Court was cancelled on Monday while the storm blew through. Yesterday
morning everything was back to normal. The Norfolk area appeared to be spared major
damage, but I have not gone out to look around, instead just walking to court and back each day. The parties finished putting in evidence today. Closing arguments will be tomorrow, followed by deliberations. Hopefully, the jury will decide quickly. I'm tired of everything associated with this trial, and ready to go home.
The power went out at home on Sunday afternoon, and everyone was expecting it to be out for days. Much to their and my surprise, power was restored by mid-day Monday. I guess the derecho in June knocked down most of the limbs and weaker trees. Jennifer said we lost only one other of the big oaks on our property, fortunately, far away from the house. [Edit: over the weekend I walked our property and found that 8 big oaks had been knocked down.] She also said that the basement sprang a leak underneath the outside portion of the main floor outside deck, but it could be worse -- we could be in New York or along the Jersey shore and have been flooded out. I'll deal with that later.
Spencer found a combination of mobile mechanics who came out to the house to work on the Explorer; once came out and removed the front axle differential, then discovered that the one Spencer and Jennifer got from the junkyard was the wrong type. It took them three trips to the junkyard to finally get the right one. By that time, the original mechanic had gone to Georgia, and two others flaked out. He finally found a fourth one to come out and install the replacement differential. The Explorer is once again road worthy, for now anyway. Spencer is happy to be mobile again, and I am happy that I don't have to figure out how to finish that job. Now we just need to figure out what to do with the wrecked Neon sitting in the garage, but there's no urgency with that.
Kirsten is working on her college applications. She's applying to about 10 different schools in Virginia, California, and Utah. It will be interesting to see to where she is accepted, and her ultimate decision of where to go. In my view, the least important criteria for choosing a school is the actual course offerings, since virtually all colleges have similar course content. The thing that matters most to me is the size of the campus (and the classes), the motivations of the students, and how well she will fit into the campus. There is a good chance that she will meet the person that she eventually marries in college, so her college choice can have a much broader effect than merely obtaining a degree. I don't know how she (or anyone) can make a fully-informed decision about the "right" college to attend. But she's been going about it the right way, and I'm proud that she is doing all of the work herself, and owning the decision.
Wednesday, October 31, 2012
Sunday, October 28, 2012
Mets Day 199 - riders on the storm
All weekend we've been watching as Hurricane Sandy approaches, and is forecast to merge with a low pressure system that my brother tells me dumped up to three feet of snow at the Utah ski resorts. Currently wind is gusting at over 50 mph outside my hotel in Norfolk. This morning Jennifer and I were watching the local news and were surprised to see flooding with our hotel in the background. We looked out the window and saw the flooding about a block away. I told Jennifer that it was time for her to head home, and fortunately she got home safely.
This evening the judge's courtroom deputy called me to say that our trial has been cancelled for tomorrow, at least. Our team is hunkered down at our hotel, which we are told has emergency generators in case power is lost. I spoke with the family at home, and they say everything is battened down. Fairfax County already has announced that school is cancelled for Monday and Tuesday. Here's the email I sent to them last night:
This evening the judge's courtroom deputy called me to say that our trial has been cancelled for tomorrow, at least. Our team is hunkered down at our hotel, which we are told has emergency generators in case power is lost. I spoke with the family at home, and they say everything is battened down. Fairfax County already has announced that school is cancelled for Monday and Tuesday. Here's the email I sent to them last night:
"You may have heard that a hurricane is coming towards us in
the next few days, and it will merge with a cold front and bring heavy rains
and winds to the area on Monday, Tuesday, and Wednesday, With all of the
leaves on the trees, we are likely to have a lot of limbs and trees down
throughout the area, and will lose power for several days, maybe a week or
more. School likely will be cancelled for several days, too. Here are
some things to make sure you are properly prepared. Please do them this
weekend, and no later than Sunday night:
1. Make
sure the Jeep and Explorer are full of gas.
2. Make
sure the gas cans are full, too.
3. Fill
the large round orange drink cooler with water and put it on the kitchen
counter
4. Fill
the bathtubs with water, so you can scoop water from there with a bucket and
dump it in the toilet. Get the buckets from the garage.
5. Make
sure we have enough batteries. If not, buy some. Make sure the
flashlights work.
