Thru Chemo Gate #2
It’s been a long stretch of seven days and I’ve been avoiding the computer. A number of times I’ve floated towards the keyboard with intention to update on Dave’s progress. And every time I’ve found myself just as easily floating away — finding other things to take my mind off of stuff. But, as this long holiday weekend comes to an end and I’m busy getting the kids ready for ‘re-entry’ to normal schedules, I realize I have a few things to say.
Let’s start with the obvious: Cancer sucks.Bad.
Okay, so that was mature (not) but you get the picture.
Dave had his second chemo treatment this past Monday and as of Friday evening (day after Thanksgiving) it was finally ‘complete.’ As part of Dave’s treatment, (CHOP) he has to take one of the medications orally for five days. Yep, it’s not enough that he has to sit in the chemo lounge for several hours while an eerie cocktail of things I can’t pronounce very well, drips into his veins. He then gets to take five bitter pills after dinner for five consecutive days. Party on. Thank goodness for Jell-O cups. They’ve become the wiggly-jiggly chaser with smile benefits.
As we continue to figure this chemo thing out, we’re learning there is very little down time in which Dave’s body is “normal” and his mind “free.” And now that we’re back on track with a treatment schedule, this reality of how we will be living is admittedly wearisome. There are okay feeling days and flu-like, crappy feeling days during the first week. Going into week two (where we are right now) the immune system tanks and Dave is susceptible to any small germ. Currently, he has that awful golf ball feeling in his throat and ears so I’m sure tomorrow will bring with it antibiotics and more pill joy. Week three has some shining moments and days where we can almost forget about the disease. We really take advantage of those because we know that when the week is over, it is back to the lounge for more cocktail fun. Woo-hoo.
As far as chemo goes, there are four-to-six more rounds ahead. Dave’s doctor has discussed folding in radiation at some point once chemo reduces the tumor to a certain size. Then again, we’re still waiting on the full, post-surgery pathology report which may/may not alter the treatment plan. Dave’s been dealt some crummy cards but he still manages to outsmart the game.
And speaking of cards, here’s one Dave received this week (on a super crappy feeling day) that pumped him back up. I can only believe it was created by someone who has gone through all these gates as it has a certain voice of experience about it:
Front of Card
Inside left panel
Insight right of card with handy, dandy removable prop.
A Post from Dave — Recalling the Past Two Weeks
Back in the Game
So…have you ever had something to do, a challenge task that you readied yourself for. You are in the “shoot,” 100% percent ready to go and then (cue the crickets) STOP!!! Do not pass GO, do not collect $200, just wait. This must be how those folks in the Space Shuttle feel when they are attempting a launch. Now normally, I have the capacity to pause and understand the reason for the delay. Notice that I did sneak in the word “normally.” But that said, the last two weeks have been one of the most challenging and un-enjoyable rollercoaster rides (mentally) that I have ever been on. Even as I write this and see the words “two weeks” I shake my head a bit.
The quick summary:
11/1
Learn that my diagnosis is still unclear, cancel round 2 of Chemo, plan for a 2nd Biopsy (chest surgery), meet with surgical team, navigate through all pre-surgery testing, schedule surgery, cancel surgery, reschedule surgery…
***breath***
11/12
Up bright and early (4:30am) for surgery, out of surgery and into recovery, up for PT the next morning, recovery went well and I was out of the hospital and on my way home in just 4 days, have a few home care visits from the surgery team and finally get set to meet with oncologist to review the information from the biopsy.
Now, this is just a snapshot of my schedule and needs. Add to this all of Jacqui’s needs and responsibilities along with the kids schedules. Factor in my driving restrictions and on-going fatigue. Toss in a bunch of new “Lifting” restrictions for the next 3 weeks and I really “Hit the Wall.”
Some advice I got early on from friends who have battled cancer or other major medical issues is “don’t become the disease.” I said early on that I would not let cancer define me, however, I see that I am very close to doing just that. Lately, it enters into every conversation and factors into every thing I do. The news about the biopsy came at just the right time. It put me back in the game.
It also got me up off my ass a bit more. It was great to hang out on Friday with a colleague from campus putting together student entries for the Cincinnati Advertising Club ADDY Awards. I got back to my editing duties on a number of independent projects, picked up where I left off nearly two months ago with the Cincinnati State transition to semesters, and started some early brainstorming & thinking for the 6th Annual College Movie Festival.
The Learning Continues
As I emerge from this fog, hopefully a bit less self-absorbed, my friends, family, colleagues…this Army of supporters are patiently standing by. Wise beyond your collective years, you understand. You allow me to rant, theorize, speculate, scream and pout without question or condition. For this I say, thanks. This is my well, the place I draw much of my strength.
