Friday, March 19, 2010
On a dark mountain highway, cool wind ‘stead of hair
Warm smell of new sunscreen, rising up through the air
Up ahead in the distance, I saw a hospital light
Lymph nodes grew heavy, prognosis grew dimmer
I had to stop for the fight.
There she stood in the doorway;
I heard the clinic bell
And I was thinking to myself
‘This could be heaven or this could be Hell’
Then she picked up a clipboard and she showed me the way
There were nurses down the corridor,
I thought I heard them say…
Welcome to the Hotel Melanoma
Such a lovely place (such a lovely place)
What a lovely case.
Plenty of meds at the Hotel MelanomaAny time of year (any time of year) you can find them here
Her mind is Ativan-twisted, she got the Thorazine bends
She got a lot of pretty, pretty docs, that she calls friends
Should she tan in the courtyard, sweet summer sweat
Some tan to remember, some tan to forget
So I called up my Doctor,
‘Please bring me my wine’
He said, ‘we haven’t done that treatment here since nineteen sixty-nine’
And still those nurses are calling from far away,
Wake you up in the middle of the night
Just to hear them say…
Welcome to the Hotel Melanoma
Such a lovely place (such a lovely place)
Such a lovely case
They livin’ it up at the Hotel Melanoma
What a nice surprise (what a nice surprise), bring your tumor slides
Scanners on the ceiling,
The pink Zofran on ice
And she said, ‘we will always be patients here, of our own device’
And in the surgeon’s chambers,
They gathered for the feast
They stab it with their steely knives
But they just can’t kill the beast
Last thing I remember, I was
Running for the door
I had to find the passage back to the place I was before
‘Relax’ said the night nurse,
‘We are programmed to receive.
You can check out any time you like,
But you can never leave!’
My deepest apologies to the Eagles….
What follows is a journal about one cancer survivor’s experiences, in dealing with Stage III melanoma. I believe them to be quite ordinary, but only other survivors can be the judges of that.
I started writing this in the early spring of 2007 for purely selfish reasons- hoping that talking to myself in this fashion would prove to be therapeutic- and thinking I’d have my say, be done with it and shut up. But after months of sporadically tapping away at the keyboard whenever inspired to journal-on, it dawned on me that I didn’t exactly like the implications of “finishing” this thing. So, I continue to write, thinking (perhaps a reflection of an overblown ego?) there’s a little something in these pages worth sharing with others walking the cancer path. Although a book deal and whopping advance check seem quite unlikely.
Because much of this was not written contemporaneously with the events, it wouldn’t satisfy a journalist or historian’s standards for factual accuracy. Sorry, but I’m writing about things that occurred a while back, and they often happened during times of great stress and when I was quite impaired by various and sundry medications. There’s also the gradually lifting fog of “chemo brain” that still makes some details a little hazy. And, I’m writing about complex medical matters and procedures, which as a non-physician I don’t fully understand and were explained to me by medical professionals with varying levels of detail and thoroughness. (One of the themes of this tome is that doctors aren’t always the most informative communicators.) I considered attempting to get copies of all of my pertinent medical records for the sake of fact-checking all the medical stuff I write about, but was turned away by the bureaucracy and expense involved in obtaining one’s own records. Should it be that hard? Finally, I won’t say when, but sometimes I may be guilty of omitting graphic details or ever so slightly embellishing stories for the sake of delicacy, humor and making my points. In any event, my memories are what they are—the indelible foundation for writing about a profound life experience, which in many ways has been a blessing.
I apologize up front to the health care profession for ranting about how you sometimes deal and communicate with patients. While I am quite grateful to you folks for your first-rate care, most often delivered with great skill, kindness and compassion, I must say that talking with you is often quite frustrating. Too often, it seemed like I had to employ my very mediocre skills in deposing witnesses when talking with you about my treatment and prospects; I had to ask the right questions in order to find things out, particularly good news. I believe, however, that this frustration is a healthy thing for a cancer survivor; it’s a manifestation of a strong fighting spirit that has nothing to punch at today except you. And, I’d like to think you’re as frustrated as me and you’d like to spend more time talking with patients rather than careening from one to another in the course of a harried and hectic day.
Life as a cancer survivor is surely a gift. At the same time, it’s a series of tough exams with no diploma and graduation ceremony being dangled as bait at the end of your studies. The only finish line in this marathon is one you don’t ever wish to reach. I’ve gradually come to understand that in June of 2003 I checked into the Hotel Melanoma—“you can check out any time you like, but you can never leave!” That’s at least one too many metaphors, but subtlety is not one of the strong points of my writing….
One last thing before I begin my story. My spouse, family and friends probably don’t know how critical they all were and are as my reasons to fight and survive, because I’m lousy about telling people these things. My beloved golden retriever is without a doubt clueless about his invaluable contributions in nursing and rehabilitation care. Last but not least, a fellow cancer survivor’s tenacity and spirit have inspired me to write all of this down, and our e-mail conversations have been a source of insight about our shared experiences. Thank you all.
On June 13, 2003 I turned 50 years old, thinking life was pretty good and still full of promise. I still had my first wife, a graying but full head of hair, my law license in two states, a good dog, and no outstanding warrants. I was even working, albeit at a glacial and procrastinating pace, on matters of faith. Most days I didn’t much like showing up at the law office to keep doing the same old stuff, but I had the option of making a change from that. Little did I know that life was about to take an adventure-filled turn.
A few days later, I received an unexpected phone call from my family physician. Those biopsy samples of a tiny mole he’d spotted in a routine physical contained malignant melanoma cells. There were indications that the tumor had been present for quite some time and had perhaps intruded deep into my skin before regressing. He strongly advised that I immediately seek treatment at a nearby university medical center with a first rate melanoma specialty clinic, and mentioned a clinical trial treatment available at that center. He talked about lymph node tracing and biopsy procedures. In a brief but invaluable phone call, he started me down the treatment path that has me still walking about above ground. I don’t think it’s an overstatement to say that his diagnostic diligence and treatment referrals may have saved my life. It was a bit out of character for me, but a year or so later when the prognosis was rosier I remembered to send him a thank you note.
Googling for prognoses.
This brief phone call, and the bits and pieces of medical data I absorbed from it, led me to barge in to the first of my many mistakes in the journey. I turned that scary evening to medical information on the Internet, in an effort to self-diagnose the possible stage of my cancer. I realize now that this was a truly dumb thing to do, but it was probably inevitable in the Internet age.
There’s a lot of accurate and current cancer information available on completely reliable websites like those of the American Cancer Society and the National Cancer Institute. The lurking land mine for the newly diagnosed patient to blunder upon while surfing the ‘net is this. You don’t have the knowledge and expertise to have much of a clue at this point in time about what’s applicable to you and what’s not. You will run into some truly terrifying mortality statistics, which may or may not have anything to do with your own prognosis. One of my lessons learned is that medical information on the Internet is of great value as supplemental reading to help you better understand what your physician has already told you. But take great care in Googling for information that will form your first impression about your possible medical state; this can be quite damaging to your mental health. By the conclusion of my first melanoma research foray on the ‘net, I was far more worried than I ought to have been based on the known facts. And when matters later turned out to be a whole lot worse than initially indicated by the biopsy reports, the mortality statistics I’d read late into that first night proved to be information I’d have been better off not knowing.
Dialing for Diagnoses.
On the next day, I embarked on a multi-day journey of navigating automated phone systems and playing voice mail tag with licensed health care professionals. You know, doctors, these phone systems are annoying enough when calling the bank or cable company, but they’re particularly so to a distraught patient trying to make an appointment at a cancer treatment center. I can only imagine where this could be heading as system menus become ever more complex. “If your cancer is Stage I, please hang up because your case won’t be all that interesting for us…. If your cancer is Stage IV and you’re running low on pain meds, please enter your 10-digit security code now, if your head is clear enough to remember where you wrote it down….”.
Ultimately I was successful, through a combination of diligence and aggressiveness, in making a first appointment at the university medical center’s melanoma research clinic. Unfortunately, their first available appointment for a new patient was six weeks or so down the road. I’ve often wondered if I could’ve gotten in there sooner if I had already seen a local oncologist who was making a referral. In any event, my family physician told me in no uncertain terms that doing nothing in the interim was a really bad idea. He referred me to a local surgeon for a “wide local excision” at the tumor site and probable lymph node biopsy. I followed up on this referral in blind faith, but am now convinced that this fine surgeon’s compassionate and thorough patient communication, diagnostic diligence, and surgical skills are some of the reasons I’m still walking around. In another out of character move, a year or so later I sent this surgeon a thank you note.
