by Robert Lanz, LCSW
I thought about my surfing buddy and neighbor in Mexico, Woody. “All I want to do is smoke pot, play the blues and surf.” And that’s what he did until he got cancer. Then he went home and died. We buried his ashes near his favorite surf spot with his headstone reading “Gone Surfing”. And my other surf buddy also in Mexico told me he thought he got cancer when he was in Vietnam in the Marines. He went home to Oregon and died too. He has Charlie’s Trail, a mountain bike trek , named after him.
And I thought about my friend Rita, the pediatric social worker upstairs who nurtured me through the early years of the horrors of the child abuse team. She came into the ER one night as a patient and died a few months later from liver cancer.
My writing partner Mindy, one of the first female paramedics in our town, a true inspiration, had such a long battle with cancer I thought she would win. She didn’t. And my favorite nurse Margo who flirted with me for twenty years as we aged together on the night shift. She frequently left our ER to go to a better place where she could more easily ride her horse, but she always came back to us. Well, not always. She really is in a better place now I guess.
When I was racing cars in the eighties my friend and staff physician Andy was there with me and other racers used to kid us that we were the only race team that had our own ER doc. Pancreatic cancer took him so fast we didn’t have much of chance to give him the proper send off.
And I miss Carole, one of my own night shift social workers, gone at age 37 to breast cancer and Beverly the night shift nurse who did the same. And after saving The Last Dance For Me, my favorite charge nurse died too.
My neighbor Sal died of throat cancer shortly after I was diagnosed with it. Then another old friend and neighbor from high school came out of remission and died just about the time I finally started to feel confident that I wouldn’t.
And when it looked for sure like I would be OK I was called by an upstairs social worker from my own hospital to visit one of my oldest friends, surfing and skiing together most of our lives. He was dying from head and neck cancer and we only had enough time for a few more stories, bench surfing I guess and then he was gone too.
Two friends and a neighbor in the year I was sick myself, gone. A year of being sick. It was a very sick year…Bob
Like any smart guy at that time I got my PSA checked annually. Finally one year, the results were slightly elevated but not by much, and the body of scientific literature on the subject was nothing compared to what it is today. In some ways I’m glad it wasn’t.
The mysteries of an elevated PSA vexed a lot of guys in may age group (I was sixty-two at the time), including my internist of fifteen years and who wasn’t sure what to do. Same with my previous internist, an ex-ER doctor and long time friend. He had borderline PSA’s himself and he didn’t know what to do either. When a couple of guys you’ve trusted your life with for more than twenty years don’t know what to do, it’s beyond disheartening and this became a real fear factor situation. The idea that something might have been cooking inside of me and no one knew what to do except “watch and wait” created some severe anxiety. When you work in the ER and see people go from well to ill in the blink of an eye, denial is not an option. Watching and waiting didn’t seem like much of an option either.
My older brother settled the watch and wait matter a week later when he called me to drop the bomb that he had been diagnosed with prostate cancer. I was on the phone the next morning and at my internist’s office that afternoon. The cancer diagnosis in a first degree relative was the tipping point and I was off to the urologists for a biopsy. I won’t bore you with the details of that old story except to say that it was a grind. Surgery. Catheters. Diapers, Viagra and all the other things that guys often avoid at the risk of dying rather then living with these possible side effects of prostate treatment. Not me. I was only sixty-two and with longevity in my family genes, I figured I had another thirty years in the bag.
A year later, everything was working fine and I experienced only a brief scare when my surgical biopsy showed that some cancer cells had escaped my prostate gland and were found in the soft tissue right next to it. Luckily, that turned out to be a big nothing and my ensuing annual PSA tests were zeros. After five years everyone said “You’re cancer free”, and I was. Free from prostate cancer at least.
Lance Armstrong is used as an example for many things, some good and some bad but mostly bad on the point of pathology as we now know with certainty. In the documentary film, “The Armstrong Lie”, he talks about the progression of his testicular cancer. A testicle the size of a lemon. Abdominal pain. Coughing up blood. Headaches and double vision. But through the pathology of denial he didn’t seek medical care and the cancer metastasized all the way north to his head and he had to have a tumor removed from his brain. A year of denial almost killed him.
After having prostate cancer, I found his book about his cancer experience compelling.
So one morning, three years after having retired from the ER, I lathered up for a shave. When I pulled my facial skin tight to even out the wrinkles and provide a smoother surface for the razor, I felt a large lump just below my jaw. Without a second thought I set the razor down and felt the other side of my neck. It was normal. No swelling there. Bad news in a way. Nothing is a hundred percent in medicine, but an enlarged neck lymph node most commonly has a match on the other side and indicates a localized infection.