6. Charge
your cell phones. Have your car chargers handy. Once the power is
down, the cell networks will be affected. Texts are easier to get through
than phone calls. You can charge your computers, too, but the internet
will be down.
7. Move
the pool furniture into the gazebo
8. Bring
up the black grill and put it under the deck screen porch; we may use it to
cook. Put all other deck furniture under the screen porch, too.
9. Start
eating leftovers and other perishable items in the fridge and freezer.
Once the power is out, limit the time you open the fridge and freezer.
Food will start to spoil within 48 hours.
1. Go
to the ATM and have some cash available.
1. Have
the Glock and .22 rifle ready to defend against looters and zombies. I
expect some really scary people walking around Wednesday night, banging on
doors and demanding food."
Saturday, October 27, 2012
Mets Day 198 - Happy 29th Anniversary
This weekend Jennifer and I are celebrating our 29th wedding anniversary. She drove down to Norfolk to join me for the weekend, since the trial is dragging into a third week. We are looking forward to spending some item together, even though it will be a working weekend for me.
I have had no real progress on the incontinence or sleep deprivation front. My clinician has referred me to a psychiatrist specializing in sleep disorders to help me find a balance of medications that will help me get some longer sleep. That, and following up with the urologists regarding the incontinence, is job one after this trial ends. I feel like I am going to need to take some time off to recharge and focus on my health.
This trial has reinforced my perception that I am several steps too slow. I do not feel as alert or tuned in as I would like, and have to struggle to stay focused. Afternoons and evenings are especially difficult. I am glad that we have such a great team down here, and that I am essentially a cheerleader.
Occasionally I have moments of melancholy that this may be my last trial, but then I realize that I've spent 25 years practicing law. My legal practice has been a means to an end, and the end has been to support my family. I do not want the means to be my end. I am reconciled to the idea of accepting disability. The primary uncertainty is what the insurance company will say, and what will be the terms. I have a feeling that they will not want to easily part with their cash. But I'll worry about that later. Now it's time to enjoy some time with my patient wife.
I have had no real progress on the incontinence or sleep deprivation front. My clinician has referred me to a psychiatrist specializing in sleep disorders to help me find a balance of medications that will help me get some longer sleep. That, and following up with the urologists regarding the incontinence, is job one after this trial ends. I feel like I am going to need to take some time off to recharge and focus on my health.
This trial has reinforced my perception that I am several steps too slow. I do not feel as alert or tuned in as I would like, and have to struggle to stay focused. Afternoons and evenings are especially difficult. I am glad that we have such a great team down here, and that I am essentially a cheerleader.
Occasionally I have moments of melancholy that this may be my last trial, but then I realize that I've spent 25 years practicing law. My legal practice has been a means to an end, and the end has been to support my family. I do not want the means to be my end. I am reconciled to the idea of accepting disability. The primary uncertainty is what the insurance company will say, and what will be the terms. I have a feeling that they will not want to easily part with their cash. But I'll worry about that later. Now it's time to enjoy some time with my patient wife.
Friday, October 19, 2012
Mets Day 190 - Ambien adjustments
For the past week I've been away from home, providing support to a team of attorneys from my firm in a large patent case. I've had some long days, and am rarely getting more than four hours of sleep. I've tried various doses of Ambien to help me get more sleep. For several days, I'd take 5 mg immediately before bed. Inevitably, I'd wake up when I start to leak, and then would toss and turn and never get back to sleep. I tried taking 10 mg immediately before bed, only to wake up between 3 and 4 am again. I found it easier to go back to sleep, but when I work up, I felt less energetic than if I just had 4 hours of sleep. I assume I was not getting as much REM sleep than with a lower dose of Ambien. At other times, I've experimented with taking 5 mg immediately before bed, then another 5 mg after I woke up at 3 or 4 am. I found I could go back to sleep for a few more hours, but I felt like I was dragging around all morning. And I've also experimented with not taking any all. None is really a satisfactory result. The experiment continues.
Saturday, October 13, 2012
Mets Day 184 - trying times
I'm in Norfolk, helping other attorneys from my firm get ready for a big trial. Since I have pulled back from doing any witnesses or otherwise having a speaking role, my self-described job is to be a a splatter screen, to protect the rest of the team from all of the crap that the other side will be throwing at us. Several people have asked why I am doing this. The main reason is out of duty and obligation to my client and co-workers. I want to see this through. The fact that my partner personally asked me to be here and assist him played a strong role. And the fact that my scans were negative clinched the decision.
