This evening Jennifer and I fly to Seattle, where we will spend a few days with two other couples. On Saturday, the six of us will board the NCL Jewel for a 7 day cruise up the inside passage to various places along Alaska's lower panhandle. We'll return to Seattle on June 28, spend a couple of more days there, then fly to Utah on June 30, where we'll visit family (including baby Rose!) and friends. We'll return to DC on July 9. It's a bit less strenuous than last summer's European tour, and we're looking forward to it. I'll probably post a couple of times while we're on the road.
I find that my ability to meaningfully plan ahead is limited to rolling three-month windows. I am mindful that the next scan could show that my cancer is spreading, and that I'll need to plunge into another round of chemotherapy or other form of treatment. I've also discovered that many travel insurance policies specifically exclude complications from preexisting cancer. So we fly Southwest, which has no change fees, and allows credit to be transferred to anyone else, and time our other bookings until after my most recent scan. My next scan is July 15, which means that we have not planned any more trips beyond that.
Each Monday I receive an emails from BCAN listing all of the prior week's questions and journal entries from others dealing with bladder cancer. I typically post about a half-dozen or so responses, and frequently enter into a dialog with fellow patients or their caregivers. This past week, for example, I traded notes with a bladder cancer survivor in his mid-50's who lives only about 20 miles away from me. He's also dealing with a leaky neobladder, and asked:
I saw your post about an incontinence drug, and have questions. Namely,
if it helps you at night, does it inhibit voiding during the day?
I responded:
Talk to your urologist about trying either imipramine or Cymbalta for
nighttime incontinence. Take it at bedtime. Start with about 25 mg, then
try upping it to 50 mg. (A therapeutic dose for the labeled purpose is
over 100 mg, so you should not experience any mood alteration at those
low doses.) Cymbalta didn't work for me, but I found that 50 mg of
imipramine was effective at keeping my neobladder from contracting by
itself for 8-10 hours. I started at 25 mg, detected some improvement,
and followed my urologist's advice to up it to 50 mg to see if that was
better. If I try to void within 8-10 hours of taking the imipramine, I
find that it's harder to squeeze the neobladder, although it's still
possible. It just is a series of short squirts instead of a longer
flow. The effect of the drug wears off after 8-10 hours, so there is no
difference during the day. The urologist who suggested this said that
he'd found about 30% of his patients who had their prostates removed
found some improvement using these low doses of one of these two drugs.
If you don't see any improvement after 2 weeks, then you're in the 70%.
It's worth a shot. There's little downside to trying such low doses, and it helped me a lot.
I also recently traded notes with a woman in New Zealand whose husband was recently diagnosed, and was trying to come to grips with all of the treatment options and information overload. I've been trying to support her by sharing some of my experiences. A cancer diagnosis certainly teaches a new vocabulary, drinking from a firehose can be exhausting. Together, we're better.
Tuesday, June 17, 2014
Wednesday, June 11, 2014
Mets Day 791 - Welcome to Medicare
A couple of days ago I received an envelope welcoming me to Medicare. I looked at the envelope with the same jaundiced eye that I use whenever I receive an AARP mailing. Eventually I peered into the envelope and thumbed through the contents.
A bit of back story: As I explained in a previous post, the federal government classifies all persons with metastatic BC as totally disabled, regardless of how they are otherwise able to physically function. This is because the long-term survival odds are so low for those with mets BC. Thus, in September 2013, the Social Security Administration concluded that I was 100% disabled as of May 2012. After the required 5 month waiting period from the onset of the disability, SSA concluded that I was eligible to receive SSDI benefits as of October 2012. I continue to receive a monthly SSDI payment, and Garrett also gets a monthly payment as a minor.
Another SSA rule says that, if someone under age 65 is found to be totally disabled and eligible for SSDI benefits, then two years after the SSDI benefit eligibility date, that person is eligible to receive Medicare benefits. Thus, the letter stated that I qualify for Medicare effective October 1, 2014, because that is two years and five months after my bladder cancer was confirmed to have metastasized outside of my bladder and into my lymphatic system. (May 2012 + 5 months + 2 years = October 2014.) I don't pretend to understand or agree with the policies behind these time periods, but am just relating how the rules apply to me.
I thumbed through the enclosed Medicare pamphlet and looked at the online handbook, and learned about Medicare Part A, Part B, Part C, and Part D. Part A is "free" (no extra cost to me personally); but there are costs associated with the rest of the coverage. Fighting to keep my eyes from glazing over, I read various warnings about penalties if I didn't properly enroll. I looked into the exceptions, and learned that as long as I have private insurance provided by an employer, I probably didn't have to pay for parts B-D. That continues to be the case with me: as a partner at my law firm, I still receive comprehensive health insurance for me and my family. As an equity partner, I am considered a co-owner, so there is no employer contribution towards my health insurance. In other words, I get to pay 100% of the actual cost of my health insurance for me and my family, which is over $22,000 per year.