I hadn’t had any dental work recently. I was not sneezing or wheezing and I didn’t have a sore throat. Less than ten seconds after feeling the lump I knew I had cancer. Unlike Lance, there wasn’t any denial in my bag of pathological tricks.
I was on the phone to my internist immediately and in his office that afternoon. He set me up with an ENT doc for a consult the next day. That doc thought I was over-reacting and advised the “watch and wait” approach. Easy for him to say. I thought he was too young to know much about things like that and he sort of dismissed my take on it. After all, he was two years old when I started working in the ER and I knew my own body. He thought it was impossible to tell without some tests so he stuck a needle into my lymph node and set me up for a PET scan. The scan was positive but the needle biopsy wasn’t. Two weeks later I was at the outpatient surgery center and had a throat biopsy. Positive for high grade squamous cell dysplasia, the last stop before carcinoma on the arc from totally normal to the “Big C”. Should I fire that youngster and go to a cancer-only hospital? Positive.
At the cancer-only hospital I was set up with an interventional radiologist. He did another lymph node biopsy, this time the right way, guided by an ultra sound machine. It was positive. Two weeks later I was in the chief throat surgeon’s office. By this time I had had so many positive biopsies that everyone pretty much knew I had squamous cell carcinoma, and the surgeon was almost a hundred percent sure it was the HPV 16 type.
“I like to do my own workups,” she said. “So we’ll have to start again.”
That was a meaningful statement for me. A couple of times in the ER, I had depended on some other person’s opinion when I was too busy to do my own workup and it ended badly. I put my hand on her arm and gave it a little squeeze.
“You got the gig.”
The nurse, the nurse practioner and the surgical resident apparently weren’t used to seeing endearing physical contact on the first date and acted like they didn’t see the move. In spite of my mounting trepidation, I felt that this was going to be an interesting journey.
Believing that the second deep throat biopsy would be a simple four-hour deal like the previous one at the outpatient surgery center, I asked one of my nurse friends to drop me off. He left his number, thinking he’d be back soon. I thought so, too.
I woke up groggy in unfamiliar territory. It sure as hell didn’t look like a recovery room to me. My surgeon was standing directly under a clock that said 11:00 exactly. Hmmm. That’s strange I thought. The surgery started at ten and there was my surgeon, right on time, saying through my fog, “We did good. I think we got it all.” She left pretty quickly. Five minutes later I noticed it was still eleven o’clock. I was really stoned and unable to figure out what had happened. When I saw the ICU sign outside my door I thought most likely I had gone into cardiac arrest during the procedure and had to be resuscitated.
“Hey, what day is it anyway and I think I’m hallucinating,” I yelled out to no one in particular. Most nurses wore scrubs and in thirty years I’d never seen one topless-not at work anyway, and yet there they were, coming in and out of my room topless. It was very confusing for several hours. At least I think it was several hours. The clock was still on eleven.
I hit the buzzer and called the nurse into my room. She had all her clothes on so I figured it was safe to talk to her.
“Look” I said “I spent thirty years in health care so I want to approach this as delicately as possible. If it wouldn’t get you in trouble with my surgeon can you tell me exactly what happened?” Just to be sure I was returning to my right mind I told her about the topless nurses.
“Propofol” she responded. “You were in the ICU on a Propofol drip for twenty two hours. You know, that Michael Jackson thing.”
Yeah, I thought. That Propofol thing that killed him. Luckily, I’d gotten off the bus at the topless nurse stop, but I did have a better appreciation for why Mr. Jackson liked it so much. He probably didn’t hallucinate topless nurses, but you get the picture.
“During your biopsy, the doc saw a band of sick cells at the base of your tongue and decided since she was already down there she might as well laser that zone so you could get a jump on the chemo and radiation coming your way. There was already a breathing tube and a fiber optic scope down there so to make room they had to grab your tongue with a big pair of forceps and pull it out, way out, to make room. That traumatized your tongue and they were afraid of swelling so they had you on the ventilator for almost twenty four hours in ICU. you had a Propofol drip the whole time and it might effect your memory.”
And my vision too, I was thinking. “What time is it, anyway?”
“The clock says eleven.”
“It always says eleven.”
“Your memory is coming back.”
She wrote something in her nursing notes and left.
WTF. Now I’m the catcher, not the pitcher and I’m being tested after being on a Propofol drip for twenty-four hours. Maybe I shouldn’t have mentioned the topless nurses. Most likely, I failed that part of the memory quiz, too.
