Friday afternoon, Jennifer, Kirsten, my mom and stepdad drove down to our cabin at Lake Anna. Spencer left for a weekend at Ocean City with friends. I waited for Garrett to return home from scout camp on Saturday morning. At about 10:30 pm, a very intense storm blew past, with abotu 30 minutes of what seemed to be hurricane-force winds and driving rain. (The weather service later reported that winds gusts topped 80 mph in nearby Reston.) The power went out. I found the little headlamp and re-read Ender's Game until I fell asleep.
Saturday morning I surveyed the damage. We had the tops of two trees down on our lawn, and another in our pool area, damaging another section of pool fence. The lawn was covered with branches and leaves. Five of our adirondack chairs on our deck were broken; two had been blown completely off the deck. Other than that, everything looked ok. Nothing needed immediate action. Power lines were down in several places on our lane. The damage resembled that after Hurricane Isabel in 2003, when we were without power for six days.
Although the storm also blew over Lake Anna, they still had power there. Jennifer told me to bring the chain saw as there were a couple of trees down on the road in. So I loaded up the Jeep with the saw and all the food I could fit from the fridge and freezer, got Garrett, and drove down. The plan is to stay at the lake until power is restored, which may not be until the end of the week. No need to sit in a house with no power, no AC, and no water pressure from the well. I'm just glad everyone is ok and there was no major physical damage.
Saturday, June 30, 2012
Tuesday, June 26, 2012
Mets Day 75 - priorities
I've been giving lots of thought lately to my priorities, in terms of the use of my time. In particular, I have been contemplating my work-life balance. I have had a number of conversations on this topic with doctors, my law partners, members of my church, friends, and family. Because I am still mastering my neobladder, I have not yet made a decision. But I wanted to write about some of the things that I have been considering.
First, to me, work has always been a means, and never an end. I never intended to die while actively practicing law. Law was and is a means to provide for my family. I have the good fortune to have done reasonably well, and to enjoy what I do. I enjoy supporting my clients. But I always expected that, at some point, I would leave the full-time practice of law and do other things, such as humanitarian service, or travel, or spend time with my family. There never is an ideal time to do that.
Second, because I am the beneficiary of various disability insurance plans, I am fortunate to be in a position where I do not need to work to be able to provide continued support to my family. I would certainly be making less money if I was on full disability, but I think that I would be able to make ends meet. I need to actually run the numbers to find out the impact - something I have not yet done.
Third, the high likelihood that I will not survive for more than five years helps focus my mind on the fact that, if there are things that I want to do in life, I'd better do them sooner rather than later.
Fourth, while my oldest is married and on her own, I still have teen-aged children at home -- a rising high school senior, and a rising high school freshman, as well as my college-aged son who is living at home what attending school locally. Their schedules and commitments limit the flexibility that empty-nesters might have to travel or do whatever. In addition, Jennifer has been planning to start classes on her Master's in Social Work. In other words, if I was to retire on disability, I'd need to figure out what I would be doing since my kids are still in school.
Of all the people with whom I have spoken, not one has advised me to continue to work full time, if I don't need to from a financial standpoint. Most of them have asked, what would I do instead of working? I'm still puzzling through that, and do not yet know the answer. I don't have a bucket list, and have no desire to create one. I have some things I would like to do, such as ensuring that my estate planning documents are up-to-date, giving Jennifer a binder summarizing our financial situation, and perhaps pulling together my disparate pieces of my life story. I expect that I'll be focusing on those in the near future, to the extent I am able. Maybe doing that will tell me whether I'm able to return to work, given my ongoing sleep deprivation.
I have much more to say on this topic, but it's midnight and I'm tired. Readers, your thoughts?
First, to me, work has always been a means, and never an end. I never intended to die while actively practicing law. Law was and is a means to provide for my family. I have the good fortune to have done reasonably well, and to enjoy what I do. I enjoy supporting my clients. But I always expected that, at some point, I would leave the full-time practice of law and do other things, such as humanitarian service, or travel, or spend time with my family. There never is an ideal time to do that.
Second, because I am the beneficiary of various disability insurance plans, I am fortunate to be in a position where I do not need to work to be able to provide continued support to my family. I would certainly be making less money if I was on full disability, but I think that I would be able to make ends meet. I need to actually run the numbers to find out the impact - something I have not yet done.
Third, the high likelihood that I will not survive for more than five years helps focus my mind on the fact that, if there are things that I want to do in life, I'd better do them sooner rather than later.
Fourth, while my oldest is married and on her own, I still have teen-aged children at home -- a rising high school senior, and a rising high school freshman, as well as my college-aged son who is living at home what attending school locally. Their schedules and commitments limit the flexibility that empty-nesters might have to travel or do whatever. In addition, Jennifer has been planning to start classes on her Master's in Social Work. In other words, if I was to retire on disability, I'd need to figure out what I would be doing since my kids are still in school.
Of all the people with whom I have spoken, not one has advised me to continue to work full time, if I don't need to from a financial standpoint. Most of them have asked, what would I do instead of working? I'm still puzzling through that, and do not yet know the answer. I don't have a bucket list, and have no desire to create one. I have some things I would like to do, such as ensuring that my estate planning documents are up-to-date, giving Jennifer a binder summarizing our financial situation, and perhaps pulling together my disparate pieces of my life story. I expect that I'll be focusing on those in the near future, to the extent I am able. Maybe doing that will tell me whether I'm able to return to work, given my ongoing sleep deprivation.
