YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Larry Carl and Cathy live in Virginia USA. He was 52 when he was diagnosed in January, 2009. His initial PSA was 2.9 ng/ml, his Gleason Score was 7 (3+4) and he was staged T1c. His choice of treatment was Radical Prostatectomy. Here is his story.

I don't have much that is positive to say as yet. I'm scheduled for RP surgery June 15th, but I'm having to fight to make myself do it.

Currently I know I'm only doing out of a sense of duty toward my wife and daughter. Duty matters a lot to me but I don't know if that alone will be enough to carry me through this.

I'm not afraid of the dying, or the pain for that matter, I've dealt with both often enough before. But the side effects, now those scare me spitless, so much so I'm not sure I even want to survive the surgery.

I don't know if I'm unique in feeling that way, and I don't like thinking of myself as a coward, but damn it I really hate this!

It seems like other sites I've been to, I even tried the local US TOO group, really don't want to hear "negativity". Which I can understand, so I just keep my mouth shut and soldier on if you know what I mean.

Also, if I hear or read one more woman saying, "it takes a lot more then a working dick to make a man", or the words, ego, machismo, "acting like a little boy", or the whole "women don't really care about impotence and incontinence" bit, I think I'm going burst. Lucky for me my wife is NOT among those women or I would have gone completely nuts by now.

Oh, and the "you'll feel differently once it's over", and the, "you'll be surprised how quickly you get used to it" themes can go take a flying leap as well.

I am sorry that this isn't a positive message, but I don't have anywhere else to say this stuff and for once not saying it seems worse.

I really appreciate the things written here, the Strange Place PDF was great, and I especially like the honesty about the side effects, and how they impact our partners

Later: After receiving many great e-mails and noting that I was repeating myself, I realized that my original story on the site was a bit brief and left out some things that I also need to consider.

First and foremost is that my wife has a very serious level of Multiple Sclerosis. We are lucky in that she is still mobile and can help me get by after the surgery, however that can change at any time and fairly suddenly. Add to that the fact that she is increasingly dependent on me for physical help, which makes taking any additional risk with my life much more difficult.

Second my daughter is a senior at N.Y.U., when she graduates she will be accepting a position in Japan for at least two years. That would mean that if the condition suddenly worsened she would be out of the country for the surgery, and should something go wrong it would be a lot worse for her because she wasn't here.

I know this has to be my decision and ultimately it will be. That said, and I know this all seems terribly dated now days, but I was raised in a family tradition of Duty, Honor, God, Country and Family before self. In this case I would be failing in my duty to my family to not do everything possible to meet their needs for as long as I am able. My grandfather used to call it, "Doing what Honor demands", and my father always used to say to me, "Your Honor can never be taken from you, but you can easily lose it. Just remember you don't have to like it, you just have to do it."

So, as of now, I'm doing it, and not liking it one damn bit. :}

 

UPDATED

June 2009

 

Well, I'm now 10 days out from the surgery, and I doubt I'll have anything more to add until after the surgery.

At my request a second reading of my biopsy was done by an independent lab, that reading showed my Gleason as 3 + 4=7 but upgraded it from 20% to 30%, still one side confined.

I went to my family physician for my annual physical, and other then some moderate cholesterol issues I'm in good shape, except my PSA has increased from 2.9 in Jan. 2009 to 6.9 in May 2009.

There is some minor to moderate damage to my esophagus, likely from chemical exposure back in the 70's, but X-Ray's taken 3 years ago still match the ones taken last week, so I've been cleared for general anesthesia as I expected to be. I've had several surgeries over the years, to repair damage to my body not caused by illness, and this hasn't been an issue before. I really didn't want to have to do this with the epidural method and I'm glad my surgeon doesn't use epidural except as an absolute last resort.

My daughter has been home this week, and we did a combined my birthday her birthday and fathers day thing, which all happen for us in May and June. Her presence has helped remind me of another great reason I'm going through with this. Sadly she has to return to NYC as she has a job waiting there, and college kids jobs just aren't very forthcoming when it comes to taking days off! So, at my insistence she won't be here for the surgery.

My wife Cathy has been spot in knowing how to support ME. She's not the pity party type, her man has to have a pair and she makes no bones about it. She hasn't once said E.D. and incontinence don't matter. I know they don't to her, but she respects that fact that she is not male, and so her opinion about how I should feel doesn't carry any more weight then mine would about a hysterectomy.

