SUPERFLUKE by Justin Sullivan

My final entry.

6 months.

Where do I start? What the fuck do I have to say about the past six months… nothing. Everything!

Going into the past six months, I’ve never felt more prepared to do some thing as I was when I started this.

And now, I see that I was not at all prepared. At least not to live. This short period of time has changed me. In every way.

The past month of my life has been perhaps the toughest month I can ever remember. Even two months ago I was far beyond my breaking point. This past month though was just torture. I’m not sure what began first. My fear of living or my fear of living the life I had. I went into this ready to die more or less. Well, I accepted death by cancer as a possibility a long time ago. Still, going into this past treatment I felt ready to fight. Ready to give it my all. I had hope that something good was going to happen. But that thought was more specific to me and my life with Shannah. I hoped that I could have a life that was all planned out in my head. Things were already headed in that direction. I could imagine the rest of my life and it was a good life. I am not sure when that changed. I’m still trying to figure out what changed.

I finished up my time in DC as a resident. That part is over. I now have a new immune system. That part has just begun. But now I don’t know what to do. Where to go. How to work it all out. My relationship with my fiancé took a completely different turn than what we were expecting. Or hoping for. I feel now, more and more, that this part being over is the right thing. But I am still sad. I don’t want parts of that relationship to end. The friendship that we built up. This was a very difficult time for both of us. We both equally busted ass to get through it. Unfortunately, we didn’t get through it together. That fucking sucks. But, that part is over.

Now, I am back in Dallas. I will be here for two weeks. I have no plan at the moment other than to work. I have to be back in DC for another round of chemo on the 20th of July. After that I am lost. I was not prepared to live my life without Shannah. I have a few options, ideas, thoughts. But nothing concrete. It is hard for me to remember the last time I didn’t have a plan for my life. It’s a very unusual feeling for me. There are a lot of things I want to do in my lifetime. But what the fuck do I do next?

I have quite a bit of debt now. I owe too many people too much money. All because this fucking disease. I feel like this disease has taken more than I wanted to live without. But I want to keep living. I want to keep fighting for a better life. I always have and I hope I always will. There are a lot of things this disease has given me in return. The freedom to be who I am and in some ways who I want to be. An excuse to speak my mind. I am not afraid to appear crazy to the rest of the world. The fact is – I am crazy. But we all are. This experience has helped me go beyond the things I am insecure in. My body. My mind. My life. Yes I still have insecurities. But I think that having cancer has made me not fear those things about myself. All the things I don’t like. Instead I want to change them. Explore who I could be. I could never honestly say that I think cancer is an excuse to do or say anything. However, I think the fear of not living now outweighs the fear of dying. Dying from this disease doesn’t scare me as much as not living my life does.

I think that’s what I would say about the past six months of my life. I've learned more than I expected. Changed more than I'd hoped. Lost more than I wanted to. And now i have no plan. But I think it was worth every second, every penny, and every tear. It was worth it all.

I would like everyone to know this. All of the furniture and household items that were donated to me have been passed on to a homeless woman who is starting cancer treatment at the NIH. I was not fortunate enough to meet her face to face but I do know it was very appreciated. Thank you all for your help. If there was a better way to say it than that I would. I don’t know of any other way though, than…

Thank you.

To the Frank family. I am forever in your debt. You are amazing. I love you.

Kim. Well... thanks for giving me life. That was pretty cool of you.

And to Shannah, I owe you everything. More than I could ever repay. All I can offer is to live my life to the best of my ability. And I hope I can make you proud. Thank you for everything.

This will be my last blog post here. I am done with this chapter of my life. I am moving onto the next chapter whatever that may be. So, this one is done. I hope this finds its way to someone who could really use it. Perhaps someone somewhere will read about my fucked up life and find some sort of hope or healing or direction for their own life.

Thank you for sharing this experience with me. I hope you enjoyed it. I did, sometimes.

el fin
Justin

My McRib is McBusted.

Tonight I am breaking down all the furniture and getting everything packed that I am going to donate. It has to be ready by tomorrow.

Unfortunately, I have to do it with another busted rib. I have the most powerful cough this world has ever seen. Or heard. How would you write that... has ever felt? Anyway. That shit is super powerful. So powerful in fact that my mcRib is mcBusted.

