Mets Day 109 - new hope for continence

Today I had my Foley catheter removed, which always is a welcome thing.  Before it was removed, Hazel, the GW nurse who specializes in pelvic floor issues, filled my neobladder with about 320 ml of saline.  She then removed the catheter, and asked me to void the saline into a beaker and assess how difficult it was to drain the neobladder.  It was almost like the pre-neobladder days:  a single powerful stream for the first 80%, then another push to get the next 15%, and one more for the last 5%.  It was very unlike the voiding I've been experiencing since my surgical catheters were removed, where I had to strain to get out a few cc's, then regroup and try again.  Hazel said that increasing the size of the opening in the bottom of the neobladder from the size of a pinhole to about the size of a pencil would do that. 

To make sure this wasn't a one-shot (ahem) deal, she had me go out and get lunch with instructions to drink lots of Diet Coke, or, in other words, have a normal lunch.  I enjoyed a seafood salad at District Commons, and made sure the waiter kept bringing me new glasses of soda.  I returned and once again filled Hazel's beaker with a strong, steady flow.  I thought that I might have got my man card back a few weeks ago, but this was much more powerful experience.  It's a nice thing to go with the flow. 

Hazel said that I should notice an immediate improvement in nighttime continence.  She said that my pelvic floor muscles seemed to be strong (as shown by my daytime continence), and she did not think that I did not need to do kegels or other pelvic floor muscles at this time.  The key to nighttime continence, she said, was to make sure the bladder was fully emptied before going to bed.  Before, when the exit from my neobladder was the size of a pinhole, I was unable to empty the bladder, no matter how hard I strained.  Now, I should have a good urine flow.  In addition, she said that I should avoid sodas or other drinks with bladder irritants in them after 6 pm or so, and not drink anything a couple of hours before bed.  Even though my neobladder had a demonstrated capacity to hold more than a liter of fluid, she said that I should try to drain it every couple of hours during the day, so that it had no more than 400 ml at any time.  She warned that, if I continued to overfill the neobladder, eventually it would stretch out and lose its ability to compress, so I would be unable to fully drain it. 

These events have tremendously boosted my hope that I can start getting a good night's sleep -- something I have not had for three months.  In turn, I can look forward to my mind being more clear, and able to focus on work.  I went into the office after my appointment, and everyone was glad to hear that I might soon be able to return.  I have a major case that is set for trial in October, and would like to be able to resume working on it.  I still don't know what I want to do in the long term, but the hope that the three months of fog might be lifting is very exciting to me.  I'm going to give it a week or so to see how things are going, and assuming all goes well, I think that I'll try easing back into work. 

Mets Day 108 - Apostolic well-wishes

Today I received some words of comfort from Elder Neil Anderson, who is a senior LDS church leader with the title of apostle.  Elder Anderson came to our congregation's regular meeting and spoke -- a relatively uncommon event for an apostle.  During the next hour of our church meeting, I led the discussion in the adult Gospel Doctrine class, drawing upon some of the teachings of Elder Anderson.  Someone mentioned my condition to Elder Anderson, and he came into my class, apologized for interrupting, then proceeded to offer me some words of comfort, concluding with his expression that he felt that I would be blessed by the Lord. 

I was surprised and unprepared for Elder Anderson's personal visit, and appreciate that he took the time to seek me out.  Having reached a point where the doctors admit that they do not know how to heal me, my journey with cancer now has me walking in a field of faith.  The love and support of family, friends, and fellow persons of faith make a very real difference in my life.  A brief word of support, or a note that someone has been thinking about me, or has been praying to the Lord on my behalf, is touching.  I am so grateful for those well-wishes. 

Some people have told me, or have told others who have in turn told me, that they do not know what to say to me, or are afraid that they might say the wrong thing, so they say nothing.  Do not be silent to your friends or loved ones who you know are facing hard times.  A few words of support, or a hug, or a note or email, or similar expression, can make a huge difference.  There's no need to ask how I'm doing -- if you are reading this blog, you'll know -- so instead, just show that you care, just as Elder Anderson did. 