That's not to say that I was tempted to stay home. Last Thursday night, Spencer and I spent about 6 hours under our old Ford Explorer, trying to change out the front differential axle. We discovered it had a large hole in the bottom of it, probably caused by a rock, and all the fluid had leaked out. I'm no mechanic, but even I could see that was not a good thing. The seals were also blown; I discovered that after I fabricated a temporary aluminum patch, bolted it into place, and refilled the differential with 75W90. We were trying to fix the axle so Spencer could drive the Explorer, since he wrecked his Neon the week before (turning left on a yellow light; the guy coming the opposite way sped up to make the light instead of stopping). At around midnight, we found that the axle gearing was so badly damaged that we could not separate it from the CV joints. We also figured out that the replacement axle that Spencer got was not compatible, so we packed it in for the night. I was so exhausted that, when Jennifer and I were saying our nighttime prayers, I could not even form the words to finish a sentence. Yesterday morning, I was very tempted to not come down to the trial, but duty and obligation won out.
Trial starts on Tuesday. It probably will last 2 weeks. These will be trying times. I actually enjoy the adrenaline and crucible of jury trials, but then again, I was dropped on my head several times as a child. Aside from the excellent people with who I get to work, trials are the part of my legal practice that I think will miss the most.
That's not to say that I was tempted to stay home. Last Thursday night, Spencer and I spent about 6 hours under our old Ford Explorer, trying to change out the front differential axle. We discovered it had a large hole in the bottom of it, probably caused by a rock, and all the fluid had leaked out. I'm no mechanic, but even I could see that was not a good thing. The seals were also blown; I discovered that after I fabricated a temporary aluminum patch, bolted it into place, and refilled the differential with 75W90. We were trying to fix the axle so Spencer could drive the Explorer, since he wrecked his Neon the week before (turning left on a yellow light; the guy coming the opposite way sped up to make the light instead of stopping). At around midnight, we found that the axle gearing was so badly damaged that we could not separate it from the CV joints. We also figured out that the replacement axle that Spencer got was not compatible, so we packed it in for the night. I was so exhausted that, when Jennifer and I were saying our nighttime prayers, I could not even form the words to finish a sentence. Yesterday morning, I was very tempted to not come down to the trial, but duty and obligation won out.
Trial starts on Tuesday. It probably will last 2 weeks. These will be trying times. I actually enjoy the adrenaline and crucible of jury trials, but then again, I was dropped on my head several times as a child. Aside from the excellent people with who I get to work, trials are the part of my legal practice that I think will miss the most.
Monday, October 8, 2012
Mets Day 179 - Of Regrets and Resolutions
I spent this past weekend at our lake house with Jennifer and our good friends Bill, Bernice and Cynthia. Walter could not make it due to work commitments. It is a good thing to spend prolonged time with close friends. We talked, laughed, comforted each other, ate good food, played games, went boating, and applied balm to our souls. Good friends are precious to have, and I am grateful for them.
Last night, after they left for home, Jennifer and I started listening to some of the talks from our church's semi-annual general conference. Twice a year, regular Sunday church meetings are cancelled, and church members are instead asked to listen to or read ten hours of talks broadcast and streamed from the church headquarters in Salt Lake City. (A link to the main page for these talks is here.) One announcement that caught my attention was that the church has dropped the age for missionaries to serve from 19 to 18 for young men, and from 21 to 19 for young women. An LDS mission is voluntary and self-financed; each young man or woman is encouraged to prepare and save. The window for service is now between ages 18 (or 19 for women) to about age 26. If they are deemed ready and worth by local church leaders, then they may be sent anywhere in the world for 18 months to two years. That means that Kirsten could leave on a mission in as soon as a year and a half, should she choose to go, and Garrett, should he so choose, could be leaving on a mission in less than four years. Time does fly by.
One of the talks that penetrated my soul was an address titled "Of Regrets and Resolutions," by Dieter F. Uchtdorf. (I don't think the speech has been transcribed yet, but video or audio of it is available here.) Elder Uchtdorf was raised in East Germany, eventually moved to West Germany with his family, joined the church, and was a commercial airline pilot before being called as an apostle about 10 years ago. He spoke of how precious years on earth, in the eternal perspective barely amount to the blink of an eye. He built his sermon around the regrets commonly expressed by the terminally ill: I wish I had spent more time with the people I love. I wish I had lived up to my potential. I wish I had let myself be happier.
