“This Too Shall Last”

In Alec Hill’s book “Living in Bonus Time”, he shares that only 1 in 5 bone marrow transplant survivors live without serious health limitations.

As time goes on, I’ve been grappling with the very real possibility of living with chronic disability such as GVHD, fatigue, or something else. All things considered, I am grateful for each day that God gives me but it’s still hard to consider living with a potential disabling condition for the rest of my life.

Recently, I’ve been reading a book my brother gave me entitled “This Too Shall Last” by K.J. Ramsey. The author is someone who lives with chronic illness and fatigue which is debilitating. She poignantly recounts how she often wakes up in the morning in pain, feeling tired instead of well-rested. And the “joy that comes in the morning” which the Word talks about is something foreign to her as she can’t remember what it feels like to wake without feeling weary. 

Ironically, it’s encouraging for me to read of her perspective on suffering as I can identify in many ways with her sentiment. I’ve been feeling increasingly tired these days as I go through my steroid taper. And some days I feel like I’m at the end of my rope with this cancer and the toll it’s taking on me and my family. 

Yet, Ramsey’s book has been helping me learn to embrace and accept what I’m going through... even if it might linger. She says, We’ll find that the pain we wish we could end, the pain most books on suffering promise to turn into a shiny transformation story, is actually the place we can encounter the most grace.

I admire Ramsey’s insightful transparency when she says I wondered if finding grace when suffering lingers requires moving from hiding to honest, from naked to clothed, from withholding and ashamed in our singular stories of suffering to being held in a shared story of God‘s solidarity with our pain. 

Yesterday, I just didn’t feel like going to the clinic for my follow-up appt (not that I ever look forward to it haha!) 😉 I’m just tired of being tired and getting repeated blood labs and other tests to check if things are improving. 

Yet it was good to see my nurse practitioner. She has impeccable bedside manner with an amazing balance of knowledge, experience, and compassionate care. After talking about our dogs for a while 🐶, she asked me how I’ve been feeling. I shared of my increasing fatigue and edginess. She explained to me that my symptoms are totally normal and aren’t due to the dosage of my steroids but rather to the extended length of time I’ve been on them. So she said to expect to have even more side-effects in the time to come, with feeling the need to sleep for hours on end and hormones flaring like that of a teenager! For example, I might find that I have less of a filter on what I say or do. I’ve definitely felt this as has my family unfortunately, so I need to understand my mind and body and know when to rest or retreat... so I can guard myself (and others!) from saying or doing things that are inconsiderate or hurtful. 😬

On a positive note, my viral levels are still undetectable, my blood counts are steadily improving, and my Philadelphia chromosome mutation result is still negative! 🙏 

Originally the plan was to resume my baby revaccinations (which have been on hold since January cause my immune status is too low) as well as eventually the covid vaccine. But unfortunately, my recent labs showed my immune level hasn't improved and has actually gone down a bit over the past few months even with tapering steroids. Would appreciate your prayers for this. Trusting in God's timing and continual protection. Lord-willing, when my immune deficiency panel improves, I can get my covid vaccine and resume my baby revaccinations as well. 

Slowing down our life to the pace of my disease was simply the beginning of a terrible, beautiful dissent into the place where, I would find, God had already made his home. - K.J. Ramsey