I was browsing for updated information on bladder cancer, and stumbed across a 2007article by Jane Brody in the New York Times, titled Thriving After Life's Bum Rap. It talked about how people living with cancer had found increased joy in life, and had gained new insights solely as a result of cancer. The article reflected in many ways the experience that I have had in my ongoing battle.
I still battle with sleep deprivation each day. I have no idea how I will feel each day, and find that my tank of energy is quickly depleted. I monitor work emails, chime in on strategy, participate in occasional conference calls, and review and edit briefs as needed, but rarely go into the office. More recently I have been working on various home improvement projects and long-deferred maintenance. Tearing stuff apart or putting it back together does not take the same level of mental concentration as does complex intellectual property disputes. I can work on a project as I have energy, then sit down and doze, or read, or whatever. I have the energy of an 80 year old, it seems.
In May, I have appointments with two different urologists who specialize in incontinence. I'm curious to see what they recommend. Until then, I wait patiently and try to find joy in each day.
Monday, April 22, 2013
Friday, April 12, 2013
Mets Day 365 - First anniversary of my mets diagnosis
365 days have passed since I had the CT scan that showed my cancer had
spread outside of my bladder. There was a period of time that I
wondered if I would see this milestone. My odds of survival gradually
creep higher with each day, but they are still long. I have been
liberated by letting go of my cancer battle, and placing my life in the
hands of the Lord. I no longer worry about whether I will have
secondary tumors form. If it happens, so be it. Cancer does not
govern my life.
I still struggle with the side effects of my balky neobladder. Unlike cancer, I have not surrendered with regard to therapy for my neobladder and incontinence, because there is still some medical options for addressing that. Perhaps that reflects the limits of my faith -- only when there is nothing more that man can do, do I place my trust in God. If that is true -- and I'm still pondering it -- it shows how weak my faith really is, and how much more I need to grow.
I am grateful for each day, and for my new perspective on living. I would like to say that ever minute of every day is well-spent, but that would not be accurate. I still watch ESPN on occasion, and at times have not shown my gratitude to family, friends, and colleagues. I try to be more mindful, but it is so easy to slip into old habits. I find my muscle memory to be surprising -- I would have expected that cancer would have ingrained a mightier change upon my soul. It is more accurate to say that living with cancer continues to teach me lessons that I am still learning.
I still struggle with the side effects of my balky neobladder. Unlike cancer, I have not surrendered with regard to therapy for my neobladder and incontinence, because there is still some medical options for addressing that. Perhaps that reflects the limits of my faith -- only when there is nothing more that man can do, do I place my trust in God. If that is true -- and I'm still pondering it -- it shows how weak my faith really is, and how much more I need to grow.
I am grateful for each day, and for my new perspective on living. I would like to say that ever minute of every day is well-spent, but that would not be accurate. I still watch ESPN on occasion, and at times have not shown my gratitude to family, friends, and colleagues. I try to be more mindful, but it is so easy to slip into old habits. I find my muscle memory to be surprising -- I would have expected that cancer would have ingrained a mightier change upon my soul. It is more accurate to say that living with cancer continues to teach me lessons that I am still learning.
Wednesday, April 3, 2013
Mets day 356 - A talk with my Uro
Today I had a long office visit with my local urologist. He's associated with GWU. I thought I was going to have a cystoscopy, but apparently when he heard that I had been able to self-catheterize regularly, he decided that he didn't need to do a cysto. Instead, we reviewed in detail my ongoing nighttime incontinence, and what to do about it. Interestingly, he said that he recently had decided to steer patients away from neobladders, because so many have ongoing incontinence issues.
I explained how I had tired every type of recommended neobladder management, including not drinking any fluids after 6 pm, self-catheterizing each night, regularly getting up at night to void, taking Ambien or Lunesta, etc., but I was still leaking, which would in turn jolt me awake. He said that, with some people, continence just didn't happen. I explained how my ongoing incontinence had essentially forced me to stop my law practice, because of the sleep deprivation. I told him I was open to any solution.
He identified the following options, in ascending order of intervention:
1. Do nothing for now, and see if it gets better with time (been there, done that)
2. Do kegels and see if that works (been there, done that)
3. Consider a drug option, such as Cymbalta (Duloxetine). He referred me to his partner, who specializes in incontinence, and is more familiar with the latest studies on this option.
