Another year, another scan

 It’s hard to believe that a year has passed since my last scan. Much has happened since then: 

(1) My oncologist at Huntsman Cancer Center, Ben Maughan, accepted a position at UT Austin as head of GU oncology. Maybe I’ll find out whether Huntsman has assigned another oncologist to my case. Hopefully, I’ll just stick with Ben’s PA, which would mean that my scans are negative and I don’t need to talk with a doctor. The preliminary reading of the scans didn’t show any metastatic activity, so unless the radiologist finds something unexpected, I’ll wait another year for my next set of scans. 

(2) I completed my 6 years of service as a patient advocate for the Bladder Cancer Task Force, a part of NIH’s National Cancer Institute, just before Trump and Musk and Kennedy started gutting NIH and arbitrarily killing research, aborting clinical trials that were years in study, and offering buyouts or layoffs will all the subtlety of a guillotine. The absolute idiocy and shortsightedness from the Hate House at 1600 Pennsylvania Ave is astounding. May the idiots responsible for this Reign of Terror end the same way as did Robespierre. Meanwhile, I still consult on an ad hoc basis for non-governmental research institutions and try to keep current on the latest bladder cancer therapies. 

(3) In non-cancer health news, after my left hip started aching and x-rays showed arthritic decay, an orthopedist suggested I try semaglutide and shed some weight, so I did. I’m down over 60 pounds and at times feel like Ronald Reagan in King’s Row: “Where’s the rest of me?” I think I’ve plateaued at around 205-215 pounds, and wonder if I stop taking this stuff, will the rest of me magically reappear.  I’m keeping my XXL Harley Shirts just in case. 

Meanwhile, since I couldn’t lay on my left side to sleep due to my hip pain,I decided that I might as well try to break my addiction to Ambien  I’d been taking continuous release Ambien since 2012, when the leaking from my neobladder would jolt me awake.  The guidelines say not to take it for more than 6 weeks, but my doctors saw that I had terminal cancer, shrugged their shoulders and said what the hell and kept renewing my prescriptions. Now that it looked like I might not die prematurely from metastatic cancer, I started asking what it would take to stop taking Ambien.  I learned that Ambien is harder to stop than heroin, alcohol, or at videos on Reddit.  Ambien retires the brain, and it takes up to 18 months of being off the drug until the brain can repair itself.  I’m now 12 months in and sleep is still inconsistent and elusive.

While working with the University of Utah sleep center, the doctor noted that my blood oxygen level was drooping more than 3% 20+ times per hour each night. She recommended CPAP, but also noted my resting pulse rate was 35.  She sent me to urgent care for an EKG.  Ten minutes later I was on my way to the Emergency Room.  Apparently I had a Mobitz Type II block in my heart, which meant that the bottom chamber of my heart was contracting less than half the time as my upper chamber.  Instead of going to a Hawaii as scheduled, I had a pacemaker installed. The cardiologist told me that the pacemaker likely would resolve my low blood oxygen levels, and sure enough it did. No CPAP for me.  Yay!

And if that wasn’t enough, a month after I got my pacemaker, I had a left hip replacement. I immediately was pain-free. No more taking stairs one step up with both feet, resting, then taking the next step. No more pain when trying to put on my socks. No more pain when trying to sleep in my left side. Compared to my left shoulder replacement in 2024, recovery was a breeze. I used a walker the day of my surgery, then never touched it again. I used a cane for 3 days, then put it away. I can now walk up and down hills without pain, can jog and even run (for short distances). I’m looking forward to skiing, which I have not done for 2 years. Hopefully this winter will have better snow than last year.

(4) Last summer, Lindsay and I completed our remodel of a 100 year old house in Sugar House SLC, and I sold the split level in Huntsville.  Slade’s moved from Huntsville to Missouri last May so my time in Ogden Valley is over. 

(5) Despite my physical limitations, I was able to do a good bit of traveling.  Lindsay and I spent the month of October in Italy and Greece, spending the first week in the western lake region (Orta, Maggiore, Como), then meeting my daughter Kirsten and son-in-law Jason for 10 days in Tuscany. After they returned home, we relaxed at a spa, then saw it was going to rain across Italy for the next 10 days, so we flew to Crete and soaked up the sun. Getting a pacemaker derailed our planned trip to Hawaii in February, so in May we spent 12 days in the ABC Islands (Aruba and Curaçao). We’re planning a trip to France for all of July, focusing on Normandy with a week in Flanders and a few days in Paris at the end. Spencer will join us for the first 10 days.  

(6) Kirsten gave birth to her first child in April, so now I am blessed with nine grandchildren. It’s wonderful to see the circle of life continue. I remember wondering when I was first diagnosed with metastatic cancer in 2012 whether I would see any of my grandchildren. Now that my current remission seems to be durable (six years this month!), I look forward to many happy years of being a grandpa.  

Five Years of Remission

 On Thursday I had another set of CT scans (#60 for those keeping count). Today all the readings were posted, and I remain cancer-free. The last time I had any evidence of disease was five years ago, in June 2020, when I received radiation therapy for a persistent tumor. Five years without evidence of disease is a common measurement of being cured of many types of cancers -- but not metastatic bladder cancer. That's because, prior to immunotherapy, very few met BC patients managed to hit the five year mark. And even now, seven years after the first immunotherapy drugs were approved, there are relatively few mets BC patients who can claim five years with no evidence of disease. Dr. Maughan, my oncologist, said that I am the data. There is insufficient evidence to guide therapeutic decisions in my circumstances. The main question was whether to stick with semi-annual scans, or switch to annual scans. We decided to split the baby and schedule the next set of scans a year from now, but also schedule a six month check-in to see if I wanted an earlier scan. 

