Saturday, December 19, 2009

My Favorite Sound



Check out my cool Xmas/Radiation Advent Calendar! The best thing about it, other than remnants of where Dexter has tried to eat it, is that I'm over the half way point! So far, so good. No major problems or side-effects other than having a bit of a cold at the moment, and a slightly queasy stomach.

One thing about this calendar that a couple of people have mentioned is that I get a couple of holiday breaks; 4 days off in a row for the major holidays. I assume the remaining cancer cells do not know this and I hope they will not take it upon themselves to go nuts while the radiation beam, the techs, and myself take some well deserved time off. Maybe I'll trick them and replicate the 20 second high pitched sound I hear as the machine makes it's seven stops around my body each session! Ha! Gotcha!

Oddly, the moment I decided to give a listen and to try to make my fellow cancer pals crack a smile, I have found myself the only guy in the waiting room. It appears my sessions are the last ones of the day, so most folks have cleared out. There are plenty of women in the other waiting room, but the conversations sound fine without me. You go, girls!

But I have developed a pleasant and fun relationship with the techs that carefully adjust my body so that the laser beams line up just right with the guidance markings and tattoos on my body. We kid around a lot, but not too much. They work hard and are super diligent and I appreciate that a whole lot.

But enough of that..I want to talk about snow!

North Carolina is getting some snow right now (as is much of the mid-Atlantic states - I have seen some photos friends have posted on facebook). What beautiful stuff! Of course in Charlotte, which seemed maddeningly and perpetually on the wrong side of the fine line of either snow or just rain, the snow was not a season long battle to deal with, day in and day out. It was a unique break in the week that meant no school or work, and how lovely and special it was!

As a young adult, I discovered that my most favorite thing regarding snow was the sound it made: No sound at all. Total quiet, especially late at night. I loved going outside to just walk around listening to the crunch of it underneath my feet and then just stopping and listening. Nothing. Stillness. Peace. The world was smothered under a gorgeous white blanket with millions of shiny jewels reflecting the light. So gorgeous and so quiet.

I particularly loved looking up at the streetlights and the areas that they would cast their light upon - the trees, the roads, the bushes - all were now other worldly. And so quiet.

One of my very favorite Game Theory moments took place in the snow. I do not remember the year, but we were playing at the Blind Pig in Ann Arbor. It was at a point of the tour that I just couldn't deal with another slice of pizza for dinner (and actually, a little time by myself was needed too), so I left the club on foot and walked around the neighborhood until I found a little diner. Perfect! At that time I was somewhat of a vegetarian, so I had my usual diner fare of that tour; grilled cheese sandwich, french fries and a coke. (Hey - I just said I was a vegetarian, not a health food nut..) The dinner was fine and it was nice to be alone.

While I was eating it started to snow. Pretty heavily, strong enough to start building up on the streets and ground, and swirl around the streetlights. It was beautiful, and I took my time walking back to the club. As I turned the corner, I was absolutely shocked to see that a line, about half a block long, was waiting to get into the club to see Game Theory! Good heavens...I had never seen this before! I continued my walk on the other side of the street and people started to recognize me and call out my name! I was stunned. I stopped to savor the moment - it could be the only time in my career this would happen (it was), so I stood there and took it all in. The snow, the cold air, my warm belly filled with a grilled cheese sandwich, the crunching sound under my feet, the line of fans, the autographs, a fabulous club and a rocking band...and for that one moment it was all mine. I was at peace.

I would like to ask that those of you that are lucky enough to have snow on the ground tonight, to please steal away a moment for yourself to go outside and find a nice spot to stand in and just take it all in. And while you're at it, give it a listen for me. I'd like that. It's my favorite sound.

I wish you all love and peace this holiday season, and heartfelt thanks for being here.

Love,
Gil

Thursday, November 26, 2009

There Are 8 Million Stories In The Naked City...

...and in the radiation/oncology unit, I'm hearing all of them...

I've just completed my first three radiation sessions (only 30 more to go!), and it's already a grind. Driving back and forth to work, the hospital and home, anxiously monitoring traffic conditions on the computer, and well, driving. I cannot stand being late so of course I end up being early, but that's OK. I can leisurely run up to the cafe upstairs and grab a pretty decent sandwich to take back to work for lunch. From there, I check in and let myself into the locker room to change out of my clothes and into my hospital gown. Since my lower parts are getting basted, I have to remove pants and underwear. Shirts and socks and shoes are OK. It's a great look.

From there, I go into a small waiting room with 3 chairs opposite 3 more chairs. There is room enough for the chosen ones to walk through to either get to the locker room or the radiation room. When it's your time, the techs come and get you. It's an efficient system, with usually not much actual waiting..if one was not so compulsively early!

Part of being a reasonable and good person is to reach out and listen with a sympathetic ear to people that feel the need to tell you their story. Unfortunately, in this case, it is their cancer story. But in this club, you are also asked (and compelled) to tell your cancer story whether you feel like it or not.

My first story was from a kind and gentle man with colorectal cancer. It was his last session of his 6 weeks of radiation treatments. His surgery is coming later. He looked pretty good and had a nice, sweet smile. After he told me his story, I paused, not yet sure of the cancer club protocol, and after a few seconds he asked me what my particular problem was. I told him. It wasn't a natural progression of bonding, but there it was, and we did.

He was called for and went off for his treatment, and another man entered the waiting room. Disheveled and on crutches, he sat next to me and mentioned I must be new here because he had not seen me before. This was his last week of treatments, so I am definitely the new guy in the club.

After he told me the story of his crutches (a 40 year old motorcycle accident), he started telling me of his lung cancer. Since he didn't bother to close the back of his gown, I could plainly see a large radiation sunburn on his back, roughly where his bad lung was. It's actually only half a lung at this point, I learned. The other half was removed 2 and 1/2 years ago.

He then told me of how painful it is to swallow, but he has a numbing liquid, the viscosity of "shampoo", that helps somewhat as long as he pulverises each bite of food he takes.

At this point I started to freak out. Not on the outside - I was listening, commenting and really feeling empathy for this poor guy, but on the inside, deep within my soul I was was screaming; Nooooooooo!!!!

I don't want to hear these stories. I don't want to feel pressured to tell my story. This is my fucking cancer and I want to deal with it on my fucking terms. Leave me the hell alone!

Lung cancer man was then called for and I wished him well. Colorectal cancer guy came out of his session and a very humorless nurse presented him with a certificate of completion! Good Lord. I was wondering if you get a souvenir. The sweet man took it and gave me a quick glance and smile and then asked the nurse, "Does this mean I'm cured?"

I was a bit shocked when she matter of factly replied, "No. It just means you have completed he radiation treatment".

This is when I realized what my purpose is, here in the Cancer Ward. I reached up and touched the man on his shoulder and with a shit eating grin told him and the nurse, "Man...that's a loaded question!"

It worked. Both laughed.

He turned towards me and held out his hand and wished me luck. I returned his handshake with well wishes of my own, and I really meant it. I now understand. While I don't want to be in this club, I am. They don't want to be here, either. We are going through terrible shit, and like it or not we're going through it together. We are going through it for one reason and one reason only - we want to continue living. And what is living, true living, for other than to help one another through the hard times? Those times are here, and now I feel I have place in the cancer ward. Levity. It's not much, but I think it can certainly help my new friends.

So whoever I meet next, be it bladder cancer guy, thyroid cancer guy, or brain cancer guy - nice to meet you. I am prostate cancer guy.

Like I said, there are 8 million stories in this Naked City, and I'm hearing all of them. But with no pants or underwear on.

Monday, November 9, 2009

Inked!


I have wanted a tattoo for most of my adult life, but to this day I just cannot think of what I want the tattoo to be of. I have a few ideas, but eventually I guess I will need to just take the concept to the tattoo artist and let him do his thing. The tattoo you are looking at is indeed a tattoo and it is mine, but this is not what I had in mind! It's a cancer tattoo and I now sport 3 of 'em! One on each hip and one on the front, about 5 inches below my belly button. The tattoo is the little black dot in the center of the drawn on lines. It's purpose is to insure they align and target the radiation accurately every session. Ink! Tribal!

Today, Stacey and I met with the oncologist/radiologist nurse for information about what I can expect during this part of the treatment. He was very nice, soft spoken and earnest, and I couldn't help but notice that was also really good looking. I was sure Stacey was thinking that too, but I just hope she was listening to what he was saying because my mind tends to....wander...when I have to listen to important stuff like this.

He mentioned the most common side effects: burning urination, diarrhea, unhappy skin and tiredness (and you thought we were done with pee/fart & poo talk!). Hopefully the tiredness will not rear it's ugly head well into the treatment. He also gave us pamphlets and support group info (unfortunately, thanks to one of the pamphlets, I learned that my cancer is considered Phase 3, with Phase 4 being the worst. Damn! Printed matter freaks me out!). He showed me the changing rooms and lockers that I will be using everyday, along with I.D protocol which as you can imagine is very important. Don't want someone else's radiation treatment for say...brain cancer!

