One year ago today I was starting my first neoadjuvant chemotherapy session. Neoadjuvant means chemo before having surgery to cut out the cancer. Neoadjuvant chemo is not a cure, but is a protective measure to reduce the odds that the cancer that should have been removed via TURBT will grow and spread.
That first day of my neoadjuvant chemo took more than 7 hours. I remember blogging in real time about it, and being impatient because the GW cancer center was taking so long to poison me. I did three complete GemCis rounds of chemo, then had a series of scans in mid-April that showed that the chemo had failed. The bladder tumor that had been removed in two TURBT's on December 1, 2011 and January 5, 2012 had aggressively returned in less than 4 months, larger and more extensive than before.
With the benefit of 20/20 hindsight, because my cancer was the most aggressive form, with micropapillary features and tendrils, I now believe that I should not have had neoadjuvant chemotherapy. Instead, I should have had my bladder and prostate removed in January 2012. The decision to proceed with neoadjuvant chemo was made by relying on the recommendations of three different sets of doctors - those at GW, Johns Hopkins, and Harvard, as well as my review of the literature that suggested that patients with bladder cancer who had neoadjuvant chemo had a 15-20% better chance of long-term survival than those who did not. What the studies did not show, and what I feel the doctors did not discuss adequately with me, was whether those statistics were true for those with micropapillary carcinomas. It was not until I was deep into my third round of chemo that I was alerted by a fellow bladder cancer survivor to the grim facts of the very high mortality rate of patients with micropapillary bladder cancer and who waited to have the bladder removed.
The scans in December 2011 did not suggest that my cancer had metastatized through the bladder wall and into my lymph nodes. The scans in April 2012 suggested that it had, and post-pathology surgery confirmed that 12 nodes outside of the bladder were positive. If I had the surgery in January 2012, instead of hoping for the prophylactic effect of the neoadjuvant chemo, then it is far more likely that the cancer would have been contained to my bladder, and completely removed with surgery. I might still be having the same issues with the nighttime incontinence, but the risk of metastatic cancer recurrence would have been much lower.
I write this not out of any bitterness or anger, but instead for insight to future readers who are going through the same thing. I believed that the decision to start neoadjuvant chemo was correct at the time, based upon what I was being told and had read. Generally speaking, neoadjuvant chemo may well be the right treatment for many bladder cancer patients. But future patients should consider the following:
What is the staging? The higher the staging, the more serious the cancer is, and the faster you want to move. T2 or higher means that the bladder must go. T1, maybe. Ta and CIS, probably not.
Is the tumor localized in only one place, or are there multiple tumors? (I had nearly a dozen.) The more tumors, then worse it is. A bladder with multiple tumors is hopelessly compromised. Get over any thought of holding onto that diseased organ, and get rid of it. The sooner, the better. By contrast, it may be possible to save a bladder with only a single low-grade tumor.
Des the cancer have micropapillary features, or tendrils, suggesting that it is highly aggressive? If so, moving quickly to get it out might be best. Note than many pathologists and even some urologic oncologists are not trained to identify micropapillary features, as they occur in less than 2% of all bladder cancers. Asking for a second opinion of the TURBT slides is a good idea.
What are your co-morbidities or other complications? If you are a candidate for RCP (radical cystoprostatectomy, the surgery that removes the bladder and prostate), and it is indicated, then don't delay. A delay of only a few months can be the difference between keeping the cancer localized in the organ, and thereby having a high chance of recovery, or having the cancer spread, and dramatically reducing the odds of survival.
Good luck!
Wednesday, January 30, 2013
Tuesday, January 29, 2013
Mets Day 292 - No artifical sphincter for me
Today I spoke with Dr. Greg Bales of the University of Chicago. We had been trading calls for a couple of days. He's the incontinence specialist who works with Gray Steinberg. Dr. Bales was familiar with my history, and sympathized how nocturnal incontinence can be a real challenging problem, especially with
neobladder patients. He said that having sleep disruption in the way that I have been suffering is relatively uncommon. He said that most men with nocturnal incontinence may wake up but are able to go back to sleep and get adequate rest,unlike what I'v ebeen dealing with fo the past 7 months.
