Friday, March 18, 2022

Of blood thinners, gross hematuria, and broken ribs

 I've been taking Xarelto since early September, when my regular 12 week scans revealed extensive pulmonary embolisms. My December scans showed that the PEs had abated, but my doctor said I should continue with the blood thinners because this was my second episode of PE's. In the past 12 weeks, I've kept seeing gross hematuria (visible blood in my urine), including a Sunday morning in January where the majority of my urinary output was bring red. I followed up with a urologic oncologist, who ordered a scan of my kidneys and ureters. That February 17 scan showed nothing out of the ordinary, so everyone shrugged their shoulders and told me to stay the course.

Yesterday I had another round of CT scans -- No. 52, if I'm counting correctly. The results were posted today. No new metastases. No evidence of disease. Yay. The scans did show chronic inflammation in my ureters and neobladder, which is the likely result of the blood thinner and source of the bleeding. It also showed that I had two cracked ribs: "New nondisplaced fracture of the anterolateral left sixth and seventh ribs with callus formation."

I'm pretty sure that happened when I was skiing with my brother in January. We had stopped to discuss whether we were done for the day, or to take another run. I didn't notice that my left ski had slid slightly downhill to cover the basket of my ski pole. We decided to take one more run and I shifted my weight to get going; however, my ski pole was stuck under my downhill ski. My momentum caused me to topple over and I fell hard on the left side. The carbon fiber pole snapped right above the basket and I fell like a tree on the left side of my chest , unable to extend my arm to soften the fall. I landed squarely on the handle of my pole which slammed into my chest just below the heart. My breath was knocked out of me and as I sucked in new air, my chest lit up in pain. I muttered that I thought I might have broken a rib, and that this was my last run. The impact area of my chest hurt for several weeks, and even now it's a little tender. Now I know why. But it hasn't hurt enough to keep me off the mountain, even though this has been a sub-par year for snow. Suck it up, buttercup. 

Jennifer has not been doing too well. At the end of December, Layton Park Memory Care abruptly announced that it was closing. The owners had received an offer they couldn't refuse for the building. We screened several new memory care locations and eventually selected Apple Village in Layton. But Jennifer's transition was rough: new location, new staff, delays in transferring medications, and a Covid-19 outbreak within days of her arrival. Fortunately she didn't get sick, but the quarantining ratcheted up her anxiety. It's been a rough couple of months, but I think that she's doing better now. Her frontotemporal dementia continues to gradually degrade her capacities. and sometimes it feels like we're bailing the Titanic with a teaspoon. As David Robert Jones said, it ain't easy. With the help of the good Lord, we can all pull on through. 

Thursday, December 9, 2021

Riding the roller coaster

A lot has happened in the twelve weeks since my last scans. On the medical side:

  • In light of the finding that I had extensive pulmonary embolisms in my right lung, I immediately started taking Xarelto, front-loading with 30 mg per day for the first thirty days before dropping back to 20 mg/day. My oncologist, Dr. Maughan, has told me that since this is my second experience with PE, I'll probably taking blood thinners for the rest of my life.  
  • A sonogram of my heart showed no clots or damage due to the PE.
  • A ultrasound of my legs failed to find additional deep vein thrombosis clots in my legs.
  • An MRI of my brain showed no clots or stroke damage.
  • An otolaryngologist and speech disorder specialist did an extensive examination of my frozen vocal cord, and concluded that my left vocal cord nerve likely had been adversely affected by the scar tissue surrounding the supraclavicular node tumor that was was nuked in radiation therapy back in June 2019. The doctor said that she might be able to release the never with a series of botox-like injections, but wanted to wait for at least six months until my PE's were cleared and I could pause my Xarelto to reduce the risk of bleeding. So I'm still speaking with half of my vocal cords. 
  • In October I caught a cold and learned that coughing with a vocal cord stuck open sucks. It is really difficult to generate any pressure in the bronchial tubes to clear phlegm. 
  • In the past six weeks I've noticed blood in my urine on several occasions. Lab tests have confirmed the ongoing presence of blood in my urine, but no one has yet figured out the cause. It may be because I've been helping my son renovate his new house and wasn't hydrating enough, compounded by my taking blood thinner medication. It doesn't seem to be from my kidneys, and obviously not from my bladder (since I don't have one). Follow-ups are scheduled for next month.
  • Today's scans showed no metastatic activity, and also saw no more pulmonary embolisms. Merry Christmas!

