Wait! What?

First things first: The pathology report came back with no evidence of cancer.

Yes, Rachel and I are relieved we don't have to fight another bout of cancer at the moment; but it took less than ten seconds of the appointment for the lady ENT to tell us that information.

Now let me tell you about the remaining two hours.

Holy. Shit.

But before we get to that, let me start thirteen hours earlier:

I went to sleep at 9:30pm (my usual time) and Rachel and I both set our alarms for 4:30am (about my usual time to get up). The plan was to make lunch for the four of us, get the boys up around 5:15am (they had no idea we were going to Seattle), eat breakfast, then leave between 6:15-6:30.

At 2:30am I hear my youngest get up. I checked on him, tucked him back in bed, and then got back in bed myself--only I was pretty awake. I had slept well for five hours, so I knew that I was probably up for good.

I wasn't nervous or anxious or really had any worries that kept me awake, I was just, you know, awake. So I lied there thinking about the next few stories I wanted to write, along with the few I am currently finishing up, and just let time pass. In hindsight, I should've just gotten up to write. Instead, I kept hoping I'd get another 30 minutes or so of sleep. Yeah, I knew better.

A little while later I hear, "Daddy."

It was my youngest.

I get out of bed and see it's now 4:00am. He hadn't gotten back to sleep either.

I'm thinking there's not much that can be done; he'll have to muscle through the day we're getting ready to have.

Then I was so very thankful it wasn't my oldest that had interrupted sleep. That would have been a nightmare.

So I tuck him back in bed again and go back to my room. As I'm getting in bed I hear Rachel say, "Is he ok?"

"Yeah," I answer. "He and I have just been up since 2:30."

"Jesus," she whispers.

I don't think he had anything to with it.

At 4:30 the alarms go off. We get up, make lunch, get the boys up, watch The Three Stooges and Bugs Bunny while eating breakfast, then leave at 6:20.

So far, so good.

The drive and ferry ride were fine--we even made such good time we got an earlier ferry than the one we were aiming for--and we get to the city with plenty of time before the appointment.

I really didn't want to take my kids to this appointment. For one, if I the pathology report was not in my favor then I certainly didn't want to deal with their shit on the way home. For two, I didn't want to deal with their shit, period. These trips are already stressful as it is. They aren't quick little jaunts down to the local medical facility like it is in big cities--no, this is an all day event.

But we decided to go ahead and take them. (I do thank Stacie for offering to watch them, though. You rock.)

The doctor's office called the day before and asked if I could check-in about thirty minutes earlier than my scheduled time. Due to the procedure she was doing, she wanted to make sure she had enough time to get everything done.

So a little before 10:00am I check-in while Rachel got the boys setup in the lobby and on their iPhones. They hadn't played games in a long time so they were pretty excited.

Then the nurse called me back.

I don't know if any of you have had a scope down your throat before, but here's basically how that goes: they spray both nostrils with some numbing spray, then run a camera up your nose and down the back of your throat.

I've had this done several times and when it's done correctly it's not bad at all. It's pretty cool, actually, because they are getting video of the vocal chords and the surrounding area.

Well this time the SLP comes in (I've known her a couple of years now) and sprays my nostrils. But then she also stuffs each nostril with cotton balls that are loaded with lidocaine.

That should have been my first clue this was not going to be a regular check-up/visit.

She let those cotton balls stay in my nose for something like ten minutes, then moved me into another room. A few minutes later the doctor came in and said the pathology came back and that it is papilloma (which was what she originally thought it was). It will be another week before we know the subtype.

The subtype is important because some subtypes are more prone to turn into cancer than other subtypes. Regardless of the subtype, though, I'll be monitored pretty closely. But I'll be monitored more closely if it's the I-can-turn-into-cancer-at-any-moment subtype. I'll let you know more when I do.

"Is it cancer?" I ask.

"It's not cancer," she answers.

Rachel sighs, relieved to hear the news.

There's the ten seconds

Now the lady ENT tells me what the plan for the day is.

Remember, when I told you I was tired of being rare? Well...

During surgery last week she was able to get the biopsy, but she wasn't able to get all the papilloma--well, it's more like she couldn't get much of it. This is because when I was asleep, my passageway got even narrower. On top of that, my anatomy is such that, while still in the range of "normal," it is on the challenging side to work with.

Bottom line: She wanted me awake to finish the procedure.

Um, okay.

I wouldn't be relaxed like one is when knocked out from anesthesia, so my passageway would be bigger, and I'd be able to move and help her when she needed it.

"So, we're going to numb you up pretty good," she says.

Remember, my nose is already numb from the cotton balls, and the back of my throat is a little numb from the spray the SLP used.

But wait. There's more. So much more.

She sprays the inside of my mouth with lidocaine, but the first squirt gets my lips and now they are going numb. Then she sticks a needle into the right side of my neck, injecting more lidocaine, then does the same to the left side. The left side hurt, burned actually as the needle went in and released the lidocaine. The right side didn't because it's still numb from last year's surgery to remove the tumor. I think she did two injections on each side of my neck.

Then she had me gargle some lidocaine and swallow it down, trying to numb my throat.

At this point I'm doing ok. Yeah, kind of uncomfortable to get shots in the neck, and the taste of the lidocaine was disgusting, but overall, nothing too horrible. (It bothered me more psychologically to get injections into my neck then it did physically.)

They're going to run a larger scope than I'm used to up my nose and down my throat. Ok. I don't really know what that means physically, but sure, whatever.

They give a pair of goggles to both me and Rachel, then the doctor and the SLP put their goggles on, (and I assume the laser technician and the transcriber did, as well) for eye-protection from the laser.

I, of course, have had my eyes closed ever since she said she was going to inject my neck with lidocaine. I didn't really open them until the procedure was finally finished.

She inserts the scope into my right nostril and it hurts. It's like pressure only with this uncomfortable grinding feeling that I would rather do without.

"Ok," she says. "More lidocaine." She pulls the scope out, then sprays my nostrils again.

On the second attempt she got further but I could feel the scope on the back of my throat. I have a very sensitive gag reflex and so I started, you know, gagging. We gave it a minute to see if it would pass, but of course it doesn't. Every time she went to extend the laser portion of the scope (to get to the part she needed to laser off), I would gag.

She pulls the scope out again, then injects each side of my neck with more lidocaine. Then she says, "I'm going to inject some into your throat and it's going to cause you to cough."

Wait! What?

She injects a needle through the middle of my neck and directly into my throat. I feel the lidocaine puddling in my throat and sure enough, I begin to cough.

Holy shit! She just put a needle through my neck and into my throat!

I'm trying not to let that thought overpower me as she gives me more lidocaine to gargle and swallow.

Attempt three: she inserts the scope again and it still kind of hurts as it passes through my nostril, but not enough for me to say anything. I'm reaching the point that I want this shit done, and I don't want to prolong it and go through more of the numbing procedure if I can help it.

"You're doing great, Randy," I hear the SLP say. She is on my left side while the doctor is on my right.

I think there's a screen behind me where the video is displayed, allowing the doctor to see what she's doing. I wonder if Rachel is watching it.

I hear the technician say, "We're ready," or something like that. Then I hear a buzzing sound and can slightly feel the laser cutting away.

"Breathe through your nose," the SLP says. She's rubbing my left arm.

"You're doing great," the doctor says; and I feel like I am.

But then I feel it.

I feel it burning me.

Sharp, concentrated burning as the papilloma are incinerated.

Then I smell it.

The smell of burning flesh.

Of my burning flesh.

I don't panic, but I flinch.

She stops.

"I can feel it," I say.

She pulls the scope out and we go through more of the numbing process. When she injects more lidocaine directly into my throat, I don't cough as much. This is good because it means I can't feel it; that my throat is getting numb. "Not as much coughing, this time," she says to the SLP. Then more neck injections.

There's some joking between all of us about how sensitive I am, and about how much lidocaine I need.

But it is what it is. And she is oh so patient with me.

I shake my head and whisper, "Shit." I don't know how much time has passed, but I know they've been trying to get me numb for quiet awhile now. My patience is starting to wane. I'm getting tired of going through this.

Attempt four: I still feel the scope going up my nostril and a little bit on the back of my throat, but I stay quiet. We can get this done, I think and proceed to wait for the laser to start.

The technician signals he's ready, the SLP is still rubbing my arm, and the doctor is in position. I have no idea what Rachel is doing. I want her to come up to the chair and take my hand so I can squeeze it when the doctor begins again. But I know there's not enough room. I remain quiet.

The buzzing sound.

Again I can feel it burning me, but not as bad as before. However, I can feel the scope at the back of my throat and I start to gag. We wait to see if it'll pass. It doesn't.

My eyes water. Not because I'm sad or crying, or even from frustration, but rather from squeezing them so tight for a long period of time. A tear strolls down my right cheek and I wipe it away.

This time she keeps the scope in my throat (it's in a good position) and injects more lidocaine through the front of my neck and into my throat. I'm trying to keep myself from gagging by swallowing my saliva and taking short quick breaths.

"Slow down your breathing," someone says to me. I think it was the SLP. I do, but I'm thinking I need the short quick breaths to keep from gagging. I alternate between the two breathing techniques and along with swallowing my saliva, am able to keep the gagging to a minimum.

