Nashville or Bust

The trip that started a longer journey

Twisted Santa

Brandon is finally home so tonight we were able to finish our gift exchange for the holiday. After the flurry of paper, there stood one last box. It was from Santa. The note simply said: “When the three of you are finally together, gather around the final box and open it. You’ll have to work with it a but the surprise will ultimately be revealed.”

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As Brandon aptly put it, “Son of a Nutcracker.”

Out spilled 256 puzzle pieces. The table was cleared and the three got to work.

For close to an hour, they twisted and turned pieces, wiggling them into place without any sort of guide. The grumbles were priceless. We tried hard not to laugh or help. Do you know how much fun it is to watch people work a puzzle without any sort of prompt? For once, some assembly required was all in their court. Oh, the JOY!

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The picture finally came into focus and their expressions: priceless.

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This summer, we’re off to the Pigeon River to do something we’ve never done before. We can hardly wait. TOWANDA! ~ Jacqui

 

 

 

December 26, 2015 Posted by | Everyday | 4 Comments

Waking Up to What is Here

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I’m not sure why this holiday season has been so hard for me.

Well, maybe I do, but I just don’t want to admit it.

With so much to be grateful for, so much to be happy about, I entered the holiday season at some point in November with dread, anxiety, depression and numbness. Work was way too much and it kept compounding as the year got shorter. It provided a nice way for me to hide some of this. There was no time for me to get into the merry bustle when it seemed like the last quarter of the year was a constant battle of slaying dragons…and the dragons most times were winning. So I got lost in it and that made me sad. It was an ugly cycle. I know that sadness dripped over to the family. Hard to reconcile.

Dave’s most recent post was a call to release and turn this blog back to whatever it is supposed to be. I grin as I write that statement because, well, this is a rambling little place that is more cathartic than thematic.

And before I go there — to that other place of supposed to be — I think I have one last post to write about what was these past few months. Maybe by getting it down I get it out. And then, I can turn things around and journey into the new.

During this past year, I realized I begun to question how we as humans envelop ourselves in faith and in particular, of the religious variety. Very hard to say when so many of our friends and families sent up beautiful prayers on our behalf. Harder still when so many voiced that as our family news turned from uncertain to celebratory, these prayers had been answered. I admired this  faith — the conviction. But it was hard to return that feeling.  What was I missing? The prayers that were sent up for us were answered. But the prayers that were sent up for three other spouses that sat beside me in the cancer boat were not. They lost their loved ones. I didn’t. Harmony and discord. Gratitude and guilt.

As the days turned into holidays which are rooted in so many different flavors of faith, and ugly clashes and world events invaded our every conversation, I felt like I was in a hall of mirrors with the floor falling away. So many reflections and none of them seemed right to me anymore. Foundations of what I thought I believed in were slipping. As scary as these feelings were — and are — they carried a calming effect. The nothingness provided one less thing for me to worry about. Or perhaps…

Faith. Per the Google it is described as “confidence or trust in a person or thing; or the observance of an obligation from loyalty; or fidelity to a person, promise, engagement; or a belief not based on proof; or it may refer to a particular system of religious belief.”

I just don’t know. I believe in the promises I’ve made to Dave and the kids and I realize that I have room to demonstrate those promises more — not out of obligation but out of want. They make me whole and that feels right. I’ve got that faith and fidelity. Beyond that, it gets a little fuzzy.

I believe that there are things that happen that we just can’t explain, both good and bad. I believe that we surround ourselves with people who buoy us and we in turn buoy them. I’ve always believed in angels on earth and spirits that guide. But are these things due to the intercession of a deity or just plain human interaction and intuition? Am I wrong for casting away so much of the communal aspect of faith and making my world small? Is my question of faith a form of fear — of getting caught up in something that is so much bigger than myself that I lose myself to mob mantra — or is it a declaration of self-assurance — that in order to get by I just need to keep my immediate, tangible world in focus and deal with the outcomes as they may be?