The next time my nurse came back it probably seemed like I was flirting with her because, well, I’m a man and she’s a woman and a beautiful one according to the notes I was now taking, too. We talked about working in hospitals and other professional matters. I told her a couple of funny ER anecdotes and she laughed. Maybe she was flirting back with me. Or maybe it was the Propofol.
Anyway, at change of shift the new nurse came in and introduced herself. She was sweet. She kept her clothes on and I could remember her name. Which is a lot better than with the previous nurse who, it seemed, I felt closer to. Or maybe it was that twenty-four hour drip. I consulted my notes but couldn’t tell.
Gradually, over the next twenty hours, I rebooted my brain. Told a few more funny stories, took a couple of calls from my wife and friends who were pretty worried. The nurse friend who had dropped me off for the biopsy was freaking out waiting for a call to come and pick me up. He thought I might have coded, too.
When you’ve had your tongue seriously tweaked, even after twenty four hours in ICU, there is still some danger, so I couldn’t lay flat to sleep. Sitting up at a forty-five degree angle brought back memories of when I had epiglotitis. I couldn’t sleep then, either. Maybe my time on Propofol would have to do it for me sleep-wise for a few days.
I guess I passed the rest of the memory tests because they let me go home the next day. Fifty hours later than I had originally planned. I was able to remember my second and third shift nurses names but not the name of the pretty one, and that isn’t like me. Must have been the drugs. Maybe it was the drugs that had me in denial, too, taking what my surgeon said literally when she told me she thought they had gotten it all. Not like me either.
I was disappointed the following week when I went for my post surgical follow-up and confirmation of the throat biopsy. They hadn’t hit any cancer spots in my throat, just more of that high grade squamous cell dysplasia like the ENT kid had found. No matter. The positive finding in my lymph node was all that really mattered. I was given a follow-up to meet the radiologist and oncologist who would be doing my radiation and chemotherapy. First the cut. Then the burn and the poison. Adios, denial.
Luckily for me, my first day of chemotherapy-an all day affair-found me in the care of an old friend from the ER. The emergency room, especially the night shift, is so brutal, it is common for nurses, as they age out, to end up in places like cancer hospitals where the cruelties of life are still very present but at least the pace is manageable. When she saw my name on the list she bumped the scheduled nurse. That’s what any ER nurse would have done and it meant a lot to me to start that part of the journey with a friend. I had the normal amount of trepidation about my treatments and starting with a friendly face made it slightly more tolerable.
At the end of six hours of chemo (and in case you didn’t know it, the violent vomiting doesn’t start for a few days) it was down to radiation where unfortunately, I didn’t know anyone.
The first day and every subsequent day, for that matter, are a nightmare for throat cancer patients if they are at all claustrophobic. That’s me. I found that out the hard way fifteen years ago after a back injury and a trip down the MRI tube. It took twenty milligrams of Valium to get me back in the machine to finish the procedure.
It was almost as bad down there in radiology where they make a half-body mold that covers your face and head and extends all the way down to your waist. It is an open mesh mold, made up of one-inch squares so you can see OK and breath OK if you don’t have a panic attack like I had with the MRI. However, the mold is hard and it has metal snaps all along the edges. So does the stiff board you lay on when you slide into the tomography/CT machine. Because all radiation beams are so precise in their rotations around your head, it is important that you don’t move. Unless you suddenly lose a lot of weight, movement is not a problem. You might as well be nailed to a cross. Six minutes in the machine then six minutes out while the machine is calibrated with a computer and then back in the machine for six minutes or so of burn time. About twenty minutes bolted firmly to a board, looking up into a machine that is working to save your life, but it doesn’t feel like that when it’s happening. Lots of amygdala time. Torture.
They do let you bring your own music, and the radiology techs could not have been sweeter, even if they had been techs that I had known from the ER. It takes a week or so before the effects of the radiation start to kick in, right about the same time that the chemo is at full force. It’s downhill from there, even months after the treatment ends.
Some of my social work friends asked me what they should tell patients about that whole process. Simple answer. On the day you get diagnosed, start on some anti-depressant medication and eat as much of everything as you can for as long as you can because you’re sure to lose weight and you’re sure to experience the fatigue/depression effect to the point that death might feel like a welcome break in the routine. For a few days I was so fatigued and depressed that if someone would have told me “we can keep you alive as long as you want but this is how you will feel,” I’d head for the famous bridge not too far from my house and go for that big air finale. The sickness of radiation and chemo is ten times worse than seasickness and altitude sickness-both of which I’ve had. They are characterized by their unrelenting and horrible symptoms.
