In spite of it all

May 4, 2018

I  have had somewhat of a writers block - or probably just a blocking of memories and emotions I haven’t wanted to feel or write about lately as we approach the 2 year mark of Mike’s diagnosis. On one hand , I can hardly believe it’s been that long and I am so grateful for everyday we have had together these last two years ( well maybe not every moment of everyday 😜). And on the other hand the grief and emotions are still painful and overwhelming ,that stir around my remembering our life before that dreaded phone call where our life as we knew it changed forever. 

 

Not sure if it was mikes driving in stop and go traffic , the coffee on an empty stomach , or the thought of going back to Emory midtown that made me feel like I was going to puke the entire ride to mikes appt this morning. He was nice and let me ride with the air on and windows down :) 

 

Mike had a follow up appt with an ENT and a scan of his sinuses. But for some reason the memories of Emory midtown - where this journey  began 2 years ago this week continues to make me feel sick at my stomach. 

 

We wandered around lost going from one department to the next , from one set of elevators to the next , until Mike said he said he was leaving if this final lab we ended up in was wrong. Yikes - was praying we got it right this time 😉

 

Strangely enough , it was the correct place , yay! But it was also the first lab we sat in where everything began almost 2 years ago to the day . Mike hardly remembered but I can still remember sitting in the chairs with his 24 hour urine jug sitting at his feet. I remember him texting a picture of the cooler to family. Trying to make some humor in what still seems to be the darkest day we have experienced. 

 

We were newbies at this. I tried to stare at my phone playing whirly  word  but could hardly focus trying to fight back my own urge to throw up any given moment. 

That day might have been the longest ever. 

 

We ended up downstairs in the radiology department for his very first bone biopsy. Wow - what a pro he is now !💪

I think he was the last patient to be seen that evening , we had waited so long that My dad and Wes came to be with me even though I said I was fine , thank goodness they didn’t listen. 

 

They gave him some really good drugs that night and I remember thinking it was the first time he seemed like he was not in pain in months. So I was grateful for his drunk self that I drove home,I know that was Gods grace.

 

This began the journey.Two days later on May 5th  we received the call that it was either Leukemia or Lymphoma. 

 

And one week later we met our main man Kota in his office at the Winship center on Clifton Rd

 

I remember staring at the curtains in the exam room waiting to meet our doctor for the first time, with so much anxiety in my body I could hardly sit still. But the curtains read the word hope over and over , I stared and took a picture. I focused on “the Hope”Penny had already mentioned to me earlier that week. 

I sent the picture of the curtains to our family. Praying that maybe they would confirm that we were in the right place where we felt so lost. Looking back - now I see clearly the fog we were walking through. 

 

I will always remember our first visit with Kota. He came in , calm, smiling, and full of hope. He was the light we had needed to see. The light at then end of the dark tunnel we had been driving through the past month. 

 

He shared that Leukemia is curable and that everything was going to be ok. 

 

Words we needed to hear that morning. 

 

He also nonchalantly said , “so we will admit you to the hospital today if that’s ok with your schedule- for about a 20 day stay. “ 

Like we had something more important to be doing 😜. (Well take care of a 5 month old , might have been up there )

 

But looking back, knowing the relationship we have now , this calm in the storm he represents is what we love about him the most, and is what has given us the Hope to keep going despite obstacles and uncertainty. He continues to be the one who keeps our souls and minds calm , when the waters feel out of control.

 

We left his office and Mike had to have more labs. On the way to the lab we happened to run into a dear friend in the lobby of what now feels like home.

 

Standing there with her I wondered if we could finally  share our burden. I remember Mike just shrugging his shoulder at Sinead and the words , “ Well , I have Leukemia. “ came flowing out like gushing water from a damn that had finally broken free. 

 

And just like that , the weight was off our shoulders . The secret was out  and I think we felt a little less heavy with fear and more heavy with hope. It’s freeing to share the truth and not carry the burden alone. We learned that well that day. We could put the fearful  past weeks behind us and start this search for hope . 

 

There is no greater agony than bearing an untold story inside you. 

    Maya Angelou 

 

I sat today in my fight like mike shirt. Boy did we have no idea the ride we were about to go on. The ride and burden we would share with you all and that you all would help us carry. And  although there are many days that I still feel just as weak as I did that day two years ago. The difference two years later is that I now know what it means to have hope. To keep going despite it all. I know that God does not want us living in the past but only moving forward in Hope. I now know and believe in God more than I ever thought I did before. 

 

This journey to find hope , not give up on hope , discover deep love , and faith is the gift given to us - on this life on the other side of that devastating phone call . 

 

Do I still wish I had never had to answer that call? Yes. Do I wish we could have learned these lessons some other way ? Of course. But I don’t believe these lessons are  learned with out suffering.

 

Do I at least wish it was me instead of him ? Everyday. However , Mike said something to me recently that I feel is so powerful in describing what life is like on the other side of the call for him. 

 

He said - “ if this is the only way I would have met Kota in my life , I would do it again.”

 

 (I told him that was still up for debate for me 😉) 

 

But with as much heartache as that phone call has caused. We have been given the gift of  a life with deep meaning and love. And in the end , that might just out weigh the suffering. 

 

On my birthday morning this year I read a devotion sent to my that morning by Richard Rhor. My birthday , April 4th, shares the anniversary of the assignation of MLK JR. Uplifting I know 🙃 ! However this devotion sent me this powerful quote by him that has given me hope each day since I read it. 

 

 

If you lose hope, somehow you lose that vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of all. And so today I still have a dream. —Martin Luther King, Jr. 

 

Mike had a Pet scan Last week. We are grateful for more good news. At this time the Leukemia continues to seem to be in hiding and is being kept at bay from the two chemo shots  he has 3 times a month , the new chemo(ish) pill Ibrutinib , and his ever impressive amount of GVHD. He’s gained super power ability  to turn his hands into alligator skin:)

 

Kota continues to give us “cautionary good news “ for some while. I sometimes struggle with that. But I am striving  to live and fight like Mike. He takes one single day at a time and does not worry about days to come (or live in the past) I might even say he is better at me than that even with all the meditation practice I supposedly do 🤣. 

  Aren’t we all suppose to live that way. Just one day , one step, one breath at a time. 

 

He started another series of chemo yesterday. 

The other major concern continues to be his lungs. The scan showed more inflammation than the last. 

If you are a praying person - please pray for his lungs. Pray for the perfect amount of GVHD that will keep the Leukemia at bay and not attack his lungs or other organs. It is truly an everyday battle. 

We are so grateful for you prayers. And ...

We are NEVER with out HOPE. 

 

So we keep fighting , keep hoping , keep living  despite it all. One day at a time.

 

There is no else I would want to go on fighting each day , inspite of it all. 

 

Keep swimming ,

Lindsey 

 

 

 

 

 

 

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