Nashville or Bust

The trip that started a longer journey

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

D minus 3: You’ve Been Asking

HELP on speech bubble price labels

I promised people that when I figured out the hows, whens and whats regarding help for our family during the days of treatment, etc., I’d let people know.

I’ve done a horrible job with this.

When I sense the question coming, I try to dodge it as soon as possible. I’m uncomfortable with it and feel that my inability to respond, or perhaps my overt change of subject (“Look! Squirrel!”) has hurt some folks. It isn’t a pride thing. I am humbled by the offers and honestly am rendered speechless.

I did a lot of scrubbing yesterday and a lot of thinking. A LOT OF THINKING. I was trying to figure out why accepting help is so damned hard. Why can’t I answer the simple question of “what do you need?” with any sort of direct answer?

Then it dawned on me… the only thing I need (and want) is the return of Dave home to us. That process is in motion. Dave is where he needs to be, doing what he needs to do. He has incredible professional care and more personal support than can be articulated. It is amazing what that sort of love medicine can do. The process is slow but it is working. There is peace in that.

When I broke it down further (still scrubbing, by the way) what I came to was this: it is hard for me to accept help for that which we don’t ‘need’ when I know so many, many, many others can use a similar helping hand — and have very little or no support system to get them through the crunch.

Despite the one passive aggressive letter from the insurance company that said, “we may or may not pay for the transplant” we have incredible benefits. By the way, the woman who wrote the letter personally called Dave a week later to let him know they were covering everything. It was all very strange but it is covered and that is all we need to know.

Add to this, Dave was able to re-work his schedule at work so that the time he is away from the college is his term off. Translation: we didn’t have an abrupt loss of a complete salary. Again HUGE in the world of diagnosis and cure. It illustrates to me that even with a few months of savings in the bank, a situation like this can devastate an individual and a family in a matter of weeks. Some never recover.

Maybe this is why it is hard. I look at the logistics and we are not in need of anything except for love, support and understanding. And you all have come through with these gifts in droves. Yes, with Dave not here, our schedules are a bit different but I’ve re-arranged things with my employer to be home a bit earlier. This allows me to make dinner with and for the kids. It’s a bit of healing and growing for us, really. We use Skype to bridge the miles between here and Jewish Hospital so we maintain that face-to-face contact. I run up and visit at lunchtime. His parents and sister see him at other hours.

Sure, all of this will start to feel like a drag in a week but it is so very temporary. We can do temporary.

But I know all of you well enough to know that you are sitting there saying, “But Jacqui… we want to… NEED to… do something.” It is a natural response. So I have an answer.

Let’s channel some of the blessings and love that we all have and want to share in ways that will make a bigger impact.

1.) If you can, donate blood. In speaking with some of the folks in the unit, I learned how much blood and platelets they go through in caring for the patients in the blood cancer center. Call Hoxworth and make an appointment. You cannot give directly to Dave but you can give in his honor. This is a big need. It is likely that he will need some sort of transfusion through all of this. It is heartening to know that someone unselfishly gave this precious gift up so he can keep going.

2.) If you can’t do the above, how about diverting the money you would have spent on a meal for us to someone who could use nourishment and other aid? Play It Forward Cincinnati is a local organization established to help local musicians in a time of crisis. Many of those who heal our hearts and souls with their wonderful gifts do not have adequate insurance. This is our chance to help them out.

I did a quick look at the tab accrued to date and almost retched at the total — and all of this didn’t include last week and the current hospital stay. It is worth every penny but it saddens me to know that there are others — possibly some of the folks on the floor with Dave right now — who are worrying about this avalanche of debt when really, they should be focusing on healing — body, mind and spirit.

Together, we can be angels and help others who really need it be comforted and feel loved. It could be just the thing that keeps them here on the journey with us. What do you say? ~Jacqui

 

 

 

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

Stand 

Driving into work today, I believe I was sent a little musical gift from the Universe.

Timed perfectly to round out my commute and end as I pulled into a space, R.E.M.’s “Stand” filtered through the speakers via the radio. A commercial station, even. Fancy that.

Stand in the place where you live. Think about direction, wonder why you haven’t before. I’ve heard this song a zillion times and for the first time, I attempted to decode it. What was Stipe trying to say? Who was on his mind as he penned this 3:10 nugget? Was he directing this at someone or something?

Stand in the place where you work. Think about the place you live, wonder why you haven’t before. What a strange song, but infectious. I did something I haven’t done in a long time. I started to sing along.