More than ever, I gain strength from my kids and from Jacqui. Every day Tessa asks “is this a feel good day, or a feel bad day?” James and Brandon help with all the “heavy lifting” and never really complain about it. The hugs are the best and Tessa is so sweet to always ask if my back is sore so “the hugs won’t hurt.” Now Jacqui, I have no idea how she does it?!? She has been by my side on this every step. I know that all of this is frustrating, maddening and downright scary for her as well but she finds a way to sift through all of the crap (insurance and medical billing info along the huge and ever changing prescription list) to lift me up every day. Again, it is the small things like bringing me a hot cup of coffee before I even get out of bed, or a random kiss on my bald head that mean the most.
Just Keep Turning Left…….really?
A quiet and beautiful Sunday morning brings pancakes and a second small cup of coffee.
Jacqui and I had an afternoon date planned. We really enjoy and need these brief bits of time together and this past Sunday presented itself as the perfect opportunity to share a few hours before we jump back into the Chemo treatments.
Destination 1: The Victory of Light Psychic Festival.
We enjoyed strolling around, looking, observing and learning a thing or two. Our long conversations with Gene Jackson, “The Crystal Guy” and Alisha Wisler, Shaman and Spiritual Healer, two beautiful and caring people, gave us some comfort, great advice and ideas for my remaining chemo treatments but also some things to help Jacqui navigate through this maze as well. We continued our stroll and made sure to check out all the booths in a quest to find big batch of sage for Jacqui.
Destination 2: Sam’s Club.
Yeah, this is what we do on a “date afternoon”.
Really, it is what we do and it could be Sam’s Club, The Psychic Festival or just a quiet spot to sit and sip coffee, as long as we share it. I pushed the cart and J loaded it up. I did find it very sweet that towards the end of the trip with the cart piled up, she would no longer let me push since it was against the “heavy lifting rules” after last weeks surgery.
Destination 3: Home to unload and relax.
I still get tired more easily so I found a comfy spot and turned on the TV. Since the Bengals were leading by 17 points in the first half, and the game was blacked out anyway, I settled in for some NASCAR. Yep, you heard that right and I will admit it to all, I like NASCAR. Round and round they went and just as I began counting laps in an effort to doze off a bit I look up over my shoulder to find a big ol’ bunch of friends in my living room. We later named it “Flash Mob Poker” and it was terrific fun and a great way to get my mind off the Chemo restart.
I, like NASCAR, found myself in a “left turn only” mode. Follow the prescribed path, listen to the docs and get my treatments done. The surprise visit was the right turn in the middle of all of this left turn only routine I needed. I may have lost 10 bucks but I got much more. Those of you who know me well know that I DON’T like surprises, not even on my birthday, BUT this was a big exception. I enjoyed every minute and thank the poker mob for finding time on a busy weekend to crash my house.
I keep going back to the “little things” over and over again in my mind and in this blog. I will look for them everyday, and when they are given to me I will hold them dear, like the gifts they that are. They give me the energy to get back in the game and fight hard.
Thanks everyone!
d
Home!
Dave’s extended weekend jaunt is over and he’s back home. Everyone is happy, including the cats. I just asked him what the best part of being home is and he said, “The quiet … and the hugs.” Well put.
We have a few follow-up appointments this week. It sounds like the oncologist is eager to get Dave back onto his treatment plan. Of course, what everyone wants is an answer. Pray that these slides bear what we need to know.
Until then … we have five plates set around the dinner table and a standing 7:30 family date with Jeopardy.
We’ll take ‘Good Fortune’ for $1,000, 000, Alex.
Holding Patterns
Friday morning dawned very early for the entire Killen family. Dave had to be at the hospital by 5:40 for his re-scheduled surgery. That meant that the Grandparents were on deck to bridge the gap and help the kids get up and ready for school. Again, we are so blessed to have the support circle we have on this journey. Things seemed to go off without a hitch.
Dave checked in at Christ Hospital and from the first moment was treated with great care. Things in pre-op were going swimmingly. That is until the lights flickered.
At first we didn’t think too much about it but then we started to hear the people in the hall talk about ‘back up generators’ and ‘hold ups.’ Dave had his IV started (was literally seconds away from receiving his initial sedative) when all this happened. All I could think was “Oh Nooooooooo! Not again!”
