Two Weeks of Four Weeks to Live

Two Weeks of Four Weeks to Live

On April 25 of this year, I added a brief comment to the description of my photo-of-the-day entry, “Was rescanned this afternoon. Still cancer-free.”

My particular cancer, Myxoinflammatory Fibroblastic Sarcoma, has a high recurrence rate and spreads quickly, so I will be scanned multiple times a year for the rest of my life. I probably won’t mention clear diagnosis on social media going forward, but it was novel in April to have had my first post-surgery scan. Ideally they will become boring and routine.

That said, late on May 13 I received a call from the cancer centre to let me know that my x-rays were not clean after all. The doctors found a spot in a right-side rib that was concerning and that they couldn’t identify. I was to report to radioactive medicine the following Wednesday for a bone scan. The caller used the phrase “nothing to worry about” at least five times in the brief call. That’s one of those phrases that seems less genuine the more often it is used.

My mind couldn’t help but leap back to my original diagnosis last fall when my lead oncologist told me, probably more casually than he intended, that “If it gets in your chest, you’ll have about four weeks to live.”

I’m obviously not trained in medicine, but my amateur understanding is that my rib is in my chest. And my math skills are still pretty solid.

This news came as my teens were already scattering to their weekend activities and a week of living at their mom’s house. I hadn’t processed enough to try to wrangle them back and give them this nebulous bit of news. With nothing really to do or to report, I didn’t see a reason to lend any weight to their weekend. Though that decision still bothers me a little, so perhaps it was not the right one. I’ll continue to evaluate that.

The net result was an anvil of uncertainty hanging over my weekend and following days. At one time in my life, the test itself might have been a bigger deal. It required reporting to nuclear medicine first thing in the morning to be injected with a radioactive cocktail that would then need three hours to circulate in my blood enough to permeate bone. Then an hour of needing to hold perfectly still (with some straps to “help”) on a bed slab as square-meter camera panels slowly panned all around me. For a severe claustrophobe, it wasn’t quite as bad as an MRI, but as it was an inch from my nose for way too long. I’ll perhaps ask to have some magazine articles taped to it for next time.

I was told to expect a call in 3-5 days with results, good or bad. “We don’t believe that no news is good news,” the nurse told me. I was too out of it to think to ask if those were business days or planetary rotations. (I foolishly didn’t consider the possibility of those biblical “unspecified time period” days.)

I’ve had the opportunity (“pleasure” is the wrong word, perhaps “honor”) recently to speak with individuals who are having their own cancer scares. My advice has been that the not-knowing waiting-to-hear period is actually the worst part of all of it. The part to live through. Once the diagnosis has been made, the body and mind can snap into battle mode and take whatever seeming torture the treatment brings as steps forward. But in the time of waiting, the mind is left to speculate and mine is capable of conjuring unnatural darkness. (Fed all the more by scraps of rational possibility.)

The mind also has amazing abilities to protect us from realities too big to handle. Distractions and responsibilities allowed me to live the remaining days with a sense of a cloud, but mostly unaffected in general tasks. And, frankly, I’ve already made a lot of peace with the reality of the temporary nature of my life. Any of us could be hit by a bus any day… I just might have the fortune / misfortune of seeing mine coming. I don’t fear or lament the end of me, but merely ache for the impact to my children and others left. (My personal mortality issues are quite different, perhaps for another day.)

But nor will my brain leave me in peace, rather the next eight days were punctuated with random assaults. “If I’m not going to be here, why am I paying this cable bill?”, it would question. “You have one month, and this is what you’re doing?” was common, perhaps loudest when mowing my dandelions.

The greatest trigger was anyone asking me to look ahead past the next week. “Do you have plans for the summer?” is well meaning conversation, but I had to bite back hard to not retaliate with a sharp, “I won’t be here.” Kids and life require some forward looking, but I was completely incapable. There was a big black curtain separating the day I was occupying and those purely hypothetical future squares on the calendar. They were days of existing, but not living.

One of those days was my birthday. Years ago, birthdays became crisis and crossroads days for me, not in any way something to be celebrated… more of an anger renewal. My kids and I had the day before my birthday off of school and work for Canada’s Victoria Day, so we hit the zoo, despite the sn0w-like rain, and had a great time together with a special dinner and daughter-crafted cake. That left my mind undistracted on my actual birthday… not a good idea.

