The battle RAGES on 😤

I listened to a timely podcast recently. The speaker shared of how Jacob wrestled with God and then ended up living the rest of his life with a limp which always reminded him of his need for God. Kind of like Paul’s thorn. She compared Jacob’s example to the paralyzed man healed at the pool of Bethesda not knowing who even healed him when asked. The chronic limp actually served to become a hidden blessing and grace as it was a tangible reminder of his dependence on God.

This illustration spoke to me as I continue to endure a long gradual steroid taper (2.5 mg a month) which would take me into this Fall. My providers want to take it slow this time in hopes that GVHD will not resurface when I’m off of them. If it does, then the prednisone would be less effective the 2nd time around they said. I’m so thankful for these meds, but they are taking a toll on me.

I’m dealing with the physical and emotional side-effects of the prolonged taper including fatigue and irritability. I almost feel like I’ve lost my filter on things so I’m needing to be careful that I don’t inadvertently say inappropriate or hurtful things to those around me esp. my family. Truly a test of patience. It’s been a challenge learning to know my body and how to balance activity with rest. Definitely a marathon but not sure what mile I’m on these days! 🏃🏻‍♂️🚶🏻🏃🏻‍♂️🚶🏻

Thankfully my blood counts continue to rise slowly but steadily. My immune panel is also improving though still not enough yet to get vaccines. And recently I got the results back from my 1 year post-transplant bone marrow biopsy which showed no evidence of leukemia or Philadelphia chromosome... so I’m still in remission.

Yet despite the great news, I wonder why I’m not thrilled. I should be and I feel guilty that I’m not. Instead of being overjoyed, I strangely feel kind of depressed.

I’ve been struggling moreso recently esp. these past several weeks. Though it pales in comparison to where I was last year at this time, it’s still a daily battle both physically and emotionally. My body and spirit are weary. No matter how much rest I get, I often wake up with a heaviness of heart that I just can’t shake off. 

But I’m not sure if my recent feelings are entirely cause of my steroid taper or if it’s related to things from this past year... kind of like PTSD. Probably some of both.

I realize I’m still processing everything I’ve gone through including some survivors guilt as I’ve witnessed several fellow fighter friends pass away this past year and others going through their respective battles. For example, a few months ago, it hit me really hard esp. with the passing of a dear young man, Ryan, who I got to befriend along this journey. Ryan relapsed and then passed away after a hard fought battle. Only 21 years old. 

In Alec Hill’s book “Living in Bonus Time”, he explains how our brains only allow us to process a certain amount of trauma and suffering at a given time. That’s why there’s a condition known as Post-traumatic stress disorder (PTSD), where later on the feelings eventually flood our minds and take a toll on us both mentally and emotionally. 

I remember working with many war veterans who suffered from this condition as they processed the loss of their comrades and the horror they experienced during war. Not that I have PTSD or have been in war, but I think I’m processing the suffering and loss of this past year and a half.

Grace wisely shared with me recently that maybe we should just expect this as part of the ongoing battle... so that we wouldn’t be caught off guard but rather could be prepared and equip ourselves to fight. I look forward to getting some counsel and help. Please pray for continued faith, perseverance, and strength in this journey.