Modulate once. What the hell. Modulate again because it is fun.

Stand in the place where you are. 

STAND IN THE PLACE WHERE YOU ARE.

Your feet are going to be on the ground. Your head is there to move you around. 

I smiled. Dear lord. I got it. He wrote this one for me. And as I pulled the key out of the ignition, I laughed.

So stand. ~Jacqui

August 19, 2015 Posted by | Everyday | Leave a comment

Greetings from the Lido Deck

Ahoy. Dave’s platelet count was up so he’s boarded the USS R-ICE for Cycle 2. 

He’s currently kicked back in his favorite recliner, snug as a bug, and trying *not* to hear the soft rock favorites that continue to play in the background. (We’ve heard them all, including “The Piña Colada Song”. Twice.)

All is going well and he should be going home soon. A night of hopeful rest and then an early day tomorrow at the hospital for two days of inpatient infusions. We refer to that as Summer Camp. Dave gets to experience a lot of needlepoint and archery among other things.

July 28, 2015

July 28, 2015

All fun analogies aside, I am always humbled with my hours here in the chemo lounge. Dave is very strong and I am grateful. There are others, however, who look so frail under their blankets. Eyes closed, sleeping as they can or quietly visiting with their counterparts one chair over. I hold a lot of people in my hearts when I’m here and I wonder how they are doing when I can’t see them.

Complementing them are the amazing nurses who have so much to manage, yet always manage to spend that extra minute listening, encouraging, smiling. I heard one quietly tell a patient, “YOU are my hero. You are so strong.”

I don’t wish this experience on anyone but I have grown to appreciate my time here. There are so many things in this world we should celebrate and enjoy. They are simple things, really: sunshine, smiles and warmed up blankets included. More soon. ~Jacqui

July 28, 2015 Posted by | Dave, Everyday | 4 Comments

Live in the Layers

11165324_10152888930444607_4733935184669784274_nYesterday, Lori, our neighbor and friend, transitioned from fighter to angel. She was definitely one of the good ones and her time here on earth too short. I’d be lying if I said her diagnosis, cancer journey and eventual passing hasn’t had an effect on me. It is hard to reconcile, really.

As July 22 began to wane, Dave and I ventured out onto our patio and stayed until late in the night. The weather was pristine. It had been all day. We listened to music. We let flowers and the birds surround us. We watched other neighbors walk in the low evening light. We sat in the sound and we sat in the silence. And at one point, we danced.

Our patio was the last place we had seen Lori just a few weeks prior. She stopped over on her way home from a walk with her husband and son. Her steps were slow and she wasn’t feeling well. But she wanted to see us, to acknowledge us, and perhaps simply say good-bye. It seemed right that we sat out there for a good while last night. Her spirit was strong.

It was hard to get through today. Hijacked by timelines, commitments and necessities, I wanted to simply stop, go back to the quiet and drift some more. But life called and as I went through my day, I managed to find stolen moments to ponder a bit and appreciate the impact of shared journeys.

Lori didn’t realize this but since her diagnosis in January, she provided a number of lessons to me. Mainly, she reminded me that no matter what, we need to live the days as they are presented to us. We need to live them, not exist through them. No matter how shiny or soiled, we need to live them.

We need to stay curious. We need to ask questions. We need to judge less, listen more. We need to see the beauty, the truth, the authenticity that is in front of us, given selflessly to us. We need to selflessly give in return. We need to recognize and celebrate passion — our own and that of others. We need to embrace difference and texture and figure out ways to wear them beautifully and brilliantly like a signature scarf. We need to be comfortable in our own skin, even when it seems imperfect due to life’s experience or misguided expectation. We should love with abandon and grieve without shame. We should taste and smell and savor. We should be gentle and kind.

Last week, the day after her birthday, I recalled a poem that I had experienced for the first time in May via Krista Tippett’s blog, On Being I vividly recall how it made me think of Lori who, at the time, was seeking different treatment opportunities. “The Layers” by Stanley Kunitz is raw and truthful. It recognizes imperfection as much as success. All of it is important. All of it makes us who we are. We shouldn’t disregard anything. It all has a purpose.

birdaki8Thank you, Lori for reminding me to live in the layers, not on the litter. I do not understand all these transformations and I’m not always willing to accept them. But they do mean something and for that, I need to try. Here’s to loving and living with sweetness, compassion, acceptance and grace. Your star will always shine bright. It was a gift to share some days. ~Jacqui

 

July 23, 2015 Posted by | Everyday | 5 Comments

Chemo Bouncer: “Sorry Dude. I Can’t Let You In.”