We discussed my options. To my surprise, he said that, because I am usually continent during the day, he does not think
that I am a candidate for an artificial sphincter. Those are usually for patients that have no
control on all days. My daytime continence suggests that my pelvic floor is acting as a sufficient sphincter. The function of the sphincter can be assessed by the urodynamic assessment. If the assessment shows that the sphincter isn’t working properly, then I may be a candidate for an artificial sphincter. But because an artificial sphincter has its own complications and risks, and because I am dry during
the day, based upon the information he has, he would not recommend doing the surgery.
He recommends that I have a urodynamic assessment locally. He does not agree with Mark Schoenberg that I have to go to Chicago to have
this done. He also recommended that I create another voiding diary, recording my intake and
output. I did one in June of 2012, and another in July of 2012, and so I know the drill.
I asked him what my options there were, since he did not recommend an artificial sphincter. He said that the most common thing is that patients just wear pads and deal with it. But most patients are not like me, who wake up and can't go back to sleep when they leak. He said that some patients try self-catheterizing each night (been there, done that);
others try leaving the catheter in overnight (done that with Foleys);
others have used condom catheters (tried that, hated it). For anything else, he said I should work with a urologist who specializes in male nocturnal incontinence. He recommended a specialist associated with the University of Maryland, and offered to make the introduction. Looks like I'll continue my search for a solution. No easy fixes, I'm afraid.
Wednesday, January 23, 2013
Mets Day 286 - Of Artificial Sphincters
In the past few days I've been exchanging emails with Gary Steinberg, the Chicago surgeon who did my RCP and neobladder last year. I emailed him the following:
"I’d welcome your input re my
options. I continue to have nighttime incontinence, with its attendant sleep
deprivation. On Sept, 14, 2012, Trinity Bivalacqua stripped away some of the
scar tissue in the bladder neck. Per his instructions, I continued with CIC 2x
daily. On Nov. 21, you advised me to continue with CIC, checking for overflow
incontinence. I catheterize before going to bed when I feel that I am not able
to void completely, but usually have less than 50 ml left. The times that I’ve
catheterized in the middle of the night after leaking, I usually have less than
150 ml, so my leaking does not appear to be overflow incontinence. Recently,
I’ve noticed that I’ve had to strain more when voiding. My flow usually is weak
and sporadic. My questions are:
1.
Should I be doing any kind of physical
therapy to help with the nighttime incontinence? If so, what, and with
whom?
2. Should I be evaluated to see if there is
additional scar tissue or another physical problem that can be corrected to help
reduce the nighttime incontinence? Should you do that, or should I have my
local urologist do that?
3.
I leak at night, even after voiding. When I
leak, I wake up and find it difficult to go back to sleep. Is there anything
that can be done to help me be less sensitive to that, apart from taking Ambien
or Lunesta?
4.
What options are there to help me with the
incontinence? David Pulver of BCAN mentioned a sphincter valve. Should I
consider that? Or should I consider having the neobladder changed to an
IC?
5. Should I schedule an appointment with you?
Obviously, flying out there is not convenient for me, but I’ll do whatever is
appropriate to try to address this.
6. Are you aware of any other clinical trials or other
therapies I should be doing to minimize the risk of metastization?"
He responded as follows:
"Thank you for your note and
follow-up. Your nocturnal enuresis is problematic. From what you describe it
does not sound like overflow incontinence. If you are able to catheterize
yourself then I think that a bladder neck contracture is unlikely. Medications
such as Ditropan or Detrol may potentially help increase your bladder capacity
as well as decrease any bladder hyperactivity you may be experiencing which may
be a cause of your nighttime leakage. However, these medications may cause
constipation and make it more difficult for you to void. Other causes of
nocturnal enuresis include loss of neurologic control of the external
sphincter."
