Day +364: Liberation
I’ve written before about anniversaries and looking back. It’s one of the things we humans do. The completion of a revolution is a catalyst. Oh, how we can latch on to the moment, wax on and reminisce! It’s easy to get lost in our own spin.
As I sit here and write this post — which on one level seems a bit obligatory — I realize that where I thought I’d be after this whole experience is not where I currently am. It’s a tough one to reconcile.
A year ago was transplant day. As surreal as that experience was, it seems small when compared to so many other things in our micro and macro worlds. Through a day of transfusion in which there was a mystery cake, weird science and references to James Brown, I got my best friend back, our children regained their sense of security and the misaligned puzzle piece that represented our collective eventually settled. We resumed our roles and functions. We had a lot of fun. We slipped back into old habits. All good. Some bad. Life, right?
Hyper-reflecting on the 8,736 hours between one September 9 and the next — and isolating myself in the process — I’d like to say the witness of this experience helped develop a better ability to be present. I could then twirl, fling glitter into the air and share with everyone the joy of everything, like say, dirt. Life altering moments, including the vicarious ones, are supposed to have that sort of result. Both Hallmark and the Internet say so.
But as I honestly reflect, I see that for me it did not. Lord knows I squandered more than I should have this year, especially when reminded again that living is so very unpredictable.
What held me back? Simply put, status quo. The rush to get back to ‘normal.’ The desire to experience ‘uneventful.’ The need to uphold ‘responsibility.’ Instead of looking up and living out I retreated into the daily grind.
Damn, that’s a shame. Even the rough parts of the shared journey serve up shinny pebbles. Somehow I managed to cruise right by and miss this one. I left dare on the road and ran straight to safe.
Day +364. It is over. Dave is great, ahead of the curve in so many ways. His doctor has given him the next set of orders including, and most passionately stated, “forget you even had this transplant.” Go. Live. Be. Free.
That applies to me, too. It is time to be open and free. The memory of that day itself does not bring me joy so I am releasing it. What does bring me happiness and grounding is the result of that day and the fact that it is tangible in my here and now. Continuing to squander that would be a sin.
So, I put this out there and most appropriately feel gratitude for everything Dave and I — as a couple and as individuals — have received through this passage. It’s time to get up and dance. ~ Jacqui
Day +170 (Well, the morning after…)
Yesterday, February 26, was Dave’s 170th day post transplant.
I could post a picture of what transplant day looked like, but I won’t. It’s more important to see what day +170 was.
Pike 27, Woodward Theatre; Photo Credit: ORU Media
This post is about these men. And friendship. And the ways we all are connected.
The night was loud — a good, crashing loud. No one cried (thanks JN for celebrating that for us!) and without having to draw too much attention to it, the passage was felt. The fog and ice and crud on the window was swiped. Sure there was residue around the perimeter, but the center was wide open and clear. Raw and transparent. The darkness that shrouded was purposeful. It allowed for the electricity to spark and carry the room. On a cold night, people were sweaty.
These fab four re-entered a very sacred space together, connected, created and reaffirmed for all of us what it means to have each other. You can do things alone and there are times that you simply have to do just that. But when you have your brothers-in-arms at your side — not your wife, not your kids, not your parents, not your siblings — but those people whom you and the fates allow to be a part of your life for reasons both unknown and not, you realize that there is something really incredible — and most times indescribable — about simply being alive.
On stage, they were four grown men each with their grown-up personas and lives. But they were also breathing, thriving reminders of their younger selves — zealous, open, quasi-rebellious teens taking part in the cathartic release and empowerment that is rock n’ roll. We were witness to the moment and to an extent participated. But theirs was a crucible that was magical for them.
Dave Purcell, Pike 27; Photo Credit: ORU Media
Sean Rhiney, Pike 27; Photo Credit: ORU Media
Mike Fair, Pike 27; Photo Credit: ORU Media
Dave Killen, Pike 27; Photo Credit: ORU Media
I realized this morning that not one picture was taken of Dave and I together last night, and honestly, I find that incredibly fitting. This was his to have with his mates. Watching him have it was perfect. ~Jacqui
Day +34: Moving On
Finish line selfie.
Blood Cancer Center, Jewish/Mercy Hospital, October 13, 2015.
We broke the news in an obscure way on Facebook and in text messages to family. A black picture of nothingness entitled “Dave’s new self portrait.”
The news was received with a few vague replies and comments in return. And then, it dawned on people what we were trying to say.
Black is the new YES! Black is the new GOOD! Black is the new NORMAL!
The PET scan results came in today and they were as dark and black as Mammoth Cave. Nothing lit up on the scan because there was no cancer in Dave’s body to light up the images. No whammies. Not even one.
Definitely a different picture than what was recorded on May 29 when numerous spots glowed and flickered. It’s a pretty wild delta in a space of only 137 days.
Thanks, Jim for the clutch find. Had to use this meme!
So what exactly does this mean?
