Twisted Valentine
Keeping to our every third Monday schedule, today is chemo day. Yeah, I know. It’s really Valentine’s Day but once again, cancer has little consideration for those it invades. If Roger the Tumor was looking for love, then he is going to get a big dose of it in a few hours. The Doxorubicin (also known as Hydoxydaunorubicin the ‘H’ in our CHOP) is a delightful red color. Happy poison. With each drip today I think Roger will realize that what he calls love couldn’t be further from the truth.
As we’ve been reporting, we are really hoping that this will be Dave’s last dance in the Chemo Lounge. In around three weeks, he’ll go through some scans again so we can measure changes in Roger post treatments #4, 5 & 6 (today’s). If he’s shrunk enough, then it is bye-bye CHOP and off to new adventures with the radiology department. That’s as far as I can dream right now. We here in cancer land have our own version of one day at a time.
Ah, I’m sure you can tell that I’m in one peach of a mood. Fact is, I’m tired. Dave’s tired. This is really gotten old. But we’re not giving in. Despite being the most twisted Valentine’s ever, there still are things to celebrate. We wanted to make sure the staff at OHC knew how much we appreciate them doing what they can to make this whole thing go away. Because Hallmark didn’t have an appropriate card for us to give to our wicked angel nurses, cookies seemed to fit the bill. ~ Jacqui
Oatmeal Blueberry Goodness
Happy Trails
My co-worker gave me this sticker today.
I put it on my desk to remind me that some day — some day real soon — we are going to meet back up on the happier trail. Needless to say, the trail that we’re on right now isn’t the scenic route. It also isn’t our forever.
Last week it was hiccups. This week it is superficial blood clots in the right arm from the last round of chemo. (Note the word superficial … no need to panic.) Next week who knows? We’ve got hopefully one more round of the wicked stuff in front of us. Then, we can re-adjust for a different stretch of road that will most certainly take us to that happier, sunnier trail. Ah, Spring.
But when we do meet up again realize that we’ll be a little different from this experience. It’s inevitable. We’ve got some road dust on our boots and pebbles in our satchel. While we’ll gladly trade old path for new, a little bit of the previous stretch will always cling to us. How we let that history define us and guide us will be ours to determine. As the song goes, it’s the way you ride the trail that counts.
Keep smiling until then.
Just The Facts This Time
Behind this post of news and progress is another post that is tormenting me. Not sure why but at some point it will come out. Funny how words can be sometime. There’s been a lot rambling in my head these past three weeks. Blah.
HOWEVER, we did promise that this would be a place to get the updates and information on Dave’s progress. I don’t want my block to keep the good news back. Yes, we got some encouraging information yesterday.
As mentioned in the last post, Dave was scheduled for a CT a few days prior to Chemo #4 so that we could see if, in fact, the tumor had continuous response to the CHOP cocktail. Recall, we did see some shrinking and shirking post Chemo #1 but with the delay to Chemo #2 we were hoping the initial response wasn’t a fluke.
Dave went into yesterday apprehensive. Okay, that was a nice way of putting it. In reality, he had had enough and was d-o-n-e. He didn’t want to go to Chemo. After a great string of days, he didn’t want to feel lousy again. He also didn’t want to think he was going to get good news and have the reverse actually happen. I can’t blame him one bit. And, as much as I would have liked to have been the softie and let him consume faux-ality TV for one more day, it was time to get up, get out and face facts.
Sometimes being the heavy has its rewards.
What Dave learned during his oncology consult was what he needed to pump him back up and get him through Chemo #4. The CT scan from December 30 showed a much smaller tumor. In fact, it is now around 6.6cm x 6.7cm — 1/3 of its original size from the first CT at the end of August. It is safe to say that ‘Roger’ (note: tumor finally has a nickname) doesn’t like CHOP. But Roger started off as a pretty big guy; he is still going to need some assistance getting out of here.
Speaking of… Dave’s veins are starting to revolt. Previously used veins from earlier sessions are still beat-up and unable to be used. It took two taps to get through yesterday’s chemo. We are hoping and praying that after Chemo #6, the next reading will show we can say good-bye to the Chemo Lounge (although we love all of the wicked angel nurses there!) and move on to radiation. The veins need a break.
And Roger, if you’re reading this, it doesn’t mean we’re getting all soft on you. Beware, you booger, we have guns in the closet. *wink* It is safe to say what you thought was going to be your reality is clearly, faux.
Progress
Last week, some of you may have spied this tweet of mine. It was at the end of the day and I had been doing some related medical research for a work project. The opportunity to skate around the University of Nebraska website was there so I took it. I wanted to shake answers out of the sky … and my laptop.
As unhealthy as that exploit felt at the time, it seemed to work. Dr. Chan and his team literally were faxing the report to Dave’s doctor as I was boring holes into my screen. Yesterday when Dave went in for his check-up and treatment #3, he finally received a full pathology report. In black and white. With little paragraphs, circles and arrows to boot.