More challenging, and less clear, is the question of whether I can legitimately consider myself cured of cancer. "Cure" is a layperson term that oncologists don't like to use, because it is maddeningly imprecise. I've been free of metastatic disease for five years. But there is no statistical data to inform anyone whether someone who has had metastatic bladder cancer but has not had symptoms for five years can say that the odds of recurrence are so low that the likelihood or recurrence is negligible. So am I cured? No one knows. 

Over the past few years, I have gradually learned to change my mindset from waiting to die to learning to embrace life. I no longer am expecting to die soon, and that shift has been revelatory. An important aspect of that shift has been my relationship with Lindsay, a long-time friend of Jennifer who has been keeping me company. I have completed a remodel of a 95 year old house in the Sugar House area of Salt Lake City, and have put my Huntsville house on the market. Chelsea and her family, who lived next door to me in Huntsville, have moved to rural Missouri. I feel that I am embarking on a new chapter of my life. 

Now that my cancer has been sorted (for now), I have been dealing with more mundane health issues. Last summer I had a total shoulder replacement due to severe arthritic decay. Soon after completing my physical therapy for that, my left hip started hurting. An x-ray showed moderate arthritic degradation of that joint, so I got a sonogram-guided steroid injection into the capsicum around the ball of the tibia and the pelvis. I also started physical therapy and immediately overstressed my left quadriceps, giving me a grade 2 muscle strain that took more than three months to resolve. I needed to use a cane for more than a month and am only now beginning to walk normally. I ended up skiing only once, then turned in my season pass for a partial refund. 

Perhaps a more telling measure of my willingness to look to the future is the fact that I have resumed going to the dentist. I had quit paying attention to my dental health for years, figuring that since I was going to die soon, I didn't need to worry about getting new holes drilled into my head. Avoiding dentists was one of the few silver linings to my cancer cloud. Now that I'm getting root canals and cavities filled, I must be on the road to a long and happy life.

It's been a while

 I've been puttering along since my last scan in June. On July 5 I had a total left shoulder replacement. The orthopedist described to ball on my humerus as looking like a rotted piece of cauliflower, while a marble-sized lump (1.2 cm) rolling around between the bone and the rotator cuff and occasionally getting stuck. He severed the muscle on the top of my shoulder, cut off the rotted bone, glued and screwed in a new ball, cleaned up my rotator cuff, and stitched the muscle back together. I woke up and for the first time in years felt no pain in my shoulder. Amazing! The recovery was awkward but straightforward - wear a sling 24/7 for a month or so, then start rehab. I'm told I should plan to do PT for about a year to get my strength back. I've been cleared to ski and am generally happy with my progress. 

Recently, I've noticed gross hematuria -- blood in my urine. When I first saw that back in November 2011 it was the harbinger of my bladder cancer diagnosis. Since I had my neobladder installed, I've had visible blood in my urine every couple of years. I had another test run and it confirmed "WBC Clumps." Maybe it's an infection, maybe it's nothing. I'll let my doctor figure it out.

Today I went in for another round of CT scans. It's been four and a half years since I started this current remission -- my fourth -- and so far my luck is holding. Although my chest scan reading has not been posted, my pelvis, abdomen, and neck scans showed no evidence of metastatic disease. My next scans will be in June 2025, which will be the five year mark for being cancer free. After that, assuming all is well, I'll probably shift to annual scans for the rest of my life. It's amazing to think that I've been at this for 13 years since I was first diagnosed with bladder cancer.

There are some down sides to surviving, however. I've had to go to the dentist several times after not going for more than a decade (because I was going to die, so why go?). I decided to cancel two $500,000  term life insurance policies that I bought more than 20 years ago because the annual cost to renew was about $15,000 each and increasing by about 20% per year. And I still need to figure out what I'm going to do when I grow up.

Scan 58: Still NED, but needing a new shoulder

My semi-annual CT scans on Thursday were negative for metastatic disease ("No Evidence of Disease"). I like NED. My current remission turns 4 years old this month. Let's hope it continues for many more.

My left shoulder, however, has decided that it's done with me. I've been getting cortisone injections for 5 or 6 years, but those stopped working earlier this year. I have constant low-grade pain in my left shoulder, and moving it feels like my clutch has gone out and I'm grinding gears. I'd held off on doing anything more about it because, you know, I was going to die soon from cancer and so why subject myself to a shoulder replacement. But as it now seems that I'm not going to die in the near future, I've decided to do something about my unfunny humerus. I had some x-rays, consulted with a couple of orthopedists and was told that it was bone-on-bone, and it's only going to get worse. So I had a shoulder CT scan done when I got my others done, and the radiologist found

Severe glenohumeral osteoarthritis with bone-on-bone apposition, prominent marginal osteophytes, mild subchondral cystic changes and sclerosis. Posterior decentering of the humeral head with chronic posterior glenohumeral osseous remodeling. Multiple intra-articular ossific bodies, the largest which measures up to 12 mm in the subscapularis recess.

The good news is that my rotator cuff seems ok. I had an MRI yesterday to give further clarity, and was reminded how much I hate being stuffed in an MRI tube. I'm scheduled for a shoulder replacement on July 5. It's a strange way to celebrate my turning the corner on a durable remission, but what the hell. I'm still not going to see the dentist, however. I'll need a lot longer remission before I'm prepared to do that.

NCI Patient Advocate Seminar and Durability Data

On Friday May 10 I attended a Patient Advocate seminar at the Nation Cancer Institute in Bethesda Maryland. The seminar was to train new patient advocate volunteers, who sit on committees or task forces and help review clinical trial proposals. I, along with two other experienced patient advocates, were invited to share our experiences. Throughout the day we old-timers chimed in with our thoughts, then we wrapped up the conference with a panel. I was the mop-up guy since the moderator had to leave early. It was a good experience to meet with a mentor the volunteers who had experienced cancers, either themselves or as a caregiver, and who were willing to help remind clinicians and researchers about the person on the pointy end of the needle. 

