Thursday, March 27, 2014

Did I Ever Tell You I'm Still Alive

Yes kids, I am still here. Gimme Five...I'm Still Alive. The cancer, according to my doctors, is 100% GONE! History! Memorex! A Scar and a memory! Now I am on preventative chemo for 3 months to make sure it doesn't return. Praise Jeebus!

The ostomy I had was Hell, pure and simple. These last few months have had me in the deepest depression of my life. What I had instead of the classic colostomy was the far more Hellish ileostomy. I cannot NOT recommend one of those enough. Here is the medical jargon on such a nightmare since I really can’t explain that well myself:

“An ileostomy is an opening in your belly wall that is made during surgery.
An ileostomy is used to move waste out of the body when the colon or rectum is not working properly.

The word "ileostomy" comes from the words "ileum" and "stoma." Your ileum is the lowest part of your small intestine. "Stoma" means "opening." Your ileum will pass through a stoma after your surgery.”


Here is the link to me nice and legal: http://www.nlm.nih.gov/medlineplus/ency/article/007378.htm

Basically, to keep things nice and gross, a colostomy collects solid waste where an ileostomy collects liquid and liquid will find any flaw in any system it can. In other words, the ileostomy leaks like a sieve. There are few things that compares to waking up covered in liquid shit I can assure you and it does wonders to your psyche.

The depression I fell into as I said before was darker than any I had ever been in before and I have had some pretty dark depressions as anyone who knows me can attest to. I refused to leave my parents’ house for two months because of not knowing when the damn bag was going to leak next. I felt less than human in many ways. There was no sense of security anywhere to be found and the fear that it would never be reversed really weighed on me. It was pure Hell.

To add to the complications, it appears nobody in Miami-Dade who works in medicine knows anything about ileostomies. We (my parents and I) went from nurse to nurse, hospital to hospital, home care to home care in search of just one person who understood and could set up an ileostomy correctly only to return with a leak and a little less self-confidence. In the end, we (my parents and I) figured out how to jury-rig it so I could have a few days before the great flood returned.

Now I have some pain and the chemo sucks, but it is far better than what I have gone through. I am on the mend and going in the right direction. I have gained 10 pounds and my color has returned. Everyone keeps telling me how great I look which is a new Hell for me as I never have responded to compliments well, but I’ll take it compared to where I have been.

I can’t thank my parents enough…all of them. Be it support mentally, financially, or just being there for me to rage against, they have all stepped up far beyond what I thought was possible. My friends too for your concerns. Thank you all.

Tuesday, October 15, 2013

Did I Ever Tell You Something Gross

This one will be slightly gross for the record...

I have to be honest and candid in my chronicle of this experience if I am going to bother writing about it.  My shame is secondary to my recording of this time of my life.   Lucky the experience thus far has destroyed most of my sense of modesty.   Here we go...you have bee warned.

I am quite tired of shitting myself at this point.   A 42 year old man has no business changing his boxers as often as I have been lately.  It seems my window from “I think I have to use the bathroom” to “where is the goddamned bathroom” is basically nil.  I can't even blink in the space between the two and it is getting annoying.  I have even been wearing Depends sporadically just to be safe.   Like I said before lucky I have no shame left.

Urinating is basically the same deal with the slight change of it not wanting to flow when it can.   The poo flows freely while the pee just likes to make itself known while not leaving.   The poo is a guest eager to depart via any opening it can find (prematurely ) while the pee is a guest content to stay and complain about its surroundings.

This probably didn't need to be posted to be honest, but this is a chronicle of what I am going through with this cancer and bowel mishaps are part of the saga.  I am Just shocked at how frequent they are.   I think a newborn has better bowel control at this point than I do.

Sorry to be gross

Still love ya, G-d

The modern day Job.

Thursday, October 10, 2013

Did I Ever Tell You About the Time I Suddenly Stopped Posting for a Month

I know, my faithful reader aka “mom”, that I have not been updating you and I am sorry for that.   As you know, it was a rough month.   And I am personally still amazed at the healing power of denial.  We need to bottle some of this shot,and fast.

“Hi, my name is Kanrei when online, and I have cancer.    The doctors have tried a myriad of drug concoctions on me: I've drank, swallowed, and had injected into me more drugs than a Grateful Dead parking lot pre-show ever saw.    You name it and I've tried it and none of it worked until I gave into the healing power of denial.”

6 weeks of radiation and chemo therapy?   Denial tells me I'm just stressed and it is nothing to worry about.

But what about the second degree radiation burn on your ass...not part of your ass, but ON YOUR ASS?  I've had worse sunburns.  

