Dear AFC (and all who participated in the Rockburn pink-in):
I know this message has been some time in coming, please forgive the delay. I'm writing this from the hospital as I enter Cycle 2 (of four). My life has taken on a timeline of its own, and that timeline rarely synchronizes with most people's "real life." I'm blessed to be living very much in the moment. It's not a bad place to be...
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Thank you all for what you did at Rockburn to support my in my cancer battle. It is very difficult to communicate what it means to me. It was such a simple thing—a strip of pink tape—yet it held a sincere and complex meaning.
Through my first week of recovery, I had two focuses. The first, to see my Little Angels. They inspire me. In my darkest moments, envisioning them gave me strength.
The second focus was Rockburn.
Why?
The thing. Us. You.
There's something enriching about our races—especially Rockburn. We share an esprit de corps
that's infectious. Part of it is the cyclocross culture. Part of it is
the joy we all get from competition. Part of it is pure endorphin buzz.
All of these components make a heady cocktail of positivity.
But there's something more.
I
don't know any of you well. You don't know me. I've spent time with
some of you—particularly those who trekked to Louisville—but our
relationships are young, new, uncertain.
Yet, every time I
encounter an AFCer or a CXHairer, or the hairy Jon Seibold, some spark
of magic happens. This crazy motley crew constantly reminds me of the
best in people. It's a warmth, a genuine friendliness, a consistent
rapport that exists without pretense or attitude or any of the social
barriers we normally encounter.
I cannot explain it, and I don't
want to examine it any more closely. I want to embrace it and enjoy it
and acknowledge it and celebrate it.
And to do so is to celebrate you.
No one had to do anything, yet you did something. It was symbolic, yes, but it was very real. Yes, I love pink! And seeing so many of you adorned in pink warmed my heart and raised my spirits.
That's a lot of love in one place...and it was for me.
Humbled, I remain...
I'm not going to pretend, and this isn't "woe is me", but you should know that it took every ounce of strength I possessed to be there. When I first arrived I labored up the hill and saw Seibold on his practice lap near the nasty off-cambers by the old start grid. He stopped and hugged me and said something amazing. And that gave me a boost...enough to keep walking up to race central.
By the time I got to the gravel hill I was was leaning on my cane in desperation—having just walked more at one time than I had in two weeks. I ran into David Tambeaux and Jelly—and we hugged and they said some amazing things, and I derived the strength to walk up the hill to see the AFC tent and CXHairs Bill—whose kind words and gentle spirit move me still.
And along the way people came up to me and hugged me and said amazing things.
Do you see the pattern?
I was exhausted, and every time I reached my limit, I was buoyed up by you.
Every hug, every kind word enabled me to take another step forward. Each encounter helped to endure and enjoy. I got to watch a few races. I got to hear cowbells. I got to shout encouragement, talk a little trash, joke about handups, marvel at your skills, and relish the experience of a sport and an atmosphere we all love.
And I do love it.
And without you, I would not have been there.
And without you, I could not have endured it.
But you got me through.
And I cannot thank you enough.
So many people said so many wonderful things. They blend together, and that's OK, as I was delirious through much of the experience.
But here is what I took away from the day.
You are a special group. You're competitors—some of you are fierce competitors—yet you have big hearts. And you extended your love to me.
That's a beautiful thing.
And I honor you for it.
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I'm starting my second cycle. I just refueled at the 20-mile rest stop. This ride? It's going to get harder. There are a lot of miles ahead, and the hills are going to get steeper and longer.
No amount of training could prepare my body for this. I will bonk, and bonk, and bonk again. Yet, I will endure. You see, every sufferfest I've endured has prepared my mind for this. Each training ride and race has toughened me. And every time I read about your races and struggles and triumphs and failures has filled me with a reservoir of lessons from which I draw strength.
Pat Blair said something to me along the lines of "Man, what you're going through is like Patapsco 100, but worse!"
I suppose it is.
But I can endure. With your help. You smooth the trail. You host rest stops and shout encouragement and ring cowbells and distribute handups.
Constant Reader, this post is produced immediately on the heels of the previous post. I did not want to lose what little inertia I have.
The end of this post is unedited. I wrote about the sensation of chemotherapy in real-time. At least as I experienced it tonight.
