Day +8

Two weeks in. Feels less than that, so that's good.

Had to receive platelets this morning, counts got a bit too low. O positive baby.

A strange feeling--using someone else's blood...

Day 8 is when neupogen shots begin--their purpose being to boost counts. It's the start of the home stretch of my stay here--I hope.

I've never been tired like this in my life. I slept 20 hours the other day and was still exhausted. I don't like it. I'm ready for all of this to be over and to begin my recovery at home. 

Until then, this is me:

Thank you for all the shows of support. They all matter to me. 

I'll write more when my energy returns.

Ouch

Dramatic title. 

Zero energy. 

Endless nausea. 

Mentally okay. 

Physically sub optimal.

These are the dog days. 

That's all for now. No juice. 

Don't feel bad for me. I signed up for this. I'll laugh about it in a week. 

Oh also the Lions suck. 

Neutropenia, I am in you.

Neutropenia: An abnormally low count of a type of white blood cell (neutrophils).

Or > 1.0

It's not that this was unexpected, in fact it was absolutely expected, but it now means my body generally has no defense against infection currently.

That's a scary/crazy thought.

It also means I feel a lot like hot garbage now, pretty constantly.

My nurses and docs are fighting to find the right cocktail of meds to make me comfortable, and for that I love them--it just isn't working yet. 

So the puke party has officially began. It's an all day party. It's not much fun.

I wouldn't come if I were you. 

It's not a real party anyway. It's just me making strange noises and throwing

up. A lot. All the time. 

K you get the point.

Also means I get to be super cool and wear this around now too:

Call me McSteamypukes.

In general, I'm going with the flow. Doing what I'm told. 

I find myself more and more in awe of just what's happening (also more and more scared of it.) The science involved here--the process of erasing someone's immune system and replacing it with another, is incredible. It isn't fun but I'm in good hands.

Hands that will keep me safe, even if things take an unexpected turn for the worse. 

Hands that, until things take that turn, will keep handing me lots of towels and pieces of gum after puking. 

Onward.

Lastly, at a delirious puking moment, I found myself reciting the Invictus poem, which I know I've posted here before. Maybe it's a bit dramatic and doesn't apply to my situation well, but I recommend remembering it and reciting it any time you're having a rough go. It makes me feel like an animal.

Invictus

Out of the night that covers me,

Black as the pit From pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds, and shall find, me unafraid.

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate:

I am the captain of my soul.

Diagnosed Day (Day -387), Transplant Day (Day 0)

Time to hit the old reset button. 

Time to take contra/blades of steel/NHL 94/Mike Tysons Punch Out/Mario out of the console and blow on it, and softly place it back in, because that worked every time. 

If you don't get this reference, then I'm sorry for your lack of wholesome childhood (and for being old). HAVE YOU EVEN BEEN TO A BLOCKBUSTER OR OTHER MOVIE STORE IN YOUR LIFE?! 

You'll never know the joy of spending an hour deciding what movie or game 

to get, then watching it to the very end or playing it all night even if it sucked because SACRIFICES WERE MADE AND EFFORT EXPENDED TO ACHIEVE THIS FUN. 

Couldn't just Netflix your way back to the second to last episode of Breaking Bad to save the night when your 2-day rental wasn't living up to the glowing reviews on the back of the box.

Interesting. I seem to have gotten off track.

So at noon today, after the transplant, I'm pretty sure is when I'll become a super hero of some kind. Just screams something out of a comic book. Hospital. High tech blood alteration. Enemy territory. Surrounded by wolverines.

Absolute specimen of a human test subject...

Yup. I'll keep you up to date on what kind of powers have been acquired. 

Most likely: power of instant sleepiness man, bald power man, grumpy disposition man, platelet-less man, WBC-less man, never more than 6 feet from the toilet man, pushes the nurse help button a lot because I need help man, annoys the masses with frequent blog posts man, hates the Lions man....you know, all the powers you wanted when you were a kid.

So--they're giving me my stem cells back today. They bring in a frozen bag of blood, thaw it out on a table in front of me, and syringe it right in. Quick process. Some slight risks involved but it should be fine. Then the waiting game begins as the engraftment process begins. Same story, told to expect to feel "okay" for the next couple days, but as we inch near day 5, 6, 7, the toxicity rises and the counts drop...meaning fun. 

But fuck it.

It's exciting, hoping this is some light at the end of the tunnel. Long way to go, but this is the beginning.

Day 0. 

I like the symbolism of Day 0. 

I was diagnosed on Day -387.   

Much has happened in that short time. 

Much will happen after Day 0. 

Here we go. 

No mas

No more chemo, ever, hopefully. I received my last dose of this process earlier this morning. 

It was exciting and shitty all at the same time. Exciting because of the obvious--I

Might actually be done with willingly injecting poison into my body.

Shitty because I had to chew/suck on ice cubes the entire time because this particular drug can cause immediate viscous mouth sores.

I seem to have dodged the biggest bullets, with only a few small sores noticeable. 

