Mets Day 867 - NIH guinea pig

Yesterday I received a call from Dr. Andrea Apolo, who specializes in bladder cancer research for the National Cancer Institute at the National Institute for Health. She has been following my case since April 2012, when I met her at a BCAN conference. She told me that NIH just obtained a new toy - a highly specialized combined PET-MRI scanner. In the past couple of years, researchers have been theorizing that such a combined imaging device would improve doctor's abilities to locate distant metastatic nodes or small tumors. An 2013 article in Current Radiology Reports discusses possible applications in clinical imaging for a PET/MRI scanner. A September 5, 2013 article in Medscape concludes that the new PET/MRI scanner may enhance cancer diagnosis.

Now that NIH has acquired this machine, they are looking for patients with distant metastatic nodes who have had prior CT scans to be tested with the new scanner. NIH wants to evaluate and calibrate the scanner before using it in clinical trials. Dr. Apolo said that she immediately thought of me, and asked if I would be willing to be one of the first people to be scanned. I told her that was fine, and she said that her research nurse would call me to set it up in the next week or so. 

Having this scan means that the CT/PET scan that I was going to have in mid-October probably won't happen. I'm not sure whether there will be a series of scans over the next few months with the PET-MRI scanner, or if I'll go back to regular CT scans, or what. I figure I'll find that out when I show up. This means that I won't be going to GW next week to have my port cleaned, since NIH will take care of that when I'm being injected with whatever radioactive isotopes this new machine needs to light up my cancer cells.

As far as risks, they appear to be minimal - other subjects have reported having a glowing personality after the scan, while others have been treated as radioactive by their friends and family. Since I've already passed both of those milestones, I figure there's little downside.

Mets Day 825: Good CT scan

Today I went in for another CT scan at NIH. Unlike many other times, today NIH was running efficiently, with minimal wait times for my blood work or scan. My follow-up meeting with Dr. Apolo was not until the afternoon, so I had lunch with Cynthia and an old Bethesda Italian eatery called Pines of Rome. I returned to meet with Dr. Apolo, who was delighted to report that my scan showed no further spreading of the cancer. In fact, she said that the node in my neck appeared to have shrunk slightly in size since the last scan. It was as good as a report as I could hope for.

She also said that there was some promising progress on treatment for solid tumor mets bladder cancer. Clinical trials on patients with distant solid tumors in organs, or with nodes over 1.5 cm in size, were showing success rates of over 50% in patients whose cancers were expressing a certain protein, and 10-15% success in others. She said that NIH was starting its own trial in the next few months, and that if my disease progressed, I'd be a good candidate. But she was quick to add that it would be far better for me if I never entered the trial, because that would mean that my cancer had not spread any further.

Dr. Apolo said that, although my cancer had no shown any growth for nearly a year, it was too early to talk about complete remission. I still have an enlarged node in my neck, which we know contains mets bladder cancer. She said that it was very rare (but not unheard of) for mets bladder cancer to  stop spreading, and for enlarged nodes to shrink back to normal. But I shouldn't get my hopes up yet, however, as it took 15 months for my BC to travel from my abdomen to my neck. But the longer I go without further spreading being detected, the more unusual my case becomes. And I'm ok with that.

She said that she would do another CT scan in October (and ordered a PET scan on top of it), and if those were negative, she would do scans in January and April 2015. If those continued to be negative, she would be ok with going to 6 months scans. That seems a be far off in the distance for me. I'm keeping my horizon limited to three month intervals, and take the news as it comes. 

I'm grateful for the three month renewal on my lease of life, and grateful that I don't have to enter another unpleasant round of therapy. While I was waiting, I was reading The Fault In Our Stars, and I'm grateful that neither I nor my loved ones will have to deal anytime soon with the prospect of active metastatic cancer hollowing out my body.  Eventually we all will see the past, present and future as we pass the three faces of Cerberus, but not me in the next few months. 

Home again, home again, jiggety-jig

Jennifer and I spent all of our 10 days in Utah visiting family and friends. We of course spent as much time as we could with our granddaughter, Rose. It was wonderful to see her again. Chelsea and Josh are settling into their new home on Ogden's East bench. Chelsea has started her residency (she delivered 10 babies in her first three days at the hospital), and Josh is working on the house and job-hunting. I spent a couple of days working with Josh rebuilding the steps up to their back deck. It was hot in Utah, approaching 100 degrees each day, but the humidity was below 15% which made it somewhat bearable. Nevertheless, my stamina was significantly lower than Josh's, and I was grateful to take breaks watching Rose while standing under the cooling flow if their swamp cooler.

Jennifer and I had rented a 3 bedroom condo in Ogden, and we were joined in Utah by my mom and stepdad, Tina and Ralph, as well as my sister, Ravonne, and Spencer. My brother, Art, and his family live in Park City, Utah. One of the reasons for our Utah trip was to pull off an 80th birthday party for my mom and Ralph. We 3 kids had arranged for an outdoor pavilion, sent out invitations to family and friends, arranged for food, and got the place ready. On the afternoon of Saturday, July 5, it all came together for a delightful afternoon. When my mom and Ralph approached, we three kids got down on our knees and bowed as if to the Pharoah. My mom snorted and said she had to have a picture. We said we'd do that once every 80 years. More than 100 friends and extended family showed up to visit and reminisce.  It was a wonderful way to honor two great people.