Cycle 1. Day 3 Word of the day: Buzzed!
Facebook Post Awake and ate an apple to start day. Few symptoms so far. Never had more than an hour of sleep last night, due to all the infusions and checks they needed to do. I'll catch up on sleep after shift change shenanigans. So far, so good. We're in front of the nausea with the meds. Here's planning for another good day!
So I got up and made my bed and made my toilet and performed my morning routine. I redecorated my room, moving the dresser from there to here and re-stacking my books. Constructive stuff.
The hours surrounding the shift change are like Manhattan rush hour. People move in all directions, conversatations bounce off one another like crazy balls in a refrigerator, and so much gets done that its amazing there is anything left to do for the remainder of the day.
I was much-visited—it being the moring after my first "real" chemo.
And to the delight of one and all, everything was good! I had no symptoms of anything, other than exhaustion.
Huzzah!
I was a little stooopid, but not delierously so. It was a good morning!
Once things settled, I focused on a nap. Two hours. That's all I wanted. Two hours of sweet sleep.
So, I did something I had not done before...I closed my room door and pulled the curtain.
And I slept.
I got up after two hours (had to pee, had to check on my pee, must evacuate my pee, my pee...was brown...shit!).
I made the bed again and resolved to drink like a fool.
As I sipped, I snarfed.
Facebook Post from a Friend When I think of Ray Whitney I often think of Calvin - from Calvin & Hobbs. I am not sure if its the hair (Floppy!) or his sense of adventure. However, this morning this is how I am thinking of Ray - standing strong, showing the world he is ready to take it on! He's got this!
I responded thusly.
Facebook Post Ladies, try not to swoon!
I was up and buzzing. I felt good (though stooopid), and my body was sending me weird, aggressive, caffeinated signals—without the benefit of my having consumed any caffeine.
I put on some music and shared my vibe with the world.
Facebook Post I'm awake. Here's the song I'm waking up to this fine day! Yep, I just need a disco ball to accompany it and liven up the oncology ward!
I got a call from Mom. She would be visiting pretty soon. Cool! Company! And I'm feeling GREAT!
I spoke to Nurse Ashley, hoping that the doctors would let me walk around the hospital. I knew my blood counts had not yet been affected by the meds, I felt strong, and I was vibrating with energy. No sleep and steroids seem to like one another.
She left. She returned. I had a hall pass!
Out of the Blue
Some day I'll have the energy to revisit this section and flesh out the how and why this affected me.
In its simplest terms, I received an email from a professional cyclist I have long admired.
It was a short note.
Hey Ray,
Here's to a strong and full recovery! Hope to buoy your spirits and that you're going to be ready for the Krempels King of the Road Challenge 2014.
All the best,
Ted King
I know that means nothing to most of you. I know it seems small.
But this isn't about you.
It meant a lot to me. First, the same friend who sent the Calvin and Hobbes image contacted Ted. He knows him. Second, Ted took the time to send a message to someone he had never met.
And embedded in his response was a goal, a concrete milestone.
Here's to a full 22 laps and to July 2014! Yup, one step at a time, one pedal stroke at a time.
All my best Ray,
Ted
His July is the Tour. Mine is to be well and go to Squirrel Island in Maine. It's many days and many miles away, yet July has become a milestone.
Many thanks, Peter.
Many thanks, Ted.
Freedom!
Mom arrived. An adventure would begin!
Mom knows this hospital. She had more than a few procedures here, including chemotherapy for lymphoma. She got to play tour guide and show me some of the sights.
Mom shuffled her shuffle steps. I padded about in my yoga pants, a t-shirt, and a wool vest (looking for all the world like I just crawled out after a hard night in a laundry bin). We walked the hospital.
Oh, the sights we did see! A gift store (Don't blink, you'll miss the door!). The coffee shop (your Dad would be there at 0559 every morning with his nose pressed to the door!). The secret staircase that led (This garbage wasn't here last time!).
It was fun.
And I was woozy.
Stooopid I felt, but I still had the buzz.We got to our destination—a food emporium called "Epicurian"—and I began to select my lunch. After serious, mind-numbing, soul-torturing consideration, I worked around the salad bar and found myself choosing odd combinations of things. To any normal person, it would have looked normal. But I have deep-rooted, well-developed habits in the salad arena. This was not that.
