Cancer Can Bite Me » Uncategorized

We Are Moving

PaduanBenedick — Sat, 19 Sep 2009 18:18:03 +0000

Good afternoon, dear reader.

This is a quick post to announce a major change in the life of Cancer Can Bite Me. From this post forward, you can now find me at the new Cancer Can Bite Me, located at http://www.cancercanbiteme.com.

There will be many new additions to the site over time. Please be patient with me as I bring those new features online one at a time.

Perhaps someday we will return to this space, if we find that the new space does not serve our needs. In the meantime, I do hope you will join me in this experiment.

Be well, dear reader. I’ll see you soon.

Namaste.

Day Eighty-Seven

PaduanBenedick — Mon, 17 Aug 2009 06:12:18 +0000

Good evening, dear reader. I hope this post finds you well. It has been an interesting week for me, but I find that to speak or to write about much of it is difficult. Nevertheless, I shall try.

This has been a week of dreams. I’m sure that this is not uncommon – I know that I dream nightly – but I find that I have remembered more of my dreams this week than in any recent time. For any of the comparisons to make sense, I need to give you a baseline of the nature of my usual dreams. I have always had vivid dreams, alarmingly real to me (even when the content is completely incredible), and usually very narrative in structure. I suppose that this is one manifestation of my desire to be a storyteller. I first dreamed in color when I was six years old; prior to that, all my dreams had been either black-and-white or text-based. Yes, text-based, like reading a book or playing Zork.

My first color dream started out in black-and-white. My family and I were in Moscow, fleeing from (I believe) KGB agents. Do note that this was 1983 or thereabout, so the Soviets were still a looming threat at the time and were fantastic fodder for a child’s imagination. We ran across Red Square – an accurate recreation of Red Square I eventually learned (how did I know what Red Square looked like, you ask; good question, and one to which I do not have a satisfactory answer) – under the cover of night and made our way into the sewers. In the wetworks, we sloshed through a series of tunnels, talked our way past several checkpoints (of course I did the talking, who else would?), and were given scuba gear by a helpful maintenance technician who was cleaning the tunnels. We eventually submerged ourselves and began swimming as fast as we could through a long, dark tunnel. When the tunnel ended, everything around me burst into color. I was surrounded by rainbows of fish dancing through blue water. The sun shone into the water from above, and I knew that we had escaped to the Caspian Sea. I swam effortlessly with the bright schools of fish for several minutes before drifting to the surface, where I found mu family waiting for me in a small boat. I climbed in, and we headed for shore. The dream ended before we made landfall. So vivid were all the colors of that dream that I still remember every detail of it to this day.

That is a fairly common example of what my dreams are like. They are stories; they are fantastic and terrible. They transpire in space, on farms, in huge cities, in the past, the present, and the future. And they are real. When I am dreaming, they are as real to me as any moment of my waking life.

So this week was odd. The first dream that I remember from this week was not a story. Or perhaps it was, but one decidedly light on plot. It was more of a musical review. A one-man musical review, and that man wasn’t me. I have a good friend whom here I shall call Grandpa – for reasons that those who know him will understand – who at times seems to enjoy the role of playfully dirty (old) man. He is also a very talented thespian, so I suppose it was not overly shocking to see him in vaudevillian attire doing a softshoe routine across an unfamiliar stage. What was truly odd was that – and I’m not sure how I know this – the year was 1904, and I was the only member of the audience. Further, the songs he sang were often anachronistic, most notably the Andrew Lloyd Webber pieces that he chose. And then there was the drum solo. . . Anyway, not the normal fare for dreams that I remember.

The second dream that I remember from the week was decidedly more narrative in structure and complicated in plot. It involved time travel and an organization of investigators who track criminals through history. It was a bit like The X-Files meets Where in Time is Carmen Sandiego?. I won’t give away too much of the story since I may actually try to write it down someday as a short story; suffice it to say, there was intrigue, danger, and a good deal of fun. What really made this dream interesting, though, was that it continued over two nights; the second night simply picked up where the first left off. I don’t recall very many episodic dreams in the past; actually, I only remember it happening once before. So this was a decidedly unique dream in that regard.