The keynote presentation was by Dr. Stephanie Goff, a senior research physician in NCI's Center for Cancer Research. Her presentation was on immunotherapy for cancer, the when and the why. With Dr. Goff's permission, I am including her slide deck in this blog post. Her first four slides set the stage for using immunotherapy to treat cancer:

Dr. Goff's presentation focused on a subject that is of particular interest to me: how immunotherapy has increased "the tail of the curve" and helped raise the number of long-term survivors:

These charts, called Kaplan-Meier curves, graphically illustrate how long patients live after being diagnosed with various types of cancers. For example, when I was diagnosed in 2011, a Kaplan-Meier curve for metastatic bladder cancer patients between 2000-10 showed that 80% had died within two years, and 95% had died within 5 years. The chart ended at 6.5 years, suggesting that no one in that study had lived longer than that. I've learned that the focus of modern cancer research and treatment is to extend life -- to "raise the curve" -- instead of an audacious goal of "curing" everyone with one treatment. 

Dr. Goff's presentation covered the development of immunotherapy therapies:

I was astonished to hear Dr. Goff explain that there was reported data for certain cancers that had been treated with immunotherapy which showed that there is a subgroup of patients who have been treated with immunotherapy and have experienced "durable life-long regression of metastatic cancer" (slide 9):

That conclusion -- "immunotherapy can mediate durable life-long regression of metastatic cancer" -- is as close as a skilled researcher will get to the loaded "c" word: cure. Researchers do not like to speak of a cure for cancer, because "cure" is a loaded word, maddeningly vague and weighted with hope to laypersons. Instead, they speak of "progression-free survival" (PFS) and "no evidence of disease" (NED). I've learned to avoid using the "c" word and to orient my thinking around the durability of my remission. And as I approach the fourth anniversary of my fourth and current remission, I continue to nurse a hope that maybe, just maybe, this one will in fact be durable. 

Dr. Goff's presentation reinforced an emerging acceptance of the fact that I might not soon die from cancer. For 12 years I've stood on the precipice of death, with scans every 12 weeks to assess whether my mets have returned. On four different occasions those scans have revealed new metastatic activity: first in April 2012, second in September 2013, third in August 2014, and fourth in February 2017. I'm now four years into my fourth remission, and gradually am accepting that I might, just maybe, live a bit longer than I've expected. But still I doubt. 

The next dozen of of Dr. Goff's slides illustrate when immunotherapy is indicated, and provides examples from several types of cancers of immunotherapy successes. (slides 10-21)

This data from CRI is fascinating. On their CRI, you can click on each datapoint and bring up the underlying studies and drug approvals for each of the listed cancers or drugs. It's incredible to see how rapidly the landscape has changed for approving new immunotherapy drugs for so many different cancers. 

Interestingly, the data suggests that cancers with high mutations (like my bladder cancer) are more likely to respond to immunotherapy:

Dr. Goff's conclusion was that checkpoint blockage immunotherapy, like the Nivolumab therapy that I've had, is "more likely to lead to a long duration response than chemotherapy":

Dr. Goff closed with a caution of how much we still don't know: while immunotherapy can have a durable benefit (still avoiding the "cure" word), we don't have sufficient predictive tools of whether immunotherapy will work on any specific patient. The biomarkers from genetic sequencing of tumors are not consistently predictive or whether immunotherapy will work. Likewise, biomarkers do not predict which which patients will suffer which adverse side effects.  In addition, new immunotherapy drugs are being approve not based upon overall survival (OS), which is the best data for drug approval, but instead upon progression-free survival (PFS) or relapse-free survival (RFS). True, these drugs show a promising capacity to extend life, but more time is needed to give definitive proof. But this class of drugs shows great promise, and without a doubt has saved my life. 

Jennifer's Obituary

Jennifer Marberger Brothers 

Jennifer Marberger Brothers eased into immortality on January 6, 2024, after 60 years of love, compassion, and grace. Born in Chicago, IL on the first of April 1963, she was nobody’s fool. Raised in Ogden, she was a beacon of mindfulness and creativity, known for her caring and thoughtful approach to life. She was a woman of many talents and accomplishments, including a Sterling Scholar at Ogden High School (class of 1981), a Spencer W Kimball Scholar at BYU (class of 1984), an empathetic therapist and social worker, and skilled artist and musician. Most importantly, she partnered with her husband, Ken, whom she married in 1983, as they raised four children as they lived in the Washington, DC area between 1985 and 2018. After she was diagnosed with frontotemporal dementia at the age of 54, her family moved back to Utah and Jennifer resided at memory care facilities in Layton, Utah.

In her professional life, Jennifer was a talented designer who worked in the creative side of advertising and commercial design in the 1980s. She helped establish supplemental art programs at five different schools in the Washington, DC area. In the 2000s, Jennifer began working with adolescents in crisis, which led to her earning a Master of Social Work from George Mason University in Fairfax, Virginia. Jennifer was an award-winning watercolor artist and a skilled musician on the silver and spirit flute; she led groups in art and music therapy, organized djembe drum circles, and taught clinics at schools and non-profit organizations in Maryland, Virginia, and West Virginia. She was a dedicated social worker who ceaselessly provided mindful service to others. Jennifer loved to share her creative spirit with others, making her an inspiration to hundreds of students, clients, friends and family.