Finding Out I’ll Have An Extended Stay
In early July 2003 I had my first appointment with a local surgeon, who would perform a wide local excision at the tumor site and perhaps a lymph node biopsy. Within a minute or two of our first handshake, I knew I liked and trusted this warm and gracious fellow. In a room that looked more like a small den than an examination room, he pulled a couple of comfortable wing chairs together and invited me to sit down and talk. He acted like examining and talking with me was the most important thing he had to do that afternoon, and that he’d set aside whatever time it took.
Over the next 20 or 30 minutes I learned more about the path ahead, and the various forks in that path, than I’ve learned from any other one physician. Without using excessive amounts of medical jargon and in a manner that recognized I was an intelligent adult, he started out by telling me where he thought I stood based on the pathology reports and some of the basics about the nature and treatment of melanoma. He then laid out what he would do before, during and after surgery, and what the next treatment steps might be depending on whether he found any cancerous lymph nodes. He told me about another patient’s experiences in undergoing biochemotherapy, the clinical trial treatment my family physician had also mentioned. He would make arrangements for me to see a local oncologist a few days after surgery. How I wish all physicians communicated as well as this gentleman.
My surgeon scheduled a couple of preoperative lymph node mapping procedures, called lymphocintigraphy, to first locate and then dye-mark the “sentinel” lymph nodes for purposes of performing a biopsy. Based on the pathology reports, there was reason to suspect that my melanoma tumor had been around long enough to allow the melanoma to spread to my lymphatic system and he wanted to be certain whether that’d happened or not.
It seems that whenever two or more health care professionals get together in the presence of a patient, they exhibit an annoying tendency to talk about the patient like he wasn’t present, living, conscious and sentient. This is always discourteous at best, and at worst it can be extremely disconcerting to the patient. My first brief experience with this phenomenon came during the first lymphocintigraphy procedure.
After waiting around for quite some time for a radiologist to finally show up and do his simple part of the procedure, which was to inject a radioactive tracing substance around the tumor site, we got going. The injections were painful but tolerable. The technician must have seen me wincing a bit, so she asked the radiologist whether the injections were painful. He brusquely suggested that maybe she should ask “him”, i.e. me, about that and opined that they felt much like a series of wasp stings. Signaling my presence, I spoke up and agreed with his assessment.
The Tidy Bowl Man.
In the span of a couple of weeks between the first meeting with my surgeon and a pre-op exam the day before the scheduled surgery, I’d progressed from having no palpable lymph nodes to having a painful golf ball sized lump in my right armpit, where the “sentinel” lymph nodes had been located in the two lympho-whatever procedures. Things were starting to look not good at all. My surgeon was visibly concerned and told me so.
I remember waking up the following afternoon in the loud bedlam of an outpatient post-op recovery “room”, i.e. cubicle, with a surgical drain tube running out of my chest and swathed in bandages. The surgery couldn’t have gone much worse. My surgeon had found a boatload of cancerous lymph nodes, fourteen to be exact, and the initial pathology report indicated those nasty melanoma cells were replicating in a rather aggressive fashion. I think my kind surgeon was nearly as upset as were my wife and me. He suggested that since the wide local excision and lymph node removals had taken a lot longer and been a lot more invasive than anticipated, perhaps I should check into the hospital for the night.
After having spent a couple of hours in outpatient post-op bedlam, I was stubbornly insistent upon getting out of there and going home as planned. Among the negotiated terms and conditions of my release that evening were that I had to walk down the hall to the only available unisex restroom and urinate, twice, all by myself. Determined to complete my tasks, I forced liquids down and, when the call came, stumbled down the hall with my bare rear end peaking out of my hospital gown.
Upon completion of my first round, I gazed downward to admire my work before flushing, and noted the lustrous blue color of my work product. I remember thinking it was strange that a hospital would use Tidy Bowl. I stumbled back down the hall to my cubicle and proudly reported to my nurse that I’d done my work and it was blue. She thought I was being a smart ass, and she was partly right.
By the time I commenced my second journey down the hall, my head was starting to clear from the anesthesia. Upon completion of my second condition of release, I again noted the lustrous blue appearance of my work. Finally, it dawned on me that it wasn’t Tidy Bowl, it was me—passing the blue marker dye that had been injected the previous day to mark those nasty lymph nodes for my surgeon’s guidance. I’d become Tidy Bowl Man.
I was the last outpatient out that night, but I got home.
Meeting my first oncologist.
A few days later, I paid my first visit to the local oncologist to whom I’d been referred by my surgeon. On their best days, oncologists’ waiting rooms aren’t happy places. They’re usually full of very ill people in the middle of radiation and chemotherapy treatments. The music being piped into this particular waiting room didn’t improve the ambience. I’d best describe the format as “funeral home easy listening”. Perhaps something a little more upbeat would be therapeutic.
My wife joined me on this visit. Two sets of ears are better than one, and I’d strongly advise patients not to fly solo on these missions. After a quick introduction and handshake with my new oncologist and before my wife could introduce herself or I introduce her, he commented upon how nice it was that my daughter could join me today. He wasn’t joking or being ingratiating. Sure, kick a man when he’s down. She’s only nine months my junior. My wife, naturally, loves to remind me of this incident and recount it to others, and it wasn’t the only time it’s occurred.
Although we didn’t start off on the right foot, this oncologist turned out to be both kind and helpful, although grave in his manner of speaking to us. He proceeded to tell us he’d reviewed the surgical and pathology reports and he didn’t know how to best treat me and needed to consult with a melanoma specialist at the university. Perhaps I was a strong candidate for the biochemotherapy clinical trial that kept coming up in these conversations. He indicated he strongly suspected further metastasis beyond the removed lymph nodes, i.e. Stage IV melanoma, and suggested a PET scan to determine the extent of metastasis. I told him I’d already made an appointment with this specialist the following Monday. He advised me to keep that appointment, and later that day performed the valuable service of making a phone call to the university’s melanoma research clinic to discuss my case with the specialist and forwarding all of my pertinent medical records.
It was beginning to dawn on me that perhaps I was in really big trouble, and I’m not ashamed to say I walked out of there scared witless. My ill advised ‘net reading on the night of receiving my initial diagnosis, particularly about Stage IV survival statistics, was seriously spooking me. So, I headed up to the university clinic in a rather grim frame of mind.
This could be Heaven or this could be Hell
Welcome to the “Name of Rich Oil Guy” Cancer Pavilion.
On August 5, 2003 I kept the appointment I’d made six weeks earlier with the university hospital’s melanoma research clinic. One of my first thoughts upon walking in the door was what were hospital administrators thinking when naming this lovely new building housing an outpatient cancer treatment center a “Cancer Pavilion”? Does one go there to view displays of the disease and shop among available cancer varieties and, after making a selection, enjoy the food court and picnic area and perhaps a musical concert? Or do cancer patients go there to engage in recreational day camp activities? I just don’t get it.
The period between this first clinic visit and starting biochemotherapy treatment on September 15, 2003 is a bit of a blur in my chemically impaired memory. It was chock full of appointments, referrals, more appointments, scans, biopsies and, finally, a treatment decision after the clinic folks had made a fairly sure diagnosis of Stage III, not Stage IV, melanoma. What follows are a few stories about my experiences and impressions during this crazy time.
I believe the medical profession and their patients live in alternate universes in terms of their conceptions and experiences of the passage of time. For a new cancer patient, the diagnostic process can’t ever move too fast; we want answers and we want them today, so let’s get on with it and complete all those scans etc. now. Unfortunately, for most of us it doesn’t work that way. Procedures and tests have to be scheduled in busy medical centers and insurance companies have to be contacted for authorizations. For the medical profession, the elapse of a week or so between major diagnostic events, plus a few more days before the results come in, is but a brief and inconsequential moment in time. To the scared patient (and his family) this is an eternity.
On one occasion during this time of what seemed to me to be glacial diagnostic work, I made the mistake of voicing my feelings to the clinic folks. Two rather blunt responses were elicited. One, if I thought I could get things done quicker elsewhere I was welcome to do that. Two, it won’t really matter if a few more diagnostic weeks elapse before starting treatment because it either works or it doesn’t.
I must confess to having said such things to pushy clients in the course of a busy law practice, and I now deeply regret my insensitivity.
Live patient here!
As I’ve previously mentioned, if two or more licensed health care professionals are together in the presence of a patient, they often talk about us like we aren’t there. This is particularly true in a teaching hospital setting, where we patients are a training opportunity and the subject of interesting faculty-student interactions. The upside is that we patients are receiving the best available medical care from a team of faculty physician-specialists and doctors-in-training. The downside is that it can be quite worrisome to the patient and spouse overhearing that teaching conversation.