I have much more to say on this topic, but it's midnight and I'm tired. Readers, your thoughts?
Saturday, June 23, 2012
Mets Day 72 - scan, PT, info, doc, repeat
In the past couple of days I had a scan, physical therapy, went to an update session on metastatic bladder cancer, and and a long chat with the doctor. No earth-shattering news, just incremental progress.
The scan was an ultrasound of my kidneys and ureters to determine if there was any scarring caused by the stents. Scarring is bad because it can eventually lead to blockages. Fortunately, everything looked fine on the scan.
I also visited with the physical therapist. We reviewed my pee chart -- a one week tracking of every time I voided and leaked, and occasional measurements of how much I voided. I averaged around 300-400 ml; the maximum was 750 ml, which was after I had been out for a while and had consumed 3 or 4 big gulps of Diet Coke. This told the PT that my neobladder had the capacity to hold as much urine as a regular bladder; the issue now is control, especially during the night. She said that the best was to gain that control was to continue doing kegels, so the pelvic floor muscles would be strong enough to hold while the rest of the body was relaxed. She said that there was little more that she could add, suggesting that future appointments would be a waste of time.
Thursday night, Jennifer and I attended a presentation by Dr. Apolo of NIH. She gave us an update on bladder cancer research, some of which was from the recent annual meeting of the American Society of Clinical Oncologists. She reiterated how bladder cancer was an orphan cancer, with underfunded research and poor patient advocacy. She noted how the FDA had not approved any drugs to treat bladder cancer for over 25 years. She explained that bladder cancer was a very tricky and adaptable carcinoma, with multiple types of mutations, and the ability to shift mutations as it moved from one site to another. This meant that there could be no single drug that would control this type of cancer, because each mutation typically would respond to a different type of drug. She summarized recent research, and how several promising studies had failed to show any positive effect on metastatic bladder cancer. The bottom line is that there is still no cure for bladder cancer, none on the horizon, and no proven second line therapy for someone like me who has failed first line chemotherapy.
On Friday morning, I met with Dr. Harold Fraizer, with GW. He's a partner of Dr. Fred Hendricks, who did my initial diagnosis and both TURBTs. Dr. Hendricks does not do neobladders, and suggested that I follow up with Dr. Fraizer, since he is more knowledgeable about neobladders. So now Dr. Fraizer is my local urologist. Here's my list of issues that I put in my calendar that I wanted to discuss with Dr. Fraizer:
SPT healing
Abdominal pain
Pain mgmt/script
Nighttime continence/fuzziness
External Cath?
CT script
potency
Clinical trials
Stage IV prognosis
Work
We spent the most time discussing my ongoing pain, both around my SPT scar, and in my lower back. Dr. Fraizer said that was unusual, and wanted to make sure I was not having fluid buildup in my abdominal area. He also gave me a prescription for heavy-duty naproxin, which he said was better than the percoset or valium for pain management. He wants me to have a CT scan and a bone scan, which is scheduled for July 2.
As for nighttime incontinence, he said that there were 5 options: (1) doing kegels and strengthening the pelvic floor to extend the time; (2) waking up on a schedule; (3) wearing a diaper; (4) putting in an internal catheter; (5) wearing an external catheter - sort of like a condom that connects to a nighttime drain bag. I've done 1-4 (I don't want to go back to an internal catheter), so I'm going to focus on 1, while continuing to do do 2 and 3. I will look into 5 to see if that is a temporary option.
We didn't talk much about impotence. He said that was a much longer conversation. He gave me a script for Cialis, but said to make another appointment and we'd talk some more.
We didn't talk about the last three things on my list, either. It can wait until next time.
Oh, I also checked on the status of the Dendreon trial through Fox Chase. The delay is with Dendreon. It could be 3-6 weeks before I get rolling on that. So we're going to go forward in getting the scans outside of the trial, and finding out if there is any evidence of metastases. That's what the July 2 scan should tell us. Cross your fingers!
The scan was an ultrasound of my kidneys and ureters to determine if there was any scarring caused by the stents. Scarring is bad because it can eventually lead to blockages. Fortunately, everything looked fine on the scan.
I also visited with the physical therapist. We reviewed my pee chart -- a one week tracking of every time I voided and leaked, and occasional measurements of how much I voided. I averaged around 300-400 ml; the maximum was 750 ml, which was after I had been out for a while and had consumed 3 or 4 big gulps of Diet Coke. This told the PT that my neobladder had the capacity to hold as much urine as a regular bladder; the issue now is control, especially during the night. She said that the best was to gain that control was to continue doing kegels, so the pelvic floor muscles would be strong enough to hold while the rest of the body was relaxed. She said that there was little more that she could add, suggesting that future appointments would be a waste of time.