Jennifer’s life was a testament to her compassion and thoughtfulness. She was a woman of faith and provided lifelong service to her neighbors and community as a member of The Church of Jesus Christ of Latter-day Saints. She loved to serve and worship in the temple. She believed in prayer and in her years of illness often asked those around her to pray with her. She had a deep and abiding respect for the Lakota culture and participated in sweat lodges, drum circles, and sun dances. What mattered most to her was raising her four children with her husband, Ken Brothers. She is survived by her husband Ken, who moved back to Huntsville when she entered memory care, her daughters Chelsea Slade (Josh; Huntsville, Utah) and Kirsten Brightman (Jason; Parker, Colorado), her sons Spencer Brothers (Layton, Utah) and Garrett Brothers (Salt Lake City, Utah), her father and stepmother, Douglas and Liz Marberger (Uintah, Utah), her sister, Jamie Campbell (Brad; Enoch, Utah), half-siblings Adam Marberger (Heidi; Salt Lake City, Utah), Jack Marberger (Kristen; South Ogden, Utah), Abby Cragun (Chet; Layton, Utah), and her 7 grandchildren. Jennifer was preceded in death by her mother, Narlene Baird.

Jennifer loved travel and adventure. After she and Ken graduated from college, they spent a summer backpacking through 14 European countries. She frequently returned to Europe with family and friends. She loved exploring the Mayan ruins in Yucatán and Peru, witnessing the wonders of God’s creations on safaris to South Africa and Botswana, and delighting in the diversity of the Galapagos. She and Ken were certified scuba divers and they enjoyed exploring reefs and wrecks in the Caribbean. She looked forward to basking on ocean beaches and collecting seashells from different states and countries. Years later, she could pick up one of her shells and identify the beach and date of its discovery.

Some of our best memories with Jennifer were days boating on Lake Anna in central Virginia with the family poodle, Nephi. She made a dynamite chicken broccoli casserole. She kept a paper planner her entire life and reveled in her analog methods. She earned a black belt in taekwondo in her 40s. She tolerated Ken’s awful puns to beyond a reasonable degree. She would laugh until she cried while watching “Whose Line is it Anyway?” We will forever miss our sweet wife and mother.

Jennifer’s life was a symphony of love, creativity, and service. Her legacy will live on in the hearts of those she touched with her art, her music, her service, and her kindness. Those who knew Jennifer are encouraged to share their memories and upload photos to her memorial page as a tribute to her vibrant life. Let’s keep the memory of Jennifer alive and celebrate the remarkable life she led.

Funeral services will be held at 11 am on Saturday, January 13, 2024, at Myers Mortuary, 845 Washington Blvd., Ogden, UT, a viewing will be held prior from 9:30 to 10:30 am. Interment, Ben Lomond Cemetery.

In lieu of flowers, the family encourages donations to the Chris Atwood Foundation (www.thecaf.org).

Condolences may be sent to the family at https://www.myers-mortuary.com/obituary/Jennifer-Brothers-1#obituary.

Published on January 8, 2024 in the Ogden Standard Examiner

 

No hard feelings

No Hard Feelings

When my body won't hold me anymore
And it finally lets me free
Will I be ready?
When my feet won't walk another mile
And my lips give their last kiss goodbye
Will my hands be steady when I lay down my fears, my hopes, and my doubts?
The rings on my fingers, and the keys to my house
With no hard feelings

When the sun hangs low in the west
And the light in my chest won't be kept held at bay any longer
When the jealousy fades away
And it's ash and dust for cash and lust
And it's just hallelujah
And love in thought, love in the words
Love in the songs they sing in the church
And no hard feelings

Lord knows, they haven't done much good for anyone
Kept me afraid and cold
With so much to have and hold
Mmm, hmm

When my body won't hold me anymore
And it finally lets me free
Where will I go?
Will the trade winds take me south through Georgia grain?
Or tropical rain?
Or snow from the heavens?

Will I join with the ocean blue?
Or run into a savior true?
And shake hands laughing
And walk through the night, straight to the light
Holding the love I've known in my life
And no hard feelings

Lord knows, they haven't done much good for anyone
Kept me afraid and cold
With so much to have and hold

Under the curving sky
I'm finally learning why
It matters for me and you
To say it and mean it too
For life and its loveliness
And all of its ugliness
Good as it's been to me
I have no enemies

 

by the Avett Brothers  (link)

Jennifer died yesterday

Tomorrow, and tomorrow, and tomorrow,


Creeps in this petty pace from day to day,


To the last syllable of recorded time;


And all our yesterdays have lighted fools


The way to dusty death. Out, out, brief candle!


Life's but a walking shadow, a poor player


That struts and frets his hour upon the stage


And then is heard no more. It is a tale


Told by an idiot, full of sound and fury


Signifying nothing.

 

(Macbeth Act 5, Scene 5, lines 17–28)

Howling at the moon

I've held off on any new posts because my focus has been on holding my shit together while my wife is dying. Jennifer has been in memory care for more than six years due to her disastrous diagnosis of early onset dementia (frontotemporal dementia). She has been slowly declining and a couple of months ago was placed on hospice. She's transitioning. No one knows how long she will live. We've had active dying, vigils, rallies, stable status, and all of the misery in between. People look to me to be the source of information and coordinator of everything and it's exhausting. I don't know how many times I've been told that it's hard, they're sorry, blah blah blah. Tell me something I don't know. Worse is when people ask me what can they do. There is no socially acceptable answer that is honest. How about you find a cure for FTD? I'm bone-weary of putting on a happy face and placating others who just want a pat on their head and go on with their lives. 

