Boy Needs Boost
Yesterday 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
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
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
We’ll Burn You Down Like Warren Zevon
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
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.
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
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
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
Live in the Layers
Yesterday, 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.
Thank 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
Chemo Bouncer: “Sorry Dude. I Can’t Let You In.”
Who 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
Put The Pencil Down
Remember 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
Nashville or Bust 