Thursday night, Jennifer and I attended a presentation by Dr. Apolo of NIH. She gave us an update on bladder cancer research, some of which was from the recent annual meeting of the American Society of Clinical Oncologists. She reiterated how bladder cancer was an orphan cancer, with underfunded research and poor patient advocacy. She noted how the FDA had not approved any drugs to treat bladder cancer for over 25 years. She explained that bladder cancer was a very tricky and adaptable carcinoma, with multiple types of mutations, and the ability to shift mutations as it moved from one site to another. This meant that there could be no single drug that would control this type of cancer, because each mutation typically would respond to a different type of drug. She summarized recent research, and how several promising studies had failed to show any positive effect on metastatic bladder cancer. The bottom line is that there is still no cure for bladder cancer, none on the horizon, and no proven second line therapy for someone like me who has failed first line chemotherapy.
On Friday morning, I met with Dr. Harold Fraizer, with GW. He's a partner of Dr. Fred Hendricks, who did my initial diagnosis and both TURBTs. Dr. Hendricks does not do neobladders, and suggested that I follow up with Dr. Fraizer, since he is more knowledgeable about neobladders. So now Dr. Fraizer is my local urologist. Here's my list of issues that I put in my calendar that I wanted to discuss with Dr. Fraizer:
SPT healing
Abdominal pain
Pain mgmt/script
Nighttime continence/fuzziness
External Cath?
CT script
potency
Clinical trials
Stage IV prognosis
Work
We spent the most time discussing my ongoing pain, both around my SPT scar, and in my lower back. Dr. Fraizer said that was unusual, and wanted to make sure I was not having fluid buildup in my abdominal area. He also gave me a prescription for heavy-duty naproxin, which he said was better than the percoset or valium for pain management. He wants me to have a CT scan and a bone scan, which is scheduled for July 2.
As for nighttime incontinence, he said that there were 5 options: (1) doing kegels and strengthening the pelvic floor to extend the time; (2) waking up on a schedule; (3) wearing a diaper; (4) putting in an internal catheter; (5) wearing an external catheter - sort of like a condom that connects to a nighttime drain bag. I've done 1-4 (I don't want to go back to an internal catheter), so I'm going to focus on 1, while continuing to do do 2 and 3. I will look into 5 to see if that is a temporary option.
We didn't talk much about impotence. He said that was a much longer conversation. He gave me a script for Cialis, but said to make another appointment and we'd talk some more.
We didn't talk about the last three things on my list, either. It can wait until next time.
Oh, I also checked on the status of the Dendreon trial through Fox Chase. The delay is with Dendreon. It could be 3-6 weeks before I get rolling on that. So we're going to go forward in getting the scans outside of the trial, and finding out if there is any evidence of metastases. That's what the July 2 scan should tell us. Cross your fingers!
Wednesday, June 20, 2012
Mets Day 69 - two steps backwards
The past few days have been no fun. I really did a number on my abdomen on Thursday, and have been in constant pain since then. Sometime it's just a 2 or 3 on the 1-10 scale, but at other times it is a 6 or 7. Evenings and nights are worst. It is very difficult to get comfortable in bed. Getting 90 minutes of sleep at a time is fortunate. The acute pain is slowly dissipating, so I know my body is recovering, but the fog has been denser this past week. I have appointments with my physical therapist tomorrow and my urologist on Friday, and managing this pain will be one of the items on the agenda.
On Monday, Jennifer and I joined our good friends to listen to Cynthia do some jazz singing. She was wonderful! Unfortunately, soon after she finished and while others were singing, my pain meter spiked and we had to leave early. Lesson learned: Don't try outings without pain meds. (BTW, I've found Percoset is more effective than Vicodin or Tramadol for this pain.)
No word yet from Fox Chase re the Dendreon trial. My schedule remains uncertain pending the ability to get an effective amount of sleep, and the clinical trial picture is clarified.
This Saturday my Mom and stepdad will be joining us for a couple of weeks. It's always good to spend time with them. Next week, Jennifer and Kirsten will be at girl's camp, and Garrett will be a scout camp, so it will just be me, Spencer, and my folks at home. We hope to get away to the lake the last weekend of June - I hope I'm feeling better by then.
On Monday, Jennifer and I joined our good friends to listen to Cynthia do some jazz singing. She was wonderful! Unfortunately, soon after she finished and while others were singing, my pain meter spiked and we had to leave early. Lesson learned: Don't try outings without pain meds. (BTW, I've found Percoset is more effective than Vicodin or Tramadol for this pain.)
No word yet from Fox Chase re the Dendreon trial. My schedule remains uncertain pending the ability to get an effective amount of sleep, and the clinical trial picture is clarified.
This Saturday my Mom and stepdad will be joining us for a couple of weeks. It's always good to spend time with them. Next week, Jennifer and Kirsten will be at girl's camp, and Garrett will be a scout camp, so it will just be me, Spencer, and my folks at home. We hope to get away to the lake the last weekend of June - I hope I'm feeling better by then.
Saturday, June 16, 2012
Mets Day 65 - consequences of my stupidity
After the adrenaline wore off from Thursday's accident, I realized I had strained or torn my abdominal muscles when I was chasing the car, yanking open the door, jerking up the emergency brake, then absorbing the impact. I suspect that my newly knit-together muscles may have torn, and in particular, the still-healing SPT scar had been torn from the underlying muscle. By Thursday evening, I was in more pain then ibuprofen could handle. I took two Tramadol at about 9 pm, but they did nothing. At 10:30 pm I took two Vicodin, and it took nearly an hour for those to kick in. I was seriously considering going to the ER before the drugs started working. As it was, it was a hard night. I could not get comfortable in bed, or in the recliner, or anywhere else. Sleep was out of the question. At about 3:30 am I went into the hot tub and found the buoyancy of the water gave great relief. I fell asleep, and did not wake until dawn broke at about 5:45 am. Bonus points: I didn't have to worry about wetting the bed! (I did throw in some extra chlorine, however.)
