“Some things in life cannot be fixed. They can only be carried.” Megan Devine
Jenny here. Let me start out with, we are good. I am good. Health is good. Life is moving right along in interesting ways, always.
This, my friends, is a very long overdue blog post. Last I checked in, we were headed for THE Day +365 (October 9, 2015). I've started writing this in my head a million times. I profess that vulnerability is strength and that darkness is OK, but in my own life, it's still hard to wait the night out and be honest in a world consumed with chasing the unicorn and rainbows kind of happiness. We are so very happy these days, in arrays of color you might not associate with the word, while we are stumbling through an unlighted path.
I’d apologize for the length of this blog, but this one is for me. To document the place I'm at so I can remember it later. If you are curious about life, year 2 after diagnosis and transplant, when life gets quiet and when life starts to get a different real, then read along with me! Or if you are looking for mostly fluffy stuff, scroll through the summary of recent pictures, they are pretty great in and of themselves.
Day freakin' +365: To say it was anything but fantastic? Well, truthfully, it was that and much more. More richly colored. More painful. More wonderful. It was more of everything than either of us expected or have been able to hold without MANY tears.
The day started out with a trip, cookies in hand, to UTSW BMT floor. In many ways, this was a highlight from the day for both us. The floor, now in a new hospital, looks very different from the one we spent a total of 6 months in last year. But the feel…that’s made up of the people who work there, and it still felt like coming home.
(Insert pause, start messy tears)
(365 Cookies! 10/09/2015)
Wil’s face says it all from the pictures below. These people saw the worst times, knew the worst possible outcomes, but loved and worked fiercely. These folks, in a lot of ways, will share intimate parts of this journey that no one else will understand, but us and them.
(UTSW BMT staff 10/09/2015)
And their faces said it all too. We wish we could have seen everyone!
A few nurses kept holding his arm, telling him how good he looked, how they would never know he had transplanted, not once, but twice. It’s no wonder we’ve seen the clinic nurses and his oncologist high-five. I can say he’s a walking miracle. You can read these words and celebrate with us. These folks though, saw him when he looked like death, felt like death, and was brought to the brink of death to be born into the new immune system he is still growing. A big calculated risk. And so, between us, we shared glances, smiles, and a knowing…this knowing…he’s still alive. And it’s an amazing mystery of which to be in the presence.
(Wil on 10/09/2014, day of transplant #2)
That night we had dinner and play time at Dave & Buster’s to celebrate his "birthday." The people who should be there, the ones who truly “get it,” were there (thank you! We know there were some far away peeps that would have loved to be there and we knew you were there in spirit).
Wil didn’t sit down the entire night. Wil 2.0 is super social. SO social he forgot to eat. He’s happy to be alive.
By the end of the night he could barely walk due to the damn neuropathy. I wasn’t sure if we would get him in the car! Not a complaint though from him…he had one of the best days of his life.
(Last picture of the night in the car)
A few weeks later, on October 23, 2015, after the usual battery of tests and new BMA, we found out he has continued remission. He had the first set of immunizations to celebrate the good news (since his immunities were all wiped out with the conditioning chemo and radiation pre-transplant)! You would think after all he’s been through this would be the easy part…but he was not excited by this milestone!
(Wil 2.0 is also extra vocal and expressive!)
But since then we've enjoyed nights with friends and family. It sometimes feels so unreal I just cry. Little normals that haven't been normal anymore.
He was, however, the happiest guy in the world on Halloween, decorating, passing out candy by the handfuls, and wearing a costume he was so excited about that he told NO ONE beforehand. All in all, October was a great month.
(Spy vs. Spy Halloween night 2015)
Side note: It was a great month, yet…there is so much darkness and loneliness that comes with post-transplant too. For me, more than before transplant, for sure. (For Wil? It's different. Our two experiences and processes are unique). You go from being constantly supported in the hospital, to secluded at home so you are protected from germs, to emerging to the social world with fewer people in your life, feeling less connected to those around you, but you're ready to start living. (This has been hard to understand, hard to say aloud, even harder to write out, but here goes...). There were people we really wanted and needed there at the celebration, but you can’t force people to hold the day with the same importance or make sacrifices to be there. We’ve been absent, and have felt somewhat useless for 2 years now, and people have their own lives…they have been moving on and illness is a real drag. And now it looks like we've made it to the other side and people breathe a sigh of relief (unless you are us staring down the actual stats of the importance of him making it to year 2-5 in terms of survival rates, we've got a ways to go, we breathe better, but it's still a lot to hold). Day +365 was more important than our wedding day (to me) and more important than the day he was born (to Wil). It turns out, it is not as important to everyone else. I, we, are working on not chasing love so much, on not begging to be in people’s lives, of trying to grow where we are planted now and take it personally. It’s hard to let the hurt in, not act a fool, and impossible to find the right words…you know, words to the feelings you want to speak but know will hurt the person when you say them. They are my truths and most people are not asking for my opinions (go figure), and I get that. As a wife though, and Wil’s biggest fan, I felt like a mama bear and wanted to take away the hurt of missed RSVP’s and the “no’s.” It’s still so painful to see him carry the weight, of all the things we lost in our proverbial fire. To see him trying so hard to get back what we lost. So we put on heavy metal and picked our hearts off the ground. Life is short and, odds wise, could still be much shorter...so we try to let go...of hurt feelings, but also sometimes it means the moving forward from people we've tried to hang on to...you find out what and who are your true foundations when your life burns to the cement block.