After all I and the doctors can do, all I am left with is family, friends, and faith.  Faith is a moving power, and the collective hope for healing helps to sustain me.  I believe that it is important to speak up, to show that you care, to reach out and show that neither you nor your loved on is alone.  That single comment or well-wishing can make all the difference to one in need.    

Mets Day 106 - urethra scarring

Today I had an appointment with Hazel, a urology nurse at GW who specializes in pelvic floor issues.  After we reviewed my pee log and discussed in some detail my recent problems with being able to void and increasing nighttime incontinence, she suspected that this was not an issue of a weak pelvic floor.  After giving her a urine sample and trying to empty my neobladder, I assured her there was still a good deal of urine that was not coming out.  She decided to catheterize me and find out how much was left.  Oh, joy:  I'm not a fan of catheterization.  She was unable to get the first one into the neobladder, despite several gentle but still painful jabs.  She found a smaller catheter, but after still more jabs, she was unable to get that one into the neobladder either.  After checking with Dr. Fraizer, she did an ultrasound, so I hobbled from one room into the ultrasound room.  The ultrasound confirmed that my neobladder had lots of urine, and also appeared to show two different reservoirs.  Hazel told me that she suspected that I had a stricture -- a compression in my neobladder -- either because it was twisted, or from scarring due to the surgery. 

Dr. Fraizer and his chief resident then did a cytoscopy.  They snaked the scope through my urethra, and the camera showed that the top of the urethra where it joined the neobladder had scar tissue around it so that the opening was less than one millimeter wide -- about the thickness, he said of the wire of a paper clip.  He had the image on a large monitor and was showing me the images and explaining it all to me.  Dr. Fraizer said that explained why I was only able to urinate in short bursts - the compression of the neobladder would only push a little bit of urine through that small opening, then I'd have to squeeze again. 

Dr. Fraizer then snaked a very thin guide wire through the cystoscope and into my neobladder -- the guide wire barely fit through the opening.  He withdrew the cystoscope, leaving only the guide wire, then explained he was going to "punch a hole" through the scar tissue by pushing a series of catheters through it, each one larger in size.  Question:  How many catheterizations can Ken have in 30 minutes?  Answer:  8!  The first one was the most painful:  the doctor had to literally push through the scar tissue, scraping some off, as the catheter tip passed from my urethra into the neobladder.  After a couple of punches, Dr. Fraizer noticed my discomfort, and pushed some lidocaine into where they were doing their scraping.  Note to doctors and nurses:  As a general matter, application of pain-killer should precede infliction the pain. 

The fun ended with another cystoscopy, and this time Dr. Fraizer was get it into the neobladder and look around.  Everything looked fine, he said:  no twisting or other scarring or other issues.  The two different reservoirs as shown on the ultrasound was due to a particular viewing angle of the ultrasound, showing the upper and lower portion of the neobladder.  He withdrew the cytoscope and inserted a Foley catheter so the top of the urethra could heal.  I will go back on Monday to have it removed and see if I can now pee better.  Dr. Fraizer said that we could flush the catheter and neobladder daily to ensure it did not get blocked by mucus.  Just like the old days -- only two months ago!

Here I thought I was just going to have a nurse talk to me about kegels, and instead I'm there for nearly three hours to have my penis roto-rooted.  Dr. Fraizer said that, in many cases, this single clearing of the scar tissue is enough, and no further intervention is needed.  But I should be mindful of changes in how my body voids urine, and if I start spurting again, it could be a sign that the scar tissue is re-forming.  Maybe it could be cleared again, or I may have to do daily self-catheterizations to keep it open.  Doesn't that sound fun? 

Mets Day 104 - clinical trial control group

Charlotte from Fox Chase just called to say that I had been randomly placed into the control group for the Dendreon trial.  That means that Dendreon will pay for my CT and MUGA scans every 2-3 months for life (or as long as I chose to participate), but that I won't be getting the experimental treatment.  Oh well.  I hadn't been expecting too much from the trial in any event, since most clinical trials involving metastatic bladder cancer fail to live up to expectations.  Jennifer's reaction was sharper than mine, but there's not a lot we can do about it. 

