Jenny here.
I must have walked through that hospital door more than a thousand times in the three months Wil was admitted, for not one, but two transplants, after the first failed to engraft.
Room 813. The room that we admitted to with the queasiness and nerves you can only imagine if you're facing death with the hope of new life. It's not something that can be explained, only experienced.
Room 813. The room where Wil would be taken down to nothing but scraps of himself. Where his original immune system would be destroyed by chemicals and radiation and he'd receive new cells. Bated breaths. The possibility of life through facing death. Having time and space now, I realize that I was taken down to scraps emotionally too.
Room 813. I must have touched the plaque next to the door, tracing the Braille bumps, in my own little ritual of faith, a thousand times. Every time I entered that sacred ground.
In room 813, we cried. We laughed. When the transplant failed we crumbled. And then got back up. Wil faced death squarely in the eyes at least twice that, almost, 3 month stay. When I read about others who have been through transplant, I'm amazed how many feel like that was the point, beyond any chemo-cations, that they actually felt so close to death and had to emerge from it slowly as they gained strength again. It makes sense. How many days was he at ZERO neutrophils and getting daily transfusions just to keep him alive? Too many to count.
That hospital is torn down now. That room is long gone. A new one, a short distance away, houses the staff we will always love. But the old building...lies in dust, alongside the ashes of a former time and life for us. If I close my eyes though, I can trace every line and detail of that place in my memory. It's where our life began, again.
Those days on BMT during transplant. Ground zero. That has become a touchstone for us. The ultimate test of what we are about. It's what we have measured our days and life by, even now. It's the "we can do this next step because we've done harder" measure that we use now. I always wished I had a piece of that place as physical tribute of our transformation beginning. Of our new life chance. Of fear I've never experienced before. Of grief that swallows you up. Of stillness. And even peace.
But today, friends. Today was clinic. His CBC is ALL normal ranges! His Prograf (anti-rejection med) is DISCONTINUED AS OF TODAY!!! Next month the last anti-viral will stop! He's down to so few meds and they are all ones a PCP can prescribe. We won't be back for two months. We're being referred to a PCP. Then no oncology visit (other than a port flush) until October for his two year anniversary. He still has terrible neuropathy, most likely for life, and that chemo brain processing issue is real but coming along. In short, he's really making progress. Now to stay disease free...
The day was already SO full of ugly cry for the news. 525 days since transplant, in the making! And then....the nurse handed me something square, covered with a post it, that simply said "Clark."
She said, "we've had this a few months in the cupboard, but we were reminded today to give it to you."
I moved the post it. I had to catch my breath.
[INSERT MORE UGLY CRY]
Stunned. And I know who it was, even without asking. And if you're reading this...thank you. It's seriously one of the most touching gifts ever. You may have been the one to pull it off the wall...but it shows the true spirit of the entire UTSW BMT team. The love, the light, the care beyond the job description.
[INSERT MORE UGLY CRY]
Stunned. And I know who it was, even without asking. And if you're reading this...thank you. It's seriously one of the most touching gifts ever. You may have been the one to pull it off the wall...but it shows the true spirit of the entire UTSW BMT team. The love, the light, the care beyond the job description.
Everything else...
I know it's been ages since I blogged. I'm struggling and soaring all at the same time lately. I'm still in my ash heap, trying to make ash angels out of everything. I feel happy. I feel grateful. I feel some guilt in not documenting this most important part of the cancer journey. Because it's more real and harder than the treatment portion in many ways. But it's harder to document. And I'm not sure who would understand. Maybe I'm worried about judgement. Maybe I'm worried about having evidence that this part was so hard. Like there is pressure to be awesome and joyful 24/7 after all that's transpired. I'm ok sitting in my ashes, it's knowing that may be perceived as worrisome to others that keeps me from speaking too much about it.