On spending more time with the people I love, Elder Uchtdorf said that men in particular regretted having spent so much time on work that they lost out on choice memories that come from spending time with family and friends. As my faithful blog readers well know, I have recently been contemplating my work/life balance, which has been magnified by both the fact that I have Stage IV cancer, and that I continue to suffer from sleep deprivation due to my malfunctioning neobladder. Last week I spoke with one of my partners, who strongly encouraged me to apply for and take the disability, and spend time with family and friends. Other partners have likewise encouraged me to do so. On Friday, I signed the forms and sent them in. I have not yet figured out what I will be doing, but I intend to spend much more time with family and friends. Hearing Elder Uchtdorf speak about the importance of doing that confirmed the correctness of my decision.
On living up to my potential, Elder Uchtdorf said that when terminally ill patients looked back on their lives, they realized that they never lived up to their potential, that "too many songs remained unsung." He added:
"I am not speaking here of climbing the ladder of success in our various professions. That ladder, no matter how lofty it may appear on this earth, barely amounts to a single step in the great eternal journey awaiting us. Rather, I am speaking of becoming the person God, our Heavenly Father, intended us to be.... Our Heavenly Father sees our real potential. He knows things about us that we do not know ourselves. He prompts us during our lifetime to fulfill the measure of our creation, to live a good life and to return to His presence. Why then, do we devote so much of our time and energy to things that are so fleeting, so inconsequential and so superficial? Do we refuse to see the folly in the pursuit of the trivial and transient?"
My faith has helped me keep a balance between the trivial and the profound. I know that, in the long run, my work pales in comparison to my relationships with family and friends. I believe that my soul is eternal, and the essence of what I am will not be extinguished when my body finally gives out. I find great comfort in that belief. My challenge, as underscored by Elder Uchtdorf, is keeping that perspective and balance each day. After singing the law for more than 24 years, I am now trying to decide what other songs I want to sing.
Elder Uchtdorf's last point, about being happy, was consistent with my attitude. He emphasized joy in the journey, relating how sometimes he and his wife would go for a bike ride, and the competitive side of him would make him want to go faster, be better than the last time they rode a route. His wife would encourage him to not focus on the finish line, but to enjoy the ride. He said that we don't listen to music to wait for the end of the song, but to enjoy the melody, harmony, and variations as they occur. Life, he said, is better lived if we view it like a song. "No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy if only we will see and appreciate it. Perhaps we should be looking less with our eyes and more with our hearts."
Every now and then a conference talk seems to be directed specifically to me. Elder Uchtdorf's talk was one of those instances. I suspect I will be going back to those words with some frequency and I recalibrate my life and focus it on being and becoming a better man.
Last night, after they left for home, Jennifer and I started listening to some of the talks from our church's semi-annual general conference. Twice a year, regular Sunday church meetings are cancelled, and church members are instead asked to listen to or read ten hours of talks broadcast and streamed from the church headquarters in Salt Lake City. (A link to the main page for these talks is here.) One announcement that caught my attention was that the church has dropped the age for missionaries to serve from 19 to 18 for young men, and from 21 to 19 for young women. An LDS mission is voluntary and self-financed; each young man or woman is encouraged to prepare and save. The window for service is now between ages 18 (or 19 for women) to about age 26. If they are deemed ready and worth by local church leaders, then they may be sent anywhere in the world for 18 months to two years. That means that Kirsten could leave on a mission in as soon as a year and a half, should she choose to go, and Garrett, should he so choose, could be leaving on a mission in less than four years. Time does fly by.
One of the talks that penetrated my soul was an address titled "Of Regrets and Resolutions," by Dieter F. Uchtdorf. (I don't think the speech has been transcribed yet, but video or audio of it is available here.) Elder Uchtdorf was raised in East Germany, eventually moved to West Germany with his family, joined the church, and was a commercial airline pilot before being called as an apostle about 10 years ago. He spoke of how precious years on earth, in the eternal perspective barely amount to the blink of an eye. He built his sermon around the regrets commonly expressed by the terminally ill: I wish I had spent more time with the people I love. I wish I had lived up to my potential. I wish I had let myself be happier.
