If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

Having a body is already a UX* nightmare: There’s the feeding, the cleaning, the general upkeep, the constant and varied states of discomfort (depending on your age, setting and health). When things go wrong—as they have for me, given that a squamous cell carcinoma infestation is busily working to suck up every nutrient I take in and leave what I consider to be “me” dead—they can go really, spectacularly wrong. The healthcare system is, presumably, in the business of meat-suit maintenance and optimization, much like the gym or smoothie industries, and unlike McDonald’s, and yet, if the same level of consideration was given to our bodies as is commonly given to a car being detailed, the body shop would go out of business.

Body shops for cars and body shops for humans seem to operate on different standards, although I suppose one could argue that cars are simpler than humans and better understood by humans. Mess up a little on the car, and the mechanic might have an angry customer; mess up a little on the body, and someone dies. “Good enough,” when it comes to the human body, often isn’t close to good enough. And yet, in the last year, as I’ve become a tremendous consumer of healthcare services, I’ve seen how often things don’t get done. I need a Project Manager (PM) for healthcare, and, since no one has stepped forward to project manage project Jake, Bess and I have wound up becoming janky, half-knowledgeable, struggling PMs with a vital project: make sure Jake doesn’t die.

So many aspects of treatment and recovery have seen Bess and me fighting and struggling to figure out and implement things that should’ve been explained to us, instead of us being left adrift to solve problems on our own; if not for our backgrounds, attitudes, and fortitude, I’d probably be dead right now. Bess being a doctor and me having worked extensively as a consultant in healthcare and healthcare research shouldn’t be relevant to me getting important, lifesaving care, and yet both matter. Instead of us having to jerry-rig care, learn the clinical trial process, and double check whatever we’ve been told by doctors, the whole system should work better for everyone. It shouldn’t take two reasonably bright, exceptionally determined people so much effort to navigate the healthcare system. If it’s this hard for us, what’s it like for other people—normal people who don’t have some of our experiences, expertise, endowments, or credentials? What hope do they have? Yeah, you might hear bleating from people in the healthcare system about diversity and access, but how’s that translate into action?

Bess and I feel like we’ve had to become semi-experts in oncology in order to make sure that I get the treatments most likely to ensure I don’t die sooner than I have to, given present technology. That we’ve had to assume that healthcare PM role is absurd, but if we don’t, who will? No one else is watching out for us.[1] No one else is comprehensively guiding us. So much falls through the cracks. In theory, doctors are supposed to be the experts in what’s both possible and optimal. In practice, we’ve discovered that’s frequently not the case. Opportunities for the system to automate recommendations for patients receiving chemo, PEG tubes and surgeries were also missed, putting the burden on what a doctor can remember to recommend during a short visit, as opposed to trying to streamline important processes for all patients coming through large academic centers with the capability to better automate.

As difficult as it may be to accept in the midst of a life-and-death situation, when you’re weakened, exhausted, struggling to concentrate, and relying on experts to guide your best interests, the answer to the question of “who cares?” is: no one cares as much as you and the people who love you most.

Clinical Trials

Even before the metastatic squamous cell carcinoma recurrence that’s likely to kill me, I understood intellectually that people with serious healthcare problems do better when someone—their spouse, or parent, or child—looks out and advocates for them, but I didn’t appreciated the extent to which that’s true.** The clearest example is described by Bess in “Please be dying, but not too quickly, part 1: a clinical trial story,” which tells our struggle to really understand the clinical trial system and then to find a clinical trial that might prolong my life. And we succeeded! Which is great. People love a (relatively) happy ending. But finding and entering that trial shouldn’t have been as hard as it was, and it shouldn’t have taken as much backdoor maneuvering as it did. Bess wrote “Please be dying” as a guide for other patients who find themselves in our position and don’t have as much ability to work the system as we did, and still do. I wish that writing the guide didn’t feel so necessary.

If not for our (realistically: Bess’s) efforts, I probably would’ve gotten some palliative chemo and then died. That’s the standard path for R / M HNSCC. Multiple oncologists independently encouraged us to pursue the “chemo-then-die” path. I found their encouragement of me to roll over into the grave prematurely curious. Isn’t their job to help people not die? Isn’t that what being a doctor is? To be sure, giving false hope is bad, and there’s a lot of futile end-of-life care in medicine, especially in oncology. Bess and I wanted to make sure, though, that accepting death was the only option. I’m not irrational: I know fruit diets or protein diets or coffee enemas or hydroxychloroquine or whatever else Internet people pitch won’t work. Yet we found good trials for R / M HNSCC, and one oncologist called head and neck cancer “a hot R & D area.”

