Mets day 140 - that bites

Jennifer, Garrett and I drove down to Lake Anna this afternoon.  Kirsten and her boyfriend will come down tomorrow, as will Chelsea and Josh.  Spencer may or may not come down.  He's been burning the candle at both ends lately, getting up at 5 am for a 6 am power workout, starting school, working, attending his AA meetings, and staying up late watching every preseason NFL game possible, so he said he might just sleep all weekend.

Anyway, Jennifer, Garrett and I went out on the boat, joined by our standard poodle, Nephi.  After a long cruise, we stopped to swim.  As I dove in, Nephi lunged for my leg -- its a game he plays, either on the boat or at the pool -- only this time he got me, sinking one of his teeth into the heel of my foot and ripping open a decent chunk of skin.  We patched it up with gauze from our first aid kit and made our way back to the house.  Since the local clinics were all closed for the holiday, we had to choose between self-medicating or driving for an hour and sitting in an ER for hours more.  Knowing that Chelsea was coming down tomorrow,  we chose the former.  I texted Chelsea to bring her doctor's kit.  I told her that I didn't think it needed stitches, but she should bring something to stop my mouth from foaming.  Maybe cancer won't kill me after all. 

Postscript:  On Saturday I went to an urgent care clinic where the doctor cleaned my wound, gave me a tetanus shot, and a antibiotic prescription.  Everything looks fine. 

Mets Day 139 - slow flow, no go

On Monday I had another appointment and saw Hazel, Dr. Frazier's nurse, to further diagnose and work on the stricture.  I was having increasing difficulties in emptying my neobladder for the past couple of weeks, and could sense that the stricture -- the scar tissue at the base of the neobladder, which lets the urine flow through the urethra -- was re-forming.  I had self-catherterized a couple of times to try to keep the stricture from getting too small.  Pushing the catheter through the stricture usually requires a bit or force, then "pop" as it squeezes through the compression.  Shoving the catheter up the urethra is unpleasant, even with lots of jelly, and pushing it through the stricture involves some deep breathing . . . 1, 2, 3, shove, ugh!  Plus, you need to remember to put the end of the catheter into the toilet bowl or a container, or else urine starts flowing out all over the floor.  Each time I've self-catheterized, I've been so intent on getting it bast the stricture that I forget that there is no valve on the end of the catheter, and draining is instantaneous. 

So Hazel had me do the voiding trial -- essentially peeing into a container, seeing how much I can get out, then seeing how much is left after catheterizing.  I had prepared by drinking large quantities of Diet Coke for lunch, and managed to get about 350cc into the beaker.  I had to strain to get that out instead of having a continual flow.  Straining indicates something in not right -- in my case, it's likely the stricture.

Hazel then had me catherterize myself, only this time she used a more flexible red catheter.  I found that it was less painful than the clear catheter with the blue stripe that I had been given by Hopkins.  I'm not saying that it's something I'd want to do several times a day, but the red catheter is a slight improvement.  Pushing it through the stricture also was not as much of an adventure -- it slid through with less resistance than the other catheter -- and Hazel was there to direct the flow into the container.  I had another 50 cc or so leftover.

Hazel concluded that I had a moderate stricture, but that catheterizing it helped it re-open.  She advised catheterizing each night.  We talked about whether that was a lifetime duty, or whether I could avoid that.  She didn't know.  I told her about my conversation with Dr. Large from the University of Chicago, and that they said that several cystoscopies might be needed to persuade the scar tissue not to re-grow.  She said that the problem with that was that taking out too much tissue around the stricture could mean that I lose all continence, day and night.  I asked how much of a risk that was, and she said that it was a high risk.

This weekend I'm going to do some research into this.  I'm also going to schedule a consult with Dr. Frazier.  I will contact Dr. Schoenberg at Hopkins about this too, and also will email Dr. Steinberg in Chicago.  I don't want to spend the rest of my life catheterizing if I can avoid it, but I also don't want to make the problem worse by having too much tissue removed and having no urinary control.