On spending more time with the people I love, Elder Uchtdorf said that men in particular regretted having spent so much time on work that they lost out on choice memories that come from spending time with family and friends. As my faithful blog readers well know, I have recently been contemplating my work/life balance, which has been magnified by both the fact that I have Stage IV cancer, and that I continue to suffer from sleep deprivation due to my malfunctioning neobladder. Last week I spoke with one of my partners, who strongly encouraged me to apply for and take the disability, and spend time with family and friends. Other partners have likewise encouraged me to do so. On Friday, I signed the forms and sent them in. I have not yet figured out what I will be doing, but I intend to spend much more time with family and friends. Hearing Elder Uchtdorf speak about the importance of doing that confirmed the correctness of my decision.
On living up to my potential, Elder Uchtdorf said that when terminally ill patients looked back on their lives, they realized that they never lived up to their potential, that "too many songs remained unsung." He added:
"I am not speaking here of climbing the ladder of success in our various professions. That ladder, no matter how lofty it may appear on this earth, barely amounts to a single step in the great eternal journey awaiting us. Rather, I am speaking of becoming the person God, our Heavenly Father, intended us to be.... Our Heavenly Father sees our real potential. He knows things about us that we do not know ourselves. He prompts us during our lifetime to fulfill the measure of our creation, to live a good life and to return to His presence. Why then, do we devote so much of our time and energy to things that are so fleeting, so inconsequential and so superficial? Do we refuse to see the folly in the pursuit of the trivial and transient?"
My faith has helped me keep a balance between the trivial and the profound. I know that, in the long run, my work pales in comparison to my relationships with family and friends. I believe that my soul is eternal, and the essence of what I am will not be extinguished when my body finally gives out. I find great comfort in that belief. My challenge, as underscored by Elder Uchtdorf, is keeping that perspective and balance each day. After singing the law for more than 24 years, I am now trying to decide what other songs I want to sing.
Elder Uchtdorf's last point, about being happy, was consistent with my attitude. He emphasized joy in the journey, relating how sometimes he and his wife would go for a bike ride, and the competitive side of him would make him want to go faster, be better than the last time they rode a route. His wife would encourage him to not focus on the finish line, but to enjoy the ride. He said that we don't listen to music to wait for the end of the song, but to enjoy the melody, harmony, and variations as they occur. Life, he said, is better lived if we view it like a song. "No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy if only we will see and appreciate it. Perhaps we should be looking less with our eyes and more with our hearts."
Every now and then a conference talk seems to be directed specifically to me. Elder Uchtdorf's talk was one of those instances. I suspect I will be going back to those words with some frequency and I recalibrate my life and focus it on being and becoming a better man.
Thursday, October 4, 2012
Mets Day 175 - I dreamed a dream
Last night I had something most usual happen -- I had not one, but two dreams. Having a single dream has been a rare thing post-surgery, unlike before, when I usually would have multiple vivid dreams each night. I also used to be able to manipulate my dreams, sort of like a meta-dream (or Inception): If I didn't like where a dream was going, I could consciously move it into another direction. I have not had such dreams since my surgery, however. Last night was the first time since May 2 that I recall having two dreams in one night. The dreams seemed to come at the end of the night, after I'd gotten up a couple of times, meaning I managed to get back into REM sleep, which is something else I've missed.
For you armchair Freudians out there, what do you make of these:
Dream 1: I was walking up a gravel road when I saw a huge African lion at the top of the road. I ran into an old seemingly abandoned house to the left of the road to hide from the lion, and called 911 on my cell phone. While I was on the phone, looking out a rusted old screen door for the lion and thinking this was not much of a barrier, a woman walked by the house, followed by two camels and an ostrich. She brightly called out that I should not worry about the lion because she was going to take it back to the zoo. I watched as the woman, camels and ostrich flounced away towards the lion and out of my line of sight. I distinctly remember the bouncing of the feathers on the back of the ostrich back and thinking that it had an awkward gait. The dream ended when I heard a tremendous roar and a shriek.
