FLM Friday- the really long version
Sorry for the long email and random thoughts. Take what you want from them, I am aware they don’t always make sense or are grammatically correct. I continue to write thoughts throughout days with my main focus on our kid’s. So that one day when Mike HAS beaten this stupid disease , we will be able to tell them how much he fought for them , how brave he is every step of the way. How they can overcome things too because he has taught them how to. I also write down thoughts , so maybe I will go back and remind myself I do have strong days amidst the many many weak ones.
I have needed many reminders the past weeks.
You can scroll to the bottom for an update on Mike :)
I have been rereading A New Earth by Eckhart Tolle.
He says ,” the most important , the primordial relationship in your life is your relationship with the Now, or rather with whatever form the Now takes, that is to say , what is or what happens“. Not resisting what is happening but accepting and responding to whatever the present moment requires.
This is really hard to do and easier said than done . But I have been trying my very best to focus on this over the past few weeks and especially last few days.
Many times these tough moments leave me with a lump in my throat and tears flowing from my eyes, as sweet Jake goes and crawls up in the chair with Mike to watch a movie. But maybe that reaction comes as I leave the present moment and worry about the future , things that have not and might not ever happenen.
God IS here now. Showing up in moments of true grace as I am brave enough to be present in them. The Grace of being present to each moment , the small acts of love .
God does not give hasty answers but allows sacred moments to take place in the quiet and patiently waiting hearts. Painfully patient 😜
I want quick answers. Quick fixes . Quick responses. But I am learning we are losing our patience with God and becoming impatient with letting our stories unfold in time , because the pace of the instant world we have created is blinding us to that.
The longer I walk beside Mike on this journey , the more suffering I am watching him endure bravely each day , the more I beg for healing that doesn’t seem to be coming. The more I am forced to surrender to Gods plan. The universe’s plan.
The more we are required to live by faith.
Faith , trust , and surrender as the only path to peace.
Peace doesn’t come over night and stay. It is requiring daily work in my heart and mind , minute by minute , to surrender over and over again to God.
Mike continues to be the bravest person I know.
As the weeks seem to get harder ,he still powers through with hardly flinching about the next procedure that comes his way.
Our nurse , angel friend Debbie has always come to distract us during appointments at Winship. She came this past week on Wednesday. We laughed and reminisced as she asked us about how Mike and I met at Auburn , how he broke up with me during football seasons , how I desperately begged him to take me back( quite a few times) , how he proposed and other stories that made me smile and remember all the ways I loved him in the beginning days.
Our love looks different now than in our early fancy free 20 yr old days .
When I can’t fight the past memories and the present moment is hard to grasp , sometimes I find myself wishing so bad that it is paralyzing, that we were back there , sitting in my parents rental house with him handing me out one ornament at a time with the single words he wrote (in glitter pens) will ...you... marry ... me. On each one. With glitter in his truck as evidence that he has a soft place in that manly heart.
I had not gotten our tree yet because the weather had been bad . So I had no place to hang hang them as he handed them to me , the way his plan should have gone. He was too anxious to wait a couple more days for me to get the tree. Probably the only time I have seen him nervous in my time of knowing him.
Sometimes my mind is completely paralyzed ( the only way I know how to describe it ) in the past wishing we were back in those simple days of worrying about the details of a wedding , when life seemed easy.
I read this quote this morning “sometimes our hearts need time to catch up to what our mind already knows”
Sometimes my heart is not ready to move on to our reality. So I have been giving it some time to catch up. I have been trying to give myself time to hear God and to to live in the darkness. Surrendering to him over and over again throughout these frightening days.
Sometimes the present moment requires much heartache and maybe that’s why I try to escape it.
Mike scheduled an out patient lung drain , like you would schedule a teeth cleaning or haircut Wednesday two weeks ago.
This is when I kinda had a melt down ...
“ it’s ok to have a meltdown. Just don’t unpack an live there” Hoda Kotb.
But can you blame me , I mean I have three amazing examples of how to give an Oscar worthy melt down on any given day.
But kids don’t unpack there. They are the best at living in the now , so surely I can learn from them.
The world of cancer slowly makes you feel like these things such as out patient lung drains are normal and routine and I actually start to believe that too. There are many others suffering along with us and that have it way worse. Yet the reality of it sometimes becomes too much to bare.However as I read Tolle’s words , resisting and being angry at the next path to peace for Mike isn’t making this easier. That I am supposed to not label this as good or bad ...hmm 🤔 Mike accepts it so well , even chest tubes , he is teaching me each day about surrendering. So I am believing Tolle’s words and trying to follow Mike’s lead.