I was ready for either news. Either way was welcome.

On Thursday, 13 days after the original call, I finally heard. It was an administrator talking to me and not a doctor, so that automatically meant good news, but also less information. The spot on my rib was “not cancer” and “unconcerning”. What is it? Since I’m stubbornly unwilling to make an appointment with my doctor only for clarification beyond his call instructions, that revelation will have to wait for my next scans in August.

It’s just a few days past the news now, but I’m looking again at the dandelions that have since sprouted. I have an indeterminate time here, is that what I’m doing?

Post-Op — Part Two (A One-Armed Man Did It)

Post-Op — Part Two (A One-Armed Man Did It)

Today marks five weeks since the surgery to remove cancer from my body, and about three weeks since I wrote a blog about it foolishly including “part one” in the title. In the eyes of some, this meant that a part two should follow. My capacity to obligate myself is quite impressive, if I do say so myself. We’re way past life-and-death, medical curiosities and gamma rays now, so feel free to skip this one.

Where were we? Leaving the hospital…

As you may recall, my right arm was thickly bandage-wrapped from fingertip to elbow, with a rigid custom forearm splint bound around the entire apparatus. There was a large spongy pad covering my right thigh, air-sealed to protect the site where skin had been taken to cover the hole in my arm which was made by removing flesh to cover my hand. Last, but not least, there was a two-foot-long tube jabbed into my side below my armpit where my cancerous lymph-nodes had been cut out. Connected to this tube, and safety-pinned to my shirt, was a clear plastic bulbous container that vacuum-sucked a viscous pink fluid from my body cavity 24/7.

Oh, and I had no more cancer. Is that important?

Climbing in to the passenger side of my father’s SUV gave me my first realization of what outside life would be like with only one functional arm. I couldn’t quite contort to cross-body reach the open door with my left hand. Similarly, extending and buckling my seat belt took a long succession of small awkward movements. But we were on our way on the freshly snow-covered streets.

Suffering primarily from debilitating pain and fatigue, finding a way to sleep without hospital-grade medication was a priority. With my body positions limited to standing, sitting and slumping, and the requirement to keep my hand elevated above my heart, my penchant for dozing on the couch served me well. The sleeping and semi-conscious states alternated every few hours regardless of the state of the sun… punctuated by anti-inflammatory drugs and emptying of the crazy drain.

Mom and Dad took great care of me during those first days, ever patient with their delirious, limited-mobility son on forced caffeine withdrawal. Many soups were made, easy-to-reheat foods stocked, pots of decaf brewed and a quest for a one-handed method for opening cans was undertaken. Movies were watched, sports were tolerated, wounds were dressed and redressed, fluids were measured and recorded. I couldn’t bath or shower… that part can’t have been fun.

Someone told me that it takes 24 hours of recovery for every hour being under general anesthetic. That seemed true in my case, because it was six days after my six-hour surgery that I could finally feel my brain forming coherent thoughts. (My apologies to anyone who interacted with me in my fog before that point.)

By day seven, I felt like a dog with one of those huge cones around their head. I was beyond ready to tear off all the dressings, restrictions and tubes… and nearly did at night. I was feeling mentally confidently ready to return to life-as-usual by the weekend. This was shattered by my first confrontation with the reality of my wounds.

My reconstruction surgeon sat close beside me with her laptop open showing me images and data while a resident aggressively cut off my inch-deep fluid-encrusted bandages… some literally sewn to my flesh. She admitted it was a distraction tactic as many of her patients react poorly to the sights of staples being pulled with no more delicacy than a reupholstery project.

First to my eye was the missing chunk of flesh near my elbow joint. The thin layer of leg-skin stapled over it was nearly transparent with the muscle, flesh and veins underneath clearly visible creating a gruesome purple oval window into my body. An unexpected slit from there to the base of my thumb gave a visual trail to follow to my hand. They call it a muffin-top as flesh that was once on my arm (with goosebumps to match) bulged enormously, bursting off my hand and held in place by a hundred near-popping stitches to my remaining red irradiated flesh. No depiction of the Frankenstein monster could look less naturally conceived.