Cut, burn, poison, torture and at the end, death. Nothing dignified about that. Nothing heroic about that. Like a lot of patients I would try to act brave to soften the blow on my loved ones so they could better deal with the pain of my impending death. But not for long. If there was just death at the end, this wouldn’t be about them. It would be about me. Spare the torture, take me straight to death. It might be harder on everyone else but it would be a lot easier on me. At least that’s how I felt for a few days. There’s a lesson here. No one enters into grief willingly. I could help you deal with that issue by dying sooner.
A couple of weeks into the chemo and radiation, some of the bodily functions you take for granted slowly slip away. Your saliva dries up and your taste buds stop working. The radiation burns on the inside of your mouth get so bad that even custard hurts. Sometimes your mucous gets so thick (mucositis) that it fills your throat to the point of setting off your gag reflex and that causes choking that sets off your vomit reflexes. Despite all the anti-nausea medicines, you are ready to puke any time and the mucositis just hastens the process. One night it got so bad I puked myself into the dry heaves and dehydration and I had to go back to the cancer hospital, get some IV fluids and stronger anti-nausea medicine and spend the night. I threw up so hard I hurt my back and thought I might end up back in that MRI machine again for another round of torture and fear. PTSD here I come. That was just one of the nights I had fleeting regrets about my treatment, thinking I should have tried to just squeak out a year of wellness before the cancer actually began to hurt me. So far, the cancer hadn’t been a problem, but the treatments sure as hell were.
At the cancer hospital, I met other patients who had been in treatment for years. Years! Despite my thirty years of experience in health care, it was almost unfathomable to me, since I was feeling totally wimped out by the experience myself after only a few months of treatment. I should have listened to my own advice. Pass the Paxil and bring me a green chile burrito and a cold brew. Oops. Too late for that one. Can’t taste beer anymore. Can’t taste burritos either. I’m stuck with high protein green slime drinks and they hurt my radiation-burned mouth and throat. Even water tastes bad.
I discovered that losing your taste buds doesn’t mean you stop tasting things, but that you stop experiencing good tastes. Bad tastes remain and that is how almost everything tasted: bad. Road apples without benefit of having hit the road-straight from the horses ass.
Before I got sick I was a pretty robust guy for my age. I’d ride my bike around the lake where I lived almost every day. I’d go boogie boarding down at the pier during the summer and I often drove my car up to the mountains nearby to hike around. I’d even paddle out at the beach near my house in Mexico from time to time, despite the embarrassment caused by aging and not being able to catch the waves I wanted to. Three weeks into my treatment I could no longer do any of those things. It was all I could do to drive the half-hour out to the hospital to get treated every day. After that it was just couch lock, too exhausted to even nap. Just me and TV and smoothies-boring compared to the life I so recently lived. I lost so much weight, my doctors threatened to put a feeding tube into my stomach. I was borderline anemic and could barely make the hundred-yard walk back to my car after radiation.
Then it got worse. I became so fragile I had to sit down to take a shower. My blood pressure would swing almost a hundred points in a day. I was getting so dehydrated, I had to have a home IV nurse come out and hang a liter of fluids five days a week. My veins were so bad, sometimes it took ten tries to find a good one for the IV. Geez, I used to send the home health nurse out to take care of sick people and now I’m sick people and she’s at my house.
I kept forgetting about my near anemic blood counts and experienced about forty near faints just getting up from the couch, having to do a controlled roll to the floor and once not making it, getting clocked on the head by my front door. Another time, I was so exhausted and apparently looked so bad that my wife thought I had died. Her crying woke me from my stupor.
No one totally ever tells you how bad the fatigue can get. It was nothing like the fatigue my body felt after a good day of surfing or skiing which left my body tired but my mind clear and stimulated. This fatigue was the kind my suicidal patients told me about in the ER. Unrelenting negativity. Soul busting loss of caring about what would happen next. A home invasion and murder would have been a relief. I developed an acute understanding of why people jump from high places. Brutal.
I also gained a better understanding of my anorexic patients. Initially the radiation and chemo only took away my sense of taste but I retained my sense memory of food, often craving some deliciously presented meal I’d see in a TV commercial. Then gradually that was replaced with a non-sense memory of what I used to have a sense memory of. Soon, the very thought of food was repugnant to me. After losing fifty pounds, it still didn’t matter and if not for the berating from my wife and her forced smoothies, I would probably have starved to death. That didn’t matter much to me, either. Life itself didn’t matter much at that point.