My first day at the clinic was a baptism-by-fire into this teaching hospital experience. The senior faculty oncologist to whom I was assigned was busy examining a mole on my chest with a lighted magnifier. All of a sudden he popped up and told me not to go anywhere, and excitedly reported that he was going to fetch his resident because he wanted her to see what he’d found. He returned with his resident, she took his place with the magnifier, blond hair tickling my chest, and they proceeded to have a lengthy clinical teaching discussion about the features and appearance of the mole in question. After what seemed like an eternity during which I was growing increasingly concerned while trying not to enjoy the tickling blond hair, I finally heard the diagnostic punch line from my teaching doctor— he told his student “that’s abnormal but it’s not melanoma”. The resident went away with new knowledge and I regained my composure.
A few minutes later, this same doctor was poking and probing around my back. After he’d settled on one particular spot, he once again told me to stay right there while he retrieved the post-residency fellowship doctor who’d already examined me that day. The doctor duo returned and proceeded to take turns probing this spot and discussing what the lump they felt might be. I sensed from the tone of the conversation that the fellowship doc was in a bit of trouble with the boss for not having discovered said lump. Finally, I was brought back into the conversation when the senior physician asked me if I had time today for a needle biopsy. I allowed as how I probably didn’t have anything more important going on that afternoon and could fit it into my schedule
Hi, I'm just a visitor here.
It turned out that the place for a patient to undergo a really prompt needle biopsy at this university hospital was the breast cancer clinic. Upon my arrival, I noted I was the only guy in the waiting room. My spouse and visiting mother from out-of-town were with me that day, and I was hoping to be mistakenly tagged by the other waiting patients as just a sensitive guy there to support one of his female companions. When the nurse called me in, I caught several looks of shocked surprise from the other patients and I had a really stupid urge to announce to the waiting room that I had a manly form of cancer and was just a day-visitor and not a regular clinic patient.
The procedure hurts, and I can’t imagine how much worse it must be for the clinic’s regular patients. The biopsy confirmed the lump was a harmless cyst, and the scanning season began.
If one is good, two may not be better.
I'm a world-class coward when it comes to medical procedures. Among my medical phobias is lying still for 45 minutes or so within the rather close confines of an MRI tube. If you've ever had one, perhaps you can empathize.
So, my first scheduled MRI of my brain was an occasion for me to request some pharmaceutical assistance. My kind and compassionate post-residency fellowship doctor was about to write a prescription for a few 1 mg tablets of Ativan, when my faculty oncologist suggested "give the man some real drugs, he won't stop breathing". So, I scored some 2 mg tablets. This turned out to be a big mistake for which I bear sole responsibility.
I'd never ever before ingested Ativan (the generic name is Lorazepam), which is a potent anti-anxiety medication that is also prescribed for chemotherapy nausea. My instructions were to take one tablet about thirty minutes before the scan. Well, the schedule in radiology was running a little late that morning, plus I was a bit freaked out about the whole cancer thing at that point, having been told by several doctors that finding metastasis in these scans was a likelihood. So, I snuck away from my wife and took a second 2 mg tablet, bringing my total dosage to 4 mg in less than an hour. I later learned from a physician acquaintance that 4 mg would be an appropriate dose for an emergency room physician to give a homeless alcoholic with delirium tremens whom had been brought in off the street by the cops.
In any event, I actually enjoyed the MRI and kind of grooved to the banging sound of those magnets before almost falling asleep during the scan. My wife and I went out to breakfast after the MRI to kill some time before a CT scan, and I nearly did a header into my plate despite downing several cups of coffee. She then drove me to a nearby park, where I slept it off in the car. After a long nap, I was still a bit staggered and dazed when returning to the hospital several hours later for the CT scan.
This is just one more thing for which I've had to apologize to my wife repeatedly, but at least she's progressed to laughing about my accidental Ativan overdose.
Unfortunately, the first words we heard about the results of the MRI and CT scans came from a young physician doing a post-residency fellowship at the clinic. He sort of "jumped the gun" and got out ahead of the known facts based on the scans, telling us that a large mass near my cervical spine was almost certainly an untreatable melanoma tumor that was going to kill me in a quite unpleasant manner after further metastasis to my spinal column, brain and lungs. My wife heard three to six months. Ever the optimist, I heard six to twelve, assuming I submitted to some aggressive chemotherapy and radiation treatments to extend my life. He was in no way insensitive or unkind in his words or manner. Quite to the contrary, from the receiving end I'd give this student an "A" for compassion and overall quality of delivery. After he finished, he left to go discuss the scan results with my faculty oncologist, who'd apparently not yet reviewed the pictures, and said they'd come back to talk more about the next steps.
When my faculty oncologist came in to see us some time later, the fellowship doc had tagged along and stood silently in the corner looking like he'd just taken a severe verbal beating. The faculty physician proceeded to do the best he could to undo the damage wrought by his young charge, saying that they couldn't be sure what this tumor was and that he was a little skeptical it was a melanoma tumor based on its appearance and the length of time I'd reported having symptoms consistent with a bad cervical disc. I have no idea whether he really believed this might not be a melanoma tumor, but I don't care. I can't speak for my spouse, but his reassuring words gave me a glimmer of optimism to hold onto in the coming days. So, he sent me off to a surgical oncologist to discuss a biopsy.
I never, ever saw that fellowship doc again, even in the clinic halls during my many visits in the subsequent months. I wonder whether he was gunned-down by another patient following a similar incident. I know that for several weeks following this experience I would've liked to take a shot at him, which is just another reason I'll never have a concealed carry permit for a handgun. I expect it was just a rookie mistake and no longer hold a grudge.
Would you acquit the shooter?
I thought that was the name of a small town in Oklahoma.
Dancing the referral shuffle, I saw a surgical oncologist, who sent me to a neurosurgeon, who sent me to a neuroradiologist to perform an ultrasound needle biopsy on the suspicious mass near my spine. This procedure turned out to be excruciatingly painful, but that was a very, very good thing. After three unsuccessful attempts at extracting a bit of the tumor, the neuroradiologist called a halt to the procedure and was visibly pleased and excited to tell me that he believed he was inserting the biopsy needle into a schwannoma, a tumor that forms on the protective tissue surrounding a nerve or bundle of nerves, rather than being a melanoma tumor as he and the other doctors had apparently strongly suspected.
I was a little too dazed from the experience to fully understand how good this news was, and it didn’t completely sink in until I met with the neurosurgeon a few days later. This kind gentleman, who I was later to see a whole lot more of, confirmed their conclusion that this mass was almost certainly not a melanoma tumor and instead a schwannoma, which are usually benign and slow-growing. It was something we could deal with surgically, after licking the melanoma problem. Looking back, I think this was the first day since the melanoma tumor surgery on which I started to think and act like a survivor. A short time later, I renewed my ski pass for the upcoming season and vowed to use it.
My Whole World Lies Waiting Behind Door No. 3.
The diagnostic dust had settled on Stage III melanoma, with a bonus tumor believed to be a likely-to-be-benign schwannoma that we'd worry about later, so it was finally time to make a treatment decision. The clinic folks presented me with three options. One was to do nothing and take my chances, which weren't all that good. The second was to take the standard treatment of high-dosage Interferon-alpha injections, and that didn't sound like it much improved my odds. The third was their biochemotherapy clinical trial treatment, which they said they believed was showing significantly better results, although they couldn't give me any hard numbers because they hadn't been administering and studying the treatment long enough to compile reliable statistics. I quickly chose Door No. 3. Might be better was way good enough for me at that point.
As you might expect, there's quite a lot of paperwork and disclosure involved in electing to undergo a clinical trial treatment. In the midst of a disclosure session, which was sort of a tag team affair on the part of my clinic doctor and his care coordinator nurse, my wife decided she'd heard more than enough for a while and went outside to catch some sun and air. The nurse took this opportunity of having me alone to tell me in a hushed and concerned tone that I needed to know that my wife and I shouldn't plan on starting a family after this treatment. I thanked her for letting me know this, but reminded her I was fifty years old and starting a family at this stage of life wasn't really a big issue. Her response was, but oh my doctor and his wife were expecting a baby and I really needed to tell my wife about this effect of treatment. Well, my doctor has to be at least ten years my elder and apparently he's married to a much younger woman. So it finally dawned on me that this nice nurse thought my wife was much younger than me and still of childbearing age. At least I'd progressed from having my daughter with me today to having a much younger wife along. Perhaps wife number 2 or 3 since, after all, I was known to be a practicing attorney. I never should've related this story to my wife.
The day ended with my jovial oncologist/expecting father telling me he promised not to use the word "experimental" in talking with my insurance company. Whatever he said, it worked and they paid. Thank you.
I’ve Most Definitely Checked Into Hell
The importance of showing up
On the way-too-early morning of September 15, 2003, I checked into the university hospital’s critical care oncology unit to begin my first of four rounds of biochemotherapy. After nearly three months of diagnostic work and surgery, I was ready to finally do something, perhaps anything, to start putting up a fight. Put me in coach, I’m ready to play, today.
