Friday, January 20, 2012

It's been awhile...

Wow...I can't believe how long it has been since I have written on here about my cancer experience. Well I am a little over 3 1/2 of being NED (no evidence of disease). That's such a great feeling! I'm excited and nervous at the same time. Lately I have been meeting other prostate cancer survivors who when they hit their 5th year mark, they ended up with a recurrence. I had focal positive margins with mine and so that has always had me a bit nervous. I know that I'm seeming a bit lax on postings....well not just seeming but very lax. I'm going to make a real concerted effort to get back on here and update regularly what this has been like.

I still am dealing with pain during orgasm at times but as far as the erectile function, that is great! I also didn't end up with any incontinence from my surgery, which I am thrilled about. I have to get a bit more disciplined with my Kegal exercises as those are supposed to be a part of my life every day. I've been lazy with those, mostly because I hate them but I'm going to try to get better with that too.

Basically that's where I am right now...still reading at a less than 0.01 on my PSA and I'm hoping to keep it that way!

Friday, August 21, 2009

Lots of things have happened lately...

Well where do I begin? I guess the most logical is why have I been so slow or lax in my postings? Well I have moved from NYC to Houston, TX to build my nonprofit foundation, "Voices of Survivors" here. It has been such an amazing transition and to be honest, complete transformation. The support here is overwhelming and I can see so many opportunities to grow here and bring more awareness about cancer and 'Survivorship' to everyone.

Last week, I was back in NYC having my three month blood work done and I am so happy to say that my PSA level was less than 0.01! I am 15 months out from my surgery and no sign of cancer! Obviously I am on top of the world! I will still continue my three month tests just to be on the safe side since I had focal positive margins. As far as any incontinence or erectile dysfunction, I am not experiencing either of those in the slightest. I do have a bit of an issue of having to urinate frequently and when I do, oft times the volume is quite low. My oncologist wants me to monitor it/check levels and frequencies as well as monitor my fluid intake to see what's going on before doing a scope. It could just be scar tissue but we are being on the safe side and going to study it.

Tomorrow is a huge day for me and "Voices of Survivors". Tomorrow I leave for Dublin, Ireland as a delegate for the LiveSTRONG Global Cancer Summit. I cannot even put into words how honored and humbled I am by being selected for this. I will publish a huge write up on the event when I return. Definitely check out "Voices of Survivors" as there will be lots of stuff going on there as well as I will be twittering about it. My Twitter name is 'survivors'. Until next time...LiveSTRONG!

Wednesday, June 17, 2009

Lots of Amazing News!!!

Well today was an amazing day. I was invited to be on the "Doctor Radio" show on Sirius/XM radio this afternoon and it was great. The entire focus of the show was Prostate Cancer and believe me, I feel like an expert on it by now! I was on the full hour with both hosts and a doctor/researcher from NYC Medical Center. There were quite a few callers calling in asking specific questions regarding PSA scores and DREs. I was able to share my story of how I was diagnosed and then finally making it through my surgery to where I am now. I am going to be on the show again in August to talk about my nonprofit organization: "Voices of Survivors". It should be a fantastic show and I'll be able to share more about what it is all about then.

So that was today, but what happened last week was truly amazing! As you know, if you follow this blog at all, last November I founded "Voices of Survivors", a nonprofit dedicated to helping all 'Survivors' share their 'voice' and help define 'Survivorship'. Well I was selected as a delegate for the upcoming LiveSTRONG Global Cancer Summit. I will be headed to Dublin, Ireland to share the message of "Voices of Survivors" with the global cancer community. I look forward to meeting and working with other advocates from around the world on this global mission. What an amazing ride this cancer journey has been. Do I wish that I would have never had to have this? Most definitely! Am I taking lemons and making lemonade? Without a doubt! I am living STRONG and will continue to do so each and every day whether cancer comes back or not...nothing will stop me now!

Friday, April 24, 2009

The Results Are In....

Okay so the wait is finally over and I can relax for another three months. I have had no movement in my PSA. I am still registering at less than 0.05 which is okay by me. I wish that they would say less than 0.01 but this is what the machine is calibrated at they said. I guess this is still considered undetectable so as I said before, it is onward and upward! I'm almost a year out since my surgery. My cancerversary date, which I use as my surgery date, is May 12th. I'll go into it with a good feeling in my heart and head. Till next time....

Waiting for My Results

Well yesterday was my latest PSA test after my Robotic Radical Prostatectomy and today is that usual "sick at my stomach" waiting period. I hate this because it truly is like reliving that dreadful day every three months when they first told me that I had cancer. I've said it before and I'll say it again, if I can somehow keep cancer from coming back, I'm actually quite glad that I ended up having this horrible disease. It has made me a better person, given me a complete new perspective and appreciation of life as well as giving me the opportunity to have started my non-profit: "Voices of Survivors" which means more to me than anything that I have ever done in my life.

With all of that said, I sit and wait for my cell phone to ring. I'm obviously hoping for good news and be told that my PSA is undetectable but it is so hard not to sit and expect to hear the worst that being that my PSA is rising. Oh the mental games that we play with ourselves can be quite excruciating but we make it through it. They say that we are given exactly what we can handle but to be honest lately in my life, I have been thrown so many curve balls, I'm oft times questioning that but I guess since I'm still here and not in a loony bin, it may be true. Onwards and upwards and I'll just sit here and wait for my results. I'll post again as soon as I get the call from my doctor.

Thursday, April 9, 2009

It's Been One Year...