Lost over 40 pounds in 12 weeks?   Hey, I always needed to drop the pounds.    I've never looked better.

And passing blood instead of stool?   Hemroids.

Yeah, that denial stuff rocks.    But seriously, it has been a ry hard month.   I was put in the hospital a month ago and stayed there for twelve days, during which I had to have three blood transfusions and 24 feeding supplement via IV.    I don't remember much for those twelve days, but I am told I got tired of waiting for death and went a knock, knock, knocking on death’s front door.

And let me tell you, there is no rest being done in any hospital, period.  Every two hours someone is coming in to poke, prod, inject, or check on you.   And those few precious moments between the poking, prodding, injecting, and checking I would be serenaded by the machines I was hooked up to beeping, buzzing, and roaring the time away.

And I personally blame my needing supplemental nutrition directly on the cuisine served.    It is not food y any definition of the word I have ever heard of.  I was literally dying from malnutrition and the last thing the hospital provided was eatable food.   My mother and I actually got into fights over my refusal to eat.    I do remember saying to her “you taste this; if you can swallow it, then I will.”  She did and she couldn't so I didn't have to.   There was a two day window where they accidentally served food, but overall it rejected by the CIA as too cruel to serve. Suspected terrorists.

After twelve days, I was released, but not free.  I was put on 12 hour nutrition supplement via a port hey placed in a main vein.  The purpose of the poet is to save my veins.   I can tell you after 12 days of having blood drawn daily, your veins don't bounce back.   He port saves me lots of painful pricks.

Anyway, as I was saying, I was still on 12 hour supplement, so I was hardly free.    For the next two weeks, every day at 5pm a nurse would come to my parents’ house and plug me in.  The bag of nutrition was placed in a backpack I had to carry and sleep with.    A constant reminder that I was sick that was especially annoying when having to run to the bathroom at night.

I am sure I will complain about the experience again, but I think that is a good enough update for today.

Still love ya G-d.

Tuesday, September 10, 2013

Did I Ever Tell You About That Thing I Just Thought Of?


It is so easy to forget you have cancer; I mean you neither see nor feel it.   The pains I have endured these last few weeks are all centered around treatment.   All the cancer did was make it hard to poo.    It is the treatment making it impossible to stop.  And i am quite tired of changing underwear and bed sheets so often.   I can catch most when I'm awake before they soil the scenery, but when I sleep there are no guards.  The medication opens the gates and the tides are free to flow.    Lucky for me I have no shame left.  Posting this is pretty good proof of that I would say.

My weight is returning.   It was once again a case of my body not liking patches.    It anti-nausea patch was destroying me physically and mentally.   So much so that my doctors wanted to hospitalize for my own health.    Keep in mind this is about 10 weeks away from surgery.  They also wanted to put the port in me this week which would mean an operation.    I, via Rob the Logical, was able to get the main doctor to agree to give me to friday gain weight before we go drastic.

Good news is I took off the dreaded patch on Saturday and by Monday I was eating again.   Just weighted myself and am up to 187.5 now.  I was at 182 and had lost 20 pounds in the last 3 weeks.  

It was Rob, the Logical who pointed out to me the simple truth that, with the exception of the chemo and the radiation, everything else i am currently taking are for relief; be it pain, nausea, gas, constipation, or diarrhea.   If they not doing it for me, i can quit any and every one of them, so find the combo that works.   Seems morphine every 12 hours with a muscle relaxant every 8 and another pain pill as needed does the trick.   I only took one "as needed" pill today.  Now I can enjoy the "I can't believe I ate that" diet like the milkshake my mom, Saint Joan made for me from vanilla ice cream, lactose-free milk, chocolate syrup and a 350 calorie Ensure.   Total caloric overkill and it was awesome!  

The routine is getting old.  Only two more weeks of the following:

6:30am- wake up and eat an egg, then wait 30 minutes before taking chemo

7:00am- take chemo and try to go back to sleep

If I sleep- wake up at noon and get ready for radiation treatment.
If I do 't- do some work from home until radiation.  There isn't much I can do from here, but it is some money.

1:10pm- go to South Miami hospital for radiation.  Do my best to tolerate back pain from tumor pushing on a nerve when I sit.

2:00pm- strip down, get radiated, get probed, get scared, and on Wednesdays I get a massage.   I like Wednesdays.

2:20pm- leave hospital and fail to tolerate back pain from tumor pushing on a nerve when I sit.  Contort into positions that would inspire a new period of Picasso masterpieces.