I had something of everything green. I went for vinegary things. I went for garlicky things. I got a pile of cous cous...just because. Mom suggested a soup. I looked. I opened the chicken noodle soup and had two, simultaneous reactions. One was that it was a hugely-chickened soup with many lovely noodles. Heartiness defined. The other was that the noodles looked like death incarnate. I was repulsed.
I don't know where any of that came from, but I remembered that I wanted to record it here.
I looked at the other soups, and was dazzled by the brilliant crimson of the tomato basil.
So I got a bowl.
And we went to our table.
And I ate.
And I proceeded to eat thusly.
I would take a spoon or forkfull of whatever part of the salad I was working on, and I put it in my soup. I stirred it about. And I ate it.
And it was good.
And it was bizarre.
And I ate it all that way.
And I was happy.
We walked back to the hospital, and while Mom attended to a Mom thing, I checked my messages. There was an email from a friend. She had stopped by for a quick visit, and missed me!
AAARRRRuuuGGGGHHH!
I knew she was planning to visit, but I didn't know when! Poop!
So, we rushed back to the room—just in case—and I found an apple and a CD on the bed.
She left me gifts!
And on my white board, she left a message.
And unknowingly, she got me back for my "how many laps is a mile" shenanigan.
You see, this young lady speaks and writes Chinese.
And the message...is in Chinese.
And she won't tell me what it says.
Zing!
It was a good day.
Feeling Good
Mom left, and I was left to my own devices—my laptop, my ipad, my phone.
It was a super-social day. I spent a lot of time reading and messaging and...connecting.
That was what mattered. Connecting.
My buzz remained, but I was slowing.
A few more phone calls.
Settling down.
Readying.
Round Two was about to begin.
Try This
Dear Reader, do sit quietly for a moment. Imagine it is a warm day. You're thirsty, but not parched. In front of you is a tall, cool glass of something delicious.
Reach out for it.
Touch the glass. Feel the cool. Savor the condensation that dances on your fingertips.
Pick it up.
Drink it.
Feel the cold flow down your throat and into your warm belly. Sense the liquids mix and swirl.
Refreshed?
Chemotherapy is not like that.
Oh, you get the cool sensation thing. And you get the flowy thing. And you definitely feel it hit your stomach.
But "refreshing" ain't in it.
It's more like devastating.
Now's a good time to remind ourselves of a few very important facts. Chemotherapy is poison. Chemotherapy is bringing you close to death, so you may live.
And I'm taking my first steps.
Facebook Post I'm fighting it now. First major side-effect...the worst hiccups of my life (combined with acid reflux from hell). Doesn't sound like it would be bad, right? Wrong. It's awful. But I was able to get this done in the middle of it. Staying focused...
I spent the next several hours writing. I'm writing this now on the tail-end of it.
I've never experienced anything quite like that.
My stomach was never nauseous, but the hiccup spasms were so strong that they were productive. Worse, it was all acid. Worse, still, the acid was rising in my throat, triggering me to vomit.
Not. Good.
Nurse Carol was my guide. A few phone calls, a few meds, and a long, long number of seconds later, my stomach finally becalmed.
No vomit.
Lots of sweat.
's OK.
Goodnight
I sign off this post oddly.
I don't know what will happen overnight. At the moment, I am receiving the tail end of my cisplatin for the evening. I have several secondary medications on their way, but in a few minutes I should be able to secure some sleep.
Sleep, please let me sleep.
In this telling of it, I am leaving a lot out of this day. Some of you know that. I will get to those other things in time. I only have so much in me.
I believe I am on the threshold of something here. I believe tonight and tomorrow will be my crossing over into...something.
I feel the drugs in me. I feel them accumulating. I feel their effects. It's happening.
It's real.
I'm not scared. I'm uncomfortable. My focus is becoming animal—that which reduces pain and discomfort is my friend. All else is nothing.
I wrote that last sentence as I gagged on a belch that was most unnatural.
I smell funny. Like medications, not sweat.
My scent and taste are morphing as I sit here.
Platinum is circulating in me. It warms, a little. It burns my throat. My nose is running.
This is real time not edited.
I feel my gums warm, particularly near my rear molars. Warm, then recede, Warm, then recede. My heart feels like it's being bathed under a warm flow of tub water. The platinum warms. And it burns.