Earlier that day, Jennifer and I attended a 37 year reunion of the Valley Jr. High School class of 1977. Valley was a K-9 school in Ogden Valley, where I grew up. There were about 50 kids in our class, and we went to school together for all those years. Two of my classmates (Jodi and Scott) married and have stayed in Huntsville. Jodi read on my blog that I was coming to Utah in July, and decided to pull together a reunion of our class. Brad, another classmate, generously made his Huntsville home and yard available. About half of our class was able to attend. I had not seen many of them since 1980, when we all graduated from high school. It was nice to see everyone, catch up, and reestablish old friendships. Thank you to Jodi, Scott, and Brad, for pulling that together.

The rest of the time we spent visiting with Jennifer's family -- almost all of them were in town for the 4th of July weekend -- or visiting with my family. I also was able to catch up with other old friends. I have not lived in Utah since 1985, but childhood friendships run deep. Nevertheless, by the end of our stay, I was tired of traveling and ready to head home. The morning of our flight to DC, I awoke with an upset stomach. I had caught a bug that was going through some of our families, which made for a long flight home. It's still with me three days later.

It's always good to come home after bring on the road. There's nothing like your own bed, pillow, home, and stuff to provide a sense of normalcy. But home also brings its own issues: our clothes dryer stopped working the day after we got home, and I spent several hours taking it apart and testing every circuit and relay with my volt meter. It's either the printed circuit board or the motor, so I think fixing it will cost about the same as a new one. We got 14 years of hard use out of it, so I'm only slightly put out. And I still have a long to do list, should I ever find the motivation.

While Jennifer and I were gone, Kirsten and Garrett had to fend for themselves. Kirsten was used to it and did fine, she tells us, but Garrett usually would get so busy playing video games that he would forget to eat. Kirsten told us that she would get home from work at 11 pm and Garrett would look up from the tv, realize how late it was, and it would dawn on him that he had not eaten. He would then fall to the ground like a World Cup player taking a dive, rolling in the agony of hunger pains, and would beg Kirsten to fix him something to eat. Sometimes she would throw a piece of fruit at him, but other times she would cook him something. In her big sister omniscience, she has decreed that her 16 year old brother needs to grow up. I have not yet received Garrett's side of the story, because this week he has been attending the summer high adventure with his boy scout troop. In any event, they both survived the absence of their parents for three weeks.

While I get to be a homebody for the next few weeks, Jennifer unpacked and then immediately repacked to go to West Virginia, where she will spend a few days with a group of her friends. They'd been planning that gathering for a while, and she knew that there would be a short turnaround time. Hopefully she can get some R&R in the Appalachians.

My next CT scan is on Tuesday, July 15. I'll post the results when I get them. I've spent little time worrying or wondering what the results will be. I fully accept that I don't control my prognosis, so whatever comes will come. I no longer have the unthinking expectation or blase assumption, held by  so many Americans in their 40's or 50's, that they will live into their 70's, 80's, or 90's. As I tease a third year of life from metastatic cancer, I am increasingly grateful for each day that passes, each friend I can greet, each relative I can hug. The absence of something, or the demand for which there is no certain supply, increases the value of a good. So it is with life in the face of metastatic cancer.

Seattle and Alaska Vacation Recap

Jennifer and I arrived in Seattle at around midnight on Tuesday, June 17.  We used our frequent flier miles on United, connecting through Chicago. We picked up our rental minivan from SeaTac and drove up to the Four Points by Sheraton (free, courtesy of our accumulated Starwood points) next to the Seattle Center and immediately crashed, since it was 4 am eastern time. 

On Wednesday, July 18, we slept in, then made our way over to Top Pot Donuts – a highly-rated local chain – and approved of their offerings. We then drove downtown to Pike Place Market and wandered through the maze of shops. For lunch, we had excellent soups from Pike Place Chowder (I got a sampler of 4 different chowders). We then stumbled across Daily Dozen Donuts, which serves baby donuts scooped hot from the fryer and dropped into a paper bag with a bunch of sugar and cinnamon. Yum!  Later that afternoon, we met up with Cindy, one of our friends from when we lived in Woodside Park MD back in the 1990s.  Her two kids are the same ages as Chelsea and Spencer, and Cindy and Jennifer were in a babysitting co-op. Cindy and her husband Doug moved to Seattle about seven years ago to work at a university there. She drove us around the neighborhood where they live and work. Doug met us for dinner at Ray’s Boathouse, on the waterfront north of the inlet to the Ballard Locks and Lake Union. It was nice to reunite with old friends.