Which is why it’s so wild that so many oncologists dismissed clinical trials as futile, or too much effort for the likely outcome. Do they know how much effort it takes to go through palliative chemo for the certain outcome of death? Now that I see what went into finding the trial and getting me into the trial—the trial that is successfully shrinking my tumors and keeping me alive—I can’t help but wonder: too much effort for whom? That I’m able to write this is a testament to the virtue of ignoring some medical advice and seeking advice from outside the standard system.  

Nausea drugs for chemotherapy

The lack of aid around clinical trials is the most egregious example of medical oversight, but it’s not the only one. I got two rounds of chemo, one on July 24 and the other August 14; the chemo consisted of carboplatin and paclitaxel. The former is in particular a notorious fomenter of nausea. Bess and I asked the oncology care team at the Mayo Clinic Phoenix about the plan for nausea. They wanted to use Zofran and a single IV dose of emend (“Aprepitant”) during the infusion, and Zofran and compazine at home. “That’s it?” Bess and I said to each other. She’s given more robust antiemetic regimens to patients coming to the ER for a seasonal GI bug. I’ve had cisplatin, one of carboplatin’s evil cousins, and consequently suffered from intense nausea. “We’ll see how it goes,” was the reply. No one mentioned that having had a platinum chemo in the past increased the likelihood of vomiting from future platinum chemo. Fortunately, Bess and I have a friend who could help guide us, and with help we rattled for a more serious regimen: Emend, Zofran, Ativan (as needed), and olanzapine. Why take only one dose of Emend? Nothing we could find indicated that it’s dangerous to take it for a few days. Studies show a 3-7 day course are both clinically safe, and a three-day course is the most frequently provided.

Emend is generic and we found it for $50 to $300 a dose in pharmacies, so it’s not expensive. Compazine was approved in 1956 and olanzapine in 1996; the latter has been studied for chemotherapy-induced nausea and vomiting (CINV). Why use the older med? Ativan is a useful backup. Maybe the Emend and Zofran alone would’ve worked, but it’s easier to remove meds if they seem unneeded than it is to stop nausea and vomiting once they start. Oncology ordered our requested medications, and the palliative care team added on the ones that they forgot. Instead of waiting to see how badly I’d suffer, I didn’t vomit once and discontinued the olanzapine while continuing the other meds the week of chemo.

Why are we rolling our own medication list?

Port access should have made things “easier”

I have a port catheter inserted on the right side of my chest, just south of the collar bone. The day after the port was surgically installed by interventional radiology (IR), I needed to get blood drawn. I told the nurse about the new port, or the nurse saw the port in my chart, and he said he could use it. I said okay, not knowing much about the port, except that it’s supposed to be more convenient and less painful than getting my arms routinely stuck. The nurse inserted what seemed (and seems) to me a massive needle straight into it, and I felt the kind of pain that made me yelp and see space. It was insane. I got home and told Bess about what had happened. “Didn’t they give you numbing medication?” she asked.

“Numbing medication?” I replied.

Turns out that you can put topical lidocaine on the port to numb it, and/or nurses can use a tiny needle to inject a tiny amount of lidocaine before the big needle goes in. No one told me. Neither did anyone call in a prescription for a topical numbing medicine and instructions to use it forty minutes before the port was accessed to avoid the pain of being literally stabbed in the chest with a large bore needle. When Bess asked for the prescription, it was called in (notice a theme?). But no one told me ahead of time, or seemed to even consider that a fresh, bruised port, would hurt when accessed. Why not?

PEG tube

I had a PEG tube installed while I was in the hospital between May 25 and June 5, and for several months the PEG tube was the exclusive means by which I got calories. This is what said tube looked like, until recently:

As you can see, the damn thing sticks like six inches out, so it’s forever flopping around and getting caught on things. I relied on it to not die of starvation, which made this little item the most-interfaced with bit of medical equipment after my trache came out. Because of the constant in and out of the tube, the tissue gets irritated and forms painful masses of “granulation tissue” that requires steroids.

The white thing parallel to the tube itself is a “Grip-Lok” adhesive system, which I was constantly changing and which left my skin messed up. Showering was unsatisfying because of the Grip-Lok. Hugs were fraught. The damn thing kept getting caught on my shirt whenever I moved my arms. I struggled to gain weight, but the PEG tube also meant that I struggled to lift weights at the gym, because of the way it entangled with my shirt.

The PEG tube caused other problems; on Dec. 13, for example, the PEG tube inadvertently opened. Maybe it got caught in my belt or my shirt or something. Whatever the cause, stomach acid and partially digested Liquid Hope spewed all over me and the floor, which is both painful and gross: it smells like vomit (cause it is vomit). An open PEG tube literally spills calories out of me, and the resulting mess is hard to clean. So many things about my present (and permanent) condition are frustrating, like the tube opening, which makes an already physically and existentially difficult situation that much more frustrating. I can’t ignore a six-inch tube protruding from my body, and I have to interact with it multiple times a day to stay alive.