I was particularly active in my role as a bladder cancer patient advocate:

  • In September I  participated in an educational seminar sponsored by Johns Hopkins Greenberg Bladder Cancer Center, speaking with Noah Hahn about patient participation in clinical trials.
  • In November I was a panelist in an FDA Oncology Center of Excellence Public Workshop regarding Clinical Trial Design for Non-Muscle Invasive Bladder Cancer
  • I participated in three meetings in my role as patient advocate on NIH's National Cancer Institute's Bladder Cancer Task Force, where we focused on defining the priorities for NCI-sponsored clinical trials in bladder cancer, which will drive tens of millions of dollars of funding for the next five years.
  • I participated in three additional meetings of NIH's Patient Advocate Steering Committee, focusing on training new patient advocates on more than 40 NIH committees and task forces. 

In my personal life:

  • In early September I joined with some old friends and attended the Utah Shakespeare Festival in Cedar City and saw four plays in four days (Richard III, Comedy of Errors, Pericles, and Cymbeline). 
  • The following week my brother and I attended two concerts: one featuring Styx and REO Speedwagon at the Utah State Fairgrounds, and the second in Denver to see the Eagles on their Hotel California tour. 
  • I helped Spencer add a bathroom to the basement of his new house, reminding me why I didn't become a carpenter, plumber, electrician, or painter.
  • In October Chelsea gave birth to her sixth child after 20 minutes of hard labor. Mom and baby Benjamin are well. Her oldest daughter contracted Coronavirus from a school classmate a few days before Chelsea gave birth and it spread to the rest of the family (except Chelsea and the baby), but fortunately everyone fully recovered.
  • In November my brother and I picked up a bone-stock 2021 Jeep Wrangler in Boise that had been ordered for my Kirsten back in August. She'd sold her old Wrangler and her nephew agreed to buy her Subaru. I mounted my Gladiator OEM wheels, added a few other things, then I delivered it to her in Denver and brought back the Subaru. Merry Christmas!

On November 21, my stepfather, Ralph Telford, died after suffering internal bleeding and a stroke. He was 87. He married my mom in 1994, soon before they both retired from teaching. They served multiple missions for the Church of Jesus Christ of Latter-day Saints, moved to Florida, and enjoyed their golden years together. I flew to Florida the same day and returned with my mom a couple of days later. Thanksgiving was nonetheless a time to give thanks and recall the joys that Ralph brought into our lives, plus we celebrated Benjamin's birth. Ralph's funeral was on December 1, and tomorrow I'm accompanying my mom as she flies back to Florida.

Jennifer meanwhile continues to patiently endure the ongoing effects of frontotemporal dementia. Her movements are slower, and her fine motor skills continue to decline. She has difficulty carrying a conversation, but always greets me with a big smile as I walk into the memory care center. I find myself applying one of her core teachings: just do the next right thing. And hopefully I'll continue to have lots of opportunities to do so. 

ps: Snowbasin opens on Saturday!

Thursday, September 2, 2021

I've got a spinnaker sail in my throat, but no mets

In mid-May, my voice suddenly became hoarse. I woke up one morning and was unable to speak with any force. I couldn't shout or sing (well, I couldn't sing before either, but now I couldn't make singing-like noises). I had no other symptoms. I figured it was springtime pollen and ignored it.

On June 10, I went in for my quarterly CT scans. They were clear, but Dr. Maughan suggested that I have my hoarseness checked out by an ENT. Who knew that would lead to a rabbit hole from which I'm still trying to escape. On June 14, I visited an ENT, who shoved an endoscope (a type of rectal probe) up my nose, through my sinus, snaked it down my esophagus, through my stomach, then through my intestines until it came out of my butt.  Ok, maybe I'm exaggerating a little, but that's what it felt like. The ENT said I was negative for any tumors, cysts, or hemorrhoids, but that the right side of my vocal chords were inflamed. He pulled on his beard, consulted some tea leaves, threw down some bones and stared, then concluded that I had "silent acid reflux" that each night was rising from my stomach and hitting my vocal chord while I slept on my right side. (I don't sleep on my right side, but he didn't ask me and I didn't want the facts to conflict with his amazing prognostication.) He suggested that I take an over-the-counter antacid such as Prilosec, patted me on the head and sent me on my way. 