"Shit," I repeat.

She begins the laser again.

I can't feel it on the left side of my throat but when she moves to the right side I definitely can. I flinch a little but not too bad. "You ok?" she asks.

I give her a thumbs up. I don't want her to stop. We're so close to finishing that I don't want to do anything to interrupt the process. Let's just get it finished.

My right foot shakes as I involuntarily try to comfort myself.

She begins again. Short little bursts of a buzzing sound followed by the laser doing its thing. Most of the time they were quick bursts, but there were a few longer ones--like she was sculpting wood using a chainsaw.

I feel the flesh being burned off, and I'm confident the smell permeates throughout the room. I wonder if Rachel can smell it. I will learn later that she could.

"Just about there," the SLP says. I grab her hand and squeeze, hoping I'm not hurting her.

Several minutes later the doctor says, "That looks to be all of it." Then she pulls the long-ass scope out through my nose and I try to breathe normally.

Both the doctor and the SLP step back from the chair and look at me. Out of the corner of my eye I see Rachel still sitting in the corner.

"You ok," the doctor asks again.

I slowly open my eyes for like the first time in an hour or so. Everything's blurry. My eyes are wet so I rub the tears away with a tissue. "Yeah," I answer, but not much volume came out. My voice cracked, had no pitch, and was less than a whisper. "Did you get the vocal chords, too?" I choked.

"Yep," she says, and I'm thinking: What the fuck? You just freehanded a laser over my vocal chords. There was no robot?

But I don't say anything.

Because I can't.

I am grateful neither she nor I sneezed, though. If you know what I'm saying?

Then all of a sudden this rush comes over me and I'm trying to figure out what it means and where've I've felt it before. Well...

When I was in elementary school, me and some buddies were rollerskating on our street--I must've been eleven or something. Anyway, there's like four of us, and for some reason we have a long, rusty old pipe. I have no idea where we got it, but we were skating with it down the middle of our street. For some reason it was lying in the middle of the road and we were all going to pick it up and skate with it. You know, like 10 to 11-year-old boys do.

Before I reach to pick it up, though, I see my dad at the edge of our driveway looking toward us, but I'm too far away to hear what he's saying. (I learned later he was calling me home.) In any case, I bend down to pick up the end of the pipe. But as I do, the other boys picked it up before I got my hands on it and the edge of the pipe clocked me in the right eye. I immediately reached for my eye with both hands and started skating home--as fast as I could--screaming. At one point, I pulled my hands away from my face and all I could see was blood. Everywhere. Covering my hands, running down my arms. I panicked. I remember thinking that's it, I just lost my eye.

My parents took me to the emergency room and I remember the doctor saying something like had I been hit a couple of millimeters lower then I would definitely have lost my eye. He stitched me up and we went home.

A few weeks later my mom took me to our family doctor to get the stitches out. I sat there dutifully still while he plucked each stitch out one-by-one, though I felt each tug on my eyelid. When he finished, I was standing next to my mom on the little cushioned bench that was in the room while she talked with him.

Then I felt weird. I got all hot and clammy--like life was just draining out of me.

All of a sudden the doctor grabbed me and immediately turned me upside down. He held me that way for a few minutes.

I was too young to know what was happening or to state what I needed; but the doctor knew. I was about to faint.

I look up at the Lady ENT and say through a cracked voice, "I'm going to throw up."

She quickly gets a bedpan and hands it to me.

A minute later I say, "I need to lay down."

I can feel it. I'm going to faint. It's the same feeling I had when I was eleven years old, only this time I knew what it meant. My stomach was churning and doing flip-flops, and it felt like my blood was draining through my feet and onto the floor.

The doctor immediately lowers the back of the chair I'm in. I start to squirm, trying to get comfortable--trying to not puke.

The room's hot. The SLP gets a cool, wet washcloth and places it on my head. She then puts ice on my chest. A nurse opens both doors to circulate the air.

I feel horrible. I just want to crawl inside a hole somewhere--anywhere but here--and just let time pass.

I'm given the room for however long I need, so I stay put. Rachel checks the boys (I think this might be the second time she's gone out to the lobby to check on them) and then comes back into the room.

After awhile I start to feel better. The doctor and SLP check on me several times and state that color is returning to my face. I no longer feel like I'm going to throw up.

Rachel helps me stand and we go to get the boys.

Two hours after I initially checked-in, I was finished, and we were headed home.

When it was looking like the boys were going to have to come with us on this trip, I made the suggestion one night to Rachel that maybe I should go alone and she stay home with the boys. (I had no idea what this visit would entail. I thought it was just a quick follow-up where the doctor would be taking a little bit of papilloma off. I mean, she wasn't putting me under, so of course I could drive myself.)

Rachel didn't like that suggestion, and quite frankly, I didn't want to go alone. I wanted her with me. Every visit to the doctor is nerve-wracking these days because at any time one of us could get the news we fear the most.

So I am very grateful I didn't go alone.

She drove home and I slept. The boys did pretty well through the whole thing. They do surprise me once in a while.

I asked the doctor about speaking. It was very difficult to get that out, so I knew I wouldn't be able to really speak for awhile. This was a much different feeling than I had after surgery. I could talk fine after surgery; more evidence that she was unable to get much papilloma off during that time.

So I'm not talking. Well, not much, anyway. No whispering. No forcing my voice out. I am to let my body tell me what it can do.

My follow-up is in three to four weeks. Hopefully, I'll be talking better by then.

The whole experience absolutely sucked, and I hope all of you are spared from having to go through something similar. Through it all, my wife, kids, the SLP, and the lady ENT were fantastic. I appreciate them beyond words.

Well that's about it. I'll let you know about the subtypes after I know something.

Until next time, my friends.

Take care.

Of Course

I awoke to the sound of someone saying "Wake up, Mr. Anderson. You're in recovery."

It was the nurse.

Everything was black. I couldn't see a thing, but I could still hear her; like the lamp in the movie projector burned out but the soundtrack was still playing.

The audio track continued: "Wake up, Mr. Anderson. They had to stop the procedure. You're in recovery."

Wait. What?

The lights finally came on; bright hospital lights. Everything white.

"They were unable to complete the procedure," she said again.

My head spun, the fogginess of the anesthesia clouded every sensation.

I sat there and stared at the curtain, the fabric wall that separated me from the hustle of the medical staff.

Numb.

As you may recall, my last surgery had to be aborted, as well. That's the last two surgeries--two routine, out-patient procedures--that had to brought to an end shortly after they began.

A few minutes later Rachel walks in.

What's there to say?

My mind was still in a fog, so I honestly don't remember if I said anything to her or not.

I didn't have a seizure.

Well, that's good.

The doctor visited with Rachel for quite some time after she called the surgery off, while I was in recovery.

I'm frustrated, but unlike last time, I am not raging with anger. I'm not yelling at the nurses or cursing to relieve my frustration. Instead, I just sit there. Staring.

It's surreal. I almost fall into a self-pity party because really, can't anything just go as fucking planned?

The doctor joins us a few minutes later.

She has terrific bedside manner. She's compassionate, concerned, and attentive--three reasons I have been seeing her the past couple of years. When she emerges from behind the cloth wall, I see the sympathy in her eyes, she seems just as frustrated as I am.

Bottom line: I have a very narrow passageway from my mouth to my vocal chords--and it needs to be straight. Mine, of course, isn't. There is also still quite a bit of swelling from the radiation treatments which makes the passageway even smaller.

So she couldn't get a scope down my throat--she didn't have one small enough. It's the second time in her twenty year career to see such a thing.

Of course. Of course, it would be me. I'm already in the 2% club for having a congenital bicuspid aortic valve; I'm one of the rare ones that has gotten staph endocarditis (and of the much rarer ones that have survived it--ok, that's like really good); and I've battled stage four tonsil cancer, which apparently the treatment helped screw up this procedure (though I think it would have been aborted anyway, even if there was no swelling from the radiation). I'm tired of being rare.

Ok. That's it. That's my fucking pity party. I'm done.

So, she couldn't remove the warts.

No removal. No biopsy. Nothing.

She gave us four options. The only one I'm going to tell you about is the one I'm doing next: we're trying again. She's going to get a smaller scope, probably one for a child, and we're going back to try this shit again.

Yeah, I'm pissed off about it. Yeah, I'm frustrated, disappointed, and sometimes sad.

But it is what it is.

If the next time doesn't work, then we'll go from there. I still have three more options, remember. But as some of you know, when you get down to the last few options, well, they all kind of suck, if not just completely outright suck. Here's to hoping we don't have to keep going through them.

So that's the latest. Thank you all for everything, Rachel and I appreciate all the love and support.

I'll let you know what happens next.

(No jokes about my small passageway.)

Are You Scared?

After the beauty of an intimate encounter, she rested her head on my chest and draped her arm across my body. "Are you scared?" she asked.

"Not yet," I replied.

But I am.

Not of the possibility cancer has returned or if I'll have to go through all that pain and suffering again, which was, of course, the question she was asking, so no, I didn't keep the truth from her.

But I'm scared of other things.

Things like you and the boys not having health insurance if I die.

That shit keeps me awake on some nights.