Meanwhile, I'm still getting lousy sleep each night.  I still wear the Depends each night, and even if my neobladder is totally empty when I go to bed, I still leak at night.  When I leak, I wake up, and I have trouble going back to sleep.  Each morning I get up tired.  This is getting old.  I think I'm also going to ask about a sleeping pill that will knock me out and let me get a decent night's sleep.  To sleep: perchance to dream.  Ay, there's the rub. 

Mets day 136 - let's do this every year

Yesterday concluded my three-day 50th birthday celebration.  It was a different experience for me -- in the past, I have met my birthdays with indifference, and my family has played along, sometimes going by without saying or doing anything.  And I was ok with that.  But this year Jennifer and the kids decided to do something different.  I wonder why.  In any event, it was nice to spend time with friends and family. 

Last night we got together with our good friends that I met on the first day of law school, exactly 27 years ago.  We were some of the few law students in relationships, and coalesced into a deep friendship.  Our study group became the set-up for a joke:  A hippie, a show girl, and a Mormon walked up the the bar . . . . 

The evening was capped by two wonderful gifts:  Bill gave me his 50 year old play-doh container, filled with 50 marbles, which he said he had carefully collected after I lost them, one by one.  At the bottom was a nut from his erector set, which he swore was to symbolize that I had a screw loose, and nothing to do with my broken erector set.  

Cynthia then read her list of "50 things we love about Ken".  We were all in tears by the end.  Here is page 1: 

and here is page 2:

Friends are the tonic of life.  Thank you. 

Mets Day 134 - More surprises

Thursday night was rough -- I slept for about 2 hours.  I'm pretty sure my stricture is re-forming, since it is more and more difficult to void my neobladder, keeping me awake at night.  Friday morning I got up early, sat in the hot tub, read the paper, and visited with my Mom.  Kirsten came downstairs with a bemused smile on her face, like she knew something I didn't (which usually is the case).  Immediately thereafter, my brother, who lives in Park City Utah, called to wish me happy birthday.  He asked what I was doing, and as I walked around the corner from the kitchen, there he was.  Surprise!  Everyone but me was in on it.  We got a good laugh about it.  He had arrived at about 1 am that morning, and Jennifer made the midnight run to pick him up. 

We spent the day catching up and getting ready for last night's open house and pool party.  More than 100 people showed up, and  Josh and Spencer manned the grills.  I enjoyed visiting with everyone, and we had an enjoyable time.  I slept better last night -- about 4.5 hours -- then this morning all 9 of us gathered at the Original Pancake House for a late breakfast. 

This evening we'll have a combined birthday celebration for me and Chelsea, whose birthday is just a few days after mine.  She's doing her surgery rotations, and will have a 30-hour shift on her actual birthday, so we'll celebrate when we can.  It's nice to have so much of the family together.  My mom and brother both will return home on Tuesday, so we'll have a couple of more days to visit. 

Mets Day 132 - Surprise!

Tomorrow we're having an open house for my 50th birthday.  (If you didn't get an invitation and live in the DC area, sorry, you're invited!)  Earlier this week I talked to my Mom on the phone -- she lives in Florida -- and she said that she wished that she could be there for the party, but it was a long way to go, and she and my stepdad had just spend two weeks with us at the end of June. 

So yesterday evening I came home from spending about 6 hours at the office.  Jennifer was not home, but the rest of the kids were.  I went into the bathroom to rearrange my bowels and read the paper, and heard Jennifer come home.  When I came out, there was Jennifer sitting with my mom in the living room.  I glanced over, said hi, then did the classic double take -- I did not expect my Mom to be sitting there!  We all had a good laugh.  Everyone but me was in on it, and Jennifer said that she nearly let it slip a few times, but the stealth mission was successful. 