He also talked about the scheduling, which I was concerned about. It would be best if I could get early mornings or late afternoons to help cut down on my travelling between work (Marin County) and the treatments (Oakland), but he showed me the daily list of radiation treatments this particular center gives and I was astounded. About 5 pages of a list of names in pretty small print. There are a lot of people getting these treatments.

After the orientation, I was off to get a cat scan of my pelvic region. This is to help them map out where they want the radiation to be administered to. I met the 2 techs (that I will definitely get to know over the course of 6 weeks!) and they explained a bit more about all of this.

There was a bag type thing that they positioned under my legs, once I was laying on the cat scan table. After they positioned me, they inflated the bag and it formed a mold of the backs of my legs. This is another method of achieving accuracy in targeting the beams of radiation. Every session it will be put under my legs to hold me in the correct position. Then, with the guidance of laser beams, they started to mark my body with markers. Once they were satisfied with that, they put a drop of ink on the 3 specific areas and poked it into my skin with a quick needle prick.

That was that. Got my tat. Oh yeah...this clinic also provides valet parking. I'm so....Dennis Rodman!

Next Friday I go in for a x-ray and weigh-in. The Monday after that, I begin the radiation. Talk to you then!

Tuesday, November 3, 2009

Next Stop - Radiology!

Well now....I've been feeling absolutely great for the most part these last several weeks, but now it's time to go back to the hospital and start feeling crappy again... Nice!

Next week Phase 546 begins of my cancer treatment: Radiation Therapy! Can you tell how excited I am? Not. Whatever - time to blast those rogue (Palin-like) cancer cells that are still partying around my nether regions. I am so not looking forward to it. Maybe even more than the surgery. That was something finite - an event that would happen and then be over, with allowances for recovery, of course, but in the weeks leading up to it I just sort of accepted it, cussed at it, but didn't really dread it.

Not so with this, though. It just seems so... unrelenting. A radioactive blast everyday, Monday through Friday for about 6 weeks. The possibility of the return of very unattractive side effects. Cumulative wiped out-ness. And a whole bunch of unknown thrown in for good measure. More work hours to be reduced and more paperwork for benefits. More, more, more.

The hormone treatment hasn't been bad, though. The hot flashes are seldom and mild, but my emotional state has fallen to a pretty permanent state of crankiness. I'm a son of a bitch right now, but I guess that's to be expected. Grrrr.

But with all that being said, I will get this done. Not much choice in the matter if I don't want this particular disease to do me in. I will do it with Stacey's help. I will do it with support from my sibs. I will do it with love in my heart from all of my friends, close and distant. But most of all, I will do it because I Am Atomic Man.

So there.

Wednesday, October 14, 2009

Excuse Me????


Well...this is a bit bizarre...Some doctor did some study of guys that had the same procedure as me, and discovered that robotic/laproscopic surgery to remove the prostate is more likely to result in erectile dysfunction and incontinence. Nice. I was told by the head of the urology department and my surgeon the opposite. I believe them. Not this guy. And I'm fine with my decision. Makes sense to me that high magnification and robotically controlled instruments would be much more effective in sparing those gosh darned nerves, then having your belly sliced open and putting your faith in the shaky hands of a hungover surgeon....just kidding.

Really...I'm good. But this is still bizarre.

naysayers of robotically assisted prostate surgery

Saturday, October 3, 2009

(Hot) Flash Report!


Ok - it's been over a week since my Lupron injection and about the only thing to report is general tiredness (at times pretty extreme) and headaches (not too bad). It has made me miss some work hours and the thought of adding radiation treatments to the mix is a bit depressing.

No signs of hot flashes yet, bigger boobs, or my inner girl busting out. I'm on the lookout, though!

I'm just tired.

Lack of male hormones can contribute to loss of muscle mass, so I'm taking calcium supplements and going through some reps with 10 lb. weights. If I get bigger boobs, they will at least be...firm!

Jesus! I think I don't like Led Zeppelin's "Physical Graffiti"!

Sunday, September 20, 2009

A: Don't Pay Her.

Q: How do you make a hormone?

Creepy. My hormone therapy starts this week and I'm feeling creeped out about it. It gets creepier, too. There's just something so unnatural about what my body is getting ready to go through. There could bizarre side effects (most common) and crazy out of this world bizarre side effects (not so common). As mentioned last time, most likely I'll lose even more sex drive and have hot flashes. The hormone therapy expert called me and explained the whole deal to me. She also warned me to not read the uncommon side effects in the literature she sent me. I peeked and wish I hadn't. Trust the experts!

Now, yet another Gil Ray Special Curveball has been thrown at me. While the hormone therapy drug (Lupron) is being used to suppress testosterone level, oddly, upon the initial injection, my body will want to flood itself with testosterone! Not good. So tomorrow I start taking another drug to reduce that event. Fortunately just a total of 6 tablets.

I just get the feeling I'm not going to feel like myself (for better or for worse) for about 6 months. Maybe it will not be so bad - I'm willing to accept tolerable! We'll see.

Weird. Strange. Uncanny.

And definitely creepy.

But I got to keep looking at big picture. If all goes well, I'll be able to look back at these coming 6 months and wonder what all the fuss was about. Ahhh...good times!

Monday, September 14, 2009

Glow Worm


Ok - back to the grind! I almost forgot that I have cancer....

Today, my wife and I had our initial consultation with the Radiation Oncologist in Oakland. My surgery was over 2 months ago, and now it's time to deal with Phase 2 of the cure.

Unfortunately, my PSA's "undetectable" number of .1 will have nothing to do as far as the radiation treatment is concerned. The fact that my Gleason Grade got upgraded to a "7" after my surgery lab-work is the number that is driving the rest of my treatment. Not unexpected, but still a bummer.

I continue to be impressed with each new doctor I see - the oncologist methodically and deliberately recapped my whole prostate history. It's a great sign that my health care providers are all on the same page and I really feel they are doing their best in achieving good results for me. My super smart brother reinforces this, but there was a bit of a curve ball thrown in the mix today, that was briefly mentioned at some consultation, with some doctor, many months ago: hormone therapy!

Here's the deal - later this week I will get an injection of a drug that will suppress my testosterone levels. How dare they! Don't they know that at work I am known (at least by one crazed woman from El Salvador) as El Toro!

Actually, The Bull is humbled and now knows that testosterone can promote prostate cells to grow which in The Bull's case is something to be avoided while they blast away at my prostate...area...with beams of radiation.

The common side effects of this drug are two things: Reduction of sexual libido (at this point I almost burst out laughing), and possible hot flashes similar to what women go through during menopause (at that point, Stacey almost burst out laughing). Fine. Whatever.

2 months after this injection, I will start the radiation therapy. The scary thing is that we know way too many people going through stuff like this, so I was not surprised to learn that my radiation will be roughly one 15 minute session a day (Monday - Friday) for about 6 weeks. 34 sessions. Fuck. But El Toro can handle this. I also learned that my 30 year quest for getting a tattoo will soon be over! While not a very exciting or colorful tat, I will have 4 dots tattooed on various parts of my abdomen to help guide the targeting of the radiation. Cool. Ironic, but cool.


The main side effects of the radiation could be even more bladder/catheter fun, possible rectal bleeding and diarrhea. Since I seem to possess the world's tightest bladder sphincter, retention could very well be in the cards, but again, I am El Toro.

During all of this there could be one or two more injections of the hormone suppressant, with a final dose at the end of the radiation. If all goes as planned, I'll be done in 6 months.

Now I have 3 doctors telling me that even with the creepily consistent...curve balls that seem to keep coming my way, my prognosis is till very good. It's just getting there that sucks, but like I said, at this point, El Toro can deal.

Sunday, August 30, 2009

Point One

Yesterday I had started composing my next post regarding the next stage of my cancer treatment. I've gone back to it today, and I'm finding I just don't really feel like putting a whole lot of effort into it. But this time, it's not frustration holding me back, or broken spirits preventing me from tackling this again. Far from it.

Finally, I got a number that I can live with. It's a very tiny number, too.

.1

That's not a typo, friends. That number means that my PSA level is dang near undetectable.

At this moment, I do not know how this will effect the radiation treatments that were scheduled to start around now. It's possible that I may need less. I will know more once I meet with the oncologist. But I do know that my surgeon is very excited about this number.

So - I'm gonna ride this for a while. I just don't feel like writing about some potential bladder problems I'm experiencing at the moment. I'm going to look at the big picture for a while, and learn to love the very small number that I have earned.

