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
The Past 24 — Good Guy takes the Lead
When ’24’ was in its prime, we were hooked. It was part of our weekly routine.
- Jack Bauer: I have killed two people since midnight, I haven’t slept in over 24 hours. So maybe… maybe you should be a little more afraid of me than you are right now. (“Day 1: 8:00am-9:00am“)
That’s how the show began. You gotta love it when the leading man takes control.
Dave is home after the in-hospital portion of Cycle One and things went extremely well. He’s a bit tired right now, but really, that’s about it. All the meds flowed in the way they should and all the nurses were charmed by his positive attitude and good patient ways. We were able to patch the kids in via Skype. I was able to get into work. Disruption was minimal. All good.
Cycle Two will start either the week of 7/20 or 7/27. It all depends on white cell counts. The plan is to keep things moving fast but moving smart.
Until then, we plan on taking things as they come and dealing with the present. I think all of us are feeling better now that the situation has turned from endless waiting to active treatment. Things will get bumpy (“Damnit, Chloe!”) but things will also get better. ~Jacqui
Starting Gate Selfies
So, 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.
BOOM! goes the dynamite…
Yesterday was another long day. The late afternoon meeting with the stem cell transplant team at Jewish Hospital in Kenwood started late. The waiting room was uncomfortable. Even though we had visited this place one time before, nothing seemed familiar. At one point, both of us wanted to run.
But running isn’t an option.
Once we were able to have “the talk” things took on a new level of clarity and real. There’s always that innocent hope that you may just hear, “Hey — this weirdness of yours is working in your favor today, Mr. Killen. We can fix it with a shot in the butt and some pixie dust.”
However, when three people are sitting/standing across from you, quietly and with compassion, walking you through timelines and procedures with things I won’t attempt to spell and pausing every two minutes to gently ask if you have questions, you realize that the only way out is through. And by through, I mean a multi-month stint of needles, poison, catheters, PIC lines, hospital stays, hospital trays, side effects, hits to the body, scans, recalibration, and hopeful periods that some things melt and some things regenerate… all within the petri dish of the human body. And not just any human body but that of someone you love. Sensory overload. I really don’t know how these doctors and nurses have these conversations.
They continued to talk. We continued to listen. The stem cell doc and Dave’s oncologist are part of the same group so there is a lot of synergy with the plan. It was confirmed that ICE+R or simply RICE chemo is the way to get things started. However, instead of three to four rounds up front, the transplant team is hoping that it only needs to be two before they can then take Dave over into their care.
To stay on track, the lymphoma sites need to show response to the chemo. If they don’t respond to RICE then they won’t respond to BEAM, the basis of the stem cell transplant process. If Dave shows a 50% reduction after cycle two of RICE then he speeds up the road to Jewish hospital for stem cell harvesting (which is a multi-day process all on its own), the scorched earth chemo process that is BEAM (another multi-day process) then the actual transplant followed by a few weeks of quarantine in the hospital to allow his newly re-introduced stem cells to regenerate and rebuild his immunity system.
If Dave doesn’t have the minimum 50% reduction after cycle two, then his local oncology team will hit Roger again with another cycle of RICE and continue to monitor with PET scans, etc., waiting for the signal to bring in the big guns.
Of course, this is based on Dave’s marrow being free of cancer so he can be his own donor. (Biopsy next week, most likely.) If not, then there is a whole other process involved on the transplant side. We won’t go there right now.
I had hoped there would be an option that could knock the lymphoma back with just chemo, avoiding the transplant. Maybe the whole diagnostic web of virus in the background and simplistic thought of “they caught this early so it is little cancer” would negate such drama and Dave could just treat what was present with what was needed. But that is not the case. We learned that when you are a repeat, it doesn’t matter if there is a spec of lymphoma or a big tumor of it, the intensity of treatment is the same. There is no simplifying. To quote from yesterday, “you absolutely need this.”
Again, there is no pain. No symptoms. Nothing to indicate that Dave has any of this going on inside of him. It was a fluke movement that made him notice the lump.
Maybe that is why this feels so hard right now. I can’t see what they are saying is there. I can sense it but I can’t see it. I waffle between layers of acceptance and soft denial. And I know I need to get over that real fast but I digress and admit: there is comfort in denial.
After another bit of talking, they paused to ask if we had questions. Dave simply said, “when do we start?” There was no hesitation — “Monday if we can.”
Given the holiday today and the late hour of our consultation yesterday, we are thinking that Tuesday is a more reasonable start date. But who knows? The phone hasn’t rung yet.
“You absolutely need this” … but you still have nothing concrete…help me find a way.
~Jacqui
Nashville or Bust 