I woke up this morning to quiet and for once I didn’t feel the weight of the days. I didn’t need to go to work. I didn’t need to do much of anything because Dave and the kids tackled the majority of preparations for this weekend. I succumbed to the head cold that I held off for the past week and wandered out to the tree to stare at it for a good long spell. Thus the space to think.

As I gazed on the tree that is a history of our family, friendships and love of the past 25+ years, I couldn’t help but think of this song. Not a traditional carol but an awareness of where I am now. And I think that this is okay because I also believe that we should ask questions and find the spaces of understanding among ourselves and each other… even when we feel that we are too busy to try or too staunch in our own convictions to comprehend another perspective.

I appreciate this morning’s dark for helping me think and feel but I don’t want to be captive to its seduction and completely slip away. Amid this uncertainty, this season, this now– I’m yearning for light and love for those close to me as well as all of humanity. People need peace and security. It’s a big wish that I have and I can be part of making it true by being present for those I love. And while together we are celebrating this season, I am having a hard time saying ‘Christmas’ this year because the word has become so polarizing in both the big and little spaces of my life. This is a first for me and maybe by admitting it, I can release some of the anxiety and dread that has enveloped me of late.~ Jacqui

 

 

December 24, 2015 Posted by | Uncategorized | Leave a comment

Day +100: A Post from Dave

Screen shot 2015-12-18 at 6.40.45 AMIt’s been awhile. Actually it’s been 106 days since I posted here. It was day -6 and I was just settling into my hospital room and the idea of this treatment and transplant when I fell asleep listening to music. I sit today, well on the other end of the teeter-totter, and while the memory of how I got here is still present, much of the hospital stay and immediate aftermath is a blur. The view from my “rear view mirror” is pleasantly hazy.

Today marks day +100 for me in this new version of DK2.0. While I am aware of this, I am happier to have Brandon coming home for his birthday on this day than I am eager to examine my progress up to this milestone. Christmas will be here soon and the start of a new year (which I am really ready to welcome in) and I’m more interested in the events, family gatherings, music recitals and such than I am of what this milestone represents. The simple truth is that for reasons beyond my full understanding, I feel really great and am truly grateful. With the rear view a blur, I am focusing on what is in front of me.

It took an army of support and an amazing medical team to get to this point but most of all it took Jacqui. I can’t and would not want to ever try to put myself in her shoes but without her smile, sarcasm, support, tough love, smuggled coffee, patience and amazing strength this would have been a very different experience. I have no words really…just love.

“In spite of ourselves,
we’ll end up a’sittin’ on a rainbow…

Against all odds,
honey we’re the big door prize”

Day 100. That does feel pretty good to say. In the journals and transplant literature it is a big deal. I don’t take that for granted but instead of looking back, I am spending it sipping early morning coffee with Jacqui, making breakfasts and lunches for the kids and getting them off to school and continuing to get the house ready for Brandon’s visit and the holiday…you know, the normal stuff.

It’s time to return this blog to new ideas and future plans.

Here is to love, laughter, friendship, music and adventure in the New Year.

Cheers-

dk

Added Note:

In Jacqui’s last post, Maya the cat was in a very bad way with no real answers to be found. We were on the brink of losing her. Yet somehow, she has recovered in grand fashion.

Jacqui wrote in one her her entries: Maya came into our lives for a reason, at a time when, in retrospect, we didn’t need to be dealing with a cat with issues. Or did we? It’s obvious she continues to be in our lives for many more. She may be small and compromised but her presence is big. She is truly a strange little beast…”

We are all small, compromised and strange little beasts if you really think about.

 

Peace and Love

December 18, 2015 Posted by | Uncategorized | 2 Comments

Day +60: Hope Gets You Through the Night

“Words are tears that have been written down. Tears are words that need to be shed. Without them, joy loses all its brilliance and sadness has no end. ” — Paulo Coelho, Aleph

Since reporting on Maya two weeks ago, we have shed both happy and sad tears. It has been a jumble of days and I think I can finally write some of this down.

