Update to my story dtd 30 Nov 05

[size=16] 30 November 2005[/size]
I’ve had four follow-up CT scans and so far all is clear. Although my first follow-up in August 2004 had me holding my breath for the next three months, as I had a newly enlarged lymph node on that scan. Dr. El-Galley (my surgeon) told me it very well could be enlarged because of the surgery alone, but if there was an increase in size on the next scan three months from then we’d do a biopsy. Fortunately there was no increase in size on the CT in November 2004, and my next follow-up would be six months down the road. In my initial write up I mentioned my being incontinent and that I thought I had perhaps found a solution to the problem, it was because I had been searching the Internet with regard to women with orthotopic neobladers who were also incontinent. I couldn’t find anything written specifically about my situation, there wasn’t anything I could find from a patients’ perspective. I decided to look for information about normal voiding in females, and this is when I found an article that explained different factors which make a woman continent. The article comes from the magazine Contemporary OB/GYN October 1998 and is titled IMPACT OF FEMALE PELVIC ANATOMY ON STRESS URINARY INCONTINENCE by DRs Gary Leach and Francois Haab. There was a sentence in this article that put me on my path to being dry that very same day, "The three components of the intrinsic uretheral closure continence mechanism are (1) the mucosal seal effect of the urethra (2) a competent bladder neck, and (3) a functional urethral sphincter". The descriptions that followed in the next paragraph were regarding the mucosal seal and the words used basically were these,’the estrogen enriched mucosal lining of the urethra. What came to my mind first was that I had been asked to stop my PremPro prior to surgery (about three weeks prior is when I stopped), and my knowing that made me think that perhaps the estrogen in my HRT might help in some way. On 10 April Dr. El-Galley had called me because he knew I was upset at having to wait three weeks to be seen in the Continence Clinic at Kirklin Clinic, we spoke for quite some time regarding my situation and he tried to encourage me by telling me that things would improve. He also reminded me that he told me prior to surgery that I could expect some incontinence, to which my comment was, "There’s a big difference between ‘some incontinence’ and being totally wet all the time. We both laughed a little, although I’m not sure Dr. El-Galley thought what I said was funny. During that phone conversation I mentioned to him the article I had found and what it said about estrogen enriched lining of the urethra and did he think it might help for me to try the PremPro, and his comment was that he didn’t believe it would make any difference. Later that day I read the article again and thought on it some more and decided it wouldn’t hurt for me to try it, and so I took one of my PremPro that very afternoon. That night when I got up to empty my bladder, instead of it emptying all the way to the commode I actually made it with no leaks, emptying my bladder and returning to bed. The same thing happened the second and third trips to the bathroom that night, but I wasn’t sure that one pill would work that fast so I was skeptical at that point. The second night I had the same experience with all three trips to empty my bladder during the night, but the third and fourth nights were down hill and the fifth day I was totally wet again. I decided to try another PremPro and so on 14 April I took a second one and the same thing happened in exactly the same way. The first two nights I was dry each time I got up to empty my bladder, the third and fourth nights were not so successful and the fifth day was a total mess again. After discussing it with both my Primary Care Physician, Dr. Mark LeJeune and my surgeon Dr. Rizk El-Galley, they both said that if it helped it was fine with them if I used it for that purpose. I did however change from the PremPro to Premarin, and using the estrogen to help with my incontinence did work mostly at night, although there was some carry over success during the day as well. At my first visit with the Continence Clinic Lisa informed me that estrogen doesn’t work that way nor that fast, but I told her that it worked that way for me and I was going to continue using it. At my second appointment (1 June 2004) with Lisa I asked about using estrogen vaginally, and she said that would be all right and she wrote a prescription and gave me specific directions as to how much to use. I followed her instructions the first night and for some reason the second night after reading the package insert about dosage I increased the amount of cream I used. From that point on I was mostly dry day and night and my success was due to my having used the estrogens both oral and vaginally. I still continued the pelvic floor muscle exercises that my surgeon first told me to do and additionally the Continence Clinic’s description and teaching with the use of biofeedback. The C.C. (Lisa) suggested I purchase this product meant to help me with my pelvic floor muscle exercises by giving me a reading with regard to my muscle strength. When I first started using this product I had difficulty getting a reading on its monitor, and so I contacted to manufactureer through their web site. A very wonderful woman, Dot (Dorothy Smith RN,MS,CWOCN,FAAN), started communicating with me regarding my use of their product and my medical history and the reason behind my needing to use this PFM exercise trainer. We started our emails back and forth just prior to Mother’s Day 2004, and she was most certainly a gift to me from God. She helped me over some very rough times over the next few months, and it amazes me how many emails we sent back and forth to each other. Just recently I was fortunate to be able to meet Dot face to face, my husband and I were driving from Birmingham Alabama to Gettysburg Pennyslvania where our son is attending his freshman year at Gettysburg College, and we stopped in Staunton Virginia at a Cracker Barrel where we had pre-arranged to meet with Dot and Smitty for lunch. What’s really interesting to me is that the entire time I communicated with Dot during my most difficult times she lived in Sisters Oregon, and only just recently Smitty (Harold) retired and they moved to Virginia just in time for Doug and I to stop and visit with them on 27 October 2005. I was finally able to give this wonderful woman a great big hug, something she’d been giving me all those months with her words of encouragement and support, including lots of her medical knowledge having worked at MD Anderson Hospital years ago with many patients being treated for bladder cancer. I’ve written a great deal today, and for now I will stop and rest my fingers and my eyes. I appreciate hearing from others who have similar experiences, even those whose experience isn’t so similar. Sometimes it’s the way a person writes or something they might say that makes communicating with them something I need or want to do. Any of you who wish to may contact me through my email shown here at this site, and hopefully I won’t take so long with my next update. God Bless. Lou

Lou Graham Author