IMG_2927Who really wanted to deal with chemo on a pretty day like today? Obviously, Otis the cat had it right.

Dave showed up ready to go but after the initial round of standard tests, his platelet count didn’t make the cut. Officially rejected from the Chemo Lounge.

If I didn’t have clients in town and a crazy 36-hours of work ahead,  I’d say we would just cut loose … like to Nashville for lunch.

But that’s not going to happen. So I work, Dave rests and we try this whole Cycle 2 thing again next week.

Thanks for all the lovely thoughts and posts. Continue to love on the people you love. ~Jacqui

July 20, 2015 Posted by | Dave, Everyday | 4 Comments

Put The Pencil Down

Z0012965Remember building a cabin with Lincoln Logs?

You had to think in layers… cross-hatch support systems… and overall project vision all at once. You couldn’t rush things. And sometimes what you thought you could do needed to change mid-build. (Dag — I really wanted a window in the wall… )

I had stacking and cross-hatch flashbacks during the follow-up meeting with the stem cell transplant team at Jewish Hospital today. It’s one thing to juggle a *plan* with a single medical team. Try juggling two at once while factoring in the natural thoughts about work, kids, the home fort, etc. Things get precarious. So many variables and contingencies. So many needs to keep things fluid. So much desire to align steps with dates. Too many realizations that I can’t align all the steps with all the dates right now.

The general sketch of two plans that intertwine is there. The detail — what I thrive on in times like these — well, it will fill in as we go.

Realize that for me, not having a complete, concrete action plan with circles and arrows —  the kind that can be written out and visualized —  is hard. It makes me twitch. Feelings of helplessness and anxiety start to rise. Synchronized schedules help me cope. I think I’ll need a bigger white board come August.

And that, my friends is most likely when I’ll be reaching out for a bit of assistance. Right now I can handle. August looms.

It’s going to take some coordination to help Dave get through all the milestones he has on the horizon while making sure that everyone else has what they need and everything else that must happen gets done. (Um… like a new school year?) Touring the facility at Jewish today put a lot of things into perspective.

Aside from this, and more importantly, Dave is doing incredibly well. Cycle One brought only fatigue as the main side effect. If you didn’t know, you most likely wouldn’t know that Dave is in active treatment. This initial part is different than last time. He’s eating, doing things around the house, taking walks and even had a night of band rehearsal with the Pike boys last eve. It was good to hear music… and laughter…and nonsense.

This weekend we’ll try to get ahead of a few things on both the home and work fronts as we mentally prep for more. Dave is scheduled to start Cycle Two of RICE chemo with his base oncology team Monday. Like last week, this will cover three days. Hopefully this will set him up for a nice segue into the second plan but that can’t be determined right now. Certain logs need to fit into certain grooves first. Variables. Gah.

I’m trying. I really am. ~Jacqui

 

July 17, 2015 Posted by | Dave, Everyday | 6 Comments

Starting Gate Selfies

IMG_2878So, keeping with tradition, we start each journey and each race with a picture or two. Dave is currently in his favorite lounge chair, hooked up and well under way with Day One of Cycle One of RICE. Capper for today will be the bone marrow biopsy. Let’s all hope for clean marrow!

Tomorrow he’ll be admitted for an overnight hospital stint to round out this first lap.

Will post updates as they come. ~Jacqui

IMG_2879

July 7, 2015 Posted by | Dave, Everyday | Leave a comment

Strides and Life

Hello.

The blog got a bit dusty and I realized since my last post, I may have left a few people in suspense. I had every intention of capturing the Flying Pig experience in a post (and I may still do that) but the right time to do it was in the hours after the race. And I was sleeping. 😉 But I can sum it up and  say I did it! I would not have been able to do it without my crew nor Dave and the kids. It was wonderful and I loved every minute of it. (Including getting stuck in the porta-potty at mile 10. It all went downhill from there.)

Meet the Step Sisters Half Pig Squad. From training to the starting line -- an incredible journey!

Meet the Step Sisters Half Pig Squad. From training to the starting line — an incredible journey!

post race

Best bling ever!

