Consultations and infusion 55

For the past couple of weeks, my medical team at Kaiser Permanente in Virginia, Johns Hopkins in Baltimore, and NIH in Bethesda, have been reviewing my recent PET scan, comparing it to my other scans, and considering my therapeutic options. I exchanged several emails with my Kaiser oncologist, Dr. Iva Ferrera. She wrote that she was not convinced that the lung tumor was gone. Just because the Colorado radiologist had not seen it doesn’t mean it’s not there. She noted that a PET scan does not have contrast (unlike a CT scan), so it can be harder to make out smaller tumors. She thinks that no action is needed on the lung tumor, however, since it’s not of sufficient size to hit the panic button. She thought that I should wait and see if continued scans show if it continues to grow.

With regard to the supraclavicular node in my neck that is once again growing and showing active metastatic activity, Dr. Ferrera thought that I could also wait and see if that continued to grow. It’s not causing any problems right now, and it has a history of growing and shrinking. Alternatively, she thought that it could be treated with cyberknife radiation, since it is the only tumor of significance currently showing up on my PET scan. She also thought that there was the possibility that the lung tumor could also be zapped with Cyberknife radiation if it continues to grow. Before making a decision, she wanted to see what NIH said.

On Monday, December 10, I met with Dr. Andrea Apolo and her team at NIH’s NCI in Bethesda Maryland. She’s followed my case since April 2012, and I think that she is one of the most knowledgeable doctors in the world regarding current and cutting-edge treatments for metastatic bladder cancer. After I was screed by one of her fellows, she came in with her team to review my options. She said that she’d recently talked with Dr. Noah Hahn about my case, and that she said with a smile that she was not very impressed by my tumors. I told her that I was happy to hear that. (You do not want to have an oncologist tell you she is impressed by your tumors.) She didn’t think that I needed to enter a new clinical trial right now (yay!). She asked that I send her a copy of every scan so she could continue to follow my case, and we’d keep in touch by phone or email. If and when it’s time to start a new clinical trial – most likely a combination drug therapy trial – we’ll sort out the best drugs and which location at that time.

For now, Dr. Apolo recommended that I continue with my Opdivo treatments and taking a wait and see approach, with regular CT scans. I told her about Dr. Ferrera’s idea of having cyberknife radiation, and Dr. Apolo said that she was not opposed to the idea. Usually she would not recommend zapping individual metastatic tumors, but in view of my young age and otherwise decent health, radiation might be an option. She thought that it need not be immediate, however – I could do it in January or after my next CT. I thanked her as we hugged at the end of my appointment. I am so fortunate to have such a skilled practitioner as part of my team.

On Wednesday, I went into Kaiser’s Tysons Corner facility for nivolumab infusion #55. As usual, it was unremarkable: IV placement, 30 minute drug push, and done. It likely will be the last time that I’ll get an infusion in Virginia, since effective next year I’ll be changing to a Utah-based insurance policy. Notwithstanding my recent adventure with Kaiser in Denver, I’ve come to appreciate the care I’ve received of the past three years from Kaiser. When I first enrolled in Kaiser’s Medicare Advantage program in 2016 after formally retiring from my law firm, Kaiser noted that I was in a clinical trial with Johns Hopkins and also enrolled me in the Kaiser Family Foundation medical assistance program, which covered all of my deductibles and copays. So for the past three years I have not paid a penny for any of my treatments – Opdivo, or scans, or other medications. And the care that I have received from my Kaiser oncologist (Dr. Ferrera) and my primary care provider (Dr. SummerAbdel-Megeed) has been as good as any doctor I’ve seen.    

But alas, Kaiser is not in Utah, where I’m now spending most of my time. Shopping for a new Medicare Advantage policy was a bit of a pain. I first had to find a policy that covered the oncologist that I intend to see (Dr. Ben Maugham). Then I needed to find out who much I’d be paying for coverage, which is the sum of my monthly cost, the copays, the deductibles, coinsurance, and whether Opdivo was covered. As near as I could tell, Opdivo is not on any of the insurance company formulary lists of approved drugs. To find out whether it is covered or not, I’ve had to call each company, educate the rep about the drug, and learn the coverage limits. I’ve learned that Opdivo is not considered a Medicare Part D drug, because it’s given by infusion in a doctor’s office. That makes it a Medicare Part B procedure. The drug component of the procedure is subject to an 80/20 split, with me paying the 20%, up to the amount of the annual out-of-pocket maximum. The policy that I finally settled on has an OOP max of $4900, which I’ll probably hit in the first month or two of 2019.

This morning I met with Dr. Ferrera. I’d already sent her an email updating her with Dr. Apolo’s thoughts. We considered setting up the cyberknife appointment for next week, but I decided to wait until after the holidays and will follow up with my new doctors in Utah next year. I thanked her for her outstanding care and coordination with my other doctors. We hugged and I told her I’d give her a shout out in my blog. Everybody now: Yay for Dr. Ferrera!

Update on Jennifer

From time to time I've mentioned my wife's recent struggle with cognitive difficulties. From her sudden onset of catatonia 14 months ago, she's gone through seven extended hospitalizations, evaluations by more than 20 doctors at 6 different hospitals, and more than 20 different drug regimens. No one has been able to agree on a diagnosis, and none of the drugs have helped. We transferred her to a memory care facility this summer, since she needed more care and support than I could provide at home.
 