.1

I'm not out of the woods yet, but the woods just got thinned out.

Wednesday, August 12, 2009

Born Under A Really Bad Sign


Probably my first favorite drummer on the whole planet was Ginger Baker of Cream. His fiery red hair, demonic looks, but most importantly, his playing sent me reeling into the world of serious rock drumming. Of course the guy from The Safaris that played Wipe Out, and Dave Clark's fab sounding snare drum caught my ear first, it wasn't until later in the 60's and the advent of psychedelic music that I learned to get deeper inside the music and knew for sure that I wanted to really be a rock drummer.

Ginger was a force. I was infatuated with his double-kick drum set (so much so, I persuaded my mom to order me a second bass drum from Charlotte's Howren Music!), but most importantly, his playing was (actually, still is) so strong, perfectly combining rock chops with jazz, R&B and elements of World Music - specifically African drumming. He really understood and brought forth the herky-jerky world of syncopation. While a reviewer from Rolling Stone (I think!), derided this performance, I think his fab display of syncopation on Creams's version of Born Under A Bad Sign is a thing of beauty. Such a strange beat! I have trouble even trying to understand what the hell he's doing, but it tickles my ears.

In the new issue of Rolling Stone (probably the first one I've bought in about 20 years!), there is a fascinating, yet ultimately disturbing look into Ginger's current
life. What demons! According to the article, he has been chased out of just about every place and country in the world he has lived in. He now lives a bitter and solitary life with a young South African woman (whom he seems to treat like shit), some dogs and his beloved polo horses...OK, bonus points for being an animal lover..

He appears to be addicted to a morphine inhaler, pain pills, anti-depressants and still puts away 3 packs of smokes a day. The townspeople all hate him - he carries a stun gun for protection - and he seems to believe that assassins are after him. Unfortunately, he has had dogs poisoned and horses maimed. He just does not sound like a very pleasant gent!

The weirdest thing that struck me is that even since The Graham Bond Organisation (around 1965), he and Jack Bruce still cannot get on in life and be in the same room together! Bruce approached the other members of Cream regarding another reunion tour that would have brought them millions of dollars, and Baker responded by shouting "There is no way!" and bitterly recounted how that last reunion ended terribly with he and Jack going at it regarding stage volume. They have been doing this for over 40 years! They have hated each other for about 43 years!

Whatever, it's a shame. But it's also sad. I hope Ginger Baker can find peace. It sucks when one of your heroes is a prick.

Friday, July 31, 2009

This Chapter Is Closed!

It's been quite a journey so far. I think I'm going to close this chapter that ended with the operation. Fun things continue to pop up, mostly catheter removals and re-insertions (3!), and on going digestive problems. The catheter is gone! My continence is more or less intact, and erections remain to be seen or dealt with. But I survived. I may start this up again if there are any more unforeseen developments and I will definitely crank it up again once my radiation treatments start. It's my public service duty!

Mostly, the response I have received to this blog has been wonderful. It kept me going in many ways, and it was great therapy for me to write this stuff down. It really was a crazy road I went on and if anyone out there has to do the same at some point in their lives, I hope this will have been of some help. Realistically, I don't think I was the normal case. If I had a nickle for every time a doctor or a nurse said - "It's not uncommon for this to occur, but it's not the normal reaction", I'd be a rich man.Very rich.

I have learned so much in the last couple of months! Some good things and some unsettling things, but it's been quite an education.

A few people found the descriptions too detailed and graphic. Well...it is reality. Unfortunately, practically every issue that popped up was about the penis, bowels, rectum, gas, constipation, bloody urine, erections (and lack thereof) etc......,. But again, that's the reality of prostate surgery. It ain't pretty. Just be glad I didn't write about the day I woke up with a horrifically swollen and disgustingly discolored penis! This phenomenon occurred on a weekend so I had to describe all of this to an advice nurse - "My...that is interesting. I'll call the urologist that's on-call and call you back."
She did, and by luck of the draw it happened to be my urologist! His reply was - "Tell Mr. Ray that this is completely normal, and to not be surprised if it moves down to the scrotum, and that there is no need to take any Valium!". This was special in many ways. I guess it is well known throughout my whole medical organization that I'm a very stressful patient and need to take Valium "as needed". Great. It also would have been nice to have gotten a...heads-up....on the brutalized pecker syndrome. Oops, another graphic story has leaked out!

I have learned that I must be a terrible patient! I swore I was going to be a good one, but failed miserably. My pain tolerance is way lower than I thought it was going to be. I hurt like a mofo! Not from the incisions (I actually only took one Darvocette once we got home), but the stomach cramping, the gas, the constipation and the freaked out bladder were mighty painful. I literally chewed on towels in the bathroom and broke down in tears many times. Then my hyper-stress would kick in and I was a goner. This resulted in many e-mails and calls to my doctor and/or advice nurses. I know I have been through a lot, but while not uncommon, I don't think this was the norm. Stacey hesitated in telling me this, but during our first meeting with the surgeon, he asked me what I thought my pain tolerance was. I told him I thought it was pretty high. At that point, he made eye contact with Stacey and she was shaking her head (out of my line of vision), wordlessly telling him the opposite. She was dead on. Of course.

Nurses are truly a gift to mankind. Doctors get the spotlight and try to cure you, but it's the nurses that can actually help heal you. I love them all. They are empathetic and helpful. They are calming and nice. They all need a raise, which brings up one of the most stunning discoveries I made in the 2 days I spent in the hospital. Due to our current economic woes, there could be a whole lot fewer of them to help patients like me, in need of their comforting and helpful presence and skills.

I actually saw in real-time people's jobs get axed. A young woman made an appointment with Stacey and I to train us on catheter care at home. A few hours after we made the appointment, she called and told us that her job had been eliminated! Not to worry, though - the nurses were more than qualified to teach us, (which they were). Yikes! Several nurses were a bit edgy, wondering if they would be subject to lay-offs that were happening at other hospitals. We saw a room (many times during the 24 hour fart-march) of abandoned equipment with the words "Does Not Work" scrawled on them. Bottom line - less people working means less people with medical insurance. Less people with medical insurance = less people going to doctors and medical centers for treatment and care. I am not smart enough to have any sort of answers for this, but something is very wrong here. These are folks that can cure, heal, take care and comfort us, and now there are fewer of them. It's very basic. Something has to change.

But the most important thing I have learned through all of this, is that love and support are the things that really heal you. I have been blessed with the most wonderful wife in the universe. If it wasn't for Stacey I would probably still be in the hospital trying to pass that damned gas. She has been there every step of the way, from changing my catheter bag to listening to me fall apart. She "talked" our cat into a state of unprecedented good behavior. She missed a lot of work, and always got me to the doctor's office, the hospital and even the Emergency Room on time. She never complained about by foul moods and anxiety. But the thing that really blows me away is this: She's still here.

My brother and sister had my back on all of this, from getting free second opinions from one of the foremost medical centers in the world, to actually checking out the robot that sliced and diced me. They stayed positive, they listened and they encouraged. One of the most important things they did was to convince me to not feel guilty about putting Stacey through all of this by simply stating: "That's what people in a good marriage do."

I am still overwhelmed about the love and good thoughts I got from friends, close and distant. The generosity that has been sent my way has been unbelievable. I feel like I'm the luckiest man in the world. My heart has been enriched, and ultimately that is the thing that will heal me.

Love. Plain and simple.

I am humbled. We will kick this cancer's ass.

Friday, July 24, 2009

I'm Walkin'

Stacey says the first thing that I said after waking up from the surgery was "Alright! I didn't die on the table!" I then told my nurses that I loved them.

I am real hazy as to what was happening after that. Stacey told me that the surgeon told her that it went well, lymph nodes looked clean, I lost very little blood, but unfortunately he couldn't spare one side of the "boner" nerves - apparently there was a soft, sticky part of the gland that they were attached to. With that, my chances of getting an erection has now been reduced from about 60% (the surgeon's record) to about 20%. Ok, fine. I've said it all along - preserving the boner was not my priority, but I wasn't happy that the numbers have now changed.

I remember moving my legs to make sure that I now didn't have "Accidental Clown Leg" and they moved just fine! I don't think I mentioned this earlier, but I had to sign off on a second procedure the surgeon wanted to perform. It's called a lymph node dissection, and what happens is that after the prostate is removed, he wanted to take 10 sample lymph nodes from both sides of my groin area. He would dissect them, get a pathology report and if no cancer was present in these (the most likely ones to initially go bad), we could pretty much rest assured that the cancer has not gotten into my lymphatic system (which we don't want at all!)

But there are risks.....The first risk is just the usual "You might need a lot of blood if I accidentally nick an artery" Ho-hum. But the second risk is much more interesting!
There would be a small chance that he could damage a nerve that CONTROLS THE INWARD MOVEMENT OF MY FREAKIN' LEG!!!!