Apparently, there had been an auto accident on Vine street which took out a utility pole that inadvertently took out a power grid that supported not only Christ Hospital but also University and Childrens Hospitals. Because the hospital flipped to its back-up power source it did not want to start any new procedures. It also wanted to preserve all of its juice for the E.R. Understandable but…
Dave didn’t take his full strength pain med at home thinking he would be enjoying the goodies of an open hospital bar at sunrise…
…and I didn’t have any coffee because a.) it’s green dress cruel to make coffee when one of you has to fast and b.) I thought I could grab some once he was wheeled back at sunrise. No biggie.
So we waited. And waited. Dozed and waited. Watching the nurses deal with the holding patterns and listening to inter-hospital communications was fascinating to me. You realize how many systems regulate this big crazy blue marble we’re on and how random connection points link us all. Friday morning was our own odd version of the butterfly effect.
Of course, there’s always this ‘uh-oh’ feeling when you know your “project” is being compromised by a delay. What sort of rush tactics will go into effect to make up for lost time? Trust me, those aren’t good things to think about when you’re looking at your husband in a hospital bed. So we went back to daydreaming about our favorite places — using mind over matter to get through the wait.
It took Duke Energy two hours to get the hospital back on-line. Our lead nurse told us in her 30-years there she had never experienced anything like this. I double checked the date to make sure it was Friday the 12th. I didn’t want anymore “gee, this is weird” situations. We really needed to get this surgery under our belt so that we could *hopefully* get out of our own holding pattern of diagnosis.
Things began to flow pretty quickly after that, including anesthesia. Dave’s surgery took two hours during which I went to the cafeteria to finally get some coffee. Did you know it is possible to go to a hospital cafeteria and find not one but two multi-jazillion gallon coffee pots bone dry? I had to laugh. I mean, what else could I do? Except wait, along with the in-laws, for the machine to brew us up some joe. It was the best worst cup of coffee I’ve had in a while.
Despite the drama, surgery went well. The team was able to secure a sizable amount of tissue and because of how the tumor was situated, they didn’t need to manipulate the right lung as much as originally anticipated. As typical in these situations, a slice of the sample was frozen and observed by the staff pathologist in the O.R. while the rest of the sample was prepped and sent off for the full-fledged analysis/report. The docs weren’t able to tell us much about their initial read except for this … they couldn’t tell exactly what it was granting possibility that it may not even be one of the 67 flavors of lymphoma. I know, insane. We’re hoping that the report will be back within the week. And we’re keeping those hopes high that this could be something even better than what we first thought we had. Game show psychology at work — the second showcase is always better than the first.
As for Dave, he’s in a very comfortable room, doing well with his pain management. He has a drainage tube coming out of his chest and other lovely things but that’s all temporary. His nurses yesterday were incredible, securing him a personal stash of orange (his favorite) Jell-O. He’s in great care and we anticipate him coming home Sunday/Monday. We may need some extra hands in the next few days and I’ll be sure to let you know. Everyone has been so incredible and generous in their offers of help. Trust me, we’ll tap when we need. For now, just keep the patient in mind. He’s going to be sore from this one for a bit. ~Jacqui
Transitions
I’ve been writing about myself — and my family — a lot lately. And while that makes sense, my life — our life — is bigger than five. And I need to acknowledge that.
So tonight I am doing something different. I am turning this time and space over to others. Like us, your life has been flipped upside down and your center has shifted.
Work struggles, aging parents, broken hearts, broken trust, separations, deployment, chronic illnesses, loss of jobs, loss of place, new surroundings, scary diagnoses, harassment, and forever good-byes. For all the small gifts we have received this year, 2010 has also brought major transition and uncertainty for many of you that we know and love.
We’re thinking of you.
‘Tis better to be the ‘bumpable’ guy
Dave just received a call from his surgeon. Another patient needs Dave’s slot in the OR tomorrow and so Dave has been bumped to this Friday.
That said, we’re going to wait for the guitar to come back round and try this again in a few days…
Pre-Surgery Update
It’s been yet another hectic week and weekend in our neck of the woods. We now have two bona fide teenagers in our stable. Jameson hit the big 13 last Wednesday and we made sure to take a pause on all medical stuff to celebrate and eat lots of cake. Mmmm…. cake.
Jameson also rolled his highest bowling game ever during team practice — a 176. He’ll be rolling with the high school team next week during their first competition of the season. Woot!
Dave has been feeling really good and enjoying the past few days, even doing some production work this weekend. Mentally that is a great thing as we anticipate the next few weeks to be physically tough.
