CR 658: Another good CT scan

Last week I had another CT scan and Hopkins visit. Ever since I was diagnosed in late 2011, I’ve had CT scans every three months (and sometimes more often). When I scheduled the scan for 8:30 am, I forgot that Kaiser wanted me to drink one bottle of barium contrast 4 hours in advance, and another 2 hours in advance. So I set alarm for 4:30 am, stumbled downstairs and chugged a radioactive banana smoothie. I couldn’t get back to sleep, so I climbed into the hot tub and watched the sky grow lighter with the sunrise. I was struck with a sense of gratitude for the day, and gave thanks to God for being alive.

The scan was routine – no blown veins or exploding connections – and I following the advice of the tech to drink lots of fluids to wash out the contrast, I went to McDonalds for breakfast and 4 liters of Diet Coke. In the afternoon, an oncologist nurse called to tell me that the scan showed no changes from my last scan in January, and no evidence of metastatic activity. Another prayer of thanks.

Early in my cancer journey, I found myself thinking more about a scan in the couple of weeks before it happened. Some patients get so worked up about scans that they have a hard time thinking of anything else. “Scanxiety” is a real thing. I learned to get over it by accepting that I had no control over the course of my cancer, and putting my trust in God. It also helped to realize that scans are imprecise and retrospective: to the extent that they show anything, it’s what has already happened in your body. Getting worried about what’s already happened is silly.

These days, I go into my scans with zero expectations. I have no idea if it will show that my cancer is inert, or growing, or doing the polka. There is no data that I can reference to develop a set of expectations of how long (or short) my current remission will last. In the absence of data, I refuse to speculate, so I mostly don’t think about it. In that sense, my cancer journey currently is an abstraction; a thought exercise. At some point in the future, it is almost certain to smash back into the forefront, grab me by the throat and shake me around. When that time comes, there likely will be nothing I can do about it. But until then, I’m living my life as best I can, grateful for each day.

On Thursday, I went up to Hopkins to check in with Dr. Hahn. I brought a copy of my scans, and we looked at them together. The supraclavicular node where my distant mets first showed up was visible on the scan, but inert. Dr. Hahn said that the scan seemed to slice through it just right to make it show up on the screen, but there was nothing going on with it that he could see. The sites of all of my other tumors were normal.

I asked whether there was any new data on durability. He said that aside from the Bristol Myers release that accompanied the formal approval of Opdivo for metastatic bladder cancer in February (which I had previously blogged about), nothing else had been published in the past 3 months. Bristol Myers continues to follow patients who have had partial or complete responses and stop taking the drug. The company will typically release additional data in conjunction with meetings of oncologists in the US or Europe, such as the Spring ASCO meeting in late May. I’ll be watching for those data, since I’ll be included in the data set. 

I told Dr. Hahn how I still had occasional itching to the scalp, and sometimes around the neck and backs of my calves. I knew that itching was a sign of dermal toxicity, a known side effect of Opdivo in some patients. I asked what the data showed for how long that lasted after patients stopped taking the drug. Dr. Hahn replied that the data was sketchy and incomplete. Some patients saw the itching resolve soon after stopping the drug. Others had it last longer. In a few patients, it had yet to resolve, suggesting that it might be permanent. In my case, it’s very minor – grade 1 at most – and it comes and goes. Sometimes I’ll find myself absently scratching my head or neck. When I get into the hot tub, sometimes the backs of my lower legs sometimes itch. And my forehead and cheeks sometimes show a mild rash. Dr. Hahn suggested that if I find the itching to be problematic, I should consult a dermatologist for a topical cream. Alternatively, I might try Benadryl or Claritin. I’ll monitor it and see how it goes.

After meeting with Dr. Hahn, I chatted with Liz Raymond, a Hopkins employee who is helping launch the Greenberg Bladder Cancer Institute. She invited me to a luncheon at Hopkins on Friday May 19 where Dr. Hahn, Dr. Bivilaqua, Dr. McConkey, and others will be talking about new developments in bladder cancer treatment and the GBCI. Liz said that I might be asked to take a few minutes and share some of my experiences. If you’re in the area and interested, come on by.

Join me for the 2017 BCAN Walk: May 6, 2017

The 2017 fundraising walk sponsored by the Bladder Cancer Awareness Network is on Saturday, May 6, at 9 am, starting at the Jefferson Memorial. Here is a link to the Team KBros fundraising page. Please make a donation and, if you are in the DC area, consider joining me and my family and friends for the walk. See you there!

A history of our home

Early in my cancer journey, Jennifer and I had seriously considered downsizing, bluntly asking ourselves whether it would be better to get that done before my likely death in a few months or maybe a year or two. We decided to stay put, minimizing the disruption to our family and focusing on spending time with each other.

In the past year, we tentatively reconciled ourselves to the unexpected fact that I am in an immunotherapy-induced remission. With no scientific basis to know or even guess how long this remission might last, we've continued to focus on our family. Last summer Garrett graduated from high school, then accepted a two-year missionary commitment from our church. After that is done, he'll likely attend Brigham Young University. In December, Spencer graduated from George Mason University with a multidisciplinary degree in biology, psychology, and social work. While he considers his options for further studies, in early March he set out to thru-hike all 2200 miles of the Appalachian Trail. This May, Kirsten will graduate from Mason with a degree in Social Work, and has committed to attend the Masters of Social Work program at the University of Denver. And Chelsea has accepted an offer to join the staff of McKay Dee Hospital in Ogden, Utah.