It circles up to my throat again, gagging me. Worst acid reflux ever.
And deep in my ears things feel warm, too.
There's an apple in my throat, deep. Uncomfortable. Choking me.
I sip some water. It does nothing. It lands in my stomach like a cold stone and sits there, lumpily. Then it wells up. And the apple chokes me again.
I have to pee. But I'm a little...off. My legs feel like balloons. I'm swelling, and its pooling in my thighs.
Whose body is this?
I'm going to try to sleep now.
I hope it goes well.
Please know that I deeply appreciate all your messages. I appreciate all of your wishes.
It matters.
And as I cross that threshold, I carry you with me.
I've had two good days, but the meds are beginning to exact their toll. If Benadryl makes you stoopid, this melange flowing into my body is making me stoooopider and stoooooopider.
It's remarkably hard to do simple things...like type. The words are there; they go from my mind to my fingers, but other things appear on screen.
And so it begins...
As before, this post is authored after the events. Unfortunately, I no longer have the same energy I had whilst living those events. It may come across in the reading. Believe me, Tuesday and Wednesday were GOOD days. I write this Wednesday night, and the wheels are slipping off as I type...
Cycle 1. Day 2. Word of the day: Awesomeness
It started with a few shout outs!
Facebook Post from Friend Where is Ray Whitney this morning? Do we have a sighting? Perhaps Nurse Cratchet can help? Pretty boy Floyd how are you doing this morning? Enquiring minds want to know! You've got this!
And Another What up today? How's your gorgeous and flowing hair?
That's not a bad way to start the day, is it? You awaken, check in on the world, and people are asking for you. Wow. Not feeling lonely at all!
I started a routine. I got up and made my bed. I straightened the room, fussing in a most-OCD way. I then sponge-bathed and brushed my unruly and filthy locks.
I have a feeling that routine will be important soon. I will need things to focus on—marginal gains toward specific milestones. Making my bed is so abhorrent to me on a normal day, that it makes perfect sense to adopt it in this environment. Whatever shakes me up.
Facebook Post Hey! I'm here! It's been a really good day! I'm riding the positive wave at the moment, and it is good.
After writing that on Facebook I worked to put together the "A Punch in the Neck" article for Wheelsucker.
Nurses and doctors came in and left. I was poked and prodded. And in walked two of my friends, who happen to be colleagues. Surprise visit! Real people!
I played host, and we chatted, and in walks Mom!
Wow!
Visitors are good for the soul. Fortunately, I was feeling good and up for the visits. My energy was up and we were able to joke and gab and just enjoy.
My friends left, and Mom and I ate lunch together. Just for the record, the food here is less-than-desireable. Much of it is horrible. A few things are terrifying. It's just the kind of food that you want nowhere near you when feeling ill—so let's serve it up!
Mom, however, delivered real food. It was good.
Poop
Among the joys of hospitals—and chemotherapy in particular—is that your bowels become the focus of much interest, attention, and conversation. Meds make you constipated. And that can be bad.
As a two-a-day man, this is of profound interest to me.
However, at this point in the narrative, I will refrain from much detail. Suffice it to say that I am still able to produce, though at odd intervals, and I have started on a maintenance dose of Colace.
Pee
This is serious. I need to watch for this.
One of my medications—ifosfamide—causes serious kidney and bladder damage, if it is not adequately managed with other medications and water. So, I need to drink—a lot!—and I need to monitor my pee.
Yellow = good. Brown = not so good. Blood = bad.
On Wednesday I drank 6 liters of water, in addition to the three or four bottles they pumped into me as IV fluid.
My pee is brown.
I got more drinkin' to do.
Steppin' Out
I'm causing a ruckus.
When my doctor and the resident visited, they mentioned that I should be sure to get up and walk about to help "keep everything moving".
I responded: "Great! How many laps?"
Dead air.
"How many laps in a mile?"
They didn't know, but they assured me that the nurses would know (because we all know that nurses know everything, make everything happen, and generally run the joint!).
So, when my nurse and her assistant walked in, I asked.
Ashley, I have a question for you. It's a test. I was told you know the answer.
I looked at her assistant, Michelle.
And if she doesn't know, you MUST give her crap about it all day!
Awkward smiles returned to me.