PEG tubes are supposed to last six months. Between June 5 and now, I had to go to the emergency room three times for tube problems: once because the tube slipped out of my stomach because the balloon had ruptured, and twice because the tube began leaking from the place where I (properly) kinked it. I know I properly kink it because I’ve checked with the education nurses to make sure I wasn’t inadvertently doing something wrong.

The third time happened Thanksgiving evening. Bess and I were lucky that the ER was relatively quiet, and one of her colleagues was able to locate a new tube and install it expeditiously. Still, hardly anyone wants to spend extra time in the ER.

The oncologist supervising me for the petosemtamab clinical trial at UCSD is named Dr. Sacco, and when I mentioned the Thanksgiving ER visit, she suggested I get a “button tube.”

“What’s that?” I asked.

She explained that it’s possible to install a PEG tube that’s low profile and comes with a detachable exterior tube (it’s also called a “mic-key” tube—as in much of medicine or the military, why use one term when you can use a bunch?). Bess followed up with my gastroenterologist, who said a button tube sounds like “a great idea, let’s do it.” We asked if one could be installed and, much like requesting necessary prescriptions, it was scheduled right away. Which is nice, but, also, why didn’t she tell me that the smaller, more humane tube is an option? Why were we once again having to direct my care in order to actually be cared for? The GI doc knew about my prior tube problems. Why do Bess and I have to figure this out? Neither of us are PEG tube experts. Instead of the system I used to have, my current situation looks like this:

That tiny nubbin is far easier to wrangle than the giant hose. Now the PEG tube doesn’t get caught on my shirt, or in my pants, or, potentially, on other objects. If it opens, nothing happens. Nothing, because I have to pop in an extension tube to inject. No spew. I don’t feel it rustling every time I move. Bess can hug me without coming at me from a ninety degree angle to avoid moving the tube. It turns out that installing the protruding PEG tube is standard the first time someone gets a new tube, but after two months the tract into the stomach heals and anyone can get a button tube.

So I could’ve gotten a button tube back in, say, August or September, and saved myself tremendous hassle. I asked the nurses who showed me the button tube what the downsides are, and they said that older people who don’t have good eyesight or dexterity may struggle to get the tube itself inserted and removed. Neither applies to me. For me, the button tube is all benefit. Yet I didn’t realize that a better PEG tube system is possible. So much of medicine is left to coincidence and circumstance, and I didn’t know what to ask. We didn’t know that we didn’t know.

Showering is even pleasant again! Maybe I’ll get in a pool somewhere? It’s been so long. 

Phone calls to a man with no tongue and a trache in his neck

My tongue was removed and a “flap” installed on May 25. I got out of the hospital on Monday, June 5. Given that I had a tracheostomy tube in my throat and a massive, inflated flap of muscle in my mouth, I couldn’t talk. Yet that didn’t stop an incredible barrage of phone calls in the following two weeks. At the time, I wrote to friends and family:

Mayo clinic does everything via phone call. Given that they have a sizable ENT practice, which includes a large patient panel of people whose larynxes and voice boxes they have surgically removed, meaning many of their can’t speak, not incorporating texting-based contact seems bizarre. All these people call and leave messages asking me to call them back—but I can’t! Bess can, but she’s at the end of her tether too.

My sister stayed with me during that period, and she found the same:

On the topic of “remarkable,” albeit lacking positivity, is the sheer volume of calls and information directed at you daily. Your call log is just a fraction of what you’re dealing with. and possibly the most outrageous part of it all is the sound of surprise when the person on the other line (typically from insurance, mayo or other medical-related entity who should have access to your immediate medical history) when they learn, yet again, that you cannot speak.

Let’s say Bess wasn’t helping me. How would I handle all those calls? Shouldn’t there be a system for contacting people who can’t speak? I’d ask what would’ve happened if Bess couldn’t speak either, but now we know: Bess has just had vocal chord surgery, and whenever she gets a call she can whistle hello, and I can try to speak, and usually people just hang up and don’t call back. They must think they’re being pranked.

How about some gastrointestinal distress?