My Mom will be here through Monday, unless the hurricane brewing in the Caribbean causes US Air to cancel its flights -- then she may be here a bit longer.  We'll happily take every minute of family time we can get.   Last night we played a few family games with the whole family.  Today I stayed home and we visited.  We pulled weeds in the flowerbeds until we were dripping with sweat, then came in to cool off.  It's nice to be able to have a comfortable relationship with her. 

Mets Day 129 - letters from the dust

Yesterday I led the discussion during the adult Sunday School class.  The topic was based on three chapters from the Book of Mormon (Mormon 7, 8, and 9) that set forth the final thoughts of two ancient prophets, written with the knowledge of their imminent deaths.  I opened the discussion by asking who had prepared wills (about half the class), and who had written personal letters to be read after death (one person).  I asked why people had prepared wills and the letter, then asked for examples of writings by people facing death.  We referenced Sir Walter Scott's message to the public before his death in Antarctica, and I read Sullivan Ballou's beautiful letter to his wife written just a week prior to his death at the first Battle of Bull Run.  I asked whether letters written with a knowledge that the writer soon would die carried a greater weight, and if so, why.  One person referenced a recent obituary written by the deceased, recounting his life and regret at having smoked, which caused the lung cancer that killed him. 

During our discussion, I said that I had given some thought about writing letters to Jennifer and each of my children, to be written after I had died.  I noted that, statistically, 90% of people with metastatic bladder cancer die within 5 years, so that there was a good chance that I would not be alive for many joyful family events, such as graduations, weddings, births of children.  I also would miss sorrowful events that are harder to predict but just as certain.  I said that I had begun to mentally compose such letters, but had not yet started to write them.  My intent, I said, would that such letters would become reference points for my family.

With that thought, we explored the three chapters, focusing on the sharp warnings against pride (see Mormon 8:35-39), and instead being humble.  I said how writing this blog has helped me process my journey, and how I had made a deliberate decision to not sugar coat anything, but to tell it how it is.  Doing that, I said helped me stay humble, because I was not trying to be anything other than what I was.  Sometimes, the act of putting into words the emotions and experiences that I am going through is the best way for me accept them for what they are. 

I also referenced Mormon 9:14 ("And then cometh the judgment of the Holy One upon them; and then cometh the time that he that is filthy shall be filthy still; and he that is righteous shall be righteous still; he that is happy shall be happy still; and he that is unhappy shall be unhappy still."), and focused on the last phrases:  "he that is happy shall be happy still; and he that is unhappy shall be unhappy still."  How, I asked, can we be happy in the face of the challenges of this life?  Should I be happy having metastatic cancer? 

From 1981 to 1983, I served as a volunteer missionary in New York City, spending most of my time in the South Bronx.  My mission president would frequently tell us, "happiness is wanting what you've got."  I related this to the Sunday School class, and asked whether I should be happy that I've got metastatic cancer?  Safe to say that no one would choose such a thing.  But it's my reality, and owning it, I can say that I am a happy man.  I am grateful for each day, that my life has been prolonged, and that I can live with as much grace as I can gather and share. 

Perhaps this is one of my letters from the dust.  I intend to write others.  But as John Lennon wrote, life is what happens to you while you're busy making other plans. 

Mets Day 126 - that giant sucking sound

This afternoon I went to Dr. Fraizer's office to have him check on whether a stricture was reforming at the bottom of my neobladder.  It certainly feels like it, because it's becoming much more difficult to void.  Instead of the uninterrupted flow that I was getting a couple of weeks ago, I'm back to the slower, multiple attempts.  Last night, for example, I went to be with the feeling that I could not empty by neobladder.  I woke up several times to try to empty it after feeling some squirts into my Depends.  Unfortunately, Dr. Fraizer was in surgery, but his nurse advise me to try to self-catheterize before I go to bed.  I can hardly wait. 

Speaking of hardly waiting, while at Dr. Fraizer's office, I met with a representative of a company that sells penile vacuum devices.  (There's a job I bet he didn't foresee while in high school.)  I got quite the education about how those things work (thankfully, he did not give me a demonstration).  There's so many jokes and puns I could make, but I'll just play it straight for this blog and leave the yucks to the commentators. 

