Six months ago I was starting my fourth chemo cycle. I was bloated, weak, bald, hurting. I shuffled with a cane. I weighed 225 pounds. I had no sense of smell or taste; I heard whizzing buzzes in my ears—constantly. My hands and feet felt like they were visiting the dentist—one minute they were Novocaine balloons, the next minute they gifted me stabbing pains.
I was sick.
I had not recovered from my third chemo round. Sure, the blood was recovered enough for me to receive chemo again. But I was not.
Those were dark, dark days followed by brutal nights.
- - -
Three months ago I was recovering. I was bloated, weak, bald, hurting. I walked with a cane. I weighed 205 pounds. I could smell and taste again—somewhat...it was still coming back to me. My ears buzzed occasionally. My hands and feet were little better.
I was healing.
I was exhausted, but I was recovering. My blood looked good; I needed to let my body, mind, and soul heal.
I had more bad days than good days. My nights were either a long, waking nightmare, or I slept like a man in a coma.
I slept a lot.
And I healed. Slowly.
- - -
Today I am going to do something crazy. I'm racing a bicycle.
Racing.
A bicycle.
It's a real race this time, a real event.
Yes, I've participated in two small "races". They were local, short events that enabled me to pin on a number and go.
You have no idea how important that has been for me.
Pin on a number.
Go.
- - -
One word describes the past six months: "struggle."
Another word describes me over the past six months; "fearful."
I going to write about that. It will be uncomfortable. It will hurt.
But for now, I want to focus on now.
Today I am going to do something crazy. I'm racing a bicycle.
- - -
A lot of people have done a lot of things to bring me here.
So many things have been said and heard, so many connections made and broken, my head spins.
At times I've been pathetic. At other times, ruthless. Still others, useless.
I've beaten myself inside-out; I've nurtured myself outside-in.
I've oscillated wildly. The gyre most definitely did not hold. Things. Fell. Apart.
And a lot of people have done a lot of things to bring me here.
I've learned. I've lost. I've won. I've become.
And I'm still becoming.
And today is a milestone for me, because I'm racing a bicycle for real.
- - -
My goal is modest—finish without going to the hospital.
That was a joke.
Well...
OK, it wasn't a joke.
But it's funny.
I will ride 33 hard miles through the Patapsco State Park. I will ford the river twice, carrying my bike. I will encounter steep, technical climbs that are so difficult, I will walk. Not trot, or run, but walk...barely.
And I'll be happy for the privilege.
I'll rattle down descents so steep and rocky that there's a very good chance I'll be thrown, shattering bone upon impact.
And I'll giggle all the way.
You see, I'm such a novice, I don't know that I shouldn't do some of the things I do.
And while fear has dominated these past months, careering down a rocky pitch somehow...isn't scary.
It's vibrant, alive, sizzling, present, and...beautiful.
I'll hold my breath, clenching my teeth, hyperventilate, and giggle.
And I'll suffer.
My legs will go weak, and then give out. My lungs will sear. My heart will flutter, pumping with all its strength.
My ass will hurt.
My scars will stab, then ache. My port will bruise. My back and neck will spasm.
And I'll be happy.
- - -
Six months ago I was starting my fourth chemo cycle. I was bloated, weak, bald, hurting.
Today I'm racing a bicycle.
What will be will be what will be.
I've got this.
Sunday, July 6, 2014
Tuesday, March 18, 2014
Everything I Know Is Wrong
Trauma redefines you.
It resets everything you know—each standard, basis, paradigm is renewed…different.
Cancer is trauma.*
There’s a list (isn’t there always a list?) somewhere that identifies modern life’s great stresses. Birth of a child (parenthood), death in the close family, major illness, loss of job, major relocation, marriage, divorce**… I’ve been through most of them.
Whoopie.
Cancer has been…different.
And I’m feeling it.
Today
I’m in the 11th hour and 58th minute of a divorce. I’m on the train to get a PET scan that will define my future. I’m in an epic financial crisis.
But I woke up this morning.
I’m in constant, low-grade pain. Sometimes my brain just…stops. I have the unpleasant kind of pins and needles in my feet, and sometimes it feels like someone is driving a nail into my toes.
But I’m here.
And it is so very strange to be here like this.
Halfsies
I’ve never been a “glass is half full” kinda guy. Maybe more a pessimistic pragmatist. I’ve long passed my moaning Morrissey phase. Yet, over the years I’ve known despondence. I’ve ventured deep, exploring my personal darkness. And I could go there now.