Aside from dreams, this week has brought an interesting array of physical conditions. I am medicated for the cough that simply refuses to go away, but on one occasion a few days ago as I was dozing, I coughed hard enough to force the entire tracheostomy apparatus out of my throat. I came to due to the odd sensations I had as I breathed. My fingertips drifted across my exposed throat, which was mildly disconcerting, so I stepped to the bathroom because I needed a mirror. Before reinserting the tube, I noted for a brief moment the perfect circle of blackness that sits casually two inches above my supersternal notch. While changing the inner cannula of the trach is already a rare visual experience, the whole of the apparatus disappearing into my throat is even more so. This is the second time that I have had to reinsert the device; the first occurred perhaps a month ago. I coughed while changing the collar that holds the apparatus in place; the force caused it to pop out then. That time, I did not hesitate or take time for any examination; I immediately reinserted the tubing. This time, I was less panicked. It is actually very interesting to study. On some level, I am hoping that I am not under general anesthesia during the procedure to remove the apparatus permanently.

A further unusual physical occurrence was that I became quite ill one afternoon after lunch and vomited up what felt like everything I had “eaten” that day. Through my entire regimen of chemotherapy and radiation, I never once became that sick to my stomach. I’m still not sure what caused it. To complicate matters further, I was at work when this happened. That was delightful, let me assure you. Oh, and the vanilla faux-food is thoroughly repulsive in reverse. Fortunately, it is almost time for another shipment of nutrition and supplies. I’m going to try to talk the company into providing at least some chocolate this time around.

Well, dear friend, I must now sign off. I have taken so long to pen this entry that it is now Day Eighty-Eight, and I am exhausted. I think that – as updates have become less frequent mostly because there is simply not much to tell on many days – I need to redesign my entry titles. Perhaps I shall find something thematic to use. I will, however, try to write more often that I have been lately. I am working to correct my anemia; hopefully this will give me more energy.

Until next time, dear readers, take care of each other.

In music, in the sea, in a flower, in a leaf, in an act of kindness… I see what people call God in all these things.
- Pablo Casals

Day Eighty – The End of the Beginning

PaduanBenedick — Sun, 09 Aug 2009 19:45:37 +0000

Good day, dear reader. As I write this, I am amazed by the sense of calm that now surrounds me. I have been blanketed in it for much of the weekend. You see, it started on Friday, which was a very good day.

On Friday morning, I enjoyed a moment of quiet victory as I stepped out of the radiation clinic and into the sunshine as a free man. I carried with me a reminder of the long journey I had just completed; the frame that had served to bind me to the table felt incredibly light in my hand. The experience was surreal and overwhelming. The frame now sits quietly in the corner of my bedroom. I think I shall mount it on the wall in my office; it shall be my trophy of a successful hunt for cancerous microbes.

The calm of this weekend comes, of course, on the heels of a very difficult week. On Tuesday, I began coughing up blood. I noticed this as I was cleaning up after another mucus monkey attack; my first thought was that the mucus monkey army was now emerging from my trach tube armed or having undergone some coming-of-age ritual, since the mucus was now tinged with red. Of course, it was 2:30 am when I made this discovery, and I remember thinking, “Why worry now? It’s not like I don’t have an appointment to see a physician in five hours anyway. . .” As it turns out, the doctor was not at all worried. He said that the radiation has caused extensive swelling and irritation in and around my trachea, and that the tracheostomy tube is likely scratching against the already irritated inner lining of my trachea. This contact draws a small amount of blood, which has a ready made escape route. The doctor indicated that this should dissipate after the treatments end and the swelling fades. I do hope this happens sooner rather than later, I must admit, as I grow increasingly tired of the swollen throat, neck, and everything else.

The swelling grew significantly worse this week, as did the radiation burns across the skin of my neck. When the radiation technicians refocused my treatment points for the final week of treatment, they apparently used the same overall amount of radiation on a smaller area, so in that area the side effects intensified. I have, for the moment, given up all oral consumption – not just food, but liquids as well. Swallowing is simply too painful at the moment. And even water tastes bad now (very briny, if you’re curious). I will rest for a week or so, then try again. The radiation burns now cover approximately seventy percent of the circumference of my neck. Even worse, the burns make the flesh stick to the collar for my trach tube. So whenever I readjust the collar, I have this tendency to flay myself lightly. Truly a wonderful experience..

