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
A Great Night For Sport
The Highlands Varsity Mens Soccer Team won their ‘Sweet Sixteen’ game last night, advancing them to Sectionals tonight in the state championship tournament. Brandon’s cardiologist agreed last Friday to let Brandon finish out this soccer season. We know coach and the administration were nervous given our new understanding of Brandon’s health condition, but they allowed him to play. And play he did.
The starter goalie kept the opposing team from scoring during the first half. Brandon continued the shutout experience for the final half, when the opposing team’s offense decided to take more control. Highlands prevailed 4 to 0. I was busy tweeting the game so Dave could follow the action at home thus no pictures. I’ll borrow some from our friend, Larry, as he was rapid-firing from the field and post them soon. It was a great night to remember.
And speaking of great… how about them Giants? We got home in time to watch SF rock and roll the Rangers in Game One of the World Series. Without all the tremor action of 1989, of course.
Mutations, Misspellings, Momentum
I had a co-worker tell me today how amazed he was at my dealing with… everything. I have to be honest. Sentiments such as these are humbling and they make me pause. There’s no way anyone can really deal with … everything well. God only knows I’ve had (and continue to have) my moments. But I’m doing the only thing I know how to do and that’s to keep going. Negativity and anger really don’t help. They just spew more ick into the world. You have to keep on even when the days aren’t going well because that is the only way you’ll get enough momentum to get out. And that’s not something I’m regurgitating from a Hallmark card. I had to experience it again, the hard way.
On Tuesday of last week I was scared. After what seemed to be a normal Monday, Dave took a dip (as we were warned may happen) and spiked a fever due to infection. I realized how much the chemo could weaken his immune system and how quickly something he would normally deflect could bring him down. Fast. As the doctor wrote out prescriptions for antibiotics and a new course of pain management, I could tell by his tone that he was concerned and here’s why. The pathology reports were still inconclusive as to what type of Lymphoma Dave was fighting. So, while that would have been nice to know, we were still in a holding pattern — swatting at the general idea quasi blind while waiting for specific direction on how to counter-attack the mutant cells. It is a circumstance that makes you weary.
A few days later on Friday I hit a low, and this time it had little to do with Dave’s situation. Our eldest son, Brandon, was diagnosed with a dilated aorta that is most likely due to a connective tissue disorder. Watching him take the news from a room full of specialists in white coats was heart wrenching. In a matter of moments, what he identified as his life and his way was being completely re-arranged by the suspected misspelling of the FBN1 gene. The medical team knew of Dave’s recent diagnosis and that just made the entire moment feel pitiful. How in the world was all of this happening? So for all of you out there who think I’ve been doing really well with… everything, here’s the reality: I broke down. There were not enough tissues in that room and I was a complete sap.
But guess who was there for me when we got home… yep, you know it. It was Dave. He got me situated on the couch, brought me a mug of coffee, called all the grandparents with the news and took care of the kids after-school so I could take a nap. I’m sure that wore him out but it was a gift that I’ll hang onto through all this nonsense. No matter what, we take care of each other. And in doing that, we can take on the world.
A few days have passed and we have gotten over last week’s hurdles. Dave is feeling much better and is getting ready for another CT scan this Friday with chemo the following Monday. Brandon is amazing and realizes what a blessing early detection can be. Neither are giving up or giving in. They both are keeping on. When in Rome, right?
* * *
Oh, and speaking of Rome … some of you heard that we cut our hair and have been asking us to post a picture:
So why the change? Dave wanted to have a little bit of control should the chemo decide to temporarily make him reach for hats this fall. I realized that my hair would be better served helping someone else feel whole while going through treatment. So, with the help of my Dad for Dave and my friend Terry and Beautiful Lengths for me, we went short and sassy.
Little Victories (from Dave)
I had a bit of trouble falling asleep last night. I have been thinking, focusing, wondering, waiting and hoping as a way of life for the past week and I realized that it was at this time last week that I was getting ready for a bunch of tests and my first round of Chemo.
I must admit that much of last Monday was a complete blur and I am grateful for that. I was given a bunch of information, lots of handouts, pamphlets and info sheets. Lots of info that I will pick away at day by day but it is big picture learning. In a bit of contrast, the most important things I have learned this week have come from the most unusual places as well as right under my nose.