Strong enough to break two ribs total. One a couple months ago.

This time it was on the left side. And again there is nothing that can be done.

I'm sure that moving furniture all by myself is not helping but, eh... fuck it.

Tomorrow, after I get everything done at the apartment, I have to pick my sister up for one more blood draw. I am not sure if I am going to get a 'booster' (it's like smoothie king!).

Wednesday, is all day at the hospital. Thursday is clinic and possibly the cell boost.

Thursday night...

...is Dallas.

I will be back in Dallas for two weeks. It still doesn't feel like I am getting to go home. And now that I have no home... well, at least the canvas is blank I suppose. If you piss on a blank canvas and hang it the wall does that make it art?

I have to be back here on the 20th as of now but that might change. I will start my next round of chemo. That will take a week and then I have no idea what I am going to do.

This is where it would be great to get some guidance. I feel so lost in so many areas of my life right now. Everything seems so uncertain and there is no telling what is going to happen. Which makes it very hard to make a plan.

But, I know that something is going to happen. Something great I hope. It feels like it. I'm ready man. At this point I think I might just try to take over the world. It just seems like I should do something unimaginable after all this. I've never felt so ready for something amazing to happen. It's fucked up to think that a few months ago I was fully prepared to die. Now I am fully prepared to be king. The whole world would call me The Boss.

Chances are neither one will happen. I won't die and I won't run shit. My greatest fear. To do nothing but just exist. Live 90 years and no one ever know me. I am so afraid of that happening.

Instead I will keep moving forward. You can't match my hustle.

I will keep moving furniture with a busted rib and hold on to the hope that something will happen. Hopefully soon.

Justin

a beautiful mess...

Why is it we always seem to find what we are looking for when we are not looking for anything at all. When the universe has the solution ready and waiting before the problem has even revealed itself. It's like life whispers exactly what you need to hear while embracing you. During the toughest time. But then, in an effort to develop patience, you hear the most beautiful words ever uttered only to find your self waiting for the substance of the thing you now hope for. I guess this is where faith comes from?

I suppose if you hold on and make it through this time of waiting without going absolutely insane it will be worth it. All the pain, the loss, the fear, the fight, doubt, excitment that led to disappointment, the bullshit that led to success... it is all worth it. Even all the shit that went down prior to this. It was worth pushing through just to feel this. To know this for once, to know these things for real...

...shit, for the first time in life. To feel what you have never felt before. And to know that you are able to share this experience... this beautiful mess that you've become.

And while you wait... a challenge is issued.

Stick with me, kid. We're going places.

The Boss

And it still has that new immune system smell.

A most interesting turn of events...

I am going to try to explain this without rambling on. I might repeat myself... ok, I will most likely repeat myself but I would really like to drive this point home.

IT FUCKING WORKED!!!

I HAVE A NEW IMMUNE SYSTEM!!!!

The whole point of the transplant was not to get rid of the cancer. It was to get a NEW IMMUNE SYSTEM. To transplant the blood from my sisters body to mine without killing me. This is more dangerous than chemo. There are still risks involved but...

IT FUCKING WORKED!!!!

My immune system couldn't fight off the cancer. If I have a new one then hopefully it will fight off the cancer.

The frustration I have felt up till today was that I have been in this eternal limbo. Not really moving forward or backward no signs of progress or failure. Just waiting. Now, most of the cancer is gone but some of it has grown. Not drastically but growth is not a good thing. I will continue with chemo but it is only to get the cancer under control so the new immune system has a chance to do its job.

By all accounts, this has been a total success. And just as wonderful - I get to leave!

I will be returning to Dallas in two weeks. I will have to come back to DC to continue chemo for a little while and for check ups. But the next step is to give the new system time to go to work.

I still might die from cancer. I still have cancer.

But I have a new immune system.

So, a quick summary:

IT WORKED!!!!

It's like going to a car dealership and trading in your old shitty car that leaks oil, the seat-belts don't work, no airbags, the stereos missing, the antenna is all crooked, tires are flat and...

...it just plain doesn't work.

And just like that... you trade it in for a brand new car.

Now I actually have a chance to get somewhere.

And it still has that new immune system smell.

Justin

Rainbows and the punchline of gods favorite joke.

Chemo and stemcells. It's the joke that never ends. Unfortunately, I am the punchline.

