5 Responses to Home

1. Jack says:

   May 11, 2011 at 4:45 PM

   Just got off the phone with the City of Hope Medical Center. They loved the book and will order.

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2. Jack says:

   May 3, 2011 at 9:28 AM

   Just in from Dr. Bui: “I’ve gotten some rave reviews about your book from patients.

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3. Dave M says:

   April 5, 2011 at 4:34 PM

   Read and thought about your book these past few days and it is an excellent intro to our favorite subject Prostate Cancer. I think many men will find it to be a useful guide to what they are about to experience-if they want to know. I have like you counseled many men these past 5 years who were about to undergo treatment and am amazed how many just want to stay in the dark and quote” I trust my doc”. What I find is they are so scared shitless that they just want to get it over with and don’t really want to pay attention to the issues connected with the surgery itself and then the excruciating post op experience where they discover variations on the themes of impotence and incontinence. What follows below are a few thoughts that come from the different experience I had.

   I interviewed 3 surgeons before picking the head of urology at xxxxx Clinic in Boston, Dr.xxxxxx. My son-in-law at the time was a trauma surgeon resident at N.Y. Presbyterian Hospital and did research for me so I was very clued into what happens in a hospital etc. For example you noted that you had your surgery at 4:30p.m. and I had mine at 3 p.m. He would have recommended first thing in the morning. I ended up in the afternoon because I also picked the anesthesiologist who only happened to be available in the afternoon. Included in the group surgeons I interviewed was an arthroscopic one and I simply decided that because I had a prostate the size of a peach (not a walnut) and a badly mangled bladder I needed someone who could go in and straighten it all out so I picked the head of the department who did the old fashion cut and sew. But and this is an important but the xxxx Hospital is a teaching hospital and the head surgeon can designate one of the residents to actually do the operation while he or she supervises. I specifically asked him to do it himself and he agreed. I don’t think many folks are aware of this caveat.

   One of the things I became aware of very early on was that a tired surgeon, a sloppy surgeon etc,. could easily cut the 2 sets of nerves that control sexuality. In the first 3 interviews I had my wife with me and she took all the notes, wrote them up etc. In my second interview with the surgeon I had picked she and I waited hours to see him and he really couldn’t understand what we were doing there given he never sees patents a second time etc.etc. I told him that I wanted to be sure he saw my wife, told him we had a great sex life and wanted him to know how much I and we would appreciate his sparing those nerves. Guess what-when he came out of the operating room and found my wife first thing he says is “We were able to spare both nerves”. So we won that one.

   But even though he had a sterling record around incontinence he told my wife right off that there were complications and he had to reconstruct my urethra etc. Long story short I am totally urinary incontinent and have no sensation whatsoever when my bladder spasms and I have to go. I tried drugs, Kegels all the time, biofeedback etc and finally had an operation where they placed an artificial urinary sphincter in my scrotum and nothing has worked. So I have a great sex life and have gone through 15,000 depends underwear these past 5 years. From the get go I decided to treat it as a minor issue and it has stayed a minor issue. I tell most folks so they understand why I might bring a little discreet bag to dinner etc.
   Just an aside-it has not stopped me from doing a thing-I really do feel very blessed. I have made 4 bicycle riding trips to Italy these past 4 years and ridden for up to 500 miles on each trip. In addition I have ridden in the Pan Mass Challenge 162 miles in 2 days etc.etc. You just have to make sure your gear included whatever Depends you need. This past fall my 3 brothers and all the wives went to Italy for 3 weeks and I had one suitcase that was nothing but Depends.

   I had no pain whatsoever during or after the surgery-on the East Coast or better yet at the Hospital. They just give you a morphine control and you shoot yourself up whenever you feel pain-in my case it was whenever I even thought I might have pain.

   One of the sights I will never forget is the entire floor in one of the building at The Hospital is devoted to male patients recovering from urological surgeries. There we all are in a large space with our hospital gowns and our “poles with wheels” which held the IV solutions moving in a circle trying to get the bowels moving, pass gas etc. What a sorry sight we were!!!

   Your description of the catheter and managing it is hilarious. We have a great coffee shop a half mile form the house and each day I would get in my baggy clothes and carry a bag with the container in it and walk to the shop looking like a bag lady and have my espresso – not sexy but it got me out an about.
   The major shortcoming I saw in the book was the discussion of post operative sex. First of all again most guys don’t want to talk about it and secondly use it or lose it is a good summary of what can happen. And if you don’t have a good sex life before the operation forget it. Again like you I have a great wife and we experimented with all kinds of stuff and were able to figure it out for us and it’s not only as good as it was before but even better.
   Again a very useful book and a very accurate description of something none of us ever wanted. Be well, David

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4. Joe and MJ Conn says:

   March 9, 2011 at 4:50 PM

   What a great idea to share this, Harvey. We have friends and family we will send this info to as they are facing this same struggle you have had. I echo Claire’s statement … we too are glad you are around to have put it together.

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5. Claire Meade says:

   March 6, 2011 at 7:27 PM

   Woohoo! Glad you’ve been able to get this out here! And even more glad that you are still around to get it done…. Love you!

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