I have been given medication to stifle the cough at night. This is beneficial for a number of reasons. First, the less I cough, the less mucus I have to deal with. I have grown accustomed to covering my trach rather than my mouth when I cough (I wonder if that habit will persist even after the tube is removed) so as to wrangle immediately any of the mucus monkeys that would prefer to hide amongst the bedclothes. There are few sensations quite as revolting as rolling over in bed and your hand/ear/nose/shoulder lands softly in a cold pool of goo.

The second benefit from the medication is a reduction in side effects of the coughing. On the bad nights, when several extended coughing fits hit, my throat swells. Not too much, overall, but when one is wearing a collar even the slightest swelling can make the collar restrictive. Add to that the radiation burns and you’ve got a serious party.

I have received many questions about what will happen next, what the next stage is. To be honest, I don’t really know yet. I have an appointment this week for an injection to help me recover from the mild anemia that I developed during treatment. At the end of the month, I have a follow-up appointment with my radiation oncologist. Next month I have a CT scan scheduled, along with a consultation a few days later to read the results. At some point, I will have an appointment with the surgical oncologist at Vanderbilt who performed my surgery. Apparently, the final decision as to the timeline for removal of my trach tube is his. I have every intention of convincing him that NOW is a fantastic time. I have heard that there is a minimum three week waiting period following the end of radiation and chemotherapy, but that that period is designed to guarantee that patients are capable of swallowing. While it may be painful, I believe I can pass this test. I’ll down a whole bottle of water in front of the man (a feat which, I can assure you, would be quite painful) if it will help my case.

I hope you are well, dear reader. I apologize, but I must now sign off. Would it surprise you to know that writing even a short entry such as this one can be incredibly taxing? At this point, I need to sleep.

Until next time, dear friends, take care of each other.

Mast Qalandar.

A History of My Disease

PaduanBenedick — Sun, 28 Jun 2009 23:28:28 +0000

Good day, dear reader. This afternoon seems a good time for a slow step back through history. I’ve received some questions about the chronology of my disease and its progress, so I think a full retrospective is in order. Since I’m not sure exactly when my original health issue became cancerous (or, for that matter, whether it was in the first place or not), I’ll be stepping back a bit further than you might imagine. Please keep in mind that I’m scribbling this from memory, so there may be a few inconsistencies in dates and such; I suppose I could look back through the files of paperwork that I have, but that seems a bit excessive at the moment.

The first symptoms of the initial infection date back to November or December of 2005. I had been visiting my parents for either Thanksgiving or Christmas (I honestly don’t remember which it was, but it was more likely Christmas). At the time, they lived in Michigan, about a twelve hour drive from my home. On the drive back, there was an occasional, sharp pain on the left side of my tongue. I assumed that I had bitten it without noticing, or that there was some other minor complication, like when you get an infected taste bud that swells up and becomes uncomfortable. At the time, I didn’t think too much of it. However, over the course of the next couple of days, the pain didn’t subside, and I noticed a mild discoloration in the area. So, I decided to visit the doctor to let him take a look.

Upon my first visit to the doctor – this one a general practitioner – he quickly diagnosed the problem as a viral infection. He informed me that the cause of the irritation was likely a cousin of the common herpes simplex virus to which more than eighty percent of the population over 18 has at some time been exposed. He explained that most people’s immune systems can deal with the virus without symptoms ever becoming visible, but that things like sleep, poor diet, etc., can weaken the immune system and prompt an irritation to occur. The doctor made the requisite, “Who you been kissing?” joke (which did not go over as well when I got home and told this story to the woman who was my wife at the time) before informing me that eventually there would be a cure, but that for the moment it was necessary to treat the symptoms. He wrote a prescription for an amalgam mouthwash – the two major ingredients that I remember were an anesthetic and an antihistamine – and told me to use it twice a day for until the symptoms subsided. After I started using the mouthwash, the ulcer disappeared within three or four days.

Over the next three years, the ulcer would come and go. It was always in the same place, always about the same size and color. It would recur perhaps once every four to six months. For the first few recurrences, I returned to the doctor’s office to have it examined. The results were always the same. There was never any mention of alternate explanations or the possibility of the need for a biopsy. The doctor seemed convinced that his diagnosis was correct; I did not question him. Each time, he would order a refill of the same mouthwash; each time the ulcer would disappear within a week.

