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.
Thursday, January 28, 2016
Sunday, January 24, 2016
Tuesday, January 12, 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.
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.
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