I really didn’t have a clue what was in store for me over the course of the next five in-patient days. That’s not because the nice folks at the clinic didn’t tell me all about it, because they most certainly did. Call it a healthy state of denial born from desperation. I was so scared of the alternative, i.e. likely and imminent death, that I’d probably have swallowed plutonium if that’d been the recommended treatment regimen.
A couple of hours or so into the initial blast infusion, the sense of bravado was way gone. Had I been physically capable of doing so, I probably would’ve hightailed it out of there never to return. I’ll spare you the details of the brutally toxic side effects of this treatment. Suffice it to say there’s a good reason they only do this on an inpatient basis, which allows constant monitoring and treatment of side effects; otherwise you’d probably die. A fine nurse named Johanna eventually knocked me out with a nice dose of Demerol into the infusion line. Thank you and goodbye. Unfortunately, my wife was still wide-awake and had to watch what has happening; I think the rest of the week was harder on her than me.
The week ended with nurse Johanna deciding I needed to take a walkabout around the unit, to help bring my blood pressure and blood oxygen levels up to a safe enough level for discharge. I recall slowly shuffling down the hall, propped up on either side by my wife and Johanna—both are short and of convenient crutch height—with somebody dragging the IV pump tree stand along. The walkabout worked, and I thank her for that.
I think the hardest thing about chemotherapy is going back for more. I’m still not sure how I talked myself into returning for rounds two, three and four. My best guess is it was some combination of desperation, determination, and the sense I’d be letting everybody down, including myself, if I’d failed to show up.
Passive restraint and threats of the real thing.
In the days after my wife brought me home from the chemo condo after a 5-6 day round of treatment, she employed an ingenious and compassionate form of passive restraint of her patient. Extremely weak from treatment and with a brain addled by side effects medications, I was likely to get into trouble wandering around the house. I'd find myself in a room with no idea why I was there. More than once, I tumbled down stairs. So, when my wife needed to keep me restrained for a while, to take a shower or walk the dog or just take a break, she placed me in my favorite recliner in our TV den. The recliner was conveniently wedged between a wall and an oak file cabinet that doubled as an end table. Snug and warm under a comforter and armed with my remote, I was a safe and happy captive. I was too weak to raise the recliner from its fully reclined position, and couldn't roll out either side. She claims that when she'd check on her patient, she'd often find me watching local city council and planning commission meetings on the city's cable channel. I don't doubt this.
I also exhibited a tendency to wander around my little hospital room unattended, particularly in the early morning hours at the tail end of a day's round of infusion. The nurses should never, ever have told me there were long power cords and battery backups on those IV pumps on the tree stand. My wife claims that I was once apprehended in the shower still clad in my hospital gown and boxers. Fortunately, the infusion line was long enough that I didn't drag the IV pumps in with me. I have no memory of this.
Eventually, this wanderlust got me into big trouble and bought me an extra day at the chemo condo. On what was supposed to be my last day in the hospital during my fourth and final round of treatment, my penchant for doing a walkabout resulted in not just one, but two, Code Blue events after I passed out and fell down. Reportedly, I took out a small student nurse on one occasion and I hope this didn’t cause her to bail out of her training. When a patient goes down in the hospital and his nurse can't detect respiration or a pulse, all hell breaks loose and a resuscitation team descends upon the patient with extreme rapidity and efficiency.
From my perspective, all of this was completely non-dramatic. I didn't "see the light", nor did I float around watching the team resuscitate me. About all I vaguely recall is blacking out, smacking my head on something, and waking up on a cold linoleum floor surrounded by an audience of concerned-looking people clad in hospital scrubs and white coats. From my wife's and attending nurse's perspectives, it was a really bad day. After the second of these events and when I was back in bed and stable, my very kind nurse-- who'd by then seen way too much of me that fall-- gave me the sternest lecture I hope to ever receive from a health care professional. The gist of it was that if I didn't swear I'd never do another unauthorized walkabout, she'd seek a restraint order from my attending physician and she was quite certain he'd back her up. I'd managed that day to scare the living daylights out of my wife and nurse, and for that I will always be sorry.
There is a moral to this story. On this and a couple of other less serious occasions, I caused a lot of trouble by being a stubborn lunkhead and disobedient patient. I hope I've learned that if a nurse tells you to do or not do something, there's probably a very good reason for those orders that has to do with your welfare and not the nurse's convenience. You ought to do as you're told.
Is this treatment really legal?
Some kind of funny things happened during the course of biochemotherapy treatments, especially the first round, that made me, and my supportive spouse, wonder what we'd gotten ourselves into.
On one hospital morning, my faculty oncologist came in to see me, doing "teaching rounds" with a gaggle of med students. I was only semi-conscious and sentient, but my wife was wide-awake camped in her bedside chair. After giving me a once over, my oncologist launched into his presentation to his students about my medical history and the course of treatment. In the midst of his discussion of the various treatment drugs and dosages (biochemo is a high-dosage combination of drugs to stimulate the patient's immune system and drugs that are direct cancer cell killers), one of the students blurted out a question-- 'but doctor, wouldn't this kill the patient?' My doctor, who has a good and warm sense of humor, God bless him, responded with a hearty laugh and “well, we certainly hope not”. At this point, I was roused into a higher state of consciousness and my wife nearly fell out of her chair. Fortunately, he proceeded to explain to his flock how the potentially fatal side effects of treatment (dangerously low blood pressure due to vascular leakage) were being counterattacked, so we calmed down a bit. I vaguely recalled having heard this during the pre-treatment disclosure sessions, when they told me they'd never lost a patient during treatment but not to freak out if I woke up in ICU, which might well happen if my blood pressure got too dicey and they moved me to ICU to enable closer monitoring and a higher dosage of medication to stabilize my blood pressure. Luckily, it never did.
Early on in this same round, a student hospital chaplain paid us a courtesy call to ask if there was anything the chaplain staff could do to assist. I was completely out of it during her visit, probably floating in Demerol heaven, so my reporting of this event is based entirely on what my wife later recounted. Apparently, I looked quite ill because the student chaplain took a look at me and proceeded to tell my wife that they needed to get a priest in there immediately to administer last rites, and she offered to make the necessary arrangements. I guess quite a discussion ensued, with my wife insisting (quite accurately) that while I might look awful I was actually doing fine and was in stable condition and the student chaplain insisting that I was clearly dying. At some point during the middle of this debate, my nurse came in and took my wife's side of the discussion and suggested the student chaplain back off. The irony in this is that the Church's Sacrament of Healing is not only for folks on their deathbed and its administration would've been entirely appropriate under the circumstances (if I hadn't procrastinated for years and not yet actually joined the Church), and neither my cradle Catholic wife nor the student chaplain knew their debate was irrelevant.
The last thing happened midway during treatments, when my faculty oncologist became concerned about the fact the left side of my face was drooping. This was news to me because I'd been making a concerted effort not to see myself in the mirror, having previously scared the daylights out of myself in catching a good look in the mirror above my hospital sink during an unauthorized walkabout. He wanted to do an MRI of my brain, to make sure this droop was just an effect of the treatments rather than a symptom of a brain tumor or stroke. Just?
Yikes. My wife still insists she'd never submit to biochemotherapy or anything like it. I think that's just because she doesn't realize the whole thing was harder on her as a loving witness and caretaker than it was on me as the patient who was always heavily sedated and often completely oblivious during the worst of the process.
They prescribe Thorazine for hiccups?
Which brings up the matter of side effects medications. My doctors and nurses, along with the hospital pharmacy staff, did their absolute best to make me as comfortable as possible, both during and in the week or ten days following each treatment round. The downside was that for several months during and after completion of treatment, I felt like my brain had been stolen. The combined effect of one of the treatment drugs, which is neurotoxic, and the cocktail of medications given to dampen the nausea and high fever shakes, plus Thorazine to deal with violent hiccups that just wouldn't stop, was to severely impair my short term memory, reasoning ability and concentration level. The doctors call this "chemo brain" and it's one of the ugly little secrets about strong chemotherapy. For a while, I couldn't read and understand anything more complicated than a short USA Today level of news article. A novel was totally out of the question. The upside was that all of this sure beat the alternative, and sharing the intellectual life and "no worries" mental outlook of my golden retriever wasn't all that bad. For both of us, about every day and every thing was a new discovery and we took great pleasure in a nice walk and a good meal, followed by a nap.
Early on, I resisted taking the prescribed medications and paid the price for my stubbornness. One of my lessons learned is to take your medications and just roll with their effects. The brain fog eventually clears, and meanwhile you'll forget a lot of things you probably don't want to remember.
Oncology humor and oncologists as cheerleaders.