But I don’t.
And I’m not sure why.
I’d be lying, were I to write that I’m now a “half-full” kinda guy.
Yet, so many of the clichés are becoming in me.
And it is so very strange to be here like this.
I don’t know where the balance will settle. But I suspect that sometimes a cigar is just a cigar; and a glass is halfsies.
Resilience
It’s expected of you, resilience. We’re supposed to be able to suffer the slings and arrows. Outrageous fortune befalls, and we meet it. Otherwise, we’re seen as weak and needy and a whole lot of other words; there are many synonyms for “pathetic”.
To cope, we eat too much, or drink too much, or watch too much TV, or immerse ourselves into video games. We consume. And Gluttony and Lust are mere words for the excruciating passions we feel—the desperate needs that possess us…as we lubricate our resilience.
To cope, I fight…quietly. All the passions bubble and squeal. They’re there…right there. And it’s nothing to embrace them…and it’s everything to not.
I don’t always win.
But I’m winning those fights far more often than not.
Does that make me resilient?
Survivorship
Recovery is not what you think it is.
You think it means sleep and detox and quiet and rest.
And it does.
But that’s merely plot. It’s the rest of the play that matters.
I have passed through, from the two-steps-forward-one-step-back phase to the one-step-at-a-time phase. I no longer have a good day and then sleep all the next. I’m now functioning…a lot like you. But I’m diminished. Less. Compromised.
I push myself, but there’s only so far I can go.
And it is so very strange to be here like this.
Everything and everyone has changed. Everything I know is wrong.
Childlike, I’m exploring my world. Eyes are open. I’m redefining.
(And I know that the changes are in me. It’s my perception…it’s altered.)
And knowing the past, I much prefer the world I see before me.
But that past encroaches. Long shadows loom. (I want them gone!) Clarity is clouded, and those shadows weigh…heavily.
Oh, so heavily.
And it’s now, today, as I approach New York, that it grinds.
And it’s soon, when they slide the slab bearing my irradiated me through that tube…slowly, oh, so slowly…that the weight crushes.
And it’s when I’m lying motionless, surrounded by industrial sound, instructed to relax, so they can accurately measure my metabolic rates, to learn if my cancer is dead, or not… it’s in those moments of mandatory quiet that the shadows scream.
And if you were there with me, observing. You’d think all was well. I’d be dead still. A fly could land on my face, and I’d not move.
But I’d be Norman Bates, living a waking nightmare with a riot between my ears,
And this is survivorship.
Every day is new, and every day is fraught.
I’m redefining, not relearning.
I’m fighting.
I’m releasing.
I’m becoming…
Alone…and Not
I’m completely alone…as are we all.
I’m connecting…as few of us do.
I’ve been all around this one. I am absolutely certain that I am alone.
When I am in that tube later today, no one is with me. Even if you were there to hold my hand (as has happened before), I’d be alone.
And that’s OK.
In fact, it’s necessary.
Your life’s journey is your own. You may choose to share it with others—to varying degrees—but it is yours.
And sharing it is the greatest gift we give to one another.
And enabling ourselves to accept that gift from others is the greatest gift we can give…to ourselves.
I’m getting through the latest phase of my journey, because I share it with you. And because you share yourselves with me. And because I’m letting you in.
Cancer changes things. It grinds down your defenses. It opens you to possibilities.
It opens you.
And for me, that means connecting.
It means accepting that I am alone.
And accepting that I am with you.
And being at peace with a contradiction.
And it is so very strange to be here like this.
But maybe, together, with little effort on your part, we can banish the shadows. Or, at least contain them. Or, ignore them. Or…in time…accept them.
What a beautiful thing that would be.
What will be will be what will be...
...I got this.
-----
*Cancer is myriad things. Trauma is one of them. Here I seek not to limit cancer’s influence, but to corral it. A bit.
**War seems to never be on those lists. I think those who have been in combat would offer a different view…
Thursday, February 20, 2014
Silence Is...
Silence Is...
Golden?
Desolation?
Peaceful?
Fraught?
Silent?
I've been quiet, largely silent.
There are reasons...more than a few.
Some are big; some small. Some are real; others...contrivances.
Interestingly, none are excuses. There's no need. I'm in an oddly free space. I'm not beholden to anyone.
Except myself...
You have no idea how strange that feels.
...
There is one reason for my silence that dominates. It's probably not what you think.
True, I've been focused on recovery....living. When I first got home after Cycle 4, walking was a huge effort. Stairs were a Himalayan challenge. Sleep was constant, but it was rarely restful.
