Thursday, May 28, 2015

You're so vain, you probably think this song (cancer) is about you

So due to the break from chemo, and then the extension of the break from chemo, I've been off of it for about 8 weeks. 

I'm feeling better physically. Energetic. Anxious to get up and move and do things. I've been trying to lose a lot of the weight I gained as a result of steroids during chemo, and the fact that most of the food I could eat without chucking it back up immediately wasn't exactly healthy. Rice, noodles, potatoes, etc. 

I was living in starch city--and by the end of treatment, it showed.


 I'm doing well though, and have dropped about 15lbs since I started trying to.

I have hair again. A pretty respectable beard growing in. I have color back--thanks to time on the golf course, but mostly due to not being a sickly-shut in. There are some pretty strong restrictions on time in the sun while on Chemo--so I'm taking advantage. 

For the first time though, I looked at pictures from treatment side by side with a picture taken today. And it kind of freaked me out. 

Terrible Selfie Alert:



By no means am I now the image of health. Believe me--it's not even close. 

Still, it's a pretty drastic change in a relatively short amount of time. And in typical Marcus-is-torn-and-dramatic style, I'm not sure if I like it. 

I'm not too proud to admit I am fond of looking in the mirror and no longer being scared of what I see.  

It's nice to look better. I can be a little vain--it's nice to feel attractive. I didn't have any huge issue with how I looked during chemo because I mostly didn't care. It was just an experience I was dealing with and just about everything else took a back seat. 

It's nice to feel better. This needs to explanation. I can be active. Can get out and move and be social and enjoy myself. Can work and try and keep up with bills. 

It's all good. The break has been good to me and I've been trying to be good to myself. 

I look healthy. Normal. 

That's the problem. 

It's shocking how easy it is to forget that there's quite a bit of nasty stuff going on inside you when you look healthy. It's a lot like the same shock to the system I received when I was first diagnosed. "I don't look sick--how can I possibly be sick?"

I don't want to let that happen again, but I'm finding it difficult. When I looked like this guy:

"Hey Ladies."
It was a reminder, even on days that I felt well, that I was in a fight. It helped me focus. I've felt that focus slipping a bit. 

I'm not interested in being negative. I feel guilty even writing this. I know feeling good and feeling better about how I'm looking are great things. I just can't help the feeling that I need to remind myself of what's really going on. Maybe that's pessimism. I like to think it's just being a realist. Maybe (probably) I'm an idiot and should just shut it. 

It's just been easy to forget, while on trips out of town or being social with friends or while working or exercising or while doing anything at all, that I have cancer. It hasn't gone anywhere. 

I still have cancer. 

Not a sentence I'll ever get used to writing. 

And when I start treatments again, it's likely that Uncle Fester Marcus will resurface. Part of me will be happy to see him again, one more time, before I tell him to fuck off forever.

So, I'll keep using and enjoying this break as much as I can. I'll keep trying to de-fat myself, get out of the golf course, enjoy the weather, and work as much as I can. 

Cancer sucks. 

Cancer with hair and a beard and a little bit of a tan that allows me to enjoy the occasional adult beverage, is slightly better. 

I'll take it. 






Tuesday, May 19, 2015

Forgotten anniversary

It just occurred to me that I forgot an anniversary. 



May 15th, 2014 was the day I was sent to the ER and learned there was a massive growth in my chest. There was still a ton of uncertainty at that point, but that was the day this whole saga started. 

I started the blog with the first chemo treatment, so I don't think I've ever told this story. 

I had a persistent cough for a couple months that I, being the bonehead that I am, ignored. For three days prior to going to the hospital, I started having some severe chest/side pains. It felt exactly what I imagine being stabbed would feel like. 

 I visited a nearby Urgent Care once, thinking it was just a pulled muscle, and they sent me home with some muscle relaxers--which did nothing. I was still living with my then-ex girlfriend at the time (long story), and I kept waking her up in the other room with my gasping. 

I didn't sleep a wink for 3 nights straight, rolling around, just trying to find a position that I could breathe in--let alone sleep. Sitting upright helped, but it became clear that something more serious was happening. 

While working the next day (the 15th), I reached a point where I couldn't handle it any longer and raced over to a different Urgent Care that I knew had an X-ray machine. They got me in quickly and took some X-rays. I'll never forget the look on the doctors face as she looked at the pictures. Shocked, I suppose would be the word to describe it. Panic started to set in for me. 

A nurse was sent in immediately to hook me up to an EKG--in an X-ray, a growth in the chest shows up like a shadow, not in the detail a CT or PET scan supplies, so knowing my family history of heart disease, she thought I had a massively enlarged heart. She called an ambulance without telling me. The EKG came back normal, but extremely rapid (I was freaking out). 


