#67: Itching for more, plus an update on Jennifer

In the past month I've noticed an increase in itching on my scalp, torso, and calves. There is no visible rash, but I've found myself absently scratching my chest or scalp. I went to a dermatologist and told her I thought I was having immunotherapy-induced dermal toxicity. The doctor quickly dismissed my concerns and said I was just getting old and that my skin was dry. She gave me a scrip for tub of lotion and told me come back in six months. I left feeling vaguely dissatisfied.

Yesterday I Dr. Maughan and his PA, Lindsay, and told them about my itching and the dermatologist's dismissive response. I also noted how I'd noticed that my bowel movements were looser than usual, which can be another indicator of checkpoint inhibitor overstimulating my T cells. Because neither was more serious than grade 1, and because my labs were all normal, we agreed that I'd still get my infusion of Opdivo while closely monitoring my body for any signs that my body might be reaching its saturation limit.Infusion #67 was unremarkable. Next month I'll have another CT scan before my infusion. <Yawn> I am so far past worrying about any anxiety on the scan results. Having had more than 40 scans has made me a bit blase about any single one.

An update regarding Jennifer: In the past few weeks she's had a number of additional tests and evaluations. Her doctors now believe with greater confidence that there is an organic component to her cognitive impairment. They have formally diagnosed her with dementia, and suspect that it is frontotemporal dementia. She continues to reside at the assisted living memory care center in Layton, and her acuity continues to slowly decline. She finds it hard to focus and frequently cannot remember what just happened. She uses a walker to assist with her mobility, and requires assistance in all of her activities of daily living.

I visit her daily, taking her water-based physical therapy, or to visit the grandkids, or go to church, or just get a treat like a cookie or ice cream. Her stamina is limited, and after a couple of hours she'll be ready to go back and take a nap. I'm glad that she is able to be at a place that treats her with care and compassion, and where she is able to feel safe and comfortable. While she no longer is able to focus on emails or texts, she enjoys getting old school cards and notes from friends and family. She keeps the cards in a large basket next to her recliner, and sometimes will look through them as if seeing them for the first time.

Dementia is a cruel disease, perhaps even more so for the family and friends who see their loved one's mind waste away. I have leaned to copy by simply dropping all expectations, and being grateful for the joys that I can find each day that I can see her. The greater test is on me, I think, for how I will respond, and how well I can continue to choose compassion and empathy. It is not easy, and at times I feel that my reservoir is being drained faster than it can be replenished. I'm continuing to feel my along, trying to do the next right thing while living one day at a time.

Infusion #66 GO NATS!

I'm sitting in the recliner at the Huntsman Cancer Center with 480 ml of nivolumab pumping into my arm. It's been a quiet month, health-wise. As the weather cools, my skin has dried and I've noticed a bit more itching due to my Opdivo-induced dermal toxicity, but it's not even a grade 1 rash. My labs were great, and the knowledge that my last scan was NED has meant that I have not been thinking too much about the fact that I have metastatic cancer.

On the bladder cancer discussion board, a newly diagnosed patient asked how to deal with the constant threat of recurrence. The poster had been diagnosed with non-muscle invasive bladder cancer, and was getting BGC treatments. That's the mildest form of bladder cancer, and the most treatable. Yes, he'll have to be vigilant, but if he does so it is unlikely he's going to die from it. I started to draft a reply telling him to get some perspective and how I've been living with Stage IV for more than 7 years ... then deleted it. It's not my place to lecture other people whose world has been rocked by a cancer diagnosis, even if it's a totally treatable form of cancer. They need to walk their path and gain what they can from it.

A few days ago I was speaking with my brother and sharing how, at age 18, I broke my leg while riding my motorcycle. The forced cessation of most of my activities during my recovery caused me to reevaluate my life and make some fundamental changes for the better. Had I not broken my leg, my life likely would have been much different. I have seen how times of challenge and trial have caused me to try to be a better person. I think my cancer journey likewise has helped me to focus on things that are more important. It also has helped me sharpen my sense of gratitude for the simple things and little joys each day can bring.

Last night I watched the Nationals play game 2 of the World Series against the Astros. After Adam Eaton hit scored in the 7th inning, he bounced through a gauntlet of teammates, plopped down next to Howie Kendrick, and they both pantomimed driving a car, complete with engine sounds and shifting noises. That type of simple joy from grown men while playing a game reminded me of how important it is to keep things in perspective. I know that it's a lot easier to do when you're winning -- as I currently am in my game of cancer whack-a-mole -- and I hope that I can retain that perspective if and when my tumors return and the cold hand of death is upon my shoulder.