Thursday morning, Jennifer and I ate a more traditional breakfast at a nearby café, then went to the Olympic Sculpture Park, part of the Seattle Art Museum. I provided a commentary on each piece of modern art: “This symbolizes man’s conflict with nature, and his constant struggle to redefine himself in the face of oppression.” It was amazing how variations of that commentary worked for each piece. I’m not a fan of modern art. I then dropped Jennifer off at SAM’s main building, and drove down to SeaTac to pick up Bill, Bernice, Cynthia, and Walter, our good friends who were joining us for the cruise. I read on my iPad while waiting for them to arrive and collect their baggage. I had downloaded a bunch of books using Fairfax County Library’s on-line app: most of Mary Doria Russell’s books (The Sparrow, Children of God, A Thread of Grace, and Doc); Jon Krakauer’s Under The Banner Of Heaven; Leo Tolstoy’s Anna Karenina, The Maze Runner by James Dashner, A Grief Observed by C.S. Lewis, and two of Ken Follett’s older books (On Wings of Eagles, and Pillars of the Earth  (which I’d read twice already). Anyway, I eventually picked up our friends, then collected Jennifer on our way back up to the hotel. I had arranged for a two bedroom suite with a queen hide-a-bed (again using points), so we all piled into our room, dropped our bags, then returned to Pike Place Market. They were eager to try the chowder, and Jennifer and I were happy to sample other varieties. All were good. We then drove up to Fremont – a funky liberal offbeat part of Seattle – and drove by the Fremont Troll (a large sculpture of a troll head crushing a VW bug, located underneath a bridge), and a genuine statue of Vladimir Lenin, salvaged from a Chekoslovakian junkyard in the early 1990s. Why anyone would want to commemorate someone who had more blood on his hands than Adolf Hitler is beyond me. At least Lenin’s hands were painted red. For dinner, we picked up remarkably good sandwiches from Paseo’s and went to Gasworks Park at the north end of Lake Union, where we watched the sun set at 10 pm.

Friday, June 20, Bill and Walter got up early for a walk, and came back with a dozen Top Pot donuts.  Bless their hearts. We then walked to the Chihuly Exhibit at the Seattle Center. Dale Chihuly is an innovative artist who has created a new art form with huge hand-blown glass pieces – chandeliers more than 20 feet tall; floor sculptures looking like something from a Dr. Seuss book, entire gardens mixing glass, plants, water, and light; huge bowls with amazing colorations; and much more. Amazing stuff. We then spent some time in the visitor’s center for the Bill and Melinda Gates Foundation, and came away impressed at all of the innovative and amazing things that it is doing to attack some of the most pressing and intractable issues in the world. After an afternoon nap at the hotel, we decided to stop by Kerry Park, featuring great views of downtown and Mt. Ranier. While driving up the steep hill of Queen Anne Avenue, we stopped behind an Audi A4 at a light. When the light turned green, the Audi lurched forward, stalled, and promptly rolled backwards and hit the minivan with a solid thunk. The driver – a kid who looked like he was 14 – got out and was close to tears. I told him to pull off the road and give me his license and insurance card. It turned out he was 16, had had a learner’s permit for 3 weeks, was driving his friend’s dad’s car, and it was his first time driving a manual transmission. The friend was in the back, saying how his dad was going to kill him. When we couldn’t find the insurance info, he had to call his dad to ask where the insurance card was. I could hear his dad’s displeasure from outside the car. I took pictures of the driver’s license, the insurance card, and of both vehicles. Fortunately for me, the damage to the minivan was limited to a bent license plate and a mark along the bumper.  I told the kids that I wouldn’t file a claim unless the car rental company had a problem with the car. I also urged him to learn how to use the emergency brake when starting on a hill, until he mastered the right heel-brake/toe-gas method of starting on a slope. After that excitement, we made our way to Kerry Park, where Bill dropped his new binoculars and knocked the optics out of whack. We avoided further accidents when having dinner at 5 Star Seafood, home of all you can eat fish & chips on Friday. And it was actually very good.

Saturday was departure day for the cruise. We were nervous about getting to the dock, because we learned the night before that the Rock & Roll Marathon would be closing most of the streets between our hotel and the cruise dock. We had a light breakfast of fruit and yogurt, then left at 10 am for a three mile drive that we feared would take hours. As it turned out, it took only 15 minutes to drop off everyone else and our bags at the dock. Bill wanted to get new binoculars at the REI mother store, and since we had enough time, off we went. An hour later, we dropped off the rental at Dollar – no problem with the front bumper – and the agent drove us down to the dock. We were all aboard by noon. A couple of weeks ago, NCL had upgraded all of us from oceanview cabins on the 5^th deck to balcony cabins on the 9^th deck (for B&B, and C&W), and the 10^th deck for Jennifer and me. Nice! Our cabin was on the starboard (right) side, exactly one level below where our room was during our European cruise, just aft of the rear elevator and stair stack. The others new rooms were near the forward stack on the port side. Bernice and Cynthia made a beeline for the spa, where they signed us all up for the unlimited spa access package (limited to the first 50 people). Jennifer and I had extolled the relaxing virtues of NCL’s spa during our prior cruises in Europe and the Caribbean, and our friends wanted to share the experience. The spa quickly became our hangout for the cruise. We all loved the sauna, steam room, Jacuzzi, and especially the heated tile lounge chairs with a view of the entire front of the ship from the 12^th deck.  Bernice dubbed it the “loafateria” as our prior vacations together have been dominated by loafing and eating. The Garden Café buffet was dubbed the “gluttonarium,” and we did our best to honor the name. What more could you ask for in a cruise?