So, here it is...how many laps of our ward make a mile?
Silence.
She did not know.
And thus began a day-long adventure on the oncology ward!
My room sits across from the office of the administrative nurse for the floor. All day, people go in and out to talk about this and that. I see it and I hear some of it.
For most of the day, the hot topic was: "how many laps make a mile?"
One of the nurses called the physical therapy group, and they estimated that one lap of the hallway is 250ft. Not entirely trusting that measurement, we decided to round up, and it is the officially unofficial decision of me and my nurses that it takes 22 laps to walk a mile around our ward.
You already know what's coming next...
My "real chemo" was scheduled to begin after 8:00pm, when my first, 24-hour infusion was completed. To get myself up for it, I started to walk. I got through 16 laps (with an average of 120 paces per lap), when another visitor arrived.
Monster Man brought himself...and chocolate! Whoo hoo! We chatted and I ate a little and partook of chocolate and was very happy. Bronwyn came in and started my pre-meds, so I was fed and wired.
Monster Man suggested that we finish my laps. He's a competitive runner, so he completely understands my need for concrete goals.
We walked, and talked, and laughed, and everything started to happen a little more...slowly.
The pre-meds gave over to the real meds, and it truly began. Monster man left, and I remained with Bronwyn the Good, and a long night before me.
The Night from Hell
Actually, it wasn't that bad. It was simply unsleeping.
At no point did I get more than 60 minutes of sleep before someone had to do something to check on or give me. I was infused with different drugs in close succession. I swallowed pills. I had my vitals monitored. Bronwyn extracted blood. It was a long night.
Constant Reader, today I begin a new label on my blog. "Chemotherapy". It's finally here!
Please note that I am writing about yesterday. I post this late on Tuesday, yet the events of this post are from Monday. I have been blessed with a very social day. My mother visited, as did two of my closest friends (who happen also to be colleagues). Those visits, in addition to the poking, prodding, measuring, prepping, counseling, and other actual hospital-related occurrences made this a busy day!
Cycle 1. Day 1. Word of the day: Patience
Sunday night I couldn't sleep. go figure
After hacking at the hospital wi-fi for a while, I finally fell asleep at 0300. At 0500 nurse Maryyyy awoke me for bloodwork and vitals.
I have two nurses named "Mary." One spells her name "Maire". She's Irish, 'natch. My overnight nurse also was Mary. Spelled "Mary." Clearly that was unacceptible, so I challenged er to come up with a different spelling.
Dutifully wrote her name on my whiteboard. She wrote "Maryyyy".
Now, those of you who know me know what happens next.
I pronounced her name.
Loudly.
"Mar-ee ee ee ee" with a nice, high-pitched, banshee roll at the end.
And thus she became Maryyyy.
So, after Maryyyy took my precious fluids and my other numerical particulars, I dozed for another hour before the ward's morning rhythm made it difficult to sleep.
There's a shift change at 0700 and 1900. The hours before and after the shift changed are noisy and chaotic-filled with bustle and shuffle and this and that and needles and arm cuffs and hoses and plugs and beeps and rings and clunks and grunts.
You don't come to the hospital to rest.
Maryyyy became Maire at the shift change, and the wait began.
Facebook Post My first post from my first morning in the clink. I'm on three hours' sleep, nothing by mouth since 11:00 last night, awaiting a procedure. Kickin' it.
To Port or Not to Port
This nurse and that doctor and this resident and that administrator and a few dancing bears stopped by to update me on this and that and the other. It was a busy early morning. Though, I may have hallucinated the dancing bears.
Finally a decision:
Facebook Post It will be a port. It will not be until 2-3 this afternoon. That will be a 15 to 17 hour fast on less than three hours' sleep. And I realize that sounds like whining. It's not. I'm in a good place and a good mood. Hungry? Yes. Tired? Yes. But I'm not out digging ditches, and I have wonderful people around me. Rock on!
Yes, I was hungry, but that was tolerable. It was the dry mouth that was getting to me. Hospital air is dry. It's not crazy dry, like a small house with blown-hot-air heating. But it's sufficiently dry, such that after 12 hours with nothing by mouth, its irritating. I hadn't had cotton mouth in years. Ick.
So, the afternoon passed. They started another slow-drip bottle of saline (to keep me bloated!), and I waited.