Friday I was pretty groggy and punchy. I did manage to sell the wrecked car to a student who was taking an auto body class at the local community college, and found another car that Chelsea and Josh approved of. I mostly migrated between the hot tub, and a recliner with the heating pad on my abdomen. Every act of sitting up or twisting was painful - it was like the week after surgery all over again.
Friday evening Luis, one of the friars from Chicago, visited us and stayed overnight. He had been attending a week-long conference in Philadelphia, and came down to DC to visit some of his friends from when he was stationed here. It was nice to visit with him, and be reminded of his gentle devotion and service.
Last night was marked by slowly diminishing pain, but also by the inability to get comfortable. I was unable to stay in any single position or location for more than 90 minutes - alternating between my bed, the recliner, and the hot tub, where I spent more than 4 hours overnight. (I have it turned down to 100 degrees so it does not dehydrate me.) Not the most restful of nights. I took several naps today, but still feel exhausted. I hope I can get a decent night's sleep tonight. I took a couple of Percosets with Tylenol, and hope that will block the pain enough for me to get some rest.
Friday I was pretty groggy and punchy. I did manage to sell the wrecked car to a student who was taking an auto body class at the local community college, and found another car that Chelsea and Josh approved of. I mostly migrated between the hot tub, and a recliner with the heating pad on my abdomen. Every act of sitting up or twisting was painful - it was like the week after surgery all over again.
Friday evening Luis, one of the friars from Chicago, visited us and stayed overnight. He had been attending a week-long conference in Philadelphia, and came down to DC to visit some of his friends from when he was stationed here. It was nice to visit with him, and be reminded of his gentle devotion and service.
Last night was marked by slowly diminishing pain, but also by the inability to get comfortable. I was unable to stay in any single position or location for more than 90 minutes - alternating between my bed, the recliner, and the hot tub, where I spent more than 4 hours overnight. (I have it turned down to 100 degrees so it does not dehydrate me.) Not the most restful of nights. I took several naps today, but still feel exhausted. I hope I can get a decent night's sleep tonight. I took a couple of Percosets with Tylenol, and hope that will block the pain enough for me to get some rest.
Thursday, June 14, 2012
Mets Day 63 - not quite ready for prime time
If I needed any reminder that my brain is still fogged, a couple of incidents in the past couple of days have put that to rest. I had a doctor's appointment for yesterday afternoon, so I came into the office and visited with several people, then walked over to my appointment. The receptionist patiently explained to me that my appointment was for July 13, not June 13. I was certain it was for yesterday. It both bugged and concerned me that I failed to understand what I had been told when the appointment was made a week or so ago. (I managed to reschedule the appointment for Friday June 22.)
Last night, I managed to get about 4 hours of uninterrupted sleep, so one would think that I would be more alert than usual, right? Judge for yourself. I had volunteered to get my daughter's recently purchased used car inspected, and today I went out and took care of it, as well as running a couple of other errands. I came home, parked the car in the driveway, put the manual transmission in gear (I thought), gathered my stuff and was walking into the house when I noticed that it was starting to roll off the driveway and down the grass towards the pool. I ran over yanked open the door and jerked up the emergency brake, but it was too late. The car crashed through the fence and rammed a tree. Christmas card photo follows:
Stupid of me to fail to put it into gear (or maybe I knocked it out of gear when getting my stuff), stupid of me to not set the emergency brake, and stupid of me to jump into a moving car to try to stop it. Or maybe I' just more fogged than I realize. So now the car is for sale here on Craigslist. I'll make you a good deal . . .
There's an early Tom Hanks B movie called "Joe versus the Volcano" where he is diagnosed with a "brain cloud". I know the feeling.
Last night, I managed to get about 4 hours of uninterrupted sleep, so one would think that I would be more alert than usual, right? Judge for yourself. I had volunteered to get my daughter's recently purchased used car inspected, and today I went out and took care of it, as well as running a couple of other errands. I came home, parked the car in the driveway, put the manual transmission in gear (I thought), gathered my stuff and was walking into the house when I noticed that it was starting to roll off the driveway and down the grass towards the pool. I ran over yanked open the door and jerked up the emergency brake, but it was too late. The car crashed through the fence and rammed a tree. Christmas card photo follows:
Stupid of me to fail to put it into gear (or maybe I knocked it out of gear when getting my stuff), stupid of me to not set the emergency brake, and stupid of me to jump into a moving car to try to stop it. Or maybe I' just more fogged than I realize. So now the car is for sale here on Craigslist. I'll make you a good deal . . .
There's an early Tom Hanks B movie called "Joe versus the Volcano" where he is diagnosed with a "brain cloud". I know the feeling.