I really do appreciate a sense of humor in my physicians, especially oncologists. On one particular occasion, however, oncologist humor misfired on me, but this in itself is funny in a black comedy sort of way.
Ten days or so after completing the fourth round of biochemotherapy, I went to the clinic for a checkup. A young oncologist doing his post-residency fellowship was the first doctor to see me that day, and we'd seen a lot of one another since my first visit to the clinic. He charged into the examination room with a grin and announced that I was their thousandth patient to complete biochemotherapy and, consequently, was the lucky winner of a fifth round. Unfortunately, as a result of treatments and side effects medications my brain was working on a ten-second or so delay and I didn't get the joke. I thought he was delivering bad news in a light-hearted manner, which would've been entirely appropriate in our doctor-patient relationship that had involved some black humor bantering during the preceding months. I'd forgotten that they'd told me the treatment involved four and never more rounds. My wife says I slumped in my chair and had a completely horrified look on my face. The doctor immediately realized I didn't get the joke, and proceeded to apologize profusely.
This fine young physician, who is now a member of the med school faculty, had been especially encouraging when he saw me between rounds of treatment, always telling me I looked pretty good for a 50-year-old guy in the middle of a harsh set of treatments. My attending faculty oncologist had told me several times during this period that I was probably still in better shape than most of his residents. These may have been bald-faced lies, but they were therapeutic and kind words the patient needed to hear. Thank you.
But I've also had the opposite experience. At the tail end of this particular checkup, the head of the clinic came in for a drive-by examination, I think only because the rules required that a patient couldn't be seen only by a fellowship doctor and my regular faculty doctor wasn't there that day. The big dog doc gave me a quick once-over and then asked how I was feeling. I reported feeling pretty well and that was the truth. I was ecstatic to be finished with chemotherapy and to be feeling better day-by-day, knowing I wouldn't be checking back into the chemo condo in a few days. His response was that I certainly didn't look as good as I said I felt. Maybe it was an unsuccessful attempt at dry humor, and his statement was undoubtedly true, but why on earth would he say something like that to a patient?
The survivorship era begins; is it a good thing if your brain scan is negative?
December 2003 marked the beginning of my recovery and rehabilitation from treatments. It was also the beginning of my time of blessed “remission”, i.e. your oncologist can’t detect any evidence of cancer cells but can’t guarantee they aren’t there and won’t aggressively manifest themselves one of these days. After the surgery and treatments are all done, one enters the “wait and see” time of frequent checkups and it can be a little scary when your oncologist acts mildly, albeit pleasantly, surprised when you show up healthy.
It was also the time of my first experience with what I’ve come to call survivorship fire drills. I think most every survivor experiences these drills. You think you are perfectly fine and healthy, then you go see your oncologist for a checkup and before you know it you’re lying in some sort of scanning device to check out something of concern. One can’t help but be a paranoid hypochondriac after talking with your oncologist about the risks of recurrence, which are generally quite high for at least a couple of years after completing chemotherapy. Consequently, these drills can be a bit unnerving. They certainly have been for me, because I’ve heard once or twice too often that I’m at very high risk of metastasis, although less so today. Maybe I’m just a wimp.
So, it was finally time for that MRI of my brain, to determine whether that facial droop was “just” caused by treatment, rather than a brain tumor or mild stroke. I have no idea what my oncologist really suspected, but he did a great job of making me believe I shouldn’t be too concerned about the MRI results. Thank you, I needed that. Several days after the procedure, under a safer 1mg dose of Ativan this time, the report came back that the MRI was “negative”. I chose to understand this conclusion as meaning the MRI showed no abnormalities, not that it meant I didn’t have a brain. My wife still argues the latter conclusion, basing her case on the fact that no doc bothered to order up another brain scan until nearly four years later and alleging that that one was merely an exercise in practicing defensive medicine. In the days to follow, there were times I thought she was right.
Will I Ever Get to Leave?
Practicing law with “chemo brain”.
I returned to my law practice, at least what was left of it after a six-month medical leave, in mid-January 2004. I quickly discovered that a challenging law practice and chemo brain were not a compatible mix. So I bailed out before committing egregious malpractice, intending to focus on getting well and worrying about my work life later, and I can’t say that at the time I was all that optimistic about there being a “later”.
When I told my oncologist at a checkup a month or so later that I’d quit lawyering for the time being, his wisecrack was that there was nothing like a little melanoma to cause a fellow to get his life in order. And so it goes with the strained relationship between the medical and legal professions.
Right or wrong, my decision led to my having a wonderful spring, summer and early fall of trying to get back in shape in the great outdoors of the Rockies.
Before I begin to rant, let me first say that I believe my oncologists at the university clinic are “as good as it gets” in their specialty, and they’re also genuinely nice people who work very hard and care a lot about their patients. But talking with you gentlemen is too often quite uninformative. Most of the time, you say absolutely nothing or as little as possible with carefully chosen words. Talking to you is like deposing a well-coached witness, who volunteers no information and carefully answers questions from the lawyer on the other side of the case with the briefest and narrowest answers possible without committing perjury. If I don’t keep poking away and asking the right questions I’m probably not going to find out much, even good and optimistic news. The occasional exception to your reticence occurs only when you have something to tell me that’s not good news, and in that case I’ve sometimes heard more than I think I needed to hear to make the decision only I could make. I’ve often wondered whether this all stems from the fact you know I’m a recovering attorney and you’re afraid I’ll sue you if you say something optimistic that could be misconstrued as a warranty or fail to say something bad that I’d twist into a ‘lack of informed consent’ case. Maybe you’re just too busy, scrambling to keep up on a tightly scheduled clinic day chock full of patients. Gentlemen, unless that biochemotherapy cocktail really did include plutonium and it was a reckless mistake for which you are personally responsible, I can’t imagine ever, ever getting litigious with you. So please lighten up and talk to me, at least to the extent your busy schedule allows.
In July of 2004 I developed a nasty and painful red welt in my rib cage area. I was clueless about what it might be, but having been strongly encouraged by the clinic oncologists to listen to my inner paranoid hypochondriac self and report absolutely everything to them, I dutifully went in to the clinic between scheduled 90-day checkups. This was the first time I heard my young post-fellowship oncologist use what has become one of his favorite lead-in lines, “I don’t want to freak you out, but………”. He told me the welt was “shingles” --a flare up of the chicken pox virus, herpes simplex-- and went on to explain, since I’d probably read it on the Internet anyway and he’d prefer that I heard it from him, that something was messing with and suppressing my immune system. That something could be immune system suppressing chemicals secreted by cancer cells, although it’d be quite rare for melanoma cells to do that. So, let’s do a CT scan of nearly everything. My steel-trap legal mind immediately deduced that a CT scan is not the standard medical response to a minor outbreak of shingles.
I think this was the first time I understood that high-risk cancer survivors are sort of “special” in terms of how doctors respond to otherwise routine medical problems and symptoms. In any event, the CT scan showed nothing amiss and my second survivorship fire drill turned out to be another false alarm.
October 2004-May 2005
This is Hell Once Again
Pros and cons of the morphine pump.
In October, it was time for some neurosurgery to remove the schwannoma, which the surgeon had been monitoring for over a year now with periodic MRI scans. This was my first life experience with some truly agonizing and lingering pain, and I don’t know how folks with chronic severe pain endure.
The first thing I remember after rousing in post-op recovery was an anesthesiology resident and post-op nurse telling me that button in my hand was a trigger for a morphine pump, and I’d be needing it. They weren’t lying. The second thing I remember is the smiling face of my kind neurosurgeon, who has the twinkle in his eye of a Leprechaun, and hearing the welcome news that the tumor was a benign schwannoma, with no signs of melanoma. He then started sticking a pin in my left arm and hand, and checking range of motion, and everything was still working. The only slightly bad news was that after six hours or so of surgery, he’d decided I’d had enough for the day and he wasn’t able to remove the entire tumor. I still retain a piece of it, and we recently had another whack at it with radiation treatments.
In the day or so after surgery, I became a fervent timekeeper who fired that morphine pump as frequently as allowed by its timing device. These things work quite well, but there’s a downside to a self-operated pain control device. About the time the pain is dampened to a tolerable level, the walls start moving and the patient falls asleep for a while, only to wake up in intolerable pain and repeat the cycle.
I’m embarrassed to admit that I was a miserable and grumpy hospital patient in the days following surgery. If the neurosurgery unit nurses weren’t all candidates for sainthood, one of them might have put me out of their misery by administering a little too much pain medication. I apologize.
As a result of biochemotherapy effects, I healed very slowly but luckily avoided becoming addicted to any of the boatload of pain and anti-seizure medications I ingested over the next several months. I guess I discovered that living in a narcotic haze wasn’t my idea of a good time. It wasn’t until May of 2005 that I turned the corner and felt better than I had before the surgery. When the worst of it was over, I told my neurosurgeon that I preferred his work to that of my oncologists, but only because it was merely a one-time beating rather than a serial one. Fortunately, he has a good sense of humor and I’m still his grateful patient.
