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
Roger: A #TBT We’d Rather Avoid
It’s been a tumultuous seven weeks. On May 11, Dave went to the dentist to get a crown. His teeth took a toll during chemo back in 2011. It happens.
Post procedure, he noticed a lump on the side of his neck. It took a CT, PET scan, surgical biopsy, and several consults with his local med team and the Mayo Clinic to get the final diagnosis today: his R rating has officially changed from remission to recurrence.
Everyone agrees that it is somewhat odd for his Lymphoma (known in these parts as ‘Roger’) to come back this late in the game. Seriously. Dave was just a few months away from ringing the five-year “I’m Good” bell. He was all like running 10ks and having ridiculous fun with Pike 27. It was hard to keep up with him.
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Flying Pig 10k, May 2015
Additionally, there were no symptoms. No pain. No fatigue. No night sweats. No weight loss. No fever. None of the above. And trust me, Dave was interrogated every which way about all of these things. Like a kid, he just shook his head, “No.. nope.. nuh-uh…” countering every quizzical glance with recall of what he has been feeling… great, strong, joyous.
Pike 27 opening for the Fauntleroys, Taft Theatre, October 2014
So here we are. We’ve wondered what this all means. We’ve cried. We’ve railed. We’ve hit things. We’ve sat in silence just waiting for answers… signs… a phone call that this was a mistake. But it isn’t. It’s our real. Summer of 2015 has gotten pretty real in a way we didn’t see coming.
We’ll get through this. It’s going to take some work and some grit but it can be done. He can do it. So many of you have reached out with your love and wonderful support. Seriously. It’s been showered on Dave and all of us like a storm. We’ve received it with arms open wide. We are lucky people.
Speaking of luck… during diagnosis today (which was made complicated by a background viral infection and a note that once again, Dave’s case is “odd”) we did get some good news. Unlike 2010-11, Dave’s Lymphoma is now CD20 positive. This means that once treatment starts, the docs will most likely add Rituximab into the mix. In the world of chemo drugs, it’s the kick ass boot you want on your side — able to thwart the nasty in ways it didn’t see coming.
Next week, there will be one more round of consultation with the stem cell transplant team to align to final plan. We anticipate chemo (“salvage chemo” as it was called) will begin early July followed by the autologous transplant. I know, a lot to take in. And, similar to a summer movie sequel, it has to have more drama, more action and more tension. Maybe it helps that we’ve been in these waters before and know to 1.) keep your head up and 2.) always pack a chain saw. Roger, you really, really don’t know who you called out. Get ready. ~Jacqui
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!
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 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.
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
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
From Dave: Time in a Vacumm
Inspired by a great weekend, here goes…
I have not written over the past year or so out of both fear and selfishness. So many things have happened (good and bad) but the outcome is something I would never ever change. I have lived and learned more than I ever thought possible after going through treatment.
This summer was by far the best time I have ever had — which is a grand statement.
Natural Bridge, Red River Gorge, Kentucky July 2012
After breaking free from all meds, I hiked to the top of Natural Bridge with James (twice), spent a great week playing in the ocean with family, ran the Hudy 7K with J and “re-invested” in a drum kit so I could play once again with great friends this weekend. I am blessed for sure.
I spent this Thanksgiving weekend with family and friends. During meals, family fun, and other outings everyone asked how I and the family were doing. Not just a “hey, how’s it going?” thing but instead a true request for info. It really hit me when my good friend Jim asked, “So, I read all the posts from the past, but really, how are you?” What a beautiful thought this was. You see, Jim and his love, Lora, had great news of a baby on the way. But his mind was on me and my stuff.
Friends.
You know the kind of people you can be away from for years at a time but once together they seem to “stop time” in a way this is extremely rare. Well this weekend was just that. This came at a moment when no one but myself and maybe Jacqui (because she can read me like a good book) could realize and I am so grateful.
Tuesday the 27th is my next round of scans. Over two years removed from the original diagnosis but somehow, the fears and stress do not diminish. I so wish they would, but I can’t free my brain from the “what if” thoughts. That said, I know that whatever my scans on Tuesday bring, I am in beautiful company.
I feel great (which is so beautiful to say), and I still say this with caution, but it is true.
I hope this round of scans is clear. I also send positive thoughts each night to everyone in my big circle, who are supporting or fighting a battle of their own…
More to come from this strange and rambling post soon…
Peace and love to all and may the holiday and the new year bring us comfort.
d
Nashville or Bust 