Nashville or Bust

The trip that started a longer journey

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

Direct from Dave…

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From the pain come the dream

From the dream come the vision

From the vision come the people

From the people come the power

From this power come the change

~Peter Gabriel

 

Day -6

I drifted off to sleep last night listening to a favorite record by one of my favorite artists. “Fourteen Black Paintings” was the last song I remember hearing and it was still gently swirling in my head this morning.

It is impossible for me to write or express the power, the energy, the love I feel when I return over and over to all of the comments, well wishes, words of encouragement and wonderfully funny sarcastic jabs you all have offered. And while Jacqui has and will continue to share this journey I felt compelled today to try to put words to page in an attempt to say thank you.

If you had asked me five months ago, this is the last place I saw myself. My thoughts and energy were focused on anything but cancer. After all, summer break with Jacqui and the kids was about to begin. I was enjoying the hell out my masters degree work, Pike 27 was set to cut a new record, and my summer students were really fired up and ready to have fun. We all know the sensation of putting the breaks on a project or plan. It happens all the time. But to slam the breaks on everything you have going on is jarring, harsh and brutal. And while confusion fear and concern have a way to mask the bruises of this sudden stop, an emptiness remains. Your energy fills that void. The moment you take to give me a push. It provides the motivation and the little distraction needed to direct focus on what is needed instead of what had to be tabled.

The last few weeks have really been a window into just how challenging and unpredictable this path is. After the two rounds of chemo with very little side effect we got the fantastic news that things were working better than expected. But like a sine wave, there is a trough for every peak in a cycle or series of events. A stark reminder that this is no sprint, but a much longer race with dark days, obstacles, traps and scary stuff out there.

But “from the people comes the power and from this power comes the change.” I was completely overwhelmed by the love and support from everyone last Friday at the Pike27 show and the Saturday that followed. I thought back to this early in the week and often. The feeling of so many kind hearts carefully lifting me up and holding me. I’m a lucky man. And then it happened again. A beautiful message from my sister brought that cradle back, lifting me and my family up one more time. I am truly a lucky man.

This power reminds me to live in the now. The bad days are out there, floating….shifting….waiting. They remind me to enjoy the goods days and not put things off. There are dark days ahead for sure, but this is the hand I was dealt. And by proxy, this is the hand my family was dealt and this is the hand my friends were dealt. While there is still a small place in my daydreams for how this summer could have been, you all have given me a beautiful, colorful window to look through allowing my thoughts and daydreams to drift through this change of seasons and onto next summer and what can and will be.

Look for the little things.

Peace and love,

dk

September 4, 2015 Posted by | Dave | 5 Comments

D minus 6: Check In, Kick Off

IMG_3090Today started like any other day, really. Coffee ritual: His mug on the left, mine on the right. His gets first pour with the powdered stuff. Mine’s more snobbish with half and half. Whomever is up first gets the coffee ready and brings the mugs to the bedroom. But his is always first pour. He’s a one big cup and done. I tend to refill… and then lose my mug somewhere in the house during the morning hustle. Ah, the serenity of automatic reflex. It wakes you up and gets you through.

As for the rest of the day, it went well. The team is incredible and Dave feels confident, supported and loved. Sure there is some anxiety regarding the new chemo cocktails, the long hike back to restored health and the inevitable loneliness that comes with a long stay such as this. But he is starting out in a good place. This thing is a mental game as much as anything else. The fog is the danger zone.

It took a bit of time to get up to the room then there were rounds, a smattering of check-in tests and introductions. We had lunch together and I had a chance to drop into a caregiver’s support session. It was the first time I sat in a group with people who carried the same expression I sometimes catch in the mirror. Waiting for chemo, we played cards. I stayed as late as I could until it was time to get home and start dinner for the kids. They checked in via Skype and we’re just keeping each other in check as we test out these waters.

