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. 

Mets Day 153 - Stricture + Ambien = Wet Dreams

Last night I tried catheterizing again -- it took a number of tries, and I finally was able to push the tip of the catheter through the stricture and hold it while urine drained out.  If I let go of the catheter, the stricture would push it back out and the urine flow would stop.  I then put on a Depends and took an Ambien -- I just picked up the prescription yesterday afternoon, and hoped that I could get some sleep.  I have never tried Ambien or any other sleeping pill before, so I did not know what to expect.  I fell asleep easily, and although I woke up several times when I felt a bit of urine spurt out, I was able to go back to sleep relatively quickly.  I don't remember having any dreams, but the luxury of getting more than four hours of sleep easily outweighed that. 

I woke up at around 7 am, stripped off the sodden Depends, and sat in the hot tub for a while.  I tried to decide how I felt.  I had fewer aches and pains, my brain seemed a little less foggy that it has for a while, but I did not feel totally refreshed.  I don't know if it is the result of many weeks of sleep deprivation, or if the Ambien interferes with REM sleep, or something else, but I'm going to continue taking it and hope my body can approach normalcy.       

Mets Day 152 - stricture study

For the past several days I can tell that the structure in my neobladder and urethra has been tightening the flow of urine.  Voiding has become increasingly difficult, and my Depends is increasingly sodden each morning.  I tried self-catheterizing last night and again this morning, and both times was unable to punch it past the stricture.  Last night, some bloody tissue came when I pulled out the catheter, so I guess I was a little too enthusiastic in trying the shove the thing in.  The stricture is about 10 to 11 inches in, and the urethra has some elasticity, so when I try to push, the urethra stretches out instead of letting the catheter push through.  After I'm done, I have a pain in the pelvis that is most similar to having been kicked in the crotch.  Sitting in the hot tub in a fetal position and moaning softly helps in the recovery. 

It's fun things like this that make me pause when people ask me how I'm doing.  No, you really don't want to know, and I don't feel like telling you.  

Today the scheduler at Johns Hopkins told me that Dr. Trinity Bivalacqua will do the surgery to scrape away the stricture.  Hopkins is working on scheduling the OR, and hopefully will let me know in the next couple of days.  I'll have to wear a Foley catheter again - oh, joy - but it will be worth it if the procedure works. 

In the meantime, I am trying to stumble by each day.  Jennifer just told me that I look exhausted.  If only I felt that good. 

Mets Day 147 - Stricture solution?

Yesterday I emailed Dr. Steinberg, who did my surgery in Chicago, summarized my incontience and sleep problems due to the stricture (the excessive scar tissue at the base of my neobladder and the urethra).  I also mentioned how my local urologist had tried to reopen the stricture by forcing a series of catheters through, but was reluctant to cut or cauterize the stricture due to concerns that it might increase the incontinence issues.  Dr. Steinberg promptly responded as follows:

I typically incise any scar tissue in the urethra under cystoscopic control in the operating room. I don’t think that dilation in the office is effective. . . . I think that there is more scar tissue, bladder neck contractures in patients treated with neoadjuvant chemotherapy and that a direct vision internal urethrotomy appears to work best. I will copy Drs Schoenberg and Bivalacqua to see if they can help you. Otherwise I would be happy for you to come to Chicago. It is an outpatient procedure.

Dr. Steinberg copied the Hopkins doctors (Schoenberg and Bivalacgua) on the email, and they quickly responded and said that they would be happy to take care of this. This reinforces what I already knew, but had disregarded because of proximity: when dealing with bladder cancer and neobladders, go to the doctors who specialize in it, which probably eliminates 99% of urologists. 

This procedure hopefully will resolve the problem with the stricture.  I'm not sure when it will take place, as I am waiting for it to be scheduled.  Knowing how these things work, they will put a Foley catheter in for a few days -- not something I look forward to, but I'll get through it again.  

Mets Day 146 - Disability decision

I've been grappling with the question of what should do with regard to returning to work.  For the past couple of months, I gradually have been increasing my time in the office, trying to return to normalcy, and to see if I can return to my prior level of performance notwithstanding my sleep deprivation.  So far, the answer is no.  I have found it very hard to stay focused on work.  Reading and retaining complex briefs, or analyzing patents, or doing much of the other stuff that I've been doing for 25 years, is now very difficult, if not impossible.  I have a major trial scheduled for next month, and I have had to cede primary responsibility to others, since I have no confidence that I will have received enough sleep the night before to be at my peak performance when examining a witness or making arguments to the court.  I am continuing to try to provide a supporting role, but have come to the conclusion that, unless things change, I am not going to be able to return to my role as a first chair patent litigator.