I'm keeping another pee log in advance of my visit to the pelvic floor specialist at GW on Friday.  Yesterday I managed to put out 1,350 ml of urine in one sitting (after drinking 64 oz. of Diet Coke), so I know that my neobladder has a lot of capacity.  The key is training my body to hold it at night.  I'm still getting up 3-4 times each night, and leaking in between.  Last night's sleep was particularly unsatisfying, and I expect I'll have that groggy feeling all day.  Bleah.  

Mets day 99 - PSA issues

Yesterday Charlotte from Fox Chase called me to say that my PSA test score was slightly over the acceptable threshold for the clinical trial.  Dendreon's guidelines say that a PSA score should be no greater than 1.1; my score was 1.11.  Really?  That one tenth of one percent matters that much?

I was surprised I had any PSA score, since I don't have a prostate.  When my prostate was removed on May 2, I was found to have prostate cancer, but my Gleason scores were pretty low, and there was no pathalogical evidence that it has spread outside of the prostate.  By the way, a new JAMA study (abstract here; NY Times article here) concludes that early surgical intervention for low-grade prostate cancer has no beneficial effect over watchful waiting.  Given that such surgery usually creates long-term issues with incontinence and impotence, my advise to men with low-grade prostate cancer is DON'T HAVE THE SURGERY.  Just watch and wait.  Most men have prostate cancer when they die, but low grade prostate cancer is rarely fatal.  The side effects of the surgery are not worth it, and it won't prolong your life.  This is unless you like wearing a diaper each night, not getting a good night's sleep, and being impotent. If that's your thing, then go ahead, have the surgery.

I didn't have much of a choice, since my bladder cancer was highly aggressive, I had failed chemotherapy, and the CT scan showed that it had metastasized into my lymph nodes.  I had to have the surgery.  But if I had just the low-level of prostate cancer that I did, and not bladder cancer, I would not have had the surgery.  It saddens me that as many as 90% of men with prostate cancer have lower level prostate cancer, and don't need the surgery, because it won't prolong their life according to the JAMA study, and the side effects suck. 

Anyway, all patients being accepted into the Dendreon trial have has their prostate removed along with their bladder, so I have a hard time understanding why they care about the PSA level.  Maybe they don't want patients with any residual prostate cancer floating around.  But a 1.11 instead of a 1.1 seems to be a maddeningly minor distinction.

The Fox Chase solution was to have me re-tested for my PSA level.  So I went into a Labcorp facility to have another blood draw.  Charlotte called this morning to ensure I had it taken care of, and will call Labcorp to get the results.  Apparently they really want me to participate.  Earlie this week, Charlotte emailed me to say that Dendreon had agreed to cover all of my travel expenses associated with the trial.  Maybe I'll start staying at the Four Seasons or Ritz and ordering room service . . . .

Update:  Charlotte just emailed to say that the second PSA test was fine, and now the ball is in Dendreon's court to tell me into which arm I'll be randomized.  I should know sometime next week.  

Mets Day 95 - nightime incontenence frustrations

Today Jennifer and I met with Dr. Fraizer, who was happy to see that the scans were all clear.  For now, the cancer concerns are on the back burner.  He warned that I continue to be at high risk for recurrence, but until the scans show something, there is no use in worrying about it. 

Most of the appointment was spend discussing my ongoing problems with nighttime incontinence.  I noted how, last night, I had gone to the bathroom at 1:5, 3:30, 5:30, and 7:30 am, and my Depends was still soaking.  That has been a typical nightly experience for the past month.  Either I am not completely emptying my neobladder (despite sitting on the toilet for 10+ minutes each time and peeing in starts and stops), or my kidneys are in hyperdrive at night.  Ether way, when I sleep, my pelvic floor muscles relax such that I leak urine. I've tried not drinking anything past 8 pm, and trying extra hard to make sure my neobladder is empty before going to bed, but it seems to make little difference. 

