I've found that the early appointments at Hopkins are far more likely to be on time or even early, as opposed to the later morning or afternoon appointments where delays are the norm. Today I left home before 7 am and rolled into the hospital in less than an hour, since there was relatively light traffic. My appointment with Dr. Hahn was routine. My rash continues to come and go; nothing serious. I mentioned how I recently had read a journal piece that he co-authored entitled "New Strategies in Bladder Cancer: A Second Coming for Immunotherapy". He said that it was a pleasure to publish a piece that had such broadly hopeful news.
While the pharmacy compounded my does of Opdivo, I got one of those 3 pound omelets that the Hopkins cafeteria is so adept at preparing. While I ate, I looked through the weekly list of new bladder cancer related postings on inspire.com, and added my comments to those questions that fell within my zone of experience. I frequently will get one-on-one follow-up questions, and am happy to share my experiences with fellow bladder cancer warriors and their caregivers. BC is one of the more complex cancers, and is the single most expensive cancer when measured on an average cost-per-patient, because the risk of recurrence is so high. It can take a while for those newly diagnosed to wrap their brains around their new reality.
My infusion was the fastest yet, probably because the nurse gave the pump 30 minutes to push the drug into my body instead of the usual hour. I was out the door by 11:30 am.
Meanwhile, I've spent much of past two weeks assessing my health insurance options for 2016. I recently have decided that I will take a disability retirement from my law firm. I have not been meaningfully practicing law for some time, and am at peace with the idea of retiring. I'm looking forward to spending the time that I have with those that I love. For the firm, my retirement helps make it slightly more nimble as it looks to merge with another firm. I've been grateful for the firm for carrying me since 2012, and in fairness I can't ask it to continue doing so, especially during this time of transition.
In considering my options for future health insurance, the most important criterion to me is that I am able to continue in my clinical trial through Johns Hopkins. I also need to ensure that my family has continual coverage. Cost is a lesser concern, although it is still relevant. I've determined at my options include 1) continuing with my firm's insurance through COBRA; 2) buying Obamacare health insurance through the health insurance marketplace; 3) activating my Medicare eligibility, and my family getting insurance through the marketplace; and 4) enrolling the whole family through GMU, where Jennifer, Spencer, and Kirsten are all enrolled. There are pros and cons to each, as well as a big difference in cost.
Option 1: By virtue of the federal COBRA law, I have the legal right to continue buying health insurance through my law firm for up to 29 months after my retirement. I get an extra 11 months since I am considered totally disabled by the federal government as a result of my mets BC. Continuing with the firm's health insurance through COBRA does not make the insurance more expensive, since as a partner I was paying full freight anyway. I was nevertheless surprised to learn how much our firm's premiums would increase in 2016, however: family coverage for UHC's Choice Plus would run more than $2500/month. While expensive, this option would ensure that I would have continuity of coverage.
The greater risk, however, is that my law firm is acquired by another firm. If that happens, then my firm likely would be legally dissolved. An employer that is no longer in business does not have an obligation to provide health insurance under COBRA. Whether that would happen with my firm is out of my control, so I feel obligated to examine my alternatives.
Option 2: Obamacare for everyone in the family. I've now determined that this is not an option, because I am eligible for Medicare, which rules out my getting Obamacare.
Option 3: Medicare for me, and Obamacare for the family. Exploring this option has forced me to do a deep dive into Medicare. After a good deal of research and a number of phone calls with both Medicare and the Social Security Administration, I have verified that I can activate Medicare outside of the normal enrollment periods, since my retirement constitutes a "special enrollment period." I activate Parts A and B of Medicare by sending to SSA a one page enrollment form, along with a certification from my law firm on Form CMS-L564. I also have been told that there are no Medicare Advantage plans in Fairfax, Virginia (my home county and state) that cover Johns Hopkins Hospital in Baltimore, Maryland. Original Medicare does cover Hopkins, however, and would ensure my continued participation in my clinical trial. Part B will cost about $120/month. I've tentatively decided that's the path that I am going to take, and put my Medicare enrollment forms in the mail this morning. I still need to figure out which prescription drug plan (Plan D) is best for me, but I can't sign up for that until I'm officially enrolled in Medicare.