Well, first and foremost, Dave is officially back in remission. The rounds of RICE followed by the scorching week of BEAM followed by the stem cell transplant officially kicked the recurrence of Lymphoma out of his system and restored his being. Since transplant and those tepid early + days, his counts have risen and continue to move into the accepted range. And while he still needs to protect himself and take precautions, he doesn’t need to be a complete hermit. He can get out and about a bit more. He can loosen up on the diet restrictions a bit. He can get back to doing the things he likes to do and living the way he likes to live.
There will be days when his energy is low and there will be monitoring, certainly. Heck, there has been some form of monitoring since 2010. But I don’t think we are going to have the super-steeped moments of anxiety (or, as our friend Kevin likes to say, ‘scanxiety’) that have led up to test dates in the past. Life is too sweet and too fleeting to waste living under the self-imposed burden of ‘what if.’ Been there. Done that. Wept those tears. Cathartic as those jags were, breathing without pressure is much preferred.
The kids are both dazed and ecstatic with the news. Each of them internalized this round of recurrence and rebuilding in unique ways. Each of them sat within their own space of uncertainty that neither of us can ever imagine. Each of them were troopers and tender hearts, propping us up when needed and taking on more than we ever fathomed they’d have to at this age. For them, this night is truly special.
I can’t speak for Dave but I am simply experiencing a wave of calm and peace. It feels good and I will take it and have it for as long as it is mine. The reality is – as we’ve been reminded a few times now – in this life, we can only control what we do, think and say. So I will be grateful for this moment and accepting that what comes next is simply what comes next. Love with abandon.~ Jacqui
Day + 27: Silver
Today is our 25th wedding anniversary.
When I sit down and think about all the things I can think about… all the memories… well, it gets a little overwhelming.
But when I focus on where we were and what we were doing 25 years ago, there is one particular moment of the ceremony that I remember with such vivid clarity.
It was this very moment. We were told to turn, face each other and join hands. We were in the chapel of the convent on my high school campus and we were standing there, exposed, in front of our families, friends, a priest and a monsignor, a bevy of nuns in the choir loft and really the world. It got very quiet and I realized with my heart thump, thump, thumping, that there was one thing I really, really wanted to do…
I wanted to push his glasses up.
Dave and I were holding hands tightly and as we squeezed, his glasses began to slip. What the heck was I supposed to do? I didn’t want to let go because I was convinced that if I did, the super Wonder Twin powers we were conjuring up at that very moment wouldn’t take and we’d be in trouble someday. (Seriously.)
But those glasses. Those glasses. They were slipping.
The priest had us repeating after him and I remember that. I remember Pachelbel’s Cannon in D being played by the string quartet behind us. All lovely, really, but those glasses! My word… they were going to fall off his face. And he looked a little uncomfortable.
All I really wanted to do was gently push them back up into place. But I couldn’t let go.
Twenty-five years later… the older me looks back at the younger me and wonders, with all I know now, would I take that chance and let go for a second to give a little comfort, show a little tenderness? Is it because I didn’t let go that I’ve learned how to be kinder and more compassionate, to both give and accept love? To know that sometimes you really do just need to hold on?
Like many other mysteries, the world will never know…
Day +16: The Process of Assimilation
Today is Friday… day +16. Dave left the hospital on Monday… day +12. It was a bit sooner than anticipated given how he was feeling mid-last week, but it was a welcomed, quiet event. The nurses told us that when the engraftment process latched, we’d see quick results. Counts are rising. All is well. And while the brunt of the big stuff is over, there are still a myriad of appointments at the hospital, some in-home care things we do and a slow climb back to normalcy. The transition is amazing when you think about it. It’s done.
It has been nice being home and being quiet with Dave as he settles in and rests. We have coffee (really!) and get the kids ready for school. Outside of medical appointments, the schedule has been simple: eat — nap — enjoy a movie or documentary on Netflix. Repeat. We are assimilating — absorbing experiences, both past and current, adapting, adjusting.
Keeping it simple has kept us both from trying to do too much. Keeping it still has helped us both to listen to what we need to hear. Sometimes we talk about all of this… the summer, the phases, the nineteen days in a hospital room, all the people we encountered, the experience of re-entering the big, colorful world… but mostly we just talk about other things. It has been tender and a bit surreal. Sometimes it feels as if none of this happened.
Interestingly, somewhere in the process, ‘Roger’ slipped away. As I think about all the things I’ve felt since May, all the things that have rumbled through my brain and all the talks Dave and I have had, at some point, recognition of the cancer itself simply stopped. I’m not sure what that means, really, and perhaps someday I’ll take the time to figure it out. But it is somewhat telling, I think, to realize this. Our focus swiftly turned to tearing down and building up — dealing with the symptoms and reactions to those two things. The salvage and the salvation. Why ponder over the catalyst?
And maybe, that’s just what we all need to do at this point. We made it through. Not just Dave, myself, Brandon, Jameson, Tessa, Dave’s family and mine… but all of us. We. Throughout these posts and phone calls and private messages and video clips and cards and songs and private thoughts, the panels of our universe aligned and fused. We fumed together. We cheered together. We cried in the dark together. We laughed at bad jokes together. We held memories and made memories. Together.
We changed and now we must assimilate. It’s all good.
Stay happy people. We love you and thank you. ~Jacqui
Day +10: How DID he do this?
Not bad for a guy that is on day +10.