4. Consider surgery, such as a sling, pouch, or an artificial urinary sphincter. Again, for those, he referred me to his partner.
5. Consider changing the neo to an IC or maybe a continent pouch.
I made an appointment to meet with his partner to discuss options 3 and 4. The appointment is in a month. He didn't want to give me a script for Cymbalta in the meantime, and I didn't press the issue -- if my doc isn't comfortable with prescribing a drug, I'm not going to press it.
So I'll just keep on grinding on in my grey haze until I am able to meet with the incontinence specialists at both Hopkins and GWU in early May, get both of their opinions, then decide what to do.
I explained how I had tired every type of recommended neobladder management, including not drinking any fluids after 6 pm, self-catheterizing each night, regularly getting up at night to void, taking Ambien or Lunesta, etc., but I was still leaking, which would in turn jolt me awake. He said that, with some people, continence just didn't happen. I explained how my ongoing incontinence had essentially forced me to stop my law practice, because of the sleep deprivation. I told him I was open to any solution.
He identified the following options, in ascending order of intervention:
1. Do nothing for now, and see if it gets better with time (been there, done that)
2. Do kegels and see if that works (been there, done that)
3. Consider a drug option, such as Cymbalta (Duloxetine). He referred me to his partner, who specializes in incontinence, and is more familiar with the latest studies on this option.
4. Consider surgery, such as a sling, pouch, or an artificial urinary sphincter. Again, for those, he referred me to his partner.
5. Consider changing the neo to an IC or maybe a continent pouch.
I made an appointment to meet with his partner to discuss options 3 and 4. The appointment is in a month. He didn't want to give me a script for Cymbalta in the meantime, and I didn't press the issue -- if my doc isn't comfortable with prescribing a drug, I'm not going to press it.
So I'll just keep on grinding on in my grey haze until I am able to meet with the incontinence specialists at both Hopkins and GWU in early May, get both of their opinions, then decide what to do.
Monday, April 1, 2013
Mets Day 354 - Surviving spring break
We spent last week with the folks in Florida. It was nice to visit them, as well as my sister and brother-in-law. We relaxed, caught up, played games, went to the beach, read, napped, ate good food, discovered the Jupiter Donut Factory (a most dangerous place), drove the kids and their friends to Universal Studios in Orlando, dropped them off, and spent the day at the Peabody Orlando Spa, and in general had a nice time. There were even a couple of nights when I got more than 5 hours of sleep. I'll take it when I can get it.
On Wednesday I'll have another cystoscopy and discussing with my local urologist. He'll look for evidence of additional scarring in the urethra and try to further determine why I'm still leaking. I'll probably get a prescription for Cymbalta and see if that makes any difference.
Spring is coming and the honey-do list is getting dusted off. The main concern is getting the basement ready for Chelsea and Josh -- their Arlington condo went under contract in less than a week for better than the asking price. They'll probably be moving in around mid-May. There are lots of other things to do on the chore list, since for some reason home maintenance was not at the top of our worry list for the past year or so. I'm trying to figure out why that was.
I'm still waiting for one insurance company to make its decision of the disability benefits. We've been getting by with the payments from the other insurance policies, but it will be nice to have the other check when it comes in. Of course, the insurance company is dragging its feet, since they are loathe to pay out money. But it's just a matter of time.
On Wednesday I'll have another cystoscopy and discussing with my local urologist. He'll look for evidence of additional scarring in the urethra and try to further determine why I'm still leaking. I'll probably get a prescription for Cymbalta and see if that makes any difference.
Spring is coming and the honey-do list is getting dusted off. The main concern is getting the basement ready for Chelsea and Josh -- their Arlington condo went under contract in less than a week for better than the asking price. They'll probably be moving in around mid-May. There are lots of other things to do on the chore list, since for some reason home maintenance was not at the top of our worry list for the past year or so. I'm trying to figure out why that was.
I'm still waiting for one insurance company to make its decision of the disability benefits. We've been getting by with the payments from the other insurance policies, but it will be nice to have the other check when it comes in. Of course, the insurance company is dragging its feet, since they are loathe to pay out money. But it's just a matter of time.
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