Sunday, June 22, was a sea day. I woke up before Jennifer, went up to the café for an omelet and some fruit, then made my way to the spa. Jennifer found me a couple of hours later, and said she was feeling a bit queasy. We were sailing around the western side of Vancouver Island and the sea had a moderate swell of 6-8 foot waves, so there was some rocking of the ship. While Jennifer was on her way back to the room for some medicine, she was overcome with nausea. She grabbed a towel from a nearby cart and emptied her breakfast into it. A couple of minutes later, she felt much better, although the nearby steward seemed horrified. She took some Dramamine, then came back to the spa. After making sure she was ok (she laid down on the heated stone recliner and immediately went to sleep), I went to the medical office and got a different kind of anti-nausea pills, as well as some crackers. Fortunately, that was her only bout; as soon as we rounded Vancouver Island and entered the Inside Passage, the waters were calmer. The rest of the day was spent loafing, eating, loafing, and eating some more.

Monday morning we arrived in Ketchikan at about 7am. It was drizzling on and off most of the day. Bill and Walter got it into their minds to hike the Deer Mountain Trail, a 4-5 hour hike with a vertical rise of about 3000 feet. The rest of us wished them luck (“Have fun storming the castle!” we said in our worst Billy Crystal/Max the Healer voices). Cynthia signed up to go sea kayaking. Bernice wanted to stay on board, sleep in, and enjoy the spa. Jennifer wanted to see totem poles, bald eagles, and Native American stuff. We got off the ship a bit before 8am, walked to the visitor’s center to ask about car rentals, and were directed to a board with two options: Bob’s car rental, and Carl’s cars. Carl didn’t answer his phone, but Bob did, and drove down to pick us up and drive back to his house, where he kept a few cars that he rented out to tourists like us. Along the way we learned that he had done everything a person could do in Alaska: logging, fishing, pipeline building, contracting, and more. He ran the car rental business on the side. He shoved a barely legible form at us (that’s when I saw a day’s rental was $85, but oh well), and we got a Chevy HHR with a damaged fender.

We drove north to Totem Bight State Park, which had more than a dozen beautiful totem poles and a long house set against the ocean. We learned how totem poles were mostly carved between 1810 and 1860, as the native tribes experienced an explosion of wealth trading with Europeans. By 1900, most Native Americans had abandoned their traditional villages and relocated to newly established towns, which offered schools, health care, reliable jobs, and better housing. The totem poles and villages were largely abandoned and the craft slowly forgotten. In the 1930s, the Civilian Conservation Corps started collecting the abandoned totem poles and hired the Native elders to teach the craft to the younger generations. Many of the poles in Totem Bight were the result of the CCC’s work.

We then drove over to Ward Lake, a small glacial lake surrounded by stunning vistas. We parked in a campground and as we walked around a bit, Jennifer said, “I could spend a few weeks here.” I silently added, “in a 40 foot class C RV with 3 tip outs, satellite TV and internet.” As we walked around the lake, who should we meet but Bob the rental car guy: He had rented a full size van to a bunch of Chinese tourists, and none of them were comfortable driving such a large vehicle, so for an extra $50, he agreed to be their driver. Bob is the type of guy who could talk your ears off. We gradually eased away as he was winding up for another tale, explaining how there was so much to see and so little time. We escaped to our (his?) car, and drove south through Ketchikan, picking up Bernice along the way.

Our next destination was the Saxman Native American Center. This was a more commercial version of Totem Bight State Park, with lots of brightly painted totem poles, a carving center, and a presentation by members of the Tlingit tribe. Not as authentic as the State Park. We then backtracked into Ketchikan, and toured the Totem Heritage Museum, which featured a large number of totem poles and related historical artifacts set in an indoor location. It was an informative visit. By then, I was ready to return to the ship, so I took the girls into town where they proceeded to warm up the credit cards, while I returned the car (which consisted of leaving it by the dock with the keys under the floor mat), went on board, got some lunch, and went to the spa. Later, we connected with Walter and Bill, who said that the sole of Bill’s 30 year old hiking boot fell off halfway up the trail, so they were unable to make the summit. They recuperated in the spa. Cynthia returned from her kayaking trip also ready for the spa, so that’s what we all did.

Tuesday, June 24, we arrived in Juneau at 7am. Bill, Bernice, Jennifer, and I had booked a helicopter flight to the Mendenhall Glacier, with the bus leaving the dock at 7:15am. The driver was a bright-eyed BYU student who was in Juneau for the summer. We later learned that Juneau’s summer tourism industry recruited heavily from BYU and other schools with large Mormon populations, and there were nearly 150 Mormon students with summer jobs in Juneau. He took us to the heliport where other BYU students outfitted us in studded galoshes and showed us the safety video. The four of us trundled to the helicopter, buckled in, and swooped off up, over, and around the nearby glacier. After circling a couple of times, we landed on the glacier, where we were met by a guide who showed us around the glacier. We were the only group on the ice at the time, and we were free to wander around, exploring potholes, crevasses, fissures, rock formations, and streams of melted glacier. The guide explained how the pressure of glacier formation compacted snow by a factor of 5 (i.e., 100 feet of snow is compacted into 20 feet of ice), which was so dense that only the shortest wavelength of light could emerge, thus accounting for the bright blue colors. He added that the potholes were formed by rocks smaller than the size of a basketball, which heated in the sun and melted through the ice. Larger rocks, by contrast, cast such a shadow that the ice under them melted at a rate slower than the surrounding ice, causing ice pedestals topped by rocks. We could hear the rushing of water through and under the glacier as it slowly melted. It was a really neat experience. As our helicopter swooped back in to disgorge another load of tourists and pick us up, we saw three more helicopters landing at the same time, unloading a bunch more people. We were glad we were on the early shift, and left before it became too crowded.