Wow...Time has really flown by...well not really, most of the time it seems that this has been the longest year of my life. I guess people really like to just say that saying: "Time has really flown by" for some reason but like I said, not this year. I remember at 4:30 last year on this day I was sitting in a doctor's office whom I had never met and my results were faxed over from my other doctor's assistant before he had the chance to give me my results. I know that this bothered him but it was what it was. When this new doctor picked up the fax, I could see it in his expression, "Crap, I have to tell this guy that he has cancer and I've only talked to him for less than a minute". No matter how many times a doctor has to say this, I think it still has to bother them because they know how much it is going to hurt the patient and their family, he knows the fear that they will feel and he has to help calm them down. He did a pretty good job but I still went out in the hall and broke down crying. I had to pull it together and go back in and talk with him about what I was faced with.

Later that afternoon, my actual doctor called me and apologized that I had to find out that way. He scheduled an appointment for me to go into his office the next day to discuss all of my options and so this blog began. It actually began the day that I was diagnosed: April 9th, 2008. It's been a hell of a year on many levels from personal to business with problems that we have had in the economic markets. My life has been dramatically impacted by all of this in ways that I never could imagine. Through it all, I have found true happiness and strength. I've started a non-profit foundation called "Voices of Survivors" which is dedicated to the exploration of what 'survivorship' means to the individual through the various documentary formats. If you haven't had a chance to check out the website, I highly suggest that you do because the videos are quite powerful as each 'survivor' shares their 'voice' about what it means to them to be a 'survivor'.

This seems like an odd statement to make but if cancer doesn't ever come back, I am glad that I got it because it actually has made me a better person. My life oddly enough is more satisfying now with all that I am doing in the cancer community, especially with "Voices of Survivors". On May 12th, 2010, I will embark on a solo bicycle tour across America following the TransAmerica Bike Trail to meet fellow 'survivors' and have them share their 'voices' with "Voices of Survivors" to help further promote 'survivorship'. This will be a fundraiser for the foundation but also an educational tour. I will document the entire thing on the "Voices of Survivors" website and blog.

So that's about it for where I am now. I'm waiting on my next PSA test which is coming up in a couple of weeks. I'm keeping my fingers crossed that all comes back fine. I'm feeling great. From a sexual functioning perspective, I'm doing great. I've adjusted to the "dry orgasms" and really don't need any Cialis but still take it occasionally just to make sure that all is in proper order for the future. Anything that I can do to help with that, I'm all for it. The only odd thing about orgasms now is sometimes I have a pain in the ass, literally, from muscle contractions or something. I'm not sure what they are and will ask the doctor but I've read that sometimes post radical prostatectomy this happens. From a continence standpoint, I'm good there as well. The post-pissing drip is a bit more than before the surgery which is okay but my underwear are dry throughout the day which is great. I hated wearing those depends when I first got out of surgery for a the first few months. If you have this surgery, make sure that you do your Kegal exercises. They work! Okay...that's a wrap for tonight. I'm off and running.

Monday, March 23, 2009

Catching Up...

Well it has been awhile since I've been back here on my blog to update it but I guess that's what happens post treatment. I'm am now recommitting myself to be better at keeping up with my blog. Since I last wrote, I ended up having a few freak outs due to the large volume of study data that has been released lately on prostate screenings, procedures etc. A little internet knowledge can be quite dangerous as we all know so I try to keep myself in check and talk with friends in the medical research arena to give me better ideas of who is doing the studies etc. Freak outs are at bay now.

I have started to have a new problem in the past few months. This is a problem that I'm not even sure why it is happening. I have started having intense pain in my rectum/pelvic floor after orgasms either during sexual intercourse or masturbation. It doesn't seem to matter. Initially I thought that it was a position that could have caused it but it really doesn't matter. The pain subsides within 5 minutes or so but it is very intense when it happens. I have my next PSA test in a few weeks and I will be discussing this with my oncologist/surgeon then. I probably will write him a letter as well to see what he thinks that it could be.

Of course I have already looked online to see if I could find any clue. It seems that it does happen to some men. One explanation was that there are seminal vesicle remnants left behind. They recommend a coil MRI to see if that is the case. I am dreading that one because it is not a fun test in the slightest. That was what they used when they looked at my prostate post biopsy pre-surgery and I don't want to do it again. If I have to, I will though.

On the erection side, I've been waking up with erections again which is awesome. I am fully functioning and my continence is very good. Every now and then I still deal with a couple of drops leakage if I'm tired and cough or strain but otherwise, I'm a-okay! Well it is late and I must hit the hay but will definitely be better about being on here regularly again.

Friday, January 16, 2009

Doctor's Visit This Week...

So this week I went into my surgeon/oncologists office to talk about my test results from the PSA test. I talked about this some before in my last blog posting but I'll recap here. My first test after surgery I had a PSA of 0.00 and the following was 0.01. I wasn't concerned about that because that was so minimal that it could have been a calibration error and it was still reading as undetectable. Now granted, I'm not a doctor nor am I a lab tech running these tests so I freaked out when I saw it go up even that tiny amount. Well I am reassured that this is nothing and so last week I had my latest PSA results given to me and it was less than 0.05. In my head, I started to panic because the PSA level was rising and I knew that cancer was back. With everything else going on in my life, that was the last thing that I wanted to hear. So I sat with a week of panicking even though the nurse at the doctor's office assured me that this was not bad and that it was still reading as undetectable. I just couldn't understand why it was a higher reading than the last time.

I make my way to the doctor's office this week to discuss this with the doc and he says it is the way that the machine was calibrated and that it wasn't detecting anything below 0.05. I asked why one time it is calibrated for one level of sensitivity and one time it is another. He assured me that I am not be concerned as I am still reading as undetectable which is good. I'm going to go with this and be happy. Having a focal positive margin always keeps me on my toes and I'm less than a year out from my surgery. In fact my surgery was on May 12, 2008 so I'm only 8 months out so far. I can't wait until I hit my 1 year cancerversary! That's all for today.