Jennifer has been in the hospital for more than two months. She had become increasingly unstable while living at the memory care facility, and her doctor wanted to adjust her medications while under observation. She also had another round of scans and tests as a team of doctors tried to arrive at a diagnosis. The only thing that everyone agrees upon is catatonia. But everything else about her condition is atypical and defies a diagnosis of dementia or depression or any other label. Her doctors now theorize that in September or early October 2017 she had some kind of infection – perhaps a virus of some sort – that caused some permanent changes in her brain chemistry and electrical structure. For the past two months her doctors have tried multiple drug therapies, none of which have worked. The doctors now believe that her recovery is unlikely, and that she likely will require assistance for the rest of her life.

On Sunday I had a conference call with my four children to discuss their mom’s poor prognosis, and make some decisions about her future care. We arrived at a consensus to look for ways that Jennifer could be discharged from the hospital, receive the appropriate level of care, and be given the opportunities to find joy in life however she can. Over the past couple of days I’ve spoken with multiple people to determine if we can arrange 24/7 one-to-one support by aides and techs at an appropriate facility. It’s been a dizzying education on the limits and gaps in our health care system in caring for people with cognitive difficulties. I'm applying all of the lessons I've learned from my cancer journey to advocate on my wife's behalf. Please keep Jennifer in your prayers – she (and I) need all the help we can get.

An unexpected PET scan

After my CT scan in October that showed a metastatic tumor in the upper right lobe of my lung, I scheduled a follow-up PET scan for 8 weeks later, to coincide with my previously scheduled Opdivo infusion in mid-December. The Friday before Thanksgiving, however, I spoke with Dr. Andrea Apolo, the head of bladder cancer research at the National Institute of Health’s National Cancer Center. She has been following my case for years and had just reviewed my October CT scan. She suggested that I should be able to get a PET scan after only six weeks. I decided to ask my Kaiser oncologist in Virginia if I could get the scan at a Kaiser facility in Denver, since I was going to be in Utah during that week (and Kaiser isn't in Utah). It took a few phone calls and emails to pull it off, but everyone cooperated to schedule a PET for me on Wednesday November 28 at a Kaiser facility in Lonetree, south of Denver.  A roundtrip Southwest flight for the day was less than $100 (Frontier was $20 cheaper, but I refuse to fly that lousy airline if there is any other option.)

Yesterday, my daughter Kirsten met me at the Denver airport, and a we were able to spend the day together. She and her boyfriend had recently decided to tie the knot, and yesterday they asked me to officiate. I said I’d be honored to do so, as long as I was still alive. The wedding is planned for next September, but 10 months is on the long end of a worst-case scenario of my metastatic cancer going full-tilt and nothing succeeding in slowing it down. It may seem strange to those who have not lived with an uncurable metastatic cancer, but my family is comfortable with talking candidly about the elephant in the room. Plus, it makes for great opportunities for some dark humor.

We arrived at the Kaiser Lonetree facility, checked in and were sent upstairs for a glucose test. But when my number was called, the tech told me that my scan had been cancelled because the machine was broken. But it was working when they checked me in, I said. Not her problem. Go away. Next! I went back downstairs where the radiology receptionist confirmed that the machine had once again quit working – apparently it had been on the fritz for several days. A technician would come out and discover someone had tripped over the cord and unplugged it or tried to reheat a leftover turkey sandwich or put another quarter in the slot or whatever. Could they reschedule me for another day? No, I flew here specifically for this scan and was flying out tonight. Not her problem. Go away. Next! But I didn’t go away. I asked her call the other Kaiser facilities in Denver that had PET machines and see if they could work me in. Instead she gave me the number of her boss, then got up and walked away.

After peeling my jaw off the floor, I called the boss and got a generic voice mail. Halfway through my blunt message it dawned on me that this was probably not an actual Kaiser employee, but likely an ex-boyfriend of the receptionist. I ended the message, shoulder surfed into the locked offices behind the receptionist, walked into the scheduling office, sat down and explained my situation to the surprised employee. I asked her to call the other Kaiser facilities and get me worked into their schedule for today. She said she's try and I said I'd sit and wait. Downtown Denver couldn’t do it, but the Lafayette office north of Denver could get me in at 5 pm. Great, I said. But the Lafayette office said that I’d have to be there by 4 to get the FDG contrast, and there wasn’t time since it was an hour’s drive and it was already past 3. Give me the contrast here I said. She said she couldn’t do that. Call your pharmacy and ask I said. She called the pharmacy. Yes, they would do it. I asked her to call the lab and authorize the glucose test, and that I expected the contrast to be ready when I got back. And it was. Sometimes you just need to be persistent in your self-advocacy.

Kirsten drove me up to Lafayette on the north end of Denver, and I was immediately walked back to the scanner, laid on the table, and nuked. Kirsten and I chatted about wedding planning as the tech burned two disks with the scan images, then were on our way. Since I hadn’t eaten at all, Kirsten took me to Brothers barbecue where we each ordered the two meat platters. There is something about eating good barbecue with your adult kid that warms the heart. Or maybe it was the spicy sauce. But having my daughter accompany me for the day made the madness worthwhile. I flew back to SLC and arrived in Huntsville at 1 am this morning.

After awaking, I emailed my Kaiser oncologist in Virginia about my having the scan, and asked her to email me the reading once she received it. I also mailed to Dr. Apolo one of the disks of the scan. I’ve scheduled a meeting with her for December 10.

This evening, I received a response from my Kaiser doctor. The scan results were unexpected. The radiologist did not fund any tumor in my lungs (“No developing pulmonary nodule”). However, the radiologist did not compare this scan to the October scan that showed the lung tumor, but instead compared it to my scan in July of this year that showed no pulmonary tumor, but suggested I’d had a complete response from my outbreak of mets in April. So I’m skeptical. I’ve asked my Virginia-based Kaiser oncologist to request a reinterpretation, comparing it to the October scan.