Earlier this year one of Jennifer's doctor's told me that the woman I married 40 years ago no longer existed: FTD took Jennifer from me in 2017, but her body kept going. When I visit her each day, I feel that I am performing a duty while honoring the memory of a relationship. The crush of the passage of years has weighed down on my soul. I've looked for alternative sources of joy with some success: travels, spending time with family, long motorcycle rides, reconnecting with old friends, skiing. But the trip or the visit ends, and I'm right back where I was before, wading through my cesspool of loneliness and pain, witnessing the savage silence of my wife whither into nothingness.

My six month scans showed no evidence of disease. I am doomed to continue on alone. 

And so it goes.

Three years of remission, fewer scans in my future

Last fall I reserved a place in a University of Utah-sponsored tour of the D-Day Beaches and battle sites in Normandy. It was an amazing trip, led by a retired Colonel and our group of 17. It was humbling to stand on Omaha beach at low tide and look at the 500+ yards those Americans had to walk under murderous crossfire before they could even fire any weapons. Our guide told us that we could draw a circle with a 10 foot radius anywhere on that beach and it would intersect with a spot where a GI died on June 6, 1944. Yet they persevered and within six hours had broken through the beach defenses, starting the liberation for France and Western Europe. My 10-year old mother was living with her family in occupied Holland and eagerly followed the news of the allied invasion, eagerly awaiting the arrival of the American soldiers. It would take another eleven months for Germany to surrender. Six years later, my mother and her family emigrated to America. She carries with her a profound gratitude for the soldiers who fought to give her and the rest of Europe her freedom. As I stood on that sacred sand and later at the American Cemetery, I uttered a prayer of gratitude for those GIs.

The D-Day tour was a week long. I decided that I didn't want to just spend a week in Europe and considered my options, finally settling on Croatia. After briefly considering renting a motorcycle and exploring the country on two wheels, I realized it would be better to be joined by family. I offered to pay for the flights and lodging, and three of my four kids accepted (My oldest, Chelsea, is expecting and was unable to join us.) Each of the kids selected a different destination for the first week in Europe (Amsterdam and Prague for Spencer; Switzerland and Northern Italy for Kirsten and Jason; Paris and Milan for Garrett), then we all met in Dubrovnik. We explored the Adriatic Coast, going from Dubrovnik to Korcula to Hvar to Split. Everyone seemed to have a good time. It was also a bit poignant, as I realized that it might be the last time that all of us would be able to visit Europe as a family.

Last Thursday, I had another scan (number 56 for those keeping score). It was routine. Dr. Maughan got the quick readout and told me that there was no sign of any metastatic disease. This remission started in June 2020, with the elimination of my last persistent tumor through radiation. Dr. Maughan was pleased to mark my three-year anniversary of being disease-free. We discussed the big question: how durable was this remission. Dr. Maughan drew upon the studies of metastatic melanoma and renal carcinoma -- two cancers where nivolumab had been tested on patients prior to my first enrolling in the clinical trial in January 2015. He said that, for a small subset of each cohort (14% for melanoma, 7% for renal), patients had a complete and durable response. If those patients made it to 24 months without a relapse, then the likelihood of relapse dramatically decreased. Put another way, the Kaplan-Meier curve of the cohort flattened after 24 months. Dr. Maughan was cautiously optimistic that, because I was disease-free after 36 months, the odds of my relapsing were very low. He proposed, and I agreed, that we wait six months for the next scan, and stay on that schedule for two years. If I make it to five years without a relapse, then we'll discuss extending the period between scans to a year. 

This is a dramatic shift from the past eleven years. Wen I was first diagnosed with metastatic disease in April/May 2012, my odds of dying within 2 years was 80%, and 95% odds that I'd die within 5 years. Of course, that data was accumulated before immunotherapy revolutionized cancer therapy. Plus I have had the very good fortune to have received a complete response. I had one post-immunotherapy relapse in early 2018, and it took another two years and four months before I was once more NED (no evidence of disease). 

In the past few months, as this emerging promise of a durable remission became more clear, I have shifted my life view from waiting for death to looking forward to life. I have been given a new lease on life, and I am still adjusting my mindset on how to live it. Stay turned for future developments.

This is not to say that everything is peachy-keen. Two of my three scans had some troubling non-cancer findings: my neck scan confirmed that my left vocal cord was still paralyzed, and I had "moderate left spinal canal and neural foraminal narrowing at C3-C4. And my chest scan noted a hiatal hernia, and my lungs showed "moderate multiregional mosaic attenuation pattern in the lungs, suggesting a small airways or small vessel disease."

 

I emailed Dr. Maughan and Dr. Slade (my daughter) about those findings. Dr. Maughan said that he was focused on looking for metastatic disease and apologized for not discussing the non-mets findings. He explained that I had increasing arthritis in my neck, that I might be having some acid reflux from the tiny hiatal hernia, and the lung inflammation could either be secondary to that, or more likely the residue of a cold. I could follow up with a GI doc or pulmonologist if the problems persisted. Chelsea was more definitive: I'm getting old and had a cold. Don't sweat it.

Scan 55: NED for me, but breast cancer for my dog

Last Thursday, March 2nd, I had another set of CT scans. For some reason, readings by the radiologists were not completed until today. Dr. Maughan had looked at the images and told me he didn't see anything that concerned him, so I wasn't too worried. But I waited on posting an update until all three readings were posted. Last Friday the abdomen/pelvis scan confirmed no new mets. On Saturday, the neck scan was likewise negative for mets, while observing that my left vocal cord was still frozen (and noting that my nose had been broken at some point in the past 60 years). This evening (Tuesday March 7) the chest reading was posted with the observation:

Similar 0.8 x 1.2 cm subcutaneous soft tissue nodule along the right upper anterior chest wall (series 4, image 16) with central hypoattenuation. This may be postprocedural represent a lymph node. No axillary lymphadenopathy....No thoracic metastases identified.