The other day Cathy reminded me that, second only to blindness, prostate cancer was always my biggest fear. Somehow I had forgotten that fact, and being reminded of it now is actually a big help. So, as usual, it's a good thing her memory works better then mine. Besides, any guy that actually wants to stay married is well advised to let her have a better memory then you. (GRIN)

My surgeon is Dr. William Morgan of Virginia Urology and he is truly "world class", so I'm lucky to have him and I'm grateful to his entire staff for all they have done. Dr. Morgan believes that his best results, in terms of minimizing the side effects, comes from RP as his sense of touch aids him in ways that he feels robotic can't match.

He has made it clear that robotic makes recovery easier, and that he has a goodly number of such surgeries under his belt, so it's really up to me. For me, recovery time, pain, and rehab are all things I've dealt with in the past and I'd rather play with the best hand he can deal. I'm 100% confident about him getting the cancer, but I still feel like I'm taking two to fill an inside straight, that's one where only time will tell.

The only poker I ever really learned how to play was 5 card stud, and 5 card draw. I did get "liberal" in college and play Draw, Jacks or better to open, an Ace buys you 4, though I'll bet my old man was turning over. He spent a good deal of time teaching me why poker is not a game of chance, and I'll admit this is one hand I'd fold if only I could.

Overall, I think I've got my fears under control and my mindset has improved, though I still can't say that I am anything other then filled with dread. The latest set of tests, with my PSA jumping up to 6.9 from 2.9 just 5 months ago, and the second biopsy reading coming back worse then the first, has made facing this thing down a good bit easier.

The advise, links, and emails from everyone here has been invaluable to me, and I am very grateful to you all. No matter how things go on the 15th, I would especially like to thank Glen for all the information in his story, and all the emails back and forth.

These lines from Dylan Thomas have never meant more to me then they do now.

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

No matter what I will not go gentle!

 

UPDATED

August 2009

 

 

There were some problems with the bowel prep medications that almost kept me from having the procedure on June 15th, but they were resolved in time, though barely. The surgery went very well as far a nerve sparing and continence issues. I now only worry about continence when I'm at the gym, and mostly then only when I'm lifting. I had post operative complications brought on first by morphine, it put my bowels back to sleep, and then by Cipro, which caused extreme joint pain. All in all I was in the hospital for 5 days, 4 of them on ice chips and I.V. only, 9 days without solid foods in all, which was not fun but at least I lost a lot of weight.

The pathology report was very bad. All the tests had been wrong, or I have an unusually fast growing form of the cancer. In either case my prostate was 98% infected, instead of 30% one side confined, and it was in one of my lymph nodes, as well as in the area around the outside of the prostate. I went from a PSA of 2.9, biopsy reading of T1cT2a, Gleason 7, in January of '09, to a T3aN1 Gleason 9 in June of '09. From the numbers if I had waited any longer it would likely have been too late, and my PSA continued to be below 4 right up until the week before surgery, when it went to around 7. The surgeon believes he got all of the cancer, and so far I'm not showing any signs of it growing elsewhere, though that is of course only a matter of time.

Five weeks after surgery my PSA was up to 2.7, and jumped to 3.9 just seven days later. My Doctor initiated Lupron and Casodex immediately.

Being chemically neutered was in my worst fears list. I remember saying to the first doctor, "I'm not sure I want to deal with this at all given that it can end up having you castrated with drugs or surgery". He said and I quote, "no one's going to castrate you chemically or otherwise." That was January, by July I was on Lupron.

So, far the side effects have been manageable, and the saying I've invented for myself is, "I'm going to live through this, THEN I'll decide if I can live with it."

I've made it clear to my wife, family, friends, and medical team, that if I, and ONLY I, decide that I can't live with being a Eunuch, then I reserve the right to go off the drugs. Yes, I know exactly what that means, and I'll let the chips fall where they may IF I can't take living like this in the long term.

Right now I'm on 1,200mg of calcium & 800iu of D3, to fight the bone loss. What's FUNNY is that I've had a kidney stone problem since I was 23, so taking calcium on purpose feels like I'm downing arsenic! The Doc knows this but sees the stones as the lesser of two evils, me I'm not so sure but I'll take his word for it. (If you ever have a blocked stone you will know exactly what I mean.) My fluid intake levels are about maxed, so I'll just have to wait and see.

I also had to change my vitamin & mineral supplements because they have found that too much Selenium can actually aid the cancer.