I wrote about this here, but I was initially prescribed an injectable food-like substance to subsist on, calorically:

I shuffled like a zombie, my left leg weakened from the taking of muscle. Inability to sleep due to snot and mucus meant that I lived in a foggy haze. Any food I ingested came from a horrible Nestlé product called “Nutren® 2.0.” Sample ingredients, taken from the Nestlé Health Science (science?) Nutren® 2.0 website:

    WATER, CORN SYRUP, CALCIUM-POTASSIUM, CASEINATE (FROM MILK), MEDIUM-CHAIN TRIGLYCERIDES, (FROM COCONUT AND PALM KERNEL OIL), MALTODEXTRIN, SUGAR, CANOLA OIL, SOY LECITHIN, CORN OIL

I don’t think humans are meant to survive on sugar (not just one kind, but two are listed there), soy, palm kernel oil, and canola oil. I’ve never heard anyone recommend to a convalescing patient that they will get better faster on, exclusively, McDonald’s and ice cream (though you wouldn’t know it from reading hospital menus). But the Nutren® 2.0 edible food-like substance was on hand and probably easier on my stomach than real food. The Nutren® 2.0 first got injected by naso-gastric tube, a sensation that felt like postnasal drip I was expected to eat; maybe six or seven days after the surgery, interventional radiology (IR) punctured a hole through my abdomen and into my stomach to place a peg tube. That was better than the nose tube, except for the process of having it placed.

Later, however, I learned:

if you have to “eat” via peg tube, Functional Formularies’ Liquid Hope product is what you want, since it’s composed of recognizable ingredients that might offer some nutritional value

Someone from Mayo must’ve told Bess and me about how much better Liquid Hope is than Nutren 2.0 or Boost, right? “LOL,” as they say. Nope. A friend did. I wrote a friends and family email about how horrible Nutren 2.0 and Boost are, and said friend told Bess and me about Liquid Hope, since I’m not the first person to have perused the ingredient list of synthetic food-like substances and found those substances wanting. How could anyone with any awareness of basic human metabolism say to themselves: you know what people recovering from major cancer-surgery need to develop on top of everything else? Insulin resistance. The nutritionists I talked to during nutritional counseling seemed only to count calories. Counting calories is fine, and there are circumstances where people have major gastrointestinal disorders that prevent them from digesting normally, but there’s more to food and nutrition than the number of calories. If this is obvious to me, and anyone who’s read Michael Pollan, why isn’t it obvious to them?

It’s happening to everyone

It’s not just me: We have a friend who’s been trying to get pregnant via IVF for a while. She’s worked with two IVF docs, and one suggested an extra cycle of egg harvesting to make additional embryos in case she and her husband wanted extra options in the future, since they want two kids and she’s already 40. Six months in egg age can drastically change the ability to make embryos, and it’s recommended that women bank three embryos for every one child they want, since embryo transfers only “stick” 60% of the time (“stick” is the technical term). If they don’t bank embryos now, by the time she’s done with the first pregnancy, it may be too late to produce and harvest healthy eggs for another.

Our friend said to her other IVF doc: “Hey, do you think it’d be useful to do more egg harvesting?” And, in her account, the other doc was like: “That’s a great idea, I think more now is always better, let’s do it.” And our friend was like (mentally): “WTF? Why am I telling YOU this? You’re the fucking reproductive medicine doctor! If you think it’s such a great idea, why didn’t YOU suggest it to ME?” That same feeling has pervaded my cancer treatment. Even the words are similar to those I’ve heard from some of my docs. Why isn’t more of the IVF stuff standardized? Why is our friend only getting care that the doc thinks is great because our friend suggests it? The IVF doc is the expert, right? Shouldn’t the IVF doc know what to do and how to do it? Why is her patient guiding her, instead of her guiding the patient?

Another example, another friend. The other friend, who we’ll call Ashley, found a lump in her breast. She went to see her primary care doc, who felt the lump and said it’s nothing. A year later, the lump is still there, and Ashley is nervous. She works in healthcare, so she gets a friend of hers to write her for a mammogram and ultrasound. The lump is a highly unusual cancer, but definitely cancer. Will the year cost her her life? It’s going to cost her the breast at minimum, and her breast might’ve been saved by more timely intervention. What if Ashley hadn’t worked in healthcare and hadn’t followed up? What if she’d listened to her doctor?

I’m sensitive to the overly extreme role that lawyers play in the healthcare system, especially being married to an ER doc, but I think Ashley should really get a lawyer.

Part II is here. If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. I’ve also written about “The dead and dying at the gates of oncology clinical trials.”

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* “User experience,” the dark cousin of “user interface.” When you get frustrated by a badly designed website, the problem is often one of UX/UI.  

** I thought its importance a 20 on a 100 point scale, but now I think it’s more like 55.

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[1] The doctors who Bess chased down, queried, texted, called, and otherwise begged for help did offer their perspectives and, in a few cases, a very large quantity of their donated time, for which we’re incredibly grateful. If you’re one of those people, thank you! But if we hadn’t spent countless hours and resources trying to access them in the first place, we’d’ve never been privy to some recommendations and suggestions that were pivotal in decision-making.