June 2005-October 2006
Maybe There’s an Exit Door in This Hotel
Time off for good behavior
A quiet time began, with only a “no worries” CT scan thrown in just for safety’s sake. Hiking and volunteer tree hugging became high priorities. It was a dog’s life, for both the golden retriever and me. Good work, if you can get it.
In the late summer and early fall of 2005, both the neurosurgeon and oncologist sent me out on parole. The schwannoma was stable and the surgeon advised leaving it alone for the time being. The oncologist declared that I’d reached the milestone of two years in remission, and let me graduate to six-month checkups.
What ever would I do with myself during a hospital-free fall?
Working my way down the checklist
I decided that the time for further procrastination was way past, and began confirmation classes to join the Church; I even completed them. My wife and I finally made our first trips to Europe. I worked hard to become a better skier and golfer, albeit with mediocre results. (The schwannoma surgery improved my golf swing by discouraging my predilection to over swing; it hurts to take the club too far back!) I dug into volunteer work for a land trust. As time passed, returning to law practice seemed less and less like a priority in life. I made it back to the old hometown more often to visit family. My brother and I took our mother to D.C. to celebrate her 80th birthday. I read more and became a better cook. These things, and others, were of the sort that I’d always targeted for some indeterminate time “later”, like an active early retirement life beginning in my early 60’s. But I’d finally realized that time is, and always was, of the essence.
Winning the lottery
It was during this quiet time when I came to understand that I have been one of the lucky winners of this country’s health care lottery. What might have happened to me, and to my spouse’s prospects for a secure retirement, if I hadn’t been covered under a high-quality health insurance policy at the time of my initial diagnosis? Would I have even been seeing a family practice doctor for regular checkups, which led to a diagnosis before the disease had metastasized into any major organs? What if I hadn’t been blessed with the education that enabled me to seek out and make good decisions about obtaining the best available treatment? What if I didn’t have the financial resources to cover the costs of deductibles and co-pays, which are collectively quite substantial even under the best health insurance coverage? And, oh by the way, we were also lucky enough to be able to absorb the travel costs of my treatment and hospitalization in a city we don’t live in, since the treatment I needed wasn’t available in our hometown. But for all of these advantages, would I have received a hugely expensive state-of-the-art clinical trial treatment that has whacked the disease into remission?
It’s entirely possible, and perhaps likely, that a 50-year old uninsured blue-collar guy diagnosed with Stage III melanoma wouldn’t still be above ground four years later. I can’t conceive of any justification for a health care system that gives me better prospects for long-term survival than those among us who are less fortunate. This rich country can and should do better. I may even vote for a Democrat in the next presidential election.
Catching up on my medical journal reading
Beginning in the spring of 2006, my clinic oncologist started teasing me with strong hints of favorable clinical trial statistics being compiled and a journal article in progress. My subscription to the Journal of The American Society of Clinical Oncology had expired, so I was relying on the clinic folks to tell me the full story when it was written.
During my October regular checkup, my doctor gave me a copy of their published biochemotherapy study article and briefed me on the study results. He was pleased to show me that I was living on a very favorable point on the relapse-free survival curve and had survived beyond the highest-risk period, and was nearing the point after which they’d seen no recurrences.
After I got back home, I read and reread through the entire article. There was some alarming stuff in there regarding the toxicity of the treatment and the significant number of patients who’d bailed out of treatment because they had to or they chose to. I’d experienced, to one degree or another and sometimes severely, all of the side effects listed in one of the tables. I’m thankful the paper was not available for my pre-treatment reading; there is indeed such a thing as too much information.
The doctor and I also had a good discussion about the long-term effects of treatment. I learned that a mild but lingering case of chemo brain and a bit of peripheral nerve damage were untreatable and probably permanent side effects, but they are nevertheless very good things. These effects are indicators of an effective and durable response to treatment, sort of merit badges of survivorship. I’d never heard that before. So, when I heard the good doctor’s bottom line advice about these issues—suck it up and be glad you’re still walking around—I decided that was blunt but sound counsel I ought to take to heart.
November 2006 to October 2007
Understanding You Can Never Leave and Settling In
One more survivorship fire drill
I only recently came to the realization that, although my prognosis is getting increasingly optimistic, I will probably never be able to leave this Hotel. This past spring, a six-month checkup led to routine chest x-rays, which set off an alarm bell- a questionable opacity in my left lung- and led to a CT scan of my chest. It'd been quite some time since the last fire drill of this sort and I'd started to believe they were past history. It turned out to be a false alarm, with the CT scan showing no abnormalities. Unfortunately, I first learned I was having a CT scan from a cryptic phone message and follow-up phone conversation with a nice nurse who wasn't authorized to tell me why. And so the communication sometimes goes. I expect that these periodic fire drills will be an ongoing and slightly maddening adventure in my new life, and I guess I ought to just be thankful I'm around to hear the alarm bell and that the alarms continue to be false ones.
I did learn something new and interesting during the checkup. Thanks to “overhearing” the clinic’s chief oncologist talk about me with a visiting young doctor, I learned that “the patient” has Irish skin and its blotchy and non-pigmented appearance is the result of successful stimulation of the patient's immune system to attack the melanin cells, both healthy and malignant. Apparently, patients who look like this patient tend to do well and survive. I'd been told my interesting new look was the result of treatment, but I'd never been told it was a very good thing. Maybe it's just one of those things my doctors have only recently learned by observing surviving patients over time. But then again, maybe I just never asked the right question. A relative engaged in family genealogy research talked me into taking a DNA test shortly after this checkup, and my primary reason for agreeing to do so is to provide evidence to this fellow that I’m not Irish.
Celebrity cancer survivors
Celebrity cancer survivors have been much in the news lately. They are not my heroes, and I’m sometimes even slightly annoyed they get so much attention. That's not to say they don't do very good work in charitable fundraising and in starting public conversations about issues important to other survivors and their families.
I greatly admire Lance Armstrong for using his fame to advance the causes of research fundraising and encouraging survivors to live full lives. But he probably never worried much about whether his health insurer would pay for his clinical trial treatments. I know that at least one patient in the research clinic's biochemotherapy study group had to drop out because his insurer wouldn't pay. I wonder whether this patient is still alive. And Armstrong fought his battle with the body of a world-class athlete with some near-superhuman physiological gifts. A lot of ordinary folks face their fight in mid-life or beyond, and have other health issues that affect their treatment and recovery.
Much has been written and spoken about John and Elizabeth Edwards' choice to carry on with the presidential campaign. The important thing to consider is not whether they made the right decision, but rather that they had the luxury of being able to make a choice. Most patients and their spouses have no choice but to soldier on in their working lives as best they can, not only to be able to keep paying the bills but also to maintain critical health care coverage if they're fortunate enough to even have coverage.
Your congressman is happy to have a face-to-face meeting with Sheryl Crow to hear her pitch for increased federal funding for breast cancer treatment research, and I don't blame him. But most of us would be lucky to get two minutes on the phone with our congressman's most-junior staff member.
Tony Snow is a class act and a great example for facing a Stage IV diagnosis with public dignity. But there are thousands of ordinary people walking in his shoes today, and their stories of dignity and grace are never reported.
My guess is that all of these famous folks are genuinely good and humble people who would be the first to acknowledge their many advantages and blessings in staging their fights. That's probably why they do what they do as advocates for other survivors, hoping to use those advantages for the benefit of those less fortunate.
I too have been extremely fortunate to have many blessings and advantages in my corner that too many other survivors don't have-- like easy access to the best in medical care, a health insurer willing to pay for the huge costs of a clinical trial treatment, money for co-pays and deductibles, and a tremendous support group of family and friends (and a golden retriever nurse), just to mention a few. I sometimes wish that I could be a celebrity, instead of just one of the anonymous throng who belong to the cancer club, and could use the power of fame to be an effective advocate for other survivors. My cap goes off, but only in the shade mind you, to the ordinary heroes of the cancer wars who are enduring their scrap with the beast and haven't been as lucky or advantaged as me, and who live worlds apart from these celebrity survivors.
Dialing for dollars: is it medically possible to convert to a more popular type of cancer?
Now that I've been feeling so well, I've been eager to attend a few fundraising events to support research on advanced melanoma treatment. The problem is I can't seem to find any, at least not within driving distance of my domicile after bumbling through my round of golf and downing several expensive 19th-hole beers. Being a proactive sort of guy, I've sketched out a concept plan for the "Metastatic Melanoma Memorial 9-Hole Night Golf Tournament and Fun Run". It'll feature glow-in-the-dark golf balls, tees and flags, plus headlamps on our golf caps, and we'll all jog in reflective running shoes between shots. The winning score will be based on a combination of the fewest strokes, fastest round, and fewest injuries from colliding with trees while looking for balls hit into the rough. Unfortunately, my preliminary market research indicates there aren't enough potential participants in the state to stage a successful event.
