The End of the Hard Stuff

September was a hard month. It was the final month of my “consolidation chemo”… which, as I understand it, was a way to consolidate every possible negative side effect of my treatment and forcefully cram it up my ass for three straight weeks. My chemo took the shape of General Sherman as he scorched his way through my American South.

Some Civil War history lessons for you
Some Civil War history lessons for you

The total warfare tactic was designed as a final blow against my currently non-existent disease.  South Cancerlina had surrender months ago, but union doctors needed to burn it in order to make sure the war would not continue in the future.

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Adding Salt to the Ocean

Buoyancy has eluded me for months. I’ve been an object heavier than the medium in which I’ve been suspended. This has caused me to sink, has kept my head below the surface and left me suspended beneath the surface plane in which I felt secure enough to exist.

It’s been like this for months, which is why I’ve been quiet. It’s hard to communicate under water when you only have a few precious lungfuls of air that you think you’ll need to survive when you are under.

The current is changing, though. I’ve found a way to shed some of my mass or increase my volume, or whatever makes more sense for the density equation. We’ll say I gained some volume since my chubby travel season belly definitely hasn’t lost any mass.

yes I wore a ton of sunscreen all the time
yes I wore a ton of sunscreen all the time

I’m in Hawaii for a week with Liana for one of her best friend’s wedding. This is our seventh and final wedding of the summer, and it takes places in Liana’s home so we have made it into a week long vacation. Unlike the other weddings we’ve been to this summer, we have the time stop and smell the plumeria flowers and to swim in the ocean.

Lanikai Beach

Liana grew up in what used to be a small sleepy beach town on the east side of Oahu. Her house is literally three blocks from, what many say, is the nicest beach on the planet. The waves are minimum, the sand is fine, the water is warm and perfectly turquoises, the view is otherworldly, and it was the best kept secret in the world. Since those days, however, magazines started picking up on it as did America’s First Family. Since the Obama’s started to vacation there, the quiet empty beach has steadily filled in with weird Japanese tourists who wear matching beach outfits, carry their selfie sticks into the surf and ride around town on segue tours. The best kept secret of Hawaii is now out and the quiet residential Kailua Beach has had a tourism industry violently thrust inside of it with out even the most basic courtesy foreplay.

This is the sentiment of the locals, as I am but an outsider here for the first time. Having the tour guide that I do certainly puts me into a different category than tourist…. perhaps “honored guest” fits, but either way I’m still a haole (which basically means white person, non-native, mainlander).

We traveled all day on Wednesday to get here, and it took a toll on me physically. I’m in the midst of a heavy chemo treatment and am experiencing brand new and exciting physical deteriorations. I had spent 36 hours in the hospital on the days leading up to the trip to have the fat skimmed out of my blood, so I’m covered with junky bruises, needle marks and I literally feel drained three times over. Beyond this my skin and nails are brittle and my mouth is filled with so many sores that it is painful to talk, which has probably been a blessing for my better half (the mouth sores got so bad that I actually had to go to the hospital on monday night because I was in so much pain and was running a 102.1 fever, which is bad news for somebody with a compromised immune system)…but the most exciting new development has been my crippling leg cramps. Ever since the six and a half hour plane ride my leg has been in a constant state of cramp pain tightness or pinch nerve soreness that has been hard to shake. I’m limping around 10 steps behind everybody and have trouble changing positions. Getting off of the toilet requires an embarrassing amount of work. The first night we spent here was so bad that I couldn’t get more than an hour of consecutive sleep because I had to constantly change positions. I was alone (I didn’t want to wake anybody up for a stupid leg cramp) in a new place with a new surprise medical issue to deal with, it was emotionally taxing, I was afraid. It could have been something serious like a blood clot and I didn’t want to have to spend another vacation in the hospital (I was destined to anyway, little did I know).