As a small parade of doctors who had been in on the surgery took turns nodding at my limb with pride and approval, I realized that my goal of ditching a splint that day was laughably off the mark. I felt like The Princess Bride‘s paralyzed Wesley being praised by Fezzik for the slight wiggle of a finger when a castle is waiting to be stormed… but with startling deformation as an added bonus.

The next day, I met my physiotherapist for the first time. Fortunately, as I’ll be seeing her more than any other human for a while, she turned out to be quite pleasant with a soothing hum. She laughed at my thought that we might be starting with exercise. Wound care and debridement (scab picking at a professional level) would be all I could handle yet. Putting velcro straps on my splint was the only concession to my sanity.

Later that day, I was attempting to return to work email when my shirt became instantly soaked wet. After a second of panic that somehow I’d lost bladder control on top of everything else, I discovered that the fluids from my torso once content to leave via a tube had now found more direct exits… and so Dad and I returned to the hospital we had just left. In a procedure I feel confident I could have performed myself on a deserted island, my tubes were indelicately yanked out by the hospital’s lead oncologist and patched unceremoniously with a gauze and tape craft project.

The next day would mark the last day my father was with me and the first day my kids would be here. I nervously took my first drive using only one hand, just to make sure I could do it. (Really makes it difficult to text and stay on the road… kidding. Just kidding. Sheesh.) The night included pizza and card games, with my youngest figuring out a rig for me to be able to hold and play the cards. They proved to be great help to me as I asserted normal life — opening jars, flipping inside-out socks, draining pasta, carrying laundry baskets, checking motor oil, shredding cheese and many other things you just don’t think about as a matter of course.

Week by week, the pain has subsided gradually, though I am still on Advil multiple times a day. The leg bandage came off, revealing an unnaturally perfect rectangle of red scabs, like a highly specific third-degree sunburn. I’ve returned to regular work duties, though with the immense frustration of half-speed typing. I can drink caffeine and alcohol again. I’m going to physiotherapy twice a week, where I’ve worked my way up to excruciating finger flexing and wrist twisting. My hair is returning, though ridiculously unevenly. I can shower. I’m allowed and encouraged to walk for exercise, though paranoia about the damage I could do in a fall is high. I was the topic of a medical lecture and the research paper about me is on-going.

The team has been mentally preparing me for at least six months of active work before my fingers are functional again, and probably over a year before my wounds have a near-human appearance. The road ahead is long, but painful and boring. I trust the same will not be said about my life.

Post-Op – Part One

Post-Op – Part One

The day before any travel plays out much the same for me, driven by multi-column lists. Things to buy, things to pack, media to load, devices to charge, email to send and colleagues to prepare for my absence. If it is air travel, there is the added dynamic of an off-typical mandatory wake up time that takes my body into some kind of high-alert mode that prevents anything but the shallowest of sleep.

And so it was on January 5 as I prepared for my 5-7 day trip, a mere 20 minutes away to Foothills Medical Center. I had been told to expect a 7:30 a.m. arrival time, so when the promised confirmation call requested I check in at 5:15 a.m., I couldn’t help but think of many airport-opening flights I’d taken to places I didn’t want to go to do things I didn’t want to do. My impending cancer surgery was on par with a logistics meeting in Michigan.

My parents came to town to assist me through the process. We made great time and found plenty of parking, as one can do at 5 a.m. I felt naked leaving home without keys, wallet, glasses, laptop or phone, but soon enough they had me literally so… swimming in a “gown” that I knew would be tossed aside the second I wasn’t able to object.

The nurse who settled me in expressed her pleasure that some of the 7:30 surgery patients had been called in early so that they could stagger our processing. Um, 7:30? I had been summoned two hours early to accommodate paperwork. Lost sleep so that I might sit in a row of beds and stew for hours about what my body was about to endure. They allowed only one visitor to this point, so my father knowingly distracted my tension with points of interest about the assassination of Abraham Lincoln. I attempted to align this with Lincoln’s role in The Hateful Eight, a historical drama I had seen just a few days prior.