The rep explained that it's important to ensure that the blood vessels are fully engorged with blood, or else they and the surrounding tissue will atrophy.  The pump should be used for three weeks before attempting to resume sexual activity.  "Use" means using the vacuum to draw blood into the penis until erect, then releasing the vacuum, waiting a minute or so, and repeating two more times.   You do that three times in the morning and three times in the evening.  After three weeks, regular sexual activity can resume, aided by the pump as needed.  There also is an option to use penile rings around the base to prolong erections, but a ring should never be worn for more than 30 minutes.  The rep also explained that I should not solely rely on drugs such as Viagra or Cialis, because while they assist in engorging the member with blood, they do not help in reversing tissue atrophy.  

It was an interesting eduction.  I didn't get the device since it needs to be cleared by the insurance company and delivered through a pharmacy.  Sounds like the perfect 50th birthday gift.  Or not. 

Mets Day 124 - U. Chicago follow-up

This afternoon Dr. Steinberg's chief urology resident, Dr. Large (I may have the spelling wrong - it's pronounced LAR-shee) called me to see how I was doing.  I described the issues that I've been experiencing post-surgery, the diagnosis of the neobladder stricture, and how Dr. Frazier hammered through several catheters to open it back up.  Dr. Large was impressed that I was not under general anesthesia while they did that.  He said that strictures occurred in about 10% of neobladder patients.  He said that the stricture could re-form, and sometimes it took three or four procedures to persuade the scar tissue to not reform.  He said that, if it did re-form, the next step would be to cut open the structure using the cytoscope, or perhaps burn off the scar tissue, again using the cytoscope.  He said that I'd be under anesthesia for those procedures.  He also added that self-catheterization might be required, maybe not every day, but every second or third day, until the scar tissue learned to not reform and close the drain hole.

We discussed how these complications were adversely affecting my sleep.  He commiserated, and said that the sleep patterns should improve once the underlying problems were solved.  But he implied that it could take some time before that happened.  I recalled how I was informed that nighttime incontinence occurred in about 25% of neobladder patients, and strictures occurred in about 10%, but I did not appreciate how those complications would interrupt my sleep patterns as they have.  There was simply no mention of sleep deprivation in the side effects, yet for me it has been the thing that has most restricted my return to work or otherwise lead a semi-normal life.

Dr. Large was also happy to hear that my initial scan had been clear.  I noted how I was in the Dendreon control group, and was not otherwise receiving any therapy.  He said that did not surprise him, because there was no proven therapy to be given to someone in my position.  We just continue to wait and see whether the cancer comes back.  So it was nice that the University of Chicago followed up on me.  All in all, I think they did a good job. 

Yesterday I went into work for a few hours, and chatted with one of may partners.  He had read my Day 119 post about what to say to people who ask me how I'm doing.  He said I needed to work out some sort of semaphore system so people would know if I didn't want to talk about cancer that day.  I told him that, for now, my cancer was sort of like my tinnitus -- it was always there, a constant presence, but that if I chose to focus on it, I'd probably go crazy.  As I type this, my tinnitus is going strong in both ears, probably in the 60 decibel range, at about 9500 Hz in my left ear, and 11,000 Hz in my right ear.  I've lived with it since age 38 or so.  There is nothing I can do about it.  I have to simply ignore it, or else it will drown out everything else.  Psychologically, my cancer isn't much different.  The knowledge is constant.  There is nothing I can do about it.  As long as it's not causing my physical pain, then I prefer to not focus on it.  So when people ask how I'm doing, and I chose to engage them with a longer answer, I will still nonetheless probably not talk about the cancer, because there's not a whole lot to say. 

It's helpful to me if people tell me that they've been reading my blog, because that means that I don't need to update them on all of the big picture events.  Those people usually will not simply ask me how I'm doing, but instead will say something like, "I've been reading your blog.  Anything new?"  That lets me thank them and either give a short answer, or thank them, or engage them, depending on my mood. 