Dr. Fraizer said that nighttime incontinence is the most common complaint regarding neobladders.  I know from the literature that between 25-40% of neobladder patients have this complaint.  I didn't fully appreciate prior to surgery what a dramatic conseqience nighttime incontinence could have on my quality of life.  To all bladder cancer patients considering a neobladder, think long and hard about what I'm going through, and decide if the benefits of not having an external bag or the need to self-catheterize is worth the trade-off.  I had let the decision of whether to have a neobladder or an ileal conduit to the surgeon, depending on how extensive the cancer seemed.  I had told him that, if he would tell that the cancer had metastasized, then I'd prefer an IC instead of having to train a neobladder.  He thought I was ok.  Oh well.  It is what it is. 

Dr. Fraizer said that the line of attack to deal with the nighttime incontinence should be as follows, in order:  (1) work with GW's pelvic floor nurse, who specializes in helping strengthen the pelvic floor in both men and women; (2) if that does not work after several months, consider a type of procedure, like a pelvic sling for men, that can help me be continent; (3) if that does not work, consider other more radical options, such as artificial sphincters.  I intend to follow up with step 1 immediately -- I has not at all satisfied with the results from the physical therapist that I saw in June, and hope that GW's therapist will be able to bring around better results. 

I've been hopeful that the problem with nighttime incontinence would dissipate with time.  The best I felt was in the first couple of weeks in June, when I could sleep without a diaper (although I was still getting up every couple of hours).  Dr. Fraizer said that the regression that I was experiencing was common, and warned that I would continue to experience ups and downs for the next several months. 


So it looks like I'll be continuing with Depends for a while.  I've tried external catheters, but putting that thing on and taking it off is a pain.  It's basically a thick condom with adhesive, which connects to a catheter line and drain bag.  Having that tube snaking around my legs while I sleep is worse than the diaper. 

Jennifer compares my mental state during the day to having a new baby, but without any of the joy.  Others have observed that it's like being a little drunk all the time, with little confidence in the accuracy of my judgments.  I have found it hard to read, and harder to retain, anything that requires concentrated focus, such as legal briefs.  It's deeply frustrating to me to have this ongoing state of impairment.  I have continued to put my return to work on hold, since I have little ability to predict how I will be doing each day. At some point, I'm going to have to decide what I'm going to do in the longer term, but right now I'm continuing to defer that decision pending attempts at resolution.  I know that I'll have to make that decision at some point -- as my mom used to say when encouraging me to make a decision (and using a particularly prescient metaphor):  pee or get off the pot. 

Mets Day 91 - Fox Chase; CT scan results

Jennifer and I spent the day at Fox Chase Cancer Center in Philadelphia.  I received a MUGA (Multi Gated Acquisition) cardiac scan (since there is a remote risk that the experimental drug could affect the heart, the sponsors want a baseline), as well as a CT scan of the chest, abdomen, and pelvis.  The scans were read immediately, and by the time we met with Dr. Betsy Plimack, she was able to tell us that the MUGA scan was normal, and the CT scan detected no metastatic activity.  Great news!  Of course, this does not mean that I am cured of cancer; it only means that the scans are unable to detect any solid tumors or enlarged lymph nodes. I will have these scans repeated every three months or so; only after 5 years of negative scans will doctors say that there is a very low likelihood of recurrence.  And as we know, the odds are very high that there will be a recurrence at some point.  But not today, Zurg!  (Name it:  who said it, in what movie?)

We also discussed with Dr. Plimack the clinical trial objectives.  She explained that the sponsor, Dendreon, has adapted its prostate cancer drug, Provenge, in hopes of targeting bladder cancer that has the HER-2 marker.  While this is a first-in-human trial for bladder cancer, the efficacy of the process has apparently be shown in other tests.  Whether it is effective is unknown; bladder cancer is different than most prostate cancers in that bladder cancer typically has many more genetic variations and is much harder to target.  The intent is to target the cancer when it at the microscopic level, hoping that the cancer associated with the HER-2 marker will be neutralized. 