Ok, let's reassess the risks - incontinence, erection dysfunction, bleeding profusely, and now leg movement....WTF! Ok doc, I'm gonna mull this one over. Which I did, and with the advice of my very smart brother (risk is really small) and further discussion with the surgeon (only one case in the 90 he has performed and that one healed itself within a year) I signed off on it. My buddie Murphy came up with the insanely funny name of this syndrome and I'm really glad I don't have it!

I was rolled into the Recovery Room which consisted of about 10 beds, most of which had those curtain-type things you can pull around for some privacy. In the center of the room were nurse stations. Fortunately, I had a private corner room which actually had a door on it. The door mostly stayed open, though.

Once in the room, I think they let me sleep for a little and attached automatic compression leg...warmers..on each calf. This is to prevent blood clots which are not a good thing to get. They would constrict off and on which was a weird feeling, but it didn't bother me at all. What bothered me was the 24 hour death march the nurses soon forced upon me.

During the surgery, I was on an incline with my head pointing down. It gave the surgeons the best access to my innards. They also pumped my abdomen full of air/gases. Most people have little problem releasing these gases by walking around a little.

Not me. So I had to walk. For about 24 hours. It sucked.

So there I was, soon after major surgery, pushing my IV and catheter around on a pole. I saw patients arrive and leave. I saw about 3 or 4 shifts of nurses come and go. I saw a man that had the same procedure as mine get up, power walk a lap or 2, then dress himself (including putting on his own damn shoes), and leave. There were no windows so I had no idea what time of day or night it was (though there were plenty of clocks, all in military time).

Nothing was leaving my body. My stomach was bloated and distended which hurt my incisions (6 in all - 3 small ones on my left side, 1 on my right along with a drainage tube, and the largest incision underneath my bellybutton.). The nurses administered pain medication when I asked, but unfortunately the good ones (narcotics) were constipating, which is something I really had to avoid due to extensive and delicate needlework holding my vital organs together. I also learned that there is no medicine that can ease the pain of gas. It was all up to me.

Obviously I had plenty of time to get to know some of he nurses. They were all awesome, and they did their best to help me through this. I found the ones that I could joke with, and through all of this we could find reasons to laugh. Of course most of this had to do with my inability to fart, but farts are always funny. My favorite line I heard was "I hope I'm not behind you, when you do pass the gas, Mr. Ray!" It was funny, but also pathetic in a way. I was on this endless and tiring mission to rid myself of this damned gas, walking in circles forever, feeling about 90 years old. God - all I need to do is fart.

Stacey was in and out. She took Jennifer back into San Francisco, then went by our condo to check on Dexter. It was much more pleasant to be on the "Fart Watch Walk" with her by my side.

But as time moved on, it started to get less and less funny. The pain was building, as was my abdomen, as was my stress level. Nothing was working. I received a call from the doctor and I told him that in the past (if I had gas that was a bit stubborn), I would just walk around, massage my belly, do a deep knee bend and let 'er rip. He was not too terribly impressed. I asked him if anything could be put up my rectum to help release the gasses that seemed to be knocking on the door, and he responded that at the moment, my rectal walls were too thin to do anything invasive, without potentially terrible after effects. Keep walking.

I soon received a visit from his assistant. He told me that the doctor had to move my bowels around a lot during the surgery due to some adhesion problems (?) and when bowels are moved around that much, they can get temporarily paralyzed. Sweet.

I found it ironic that I could deal with the pain of stainless steel surgical blades, slicing and dicing my insides, but I couldn't handle the pain of....air.

Keep walking.

I was so exhausted by this point I could barely move, but I trudged around, enviously eyeing patients that were blissfully sleeping. I would wonder what each one's problems were. Some were obvious like he poor man with 2 broken legs, or the lady with an eye bandage. Some were mysterious, like the man that was brought in lying down on his belly. But no one else was walking. Just me, and at times with Stacey by my side.

Suddenly there was a new nurse in our ward, and I told her of my problem. She was a no nonsense type that looked over my chart, and seemed a bit upset that some of the nurses had been giving me morphine. At that point, she just took over. Gave me a drug that let me sleep for a couple of hours. Another nurse brought in a roll away bed for Stacey and we both got some much needed rest.

After that, we continued our walk and finally....I gave birth to Fred the Wonder Fart! Once he appeared, more were to follow. Stacey and I cheered and high fived each other. The nurse that was now on duty congratulated me. I apologized to the sleeping patients, even though they all seemed to have slept through the event(s).

I'm free. Free at last.

Tuesday, July 21, 2009

I Might Have To Do What ?

Ok - I've settled down a bit....

My doctor called me and we talked about why I required my catheter to be put back in. Turns out I have hyper-continence* ! This should not alter the positive outcome of my bladder control that we were all so happy about last Friday. He said that they used to leave catheters in a bit longer, and that I probably just wasn't healed up enough for its removal. He didn't mention why they now like to get them out sooner, but I will just assume it has something to do with the general state of affairs with our current health care system: "Get 'em in, get 'em out. You are healed!"

I am scheduled to get this one out on Thursday, but he told me that I will be trained on self-catheterization if this problem happens again! WTF!

Whatever. My ever shrinking little buddy has taken a lot of abuse as of late, so I'm not too worried about screwing this up if I do need to do it myself. I will assume I should do this sober.

* Stacey swears that at this point, my doctor is just making this stuff up to help settle me down!

Sunday, July 19, 2009

Break Time

I feel the need to step away from all of this for a while.

But I am going to finish this story in it's natural progression because I need to and want to. The response I've gotten from this blog has moved me very much and I want others to discover what it can be like in going through something like this, but for the moment it is consuming me, and frankly, I have had a series of setbacks that have been disheartening and are starting to wear me down.

I'm still pretty damn sure I'm going to have a positive outcome, but I think it's important that you see another side of me - one that just can't find a witty way in describing what's it's like to have to go to the emergency room (as I had to yesterday) to have my catheter put back in.

It seems that I am now ending up on the wrong side of the numbers that my doctors have telling me to expect. Before the surgery, my biopsy gave me a Gleason Grade of 3 + 3 = 6, which translated to an 84% chance that the cancer was contained in my prostate. The pathology report after the surgery upgraded those numbers to 3 + 4 = 7 which means that the cancer was not contained and cancer cells were discovered in my bladder and seminal vesicles. And while these are still the slow growing cancer cells, I will need to have some radiation treatment once my bladder and continence issues have healed and been sorted out. There was some good news though - the lymph nodes were all clean.

We had an idea that something like this was going on right after the surgery when the surgeon told us that there was a soft spot on one side of the prostate and that he could not spare all of the nerves that are responsible for erections. Again, my numbers before the surgery were that I had a 60% chance of erections, now that number is 20%. I am aware that I made a big deal that this would not be a big deal, but the cumulative effect was not a good feeling.

I also had to stay in the hospital for an extra day because I could not expel the gases in my abdomen that had been pumped into me for the procedure. While not uncommon, it is not the norm and required me to basically walk in a loop around the recovery ward for 24 hours directly following the surgery. That is not an easy thing to do.

On Friday, I was delighted when the doctor removed my catheter and discovered that my continence was intact. Phone calls were made, modest celebrations occurred, but by the next day, the pain in voiding my bladder was so intense, the whole thing shut down and I couldn't void at all. To the emergency room we went.

I feel my dignity has been stripped away - I'm fucking sick of dealing with bowels, stool softeners and tubes up my penis and everybody and their mother (including my wife) either looking at my naked body in this condition or dealing with tubes and bags hanging off of me.

I plan on not referring to any of this on facebook anymore. I'm shutting that hospital ward down. If anyone wants to follow me through this, I welcome them here at Po'buckra (damned appropriate name, by the way), and while the positive and wonderful thoughts that came my way there are greatly appreciated and helpful, I want to use that site for things other than a Gil has cancer site. I hope you all understand.

I will get through this. Stacey will get through this. We will all get through this. I love each and everyone of you, but I need some down time.

Love,
Gil

Wednesday, July 15, 2009

Danger! Danger! Will Robinson!


When the alarm clock went off at 3:45am on the morning of my surgery, it didn't feel anything like Christmas morning!

Here it was: The Big Day. A surgeon, a team of anesthesiologists and a robot were going to try to heal me, and I woke up with a splitting headache. A very bad one, too. Great.

With my head pounding, I went into the bathroom and did the enema thing. I'll spare you too much detail in the visuals, but I will say that it did not help my head much (though my butt took it like a champ...). I then had to shower using antibacterial soap. We don't normally keep that stuff around, but we found some stinky hand soap in a pump bottle that would have to do.

