Constant Reader, no blog has been an indicator of no energy...
You have just passed through another holiday season. You crossed the finish line of another annual lap around the calendar. Congratulations! I truly hope your time was filled with celebrations of live and life, and that any stresses have passed into the ether. May your memories be joyful!
I have just crossed into...Cycle 4. I started this chemotherapy journey at the beginning of November (too early for Christmas music, thank you very much). It's not nearly over.
Oh, I know a few of you Polyannas out there who will say "It's your final Cycle! Rejoice!" (All right, they won't say "rejoice", that's the Christmas hangover affecting me...but you get the idea...) Or "You're nearly done, you've got this!"
I appreciate the positivity, but I don't share it--not in that way. That thinking doesn't work for me. Never has; never will. I'm not the guy who responds well to "things could be worse" or "look on the bright side" types of encouragement. But that's me, it works for others.
What works for me is a style that recognizes the situation...and offers soft encouragement.
Don't get me wrong. I approach this Cycle as positively as I can.
But it scares me.
I've been sleeping, but restlessly.
Let's play catch-up...
How are you feeling?
I'm tired. Very tired. In the final week of Cycle 3 I was sleeping 14-16 hours a day. Near the end of the Cycle, nausea and reflux reappeared, but I chose not to take the meds to manage that, as I was just coming out of several days of constipation. Manage one problem, create another.So, I enter Cycle 4 exhausted, depleted—physically compromised.
Any other symptoms/issues?
I have had a runny nose and scratchy throat for five days now. The good news is that I was taking Cipro (antibiotic) throughout my recovery period, helping to minimize any cold.Fortunately, it's not something viral; that would be a serious problem.
And there's another thing.
There's no real subtle way to say it, so here goes...
Three days out of the hospital—Christmas morning, for those of you keeping score at home—I awoke with a special present. One of Santa's elves decided to leave me with a personalized, intimate gift.
I awoke with a dime-sized cyst on my penis.
Let that one settle in for a minute.
Dime sized. Penis. Ouch.
I have no idea what caused it. Sexual activity—while very high on my to-do list—has been absent for longer than I care to remember. And I had not been doing that other thing (stop snickering there in the back!). Hell, chemo has rendered functionality down pretty much as compromised as can be. When I do get aroused, it is a huge event! (Snickering now permitted.) It's a reminder that despite my unicorn uniball status, I am still a man. And that is a good thing.
The cyst, not so much.
So, what happens when you are immunocompromised and you have a cyst on your naughty bits?
You worry. You monitor. You hope it isn't doesn't grow into a Yellowstone-scale supercyst.
And you tell your doctors and your nurses...just in case.
And they examine it and give you a look that you can't translate.
And you move on to the next thing.
Because there are plenty of "next things".
Such is chemo.
So, er, moving along..how were your holidays?
Difficult. Joyful at times. But I won't lie...they were difficult.My care team and I moved mountains to make Christmas wonderful for the Little Angels. Ex-BCB and I carefully planned things, they were wonderfully executed by her and the team. I spent a little over two hours with the LAs. It was wonderful!
Then they left.
And I sought the license of the sled that had hit me.
I slept a ton that night, only to wake the next morning for a doctor's visit.
I was on a treadmill of trying to be well and spend time with the LAs and do things. But my body wasn't cooperating. It wanted none of it. All it wanted to do was sleep.
Every once in a while in a movie there's a scene where someone is hit on the head, or exposed to an explosion; they're dazed. Everything happens in slow-motion, or one of those weird alternating-frame techniques that makes your stomach lurch and swirl. The character stumbles. You stumble with them. The ambient sound—after the blast—becomes a whine, or a buzz, or a high-pitched siren. In the background are vague noises that sound familiar, but you can never quite make it out. You can't parse it. You—as audience—you feel the detachment. You're disoriented. You buzz—with danger, and excitement, and confusion.
I spent a week feeling like this, without the Iggy Pop soundtrack.
But that vibrating slow-motion head rattle happened every time
I would stand up, and often when thinking too hard—like
deciding whether or not I had the energy to go to the kitchen.
But that vibrating slow-motion head rattle happened every time
I would stand up, and often when thinking too hard—like
deciding whether or not I had the energy to go to the kitchen.