Because the EKG showed a normal rhythm, I was able to tell her to call off the ambulance and that I wanted to drive myself. I had a sign a handful of waivers, and it was off to the ER I went. 

I remember that short drive well. I called my Dad, told him where I was going and to meet me there. I spent the rest of the time having this really weird internal conversation. 

"It's probably nothing. Just relax. But what if you're dying? No, no, no...it's probably nothing. Jesus my heart is beating fast. Listen to some music. Nope, turn it off. Calm down, weirdo. Quit being such a candy ass. It's probably just something wrong with the X-ray." And on it went. Shocker--it didn't do much to calm me down. 

The good news is, when you show up to the ER with a copy of an EKG in your hand and complaints of chest pains with a family history of heart disease--they don't keep you waiting long, at least not in the waiting room. They got me back pretty quickly, and after hooking me up/seeing this was not a heart issue at all, I waited for the CT scan. 

Having done countless scans of this type since, it feels silly now, but I remember it being terrifying. Claustrophobia set in, it's a quiet room until the machine makes strange noises. I mean, 45 minutes ago I was at work and nothing was wrong...what the hell am I doing in this thing? I was in the best shape I had been in for a long time at that point--none of it made sense to me. Finally, they wheeled me back to my room, and I waited on the doctor. 

He arrived. 

"Good news--it's not your heart. Bad news, you have a very large growth in the middle of your chest...most likely a Thymoma or Lymphoma of some kind. These are treatable, if they are cancerous though. So you should be okay."

Wait wait wait. What? 

"Yes, a rather large growth. Possibly cancerous, in the middle of your chest. We're going to admit you overnight to monitor you, and schedule a biopsy soon."

What I said: "Oh okay, Thank you Doctor. 

What I wanted to say:

It had never occurred to me that cancer was even possible until that moment. That's something that happens to older folks. Unlucky folks. Not to young men. This guy is a quack. He doesn't know what he's talking about. 

Total denial. A state of denial that would remain until 7 days after my operation to remove the tumor, which didn't happen until August 14th, when I was officially diagnosed with Hodgkin's Lymphoma. 

The story itself isn't all that interesting as I re-read it, so, sorry about that. What is interesting to me is how I can remember everything, down to the smallest detail, about that day. I know what I was wearing. I remember the feeling of my heart beating out of my chest. Remember my Doctor's weird goatee. I remember a ringing in my ears when he told me what the CT showed. I remember the smell of the room. A flickering fluorescent bulb in there that needed replaced. I remember calling my ex to ask her to bring me some things since I was going to have to stay overnight, but she had some wine and couldn't drive, so she packed a bag for me and left it for my Dad to go grab. I remember snarling at this poor doctor who woke me up at like 3:30 to check on me during his rounds (I'm a bit of a monster in the morning). I remember that the next day, the first thing I did when I was discharged was walk to a bar across the street from the hospital where some buddies were, and I attempted so hard to act normal. To just morph back into the reality of the day before. Ignore what had transpired in the past 24. 

Nothing to see here, guys--pass me the pitcher. 

The other thing that blows my mind about this story is how severe the pain I was experiencing was before I went in. It was crippling. I've had numerous sports injuries, though few were serious, and this was like nothing I had ever felt. 

Then, all of a sudden, once diagnosed...the pain disappeared. Gone. Hasn't returned. 

I've experienced more like this in the past year--the body kind of "taking over." I had the cough for a couple months that I ignored, and it was as if my body had enough of my shit, and just took control. 

"Okay, dipshit. You can ignore a cough. Try ignoring this. Take your ass to the hospital...there are some things going on in here and none of them are good."

It's a strange thought, I know. Still, I can't find another explanation for why a pain so severe would just disappear like that--other than that my body had taken over, forced me in there, and forced my mind to learn/accept that I needed help. 

John Mayer told me my body is a wonderland, and HE WAS RIGHT. 

I supposed I've rambled long enough. So much has happened since last May 15th. Had a major operation. Was a Best Man in a wedding. Up and down the emotional roller coaster and time in and out of hospitals. Work. Spartans. 6 months of Chemo. I started a blog...which on May 15th, 2014 would have been an insane idea to me. 

People have come and gone from my life. 

I've experienced every possible emotion. Smiled, laughed, cried, punched walls, puked, been anxious, furious, sad, I've screamed. It's been a full year. A year I'm lucky to have had. 

A good year. Yeah, that sounds crazy. It has been, though. I'm still here, and I know some people who aren't. 

It feels like yesterday that this all started, and I might still have a long way to go. 

So here's to getting to May 15th, 2016--and being cancer free by then. 

And if not, then I can write another obnoxiously long winded uninteresting blog post recapping the last year. 

Lucky you. 

This has no reason to be here other than that it's hilarious. 