GO NATS!

Kidney infection, infusion #65, CT scans, and NED

In early September, I started feeling lethargic. My appetite declined and I was not sleeping well. I was getting chills, wrapping up in blankets even though it was 80 degrees or warmer. I thought that I might have had a heat stroke from a long motorcycle ride on Thursday Sept. 5, so on Friday I rested, sipped water, and didn’t do much. On Saturday Sept 7 I was feeling a bit better, so after no eating for more than 24 hours I decided to refill my tank at Five Guys. Ominously, I could not finish my burger or even get halfway through my fries. I stared at the uneaten food on the table, never previously having seen such an awful sight. I knew than that my condition was serious, perhaps even terminal.  On Sunday I went into InstaCare, where my temperature was 103.7, my pulse was uneven, and there was blood in my urine. While I was waiting for the doctor’s assessment, I started researching on PubMed the symptoms of kidney cancer, as well as reports of renewed urothelial cancer in neobladders (uncommon, happening in less than 3% of patients). Eventually, the ER doctor came out and said that I probably had a kidney infection and that I should start taking an antibiotic while she ran a culture on my urine. I asked her to also test my urine for urothelial cancer, and she said she had no idea how to order that. The next morning I went down to Huntsman Cancer Center and left a urine sample with them with instructions to do a detailed cytology. Over the next few days I learned that my urine was positive for an e-coli infection in my kidneys, and negative for urothelial cancer. The Cipro has succeeded in knocking down the infection, and a couple of days ago I proved to myself that I had fully recovered by downing my entire Five Guys order.

The days are getting shorter and the leaves are changing. Last weekend the mountains got their first snowfall. The ski areas are scheduled to open in about 60 days. I had hoped that I would be able to get the foundation of my house set before the ground freezes, but that looks unlikely now. The issue with the fire marshall apparently has been resolved after I provided my builder with the laws and regulations that showed he was wrong, but we’re still waiting for the building permit to issue. Plus, the cost estimates to build the house have been much higher than expected. The trades have inflated their prices by up to 25% this year because there is such demand and skilled labor is in short supply. Material prices have been padded due to uncertainty about trade tariffs. I am resigned to the fact that I won’t be able to break ground until spring.

This morning I had another CT scan, followed by labs and Opdivo infusion no. 65. Everything was routine: I drank the barium smoothies on schedule, the tech easily accessed my vein, and I was run through the whole CT enchilada – neck, chest, abdomen and pelvis. Following the tech’s advice to flush the radioactive isotopes out of my system quickly, I went to McDonalds and drank 4 liters of Diet Coke along with a sausage and egg McMuffin or two. I returned for my labs and visit with Lindsay, the nurse practitioner who was covering for Dr. Maughan this morning. She seemed nonplussed by my recent kidney infection and didn’t think that there was any connection between that and my ongoing treatments for metastatic bladder cancer.

My CT scans showed no new metastatic growth in my neck, chest, or abdomen. The cluster of nodes in my neck that were the target of the radiation in June have shrunk a bit, from 13x11 mm to 11x6 mm. Nothing lit up in the scans, so there is "no evidence of pathologic lymphadenopathy."  NED (no evidence of disease) is a good place to be. It's been a year and a half since I've had such a clean scan. I hope there will be many more.

As I sat in the infusion chair and had the nivolumab pushed into my vein, I looked around at so many other patients who were getting chemotherapy or immunotherapy. Many seemed apprehensive, accompanied by family members who were uncertain how to act. I thought back to those times I was in that position – my first GemCis chemo in 2012; my dose dense MVAC chemo in 2013; and the first few infusions of nivolumab in early 2015 -- and am glad that they are in the past. I feel fortunate that I can see my infusions as routine: an ongoing prophylaxis against a chronic disease. As the events earlier this month reminded me, I am always one event away from being confronted with renewed metastatic growth that plunges me into uncertain treatment options with a low likelihood of success. But I don’t live my life worrying about such eventualities. I live each day as best I can, grateful to God when I lay down to sleep, grateful when I awake.

For there is much to be grateful for. This coming week I will officiate the wedding of my daughter Kirsten, and her fiance Jason – a rare honor and opportunity. I have been closely studying great examples of wedding officiants, including Peter Cook and Rowan Atkinson, and diligently preparing for a once in a lifetime opportunity.