"I think that your options
include a urodynamic assessment of your neobladder to assess capacity,
compliance and pressures to see if we can make a diagnosis to direct therapy. We
have implanted artificial sphincters in some patients as well. Please let me know if you would
like to come to Chicago for the evaluation and we will arrange it for
you."
I also exchanged emails with Gary Schoenberg at Hopkins, and he also recommends that I go back and see Dr. Steinberg. Apparently it's best to have the surgeon who built the neobladder mess around with it. So another trip to Chicago might be in my near future. What I need to find out is whether I would have the assessment done and, if it suggested that an artificial sphincter is appropriate, have that implanted during the same trip, or have different trips.
Here is some information on artificial sphincters:
A YouTube video with a patient experience and illustrations is here.
The WebMD article is here.
The Medscape link is here.
Here is a a recent review article, Artificial Urinary Sphincter: Long-Term Results and Patient Satisfaction.
Bottom line: An artificial sphincter can help, but it's not perfect. But aside from my wife, what is?
Monday, January 21, 2013
Mets Day 284 - Part-time work
For the past couple of weeks, I have been talking with my firm's managing partner about the terms of my employment for 2013. The firm has been most generous in 2012, providing my with full pay for the year, even though I was out for many months, and working at less than full capacity for much of the rest of the year. I know that I could not work 100% while I continue to deal with my cancer and the complications from the treatment, but I did not want to completely stop working, for many reasons: (1) I wanted the hope that I can return to near-normal after I beat this; (2) while I am fighting the good fight, I will still need health insurance for my and my family, and staying affiliated with the firm lets me stay on the firm's group policy; (3) I can still do some legal work, even if it is not full-time; (4) I feel obligations to my clients, even though the amount of time I will be spending will be much reduced; (5) there is a psychological benefit to keeping my mind engaged in my profession: and (6) the extra money helps.
My firm's management was most flexible and supportive of these goals, and was willing to consider any proposal that would help me with my objectives. I wanted to be fair to the firm that has given me so much support. Last week, I proposed, and management agreed, that I receive a fixed annual compensation for 2013 of about 15% of my 2012 compensation, with true-up/bonus provisions based upon billable hours and income from certain client matters, and the ability to return to full participation in the partnership any time that my health allows. I am satisfied with this arrangement, and it seems to be fair all around.
I expect that, for the near future, I will be billing only 20-30 hours per month. I don't yet know how often I will be going into the office, as opposed to working from home. Each day is determined in large part by how poorly I slept the night before. I've learned that, even if I feel like I got a relatively decent night's sleep (the key being relative -- 4 or 5 hours, as opposed to 7 or 8 before surgery), then I might have a good day. Less than that, bleah. And even on a "good" day, I tend to fade by the afternoon. Nighttime activities are even more difficult.
I am tentatively exploring my newfound freedom to define my days. Over the next couple of months, I will see a pattern emerging in this new part-time schedule. I'm not yet sure what it will be, however. It's a strange thing to not have either the expectation that I will go into work for a full day each day, or to even have an aspiration to do so. I've been doing that for 25 years, and before that, it was school or other full-time activities that in many ways defined my day. Instead of the tyranny of the billable hour, my life activities are more influenced by how leaky my neobladder has been, and how much sleep I can get. I have a number of things on my to-do list, but so far I have shown remarkably little interest. I need to figure out how I can find motivation to do things even when my body wants more rest.
My firm's management was most flexible and supportive of these goals, and was willing to consider any proposal that would help me with my objectives. I wanted to be fair to the firm that has given me so much support. Last week, I proposed, and management agreed, that I receive a fixed annual compensation for 2013 of about 15% of my 2012 compensation, with true-up/bonus provisions based upon billable hours and income from certain client matters, and the ability to return to full participation in the partnership any time that my health allows. I am satisfied with this arrangement, and it seems to be fair all around.