The Colorado radiologist did find two other suspicious tumors, however: First, a “solitary enlarged prevascular mediastinal lymph node image 58 measures 1.3 cm with SUV max of 5.1 compared with 1 cm with SUV max of 3.2 which is suspicious for a metastasis.” Something is going on there. Second, "12 mm transverse diameter hypoattenuation right lobe of the thyroid demonstrates low-level metabolic activity with SUV max of 2.4, unchanged.” My thyroid has been previously examined and found to be benign, so I’m not too worried about that.

I’ve emailed three of the clinical oncologists who are following my case (Dr. Ferrera with Kaiser in Northern Virginia, Dr. Apolo with NIH NCI in Bethesda, and Dr. Hahn with Johns Hopkins in Baltimore), and asked for their thoughts. The suggestion that my lung tumor has simply disappeared seems too remarkable to believe, so I’m asking for verification. I’d assumed that I’d be entering a clinical trial in January, but if the scan reading is accurate, then perhaps I can postpone that and instead look forward to dancing with my daughter at her wedding.

Infusion 54 and thought avoidance

I’ve spent the past few weeks mostly not thinking about the metastatic tumor in the upper right lobe of my lung, with tendrils creeping out like kudzu, sucking the life force from the adjoining cells and feeding the malignancy. I have tried to ignore the knowledge that this new carcinoma likely lacks the PD-1/PD-L1 connection that has allowed my monthly of infusions nivolumab to enable the T cells in my immune system to strip the camouflage from, then consume, the tumors in my lymphatic system. I do not dwell on the likelihood that each day thousands of new cancer cells are colonizing in my bronchial tubes. I disregard the data that suggests the average life span of a person who has metastatic solid tumors in their organs is less than a year. I try to not think about these unpleasant facts.

Instead, I try to live each day as joyfully as I can. I visit Jennifer once or twice a day in the hospital, where for the past month she has been receiving treatment for her cognitive issues, and am grateful that I can see her, hold her hand, and tell her that I love her. I read books with my grandchildren. I continue to churn through my book list (most recently, The Coldest Winter, by David Halberstam; The Battle of Arnhem, by David Beevor; Dereliction of Duty, by H.R. McMaster; Leonardo da Vinci, by Walter Isaacson; Lincoln at the Bardo, by George Saunders). I visit with family. I sort through the remaining residue of my life’s accumulations, curiously pleased when I can empty another box. I look forward to skiing this winter, slowly acquiring the necessary gear. A small voice sometimes whispers that I probably won’t be skiing as much as I would like, but I let that sour thought dissipate like a fart in the wind. Sometimes the preparations are more pleasing than the performance.

On Monday night I flew from Utah to DC, and slept in my almost empty house. Yesterday I went in for my labs, then went to lunch with Spencer. He’s working (and mostly living) at a residential treatment center for college-aged kids in rehab, and is getting his firefighter certifications. It’s good to see him carving out a place in the world. Kirsten received a job offer doing social work in the Denver area, and she and her boyfriend are talking about tying the knot. A few weeks ago they flow to Utah and we had a long conversation about the possibility of his joining the family. I guess my cleaning my Glock while we talked didn’t dissuade him. I wish them every happiness. I speak with Garrett each Sunday and hear about his life lessons while at Carnegie Mellon. I am grateful that my children allow me to share in their joys and sorrows.

Yesterday afternoon I met with two curators at Dumbarton Oaks, a DC museum that has a specialty in pre-Columbian artifacts. I brought with me a dozen pieces of ancient Peruvian pottery that had been given to me over two decades ago by my late stepmother. She told me that the artifacts had been discovered by her first husband in the 1950s while he was working as an engineer on a construction project in Peru. He told her that he barely had time to grab the pottery before the site was bulldozed. They have been sitting in my garage ever since. 

I first tried contacting the Peruvian embassy, but no one seemed interested. I tried the Smithsonian, but was told they had strict conditions and likely would not accept them. I found similar pieces that were being offered by dealers for anywhere from $300 over $1000 each. One dealer offered me $3000 for the lot based solely on my photos. I preferred that the items be professional curated, and eventually I was referred to the curators at Dumbarton Oaks. They carefully unwrapped the pieces, documenting each step. They could not promise to take them into their collection, but said that if they could not, they would refer me to other museums that might be interested. I’m not interested in the money; rather, I’d like to see them displayed. I’m just trying to do the right thing.

This morning I met with the handyman who has been working on my Great Falls house to review his never-ending list of projects. I also met with my realtor, so we could re-list the house. I’m more than ready to have it sold.

This afternoon I had my 54^th Opdivo infusion. As usual, it was routine. I spoke with the nurse about the new mets, and how I likely will be entering a new clinical trial in January. Those decisions will be driven by the results of my PET scan in 4 weeks. I try to not think about it, and instead think about snow.

Infusion 53, another CT, and maybe lung mets

I flew back to the DC area on October 11 and stayed overnight in my increasingly empty house. On Friday morning Spencer and I drove up to Pittsburgh to visit Garrett. It was Carnegie Mellon’s family weekend, so we took the chance to see how he was adjusting to college life. He was delighted to see us and get some food off campus. He’s finding his courses to be challenging and, for the first time is actually having to do rigorous homework. He said that he’s still finding the balance between meeting his school obligations and everything else.

After attending various campus events on Saturday (and playing 5 games of racquetball), we drove back to Northern Virginia. Along the way, we listened to a chapter of David Brooks’ The Road to Character of his profile of Dorothy Day, then had a freewheeling discussion about the development of values, character, free will and determinism, and what really mattered in life. It was one of those uncommon conversations with my sons that showed their searching and development into maturity, and a memory that I locked into my hippocampus.