Infusion 64, auctions and a birthday

Since my last infusion at the end of July, I’ve kept busy with making decisions regarding the building materials in the house I’m planning to build. In the past week, I found out why Weber County has not yet issued the building permit: the fire marshall, who is required to sign off on the plans for each house built in the county, has decided that every house not adjacent to a fire hydrant should have a sprinkler system. This is even though the state legislature has specifically said that residential single family homes under 10,000 sf do not need sprinkler systems. The fire marshall apparently has decided to make my proposed house (under 4,000 sf, including the basement) a test case for his authority. Just my luck to run into an overzealous officious intermeddler.

I also have been shopping for snowplows, since my driveway will be about 300 yards long and I don’t feel like shoveling it by hand. New plows for my truck top $6000, so I’ve been looking for used plows. I came across an auction in Denver that had several plows, and bought one for $1500 that happened to have a 30 year old truck attached to it. There was also a bunch of solar panels for sale at the same auction, so I bought a bunch for less than $20 per panel. I figure I’ll put them on the house. Needing a way to get them all from Denver to Utah, I also bought a used trailer. I took an early morning flight to Denver and was picked up by my daughter’s fiancé who drove me to the auction site where I picked up my purchases. Less than a mile up I-25 from the auction site, I blew a trailer tire. Of course, there was no jack and no spare. I left the trailer on the side of the highway, drove to a Walmart to get a jack and lug wrench, drove back, jacked up the trailer and removed the tire. I eventually found a suitable replacement tire, got it mounted, returned and got it on the trailer. 

The blown trailer tire

I figured out that the load on the trailer was heavier than the old truck was able to comfortably pull, so I decided to leave the trailer in Ft. Collins and send one of my boys back for it later. It was the right call – driving across Wyoming, I had a blowout on the truck. Of course there was no spare. Apparently the truck had been sitting for a while and the tires had dry rot. It took 3 hours to get roadside service. The mobile mechanic brought a used tire of the correct size and mounted it on the side of I-80. He also brought out another wheel and tire for a spare, which was fortuitous because 125 miles farther west I had another blowout. 

Blown tire #2

Blown tire #3

I staggered into Huntsville at midnight, having repented of my foolishness of buying stuff at auction without inspecting it.

Or so I thought. For a while been looking for a farm tractor with a front end loader that I could use around the home site, and my son-in-law could use on his 15 acres. Last week at another auction in California’s Central Valley, a Massey Fergeson 398 was available, and I snapped it up for $5500. The next day Spencer was due to leave for an young person’s AA convention in Las Vegas, so I rented a heavy-duty flatbed trailer, hooked it to the F350, and sent him on his way. After the convention was over, he drove to the auction site about an hour north of Bakersfield, picked up the tractor and headed back to Utah. Just north of Edwards AFB in the Mojave Desert of California, the trailer axle snapped in half. 

Aw snap!

 Apparently it had a stress crack in it from previous renters overloading it, and it just gave way. The rental place in Ogden had no idea what to do – “Can you find someone to fix it?” was their solution – so I worked the phones and finally found another franchise manager who took the initiative to get a replacement trailer delivered, the tractor offloaded and reloaded, and get Spencer back on his way. The delay was only 24 hours, but Spencer learned that there’s nothing to do in Mojave other than sweat. 

I met Spencer in SLC and took over driving the trailer and tractor home. Of course, halfway back to Huntsville the tread separated from one of the tires on the trailer -- but at least it didn't blow out! I still had to change it, however. Changing tires on the side of an interstate highway is not fun. But once I got the trailer home, Josh and I could start having fun with our new toy.

In the past week I celebrated by 57^th birthday by having dinner with Jennifer, Chelsea, Josh, Spencer, Garrett, and my brother and sister-in-law. I reflected on how it’s been nearly 8 years since I was diagnosed. When my mets were discovered in in April 2012, the odds of living even five more years was less than 5%. With the advent of immunotherapy, I and thousands of other patients with metastatic cancer have rewritten the statistical odds by surviving far longer than anyone could have predicted.

Today I’m sitting at the Huntsman Cancer Center’s Farmington satellite location and am getting my 64th infusion of nivolumab. The nurse who did my labs (no blown veins this time!) sang praises of how Opdivo and other checkpoint inhibitors have extended the lives of so many patients. I was struck by the thought of how nice it must be for providers to know that the therapies they are providing have a far greater likelihood of helping their patients without the toxic side effects of chemotherapy.

