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.