It's all taken with a grain of salt. The team here is surprised that my counts have been so "reluctant" to fall. They frame

It as a compliment--"you're very resilient!" This contributes to me feeling "okay" so far. Calling it "okay" is setting a low bar but, given how it could be, I'll take it.   

However, fall the counts shall, dramatically. Of that I am assured. When it happens, they seem to think they have enough drugs to keep me "relatively comfortable." We'll see what that means.

Still, today is a good day. 

No more chemo. No mas. 

That can never be a bad thing. 

Stem Cells go back in tomorrow. They call it my "rebirth," or "my new birthday." I don't know about that. 

I just want it to work. 

Then I want to get the hell out of here. 

T-14 days, starting tomorrow.

In the meantime, though--I've had visitors. A brother who has two young kids took the time to come from Grand Rapids to watch the Lions embarrass themselves with me.

We like watching the tigers suck too.

My dad, who is THE MAN, has been back and forth a number of times. He's one of a kind. 

So is Emma, who, because she cares about me, slept next to me like this last night:

Upright in a lazy boy. Interrupted by nurses/techs coming in every hour, tossing and turning, a blanket over her head to block the fluorescents...and this is a girl who is serious about her shut eye. She's better to me than I could ask for, which makes her the keeper that she is. I'm twitterpated. Smitten. In love. Schmoopie.

My phone rings constantly with good friends checking in on me. Making me laugh (even if it hurts). To commiserate on how unfathomably bad the Lions were, and to celebrate the school we love being #2 in the nation (NUMBER TWO IN THE NATION AHHHHH WHATS HAPPENING?!?!)

Point is, in a place where isolation is essentially the idea, I've felt anything but. That's because of you guys. 

Happy fake birthday to me tomorrow. 

Tick tock, tick tock

The walls seem to be creeping inward. 

I still feel decent, am being very well taken care of, and in general am in good spirits. 

The Green & White I've brought with me has had the desired response (an excuse to talk a lot of shit).

Still, the hours crawl. I sleep well, but not for more than a few hours at a time, so I'm up and down all night. I don't mind it. It's nice when it's quiet. 

There is a certain "pace" to this place, that if I couldn't already sense on my own, I'd be reminded of it and told of it daily. I'm told again and again to expect to begin feeling worse and worse in the coming days. The treatments are monotonous and steady. 

Tick tock. 

There is a chart on my wall, updated daily, showing all of my "counts." My bloodwork. 

The steady fall of all of them has begun. When they bottom out, as I'm told repeatedly, I'll feel the worst. 

Tick tock. 

So I'm trying to enjoy the time I'm having now. I walk often. 

I hop on this state of the art stationary bike. 

It's undeniable, the feeling that the walls are creeping in on this already-compact place and that the worst of whatever I'm facing is on it's way. I'm not looking forward to it, but I'm not scared of it. 

The wait is worse than the arrival. 

The "tick tock" going on in my head is worse than my head being above a toilet, getting sick. 

Just get here already. Let's get it over with. 

I've been here....2 days. 

Shit. 

I don't intend to be dramatic. I'm doing okay. I'm not scratching at the doors, begging to get out of here. I'm at peace. 

I'm just inpatient. 

But if this clock keeps ticking, and nothing happens soon, then....

Just kidding. I think. 

Go Green. Beat Air Force. 

Day +6 (day one)...Also, hug a nurse.

So I'm here. 

It's been a long day. 

I'm laying in my extremely comfortable bed after finishing my phenomenally delicious dinner (the sarcasm is strong in me). It wasn't good. Baked Lasagna looked a bit more line coney dog sauce...I didn't say I didn't eat all of it:

 And as things are quieting down, I can't help but wonder, as the sun sets on my first night of many here: 

What in the hell am I doing here? How did it come to this?

Like I said, it's been a long day. 

I know what I'm doing here, I know how it came to this, it's just difficult to grasp at times. 

I'm here because a tumor was found I had surgery it accomplished nothing I went through 6 months of chemotherapy it accomplished nothing so now I get to upend my life leave work leave the things I like to do generally isolate myself from people I care about and sit and puke and seethe in anger and frustration. Tough to accept. Especially during times, like now, which I try to keep to a minimum: when I'm feeling bad for myself. I hate it. Woe is me is a waste of time. 

So fuck it. I'm gonna snap out of it in 3, 2, 1....

Today was AWESOME. I showed up, and they drew my blood. Whoa! 

Then they inserted a PICC line up my arm and into my chest. It's a central line used to administer all the drugs and medications I'll need while I'm here. Science!

Then...the main event...5 hours of CHEMO! First round of high dose BEAM Chemo. 

It looked like blue Gatorade!

And no, blue Gatorade totally wasn't my favorite flavor until a few hours ago! What luck!

Alright, that's enough of the shtick. Truthfully, everything today went pretty smoothly. I feel okay at the moment. It's just the quiet before the storm. 