Just another vacation hospital selfie to add to the rest! I had a fever and an inflamed tongue
Just another vacation hospital selfie to add to the rest! I had a fever and an inflamed tongue

When the sun came up at 5:30 I felt relief and filled Liana in on what I had been going through. We walked to a coffee shop by the beach so that I could stretch my leg, eat a banana and take inventory of my health. The pain worsened as I limped, I feared I would get worse before I got better…

Then I stepped into the ocean.

I was light, I was lifted, I was cradled, I was calmed, I was held, I was gifted, I was healed, I was played like a song.

This Ocean. Kailua Beach
This Ocean. Kailua Beach

I didn’t even have to move to stay afloat, I was buoyant. The water, the salt, the sand, the particles all suspended me on their surface. I could breath with out struggle or the insecurity of wasting my air bubbles. I was floating, I was free from the gravity that pulled on my leg and on my heart and on my mind… I floated above it all and spontaneously released all of the tension and insecurity that I had allowed to build within me for months and I added some salt water into the pacific.

I didn’t really know why I was crying at the time, at first I figured it was just the pain relief, but it was clearly more than that. Later that evening, Liana’s Father (who has been immeasurably kind and compassionate this week), a Doctor of Psychology, helped me hone my perspective on the matter. “You stopped being funny,” he told me in reference to my few and far between recent blog posts. He was right, of course, which is why I stopped writing. Everything that came out of my was a bitter complaint that was born from my new-found insecurity and annoyance with the chemo program. I had lost my optimistic perspective and instead of replacing it with negativity, I decided to withdraw from it completely. I had lost the ability to control how I reacted to my treatment, which I started to view as nothing more than an annoying burden considering that I have been cancer free since February. The only way that I could see it was as an unnecessary annoyance that I had to keep going through, but for no reason. I felt like I was robbing Peter to pay Paul with my health, but I didn’t owe Paul any money anymore. I was just caught up in some racket out of which I could not escape. This left me joyless, depressed and insecure, so I retreated into myself and tried to wait it out like a wounded animal. I did not want to spread this disease, so I kept it to myself because it is very infectious.

My moment in the ocean, however, recharged my optimism. The tangible leg cramp relief kicked off a full central nervous relief system chain reaction. As my physical condition improved my mental condition improved which improved my emotional condition. It was a full spectrum orgasm of health and it was exactly what I needed in order to appreciate life again. Every tear that fell from my face and splashed into the water made me more and more buoyant to the point where I didn’t even need to tread water. I was so cleansed that I no longer needed to apply any effort to exist. My optimism has returned and it is clear to me now that I need to hold onto it. I have nothing but reasons to live and to be happy for it. The bitterness wasn’t me and it won’t be me again. I’m going to continue floating through my treatment until it is over and my head will be above water the entire time.

Coda: The same spontaneous emotional release happened to me while I was swimming at the Turtle Bay Resort (we stayed there for the wedding) oceanfront area. It was way more creepy to see a lone 30 year old man with half of his hair falling out and a confused sunburn standing in the water among dozens of small children sobbing his eyes out. It was very Forgetting Sarah Marshall, though I was working to escape different demons. Speaking of that movie, the girls

Turtle Bay, North Shore
Turtle Bay, North Shore

got ready for the wedding in the very same Turtle Bay Resort beach condo that was featured in the movie. neat, right?

#inspiration

It’s been a while, sorry. I haven’t felt inspired to be inspirational… unless you think that complaining, grump expressions or the general feeling of being “over it” is inspirational to you.  I heard that “I” word a lot to describe how I reacted to the cancer and what I did with that reaction, but it always made me feel a little strange.  The only time I ever felt “inspiring” was when I was high as a kite because I was roided to the gills. I didn’t even know where I was half the time but inspiration burst from my face as if it were banana flavored vodka and I were a hazed sorority pledge.  Then I sobered up and got hungover, I was no longer inspired and thus not inspiring.