I was toxic, poisoned, sick, weak. And that was my body.
I was sick and tired of being sick and tired. That was my spirit.
I was sick and weary. That was my mind. When it worked. It seldom did.
Chemotherapy changed me, and not because I'm fat and bald. It...quieted me.
True, I've mindfully (when it worked) become a consumer...not a producer. I've read (when I could) graphic novels that expanded my imagination. I've watched more movies than is healthy. I've not listened to much music...I can still only handle one brain input at a time...but the television and movie consumption make up for any shortfall in my modern media mastication quota.
I have not written.
I've recovered and consumed. I've been as passive as possible.
I've parented.
I've slept.
But I haven't written.
For one reason...I'm afraid.
...
I'm on the train to New York to visit my doctors at Memorial Sloan-Kettering Cancer Center. It's a familiar environment. The rumble and clank of the train, the sour stench, the cloying atmosphere can only be Amtrak.
This should have happened last week, but New York was closed. A storm was rolling in, promising apocalyptic visions that included heaps of snow, howling winds, and wayward Russian cargo ships floating down 42nd street. (I told you I watched too many movies...). So, they closed the city. MSK rescheduled, Amtrak rerouted, I stayed home.
Which meant I got to wait. More. More waiting. More limbo. More...fear.
You see, I don't know what's coming.
That's not strictly true...I know surgery is coming. But that's like saying that death is coming (was that in bad taste?). You know it will happen, but you don’t know what form it will take. And you don’t know when.
Surgery is coming. I don’t know what form it will take. I don’t know when it will happen.
And that scares me.
You see, in 2006 I had two surgeries. The first, an orchiectomy, hurt like hell, removed part of my manhood, left me with nerve damage that eliminated my primary erogenous zone, yet had relatively easy recovery.
Sure, leaving the hospital was brutal, car rides were agony, and I was constantly nauseous from the pain and the constant sensation that someone had kicked me in the balls (er… ball). But it was manageable.
How I long for my surgeon to tell me that my next surgery will be something like that. I would weep with joy.
Seriously.
The second of my 2006 surgeries was different. It’s got a fancy name: retroperitoneal lymph node dissection. It’s so fancy, it gets an acronym: RPLND.
During RPLND they slice you open from sternum to pubic bone along the center line of you abdomen, curving around your navel. They open you up, and they take out your entrails (and gods know what else…), so they can get to the lymph nodes that live along the inner wall of your back. They open you, dig a well, and scrape out bits of you. Then, they put Humpty Dumpty back together again.
In my case, I awoke in the recovery room screaming. They had the wrong medication mix in me, and I could feel…everything. I later awoke in a hospital room with a bloated carcass, railroad track staples holding my abdomen together, and pain meds that just kept the pain at bay.
Long story longer…it took me a week to awaken my bowels, weeks to be able to function basically, months before I was ready to face life outside the home, and years before I felt like me.
How I long for my surgeon to tell me that my next surgery will be nothing like that.
But I doubt it.
Here’s the thing. I don’t know how you get there from here without removing my bowels. I’m an amateur anatomist. I’m no surgeon. But I know how challenged they were when they tried to perform a biopsy. Things haven’t changed that much…
Of course, I’ve done the Internet research I could. And I learned very little.
I’ve lost a lot of sleep. I’ve lost my sense of humor.
As today has approached, I’ve gotten quieter and quieter…because I am afraid of what the doctors will tell me.
But that’s not all…
My situation—from day one—has been…interesting. I’m a late-relapse (they think), which is rare. I’m in my mid-forties, which is rarer. And my cancer is not conforming to type. The doctors love me—not merely for my sterling personality and astonishingly good looks—because I am fascinating. They can learn from me.
Whoo hoo.
One of my cancer’s non-conforming behaviors is that my blood markers are negative. In other words, one of the primary methods they use to monitor your cancer’s activity is unavailable to them. It’s like flying an airplane without instruments or piloting a boat without charts or stars. It means that they tap into their collective experience to guide their decisions. About my medical care. About my life.
One of the great lines that was delivered to me straight-faced was: “it walks like a duck and looks like a duck…so we’re going to treat it like it’s a duck…even though it doesn’t quack like a duck.” My cancer is a foul fowl.
So, while the chemotherapy had a positive effect on my tumor (shrinking it by some 30%+), and while my CT scan shows no additional tumors…what do we really know about what’s going on in there?
Not much.