I received two visits from the chaplain corps. The first was Father William (call me "William"), a Craig Ferguson doppelganger. He looked and sounded so much like the comedian/talk-show host that I kept expecting him to break out into some briliant "How to Train Your Dragon" Scottish-ism.
My other visitor was a charming, nattily-dressed gentleman (whose name escapes me at the moment). I had the sense that he was a Baptist minister—t'was something about his dress and presentation. In both cases I told them that I appreciated their visits, that I was doing very well (as nothing had happened yet), and I hoped that they would stop by in later in the week when I expected that things would get...different.
You see, Email, Facebook, and a visit from my parents kept the day moving along. I was not lacking entertainment. Social media, reading, the phone...all were working for me. I was in a really good place.
But then, it is Day 1.
And I'm still feeling fine; but that may change on a dime.
The Transporter
I was called down to get my port imported. I was told my Transporer was on his way.
I love the job title, and considering that the Jason Statham Transporter movies are among my guilty pleasures, as soon as he arrived I asked him if we would have our won theme music. (Seriously, flying Audis, over-the-top fight sequences, and Eurotrash club beat soundtracks are not my daily fare, but sometimes you need to sit back with the popcorn and just gorge yourself!)
We didn't have theme music, but we had a pleasant conversation. He was 35, but he didn't look a day over 17. He had been at the hospital for more than ten years, and he knew everybody as he wheeled me from building to building, I felt like I was being escorted by the Mayor of GUH.
We chatted, and it turns out her was getting ready to leave the hospital permanently. He finished his degree in crime scene investigation and was soon to be on the market to do crime scene analysis. Yep, he admitted to watching too much TV. But he took a course in the subject, loved it, and he's attracted to the dynamic adventure of it. Not so much the paperwork, but he said that for the money (which sounded pretty good), he would put up with it.
Good luck to him!
Waiting, More Waiting
I was wheeled and left in the hallway of the radiology center in which I would have my procedure. (As a reminder, installing a port involves entering my jugular vein to gain access to my vascular system. They then treading my veins with a long tube that connects on one end to my subcutaneous port, enabling the infusions to flow directly into my heart.)
I waited and listened, snuggled under three pre-warmed blankets. They keep that area cold—I believe to
help maintain a sterile environment, and because many of the radiology machines generate heat.
Eventually I was collected and briefed. I signed the permissions and got prepped. I gave them two warnings.
First, I warned them that I am chatty when under sedation. It was possible that I would talk through the entire procedure (and not remember a thing about it for years). I told the nurse the story of my wisdom tooth extraction (I think I was 18 at the time). When I emerged from the sedation, I couldn't figure out why everyone in the room had stupid smiles on their faces—like someone had pulled off a successful practical joke. I learned months later (of the nurses was friendly with my parents) that I had sung along to the muzak—throughout the entire extraction—and that they were amazed at my note-perfect performance of all the Barry Manilow tunes.
Second, I warned them that my resting heart rate is 43 beats per minute. Dear reader, if you are athletic, and you go in for a procedure, FOR GOD'S SAKE WARN THEM! most of their alarms go off if you drop below 50 bpm. And those alarms make them very nervous. I needed to let them know that I would drop into the high thirties—and it was OK!
I was brought into the room, and slid into bliss. The placed me on a wonderfully warmed table. It was lovely. The room might have been 50 degrees, and I got to lie on a heated mattress draped in oven-warmed blankets. The next thing I knew, I was being lubed (for the electric sensors) and shaved (for the incisions).
Pampered, I was. Lubed, shaved, warmed...how would this end? People pay good money for this!
Getting It Done
They started giving me sedation. I overheard Theresa, the nurse anesthesiologist, say "He nailed it...43." All was good, and I drifted into my twilight.
I won't tell you precisely where I went in my dreamland, but I can tell you that it involved two things.
First were visions of a specific woman and the positive resolution of my crush on her. No, not sex (shocking, I know!) It was lovely. That segued (in the way of Dream) into adventuring on various waterways on a stand up paddleboard. Visioning, I was. Alone and with company, in fine weather and not-so-fine, I early-spring paddling on my local reservoir and summer paddled in Maine. Lovely escapes.