It’s been over a month since I gave you any updates. A lot has happened, but a lot always happens and quite frankly I’m tired of it. I used to be excited to have something to write about when something weird happened to me, like all of my blood turning green and starting to vibrate, but now I’m just fucking over it.  It’s not funny to me anymore, mostly because I don’t have cancer but still have to keep injecting myself with poison for the next 6 months “just to be safe.” Don’t get me wrong, I’m very into the “better safe than sorry” mentality… but I haven’t had a biopsy since mid-February (which was cancer free) and I’ve had so many complications from treatment since then.  Doesn’t matter, though… we have to stick to the program! We must live and die by the chemo regimen that was designed for somebody much younger than I am (because I have pediatric cancer) that has caused an unusual amount of problems (according to how my nurses react to me) in my body. Gotta stick to it, though! It must be right because it was written down. There is room for minor alterations to make sure that the treatment plan doesn’t kill me (and it has come close to doing so), but we need to stay the course! How else will these drug companies make any money if I don’t?

I’ve had so many complications from chemo that they couldn’t even give me chemo for the entire month of May because the chemo they gave me fucked my body up to the point where I couldn’t receive chemo.  I had so many spinal taps that my central nervous system started to revolt and cause excruciating full body pain and headaches whenever I stood up (which happened the week we moved into our house, so I spent the entire move lying on the floor directing friends and hired hands what to do like a paraplegic symphony conductor) and my liver essentially shut down and stopped metabolizing fat which brought my blood fat levels up 700 times what they should be.  They were the highest levels the hospital had ever seen, and some of the highest levels I could find on the internet. I dangerously close to either having a stroke or pancreatitis, so they had to remove all of my blood, spin it in a centrifuge, remove the fat and then put my blood back into my body… three times in a week.

This is what came out of my blood on the first session. That is 4 quarts of blood fat… all of the nurses were grossed out (which is hard to do):

unnamed

This meant that I had to switch from a “eat whatever you can!” to a “don’t eat anything that you like” diet. Food was my biggest comfort, but of course that’s gone now. Thankfully Liana is a wonderful help when it comes to low fat cooking…

None of these things are symptoms of leukemia, by the way.

After my month off of chemo (and after the dangerous levels of triglycerides were removed from my blood), I felt great. I felt like I used to feel… normal, energetic, not nauseated… it was great. I got a taste of normality and it left me wanting more. Of course as soon as I felt better it was time to start chemo back up again, so here we are. I wake up every morning open my eyes and stay in bed for a few hours fighting off the urge to throw up, then I wake up and eat something (low in fat, of course) and have to take deep breathes to keep my stomach lining from revolting on me, and then sit in my home office and work…which is more difficult than it used to because somewhere around half of my brain cells have died.

Going through weird treatments while in the hospital is one thing, but I’m home now.  I’m working full time, I’m trying to hold on to at least a skeleton of my social life, I’m trying to maintain a relationship, I’ve got to keep up on household chores, I have responsibilities…I’ve transitioned back into a “normal life” while still having this very abnormal shit going on. But hey, at least I get a new bill every day…that’s nice and normal!

Forgive me for the change in attitude, I’m just over it.

I didn’t want to write this; I don’t have anything nice to say. I hope I haven’t unspired anybody.

#Inspiration

It’s been a while, sorry. I haven’t felt inspired to be inspirational… unless you think that complaining, grump expressions or the general feeling of being “over it” is inspirational to you.  I heard that “I” word a lot to describe how I reacted to the cancer and what I did with that reaction, but it always made me feel a little strange.  The only time I ever felt “inspiring” was when I was high as a kite because I was roided to the gills. I didn’t even know where I was half the time but inspiration burst from my face as if it were banana flavored vodka and I were a hazed sorority pledge.  Then I sobered up and got hungover, I was no longer inspired and thus not inspiring.