I received a PICC line yesterday. And today I have to start chemo. Not as much chemo as before but of the three they poisoned my veins with the last time around - this is the one my body reacts to the worst.

Strapped with my favorite accessory of all time, the fanny pack, I will have five days of chemo and three weeks off. Next Wednesday my sister will have to come out and make another small donation of cells.

Here's the best part of all: my lease for this apartment is up on Friday!!!

Nice. I knew that this was going to happen. I suppose it is my fault. I have been bitching for two months that they need to give me some sort of idea as to how much longer I should plan to be here. I have no clue what the fuck I am going to do... I have no home here and no home at home.

This joke just gets funnier and funnier.

So, as soon as I am done with chemo on saturday I will be moving all of the shit out of this apartment. By the time I am done doing that, Kim will be here. I will hopefully receive the cells on the 4th of July. If i don't get the cells next week then I have to stay here for an extra week.

After that I have no clue...

But at least it is exciting. (finger gun to head)

Needless, to say yesterday was a pretty shitty day.

However, when I finally got home this was waiting outside my door.

Rainbows and the punchline of gods favorite joke.

Justin

insert image of me waving like a nerd

This could very well be the last post I make in this thing.

I started this to keep a record of my time here. I had no intention of anyone reading it. Yes, I did share it's location with people I thought would like to see inside my soul. But, now my soul feels a little used. Like I have been touched inappropriately. And even though I gave out the address, I really didn't think anyone would like to read the things I write.

It was nice that people could keep up with me without having to call and ask a ton of questions. But the fact is that I am worn out by this... I wanted to keep an online journal of my own private thoughts. Only, I don't care if you know what I am thinking. It makes it very tough to do so when I am more concerned with what people are going to say back or how they are going to read into something that is meant to be nothing more than a reminder of what I was feeling at a certain point in time in MY life. (see what I did there? I put MY in all caps. To emphasize that it's MINE.)

This feels more like a place where I come to give a quick 'slap in the face' then a safe place for me to write whatever I want. I feel as though I need to be careful with my words so I don't hurt anyone.

What about how I feel?

I have actually heard, from people who say they love me, that...

'I am too negative'

'I am too angry'

'I am to up and down' or 'emotional'

If I say, 'I am sad.'  Well, then yes I am sad. But believe me there is no need for alarm. If I were going to flip out and do something to myself or in some way try to end my life, don't you think I would have done that years ago? 

The very thought that someone thinks I would give up or they would do a better job at dealing with my life leaves me thinking one statement -

Bitch, you can't out hustle me!!!! This fucking disease is not going to bring me down that fucking deep!

Yes, I have been in a darker place than I have ever known. This has, by far, been the toughest thing I have ever dealt with in my life. And trust me.... you have no idea what the fuck I've been through. But the fact is... I see no difference. Everyone I know has had to make it through something. There will always be something new to deal with. There is undoubtedly going to be more trouble than you are prepared for. If not... than good for you, but 'meanwhile, back on earth...'

...shit here is getting crazy. And as far as I am concerned the fun's just begun. 

I hear, 'People don't know how to show they care.' or 'No one knows what to do.'

Here's the thing...

I DON'T KNOW WHAT TO DO.

HOW THE FUCK WOULD ANYONE ELSE?

I've been dealing with this for four years. That's longer than I've known most of my friends. Before I ever met them. I know my cancer better than I know YOU!!!! It's my closest friend.

And it doesn't scare me. I am not going anywhere. Well, I might disappear to some island somewhere. But, chances are I'm taking my cancer with me.

Thursday I found out that the cancer is no where close to being gone. It is growing.

As of right now I am not sure what will happen. We (all of us involved in this from the beginning) were under the impression that after 100 days my time here would be complete. It is not.

Saturday was my 100th day. Yes, congratulations to me!!!

Tomorrow I will hopefully hear what the doctors have planned to 'get the cancer under control' and allow the transplant to do its thing. Up to this point I have been very fortunate. Things have gone exceptionally well. There has been a time or two when I would have written that last sentence a little differently (ie: the fucking blood clots and the total meltdown in the hospital).

As far as I know the next steps might include but are not limited to:

more chemo
my sister returning to DC so they can collect more stem cells
me receiving more stem cells
radiation - but the radiologist thinks that would be a bad idea so I will see what the oncologist thinks

With all of this I am still not sure what is going to happen.