I expect that, for the near future, I will be billing only 20-30 hours per month. I don't yet know how often I will be going into the office, as opposed to working from home. Each day is determined in large part by how poorly I slept the night before. I've learned that, even if I feel like I got a relatively decent night's sleep (the key being relative -- 4 or 5 hours, as opposed to 7 or 8 before surgery), then I might have a good day. Less than that, bleah. And even on a "good" day, I tend to fade by the afternoon. Nighttime activities are even more difficult.
I am tentatively exploring my newfound freedom to define my days. Over the next couple of months, I will see a pattern emerging in this new part-time schedule. I'm not yet sure what it will be, however. It's a strange thing to not have either the expectation that I will go into work for a full day each day, or to even have an aspiration to do so. I've been doing that for 25 years, and before that, it was school or other full-time activities that in many ways defined my day. Instead of the tyranny of the billable hour, my life activities are more influenced by how leaky my neobladder has been, and how much sleep I can get. I have a number of things on my to-do list, but so far I have shown remarkably little interest. I need to figure out how I can find motivation to do things even when my body wants more rest.
Tuesday, January 15, 2013
Mets Day 277 - On Estate Planning
When I was diagnosed with metastatic cancer on May 15, 2012, I understood that the cancer likely would be my cause of death. I already had read and understood that there was a 88-90% chance that urothelial cancer in the lymphatic system would spread, most likely to my spine, lungs, or liver, and that I would not live longer that 5 years. Dr. Steinberg acknowledged those statistics when he discussed the pathology report with us on May 15, but also emphasized that there was no way of knowing whether, when, or what the disease would do to my body. The doctors at GW, Hopkins, Fox Chase, and NIH, all have told me the same thing. The odds are not in my favor, there is no established medical treatment for microscopic metastatic urothelial cancer, but I'm young, I had surgery very quickly after the chemo failed and the cancer had metasized, and a lot of lymph notes were removed. The common theme of the doctors was that I should live my life as best I can, and focus on the joy in each day. Death comes to all sooner or later. In my case, it's likely to be sooner than later. I am reconciled to these facts.
One might expect that, in the face of these facts, that I would be motivated to revisit my estate planning, look at my will and trusts, and pull together all of my financial information. While I have done pieces of that, I have not completed all that I should. Whether I've been focused on my recovery from surgery, or returning to work, or pulling together information for the insurance companies, or planning our family vacation, or just plain avoidance, I have not been eager to work on estate planning.
This morning, Jennifer and I sat in the hot tub and talked for about an hour about financial issues, real estate, and touched on estate planning. We decided that it made sense to put our lake house up for rent this summer, and also explore the possibility of selling it. Since I have decided to live life at an accelerated pace, doing so likely will involve more travel and other experiences different from going to the lake house. The lake house has served its purpose for a decade; time to let others enjoy it. We also talked about whether we should sell our Great Falls house, and decided that we should not do so in the near future. After the nest empties in 2016 or so, we (or Jennifer, if I'm gone) likely will downsize. We talked about whether Jennifer would want to buy elsewhere, or rotate around different parts of the country, renting month to month while visiting family, especially while the kids decide where they will settle. We also discussed insurance, our current financial status, my negotiations with my law form regarding 2013 compensation, and several other issues.
With that conversation fresh on my mind, I read a New York Times story that reinforced what Jennifer and I talked about this morning. The story talks about a woman in Seattle whose husband was killed in a biking accident, and how she had to struggle to pull together all of her family's financial information. She started a web site that collected all of her experiences and lessons learned. Her web site also has a link to a useful Wall Street Journal list of 25 documents you need before your death, and also to a BBC booklet, Planning a Good Death. After reviewing all of this stuff, I'm slightly more motivated than before to revisit my estate planning.
For starters, I'll list what I've done so far, then I'll list what I need to do:
Estate planning already done for Jennifer and myself, in 2000:
Signed will
Signed revokable trust
Signed irrovokable life insurance trust
Signed advanced medical directive
Signed durable power of attorney
Lawyer's letters of instruction
More recent estate planning done in the past 6 months:
Transfer to Jennifer of all custodial accounts, including education savings accounts
Compilation of all financial information, including statements for all accounts, revenue sources, bills paid, and login information and passwords
Estate planning I still need to do:
Have the 2000 wills and trusts and other documents reviewed and updated as appropriate
Make sure all property is properly titled
Better organize recent financial records, statements, etc.