Dream 2: Waterworld meets Costa Concordia. I was on a wrecked cruise ship in a post-apocalyptic world. I was aware that civilization has we knew it had ended. People were scrabbling around the filthy ship searching for food and trying to get by. There were no children; apparently the adults were sterile. I was a newly arrived stranger; I had no family and knew no one. I was offered the chance to impregnate a woman but declined because I had a vasectomy, plus I knew that I was still impotent from my surgery. As I was walking away, the whole ship shifted, and I had to climb a staircase sideways. The dream ended as I was wondering if I could get out before the ship sank.
Weird.
So did I feel more well-rested? I'm not sure. I thought about it when I woke up, and couldn't decide. I used to be more indecisive, but now I'm not so sure.
For you armchair Freudians out there, what do you make of these:
Dream 1: I was walking up a gravel road when I saw a huge African lion at the top of the road. I ran into an old seemingly abandoned house to the left of the road to hide from the lion, and called 911 on my cell phone. While I was on the phone, looking out a rusted old screen door for the lion and thinking this was not much of a barrier, a woman walked by the house, followed by two camels and an ostrich. She brightly called out that I should not worry about the lion because she was going to take it back to the zoo. I watched as the woman, camels and ostrich flounced away towards the lion and out of my line of sight. I distinctly remember the bouncing of the feathers on the back of the ostrich back and thinking that it had an awkward gait. The dream ended when I heard a tremendous roar and a shriek.
Dream 2: Waterworld meets Costa Concordia. I was on a wrecked cruise ship in a post-apocalyptic world. I was aware that civilization has we knew it had ended. People were scrabbling around the filthy ship searching for food and trying to get by. There were no children; apparently the adults were sterile. I was a newly arrived stranger; I had no family and knew no one. I was offered the chance to impregnate a woman but declined because I had a vasectomy, plus I knew that I was still impotent from my surgery. As I was walking away, the whole ship shifted, and I had to climb a staircase sideways. The dream ended as I was wondering if I could get out before the ship sank.
Weird.
So did I feel more well-rested? I'm not sure. I thought about it when I woke up, and couldn't decide. I used to be more indecisive, but now I'm not so sure.
Tuesday, October 2, 2012
Mets Day 173 - Another scan at Fox Chase
Today Jennifer and I drove up to Philadelphia for another day of scans at Fox Chase Cancer Center. This is a continuation of the Dendreon clinical trial, where I was randomized into the control group. I don't get the experimental drug, but by staying in the trial I can still assist by helping to establish a baseline. Plus, the scans are more frequent than insurance would typically approve, I get real-time results, and I get to continue consulting with another great group of doctors. And I get to enjoy a nice car ride with my beautiful wife.
So after the nurse accessed my port, she drew 14 (!) vials of blood -- so much that the needle clotted up on the 11th vial, and she had to put in a second access line. She left in the access line so it could be used for the iodine injection for the CT scan. That's always an interesting feeling as the iodine is injected into your system -- you feel this warm feeling starting in your chest, then quickly spreading throughout your system in about 10 seconds, ending with the most intense heat in the bowels. I guess that tells me where I have the most blood. After I emerged from the spinning magnetic donut, I was released from my pre-scan fast, so Jennifer and I ate in the hospital cafeteria that one of the nurses said was the best of the three on site. Nothing special -- the other two must be pretty bad, I thought.
While we waited for the scan to be read by the radiologist and the report prepared, we chatted with Michael, one of the novices from the Chicago friary that hosted us in May. After three years in the seminary, this summer he decided to shift gears and returned back to his family home in the greater Philadelphia area. Jennifer had reached out to him last night, and he was happy to drive over and see us. We had several good conversations with him during my convalescence, and he had written a very kind and inspirational letter after we returned home. It was good to visit with him again. He is a good man.
Eventually, we met with Dr. Plimack and one of her fellows. Dr. Plimack gave us the results of the blood work -- everything within normal ranges -- and the CT scan. No bottom line of the scan was there was "no measurable disease." Comparing today's scan to my earlier scans, there was nothing noted in the bones, lungs, liver, or other organs that was suggestive that a metastatic tumor had started to form. This is very good news.