Which is the other thing I fear…what will they find when they get in there?
I know the tumor is there. I have unambiguous pain. It sits in my hip and radiates down my leg. Sometimes it hurts me after I eat…as food moves through my bowels. It’s no fun.
So, what else is going on in there?
I know the tumor is embedded in the psoas muscle, and that it was directly pressing against one of the two branches of the iliac artery. But what does “embedded” really mean? What else is affected? What tissue damage is in there?
Which brings me to my third resounding fear…what will life be like after surgery?
That’s a simple sentence that’s really hiding a bunch of others.
Each of those is an essay. In simple terms, here is what’s in front of me:
---
Silence, t’was born of fear.
I have a lot to fear…the type of surgery, what they will find, life after…it can be crushing.
I sleep alone. I awake alone. My children are growing. When fear sets in, it meets and is multiplied by loneliness. Together, they can make a hell of heaven, crushing a soul.
I fight it. Sometimes loudly. Sometimes silently.
But I fight it.
Silence is…
Golden?
Desolation?
Peaceful?
Fraught?
Silent?
I've been quiet, largely silent.
There are reasons...more than a few.
Some are big; some small. Some are real; others...contrivances.
Interestingly, none are excuses. There's no need. I'm in an oddly free space. I'm not beholden to anyone.
Except myself...
You have no idea how strange that feels.
...
There is one reason for my silence that dominates. It's probably not what you think.
True, I've been focused on recovery....living. When I first got home after Cycle 4, walking was a huge effort. Stairs were a Himalayan challenge. Sleep was constant, but it was rarely restful.
I was toxic, poisoned, sick, weak. And that was my body.
I was sick and tired of being sick and tired. That was my spirit.
I was sick and weary. That was my mind. When it worked. It seldom did.
Chemotherapy changed me, and not because I'm fat and bald. It...quieted me.
True, I've mindfully (when it worked) become a consumer...not a producer. I've read (when I could) graphic novels that expanded my imagination. I've watched more movies than is healthy. I've not listened to much music...I can still only handle one brain input at a time...but the television and movie consumption make up for any shortfall in my modern media mastication quota.
I have not written.
I've recovered and consumed. I've been as passive as possible.
I've parented.
I've slept.
But I haven't written.
For one reason...I'm afraid.
...
I'm on the train to New York to visit my doctors at Memorial Sloan-Kettering Cancer Center. It's a familiar environment. The rumble and clank of the train, the sour stench, the cloying atmosphere can only be Amtrak.
This should have happened last week, but New York was closed. A storm was rolling in, promising apocalyptic visions that included heaps of snow, howling winds, and wayward Russian cargo ships floating down 42nd street. (I told you I watched too many movies...). So, they closed the city. MSK rescheduled, Amtrak rerouted, I stayed home.
Which meant I got to wait. More. More waiting. More limbo. More...fear.
You see, I don't know what's coming.
That's not strictly true...I know surgery is coming. But that's like saying that death is coming (was that in bad taste?). You know it will happen, but you don’t know what form it will take. And you don’t know when.
Surgery is coming. I don’t know what form it will take. I don’t know when it will happen.
And that scares me.
You see, in 2006 I had two surgeries. The first, an orchiectomy, hurt like hell, removed part of my manhood, left me with nerve damage that eliminated my primary erogenous zone, yet had relatively easy recovery.
Sure, leaving the hospital was brutal, car rides were agony, and I was constantly nauseous from the pain and the constant sensation that someone had kicked me in the balls (er… ball). But it was manageable.
How I long for my surgeon to tell me that my next surgery will be something like that. I would weep with joy.
Seriously.
The second of my 2006 surgeries was different. It’s got a fancy name: retroperitoneal lymph node dissection. It’s so fancy, it gets an acronym: RPLND.
During RPLND they slice you open from sternum to pubic bone along the center line of you abdomen, curving around your navel. They open you up, and they take out your entrails (and gods know what else…), so they can get to the lymph nodes that live along the inner wall of your back. They open you, dig a well, and scrape out bits of you. Then, they put Humpty Dumpty back together again.
In my case, I awoke in the recovery room screaming. They had the wrong medication mix in me, and I could feel…everything. I later awoke in a hospital room with a bloated carcass, railroad track staples holding my abdomen together, and pain meds that just kept the pain at bay.
Long story longer…it took me a week to awaken my bowels, weeks to be able to function basically, months before I was ready to face life outside the home, and years before I felt like me.
How I long for my surgeon to tell me that my next surgery will be nothing like that.