Upon our return, we were met by our old friends, Beth and Grey, who have senior positions with the U.S. Forest Service and Alaska Department of Fish and Game. They gave all 6 of us a private tour of Juneau and its surrounding area. They pointed out a number of bald eagles – apparently the best place to view them is near the landfill – then drove on to the Mendenhall Glacier National Park and walked to Nugget Falls, a torrential cascade near the glacier. Beth explained how the glacier was dramatically melting, and that the pace was increasing. We admired the icebergs in Mendenhall Lake, and wondered about global warming. They then drove us around Mendenhall Loop Road to Auk Lake, where we walked along the water to a swim platform where hardy Juneauans went for a dip in the 59 degree waters. They then drove us up Gold Creek, through a beautiful canyon, to an area silly with hiking paths. The summer sun rose at 3:40am, and set at about 10pm, and the locals were intent on squeezing out every minute on outdoor activities, perhaps to compensate for the 6 hours of daylight during the long, dark winters. We appreciated our friends’ hospitality and their tour of the Alaskan capital.

We returned to the ship at 1:10 pm, just in time for the 1:30 pm departure. Our goal was the Tracy Arm glacier, about 60 miles away by water. We entered the Tracy Arm fjord at about 4pm, and the ship slowed to about 10 knots as we sat on our balcony and sailed by an increasing number of icebergs and scenery seemingly out of The Lord of the Rings. Mountains surged out of the water and climbed almost straight up for thousands of feet. Cascades of water streaming from the mountain tops obscured by clouds plunged into the ocean. We could trace some of the paths for three or four thousand feet. Each of those waterfalls would have been a major tourist attraction in the lower 48. Soon, they became so common that we focused only on the largest of the plumes. We saw seals swimming along side the ship. Occasionally small icebergs would grind past the hull.  As we approached the entrance to the Sawyer Arm and its glacier, our ship (larger than a WWII aircraft carrier) sailed by a smaller cruise ship of about 350 feet. The fjord was so narrow that we were less than 100 feet from the cliff on one side, and 100 feet from the other ship on the other. The captain slowed as we approached the Tracy Arm glacier, a massive icefall with a bright blue base. The last mile was jammed with ice floes, and the captain decided that he did not want to be like the Titanic. We slowly turned 180 degrees, pushing ice away as the ship pivoted, and retreated back to the Pacific. We enjoyed the view of the other side of the fjord from our balcony, occasionally retreating to our room to warm our fingers. Growing up in the Rocky Mountains, I thought I knew mountains. But the dramatic force of these Alaskan fjords were breathtaking. I was reminded of the Norwegian fjords Jennifer and I saw in 1985, when we spent the summer backpacking across Europe, from the Arctic Circle to Greece. The Tracy Arm was probably the most beautiful part of our trip. 

Wednesday morning we awoke in Skagway, the starting point for the 1898 Yukon Gold Rush. We hopped off the ship and boarded the narrow gauge train waiting at the dock. We rode the White Pass and Yukon Railroad up to the White Pass summit and the border with Canada, listening to the narration by – you guessed it – a BYU student who was spending his third summer as an Alaskan tour guide. We learned how the railroad was hacked out of the sides of mountains in 16 months, and was finished just as the gold rush was ending. It nevertheless became a key transit route between Canada and the Pacific Ocean. (Skagway is the only one of the three Alaskan ports that we visited that was actually connected by road or rail to the rest of the world.) At the top of the pass, we flipped our seatbacks over so we could face forward on the train ride back down the mountains.

Upon our return to the dock, I had little desire to walk through the small town and look at the shops of schlockunjunken. Jennifer gave me a stern look, and I realized that whatever good husband points I had earned by driving her all around Ketchikan held no credit in Skagway. I ambled along while the others went back and forth on where to eat. Finally, Cynthia announced that she was going back to the ship, and I leapt at the chance to see that she got there safely. The two of us went back to the gluttatorium for lunch, then to our respective cabins for naps. Jennifer ended up having lunch at a pub with the others, then went off on her private shopping trip, returning with delight at her finds. I especially appreciated the bag of caramel corn. Life is good when everyone is happy.

Thursday was a sea day, marked by sleeping in, a leisurely breakfast, loafing in the spa, emerging for more food, then either returning to the spa for more loafing or naps in our cabins. We all met for dinner in one of the dining rooms, enjoying each other’s company and conversation.  Cruising with friends is fun.