Our reunion with Maya was a happy one. We prepared ourselves for life different and were grateful that she was once again home. We all took turns sleeping with her in the spare room and helping her readjust to life Killen style. If felt good to hear her purr. She had gone through the ringer. Hospital stays are no fun.

After being home for a few days and thinking the worst was behind us, we noticed some new changes in her. She was having even more trouble moving. She wasn’t eating that much. Then she stopped drinking and became jaundiced. That part seemed to happen very quickly.  We did some reading and really thought it was the anticonvulsant medication as some of these things could be side effects. Bolstered by friends mentioning that sometimes these sort of meds need to be adjusted, we brought her back to the animal hospital for a check-in and some help. Because she was dehydrated, Maya needed to be admitted and back on an I.V. More tests were ordered. We waited. Why is it never easy?

During one consultation last week, her condition became even more curious. Her vet was still trying to determine if there was some sort of cancer in the background that was triggering things. Ironically, the word ‘lymphoma’ was mentioned. The seizures of two weeks prior and her present situation weren’t necessarily connecting. Without a spinal tap and CT it was hard to say. Regardless, what became apparent after the new battery of tests was this: Maya’s levels were dramatically different and her immune system was under siege. Her red blood cell count was  very low — thus the anemia and the weakness in her hind quarter. Her bilirubin count was off the chart — thus the jaundice. Together, she was caught in a hemolytic process through which her red blood cells were being attacked and destroyed. She was put on prednisone to help her red blood cells stabilize and more tests were conducted on her liver. Once again, we had to wait and see.

These conversations with the vet were not easy. Too many familiar words and numbers. I started to wonder why this was happening… why was Maya carrying the brunt of all of this? What was Maya trying to take away? She come into our life at a particular time. All of this was happening at another particular time. Bookends. On one level it sounded like crazy talk in my head but on so many others, it made sense. Profound. Beautiful. But riddled with grief all the same.

Last night we spoke to the veterinarian again. The prednisone seemed to be doing something as her red blood cell count was up. However, even with appetite stimulants, Maya wasn’t eating. Because her body had gone into starvation mode, fat was being stored in her liver. Humans and dogs can go for periods of times without food as long as they have fluids to sustain them. Cats unfortunately cannot.

Brandon happened to be home and I was so grateful because he patiently translated all the medical jargon around hepatic lipidosis to us and with great care, to James and Tessa. Through many tears we decided to bring Maya home. We didn’t want her to be alone.

It’s been almost 24 hours. She’s drinking water and has taken some of the nutrition we have been offering her. I just don’t know if it is enough. So we wait. And try. And write. And cry. And hang on. We’re all feeling that awful type of hurt because reality says things don’t look great. But we’re also hanging on to that little sliver of hope because it is there. And that is what will get us through. ~Jacqui

November 8. Maya hanging out in a sunny patch: nature's bilirubin light.

November 8. Maya hanging out in a sunny patch: nature’s bilirubin light.

 

November 8, 2015 Posted by | Everyday | 1 Comment

Day +46: What We’ve Learned from Maya

This by far is one of my favorite quotes by Dr. Maya Angelou. I have it on my wall at work and try to read it everyday:

“I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I’ve learned that making a living is not the same as making a life. I’ve learned that sometimes life gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw some things back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

In late August 2010, we learned of a small Siamese-blend kitty who had been severely injured by what people believed was a car — either thrown from or hit by one. She was discovered on a porch a few neighborhoods over. The woman who was finally able to wrangle her, rushed her to a vet for help. This sweet kitty, approximately 10 weeks old, underwent surgery to save her leg. Her Samaritan paid for the surgery but was unable to keep her.

So we adopted her.

Maya, 2010.

Maya, 2010.

And that first night that we had her home, the five of us hurt our brains trying to come up with a name for this curious, little scared-out-of-her-wits beast who was to become a member of our motley crew.