As I paddled with my Lady of the Lake, dappled light and bliss, I was overcome by the oddest sense that someone had punched me in the throat. I emerged a little and heard some operating room chatter. I head a few grunts that may have been mine, and, indeed, I someone was punching me in the throat.
"Meh", I thought, and I dove back down into Dream.
You know how you're having a great dream, wake a little, and then try to get back into the dream at precisely the same point you left it? And you know how that happens...like...never? Not then. Not me. I opened my Dream eyes and found myself right back with her, riding the wave, splendoring the breeze, happy.
Sedation is joy.
And it was done. I emerged fully. They told me all went well. We as they cleaned up I lay there and we chatted about heart rates, triathlons, endurance events, and injuries. My people!
I spent one hour prone in the recovery room. With the major vacular incisions, I needed to keep my blood pressure steady and low (my normal BP is 117/68) to allow everything to clot and heal. Springing a leak is a bad thing!
Transporter II
When it was time to go, my next transporter appeared. He was a well-built, handsome lad from South Florida. Women and men swooned in his wake as he wheeled me through.
The best part wasn't his gorgeousness.
The best part?
We had a soundtrack.
When I asked him my standard question, he said: "what do you want to hear?"
What d'ya got?
"Christmas songs."
Cool! Let's roll!
And he whistled Christmas carols as we rolled.
It made my day!
Back at Home
Facebook Post
Just got out of procedure. Feel like ive been punched in the neck. Oh, yeah, right t. Thats because i was juet punched in the neck.
Note, this is precisely how I typed it when I posted it.
Sedation is joy!
It was 1900 Monday night. The original plan was for me to start my infusions at noon on Sunday. We were more than a little late.
So, as soon as I hit the room, Maire was on it. She brought me some food (a fabulous sandwich procured by my parents earlier in the day and stored in the fridge for just this moment). and as I ate she started my pre-meds. For those in the know...
Benadryl - 50mg
Pepcid - 20mg
Zofran - 16mg
Dexamethazone - 20mg
These went directly into my new toy. It felt...weird. I noticed the temperature difference of the injections. One was warming, a gentle cascade of happiness passing along my soul. Another...not so much. Imagine a cool wave passing though your heart—like one of those ice-deep fears that sometimes befall you. That's exactly how it felt.
The Benadryl came last.
Facebook Post Getting closer...just had my pre-chemo medications fed in through my port. Benadryl, Pepcid, Zofran, Dexamthozone. I felt the warmth of one of the meds—giving new definition to "heartburn" and e Bemadryl has hit me like a jackhammer. I've got this...
Imagine someone walking up to you and smacking you across the face with a large fish.
That's exactly what it did not feel like, but the affect was the same.
It was shocking and disorienting and unexpected and mind-bending.
It was drunkenness without the taste.
It was stoopidity.
It involved drooling.
I. Was. Out. Of. It.
The rational part of me knew that I had an hour before they would administer my first actual chemotherapy. It wanted me to soldier through Delirium, so I would be lucid enough to respond to the infusion. Anaplylaxis is the initial side effect of Taxol, and I needed to be aware enough to read my body's reaction to the drug.
Meanwhile, little bits of me kept falling off. Rationality be damned! The residual sedation and the fresh Benadryl synergized somewhere in my metabolism, and I was a hot mess. I felt like a Popsicle on a warm day. At my core was the thin stick of my rational resolve. Everything else was melting.
With my hands free and my food eaten and Maire leaving, I quickly made two phone calls—one to the Little Angels, the other to my parents.
I have no idea what I said.
All I know is that I made contact, and it felt good.
I held on. It was exactly like the long chase I did during Pelotonia in 2011. Only now, my rabbit was the minute hand on the clock at the foot of my bed. I stared at it, willing it to change, to move, to advance, to tick...
And So It Begins
The clock stuck. In walked Bronwyn, my nurse for the night. Welsh. clearly, I am destined to be nursed and counselled by Great Britian—Scottish chaplain, Irish and Welsh nurses...for me, it's perfect.
She hooked the bags onto the IV tree, connected the tubes, and it started to drip. Chemotherapy began.
I would receive 520mg of Taxol (paclitaxel http://en.wikipedia.org/wiki/Paclitaxel) over 24 hours.