My debt is growing. I am now well over $150,000 and that does not include life after DC.

My lease runs out in two weeks.

My relationship with Shannah has taken an unexpected turn. Which in it of itself is a mind fuck and pretty devastating for all those involved.

I have no money.

No steady source of income.

Few close friends.

Little contact with my family. Though my mom and I are talking a lot more which has been nice. Hi MOM!!! (insert image of me waving like a nerd)

I am unable to make any decisions about my future due to the fact that I am not clear as to what the Doctors want to do to me....

...and I am sure there is more but I can't think of it.

I am under a little pressure here. With no answers.

But I still have hope.

I wish I could bottle hope. Then I could put a string around the top of the bottle and sell it.

'Hope on a rope.'

That would be dope on a rope. Shit. I know people would pay good money for some hope. I would be set. Nice.

And that's all I got...

I would like to close todays message with this thought:

If you like reading what I write here, then please continue to do so.

If, for some reason, you feel the need to 'get involved' and tell me your thoughts...

I have two words for you...

Suck it!

Except for Dave Shafer. Dude, feel free to write me all you want. You're such a badass. And I love you both!

 

Farewell.

Justin

I'll see YOU on the river Styx.

Thursday was Day 98. I had a butt load of tests done and was able to get most of them on video.

I also met with my Docs. Generally what happens on Thursday is:

The fellow comes in, her name is Rachel, and asks how everything is going. Since everything pretty much stays the same from week to week this part goes kind of fast. This thursday it did not go so fast. She had this look on her face like there was shit on my chin or something but she didn't want to be the one to point it out. Finally, she asked if I wanted to know the results from my PET scan.

I can tell you this much... when a fucking doctor ASKS if you want to know the results of any fucking test. YOU DO NOT WANT TO KNOW!!! That means you are fucked. The results are bad. Fucking run. Don't even say no. Just run.

It feels like I am just spinning in place...

I will find out more about what the next steps are on monday.

I have other video that I hope to load over the weekend, if I get a chance, of my day 98 testing.

Justin

(for those not in the know, PFT means a silent fart.)

It's 5:30 in the morning and time to go the hospital.

My hip and leg have been killing me all night so I got absolutely no sleep.

Today is day 98. I will have an MRI, a blood collection of 19 viles, an ECHO, and a PFT...

(for those not in the know, PFT means a silent fart.)

...today is going to be a looooooonnnng day.

I will also meet with my team of Dr.'s. They of course will not have any information for me as to where I am in treatment but that is yet one more thing I have to do today at the hospital.

Saturday marks day 100!

I should get the results from all of my testing back next Thursday.

Man, I hope this shit is working.

If not...

"I'll take, 'Suck it!' for a hundred Alex."

Justin

Pinch poke you owe me a coke.

This week is my week of re-staging. Or as I like to call it, 'Torture week'.

Today I had a bone marrow biopsy and a PET/CT scan. The bone marrow biopsy is the tenth one I have had in 2 years. Yes, this is #10!

They never get any easier and it still hurts like a son of a bitch, but...

I FINALLY GOT THIS ONE ON VIDEO!!!

I must warn you: the following video might be a little gnarly.

This guy is not the most gentle of giants. Please note the needle bending at 1:40 into the video.

And it is about ten minutes long...

Enjoy!
Justin

Up with hope! Down with dope!

Today I feel like I am going insane.

It seems the more I try to take a step back to figure things out or the more I try to be left alone and focus on getting better the more I screw everything up around me.

For the entire time that I have been going through cancer treatment I have found the following to be true...

When I need to be anonymous I can't be left alone.
But -
When I need a friend I am invisible.

Yet somehow I am always at fault when shit goes wrong.

It can leave you in a place where you just don't care anymore. I remember my childhood felt like this quite often. Eventually I got to the point where I didn't care. And I would hurt people intentially just to get it over with. I do not want to find myself in a place like that again. Where I am not concerned about the consequences of my actions. However the more I try to be a better person the colder I become.

Very numb. Very lost. Very apathetic.

I read a post on a cancer forum that I think stated it better than I ever could.

'I might be apathetic, but I'm not sure if I care.'

What a terrible place to be as a person.

Up with hope! Down with dope!

Justin