In a few hours, it will be time to start the coffee but the routine will be a little different. Dave will only be able to have coffee from a styrofoam cup. and it won’t be his beloved, salt of the earth Chock Full o’Nuts blend. I can have first pour if I want it, I can even brew some of my fancy stuff, but that will feel a bit strange. When I inevitably misplace my mug in a random spot, the kids will share in the laugh. We’ll muddle through. ~ Jacqui

September 3, 2015 Posted by | Dave | Leave a comment

Last Night’s Rx: Music & Love

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Take a minute and let this picture sink in.

This was our Friday night. And it was pretty spectacular.

You’ve heard me mention Dave’s band, Pike 27, from time to time. They are incredible musicians. They are incredible people. They are part of our family.

And last night — the night of the very much anticipated show on Fountain Square as part of Cincinnati’s MidPoin Indie Summer series — they made sure that Dave didn’t miss out.

It was a last minute idea and probably the most hillbilly way to ‘live cam’ — but we did it! Thanks to iPhones, FaceTime, iCloud and Facebook, we patched in from the dining room table.

Dave had no clue that we were doing this. In fact, he was a bit annoyed when he heard me fussing at my computer and told him to, “get over here — you have to see this!” I think he thought I was watching cat videos or something.

I really wished I had a video camera rolling on him when he saw Amy on my computer screen, waving and smiling, and figured out that she was on Fountain Square. Live. Like there at the show.

The plan was really to watch one or two songs. We didn’t want to burden Amy (who was fighting bronchitis) to wear out her arm holding her phone up all night. But others jumped in and kept the feed going. Then there were the message pictures and the selfies and wow… so much love.

We are humbled by and grateful to all the folks that are Pike 27 and for the local music scene who continue to send love and support. It was incredible to see Dave so happy — so alive! And yes, he was singing his ‘girl part’ high harmonies and keeping time with his feet. Would you expect any less? ~Jacqui

August 29, 2015 Posted by | Dave | 4 Comments

4.3 = Done

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The collection process was grueling. Happy to say it is officially over. Another finish line crossed.

Dave just got the call with today’s total and final tally. He hit 4.3. It isn’t worth it to go through the entire process again tomorrow for another .7 or so. The Hoxworth folks and his med team are pleased with what they have. All stem cells are on ice.

No more shots this week! No more hook ups! Alarms have been reset for 5 a.m.  That, in itself, is a luxury. I’m actually in bed already posting from my phone. Sleep — oh beautiful sleep! We have missed you. ~Jacqui

August 27, 2015 Posted by | Dave | Leave a comment

Boy Needs Boost

oompa_loompaYesterday I mentioned that Dave started the stem cell generation process this past Saturday by receiving daily Neupogen injections. Today he had a blood test to see how effective the Neupogen has been in his system. While he is generating stem cells, he needs some help. Translation: his shots need booster shots. Hello, Mozibil.

In the grand scheme of things and of life, it isn’t a big thing, really. It’s just another series of shots, right? Sure. But when you’re already doing things, having to do one more thing when you don’t feel like doing anything at all is, well, yucky.

Regardless of how we were each feeling with this news for more, back up the road to Kenwood we went for the evening shot of Mozibil. As long as Dave is getting Neupogen in the morning, he’ll now need to receive Mozibil in the evening. The injections continue until all the stem cells are in the freezer. Again — big picture — not so bad. But it would have been nice to avoid this additional part.

Speaking of… tomorrow will be the first go at stem cell harvest. There will be pre-sunrise Neupogen, followed by a hook-up to a machine that was described to us as ‘draconian but effective.’ (nice) Similar to dialysis, this draconian device will cycle all of Dave’s blood and filter the stem cells into little collection bags. Once collected, the bags will be gathered and driven to Hoxworth where the stem cells will be counted. (1…2…3…17…32…) Dave will get a call in the afternoon letting him know the daily take.  A boost of Mozibil in the evening then a bit of sleep and most likely, a repeat of Wednesday on Thursday.