I'm pretty sure that's referring to the persistent tumor that was irradiated in 2020, but I've emailed Dr. Maughan to confirm. The big takeaway, however, is that none of the scans found any new evidence of disease.

By contrast, my six year old goldendoodle, Cocoa, had a cancerous tumor the size of a golf ball removed from her mammary. She's doing ok recovering from surgery. The doctor thought he got clear margins, so we'll be doing watchful waiting. 

I've been continuing to deal with the consequences of my frozen vocal cord, which was caused by my radiation therapy in 2020. Skiing in deep powder leaves me sucking for air. Last Monday Spencer and I were skiing the Olympic downhill at Snowbasin with 12+ inches of fresh powder, and I simply could not breathe. I stopped halfway down, wheezing, and after I finally caught my breath I blew my nose and was stunned to see bright red mucus from both nostrils. I just can't exchange sufficient oxygen at altitude when making powder jump turns. Three days later I returned and skied the now-groomed downhills with no problems.I'm wondering if I'm going to need a type 1 thyroplasty and arytenoid adduction. I'll closely evaluate the pros and cons before I make a decision. 

My motorcycle group has been planning a trip to southern California this weekend. They are planning on trailering their bikes to St. George and ride from there; however, my trailer is buried under 3 feet of snow at the back of my property. I'd need a helicopter to get that out. So instead, I'm going to Sun Valley and continue to celebrate this awesome snow year.

 

 

Get busy living or get busy dying

The past few months have been more eventful than usual.

 

Vocal cord issues

In the past few months, I have been bothered by a frozen left vocal cord, which was caused by scar tissue created by radiation therapy in 2020 targeting a persistent tumor at the base of my neck. The frozen vocal cord makes it impossible for me to loudly call out to my grandkids behind the boat, or to sing, or to speak for more than 15-20 minutes. Having one vocal cord stuck in the closed position also restricts the airflow to and from my lungs, and causes me to become quickly winded. In August, I had a severe laryngeal spasm in the middle of the night, which was terrifying. September and October, I had several meetings with a speech pathologist to help determine what could be done. At the first meeting, I had a laryngoscopy – a long scope threated up through my nose and down to the top of my voice box – and for 45 minutes made all sorts of awkward noises while a speech pathologist and medical resident stared at a large screen, occasionally oohing and aahing as my throat flexed and right vocal cord vibrated. Twice in 45 minutes, they detected slight movement of my left vocal cord, which triggered orgasmic-like squeals from the medical professionals. I live to serve. 

 

My primary medical diagnosis was paradoxical vocal fold motion, laryngospasm, muscle tension dysphonia, and dysphagia. The goal of the therapy, according to the speech pathologist, was for me to learn a new way to breathe and a new way to talk. According to the provider notes:

A management program for laryngeal control and rescue breathing exercises was introduced/reviewed today.

- Breathing techniques were practiced: Nasal inhalation + pursed lip/puffed cheek exhale

-Continuous breathing cycle techniques instructed were: sniff inhalation + pursed lip exhalation (practiced first with a straw for controlled exhalation to maintain back pressure in the pharynx), 3 sniff inhalations + pursed lip exhalation, sniff inhalation + flattened lip exhalation, sniff inhalation + "Sh" sound exhalation, sniff inhalation + "s" sound exhalation.

-Relaxed laryngeal postures instructed were: yawn, chewing, low laryngeal inhalation, alleviating neck/back tension

 

Resonant voice therapy (RVT):

Facilitating Phoneme(s): "twang" (nya")

Approximate accuracy: 60% accuracy

Level of Cues and Type: moderate

Cues: midfacial vibrations and reduce physical effort/strain

Level(s) Practiced: sustained phoneme, syllable repetitions, word repetitions and phrase repetitions

Comment: Pt acknowledged that his speaking voice was more in his "throat", and yelling from his throat felt more constricted than twang

 

My takeaway of this therapy was that I learned new breathing techniques to help overcome my frozen vocal cord. When I have a laryngeal spasm, I can gently inhale through my nose, then puff my cheeks and slowly blow out. After three puffed cheeks exhales, I can put my upper teeth over my lower lip, forming an “f”, then quickly inhale from that throat position. It feels strange, but it works. The efforts to change how I speak were less effective, however, both because they felt forced and unnatural, and because I really don’t need it: I’m no longer practicing law or teaching.

 

In the past few weeks, I’ve gone skiing a couple of times. I’m been surprised at how easily winded I became. I think that part of it is the lack of cardio over the summer due to my paradoxical vocal fold motion, and the other part is the ongoing occlusion in my larynx, combined with my throat reshaping to help overcome my stuck vocal cord. I’m still figuring out how best to address this. The short-term consequence is that I’m not skiing as much, which is a bummer.

 

A rash of issues

In the past month, I’ve noticed a return of a rash around my calves. As well as on my lower back. Since I started immunotherapy in early 2015, I’ve had episodic rashes that my doctors have described as immunotherapy-induced dermal toxicity: My T cells ramp up and become hyper-aggressive and a see the results in my largest organ – my skin. In the past, the most common location of these rashes has been on my calves and face. This time, it’s my calves and lower back. I’ve been applying a heavy lotion (triamcinolone acetonide 0.1%), which helps a bit. I’ve wondered if the return of the rash is evidence that my immune system is ramping up because it’s detected new metastatic activity. This afternoon’s CT scans may shed some light on that.