Stupidly, I went out and bought some Prilosec. I flew to Florida a few days later to visit my mom, sister, and their respective spouses. The Prilosec had made no difference, but I'd noticed some occasional tightness in my lungs and occasional coughing. After I returned from Florida, I went to a urologist to follow up on the radiologist's conclusion that my neobladder was showing signs of chronic inflammation. He pulled up my CT scans, called in a couple of his colleagues, and they all hummed and hawed at the magnificent work of Dr. Gary Steinberg, who constructed my neobladder more than 9 years ago. Finally, one of the urologists turned to me and said that they usually don't get to see juvenile neobladders in the wild. They all concluded that the radiologist who saw chronic inflammation was on drugs and that my neobladder was fine. They patted me on my head and sent me on my way.

I continued to take the antacid and noticed no improvement. I made an appointment with my GP to renew one of my prescriptions, and we spent a half-hour reviewing my hoarseness symptoms. He smiled at the ENT's clever but misguided diagnosis. He was confident enough to tell me that he didn't know what was causing my idiopathic laryngitis. He suggested that I visit another ENT to get a second opinion, and also get a pulmonary function test. Dutifully, I did both. The second ENT gave me a second opinion (not only was I fat, but I was also ugly). In revenge, he snaked his rectal probe through my sinus (after promising that it had been thoroughly cleaned several months ago) and concluded that there was no visible cause of my idiopathic laryngitis. He did admit, however, that they called it "idiopathic" because patients were idiots. I was comforted by his candor and told him that I was Covid-19 positive. He smiled and said "me too." He added that I could stop taking  Prilosec. It took me several days to figure out how to stop  Amazon's recurring delivery. 

That brings us to the present. Today I got another round of CT scans to my neck, chest, abdomen and pelvis. After I returned to meet with Dr. Maughan, his PA Lindsey popped in and told me that the radiologist had found that I had a bunch of pulmonary embolisms in my lungs, so they were holding me there until they had a better reading on what was going on. I recounted to Lindsey how in October 2014 I'd been called into NIH for a clinical trial evaluation but when they found I had PE's they instead hospitalized me for several days and started mo on Lovenox. Lindsey was glad that I wasn't freaking out, and told me they'd put me on a blood thinner such as Xaralto. A few minutes the clinical pharmacist came by and told me about a program with Xaralto's manufacturer had to reduce the cost of the drug, and in a few minutes I'd made the arrangements to get the discounted price. I appreciated that patient-centric concern.

Eventually, Dr. Maughan came in and reviewed my chest CT scan with me. Scrolling through the scan looked like a scrolling Rorschast Test, but he assured me that I was about to die of a heart attack, and could I add him to my will. But seriously, he said I should start on Xaralto ASAP, plus get an EKG and an ultrasound of my legs to confirm the DVT. Later I got a message from Lindsey that he also wanted to have an MRI of my brain to confirm that no clots were about to cause a stroke.

As I was typing this, my scans were posted. No metastatic disease noted. Yay! The chest scan found:

"Filling defect in the lobar pulmonary arteries of the right upper lobe, right middle lobe, and right lower lobe with extension to the segmental and subsegmental pulmonary arteries consistent with acute pulmonary embolism."

Ok, so I've got lots of blood clots in my lungs. That's bad. I'm glad the scans caught it, and hope the Xarelto will work as well as it did 7 years ago. I'll start it tomorrow.

My neck CT scan found: 

"Findings consistent with a left cord paralysis with spinnaker sail is identified. There is medialization and thickening of the left aryepiglottic fold."