The radiologist did report seeing a 3.3 cm lymphocele in the right pelvic area. A lymphocele is an abnormal collection of lymphatic fluid that can occur following surgery. Lymphoceles apparently are commonly seen following surgical procedures like mine in which large amounts of lymphatic tissue are removed. Lymph systems have a low concentration of clotting factors and has no platelets. Lymphatic vessels are devoid of smooth muscle and therefore lack any constrictive properties. It's something that my doctors will continue to monitor; lymphoceles frequently resolve on their own, but if it continues to grow, it can be drained.
We also discussed the challenges I have been facing with the neobladder, the stricture, and the sleep deprivation. I told Dr. Plimack that I have noticed during my twice-daily catheterizations that it has been getting more difficult to thread the catheter past the stricture, suggesting that the stricture is growing back. I said how Dr. Trinity B. at Hopkins had said that there was a possibility that it might come back, and that it might take several attempts to get the scar tissue under control. Dr. Plimack said that I should continue to try to remedy that issue, but if it was continuing to so adversely impact my quality of life, I might want to consider having my neobladder changed to an ilial conduit, e.g., an external urine collection bag. I told her that I had been marked for an ilial conduit prior to my surgery, and left the decision in Dr. Steinberg's hands, so I was ok with that if an ileal conduit what the best option. As I understand it, it could take at least six to nine months to see if the neobladder and stricture issues could be resolved before doing another major surgery. Dr. Plimack agreed that doing the more incremental steps first made sense, but if the stricture issues can't be resolved, then an IC might be the way to go.
Dr. Plimack also suggested that I consider taking a longer leave of absence from work while I tried to remedy the issues with my neobladder. She suggested that taking the pressure off having to try to balance work while suffering from such ongoing sleep deprivation might be the best way to go. I realized that I had been thinking of the disability decision as a one-time, irreversible decision, and that I should instead look at it as an interim decision. There is precedent for that in my firm -- several years ago, another partner was diagnosed with a different form of cancer, took an extended leave to deal with it, came back for a year or so, had a relapse, took more time off, and is now working on a flexible schedule.
We also talked about whether there were any second-line therapies that I should be considering. I said how Drs. Schoenberg and Steinberg both had encouraged me to find a second-line therapy. Dr. Plimack said that, unfortunately, she was not aware of anything that she could recommend. We referenced the fact that bladder cancer was a tricky cancer, with lots of different genetic mutations (more than a dozen) in most cases. I asked whether it made sense to have my cancer cell genome mapped, and she said not yet, because right now it would not provide any actionable information. Later, if I had a solid tumor, then it could be mapped relatively quickly. She said that the genetic mapping technology is racing forward so quickly that even 6 months or a year will make a big difference in what information can be gathered and used.
Dr. Plimack said that, as long as the urothelial cancer is floating around on the microscopic level in my lymphatic system, but not presenting as a solid tumor, there is no known efficacious treatment: no chemo, no radiation, no diet, or other alternative therapy, had been shown to have any beneficial effect on my form of cancer. We talked about options such as diet (e.g., no animal protiens, high flax seed oil, crushed asparagus, etc.), hypothermia (heating up the cancer cells), and so on, and Dr. Plimack said that none of those had been proven to work. We talked about how some Stage IV cancer patients would sometimes grab onto any idea when western medicine could not offer any treatment. Dr. Plimack was careful not to dismiss anything, but to instead say that followers of evidence-based medicine could not recommend any of them.
This conversation was consistent with my earlier conversations with Dr. Apolo of NIH, Dr. Aragon-Ching at GW, and Drs. Kim and Santa-Maria at Hopkins. Maybe they're all captives of our country's medical education system, but I tend to agree with them.
All in all, this was a useful day with good news and good information. It was worth it to drive up to Philly and back in the rain. My next set at Fox Chase scans are scheduled for Dec. 4.
So after the nurse accessed my port, she drew 14 (!) vials of blood -- so much that the needle clotted up on the 11th vial, and she had to put in a second access line. She left in the access line so it could be used for the iodine injection for the CT scan. That's always an interesting feeling as the iodine is injected into your system -- you feel this warm feeling starting in your chest, then quickly spreading throughout your system in about 10 seconds, ending with the most intense heat in the bowels. I guess that tells me where I have the most blood. After I emerged from the spinning magnetic donut, I was released from my pre-scan fast, so Jennifer and I ate in the hospital cafeteria that one of the nurses said was the best of the three on site. Nothing special -- the other two must be pretty bad, I thought.