 

Get busy living or get busy dying

Last month marked 11 years since I was diagnosed with bladder cancer at age 49. Its been 10½ years since my disease went metastatic and I was given a diagnosis of death: 80% chance of dying in 2 years, 95% chance of dying in 5 years. As documented in this blog, I reconciled myself to the fact that imminent death, arranged my affairs, retired from my legal practice, and focused on spending time with my family. I went through two different chemotherapy regimens with the goal to extend my life until I get into one of the new immunotherapy clinical trials. In late 2014 I had extensive pulmonary embolisms and rapid tumor growth on the left side of my neck. In early 2015 I was one of the first metastatic bladder cancer patients to enroll in a clinical trial with nivolumab (Opdivo), and was one of seven patients to have a complete response.

 

This remarkable result was tempered by the fact that there was no data to help me understand how durable my remission might be. As my doctors liked to tell me, I was the data. Having accepted the inevitability of my early death, I had no basis to adjust that expectation. I led life by focusing on the present, finding joy in each day, and releasing any hope of living to anywhere close to my actuarial age. I focused on my immediate footsteps, not lifting my eyes up to look at the horizon.

 

On October 10, 2017, while running errands in Northern Virginia, Jennifer felt lightheaded, pulled over, then went catatonic. It took several hours for first responders and doctors to revive her. That event marked my wife’s plunge into what eventually was diagnosed as early onset frontotemporal dementia, leading to her eventual placement in a memory care facility. I visit her daily, and willingly cover all her expenses. October 10, 2022 was a bad day for me, marking a perverse five year anniversary of the end of my relationship with my wife as I knew it.

 

Recent conversations with my family and friends have helped me understand that, for the past 11 years, my life has been focused upon the likelihood of my imminent death. I’ve been thinking of The Shawshank Redemption, and what Andy Dufresne said to Red: “I guess it comes down to a simple choice, really. Get busy living, or get busy dying.” I’ve spent eleven years busy dying. I’m now wondering if I should get busy living. But I believe to do so it requires some hope, some basis, to hope. And as Red told Andy, “Hope is a dangerous thing. Hope can drive a man insane.” I’ve spent eleven years avoiding insanity by refusing to hope that I’ll be cured of my metastatic bladder cancer. But should I? Was Andy lying when he told Red, “hope is a good thing, maybe the best of things, and no good thing ever dies”? I think so. All things die. Everything is vanity.

 

But still I live. And I am weary of keeping my eyes on my immediate footsteps. I am tempted to hope. I want to feel like Red as he was riding the bus to Mexico: “I find I'm so excited, I can barely sit still or hold a thought in my head. I think it's the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope.”

 

I don’t yet know how this will play out. I want to give myself permission to hope. But I am reluctant to allow my viewpoint to change. I see the rash on my body and wonder if it’s a warning that my metastatic cancer has returned. Every 12 weeks I have my CT scans and I expect fate to give me snap kick in the balls. And every time my scans are clean, I am tempted to hope that my next scans will be clean. But I’m in my fourth remission, which means that I’ve had four different cancer-mediated nut shots. How do I give myself permission to my life in any way other than one day at a time given the high likelihood that my metastatic cancer will come back?

 

Last week I was talking about this with a close family friend. She said something that made me realize that for more than a decade I had not been allowing myself to focus on living instead of dying. Tears came to my eyes as I realized that I had been foreclosing myself from the joy of living. I had an epiphany that deciding to live was a choice, regardless of my current diagnosis. I’m still pondering what this means, and how I might reorder the filters of my existence. 

 

NCI GUSC BCTF CTPM

As I’ve been writing this post, I’ve been listening to and participating in an federally-sponsored conference on planning clinical trials for bladder cancer (formal title: "National Cancer Institute  Genitourinary Steering Committee Bladder Cancer Task Force Clinical Trial Planning Meeting: Defining the next generation of clinical trials with combination therapies in non-muscle invasive bladder cancer"). I just delivered a philosophical snap kick to some of the top bladder cancer researchers in the country by pushing back hard on the idea scheduled TURBT's for prophylactic purposes, regardless of patient need. I thought of my brother-in-law's recent difficulty in recovering from the anesthesia after a "maintenance" TURBT, and thought about the elderly patients who were being dragged back into surgery simply for curiosity. I called those kinds of TURBT's “antithetical to patient-centered care.” Several heads rocked back, and the comment board lit up with a number of messages supporting my view. Even the best doctors sometimes get more interested in the data than the patient. That's my job as a patient advocate:  remind the professionals that there's a human on the pointy end of a needle.

 

Scan #54

I left the CTPM meeting a few minutes early to make my way down to the Huntsman Cancer Center's Farmington campus for my scheduled 12 week CT scans of my neck, chest, abdomen and pelvis. I think this is scan number 54. I dutifully drank my barium contrast as scheduled, laid down on the table while the tech quickly placed an IV in my arm. When the iodinated contrast was pushed into my vein, I felt the vasodialator effect in my chest, abdomen, and pelvis, and surprisingly my lower back where my rash was flaring up. I reminded the tech to leave the IV in, then walked over to the lab for my blood draws. I knew there would be a long wait before I'd see Dr. Maughan, so I pulled up the New York Times on my iPad and and caught up on all the misery that's fit to print.

 

After an hour or so, I was called into the exam room for vitals and a meeting with Lindsay, the PA, where I reviewed my recent history (rash, frozen vocal cord issues). She checked my rash, wrote a scrip for a steroid cream, and told me Ben would some in soon. A few minutes later Dr. Maughan came in and we caught up. I had not seen him on my last two visit since he was busy and from my perspective there was nothing to talk about. He said that my scans had not been read by a radiologist but that he had taken a quick look and didn't see any visible issues. I told him (and showed him) about the rash, and wondered why my immune system might be revving up again. He speculated that there was a possibility that my immune system had sensed some microscopic metastatic cancer and was reacting to it. I also noted my vocal cord issues, which had impacted my breathing and talking. He smiled and pulled out a letter from Unum, one of the insurers that has been paying my disability, where the insurer was asking if there were issues with my returning to work, specifically asking about talking and breathing issues. I assured him that Unum had waived its rights to try to halt its insurance payments, but that he could easily answer the question as indicated by my medical history.