On Sunday Garrett and I attended church, where one of his colleagues spoke about serving in the same mission as Garrett served. The opportunity to visit with members of the church where he grew up gave him both pleasure and the realization that he was in their eyes fully formed and launched into the world. From church I took him to the airport to fly back to Pittsburgh and school. I likely won’t see him until the winter break.

With my CT scan and infusion not scheduled until Wednesday, I spent Monday and Tuesday finishing packing the few things remaining in the Great Falls house. I built a large wooden crate to house an antique leaded glass cabinet from Jennifer’s great-grandmother, and another crate to transport a mica shade from our arts and crafts light. I found a couple of closets that had not been emptied, cleaned out my safe, packed my tools, and sorted more of the detritus in the garage. Habitat for Humanity picked up more large furnishings, and Salvation Army got many bags of once-valuable things that I’ll never think of again. The small pile of remaining things will be transported to Utah by Spencer later this month when he will drive our Forester and a small U Haul trailer west. Although Spencer will continue to live in the house until it sells, in theory by the end of this month there should be no more stuff in the house that 'll need to move.

Speaking of the house, in August I took it off the market to refinance the HELOC that was coming due as a balloon payment. Wells Fargo’s underwriters didn’t want to write on a house that was actively listed, so my agent pulled it out of the MLS.  In less than 30 days the bank had the new loan in place. My realtor decided to leave it off for 90 days so the days on market counter would reset to zero. Meanwhile, we’ve still had some showings and even got a lowball offer. Hopefully we’ll get some more interest once it goes on the market next month.

On Wednesday October 17, I visited with Dr. Ferrera, my Kaiser oncologist, who told me that my labs were utterly unremarkable, and that physically I seemed to be doing ok. I then went downstairs for another CT scan (#33, I think). I asked the CT tech to use a 20 gauge needle and leave it in place since I was going to have my infusion immediately after the scan. 

I walked back upstairs and was soon seated in the infusion area, laptop in place and Diet Coke by my side. I was wearing my Krispy Kreme shirt, and several patients and nurses asked me where I had the doughnuts. I pointed to my belly. Once nurse started jonesing for donuts, and talked about how she and another nurse would try as many different types of donut shops as they could get to. She recommended Texas Donuts in Centerville -- "donuts the size of Flintstone wheels!" Sounds like my kind of place. With the duration of infusion down to 30 minutes, there’s barely enough time to get settled before I’m done.

Infusion No. 53 was utterly routine, which is a good thing. Except for the lingering rash on my forehead, I’ve not had any side effects. No rash anywhere else. No coughing, breathing issues, or diarrhea. No temperature spikes. No signs of an autoimmune reaction. Dr. Ferrera and I agreed to keep going with my 4 week infusion schedule for at least the next 3 months barring anything unexpected. I’m scheduled for additional infusions with Kaiser on Nov. 14 and Dec. 12, and I’ll have one more visit with Dr. Ferrera on Dec. 13. Then with the new year I’ll transition my care to Dr. Ben Maughan at the Huntsman Cancer Center in Utah. 

I flew back to Utah on Thursday, and today (Friday) was called by a Kaiser nurse who told me that my CT showed no changes from my last scan -- no new tumor growth, minimal uptake in my primary tumor in my neck, and no other areas of concern. Dr. Ferrera wanted to do another PET scan in December to help ensure that my transition to Utah has the most complete information possible. I'll keep on going until something else happens.

October 21, 2018 update: Kaiser posted the results of my scans. The node in my neck is unchanged in size, 11 mm x 12 mm. In my lung, "there is a new pulmonary nodule with spiculation and associated parenchymal nodule in the medial upper lobe measuring 7 mm. This is moderately concerning for metastatic lesion versus and inflammatory pulmonary nodule." I did not get this information from the phone call, so I'm glad I read the scan. I've scheduled the PET for December, and we'll see what it shows.

Meanwhile I've been anticipating my first Utah winter in 34 years by buying a season pass to Snow Basin, my "home" ski area of my youth. The area is almost unrecognizable, having tripled in size since I last skied there in the early 1980s. I'm looking forward to getting reacquainted with the mountain. 

Infusion 52 amid a busy schedule

Last week I had Opdivo infusion #52 at the Kaiser Tysons Corner facility. The nurse gave me a flu shot while I was strapped into the IV pump. Woot. Nothing else to report - no side effects, no rash, no updates regarding the status of my mets. I'll have another infusion and CT in mid-October, so perhaps I'll know more then. I spend remarkably little time thinking about my cancer. It is what it is. My treatment path is established. It's a part of my life, like my tinnitus (getting louder, and I'm going deafer), or Jennifer's cognitive issues, or whatever else comes my way.

I spent the rest of the week in DC sorting through more detritus of my house, deciding what to keep and what to donate or discard. The job is more difficult without Jennifer being present. Would she want this, I think. If there is a chance that she would, I keep it. I succeeded in filling another PODS container of stuff, much of which will be distributed to family in Utah. The Virginia house is nearly empty now. Spencer is still living in the basement, and I'll be back month or so while I return for more infusions. I'm leaning toward formally switching my care (and insurance) to Utah at the start of the new year.