I will do more chemo every day for the next four days at 9am, 11am, 9pm, 11pm. Four times a day for four days. The side effects will kick in quickly. In no time, I'll be looking like this guy again:

minus the awesome beard

I'm told to expect to feel the worst in about a week from now, so I'm going to do my best to stay positive and active in here, and hope for the best. Have to hope it's just not as bad as I envision in my head. I'm sure I'll let you know. 

The 5-star accomodations:

A lovely can-not-walk-in closet

The pinnacle of pull out beds, for overnight guests. 

A high end dresser, from Pottery Barn, I believe. 

Just a few constant reminders that this is not a hotel room. Not at all. 

Big guy for a twin bed. Also, Spartans. 

My view, for 75% of the time, for as long as I'm here. 

Smart-assery aside, the room is fine. 

There is some space to roam, I control the temp, the bathroom is close, the bed is fine--what else could I ask for? It will do. The hallways are long and walking them are encouraged--one lap is a mile. There is a lounge and an exercise room and a kitchen. 

There are people who would kill for these conditions, so I better shut the hell up. 

It's been a strange day. A long day. An experience this new, this "jarring," hasn't happened since my first day of Chemo, a year ago. 

I'm finding there are a lot of similarities. 

I don't understand why I'm here. Everyone here is 25+ years older than me. They all look incredibly ill. 

I'm different. I'm young and strong and was told I have "good" cancer. This has to be some kind of mistake.

That is the thought of a scared person. A person in denial. 

And I've had it bouncing around in my head at multiple times today. 

I've had this feeling that this is all a dream. That I'm not actually here, that I'm not isolated from the people I care about, that I don't actually have cancer, that I'm different. The idea that I'm special. 

This overwhelming feeling that I don't belong here. 

Then, just like the first day of Chemo, I've been lucky enough to be hit with a dose of reality. 

I walked into my bathroom to see some kind of strange contraption in the toilet. 

It's to "catch" a stool sample. Um. 

Wow. 

Wowwwwwwwwwwwww. C'mon. I stared at it, and had to laugh.

Not the kind of thing a healthy, strong, young person would see in their bathroom.

Who knew it would take a shit collecting toilet contraption to help me realize it. To accept it. 

I belong here. This isn't a mistake. 

So let's get it over with. 

Day +5 on deck. 

Last thought: 

If you know a nurse, or know someone who knows a nurse, or know someone who knows someone who met a nurse once....find that nurse, and hug them. Thank them. Tell them they are respected...because the jobs they do for me and for patients in general, just...good lord. 

Hug a nurse. 

Tomorrow.

Check in day. 

Mañana.

It's easy to stop dreading something when you fully understand and accept that you have no choice. 

So here we go. 

Uncle Festers puke party begins tomorrow in Ann Arbor. See you there. 

The dress code is: Denim. All denim. Thanks Mom. 

(Just about everything I packed is green). 

1 week

One week, and it's down the transplant rabbit hole we go. 

I'll check in here, also known as "The Ritz Carlton, Ann Arbor."

I hear the room service is exquisite. 

I'm here today for more appointments, more discussions, more finalizing of the schedule. It's a nervy time. I'm ready to get this started, but now that it's only a week away, the whole experience is beginning to feel a bit more heavy. I'm sure this will be no different from the others---I'll build it up in my mind to a point where the reality can't possibly match it, and it will end up seeming not so bad. It's worked for me thus far. Why change it? 

I have another appointment on Friday. An EKG (heart function test) I took last week came back abnormal. Yippee. 

The "A" in the ABVD chemo I went through initially can be hard on the heart, and there is some family history of heart disease, so I'll see the cardiologist and make sure the ticker is in working order. I'm not expecting any bad news, I feel fine--but I also wasn't expecting cancer, so we'll see! 

Ah, the thrill of the uncertain. 

About as thrilling as this moustache is attractive.

So if everything goes well with the Cardiologist, then we have a set schedule. Here it is!

6 straight days of high-dose chemo. Then reinfusion of stem cells. Then wait for counts to rebound. And wait. And wait. And wait. With lots of puking, I imagine, along the way. Then more writing. Good thing it's football season--plenty to watch on TV. Netflix will be watched--as in all they have to offer. I'll get to say "I watched Netflix" and be correct, literally. 

First look at my new pad:

The interior decorator I hired is a bit of a minimalist, apparently.

As with all things medical, this carries some risks. Most minimal, some not. I'm told because of my age and shape (round) that I should tolerate it well. Like everything I've done up until now/will do in the future, I'm just along for the ride, cheering for Team Science, and hoping for the best. 

Between my awesome family, out-of-my-league girlfriend, best friends, co-workers, and all who've reached out--I know I'm in good company and that however this goes, I'll have people to lean on/complain to/throw a bash in the family & patient lounge with every Spartan or Lions game. 

I warned the head nurse, I can get a little slap-happy when I'm couped up. She said some energy on the floor would be welcome. 

We'll see if she agrees in about a month.