I've confirmed with the benefits coordinator at my law firm that my ongoing participation with my law firm's health insurance means that I do not need to pay for Parts B or D of Medicare. If I was to leave my firm's private insurance plan, and go on Medicare, I'd still need to pay for Parts B and D, or join a private insurance company under Part C, in order to have the same type of coverage that I currently have through my law firm. I also confirmed that, if and when I leave my law firm's health insurance, I would not be subjected to a Medicare penalty, as long as I promptly enroll in Medicare Parts B and D, or join a Part C plan.
The problem is, if I was to go on Medicare, I would have to find insurance for the rest of my family, probably through Obamacare. It becomes a cost/benefit analysis: How much would it cost to put together Medicare coverage for me, and alternative health insurance for my family? I assume that it would be possible to stitch together coverage for me and my family, but for now I'm not going to worry about that. Maybe I'll run the numbers at the end of the year and work through the pros and cons, but for now I am grateful that I can continue with the existing United Health Care health insurance that so far has been very good about paying for my care.
I am keenly aware that bladder cancer is the single most expensive cancer to treat on a cost-per-patient average. BCAN's press guide says, "Bladder cancer has a recurrence rate of 50-80 percent and because it requires life-long surveillance, it is the most expensive cancer to treat on a per patient basis." A 2010 article from the Canadian Urology Association Journal confirms: "As measured on the basis of cumulative per patient cost from diagnosis until death, bladder cancer is the most expensive to treat." Just yesterday I received a comment on my prior blog post stating how, for that person, "bladder cancer has been a financial disaster". The cost of my treatment for bladder cancer so far has been over $200,000; not counting the cost of my health insurance premiums, my out-of pocket cost for deductibles and co-pays has been around $2,500.
I feel fortunate for the fact that my private health insurance has covered my treatments. I am grateful for the ongoing support of my law firm. I'm also fortunate that I listened to my insurance agent more than a decade ago and purchased disability insurance with an income replacement. I eventually layered my disability coverage with four different policies. The premiums cost several hundred dollars a month, and are now paying out at 100%. Since I paid the premiums with my own post-tax dollars, the benefits are tax free, which is nice. Those payments greatly alleviate what would otherwise be a highly stressful tension of trying to push myself to work to provide for my family, while at the same time trying to prolong my life through different therapies. I am grateful that I can spend more time with my family during what is likely to be a much shorter life span than I had been anticipating before cancer.
A bit of back story: As I explained in a previous post, the federal government classifies all persons with metastatic BC as totally disabled, regardless of how they are otherwise able to physically function. This is because the long-term survival odds are so low for those with mets BC. Thus, in September 2013, the Social Security Administration concluded that I was 100% disabled as of May 2012. After the required 5 month waiting period from the onset of the disability, SSA concluded that I was eligible to receive SSDI benefits as of October 2012. I continue to receive a monthly SSDI payment, and Garrett also gets a monthly payment as a minor.
Another SSA rule says that, if someone under age 65 is found to be totally disabled and eligible for SSDI benefits, then two years after the SSDI benefit eligibility date, that person is eligible to receive Medicare benefits. Thus, the letter stated that I qualify for Medicare effective October 1, 2014, because that is two years and five months after my bladder cancer was confirmed to have metastasized outside of my bladder and into my lymphatic system. (May 2012 + 5 months + 2 years = October 2014.) I don't pretend to understand or agree with the policies behind these time periods, but am just relating how the rules apply to me.
I thumbed through the enclosed Medicare pamphlet and looked at the online handbook, and learned about Medicare Part A, Part B, Part C, and Part D. Part A is "free" (no extra cost to me personally); but there are costs associated with the rest of the coverage. Fighting to keep my eyes from glazing over, I read various warnings about penalties if I didn't properly enroll. I looked into the exceptions, and learned that as long as I have private insurance provided by an employer, I probably didn't have to pay for parts B-D. That continues to be the case with me: as a partner at my law firm, I still receive comprehensive health insurance for me and my family. As an equity partner, I am considered a co-owner, so there is no employer contribution towards my health insurance. In other words, I get to pay 100% of the actual cost of my health insurance for me and my family, which is over $22,000 per year.