Friday we arrived in Victoria, B.C., at about 1:30pm. Jennifer, Walter, Bill and Bernice wanted to go to Butchart Gardens, a beautiful collection of outdoor gardens about 15 miles north of town. Cynthia and I had little interest in looking at flowers, so we took a cab into town with the intention of touring the Royal BC Museum. After seeing what it offered, and being spoiled by the Smithsonian Museums in DC, we decided to pass. We instead walked across the street to the British Columbia Legislative Building, where we were the only Americans on the tour. Our delightful guide was a student from Nova Scotia with the unlikely name of Attica. Cynthia and I looked at each other and smiled; we both were consumed with curiosity of why that name? I thought of the Attic peninsula in Greece, the cradle of democracy. Cynthia thought of Attica State Prison in NY and the famous riot in 1971. I asked Attica why her parents chose the name, and she blithely responded that her parents just really liked the sound of it, and had no other reason. She continued the tour, explaining about the Canadian provincial system of government and the Confederation that brought Canada together. Apparently, Victoria and BC were being actively courted by the US; after the US purchased Alaska from Russia in 1867, Canada faced the real prospect of losing its entire west coast to the US. The new Confederation agreed to assume the collective debt of Victoria and BC, plus build a massive new shipyard in Victoria. As residents of the US Capital, such wheeling and dealing sounded perfectly rational.

We walked across the street and through the Empress Hotel, a massive neo-chateau structure built in the early 20^th Century. People pay $60 each to attend high tea, which appeared to me to be a reminder of why the British were kicked out of the US.  People were actually extending their pinkies to slurp their dregs. Civilization is overrated.

We ambled past a guy dressed as Darth Vader enthusiastically playing a violin, while his light saber swung by his side.  Don’t ask why, I thought. We found our way to the Canadian Maritime Museum, where we had planned to spend only about 45 minutes, but it quickly swallowed three hours. We both were fascinated by the artifacts and history of seafaring in Canada, and especially enjoyed the goofier bits. For example, we learned that the development of the torpedo in the late 1800s was “partially successful,” marred only by steering problems, lack of range, and premature detonation. Other than that, it worked fine. We also learned that the distribution of rum to British sailors was the primary cause of death on board ship, usually because drunken sailors slammed their heads into bulkheads, causing traumatic brain injury. We admired a “bone ship” built by a French prisoner held for years on “prison hulks” on the River Thames during the Napoleonic Wars: a minutely detailed ship more than a foot long, built entirely of animal bone scavenged and carved over a period of two years. We also learned of the “Canadian Titanic”: the sinking of The Pride of Ireland in 1914, when it was rammed in the middle of the night by a Norwegian collier in the St. Lawrence River and sank in 14 minutes, killing more than 1,000 people. And we also learned that the path that we had just taken on our cruise had seen a number of notable wrecks over the past 100 years, some of which had hundreds of casualties. We returned to our ship a little more grateful for modern seafaring technology.

Saturday, June 28, we awoke back in Seattle. We disembarked at the last call at 9:30am, having enjoyed our cruise. It was our third NCL cruise in less than a year. The food was the best of the three, as was the company. I can’t wait to do it again. We still had a few more days together with our friends, however: Jennifer and I would fly to Utah on Monday evening; Cynthia and Walter would return to DC on Tuesday, and Bill and Bernice were staying through the rest of the week. We were met at the dock by Bill and Bernice’s son, Levi, who took his parents to pick up a rental car. Soon Bill came back at the wheel of a Chevy Suburban, which was nearly as large as the cruise ship. It easily swallowed all of our luggage, and the six of us piled aboard. We dropped our bags off at the Mozart Guest House, a bed and breakfast near Volunteer Park, then spent the day with Levi. We walked through the nearby Olmstead-designed park, named for the World War I volunteers. Walter was jonesing for pizza, so we ambled about a mile to a reputedly good joint, and it indeed fit the bill. Since we were still on vacation, we decided that an afternoon nap was in order. For dinner, we joined Levi and two of his friends at the Oyster House, where I declined to suck those viscous lumps of goo.

Sunday we awoke late, enjoyed a full breakfast courtesy of the inn owner, then trooped over to Bellevue for the annual Strawberry Festival. It was more like a local fair, with an antique car show, tons of different types of food (including a few with strawberries), local vendors, community groups, and kids’ activities. After we gazed and grazed, we headed out to Snoqualmie Falls, a 270 foot waterfall about 30 miles west of Seattle. For dinner, we went to 5 Star Pies for their savory and sweet pies.

Monday, June 30, was our last day in Seattle. Our flight was not until the afternoon, so  we spent the last day visiting some other sights. We went to the Duwamish Tribe’s Longhouse but contrary to the website, it was closed. We also stopped to admire the unusual architecture of the downtown Seattle public library. For lunch, we braved the crowds by Pike Place Market to get Russian baked treats from Piroshky Piroshky, then ate them on the grass at Victor Steinbrueck Park. It was another warm sunny day, like all of our days there. We said our goodbyes, then Bill dropped us off at SeaTac. Jennifer and I looked at each other with the same thought: I can’t believe we’re now going to spend 10 days in Utah.

Mets Day 797 - Off to Alaska, etc.

This evening Jennifer and I fly to Seattle, where we will spend a few days with two other couples.  On Saturday, the six of us will board the NCL Jewel for a 7 day cruise up the inside passage to various places along Alaska's lower panhandle. We'll return to Seattle on June 28, spend a couple of more days there, then fly to Utah on June 30, where we'll visit family (including baby Rose!) and friends. We'll return to DC on July 9. It's a bit less strenuous than last summer's European tour, and we're looking forward to it. I'll probably post a couple of times while we're on the road.