Continue to educate Jennifer and kids on financial information
Write letters of instruction
Other legacy stuff to do before I die:
Personal letters to family members
Organize personal history, journals, pictures, videos, etc.
I'm sure there will be other things I'll think of as I go along, but this gives me a good idea of what I need to do now.
One might expect that, in the face of these facts, that I would be motivated to revisit my estate planning, look at my will and trusts, and pull together all of my financial information. While I have done pieces of that, I have not completed all that I should. Whether I've been focused on my recovery from surgery, or returning to work, or pulling together information for the insurance companies, or planning our family vacation, or just plain avoidance, I have not been eager to work on estate planning.
This morning, Jennifer and I sat in the hot tub and talked for about an hour about financial issues, real estate, and touched on estate planning. We decided that it made sense to put our lake house up for rent this summer, and also explore the possibility of selling it. Since I have decided to live life at an accelerated pace, doing so likely will involve more travel and other experiences different from going to the lake house. The lake house has served its purpose for a decade; time to let others enjoy it. We also talked about whether we should sell our Great Falls house, and decided that we should not do so in the near future. After the nest empties in 2016 or so, we (or Jennifer, if I'm gone) likely will downsize. We talked about whether Jennifer would want to buy elsewhere, or rotate around different parts of the country, renting month to month while visiting family, especially while the kids decide where they will settle. We also discussed insurance, our current financial status, my negotiations with my law form regarding 2013 compensation, and several other issues.
With that conversation fresh on my mind, I read a New York Times story that reinforced what Jennifer and I talked about this morning. The story talks about a woman in Seattle whose husband was killed in a biking accident, and how she had to struggle to pull together all of her family's financial information. She started a web site that collected all of her experiences and lessons learned. Her web site also has a link to a useful Wall Street Journal list of 25 documents you need before your death, and also to a BBC booklet, Planning a Good Death. After reviewing all of this stuff, I'm slightly more motivated than before to revisit my estate planning.
For starters, I'll list what I've done so far, then I'll list what I need to do:
Estate planning already done for Jennifer and myself, in 2000:
Signed will
Signed revokable trust
Signed irrovokable life insurance trust
Signed advanced medical directive
Signed durable power of attorney
Lawyer's letters of instruction
More recent estate planning done in the past 6 months:
Transfer to Jennifer of all custodial accounts, including education savings accounts
Compilation of all financial information, including statements for all accounts, revenue sources, bills paid, and login information and passwords
Estate planning I still need to do:
Have the 2000 wills and trusts and other documents reviewed and updated as appropriate
Make sure all property is properly titled
Better organize recent financial records, statements, etc.
Continue to educate Jennifer and kids on financial information
Write letters of instruction
Other legacy stuff to do before I die:
Personal letters to family members
Organize personal history, journals, pictures, videos, etc.
I'm sure there will be other things I'll think of as I go along, but this gives me a good idea of what I need to do now.
Monday, January 14, 2013
Mets Day 276 - sleepless again
The past two nights have been pretty short on sleep. The bedtime routines were the same as usual - take the Lunesta and baby aspirin, void the neobladder as much as possible, including occasionally catheterizing, brush teeth, put on the Depends or the absorbency pad, pray with Jennifer, then read until I get too tired to keep my eyes open, get up, void one more time, then go to sleep. The trouble is, I didn't actually fall asleep. I tossed and turned, kept waking up, went to the bathroom several times, tried to get back to sleep, dozed a bit, but could not get into any rhythm. Ok, every few nights that happens. I sleptwalked through Sunday, going to church then trying to watch the playoff games but not really into them.