Monday, June 11, 2012
Mets Day 60 - weekend with the family
I spent last weekend with the family. On Friday, all seven of of us gathered at Lake Anna - the first time I'd been there since my cancer diagnosis eight months ago. The grass around the lake house was knee high, several small trees had fallen on the property, the batteries on the boat, jet ski, and riding mower were dead, and the starter motor on the boat quit working. All of that was eventually remedied, and we enjoyed a quiet and relaxing time on the nuclear-warmed water (92 degrees!) or playing games at the house. We enjoy our time there in part because we deliberately have avoided installing internet or TV connections, which helps us be more interactive. Whether it's because of my cancer, or because my kids are maturing, we are able to relax and enjoy our time with each other, with everyone doing their part to make the weekend stress-free.
On Friday morning, I woke up with a lower back ache, which was unusual. It persisted during the day and over the weekend, causing me to wear heat packs and take Ibuprofen. Even thought I knew it was just a muscle cramp, I had a hard time ignoring the little voice in the back of my mind whispering that the cancer had invaded my spine. I never have been prone to hypochondria or persistent medical worries, so that was a new experience for me. What will come, will come. I don't want to dread or fear each day, wondering when or if the next shoe will drop. A life paralyzed by fear of the unknown is not much of a life.
I've been working on kegels and trying to improve on the nighttime incontinence. I think it's going to be a slow journey. I still wake up several times a night, and find it hard to get back to sleep. If I can manage it, I delay going to bed until after midnight (which is unusual for me), so I have to get up only two times instead of three or four. The net effect is that my sleeping pattern is being changed by neobladder, and I'm still getting used to it.
This week I hope to hear from Fox Chase to see if I've been accepted into the Dendreon clinical trial. It's likely that I will be. Fox Chase has asked that I hod off on any CT or MRI scans until they know whether I'm in, because they want to do them all. As a result, I have no way of knowing whether my cancer has spread to any distant locations, or is quiescent.
While we were on the water, I plugged in David Bowie. When "Five Years" came on, I announced that was my new theme song. I guess the rest of the family didn't appreciate my humor. At least it was better than the Stones' "Paint it, Black."
I do find myself more appreciative of many things in life that before I might have taken for granted. Each day, I am grateful for another day of life, and everything that it brings. Cancer has taught me to have a greater sense of gratitude.
On Friday morning, I woke up with a lower back ache, which was unusual. It persisted during the day and over the weekend, causing me to wear heat packs and take Ibuprofen. Even thought I knew it was just a muscle cramp, I had a hard time ignoring the little voice in the back of my mind whispering that the cancer had invaded my spine. I never have been prone to hypochondria or persistent medical worries, so that was a new experience for me. What will come, will come. I don't want to dread or fear each day, wondering when or if the next shoe will drop. A life paralyzed by fear of the unknown is not much of a life.
I've been working on kegels and trying to improve on the nighttime incontinence. I think it's going to be a slow journey. I still wake up several times a night, and find it hard to get back to sleep. If I can manage it, I delay going to bed until after midnight (which is unusual for me), so I have to get up only two times instead of three or four. The net effect is that my sleeping pattern is being changed by neobladder, and I'm still getting used to it.
This week I hope to hear from Fox Chase to see if I've been accepted into the Dendreon clinical trial. It's likely that I will be. Fox Chase has asked that I hod off on any CT or MRI scans until they know whether I'm in, because they want to do them all. As a result, I have no way of knowing whether my cancer has spread to any distant locations, or is quiescent.
While we were on the water, I plugged in David Bowie. When "Five Years" came on, I announced that was my new theme song. I guess the rest of the family didn't appreciate my humor. At least it was better than the Stones' "Paint it, Black."
I do find myself more appreciative of many things in life that before I might have taken for granted. Each day, I am grateful for another day of life, and everything that it brings. Cancer has taught me to have a greater sense of gratitude.
Thursday, June 7, 2012
Mets Day 56 - PT for neobladders
I had my first appointment with the physical therapist today. I was expecting to receive the collective wisdom of the medical community on training neobladders, how best to fully void, and all of the secret tricks to mastering continence. I should have known better. According to this PT, there are no one-size fits-all set of rules to neobladder training. Each patient is different, and I need to find what works for me.
As for the tricks of draining a neobladder, the PT said that techniques include squeezing the stomach and abdominal muscles, holding my breath and lightly bearing down, relaxing all muscles and letting gravity do its thing, sitting and raising the feet to further relax the muscles, and externally pushing on where the neobladder is located. I'd already tried most of these, and found that not all work for me. I have found that I need to sit while voiding, since whatever muscles I'm using are no replacement for the detrusor muscle in the bladder, and the days of a strong flow are gone. That apparently is typical of neobladder patients.
As for mastering continence, she said that would be improved by strengthening the pelvic floor muscles. Apparently, I need to work on both the ability to stop my flow in mid-stream, and generally strengthening the duration of my ability to squeeze those muscles. The exercise is the male equivalent of the kegel exercise - clenching, then releasing, the pelvic floor muscles. I am to do exercised about 5 times a day consisting of a series of 10 quick clench and release (tighten for 2 seconds, relax for 4, repeat 10 times), then a series of long clenches (tighten for at least 5 seconds, then relax for 10, then repeat 10 times). Eventually, I am to work my way up to clenching for 10 seconds.
And how do I know which muscles to clench? She explained that the pelvic floor muscles are are not my stomach, or abdomen, or buttocks, but are instead the muscles that are used to tighten my anus. I had the lovely experience of this PT inserting her finger in my anus and measuring how much and how long I could tighten myself around it. She told me to clench, then relax, and then told me that I was using too many muscles. She kept at it until I was using only the pelvic floor muscles. It took a while to figure that out. To paraphrase LeBron, not 2, not 3, not 4, not 5, not 6 . . .