It finally came to me and we agreed that it was so right… Maya. After Dr. Angelou, of course. We truly believed that even with such a crappy start at life, wanting to give and receive love would help turn things around for this pitiful kitten. That was our hunch.

Flash forward a few weeks and we learned that despite attempts, Maya would need to have her hind leg amputated. As she recovered from her second surgery — still very scared and uncertain of all of us — we learned of Dave’s first diagnosis of Lymphoma. The bad news always seemed to come on Thursdays.

From September 2010 forward those two — Dave and Maya — took care of each other while the kids were at school and I was at work. They bonded up on the big bed, slept and snuggled. They got stronger and by spring of the following year, they were each on the other side of their maladies. Life was better. Maya, while still skittish and unconventional in her own ways, turned out to be an incredibly affectionate cat who could hold her own against our other two crazy (and four-legged!) house pumas: Hannah and Otis. There were times she even attempted to take the alpha position away from Hannah. It didn’t work but the folly made us all laugh. She never let her handicapped position get in the way of living and being curious and joyful.

Birdwatching with Maya.

Birdwatching.

Sunny patch cat bomb.

Sunny patch cat bomb.

 

 

When Dave was diagnosed with Lymphoma again this summer, Maya was there for him. Intuitively, she snuggled and kept watch while he was home alone. And, as the fates would have it, Dave was there for Maya when she once again was in a bad way.

On Tuesday morning around 2 a.m., Dave found Maya at the base of our stairs having what he could only describe as a seizure. Something was really wrong. We had noticed that Maya had been a bit off — in a little feline funk — and we wrote it off as the weather, her being weird with Dave being home, or just yeah, she wasn’t feeling that well. But we didn’t take the signs as super serious. Or maybe — and more truthfully — I didn’t have the energy to go completely there with my thinking.

Maya had a few more seizures as I transported her to the 24-hour animal ER and was active with one as she was in triage. I really was thinking she wouldn’t make it and felt very alone in the pre-dawn. But the excellent team at the ER was able to stabilize her. I went home with some hope but also uncertainty. I wasn’t sure what sort of decisions awaited us.

She remained in veterinary care for four days. During that time they ran scads of tests. She had an I.V. There were daily consults via phone with her lead doctor while hypotheses were ruled in and out. Finally, on Friday night, we brought Maya home with a tentative diagnosis of epilepsy and a 2x day prescription. For all we know, she could have had seizures prior. She had been keeping to herself while the rest of us were focused on other things.

I’ve been watching Maya a lot this weekend. She’s different — but aware of where she is and who is with her. Her vision seems to be off a bit as does her hearing. She’s using her sense of smell a lot more to identify people and things. But she still snuggles and acts like this bad phase isn’t really a bad phase. Ah, she has such a strong will to survive — and to love. It truly is humbling and infectious.

Maya came into our lives for a reason, at a time when, in retrospect, we didn’t need to be dealing with a cat with issues. Or did we? It’s obvious she continues to be in our lives for many more. She may be small and compromised but her presence is big. She is truly a strange little beast… but we are better people because of her. ~Jacqui

 

 

 

October 25, 2015 Posted by | Uncategorized | 1 Comment

Day +34: Moving On

Finish line selfie. Blood Cancer Center, Jewish/Mercy Hospital, October 13, 2015.

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.

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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

October 13, 2015 Posted by | Dave, Everyday | 5 Comments

Day + 27: Silver

WT Powers

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…

October 6, 2015 Posted by | Dave, Everyday | 3 Comments

Day +16: The Process of Assimilation

looking-down-river-aaron-siebensToday 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

 

 

 

September 25, 2015 Posted by | Dave, Everyday | 1 Comment

Day +10: How DID he do this?

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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.

 

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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.

Surveillance images from the party pad. These people sure do look guilty.

He even disguised the Bud can. Sneaky...

He even disguised the Bud can. Nice.

September 19, 2015 Posted by | Dave | 1 Comment

Day +8: Thursday Goes Like This

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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

September 17, 2015 Posted by | Dave | 2 Comments