As for the second half of the question -- Obamacare for the wife and kids -- I spent most of the drive up to Hopkins this morning on the phone with a representative from the health care marketplace, trying to find out the cost of health insurance in 2016 for them. The preliminary answer is that a "gold" plan (80/20 coverage) will run about $1100/month. Because my taxable income for 2016 likely will be limited to my SSDI income, my family would qualify for a $700/mo subsidy. I need to review the plan details some more, but this looks like a viable option. Their enrollment would not take effect until February 1, however, so it makes sense to pay for at least one month of COBRA coverage through my firm.
Option 4: Insurance through George Mason University. Jennifer, Spencer, and Kirsten all are students at GMU. The school offers health insurance for students. For a single student from January-August 2016, it costs about $1600. For a student and two or more dependents, it costs about $5000 for the 8 month period. The scope of coverage looks similar to the Obamacare gold plan, and the net cost is slightly higher. But because Jennifer and Spencer are graduating in 2016, they would not be able to continue getting GMU insurance past August. So there is little reason to go down that pathway for such a short duration.
In sum, it looks like I'll exercise my COBRA rights for January 2016, then go with option 3 thereafter. Hopefully it all will work out.
After I finished at Hopkins, I went to my dentist for a crown and another filling. After spending the past couple of weeks studying my health insurance options, it actually felt good to numb my skull.
Tuesday, December 29, 2015
Tuesday, December 15, 2015
CR 175: 21st infusion; health insurance questions
To work around the holidays, my biweekly Thursday appointments at Hopkins were moved to Tuesday (Dr. Hahn's clinic days are Tuesday and Thursday). I drove up to Baltimore at the crack of dawn for an 8:30 am vitals check, then met with the good doctor. I noted how the itching on the back of my neck and scalp had gotten more intense in the past couple of weeks, approaching the level of mosquito bites. He suggested topical ointments if it became unbearable, but I'm not yet at that point. I'm assuming the itching will come and go as it has before. He said to let him know if it got much worse, because that could be a sign of an autoimmune reaction. Other than that, everything was normal.
While the pharmacy was compounding my dose of Opdivo, I had breakfast in the Hopkins cafe. Their custom-made omelets are a good way to pass an hour. The infusion was routine. I'm glad my port is working properly.
After I was finished at Hopkins, I met with my insurance agent to review my life and disability coverage, as well as discuss options regarding health insurance in 2016. It looks like my law firm soon will be merging with a larger firm, and partners are bring asked to make a multi-year commitment to the new enterprise. I have been on full disability since late 2012 and barely working since then, and do not believe it would be fair to the new firm for me to make such a commitment going forward. As a result, I anticipate taking a formal disability retirement from my firm's partnership. I am grateful to my law partners for how they have supported me for the past few years.
The question is, where do I get my health insurance for 2016. As a law firm partner, I pay 100% of the cost of my family health insurance, which for 2015 is about $28,000. My currently law firm likely will be dissolved, and if that happens, there will be no entity that holds the obligation to provide health insurance through COBRA. I'm currently assessing whether the new firm will assume the COBRA obligations of my current firm, and if so, exercising that option likely will be the most seamless option. But it will also be the most expensive option.
Other options include my exercising my Medicare insurance. I have been Medicare eligible since October 2014, but have not exercised it since I was technically still employed and receiving insurance through my law firm. If I trigger that option, then I'd have to start paying my Part B costs, plus figure out whether I'd doing a Medicare Advantage plan, and if so, which one. That's a pain. Plus, Medicare covers just the individual; it would not provide insurance for the rest of my family.
For them, I could go into the health insurance marketplace set up by Obamacare and see what coverage I could get. I have been told that it's illegal for anyone to sell me insurance in the marketplace if I am Medicare eligible. But I've also been told that there is an exception to that rule, so I could participate in the marketplace, but I would not be eligible for any subsidies.
Assessing all of these health insurance options gives me a headache. But at least I've got options, the tools to assess them, and the means to pay for the insurance. For that I am grateful.
After meeting with my insurance agent, I went to my dentist. Every time I go to a dentist I think of the scene in Marathon Man ("Is it safe?") I've gone to the dentist only once since I was diagnosed in 2011, thinking that I'd probably die before I needed a root canal. But now that there is a chance that I might live with metastatic bladder cancer for longer than 5 years, and since I don't know what my dental insurance will be in 2016, I thought I might as well bite the bullet (so to speak) and find out why my rear molars occasionally hurt. It turns out that three of my 4 rear molars have large fillings that are cracked, chipped, and with some decay underneath. Two will need new fillings, and one will need a crown. I'll get one side done next week, and the other the week after. Having dental work done is a pretty tangible suggestion that I'm thinking I might live a little longer after all. I think it will be worth it.