 

I told Ben that, with permission, I had forwarded him some slides from a recent bladder cancer task force meeting where we had discussed a proposed clinical trial to deescalate Enfortumab Vedotin (EV) with pembrolizumab in front-line metastatic urothelial carcinoma. I've been watching the development of EV, both with and without immunotherapy, as the next potential therapy if and when my mets return. The overall response rate of EV is very good, but the side effects can be horrible. Ben said that he had not been able to have any patients adhere to to the complete schedule for EV+pembro due to patient toxicities. I told him that I thought that the proposed trial was outstanding, since it could set forth a new dosage schedule for a very promising but highly toxic therapy. I asked if he'd discuss the proposed with his colleagues and see if Huntsman could possible join the trial.

 

I also told him about a new NCI clinical trial award program (PAR-21-306) for young researchers and suggested that he share it with the residents and fellows at HCI. The federal government is offering to distribute our tax dollars, and I'd strongly prefer that we keep whatever portion we can for bladder cancer research.

 

We ended our conversation by my telling him that I'd review my CT scan results once they were posted in Epic's MyChart. He told me he'd call if there was anything concerning. I stopped off at Five Guys to wash the barium and iodine out of my system with 4 liters of Diet Coke, chased by a cheeseburger and fries. I visited Jennifer at Apple Village then went home and worked on this post. I decided I'd wait on the CT results before posting.

 

(Friday Dec. 9): This morning I've been listening to day 2 of the NCI GUSC BCTF CTPM, including an hour or so sitting in the hot tub. My CT results were finally posted: no new mets. One more reason I can get busy living.

London, Covid, vocal cord issues, and another scan

It's been an active summer.  In early June my 88 year old mother flew up from Florida and spent two months in Utah, where she lived for 50 years. She split time between my place and my brother's home in Park City. She is doing remarkably well for her age, and was able to catch up with friends and extended family. She wanted to go for lots of rides in the Vanderhall, which was great except for the extraction at the end of the ride. After a couple of times, she decided she'd had enough of that kind of fun. When she flew home in early August, we had the feeling that this might be her last trip to Utah. 

In early July I flew to London to join a 10 day tour sponsored by my undergraduate alma mater, the University of Utah. Our group of 15 retirees saw and discussed six plays in London's West End: To Kill A Mockingbird; Jerusalem; The Southbury Child; As You Like It; That Is Not Who I Am; and Jack Absolute Flies Again. We also enjoyed some excellent meals and did some behind-the scenes sightseeing. It was a great trip, marred only by my positive Covid-19 test the day I flew back to SLC. I followed the protocols, got Paxlovid, self-isolated for 5 days, tested negative, masked for another 5 days. It turned out to me similar to a chest cold. Being quadruple vaccinated was the difference-maker. 

An ongoing issue has been my dealing with my frozen left vocal cord. It's been like that for more than a year. I've noticed that it's been hard to get enough oxygen into my lungs when I'm engaged in physical activity, such as hiking, skiing in deep powder, running, or even walking up a bunch of stairs. In March I got some injections to help compensate, and that helped a bit. A few weeks ago, I had a frightening experience. Here's the email that I sent to my ENT at 3 am:

“I nearly died this morning. About 45 min ago I woke up gasping for breath. Both vocal cords has frozen mostly closed. I was wheezing, gasping, coughing, and getting lightheaded. I was about to call 911 but realized I couldn’t speak. I looked heavenward and shouted God help me several times. I felt one of my vocal cords relax and immediately started burping excess air from my lungs, which further helped force open my vocal cords and made it easier to breathe. Immediate crisis resolved. I’m left with a banging headache, I still can’t breathe through my nose,  and I’m very concerned about the next time. Brilliant diagnosis and inspired effective therapeutic intervention eagerly awaited. Thanks, Ken”

My ENT decided that this was a laryngeal spasm, perhaps caused by acid reflux, and enhanced by my frozen vocal cord and the injections. So now I'm taking a PPI antacid and am scheduled for several sessions with a speech pathologist to learn how (in her words) to breath and talk. This adventure is no different from all the other challenges I've faced: adjust to the new normal, understand my limitations, and roll with it. 

A couple of weeks ago I went on a 4 day with my motorcycle group, the Temple Rider's Association. We rode to the Four Corners area, riding at least two of Butler Maps' Yellow (G1) roads each day. 1200 miles later I was back hope with a bit of sunburn, chapped lips, and ready to soak in my hot tub. I also joined my friends for the Utah Shakespeare Festival in Cedar City, where we saw The Tempest, King Lear, and All's Well That Ends Well.

Last week I had another set of scans. Everything was unremarkable, which continues to be remarkable. No evidence of metastatic cancer. My doctor noted that, after two years of NED, usually the frequency of scans would be extended. But we agreed that, in view of my history of cancer returning, keeping the scans at 12 weeks would be prudent. So I get to keep staggering on.

Scan 52

 Highlights of yesterday’s CT scans:
    1.    No new mets
    2.    “There is persistent medialization of the true left vocal cord, medialization of the left arytenoid cartilage and minimal asymmetric dilatation of the left piriform sinus, compatible with left vocal cord paralysis.”
    3.    “There is a transitional lumbosacral vertebral segment, which appears to represent a partially sacralized L5. There is narrowing of the L4-5 intervertebral disc space, consistent with degenerative disc disease.”
    4.    The nonionic intravenous contrast generates an astonishing amount of methane

I also got a new toy: