Mets Day 171 - the week of the weak

This past week has been another long one at work.  We’re just over two weeks away from picking a jury in the case that I have been working on since before my diagnosis.  I feel a substantial amount of responsibility to my co-workers and client to do what I can in helping to prepare the case, even though I have taken myself out of any speaking role at the trial.  

Consistent sleep still remains elusive, and I find that each day my state of mental alertness declines quickly, like running XP on a laptop with an old battery.  In the mornings, I have power, but boot up slowly, and it feels like takes forever to do something.  At some point, I lose power and my memory is zapped.  The trouble is, I don’t know when that moment will come each day.  I feel like I am no longer a reliable cog in my firm’s legal machine.  I don't like being the weakest link. 

Next Tuesday, I go up to Fox Chase for another round of scans.  I’ve tried to not think about it, but October 2 has been looming larger in the shadows of my mind.  It’s hard not to think what if, or have some trepidation.  One the one hand, I think that I mentally have accepted the chance that the scans could show the cancer has metastasized into a solid tumor somewhere in my body.  On the other hand, that news would remove the benefit of the doubt in which I currently live.  What is better: the bliss of ignorance, or the knowledge that science provides?  I have sought the latter, but at times wish that I could escape the consequences of that knowledge.  But closing my eyes and holding my breath won’t make my cancer go away. 

I’ve told a couple of my partners that, if the scans are positive, I won’t be going back to work at all.  I think I mean that, but I really don’t know.  I have not really dwelt on it. 

On my list of things to do is to fill out the applications for disability benefits from my insurance company. The test is whether I am capable of doing the same work that I was doing B.C.  My insurance agent, who has handled a number of such claims, is convinced that this is a pretty easy call in favor of my qualifying.  We'll see. 

Mets Day 165 - Did the surgery work?

I've been asked several times if the surgery to clear my stricture worked.  The short answer is it's too soon to tell.  I won't know for more than a month.  Keeping the Foley catheter in for a week ensured it would stay open.  Doing self-catheterizations twice a day for two weeks is intended to keep the urethra unblocked.  After that, I'll self-cath once a day for another couple of weeks, again to keep the urethra open.  Only after I stop daily self-cathing in a month or and see if if I am having increasing difficulty in urinating will I know whether the stricture is growing back.

Meanwhile, with the catheter out, I have a near-normal urine flow.  I am not yet confident enough in my nighttime continence abilities to avoid wearing Depends.  The Hopkins doctors told me that I should get up at least once during the night to empty my neobladder.   I've been doing that, but find that I occasionally still spurt or squirt urine at night, especially when rolling over.  Even with the Ambien, I still wake up when that happens.  As a result, I have not been getting consistent sleep this weekend.  I was intending to do a good deal of work this weekend, but got very little accomplished.

This reinforces my decision to apply for disability.  I feel like I am in no condition to deliver predictable, consistent and quality services to my clients.  The more I have thought about it, the more I am reconciled to the idea that, assuming I qualify for disability, I should put the full-time practice of law behind me, and focus on other things, like my family, friends, and faith. 

Mets Day 162 - How to remove a foley catheter by yourself

During the days that I have a Foley catheter in place, I wear a thigh drain bag.  It is held to my inner thigh by two velco straps, which inevitably loosen or slide down my leg.  That's why the StatLock is so important -- the end of the Foley is securely connected to the lock, so even if the thigh bag starts to slip down, the StatLock holds the Foley in place instead of lurching down my leg and suddenly pulling my neobladder and urethera south.  But walking with a catheter and a thigh bag is not that comfortable -- it tends to pit a bit of a hitch in my giddyup.

Anyway, I've been going to work each day.  This week has been very busy, as I'm helping get a case ready for trial, even thought I've ceded any stand-up role at trial to others on my team.  On Tuesday, I went to Norfolk for a hearing -- about a 4 hour drive each way.  I went with one of my partners, and we hired a car service, so we rode in the back of a cushy Lincoln Navigator.  Before I left, I flushed my catheter and neobladder with saline.  However, the Foley drain quickly blocked up with mucus.  During the entire drive down, or hearing, or lunch, very little urine was coming out to fill the drain bag.  I could tell my neobladder was getting fuller and fuller.  I tried to unblock it several times by repositioning the tube, sliding it up and down inside my neobladder.  I began to wonder if I might need to stop by a pharmacy for some saline and a 60 cc syringe and flush the thing out.  Finally, soon after we left on the drive back home, I felt the blockage dissipate.  The thigh drain bag rapidly filled.  For the rest of the ride home, it was like I had a hot can of soda strapped to my thigh.  It wasn't painful, just uncomfortable. 

Yesterday was an even longer work day.  I had a 90 minute presentation at one of our partner meetings, had several other meetings, and edited a number of briefs.  I felt like my brain was wading through wet concrete, especially as the day went on.  It took much longer than usual to formulate my thoughts and translate them to coherent sentences.  By the time I got home at 9 pm, I was beat.  I don't need to take Ambien, I thought.  I'll just crash.

Wrong.  There is something about having that four foot tube wrapped around your legs and hooked to the large capacity night bag attached to the bed frame that somehow keeps me from sleeping well.  Go figure.  I tossed and turned all night.  I considered taking the Ambien at 2 am, but was afraid it would grog me out until noon, and I knew I had a lot to do today.  At around 5 am, I finally started to slumber, then was jolted awake by a cold, wet patch on the bed.  The drain tube to the night bag had become disconnected from the catheter, letting urine freely flow onto the bedding.  Ugh. I'd had it with the Foley.  I knew I was supposed to leave it in for seven days after surgery.  Let's see, surgery was Friday.  Counting Friday, 1, 2, 3 ... yes, today was day 7.  Close enough. So at 5:30 am, I decided to remove my Foley catheter by myself.

A Foley catheter is held in place by an inflatable bulb inside the tip of the catheter, in the bladder.  That bulb is inflated by injecting saline into the balloon tip.  That bulb must be completely drained before the catheter can be removed.  I've never taken a Foley out by myself before, but I've watched it done lots of times, and I've also stayed at a Holiday Inn Express on occasion.  Here's how it is done:

1.  Get an empty 10 cc syringe with a small tip that fits into the secondary port of the Foley.  Hopkins helpfully put one of these in my bag of goodies after last Friday's surgery. 
2.  Release the valve on the port.
3.  The saline contained in the bulb at the end of the Foley inside the bladder will slowly fill the syringe.  Don't pull back on the syringe; let it fill by itself.
4. In theory, the bulb should be filled with 9-10 cc of saline.  But you never assume that, since trying to pull a Foley with even a partially filled bulb through a urethra is like pulling a lemon through a straw (or passing a very large kidney stone).  So after the syringe fills to 10 cc, take it off, drain it, then reconnect it, and see if any more saline comes out.  In my case, there was another 4 cc of saline in that bulb.  If you are an amateur like me, after it stops filling, very gently pull back on the syringe to see if anything else comes out (it won't). 
5.  Disconnect the syringe.  You're now ready to pull the Foley tube out of the neobladder, through the urethra, and out.  Take a couple of deep breaths.  Hope that all of the saline is really out of the bulb.  Take a couple of more deep breaths.  Grab onto the end of the Foley and notice that your hands are trembling.  More deep breaths.  Wonder if you should pull it out fast or slow.  Start to pull, whimpering quietly.  Notice that your urethra is slowly pushing the thing out on its own.  Wonder if you should wait or help it along.  More deep breaths.  Do a little of both.  Finally remove that alien probe from the orifice.  Whimper again.
6.  Sit in the hot tub for as long as you can.  This step is not optional.

