A Year Tomorrow...

Tomorrow will be a year since I put all my trust in Dr Peter Scardino and had my prostate removed. What a year it's been! From waking up with a catheter and slightly confused in the recovery room of Memorial Sloan Kettering Cancer Center - and being asked if I have sleep apnia and told I press the button for more pain medication too often - to today when I am well on the way to full recovery, I've learned a lot about prostate cancer, myself and the people around me. I've also made some new friends and found a new purpose (not like the one Steve Martin found in the "The Jerk") for my life.

This past Wednesday I learned that my PSA is still at undetectable levels. Great! I have also been working out for the last two months at a great gym and dropped some of the weight I put on since the surgery. Looking back, it seems my energy level and irritability were higher for at least six months after the surgery. The fact I could not achieve a "workable" erection for that time didn't help! However, the last six months have seen a dramatic change.

About two months ago, my familiy and I moved closer to work to help reduce commuter stress. That move has helped tremendously! My energy levels are higher and I am able to get in the gym three times a week which helps increase my endurance and reduce stress. Eating more healthfully has helped me drop 15 pounds and I am closer to my ideal weight - but still need to lose 10 lbs. I have also found ways to help other men in the wheel house for prostate cancer. The biggest way? Just talk about it and the need for the PSA test!

Through this blog I have become friends some folks with similar challenges and think I've managed to help or at least encourage some. At work, I talk freely to anyone who has questions and have been able to advise men and the families of men in my situation. I've even managed to do some volunteering to help others in the broader population touched by cancer - many with far more devatating complications than I have had to face. Recently, I 've contacted another group "Bat For A Cure" through which I may be able to focus more on helping those candidates for prostate cancer as well as those with the disease.

I write today to let anyone reading this know, that a year out and I am feeling great. That it is essential that men over 45 (or if there is someone in your family who contracted this disease even earlier) be tested with a PSA test and to find out your Gleason scale numbers! Don't let your your doctor say the test doesn't make a difference - it does! If your Gleason scale number is above 2, you should see a Urologist. Please read about the opportunities!

Please write to me if there is anything with whichi can help!

Almost a year....

Wow! Fourth of July 2009 and I am closing in on the end of my first year of recovery and what a year it has been.

After so many fears and hopes, I seem to have stabilized at a slowly improving level of recovery. There have been moments when I actually forget about my disease. But most of the time it's like I am carrying around the corpse of the person I was before my diagnosis of prostate cancer. The desire put on the brave face and answer all questions as positive as possible comes and goes. There are times when people ask how I am when I have to spew the truth about the devastation of a compromised hard on.

The challenges, both emotional and physical, of taking Viagra every day and not fully recovering have left their scars. The tension with my wife that rears it's head every two to three months. The daily confrontation with trying to engineer an erection when I'm running crazy...... and planning on taking the pill two hours after eating........ and not eating for another hour after taking the pill.....and trying to plan sex at a specific time when exhausted after chasing three kids on the weekend or busting my ass trying to get my completely screwed diabetes patient marketing program fixed....all leave me drained and wishing I could just forget about sex. But then my wife must pay too which would probably leave me paying with still another loss...the loss of my marriage.

There are times when I don't know if survival is such a great thing. There are times when I wish I never knew about prostate cancer, and learned when it was to late to do anything. There are times when I want to just stop trying...

But there have been some benefits. I've communicated with several others who are going through the same thing and believe that maybe I helped them just a little. I've heard stories of so many others who are much worse off than me. My insurance and the additional support of a company which helped me navigate the labyrinth that is the medical/insurance relationship have spared me from the financial devastation treatment of this disease can layer on top of the physical and emotional challenges. I have enjoyed being part of my children's lives and seen so much growth and so many accomplishments in the last year. My sons graduating from kindergarten and playing baseball against older kids and holding their own, my daughter who truly began to blossom in her tenth year taking reading so many series of books, embracing performing and gaining the confidence which I think is so critical in ensuring that she be strong enough to choose her own path.

Over the next few years I want to figure out how I can begin to initiate the kind of programs that SusanG. Komen to aid those with breast cancer. To grow awareness of the importance and simplicity of testing, to not only provide funding of research, but for those needing treatment ad unable to afford it. To help men and their families openly discuss a disease which not only has the potential to shred a life but an entire family.

If there is anyone with a suggestion on how to begin this process. I am all ears.

Six Months of 0....

Man, back from so much stuff....

Biggest thing here...we're six months into the post-surgery deal. Dr Scardino is amazing! I have great urinary control and have had sex once, but otherwise things in my life are amazing!

Had the check up and everything is fine -- PSA was zero -- very cool getting to know Dr Scardino and his amazing wife Judith. Makes me feel good to be at a point in my life where I can produce enough for my company that I can spend time with my family and donate time to help others. It makes me feel sooooooo good. I love balance.