To give me incentive to do it right, the PT threatened me with biofeedback, in which she would insert some kind of evil-looking probe that would measure my clenching power and let me know how I was doing. Uh, no, I'm good, I get the idea, I'm ready to go home now. I never thought that training this neobladder would literally be a pain in the -- well, you know.
I also am supposed to keep track of when void, and each incident of leakage. She also suggested that I keep track of how much urine I am outputting each time, so I figure out if my capacity is increasing. She gave me a handy little chart to keep track. I feel like I'm three years old and am back in potty training. I hope she gives me gold star for the next visit. If all of this helps me become continent at night, and lets me get more sleep, then it will be worth it.
As for the tricks of draining a neobladder, the PT said that techniques include squeezing the stomach and abdominal muscles, holding my breath and lightly bearing down, relaxing all muscles and letting gravity do its thing, sitting and raising the feet to further relax the muscles, and externally pushing on where the neobladder is located. I'd already tried most of these, and found that not all work for me. I have found that I need to sit while voiding, since whatever muscles I'm using are no replacement for the detrusor muscle in the bladder, and the days of a strong flow are gone. That apparently is typical of neobladder patients.
As for mastering continence, she said that would be improved by strengthening the pelvic floor muscles. Apparently, I need to work on both the ability to stop my flow in mid-stream, and generally strengthening the duration of my ability to squeeze those muscles. The exercise is the male equivalent of the kegel exercise - clenching, then releasing, the pelvic floor muscles. I am to do exercised about 5 times a day consisting of a series of 10 quick clench and release (tighten for 2 seconds, relax for 4, repeat 10 times), then a series of long clenches (tighten for at least 5 seconds, then relax for 10, then repeat 10 times). Eventually, I am to work my way up to clenching for 10 seconds.
And how do I know which muscles to clench? She explained that the pelvic floor muscles are are not my stomach, or abdomen, or buttocks, but are instead the muscles that are used to tighten my anus. I had the lovely experience of this PT inserting her finger in my anus and measuring how much and how long I could tighten myself around it. She told me to clench, then relax, and then told me that I was using too many muscles. She kept at it until I was using only the pelvic floor muscles. It took a while to figure that out. To paraphrase LeBron, not 2, not 3, not 4, not 5, not 6 . . .
To give me incentive to do it right, the PT threatened me with biofeedback, in which she would insert some kind of evil-looking probe that would measure my clenching power and let me know how I was doing. Uh, no, I'm good, I get the idea, I'm ready to go home now. I never thought that training this neobladder would literally be a pain in the -- well, you know.
I also am supposed to keep track of when void, and each incident of leakage. She also suggested that I keep track of how much urine I am outputting each time, so I figure out if my capacity is increasing. She gave me a handy little chart to keep track. I feel like I'm three years old and am back in potty training. I hope she gives me gold star for the next visit. If all of this helps me become continent at night, and lets me get more sleep, then it will be worth it.
Monday, June 4, 2012
Mets Day 53 - incremental progress
The six days since my SP tube was removed have been marked by a steady decrease in the level of pain, and a steady increase in my ability to move. While sitting with good posture while wearing a belt (which sits right over the SPT site) is is still difficult for more than than a few minutes (as I found at church yesterday), for the past few days I have been able to go without any painkillers.
The biggest issue to my ongoing recovery continues to be the lack of a good night's sleep, due the the need to get up every two hours or so and void the neobladder. Each night I set my iPhone alarm, and find that I need it for the first time, but thereafter I don't. This tells me that I don't succeed in going back to deep sleep after the first time I wake up. As a result, during the day my mind feels wooly and dull. Physically, I lack energy. I usually take naps during the day. It is a sedentary life, and I don't like it.
I have read, and have been told, that most neobladder patients see steady improvement in their nighttime continence, and can get more sleep, but it can take several months. I'm going to my first meeting with the neobladder physical therapist on Thursday, so I expect to have more information then. Until I consistently get a decent night's sleep, I don't think I'm in a position to return to work. (I am thinking about going into to office tomorrow, however, just to catch up with everyone. It will depend on how I feel tomorrow morning.)
Meanwhile, we continue to evaluate clinical trial options. We learned this morning that the Michigan trial involving Sunitinib had been recently closed, so that no longer is an option. After driving to Norfolk last week to learn more about the Dendreon trial, Jennifer and I decided that we didn't want to be making that drive twice a week for a prolonged period of time. We continue to evaluate other locations for the Dendreon trial, including Fox Chase in Philadelphia, and are awaiting word on whether and when Hopkins will open its own Dendreon trial.
I should note that none of these clinical trials are focused on cures. There is no known cure for metastatic bladder cancer, and whether or not there are distant metasteses found, the trials are only intended to try to extend life, not eradicate the disease. The trials are by definition experimental in nature, and all involve unproven approaches. I think it is important to have the mindset that no trial will cure me. Among the criteria by which I am evaluating a potential trial are the likelihood of a benefit, and the severity of the potential side effects. I am not eager to degrade my quality of life by going through an unproven and experimental treatment. he Dendreon trial has minimal side effects, and some upside, so that appears to be the path we'll take, once we can find a better location.