Sunday night I knew that I was so tired that sleep would not be a problem. Jennifer has driven up to Canaan Valley for an overnight visit with friends, so I had the bed to myself. Same bedtime routine (only earlier -- this time, lights off just pas 11 pm). I did go to sleep, but at 2 am was jolted awake by a wet patch on the bed. My absorbent pad in my underwear had shifted and failed to perform its purpose. I sat in the hot tub, put on a Depends, put a towel under the wet sheet, and rolled over to Jennifer's side. Further sleep eluded me. Toss, turn, up, down, nothing was effective. Maybe I should have read the Book of Mormon: Chloroform in print, Mark Twain called it. But it usually doesn't have that effect on me. In any event, by the time the sun rose. I was already exhausted. Monday wasn't a productive day.
It's been a while since I've had two back-to-back nights that were so bad. Usually, I can get at least 4 hours of consecutive sleep every other night, and sometimes I can get as much as 5 or even 6 hours in a night. This past weekend was a reminder of how fragile my physical state really is.
Sunday night I knew that I was so tired that sleep would not be a problem. Jennifer has driven up to Canaan Valley for an overnight visit with friends, so I had the bed to myself. Same bedtime routine (only earlier -- this time, lights off just pas 11 pm). I did go to sleep, but at 2 am was jolted awake by a wet patch on the bed. My absorbent pad in my underwear had shifted and failed to perform its purpose. I sat in the hot tub, put on a Depends, put a towel under the wet sheet, and rolled over to Jennifer's side. Further sleep eluded me. Toss, turn, up, down, nothing was effective. Maybe I should have read the Book of Mormon: Chloroform in print, Mark Twain called it. But it usually doesn't have that effect on me. In any event, by the time the sun rose. I was already exhausted. Monday wasn't a productive day.
It's been a while since I've had two back-to-back nights that were so bad. Usually, I can get at least 4 hours of consecutive sleep every other night, and sometimes I can get as much as 5 or even 6 hours in a night. This past weekend was a reminder of how fragile my physical state really is.
Wednesday, January 9, 2013
Mets Day 271 - Plans for 2013
My plans for the new year are starting to come into focus. The variables are falling into place.
One significant unknown was with regard to disability benefits. It now appears that I will be able to receive the benefits of at least some of my private disability insurance policies. Over the past 15 years or so, I had purchased and paid premiums with post-tax dollars on five different disability insurance policies: Three with MassMutual, one with MetLife, and two with Unum. I collected these policies over my career with two different law firms, and have added coverage from time to time. The premium cost was not trivial, but I'm now glad that I purchased and maintained those policies.
The three MassMutual Policies, and one Unum policy, were income replacement policies that would pay varying amounts if my ability to maintain my income was compromised due to illness or accident. The MetLife policy would make payments into a retirement account if my earning ability, and thus my ability to save for retirement, was compromised. The other Unum policy was for long term home care as needed. I have had those applications pending for months, some since August 2012, others since early October. I ended up having to personally collect the medical records and send them to the insurance companies, because either the insurance companies or the docs were slow-walking the records requests.
Upon my return from my vacation with my family, I found that MassMutual had approved my disability applications on all policies I had with them. They concluded that my 6 month elimination period had been met, and sent me a check to cover the first two months of benefits. Future benefits will be direct deposited into my account.
Likewise, MetLife has approved the payment of retirement benefits under their policy. Those benefits will be made into an irrevocable trust, and I will have the ability to direct the investment, sort of like an IRA. Those benefits will become available at age 65 or to my estate upon my death, whichever occurs first.
I am still awaiting a decision by Unum on its two different policies. If approved, one will add to my monthly income replacement benefit, and the other will reimburse me for any needed home health care. Unum had told me right before I left on vacation that it was going to approve the home benefits claim, but upon my arrival home, I saw a letter from them saying that Unum needed more time to make a decision.
The income replacement policies have an interesting aspect that directly affects my work plans. Because they are income replacement policies, they are pro-rated based upon how much I work and am paid by my law firm. If as a result of my disability my income from my legal practice falls 80% or more, then I am considered totally disabled and will receive 100% of the insurance benefit. If my income from my law practice falls less than 20% due to my disability, then I am not considered disabled, and not eligible for benefits. If my law firm income is between 20% and 80% of before, and the loss is due to my disability, then I am partially disabled, and my benefits are pro-rated. For example, if my law firm income is 50% of pre-disability, then I would get 50% of my benefits.