Meanwhile, this month we had a concrete RV pad poured next to my daughter and son-in-law's house in Huntsville. I also had a septic dump installed, as well as a 50 amp power outlet. I installed a new freeze-protected hose bib for water. Earlier this month I bought a used 2017 Jayco North Point 377 fifth wheel (used twice in 15 months by the prior owners; otherwise stored indoors). I paid $30,000 less than they paid when they bought it new, so I was pretty happy with the deal. Yesterday I picked it up, parked it on the pad, and hooked it up. Much as I love my grandkids, it will be nice to have my own place to live.

My new home

Infusion 51: reports of my CR are premature

Last week Garrett and I flew from SLC to IAD, and spent a couple of days prepping him for delivery to Carnegie Mellon. He admitted that he was a bit more nervous about starting college than he was starting a 2 year mission for the church, because his schedule was more set on his mission. I told him that, of all of his siblings, he was the best prepared and most mature to attend college. I helped him move into his dorm room, gave him a hug, and said I’d see him at graduation. Dad! he said. I replied that I hoped that I would, but who knows what will happen in 4 years. But I’d also see him at the parent weekend in October, maybe for Thanksgiving, and certainly for Winter Break. And he was launched.

Om Tuesday, August 21, went in for blood work. The first tech managed to blow two veins before I asked for another tech, who had no problems with the draw. My labs are utterly unremarkable. My ALT and AST levels, which had been creeping up earlier in the year, are back in the normal range, indicating my liver is happier.  I met with Dr. Ferreira, my Kaiser oncologist. She acknowledged that she was somewhat surprised by the radiologist’s conclusion from last month’s PET scan that there was no evidence of disease, and I’d had a complete response. She took a hard look at the scan images and detected a bit of metastatic uptake in the area of my primary tumor in my neck. She showed them to me, and she’s right – there is a bit of uptake – not a lot, but not nothing. So it looks like the report of a CR was premature. But I’m not complaining. It’s still a great result! More than 90% reduction in tumor size is wonderful. It just suggests that I should keep on taking Opdivo for a while, and continue getting scans. We scheduled another visit and a CT for October, after the parent’s weekend at Carnegie Mellon.

After visiting with Dr. Ferreira, I drove up to Baltimore for my final meeting at Johns Hopkins with Dr. Hahn under the aegis of the clinical trial. Brad Witt, the clinical trial nurse, said that I was the last Hopkins patient in the original Opdivo clinical trial who was still considered to be within the trial. The 40 or so other genitourinary mets patients at Hopkins in the trial had long since stopped taking the drug. Those still living were still being followed, but were no longer considered to be part of the trial. I’d started the trial in early 2015, taken the drug for nearly 2 years, then took a break for about 18 months before resuming treatment. Hopkins will still continue to email or call every 12 weeks or so to make sure I’m not yet on the cart (not quite dead yet), but my obligations to visit Hopkins as part of that clinical trial is done. I’m profoundly grateful to have been part of that clinical trial; to Dr. Andrea Apolo at NIH for helping to arrange for my participation; for the clinicians at Hopkins who provided my care; and to Bristol Myers Squibb for developing Opdivo and providing the drug at no cost. Opdivo has saved my life not once, but twice. It may not work for everyone, but it’s continues to work for me.

Dr. Hahn and I spoke about one of his former fellows, Dr. Ben Maughan, who now is with Huntsman Cancer Center in Utah. Dr. Hahn thinks that, once I officially relocate my care to Utah, my transitioning to Dr. Maughan’s care is a great idea. I’ve started vetting the Medicaid Advantage plan associated with the Huntsman Cancer Center.  SO far the reps have no idea whether Opdivo would be a covered drug. That’s potentially a very expensive question (up to $50,000 per year, perhaps). I won’t change my care from Kaiser until I’ve got that issue worked out. I shook Dr. Hahn’s hand and thanked him for saving my life.  Our paths are likely to continue to again at various BCAN or NIH/NCI initiatives.

Today (Wednesday), I went back to Kaiser for Opdivo infusion #51. Utterly routine. So far the side effects of the 4 week infusions of nivolumab has been no different from the two week infusions – an occasional rash here and there, and a bit looser bowels. Nothing to worry about. I appreciate having to come in only once every 4 weeks. I’m flying back to Utah this evening. Chelsea is due to delivery any day now, and I’m glad to help with the other kiddies. And it will be good to see Jennifer.

I’ve been investigating my health care options in Utah. Since the federal government considers me to be as totally and permanently disabled due to my metastatic bladder cancer, I’ve been Medicare-eligible since I was 50 years old. I started on Medicare in January 2016, after my formal retirement from my law firm left me without work-sponsored health insurance. Beginning in January 2016, I’ve been with Kaiser Permanente’s Medicare Advantage plan. I’ve become spoiled, since it’s been the best health care I’ve received in my adult life. I was already on my clinical trial through Hopkins when I joined Kaiser, and Kaiser not only agreed to continue supporting my care through Hopkins, but the plan enrolled me into their additional benefits through the Kaiser Family Foundation, which meant that I have not had to have any further expenses such as deductibles or copays. I have not had to worry about the cost of Opdivo, or my scans, or anything else.

In Utah, however, Medicare plans are not as generous. I’ve learned that because Opdivo is given by infusion, it is classified as a Medicare Part B drug that is subject to a 20% copay up to the annual plan deductible (around $5000). I’m told that non of the Utah Medicare Advantage plans cover the Part B copay. I don’t yet know how much the plans charge Medicare for my monthly 480mg dose of Opdivo, so I don’t know the amount of my copay. I’m doing further investigation, so I know my costs up front. Until I get that worked out here, I’ll fly back out here for my treatments. I’ve already bought my tickets for September and October.