So, I've been wondering whether it's possible to convert to a more popular form of cancer, like lung, colon or prostate cancer. I'd even consider breast cancer and wearing pink. My charity event calendar is looking pretty empty and I'd like to be able to fill it up and also stock up on cool ball caps and t-shirts, plus get a nice hand when I stumble over the finish line as one of the celebrated survivors.
Please forgive my warped sense of humor, which has probably just blown over the line of good taste. All I mean to say is this. As best I can assess it, the game of cancer fundraising and allocation of public and private research money is all about patient numbers. The playing field is extremely uneven in terms of research dollars-per-patient death spent on various forms of cancer, and the money follows cancer types with large numbers of sufferers. That's no surprise in a for-profit health care system in which pharmaceutical researchers quite rationally chase treatment drugs with potentially large patient markets and the resulting big profits. I know a brave lady who is one of a handful of known survivors (I believe the number to be four) of an extremely rare form of cancer and you can bet her small band of brothers and sisters hasn't been the beneficiary of a targeted fundraising event or research grant. My point is most certainly not that we should give or spend less for chasing cures for the most common forms of cancer and for finding preventive and screening measures for them. Rather, we should be giving and spending a whole lot more for the benefit of every patient and survivor and every type of cancer, while also making the game of allocation of research funds a bit less market-driven. I can't think of any justification for a charitable fundraising system and research funds allocation system that place different values on patients' lives depending on the commonality, or popularity if you will, of their strain of the disease.
Going ‘nucular’, etc.
I recently underwent a series of radiation treatments, called stereotactic radiotherapy, to take another whack at the schwannoma. After some discussion among the radiation oncology folks about whether they’d go for 25 smaller-dose treatments or 5 large-dose treatments, they decided I was still young and healthy enough to safely withstand 5 Grande shots. I felt a warped sense of manly pride about this. The radiation docs did a fine job of “lowering my expectations” for the results, telling me that success would be defined as stopping further tumor growth and not to expect tumor shrinkage. So we’ll wait and see, and check it out in a couple of months through another MRI. I’m not particularly discouraged or surprised by this treatment prognosis.
Part of the treatment preparation involved fitting a frame and mask, with the help of a CT scan, that would serve the dual purpose of immobilizing me during treatment and mark the targeting points for firing focused radiation beams at the tumor. It turned out that I had to do this twice because in the first fitting the radiation oncology doc mixed me up with another patient and told the technician to fit me with the wrong sort of frame. But he had the good manners to call me up in person to tell me what’d happened, and apologized profusely for my inconvenience in having to return to the hospital for a second try. Interestingly enough, I found the whole thing sort of comical and wasn’t that annoyed by having to repeat an unpleasant procedure. A few years ago, such a thing would have seriously pissed me off.
Through a combination of luck and being an aggressive patient, I managed to schedule all of the radiation treatments, a checkup with the melanoma specialist, and an MRI scan of my brain all in the same week. It’s sort of a cancer survivor trifecta. To cap off the treatments, I took my mask home as a souvenir after posing for a commemorative photo wearing the mask while bolted to the treatment table. The checkup showed no signs of a melanoma recurrence. But it ended with the usual caveat from my oncologist that while he was cautiously optimistic about my prognosis, given the length of time I’ve remained “cancer-free” after completing treatment, he’d never stop being concerned, which is why he’d ordered the CT scan six months previously. So, I needed to promptly get my tail in to see him if I felt anything amiss. The MRI showed no evidence of a brain tumor, but did show some indications of possible scattered damage due to loss of blood flow and oxygen to my brain. This perhaps is a result of biochemo complications, but who knows. Call them hail dents from a storm that has passed. At least I now have documented proof I do have a brain. It was a slightly unnerving and hectic week, but at the same time it seemed strangely routine.
My primary care doctor recently insisted that I undergo a screening colonoscopy, telling me that for someone with my medical history it was an absolute necessity. So I’ve dutifully scheduled the procedure. While I sure can’t say I’m looking forward to it, I’m thinking it’s probably going to be just another day at the hospital. Maybe when they’re done they can flop me over and perform a bonus facelift to repair the facial nerve damage.
I think that most every cancer survivor struggles to some degree in reaching a stage of acceptance of the possibility-- and perhaps the likelihood-- that for the rest of your life you will never completely cease to be a periodically poked, prodded, bled, scoped, biopsied, infused, radiated or scanned cancer patient. And perhaps it’ll be all of the above. A young resident doing his oncology fellowship at the melanoma research clinic told me not long after I’d completed biochemo that his reason for entering this specialty was that patients like me are tethered to the clinic for the rest of their lives and he hoped to someday find the cure that would sever that tie. I thank God for physicians like him. But up to that point I think I’d been fooling myself that I’d soon graduate from the clinic, and it was the start of a long struggle to accept that I’ll probably always be one of its patients. But that sure beats the only likely alternative given the current imperfect state of the melanoma treatment art. So I remind myself daily to be thankful to still be around for all of this watchful monitoring and preventive care by highly skilled medical professionals.
All of these recent and upcoming medical events are feeling nearly normal to me- like routine features of my new ordinary life and almost akin to taking my Subaru in for regular maintenance per the manufacturer’s recommended service schedule. I believe I may be settling in at my Hotel. But I don’t think I’ll ever stop hoping I’ll find the door out and am convinced it’d be a terrible mistake if I did.
2008 to Whenever;
The Outlying Years
Singing The Preexisting Condition Blues
In the “gotcha” world of today’s health insurance market, I suspect anyone with a pulse has a “preexisting condition” in the eyes of insurance companies. Cancer survivors most certainly do. And since as long as we have a pulse many of us can’t ever leave our Hotel, this can be a challenge. Have you ever wondered whether, speaking strictly from the standpoint of insurability, surviving cancer was a wise move?
There’s a lovely grand piano in the atrium lobby of the “Name of Rich Oil Guy” Cancer Pavilion. We patients are sometimes treated to free concerts while loitering around waiting for whatever is happening next on our pavilion visits. I can’t play a lick, having bailed out at the earliest possible moment from the childhood piano lessons required by nearly all middle class parents of my boomer generation. Nevertheless, I’ve been working on some new lyrics to The Allman Brothers’ song “Statesboro Blues”, in hopes one of the pavilion players might do a request………….
Wake up patients, keep your claims down low;
Wake up patients, keep your claims down low.
You got no coverage baby, to keep collectors from your door.
I woke up this morning, had them Preexisting Condition Blues,
I woke up this morning, had them Preexisting Condition Blues.
Well, I look at all you patients, and y’all seem to have them too.
Well my employer went and dumped me,
My COBRA died and left me,
I ain't near dead yet baby,
Want some coverage sweet and kind.
I'm goin' to the clinic, claims man will you pay to go?
But if you can't pay it claims man, the billing office said I can’t go no mo’.(and I sure will miss it).
I loved that COBRA, better than any insurance I've ever seen;
Well, I loved that COBRA, better than any insurance I've ever seen.
Well, now, it treated me like a king, yeah, yeah, yeah,
I paid lotsa good money like it a dog gone queen.
Wake up patients, keep your claims down low.
Wake up patients, keep your claims down low.
You got no coverage babe, to keep collectors from your door.
My heartfelt thanks go to the claims department of my post-COBRA insurance carrier for inspiring me to pen these lyrics.
Lessons Learned at The Hotel Melanoma
A cancer diagnosis is an occasion to explore, gain, renew, strengthen, struggle with or completely lose religious faith. And maybe all of that will happen at various times during the course of the journey after diagnosis. There’s just nothing like getting slapped with a clear recognition of the fact of our inevitable mortality, perhaps imminent.
I believe faith is a process of making a choice through the exercise of free will, which is a gift from God. I don’t believe in instant “born-again” conversions, at least that certainly never happened for me. At some point in the journey, I realized that I had made a firm choice; I didn’t wish to live in a world without God and faith and knew there was no way I could walk this path without faith and God’s assistance. I don’t believe I was the beneficiary of one of God’s healing miracles, and can’t imagine why I’d be worthy of receiving God’s grace in this form. I do, nonetheless, firmly believe that I have been the recipient of God’s help, through the care and kindness of family, friends, physicians and nurses, whether they know it or not.