I'm less offended and more drained of good intentioned people who are thrilled we are "back to life." I get it. And we are blessed to have people who are over the moon at how far we've come. But we are also muddling through in ways unseen, and life before? There's no going back. Theres no do over. There was never a pause button to push once he was disease free. The music stopped and now I'm not sure about what new song will fit. We have to figure all this new stuff out (who we are, what we know, what we value, how we want to live, etc) from scratch because all the rules changed. And we are piecing it together. Slowly.
So here we are. New life. And completely aimless but making steps. We are new creatures. Our marriage is forever different. Our likes, our personalities, our everything. Blank. Does that make sense? I'm still trying to figure it all myself. When your slate is wiped clean, anything is possible... Sort of. New and exciting except you'll always be carrying cancer along for the ride and the memories and the trauma and the pain exist alongside the openness. It feels like moving into a new place and your couch won't fit around the bend in the hallway. So you sit down and realize you have a couch. In the wrong room. And no place to sit in the new space. You're excited. Comfy. Disappointed. Tired. Perplexed.
I know it's been ages since I blogged. I'm struggling and soaring all at the same time lately. I'm still in my ash heap, trying to make ash angels out of everything. I feel happy. I feel grateful. I feel some guilt in not documenting this most important part of the cancer journey. Because it's more real and harder than the treatment portion in many ways. But it's harder to document. And I'm not sure who would understand. Maybe I'm worried about judgement. Maybe I'm worried about having evidence that this part was so hard. Like there is pressure to be awesome and joyful 24/7 after all that's transpired. I'm ok sitting in my ashes, it's knowing that may be perceived as worrisome to others that keeps me from speaking too much about it.
I'm less offended and more drained of good intentioned people who are thrilled we are "back to life." I get it. And we are blessed to have people who are over the moon at how far we've come. But we are also muddling through in ways unseen, and life before? There's no going back. Theres no do over. There was never a pause button to push once he was disease free. The music stopped and now I'm not sure about what new song will fit. We have to figure all this new stuff out (who we are, what we know, what we value, how we want to live, etc) from scratch because all the rules changed. And we are piecing it together. Slowly.
So here we are. New life. And completely aimless but making steps. We are new creatures. Our marriage is forever different. Our likes, our personalities, our everything. Blank. Does that make sense? I'm still trying to figure it all myself. When your slate is wiped clean, anything is possible... Sort of. New and exciting except you'll always be carrying cancer along for the ride and the memories and the trauma and the pain exist alongside the openness. It feels like moving into a new place and your couch won't fit around the bend in the hallway. So you sit down and realize you have a couch. In the wrong room. And no place to sit in the new space. You're excited. Comfy. Disappointed. Tired. Perplexed.
Digging into life...
We're moving forward though and found a place to live, come summer. We are purging and downsizing to 700sq feet. I need less. I need simplicity. Our hope is to be able to have Wil return to school (he has taken one class this spring to get his feet wet) and to hopefully pay down debt we incurred in the last few years. This move will be big. Hard. Needed. I have nervous excitement about it! We're moving to Cowtown, just blocks from 7th street and the cultural district. We will be true city folk ;-)
We're moving forward though and found a place to live, come summer. We are purging and downsizing to 700sq feet. I need less. I need simplicity. Our hope is to be able to have Wil return to school (he has taken one class this spring to get his feet wet) and to hopefully pay down debt we incurred in the last few years. This move will be big. Hard. Needed. I have nervous excitement about it! We're moving to Cowtown, just blocks from 7th street and the cultural district. We will be true city folk ;-)
Wil continues to do tai chi to work on mobility. We have dinner and trivia with peeps on Monday. We love our little life. We. Are starting over. From the foundation. A change in residence will bring us even more good (and less stress).
And in our new place this summer, the first thing I know I will hang will be the framed room plaque. Our touchstone of what was, is, and is to come...the test of us that still continues.
Room 813. It's were life ended...and began...all in one hospital stay.
Much Love.
And in our new place this summer, the first thing I know I will hang will be the framed room plaque. Our touchstone of what was, is, and is to come...the test of us that still continues.
Room 813. It's were life ended...and began...all in one hospital stay.
Much Love.