Infusion 50 and a PET scan, and a complete response

It's hard to believe just 4 weeks has passed since my last infusion. Since then, Chelsea flew to DC, joined Jennifer and I as we attended a farewell reception at a friends house, then then next day turned around and flew back to SLC with Jennifer and me. We got Jennifer settled into her new specialized memory care assisted living facility, then I went with Chelsea to her house in Huntsville. The next few days were a blur of visiting Jennifer and taking her to her medical appointments, spending time with Chelsea, Josh, and the grandchildren, and readjusting to the slower rhythms of small-town life.

On July 9, Garrett completed his two-year mission for the Church of Jesus Christ of Latter-day Saints. Jennifer and I met him at the mission home in Salt Lake City, and were able to attend the departing missionary fireside. Garrett sang "Be Still My Soul" acapella, then bore his testimony. It was a moving experience. When he finished, I moved and let Garrett take my seat next to his mother.  Jennifer laid her head on his shoulder and wept tears of joy.

The next day, Spencer and Kirsten joined us in Utah. It was the first time our complete family had been together since March 2016. I had wondered whether I would live to see that day. We went boating, played games, and ate together, soaking up each other's presence. We met with a social worker who guided the kids through a discussion regarding their mom's cognitive decline, and suggestions on sorting through their emotions. We also had a family council where we discussed the estate planning steps that Jennifer and I had taken, and made some decisions regarding family finances.

After nearly a week of family time, Kirsten and Spencer drove to Denver, where Spencer embarked on hiking the Colorado Trail from Denver to Durango (blog link here). It's "only" 487 miles, so unlike his thru-hiking the Appalachian Trail last year, he'll knock this out in a month or so. I keep telling him there's medication that can help cure his hiking illness, but he declines my sage advice.  The best medicine, I've found, is sold at Krispy Kreme.

On July 20, Garrett and I flew back to DC. On Sunday, July 22, Garrett gave his missionary homecoming report to his home congregation in Great Falls. He left a boy and came home a man. I also spoke.

Yesterday, I went to Kaiser and had infusion #50. The only side effects I've noticed so far from my increased dosage of nivolumab is some scalp itching and perhaps a tendency for my gums to bleed slightly after brushing my teeth. No big deal. I'll continue to monitor any side effects.

Last night I battled traffic for nearly two hours to get to Kaiser's Capitol Hill location for a PET scan. That's a drive that takes perhaps 30 minutes when it's not rush hour. I am not going to miss DC traffic. My Kaiser oncologist agreed to my request for the test a couple of days ago, so I was added to the end of the day for the end of the day. The nurse just called and said the scan showed no evidence of metastatic disease -- a complete response! Woo hoo! Dr. Ferrera recommends keep going with Opdivo for now. Based upon this news, I'm more likely to  eventually shift my ongoing care to the Huntsman Center in Salt Lake.

Southwest cancelled our flight to SLC this afternoon, due to the heavy weather that is forecast to hit the region later today. So we're no scheduled to return to Utah on Saturday. We'll stay for a couple of weeks, then return to DC on August 14. I'll deliver Garrett to college on August 18, then have another infusion at Kaiser  the following week. I'll also be meeting with both Dr. Hahn at Hopkins and Dr. Ferrera at Kaiser, and likely will confirm my decision to transfer my care to Utah. For now, however, I'm simply relieved to be back in remission.

Church talk: We all are immigrants

Following are my prepared comments for a talk I gave in the sacrament meeting of the Great Falls Ward of the McLean Stake of the Church of Jesus Christ of Latter-day Saints on July 22, 2018:

Tuesday, July 24, is Pioneer Day in Utah. I have a confession to make. I never felt much affinity for stories of the Mormon pioneers, crossing the plains in 1847. I had no forebears who were pioneer stock, and felt kind of left out by those stories. So I’m not going to talk about the pioneers and the Days of ‘47. 

Actually, I am going to talk about the Days of ‘47. 

In the fall of 1947, Brother and Sister Mondfrans, a senior Mormon missionary couple from Ogden Utah, knocked on the door of a residence in Hilversum, Holland. The door was opened by my grandma. At the time, she was 47 years old. She was a mother of 6, with her the youngest just a year old. The Mondfrans’s stayed at that home for 6 hours, taking turns holding the baby and teaching the gospel, first to my grandmother (Oma), then to her children as they arrived home from school or work, and then to my grandpa, or Opa. 

My mom was 13 years old when she first met the Mondfrans's in 1947. The women of family studied the gospel of Jesus Christ for months. The Mondfrans’s returned to Ogden a few months later, never having baptized them or anyone else. They thought that their mission was a failure. 

History of the Netherlands Mission of The Church of Jesus Christ of Latter-Day Saints, 1861-1966, Keith Crandall Warne, Master's Thesis, 1967

In February 1948, Oma, my mother, and her older sister were baptized in a swimming pool in Utrecht and became members of the Church of Jesus Christ of Latter-day Saints. Oma then devoted her relentless energy to teaching the gospel to the rest of her family, and within a year, they all had joined the Mormon church, including the spouses of her older children, and Opa. They helped establish a branch in Hilversum, with Opa representing the LDS church in locating, negotiating, and purchasing a building for use as the chapel.

During her studies, Oma had learned about the promise of eternal marriage, with the promise that families could be together forever, when marriages were solemnized in the temple by those having proper power and authority from God. She became passionate about wanting her family to be sealed in the temple. There were no temples were in Europe at that time. The closest temple to Holland was in Salt Lake City, over 7000 miles away.

Oma began to discuss with Opa her idea of the family going to Salt Lake City. My grandfather thought it was a crazy idea. They did not have passports. They did not have visas to the United States. No one in the family spoke English. They could not afford round trip tickets. It simply was out of the question.