I don't understand a world where people think, no, make that where people actually believe that such a situation is the way it is supposed to be; that healthcare is a privilege for the few and not a human right for all.

I don't understand people who are fine with their tax dollars going to the military, or some undisclosed, secret governmental organization, for the purpose of killing other human beings, but are so against those tax dollars going toward the healthcare of others.

As if dealing with health issues is a choice.

"Get a job that has health insurance," some say.

"Healthcare should not be a for-profit business," I respond.

But it falls on deaf ears.

It falls on those with no empathy for others.

It falls on those with only selfish motivations.

Mostly, it falls on those of privilege.

Almost all of my fear is health related: My cancer, your cancer, his seizures and other ailments.

It's a large part of our life together but I am thankful it's you that I go through this with.

I'm also scared for our children's future. Not because of the orange asshat that is currently in office, he is just a temporary blip, but of the way a large part of the population sees our child and those like him. What does his future hold? It keeps me up some nights, as well.

For our other child, my fear stems from what the future will be like for him. What will be left for him to do to earn a living, to be productive, and to find happiness?

Most parents have this fear for their children, but there's never been 7.5 billion people on the planet before. And this number will continue to grow.

I teach mathematics. I know this growth rate is not sustainable. I know the future will have problems that we humans refuse to acknowledge today.

More of that selfish motivation.

I know most jobs will be automated. Much sooner than many of you realize. Thus, there will be more people looking for work than there are today, but there will be far fewer jobs available.

Call me paranoid.

Call me foolish or stupid or insane or any other word you want.

It will not phase me.

If you've chosen blindness, that is your right.

But it leads to more of that selfish motivation.

More of that us versus them mindset.

We need more of that "we're all in this together so let's help each other" mindset.

We're all going to die.

You're not stopping that from happening.

So instead of being selfish, we need to help one another.

We need to listen to one another.

We need to have empathy for one another.

We need to realize we are all pieces of meat, made of stardust, riding this very small blue orb around a much larger orb in an average spiral galaxy through the vastness of space.

That's not hopelessness.

That's reality.

And that's why each of us are no better than anyone else on this planet regardless of money, occupation, or social status.

We really are all equal in the eyes of the universe.

It's unfortunate human nature doesn't let us see it that way.

But we are.

The truth doesn't need your approval.

It's doubtful you'll live approximately 2.5 billion seconds without any health issues. (That's around 75 years.)

And so our health matters.

Healthcare is a right.

Not "access" to healthcare.

That's bullshit.

We deserve actual healthcare, paid for with our tax dollars, as well as the knowledge that we will not lose everything we own when we get sick.

Everyone knows it.

It's not a secret.

Life is better than death.

Where We Go Now

It's been a year since I wrote Don't Count Me Out, Yet. A year since my world changed after I was given my tonsil cancer diagnosis; a cancer caused by one of two cancer-causing strains of HPV. A rough year, indeed, with many dark moments where I didn't think I'd make it through. But here I am, one year later.

While there were many difficult days, I remember one particular morning when I stumbled into the kitchen, barely hanging on to whatever humanity I still had, frustrated by what I was going through, and in complete misery from the pain in my mouth and neck, and I said to my wife, "If this doesn't work, or if this shit comes back, then that's it. I'm not going through this shit again."

For those of you that know my wife, you can guess how she responded. For those of you that don't know my wife, well, let's just say that's not what she wanted to hear.

But I was suffering, the worst suffering I had ever endured in my, up to that point, forty-eight trips around the sun. I wanted it to end. I can not describe to you, to help you understand, what it's like to go through such an event. If you haven't experienced it, and I hope you never have to, or if you haven't experienced something similar, then you just simply can not understand. That is no fault of your own, it's just the way it is. Life is funny that way.

Obviously things got better. Yes, it still hurts to eat and swallow, and some food is more difficult to eat than others, but for the most part I've recovered nicely. Well, except for the part where sweet things taste different now, especially chocolate. Yeah, that sucks.

I'll continue to be monitored with blood draws and scans and whatnot for quite awhile. That's fine. I'd like to catch it early if it does decide to come back again and rear it's ugly head in a second attempt to try and take me down.

And today I can't say what I said to my wife on that ugly morning last fall. If that shit does come back, then we'll deal with it again. If that means going through all that suffering again, then so be it. Life is only for the living.

I have more living to do.

So, since that is all under control at the moment, it is time to again deal with my voice. For those of you who have been around me for the past several years, you've noticed my voice has gotten worse. It's getting even more difficult to talk, today. No, this was not related to the cancer treatment I received, it was it's own separate thing.

I was seeing an ENT for the voice issue when that had to be put on the back burner because the cancer thing came up. You know, staying alive became more important than being able to speak. Priorities and all.

Well, now I'm back at the voice.

I saw the same ENT this week and, well, let's just get right to it: I'm going to have surgery.

Yes, this is frightening because, as you recall, the last time I went in for a quick surgery (to put in a chemo port), I had a seizure on the table and the procedure was aborted. No chemo port. Then, no driving for six months. I don't want that shit to happen again, so the ENT recommended I see my neurologist before having surgery. Ugh. More doctor visits.

I'm having surgery because all around my vocal chords, including on them, there is papilloma; small wart like things that are caused by, you guessed it, HPV. We won't know if it's from the same strain as the one that caused my cancer until after the biopsy, so, yes, there is a concern they may be malignant.

However, I recently had a PET Scan that was clear of cancer, so I'm thinking there's a good chance it's benign. That doesn't mean it can't, or won't become malignant at some point, though. But I can't worry about that now because I don't know what to worry about. Let's see what happens after surgery.

The surgery will happen near the end of June and I will not be allowed to talk for something like ten days. Ten days? With my kids? I'm going to need to go away to a secluded island for that to happen.

Hmmmmm. That doesn't sound too bad.

In any case, this is where we go now.

It is what it is.

We'll get through it.

I'd like you to know that HPV can cause all kinds of other problems that are not cancer. In fact, of the many different HPV strains, something around 100 of them, only two of them cause cancer. But there are other high risk strains that may cause other serious issues. So with that in mind, my PSA is as follows:

Since my diagnosis a year ago I have been an advocate for kids and young adults to get the HPV vaccine. I have little tolerance for the anti-vaccination crowd. If you're in that group, go ahead and let fear run your life, but Autism is not caused by vaccinations. In fact, you're probably alive today because you were vaccinated as a kid. Be thankful we have such medical technology today that allows us to live healthier lives than in years past.

Get your kids vaccinated.

And if you're a young adult that is already sexually active, talk with your doctor. It might still be worth it for you to get the vaccination.

There's the update. Not the best news, but not the worst either. I'll keep you posted. For now, though, I'm trying to get what I can taken care of before Congress allows my health insurance company to put an annual or lifetime cap on what they'll pay out regarding my medical treatment.

You shouldn't allow that to happen.

You may be fine now, but you don't know what your future holds.

Until next time. Take care.

The Long and Winding Road

I had a CT Scan a few weeks ago that looked good.

Today I learned the results of the Pet Scan I had recently.

I'm cancer free.

Obviously I'm thrilled to get this news.

Both the blood work and the scan looked good. I'll do it all again in three months.

I'm "probably cured" but I know cancer can return, or show up somewhere else, at any time. We just never know what lies in our future.

I'll be getting tested every three months for quite awhile, and there will always be that concern/worry of it returning or appearing somewhere else in/on my body.

It is what it is.

I'm grateful for the doctors, the treatment, and the science that helped me stay alive.

I'm very thankful for all my friends and family that helped during this most difficult time in my life. Your support, both physically and/or emotionally, was much appreciated.

Thank you.

I thank my wife for keeping the house together, taking care of the boys, driving me everywhere, and for pretty much everything else during these past months.

I love you.

I took the title for this post from one of my favorite Beatle's songs because yes, this road has been long, winding, and littered with pot holes. It's been the most difficult road I've ever traveled:

The no eating; the no sleeping; the pain; the vomiting; the nausea; the depression; the apathy; the chemotherapy; the radiation; the countless doctor's appointments; the surgeries; the seizure; the no driving for six months; the lying in bed for weeks; the lost weight; the exhaustion; the nurses visits; the PICC line; the G-Tube; the scars (both physically and mentally).

A road I hope none of you ever have to travel.

For Where I Am

On this eve of my 48th Thanksgiving, I'm thankful for where I am.

I have a pet scan next week. Yes, I'm a little nervous about it. Not the scan but more getting the results of the scan which I'll get a couple of days later. I'll probably get more nervous/anxious as that day gets closer.

For me anyway, now that I've been fighting cancer, every new "pain", every new blemish on my skin, everything that is new/different from the day before (both inside and on my body) causes me some anxiety.

It is what it is.

It's to be expected.

My tongue is feeling a little better. It doesn't hurt quite as much as it used to, though it does still hurt to eat. It even hurts when I yawn.

My neck is still pretty tight and tender, though even that has gotten somewhat better. I'm seeing a physical therapist for neck lymphedema massage exercises. Don't want lymphedema, now.