Holy potatoes, Batman! I have a spinnaker sail in my throat! What the heck is that? I'll summarize my research later. For now, a quick search using my favorite search engine showed this:

Friday, June 11, 2021

Another clear set of scans

Yesterday I had another set of CT scans to my neck, chest, abdomen and pelvis, which found no evidence of metastatic disease. Yay! I think this was scan #48. I'll have to celebrate when I hit the big 5-0.

The scan did note that my neobladder showed evidence of chronic inflammation, so I guess I'll have someone look into that. I've also been having a persistent hoarse throat (but no other symptoms), which I assumed was due to pollen. But yesterday Dr. Maughan said that I should have an ENT check it out, because there were rare instances when asymptomatic hoarseness could be a sign of something more serious. So I'm seeing a tree doctor on Monday. (Dr. Maughan immediately caught the Tolkien reference.)

Before going in for my scans, I stopped at my primary physician's clinic for a cortisone shot in my right shoulder. It's been hurting ever since I caught an edge and had a hard fall on it at the end of the ski season. Helping Kirsten and Jason move into their new house in Denver last weekend probably helped aggravate it. So now my pain has been eased. 

This week I helped review a manuscript regarding the identification of best practices in clinical trials for non-muscle invasive bladder cancer. I was told that I'd be named as a co-author. I've been published a number of times with legal articles, book chapters, and so forth, but this will be my first medical publication. Woot.

Thursday, March 11, 2021

12 weeks of adventure

These past 12 weeks since my last scan have been more eventful than most: a quiet Covid Christmas, bidding good riddance to 2020, a despicable assault on democracy, the inauguration of a new era, and most importantly some decent snow to save the ski season. I ended up missing the first couple of weeks of good snow, however, because the day after the first good storm of the season my brother and I started driving from Utah to Florida in my F350 diesel dually pulling my 43 foot 5th wheel. It was an eventful trip: In Wyoming we were delayed due to I-80 being closed due to more than 40 semi wrecks; in Kansas we ran into freezing rain and nearly jackknifed twice; in Memphis we got trapped for two hours  navigating around low bridges; and in Birmingham we missed crossing paths with an F4 tornado  by less than 5 minutes. We rolled into central Florida on Tuesday morning, delivered the 5ver to my sister, visited my mom and stepdad; my brother flew home and Spencer flew out; he and I drove back to Utah via New Orleans (bignets and jazz), Dallas (BBQ and the Texas Book Depository), and Denver (visiting Kirsten and Jason). The skiing was fine for the rest of February.

At the end of February I traded the F350 for a Jeep Gladiator I'd ordered back in December. (Build details: 2021 JT Willys Diesel Sarge/Tan 26W 3–Piece Hard Top, LED Lights, Cargo/Trail Rail, Trailer Tow, Cold Weather, Active Safety, Adaptive Cruise Control/Forward Collision.) I'm liking it. Spencer is taking it to the Needles in Canyonlands this weekend to put it through its paces. I'm looking forward to driving naked (top and doors off) once the snow melts. My Harley Fat Boy is jealous.


Last month I was offered the chance to get the coronoavirus vaccine. My last post captured my musings on the vaccine. More recently, a comprehensive article from MD Anderson confirmed what I'd already concluded: the vaccine is safe and a very good thing. I got the first dose of the Pfizer vaccine on Feb. 18 and the second this morning. A recent NY Times article said that the vaccine could cause enlarged lymph nodes that could be mistaken for cancer. Since the effect could last up to six weeks after getting vaccinated, and since I'd already gotten the first dose, I decided I'd just tell the staff that I'd gotten the jab and let the professionals deal with it. Today is the one year anniversary of the WHO declaring a COVID-19 pandemic, and I'm hoping that mass vaccinations will be out pathway out of it. Darwinism can claim the vaccine deniers and wild-eyes whackjobs.

