July 8, 2019
I have started many emails and written many thoughts down over the last few weeks but nothing seems right to share. My emotions are as unpredictable as Leukemia and all its miserable side kicks that keep trying to take Mike down along with the Villian himself. My thoughts are all over the map .... from one minute feeling so angry and hopeless to the very next minute feeling the deepest gratitude and love for God , people , and life. As fearful as I feel in days , I am never with out hope. We have so many people in my life who are not letting us drown in our worries and sadness .There have been many God winks , cardinals , rainbows, devotions shared by my mom at just the right time, and reminders that God is with us for me to lose faith in this journey.
But this is hard. It sucks really bad . And often I think I should leave that part out for you all. I have cried enough tears that soak our sheets the same way as cancer night sweats. The uncertainty of our future and Mike's physical pain seems to overwhelm us on days. I have drank too much coffee , cherry coke and probably wine in trying to survive those soaked sheets of cancer. I have watched too much trash tv and spent too much time on social media , what Lady Gaga calls the “toilet bowl of the internet “ comparing our lives to the next perfect fakebook news.
Because this surrendering to the journey is hard. Really hard. It’s so hard to watch YOUR person suffer and say there is nothing I can do to fix it. Well maybe a back scratch or foot massage helps ease the pain a little.
And so it should be known that Mike and I only appear to be strong because of our weakness. We appear to be strong because those surrounding us with love and caring for us and our children daily, are holding us up. They are making sure we are being fed something other than gummy bears and chips and reminding us of Gods grace daily. They show up and watch trash tv , take our kids fishing and to the movies or just stay and play baby or dress up , bring peaches and prescriptions , make jambalaya and lasagna or bring Verde take out, fold clothes, change filters, or just show up and sit and make us laugh , and continue to text and call. As Graham says, “it makes my heart happy “. We are focusing on all these things that make our heart happy while we wait. And there are plenty.
Yet cancer effects all those in close and far proximity. Everyone is touched by it. So I pray for our family and friends too. They keep showing up and showing up. Giving us hope and I know how painful it is for them too. (Especially my mom who suffers from the brunt of my tears ) I could never stay mad because of my love and gratitude for our family, they keep us alive.
All in all , deep in the pit of my heart , when I have become too exhausted fighting and I am forced to surrender to the journey where gratitude ,hope, love, and grace win.
Mike and I refuse to give those up to cancer as well. Cancer is a thief of many things but not those.
So we get off the toilet bowl of the internet and pour our energy into something positive, something that brings us back to what’s important amongst the suffering , the love we share on this journey.
We try our best to live here. In a place of trusting Gods plan. In a place of Grace.
Leukemia continues to be complicated. Well not really , it simply tries to take over Mike’s body relentlessly and cause suffering beyond belief.
But the specifics in deciding on treatments and reading scans are complicated and unpredictable. I don’t know how the doctors do it. I often tell Dr. Kota he has a gift from above . It is a balancing act of keeping the medications, GVHD, Leukemia , and infections all in check.
Mike had his latest pet scan Wednesday June 26th.
As Dr Kota shared with us , the positive news is that his Leukemia is still quiet.
We are grateful.
However , in the Leukemia and transplant world , Mike has three different monsters who are a daily threat .
Graft verse Host disease (GVHD) . I
He’s fought the first two , so I guess the monster behind door number three has woken up. After many test , they have discovered a fungal lung infection to be the culprit of his symptoms he has been suffering from. Over the past couple months his cough and breathing had progressively gotten worse , leading him to less days at work and more time on the couch. He hasn’t been able to work in the past three weeks. He has been pretty miserable. He continues to keep his mind in the game and focus only on getting better.
We have been told it is a serious fungal infection and will take strong antifungals for quite sometime to help clear it up.
He is taking an oral anti fungal and his doctors also added on 30 consecutive day infusion, which he started at Winship in July 4th. We believe this will get him better.
I’ve been spending a lot of time thinking about surrendering, waiting, patience , God’s timing.
I came across this particular definition of Grace in a book that I have been repeating over and over in my head.