Procedurally, the clinical trial will work as follows:  In about a week, the trial sponsor will randomly place me into either the control group or the experimental group.  If I am placed into the experimental group, then I will have three events of blood draws and infusions -- a draw on Monday or Tuesday, and an infusion on Thursday or Friday of the same week.  Then I'll wait for two weeks, then do it again, for a total of three rounds of treatments.  Then I'm done with the therapeutic part; the rest is just scans.  If I'm in the control group, then I don't have any draws or infusions (contrary to what I had earlier understood), but will just have regular CT scans, which is the current standard of care.  Either way, the sponsor will pay for me to be followed for life with CT scans, whether or not insurance will cover it. 

All of the draws, infusions, and scans must be done at Fox Chase, unless a closer location is opened for this trial, and I can get permission from the sponsor to change locations.  Aside from the drive, Fox Chase is an impressive facility and impressive people.  Maybe I've put a halo around Fox Chase due to the good news of the clear scans, but I'll take good news like this any way I can get it. 

Mets Day 90 - got my man card back

For the past 3 weeks or so, I have been unable to pee standing up.  Apparently the bacteria infection in my neobladder kept it from contracting enough to squeeze out much urine.  The best I could do was to sit on the toilet for a while and hoped something would dribble out.  I have documented that it is possible to read the entire Washington Post in one sitting.  Nighttime was the most common time for my urine to greet the outside world, usually soaking through whatever getup I was wearing. 

After 10 days on Cipro, this morning I was able to pee standing up.  Weeee!  I felt the testosterone surging through my body.  I wanted to go out and kill something and eat it, or spit off a tall building, or get lost and not ask for directions.  I am a manly man!

This afternoon or evening Jennifer and I will drive up to Philadelphia.  We'll spend most of the day at Fox Chase.  We'll sign all the clinical trial forms, then I'll have a MUGA scan to make sure my heart is still working.  I'll be given a tasty barium drink, wait a while, then have the CT scan on my chest, abdomen and pelvis.  We'll probably be at Fox Chase for most of the day. 

I looked into seeing if we could go visit the Barnes Museum while we were in town, but all the tickets for today and tomorrow were gone.  Maybe next time. I've heard it's an interesting place, although maybe not for a manly man. 

Mets Day 89 - bone scan results

I had a bone scan on Monday, July 9.  Went in at 9 am for the injection, then had to wait for 3 hours while the radioactive stuff seeped into my marrow.  I was afraid they were going to stick a foot long needle into my spine, but it was just a simple shot.  The scan was easier than a CT or MRI - just lay in the table and a 2x2' box slowly moves over you.  I almost fell asleep.

The results were just faxed to me:  "Normal whole body bone scan without evidence for metastatic disease."  Yay!  No cancer in my bones (for now).  Note that this does not scan lymph nodes or other soft tissue - that's what Thursday's CT scan is for. 

Mets Day 85 - clinical trial update

This afternoon I heard from Fox Chase, who told me that I had been tentatively accepted into the Dendreon clinical trial.  It's a double-blind Stage 2 first-in-human test of an immunotherapy drug named DN24-02 as an adjuvant therapy in patients with high risk HER2+ urothelial carcinoma (e.g., me).  For those of you who are wondering, DN24-02 is an autologous cellular immunotherapy product designed to stimulate an immune response against HER2/neu. It consists of autologous peripheral blood mononuclear cells (PBMCs), including antigen presenting cells (APCs), which are activated ex vivo with a recombinant fusion protein.  Got that?   Half the patients will get the drug, and the other half will just be followed with a series of scans.  According to Dendreon, the purpose of this study is to compare the length of survival between these 2 groups of subjects. Other purposes of the study are to learn about the safety of DN24-02, to learn if it delays the time until urothelial cancer recurs, and to learn if the immune system responds to treatment with DN24-02. All subjects will be followed for this study for the remainder of their lives.  More info about the study is available here.