Meanwhile, on Tuesday I had my annual wellness exam, as required by Medicare. Except for that pesky cancer thing, everything was in expected parameters. I was amused to receive an automated follow-up note this morning telling me that, although my cholesterol was within the normal range, it was still a little high, and perhaps I should switch to a low-fat diet. Jeez. Three-quarters of diet is die. One of the few benefits of having metastatic cancer is that I can eat whatever damn thing I want. I'm not going to die of obesity or hypertension or some other fat boy disease (unless it's due to that Fat Boy). Eventually, my cancer is going to overwhelm my body and cause cascading organ failure. Until that happens, I'm going to eat as much red meat, bacon, donuts and cookies as I want. Embrace the wild-eyed whackjob within.

When I arrived at Huntsman Cancer Institute to get my labs, scans, and visit with Dr. Maughan, the nurse who did the draws mentioned that I was scheduled to get an infusion. Not to my knowledge, I said. I'd suspended my Opdivo infusions in June and was on surveillance. She shrugged and said that my schedule said I'd be getting an infusion. After my draws, I checked into CT. While waiting, one of the nurses came over and told me not to have my IV taken out after my CT scan because I was getting an infusion. Huh. Maybe Dr. Maughan has added an infusion t my schedule in the expectation that the enlarged node or possible tumor that showed up on my last scan in December had grown sufficiently to justify a resumption of therapy. I mentally shrugged. I knew I'd be resuming therapy eventually when my cancer returned. Maybe today is the day. 

After my scans were completed, I had a longer than usual wait to see the doctor. Fortunately, I'd brought my iPad and the Libby app. I've been working my way through John Scalzi's sci fi. I've finished the Interdependency trilogy, and am on book 3 of the Old Man's War series, and am simultaneously reading Paolini's To Sleep in a Sea of Stars

Eventually I was called back and met with Lindsey, the PA who with Dr. Maughan has been managing my care. She told me that my labs were fine and that the neck, torso and abdomen CT scans were clear. No word on the chest, which was where the maybe tumor was located. She or Ben would call me if there was anything amiss. I asked why I was scheduled for an infusion, and she was surprised as I was. After checking out the notes, she said that it was for hydration to help flush my CT contrast in case my creatine level was out of normal range. Since my kidneys were fine, no infusion would be needed. I told her that my dermatitus was slowly tapering, with slightly less rash on my face, scalp, groin or calves. I told her I'd just received round 2 of the vaccine, and asked her to let the radiologist know in case any of the scans seemed wonky. At my GP's request, I asked her if I was ok to get the shingles vaccine. She said that there was no issue due to my cancer or immunotherapy, but that I should wait at least four weeks after my coronavirus vaccine. She asked if BCAN was doing a walk in May, and I said it 2021 would be another virtual event. (I'll provide further details in a later post.) Unless something is showing in my chest CT, I said we'd see each other in 12 weeks.

Thursday, December 10, 2020

Immunotherapy and coronavirus vaccines, and a CT scan

Twelve weeks have passed since my last set of scans, so it was time to get another dose of radiation. As usual, I drank a liter of barium sulfate, then went in for my blood work. A new nurse blew my veins in both arms then embarrassingly told me that I should go to CT and have them access a vein, do the scans, then leave the IV in so she could get a blood draw. It’s times like this that I regret having my port removed back in 2017. I ambled over to the CT area and the CT tech promptly did a good stick in my right arm inside the elbow, next to the blown vein. It’s always nice to have an experienced when placing and IV. I got the scans of my neck, chest, abdomen, and pelvis, then walked back to get my blood drawn for my labs and my appointment with Dr. Maughan.


I’d been wondering about the possible interactions between my immunotherapy and the newly developed COVID-19 vaccines. Both work by stimulating the immune system, and I wondered if there was any risk of interaction between the two. A few days before Thanksgiving, I emailed my oncologist, Dr. Ben Maughan:

In advance of my next appointment on December 10, I have two questions and a form:

1.  Coronavirus vaccine: Will there be any risk of interaction between the Pfizer or Moderna vaccine and my having had years of an anti-PD-L1 checkpoint inhibitor (Opdivo)? Will HCI offer early access for patients like me?

2. I continue to have a grade 1 rash and itching on my scalp and face, despite not having had Opdivo for more than 5 months. I was hoping that as the drug titrated out of my system, the rash would subside. What do the data suggest may be the durability of this side effect? Does it make sense for me to visit an HCI dermatologist to discuss? (I visited an IHC dermatologist at McKay Dee last year and she arrogantly dismissed any possibility that I had immunotherapy-induced dermal toxicity.)