Today...marks our 2 year anniversary with UTSW BMT. Today is the day he was transferred on to the unit and it all started getting real. I've known all week what THIS week meant.
Have you ever watched Survivor? In the last episode or so, the remaining survivors take a long walk, down a path, to pass by the torches of each person who left the camp. It’s a silent and introspective stretch to contemplate all they have been through, all that has transpired, and all they have learned. I feel like I have been making that walk lately. Past the milestones, dates, and memories of the last two years. It's been a quiet and emotional time. Wil has not been in the hospital a whole year now.
I’m sleeping more now, like a solid 8-9 hours a night. I’m feeling more alive and energetic. I’m just coasting through the quiet days with Wil, soaking up the time before he returns to school, less encumbered by medical visits and errands now. Wil is taking care of me more. I have a partner back. It's amazing.
(Insert everyone cheering and congratulating us).
Yet the trouble with this leg of the journey is: I’m sleeping more, I have more energy, I’m coasting, I’m not merely surviving…free to finally feel the exhaustion of 2 long years, free space to think, freedom to be overwhelmed by the facts of ALL of this in a way I haven't had energy for since before diagnosis—the fact is I almost lost him, a few times. And it was traumatic to watch him decompensate so quickly. But I didn’t lose him. And not everyone is that lucky. I should make every second matter. Everyone is looking for us to be happy 24/7. And we are, mostly…but it’s…complicated. Hard. Scary. Sad. Still. Enough good now to be relatively hopeful, yet enough miles to go to be nervous about making longer range plans.
(Insert survivor's guilt. I get it now. It's so real.)
I have these intense dreams lately of sitting in a pile of ashes, atop the foundation of what was our house. There I am, dirty, undesirable, exposed to the elements. I’m there, trying to set up china pieces on the floor, in what was our dining room, for a dinner party. I sense, to the point I am exasperated in the dream, that the people attending will expect everything to be the same as before the fire. They will need wine and hors-d'oeuvres. Music. They will need good will and cheer. And so I begin my preparations… anxiously attempting to build walls out of the ash. Desperately trying to wipe the ashes from my face and clothes. I feel the stress of the ticking clock. They will arrive soon. I'm frantic.
And each time I have the dream, it never works. The walls don’t erect. I cannot find the food. My tears only help thicken the ash into a glaze on my cheeks. The people don’t show. And I feel relief that no one has arrived. Because I feel ashamed of what's left, how little is left of what I recognize. And then I feel rejection swell up that no one has arrived. So I lay there on mountain of debris, paralyzed in the enormity of the moment, looking at the open sky, ash particles suspended in the air I’m trying to breathe. I inhale what was my life, holding it in my chest, knowing it will sicken me to not let it go, but wanting to keep it with me a little longer. And so I exhale a cloud of dust, finally. Letting stillness come, followed by the darkness that is the everything of what I feel in that space.
I’ve been absent, angry, anxious, and emotional. I’ve been unable to find a way to say the truth out loud (of how you can be gratefully broken and lost without needing to be found) while everyone around cheers in excitement for us making it this far. It's a miracle. I know it first hand. And I also know this next part of healing is harder than the rest.
I’ve come to a place in grieving where I realize just how marginalized the role of caregiver can be, how isolated the process of moving on can be…it’s not that I don’t celebrate every day. More than anything I feel overly attuned to the moments. Yet that is a sliver of the post-transplant experience. A mere part, a tiny fraction feeling, the part everyone wants, but not the whole of it. I don’t require or expect anyone outside of it to understand completely, or to DO anything about it. Yet, I need a way to honor this segment and the realization that this rebuilding part feels like my very own ash castle of a dinner party.
And maybe, just maybe, I also hope that knowing and sharing might help someone else to not trivialize the vastness and the depth people walk through, even when the outcome is in their favor. That there is still grieving in living. It might make you uncomfortable to know the darkness, but it exists. It's real. Powerful. Worthy of acknowledgment.
The favor we were lucked with, was born out of the fire of a life once lived, and died, and has come at a cost. I'd pay it a million times over, but I need to say it's a cost that keeps expecting repayment, long after you might expect.
And if you’re willing to sit in the ash pile? In the still darkness? If you're able to lay on the floor with hope in your heart, but silence it so the sadness can be honored? Then you’re welcome here at our castle anytime. There’s no fixing to be done, no spirits or walls to be lifted or repaired, but we’ll always accept help in carrying the load and sorting through the rubble of our gutted life. It's the less glamorous, but most important, part of rebuilding.
Much love.
