update on Mike
Dear Fightlikemike Army,
I am grateful to share with you guys that the all of the test Mike has had in the last two weeks continue to show his Leukemia to be stable. We give thanks to God above. And the brilliant humans on this earth taking care of him.
This does not come with out the price of suffering. The blessing and curse of GVHD continues.
He completed his second week of chemo for this month. He will have a chemo shot next week and also begin a new drug for his chronic skin GVHD, that is trying to suck the life out of him. It is a six hour infusion and will be given four Monday’s in a row.
We pray that this will help him manage his GVHD of his skin and give him some relief from pain.
I want to be angry , because I am, that he is suffering each day. I want to hate cancer and the universe for inflicting him with it. I want to curse the fact that it is trying to break our family into a million pieces. Because , damn if it isn’t trying it’s best to do that. I want to crawl into the darkness it has created in our days and sit and sulk in my very own selfish pity party. My humanness and ego wants to question where God is in these moments of sadness.
This is what cancer tries to do. It creates a pitch black sea of darkness that I sometimes want to to succumb to. This is the reality of the suffering it can create. It leaves me with that same sick feeling that I get from deep sea fishing in the roughest of seas.
I wrote about the seas of life and the waves that keep coming in a (long) story that I will post to the blog and had plan to send along with this update.
But when I woke up this morning I read a devotion that came to my email from Richard Rhor. I have felt somewhat overwhelmed with grief of cancer in the past few weeks and Rhor’s words this morning gave me a new perspective and I feel we’re exactly what I needed to read on this day. He explains suffering and transforming pain better than I could ever try. So I decided to share this with you instead.
I have been trying to fix , control, and understand Mike’s cancer since it began. Yes, I hope that in someway I can save him and make him better. But it is a challenge I am not winning , his suffering is immensely more than I can cure. And that is a hard fact that my ego struggles to let go of.
Rhor’s words hit home with me the importance of faith and trust.
“Unfortunately, our natural instinct is to try to fix pain, to control it, or even, foolishly, to try to understand it. The ego insists on understanding. That’s why Jesus praises a certain quality even more than love, and he calls it faith. It is the ability to stand in liminal space, to stand on the threshold, to hold the contraries, until we are moved by grace to a much deeper level and a much larger frame, where our private pain is not center stage but a mystery shared with every act of bloodshed and every tear wept since the beginning of time. Our pain is not just our own.”
You can find the entire article here. It is worth your time to read.
I have faith and trust in the journey , I really do. But I also am human and naturally my ego is bigger than my faith at times. Also at time my hurt and pain are bigger than my faith because I want that pain to go away. So I try and control what I think I can. But even that is leaving me with an empty feeling of hopelessness.
But overtime I hit the bottom and have exhausted all resources to gain control , every time I am forced to surrender to faith and the unknown , grace catches me . When I am finally able to fully surrender to the trust of the journey , to the care of others , and to the love of God. Every time I am surprised by the glimpses of hope and grace . And I am even more surprised when I am left with the peace that surpasses all understanding.
On Saturday I was reminded again about why we are able to choose hope . Why we must stand in liminal space, where we can find purpose from pain . “Hold our pain and suffering until it becomes resurrection” he says.
Thank you for holding our pain with us. Thank you for giving us hope. Thank you for loving our family. Thank you for your donations. Thank you for showing up for us.
Thank you for supporting us in our efforts to make this disease a thing of the past.
I am trying to hold the pain of moments like Saturday Morning
as I watched Celia , matter of factly proudly write , I run for .... “my daddy” on the bib for her shirt For the race.
Yet I must sit with the pain and suffering to be able to move forward and transform it into something good in the world. So I keep swimming for that fact alone. I keep surrendering to the journey.
Trusting God and all the people caring for our family will carry us through. We would not be standing if not for our family and support system.
And we keep trusting our main man, Kota, who has touched our lives beyond understanding.
https://www.fightlikemike.org more stories here :)
Share Love, That’s all!
We don’t let go into trust until we have exhausted our egos.-