I find that my ability to meaningfully plan ahead is limited to rolling three-month windows. I am mindful that the next scan could show that my cancer is spreading, and that I'll need to plunge into another round of chemotherapy or other form of treatment. I've also discovered that many travel insurance policies specifically exclude complications from preexisting cancer. So we fly Southwest, which has no change fees, and allows credit to be transferred to anyone else, and time our other bookings until after my most recent scan. My next scan is July 15, which means that we have not planned any more trips beyond that.

Each Monday I receive an emails from BCAN listing all of the prior week's questions and journal entries from others dealing with bladder cancer. I typically post about a half-dozen or so responses, and frequently enter into a dialog with fellow patients or their caregivers. This past week, for example, I traded notes with a bladder cancer survivor in his mid-50's who lives only about 20 miles away from me. He's also dealing with a leaky neobladder, and asked:

I saw your post about an incontinence drug, and have questions. Namely, if it helps you at night, does it inhibit voiding during the day? 

I responded:

Talk to your urologist about trying either imipramine or Cymbalta for nighttime incontinence. Take it at bedtime. Start with about 25 mg, then try upping it to 50 mg. (A therapeutic dose for the labeled purpose is over 100 mg, so you should not experience any mood alteration at those low doses.) Cymbalta didn't work for me, but I found that 50 mg of imipramine was effective at keeping my neobladder from contracting by itself for 8-10 hours. I started at 25 mg, detected some improvement, and followed my urologist's advice to up it to 50 mg to see if that was better. If I try to void within 8-10 hours of taking the imipramine, I find that it's harder to squeeze the neobladder, although it's still possible. It just is a series of short squirts instead of a longer flow. The effect of the drug wears off after 8-10 hours, so there is no difference during the day. The urologist who suggested this said that he'd found about 30% of his patients who had their prostates removed found some improvement using these low doses of one of these two drugs. If you don't see any improvement after 2 weeks, then you're in the 70%. It's worth a shot. There's little downside to trying such low doses, and it helped me a lot. 

I also recently traded notes with a woman in New Zealand whose husband was recently diagnosed, and was trying to come to grips with all of the treatment options and information overload. I've been trying to support her by sharing some of my experiences. A cancer diagnosis certainly teaches a new vocabulary, drinking from a firehose can be exhausting.  Together, we're better. 

Mets Day 791 - Welcome to Medicare

A couple of days ago I received an envelope welcoming me to Medicare. I looked at the envelope with the same jaundiced eye that I use whenever I receive an AARP mailing. Eventually I peered into the envelope and thumbed through the contents.

A bit of back story: As I explained in a previous post, the federal government classifies all persons with metastatic BC as totally disabled, regardless of how they are otherwise able to physically function. This is because the long-term survival odds are so low for those with mets BC. Thus, in September 2013, the Social Security Administration concluded that I was 100% disabled as of May 2012. After the required 5 month waiting period from the onset of the disability, SSA concluded that I was eligible to receive SSDI benefits as of October 2012. I continue to receive a monthly SSDI payment, and Garrett also gets a monthly payment as a minor.

Another SSA rule says that, if someone under age 65 is found to be totally disabled and eligible for SSDI benefits, then two years after the SSDI benefit eligibility date, that person is eligible to receive Medicare benefits. Thus, the letter stated that I qualify for Medicare effective October 1, 2014, because that is two years and five months after my bladder cancer was confirmed to have metastasized outside of my bladder and into my lymphatic system. (May 2012 + 5 months + 2 years = October 2014.) I don't pretend to understand or agree with the policies behind these time periods, but am just relating how the rules apply to me.

I thumbed through the enclosed Medicare pamphlet and looked at the online handbook, and learned about Medicare Part A, Part B, Part C, and Part D. Part A is "free" (no extra cost to me personally); but there are costs associated with the rest of the coverage. Fighting to keep my eyes from glazing over, I read various warnings about penalties if I didn't properly enroll. I looked into the exceptions, and learned that as long as I have private insurance provided by an employer, I probably didn't have to pay for parts B-D. That continues to be the case with me: as a partner at my law firm, I still receive comprehensive health insurance for me and my family. As an equity partner, I am considered a co-owner, so there is no employer contribution towards my health insurance. In other words, I get to pay 100% of the actual cost of my health insurance for me and my family, which is over $22,000 per year.

I've confirmed with the benefits coordinator at my law firm that my ongoing participation with my law firm's health insurance means that I do not need to pay for Parts B or D of Medicare.  If I was to leave my firm's private insurance plan, and go on Medicare, I'd still need to pay for Parts B and D, or join a private insurance company under Part C, in order to have the same type of coverage that I currently have through my law firm.  I also confirmed that, if and when I leave my law firm's health insurance, I would not be subjected to a Medicare penalty, as long as I promptly enroll in Medicare Parts B and D, or join a Part C plan. 

The problem is, if I was to go on Medicare, I would have to find insurance for the rest of my family, probably through Obamacare. It becomes a cost/benefit analysis: How much would it cost to put together Medicare coverage for me, and alternative health insurance for my family? I assume that it would be possible to stitch together coverage for me and my family, but for now I'm not going to worry about that. Maybe I'll run the numbers at the end of the year and work through the pros and cons, but for now I am grateful that I can continue with the existing United Health Care health insurance that so far has been very good about paying for my care.

