CR 225: Clear scans, except for the mucus

After last Thursday's infusion, I started feeling fatigued. By Sunday I felt like I had just gone through dose dense MVAC chemo, which is saying something. It hurt to move, to walk, or do anything. I also started coughing up amazing amounts of mucus. By Monday I was running a fever of 101 degrees. Those combination of symptoms were highly uncommon for me - most colds or flus did not incapacitate me like that. Aware that Dr. Hahn had warned me to let him know if I developed a fever after an infusion, I emailed him and the clinical trial nurse:

Following my nivolumab infusion on Thursday, January 28, I have started running a fever (101 degrees), headaches, am constantly fatigued, have muscle and joint pain. In addition, the productive cough that I thought was resolved has returned with a vengeance. I've been trying to manage this with over-the counter remedies (ibuprofen, Mucinex, a decongestant), but the fever is increasing and symptoms are getting worse.

I am scheduled for a CT scan on Wednesday, Feb. 3 at 10:50 am. I know that is not your regular clinic day. Would it be possible to be evaluated on Wednesday, or do you want to work me in tomorrow?

I also called the Hopkins triage nurse, who asked some additional questions and consulted with my clinical trial nurse. I was advised to go to Hopkins the next day and be evaluated by their urgent care team in the oncology department. They also moved my CT scan from Wednesday.

So Tuesday morning I blearily left for Baltimore at 6:30 am, grateful it was raining and not snowing. I went to the CT department and was directed to the triage group, who after some confusion sent me back to CT, where my port was accessed and I had my scans. I then went back to triage, where I was hooked up to a saline IV and had an impressive amount of blood drawn from both my port and my arm (the latter to ensure that my port was not the source of the infection). I also gave a urine sample and had a long piece of plastic shoved into my sinuses for a mucus sample (that was unpleasant!).

Soon the results began to be posted. The good news first: The CT scans showed no new metastases or other evidence of the cancer growing or spreading. Yay for nivolumab! The chest scan noted "new tree in bud nodularity in the posterior  aspect of the left lower lobe, likely infectious/inflammatory etiology  such as bronchiolitis". The neck scan found "fluid accumulation in the maxillary sinuses, suggesting acute sinusitis". And the nasal swab tested positive for "Influenza virus type A RNA". The PA told me that I probably picked up the flu during my visit to Hopkins last Thursday. Lucky me. But at least it wasn't an adverse reaction to the Opdivo. There are a couple of reported cases of adverse drug events to nivolumab causing severe lung damage and even death. They are rare, but enough of a concern that the clinical trial doctors keep close watch on any possible such effects. I'm glad that it's just the flu, and that I can continue on with the trial. 

I was sent home with prescriptions for Augmentin and Tamiflu. When I went to CVS to pick them up, I had my first shock as a Medicare patient: because I had not yet signed up for a prescription drug plan, I was charged full price ($50 for the Augmentin, $147 for Tamiflu). Note to self: find a Medicare Advantage plan that lets me continue in the clinical trial at Hopkins but gives me some drug coverage.

After dosing myself with those drugs and a liberal amount of Nyquil, I actually got a decent night's sleep and am feeling somewhat better today. I am grateful for the continued excellent health care I am receiving, and thankful for each day I can spend with my loved ones. I am keenly aware of how narrow the precipice is between life and death, and take nothing for granted.

CR 219: 24th Opdivo infusion

The metro area is still recovering from the recent storm, nicknamed Snowzilla. It was the most snow we've received in a single storm in the 30+ years we've lived in the DC area. The regional governments have not spent their tax dollars buying snow removal equipment to handle such freak storms, and rightfully so, since 99.9% of the time it would be sitting unused. But the .1% of the time when the equipment is needed, it means that the digout takes much longer. Our nearby streets did not see plows until 4 days after the first snowflakes fell. Patience helps.

A week after the storm started, the roads are not fully cleared. The shoulders and right lanes of multi-lane streets have snow banks. Traffic is congested by the reduced number of lanes.  My drive up to Hopkins took turned into a crawl on the Baltimore streets, taking nearly an extra hour.

The Weinberg Cancer Center at Hopkins was filled to capacity, since so many patients were unable to come in during the storm. I was expecting delays, so I read the newspaper and The Nightengale while waiting for my port access, lab work and appointment with Dr. Hahn. I first met with one of his fellows. Referring to the cold that I received from the Social Security office on January 8, I asked whether the fact that it took nearly three weeks for the chest congestion to resolve was related to the nivolumab. The fellow acknowledged that Opdivo had an increased risk on pneumonitis, but was not aware of evidence that the drug slowed the recovery from regular viral infections. Fortunately, the congestion had cleared in the past couple of days.

Dr. Hahn eventually entered, apologizing for his delay. He had been on a conference call seeking preauthorization for another patient to commence immunotherapy. Insurance companies are only slowly agreeing to pay for drugs like Opdivo, especially if it for an off-label use. Dr. Hahn finished examining me, then sent me on my way to get my infusion.