My firm has been paying me 100% of my compensation since I've had the surgery and recovery.  The firm self-insures its partners for six months, because the disability insurance policies that partners are required to obtain have a six month elimination period.  My trying to come back within those six months has no adverse effect on my disability eligibility. 

As I understand them, my disability insurance policies provide for a payout if, due to a medical issue, I am unable to continue to work doing what I had been doing.  It does not require me to be a unable to move or function; rather, the issue is whether or not I can perform in my chosen profession at the same level.  If my earnings fall off, say to 50% of what I was earning before, then the insurance will pay a 50% benefit.  Or if I find that I can't effectively function as a first chair patent litigator at all, then I will get a 100% benefit, even if I can do something else, like teach, or do volunteer work.  Payments continue to age 65.  The benefits are tax-free, since the policies were paid with post-tax money.  The amount of payments would be sufficient to live on if we do some adjustments to our expenses.  There might also be an option of trying to continue on with the firm in some administrative capacity, to help augment my income. I also have considered consulting for companies who own patents and are trying to figure out how to get value from them, but have not yet fleshed that out.  I also have considered doing a lot more volunteer work with my church and the community. 

Today I decided to put the wheels in motion to apply for disability insurance. The soonest it would take effect is in December; more likely with will be January 1, 2013. I want to make sure that I in fact will qualify for the benefits, a process that will take several months.  Knowing that will help guide me as I try to figure out what is best for me and my family. 

I continue to be appreciative of the support that I have received, and continue to receive, from my law firm.  The message consistently has been to do everything necessary for my physical recovery, and not to worry about the money.   I have been at other firms and have seen how they throw to the side partners who are afflicted wit health issues.  I am humbled and grateful that my firm has not kicked me to the curb, but has shown grace and support during this difficult time.  On this matter, at least, this firm exemplifies what a partnership should be.

Mets day 144 - 4 month post-surgery report

Four months post-surgery snapshot:

1.  No change on the detection of cancer, since my last scans were in early July.  My next scans will be sometime in October, so I won't know anything more before then.  I've read about others with metastatic cancer have tensed up or gotten more irritable in the weeks before their scans, so I have been mindful of trying to avoid that.

2.  The scars from the surgery have fully healed.  I had another massage by Mike Taylor who worked more on both the primary incision and the SPT incision to break up any connecting scar tissue under the incisions, and have had no recent pain associated with either scar.  On the other hand, I have noticed increase pain in both shoulders, especially when I wake up.  I suspect that while sleeping I am laying on my side in such a way that is causing the pain, but haven't quite figured out how to remedy it.  Mike worked extensively on my shoulders and suggested that I stretch by holding the door frame with both hands and leaning forward.

3.  Sometimes I think I'm feeling stronger than I really am.  This past weekend, Garrett persuaded me to try out a new tube that we bought.  Getting on to and holding on while being pulled by the boat and bumping into Garrett took a lot more strength and energy that I remembered being necessary.  I bailed out after a few minutes.  At 2 am the next morning, I woke up both because I had to pee, and because my shoulders and pechtorals were so sore that it hurt to lay down.  I migrated to the recliner and tried to doze the rest of the night.   I keep forgetting I'm a senior citizen with cancer, and need to act like it.  Honey, pass me my walker and false teeth, will you?

4.  I'm still having difficulties with nighttime continence.  I'm currently investigating options to deal with my recurring stricture, which include watchful waiting (aka doing nothing), regular self-catheterizations, more physical therapy, or additional surgery (by cystoscope). 

5.  I still wear Depends each night, I still wake up every time I start to leak, I rarely get more than 4 hours of sleep each night, and still am unable to feel like I am functioning at full capacity most days.

6.  The only pain I currently feel is due to my sore shoulders.  Advil usually is enough.

7.  Vocal cords are fine.  Hair remains thin.

8.  Appetite is somewhere between normal and ravenous.  I've gained weight in the past month -- of course, the moveable feast that was my birthday helped (or hurt, depending on your perspective).  I must confess that my sense of discipline has been lax of late, since for several months my appetite was smaller than usual.  I think I need start paying more attention to what I eat, instead of eating when I was hungry, which is the advise I was given post-surgery. 

9.  No change on the impotence front.  The vacuum pump people called me today to say that my insurance would pay 100% for their product -- I guess the rep that I met with several weeks ago apparently had done all the paperwork and put in the order.  So I said go ahead and send it.  Jennifer says she can (ahem) hardly wait.