Medical marvel or sneaky dude with friends who watched Oceans Eleven too many times?
The world will never know.
But what is apparent — someone really wanted to make sure his Brew Hog requirements for 2015 were fulfilled.
Bed alarm be damned.
Must be the coffee.
Taunting the nurses with a sweet addition to the I.V. pole and posting a new daily number…
Surveillance images from the party pad. These people sure do look guilty.
He even disguised the Bud can. Nice.
Day +8: Thursday Goes Like This
I was a bit wary on Tuesday when one of the nurses told me Dave would start to feel better soon.
I still felt wary on Wednesday when I popped in for a quick lunch visit. Dave looked rough and didn’t want visitors. He told me he felt like he had been run over by a “truck, then a bus, then another truck.” And that was the nice version. He was officially in ‘The Bottoms’ and it seemed like he’d be there for awhile. His numbers were down and he definitely had a fever. Mentally, I prepared myself for a long stretch of days.
But oh, what a difference 24 hours, some antibiotics and stem cell voodoo can do for a guy. It is safe to say that as Thursday wraps up, someone is feeling a little bit better.
Dave’s counts are starting to climb. And while he did receive another blood transfusion at daybreak, he also had a cup of coffee. That, seriously, is a big deal. Nurse Brian checked in on Dave this morning and hooked him up with first pour from the nurse’s station. I never thought I’d be so thrilled at someone else bringing Dave ‘first pour.’
These nurses are amazing. They know their stuff and they know what little things can take a patient far. I’m so overwhelmed with gratitude for Dave’s care team and for where he is tonight. Still a long way to go but progress is being made. Thanks for all the encouragement, love, support and good energy this week. It’s working! ~Jacqui
Day +6: Blerg
When counts are down, we mask up. That’s just the way it goes. Even Chippy, Dave’s mascot, knows the drill.
Dave’s numbers fell even further today — some hitting rock bottom — so he got yet another blood transfusion and his first platelet transfusion before breakfast. Following the footsteps of other rock legends, he chased said transfusions with Frosted Flakes. Hey, whatever works, right?
The stem cells should start their stem cell voodoo here real soon. Until then, keep your masks on and your spirits high, kids. And if you can, make that date with your local blood bank. Donations rock. ~Jacqui
Day +5: Night into Morning
“Going away, away toward the sea
River deep, can you lift up and carry me
Oh roll on through the heartland
‘Til the sun has left the sky
River, river, carry me high”
— Peter Gabriel, Washing of the Water
It has been five days since Dave’s stem cell transplant. A lot of things have happened and he’s entering the low point of the cycle. Numbers are dropping just like the team said they would. He’s uncomfortable. His appetite is gone. He’s had one blood transfusion and from the looks of his counts on the tote board, he most likely will need another soon. There is a fringe of fever so nurses hover, constantly checking his temperature with antibiotics and culture swabs at the ready. The pivotal balance of this entire journey continues.
Again, all things expected and as explained. But after such a strong start, it is difficult to witness the dip. He has to ride this out. We both have to trust the process.
My husband is sick. He is keeping a strong front but his system inside is fragile. Relinquishing everything and every thing to this statement is hard — hard because it is true. Sitting in the dark of his hospital room, there is a void and it is enhanced by this truth echoing in my head. I feel small especially as I watch him sleep.
Dave had cyclical low days during this first round of Lymphoma with the CHOP chemo and again, some minor post side effects a few days after each RICE chemo treatment in July. For those low points he was home and we were able to manage as a team. But this is different. Bigger leagues. Different scenario. The effects of six days of chemo leading up to the transplant are being felt and seen. Similar to an earthquake in one region that sets off a tsunami in another, the latent response is difficult to reconcile. I have to remind myself that this is the chemo hitting and not the transplant. Until those stem cells remember who they are, where they are and what it is they need to do, it is all a matter of recalibration, waiting and yes, riding out the storm.
I didn’t anticipate being with him tonight as my job has been to keep things stable for the kids and maintain a quasi-normal life/work existence. But given the way he was feeling, I decided to run up for a quick check in after dinner. Instinctual? Perhaps.
Dave had another fainting spell while he was up on his feet with his nurse. His first happened on Thursday resulting in a fall.
This time I saw it happen. I was stunned, frightened and rendered useless. Somehow his nurse held him up, yelling for help, while I was there, frozen. It happened so quickly. One moment he was speaking then he went slack.
They’ve determined that it is a blood pressure situation — another reminder of how hard his body is fighting to realign itself. He needs to stay in bed while he heals. His freedoms and independence are on temporary hold. Relinquishing everything and every thing to this need is hard, too. But he is resting now and that is good.
I really should get back home to the kids but I don’t want to leave. I’m toggling between two different realities, two very different regions, two different manifestations. Same storm. I’m grateful for the extensions I have in both nurses and family who are there to help especially during the times I feel most torn and useless. It truly is a pivotal balance. ~Jacqui
Day Zero: Re-Entry
The stem cells are here! The stem cells are HERE. And they even came with their own crock pot. It is truly time to get this party started. Congratulations, Love. I’m very proud of you.
Nashville or Bust 