3. My long-term disability insurance company asks that you fill out a form to confirm that you’re continuing to follow me for mets BC. The form is attached. All they care about is that am still under a physician care for mets BC; the functionality questions are irrelevant.

Happy Thanksgiving, and I’ll see you in a couple of weeks,


A few hours later, he responded:

I hope your Thanksgiving is a wonder time as well. I have to admit that I laughed and enjoyed the comment about your dermatitis. We will work on the form and get it back to you soon. Regarding the vaccine, we have no data (at least that has been published). There is a theoretical concern that vaccines will further stimulate the immune system and might lead to further autoimmune toxicities. The durability of the side effects can be very long (years) if there is a permanent change to the immune system which appears to be the case for you. This is why there is a theoretical risk in combination with vaccines (and so vaccines are often listed in the exclusion criteria of many clinical trials). Overall I suggest that the risk/benefit still strongly favors you getting the vaccine. Not sure how it will be distributed but with three companies (now AstraZeneca as well) manufacturing them I believe one will be available for you soon after approval. Team, please make a referral to UoU Dermatology. Also we need to fill this out. Can we do it tomorrow during clinic? 


I’ve done a bit or reading about the coronavirus vaccines. There is no data that I could find that shows whether cancer patients who have had immunotherapy are at greater risk for complications if they get the vaccine. This issue is complicated by the fact that both the Pfizer and Moderna vaccines are mRNA vaccines, which have never previously been used.  

Vaccines work by training the body to recognize and respond to the proteins produced by disease-causing organisms, such as a virus or bacteria. Traditional vaccines are made up of small or inactivated doses of the whole disease-causing organism, or the proteins that it produces, which are introduced into the body to provoke the immune system into mounting a response. mRNA vaccines, in contrast, trick the body into producing some of the viral proteins itself. They work by using mRNA, or messenger RNA, which is the molecule that essentially puts DNA instructions into action. Inside a cell, mRNA is used as a template to build a protein. An mRNA is like a proto-protein. To produce their mRNA vaccines, Pfizer and Moderna produced a synthetic version of the mRNA that the coronavirus uses to build its infectious proteins. This new mRNA is what is injected into the human body. The body reads the mRNA as instructions to build the coronavirus protein. These proteins are solitary, so they do not assemble to form the actual conronavirus. The immune system then detects these viral proteins and starts to produce a defensive response to them. (This article does a good job explaining mRNA viruses.)

My nivolumab is an anti-PD-L1 immunotherapy that uses my body’s immune system to attack my cancer cells, but it does not use mRNA. Instead, it uses a different type of protein that strips the cancer cell’s camouflage that tricks the immune system into not attacking the cancer cells. The mRNA vaccine’s methodologies and pathways are different from anti-PD1 and anti-PD-L1 cancer immunotherapy, so there does not appear to be an obvious conflict, at least based upon my review of the data. But I’m a lay person, and acknowledge that it has not been specifically tested in a population of immunotherapy cancer patients.

Happily, Dr. Maughan is not a lay person, but is immersed in the world of cancer therapies. Having primed the pump with my email, I asked him about his views. He said that, in the absence of data, all he could do was make a somewhat educated guess, guided by the following principles: Coronavirus in cancer patients: bad. Vaccines: good. The new mRNA vaccine: highly effective. Inoculating me against COVID-19: good. The only downside, he said (as he noted in his email) was that there was a theoretical chance that because both nivolumab and the mRNA coronavirus vaccine rev up the immune system, adding the mRNA vaccine to my system ran the risk of overstimulating my immune system. He had no data on which to assess the probabilities or risks. On balance, though, he thought that the benefits of getting the vaccine far outweighed the risks.