Dr Maughan and I chatted about updates from this month’s BCAN Think Tank (which I did not attend), and how combination therapies continue to be the most promising next line of treatment if and when my cancer progresses. I look at these data not with any dread of morbidity, but simply as gathering information about eventualities that likely will come to pass. I can look at my cancer with objectivity, knowing that I do not control the course of my prognosis. Maybe my continuing with my immunotherapy treatments will keep the beast at bay, but maybe it won’t. There is not enough data available for informed speculation, so I simply learn what I can and continue to live one day at a time.

I scheduled my visits through the end of the year and smiled at the assumption that things would continue on as they have been. Maybe they will, maybe they won’t. It’s part of the mystery of life that makes it worth living.

Another infusion, and other adventures

Last week I had infusion #63. Except for the tech and nurse blowing three veins before finally getting a return, it was another uneventful day. I've got s couple of purple bruises on my arms as reminders, however. At this point I'm inured to minor things like blown veins or longer waits or other things outside of my control. I believe that almost all people doing health care are trying to do their best, but that no one is perfect all the time. So I roll with it.

Speaking of rolling with it, last week I drove Spencer out to the east end of the Uinta Highline trail where he would embark on a 7 or 8 day hike across the east-west spine of that mountain range:

This map is from alltrails.com, which Spencer uses as one of his guides for hiking.

So we loaded my Fatboy into the truck bed and drove about 4 hours to the trailhead a few miles south of Flaming Gorge Dam. After I dropped him off I drove to the west end of the trail head on Mirror Lake Highway and parked the truck at my in-law's camp site. It was pouring rain as I unloaded the Harley. Fortunately I had brought my leathers and gloves, but unfortunately I had brought by half helmet and goggles instead of my 3/4 helmet with a face shield. I was glad I'd put a windshield on my bike, but I still stopped in Evanston and bought a balaclava. Soaking summer rains in Utah are rare -- it is a desert, after all -- and I think it's the only rainy day we've had so far this summer. But even a rainy day on a motorcycle is a good day, as long as you've got the right gear. (Spencer unfortunately got some bad water on his first day, became violently ill, backtracked and hitchhiked to Vernal and spent several days recovering. He's back on the trail now. He'll blog about his hike here.)

Regarding my plans to build a small house, the county finally certified that the water in the well that we'd had drilled was safe to drink. The same day, the engineer finished work on the structural load calculations for the building plans. That meant I could apply for a building permit, which is now pending. Here's the south elevation:

Here's the main floor plan:

I've taken care to design the house so Jennifer may be able to live there, if she is able, with everything on one floor. I've eliminated all entry steps, thresholds, and possible obstacles. All doors and baths on the main floor and basement are wheelchair accessible. The stairs to the basement and second floor can be locked from each floor, and externally accessed.  The exterior doors can be electronically controlled for access and elopement control. I hope that I will be able to enjoy it, along with my descendants. I enjoy the building process -- the conception, design, materials selection, and overseeing the execution -- as long as I'm not the one swinging the hammer.

No changes in my last CT; infusion #62

Last week I had another CT scan, which means 12 weeks had passed since my last one. Since I was diagnosed with bladder cancer in November 2011, I don't think I've ever gone more than 12 weeks without having a CT or PET scan, and sometimes I've had them far more often. I think I'm approaching 40 scans. When I get to 50 I'm told they'll give me a commemorative pin made out of depleted U235. Dr. Maughan looked at my scans and said it appeared there was no significant changes from 12 weeks ago. Good news in that there's no new mets. My persistent tumor at the base of my neck remains essentially unchanged in size:

Slight interval decreased size of the lymph node conglomerate within the left superior mediastinum, measuring approximately 1.3 x 1.1 x 2.5 cm (AP, transverse, craniocaudal. Additional scattered subcentimeter nodes are present. These do not demonstrate aggressive features.

The obvious question was, why the radiation didn't seem to have reduced the size of the tumor. Dr. Maughan said that sometimes radiation can cause inflammation, and that a scan a couple of months after radiation can give a better reading. Or it just might be that my tumor is radiation resistant. So the bad news is that there doesn't seem to be an immediate benefit to the radiation. But since it hasn't caused any side effects, and I got a nifty mask and some good stories as a souvenir, no harm done. And maybe it will have some therapeutic effect down the road. I knew that radiation was never intended to be curative, but to instead turn that persistent tumor into an inert lump of tissue.