After visits from my oncologist (who marked my cancer-filled hand with a Sharpie), plastic surgeon, reconstruction surgeon, and anesthesiologist, I was walked in to the operating room. It seemed massive to my eyes, maybe 1000 square feet fully adorned in stainless steal. In the center was a metal-slab bed, illuminated with a rock-show of spotlights. If this were a spaceship, it would definitely be the probing room. At least a dozen people were working feverishly, and a few were introduced to me for reasons I couldn’t understand — like having the restaurant patrons chat with their steak-providing cow before dinner in Restaurant at the End of the Universe.

The minutes staring at the sun-like bright light above me (undoubtedly designed to facilitate near-death experiences) seemed endless as I listened to buzz and chatter, a mix of the mundane and medically relevant. But that was a mere instant compared to the eternity the oxygen mask was held forcefully over my face while I was to remain calm. It took everything I had to not wrestle it away and…

I woke. My eyes darted right. My arm was there. My hand was there, though I could not see it through straps and dressing. My mind sent the instruction to strum. 1, 2, 3, 4, 5 fingers… at least phantom ones. Tears of relief. I wanted water.

I woke. “Mr. Ens, can you slide over to that bed?” I saw a bed to the right and understood what was being asked. I attempted to put my weight on my right arm. “He can’t slide over!” another voice scolded. “It’s ok,” I assured the bodiless voices, “I can do this.” I slid over.

I woke. Pain. Holy %#$@ &#@%@ %#@%. What is this pain? “Mr. Ens, we have you on morphine. On a scale of 1 to 10, what number is your pain?” I started to say ten, but then the voice of comedian Brian Regan played in my otherwise empty consciousness. “I had heard that the worst pain a human can endure is getting the femur cracked in half. I don’t know if that’s true, but if it is, they have exclusive rights to ten.” Nine, I corrected. “Then I thought no… childbirth. Can’t compete with that.” Eight, I settled.

I woke. My parents were there. They explained that they had been called half-way through my surgery with the news that they were confident that all of the cancer had been cut out of my armpit site and hand site. Tests were run while I was open to ensure that the outer edges of the removed portions were cancer-free. The tendon to my longest finger had to be removed, but I was fortunate enough to have an extra tendon going to my index finger, so the vestigial one was moved over and stitched in. Plan B had been to transplant an extra from my right leg. (I would notice the next day that they had shaved my leg and marked my foot.) The total surgery time had been longer than expected… six hours.

I was aware that my brain was not formulating coherent thoughts, but I was clear on the time and the morphine schedule. I could get a new bag for my IV every three hours, if I asked for it. Between my noisy roommate (Hank, who I believe may have introduced himself to me earlier) and the staff parade, I had reason to check the time pretty often and morphine math came easily.

At some point that first night, I was alert enough to assess my situation. There was a tube coming out of my side with outgoing fluids. The receiving container was pinned down, limiting my shoulder movement. My right arm was wrapped abundantly from fingertip to elbow and was perched upon a tower of three blue hospital pillows. Any attempt to move that shot a sharp sting of pain to my back, like a whip. My left arm was slightly more free, but there was an IV line taped down to the back of my hand. This was connected with a short hose to my morphine machine. Lifting my head revealed that an oxygen tube was wrapped around my face and anchored in my nostrils. My left leg was wrapped in a tight brace that contracted and released at regular intervals — I would learn that this is to prevent clotting from immobility. Last, but not least, a bit of a hip wiggle was enough to confirm that I had another tube in me to handle outgoing fluids. I did not investigate further.

My reconstruction and plastic surgeon team showed up for rounds at 7 a.m. and I saw a bit of my hand for the first time. They cut a hole in the dressing, and puffing out like a Seinfeldian muffin top was a bit of flesh that I did not know as well as the back of my hand. Each doctor and resident took turns touching the exposed balloon of skin, and each nodded and made approving noises. I couldn’t feel any of it, but they were very pleased with the temperature. I tried touching the area and it felt cold to me. They assured me it was great.

IMG_3665blurThey reviewed what had happened to me for the second half of my surgery. After migrating a tendon and hooking up my finger, they took a hand-size circle of flesh from my forearm — still attached, blood vessels and all — and moved it to cover the area of my hand that had been removed for cancer. A graft of skin from my thigh had been taken to cover my forearm site.

A few hours later, I had my first confinement freak-out. No one was around to see it and I got myself under control without tearing out any tubes, but the checklist of obstacles to freedom became my new mission. Over the course of the morning, I got my fluid collector pinned to me instead of my bed, got the oxygen requirement lifted and convinced a nurse to pull the catheter (easier out than in) with the sworn promise that I would take four walks before day’s end. Just 22 hours after surgery, I was standing on my own, peeing into a screw-on-lid collection vessel. (I’m told this was for measurement purposes, not posterity.)

It was at that time that my nurse freaked-out at the site of the empty venti Starbucks cup sitting beside me. During pre-surgery chemotherapy, my parents brought me Starbucks coffee each morning, and the tradition had continued. My vigilant caregiver was scrambling to notify a doctor. “You can’t do that!” she kept repeating, and finally, “Caffeine restricts the vessels and can cause transplant rejection.” I quietly told her it was decaf. Instantly she went from code-red to all-is-calm and let me be. I never ask for decaf, but I did that morning, hoping to spend as much of the next few days sleeping as possible. Good thing.

The rest of the day passed with visitors and morphine. As much as I wanted to be free of the rolling IV poll, the pain was still too much to leave it yet. But by 3 a.m., I figured out that the cause of the most intense pressure was the swelling in my hand. A call-out to my doctor team got me switched to an anti-inflammatory pain med mix and by morning, I was ready to ditch my IV.

I must have been quite out of it the first day, because several caregivers introduced themselves with, “We met yesterday, but you probably don’t remember.” Each of the four rounds of doctors seemed impressed with my status and started talking about sending me home. Having been warned that I would need to be in the hospital for 3 to 5 days for infection watch, this was an welcome possibility and I pursued it.

The only obstacle was my need for a custom splint that would immobilize my fingers and wrist while avoiding the graft site on my arm. This was early Friday morning and the heavily-booked occupational therapy team that performs this task doesn’t work weekends… it was today or wait until Monday. My team of doctors and nurses were excellent advocates and got the reluctant craftspeople (and their entourage of bulky equipment) squeezed into my tiny room within a few hours, and I gladly sacrificed time with visitors and the emptying of my bladder to get it done.

While my mind was on the complicated logistics and precision sequencing that would be needed to don clothing, my nurses were bombarding my parents and I with instructions on wound care, pain medication, drain management and follow-up bookings with various teams. A stack of papers and bags of home care supplies at the ready, I wove a shirt onto my body with contortions matching a catburgler dodging laser security. Pants were less an intellectual exercise and more one of balance and pain tolerance. And a father willing to do up that final button.

Ready or not, I was in a vehicle headed home.

(Without exception, every doctor, nurse and staff-member at Tom Baker Cancer Center and Foothills Medical were talented, articulate, caring, concerned, helpful and accommodating. I owe them much thanks. As I do to my mom and dad, but more on that next time.)

Knowing the Known Unknowns

Knowing the Known Unknowns

As the distraction of the family-centric Christmas week crashes to an end, I cannot keep my thoughts from straying ahead to the health-defining schedule for my next week.

Since last I wrote about my cancer, I have had a new biopsy, full-body CT scan and MRI scan. I was already on standby for a sooner surgery date, if one became available, based on the prior regrowth observations. It was unclear to me if this last round of tests might actually accelerate procedure timing, or if they were just for accurate diagnosis.

I was told quickly that the biopsy results were “inconclusive”. This was obviously the least-intellectually-satisfying possible answer, so it took others to remind me that inconclusive is medically better than conclusively bad. I accepted this with reluctance.

But weeks went by and I was not contacted with the scan results. I knew key members of my medical team were rotating away on year-end vacation and my calls were uncharacteristically going unanswered. Life and Christmas were marching forward, as they are want to do, so I made plans to take the kids to Saskatoon. I should have learned by now that making alternate plans is the best way to force a medical appointment.

Last Monday, I finally got the call to come in for results and further tests. Delaying my trip, I took the familiar road to the hospital to find a doctor I’ve never met before, reading to me tentatively from pages of notes. I let him mutter about nonsense for a few minutes before I point-blank asked him for the CT results that would tell me if I had only four remaining weeks on Earth. He flipped to the page that described my chest as cancer-free. I would indeed live to see February. “Maybe start with that,” I smiled.

With the news that my CT scan was clear, and that the cancer growth shown on the MRI is within pessimistic expectation, the young MD wanted to start in on a new invasive biopsy to shore-up the previously inconclusive one. My Christmas plans with my children were mere hours away, so I wondered aloud what practical impact such a test would have on my only-days-away surgery. A call to my vacationing lead oncologist confirmed my skepticism about biopsy usefulness, so I left the hospital unpoked and unprodded.

So… next Wednesday, January 6, I will arrive at the hospital before sunrise and be prepped for surgery. The first team will remove the flesh from the top of my right hand from my wrist up to the first knuckles of my fingers. They will cut out all the cancerous cells they find, which may well involve bone shaving, tendon snipping, muscle carving or even digit removal. As a side project, they’ll snip the silently ominous cancerous lymph node in my right armpit.

A second team will then attempt to reconstruct my hand from what is left. If it is determined that scarring will be too severe in the first pass, some repair may have to wait for subsequent surgeries. This might involve transplanting tendons from other parts of my body. Toe-tapping may lose out to 16-hour-a-day typing dexterity.

A third team will do a tissue graft, pulling flesh from my forearm to cover my hand and then harvesting thigh skin to cover my forearm. At least that’s the going-in plan as presented to me. I’ve given verbal permission to the plastic surgeons to make any improvements to any part of me they find time for, but they are mere humans.

I’ll need to remain in the hospital for three-to-five days while they monitor the grafts for infection. Immobile in the hospital will be a special torture. I hope to sample all of the drugs.

I’ve been craving the closure of this surgery for a while now, but as it nears, the thought of waking up to an unknown number of limbs, hands and digits is causing greater anxiety as the days draw near. I have trained myself to describe it unflinchingly when face-to-face with people, but it is an act.

If I’m honest, I’m scared. If I’m honest, I’m angry. But it’s equally honest to say that I’ll be OK.

While there are no guarantees, there is a chance that in a few weeks this could all be over. That’s more than many (including some reading this) can say.

(Photo credit: me)

 

Testing 1, 2, me

Testing 1, 2, me

As I wrote about a week ago, the end of my radiation therapy was less of a celebratory time than it might have been. Upon investigating my personal observation, my doctors agreed that my sarcoma appears to be growing and not shrinking.

I have joked about getting what one pays for with free healthcare, but I must hand it to my team at Tom Baker Cancer Centre. That simple check certainly spun wheels into motion. Their sense of urgency across the board immediately shifted to my sense of urgency.

My lead oncologist jammed me in to his about-to-leave-for-holidays schedule on Monday. While his words were characteristically optimistic that this was no big deal, the tests he ordered and sternness with which he instructed the staff about timeliness indicated that he wasn’t leaving anything to chance.

I was immediately walked over to the front of the line on a biopsy, where they jammed a scooping needle into the mass to pull out cells. The location where it was, freezing wasn’t practical. Good thing needles don’t phase me.

Tuesday morning I was woken at 7 a.m. with phone call from the hospital letting me know that my CT scan originally scheduled for mid-December had to happen that day. I rushed the kid lunch-making process, trusting them to get out the door for school on-time, and took my seemingly-daily trek to Foothills. The night before, I had work prepped for my absence as it felt like this would be a week of needed flexibility.

Unfortunately, when I arrived, the scanning department was surprised to see me. Apparently my rush appointment was at a facility across town, and such a detail had not sunk in to my pre-coffee brain. (Though I stubbornly contend that no location was given to me, since this unprovable claim allows me more dignity.) However, the nurse flashed me my paperwork which had a big “Urgent” stamped on it, so she just put me in the queue where I was. This is not the best way to earn VIP treatment.

The CT scan is the one with a table that slides back and forth through a big suspended ring. There is no enclosure, so claustrophobia doesn’t kick in. Of course, there was a radioactive dye injected in to me… because it had clearly been a few days since I glowed in the dark. Going back and forth, I couldn’t help but think of Homer Simpson being teased by an out-of-reach larger-than-life donut.