Sunday, May 17, 2015

A Dose of Deep Thoughts



"To me, clowns aren't funny. In fact, they're kinda scary....I've wondered where this started, and I think it goes back to the time I went to the circus and a clown killed my dad."-Jack Handy

This is amazing. 



Now an actually meaningful and not just hilarious quote:

"If you're going through hell--keep going."-Winston Churchill

fgTjdfsnlkjfdsa

Wednesday, May 13, 2015

Wait...what?

Bit of a curve ball I've been thrown. 

Minutes after a meeting with my boss (who is the man) to discuss how he wanted to handle my potential months long absence from work, given the intense course of treatment I was scheduled to begin, my phone rang.

It was my doctor, who let me know that after presenting my case to the UofM Lymphoma board, they recommended that instead of beginning the two months of chemotherapy followed by the stem cell transplant/hospitalization immediately...we wait six weeks, do another PET scan...and then start then?


I must have sounded like an idiot. 

"Wait....what? So I do or don't have chemo tomorrow?...Actually, can you just start over? None of that makes any sense."

Thankfully, he's a patient guy. He's also been very honest with me from day one, which is a reason why I'm a huge fan of his. 

He went on to explain that basically:

-The board "generally agrees" with his original diagnosis and recommended course of treatment

-That though the PET scan likely indicates refractory cancer, the board was not comfortable considering it totally conclusive, and wants to wait 6 weeks to make "as sure as possible," given the intense nature of the treatment

-That if his diagnosis is correct, 6 weeks of time will not make a large difference in the size of the disease 

-And basically "said without saying" that he is very convinced of his findings, that the board is operating under an abundance of caution, and that I should fully expect to begin the recommended treatment in six weeks. 



Okay? Is this good news? 

I'm trying to just let it go and move on, but it was a strange call. Yes, 6 weeks of normalcy will be great. I'm happy to have it. It's also nice to hear that there may be a chance (albeit small) that this may not be as serious as initially thought, and that I may not have to go through the more intense aspects of treatment. 

Some things I don't like, though: gearing up mentally for an operation or treatment is a process. I'm not trying to be overly dramatic, but it's tough to get to a point where you can honestly say to yourself "I'm ready." 

I felt like I was--so part of me just really wanted to get started. Let's get this over with. 

I also have a hard time classifying this as "good news." I don't want to sound like Mr. Negative, but I feel like once I start considering this:

"Hey you probably have this cancer I said you did and will probably have to deal with this annoying treatment and it's a pretty dangerous situation....but you can have 6 more weeks of pretending to not have a time bomb in your chest" 

as good news, then I'm losing the fight. 

I'm happy. I'm going to use the time well. Get healthy, keep working, keep writing, golf, enjoy "freedom." 

I'm just afraid of complacency--the feeling that we're not doing anything. Afraid of "letting my guard down." That's a weird thing to say, and feel. I'm not fighting anything but cancer, which is an abstract fight to begin with. I have little control over what actually happens. Still, I have to hang on to the feeling that choices I make and things I do make a difference. Maybe that's weird. Maybe that's weak. Maybe that makes me a control freak. Or just a freak. I don't care. Maybe you're the freak. LEAVE ME ALONE, FREAK. 

Anyway...

The process of preparing to start treatment resets, and while the sliver of a chance exists that I could receive some good news in 6 weeks, this will be the only time I mention it. 

I can't afford, mentally, to expect that. 

It's so lame, I know, but at this time, in this realm of my life--I've gotta stay angry. And I will until I hear the words I want to hear from my Doctor, and not a second before. 

This is my cancer face. Ergo, vis a vis, concordently....Cancer is Toby. 









Sunday, May 10, 2015

Happy Mothers Day

"My mothers menu consisted of two choices: take it or leave it." -Buddy Hackett

No nonsense lady. She's missed. 

She had to have been pretty great---only a world class Mom could dress her kids like assholes and still be loved by them. 



Enjoy your day, all the other Mom's I know!

On anger, and lying to yourself

I'm still furious. 

I'm well past the "woe is me" stage again, and I'm as ready as I'm ever going to be to start treatments again. 

Still, I'm so damn angry, and I can't shake it--and I'm not sure if I want to. 

It doesn't make sense to me that after an invasive operation and 6 months of pretty intensive chemotherapy, I'm essentially still at square one. In many ways, worse off than I was when I began. I don't understand. 

I know it doesn't have to make sense. 

Understanding what's happening and why isn't a prerequisite for coping. I don't know why this has happened. I don't know why nothing has "worked" yet. I don't know what lies ahead. I just know, right now, the uncertainty, the questions that can't be answered--even by my doctors,  leave me fuming angry. 

Not the kind of anger where I'm stomping around, scowling at people. At the moment life is as normal as ever and I have been social and made a trip to Chicago and in general am content. 

you wouldn't like me when I'm angry...and have cancer
In the quieter moments though, when there are no distractions and nothing else to occupy my thoughts, and I involuntarily begin to consider all of the details and implications of my illness; where there once was false bravado and some amount of optimism and insight, there is just anger. 