As Eckhart Tolle says ,
“ throughout history , there have been women and men , who in the face of great loss, illness, imprisonment, or impending death, accepted the unacceptable and thus found ‘the peace that passeth all understanding ‘.
“ Acceptance of the unacceptable is the greatest source of grace in this world”️🏽
We have found grace here. In the waiting , in the slowness, in the surrendering ,in the people who love us and are constantly surrounding us with love.
Cancer seems unacceptable to me. But so does gun violence, poverty , mental illness , and all suffering. Cancer is just ours.
Mike suffering at home on the couch instead of working or fishing with Jake .....seems unacceptable.
Mike fighting Leukemia, Graft verse host disease and now a serious infection ...seems unacceptable.
My unacceptable list goes on and on but I’ll stop there , it’s serving me absolutely no good to live in the unacceptable. And I am constantly aware that so many people have it worse. It’s actually drowning me even more to live in the unacceptable.
I AGAIN have been struggling with the why him , why us , and when will we catch a break questions. And I know this is not where God , hope, and faith lives, or light for that matter.
It hit home to me one morning last week when I came back from a walk and saw Mike laying on the couch with his best nurse , Sissy, taking care of him. She had all the things he needed set up on a table right beside him and had put her pink fuzzy kitty cat eye mask on him . I said she would make the best nurse when she grows up and she said ....she was his waitress and she was going to be a cow girl when she grew up . My bad. She does make the best fruit tray.
I realized though , that she gets it without knowing. She doesn’t ask for things to be different. She doesn’t wish this would
go away. She doesn’t need to know answers or question anything. She is in the present moment with her daddy. She is taking care of his needs right now. She’s surrendered without even realizing it. ( can’t say the same for the boys ...” when are we going to the next activity ?!?”)
But I believe after reading wise words from Elkhart Tolle ,
“All we have is now. To accept the unacceptable. And to
Be ok with uncertainty. “
Before and after each scan there is a period of waiting. Mike and I are grateful because we are fortunate that our wait time is not that long. But the waiting always brings me back to surrendering to God. And surrendering to the brilliant brains of these doctors that God put in our life on purpose.
After Mikes pet scan that Wednesday they called us back for him to have a lung biopsy early Friday morning. They were trying to narrow down exactly what was going on in his lungs. Mike and I surrendered the night before to my dads offer to come with us. And I’m so grateful we did.
Mike has had one lung biopsy before , two years ago. We knew the procedure was risky. But as I left the room of doctors and nurses after we had listened to and signed papers agreeing to the possible outcomes ,including lung collapse or death, ( I needed some of the drugs they were giving him at that pint ) I realized yet again just how completely out of control I am on this journey.
As I walked away from Mike , at yet another procedure, I surrendered again. I surrendered to trusting the doctors and nurses who were taking care of him. I surrendered to God , knowing there is nothing else I could do. Only in this kind of complete surrendering does peace come.
I was grateful in that moment I had said yes and surrendered tomy dad who was there in the waiting room. I was thankful we could talk about the ridiculousness of the political debates on the front page of the paper. Grateful to be able to find Gods grace in that moment to lighten the weight of the world I felt on my shoulders.
Dr Kota ( and his sweet wife) also came by to check on us.
This is when it becomes clear that God is with us as we surrender. Mike and I are forever grateful and in debt to Dr.Kota and ALL the doctors , nurses, techs who keep pulling for Mike with all the odds stacked against him. Who answer our tireless questions , frustrations , and worrisome hearts. Who keep us swimming through this sea of fear and grief.
All we have is the moment at hand.
I find the longer we walk this road , that in those moments is where I continue to find enough Grace to keep me believing in something bigger.
All we have is the people that love us so deeply.
Once we surrender to the couch and to focus like Celia , on just getting her daddy better in this very moment, we are then able to see this journey really isn’t so bad because of the love we have found along the way, the love shared in these moments.
When we are able to love these tough moments , the fear and uncertainties of the future seem to melt away. Only love is left.
Thank you for all the extra prayers. We believe with all we have they will pull him through this monster of an infection as well !
Keep swimming ,