The good news is that it is not one of the ‘Terrible Ts’ or any sort of ‘Undifferentiated Neoplasm’ — things we had heard thrown around in the past. They have also ruled out plasmablastic and any T-Cell forms of Lymphoma — directions seemingly plausible from the quickie path study conducted in the OR. The words on the paper brought us back to our starting place of Diffuse Large B-Cell Lymphoma. And while that may seem ironic … especially after everything Dave had to go through to get there… there is a (see comment) comment attached. It’s always something…
Dave’s “challenging” case is “very difficult to classify” due to an “atypical morphology and immunnophenotype of tumor cells.” I’d argue that all of this is an atypical morphology, but then again, I’m the girl with the Google Med School degree, remember? Basically, their report says they’ve never seen anything like this. So, behind the base clinical category are the words “not otherwise specified.” Dandy. While this may seem unnerving, it is the consensus of a group of doctors who have pioneered many advances in Lymphoma treatment. A very large group of doctors. Dave’s slides were actually presented at a conference, thus the delay. We imagine PowerPoint was involved as well as some sort of buzz-in and vote mechanism. Had we known, we would have tagged his pictures ‘rights managed,’ negotiated a nice per use fee and sent popcorn. Not that Nebraska needs corn sent to them. That’s our Kentucky hospitality (and odd humor) kicking in.
Back to more good news … the CHOP chemotherapy that Dave has been receiving (and received yesterday) is the best course of action for this type of unclassified classification. The only rub is that one of his markers, CD20, is negative so that prevents him from receiving Rituxan as part of his therapy. I was somewhat hoping that this additional weapon could be added but it looks like he has to go old school. Dave was terrific in getting through treatment even when his veins didn’t want to cooperate in the beginning. (They were cold.) He’s become very good around needles and the nurses really are the sweetest. He’s an amazing guy and such a good sport.
Originally we were told six to eight rounds of chemo then we’d talk some radiation. We’re still on that track. Dave will get a CT scan right before his next treatment so his doctor can evaluate tumor response. We know the tumor didn’t like round one of the sinister cocktail and that was a VERY ENCOURAGING hurdle to overcome. We can’t wait to see how much more these additional rounds have beat it up. We are also going to conference with another physician in his oncology group to see if Dave will be a contender for additional forms of treatment. Given his no words can describe it situation, a little more exploration is warranted. His case has their attention. As it should.
All of this will take place in Cincinnati on either side of the New Year so we’ll be able to get through the holidays in comfort, ringing in cheer and hope. Spring and the finish line will be even closer at that point. *yay*
P.S. — I know many of you were waiting on this news yesterday. Sorry to shove you in the waiting room, as that place is a cave. Yesterday was a big day and perhaps it was the cold, but the events took more out of me than I expected. Sleep was good for my head (and this post) as I was able to channel some perspective. Thanks for the continued prayers, thoughts and hugs. The support is amazing and so very appreciated.~ Jacqui
Still Here
A number of folks have been checking in with us over the past 48 via various means of communication. Y’all are too sweet, did you know that?
Things are well (despite the Jack Frost cold) and the house has taken on a festive look with stockings, candles and other Christmas treasures we’ve collected. The kids are rounding out the semester and anxiously awaiting their two-week hibernation. (Me too!) The guys will get the tree this weekend. The girls will bake some cookies. Good times.
And while we’re all enjoying the December hub-bub, we’re also in a period of wait: waiting on the test results from Dave’s surgery, waiting on Brandon’s test results (he finally got in for his genetic blood draw), waiting on the college acceptance letter and yes, waiting for Santa to arrive.
It can be exasperating at moments but I haven’t stopped believing. ~Jacqui
Just Forget The World
Earlier this summer, my friend Joe and I decided to “celebrate” our 25-year old friendship by exchanging mix CDs. An 80s thing, yes, but fun all the same. I’m not sure how it really came about – this decision – but we wanted to share with each other the type of music we were listening to now as opposed to the stuff we “encountered” in 1985.
And me – in my quest to be creative and have this project mean something – opted to limit my mix to 25 songs that somehow, in an odd way, reflected the story of my life since age 17 … where I’ve gone, what I’ve done, what I’ve become and oddly enough, what I was about to face. (Creepy how those things work out.) Yes, a project with a back-story. It was tough to produce and I really wonder why I was so driven to do it.
Included in my mix was this song by Snow Patrol. I put it in to signify how I was feeling after becoming a mother — dealing with the “tug-o-war of life” that inevitably would get in the way of the relationship Dave and I had established. I never followed this band. In fact, I don’t know anything about them. But I’ve always loved this song.
The day after Dave got the first call that something wasn’t right in his body, I heard this song on the radio. After listening, I turned the radio off, and left it that way for quite some time. Music made me hurt too much. It represented too much: past, present and future.
Slowly, I went back to music and listening. And, upon doing so, heard this song three other times in random locations/settings. I’m not sure what it means. Maybe someone in radio land is in tune with how I am feeling. Or, perhaps now more than ever, I am.
It is a beautiful song.
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
Nashville or Bust 