But I doubt it.
Here’s the thing. I don’t know how you get there from here without removing my bowels. I’m an amateur anatomist. I’m no surgeon. But I know how challenged they were when they tried to perform a biopsy. Things haven’t changed that much…
Of course, I’ve done the Internet research I could. And I learned very little.
I’ve lost a lot of sleep. I’ve lost my sense of humor.
As today has approached, I’ve gotten quieter and quieter…because I am afraid of what the doctors will tell me.
But that’s not all…
My situation—from day one—has been…interesting. I’m a late-relapse (they think), which is rare. I’m in my mid-forties, which is rarer. And my cancer is not conforming to type. The doctors love me—not merely for my sterling personality and astonishingly good looks—because I am fascinating. They can learn from me.
Whoo hoo.
One of my cancer’s non-conforming behaviors is that my blood markers are negative. In other words, one of the primary methods they use to monitor your cancer’s activity is unavailable to them. It’s like flying an airplane without instruments or piloting a boat without charts or stars. It means that they tap into their collective experience to guide their decisions. About my medical care. About my life.
One of the great lines that was delivered to me straight-faced was: “it walks like a duck and looks like a duck…so we’re going to treat it like it’s a duck…even though it doesn’t quack like a duck.” My cancer is a foul fowl.
So, while the chemotherapy had a positive effect on my tumor (shrinking it by some 30%+), and while my CT scan shows no additional tumors…what do we really know about what’s going on in there?
Not much.
Which is the other thing I fear…what will they find when they get in there?
I know the tumor is there. I have unambiguous pain. It sits in my hip and radiates down my leg. Sometimes it hurts me after I eat…as food moves through my bowels. It’s no fun.
So, what else is going on in there?
I know the tumor is embedded in the psoas muscle, and that it was directly pressing against one of the two branches of the iliac artery. But what does “embedded” really mean? What else is affected? What tissue damage is in there?
Which brings me to my third resounding fear…what will life be like after surgery?
That’s a simple sentence that’s really hiding a bunch of others.
- What will my recovery look like?
- What long-term affects do I face?
- What will my medical life after Cancer 2 look like?
- What will my survivorship look like?
For those who think I’m wallowing, notice that I assume that I will survive this. I do. I’m not ready to go, and this isn’t going to be what gets me. My time isn’t now. I know this. I don’t know when, and I don’t know how she’s going to come for me, but I do know this isn’t it.
Each of those is an essay. In simple terms, here is what’s in front of me:
- Recovery could be like orchiectomy, or like RPLND. It could be weeks or months into years.
- Long-term effects could—on the extreme—include my losing my leg. Lesser affects include nerve damage that diminishes leg function and strength. There also could be damage to my bowels, with myriad complexities. There’s a lot that could go wrong. And we’re not talking lightning-strike odds. Oh, and did I mention the long-term effects of chemotherapy? Some of those are down the road for me…
- Medical life includes…what? Blood markers are useless. Do I have CT scans every X months? PET scans annually? How much radiation do I need to absorb through my imaging? How do we know that I am cancer-free?
- Survivorship means different things to different people. How will I live my life in the aftermath? What will I do to be worthy?
---
Silence, t’was born of fear.
I have a lot to fear…the type of surgery, what they will find, life after…it can be crushing.
I sleep alone. I awake alone. My children are growing. When fear sets in, it meets and is multiplied by loneliness. Together, they can make a hell of heaven, crushing a soul.
I fight it. Sometimes loudly. Sometimes silently.
But I fight it.
Silence is…
Wednesday, February 19, 2014
So, How Are You Doing?
A lot of kind friends have asked me this question recently. Here is a quick update…
I had a CT scan in January. The tumor appears to have reduced in size in two of three dimensions. The other was larger. Since it is soft tissue, it makes sense that it could have changed shape. The good news is that no other tumors were spotted. Other than that, it was a good CT…no news is good news.
I am still recovering from chemo. I have neuropathy in my toes and fingers. Sometimes I get befuddled. I no longer get the seizure-like brain shocks that were so debilitating during the first three weeks post-hospital. Even so, my brain has distinct limits. More than one source of stimulus is almost impossible to handle. I cannot easily read. I absolutely cannot read and listen to music simultaneously.
My sense of taste is coming back. Chocolate still is a bit…odd. Most other foods are fine. Plain water makes my stomach churn—this is psychosomatic from my time in the hospital.