I still get tired pretty easily. Not much stamina to be on my feet for hours, but it's getting better. Last week I was up at campus for two days in a row. I was really tired during the second day. That's all new to me. Not used to being so tired from just being on campus, and not used to sucking air after climbing only three flights of stairs. That's what I climb to get to my office. That all should get better once they again become part of my daily routine. If all goes well with the pet scan next week, then that routine starts at the beginning of January. If the pet scan does not go well, then, we'll see where that leads.

This adventure has been long and, as you know, it has been extremely difficult. I don't know if it is ever truly "over" because there will always be that worry of recurrence or something new showing up during one of the many scans and blood draws that lie in my future.

But for now I'm thankful for where I am.

I'm thankful I made it through most of the chemo and all the radiation treatments.

I'm thankful for my wife helping me through such a difficult time in my/our life and for taking care of the boys when I couldn't get out of bed for weeks. It was very difficult on her, especially since she is still recovering from her bout with breast cancer last year. (Fucking cancer. We've had enough already.)

I'm thankful for the support of my family and friends. It is much appreciated. The texts, the messages, the gifts, the love. You all are wonderful.

I don't miss the days of pacing in my bedroom, literally just ten steps each way, over and over again to get some form of exercise but really just to pass the time.

I don't miss sitting in bed staring at the dresser for weeks. No music. No reading. No watching videos. Just staring at the dresser, suffering through depression.

I don't miss getting around 2-3 hours of sleep every day. If I was lucky I got 4 hours. I had to put a "can" in the tube every three hours or so. That included in the middle of the night. So while that interrupted any sleep I might have been getting, the bigger issue was that I just couldn't get to sleep. For months I had to sleep sitting in an upright position, which forced my wife to sleep in a different bed. I was often stuffy and couldn't breathe through my nose. My throat, tongue, and neck hurt. Badly. And the medication I was on caused insomnia.

Nope. Not gonna miss that.

And I hope I don't have to go through that shit again.

Ever.

I don't miss having tubes sticking out of my body. I'm reminded of them every time I look in the mirror without a shirt on. The scars are a reminder of the Hell I went through.

But I'm thankful I have the scars.

For without the tubes I would've died weeks ago.

Without the scar on my neck, the cancer would've spread even further than it did.

And even though I'm scared shitless, I'm thankful I'm getting a scan next week. I refuse to bury my head in the sand and pretend everything is ok.

It's not ok.

I have cancer.

Stage-four cancer.

It may be gone now that I've gone through surgery and treatment.

But it may not be.

I need to know.

But for now I celebrate.

I celebrate with my family and friends.

We all have problems. For some it's health related, for others it might be financial, or with their relationships or employment or a myriad of other things that can go wrong in our lives. It saddens me to see such hatred still propagated throughout this country and throughout the world when all most of us are trying to do is to just live a happy life despite all these things that can go wrong.

Life is shorter than we can ever imagine.

Unless we've faced the real possibility of death, we don't really know how short.

Be kind.

Oppose hatred.

And live life to the fullest.

I'll update you next week when I get the results of the scan. I hope it goes well and the cancer is gone.

Regardless of the outcome, though, I am thankful for where I am today.

Take care.

We Keep Moving Forward

I'm better now, but I had to make it through some very, very dark days.

Well, it's been awhile since I last posted. I just couldn't bring myself to write during the past month or so. For most of that time I didn't do much of anything. No reading, no watching movies/tv. I didn't even listen to music for quite awhile. I just sat in bed for many hours a day. For the first time in my life, I was suffering from depression.

It was awful.

There were some very dark days, days where I didn't think I could go on. Days where I didn't really want to go on. I couldn't eat, I felt horrible, I was still vomiting. I would lay in front of the toilet because the floor felt good and, well, I was close to the toilet. It was truly a horrible time in my life.

I think the main culprit may have been oxycodone. I took it for nine days about every two hours. That's a lot. But I thought I needed it because my throat hurt and while I was taking the oxycodone my throat wasn't hurting.

Then I had to go to the emergency room.

My g-tube was leaking more than usual, and it was a little loose. One of my closest friends came to visit me the day before I had to go the ER, and she and her partner, along with a friend that works at the hospital, stayed with me while I was there.

But I was like a zombie. Not a Night of the Living Dead or The Walking Dead zombie, no, I was apathetic, lethargic, and fairly unresponsive to those around me.

I didn't know it at the time, but it was because of the oxycodone.

We waited for quite awhile before I was called back, so it had been several hours since I had "eaten" (put a can in the tube) or taken oxycodone. Two things I thought I needed to do every couple of hours or so in order to survive. Well now it had been something like five hours and I wasn't really hungry, though I knew I needed to "eat", plus my throat wasn't hurting.

But wait, I need oxycodone to make sure my throat doesn't hurt?

Apparently, I didn't.

So I decided to stop taking oxycodone. Cold turkey.

I didn't know it at the time, but that might have been a mistake.

The next week, particularly the next four days, was the most difficult time of my life so far. Depression, vomiting, apathy ruled over me. I was lethargic and just stayed in bed or by the toilet. It was truly a horrible time.

It was also the first time in my life I had ever thought about suicide.

But I thought about it.

I wanted out.

I wanted my wife and kids to be free of the shit life I all of a sudden had.

I didn't think I'd ever be able to eat real food again.

I was terrified of my life.

If this was going to be the quality of my life then I didn't want any part of it.

So yes, I contemplated suicide. I had it all planned out. I even went as far as writing a letter to my wife for her to read when she found me.

I was planning on doing that on Friday, four days after the ER visit. She had gone to Costco and was headed to pick up the boys from school. I thought this is my time.

Then she spontaneously showed up at the house to drop off the frozen food before going to pick up the boys from school.

She was planning on taking the boys to get ice cream and asked if I wanted to join them.

Up to this point about the only time I had been out of the house was to go to the fucking cancer center or hospital. I guess I was going stir crazy, as well.

I said I'd love to join them and then put my shoes on.

I don't know if I really would have gone through with it or not, but I credit that moment with turning me around. While it has still been rough, I haven't thought about suicide since.

Today, there is no way in Hell I would contemplate it. That's not an option.

I really think the oxycodone was doing a number on my head. I was going through withdrawal. It took a few more days before I figured that out.

Oh yeah, we had a good time getting ice cream, though I didn't get any. Wasn't ready, yet.

Then the tube started leaking again and again became loose. At my next appointment with the oncologist I showed her. She thought it was infected and took a culture. Then she scheduled me to meet with the surgeon that Rachel and I like. The same one that took the tumor out of Rachel's breast last  year.

When I went to the ER, the ER doctor didn't have any experience with g-tubes but this surgeon happened to be working next door so he went and got her. She came over and fixed the tube from leaking, did a McGyver she called it, but it worked. She's awesome.

The culture came back negative but I kept my appointment with the surgeon.

A week or so later I had some ice cream at home. It was the first solid food I ate. I was terrified it would come back up, but it didn't. It wasn't much, and it hurt to swallow, but I ate it and it stayed down.

I slowly tried to eat other things over the next week but it was quite difficult. Plus, I didn't really have an appetite. I had way too much anxiety about eating. It scared the shit out of me.

But I continued.

Then I got to a point where I was eating solid food more than using the cans and the tube. I would use the tube during the night and eat solid food during the day.

Then came time to meet with the surgeon.

She came in and said that my oncologist thinks that she should take the tube out.

I was terrified. This was what had kept me alive for the past two months. It was difficult to think of not having it. I wasn't really eating terrifically and I was very worried about the middle of the night.

With a little peer pressure from the surgeon and my wife, I laid down on the table and she took the tube out. My anxiety was sky high.

Later we picked the boys up after school, and to celebrate me getting my tube out we went and got ice cream. I had a scoop and ate it all. I was very pleased.

Since then, I have been eating more. Peanut butter and jelly sandwiches and pasta are still pretty difficult to eat, but chicken, mashed potatoes and gravy, turkey sandwiches, scrambled eggs and pancakes are not.

I started seeing a therapist, because, well, this hasn't been the easiest trip for me. The first day we met we talked about food. I told her I didn't like yogurt but I thought it was something I could eat. She scheduled to meet with me again two days later and I was to bring two yogurts.

So two days later I met with her. I had a vanilla yogurt and a strawberry yogurt. I sat there in that room with her and ate the strawberry yogurt. It took 25 minutes. At the end I told her I was just tolerating eating it. That of course is ok, as long as I eat it.

After I finished she wanted me to try the vanilla just to see if I liked it better. I did, and now I eat at least one vanilla yogurt a day. I actually look forward to eating it. This is a major change in my eating habits.

So eating has gotten better. I've eaten a lot of chicken and mashed potatoes and gravy. Turkey sandwiches are slowly becoming a staple again. I'm even able to eat chips and hummus. Next is tacos!

Eating real food again has made me feel better and stronger. I'm out of bed more and interacting with my family and trying to help around the house. Every day I get a little bit closer to my normal. I am very thankful for that.

This past Monday we went to a restaurant for the first time since May. I didn't know how much of the two enchiladas, beans, and rice I could eat, but I was going to try.

I ended up eating all of it. That surprised me. And I wasn't feeling stuffed afterward. I guess my stomach is stretching back to its normal size.

