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!

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:

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.

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.