I sleep better now. I feel I have mostly de-toxed, so I am no longer waking in deep pools of sweat. And when I awaken, I know where I am. That’s a good thing.
I have pain. The tumor hurts. Certain movements let me know with absolute assurance that there is something wrong.
I’m weak, but I’m stubborn, so I do too much. Think snowshoveling. Think sledding. Then think sleep and ibuprofen.
I’m weak, and sometimes things go wrong. I’ll be walking along, and my legs will declare that they are quite done with walking, thank you very much, “so we’ll wobble a bit and freak you out”. Yeah, it’s fun. It’s also why I will walk with a cane, even though I seem OK. At any moment, things won’t be ok.
And that’s the gist of it: at any moment things won’t be OK. And it definitely freaks me out.
Emotionally, I’m on a roller coaster and I’m trying to keep the brakes applied as much as possible, while at the same time allowing it to run. It’s a delicate balance, and it’s not for the faint of heart. It’s also not something for a person who does not live alone. If there is a good part of my isolation, it is that I am learning to (cope, manage, function, thrive) on my own.
Spiritually, I’m learning to let go. It’s not easy. I don’t care about a lot of the things I did in former times. Some things that linger shouldn’t. Others should. I’m working through which is which. It gets confusing.
And that’s another gist…there’s a lot of confusion and uncertainty; l am learning to live with it.
Whether I like it or not, it is what I need to do.
I do eat too much—of the wrong things. That’s my primary vice. My other is that I long for a partner.
I’m also dealing with a lot of fear. I’m writing another post about that. Stay tuned.
At the moment I am without much humor. Hope is assumed, not “hopeful”. Positivity does not reign.
There’s a lot of “getting on with getting on” in my world.
The Little Angels are what keep my head. Time with them is precious. I know it.
So, that’s the quick update. Nothing poetic or prosaic. It is what it is…
…for now.
I had a CT scan in January. The tumor appears to have reduced in size in two of three dimensions. The other was larger. Since it is soft tissue, it makes sense that it could have changed shape. The good news is that no other tumors were spotted. Other than that, it was a good CT…no news is good news.
I am still recovering from chemo. I have neuropathy in my toes and fingers. Sometimes I get befuddled. I no longer get the seizure-like brain shocks that were so debilitating during the first three weeks post-hospital. Even so, my brain has distinct limits. More than one source of stimulus is almost impossible to handle. I cannot easily read. I absolutely cannot read and listen to music simultaneously.
My sense of taste is coming back. Chocolate still is a bit…odd. Most other foods are fine. Plain water makes my stomach churn—this is psychosomatic from my time in the hospital.
I sleep better now. I feel I have mostly de-toxed, so I am no longer waking in deep pools of sweat. And when I awaken, I know where I am. That’s a good thing.
I have pain. The tumor hurts. Certain movements let me know with absolute assurance that there is something wrong.
I’m weak, but I’m stubborn, so I do too much. Think snowshoveling. Think sledding. Then think sleep and ibuprofen.
I’m weak, and sometimes things go wrong. I’ll be walking along, and my legs will declare that they are quite done with walking, thank you very much, “so we’ll wobble a bit and freak you out”. Yeah, it’s fun. It’s also why I will walk with a cane, even though I seem OK. At any moment, things won’t be ok.
And that’s the gist of it: at any moment things won’t be OK. And it definitely freaks me out.
Emotionally, I’m on a roller coaster and I’m trying to keep the brakes applied as much as possible, while at the same time allowing it to run. It’s a delicate balance, and it’s not for the faint of heart. It’s also not something for a person who does not live alone. If there is a good part of my isolation, it is that I am learning to (cope, manage, function, thrive) on my own.
Spiritually, I’m learning to let go. It’s not easy. I don’t care about a lot of the things I did in former times. Some things that linger shouldn’t. Others should. I’m working through which is which. It gets confusing.
And that’s another gist…there’s a lot of confusion and uncertainty; l am learning to live with it.
Whether I like it or not, it is what I need to do.
I do eat too much—of the wrong things. That’s my primary vice. My other is that I long for a partner.
I’m also dealing with a lot of fear. I’m writing another post about that. Stay tuned.
At the moment I am without much humor. Hope is assumed, not “hopeful”. Positivity does not reign.
There’s a lot of “getting on with getting on” in my world.
The Little Angels are what keep my head. Time with them is precious. I know it.
So, that’s the quick update. Nothing poetic or prosaic. It is what it is…
…for now.
Monday, January 6, 2014
Cycle 4, Day 2 - Threshold
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.
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