While I'm still 30 pounds less then when this whole thing started back in May, I think I'll be able to gain some weight now. The cans and the tube just weren't cutting it.

I had a CT scan this past Monday that I'm a little nervous about. I get the results in a week. I am hoping I'm all clear.

So that's the update. Sorry it took so long, but I thank you for understanding. Things are much better now and I am mentally in a much better place than I was.

We keep moving forward.

I Just Want To Heal

One thing is pretty sure: If I wouldn't have gotten then g-tube then there's a good chance I might not have made it. That's worst case scenario. Best case is that I would've missed some treatments. All of that is bad so I'm glad I went ahead and got the tube.

Yeah it's annoying as all Hell, but it's keeping me alive.

The worst thing right now, though, is the constant dry mouth. It's bad. Absolutely no saliva. That is difficult to deal with. When my mouth dries out then it hurts to swallow water. I try to drink water a lot in order to help, but it's right back to dry mouth. As dry as the desert.

Chemo has caused most of this but I'm sure radiation has contributed to it, as well. I just want a moist a mouth again. Looks like that'll be awhile.

So yes, I managed to get through 33 radiation treatments. That's quite a lot. About seven weeks. Glad it's over but still have to deal with side effects for a few more weeks. That is getting more difficult.

I'm restless but tired all the time. I just want to heal.

Back to patience.

That's getting more difficult to do: be patient.

Yesterday my doc and I decided we'd stop chemo treatments. So I'm finished with chemo and radiation. Now it's on to healing.

The chemo was not systemic treatment, it was to help radiation do it's thing. I asked her if she was worried about me stopping and she said no. That's good.

It looks like healing will be difficult. That is disappointing. You don't realize how much you take your mouth for granted until it's not functioning the way it is supposed. It feels like it did after surgery, hurts in the same spots, but it seems more intense. Maybe it's my imagination, who knows. I did eat a little bit of real food last night, not much mind you, but I did. It's definitely more dry than after surgery and that makes a big deal. I need saliva. Maybe start feeling better next week? Who knows? Everyone is different.

It does affect my sleep. Hard to sleep with dry mouth and then wake up, drink water, and hurt to swallow. Doesn't make me want to go to sleep. Some nights are better than others. Most nights suck badly.

So that's it. Pain, dry mouth, treatments complete, more pain.

Please start healing. Please feel better soon. Please.

One Job

I used to have several jobs. I still do, but almost all of them have been relegated to the backseat because now my main job, the most important one, is to get calories in my body.

And that is a job.

Seems easy enough, right? Just eat.

Well it's not quite that easy. As you know, I can't really put food in my mouth with that whole going to make me throw up thing still going on. Although, let me say a few days ago I did walk in to the kitchen and Rachel had a Costco rotisserie chicken on the island, that Nathan had already devoured the two legs from, and I said I'll take some chicken. And for whatever reason, I could eat a little chicken on that particular day. That's been the extent though. And no, it didn't taste the way it should. So, in general, I still can't really eat food. Instead it's those "cans" of nutrition that I pour down my tube.

Several times a day.

This is the "job" part. It's what I have to do. It needs to be done. And it is annoying.

About every two and a half hours I have to get a can down the tube. Thus, I feel like I'm always pouring these cans into my stomach. "Didn't I just do this?" I ask a lot. And, yes, I did just do it, 2.5 hours ago.

That's not a lot of time between "meals".

It makes it difficult to leave the house because I can't be gone very long. Oh, I guess I could pour a can in out in public, but you know I'm not going to do that. Now I have it down to a routine and changing that routine would be a pain in the ass. Plus, no one wants to see me pour liquid into my tube while we're sitting at the local cafe. Not to mention that because of chemo I'm highly susceptible to catching a disease or something minor.

So forget it. I'm feeding at home.

This will affect my teaching job which starts in about a month. I'm trying to figure out how to handle that situation. A buddy of mine and I have a couple of good ideas. We'll see what plays out over the next couple weeks.

I need these calories. It's what my body uses to repair all this damage that is being done to it from the radiation and chemo. It's working, it's just such a pain in the ass to have to put a can in so often. That's really what I'm complaining about, here: the frequency.

I know it won't last for ever, and it's helping me get stronger every day.

But it is a job.

Not a job I enjoy, but it is what it is. I'll get the job done. I'll just be glad when I no longer have the tube and food hopefully tastes like it's supposed again.

Oh yeah, and I'll be glad when the radiation and chemo have eliminated my body of this cancer that I've been fighting.

Yeah, I'll be glad about that for sure.

Then this entire job will be completely worth all this effort.

Odds and Ends

We're finally down to single digits of radiation treatment left. Still have a long way to go, but it's nice to know I only have a few more treatments remaining.

My mouth is swollen and sunburned inside. If it gets too dry then it hurts to swallow water. I try to keep in moist. The tube feeds are going as well as can be expected. I mean, I'm just putting in calories along with everything else these things have that my body needs. I've been maintaining my weight. I think that's good. We'll see what the doctors say this week.

I have four more chemo treatments. Not looking forward to those. They wipe me out. Nausea has gotten somewhat better. I hope it stays that way or gets even better. I think the "feedings" have helped in that regard.

The constipation is better. Almost feel normal in that regard, but still pretty cautious.

Still don't want food in my mouth. Still trying to come to terms with smells. I want to be able to smell food without having to rush out of the room.

Patience.

The boys wear me out. I can't really stay in the same room with them for very long before I need to seek seclusion from the chaos.

The chemo makes my nose get very dry, but the bigger issue is that it has wiped out any libido that I had. It's just gone. Side effect, I guess. At least for me. It's fine anyway, may not be fine with Rachel, but I don't have the energy for such activities anyway. It should return at a later date. At least I hope it does.

So I'm kind of in a staying pattern at the moment. Which is certainly better than the free-fall I was in earlier.

I do have a lot of work to do for my classes. It'll get done. Somehow. This is the last week of Summer Quarter so luckily that's about over.

In any case, this is just a quick update. I hope you all are doing well.

I'm doing the best I can do at the moment. I'll let you know if things change.

Eclipse

There is a light.

It's dim.

I can barely see it.

But it's there.

I know it's there.

And it'll get brighter each day.

But I'm not here to talk about that particular light today.

Instead, I need to talk about the dark days.

When I started journaling my cancer adventure, I made a promise to myself to always be honest in my writing. To tell my story truthfully, whatever that may entail. No matter how ugly this adventure may get, I intend to keep that promise.

This is the hardest fucking thing I've ever had to go through. I hate it. I hate the constant disgusting taste in my mouth. I hate that I can't eat real food and have to feed myself through a god damn tube. Smells, and even food in my mouth, make me vomit. I don't like to ride in the car because it can make me nauseous. It's just all shit and I hate it.

I'm constantly exhausted and spend a lot of time in bed. Part of that is probably related to my energy level, part from the actual treatment.

And the fucking treatment. Holy shit, the fucking treatment. It's one of the more rigorous treatments they give people. And it is brutal. It's brutal physically, mentally, and emotionally.

And all three are taking a toll on me.

Physically I don't look too bad. That's good. My neck looks pretty good but the inside of my mouth is very uncomfortable. I'm still expecting the pain inside to increase soon, though. As of today, I have 13 more radiation treatments. They get a little harder to do each time.

We received the "cans" of "food" a few days ago. This is the food that goes into my tube. I'm supposed to have 6-8 cans a day. Well, that didn't work. They don't keep me satiated very long, maybe two hours. Then, if I get too hungry, I get nauseous and have to run to the toilet and throw up. Yeah, fun times.

So I've changed to having a can about every 2-2.5 hours. At that rate, I'm having like 11 or 12 cans a day. And this shit is disgusting. It smells disgusting and tastes disgusting. I didn't think you were drinking it, you say. That is correct. But I've thrown it up. It's disgusting.

Mentally I am drained. Your whole job is to stay alive. That's a lot more mentally exhausting than you might imagine. I mean we do it every day, right? We try to stay alive. But this is different. This is taxing. A tremendous amount of effort is required because all your energy is being zapped away by the treatment.

But you have two options (at least I have two options), either dig deep and get through it, or die. There is not a gray area. This one is completely black and white. And even though the treatment they are putting me through has a good success rate, it is not 100%. So I must dig deep just to give myself a fairly decent chance of surviving. A fairly decent chance is better than no chance at all.

Emotionally I am a wreck. Lately I've been crying a lot. Mainly over how difficult this is on me. I know it sounds like a self-pity party, but that's not it. It's just so overwhelming. All of it. There's never a break because you're constantly battling something whether it be nausea, food, or even sleep.

And I burst into tears every single time I learn of someone, particularly someone I know but it doesn't have to be, who has just been diagnosed with cancer. It breaks my heart.

One of my dearest friends texted me the other day and I took that opportunity to just vent away. She said it was good to vent. It means I'm pissed off and fighting. So, yes, I'm angry.

I'm also sad, frustrated, scared, anxious, and at times depressed.

All of that is mentally and emotionally draining.

Oh, and the anti-nausea medications cause constipation. Yeah. This is the worst constipation I have ever had in my life. I literally put on surgical gloves, dip my finger in vaseline, and break up shit in my ass just to get it out. It's excruciatingly painful. It's getting better but it's a lot of work and pain. I'm hoping the Mirilax kicks in soon.