I had made a full transition from a professional mental health provider to a person who no longer cared about anything. The dregs. Well, not entirely. I still feared the feeding tube and my wife, I guess.
Something clicked about that time and I had a social work/mental health epiphany: Just follow my own advice. When I told my social work colleagues what to tell their patients about the treatment experience, to start on antidepressants and pig out, I was right. Hello Paxil my old friend.
On and on it went-smoothies for breakfast, drive to the hospital, get strapped to the sliding board in the tomography room, try to avoid an anxiety attack. Drive home, have a smoothie and watch TV-well not actually watch TV, that took too much energy, more like exist in the same room as the TV. I didn’t read. Too hard to focus. Couldn’t remember anything anyway-chemo brain. Too much energy required to play my guitar. I stared at the floor for hours, then choked down another smoothie. I became acutely aware of how much I missed something as common as saliva.
Somehow, my treatment team at the hospital thought I was doing well. My radiologist scoped me and thought my throat looked good. My oncologist thought my labs looked good. I thought, felt and looked like crap.
One day I decided to actually look at the lab results myself. My blood counts were terrible. My red blood cells could barely carry enough oxygen to keep me out of the anemia zone. No wonder I had no energy. That’s when I had another epiphany. As I learned when I was studying screenwriting, context is everything. “Good” is a relative term. My throat didn’t really look “good”. My labs weren’t really “good”. My labs and throat were only good in the context of belonging to a guy who had been bombarded with chemotherapy and radiation.
“So when do I get my taste buds back?” I asked my radiologist.
“Hard to say. Takes time. Be patient. We’ll know more in three months.”
The last time I heard that line it was me saying it to a patient who kept returning to the ER after getting diagnosed with Parkinson’s seeking reassurance from me that he didn’t seem to be getting from his doctor. Now I wondered if maybe I could have spent a little more time with him. Maybe I owed him an apology since I knew exactly how he felt. We now shared a fearful level of desperation.
I have a very hard time being a patient. I have a hard time not being able to do the things I used to do physically. I have a hard time doing without some of the simple things I enjoy like eating a juicy burrito and riding my bike. It’s been a year since I finished my treatment regime and I’m still sort of sick and weak. There are about twenty things that taste OK, so I’ve had the exact same breakfast every day for eight months. Dinners have only the most minor variations and I still have to drink one of those high calorie smoothies every day. I’ve gained about fifteen pounds back and don’t look so sick any more. My hair is finally growing normally, but somehow it got curly. Half of my beard, the part on my neck where radiation was strongest, never did grow back. I’m OK with that. And I can finally taste beer.
I still have to go back to the hospital for labs every three months and then there is the three-month and the six-month scoping along with frequent lymph node groping and I’ve had my first one-year-out CT scan. Everyone seems to think the cancer is gone but no one will be definitive about it. I think it’s gone but the effects of the treatment still linger. It probably doesn’t help that I’m almost seventy years old and have had couch lock for eight months or that I’m so out of shape I don’t even bother to take my boogie board when I go to the pier and read. As we used to say in the sixties, this is a bum trip.
“Be patient, Bob. We’ll know more in six months,” all the doctors say.
Yeah, and in another six months you’ll tell me you’ll know for sure in a year. And finally after five years of this, if all the scoping and labs and scans are normal, then I’ll be cancer free. Easy for you guys to say. None of you are even forty yet. I might not have five more years and if I do, that would give me enough time to get another type of cancer and we’d have to kiss and make up and start all over. Hey, that’s PTSD talking.
Looking back with a clearer mind, I wonder if maybe I should have spent some time with the social worker at the cancer center. She would have known exactly what to say to prevent this PTSD feeling I carry around with me. She would have known exactly what to do with all my fear and anxiety. After all, she was one of my graduate students during her internship at my hospital and had a darn good teacher.
I’m not a guy who gives up easily, but I was doing some serious wavering after the second round of chemo. If an airplane had crashed into my house it would have been all right with me. It would have put an end to what seemed like endless hopelessness. That was then.
Now I’m not so hopeless. I’m taking walks. I’m taking drives in my new truck. I’ve even cleaned up my bike but haven’t ridden it yet. When I do, maybe I’ll ride over to the ER and see if anyone there wants to go to lunch.
Too bad that radiation ate my thyroid gland. Too bad I’m on meds for life on that issue. Too bad I ended up like so many of my patients with some chronic condition they hated.
but I’m alive and I can stillcatch waves on my boogie board…have to settle for that I guess….