I've confirmed with the benefits coordinator at my law firm that my ongoing participation with my law firm's health insurance means that I do not need to pay for Parts B or D of Medicare. If I was to leave my firm's private insurance plan, and go on Medicare, I'd still need to pay for Parts B and D, or join a private insurance company under Part C, in order to have the same type of coverage that I currently have through my law firm. I also confirmed that, if and when I leave my law firm's health insurance, I would not be subjected to a Medicare penalty, as long as I promptly enroll in Medicare Parts B and D, or join a Part C plan.
The problem is, if I was to go on Medicare, I would have to find insurance for the rest of my family, probably through Obamacare. It becomes a cost/benefit analysis: How much would it cost to put together Medicare coverage for me, and alternative health insurance for my family? I assume that it would be possible to stitch together coverage for me and my family, but for now I'm not going to worry about that. Maybe I'll run the numbers at the end of the year and work through the pros and cons, but for now I am grateful that I can continue with the existing United Health Care health insurance that so far has been very good about paying for my care.
I am keenly aware that bladder cancer is the single most expensive cancer to treat on a cost-per-patient average. BCAN's press guide says, "Bladder cancer has a recurrence rate of 50-80 percent and because it requires life-long surveillance, it is the most expensive cancer to treat on a per patient basis." A 2010 article from the Canadian Urology Association Journal confirms: "As measured on the basis of cumulative per patient cost from diagnosis until death, bladder cancer is the most expensive to treat." Just yesterday I received a comment on my prior blog post stating how, for that person, "bladder cancer has been a financial disaster". The cost of my treatment for bladder cancer so far has been over $200,000; not counting the cost of my health insurance premiums, my out-of pocket cost for deductibles and co-pays has been around $2,500.
I feel fortunate for the fact that my private health insurance has covered my treatments. I am grateful for the ongoing support of my law firm. I'm also fortunate that I listened to my insurance agent more than a decade ago and purchased disability insurance with an income replacement. I eventually layered my disability coverage with four different policies. The premiums cost several hundred dollars a month, and are now paying out at 100%. Since I paid the premiums with my own post-tax dollars, the benefits are tax free, which is nice. Those payments greatly alleviate what would otherwise be a highly stressful tension of trying to push myself to work to provide for my family, while at the same time trying to prolong my life through different therapies. I am grateful that I can spend more time with my family during what is likely to be a much shorter life span than I had been anticipating before cancer.
Monday, June 9, 2014
Mets Day 789 - Reshuffling the nest
Last week Chelsea, Josh, and baby Rose moved out of our basement apartment so Chelsea could start her medical residency in Utah. The week before they moved, Jennifer and I cared for Rose 24/7 while Chelsea and Josh went on a well-earned vacation cruise. We loved having our granddaughter with us, but also realized why people in their 50's are not supposed to be new parents. The house seems much quieter with them gone.
Spencer quickly seized the opportunity presented by having the apartment vacant, and moved all his stuff downstairs. He says he's going to be buying his own food and try living on his own while finishing college. I think it's a great transition for him.
Meanwhile, this past weekend I hosted at our Lake Anna vacation home 12 people from the Potomac Pathways, the intensive outreach program where Spencer works as a peer mentor. I spent all day Saturday on driving the boat while the young adults were tubing, wake boarding, water skiing and tanning. I was sunburned and exhausted by the end of the day, and well worth it. It's a pleasure to be able to help struggling people have good, safe, wholesome fun.
The last few days of May, we hosted my older brother, his oldest daughter, and her 12 month old son, as they visited the area. I don't get that much time with my brother, as he lives over 2000 miles away, s it was nice to spend some time together. We visited a couple of the Smithsonian museums. (I'm embarrassed to say that the only time I go there is when out-of-town guests are visiting.)
When I see other people, they comment that I am looking well. My hair has grown back (although it's much curlier), I've gained weight since my last round of chemo, and I appear to have decent energy. In short, to others I don't look like their preconceived notion of how someone who has stage 4 metastatic cancer should look. I hope to keep it that way. Nevertheless, I remain cognizant of my tenuous physical condition, and am mindful and grateful for each day.
Each Monday, I receive an email from BCAN listing all of the recent questions posted on the discussion boards at inspire.com. I review the dozens of questions posted in the past week, and add my thoughts when I have something to contribute. Recently, a 39 year old woman whose father is dealing with bladder cancer asked:
I was just wondering of anyone else disagreed with the treatment choice of their doctor? If so do we have a say or do we have to go elsewhere???
I replied:
I am a strong advocate of the patient taking charge of his or her care. I read a lot of the medical literature (my background in patent law has helped my understanding), wrote down my questions in advance, frequently recorded my interactions with my doctor so I could listen to them again later, and explored all of my alternatives. I consulted with and continue to be followed by doctors from Hopkins, NIH, GW, Fox Chase, and U. Chicago. I've also consulted by phone and email with doctors from U. Mass. and M.D. Anderson. I feel fortunate to continue to be followed by some of the best BC doctors out there.
