I don’t know how to write about our “journey” anymore. I think mostly because in the beginning it felt like exactly that, a journey.
We were at the starting point and we had a destination. It now feels to me that we’ve been walking in circles, on many occasions looping back to the point before the starting line. I feel like every time I update this, I’m saying the same things but with a different edge, a different balance of bad vs. ok.
Right now we’re on the ok…maybe even good side. But I have fear in even writing that down. "I'm not superstitious, but I'm a little-stitious." -Michael Scott. Joe’s numbers are fairly low however they are stable (he’s not needed blood product transfusions for some time). The paraflu he had stuck around for far too long and he got mono, but I think he may have finally kicked those. They took him off an immuno-suppressant drug used to prevent graft vs host and switched him to steroids because they believe that was affecting his counts. He will be having another boost of the donor’s stemcells this Friday and will have an appointment with our main doctor on Monday. I believe he will be scheduled for a biopsy a few weeks after the boost to give us an official report of his status.
They recently told us that shortly Joe will be ready to come home in between appointments. This is both so exciting and incredibly fear inducing. I have so many triggers from the last go around. We had such short lived hope when he hit “remission”. Walking in this phase feels like willingly stepping into a haunted house. (If you know me at all you know this is something I would NEVER do.) I’m tiptoeing, heart pounding, in tears wondering if around the next corner something will jump out to scare the life out of me. All the while hoping, praying that this nightmare walk would be over. Begging to go to the exit and be done. The thing about being in this kind of fear for so long is it doesn’t go away. You’d think that eventually the boogeyman wouldn’t scare you anymore. For me it’s the opposite; I now have fear of the fear and am left exhausted.
I am trying to sit in the joy of hopeful news. But there is part of me that is trying to protect my heart by holding out for the news that we are really in the clear. The thing is, I don’t know what news will make my hope feel safe. Will it be when we see his numbers climb consistently, after the next biopsy, after we’ve made it to one year past transplant, five years past? Will the boogeyman forever be lurking in my mind? And if so, will my confidence in our future ever be strong enough to scare him away?
These are the questions and the ramblings of my mind. I don’t write them in hopes of advice or answers but in hope of transparency for anyone that is also going through extended struggle. When I sit down to write I almost never know what’s going to come out. Maybe this is for my fellow cancer club members. For the family that none of us asked to be a part of. Maybe through this transparency we can ward off the boogeyman for just one day. To you that are fighting him, I love you and I hurt with you.
Right now we’re on the ok…maybe even good side. But I have fear in even writing that down. "I'm not superstitious, but I'm a little-stitious." -Michael Scott. Joe’s numbers are fairly low however they are stable (he’s not needed blood product transfusions for some time). The paraflu he had stuck around for far too long and he got mono, but I think he may have finally kicked those. They took him off an immuno-suppressant drug used to prevent graft vs host and switched him to steroids because they believe that was affecting his counts. He will be having another boost of the donor’s stemcells this Friday and will have an appointment with our main doctor on Monday. I believe he will be scheduled for a biopsy a few weeks after the boost to give us an official report of his status.
They recently told us that shortly Joe will be ready to come home in between appointments. This is both so exciting and incredibly fear inducing. I have so many triggers from the last go around. We had such short lived hope when he hit “remission”. Walking in this phase feels like willingly stepping into a haunted house. (If you know me at all you know this is something I would NEVER do.) I’m tiptoeing, heart pounding, in tears wondering if around the next corner something will jump out to scare the life out of me. All the while hoping, praying that this nightmare walk would be over. Begging to go to the exit and be done. The thing about being in this kind of fear for so long is it doesn’t go away. You’d think that eventually the boogeyman wouldn’t scare you anymore. For me it’s the opposite; I now have fear of the fear and am left exhausted.
I am trying to sit in the joy of hopeful news. But there is part of me that is trying to protect my heart by holding out for the news that we are really in the clear. The thing is, I don’t know what news will make my hope feel safe. Will it be when we see his numbers climb consistently, after the next biopsy, after we’ve made it to one year past transplant, five years past? Will the boogeyman forever be lurking in my mind? And if so, will my confidence in our future ever be strong enough to scare him away?
These are the questions and the ramblings of my mind. I don’t write them in hopes of advice or answers but in hope of transparency for anyone that is also going through extended struggle. When I sit down to write I almost never know what’s going to come out. Maybe this is for my fellow cancer club members. For the family that none of us asked to be a part of. Maybe through this transparency we can ward off the boogeyman for just one day. To you that are fighting him, I love you and I hurt with you.
