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Be Raw. (and recovery update)

Earlier this year (pre TIL treatment) I was at the grocery store with my kids and we were checking out. The bagger said, “I am sorry and shouldn’t ask but what’s wrong with your eye?” In his defense my ‘fake’ eye was extra irritated and red so I didn’t mine the question but it caught me completely off guard. So off guard, I responded, “oh it’s just allergies, it’s fine”. The kids looked at me strange but said nothing until we were outside.

Once outside, they unleashed on me. “Mom, why did you lie? Why did you say that?” Caught off guard by my kids response I said I wanted to protect the poor boy and didn’t feel like getting into my personal life. Their response was, well, you shouldn’t lie and you should just educate the boy and say you have eye cancer and your eye is fake.

I was then caught off guard again that my comment made them so mad, sad and disappointed in me.

Here I have been preaching it’s ok to be vulnerable, be raw and we need to educate on this horrible disease and I failed them in that moment.

Later that night we were playing a game around the dinner table – asking each other questions and the question came up. Is it ok to lie and when. At that time, they all responded- well, I guess it’s ok to lie at the grocery store, lol. We all laughed but what a reminder my kids gave back to me.

It’s quite an adventure raising kids at all times but throw in some of ‘our’ reality it makes it even more adventurous. It’s pretty cool when the kids do the reminding and teaching of how to live life better.

I plan to continue to let my kids lead the way and the plan is to keep being raw.

As I am now bald with hair starting to grow back but I plan to rock the baldness and I guess all the awkward moments and haircuts along the way. The kids are cool with it, don’t want me to fake our reality or my appearance and well – I guess I am totally cool with it too then. (Cool with it AFTER I have yelled, screamed, cried, completely lost my shit with so much sadness and fear – but picked my self up and then finally cool with it)

So…as hard as it’s been losing an eye, now losing my hair and going through a treatment from hell – I am going to follow my new favorite quote, thanks Natasha, my dear colleague and friend, for finding this for me.

“Be Raw. Be Open. Be Fucking Real. Because the last thing this world needs is more fake ass shit.”

Love to all – Be Raw.


Me update: lots of ups and downs the past few months with treatment side effects from the chemo and TIL but blessed for my huge care team of experts in their respective fields. The human body (physically and emotionally) is quite fascinating and I never know what and how I’ll feel each day but at the end of it I always feel so blessed. Paul and I head back to Pittsburgh in a few weeks for scans and next step conversations. Praying for no new Fers and current Fers are stable and showing signs of dying. It’s been a rough journey and learning to find ‘ME’ along the way but continuing to be so humbled and blessed by the outpour of continuous love and support.

Exciting news – Learning TIL treatment is being used for many other cancers with promising success. Many oncologist are not aware of this option and the opportunities available for their patients. I am hopeful to learn about more opportunities to spread awareness. Stay tuned.

Lastly – May is Melanoma Awareness Month – please schedule your yearly checks. Melanoma can be found anywhere on the body – skin, eyes, and can occur in any mucous membrane of the body too.

FU Melanoma

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