And as big as May 5 was — focus around here is on something bigger. Our annual give cancer the boot night is in three weeks. Yes, once again, Dave has rallied us to take the track for the 12-hour Relay for Life. Since planning our first endeavor (just weeks after his treatments ended) Relay has become a very special time for Dave. Note the picture… our fearless leader takes this stuff seriously. It is when he truly celebrates the theme of “more birthdays” and celebrates his own.

dave leading team

Dave leading our team out last year. And yes, he is a man with a will to survive!

Unfortunately, our team has another purple survivor shirt in its ranks… Bill, Dave’s father, was diagonosed with prostrate cancer earlier this year. We also have more friends and loved ones whom also have been diagnosed and are currently in treatment. I don’t need to tell you what a beast cancer is. We all share in its experience. Perhaps that is why we really like to give it the boot (and, ahem, other things) while we stomp around a track through the night. Relay has so many symbols. Similar to the marathon, it truly is an experience with many moments and many emotions.

Beyond making a statement, why do we do it? Why do we drag ourselves, family, friends and the tent out to a high school football stadium and commit to walking through the night? Simply — we do it because we know at that time and at that hour, there are so many around us who can’t. We do it for them. We make the effort to raise funds to aid in treatments, programs and research. We do it so hopefully all of us can have less touches with the cancer beast.

If you want to be a part of this event — we certainly would welcome you with open arms and hearts. You can walk with us… you can give us a pledge of support… you can bring us coffee in the middle of the night. If there is someone special you would like Dave or I to personally run for (and note… I said RUN) — we are doing something we’ve coined “Laps for Loved Ones” between the hours of 10p and 6a. Simply pledge that person’s birth year… (1950 = $19.50) and let us know who and what hour and we’ll be honored to do the honor. Dave is going to put names on his shirt and we’ll be snapping lap pictures. If you’ve already made a team donation and have someone you want us to honor in this way, just let us know. You can message us via the blog or email or phone or FB or Twitter or dog with a note…

In the 11th hour of Relay 2011. Dave had just finished chemo and radiation.

In the 11th hour of Relay 2011. Dave had just finished chemo and radiation.

The link to the Nashville or Bust team page for Relay is here. Your support over these past few years has been priceless. You can’t do these things alone. As we rally to support others and remember those in the bigger circle whom we love, any continuation you can give is like melted butter on a biscuit. Thanks and Love to you! ~Jacqui

May 31, 2013 Posted by | Dave, Everyday | Leave a comment

Good Times

This is a very quick post as I’ve got to get back to work. But knowing that some of you only follow us via the blog, a few recent shout outs. And yes, a bigger post to come.

It’s been a week of good times.

I’ve started my new job at WNKU-FM and am very much in my element and incredibly happy. That’s not to say the days of yesteryear in advertising were dreadful, but I realized I grew out and away from that daily environment. As I said in my resignation, “It’s not you, it’s me.” Still, lots of love to the crew at Creative Department as they are incredible people.

Brandon has rounded out his final classes of the term and is getting set to take exams and come home for break. He’s still very jazzed about what he is doing and doing incredibly well in the process. Knowing his drive is all about caring for people and assisting them at what could be their scariest moments is something that still makes us take great pause and feel overwhelmed with pride.

Jameson has transitioned to the High School in great stride and secured a place once again on the varsity bowling squad. His average continues to climb higher and the team is currently first place in their division. And darn if he doesn’t look good sporting his varsity ‘H’ on this school jacket. He continues to dabble in music and drool over cars. Oh, the plan to get that ’66 Mustang with Dave is still going strong.

Tessa is our funky girl and so excited with the coming of Christmas. She believes with so much enthusiasm that any Scrooge near her would certainly melt. She’s doing well in fourth-grade — reading up a storm, playing basketball and writing for the journalism club at school. Her energy is infectious.

And that brings me to Dave and really the main reason I needed to post today. Yesterday was supposed to be his semi-annual oncology appointment — you know, the time when he gets the results of his scans and such. As fate would have it, his doctor was unable to be in the office and needed to reschedule for next week. And before you say, “No way! No fair!” the kind nurses at the office were able to tell him that his scans all looked good and his status was stable. Woot! Remission remains. We’ll let you know if we learn anything more next week…

Until then, keep up the love, light and laughter. Enjoy the season as you celebrate it and despite what the big world may be doing out there, continue to celebrate your own little good times. They, in the grand scheme of things, are really what matter. ~ Jacqui

December 7, 2012 Posted by | Dave, Everyday | 2 Comments