They say it can take two to three collection days to get the target number of stem cells required for the post chemo transplant. The goal for Dave is 5,000,000.

That’s a lot of zeroes representing a lot of things that eyes simply can’t see. Trying to comprehend is hard. All of this… it is part miracle, part riddle, and a lot of faith. I dare say my dreams tonight will be best understood by the music makers themselves.

~ Jacqui

August 25, 2015 Posted by | Dave | 2 Comments

Phase Two, Week One Underway


Early call time this morn. We started at 5:30 in Kenwood. No Craft Services.

Dave is getting his central line put in. This is the magical conduit through which stem cells will be extracted, the wicked BEAM chemo will be administered and said stem cells reintroduced into his system.

After this fun, he’ll go upstairs to receive his daily Neupogen shot. These started on Saturday. Neupogen is the super elixir that revs up the stem cells in the bone marrow, causing them to reproduce and venture out into the bloodstream. I guess you could say Dave’s system is being turned into quite the club scene.

Drink up you crazy stem cell kids and party like rock stars. The paddy wagon will pick you up on Wednesday… ~Jacqui

August 24, 2015 Posted by | Dave | 4 Comments

We’ll Burn You Down Like Warren Zevon

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Photo courtesy of Michael Kearns, fft media

Picking up from the last post, Dave endured a smattering of prerequisites for hospital admission at Jewish Hospital/Mercy Health and rounded out the week with a full PET scan. This scan, as any cancer patient or survivor will tell you, is always met with anxiety. It’s the magic window that lets you know what is working and what is lurking.

Contrary to past experience, the PET results came back in record time and to quote the report: “There has been dramatic interval improvement with complete resolution of the hyper metabolic activity in the multiple lymph nodes in the neck, chest and abdomen. There are no significant residual areas of activity.” 

That’s the fancy way of saying Cycles 1 & 2 of RICE chemo did more than everyone was hoping they would do. The docs needed to see a 50% reduction of the tumor sites, proving that “Roger” is chemo sensitive. Not only did they see sensitivity but they also saw signs of evaporation. *Poof*

It is a relief knowing that Dave is ahead of the game going into the next phase. Green lit, he is set to start the stem cell generation/harvesting process next Saturday. This will kick off his month-long gig at Jewish/Mercy and fingers crossed, should be the slugfest that knocks Roger out for good.

“Singing Hallelujah at 3 a.m. / Fueled by the third wind of the night / We’ll burn you down like Warren Zevon / We’ll burn ’til everything’s alright…”

Touché.

~Jacqui

And oh — if you are liking that little bit of Pike 27 goodness I snuck in here, make sure you are at Fountain Square on Friday, August 28 for the Midpoint Indie Summer Series. Chris Mueller of Alone at 3 a.m. is graciously sitting in for Dave, allowing DaveP, Sean and Mike to play this very much-anticipated show. It will be a fun night and most certainly packed with all sorts of awesome folk. Please go and support local music! Hang with the happy people! And, if you are there, Skype us in.  @stormydk1

August 13, 2015 Posted by | Dave | 5 Comments

Testing Week

I’ve been lazy. Several times last week I attempted to post but being lazy was a sweet indulgence. The kids went on vacation with Dave’s folks so we spent the week relaxing and indulging in some *choice* options on Netflix. I think one night we were asleep by 7:30pm. It was good medicine.

Things continue to progress. Cycle 2 of RICE went well. Dave had his typical side effects but nothing strange or difficult to handle. He’s a champ.

This week is all testing… and waiting.

Speaking of waiting… Waiting rooms in hospitals (and in particular this hospital) are not places I like to be. Between other people’s cell phone convos and the endless daytime TV that is always too loud, this truly is a test of patience. And patients.

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Now that Dave is back with the pros and doing his thing, I may wander and try to find some coffee and peace. Otherwise I will intercept the phone next to me and help explain to poor Gladys that George really doesn’t want to talk with her right now. ~Jacqui

August 10, 2015 Posted by | Dave | 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