I am keenly aware that bladder cancer is the single most expensive cancer to treat on a cost-per-patient average. BCAN's press guide says, "Bladder cancer has a recurrence rate of 50-80 percent and because it requires life-long surveillance, it is the most expensive cancer to treat on a per patient basis." A 2010 article from the Canadian Urology Association Journal confirms: "As measured on the basis of cumulative per patient cost from diagnosis until death, bladder cancer is the most expensive to treat." Just yesterday I received a comment on my prior blog post stating how, for that person, "bladder cancer has been a financial disaster". The cost of my treatment for bladder cancer so far has been over $200,000; not counting the cost of my health insurance premiums, my out-of pocket cost for deductibles and co-pays has been around $2,500. 

I feel fortunate for the fact that my private health insurance has covered my treatments. I am grateful for the ongoing support of my law firm. I'm also fortunate that I listened to my insurance agent more than a decade ago and purchased disability insurance with an income replacement.  I eventually layered my disability coverage with four different policies. The premiums cost several hundred dollars a month, and are now paying out at 100%. Since I paid the premiums with my own post-tax dollars, the benefits are tax free, which is nice. Those payments greatly alleviate what would otherwise be a highly stressful tension of trying to push myself to work to provide for my family, while at the same time trying to prolong my life through different therapies.  I am grateful that I can spend more time with my family during what is likely to be a much shorter life span than I had been anticipating before cancer.

Mets Day 789 - Reshuffling the nest

Last week Chelsea, Josh, and baby Rose moved out of our basement apartment so Chelsea could start her medical residency in Utah. The week before they moved, Jennifer and I cared for Rose 24/7 while Chelsea and Josh went on a well-earned vacation cruise. We loved having our granddaughter with us, but also realized why people in their 50's are not supposed to be new parents. The house seems much quieter with them gone.

Spencer quickly seized the opportunity presented by having the apartment vacant, and moved all his stuff downstairs. He says he's going to be buying his own food and try living on his own while finishing college.  I think it's a great transition for him.

Meanwhile, this past weekend I hosted at our Lake Anna vacation home 12 people from the Potomac Pathways, the intensive outreach program where Spencer works as a peer mentor. I spent all day Saturday on driving the boat while the young adults were tubing, wake boarding, water skiing and tanning. I was sunburned and exhausted by the end of the day, and well worth it. It's a pleasure to be able to help struggling people have good, safe, wholesome fun. 

The last few days of May, we hosted my older brother, his oldest daughter, and her 12 month old son, as they visited the area. I don't get that much time with my brother, as he lives over 2000 miles away, s it was nice to spend some time together. We visited a couple of the Smithsonian museums. (I'm embarrassed to say that the only time I go there is when out-of-town guests are visiting.) 

When I see other people, they comment that I am looking well. My hair has grown back (although it's much curlier), I've gained weight since my last round of chemo, and I appear to have decent energy. In short, to others I don't look like their preconceived notion of how someone who has stage 4 metastatic cancer should look. I hope to keep it that way. Nevertheless, I remain cognizant of my tenuous physical condition, and am mindful and grateful for each day.

Each Monday, I receive an email from BCAN listing all of the recent questions posted on the discussion boards at inspire.com. I review the dozens of questions posted in the past week, and add my thoughts when I have something to contribute.  Recently, a 39 year old woman whose father is dealing with bladder cancer asked:

I was just wondering of anyone else disagreed with the treatment choice of their doctor? If so do we have a say or do we have to go elsewhere???

I replied:

I am a strong advocate of the patient taking charge of his or her care. I read a lot of the medical literature (my background in patent law has helped my understanding), wrote down my questions in advance, frequently recorded my interactions with my doctor so I could listen to them again later, and explored all of my alternatives. I consulted with and continue to be followed by doctors from Hopkins, NIH, GW, Fox Chase, and U. Chicago. I've also consulted by phone and email with doctors from U. Mass. and M.D. Anderson. I feel fortunate to continue to be followed by some of the best BC doctors out there.
I've been Stage IV for more than 2 years, and there are no established therapy regimen -- instead, each patient is treated based upon how the cancer appears to be acting. Having such a team of doctors requires a willingness to take responsibility for your own care, because the doctors don't always agree with each other, and are quick to acknowledge their biases and limitations. For example, when my BC spread to nodes in neck, I had 3 of my doctors recommending salvage chemo, and two telling me it wouldn't do any good. I've appreciated the frank advice from each, and feel that I am managing my care with as much information as possible.
Several of my doctors have told me that I am a highly unusual patient because I read the literature, carefully explore the alternatives and risks, but am not grasping at straws or wishful thinking. My docs tell me that most patients just want their docs to announce the course of treatment and do it. As most readers of these boards know, however, depending upon the staging and co-morbidities of each patient, there are a lot of different BC treatment options from which to choose. In my opinion, it is better to know the options ahead of time instead of having later regrets.
I know the odds are against my long-term survival, have updated my will and advanced medical directive, and have found peace and joy in living one day at a time. In the meantime, I blog about my life with mets BC at http://kwbcancerblog.blogspot.com/. All are welcome to see if there is anything that might be of use to you.