The headache was buggin' the crap out of me. At this point I could not take anything for it, including water. I was getting pretty agitated. This is not starting off so well.

We piled into Stacey's car and headed out to Walnut Creek, which is about 25 minutes away in normal traffic. At 4:45 we were surprised that there was as much traffic as there was, but it was not a problem. We found the hospital, parked, and went to the surgery department. We found it strange that no one seemed to be anywhere at the hospital, but found where we needed to be, signed in and sat in the waiting room as Stacey rubbed my neck and shoulders.

Slowly, the hospital started to show signs of life. A person came to us and took us into a large room to prepare for the surgery. I took off all of my clothes, put on the hospital gown and laid down on a bed. A nurse approached and after confirming my name and what was being done to me, put barcoded wristbands on me. She then commenced to shaving my lower abdomen. I was wondering what and how much they were going to shave down there (mostly from the bellybutton down to the top of the pubes - I'm not a very hairy guy). I was a bit surprised she used an electric shaver, and I was very surprised that it tickled me to the point of laughing! Even through my awful headache!

After all of that, I became ground zero for anyone with a needle to stick into my arms. First, a male nurse came to draw blood. I've had a lot of blood drawn through all of this, and his hurt the worst. The dude just sort of slammed the needle into me and started draining my much in demand blood. Next, a very down-to-business nurse came to insert the IV. I've had plenty of those before, but this one really hurt. Stacey said the needle was shockingly large. That poor little port into my life systems was going to get a workout in the next couple of days.

From here on, my memories of what went down may be a little vague. I can't believe it was over a week ago!

The surgeon stopped by and was concerned about my headache. Maybe he thought I was stroking out or something, but no - I was just being me... I'm sure the combination of stress, fasting and dehydration were the evil bastards hurting my head so much. It was at this point Stacey confirmed what I had been saying ever since meeting the surgeon: He looks, speaks and has some of the same body movements as my ex-Game Theory bassist/madman - Gui !

I'm like, totally...doomed.

I was rolled into a hallway outside of the operating room. I believe it was here that I parted with Stacey (I don't remember if Jennifer was there). This was the moment I had been dreading and I was unsure as to how I would deal with it. I mean, it was possible that I would never see her again. I bucked up, shed some tears, kissed her, squeezed her hand and off I went.

I now realized my damned headache may have been a blessing in disguise. It was really hurting, but it also must have distracted me from the reality that I was now about to be put to sleep, and a surgeon and a robot were going to invade my insides and hopefully cure me of cancer without compromising my bladder control, ability to have boners, and perhaps most importantly of all - not giving me Accidental Clown Leg.

As I was rolled into the operating room, I requested to see the Da Vinci. I had seen pictures on the internet (there are also actual YouTube vids up of the machine in action, but I avoided those like the plague), but they really don't do it justice. It's larger than I thought and very sci-fi with spider-like movable arms. Good Lord! I also realized that the surgeon will be nowhere near me during the fancy part of the procedure. Once he pokes enough holes into me to get the instruments in me laproscopically, he will then return to the Da Vinci station and it is from there that he will hopefully use great skill and precision to chop this diseased crap out of me.



Before anything got underway, the surgeon stopped all of the action and talking and sharply announced: "Time out". This was another confirmation that the right guy was getting the right operation by the right people. We all confirmed, I was put to sleep, and the last thing I remember was an oxygen mask being put before my face.

Sunday, July 12, 2009

Prep Schooled

Ok, I think I'm ready to keep going on this sucker. There are plenty of thrills, chills and excitement up ahead!

Prepping for the surgery was sort of a 2 part process. Neither very pleasant to deal with, but deal with you must.

The first part of the prep was pretty creepy and a big fat reality check. I'm going to be different after the surgery. Some of the changes could possibly be permanent, but the odds are that these changes will just be temporary, but they will be there, waiting for me once this stuff has been done to me.

I'm grateful they gave me instructions on all of this. There are a lot of angles to consider. For instance: 10 days after the surgery, I will have my catheter removed. Even though I have been ferociously doing my Kegel exercises (3 sets of 30, holding each one for 3 seconds, per day), I will probably have very little or no bladder control.....yet.

What that means is that last Sunday, Stacey and I had to go shopping, and while drug stores are generally not a very fun place to shop at to begin with, it sucks extra hard when you're buying adult diapers and pads. But there they were! And there we were, rummaging through the different choices and figuring out the correct sizes etc...Good Lord!

I just had to keep taking deep breaths and quietly (at times not so quietly) repeat our "safeword" curse/mantra. We figured it all out, and now we were ready to move on to part 2 of the prep stage: Buying very cruel liquids and enemas that will blow out my bowels til they're clean as a whistle, Homer! This is actually a very important step - if the rectal wall accidently got punctured during the surgery, a cleaned out system could help prevent some very serious damage control.

Ok, off to the stomach aids aisle we went, merrily skipping along and humming sweet tunes. First off - Fleet Enema. No problem, been there, done that. Most men my age have probably dealt with these before if they've dutifully gone in for the sigmoidoscopy that all men should have at 50.

Next is what I affectionately call ass blowout juice. Excuse the graphic and juvenile choice of words, but that's what it does. It's called magnesium citrate and comes in 2 delicious flavors; lemon citrus and a fruity berry flavor. Lemon citrus it was, and if you ever hate someone enough to do this to, it really would make a good mixer for gin.

Shopping complete, we head on home and were delighted to find out that our friend Jennifer will indeed be able to accompany Stacey for the surgery! I eat my last solid foods for quite a while, have a couple of beers, take a valium and go to sleep.

At 10:00 AM the next morning, I drink the bottle of ass-blow. From here on I can have no more solid foods before the surgery. (I'm glad I went over the instructions because I had it in my mind that I was to do this at 10:00pm, which could have been disastrous!) I thought the effect woulda kicked in a bit sooner, but it really ran it's course over several hours. It certainly blows you out, but there's no real uncomfortable cramping. It just....blows it out your ass!

I drank lots of water, had some approved clear jello (why anyone considers this food in any form is beyond me), and some broth. It's strange not to eat for a day. I didn't like it.

The surgery was scheduled for Tuesday morning at 8:00 am, which meant that Stacey, Jennifer and I had to leave Albany around 4:45am so we could be admitted to the hospital at the required time of 5:20am!

Off to sleep we went, excited as little children on Xmas Eve!

Not.

Monday, July 6, 2009

I'm Off To See The Wizard!

Holy cow...tomorrow's the big day! Excuse the haste in this post, but I want to get caught up with all of this.

The Test
I cannot believe that I left out the punch-line in my last post, regarding the psychological test my doctor gave me! Once the 9 question test was completed, he hit a few buttons, and the computer came up with my results:

"Moderately Depressed"

Boy, was I ever disappointed!

But I don't want get too harsh with this doctor, he was just doing his job the way he is supposed to do. I have learned a long time ago that psychological treatment is best handled by psychologists and psychiatrists.

The Surgeon - Stacey and I met the surgeon a couple of weeks ago and had a pretty intense hour-long meeting with him. He explained everything, and as I have quickly found out, doctors and surgeons like spending a lot of time explaining what can go wrong. I suppose they have to, and that's fine, but he was also very optimistic about my outcome due to these 3 things:
1. I'm healthy (except for the cancer, of course..).
2. I'm relatively young.
3. I'm "skinny" (which should come in handy for my bladder control getting back to normal - less weight pushing down on my newly remodeled bladder sphincter).

I made it clear that my priorities are this:
1. To live.
2. Bladder control.
3. The erection thing.

The nerves that control erections are on both sides of the prostate gland. If the gland is smooth and clean, his chances are much better to be able to spare those nerves. If there are cancer cells outside and on the gland, the nerves could be "stuck" to the gland making the job much more difficult. Another factor is this thing called margins. I think that means if the cancer cells are very close to the wall of the gland, there could be problems sparing those nerves.

He spent a lot of time on this, and I tried to tell him that the erection thing really isn't a huge priority with me, but he insisted, telling me that he's actually seen marriages end and men becoming very depressed if there's no more boners.

If those nerves go bye-bye, there are many options that can help get those erections back. The most unsettling one has got to be self injections directly into the penis! "It really doesn't hurt".

Stacey and were both impressed with this guy, and I feel like I'm in good hands. He knows his way around the Da Vinci, and he's younger than I am, which my brother says is a good thing - probably has more experience than someone my age with video games!

The Love
I have been overwhelmed with good wishes ever since I went public with this. Family, friends, musicians, acquaintances, not so friendly friends, people I haven't spoken to in 35 years, and complete strangers have taken the time and effort to wish me well. I cannot believe how fortunate I am to be loved by so many. I thank you all - it is really helping me get through something that I was programmed most of my life to believe would be the absolute worst thing that could ever happen to me.

