Hi all ,
I wanted to send a quick update after Mikes latest Pet scan because so many of you have been praying and thinking of us and we are so grateful.
Mike and I went it Augusta last Wednesday for his routine scan and to see Dr. Kota.
We were so very grateful to receive good news and the simple yet powerful gift of more time.
The scan showed no areas of concern at this time and the Leukemia appears to be quiet and stable. He will continue the cocktail of three main medication- the new chemo pill ( Xospata) , Jakafi ( for GVHD) , and sirolimus ( an immune suppressant to help with the Gvhd as well). For now he will not have to have the chemo infusions he had been on. It most definitely makes us a little nervous to change treatments but we keep trusting his incredible doctors and are grateful for less appointments. He has been 9 months without a new spot appearing , we are so so thankful.
After processing the news we let out a sigh of relief and cheersed each other for the gift of a 4 more months together.
Throughout the day , I felt this immense feeling of gratitude growing inside that overwhelmed me. Gratitude for those people who have been put on our path to care for us during this horrific storm that hit our lives (almost 3 years ago) and ripple effected those we love the most, our family.
You see while we are able to celebrate, my dear friends Emily and John are suffering the indescribably painful effects of this destructive cat 5 storm of a disease , that goes from silent in the eye , to catastrophic in a matter of moments.
From one scan to the next.
I am as sad as I am joyful.
Kate bowler says it better. “Life is so beautiful. Life is so hard”
When I put Jake and Celia to bed that night , I shared the news with them , as they are getting older and more and more aware of life. And Jake asked simply, well can it come back? My fears spoken out loud through a tiny only 8 years old human.
So when I say we are grateful for four more months I don’t mean to sound dramatic or tragic, yet this is our true reality, and Mike and I have come to be immensely grateful for LIFE and PEOPLE and TIME because of it. The curse and blessing of cancer.
And I think that’s why on Wednesday , Ash Wednesday, I felt gratitude for people in an overwhelming way , the kind that brings you to tears. When ashes and the scary faces of death are constantly sitting on your shoulders , you see life through clear lenses of what is important and of value each and every day. Every breath is something to be grateful for.
I shared this on a blog post recently but is worth sharing again with you all.
When Emily’s mom arrived in Augusta to see her , she saw Dr Kota as well. She thanked him for all he has done to heal Emily physically and for the healing most importantly he does for her soul.
He responded that “ I am only a vessel.”
On Wednesday I felt tremendous gratitude for the humble vessels in our life. Who are doing everything they can to serve and care for us and make our lives easier.
Kota. His team, Dr Jillella, Dr Kolhe , Dr Estes , Toni , Jane , our nurse Rebecca. All Vessels through out the worrisome day.
Of course I looked up the definition of vessels and found many .
Blood or lymph vessels - tubes that carry blood , lymph, fluid through out the body. A funny , all to familiar and pretty important one to Leukemia patients.
For all you chefs ,a vessel might be an open container used in the kitchen.
A nautical vessel, a ship that carries important goods, people, to a port.7
Mike informed me he didn’t agree to the term vessel for Kota.
He was a damn Port, dock, something that wasn’t going anywhere! A permanent fixture 😊
I think the vessel Kota was referring to was a vessel from a greater power or being. For me , that would be God.
A vessel sent from above to help keep our faith alive , in the most difficult days where faith can have the tendency to shrink down to the mustard seed.
I believe without a doubt the way we survive the storms of life is through the vessels of people God puts on our path. This is his Grace to us.
We have to stop looking down for these connections through our phones. And look up at the people in front of you, they are there, and they have been placed on your path for a reason . Don’t miss them because you are afraid of grief and sadness a moment may bring.
These vessels of humans aGive you hope. Enough light for just the very next step. And on scan days they are needed even more readily 😬
And so I left Augusta inspired to write down and name all the vessels in our lives and thank them. It will take me years to write about each one of you. But I am determined.
A reminder that vessels are everywhere, sharing love and kindness out of the goodness of their hearts, is found in a guy named Anoop, our pharmacist at CVS ( our second home). I drive through the drive through -thank God there is one so I can avoid spending 25 dollars on candy bribes with three children. My car is full with ear infected kids, a geriatric dog needing steroid eye drops, and a puppy. Anoop has already called the pediatrician who forgot to call in the prescription, reminded me of the coupon for the 150 dollar eye drops for Emma and hands me a goody bag of steroid cream and pills for Mike he got together for me. I thank him for everything. My mom reminded me he too is a vessel. Human vessels might even be a stranger who cares for you like family. Anoop was a vessel when Mike and him were just strangers on this journey 3 years ago.
I do challenge you to try living four months to four months, or like my brave friend Emily day to day. How would you live your days differently? Don’t wait until it’s your reality. As I type this , it’s 3am and our nightly visitor has arrived with his blanky. Guess that’s my cue to pull him in , hug him tight and go back to sleep before he rules another day 😜🤗
Thank you from the depth of my soul for loving us and our family. Thank you for being our vessels.
" If it wasn't for the downside, having cancer would be the best thing and everyone would want it.Â The disease teaches you what's important , and and as it turns out its the things you already have. your kids. your mate. your home. a good meal. a good friend. a good day. but here's my favorite quote from the book , by roger Ebert, who has terrible , face -eating kind of cancer: 'I believe that if, at the end of it all, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier that is about the best we can do. to make others less happy is a crime, to make ourselves unhappy is where all crime starts. we must try to contribute joy to the world, that is true no matter what our problems , our health, our circumstance. we must try"
" the marrowÂ of the bones and the marrow of the self are quite similar . Deep down in the center of the bones are stem cells that keep another person alive, perhaps not forever, but for a time, in the case of my sister, for what she called the best year of her life. Deep in the center of the self are the soul cells of who you really are.Dig for them, believe in them, and offer them to another person, and you can heal each other's hearts and keep love alive forever."
Quotes from - “Marrow” by Elizabeth Lesser