This particular scan is more general and had two purposes. The first was to see if the cancer has spread anywhere else it’s not supposed to. The second, and cooler, purpose was to look to see if I have any vestigial tendons in my body. Apparently, some of us are less evolved and have extras around. This is precautionary in case they need to remove any tendons from my hand when they are cutting out my cancer.

But the worst news of all was the ordering of a new MRI scan. Being a man of severe enclosure-based panic attacks, I had sworn that I’d rather just die of the cancer than be entrapped in the tomb of an MRI machine. Now I’d need to live through a second. Long-story short, I took the sedatives offered, fought through the attacks that came regardless, absorbed more radioactive material and lived through it even though the loss of an entire day was my result.

And so now I wait for results of all these tests. If any of them come back as concerning, I will hit surgery quite quickly. (The surgical team involved is quite large, so I am at the mercy of multiple schedules.)

I went through all the pre-op prep on Thursday and have to live my foreseeable future on surgery protocol. The protocol is strange… no aspirin or Advil (to avoid blood thinning), no vitamin supplements, no herbal supplements, no green tea. Once I get the call, no alcohol… until then, something has to take the place of my vitamin D pills, right?

I was originally scheduled for post-Christmas surgery due to my body’s need to recover from radiation and also due to limited staff availability in that time. I’m completely fine with having it sooner, but I must confess… if life-saving surgery means missing out on my Star Wars: The Force Awakens tickets, I might have a difficult decision to make.

 

Zap to it

Zap to it

This morning I finished the last of my radiation treatments. As I described earlier, each of the ten sessions had me laying front-down on a metal slab with my hand clamped down in a three-phase apparatus. I had a technician take some pictures for me one day, which you can see above.

My sister, the curious dentist, asked me to keep the rig for her to check out. Moderately surprisingly, they let me keep the wax overlay and the fiberglass mesh. The blue base, however, accumulates radiation and has to be disposed of in some special environmental protection manner. Do they not know I was putting my hand on there?

Over the course of radiation, I got the constantly-sunburned feeling they said I would get, eased with specific safe lotion. Each treatment also felt a bit like a punch in the gut, and each layered upon the last in terms of a period of fatigue and fuzziness of mind. While not fun, each was tolerable knowing the goal of reducing the number of cancer cells in my hand before a surgery.

So you might imagine my concern and denial when the same white dot that started my whole journey back in summer appeared on my knuckle on the weekend. I brought this to the attention of my doctors yesterday, and a visual and tactile inspection is enough to convince them what I feared… despite all the chemotherapy and radiation, my tumor is actually re-growing rather than shrinking.

And so, this last day of treatment is somewhat anticlimactic. There was a schedule in play for my surgery, and that was already based on a timeframe to allow my body’s immunity to recover from radiation. If surgery needs to be stepped up sooner to avoid full re-growth, I’ll be less able to accept the necessary grafts and to recover afterward.

There are no good answers. For now, I just wait.

 


s_1485_xtbf5npaurk8ktt3dkuwwagkvjkkkdblack_grandeWith my semi-voluntary exposure to gamma rays and the mutant thing that keeps growing inside me, there has been no shortage of Hulk teasing going on. Most people are most familiar with the TV show-era tag line, “You wouldn’t like me when I’m angry.”

As I’m opening up here, I will admit that most of my life I’ve felt a little like Bruce Banner keeping many things suppressed, with the events of my past few years making it even more acute.

But the movie line that rings most true to me comes from The Avengers. Captain America politely suggests, “Dr. Banner, now might be a really good time to get angry.”

“That’s my secret, Captain,” comes the reply. “I’m always angry.”

I’m radioactive, radioactive

I’m radioactive, radioactive

One week ago tonight, I was preparing myself to check in to the hospital for chemotherapy treatment for a rare cancerous sarcoma.

The process began Monday morning with a 7 a.m. check-in to get a PICC line (peripherally inserted central catheter) inserted. Ultrasound was used to create a hole in a vein in my tricep area, insert a tube and navigate it to my heart for the purpose of more direct drug injection. Not terrible, but not the most fun. Unfortunately, the stabby attempts to weave the tube through my right side were thwarted by the cancer in my armpit (did I mention I have cancer in my armpit now?). So, I got to have the entire procedure a second time through my left side.