Boy, was I wrong.

I love you all.

Gil

Saturday, July 4, 2009

Sister Iodine and the Nine Step Plan

The next test was the pelvic scan. At times I kinda glaze-over when the doctors are telling me about all this stuff, but I think this was to look for trouble in lymph node land. Whatever, they said I needed it so I went.

This time I was not in a very entertaining mood. The stress was really taking hold in my fragile little nervous system. Much of it had to do with work. I'm going to be out of commission for 6 weeks! Panic had set in with the powers that be, and I had to quickly write lots of procedures and train a bunch of people that really don't need the extra work load, on how to do my job (which I've done for 26 years!).

Anyway, this particular set of radiologists were all business. I was in no mood to joke around, and I could tell they weren't either. So lets just get it done.

"Mr. Ray - have you ever had an iodine injection?"
No

"Well, we need for you to sign this consent form".
Why?

"Because some people have a bad reaction to it, and it may make your heart stop - but don't worry...we will closely monitor you, and if there is a problem we can roll you right on up to the emergency room."

blink.
Where do I sign?

She told me that I would experience 2 things - first, I would feel a very warm sensation spread throughout my body (...ok), and then I would get a rather strong metallic taste in my mouth, but that would quickly dissipate. (...not so ok).

I laid down on the table and they inserted an IV into my arm (at this point my poor little arms were beginning to look like a junkie's arm) and they took a few scans of my pelvic region without the iodine. Then the tech released the iodine.

I've never injected recreational drugs into anywhere on my body, but I thought that this must be what it feels like. Immediately, a very pleasant warm rush spread throughout my entire body. It was very strange feeling. Seconds later, the metallic taste came into my mouth and all pleasant sensations were now quite gone. It was terrible - sorta like chewing on aluminum foil, but not quite. I have never had this sensation before. Fortunately, it disappeared after about 30 seconds.

They then scanned the region again. The purpose was to get a contrast of what they scanned before. It was over in about 5 minutes. I sat up. Took a deep breath, and went back to work. No drama this time, and no extra pictures were required.

The next day at work it all started to come down on me. I was a wreck. I could barely move a muscle. My body ached and my brain was feeling pretty fried. I just couldn't do much of anything. While I know I do not handle stress well, I wasn't sure if this was just another example of my body dealing with all of this, or if I was getting sick (lots of swine flu warnings at the hospital), or if I was having a bad reaction to the iodine.

I left work, went home and slept. I felt a little better that night, so I went to work the next day. Same thing happened. Something wasn't right.

I called radiology and asked if this was a normal reaction to having iodine injected into one's body and was told that is wasn't, most of it flushes out of the body pretty quickly (instructions were to drink tons of water afterwards - which I did) and if I felt like I was getting sick, I should call my primary care physician.

So I did, and was told I could come in later that afternoon. (I've mentioned this before, but with the economy and unemployment being what it is, I've discovered that fewer people seem to be going to doctors, so appointments are amazingly swift!).

A nurse came in to take my vitals and asked why I was there. I told her my symptoms and that I needed to find out if this was a real physical illness or if I was just having a meltdown. She told me that she was a cancer survivor, and informed me a little bit about her situation. She then said that it's a very normal emotional reaction to have breakdowns dealing with this stuff. Right at that moment I was overwhelmed with her insight and care, and started crying.

She knew. Now, I knew. This is going to be a really tough thing to go through.

I thanked her and she left. At that point I felt there was no longer a need for me to see the doctor, but I stayed. (Why not? I have way surpassed my insurance deductible - it's all free from here, baby!)

The doctor entered and I told him that I thought the nurse and I had figured out what was happening to me, but to please go ahead and check me out. I find it very disturbing that most doctor visits (esp. with primary care doctors) seem to mainly consist of the doctor typing and staring into a computer screen. Uh, hello? Could you please take your eyes off the computer and look my way and maybe even touch, tap, or feel something on my body?

I think I now understand my cat a whole lot better.

He does listen to my heart, taps a few things, but by now he is also getting the picture that my problem is more emotional than physical. I've been there and done that, but here was a new doctor. Glad to meet ya!

He really doesn't know much about my...colorful past with doctors and emotional problems - I was officially diagnosed with "agitated depression" nearly 15 years ago, so I couldn't get too mad at him when he decided to pull up on his computer a 9 question psychological test to give me.

I really thought I had been kidnapped by aliens at this point, but I remained calm and answered the questions as truthfully and as patiently as I could.

The questions were pretty standard ones:
In the last 2 weeks, have you had trouble concentrating at work-
a) not at all
b) some of the time
c) frequently
d) all of the time


It mostly went like like, pretty basic and obvious stuff, but the final question got me. Do you feel you've let your family and loved ones down?

That one hurt. I fell apart.

He handed me some tissues and informed me that he thought it might be a good idea to change up my anti-depressant meds to something with more anxiety reducing effects. I gently, but firmly told him that I trust my psychiatrist (who is outside of this health care organization), and that I thought messing with these drugs - this close to my surgery - may not be a good thing, but I would call her and ask.

The next day he e-mailed me and told me that I was right, we shouldn't change anything right now and to take Valium as needed. Good. And I do!

Wednesday, July 1, 2009

Through A Scanner Darkly


Once the biopsy confirmed the you-know-what, more tests were ordered. The first one was a bone scan. God - just the name gives me the willies. Apparently, if the prostate cancer is gonna spread, it will more than likely go to the bones or the lymph nodes. The thought of cancer being in one's bones is just down-right upsetting to me. Bones! I had a workmate die of prostate cancer cause it got into his...bones. Don't wanna go there at all. Please, Lord - don't let it be in my bones.

It was a 2 step procedure, and fortunately my workplace is just a 15 minute drive to the hospital. That's positive, right? (I keep hearing that keeping a positive attitude with health problems is a good thing - it is required!)

I went to the hospital for step # 1, in which I get an injection of some sort of radioactive whatever in my arm. I don't know if it really is radioactive, but I'm sure this is stuff you don't want to leave under the sink with an easy-open lid on if you got kids or pets. I was extra lucky because an intern was going to be the one administering the poison into my veins!

He was nervous, so I felt the need to help make this guy relax so I went into my washed-up-entertainer-from-the-Catskills mode. The jokes were on, and so was I!

I could hear him and his mentor doctor rummaging around in another room for the correct toxic juice and needles to slam into me. The doctor corrected him verbally a couple of times, so as I was waiting and hearing all of this shit I started entertaining whoever was in the room with me. Before long I actually had a small audience and the jokes were going over well!

The intern came in with the syringe and started to prep my arm for the injection. A couple of false starts - fine - we all gotta start somewhere. I kept running my mouth and at one point I asked the intern if he was OK with me doing my bit. He liked it. Then I thought I'd better ask his doctor-mentor if I should shut-up, and he was fine with the show, so I continued.

But then I felt cold liquid splash onto my arm before the needle went in. At that point I looked and noticed that the poor intern had all sorts of...stains on his lab coat. I settled down, so did he, and the magic medicine entered my vein.

I left and went back to work. In 3 hours I was to come back for the scan. No problem.

The intern was still there, so he had me go to the restroom and make sure my bladder was empty. Fine. He then had me lay down on a table and he and another tech started to set all of the computers, scanners, and whatever. Unfortunately the intern couldn't quite get the table working right. It was supposed to slowly move through the..circular thing as it scanned my bones.

Finally the intern fixed it, and off to scanning I went. It took about 20 minutes for my whole body to go through. Knowing the importance of positive thinking
I imagined a beautiful picture of my fresh and clean and wonderful skeletal system from head to toe. I relaxed my breathing and felt very new-age and beautiful. Not a hot-spot to be found in these bones!

When the scan was done, I stayed on the table as they had a doctor go over the images. Against my better judgement, I looked over at a computer monitor and there it was: My Skeleton! Holy shit! Looks just like a skeleton! Not wanting to look too closely, I turned my head back and waited.

The intern and tech came back in and said "The Doctor would like a couple of different angles of your head and neck."

Ok...no need to panic. Stay calm. Shit.

This time, the scan was just a couple of minutes long. I tried my best to not imagine those dreaded hot spots in my bones, but I don't think I was too successful. All bets are off at this point. Breathe, Gil, breathe.

They then disappeared for another 5 minutes. That's a long 5 minutes if you ask me.

"Mr. Ray - The doctor would like for you to go to X-Ray for a couple of pictures of your head and neck area."

OK. I'm done. It's in my head and neck area. No positive thoughts were within 20 miles from me. Don Rickles has left the building. I was an old, brittle, beaten cancer patient. How do I get the hell out of here?

Somehow I was able to stand still as the 20 year old tech X-Rayed me. I had nothing to say. I left the building and walked to my car. I'm fucked.