Those who really know me well know that I am pig-headed, stubborn to a fault and have a great deal of trouble giving up control of things and allowing others to help me. Hold on to your hats folks, but I have listened!! The love, well wishes, notes, positive energy (especially this), support and kindness that has poured over me and my family this week has been felt and is so real. Jacqui and I talk each evening about it in some way. We both feel it like a wave and it is unlike anything I have ever experienced in my life. It sounds a bit corny and such, but there is no way to really describe the feeling of being cradled in kindness and love. I have an army behind me and that has allowed me to “stop” and focus on kicking this nasty disease the hell out of my body.
This week, I have felt pretty shitty…yet at the same time, I feel really “up.” As bad as I might feel, I know I am on my way and things are happening. I know that things will get worse before they get better and I also know that in many ways, I can consider myself very lucky. Lucky to have found this the way I did and to find it early. Lucky to have the most amazing colleagues on campus that are there 100% for me every day, taking care of everything so that I can rest and fight. So lucky that my bones were found to be clean and that I remain at stage 1.
Two weeks ago, I was having a beer with a good friend and trying to figure out some of this puzzle and the question that just kept circling around in my head was “How in the hell did I get HERE?” What I took away was, I am “here.” I have cancer and that is a fact. That moment helped me begin a complete change in the way I see and react to things. I am not the same person anymore.
That is where the little victories come in and this is how I now approach every day. They are out there and you can see them, hear them and experience them if you choose but they are also really easy to ignore. Small wins and little acts of support and kindness make the biggest difference and I hope to never lose this new perspective. The world is moving too fast these days and we are forced to comply at times just to keep our heads above water… but… I will never spend another day walking this planet without taking a few minutes each night to be thankful that I am here and that I am loved and supported.
My wife and kids have been the most amazing. Yep, it is my body but Jacqui is going through every bit of this with me. She is by far the strongest person I know or have ever known. I don’t know if any of this makes sense…I am not sure reading it back that I even understand what I am saying but I am ok with that. I just know that this week will bring new challenges and I hope many more small victories. I hope everyone starts to look for them in their lives and sees the real power in them.
d
Good News.
When we went into Monday — with all of its crazy tests and chemo treatment — we had anticipated having results of some of those tests (primarily the bone marrow biopsy) back by Thursday. As Thursday ticked away with all of its anticipation, we came to the conclusion that we would not have any results. We’d hang in this mist of “yeah, it’s NHL but we don’t really know what type and how bad it is” for another week or so. It was maddening on many levels and as I was discussing Kris, Dave’s sister, it is the way it is. Patience. Patient. A dichotomy. We’d have to find a way to stifle all our mind-boggling questions until October 25 when we were face to face with the doctor again.
But weird things happen. As Kris and I were standing in the kitchen, railing on how not knowing can literally drive people insane, the phone rang. It was a telemarketer trying to sell magazines. (I was polite.) No sooner had I hung up, the phone rang again. Kris thought it was the crazy telemarketer calling back and she was itching to tell the telemarketer a thing or two. I was tempted to let the phone ring, but fatigue had the best of me and Dave was sleeping, so I answered. And I’m glad I did. It was Dave’s oncologist. The bone marrow biopsy was back and he had reviewed it after his last appointment. And then he said it: “Well, Dave is a little low on iron… but he has no lymphoma in his marrow.”
NO LYMPHOMA IN HIS MARROW!
The timing was all very bizarre. And it took a bit for Dave to process as he came out of his foggy sleep state. But it was good news. No, great news. I actually said “Yippee” out loud. There’s still more to find out and that will come in the next few days. But this was a huge weight off of everyone’s shoulders.
As for the patient himself, he is still quite fatigued from Monday’s chemo. He’s felt a little queasy and a little unstable but he’s learning to take it slow. He doesn’t like to take his evening dose of Prednisone (five bitter pills) but it is a temporary thing. He’s re-discovered Jell-O… it helps to get the stuff down and it makes him happy. As he said the other night, “It doesn’t matter how old you get, Jell-O is still fun to eat.”
So with this, we go into the weekend. We’ve wallowed enough. We are taking more control. It is not stage four. Thank God. Thank the Universe. Thank Life.
Nashville or Bust 