So I've been at the office all day, editing more briefs and wondering why I'm doing it.  About an hour ago, I found myself staring at the screen in a torpor.  I kicked off my shoes, shut my door, shuffled over to my couch, and laid down.  Words to live by: when the going gets tough, take a nap. 

Mets Day 159 - Foley and me

I've been wearing a Foley catheter since Friday.  This is the sixth time that I've had a Foley since my cancer diagnosis, and I've never gotten used to it.  The worst part is securing the Foley tube so it doesn't suddenly shift and unexpectedly and painfully pulls the penis.  That is especially common when the velcro thigh strap that is supposed to secure the Foley tube to the leg loosens or starts to slide down the leg. When a thigh drain bag gets full, it is just a matter of minutes before it starts pulling on the Foley tube. 

I've had Foleys placed by four different doctors at three different hospitals - GW, Hopkins, and Chicago.  Only Chicago used an adhesive patch that sticks to the skin and can lock the Foley tube into place.  They use a Bard product called StatLock.  It's a very useful device, and using it makes wearing a Foley much easier.  After Friday's surgery, I emailed the Hopkins doctor and passed along my recommendation that he use it too.  (His entire response: "ok"). 

I don't sleep well while wearing a Foley catheter.  The convenience of having my neobladder automatically drained is not worth the tube and line snaking down to the night bag.  I have to be very careful about how I change positions in bed, since there are only certain ways I can roll over, and limited positions I can hold.  this is especially true without a StatLock.  Wearing a Foley is neither relaxing nor comfortable.

Each night since I have come home from Friday's surgery, the Foley catheter has become blocked with mucus, so I need to flush it out using saline and a 60 cc syringe.  It also happens on occasion during the day, although it seems to be less common probably because I am upright and moving around.

At times, urine leaks out around the Foley tube, especially when the Foley drain is blocked by mucus.  This morning I found that I had wet underwear due to urine leakage, which means the bedding needs to be changed. 

I can shower while wearing a Foley, but they advise not sitting in a tub (including a hot tub).  This morning I was so cranky and stiff, I decided to sit int he hot tub anyway.  I clamped the Foley shut and enjoyed a long soak, then used the jets to unkink my back. 

So now I'm at work, wondering why I came into the office.  I have a lot to do, but am not feeling at the top of my game.  My third year med student daughter just emailed me and said that she got her hands on a StatLock at the hospital where she is doing her rotations, so I'm going to meet her and get that helpful device. 

Mets Day 156 - Surgery at Hopkins

Here's a report on Friday's surgery at the Weinberg Center at Johns Hopkins. Hopkins is very efficient, more so than GW.  I arrived at 1, and waited less than 5 minutes between each of the pre-op events: check-in, registration review, back to pre-op, nurse review, IV placement, anesthesia review, doctor visit, then into the OR.  Before the procedure, I discussed it at length with Dr. Bivalacqua.  I told him how Dr. Frazier was reluctant to do this surgery because it would increase the risk of incontinence, and how he tried to dilate it on July 30.  I also described how I knew it had been slowly reforming, since I was unable to void normally, and how self-catheterizing was not always successful.  He said that dilation was not effective, and that trying to control the problem with catherterization was not a good long term-solution.  He was confident that surgery would help, but also said that the risks included increased incontinence (about 10%-20%), and that the stricture would re-form.  

After the surgery, we talked again.   Dr. Bivalacqua said that the stricture was above the sphincter, which was good, because the risks of incontinence increase dramatically if they start removing tissue around the sphincter location.  The doc sliced away a bit of the stricture, but was conservative, telling me that he can always take more out, but it's tough to add tissue back in.  He also met with Chelsea while I was emerging from anesthesia, and they had a good discussion about the procedure, and what I could expect.  

When I got home and was getting ready for bed, I found that the OR tech had left three of the EKG stickers on my torso -- one under each arm, and the third by my port.  At least they didn't leave anything inside my body (I think.) 