Remember the waiting game that doctors put patients through? Well, 4 days later I finally get an e-mail from my doctor: "Your bone scan is fine Mr. Ray. You just have some degenerative arthritis in your neck."

That night I raised a glass (or 4) to arthritis. Probably the only person in the world to do that.

Viva Arthritis.

I think my stress level probably compressed my poor little cancer ridden prostate into a diamond that week. I'm going to be rich!

Sunday, June 28, 2009

The Weight Of The Wait

I was an OK student in school. Mostly B's and C's and a few A's. It felt good when I got the occasional A. It was usually in courses that I actually liked, like political science and art. I was terrible in math, biology and Spanish. I may have gotten a couple of D's in those, but overall I was an average student, I guess.

I had to wait about 5 days for my biopsy report. I've heard that with cancer, you really must get a handle on the waiting part. Tests, appointments, scans, drawn blood, more lab work..you get the picture. As the days went by, I got more anxious of course, but I soon realized that if my particular health group has good news to give, they don't mind sending it in an e-mail. If it's bad news, the doctor will call you at home. Seems right to me, but as each day passed without an e-mail, I was really starting to tweak out a bit. Valium helped to a degree, but by the fifth day not much could settle me down.

As I mentioned earlier, my first name is George, and that is how my doctors know me. But the message on my answering machine is for Gil. I found out later that this was the cause for some of the delay - the doctor thought he was getting a wrong number! After this happened yet again, I wised-up, (remember, I was only an average student), and changed my message to "George, also known as Gil") A real AKA for little ol' me! Word.

The call finally came early one evening, and I could tell it wasn't gonna be good news - I even sort of expected it, but I was not prepared to deal with my final test score, and I scored big, baby! 100%. Of the 12 samples they took, all 12 had cancer in them. I made an A+.

Damn!

I scribbled a few notes on a piece of paper as the Doc was telling me this, and of the different options available in dealing with it. They aren't very good notes, and my mind was vaguely somewhere else at that point. It was like I was watching a movie and suddenly a continuous low bass note was playing in the background. Message heard, loud and clear, Doc...but let's continue this conversation any other time except for right now.

So there I was, at home alone with Dexter. Stacey was just about leaving her work and was car-pooling, so I thought there was no need to call her - she'd be home soon enough. I sat on the couch and cried. I suppose just about everyone who hears this sort of news does the same thing, so I just let it come out. Suddenly I noticed Dexter was at my side, not attacking my head or being bad in any way. He was just sitting with me. He knew, too. Good cat!

OK...this is getting too sad, and I've flayed enough of my inner soul than I'm comfortable with. I'll wrap this section up just by saying that I'm the luckiest man on this planet to have the most amazing support from a perfect wife, family, friends and cat (somewhat...we'll see...). When I get weepy, feeling upset that I'm putting these people through this, these people love me enough to smack me upside the head and tell me - "this is what we're here for!". I think I'm finally getting it.

Damn!...The surgery date (July 7) is time-warping it's way towards me and there's so much...funny shit I've got to write about...I hope I can cover it all, and I'll certainly try before the surgery. For instance:

1. Hilarious hi-jinks of an intern injecting me with some kind of radioactive shit!
2. Bone scan...ambiguity!
3. Late pelvic scan results = an insane questionnaire from my primary care physician!
4. Becoming a member of "The Cancer Cult"!
5. My CD - I Am Atomic Man! was disturbingly prophetic. A robot will help cure me!
6. Potential "Accidental Clown-Leg"!
7. And most unsettling of all: MY SURGEON LOOKS LIKE GUI FROM GAME THEORY!!!!

Great.

Saturday, June 27, 2009

Emotional Wreckskew

The day of the biopsy was probably the first inkling of how I discovered how I would be dealing with all of this. I have a very...delicate yet volatile emotional constitution to begin with and I was wondering how all of the stress and depression would manifest itself. That day I had two responses.

I'm a big believer in bringing levity to grave situations. It's how I deal with stuff. If I can lighten the air just a bit, it really helps me to relax. I discovered this 20 years ago when I suffered a lacerated cornea due to a random street mugging.

Once the ambulance delivered me to SF General, I noticed that the excitement level by the doctors that were attending to me was pretty darn high. Specialists were brought in and it just seemed that the whole hospital was looking at my eyeball with grim determination. It was unsettling!

It got to a point where I just couldn't handle all those furrowed brows. So I said "Stop for a second!". They stopped. I said - "Am I going to die from this?"
They answered "No". I then asked "Is my other eye OK?" They said "Yes". Then I asked them to please lighten up just a tad - they were freaking me out. I know they were just doing their jobs, but the moment I saw a few of those brows loosen up just a hair, I felt more comfortable.

Well, during the prostate biopsy, I have mentioned that I was joking around with the hot babe nurse. She was a good audience, and to some degree, so was the doctor. While I can't think of many things that are as serious as a biopsy looking for cancer in one's body parts, it can just get to be too much!

Once the work was done, the nurse took me back into the waiting room where Stacey was. As I walked towards my wife, the nurse said "He did great! I've been doing this for 5 years and I have never had a better patient for this procedure than Mr. Ray!"

And then something very strange happened - tears filled my eyes. For reasons I'm not completely sure of yet, I thought that was the absolute sweetest and most touching thing in the world for that nurse to say. Maybe it's as simple as me wanting my caretakers to really...care about me. I just don't know.

The second set of tears came about 10 minutes later as we were in the car driving home. I looked at Stacey and told her that this felt like the journey has now officially begun. I didn't need the biopsy results. I knew I had cancer and I was overcome with sorrow that I would be putting my loved ones through all of this. And this is something a little bit of levity cannot lighten up.

Until I found a safe-word!

It didn't take long for me to come up with some sort of ridiculous way to express how fucked up all of this is. When it gets rough for me, most of the time some pressure can be relieved by me shouting out a very specific set of curse words! No need to share them here, but they are indeed some very bad words...

And they make us smile.

Saturday, June 20, 2009

Ahh....Maui....



God, I wish the biopsy was as dramatic as Alien's mouth ripping through my rectal wall, tearing out chunks of my poor prostate as Howlin' Wolf belted out Back Door Man into my ears...but it wasn't like that at all. Really.



After my second PSA test result came back high, my doctor told me I would now be seeing an Urologist. As it turned out, he is actually the head of the department of this medical group's Northern California district. Hmmm..my eyebrow raised a bit wondering if there was any particular reason why I would be referred to the department head but ultimately decided it certainly couldn't hurt!

A few days later I got a phone call from the Urologist telling me that the numbers (here we go again..) tell him that I need to get a biopsy. At that point I think my brain took me on a nice little visual vacation to Maui, and I remained calm, even when he told me the procedure would be relatively quick, a bit..uncomfortable (I've discovered that doctors use that description often), and that it involves needles in the rectum.

Come again, doc?

Fortunately, I already had a pretty good idea as to what I would be going through because a co-worker went through all of this about 4 years ago. But it does involve two things that can make men mighty uncomfortable: penetration up the butt, and the added excitement of introducing needles into the mix!

I know a lot of men that just absolutely cannot even talk about a simple prostate exam. The thought of a doctor's finger going in there can make a lot of guys very uptight, and in some cases, even...angry. Maybe it's because I've had a lot of exams of this nature, but it just doesn't bother me one bit. I've had women doctors do this, and of course men doctors. I guess the embarrassment factor ramps up a teeny bit with a woman doctor, but it's really no big deal.

Maybe it's as simple as the fact that I'm an artist, a rock musician, and I absolutely adored David Bowie and Alice Cooper! I'm culturally hip (in a 70's way!), and penetration down there should be not only tolerated, but..celebrated! Yes! Super sensitive progressive bi-sexual acceptance! I'm down with that!

;-)

That sounds full of shit, and by no means am I relating medical procedures in the butt to an act of sexuality (though I've seen pictures...), but honestly, the men I've seen turn the whitest with just a mention of a prostate exam are generally not involved in the arts in any way. Such philistines!

And then there's the thought of needles. Needles can make any type of person wig out, but I'm fine with those, too. (while I like a few of the Velvet Underground's songs, I don't think there's a cultural discovery to make here...)

Of course I did no further research on the procedure, I just went and did it. Stacey came along for support, and while I don't remember me being too freaked out about it, I just wanted her to be there once the deed was done.

The nurse lead me into the room and I immediately started to joke a bit with her. "Gosh! I'm so excited! I can't wait!" She said "Really?" I said "Just kidding." At that point the all important levity factor was in place, and as long as I can just bring a smile out of a lab worker, nurse (hot or not) or a doctor, I find that this puts me at ease and hopefully the folks doing the work at ease.