Mets Day 119 - how I'm doing

When people ask how I'm doing, I need to decide whether they really want to know, or just want a socially acceptable short answer.  How I respond not only depends on how well I know the person asking, but how I'm feeling, and whether I want to talk for a while.  Frequently, I'll just say "I'm taking it day by day," which is true, but not complete.  For someone who has metastatic cancer, there is no thing as an an honest, short answer to that question.

So how am I doing?  I take it day by day.  How I feel, and what I do each day, is largely driven by how well I slept the night before.  Since my ureter was reopened and the Foley catheter removed on July 30, my average amount of sleep each night has doubled from about 2 hours per night to 4 hours per night.  I still wear Depends to bed each night, and I still leak each night, but it's not nearly as bad as it was before.  A typical night is has me going to bed at about 11:30 pm, then getting up at 12:30 or 1 to again try to empty my neobladder.  If I can make it to 5 am without waking back up due to feeling a leakage, then it's a good night.  I will again empty my bladder, then will usually lay back down and try to doze some more, but I rarely will return to deep REM sleep.  Sometimes I will sit in the hot tub while he dawn slowly breaks, then will either lay down or sit in a recliner and try to doze. 

A bad night is when I keep leaking and can't get a lot of deep sleep.  Last night, for example, I was up at midnight, 1:15, 2:30, 4:30, 5:45, and 7, so I am not feeling well-rested today.  On days following a bad night, I feel wooly and lethargic.  That's generally how I've felt for the first three months following the surgery, so those days that I do get 4+ hours of consecutive sleep, I feel much more alert and attentive.  Everything is relative, of course -- even after good nights, I tire faster than normal.  Yesterday, for example, I came into the office at about 11 am, and by 4:30 pm I was pretty tuckered.  I usually would have gone home, but I had a dinner plans downtown at 6, so I laid down on the sofa in my office and napped for an hour.  I listen to my body, and do what I need to do. 

Meanwhile, the knowledge is never far from my mind that I've got microscopic urothelial cancer floating around my body, looking for a place to latch on and start killing me with secondary metastases.  I know the statistics which tell me that there is a 90% chance I'll be dead within five years, and there is nothing that doctors can do about it.  I have accepted these facts, but I have not resigned myself to certain death, because it is not certain, and because hope, like faith, is a powerful moving force. 

I also am greatly comforted by my religious beliefs, which teach that my soul, and everything that I am, continues on after my body fails.  From the eternal perspective, death is not that big of a deal.  It's harder on those that are left behind.  This suggests that my focus should be on spending time with family and helping them be prepared for my eventual crossing over, regardless of when it is, or how it happens. 

Mets Day 115 – drying up

I have been carefully monitoring my nighttime sleeping and leakage habits since the July 27 procedure to reopen my neobladder.  The first thing I’ve noticed is that I have gotten used to sleeping while wearing a Depends.  The two nights that I tried not wearing it, I tossed and turned, probably because I was worried about peeing on the mattress.  I hope to wean myself of the habit as soon as I am confident that I am fully continent during the night.  I'm far dryer than before, but not completely dry. 

I’ve noticed that what and when I drink fluids dramatically affects my nighttime urinary habits.  I guess it makes sense, but it didn’t used to be that way before surgery.  Oh well, that was then.  Now, I need to avoid Diet Coke after 6 pm or so, and any fluids after 8 pm or so, otherwise I am far more prone to leak at night. 

My regular urine flow seems to be fine, although sometimes I need to work to contract my neobladder more than other times.  I can’t say if the scar tissue is re-forming, but if it is, it will become progressively more difficult to empty my neobladder.  Time will tell. 