It’s been over a month since I gave you any updates. A lot has happened, but a lot always happens and quite frankly I’m tired of it. I used to be excited to have something to write about when something weird happened to me, like all of my blood turning green and starting to vibrate, but now I’m just fucking over it.  It’s not funny to me anymore, mostly because I don’t have cancer but still have to keep injecting myself with poison for the next 6 months “just to be safe.” Don’t get me wrong, I’m very into the “better safe than sorry” mentality… but I haven’t had a biopsy since mid-February (which was cancer free) and I’ve had so many complications from treatment since then.  Doesn’t matter, though… we have to stick to the program! We must live and die by the chemo regimen that was designed for somebody much younger than I am (because I have pediatric cancer) that has caused an unusual amount of problems (according to how my nurses react to me) in my body. Gotta stick to it, though! It must be right because it was written down. There is room for minor alterations to make sure that the treatment plan doesn’t kill me (and it has come close to doing so), but we need to stay the course! How else will these drug companies make any money if I don’t?

I’ve had so many complications from chemo that they couldn’t even give me chemo for the entire month of May because the chemo they gave me fucked my body up to the point where I couldn’t receive chemo.  I had so many spinal taps that my central nervous system started to revolt and cause excruciating full body pain and headaches whenever I stood up (which happened the week we moved into our house, so I spent the entire move lying on the floor directing friends and hired hands what to do like a paraplegic symphony conductor) and my liver essentially shut down and stopped metabolizing fat which brought my blood fat levels up 700 times what they should be.  They were the highest levels the hospital had ever seen, and some of the highest levels I could find on the internet. I dangerously close to either having a stroke or pancreatitis, so they had to remove all of my blood, spin it in a centrifuge, remove the fat and then put my blood back into my body… three times in a week.

This is what came out of my blood on the first session. That is 4 quarts of blood fat… all of the nurses were grossed out (which is hard to do):

unnamed

This meant that I had to switch from a “eat whatever you can!” to a “don’t eat anything that you like” diet. Food was my biggest comfort, but of course that’s gone now. Thankfully Liana is a wonderful help when it comes to low fat cooking…

None of these things are symptoms of leukemia, by the way.

After my month off of chemo (and after the dangerous levels of triglycerides were removed from my blood), I felt great. I felt like I used to feel… normal, energetic, not nauseated… it was great. I got a taste of normality and it left me wanting more. Of course as soon as I felt better it was time to start chemo back up again, so here we are. I wake up every morning open my eyes and stay in bed for a few hours fighting off the urge to throw up, then I wake up and eat something (low in fat, of course) and have to take deep breathes to keep my stomach lining from revolting on me, and then sit in my home office and work…which is more difficult than it used to because somewhere around half of my brain cells have died.

Going through weird treatments while in the hospital is one thing, but I’m home now.  I’m working full time, I’m trying to hold on to at least a skeleton of my social life, I’m trying to maintain a relationship, I’ve got to keep up on household chores, I have responsibilities…I’ve transitioned back into a “normal life” while still having this very abnormal shit going on. But hey, at least I get a new bill every day…that’s nice and normal!

Forgive me for the change in attitude, I’m just over it.

I didn’t want to write this; I don’t have anything nice to say. I hope I haven’t unspired anybody.

Funds Were Raised, Funs Were Had, Cancer Was Trolled

Everybody Get’s Leucky, the fundraiser that we threw last Saturday, was a complete success. We were able to raise around three thousand dollars for the Leukemia and Lymphoma Society with the help and support of our friends, family, coworkers and community members. The event went off without a hitch and everybody but me was able to get nice and drunk in the name of Cancer. I was also able to make a lot of people who had no idea what was going on pretty uncomfortable with my inappropriate cancer jokes.

IMG_1951

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Funds Were Raised, Funs Were Had, Cancer Was Trolled

Everybody Get’s Leucky, the fundraiser that we threw last Saturday, was a complete success. We were able to raise around three thousand dollars for the Leukemia and Lymphoma Society with the help and support of our friends, family, coworkers and community members. The event went off without a hitch and everybody but me was able to get nice and drunk in the name of Cancer. I was also able to make a lot of people who had no idea what was going on pretty uncomfortable with my inappropriate cancer jokes.

IMG_1951

Continue reading