Yet I couldn’t quite get over it that quickly. Because Instead of planning a dinner for Valentine’s Day. A night out. Or a night in to cook. And argue about stupid things like laundry or kids. Or whatever pressures the world puts on us to keep up with the next made up holiday. Boy does that sound like a dream to me, I’d take that fight back anyday.
But Instead of doing all of that this week , we watched a you tube video on how to drain a chest tube at home.
While we were at Emory Thursday (the 6th) to have his lung drained out patient. His pulmonologist decided that our best option was to put in a permanent ( well not permanent, it can be removed ) chest tube , so we can drain the air and fluid that builds at home to manage symptoms better for him. Hints why we needed the YouTube video viewing .
So we went Monday morning , a week ago , to the midtown Emory location to have the chest tube placed. We spent all day there. His X-ray after the placement looked slightly worse so they sent us home hooked up to the water seal box they leave you hooked up to the hospital. Which allows it to drain continuously.
His sweet doctor trusted Mike enough to go home with it and come back Tuesday morning for another X-ray and to unhook the box.
On Monday afternoon the NP tried to teach me how to drain the tube and change the dressing.
If y’all know me , you know I used to faint when I heard the word hospital. Which I stayed true to myself and had to sit down during my first lesson. 🤦🏽♀️
She told me that in the morning when we came back , she would teach me again and I told her I would redeem myself.
Which I did. 👏
I told Myself , after all the things he has been through , I must be able to do this😳. His doctor did comfort me and try to make me feel better in saying that it’s different if it’s your loved one. Which I agree , however I usually would faint over a stranger too 😜
Mike has taught me to be brave and that I can do hard things.
As the week progressed I have tried to be patient and live in the painful moments. Accepting them all.
“ the secret to patience is to do something else in the meantime. “ Croft Pentz.
God allowed my heart to catch up with my mind.
I have prayed. I have played basketball with the kids. We have played connect four. Watched movies and baked lots of cookies. We have gone to watch the kid’s basketball games. If you think you can’t take one more step, use the image of mike pulling an oxygen tank to little league basketball as your motivation.
And last night I had this realization of the many ways love can look in our lives when we stay present in the moment at hand. The many ways we are struck by love , painfully and joyfully.
Our love looks different from the night I said yes to the ornaments.
Our love looks like draining chest tubes. But they are both acts of love none the less.
Our love is stronger and deeper.
We are more connected .
Even if the connection is caused accidentally by the extremely sticky tegaderm from the dressing changes , to prove it.
Causing us to be stuck together in ways we never imagined. 😝
Our love has grown in ways I never imagined.
I can be mad about all the crappy things cancer has done to Mike .
It’s the thin line .
But when I can stay awake to the moment at hand , the gifts God is giving us through suffering, I can be grateful for the gift of love known through suffering.
I also am aware of how many people have lived without knowing love at all.
I’m grateful God didn’t let me give up on Mike 15 yrs ago when dating lots of girls was his best talent. ( I’m kidding).
He is my person. And whether we are draining a chest tube or watching our kiddos play basketball I’m grateful for this journey with him.
I won’t ever give up on him.
We continue to be cared for by the most wonderful people. His pulmonologist has been a gift through these rough few weeks.
We are still living in the world of few answers.
His lungs get temporary (or none at all ) relief from the draining but his lung is still partially collapsed. His doctor has said the damage the GVHD did to the lungs has caused these tiny tears that are causing his lung to leak air. To be honest we don’t really understand everything ourselves.
The main thing is , he is struggling to breathe and requiring oxygen all the time now.
He finished a round of chemo (Inotuzamab ) this past Wednesday.
He had an injection of spinal chemo and a chest ct last Thursday and Friday.
We are not really sure the next steps.
We are waiting patiently ( 😳😬) for his lungs to hopefully heal some and for the chemo to do it’s job.
Broken Halos continues to come on the radio often. I truly believe it is Gods way of reminding me through these days of unknowns and uncertainty to stay in the present moment and quit searching for answers.
We listened to Broken Halos and Remedy as we laid in bed one night this week after they placed the chest tube.
So I remind myself over and over. We can’t go asking Jesus why. We can’t go searching for the reasons.
We have to keep believing that love is our best remedy.
Sweet Celia leaves us love notes all throughout the house. They keep bringing me back to the present moment and reminding me that love is healing us one breath at a time. Share love.
We will never give up. We will keep fighting with everything we have.
Thank you for all the continued support. Donut and king cake deliveries, paintings in the mail ,texts , picking up kids , digging holes and planting flowers in our yard , cards , and on and on and on.
As another Cancer fighter said , “ if you want to feel loved , get cancer “.
You love us well.
Keep praying. Keep swimming.