We chatted a little about nothing I can remember, both knowing that our talking was merely a pretense as we awaited any reaction to the meds. Chances were, if I reacted, it would be in the first ten minutes.
No reaction.
Nothing.
Thank the gods!
I relaxed, embracing the warm bosom of my medications. Twilight became dusk, and I slept.
Sleeping with the Angels
My normal-life sleep routine includes me waking 2-3 times every night. In the hospital, your sleep routine includes being awakened 2-3 times every night as they tap you for blood and measure you for temperature, blood pressure, heart rate, and blood oxygen level.
In other words, it was a normal night.
When I slept, I slept.
When I emerged, lovely female voices purred as they did things to me. When they left, I went to the bathroom, returned to my cocoon, and slept some more.
Constant Reader, this is a break in style. I'm seeking a lighter way to approach a heavy topic.
It's also notable in that this post published itself some days ago. It seems that I drafted it and set a future publication date, to force me to work on it some more. So it dutifully did what I told it to do. Only a handful have read it, so I am re-posting it.
Considering that today is the day the drugs start pumping, it's timely.
I'm running out of ways to phrase "I'm scared." So—to increase variety—I consulted a thesaurus.
Here's what I found (commentary in parenthesis):
afraid (duh...)
anxious (yep)
fearful (right on)
panicked (if I let myself be...but I have it under control)
panicky (not a bit...seriously...I can be panicked without acting panicky)
startled (nope)
petrified (only in very particular moments, and only for a second)
shaken (absolutely...far more than stirred)
terrified (at times)
aghast (nope)
having cold feet (not so much)
panic-stricken (nope)
terror-stricken (nope)
Ours is a rich language, and it's flexible. My current personal favorite: "shit-stained".
Seventy three days ago I was symptomatic. Odyssey II had begun.
Over those 73 days I visited four hospitals. I tolerated myriad needles. I survived multiple scans. I was twice dissected. I attended way-to-many office visits. I researched, I wrote, I called, I listened, I argued, and I traveled.
Oh, the places I've been.
When this began, I weighed 174. Today I weigh 198. That's doctor's orders, a lot of pizza, some stress, some I-don't-give-a-shit-ness, and a lot of not riding my bikes.
And after 73 days, here I am.
I'm in the hospital, and things are happening...but slowly.
I should be 12 hours into my first infusion, but there was a problem. Not a huge problem. Not a threatening problem. But a day-delaying problem.
The quick version:
My doctor preferred that I not get a mediport (an implant that is placed near the collarbone that has a tube that is inserted down to a major vein near the heart, enabling infusions without many needles going into fewer veins in my arms and hands).
My first infusion lasts 24 hours and contains Taxol, a drug that is corrosive to tissues. If there is a leak—such as might occur were I to loosen or dislodge the IV needle while sleeping or being my normal klutzy self—the Taxol will corrode tissue. That's bad.
It is a relatively new policy on the ward that any Taxol infusions lasting more than three hours need to be administered through a mediport or a PICC line (a peripherally inserted central catheter that gives prolonged intravenous access, running a line from your bicept through the shoulder and down toward the heart).
Talk amongst yourselves. I'll wait.
Doctors, nurses, and small furry animals talked it through. For three hours.
The decision...I would get something on Monday.
As of this writing, I still don't know what it will be—PICC or mediport. I'll learn in a few hours this wee morning, most likely before you read this.
In fact, it is very likely that you are enjoying a cuppa as you read this, and that I am sedated in a sterile environment while a team of very talented people plunge a foreign object through my veins toward my heart.
So, how does that coffee taste?
In other news, this ward is heaven for the single man. The scenery and conversation are perfectly amenable to my maintaining a healthy outlook and metabolism.
Was that too subtle?
How's this?
Libido: 1
Cancer: 0
Differently inspiring and uplifting was the kindness and generosity of a very dear friend. He drove me in today...and stayed for four hours. He could have left at any time, but he chatted with me through all the "to port or not to port" conversation. We talked old cars, and told him a car-related something on my Bucket List. He even paid for a lunch of real, edible food and a few extra foodstuffs.
Wow.
It was wonderful, and it set me up for a good day.
I'll dribble drabble more when I can clickityclack tomorow. I'm in a good place right now. I'm optimistic. I'm up. Things are good. But it's almost 0230. I think I'll sleep now.