And of course, some days are better than others. Actually, it's some moments are better than others. There is no preparation for this. They don't teach you how to deal with this shit it in school.

Fuck you, cancer.

You have fucked up my life beyond comparison. You took my dad, you tried to take my wife, and you're currently trying to take several people I know.

Stop it!

And praying does not make cancer go away. If it did, don't you think the world would be free of cancer by now? People have been praying for cancer to go away for several millennia. Well it's not gone away. It seems to be everywhere. It's not going away, either. It's here to stay because every person's cancer is slightly different. That's why there'll never be a cure: because the cancers are all slightly different for each person.

That may be a hard pill to swallow, but it's the truth.

Have no doubt, though, that treatments will get better. So while the world will never be free of cancer, the way we fight it will keep improving and just may not be so bad in the future.

When Rachel was going through her breast cancer adventure, her thing became to tell everyone to check their breasts. At least once a month. And not just women because men can get breast cancer, too. The earlier breast cancer is found, the better. And that's one cancer that can usually be found early. So check your breasts. If you don't know how to do it, then learn.

My thing is if you're in the appropriate age range, then get the HPV vaccine. Both men and women. It can give both sexes several different cancers and we have a vaccine for it. That is awesome. So find out if you're a candidate for the vaccine, and if you are then get the god damn thing. It could prevent you from having to go through the shit I'm going through.

A few days ago I wrote a new short story. It helps to write. I'll post it soon.

I took the title of this post from one of my favorite Pink Floyd songs. Actually, it's two songs combined to make one, and Eclipse is the second part. I feel like I'm in an eclipse, waiting for the sun to come back and shine it's beautiful light on me again.

It will.

And I'll be here, ready to bask in its beauty.

Battles

As parents, we learn to pick our battles with our children.

As people, we learn that sometimes we don't get to pick our battles. Many battles are forced upon us either from external or internal forces.

Battling cancer is a not a battle we choose to take on. It is forced upon us. It invades our life. Sometimes as fast as a freight train, other times as slow as a snail. Since getting cancer is rarely expected (I mean if you're smoking cigarettes then getting cancer should be expected) then when you learn you have it, it's like your head was clubbed with a two by four. It takes a long time to process everything you are being told. In many cases everything seems very urgent and things begin to move very fast. But your head is spinning with information. That's why it's very important to have someone with you when you have these doctor visits. This person should take notes (because you're really not in the frame of mind to do so) and ask questions if they have any. These supporters are our advocates. We need them. We need their strength.

Rachel's my rock. I would've floated off long ago had I not been tethered to her and her strength. She is by far the best note taker in the family. I suck at it. Badly. She has accompanied me to several of my doctor appointments and always does a fantastic job of taking notes. When she was battling breast cancer last year, she had good friends go with her and they would take copious notes. Yeah, I'm jealous of all these people who are capable of taking such good notes on the fly. I find it amazing.

If Rachel is unable to join us at the doctor visit, then we resort to using FaceTime during those appointments. So she's there. She hears the conversation and can ask pertinent questions. She's taking copious notes. (I think it's just something she really likes to do.)

Battling cancer could possibly be the most difficult thing you may have to do in your life.

In fact, it becomes your life.

Almost every thing you do revolves around your cancer and the corresponding treatment.

Literally, almost every thing you do.

Oftentimes it is overwhelming.

And while the battles between you, the mountain, the mountain lion, and the god damn bear are the main battles, more subtle ones begin to take place.

My newest battle: anxiety.

And it is achingly high.

It's prevented me from eating, has caused nausea, and even a little depression. These all become smaller, yet no less important battles that now have to be taken on. But we only have a limited amount of energy. You do the best you can. Sometimes it works. Sometimes it doesn't.

I've never had to really deal with high anxiety before, so it took awhile before I even figured out that's what was going on. It's a horrible feeling and I am trying to keep it at bay with medication and cannabis. Most of the time these work and I'll be able to eat some food. Not that the food tastes good, mind you, but at least my nausea isn't so bad at the time that I can get some food in.

Clearly I should have anxiety. I understand that. The next chemo treatment, even at 1/3 the original dosage, frightens me to no end. It's difficult to not think about this next bear attack, but it terrifies me. I can not overstate that enough. After what happened the first time, yes, I am terrified to get my next chemo treatment. So my anxiety hits the atmosphere when I think about the next one.

I think that's fairly normal. Think for a minute about what they are putting into the bloodstream. That shit is not supposed to be there, so you're body acts like it's supposed to act when a foreign body has entered. It tries to get rid of it. The anti-nausea and other medications are to trick the body into thinking this foreign body is ok and to help keep it in your body.

I guess most of the time they do a pretty good job. Unfortunately, that's not what happened in my case the first time. Here's to hoping for the best for the second time around.

Because of this battle I've been having with eating, I got a g-tube. The anxiety was high that day because what if I have seizure and they can't get the tube in? You know, all the things that can go wrong rifle through your head because you're scared shitless.

To do the procedure they needed to place an air tube up my nose, down my esophagus, and into my stomach. This allows them to blow air into my stomach so they can find it easier. Ok, that's a good thing. Wouldn't want this tube going into my liver.

Now I've had several ENTs scope my vocal chords and throat before. They use some numbing spray that works generally pretty well. The difference here is they don't use such numbing spray. Instead they use some numbing gel. And while the ENTs go to the back of my throat, this tube needed to go down my esophagus. So it has to go in at a different angle. I was told this is the part that most people have trouble with.

Ok.

I literally screamed "Fuck that hurts!" as he got the tube past the painful part. And hurt it did. Like a burning stick being shoved, and that's the word "shoved", right up my nose. God damn that hurt.

Once we got past that, things settled down and the pain disappeared. So now I'm laying on the bed. with this tube sticking out of my nose. Here's what I looked like. You might click the picture and enlarge it so you can get the full effect.

They then did a CT scan to find my stomach and mark where it was. Then they wheeled me to radiology room where they did the procedure.

I was awake for the entire thing.

Oh they had me on a couple of drugs, but I was wide awake. The worst part (after the nose incident, of course) was when they deadened my stomach. The needles hurt a bit. Once that all kicked in, though, I didn't feel any pain. I could feel pressure, but no pain. I even made a joke during the procedure, so we all got a bit of a laugh during this stressful moment.

They then wheeled me back to my recovery room where Rachel and I waited until we got discharged.

Now the nurse pulled the tube out of my nose, and yes, it hurt just as bad as it did going in. It was not a fun afternoon.

A little while later later Rachel drove us home. Literally, as soon as she parked the truck in our driveway, I began throwing up.

I threw up for the next three hours.

And oh did my stomach hurt.

And this wasn't dry heaves either. My best guess was that when they put the tube in my nose it caused my nose to bleed (there was evidence of that). I think I may have swallowed a lot of blood, and that blood was needing to come back up. It did.

It murdered my stomach muscles. I couldn't move much so I laid by the toilet for around three hours. When the nurse got there later that evening I managed to get into bed. They gave me some meds and I went to sleep. Exhausted.

I know I said earlier that I did not want a g-tube. Mainly from fear of losing the ability to swallow on my own. But now that I have the tube, and Rachel and I are figuring it all out, I have to say that I was wrong. The g-tube has been very helpful. I'm stronger today than I was just a few days ago, and I owe all that to Rachel being able to get nutrients into me. (Of course she's never allowed to tell me what she puts in her concoctions. It's best that I don't know.)

Rachel was messing around with a new app and this was the picture we liked the best. It's the g-tube.

The effects of radiation are starting to kick in, and this week could be the week they increase in intensity. Not looking forward to that.

So that's the latest. Radiation treatments 14-18, and chemo treatment #2, are all this week. Looks like I'll battling high anxiety this week. Ugh.

I'll leave for now with the following:

"We can rebuild him. We have the technology. We can make him better, stronger, faster..."

Screw that! I'm just tired of being cut into!

P.S. I wonder how many people got my reference?

This Was Not Part Of The Plan

Sometimes the pieces of your life inexplicably explode.

Most pieces land somewhere close around the edges, fairly easy to find and put back in place.

But some pieces are lost forever, leaving a hole for all eternity.

I wasn't terribly anxious about getting my first chemo treatment. After all, it wasn't that long ago that I watched Wonder Woman (My Wife) fight through her treatments, and in general she did fantastic. I used to make the joke that on chemo weeks she would be "useless" for about 4 days. It just knocked her out and the boys and I rarely saw her. But I was wrong. She wasn't useless because the could actually still do many things for herself. Sure she couldn't help with the boys (which practically made her useless to me) but in general she was still functional.

So, in kind of a bad way, I had an idea of what to "expect". I put the word expect in quotes because each cancer is different, each person reacts differently to their cancers and/or treatments, and, quite frankly, I was wrong.

Got the 4-hour chemo treatment. Then about 5:00pm I started feeling a little queasy. Not bad, just kind of uncomfortable. By the time Rachel got home from her Book Club meeting around 10:00pm or so, I was passed out (in bed asleep). No memory of her getting home. Slight memory of some quick conversation while she got ready for bed. Then nothing else.