Plumbing inserted, I was sent upstairs to receive my first of three bags of chemotherapy medicine that would slowly drip at about 47 ml/hour over the course of the next 72 hours. I was given a hospital gown to wear for the duration, but negotiated just before attachment to keep my black t-shirt instead. Between that and my primary concern of wifi instructions, I began to make my mark as an atypical patient on the unit.

The other patients on my floor rarely left their rooms. I was rarely in my room. I took up residence in one of the lounges with laptop, iPad and phone in tow. I was first discovered there when the IV pole and monitoring system that was now my dance partner began to squeal. Apparently it has a short battery life. The scolding staff let me know that if I was going to make camp, it would have to be near wall outlets. Fortunately, a lifetime of constant scanning for airport power outlets had prepared me.

Each change in IV bags meant what to me looked like full-on Monsters, Inc. hazmat suits for the staff with plastic poncho, big gloves and facial blast shield. While they were content to allow this poison to go straight to my heart, what they were very concerned with was where I would pee. I was assigned a specific toilet and no other toilet in the universe was acceptable. With my urine now containing isotopes of humanity-jeopardizing lethality, there were protocols for splashing and much documentation. Unfortunately, the one effect that the chemo had on me was to destroy my legendary bladder reputation and haul me into my lead-lined lieu about seven times a day. My urine seemed clear, but it did smell like it might be able to power a flux capacitor.

Lights-out on the unit took place at 9:00 p.m., though the staff smiled at me as I sat reading in the lounge as the clock rolled past. Shift change was at 11 p.m. and the sight of me sitting on the floor with an array of electronics sprawled over a coffee table lent amusement and curiosity to the staff. They didn’t have to wake me for meds or vitals and I did my best to make them laugh, so they played along until 3 a.m. each night when my nocturnal nature probably clashed with their night-shift quiet time. The second night, my nurse quietly took away the Starbucks coffee my parents had lovingly delivered to me and replaced it with apple juice. Each new nurse joked about odd notes in my chart about my behavior, but I felt well liked.

On the opposite end of the spectrum was my roommate. He was a 50-something man who did not speak English well. On top of his cancer, he had completely lost his short-term memory. He was constantly confused about where he was and ripped out his tubes, including those with the burning toxic chemo medication. When I finally did get to sleep, he would be crashing nearly hourly and the lights flicked on to deal with one emergency or another. My sleep was the last of anyone’s concern. The man’s brother, sister and father were with him constantly and gave him great care. I’m sorry that he is unaware of this and that he has such a long way to go. He made me feel I was greatly fortunate, as did most of the other patients.

As the last drops of poison dripped from the bag, through the tube, the machine, the other tube and into my heart, I was a considerably weaker man than the one who walked in. I had yet to feel the full force of nausea that was to greet me later at home, but even the long-awaited shower brought me back to only a shadow.

One last thing remained before I could leave the building… my first of ten doses of radiation therapy. Weeks ago, a team hand-crafted for me an apparatus meant to keep my hand still during this process. It has a custom form-fitted base, a fiberglass mesh cage that contours to my splayed fingers and locks down with screws, all topped with a centimeter-thick bee’s wax encasement. This is meant to allow for incredibly precise bursts meant to impact cancer cells and avoid the remaining healthy cells. Perhaps more on this later.

The radiation room looks a like something from an X-Men movie. The metal slab sits in the center of a circular space that allows for the robot appendage to spin and dance through the three-dimensional grid of green laser lights. If from my vantage point I could see it, I’m sure it would be quite impressive. But the awkward position I’m in lets me see only a sad low-tech bookshelf.

So, I quietly sing Weird Al Yankovic’s “The Saga Begins”. Partially because it soothes me, and partially because its 5:30 running time is the duration of each of my radiation treatments once the robot starts spinning.

I returned Friday for a second dose, then collapsed to sleep for 27 straight hours… a week’s worth all at once, for me. The time has been unkind, but this first week of my treatment journey has passed quickly with the thanks of many friends… some new, some old.

If you are to be believed, “I got this.”

With your help.