For now, the plan for the next month or so is to master nighttime continence, consistently get a good night's sleep, and see what happens with the Dendreon clinical trial.
The biggest issue to my ongoing recovery continues to be the lack of a good night's sleep, due the the need to get up every two hours or so and void the neobladder. Each night I set my iPhone alarm, and find that I need it for the first time, but thereafter I don't. This tells me that I don't succeed in going back to deep sleep after the first time I wake up. As a result, during the day my mind feels wooly and dull. Physically, I lack energy. I usually take naps during the day. It is a sedentary life, and I don't like it.
I have read, and have been told, that most neobladder patients see steady improvement in their nighttime continence, and can get more sleep, but it can take several months. I'm going to my first meeting with the neobladder physical therapist on Thursday, so I expect to have more information then. Until I consistently get a decent night's sleep, I don't think I'm in a position to return to work. (I am thinking about going into to office tomorrow, however, just to catch up with everyone. It will depend on how I feel tomorrow morning.)
Meanwhile, we continue to evaluate clinical trial options. We learned this morning that the Michigan trial involving Sunitinib had been recently closed, so that no longer is an option. After driving to Norfolk last week to learn more about the Dendreon trial, Jennifer and I decided that we didn't want to be making that drive twice a week for a prolonged period of time. We continue to evaluate other locations for the Dendreon trial, including Fox Chase in Philadelphia, and are awaiting word on whether and when Hopkins will open its own Dendreon trial.
I should note that none of these clinical trials are focused on cures. There is no known cure for metastatic bladder cancer, and whether or not there are distant metasteses found, the trials are only intended to try to extend life, not eradicate the disease. The trials are by definition experimental in nature, and all involve unproven approaches. I think it is important to have the mindset that no trial will cure me. Among the criteria by which I am evaluating a potential trial are the likelihood of a benefit, and the severity of the potential side effects. I am not eager to degrade my quality of life by going through an unproven and experimental treatment. he Dendreon trial has minimal side effects, and some upside, so that appears to be the path we'll take, once we can find a better location.
For now, the plan for the next month or so is to master nighttime continence, consistently get a good night's sleep, and see what happens with the Dendreon clinical trial.
Friday, June 1, 2012
Mets Day 50 - 1 Month Post-Surgery Status Report
One month after my bladder, prostate, and 61 lymph nodes were removed, and a neobladder created, here is a status report on how I am doing in my physical recovery. I will use this report as a benchmark of sorts to gauge my progression. It may also be useful to other readers who are facing or may have the same surgery.
1. The primary incision is almost completely closed. There is a half-inch opening at the bottom of the incision that has not has skin form over it yet; it is still granulating and forming a scab. There is almost no pain associated with the primary incision.
2. The site of my JP drain is completely closed and healed.
3. My SP tube site (removed 3 days ago) is still closing. It is improving each day; the amount of yellowish discharge is decreasing. There is still pain associated with it, but far less than when the SPT was in. Jennifer dresses the site with hydrogen peroxide, cleans it with saline, then we put a 4x4 gauze over it, or a large band-aid.
4. My abdominal strength is still weak, but is slowly improving. I can get up from chairs or exit from cars without assistance and usually without pain. I must use my elbows to roll out of bed. Rolling over in bed is probably the most problematic due to the SP tube site trying to close.
5. Voiding the neobladder can be done only while seated. Not having had any guidance from a physical therapist, I am trying to squeeze a number of different muscle combinations. Usually, urine flow is weak to moderate, and lasts only a few seconds. Complete voiding takes several minutes of trying different muscle combinations. Putting external pressure on the areas of the neobladder occasionally helps. There usually is mucus from the neobladder each time I void. I have had no problems with blockage and have not had to self-catheterize.
6. Continence during the day is pretty good, as long as I void every two hours or so. If I do not, then I may have a brief squirt of incontinence if I cough or move suddenly. Today, for example, I am trying to go through the day for the first time without a Depends or a urine pad. So far, so good.
7. Nighttime continence is more difficult. I need to get up every 90 minutes or so (as short as every hour, usually no longer than every two hours) to void, or else I will leak into the Depends and/or urine pad. I tried setting the alarm to wake me up, but found that I would wake up without it when I was on the edge of incontinence. This means that I usually have not been in deep REM sleep, and not getting the physical rest to which I have been accustomed prior to surgery. When I get up for the day each morning, I feel grey and foggy. I find it more difficult to concentrate, and reading long and complex books or documents is far more difficult than before. This lack of good sleep, more than anything else, has impaired my mind and inhibited my desire and ability to return to work. I am told that, eventually, the frequency of getting up each night will decrease to perhaps once or twice a night.
8. The overall level of pain that I feel each day is relatively low, although at times I still feel a moderate burning pain across my right side, from just past the SPT incision site to the right hip -- the same area where I felt the intense pain in the hospital. I find that, on those times that I feel that burning pain, wearing a Thermacare heat wrap over the area substantially diminishes the pain. So far, there is no pain associated with the cancer.
9. My voice has changed due to apparent scarring of my vocal cords during the intubation during surgery. It sounds more hoarse than before surgery. I also am unable to project as much power through my vocal cords as before. I don't know if that is permanent.