It was like the walls of my life enclosed me, wrapping me in my own personal hell, all the while attempting to asphyxiate me.

I was going to delete the previous sentence, but I think I like it. It stays.

Anyway, the day after chemo was a living in Hell. Actually, I might have been a zombie in TWD. I would have preferred to be a zombie!

Rachel got me to my daily (the second one by this point) radiation treatment, but after I got done with that (which takes about 15 minutes total), she had amassed a team of doctors and nurses and I was being shuffled off to a room to get fluids.

Um, this was not part of today's plan.

Life with cancer.

Rachel and the boys picked me up four or so hours later and we headed home.

Now know that at no point have I actually vomited. This is all that nausea feeling that is kicking my ass.

I can eat. It all sounds disgusting. And now, the smell, sound (saying the word out loud), and even the word itself, vanilla, makes me queasy. This is painful. Part of the plan was to have vanilla milkshakes through this crap because it's my favorite flavor.

I should've known, this was not going to be part of the plan.

So vanilla is out. Can't do it at all. I hope that is not a permanent feature.

But everything I eat tastes disgusting. So much so that I often can't eat it and I have to look for something else.

I hate it.

Enough about food. It's going to make me wretch.

So after I received some fluids, for over four hours, we had the same plan we started with. Take the anti-nausea meds like clockwork.

Seems simple. I had already done what was recommended so it's not like I wasn't trying to stay ahead of the game. I even set an alarm for the middle of the night so I could continue taking my meds through the night. I was told that most people don't feel the nausea pains until day 4, and that's usually because they had not been already taking their anti-nausea meds.

My nausea began the same day I received my first dose of chemo.

And I was unable to recover.

What I've learned: I'm not "most people".

For five days I didn't get out of bed. I slept for literally 18-20 hours each freaking day. I didn't eat for days. (This of course made the whole nausea feeling worse.)

I was unable to really do much of anything for myself.

I began vomiting three days after treatment. The fourth day got worse. And the fifth day after treatment was the worst day (in terms of vomiting).

And as the days moved on, getting to the Cancer Center became more difficult for me. Riding in the truck was too much movement and caused vomiting. But I had to go.

The fourth and fifth radiation treatments, which corresponded to days 6 and 7 after my chemo treatment, I ended up vomiting while on the table to get treatment. Once after treatment was over, but once before it began, causing us to delay that day's treatment. I did end up getting radiation on that day, just a little while later.

Seven days after chemo, I was in bad shape. Again, couldn't really get out of bed except to get to radiation, and, I still haven't found any relief for my nausea. And, it's doctor day. So we meet with the radiation doctor and nurse.

Major concern is my weight loss.

Still haven't eaten anything substantial.

I lost about 10 pounds in a week. My weight gets much lower and we'll have to delay radiation. I'll be too weak.

The g-tube was discussed.

We went home.

Relatively speaking, it was the best day yet for getting food into me. (Not that I was able to get a lot into me, mind you.)

Then it all came back up around 6:00pm.

The g-tube wouldn't help my nausea.

And the nausea is what I need to stop.

Day eight after chemo:

Much worse day than the previous day. Woke up around 6:00am needing to wretch at the toilet. For over an hour. Dry heaves suck.

Got to radiation.

Got through radiation.

Met with Physician's Assistant. She was fantastic. Then met with chemo doctor.

The g-tube is again discussed.

Insertion of the g-tube is now scheduled.

It's not so much that I'm going to have a g-tube that bothers me, it's the fact that the g-tube isn't going to do anything for my nausea.

The PA writes out a plan, regarding anti-nausea, to administer after the next dose of chemo.

The next dose of chemo?

That scares the shit out of me.

The original plan was to have three doses of chemo throughout the whole thing. And these are big doses of powerful stuff. Cisplatin is famous for making people nauseous throughout its history. What's been surprising for all of us is that it hit me so fast and the anti-nausea drugs are not working.

So my nurse said we're not going to do that to you again.

And my doctor has now split those last two doses into six smaller doses. So for my next chemo treatment I'll be getting about a third of what I originally got on that first day.

That still scares the shit out of me.

A third of what I just went through, of what I am still going through, terrifies me to no end.

It was, and still is, that bad. My stomach is still in knots. I still have difficulty eating because everything tastes nasty (a side affect of chemo). I'm nauseous most of the time. I'm tired all the time. And we're 11 days out from when I had treatment. I can't feel good about having to endure only a third of that. It scares me.

Then a very good friend posted the following on Facebook:

What It's Like To Go Through Cancer Treatment

And all I can do is laugh and cry through the whole thing because it really is spot on. That is what it's like, at least for me. I'm fighting a god damn mountain lion with a bear that can only fight the lion by going through me.

So I'm getting mauled both inside and out.

The last 11 days have not been a roller coaster, there haven't been any "ups". Instead it's been a living hell. The bear just kicked my ass. I actually said to Rachel, "The chemo is killing me."

Then I went to the hospital (short stay) on the 8th day after chemo.

Doctors were very concerned about fluids. It takes 2 hours to deliver 1liter of fluids into my system. I was to get two liters that day.

The previous couple of days I began using MMJ to see if that would help with the nausea. I'm lucky and very grateful to live in a progressive state where we can do such things legally.

It worked.

At least it works when I am fully "medicated". If I'm only partially "medicated" then it doesn't work at all. So we've added this to our arsenal. Then we promptly ran out of the stuff that was actually working for me. I haven't found a replacement, yet, and so the nausea continues.

But I can tell you that I have rediscovered my love for Pink Floyd. ;-)

In any case, while in the hospital I wasn't feeling nauseous so I ordered pudding. I didn't quite finish it, there was still about an 1/8 left in the container, but when the nurse came in to see how I did eating it, I pointed at the container to show her the top 7/8 that was empty, and said "That's more than I have eaten all total in the last week."

Then I ordered lunch.

Ate half a ham, turkey, and cheese sandwich and part of a baked potato.

I began to worry that I was eating too much after going so long without eating, but everything stayed down. I actually felt pretty good.

On the tenth day after getting chemo I had someone other than Rachel take me to the Cancer Center so I could get my radiation treatment. It was the first time I felt like I could go with someone else. It went the way it was supposed to go: I get there, I lie on table, they put the mouth piece in my mouth and lock me down, they radiate me, I leave. Fifteen minutes.

Then I spent the rest of the day in bed.

That was yesterday. I'm still nauseous, probably at this point from hunger, and everything sounds like it's going to taste nasty, but at least today I am able to finish writing this entry.

So that's the update. I'm getting a g-tube soon, we're cutting the amount of chemo I'll be getting each treatment to a third of the original dosage, I'll be getting weekly chemo treatments, and oh yeah, all those side affects of radiation haven't even kicked in, yet.

Future challenges.

I'm an emotional wreck; I'm tired; I feel like shit; I feel bad for my kids; I feel bad that I can't do more for myself or my family; I cry; I sleep; I cry some more.

Then I run to the toilet to wretch.

This was certainly not part of the plan.

The Goal

"We're going for a cure."

Words I was grateful to hear.

Now that doesn't mean we'll be successful in getting that cure, but that's the goal.

And sometimes, all you need is the goal.

I'll be having thirty-three radiation treatments along with three chemo treatments. I guess the chemo they are using is pretty potent. It's really popular among those that like that nauseous feeling. (That would not be me.) They said I'll feel fine for the first three days because they give me some extremely powerful anti-nausea mediation when I get my chemo treatment, but come day four, well, that could get ugly. So, it's absolutely crucial that I take my anti-nausea medication at home. I guess some people feel so good during those first three days after treatment that they don't take the anti-nausea medication during those three days and then they really suffer come that fourth day.

We know this from experience.

Even though Rachel got different chemotherapy than what I'll be getting, she didn't take her anti-nausea medication those first few days after her first chemo treatment. Yes, she payed for it. Let's just say she learned her lesson, and I learned from watching her, and she took her anti-nausea medication correctly from then on out. The nausea situation was much better after that. She was more fatigued than nauseous.

I can live with fatigued a hell of a lot more than I can live with being nauseous. You can bet your britches I'll be taking that anti-nausea medication correctly from day one.

Then there's radiation.

Remember, radiation is the real cancer killer for my situation. The chemo treatment is to actually help the radiation work better. I lie down on the "bed", which is really a hard slab that slides back and forth in and out of, I guess I'll call it, the "radiation chamber".

After I lie down they put a personalized mouth guard in my mouth and then lock it down. This is what it looks like:

It's locked down because we don't want my head moving. Lasers are also used to pinpoint the area that is to be treated. We want to make sure the radiation is focused where it's supposed to be going every single time. It feels pretty crazy and the mouth guard tastes pretty bad, but it's remarkable we're even able to do this.

Now, one of the side effects of the radiation is that my goatee will go away because the hair will not be able to grow. So, here's what I have looked like for at least the past 15 years:

And here's what I look today:

They encouraged me to shave it off.

So there you have it.

I don't think I like it, but maybe it'll grow on me.

It's an aggressive cancer and we're fighting it aggressively with a brutal regiment of radiation and chemotherapy. It's nothing to look forward to, but it's all I've got. We all know the alternative and I'm not ready for that. So this is my shot, my attempt to rid my body of this disease.