As we were meeting, the FDA's science advisory panel announced that it had approved Pfizer’s vaccine for emergency use. Doses are being distributed to all 50 states, and inoculations will start soon. As to when the vaccine might be available to me, he could only shrug. In the US, the CDC’s Advisory Committee on Immunization Practices (ACIP) said that the first people to get the vaccine should be health care workers and residents of long-term care facilities. The ACIP currently is debating who the next group should be, but it’s likely to include adults with certain underlying medical conditions, including cancer. The problem is, these recommendations do not have the force of law, but are instead recommendations. Each state will decide how to dispense its ongoing allotment of vaccines. Utah has said that it intends to follow the federal recommendations, but details have not been forthcoming. Dr. Maughan had been told by the University of Utah that the first people in line for the vaccines were front line medical workers and residents of long term care facilities, but he had no information of when those people (including himself) would be vaccinated, or when the next groups of people (perhaps including me) might have it available.  

The UK, which is the first country to approve the Pfizer vaccine, classified patients having immunotherapy or other continuing antibody treatments for cancer as “clinically extremely vulnerable.” Using the UK’s provisional priority list, such patients are placed in slot #4 for getting the vaccine, which is the same category as people over age 70. Whether the US, and the State of Utah, will follow suit remains to be determined. I told Dr. Maughan that I would look to him to advise me when I could get the vaccine, and he said that he would do so.


While we were talking about vaccines, the results of my CT scans were posted. The scans of my neck, abdomen, and pelvis were unremarkable. In my chest scan, however, the radiologist noted the presence of a new node measuring 9 mm in length located deep in my chest between my heart and thorax. The node did not “light up” in reaction to the contrast, suggesting that there was no active metastatic activity, but it’s still something to bear watching. It’s in a location that has not previously had metastatic growth, but since my cancer was in my lymph node system, it could pop up anywhere.


Dr. Maughan said that he did not recommend going back on monotherapy with nivolumab at this time, but that if I felt strongly to the contrary, he was ok with that too. I told him that the last time I’d gone off nivolumab, it was 15 months before my mets had returned. He said that there was no definitive indication that my mets were back now, and I reassured him that I was merely expressing my expectations that, at some point, my cancer would return. Dr. Maughan said that the ongoing data for nivolumab monotherapy did not point to a long-term durable remission (or “cure”, to use that wonderfully imprecise layperson term). The long-term duration for “no evidence of disease” (NED) for patients on single agent immunotherapy kept trending towards zero. But, he noted, the long-term data for combination therapies was much more promising. Those therapies could include Padcev, or ipi/nivo, or even ipi/nivo/cabo, as Dr. Andrea Apolo has been evaluating. I told Dr. Maughan that I fully expected that, once my mets returned, my next therapy would be a combination therapy, and I would look to him for his advice, along with Drs. Apolo and Hahn. Until then, I said, I was going skiing.

Thursday, September 10, 2020

Surveillance CT scan and more

Today I had my first surveillance CT scan since suspending my immunotherapy in June. The process was identical to most of my prior 40+ scans: drink the contrast; have an IV placed and my labs drawn (only one blown vein); have the scans of my neck, chest, abdomen and pelvis; visit with the medical staff; then drink lots of Diet Coke to wash the contrast out of my system. According to Lindsey, Dr. Maughan’s PA, the preliminary scan readings showed no tumors or other metastatic activity. Yay! I've become pretty blasé about the whole process. A scan shows what's already happening in my body, and that's nothing to be afraid of. I'll continue these scans for every 12 weeks for (probably) the rest of my life. I fully expect that, at some point, a scan will show that my metastatic tumors have returned. At that point, I'll confer with my medical team and we'll determine the best therapy. Maybe that will work, maybe it won't. But it's nothing to get chuffed about right now. I’m just happy to continue my NED (no evidence of disease) status.

Speaking of NED’s excellent adventure, I've abandoned my plans to build a house. I made that decision in mid-July after two realizations: First, Jennifer's doctors told me that she was continuing to decline, and that there was virtually no chance that she ever would be able to leave assisted living and live with me at home. So the reason for me to design and build a home that could accommodate Jennifer (walker/wheelchair friendly, no accessible stairs, the ability to restrict access to dangerous places like the kitchen, and controls on exterior doors) no longer existed. Second, my efforts to find a contractor who would agree to build my house for less than a million dollars were not going well. I received quotes from four different contractors. I learned that the demand for housing in Utah was so great that the building trades could name their price and get it. Construction labor costs went up more than 25% in 2019, and the increases this year are on track to be even greater. After dozens meetings with those four different builders, I realized in early July that the compromises I was making to keep down the costs had turned the planned house into something I was no longer interested in building.