While the pharmacy was compounding my dose of Opdivo, I had breakfast in the Hopkins cafe. Their custom-made omelets are a good way to pass an hour. The infusion was routine. I'm glad my port is working properly.
After I was finished at Hopkins, I met with my insurance agent to review my life and disability coverage, as well as discuss options regarding health insurance in 2016. It looks like my law firm soon will be merging with a larger firm, and partners are bring asked to make a multi-year commitment to the new enterprise. I have been on full disability since late 2012 and barely working since then, and do not believe it would be fair to the new firm for me to make such a commitment going forward. As a result, I anticipate taking a formal disability retirement from my firm's partnership. I am grateful to my law partners for how they have supported me for the past few years.
The question is, where do I get my health insurance for 2016. As a law firm partner, I pay 100% of the cost of my family health insurance, which for 2015 is about $28,000. My currently law firm likely will be dissolved, and if that happens, there will be no entity that holds the obligation to provide health insurance through COBRA. I'm currently assessing whether the new firm will assume the COBRA obligations of my current firm, and if so, exercising that option likely will be the most seamless option. But it will also be the most expensive option.
Other options include my exercising my Medicare insurance. I have been Medicare eligible since October 2014, but have not exercised it since I was technically still employed and receiving insurance through my law firm. If I trigger that option, then I'd have to start paying my Part B costs, plus figure out whether I'd doing a Medicare Advantage plan, and if so, which one. That's a pain. Plus, Medicare covers just the individual; it would not provide insurance for the rest of my family.
For them, I could go into the health insurance marketplace set up by Obamacare and see what coverage I could get. I have been told that it's illegal for anyone to sell me insurance in the marketplace if I am Medicare eligible. But I've also been told that there is an exception to that rule, so I could participate in the marketplace, but I would not be eligible for any subsidies.
Assessing all of these health insurance options gives me a headache. But at least I've got options, the tools to assess them, and the means to pay for the insurance. For that I am grateful.
After meeting with my insurance agent, I went to my dentist. Every time I go to a dentist I think of the scene in Marathon Man ("Is it safe?") I've gone to the dentist only once since I was diagnosed in 2011, thinking that I'd probably die before I needed a root canal. But now that there is a chance that I might live with metastatic bladder cancer for longer than 5 years, and since I don't know what my dental insurance will be in 2016, I thought I might as well bite the bullet (so to speak) and find out why my rear molars occasionally hurt. It turns out that three of my 4 rear molars have large fillings that are cracked, chipped, and with some decay underneath. Two will need new fillings, and one will need a crown. I'll get one side done next week, and the other the week after. Having dental work done is a pretty tangible suggestion that I'm thinking I might live a little longer after all. I think it will be worth it.
Thursday, December 3, 2015
CR 163: Infusion 20, Thanks giving
Another two weeks, another infusion. Since my appointment with Dr. Hahn was at 9 am, I left my home at 7 am, not knowing what rush-hour traffic would be like on the dreaded Washington Beltway. Today it was fine - no delays - so I arrived at 8:15 am. To my surprise, I was immediately called in for vitals, then my checkup with Dr. Hahn. I noted that I still had occasional itching around my neck and scalp, but not as much on my legs. My rash seems to wander around from week to week. I said how I had noticed that a seborrheic keratoses on my cheek (covered by my beard) recently seemed to have grown in size. Dr. Hahn doubted that that was related to the nivolumab, but offered a referral to dermatology to check it out. Everything else was routine - my labs were fine, as usual, and we're staying the course with treatments for the foreseeable future.
I was done by 8:30 am. Since my infusion was not scheduled until 10:30 am, I went to the Hopkins cafeteria and got an omelet made to order. The chef must have thought I looked wan, because I got a 3 pound monstrosity. I managed to do my duty, and needed no lunch. My infusion once again went much faster now that I do not need to provide vitals at the start, midpoint, and end.