Oma agreed that they could not afford round trip tickets. So she said that it would have to be a one-way journey. The only way for her family to be sealed in the temple was to sell everything, leave their home country, and emigrate to America.

Opa said no. He loved living in Holland. He had no desire to start all over in a foreign country. Opa had worked at the Post Office for 33 years. He had a pension coming. He explained to Oma that the Dutch pension system would not remit payments to foreign countries. The pension money had to be collected in Holland, from the Bank of Holland. If Opa moved to the US, he would be unable to collect his pension.

All of my grandfather’s concerns were perfectly understandable. They were rational, and reasonable. Traveling to the US to go to the temple was simply not possible, he said.

My grandmother answered: "If the Lord wants us to go, the way will be opened to us."

Opa just sighed. He knew how strong-minded his wife was. Once she got a certain idea in her head there was very little chance she would change her mind. So he said that, if she could get the visas, raise $6000 (more than $60,000 today), and figure out how he could collect his pension in America, he would go. Then he put it out of his mind, because he knew it was not going to happen.

At this time (in 1949), US immigration law allotted only 3000 immigrant visas each year to Dutch citizens. Each visa recipient had to have a sponsor, and prove that they had sufficient funds to get established in the US. In post-WWII Europe, there was strong demand for visas to America. Eventually, Oma persuaded Opa to apply for 4 visas: the two of them and their two youngest children.

Meanwhile, Oma had to figure out where to get the money. She got the idea of finding someone who would loan them $6000, then be repaid from Opa’s pension payments in Holland. Opa sarcastically said that she should find an LDS family in Utah who had a bunch of pension money being held for them in Holland, and who would agree to let her and her family access those funds, and who would agree to let them be repaid from Opa’s future pension payments.

“That is the answer!” Oma answered enthusiastically, “We will find a person in that situation.”

“And how do you plan to find such a person?” Opa asked.

“We’ll pray about it and if the Lord wants us to go to the temple, He will lead some one to us.” Opa rolled his eyes and bit his tongue.

In April 1951, the family was awarded 4 visas to emigrate to the US. They had six months to find a sponsor, and find $6000. If they did not succeed within six months, the visas would expire.

Each day Opa would come home from work and ask, “Any news?” Mother would shake her head and say “It is up to the Lord.” Opa would smile and say nothing more. He did not want to move to America.

Several months went by. Each day, Oma would petition the Lord for a way to be opened for them to go to the temple. Those prayers were joined by my mother who was turning 17 in the summer of 1951. She had completed her studies in Dutch school system, and was the only family member who spoke any English. She very much wanted to move to America. But they had no money, and no sponsor.

In September 1951, five months had passed since the visas were issued. They would expire in 4 weeks. Nothing.

Three more weeks went by. Opa knew that they were not moving to America.

The first week of October arrived. It was the last week before the visas would expire. On Monday, Opa cheerfully asked, “Any money yet?” “No, but the week is nor over yet,” Oma would answer.

On Tuesday he asked the same question. “Not yet”, she answered, “but I did check that there is a ship leaving for the US on Saturday. It’s a freighter, and it still has room for the 4 of us.” My grandfather gave his wife an incredulous look, and bit his tongue.

On Wednesday Opa came home and asked the same question.

“Yes”, Oma answered, “Sister Mann’s daughter came over today. As you know, her parents emigrated to America two years ago. She just received a letter from her mother telling her that we can borrow her husband’s pension money. They have more than $6000 available and we can use whatever we need. They also will sponsor us. Tomorrow, you and Tina will have to go to Amsterdam to buy the tickets on the ship that I told you about. We will be leaving Holland three days. The Lord has just been testing us to see if we would have enough faith to wait this long.”

Brothers and sisters, do you believe in miracles?

My grandmother had already packed her bag. No one else in the family had done anything to prepare. Now they had three days to prepare to leave their home country and move to America. All because of my grandmother’s desire to be sealed in the temple. That desire, that hope, that faith, to be sealed to her husband and children for time and all eternity, was a moving principle.

Brothers and sisters, do you share that same yearning to go to the temple?

We are taught that faith can move mountains. I never have seen a mountain move, but I know that the faith of my grandmother brought her and her family into the church. It brought them to the docks of Antrwep on Saturday, October 9, 1951, to board the freighter Edam to New York. It brought them a 5 day journey on a Greyhound bus from NYC to SLC. It brought them to a fully furnished two bedroom apartment in SLC, prepared my members of their new ward. There even was a pot of soup bubbling on the stove. And it brought them to the temple, the house of the Lord.

My Oma’s faith was as bright as the sun, and powerful as a laser. Her faith was the moving force that has changed the course of lives of thousands of people. Her faith caused the spirit of the Lord to influence the actions of others: the Mann’s, who agreed to sponsor them, and loan them the money. The members of their new ward in Salt Lake, who put everything in place for these weary travelers. Those members who were willing to minister to people they didn’t even know, simply because they were asked.

When we are in the service of our fellow beings, we are in the service of the Lord.

My grandparents have hundreds of descendants. Dozens – including their great grandson, Garrett – have served full-time missions. Those missionaries have been instrumental in baptizing hundreds, if not thousands, of others. Among those converts, many have served missions. Many thousands of lives have been changed by the faith of my Oma, a 20^th century pioneer.

My mother is an immigrant to America, and became a naturalized citizen. I am in the first generation of that lineage to be born American. I am profoundly grateful to be a citizen of this country. 