So now I have a Foley catheter in place, and it will be there for a week.  Ugh. Hopkins still has not starting using the adhesive Foley retention devices that Chicago uses.  Instead, they slapped a large hunk of tape on my thigh, and taped the Foley tube into place so it wouldn't slide.  Not only did they put the tape in a location that is not comfortable, but it's useless if I want to change to a thigh bag.  For as many surgeries as they do, I'm surprised they have not gotten with the program.  When the nurse at Hopkins removed my FOley after my surgery, he was all excited to see that adhesive strap, and kept it to show administration.  

Anyway, the doc says I can remove the Foley myself next week (!), and that no follow-up is needed for now.  I'll probably have Chelsea assist to make sure I don't pull out my urethra because the catheter bulb was not fully deflated.  After that, I will need to self-catheterize 2 times a day for two weeks, then once daily for another two weeks.  The point is to train the stricture to not re-form, which is why the Foley will be in there for so long, and why I'll need to catheterize so frequently.  We won't really know if it has worked for more than a month, and even then, there is a chance that the stricture could re-form, meaning I'd need to do this all over again.  Scar tissue tends to be unpredictable.

I'm not feeling a lot of pain.  There is some discomfort with the catheter, but that's to be expected.  I have the naproxin for non-narcotic pain relief as needed, and I'm also taking an anti-spasm drug to keep the neobladder from overreacting.  It has the interesting side effect of turning my urine bright orange.  Happy Halloween!  I bet that'll scare the little monsters.  

Mets Day 155 - The book of love

Last night Jennifer gave me what I think is the final 50th birthday present - a hardbound book of photographs and tributes from family, friends and colleagues.  It was assembled by Carolyn C., a long-time family friend (thank you!), with assistance and contributions from over 100 people.  It has pictures from throughout my life, and lots of memories and well-wishes.  What a wonderful gift! Jennifer explained that the publication kept getting pushed back as more people chimed in.  Carolyn finally imposed a deadline and brought it over yesterday; unfortunately, I was at work and missed her.  Dinner's on me, Carolyn!  This will be a treasured keepsake.  Thank you to all who contributed.

Jennifer just left for the airport to spend a week in Utah with her sister, Abby, and I'm about to leave for Hopkins for my surgery.  Chelsea will be my attending.  Here is a link to her blog recounting her recent 30-hour shift.  When I feel tired, I can read that, and then I feel exhausted. 

Mets Day 154 - Surgery tomorrow

Hopkins called yesterday and said that they had a slot open up tomorrow afternoon for the surgical procedure to remove the excess scar tissue from my urethra and neobladder neck.  It will be done by Dr. Trinity Bivalacqua, who I have met on several occasions and like.  This will be the procedure that Dr. Steinberg at U. Chicago recommended last week.  It's short notice, but we'll go with it.  It's will be an outpatient procedure.  I'll show up at about 1, go under anesthesia at about 3, be in the recovery room by 5, and be on the way home by 7 or so.  I'll have a Foley cathether over the weekend, and hopefully will have it removed on Monday.  Thereafter, we'll see how it goes. 

Figuring out whether we could do it this quickly involved a bit of a logistical scramble.  Jennifer is flying to SLC tomorrow to help her little sister who just had a baby.  Also, Garrett has several school commitments tomorrow.  Spencer already had committed to do other things that takes him out of town.  Fortunately Chelsea will be coming off a rotation tomorrow morning and will be able to assist me, and Kirsten can cover Garrett. 

After we figured all this out, I had to arrange to get an EKG, blood and urine work-ups yesterday, but my doc managed to work me in.  I'm hopeful this procedure will help my incontinence, but I've also been warned that I might have to have this procedure repeated more than once before the scar tissue learns to stop growing.  And sometimes it just doesn't work. 

I took Ambien again last night, but didn't sleep as well.  I kept waking up and having a hard time getting back to sleep.  Still, 5.5 hours is better than 4.  I'm going to keep trying to see what works best for me.