This is exactly what happened, as I laid on my side, butt exposed. Of course, as I have discovered over the years, there is a 90% chance that the doctor's aide or nurse will be female, young, pretty and hot. Never fails.

Digital exam - been there, done that. Bring it on, Doc. About 1 minute.

Ultrasound tube goes in - this is a camera not nearly as big as a sigmoidoscopy tube -we'll say 2 fingers wide. This is so the doctor can get an image of the prostate which is surprisingly not very far in. I believe this stayed in during the whole time. No big deal at all.

After he's checked out the image (which I could've seen had I wished, but since I am in fact me, I opted out of looking at the screen. I do this at any procedure that shows an image of my insides. I just don't want to see. If there's something abnormal, I'll freak out. If it's fine, I can then imagine what it would look like if it wasn't fine.

Next came the 4 (!) injections of a Novocaine - type medicine that is to help numb the areas that the biopsy will take place. (note: for those of you that do not know where the prostate gland is situated, it's on the outside of the rectal wall, surrounded by a lot of very important stuff that's extremely difficult to get to). He mentioned that it's just like getting Novocaine at the dentist. (uh...not really, doc!) He said I will mainly feel pressure, possibly feel that I need to pee (but not to worry - there's plenty of pads under me), and a little sting. And guess what? That is exactly what it was like. I told him at that point he was good. He responded by agreeing, and that he's done hundreds of these. Suddenly I was at ease with this doctor and we actually carried on a conversation during the scariest part, the biopsy itself.

I purposely avoided seeing what the biopsy instrument looked like, and frankly, I still don't know, so nothing to report here. During the procedure, I didn't notice any sensation of anything else being in me aside from the ultrasound tube. Using the image on the monitor, he took 12 samples, by needles, from 12 specific locations on the gland. This is called mapping. Each...sample felt like a bit of pressure, a small sting, and a click that sounded a bit like of a small staple gun. It went rather quickly, but after the 3rd one I said "Only 9 more to go, Doc?" He responded with "Are you counting?" "You bet, Doc" At that point he started to talk about the sound quality of vinyl vs Cds, and before I knew it he said "Ok, last one." He's good, alright. Really good.

I then was told to sit up slowly, some men feel faint after the procedure (wimps). I sat up feeling fine and took a deep breath of air and exhaled slowly. He asked if I was ok, and I told him that I was just relaxing for the first time in about 2 weeks!

Total time on the table: 10 minutes. I've had way worse times just getting my teeth cleaned!

One of the weirder preparations for this procedure was to "arrive with a full bladder". WTF? Turns out that right after the biopsy, he had me pee into a cup to make sure I wasn't bleeding, though I should expect "some discoloration" over the next few days.

Another thing to expect following a prostate biopsy is probably the most mind-blowing thing so far...Now, this does make me squeamish and I find no need for details, but 12 puncture wounds in a prostate gland result in blood getting in the prostate gland.

I'll let your own imagination fill in the blanks as to how one goes about getting that blood out of the prostate gland.

Ah....I bet Maui is beautiful this time of year...

Thursday, June 18, 2009

Hysterical, Historical, Hysteria!

There are 2 things that I would like to discuss at this point. First, I have a colorful history of a psychotic fear of cancer. During the 80's and through much of the 90's, I must have spent thousands of dollars going to see multitudes of doctors over any type of abnormality I could find in or on my body. Why is there a lump on the right side and not one on the left? (I was a real stickler for physiological symmetry..) What is that sharp stinging pain in my side that never gets worse, but never goes away? Why am I peeing so much? Why have the glands in my neck felt swollen for a year and a half? Why am I running to the book store and pouring over medical books, desperately trying to diagnose what is wrong with me? (I REALLY think that is a terrible idea for people like me. If you can see a picture of it, you can now see a picture of it inside your own body...not good!)

This lead to some pretty unhappy moments that ran it's course through two marriages. It also, (fortunately), lead me to some very extensive psychotherapy with a great psychologist, and it also helped me find the best doctor on this planet for handling me. Both are women, (both retired now), but these people really stuck with me and were not afraid to bitch-slap me in my weakest and whiniest moments. Tough love was the prescription, and they were not afraid to dole it out.

I found out a lot about myself, and I don't think cancer itself is what I feared. I believe most of my agony was rooted in fear of separation, and stuff like that. This is stating it all very simply, but it's really about as far I want to go with it here.

But, man - all those doctors were bound to have given me some great quotes over the years!

"Mr. Ray - those are nice, rubbery testicles!"

"George.." (most of my doctors called me by my first name, I never thought that I would need to get on a nickname basis with them!)..."if you were having the symptoms of pancreatic cancer, there wouldn't be much we could do for you, anyway."

And my favorite: "George...I'm not God or anything, but I don't think you have cancer."

The second thing I'm a bit obsessed with is medical irony. Hate it. It can manifest itself in my thoughts on a daily basis. Weird...he was a vegetarian, who would have thought colon cancer would have done him in? He seems so energetic and funny, who would have thought he suffered from depression? He had such beautiful blue eyes, too bad he's missing most of the iris in his left one due to a street mugging!

And while I'm sure smoking and drinking may indeed contribute to prostate cancer (I assume - I also have a phobia about learning about things that are going wrong in my body!), I find it ironic that prostate cancer is the one I got.

But the ultimate irony (as pointed out by one of my sibs) is this: I have dreaded cancer all of my adult life and I have finally gotten it.

But it's one that ain't gonna kill me.

Monday, June 15, 2009

PSA Squared


PSA - prostate-specific antigen
PSA - public service announcement

Here's how this whole predicament started for me. Unfortunately, all of this is about stuff that many people (including myself) find embarrassing and uncomfortable to talk about because it's about down there, but hell - I'm 52 years old and I should just get over it. Jesus! We're all adults here...

Anyway, once it was confirmed that I had prostate cancer, and after I told my wife and siblings, I told a few of my friends and workmates personally. I was surprised as to how hard that was to do. It's a heavy thing to lay on someone, but the concern and love I got back was very comforting. There are 2 Hispanic girls at work that speak very little English, but they are both hard workers (and extremely cute and tiny!), but we have never really hung out together - just worked. When I told them what was going on, they both started crying and hugged me tightly. Of course that got me crying, and one of them looked up into my face and said in broken English: "I love you, Gilberto". Stunned, I asked her if she still loved me, even when I get mad and kick warehouse carts across the aisle? She said: "I love you all of the time, Gilberto." That could be the most memorable and touching words I could have ever imagined. I love them, too. Stuff like that is already making this whole deal a hell of a lot easier to deal with.

But I digress from the Public Service Announcement part of this post...

On a couple of occasions, guy friends, around my age and after wishing me well, immediately wanted to know: "Jesus Christ! What are the symptoms? What should I be looking for?"

Well, in my case, look for....less.

About a year ago, I started to notice that....Hmmm...let's say...uh...that the factory was up and running...but for some reason...shipping..seems to be getting... less and less.....product...out of the shipping doors...

God, that is so lame...it's just medical stuff - lemme try again: Ummm - less..you know..stuff came out of my..you know what...when I...did that.

Screw it. Less semen.

There - I said it. Tougher than I thought. But I think you get the idea. It was a gradual drop-off, and I just figured that age was taking it's toll on me. After all, my jowls, my ears, my saggy monkey butt have all succumbed to gravity's pull. I'm just not the teenage stud that I used to be. (I should also note that over the past few months I have lost about 10 lbs. - my weight fluctuates all the time, and I thought that the ultra-stress of the last year probably contributed to it and it probably did. I have no idea if this is the result of prostate cancer).

After about 5 months of this, I told myself that I was about due for a physical anyway, I'll just let the doctor know what's going on. Next thing I knew, it was a year later and the problem was getting worse. No other symptoms at all. Just by chance, I got a letter from my medical group informing me that it was time for an annual blood test and physical, so I went and had my blood work done and made an appointment for a physical with my doctor.

I had the lab work done about a week before my physical was scheduled. In this area my medical group is very efficient - within 24 hours they e-mailed me the test results, but I was perplexed by the fact that there were not many..categories on the report. The usual suspects were there - cholesterol (controlled and fine), blood sugar levels (actually better since I cut back on my cola addiction) and a couple of things that I didn't know what they were. But there were 2 important omissions. I'm always worried about my liver due to my past history of extreme Tylenol intake, evil cholesterol drugs and the fact that I love my beer. Nada. There was also no obvious PSA numbers. Christ, what kind of lab is this? This is lame!

The next day, on a Saturday, I got call from my doctor. Weird! I couldn't get to the phone in time to pick-up, but he left a doozy of a message: "your PSA levels are in the gray area. They should be between 0 - 4, but yours is 6.2. False positives are pretty common, but I'd like you to get re-tested in about 4 weeks. We can talk about this at your physical later this week."

And that was that. Here we go.