We are taught that “it is not common that the voice of the people desire[] anything contrary to that which is right; but it is common for the lesser part of the people to desire that which is not right” (Mosiah 29:26). I fear that we living in uncommon times. We have an obligation individually and collectively, to oppose tyranny, oppression and unrighteous dominion, to speak and pray for peace, and to ensure the blessings of liberty to ourselves and our posterity in this land, a nation born of immigrants and refugees.

All of us are immigrants. “As members of the Church, we are admitted into the house of Israel. We become brothers and sisters, equal heirs to the same spiritual lineage. God promised Abraham that “as many as receive this Gospel shall be called after [his] name, and shall be accounted [his] seed, and shall rise up and bless [him], as their father.” A promise has been made to everyone who becomes a member of the Church: “Now therefore ye are no more strangers and foreigners, but fellow citizens with the saints, and of the household of God.” (“Ye Are No More Strangers”, by Bishop Gerald Causse, First Counselor in thePresiding Bishopric, October 2013 General Conference.)

            Being strangers in a new country, or new congregation, can be intimidating. A desire for the old country, or our old ways, sometimes can be overpowering. A fear of change, or of stretching, can inhibit growth.

In September 2000, when my family and I moved to Great Falls, I was a stranger to this ward. The second week of church, as I was trying to enforce reverence with my two year old (who now is sitting behind me as a returned missionary), I heard the Bishop unexpectedly speak my name, along with the words “young men’s presidency” and “scoutmaster”. I turned to Jennifer and asked, “Did I just get called to something?” She half nodded in surprise, and we both gave Bishop Croft the stink eye. I half stood, uncertain of what was going on, and tentatively sustained myself to an unknown calling. Yet with that calling, and subsequent callings, I have grown.

A few weeks ago, a grown man came up to me and fondly recalled how, 10-15 years ago, I had taught him in Sunday School as a teen. He said that he didn’t recall much of the substance of my lessons, but remembered how, at the end of each lesson, if everyone behaved, I would teach the class a "new truth" from the scriptures. Like how Nahum prophesied street racing (Nahum 2:4). How Jeremiah said we should not have Christmas trees (Jeremiah 10:1-4). Or how Jesus instructed his disciples to not watch television (Matt 17:9 “tell the vision to no man”). Or, most controversially, how there are no women in heaven (Rev.8:1). (Remember, these are meant to be facetious.)

            As should be clear from this talk, I can’t claim to have the same faith as my grandmother. I think I’m closer to Opa, not seriously thinking that the gospel lightning will strike me. Yet as I look back on my life, I can see the traces of Oma’s influence in my life. To stay the course. To keep going. To not question the things that the Lord sees fit to inflict upon me (see Mosiah 3:19).

            And the Lord has seen fit to inflict much upon me. The challenge of balancing my time. Seeing my children at times making unwise decisions. I have learned to let go of expectations and grant them their agency. I have walked through the valley of the shadow of death with my ongoing journey with metastatic cancer. And I have been rendered – in every meaning of that elemental word – by my wife’s descent into early onset dementia. It is wrenching to lose a loved one while she is still living. I hope that in being weighed and measured, I have not been found wanting (see Daniel 5:27). I hope to have courage to endure to the end (see D&C 14:7).

            And yet, I can find joy in every day. I have been sustained by the love of my family. Garrett, you do not know how your weekly letters gave me strength to carry on. Your selfless service nourished my soul during a spiritual famine. They were my weekly manna. Thank you.

            I have been sustained by the love and support of my friends during these difficult times. Thank you. And to all the members of this congregation, who have supported and sustained me during these 18 years, thank you. May the grace of the Lord Jesus Christ, and the love of God, and the communion of the Holy Ghost, be with you all. (2 Cor. 13:14)

Infusion 49: now on 4 week schedule

Earlier this year Bristol-Myers Squibb obtained FDA approval to have nivolumab administered every four weeks, instead of every two weeks. After Dr. Hahn told me that he was dosing virtually all of his patients on a 4 week schedule, I asked my Kaiser doctor whether I could shift to that schedule. She agreed, so today I have my first 4 week dose (a Q4W (480 mg) flat dose). An added benefit is that this Opdivo dose can be administered in 30 minutes instead of an hour, making my infusions not only less frequent but faster. The only downside is that my infusion nap isn't as long. 

Four week intervals also means that scheduling my infusions becomes much simpler, especially because I'm going back and forth between DC and Utah. I fly to Utah on July 2, and will come back with Garrett on July 22. His homecoming will be on July 22 (Scott's Run building at 1 pm, y'all come). I'll have infusion #50 later that week. Then we'll go back to Utah for three more weeks. The week of August 12, we'll return to DC. On Saturday, August 18, I'll drive Garrett up to Pittsburgh so he can move into his dorm at Carnegie Mellon. My baby's going to college! Then I'll have infusion #51 the following week, along with my very last follow-up with Johns Hopkins. Whether I transfer my care to Utah may depend on whether my mets are responding to this treatment. If not, I'll likely pursue clinical trials in the DC area. But I'll worry about that later. I'm simply grateful for each day.

A four-week schedule also means that my blog posts likely will be less frequent, as I try to post when something happens related to my cancer. If you're looking for something else to read, I recommend the following:

Circe by Madeline Miller
Educated by Tara Westover
The Broken Earth trilogy by NK Jamison
Book 1: The Fifth Season
Book 2: The Obelisk Gate
Book 3: The Stone Sky
Station Eleven, by Emily St. John Mandel
American War, by El Akkad
The Handmaid’s Tale, by Margaret Atwood
The Sparrow, by  Mary Doria Russell
Children of God, also bt MD Russell
Fourth of July Creek, by Smith Henderson
The Dispossessed, by Ursila Le Guiun