Because the lab was taking its time compounding my drug, I got lunch at the Hopkins cafeteria. The lines were snaking out the door. Listening to three medical students and a resident talk in front of me, I realized it was because no one had been able to go grocery shopping for a week, so all the employees were buying food at the cafeteria. The entree at the steam tables was mystery meat covered in brown gravy (shades of Margaret Atwood's Maddaddam?) so I went to Subway.

When I was called in for my infusion, my nurse could not get a blood  return from my port. Nothing seemed to work -- turning my head, coughing, raising my arms, standing up, twisting, etc. It must have looked strange as I was standing in front of a short nurse, twisting my torso and raising my arms up and down as she was clutching at a syringe hooked to a tube coming out of my chest, jerking the plunger back and forth trying to open up my port like a clogged toilet. When my port was accessed that morning, it readily gave a blood return for my labs. Eventually, my nurse summoned her supervisor, who had me fully recline and immediately got a return. She joked that it was her Transylvannian heritage that let her get blood so easily.

The infusion was routine: 3 mg/kg of nivolumab, courtesy of Bristol-Myers Squibb, pumped into my body in 60 minutes. I'm so glad I can continue to get this drug, and so glad it doesn't have side effects like chemotherapy. I heard my nurse talking with the patient next to me, who was there for his first chemotherapy. As she explained all of the possible side effects, I thought "hang in there, buddy." Been there, done that, lost the hair. Hope it works.

CR 215: Snowzilla

My front sidewalk, January 24, 2016.

CR 203: 23rd infusion; now on Medicare

On December 31, 2015, I formally took a disability retirement from my law firm. I am grateful for the ongoing support provided by my colleagues at work. From the moment I was diagnosed in November 2011 until now, my firm has been wholly supportive of my ongoing cancer battle. I decided that it made sense to formally retire because my firm is actively exploring combinations with other law firms, and I was not prepared to make a long-term commitment to meaningfully return to my legal practice as part of any such combination. For me, there is far too much uncertainty on how long my current remission may last. Plus, there is little economic motivation to return to work in light of the ongoing payments pursuant to my own occupation disability insurance policies that I bought in the early 2000s. My legal practice was enjoyable while I was doing it, but now that I've turned the page, I don't miss it.

As I've references in my prior blog entries, with my retirement comes questions of ongoing health insurance. After extensive analysis of my options, I decided that I would activate my Medicare coverage. I've been eligible to enroll in Medicare since October 2014, which was two years and five months after my metastatic bladder cancer was confirmed. Under federal law, that fact classified me as totally disabled. I was told by SSA that activating my Medicare Part B required me to fill out a form, and my firm's HR department filling out another form, and sending them in where they would be promptly processed. I did that on December 29. Ten days later, SSA still had not entered the forms into their system. After an interminable wait on hold, an SSA agent told my by phone that I should go to my local SSA office and insist that I watch while my forms were entered into the system. So last Friday I did just that. Four hours later I walked out with proof that I was on Parts A and B of original Medicare. As a bonus, I was also given a cold.

For my family, I've decided to enroll them in Obamacare. The deadline for January 1 enrollment was December 15, so we missed that, but we'll make the January 15 deadline for February 1 enrollment. To cover my family in the meantime, I exercised my COBRA rights and paid $2745 (!) for one month of family health and dental coverage. Obamacare will be much less expensive -- a net cost of somewhere around $550/month for Jennifer and the kids.

With those decisions made, this morning I went up to Hopkins for my 23rd infusion of Opdivo. I first met with the JHUH billing department to get everything transferred over to Medicare. The main reason that I'm sticking with original Medicare is because it will cover my participation in the trial at Hopkins. As near as I can tell, none of the Medicare Advantage plans located in Fairfax County will do that. And no one could tell me how much Hopkins would charge me for the portions of the trial that are not covered by Bristol Myers Squibb. Although I was promised that the transition would be seamless, I am skeptical. It's reassuring that I'll have UHC as a secondary insurer for this and my 24th infusion at the end of the month.

Dr. Hahn looked me over, noted my congestion, and took extra time listening to my lungs. He warned me to notify him if I started running a fever or if my cold symptoms were out of the ordinary. I sometimes take for granted my lack of side effects, and that was a good reminder that I am taking an experimental drug that still has many unknowns. Aside from that, the infusion was routine.

While at Hopkins, I met another mets patient who had been following my blog and was starting a pembrolizamab trial at Hopkins. He lives on the Gulf Coast of Florida, flew up this morning for his first infusion, and flew back this evening. He'll do that every three weeks for the duration of his trial. I hope he does well.

The best part of the day came at the end, however: After I as done with my infusion, I went to BWI to meet Jennifer, who was flying back from Utah along with out oldest grandchild, Rose! It's her first solo trip to visit us, and it was wonderful to see her again. She's two and a half, and when we got home she snuggled right into my lap to read some books. There are very few things in life that are better than reading to your grandchildren. I cherish those moments. I am so grateful to God that my days have been prolonged so that I might have ongoing joy and rejoicing in my posterity.

CR 189: 22nd infusion; insurance for 2016

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.    

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.

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 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.