I should be spending more time in the gym to build bone and muscle mass, and I intend to get back on that horse pretty soon. The early side effects of the Casodex and Lupron hit me very hard so I'm giving myself a little time.

I currently weigh 201 lbs, so I'm on a 1,000 to 1,200 calorie a day diet to fight the weight gain and to get my weight down to under 200, I'm looking for around 185.

There is research that says Lupron becomes less effective at weights over 225 lbs, so I want some distance between me an that mark. I was 250 in April, and hope to hit 185 by Oct. at the latest.

I haven't brought myself to get the pump to fight the penis atrophy, but my doctor wants me on it 3 times a week so I'll likely get one. I found it funny that the insurance company is giving me a hard time about covering it as a medical device, because it can be used as a "sex device". I keep thinking, "Um, HELLO! Eunuch here!" LOL

Just for the hell of it I'm posting on Twitter when ever I notice a new change, or come up with a new issue. I'm using the ID @IEunuch if anyone wants to check them out.

 

Later: Thanks for the link, and that is pretty much exactly why I use the term. I've run into so many men that are now on LHRH and who are in total denial, they are the "I'm the same man I always was this hasn't changed anything", BUT they are also talking or writing about massive weight gain, muscle loss, bone problems, depression, relationship issues, you name it they have got it.

I faced down alcohol 16 years ago, as of last August 2nd, and I make no bones about it, I don't hide it, but I also don't hide behind it either. I don't do denial, and I won't run from reality, I've seen both be deadly. So, I use humor combined with a grain of truth, and while being as honest with myself as I know how, to face adversity, and it works for me. I've lost 50 pounds, and I'm down under 200 for the first time in awhile, I'm exercising, taking the supplements, working with my spouse to meet her sexual needs, which she tried to maintain weren't important but I KNOW her and that's B.S., so I'm training my mind to have "fun" without desire. About the only thing I haven't done is the pump and that's mainly just being ticked at the idiocy of the insurance company, I figure I'll order one this week.

The emotional changes the link talks about I haven't really felt too much of yet, though I do seem to have this strange desire to watch "A Guiding Light" and take up crochet, but I'm fighting it off as best I can. Besides it's football pre-season, American football that is, and so who has time for that, though maybe needle point might be cool, Rosie Grier used to do needle point. I figure as long as I can still get pissed at how bad my team plays, which is VERY bad indeed, I'm cool with the rest.

 

UPDATED

September 2009

 

 

Well, I've now been Lupron for 2 months, so I thought I'd update this a bit. The big surprise for me was at around 3 weeks out I thought, "OK, this is the no desire thing", after I noticed that I wasn't noticing women when I went out. Then at around 6 weeks I realized that was nothing and that NOW I really had to be at zero, then at 8 weeks I had to admit that 6 weeks wasn't zero either. After a lifetime of being very sexually active I had no clue what zero interest might be, I'm not sure that I even know now.

I have pulled my weight down under 190lbs, but I'm still a good 5 pounds from my goal weight. A word to the wise, if you're on Lupron EVERYTHING makes you gain weight! When I hit 189lbs I allowed my self to have a Triple Whopper, a fish sandwich without the bread, fries which I didn't eat all of, and a coke. The rest of the day I had a salad no dressing, and 1 stick of celery with a touch of peanut butter. BANG, my weight jumped 5 full pounds and it took me 3 days to get back off. Note, I diet and I exercise at least a 1/2 hour every day, though I'm still not doing as much lifting as I need or want to.

The hot flashes suck big time and they have made sleeping problematic at best. Worse yet, I have a rare sleep disorder, M.P.S.D don't worry about having never heard of it, it's so rare it doesn't even show up on google [or Bing unless it stands for Membrane Protein Structure Dynamics].

I've noticed that caffeine makes the hot flashes worse, I don't consume alcohol so I can't comment on that, but spicy foods don't seem to bother me. I have also noticed that stress, even mild stress like grit your teeth level frustration, can induces a minor flash.

That's about it for now. I won't see the Doc again until the middle of Nov., so unless I come up with something new to cover I won't update again until after that.

OH, and I started a twitter blog about being on Lupron, my ID is @IEunuch. I've found it useful as a way to get things off my chest, document the process I'm going through, and perhaps be of some value to someone else that is even newer at this then me. Though I'm the first to admit 8 weeks in is pretty dang new [grin]

 

UPDATED

December 2009

 

 

I trimmed the tree tonight, and as I did so I realized how different my life is today then it was just one year ago on Dec. 1st. All of my problems from that night a year ago seem so insignificant tonight.