3:00 pm- get home, take pain meds and go to sleep.

3:20pm- cramps come to visit

3:21pm- cramps seize control

3:22pm- cramps issue demands.

3:23pm- more contortions until a semi-comfortable pose can be reached.

6:00pm- wake up and attempt dinner.  Doing much better now at this part.   I can make a clean plate out of a kids meal finally.

6:30pm- I visit the bathroom on average 20 times a day.  The tumor, in addition to sitting on a nerve, also is setting off the "I gotta go" alarm.   This makes me go so often for little to no gain.  Why do I keep falling for it?  See the first paragraph; when I ignore, the brown will pour.  6:30 is the main showdown.  I lose more than I win.

7:00-9:00pm- this is the part I like.   This is when my parents and I visit and just hang out.  Truly a treasured part that makes having cancer worth it.

9:00pm- drained from the day, I attempt say good night and attempt sleep.

9:00pm-6:30am- sleep 20 and attempt to go 10.   This pattern has recently thankfully change to about sleep 40 and attempt 10,  it real sleep is sill elusive.

So there ya have it. A day in a week in a year in a decade in my life.

Monday, September 02, 2013

Did I Ever Tell You About My I'm In Labor Day Weekend

Now that was a 3 day weekend!   

Did I sleep?  Hell yes I slept.  And slept.  And slept.    

Did I eat?  Hell yes I ate.   Not was much as my doctors want (more on that later), but I ate more than I have in weeks.   

Did I poo?   To quote my niece, I went poopies!   And not the rabbit turds I have grown used to producing, but actual nice solid logs of discarded organic matter and, more importantly, no blood.    Yes, my ass is raw today from wiping and wiping and wiping and it is quite painful, but I'll take it because it means I went poopies!   

Speaking of poopies, I have lost a shit-ton of weight since my birthday.   I was 236 mid-June and am now 190.   Pretty damned good, huh?   Never looked this good before in my life.  The doctors are concerned with the massive drop, but they didn't know me fat.   It is a large number to lose in a short time, but I had the weight to lose and am now actively working on gaining weight ala the Dr Nick diet from early in the Simpsons' run.  

I must consume 2500 per day.  I am advised to drink an ensure with every meal.  Avoid fruit and vegetables.  Avoid anything that produces poo while maximizing calories.   Oh the crap I can eat and how cruel to have no appetite to enjoy it.  Good one G-d.    Still love ya.  

I have been cranky this weekend.   Not sure why.  Sorry to Saint Joan and Rob, the Logical.    As much as I have needed Saint Joan's Virgo overload, I also rely on Rob, the Logical who has the uncanny ability to get past even the thickest walls of Gemini logical bullshit games I can play.   And while I have always known he loved me as his own son,it is often hard to read the stoic and I have seen the true depths of his love for me.   Do t care if you're tired of hearing it, but I could not do this without the combination of our strengths and concerns.  

Tomorrow is the return to radiation and chemo.  Yay?   A return to side effects.  Yay?   Haven't missed those, but September 25th keeps coming closer.   Then six weeks of nothing before stage 2, being the dreaded operation.    Thinking of painting my nose red to see if they get the joke.    

Friday, August 30, 2013

Did I Ever Tell You About How Cancer Fights Back?

Rough freaking week...actually, rough fucking week.  I don't like to curse in print, but sometimes it is the only way to truly express just how fucking rough this fucking week has fucking been, and not just on fucking me either: Saint Joan is having a rough time of things as well.  

First off, Saint Joan breaks her toe.  Hell of a way to start off a week.   As the week progresses, she trumps the broken toe with the cat bite from hades.  Max, her rag doll cutie pie got so into a recent rubbing that he bit her clean to the bone we think.  She is swollen to 3x normal and can't move her thumb.    Mom gets 10 out of 10 for sympathy pains.  

And speaking of sympathy pains, this has been the week the cancer fought back.   Not only has the old pains grown in intensity to a point where there are virtually no more comfortable poses for me to vogue into, but the radiated parts are now starting to demand attention.   They throb and strain and just plain damned well hurt.  Basically, from my thighs to my mid back is in constant and unyielding agony pretty much 24/7.   Amazing what one can put up with.   

Despite the discomfort and pain, I am still in good spirits.  I really miss going to work, but with this pain there is no way I could even drive myself in let alone sit at a desk and focus on work.   My paid days are now over, so I gotta figure out something for money.   I can do some work for. Home and get maybe 10 hours a week.   That and the rent money I am getting for my place may work.   Thank G-d for family.   

Still love ya G-d.