During my infusion, I continued to devour N. K. Jemisin's new novel, The Fifth Season. I picked it up on Monday and finished it this afternoon. It's a remarkably original work that has earned a place on a number of best book lists of 2015. I'm now forced to wait for the next two books of the trilogy. Before that, I read The Wright Brothers by David McCullough, which was outstanding. Disappointing reads of late include Grisham's Rogue Lawyer (another lazy tell don't show polemic) and Ernest Cline's Armada (as unoriginal and boring as his Ready Player One was innovative and satisfying). I'm now reading The Only Ones by Carola Dibbell. Other books on my nightstand include Aurora by Kim Stanley Robinson and Geraldine Brooks' March.
On Thanksgiving day, my sons and I played in our church congregation's annual Turkey Bowl: two simultaneous games of touch football, one for young kids under age 12 or so, and the other for the older teens and adults. I think I was the oldest player on the field, and certainly was the one who ran the least. I mostly stood on the line of scrimmage, tried to block the occasional blitzer, and watch my boys and many friends have a good time. I thought of how at the Turkey Bowl four years earlier, I had just learned that I had bladder cancer. At the end of that game I walked with one of my good friends who was then serving as the leader of our lay ministry and told him about my diagnosis. His stunned reaction gave me the first insight that my journey might affect a circle much larger than my family. Over the past four years, I have gained a far deeper understanding of joy and sorrow than I previously could imagine.
The Sunday prior to this Thanksgiving, I was asked to give the opening prayer in our congregation's principal meeting. I concentrated on giving thanks for all the good in our lives. No requests, no favors, just gratitude. I spoke from the heart and recall very little of what I said. A number of people commented to me that they appreciated my focus on thanks giving. One member of the congregation later emailed:
I was done by 8:30 am. Since my infusion was not scheduled until 10:30 am, I went to the Hopkins cafeteria and got an omelet made to order. The chef must have thought I looked wan, because I got a 3 pound monstrosity. I managed to do my duty, and needed no lunch. My infusion once again went much faster now that I do not need to provide vitals at the start, midpoint, and end.
During my infusion, I continued to devour N. K. Jemisin's new novel, The Fifth Season. I picked it up on Monday and finished it this afternoon. It's a remarkably original work that has earned a place on a number of best book lists of 2015. I'm now forced to wait for the next two books of the trilogy. Before that, I read The Wright Brothers by David McCullough, which was outstanding. Disappointing reads of late include Grisham's Rogue Lawyer (another lazy tell don't show polemic) and Ernest Cline's Armada (as unoriginal and boring as his Ready Player One was innovative and satisfying). I'm now reading The Only Ones by Carola Dibbell. Other books on my nightstand include Aurora by Kim Stanley Robinson and Geraldine Brooks' March.
On Thanksgiving day, my sons and I played in our church congregation's annual Turkey Bowl: two simultaneous games of touch football, one for young kids under age 12 or so, and the other for the older teens and adults. I think I was the oldest player on the field, and certainly was the one who ran the least. I mostly stood on the line of scrimmage, tried to block the occasional blitzer, and watch my boys and many friends have a good time. I thought of how at the Turkey Bowl four years earlier, I had just learned that I had bladder cancer. At the end of that game I walked with one of my good friends who was then serving as the leader of our lay ministry and told him about my diagnosis. His stunned reaction gave me the first insight that my journey might affect a circle much larger than my family. Over the past four years, I have gained a far deeper understanding of joy and sorrow than I previously could imagine.
The Sunday prior to this Thanksgiving, I was asked to give the opening prayer in our congregation's principal meeting. I concentrated on giving thanks for all the good in our lives. No requests, no favors, just gratitude. I spoke from the heart and recall very little of what I said. A number of people commented to me that they appreciated my focus on thanks giving. One member of the congregation later emailed:
I didn't want this day to pass by without thanking you for being you. Your prayer today in Sacrament Meeting touched my heart deeply, and opened my soul to receive the words that were spoken in such a manner that I consider today to be a watershed moment in my life, and a day that I will reflect upon for the rest of my life. You and your family have been such a great influence in my life, and have given me joy, inspiration, a lot of love, and a lot of laughter. Thank you, dear friend, for giving me insight and great hope. Have a wonderful Thanksgiving.
I have found that a life filled with gratitude is a life filled with joy. And a life of joy is a life that brings us nearer to God.
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