Dendreon has developed and sells a prostate cancer drug named Provenge.  It's not releasing a lot of information about this new drug, however.  The treatment portion of the clinical trial will consist of my having blood taken, sent to Seattle for infusing with the DN24-02, then sent back to be infused back into me three days later.  This will happen three times, with two weeks between each infusion.  Then Dendreon follow me with a series of scans until I die.  After I complete this trial, I am free to do other trials, or seek other treatment.This is about the only clinical trial for someone in a position as me - no distant solid tumors yet, but at high risk for developing them.   

I'm tentatively scheduled to have a series of scans at Fox Chase on Thursday, July 12 -- a CT scan with contrast of the chest, abdomen and pelvis, plus a MUGA scan to check cardiac function.  I was going to have the same CT scans on July 9, but I've cancelled those.  I will proceed with the bone scan on July 9, however. 

I realize this clinical trial is merely an experiment, and I'm a lab rat.  I have little expectation that this clinical trial will do any good.  Even if it does, I probably will never know, since it's a five year study, and the object of the clinical trial is to see who lives longer -- those who got the drug, or those who didn't.  But it's the only option right now, and the doctors at Chicago, Hopkins, GW and NIH all thought it was the best choice for me. 

Meanwhile, I am still having trouble peeing.  When I try to go, little comes out.  When I am not trying to go, sometimes I involuntarily start to pee.  I run to the bathroom, and . . . nothing.  Maybe, just maybe, the Cipro is starting to make a difference:  last night, before I went to went to bed, I sat on the toilet for about 15 minutes and worked really hard to drain my neobladder (squirt . . . wait 15 second or so . . .  squirt . .  wait 20 seconds or so . . . you get the idea).  For the prior week or 10 days, I have not even been able to have those series of squirts.  Getting up in the middle of the night to try to pee some more did not accomplish much, however.  But perhaps as a result of my trying extra hard to drain my bladder before bedtime, my Depends was somewhat less sodden in the morning.  I'll take those little victories whenever I can get them.

[edited July 12 to correct information about the clinical trial]

Mets Day 84 - home again

Our power at home was restored at 11:15 pm last night -- just over 5 days after the derecho (I didn't know what it was either) knocked it out.  Just in time for my folks to get back home and pack up and get ready to fly back home to Florida tomorrow morning.  We enjoyed our time at the lake, but it was nice to get back home this afternoon.  Now I can pee in my own bed. 

The nighttime incontinence is not getting better.  I don't know if it is the infection in my neobladder, or what, but I am unable to drain it like I used to do in early to mid June.  I have very little ability to generate a consistent flow - just a slow series of weak squirts - making it very difficult to empty the neobladder.  I no longer think it is a mucus blockage, but an inability to contract the neobladder.  I'm hoping that as the Cipro knocks down the infection, I'll be better able to void. 

Until we get this figured out, each night my neobladder slowly drains when I fall asleep and the sphincter (such as it is) relaxes.  When I get up at night to try to drain it, I am unable to do so.  It's very frustrating.  Wearing a Depends works only for a couple of hours, then it soaks through.  I'm experimenting with doubling up, or otherwise trying to contain the urine.  I have a waterproof pad on the mattress, and use "chucks" (disposable waterproof pads) to add further protection, assuming I stay on it during the night.  We usually end up having to wash the sheets daily.  While Robert Duvall might have loved the smell of napalm in the morning, I hate the smell of urine in the morning. 

Mets Day 81 - a failure to communicate

About two weeks ago I had visit with Dr. Fraizer.  He ordered a full CT scan and a bone scan.  It was scheduled for today.  The insurance company refused to approve it without seeing Dr. Fraizer's notes or justification.  But Dr. Fraizer went on vacation last week, and his nurse ignored all attempts by the insurance company, Dr. Fraizer's administrative aide, or me, to contact the insurance company.   Last Friday, the company that was to do the scans postponed it by a week, to July 9. 