In the morning I go to see the oncologist, who will then tell me the results of a blood test I took a week ago. It seems so strange that my future hangs on the results of a test that is now a week old, a test that literally a dozen people know the results of, that they already know what I'll be told tomorrow.

The results SHOULD be ok, the drugs SHOULD work, the success rate is almost 100%, but then I SHOULD have been at the absolute earliest portion of stage 1 last June.

I had done it all by the book, there was only 12 months between a clean biopsy in Jan. '08 and the cancerous one in Jan. '09, the cancer SHOULD have been 20% one side confined, text book stage 1, my PSA was still under 4, the MRI's were completely clean, I elected to go through the procedure that had the highest success rate, regardless of how much more difficult it was to recover from or how much more painful that recovery could be.

But, here I am tonight, at stage 3, the odds don't mean a damn thing to me any more. At every step the odds were 99%+ that I was going to be fine, and at every step I was in the 1%. I sincerely hope that by this time tomorrow I'll have finally made the cut and be in that 99%, but I don't expect it anymore.

So, this Christmas every thing we do seems so much more important, all of the things I usually worry about don't mean as much, and I find myself remembering Brandon Lee's line in The Crow,

" Little things used to mean so much to Shelly ... I used to think they were kind of trivial. Believe me--nothing is trivial."

Later: <0.1 PSA, everyone here knows what that means. So, Merry Christmas to me from Dr. Morgan and Va. Urology.

I wanted to take a moment to thank everyone here for helping me get to today. As we all know this is reprieve not a pardon, but I'll take it!

I'm going to be taken off of the Lupron for the next 4 months, my Doctor is in the take you off and put you on when the PSA goes up, school of thought.

While I am of course happy to be off of it for as long as I can, Dr. Morgan made sure that I know that I have to keep in mind that I will be back on it. In some ways that may be more difficult emotionally, and likely physically, then just staying on it would be, but everything must come second to following the treatment plan, regardless of personal cost or pain.

There are several reasons that keeping the focus on combating the disease is critical. As I've said before, up until today I have had the worst possible result at every step, despite the odds or what the test results said should happen.

For me, the difference now is that this is first result I had some opportunity to effect the outcome of. Through diet, exercise, vitamins, minerals, and Casodex & Lupron.

I've torn 60 pounds off of my body in under 5 months, and I'm going to drop 10 more, I've pushed myself to nearly a full hour of calisthenics 6 days a week, and I'm going to add 3 days a week lifting at the gym, and I've pulled myself, literally, up to 96 crunches a day, and I will get to 144, I've lived with the hot flashes, mood swings, and some other side effects I'd just as soon not mention. I'm not saying this to brag, I'm saying it out loud and publicly because if I let up now it will all be for naught.

I've changed my diet, vitamins, minerals, life style and most important of all, attitude, taken the drugs as they were prescribed and followed every order to the letter, because while I accept that in the end the disease will win, I will go down swinging and it will sure as hell know it was in a fight.

 

UPDATED

July 2010

 

 

I went to the onocologist today. My PSA went from 0.9 in March to 13.1 in June, it had never been over 9 before, so I'm back on Lupron. (4 months of being a Eunuch oh joy.)

Nov. 2009 I was <0.1, then in March 2010 I was 0.9, but in June 2010 I was 13.1. I've been off Lupron since Nov. 2009, so I've actually been pretty lucky. But my Doctor says that due to the huge jump in PSA this time, he won't let me have as long a break next time through the cycle.

I also had a bone density test, my results was Osteopenia, -2.2, full Osteoporosis begins at -2.5. "High Probability of Fracture", the report said. I'm currently on 1200mg calcium with Vitamin D, and other supplements, I exercise at least 30 minutes per day, but I'm going to have to increase that by going to the gym for weight training, which might bring the density up a bit.

I haven't really processed the feelings about this cycle yet, but I'm determined to not let the cycle get to me. I've read of some men that find it difficult, even impossible, to deal with the constant rotation between being a Eunuch and being normal. My long break may have made that easier, but I think it is important to be aware of it as an issue and confront it directly. I don't what to end up being one of those that starts to refuse treatment because of this.

Larry's e-mail address is: carlpub@verizon.net