The total amount of benefits does not equal the amount of earnings I had at the law firm, however. The maximum benefits equal only about 60% of my pre-disability income. But because I paid for these policies with taxable dollars, all of the benefits are tax-free. I don't know what my marginal tax rate will be in 2013, but it likely will be at least 25 or 30%, so a dollar in insurance benefits is worth at least $1.25, and probably more, than a dollar in taxable earned income.
The curious effect of the way these policies are structured, coupled with the tax consequences, is that I have no economic incentive to work and earn more than 20% of my prior income, unless I will be earning more than 65%. For example (these are not real numbers, just a hypothetical), if my annual total pre-disability gross earnings was $150,000, and the maximum insurance benefits was $100,000, then if as a result of my disability my earnings were 50% of before (or $75,000 in taxable dollars), the insurance companies would pay 50% of the benefit, for $50,000 in non-taxable dollars. My total income would be $125,000, of which $50,000 would be tax-free. But if my post-disability earnings were only 20% (or $30,000 in taxable dollars), then I would receive 100% of disability benefits, or $100,000 in tax-free income. In that instance, my total income would be $130,000, with $100,000 being tax free. Thus, working and earning 50% of before provides me with less income than earning working and earning 20%. I figure that the break-even point is about 65% of pre-disability income.
Of course, my preference is that I would be completely cured and able to work 100%, without any disability. But as long as I have my continued issues with incontinence, sleep deprivation, the increasing likelihood that I might have another major surgery, coupled with the high statistical likelihood that the cancer will metastasize into untreatable secondary tumors, I do not believe that I will be able to resume anything resembling a normal work schedule, or even something around 50%. My primary focus is on my physical, emotional, and spiritual health. I intend to draw upon my disability benefits to provide financial means for me and my family in the meantime.
Thus, for the near future, my plan is to contribute as I can to my law firm, but billing at a substantially reduced pace. The firm reports to the insurance company each month the number of hours worked, and how much I am paid, then the insurance company makes its determination of whether a full or pro-rated benefit is paid, then it will make its payment. I'll keep (and continue to pay for) my health care and other benefits through the firm, and keep the door open to a return in the event that I recover and am able to perform a greater amount of work.
I also will co-teach my law school class this semester, but would not be surprised if this is my last year teaching. I simply cannot foretell how I will be feeling a year from now. As I wrote last month, my planning horizon has been reduced to about a year on a rolling basis, and I am increasingly comfortable with that time line.
As I ramp down my involvement in my legal practice, I expect to increase my involvement in various community, charitable, and religious organizations. I especially want to spend more time with my family, both at home and traveling. I have some specific plans, as well as some vague ideas that will take form in the coming weeks and months. As those plans take shape, I will share them as appropriate.
One significant unknown was with regard to disability benefits. It now appears that I will be able to receive the benefits of at least some of my private disability insurance policies. Over the past 15 years or so, I had purchased and paid premiums with post-tax dollars on five different disability insurance policies: Three with MassMutual, one with MetLife, and two with Unum. I collected these policies over my career with two different law firms, and have added coverage from time to time. The premium cost was not trivial, but I'm now glad that I purchased and maintained those policies.
The three MassMutual Policies, and one Unum policy, were income replacement policies that would pay varying amounts if my ability to maintain my income was compromised due to illness or accident. The MetLife policy would make payments into a retirement account if my earning ability, and thus my ability to save for retirement, was compromised. The other Unum policy was for long term home care as needed. I have had those applications pending for months, some since August 2012, others since early October. I ended up having to personally collect the medical records and send them to the insurance companies, because either the insurance companies or the docs were slow-walking the records requests.