Corporate cruise was great. Lotsa work and lotsa fun. Got to know some colleagues better and left the ship friends. Saw the WBC in Puerto Rico. I miss baseball...Such an American sport - both cerebral and physical equally balanced.

Got a cool new camera and here are a few pics...

Six Months In...

Heading in to Memorial Sloan Kettering today for the six month tests to see if my friend prostate cancer has come back. Wow....six months sure goes by fast...The last few weeks have seen some strides actually managed to have sex for the first time since the operation! May be to much information for some, but I am trying to be as transparent and open as I can be on here...Felt AWESOME!!!!!!!

Funny how the little fear of cancer returning sneaks up on you. I was just hanging watching tv and the thought sprouted up in my head...then while driving to work....then at work and each time staying a little longer and delivering a little more anxiety...There's really nothing anyone can say or do to make this stop and most don't even want to explore the thought.. I get the reassuring, "Don't worry about it, I'm sure you're fine..." But I do worry...Thank God for compartmentalization!

Will let all know of the outcome of the tests when I review with Dr Scardino in a few weeks.

Also have made friends with another guy going to Dr Scardino for the same operation....He also seems to be doing very well...

Our search for a new home and efforts to get decent value for this one is in moving ahead....Had an open house last weekend and a parade of reviewers marched through our home critiquing all our stuff...only a couple of nosy folks from the neighborhood were compelled to sneak in...one guy lives two houses away and has never spoken to us, but did stop by to tell lots of folks we are asking way to much...swell guy

Pitchers and Catchers...

Ahhhhhhhhhhhh..... February 13, 2009

Mets pitchers and catchers report to Port St Lucie... The wrestling winds in the northeast signal the beginning of the battle between winter and spring. And boy did we have some winds the last couple of days...

The chill of winter has been displaced by the hope of a new baseball season. The Mets rotation is looking pretty good. The franchise record setting (for blown saves) bullpen has been overhauled and he core is back in place. David Wright is positive as always and saying all the (w)right things. If Jose Reyes can act like a grown up and add a little focus to his unparalleled electrifying abilities, and Luis Castillo can get lost in New Jersey - or Latin America - somewhere, th Mets have a great chance.

I made a big leap into the 21st century this week and actually joined Facebook. Found a group for people with prostate cancer. Some silly hypothesis about losing 61 pounds curing a guys cancer. Not sure if that necessarily works. If everyone who lost 61 pounds conquered their cancer, I think there may be a much higher recovery rate. Oh yeah, and his guy didn't have a diagnosis of cancer - just high one time PSA test - not even a biopsy.

Funny how people ask how you're doin' but don't realy want to hear anything but "great." The fact that I am relatively young and haven't had a hardon in six months, please don't share that much info!

Had a great time a couple of weeks ago courtesy of my brother. Cathy and I and our sons hit the Islander/Devils game. Good news the seats were great! Bad news, the Devils were up 3 nothin at the end of the first period. Good news, the Islanders did score a goal. Oh how the heroes honored by the banners hanging from the rafters above The Coliseum ice would have hung their heads if they'd watched the sorry excuse for a team wearing their jerseys.

Michael and Jack enjoyed their Hulk-themed birthday party. I envy the energy and wreckless abandon of 6 year olds. Jumping at least six feet in the air and landing on their skinny little bottoms on padded inflatable slides to come crashing down in a tangle of limbs to pop up laughing - a birthday party. The smiles shine.

Interesting circle of life stuff in the last two weeks. One colleague, Frank Lupo passed away at age 37 of a massive heart attack in his sleep leaving three young children and a wife who hadn't worked in about 7 years. No need to mention how the similarities between his family and mortality brought some reflective moments before my surgery surging back into my mind and emotional core. That was amplified by the pall hanging over the entire department and awkwardness of trying to compartmentalize the sadness (what an understatement) and go forward. How do you stay positive, or approach others about work when everyone is on the brink of an emotional breakdown.

At the beginning of the circle, another colleague welcomed his second child and first daughter into the world yesterday afternoon. Mom and daughter are well and my friend is practicing his sneer for the future when his daughter starts dating.

Writing and a flashback

The new year's going great! New office, new projects and even a partial erection! Well ..... better than where I was. Is everyone aware of Pandora. I know. My "discovery" of things is often after everyone else has moved on to something even better. But this is a pretty cool website where I get to listen to music I like streamed in to my computer so I can listen in the office. (Another good thing for me this year!)

One thing I've learned to do is not try to force out a disgusting fart. Seems that the prostate must help that superhighway disperse the forces into the right areas. After many failed tries, I can tell you that a small urine patch is very visible in worn out jeans - and not very impressive. Oh yeah, and if you're hanging with five (now almost six) year olds, they call you on it very loudly wherever you are...Sorry about that Shoprite lady....

