her mother who was recently diagnosed.  Read Amanda’s incredible story of strength and how she cares for her family.

What is the biggest impact cancer has had on your life?

This question is incredibly complex and difficult to answer because cancer has impacted me in ways that extends beyond words. Cancer has this pervasive way of making me feel like a speck in the universe with absolutely no control. It is incredibly isolating and lonely. My father was diagnosed with a choroidal melanoma (a very rare eye cancer) in 2010, which metastasized and ultimately led to his death in 2012. My mother was recently diagnosed with stage IV gallbladder cancer and given a very poor prognosis for survival. So I guess simply put, cancer killed my father and is threatening to kill my mother.

What is the hardest part about care taking?

Trying to cope with the unknown and not losing your identity have to be the two hardest parts about being a caretaker. Confronting uncertainty of any kind is probably the most uncomfortable feeling in the world, let alone when it surrounds the mortality of someone you love. It can feel like you are riding a rollercoaster blindfolded. You have absolutely no idea what is around the corner, good or bad, and that can result in a pretty constant level of panic.

It is also very easy to lose your identity when you are a caretaker since you are assuming completely new and different responsibilities. Taking care of yourself and taking care of someone else becomes a very blurry line. This has been one of my greatest challenges the past few years. When you are going through the day-to-day with someone affected by cancer, their disease can quickly feel like your own. I’ve learned that self-care is critical to being the best caretaker possible.

What do you wish most for your mom/dad/friend/relative?

Well ultimately my biggest wish is that my mom defies all the odds and beats her disease. But during this journey I want her to open her eyes to all the love that surrounds her and take ownership of it. She is constantly sharing her surprise that people care so much about what she is going through. To me, this conveys her lack of awareness of how incredible she is. When she is no longer surprised by the love and generosity that surrounds her, I think she will have recognized how deserving she is…and that would be beautiful!

What do you feel is your biggest responsibility?

I feel my biggest responsibility is to stay emotionally connected and present with my mom so that she does not feel alone. This means laughing with her, being happy with her and a lot of times this means being sad and scared with her. To me this is more important than supplying endless hope because frankly, that would be ingenuous on my part. I did that with my dad and it is one of my biggest regrets. I realized that responding to his expression of helplessness, hopelessness and fear with endless optimism completely invalidated his feelings and kept him isolated. It is my duty to supply strength and hope when my mom is running low, but I believe my biggest responsibility is to hold her hand and walk with her through the dark times.

What makes you laugh during the process?

Finding the ridiculous positives in cancer keeps us laughing. Losing her hair also means no more plucking those annoying chin hairs! Old school SNL skits. Funny animal videos on youtube. Ellen Degeneres.

What cheers up your mom/dad/friend/relative?

Normalcy cheers up my mom. She loves having her friends over for bridge or going to a social activity. Anything that keeps her busy and distracts her from medical symptoms always puts her in a good mood. Her absolute favorite is spending time in Palm Springs. The desert brings her immense peace and joy.

What is your favorite activity to do together?

We love snuggling in her bed together and going through photos and baby videos. It is incredibly nostalgic and brings back so many wonderful memories. Having dinner together on tray tables and watching the news has become a really comforting activity we love to share.

 

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3 thoughts on “Amanda’s Story of a Caretaker

Bill Taub says:

I have known your mother for almost 15 years but it is only through this journey have I come to know you. She is indeed special — but now I see so are you. You come by it honestly. Watching the two of you go through this journey together gives me a template of how to travel the road with dignity and grace and getting the most out of every minute of life. Thank you both for the past 15 years and hopefully the next…

Shana says:

Oh Amanda, So beautifully written and spot on in terms of your perspective. Life is really about being content with the simple and mundane. In reality, the simple and mundane are quite special; particularly when they are threatened or taken away. Each moment of laughter, tear drop that falls, fist that is clenched, giggle that brings about a smile is indicative of a life lived to the fullest. To bring about said emotions we must show up to the starting line of life on each day we are given. Even in the face of pain i have learned that we can experience joy and be thankful for what is in full view at this very moment. Thank you for reminding me to give pause and take notice of this very moment and in this moment i am thankful to be around the people i love. once i post this then i will hug the man that i love and call my sister and friends to tell them how much i love them.

Leslie Bayer says:

this is so beautiful – I can’t wait to meet you Amanda in April. best, Leslie

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