All I can do is hope it works.

Yes, Mountains Move

Some days I feel like I can do anything. Kicking cancer's ass is of course at the top of that list, but in general I feel strong, empowered, and able to conquer any mountain that moves to block my progress.

And yes, mountains move.

Those days are great. I feel relaxed and ready to take on the world. Nothing can stop me.

Today is not one of those days.

Today I want to crawl into bed, get in the fetal position, and just cry. (And yes, real men cry.)

I got my PICC line today. It sucks. My arm hurts a little and the whole goddamn thing is just uncomfortable. I can't get it wet, so showers should be interesting. When I had a PICC line before I was so sick that I didn't give a shit about taking a shower, so they were fairly rare while I had the PICC line in. I think I may have resorted to a few quick baths. I hate baths. I'll probably have to resort to taking quick baths again. Ugh.

Here's what it looks like with the "sock" on it, you know, to help keep the end from flopping around:

And here's what it really looks like:

See those two ends on the right there? Yeah, I got a double one. Yay me.

Around 20% of all the people admitted to hospitals around the country end up getting a PICC line. That's pretty remarkable. However, I'm disappointed I'm in that 20%.

But I have to get my chemo treatments.

I have a few more lessons, blood draws, and dry runs before the actual treatments start. I'll have thirty-three radiation treatments and three chemo treatments over the next seven weeks. The chemo treatments are to help with the radiation treatments. The radiation treatments are what's going to kill the cancer.

I'm sure no one ever feels ready to begin this shit. I'm no different. I do want to start because I'm tired of waiting, I'm anxious, and the sooner I start then the sooner it'll be over.

But no, I'm not ready to begin this shit.

But it's been almost seven weeks since I had surgery to remove the tumor and lymph nodes. It will not be good if we wait much longer.

Luckily, the wait is almost over.

Going Through Hell On A Roller Coaster

I had four medical appointments in three days. Two on Wednesday, two on Friday. So, Rachel and I decided to stay in Seattle three nights and have a day and a half of vacation, something we have not done in at least ten years. I hope to hell it's not another ten years before our next vacation.

Tuesday night: We arrive in Seattle at 10:30pm and check-in at the hotel. I thought this was a very good sign:

A perfect room number for a math teacher.

Wednesday morning: Met with the surgeon who did the original big surgery back at the end of May. This was a follow-up to get the go ahead to begin radiation. Everything looks good, so radiation is a go.

Right after he left we met with the speech therapist. I've met with her several times before as she has always been present during my appointments with the lady ENT at Swedish. She gave me some swallowing exercises because in the not too distant future (probably 2-3 weeks) I will have difficulty swallowing. The goal is to not get a g-tube so I need to be able to keep swallowing, no matter how painful it may be.

After we met with her, Rachel and I had lunch at Piroshkis. We'll probably go back again in the future. It was pretty good. Our good friend Jeff joined us there and then he dropped us off at Half-Price Books while he went back to his place to finish up his work for the day. I could spend hours in Half-Price Books. I love used bookstores. Yes, we found some good stuff.

Rachel and I, then, went for a little walk around the area we were in, actually headed to a real comic book store. It was nice to just walk with my wife on this beautiful day in the big city. I'm not a big comic book guy but it did give us an endpoint to walk toward. Jeff picked us up there and we all three headed to dinner. I don't remember the name of the place we went to for dinner, but man, that was some good Italian food. It was a good ending to a great day.

Thursday morning: Rachel and I slept in (when does that ever happen?). This was the day we had planned to be our "vacation" day. We were going to be tourists, so we headed to the EMP Museum. We spent a few hours around the Seattle Center, mainly at the EMP Museum. It was frivolous and it was fun. I really liked the history of the guitar exhibit. The Nirvana and Hendrix exhibits were cool, too, but, to me, not as cool as the guitar one.

I also really enjoyed the Science Fiction exhibit, Infinite Worlds. There was a lot of movie and television memorabilia. Stuff from Star Wars, Aliens, Dr. Who, and even Mork and Mindy.

The first exhibit we went to, though, was the Star Trek exhibit. On display were several costumes worn by the cast members during filming of the various TV shows and movies, props, such as weapons and miniatures, and even the bridge from the original series. What the exhibit really made me want to do was go home and watch all six Star Trek series. Yes, I'll probably do that. My kids need to watch those shows.

After spending a few hours at the EMP Museum we headed back to the hotel. Jeff picked us up a little while later and we hit, yet another used bookstore (I have an addiction), and then we had dinner.

I was only allowed to sleep four hours or less on Thursday night because I had an EEG scheduled on Friday morning. So while Rachel slept, I stayed up. I slept from 1:00am to 5:00am, and then waited for my wife to wake up and join the living. That took for what seemed like forever.

Friday morning: Had 24 electrodes placed on my head for the EEG. They flashed lights at me and then had me do some quick breathing, all in order to see if I would have a seizure. I didn't. Then I was to rest (sleep if I could) for the next half an hour. I actually did sleep for about 20 minutes. Then the tech woke me up, cleaned my head, and then I was done. Rachel, Jeff, and I then went and had lunch.

Friday afternoon: Met with the epileptologist. This is my third doctor at Swedish. All three have been fantastic. The EEG was normal. That's not really important, though. After all, it was just a quick snapshot, like 30 minutes, out of my day. But at least nothing was glaringly wrong.

The MRI, however, was not normal.

This was the MRI that was taken at the local hospital on the same day I had a seizure on the operating table. Recall that there were "spots" on my brain. We'll now call these "spots" lesions. I have several lesions on my brain. One in particular is located on my temporal lobe. This lesion is probably why I had a seizure.

Here's the best guess as to why I'm in this situation: When I had staph endocarditis back in 2003-2004 and was hospitalized for 17 days, I had petechiae several places on my body. They were like little hickeys except for the ones that ended up at the end of my finger and toe. Those areas ended up turning completely black as the blood vessels there burst.

Essentially what happened was the bacteria that was growing on my aortic heart valve started breaking off and traveling through my body because, you know, the circulatory system and everything. I remember getting an EKG (several actually why I was in the hospital during those 17 days) and actually seeing the bacteria, which looked huge on the screen, flopping around every time my heart pumped. It was amazing. The violent pumping of my heart made this bacteria flop around, literally like a fish out of water. It was pretty cool to see. Not to experience, mind you, but to see it was amazing.

I remember one of the many doctors I had during that adventure was doing the EKG on me one day. This was after the antibiotics had started working and I was starting to feel a little bit better. While he had the EKG gadget on my chest, he pointed at the screen and said, "See that. That's the bacteria." And it was violently flopping around with every pump. "We don't want that to break off your heart valve."

"Why?" I ask.

"We don't know where it might end up," he answered.

In other words, we don't know where it will go, but it could go somewhere that could kill you. Like my brain or my lungs.

A few days later I had another EKG done. When I looked at the screen I could see my two heart valves, but the bacteria that had been flopping around so violently before was no longer there. It had broken off my heart valve.

I was devastated.

When they got me back to my hospital room, I literally just sat on the edge of the bed and cried.

A nurse walked in on me and all I could do was hug her while I kept crying.

I knew I was dead.

Obviously I didn't die, but at the time, I thought that was it for me.

I had several MRI's during that hospital stay and they showed that I had petechiae on my brain. Several places on my brain, actually. And this is what we think caused those lesions that are now present on my brain, including the one that probably caused my seizure. The bacteria traveled to those places on my brain and caused the blood vessels to burst.

Very little is 100% positive in medical care, but this is our best guess as to what has happened.

So I now have a seizure disorder. All it takes is one seizure for you to meet the new definition. I'll probably be on anti-seizure medication for the rest of my life.

That's fine.

Essentially, I had a stroke and didn't even know it.

The really bad news, though, is that by law I am not allowed to drive for six months (provided I don't have another seizure). That's January at the earliest.

This will make things difficult for the Anderson household.

Chemo and radiation begin next week. Radiation is Monday-Friday which means I need to be at the Cancer Center on those days to get treatment. For the next seven weeks. Not being able to drive myself there has put a burden on our daily schedule. Despite this difficult situation, we'll figure something out. Getting to those treatments is the top priority for me and my family.

There's also no swimming or operating heavy equipment, but that's ok. It's just the no driving that is difficult to deal with.

I next see an expert on strokes to make sure there's nothing that's been missed. I'll be doing that after the chemo and radiation treatments have finished. At least that's the plan right now.

As you know, I was unable to get a chemo port because of the seizure. So now the plan is to get a PICC line. Yeah, I said I didn't want a PICC line, but that's what has to happen. I get that early next week because that's how they are going to administer the chemotherapy. I'm not thrilled about it, but it is what it is.

My dad told me once, when he was dealing with his cancer, that getting old is hell. He was making a joke at the time, but underlined that joke with the seriousness of his and my mom's health issues.

I think it's more like: Getting old is like going through hell on a roller coaster.

There are ups and downs and curves and sudden drops and giant hills to climb.

You know, it's just life.

If you're lucky you get to ride that roller coaster for quite awhile.

I'm strapped in, but I refuse to keep my arms and hands inside the car at all times.

Here we go.