Interesting getting back in the gym at work. I mention work specifically because if I work out at the gym near home, I wait until I go home to shower. At work at 7:00 when I shower, there are a few other guys around and the look a six inch bright red scar going from my navel to my penis is a little unique. People get a little flustered when I notice and then just explain I had my prostate out to eliminate the cancer I had the joy of confronting a few month ago. There is another reason not to be looking at other guys in the shower....

Not much else going on. I volunteered to help other folks with cancer reach the catharsis of expressing themselves through a pretty cool program at MSKCC. The program's called Visible Ink, and encourages folks to use writing as a way of sorting through a pretty difficult situation. I've been doing that for years! Shit, when I was 16 I remember sitting at a dark black formica-covered bar in my parents' basement with mice running around in the ceiling and Fleetwood Mac on the turntable in the humungo Capehart home entertainment center and filling half my black marble notebook with a single expletive aimed squarely at my parents.

I wrote, because venting my frustration aloud, would have meant a quick trip to either the hospital or dentist cause my father would have beaten my lily white ass. He never was much one for self-control. The wood-filler in the middle of my sister's bedroom door, from when he chased her the 15 feet from the kitchen to her room and meeting the door my sister had wisely closed and locked, put his fist through the door. I don't remember what he told guests when they inquired as to the origin of the hole. But we knew. Lucky it was the door and not one of us...

But I digress..

For me, those notebooks I filled were like having a free analyst. Eventually, thoughts became less monosylabic and my writing improved. I guess since I eventually secured a job as a technical writer and won a few awards even before I had an undergraduate degree. A job which, by the way, helped me gain school credit for accomplishments and saved me three classes - about a semester when you are also working full time.

I hope that helping others to express themselves gives them some of the same perspective it gave me then and still provides...

Holiday Blessings?

What a great holiday season!  Managed to survive.  

Helen appeared in her first big Holiday show playing clarinet in the band and singing in in the choir.  She even had a speaking part in the choir's presentation of some of the hits from Fiddler on the Roof! Grandma and Grandpa turned out for the morning show and me and the boys were there in the evening. Cathy of course was there for both shows.  What a great mom.

The kids got everything they could have wished for and there wasn't one syllable of "what about ...."Great seeing their smiles and excitement as each package was ripped open and attentively disected - sometimes a few hours after opening.

Had a great holiday party with friends and neighbors around, ad there wasn't one intramarital disagreement!  Cathy loves Christmas.  Personally, I like New Years and we had a great mini-party for all the kids as the ball dropped around 9:00 at the Stevenson house.  (Can't let 5 year olds stay up 'til midnight and expect to have a decent New Year's day.)

Having the week between Christmas and New Year's off is a great benefit.  Loved hanging out with Michael (who now insists on being called "Mike"), Jack and Helen.  Took a trip out to a small mountain in the Poconos to introduce the boys to skiing.  The five of us and the Griffie clan met out at Alpine Mountain.  It was empty!  After lessons in the morning, everyone had a blast for the rest of the day.  It was Cathy's first time on skis in just about a decade, and the old moves seemed to come back pretty quickly.  Helen returned to her form of last year in minutes and (as usual) met a friend in the first few minutes on site.  Helen and Lauren skied the beginner slope most of the day on their own while Cathy and I led Mike and Jack down the slope.

Amazing how fast kids catch on.  From having never been on skis before, to barreling down the mountain on their own within three hours. Could not help but laugh as Mike and Jack took turns racing down the hill, struggling to stop and landing either face first or spread eagle at the bottom of the hill.  By the end of the day, Jack and Helen were getting on the lift on their own and even staying on for the entire ride.  Looks like skiing is an option for future vacations as everyone loved the speed and excitement.  Me, I love the peace of the mountain crest and the solitude of cruising down the hill.  The friendship and imbibing at the close of the day doesn't hurt either.

No prostate-related issues, just no progress either.  Becoming more open, even with people who are uncomfortable and would rather just hear how great things are.  While I appreciate not dieing of cancer at 47, it is more than a little difficult to not have an erection for over three months.  A good friend helped me understand that it is okay to admit to myself and others that the side effects suck!  Unfortunately, some like my mother-in-law don't understand and are perplexed when I say so.  I guess at +70 just being alive is a great thing.  At 47, for someone like me, no hard on is a BIG drop in quality of life.

I'm seeing a rehabilitation specialist and it looks like injections might be the next step.  But the literature I am reading says not to expect anything for 12-24 months post-surgery.  Kinda takes the fun outa fooling around and leaves me feeling like less of a man fr a few hours after I realize nothing is happening.  Just writing this I can feel tears starting to build.

Well, that's it for now.  Hoping 2009 treats everyone well.