It's well directed. I'm angry at the predicament and at the disease. Angry that the disease will "get the best of me" in some ways (hospitalization, not death). Angry that the people who have been so good to me at work will be asked to make more sacrifices.

Angry that my family and the people who love me couldn't receive the news they were hoping for. 

 Just fucking angry. 

 When I feel this anger, I feel energized. I want to start treatments immediately, I want to do whatever the hell is necessary to "win," to succeed, to survive. 

I also feel isolated, cold, and while still just as determined as before, less optimistic.

I'm not holding on to it, the anger, but it isn't fading on it's own. I don't know if this will benefit me or if the generally negative emotion hinders me. Maybe it will fade on it's own. Maybe it won't. 

I don't know if I want it to.

It's difficult for me, and maybe even unnecessary, to share the more emotional aspects of this experience with all of you. To offer glimpses into my psyche. 

I can hardly claim to be a "private person" any longer, since I made the choice to begin a blog and share it with the world. 

I know why I thought I started it, and to this point it's been a useful tool in many ways. I've been honest about the details of "daily life" during treatments and how I've been feeling physically, but haven't really delved into the emotional experience. That requires a certain amount of balls that I don't think I have.

It is evolving now, though. 

I now see this blog as a place that forces me to be honest. Honest with you all about the experience, yes.

 The truth is though, much of what I write here is nothing more than me talking to myself. 

I know a good amount of people read it, but when I'm sitting here alone, just the keyboard and my thoughts, it's just me. 

It's tough to sugar coat the realities when you don't allow a thought that scares you to wander off and be replaced by something more pleasant. 

It's hard to lie to yourself in written word. 

I'm furious. I'm angry. 

Probably because I'm scared. 

If anger is the alternative to fear, I'll take angry every time. 

Anger doesn't take defeat lightly. I'm not going anywhere. 




Wednesday, May 6, 2015

My joke is ruined

In the last year I became fond of telling everyone about to turn 28 not to be too excited because "all I got for turning 28 was cancer." I always laughed harder than they did. 

Jokes on me I guess, because I turn 29 today, and I got a nice batch of cancer again. Gotta laugh, right?


29 IS AWESOMEEEEEEEEEEEE

Invictus, again.

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. 

-William Ernest Henley

Tuesday, May 5, 2015

Shit.

In a perfect world, this would be a celebratory post thanking all of you for all of the support I've been shown over the last 7 months.  I'd be excited about being cancer-free, and you all would be excited about no longer having to read my overly dramatic writing style. 

The blog ends when cancer ends. 

So the blog continues. 

I'll get into the emotional/mental aspect of what this "new" diagnosis means to me and what it means going forward, but I know many of you had this date circled, and I want to get the information out there. 

A recent PET scan shows a considerable amount of new cancer in my chest, "relapse" or "refractory" cancer, it's called. In Hodgkin's Lymphoma patients, this happens in less than 10% of them--so at least I'm special. 

Long story short, it isn't good. 

Good news, though, is that my doctors are still classifying it as "curable." That is a very important distinction. The aim of all I'm about to take on is to cure the disease--not just treat it, slow it down, or extend life with it. The idea is to eradicate it. 

Which makes sense, given the dramatic nature of the treatment. 

I'll begin with two months of relatively mild chemotherapy. It won't affect my life a great deal as the side effects are mild. 

I'm going to use these two months to get as healthy as I can, because after I finish these two cycles, I'll undergo BEAM Chemotherapy accompanied by a Stem Cell Transplant, and will spend as much as 6 weeks hospitalized. 

In short, this is a nuclear option. Almost literally. 

My doctor described the treatment and transplant this way: 

"Imagine an island with lots of bad people, and a few good people. Then imagine taking all of the good people away from the island. Then imagine nuking that island, letting it heal, and bringing the good people back."



The treatment is so harsh, that should I come out on the other end of it, I'll have to be re-vaccinated. 

Yes, as in the vaccines you receive as a child. 

It's almost like I'm a malfunctioning nintendo console...the docs are taking the game out of me, blowing in it, and hitting the "reset" button. (Only older people will get this reference). 

The odds of success are in my favor, but as I've learned now--there are no guarantees when it comes to beating this fucking disease. 

That's where we are. I'll have more details and will probably get into how I actually feel about all this, especially about a month+ hospitalization and the insanely intense treatment I have in store for me....but I'm going to stop myself here, because I'm a pretty angry person right now. 

I'm going to be fine. 

For 48 hours though, my attitude is something like:


Sorry for the language. 

No I'm not. 

Also, I think my doctor voted for W based on his analogy.