That's how every day felt. That's how I felt each time the LAs would leave my home. They are absolutely wonderful! They are an explosion of life! Of energy! Of joy!
And they leave me shattered.
That's how the holidays were: moments of joy sandwiched between bouts of mind-numbing exhaustion.
How's your head?
I don't want to be here.I don't want to be strong.
I don't want to inspire.
Hell, right now I don't understand how I can be inspiring. I want to stay at home in bed clutching onto my pillows sleeping, resting, convalescing, savoring, sweating, crying, groaning, and sleeping more.
The last two nights at home were two of the hardest nights in memory. I know what's coming this cycle. I know where I am and how I'm feeling. And I'm not looking forward to it.
And I'm alone.
When I most need someone else, no one is there to hold me.
That's not easy.
Ah, hell. I need a woman in the worst way!
But I will say this about that: I don't wonder why, or say "woe is me", I acknowledge it and try to move on. Sometimes that's easier than other times. I would be lying if I said otherwise. But I see myself getting stronger for it. What that means for my future...?
I wear the cute shirts with the clever sayings, but I'm a liar. "I've got this"; "I pooped today!"; "You can't scare me, I have daughters."; "Careful, or you'll end up in my novel."
In truth, all I want to do is curl up in a ball.
And the hard stuff hasn't started yet. That starts later today. Part of me says: "Gods, spare me this."
But another part of me...lurking and not lying...says: "Bring it."
The race is about to begin.
What does that mean?
Endurance athletes will tell you that the race doesn't begin until you've reached a point you're never reached before. When you exit your comfort zone, the real work begins.It could be mileage or effort or time...most of the time it is something mental—purely internal.
It's your race, and it's the only one that really matters. In truth, how you place in the event is merely a result—it's a byproduct of your race. It is not the race itself.
Think about that for a minute.
To win your race, you need to fight your demons, battle your doubts, confront your fears.
You need to stand tall in the maelstrom, hold your ground, and advance—pace by pace—to get beyond.
Your comfort zone is behind you—it's past-tense, nothing more than history. It informs, but it does not solve. It gives a measure of confidence, nothing more.
What gets you beyond? Your resolve.
My race begins at approximately 1500 hours today.
How will you win?
Some time ago I got a phone message from a friend of a friend out in Ohio. He's a serious cyclist, several years my senior. He's the real deal. He's a good man.
I'm paraphrasing what he said: "It takes a tough bastard to be able to ride with me the way you did a few years ago. You're a tough bastard. You've got this."
A few days ago I got a text message from the friend who routinely asks me what the word of the day is. She wrote: "Stay strong. You are one tough bastard."
I have other messages of support as well. But these two stick out for me.
One reason is that two people who have never met one another have characterized me as a "tough bastard".
I think I'm flattered. Better'n than "fat bastard". (Though I do look forward to losing this extra weight!)
The other reason is that they articulated precisely the attitude I need to get me through my race.
I need to channel everything everyone is sending me—the positivity, the love, the support. All of that is the the raw material.
I need to heat it with my burning desire to live.
I need to stoke that fire with my love for the LAs and for so many others.
I need to focus my energies, crafting something beautiful and hard and strong.
I need to become unbreakable.
I need to make a diamond.
And it takes a tough bastard to do that.
Anything else?
- I am deeply humored by the small patch of hair that refuses to fall out of my left ring finger. All my other fingers are bald. Not this one. One patch. I love it.
- Food is good. But chicken wing and fajitas were a step too far. Let's just say that I now know how to defeat constipation.
- I am struck by this quote from Bruce Lee:
Forget about winning and losing; forget about pride and pain. Let your opponent graze your skin and you smash into his flesh; let him smash into your flesh and you fracture his bones; let him fracture your bones and you take his life. Do not be concerned with escaping safely—lay your life before him.
- I want a beer. Just one. With a slice of pizza. Just one.
- My nurses are awesome.
- You walk 20.6 laps of Bles 2 (my hospital ward) to walk a mile. Now you know.
- I woke up last night at 0200 with an irrational craving for a hard taco. Clearly, I'm pregnant.
- I like being bald. And I like having long hair. Everything in-between...
- Life is beautiful
What will be will be what will be.
I've got this.