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.
D minus one: This One’s For You, Roger
May this be the last chemo he ever, ever needs. ~Jacqui
D minus 3: You’ve Been Asking
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
Direct from Dave…
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
D minus 6: Check In, Kick Off
Today 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
Last Night’s Rx: Music & Love
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
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
Nashville or Bust 