10. Coughing, sneezing, and laughing are slowly getting less painful, as my abdomen heals. I can now generate a deeper cough than I could a week or so ago, although it comes with a twinge of pain.
11. While not directly related to the surgery, my hair is different due to the chemotherapy. It is thinner and has a bit of a curl to it - as opposed to my straight hair of before. It also grows far slower than before.
12. I have lost about 20 pounds since May 1. My appetite ebbs and flows - sometimes I'm ravenous, but usually I'm either less hungry, or not hungry at all. I typically have a protein shake for breakfast. I also make sure to drink lots of fluids during that day - usually Propel Zero or ice water. Shockingly, I have little desire for Diet Coke (with or without lime). This news may cause Coke to lose substantial market value. Whether I eat lunch is entirely dependent upon how a feel. It may be nothing, or it may be some fruit, or it my be more substantial. Dinner is also dependent upon how I feel, although when I do eat, the portions are smaller than before. I also find myself snacking less than before. I can walk by a box of Girl Scout thin mints, or Entermanns, or cake, and feel zero desire -- far different than before. All this is probably a good thing in the big picture, since I could stand to lose even more weight. But I do not recommend this diet to anyone.
13, Impotence is an unknown, as sexual activity has taken a back seat to physical healing. I have noted that the days of morning wood appear to be over.
1. The primary incision is almost completely closed. There is a half-inch opening at the bottom of the incision that has not has skin form over it yet; it is still granulating and forming a scab. There is almost no pain associated with the primary incision.
2. The site of my JP drain is completely closed and healed.
3. My SP tube site (removed 3 days ago) is still closing. It is improving each day; the amount of yellowish discharge is decreasing. There is still pain associated with it, but far less than when the SPT was in. Jennifer dresses the site with hydrogen peroxide, cleans it with saline, then we put a 4x4 gauze over it, or a large band-aid.
4. My abdominal strength is still weak, but is slowly improving. I can get up from chairs or exit from cars without assistance and usually without pain. I must use my elbows to roll out of bed. Rolling over in bed is probably the most problematic due to the SP tube site trying to close.
5. Voiding the neobladder can be done only while seated. Not having had any guidance from a physical therapist, I am trying to squeeze a number of different muscle combinations. Usually, urine flow is weak to moderate, and lasts only a few seconds. Complete voiding takes several minutes of trying different muscle combinations. Putting external pressure on the areas of the neobladder occasionally helps. There usually is mucus from the neobladder each time I void. I have had no problems with blockage and have not had to self-catheterize.
6. Continence during the day is pretty good, as long as I void every two hours or so. If I do not, then I may have a brief squirt of incontinence if I cough or move suddenly. Today, for example, I am trying to go through the day for the first time without a Depends or a urine pad. So far, so good.
7. Nighttime continence is more difficult. I need to get up every 90 minutes or so (as short as every hour, usually no longer than every two hours) to void, or else I will leak into the Depends and/or urine pad. I tried setting the alarm to wake me up, but found that I would wake up without it when I was on the edge of incontinence. This means that I usually have not been in deep REM sleep, and not getting the physical rest to which I have been accustomed prior to surgery. When I get up for the day each morning, I feel grey and foggy. I find it more difficult to concentrate, and reading long and complex books or documents is far more difficult than before. This lack of good sleep, more than anything else, has impaired my mind and inhibited my desire and ability to return to work. I am told that, eventually, the frequency of getting up each night will decrease to perhaps once or twice a night.
8. The overall level of pain that I feel each day is relatively low, although at times I still feel a moderate burning pain across my right side, from just past the SPT incision site to the right hip -- the same area where I felt the intense pain in the hospital. I find that, on those times that I feel that burning pain, wearing a Thermacare heat wrap over the area substantially diminishes the pain. So far, there is no pain associated with the cancer.
9. My voice has changed due to apparent scarring of my vocal cords during the intubation during surgery. It sounds more hoarse than before surgery. I also am unable to project as much power through my vocal cords as before. I don't know if that is permanent.
10. Coughing, sneezing, and laughing are slowly getting less painful, as my abdomen heals. I can now generate a deeper cough than I could a week or so ago, although it comes with a twinge of pain.
11. While not directly related to the surgery, my hair is different due to the chemotherapy. It is thinner and has a bit of a curl to it - as opposed to my straight hair of before. It also grows far slower than before.
12. I have lost about 20 pounds since May 1. My appetite ebbs and flows - sometimes I'm ravenous, but usually I'm either less hungry, or not hungry at all. I typically have a protein shake for breakfast. I also make sure to drink lots of fluids during that day - usually Propel Zero or ice water. Shockingly, I have little desire for Diet Coke (with or without lime). This news may cause Coke to lose substantial market value. Whether I eat lunch is entirely dependent upon how a feel. It may be nothing, or it may be some fruit, or it my be more substantial. Dinner is also dependent upon how I feel, although when I do eat, the portions are smaller than before. I also find myself snacking less than before. I can walk by a box of Girl Scout thin mints, or Entermanns, or cake, and feel zero desire -- far different than before. All this is probably a good thing in the big picture, since I could stand to lose even more weight. But I do not recommend this diet to anyone.
13, Impotence is an unknown, as sexual activity has taken a back seat to physical healing. I have noted that the days of morning wood appear to be over.
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