During the recovery process following completion of biochemotherapy, I pondered about the source of all of the kindness and care and morale support that I’d received during the preceding months. What makes your neighbor offer to baby sit your frisky and spoiled dog while you’re in the hospital? What makes a person you think you hardly know, and maybe doesn’t really even like you all that much, pray for your recovery and tell you they are? Why does a very smart and talented young doctor, who could make a boatload of money treating acne patients in Beverly Hills, instead choose to devote his career to melanoma treatment and research in a teaching hospital setting? Why in heaven’s name would a nurse choose to work in a hospital’s critical care oncology unit, caring for extremely ill or dying patients? The simple answer I came to was, ‘it’s God you idiot’, working through people and inspiring them to unselfishly apply their love, talents and caring for the benefit of others. But for the cancer experience, I’m not sure I ever would’ve figured that out. For this reason, I’ve come to see melanoma as a wonderful gift and, regardless of the outcome, am thankful to have received it.
The myth of the courageous cancer survivor
Nice people, whose opinions I highly value, have told me they think I’m tough and courageous. I don’t think so. I feel lucky, not brave. I’ve done what I’ve done for two reasons only, and neither amount to “courage” as defined in my dictionary. One, I was too scared of the alternative to do anything else but undergo and endure some painful surgery and pretty brutal chemotherapy. Two, I felt that if I didn’t show up for this stuff, I’d somehow be letting my family, friends, and medical care team down and be failing to do my job as a patient, and I just couldn’t do that. I feared letting folks down more than I feared treatment. At many times during the journey, I was scared witless and frequently considered running away from further treatment.
My guess is that I’m pretty ordinary among cancer survivors in this regard. I think we all just play the role-- and try to put on our best game face-- of the “brave cancer patient” we’ve seen depicted in the media, solely because we’re too scared not to do what we have to do in undergoing treatment in an effort to survive, and because our loved ones want and expect us to stay in the game as best and as long as we can. I think this is all that passes for “courage” among most cancer survivors; at least that’s true in my case.
I’m a preeminent procrastinator, and always have been. It’s fair to say that I started this bout with, and I’m still working through, a large backlog of unfinished business in both my personal and professional lives. One of the great gifts of being diagnosed with a life-threatening disease is that it creates a greater sense of urgency about tending to things that are important and setting aside things that are not. Some of the stuff you hear, like “live like you were dying” (isn’t that the theme of a cheesy country song?), is a bit over the top, but living with a clear recognition of the fact of your inevitable mortality is not a bad thing for a born procrastinator.
I’m selfish and self-centered by nature, and I struggle on an ongoing basis with those character faults. A cancer diagnosis is a great occasion for being even more self-absorbed than usual. Nevertheless, at some point, and ideally at an early stage in the game, you have to realize you’re not in this fight solely for yourself. Your family and friends have also caught the disease, just in a different way. The treatment decisions you make, and the attitudes and moods you strive to adopt during the fight, have a profound effect upon your family and friends, as well as your professional caregivers. You have to do your best to make things as easy as possible on others, rather than solely focusing on your own needs, preferences and emotions. If my stay at the Hotel is extended by a recurrence and another round of treatments, I hope to do better in this regard. Lord knows, I could and I should.
There were some pretty low and dark times when I thought I’d totally lost my sense of humor. Luckily, it always clawed its way back as my white cell count rose and the Ativan fog cleared or as the pain of surgery moderated. I think it was Sigmund Freud who posited that anger turned inward is depression and anger turned outward is humor. There is some “anger management” involved in being a cancer patient and I think it’s quite natural to at times simply be very pissed off that you’re in this situation. Turning it outside is a whole lot more fun than the alternative, which will also happen at times. It’s at least in part a choice; at least it was for me. Trying to keep a grip on my sense of humor and applying it to my predicament, particularly some of the side effects of biochemotherapy and the side effects of side effect medications, was therapeutic for me and perhaps made things easier on those around me.
Checking out of the Hotel
I really don’t mean to be morbid in using the Hotel Melanoma metaphor. Trust me, dying would not be my preferred means of “checking out”. Rather, my preferred meaning of “checking out” is the idea of seizing those times of normalcy that I think all we survivors experience and enjoying them to the hilt. Even at the worst of times in the summer and fall of 2003, there were still many times of furlough when I lived in a nice moment of ordinary life when I’d forget I have cancer. These moments may not come any time you like, but they do come. We need to search for and embrace those times, holding on as firmly and for as long as we can, precisely because we know that sooner or later something will probably happen that will remind us we can’t leave the Hotel.
Living with the treatment aftermath
Few cancer survivors seem to come out of their cancer treatments unscathed. For most of us, the common combination of major surgery, chemotherapy and radiation result in some lingering and perhaps permanent hangover effects and challenges that affect our daily lives. In my own case, it’s a bit of ‘golden retriever brain’ and peripheral nerve damage from biochemotherapy, and some loss of function in my left arm and hand due to the schwannoma tumor. I’m truly thankful for my blessings of everything I still have that works reasonably well and everything I can still do. And yet I’m also mildly annoyed and frustrated by the daily challenges of living with these effects and stubbornly optimistic they’ll just go away one of these days if I keep working hard enough at beating them. These negative emotions usually lead to feelings of guilt for my seeming ingratitude for survival—and a sense that I should just suck it up and stop whining. I’m convinced, nonetheless, that a bit of annoyance and frustration with the effects of treatment, and a good measure of denial about their permanence, are all for the good for a survivor, as these emotions reflect an enduring fighting spirit that is determined to overcome the disease. Passive acceptance is not the state in which we should ever want to live.
Now there’s a touchy subject. I know-- and I suspect every other denizen of Cancer World knows-- or should I say knew, at least one similarly situated patient who “didn’t make it”. So why have I made it, at least so far, when better folks didn’t?
The answer I received from a very kind person of deep faith is that God apparently has plans for me that involve my survival to date. As a Catholic I’m supposed to believe such things. But to be honest, I’ve always harbored serious doubts as to whether God is a micromanager. Have I instead just been lucky, while God has been busy tending to more important matters?
The God’s Plan Theory brings to mind the old Bill Cosby comedy routine about the Old Testament story of Noah and the Ark—you want me to do what? And Tom Hanks’ dying words to Matt Damon in a final scene from “Saving Private Ryan”: Earn this! In any event, if this theory is correct then why am I completely clueless about the Plan and how I’m supposed to earn this? I’m not expecting to receive any signs or visions that will clarify the matter.
I strongly suspect that the answers to such questions are simply unknowable to us mere mortals. Moreover, I’ve concluded that feeling guilty about a positive outcome over which I’ve had no control is an utterly useless emotion. So I’ll try instead to just be thankful and take my best shot at earning this, and leave it at that.
Talking about cancer
One of the things a cancer survivor needs to get accustomed to is that you’ve had and are still living just about the only major life experience that you aren’t supposed to say much about in polite company, even with close friends and family members unless they’re also staying at your hotel. People will tell you the intimate details of their problems with spouses, work, money and children. But you can’t speak frankly and openly about the cancer experience, even in a positive way or with humor. Don’t even think about mentioning the elephant in the room—the ever-present fearful apprehension that you may not survive this thing and how you’re trying your best to live, and live well, with that elephant. After all, you’ve completed your treatment so you’re “cured” and it’s time to move on and get over it.
It’s not that the people dear to you don’t care, because they do and perhaps more than you know. It’s just a very uncomfortable subject for the obvious reason that it puts them front and center before something most of us spend most of our lives trying to deny— that we’re all going to die of something, someday. Yikes.
I guess my message to friends and family members of cancer survivors is simply this. Cancer is part of your loved one’s life, perhaps at some times an all-consuming part of that life. But my life with cancer--even at the worst of times I’ve written about on these pages--has still and always been a good life worth living as fully as possible for as long as possible. I certainly didn’t want it and can’t say I “like” having it but melanoma has, nevertheless, been a molding and renewing life experience that I’m not certain I would undo even if I could. It’s simply now a part of my life, not all of my life, and I’ve come to accept that it’s probably coming along for the rest of the ride although I’ll still do my best to abandon it along the way. (Perhaps at a Wal-Mart in some uncomely small town.) I think most survivors feel as I do. So lighten up. It’s okay to talk about it, laugh about it, cry about it, or just get angry and defiant about it just like we do about any of the other struggles and challenges in our lives.
Postscript, or not
As I mentioned at the beginning, the more I write the less I like the notion of “finishing” this journal. Instead, I hope this is a place of refuge to which I continue to return whenever I think I have something to say. But just in case I “move on” to other things and the journaling halts, I’ll end with this.
I hope someday to forever leave the Hotel Melanoma with a guaranteed diagnosis of a complete and lasting cure, and a bill paid in full. It’s doubtful that I ever will, but enduring hope serves as the foundation for survivorship. Meanwhile, I’m doing my best to be livin’ it up at my Hotel and I’m quite thankful to be able to enjoy my stay.