I have been sleeping longer each night since my neobladder was reopened – the longest so far is about 5.5 hours.  The difference between that and 2 hours at a time is huge.  I feel like I have more energy and am less lethargic.  Again, it makes sense, but until you’ve experienced three straight months of no more than two hours of sleep at a time, it’s hard to know what it feels like.  Mothers are quick to tell me that it’s like being a new mom, and I’m not going to argue.  All I know is that getting more sleep is a good thing.

For the past four days I’ve been in Asheville NC with Jennifer, Spencer and Garrett.  We saw that last desperate gasp of the guilded age known as Biltmore – we loved the grounds more than the castle – did a Segway tour (Garrett has a new item for his Christmas list), the boys went zip-lining, Jennifer and Spencer joined the weekly community drum circle, we went to lots of artist studios, at lots of good food, reconnected with friends, and had a good time.  It is a long drive from DC, however. 

Mets Day 111 - 3 month post-surgery report

Ninety days after my bladder, prostate, and 61 lymph nodes were removed, here's how things stand:

1.  The oncologists tell me that it is almost certain that I have microscopic urothelial cancer floating around in my body, most likely my lymphatic system, but the first post-surgery scans (bone scan and full-body CT scans) showed no evidence of metastatic activity.  Having failed GemCis chemotherapy, there is no proven second-line treatment for someone in my position.  The standard of care is watch at wait.  Statistically, there is a very high likelihood that the cancer will recur in a distant location -- most likely the liver, lungs, or bone -- but sometimes it doesn't.  And in the meantime, I go on with life, with a renewed appreciation of how precious each day is. 

2.  The primary incision is healed, and is becoming smoother to the touch.  No problems. The SPT scar is completely healed, and I have had very little pain associated with it in the past month.  Every now and then, I'll get a twinge of nerve pain across the right side of my pelvis, which I attribute to lingering scar tissue.  Maybe I should have another massage by Mike Taylor to break up the last of that scar tissue.

3.  I am slowly regaining abdominal strength, although I have assiduously avoided anything resembling an organized exercise program.  After the big windstorm, I started using my chain saw to cut up some of the fallen trees, although I eventually I got some sense and turned it over to my son and son-in-law. 

4.  As detailed in recently blog posts, voiding the neobladder for most of the past month has been very difficult.  Last Friday the urologist figured out that scar tissue had nearly completely closed off the exit point from the neobladder into the ureter.  That problem seemed to be the source of many of my urinary issues.  The doctor punched through the scar tissue using a series of catheters and succeeded in reopening the hole, at least for now.  There is a chance that it will begin to close again; I am to closely monitor my urine flow to see if it changes.  Two days ago the Foley catheter was removed, and since then I have been able to pee normally. 

5.  Nighttime continence remains a work in progress.  My leakage at night has dramatically decreased, although I am not ready to give up the Depends just yet. I am hopeful that enlarging the opening will enable me to completely empty my neobladder before going to bed.  Combined with modifying my diet to avoid drinking anything after dinner, perhaps I can stay dry at night.  I'm still trying to figure out what works best for me.

6.  My pain level has dropped through the month.  I find that I rarely need to take the prescription-strength Naproxin, or any other pain medications.  With the lack of sleep, my stamina has still been weak, but for the past couple of nights I've slept for four hours straight, and feel like a new man.  I know everything is relative, and hopefully as I get more sleep, my stamina and energy level will continue to increase.

7.  My vocal cords seem to have mostly recovered from the scarring during the intubation during surgery.

8.  My hair remains thinner and grows slower.  Last weekend I got my first hair cut since leaving the hospital.

9.  My appetite is near normal.  I made chocolate chip cookies last night and ate raw cookie dough while watching the Olympics, so life is good. 

10.  No change yet with regard to impotence, although the pelvic floor nurse at GW wants me to get a vacuum device that pulls blood into the penis.  She explained that, like any other muscle, the penis needs to be in an erect state several times a day or else it will atrophy.  (Sounds like a great pick-up line to me.)  She was trying to tell me that I should use this thing five times a day.  I think I'll bring Jennifer in to the next appointment and see if she's, er, up for it.