I've been Stage IV for more than 2 years, and there are no established therapy regimen -- instead, each patient is treated based upon how the cancer appears to be acting. Having such a team of doctors requires a willingness to take responsibility for your own care, because the doctors don't always agree with each other, and are quick to acknowledge their biases and limitations. For example, when my BC spread to nodes in neck, I had 3 of my doctors recommending salvage chemo, and two telling me it wouldn't do any good. I've appreciated the frank advice from each, and feel that I am managing my care with as much information as possible.
Several of my doctors have told me that I am a highly unusual patient because I read the literature, carefully explore the alternatives and risks, but am not grasping at straws or wishful thinking. My docs tell me that most patients just want their docs to announce the course of treatment and do it. As most readers of these boards know, however, depending upon the staging and co-morbidities of each patient, there are a lot of different BC treatment options from which to choose. In my opinion, it is better to know the options ahead of time instead of having later regrets.
I know the odds are against my long-term survival, have updated my will and advanced medical directive, and have found peace and joy in living one day at a time. In the meantime, I blog about my life with mets BC at http://kwbcancerblog.blogspot.com/. All are welcome to see if there is anything that might be of use to you.
Spencer quickly seized the opportunity presented by having the apartment vacant, and moved all his stuff downstairs. He says he's going to be buying his own food and try living on his own while finishing college. I think it's a great transition for him.
Meanwhile, this past weekend I hosted at our Lake Anna vacation home 12 people from the Potomac Pathways, the intensive outreach program where Spencer works as a peer mentor. I spent all day Saturday on driving the boat while the young adults were tubing, wake boarding, water skiing and tanning. I was sunburned and exhausted by the end of the day, and well worth it. It's a pleasure to be able to help struggling people have good, safe, wholesome fun.
The last few days of May, we hosted my older brother, his oldest daughter, and her 12 month old son, as they visited the area. I don't get that much time with my brother, as he lives over 2000 miles away, s it was nice to spend some time together. We visited a couple of the Smithsonian museums. (I'm embarrassed to say that the only time I go there is when out-of-town guests are visiting.)
When I see other people, they comment that I am looking well. My hair has grown back (although it's much curlier), I've gained weight since my last round of chemo, and I appear to have decent energy. In short, to others I don't look like their preconceived notion of how someone who has stage 4 metastatic cancer should look. I hope to keep it that way. Nevertheless, I remain cognizant of my tenuous physical condition, and am mindful and grateful for each day.
Each Monday, I receive an email from BCAN listing all of the recent questions posted on the discussion boards at inspire.com. I review the dozens of questions posted in the past week, and add my thoughts when I have something to contribute. Recently, a 39 year old woman whose father is dealing with bladder cancer asked:
I was just wondering of anyone else disagreed with the treatment choice of their doctor? If so do we have a say or do we have to go elsewhere???
I replied:
I am a strong advocate of the patient taking charge of his or her care. I read a lot of the medical literature (my background in patent law has helped my understanding), wrote down my questions in advance, frequently recorded my interactions with my doctor so I could listen to them again later, and explored all of my alternatives. I consulted with and continue to be followed by doctors from Hopkins, NIH, GW, Fox Chase, and U. Chicago. I've also consulted by phone and email with doctors from U. Mass. and M.D. Anderson. I feel fortunate to continue to be followed by some of the best BC doctors out there.
I've been Stage IV for more than 2 years, and there are no established therapy regimen -- instead, each patient is treated based upon how the cancer appears to be acting. Having such a team of doctors requires a willingness to take responsibility for your own care, because the doctors don't always agree with each other, and are quick to acknowledge their biases and limitations. For example, when my BC spread to nodes in neck, I had 3 of my doctors recommending salvage chemo, and two telling me it wouldn't do any good. I've appreciated the frank advice from each, and feel that I am managing my care with as much information as possible.
Several of my doctors have told me that I am a highly unusual patient because I read the literature, carefully explore the alternatives and risks, but am not grasping at straws or wishful thinking. My docs tell me that most patients just want their docs to announce the course of treatment and do it. As most readers of these boards know, however, depending upon the staging and co-morbidities of each patient, there are a lot of different BC treatment options from which to choose. In my opinion, it is better to know the options ahead of time instead of having later regrets.
I know the odds are against my long-term survival, have updated my will and advanced medical directive, and have found peace and joy in living one day at a time. In the meantime, I blog about my life with mets BC at http://kwbcancerblog.blogspot.com/. All are welcome to see if there is anything that might be of use to you.
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