Serendipitously, a week after these two revelations, the owner of the house next door to Chelsea, Josh, and the grandkids, announced that he was being transferred back East to help build pharmaceutical plants for manufacturing Coronavirus drugs. I proposed that I buy his house, and in 30 seconds we agreed on a price and shook hands on the deal. I closed late last month. It was the easiest house purchase ever, since it was an all-cash deal. The title company came to my house and needed only two signatures. It’s a 40 year old split entry, which along with disco and bell bottoms was all the rage in the 1970s. Upstairs are two bedrooms, one bath, a living room, and dining room/kitchen in about 950 square feet. Downstairs is another 950 SF with two bedrooms, a bathroom, a family room, small kitchenette, laundry room, and storage area. There is a two car garage separated by a covered breezeway. Out back there is a 12x12 deck and a concrete patio. It sits on an acre of land. The house was recently renovated, with a new roof and siding and a new kitchen. It is unpretentious and is sufficient for my needs.

Spencer accepted my invitation to move into the basement. I have a bedroom and office upstairs, and he has a bedroom and office downstairs. In the past two weeks I’ve yanked out an old freestanding wood burning stove and the stone surrounding it and drywalled it up, gaining about 40 SF in the living room; had carpet installed; arranged for replacement windows; had a washer and dryer delivered and installed; and most importantly, added a hot tub. I have missed having a spa and have been using the new one every day. I also got a hot tub for the Slade’s to thank them for letting me park my fifth wheel next to their house for the past two years. I’ve listed the trailer for sale, and once that’s gone I’ll probably sell my diesel dually. I’m thinking of getting a Gladiator, since I miss having a convertible but want something that can pull my boat.

I feel like I’m staggering through 2020. It’s been a crazy year, between the Coronavirus and the quarantine of assisted living facilities cutting me off from Jennifer for months. Yesterday I was talking with my daughters about how much of Jennifer’s recent decline has been due to her frontotemporal dementia, as opposed to the decrease activity and interaction due to the quarantine. I think it’s a combination of the two, but even when I was able to start seeing her again regularly in July, she continued to decline. She now requires substantial assistance with virtually all of her activities of daily living. Her speech has slowed and interactions typically consist of her repeating the last thing that was said. She struggles with movement: her gait is an uncertain slow shuffle, and she cannot meaningfully engage in physical therapy. She needs assistance in getting up from sitting. In the middle of the night she sometimes slowly rolls out of bed onto the floor. The staff at Layton Park has suggested that she meets the criteria for hospice care, which means that she would have an additional level of care and increased frequency of visits by dedicated specialists. Hospice care also gives the staff more latitude in how they can help her. The nurse at Layton Park warned that, if we did not agree to allow Jennifer to enter hospice care, there soon would come a time that they could no longer legally provide the level of care that Jennifer needed, but would instead have to transfer her to a skilled nursing facility. They stressed that they were not trying to transfer her but needed to comply with the state and county regulations regarding long-term care facilities, especially because the government had stepped up its auditing during the Coronavirus. We agreed to have Jennifer evaluated by the hospice care service, and they agreed that Jennifer met their requirements.

One of the requirements of hospice is that the patient is diagnosed with a condition that could lead to death within six months. The hospice nurse and social worker said that Jennifer’s FTD qualified, even though she could live for much longer. They urged us as a family not to focus on that, but to instead see how her entering hospice would provide greater care. It took a little while for us to come around to it, but I think we’ve all acknowledged that this is in Jennifer’s best interest. But it’s another milestone in Jennifer’s decline that no one was eager to see.

Only four more months of this annus horribilis. Perhaps by the end of the year we will be relieved from this plague that has been scouring over our country and driving people to distraction. But enough about national politics. Hopefully life will get back to normal in 2021. I’m just biden time until then.