The surgical biopsy is scheduled for this Tuesday (11.09.10) and Dave will need to stay in the hospital for a few days post. During our consult with the thoracic surgeon, we learned there is no possibility of actually removing any/all of the tumor due to its position up and near the aorta. His mission is to go in through Dave’s right side between the ribs, reach beyond the right lung and extract out a decent chunk of tissue for pathology to examine. (Think 1 cubic centimeter) Unlike the sample from the needle biopsy, this larger chunk will give everyone the picture and data needed so that this thing can be TYPED and treatment can be best aligned with ailment. It seems like a lot to go through for something the size of a sugar cube but it is something, unfortunately, that needs to be done. Dave is ready. He has a plethora of new head wraps (yes the hair is gone) and a new, favorite zip front hoodie. (I personally like the biker-meets-skater look.) He’s been working hard to keep the weight up (he’s craving pizza and yellow cupcakes sans frosting of all things) and as always, has a strong, positive outlook. He greets each day with a smile and makes sure that we all know how much we mean to him. I think this has really helped the kids to stay confident and calm throughout all of this. Honestly, they have been amazing!
Chemo should start-up again soon after surgery. I’m not quite sure how all of that will work and I’ve learned not to be too concerned about future happenings. All sites are on an easy and successful surgery this week with solid and speedy recovery. Just like Jameson sizes up the pins before knocking them all down in a crash, so too are we going to size up this bad boy tumor before blasting it again. And yes, we will blast it good. ~ Jacqui
Tibetan Wisdom & Barbara Streisand
I recently received a care package from a high school friend, A.J., a multi-talented, artistic and sage ex-pat living in Australia with his wife and two adorable children. Thanks to Facebook and Twitter, we reconnected a few years ago. And that’s a good thing. I didn’t have many friends in high school but A.J. was one of those few who made that time tolerable. We weren’t mainstream kids. And while it seemed nobody understood us, we understood each other. Funny how that works.
But back to this package… When A.J. caught up with recent news he reached out over the wire and checked in via IM. In our brief, modern-day telegraph conversation (stop) he shared with me some thinking that helped him grow and shape his current day person. And then he put it in a box and sent it my way.
I was expecting the book, The Tibetan Book of Living and Dying by Sogyal Rinpoche as we were chatting about impermanence and such. The movie, like A.J.’s incredible wit and humor, caught me off guard. And while it may seem random on many levels, I so totally get it. *squee*
If this were high school all over, I’d flip out our administration by writing a paper on Tibetan Wisdom & Barbara Streisand. That would be fun. And I’m sure if I needed Italian translation or any form of illustrations, A.J. would help me out there as well. ~ Jacqui
Quick Update
Our plan for this week was to meet with the oncologist on Monday, review the 10/29 CT scan results and go through the second round of Chemo. Operative word in last sentence: *plan*.
We did go to the doctor and are happy to report the first round of Chemo had some effect on the tumor. It is a bit smaller than our baseline measurement. I think it got the message that none of us want it around. Move on, tumor.
And while the CHOP Chemo had this effect, Dave’s oncologist made the call to wait on administering Chemo #2 because of the *unknown* element. Multiple pathology teams have reviewed the slides and they still can’t conclusively type what Dave has from the original biopsy. They want more tissue.
When Dave went in for the needle biopsy in early October, we knew there was a slight chance of this happening. The tumor is in an awkward place. We had really hoped that when we heard they got good tissue via the needle, we’d be able to get things typed and understood quickly. Ah — we were such newbies back then and didn’t realize THIS STUFF is on ITS OWN SCHEDULE. In order to make sure they are administering the most effective treatment possible, the docs (and we!) really want to know what sort of mutant cells have come out to play. Logical, yes. Maddening, of course.
So today, we meet with a thoracic surgeon referred to us by the oncologist. We’ll talk about a different approach for going in and getting a piece of this critter. This is not a step we want to take but it seems to be the one in front of us. We’re hoping for some options.
I’ve been struggling with this whole twist of events. I really had thought we were over the first big hurdles and could get some traction with a schedule and treatments. It’s hard to live when you feel life has been hijacked. I can only liken myself to a pouting child who doesn’t want to play this game anymore — she wants to play the other game she was playing a few months ago. And while I know that my life hasn’t been ‘hijacked’ — my life is still here in front of me begging to be lived — I can’t quite see it right now. I’m hoping for a few answers today that will help me move off this space because it is not a space I enjoy.
To help, I’m taking myself back to this summer and trying to get in touch with suspended magic. Ironic, it was hours after this picture was snapped that Dave first felt some back pain. I’m ignoring that factoid. Instead, I’m channeling the unadulterated memory — a morning of pure bliss and happy. No one really knew where we were … or where we were going. I remember thinking how great simple life and nature were. How good the sun felt on my face. And how lucky and blessed I was. ~Jacqui
Woods Creek Lake, Kentucky
Nashville or Bust 