While we waited for the scan to be read by the radiologist and the report prepared, we chatted with Michael, one of the novices from the Chicago friary that hosted us in May. After three years in the seminary, this summer he decided to shift gears and returned back to his family home in the greater Philadelphia area. Jennifer had reached out to him last night, and he was happy to drive over and see us. We had several good conversations with him during my convalescence, and he had written a very kind and inspirational letter after we returned home. It was good to visit with him again. He is a good man.
The radiologist did report seeing a 3.3 cm lymphocele in the right pelvic area. A lymphocele is an abnormal collection of lymphatic fluid that can occur following surgery. Lymphoceles apparently are commonly seen following surgical procedures like mine in which large amounts of lymphatic tissue are removed. Lymph systems have a low concentration of clotting factors and has no platelets. Lymphatic vessels are devoid of smooth muscle and therefore lack any constrictive properties. It's something that my doctors will continue to monitor; lymphoceles frequently resolve on their own, but if it continues to grow, it can be drained.
We also discussed the challenges I have been facing with the neobladder, the stricture, and the sleep deprivation. I told Dr. Plimack that I have noticed during my twice-daily catheterizations that it has been getting more difficult to thread the catheter past the stricture, suggesting that the stricture is growing back. I said how Dr. Trinity B. at Hopkins had said that there was a possibility that it might come back, and that it might take several attempts to get the scar tissue under control. Dr. Plimack said that I should continue to try to remedy that issue, but if it was continuing to so adversely impact my quality of life, I might want to consider having my neobladder changed to an ilial conduit, e.g., an external urine collection bag. I told her that I had been marked for an ilial conduit prior to my surgery, and left the decision in Dr. Steinberg's hands, so I was ok with that if an ileal conduit what the best option. As I understand it, it could take at least six to nine months to see if the neobladder and stricture issues could be resolved before doing another major surgery. Dr. Plimack agreed that doing the more incremental steps first made sense, but if the stricture issues can't be resolved, then an IC might be the way to go.
Dr. Plimack also suggested that I consider taking a longer leave of absence from work while I tried to remedy the issues with my neobladder. She suggested that taking the pressure off having to try to balance work while suffering from such ongoing sleep deprivation might be the best way to go. I realized that I had been thinking of the disability decision as a one-time, irreversible decision, and that I should instead look at it as an interim decision. There is precedent for that in my firm -- several years ago, another partner was diagnosed with a different form of cancer, took an extended leave to deal with it, came back for a year or so, had a relapse, took more time off, and is now working on a flexible schedule.
We also talked about whether there were any second-line therapies that I should be considering. I said how Drs. Schoenberg and Steinberg both had encouraged me to find a second-line therapy. Dr. Plimack said that, unfortunately, she was not aware of anything that she could recommend. We referenced the fact that bladder cancer was a tricky cancer, with lots of different genetic mutations (more than a dozen) in most cases. I asked whether it made sense to have my cancer cell genome mapped, and she said not yet, because right now it would not provide any actionable information. Later, if I had a solid tumor, then it could be mapped relatively quickly. She said that the genetic mapping technology is racing forward so quickly that even 6 months or a year will make a big difference in what information can be gathered and used.
Dr. Plimack said that, as long as the urothelial cancer is floating around on the microscopic level in my lymphatic system, but not presenting as a solid tumor, there is no known efficacious treatment: no chemo, no radiation, no diet, or other alternative therapy, had been shown to have any beneficial effect on my form of cancer. We talked about options such as diet (e.g., no animal protiens, high flax seed oil, crushed asparagus, etc.), hypothermia (heating up the cancer cells), and so on, and Dr. Plimack said that none of those had been proven to work. We talked about how some Stage IV cancer patients would sometimes grab onto any idea when western medicine could not offer any treatment. Dr. Plimack was careful not to dismiss anything, but to instead say that followers of evidence-based medicine could not recommend any of them.
This conversation was consistent with my earlier conversations with Dr. Apolo of NIH, Dr. Aragon-Ching at GW, and Drs. Kim and Santa-Maria at Hopkins. Maybe they're all captives of our country's medical education system, but I tend to agree with them.
All in all, this was a useful day with good news and good information. It was worth it to drive up to Philly and back in the rain. My next set at Fox Chase scans are scheduled for Dec. 4.
Subscribe to:
Posts (Atom)