Opdivo infusion #62 was routine. Doing infusions every 4 weeks instead of every two weeks (as I had from 2015-18) makes it seem even less of a big deal. Since I'm having no side effects (except the occasion minor rash), I'll keep riding the nivolumab horse until someone comes up with a better idea.

Speaking of riding, I found that I've been missing motorcycle riding. I sold my last Harley in 2017.  The day after my scan and infusion, I bought a used Harley FLSTFI Softail Fatboy with some sweet sounding V&H big radius 2-into-2's. I've already added a Corbin solo seat with backrest and HD hard bags. I've been riding it daily around Northern Utah's mountain roads. On July 2 I rode from Huntsville up to Monte Christo at around 9000 feet, and was having so much fun I kept going all the way to Woodruff, Based on the number of bugs in my teeth after each ride, I must be having a good time.

Two Fatboys

Nuke the whale

On Monday June 3 I drove to the Huntsman Cancer Institute in Salt Lake City for a “pseudo CT” in preparation for my radiotherapy. A pseudo CT consisted of my laying bare chested face up on the table that slides into a CT machine and getting marked for radiotherapy. The first part of marking consisted of immobilizing me. A tech shaped a pillow to cradle my head. The pillow was filled what felt like small silica beads. When the pillow was perfectly shaped, the tech injected a quick-setting gel into the pillow which caused it to lock into shape.

After the pillow had hardened, two techs brought a warm mesh fabric and pressed it all over my face, shaping it around my eye sockets, nose, chin, cheeks, ears, and jaw. I had to hold very still while the mask dried. I could breathe through the mesh, and with some effort could blink my eyes, but could not focus on anything. Nor could I lick my lips, which I found was the most difficult part of wearing the mask. The hardened mask was attached to the pillow. My head and neck were totally immobilized.

Good evening Clarice

Once I was locked in place, the techs drew four small circles on my chest: one on each shoulder, one at the base of my neck, and one above the sternum. They also made four marks on the mask. They then aligned lasers within each of those circles. Where each laser instersected, the tech marked a single point. A brief CT scan allowed the techs to map my supraclavicular metastatic tumor in relation to those points. Once the location marks were confirmed, a tech returned with a tattoo pen. She inked four points on my skin, which would serve as a permanent reference point for each radiation treatment. Each point was smaller than a mole, and barely visible from a few feet away.

With that, the preparatory portion of my radiation therapy was done. I was told that on the following week I would have three sessions, receiving 10 Gy of radiotherapy in each session. I was told that I should feel no of very little adverse effects. Driving myself to and from each session was perfectly fine. I scheduled each of the sessions so that I would arrive after the morning rush hour (although Salt Lake’s traffic is nothing compared to the DC area) and get out before the afternoon rush.

My first session was on June 10. I was told that the techs would lock me into position on the table, take a quick CT scan, and review the radiation plan with the radiologist. With the mask on, my other senses were more attuned and I could feel the CT scan as it vibrated through my neck and chest. After the CT scan was over, I relaxed my grip on the handles and moved my hand. I tech immediately came into the room and told me that, because I had moved, they would have to do another CT scan. I mumbled an apology through my mask and was about to say that no one told me not to move, but thought better of it as I realized that was the whole point of immobilizing me.

Don't move or we'll nuke you

I assume that Dr. Lloyd approved the radiation plan, because after a few minutes the machine started whirring and rotating. The SBRT (stereotactic body radiation therapy) machine has the ability to shape and target the gamma beam to focus only on my tumor and not any other part of my body. The machine slowly circled my body as it irradiated my tumor. I could feel the warmth of the machine as it circled, but of course could not actually see the thing through my mask. I hope this actually works I thought, preparing to spend a half hour or so on the table. But after less than three minutes, I was done. That wasn’t so bad, I thought. It’s not much different that a dry CT scan. Less than 45 minutes after arriving, I was on my way.

I have two other sessions this week. My next CT scan with contrast is scheduled for June 27. With luck, my persistent tumor in my upper chest should be gone. Of course, I don’t expect to be cured by this radiation – all we’re trying to do is nuke the biggest and most durable tumor. I understand that the nature of my metastatic cancer means that I likely have microscopic deposits of cancer throughout my lymphatic system. All we’re doing is whacking the most visible area of cancer. Eventually, my mets will pop up somewhere else, and the game of cancer whack-a-mole will continue. Meanwhile, I’ll continue with my immunotherapy until someone has a better idea.