Today, Dr. Fraizer's office called to tell me that the scans had been approved.  Apparently, Dr. Fraizer had dictated his notes of my visit, but had not reviewed or electronically signed until today.  Once those notes were forwarded to the insurance company, it immediately approved the scans.  While I wish the insurance company didn't require those pre-approvals, I put the blame on Dr. Fraizer's office for doing nothing while he was gone.  

Dr. Fraizer called me later in the day to tell me that the result of my urine screen showed a lot of bacteria, which he said probably explained why I had trouble voiding, and also might explain my lower back pain.  He called in a prescription for that.  It would be nice if someone in his office had read the results of the tests and called me earlier.  I've been dealing with not being able to consistently pee for quite a while, and it has felt like I've been regressing on my recovery.  Like Cool Hand Luke, I'm not feeling particularly patient or charitable right now. 

Mets Day 80 - 2 month post-surgery report

Sixty days after my surgery, here’s how things stand:

1.  The primary incision has completely healed.  There is no pain associated with it.  It is still hard to the touch, but it can be moved when touched, indicating that it is not deeply connected, which is good.

2.  The SP tube scar has completely healed.  For much of the past month, I had a considerable amount of pain associated with both that incision, and the muscles below the SPT scar.  About 10 days ago, I had a massage by Mike Taylor, who specializes in rehabilitative massage therapy – he works with a number of professional athletes – and he worked on the area below the SPT site for 15-20 minutes.  It was somewhat painful, but he loosened up the muscles below the SPT scar, and in particular broke up a tight cord that coincided with the most amount of pain.  Since then, I have felt almost no pain in that area.  It’s wonderful to not have constant pain there.

3.  My abdominal strength is much improved, especially post-massage.  I can get up normally from chairs, roll over in bed without pain, go up and down stairs normally, and otherwise generally move normally.  I still try to avoid lifting very heavy things (over 50 pounds) or quickly twisting my torso, but each day is a slow improvement. 

4.  Voiding the neobladder was getting easier, but about recently it has became much more difficult.  I used to be able to use my abdominal and pelvic muscles to get a relatively steady flow of urine, but now it is much weaker and sporadic.  I am wondering if perhaps I have some mucus that is blocking most of my urethra and impeding the flow. No matter what I do - stand, sit, squat, lift one leg, push on my neobladder, etc., I am unable to do more than a short squirt.  This makes emptying the neobladder a time-consuming process, and virtually impossible to do completely. 

5.  I likewise have noticed a reversal regarding continence.  I was consistently continent during the days, and slowly extending the amount of time between voiding during the night.  In the past week or so, however, I have found it to be much more difficult to maintain daytime continence – frequent leaks are common, even without sudden movements or sneezing.  And nighttime continence is nonexistent.  With no ability to completely drain my bladder like I used to, I will wake up with frequency to a sodden Depends diaper.  At my next appointment with the urologist (July 16), we’ll be exploring this issue in some detail.  Until then, I’ll be reliant on pads and diapers.

6.  The overall level of pain has been declining, although I take the prescription-level Naproxin when I find I have the lower back pain, which comes and goes. My stamina is slowly growing, but I still feel weak.  On occasion, I've gone into work for a couple of hours, and am exhausted when I come home.  Last Sunday, I taught the adults in Sunday School -- the first time I've done that since my surgery - and while that was an invigorating and pleasant experience, I was tired when I sat down. 

7.  My voice is slowly recovering from the scarring caused by the surgery.  It does not break like it did for the first month or so, although I cannot project as much as I used to. 

8.  My hair is slowing growing, but is much thinner.  Jennifer tells me I have a bald spot on my crown – something unimaginable before chemotherapy. 

9.  My appetite is slowly recovering.  I find myself still eating less than before, but my weight has stabilized.  After weeks of hard work, I am approaching my pre-surgery level of Diet Coke consumption. 

10.  No change on the impotence front.  My urologist gave me a script for Cialis, but I have not filled it yet.