Upon my return from my vacation with my family, I found that MassMutual had approved my disability applications on all policies I had with them. They concluded that my 6 month elimination period had been met, and sent me a check to cover the first two months of benefits. Future benefits will be direct deposited into my account.
Likewise, MetLife has approved the payment of retirement benefits under their policy. Those benefits will be made into an irrevocable trust, and I will have the ability to direct the investment, sort of like an IRA. Those benefits will become available at age 65 or to my estate upon my death, whichever occurs first.
I am still awaiting a decision by Unum on its two different policies. If approved, one will add to my monthly income replacement benefit, and the other will reimburse me for any needed home health care. Unum had told me right before I left on vacation that it was going to approve the home benefits claim, but upon my arrival home, I saw a letter from them saying that Unum needed more time to make a decision.
The income replacement policies have an interesting aspect that directly affects my work plans. Because they are income replacement policies, they are pro-rated based upon how much I work and am paid by my law firm. If as a result of my disability my income from my legal practice falls 80% or more, then I am considered totally disabled and will receive 100% of the insurance benefit. If my income from my law practice falls less than 20% due to my disability, then I am not considered disabled, and not eligible for benefits. If my law firm income is between 20% and 80% of before, and the loss is due to my disability, then I am partially disabled, and my benefits are pro-rated. For example, if my law firm income is 50% of pre-disability, then I would get 50% of my benefits.
The total amount of benefits does not equal the amount of earnings I had at the law firm, however. The maximum benefits equal only about 60% of my pre-disability income. But because I paid for these policies with taxable dollars, all of the benefits are tax-free. I don't know what my marginal tax rate will be in 2013, but it likely will be at least 25 or 30%, so a dollar in insurance benefits is worth at least $1.25, and probably more, than a dollar in taxable earned income.
The curious effect of the way these policies are structured, coupled with the tax consequences, is that I have no economic incentive to work and earn more than 20% of my prior income, unless I will be earning more than 65%. For example (these are not real numbers, just a hypothetical), if my annual total pre-disability gross earnings was $150,000, and the maximum insurance benefits was $100,000, then if as a result of my disability my earnings were 50% of before (or $75,000 in taxable dollars), the insurance companies would pay 50% of the benefit, for $50,000 in non-taxable dollars. My total income would be $125,000, of which $50,000 would be tax-free. But if my post-disability earnings were only 20% (or $30,000 in taxable dollars), then I would receive 100% of disability benefits, or $100,000 in tax-free income. In that instance, my total income would be $130,000, with $100,000 being tax free. Thus, working and earning 50% of before provides me with less income than earning working and earning 20%. I figure that the break-even point is about 65% of pre-disability income.
Of course, my preference is that I would be completely cured and able to work 100%, without any disability. But as long as I have my continued issues with incontinence, sleep deprivation, the increasing likelihood that I might have another major surgery, coupled with the high statistical likelihood that the cancer will metastasize into untreatable secondary tumors, I do not believe that I will be able to resume anything resembling a normal work schedule, or even something around 50%. My primary focus is on my physical, emotional, and spiritual health. I intend to draw upon my disability benefits to provide financial means for me and my family in the meantime.
Thus, for the near future, my plan is to contribute as I can to my law firm, but billing at a substantially reduced pace. The firm reports to the insurance company each month the number of hours worked, and how much I am paid, then the insurance company makes its determination of whether a full or pro-rated benefit is paid, then it will make its payment. I'll keep (and continue to pay for) my health care and other benefits through the firm, and keep the door open to a return in the event that I recover and am able to perform a greater amount of work.
I also will co-teach my law school class this semester, but would not be surprised if this is my last year teaching. I simply cannot foretell how I will be feeling a year from now. As I wrote last month, my planning horizon has been reduced to about a year on a rolling basis, and I am increasingly comfortable with that time line.
As I ramp down my involvement in my legal practice, I expect to increase my involvement in various community, charitable, and religious organizations. I especially want to spend more time with my family, both at home and traveling. I have some specific plans, as well as some vague ideas that will take form in the coming weeks and months. As those plans take shape, I will share them as appropriate.
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