Now that our nest is empty, we have returned to the idea of downsizing. Our family home now is too large for our needs. The center of gravity of our children (and grandchildren) is in the West. There is no economic need for us to stay in the DC area. Taxes continue to rise, traffic continues to get worse, and we're growing weary of maintaining such a large place. After our return from our recent trip to Machu Picchu and the Galapagos, we decided to begin preparing our family home to be put on the market.

Last week, our house was listed in the MLS. More photos and a video is located here. As we have cleaned and cleared out house, I have reflected on our history in our family home. In 1997, after I was made a partner at my law firm and had a bit more job security, Jennifer and I considered whether we should build our dream house. We decided to do so, and spent more than a year looking for a lot that met our criteria: two or more acres bordering parkland or protected area, sloping down to a stream, not on a busy road, less than 30 minutes from downtown DC, in a good school district, and in our price range. Finding nothing in Montgomery County Maryland where we then lived, we crossed the Potomac and looked for land in the Old Dominion.

Eventually, we found Lot 11A of the Offutt Home Tract. We learned that it shares in the story of the colonization of northern Virginia. In 1608, Captain John Smith of Jamestown explored the Potomac River to Little Falls above the mouth of Pimmit Run. By the end of the 1600s, a few English settlers had ventured into what is current-day Great Falls and made land claims, even though it was then was considered the hostile frontier due to raids from the Iroquois. In 1722, Spottiswood’s Treaty in Albany caused the Iroquois to withdraw beyond the Blue Ridge, and lands adjacent to the upper Potomac above Little Falls were open for settlement and immigration.  By then, the English Crown had issued large grants of thousands of acres along the Upper Potomac between Great and Little Falls.

The land on which our home sits was surveyed in 1730 for Lewis Ellzey, Fairfax County’s first Sherriff, a Captain in the Virginia Militia, a county justice, and church vestryman. That survey covered a 544-acre tract in Great Falls on the north side of Difficult Run near the first large branch. Ellzey acquired the parcel for investment; the only house that was shown on the 1730 plat was a residence built by a planter named Thomas Simmons that eventually became known as “Four Stairs”, and still stands at 840 Leigh Mill Road. In 1742 Ellzey deeded the lower 300 acres of his grant to Simmons. Simmons cleared the land around Captain Hickory Run and built a grist mill near the confluence with Difficult Run. The foundations of the mill are visible below the house at 991 Millwood Lane. The remains of the mill race can be seen around Captain Hickory Run, including at the bottom of our property.

Simmons worked the land until around the time of the American Revolution. The tract changed hands several times until it was purchased by Captain John Jackson in 1796. Captain Jackson was a Revolutionary War militia leader, and held a lifetime appointment as a Fairfax County Justice of the Peace. The Jacksons renovated and added to Four Stairs, and the 300 acres eventually was subdivided between the Jackson descendants. One of Jackson’s granddaughters married Joshua Offutt, and eventually their portion of the land became the Offutt Home Tract. One of Offutt’s descendants was Judge Oliver Gasch, who owned Lot 11A, which is 4.6 acres at the end of a private road backing to a Virginia Resource Protected Area. Judge Gasch was born in 1906, and served as a federal judge in the District of Columbia for more than 30 years. He sold lot 11A to Jennifer and me in February 1999, just a few months before he passed away.

We designed our family home with respect for the history of the area. Taking the lay of the land into account, I prepared the floor plans and elevations using a computer assisted design program. Once we were satisfied with our plans, we commissioned Woodhouse Post & Beam in Mansfield Pennsylvania to create a timber frame structure, using native Eastern White Pine. Woodhouse's crew assembled the frame using historic post and beam, mortise and tenon construction, with oak connecting pegs. No nails were used in building the frame. The wood was “green” when built, and the slight shrinkage during the drying process causes the frame to be tight, while developing natural “checking” in in the timbers. Woodhouse enclosed the frame in SIPs - Structural Insulated Panels - on all exterior walls and ceilings. 

Jennifer selected all of the interior finishings and paint colors. Our family home has 7 bedrooms, 5 full baths and two half baths, and nearly 9000 square feet. It has a large covered front porch and rear deck. We added a large in-ground heated swimming pool with built-in spa, screened post and beam gazebo, large patio and fire pit. The exterior features local stone and durable concrete fiber James Hardie shingle siding. We included hot water radiant heat in all three floors, using concrete as a thermal mass to hold and distribute the heat. Six different zones ensure that the warmth slowly rises from the floors in desired locations. We have a private spa located adjacent to master bedroom that we use daily. The four kids bedroom each have large lofts. The fully finished basement has a second master suite, full kitchen, as well as a rec room, art studio/craft room, and work shop. We recently replaced both HVAC systems, the dishwashers, and had the entire house repainted. According to our agent, it shows like a model home. 

The most time consuming task was sorting and purging our stuff. We have not had a long distance move in nearly 30 years, and inertia is a powerful force when if comes to stuff. We found that I am far less sentimental about stuff than Jennifer. If something has no current use and I am unlikely to use it in the future, then I'm happy to get rid of it. Jennifer imbues objects with sentimental value, and found it harder to separate the emotions from the object. We ended up selling (on Craigslist), giving away (to friends and church members), or donating lots of stuff to charities. The pictures show a minimal amount of furnishings that we kept for showing. Jennifer applied her artistic eye to stage the house, getting a couple of bedspreads and throw pillows for splashes of colors.

We now have the joy of keeping our home as immaculate as possible until a buyer is found. I don't like fearing my own house, not able to use the towels or leave my clothes on the floor or the bed unmade. I'm glad I'm still alive to suffer through this.