: To answer a question that came in through email – no, in this span of time, no alternate diagnosis was ever mentioned. There were no mentions of tests, biopsies, or other means to confirm or refute the doctor’s diagnosis. He was confident that his diagnosis was correct; the medication worked as he predicted, so I didn’t question him. I probably should have, but more on that later. Specifically, even the possibility that this was cancerous was never mentioned. And it simply didn’t cross my mind.</UPDATE>

On Christmas Eve of 2008, I awoke with a low-grade fever and basically felt like crap. It was nothing major, just a touch of the flu or an upper respiratory infection or something. It passed after about a week, but the interference with my immune system prompted another outbreak of the tongue ulcer. At first, I didn’t think this was a big deal, as this would be the sixth or eighth occurrence of the infection. I assumed that the traditional treatment would have the same results. Suffice it to say, the treatment proved less than effective this time around. Over the next couple of months, the ulcer persisted; it neither (particularly) worsened nor improved. By the beginning of March, there was growing concern on my part, so I scheduled another visit to the general practitioner. At this time, he conceded that he was uncertain why the ulcer (which should probably be called lesion at this point) was not healing as it had in the past, and he referred me (finally) to a local otolaryngologist, more commonly referred to as an “Ear-Nose-Throat Specialist” (ENT).

On my first visit to the ENT – about two weeks later – he reviewed the history of the condition and agreed that it was possibly a viral infection. In addition to prescribing a variation of the mouthwash that had been working over the past few years, he added an anti-viral medication as well. We scheduled a follow-up visit for one month later. By the time of the follow up appointment, the lesion had visibly worsened. At this point, the ENT indicated that he wanted to to a biopsy prior to continuing medication. So a week later, a biopsy was conducted; ten days after that, I was informed that the results were positive for cancerous growth – specifically, squamous cell carcinoma, which honestly meant very little to me at the time. I was scheduled for a consultation with an ENT cancer specialist at Vanderbilt Medical Center on May 22nd of this year.

Over the next couple of weeks, the lesion on my tongue continued to worsen. There was open, sometimes continuous bleeding. I would wake in the morning with bloodstains on my face and pillow. It was an all around charming experience. I returned to the local ENT’s office to have the damn thing cauterized. Attempts were made using silver nitrate to close the bleeding areas up. These would usually hold for somewhere between twenty-four and forty-eight hours. Then the lesion would rupture again, the bleeding would recommence, and life became even more unpleasant.

While all of this was happening, I was trying to avoid things that I found exacerbated the problem – like eating and talking – so I began dropping weight and wasn’t a particularly social creature. Plus, I was in a hell of a lot of pain. Adrianne and I were in rehearsal for a play at the time; I tried to confine my speaking to only those times most necessary at the office and when I was on stage. By May 6th, the bleeding had become basically unstoppable. I returned that day for to the local ENT for the third attempt at cauterization. The physician’s assistant who was conducting that particular procedure consulted with one of the physicians on staff, and I was referred to the local emergency room for a more dramatic cauterization that used some form of electrical impulse (as I understand it; I was asleep at the time). Adrianne and I went to the hospital, I was admitted, and we eventually met up with my doctor. He explained the basics of the procedure, and I was prepped for surgery.

When I awoke, I was in the back of an ambulance. I first noticed that I was unable to speak and that there was a tube protruding from my throat. This was unexpected. And a bit uncomfortable. And all around unpleasant.

It was the morning of Thursday, May 7th, and I was on my way to Vanderbilt. The exploratory surgery (and follow up rubbishy bedside manner by the surgeon there) would be the next day. The following Tuesday, I would lose my tongue.

When cancer – or any disease, I suppose – claims part of your body, part of your skill set, there is the temptation to indulge oneself in the could/would/should triad of blame-guilt. And there’s been quite enough of that to go around, apparently. I learned today that there are others who blame themselves for my losses, who feel they should have said something sooner, encouraged more medical responsibility. Hell, I could have been less trusting and more inquisitive – usually I am, why not this time? Maybe Adrianne is right – maybe I was afraid of the answer and just didn’t realize it consciously. Maybe.

But I have to ask myself a few things before wading out into that sea of guilt and regret. What have I lost? I can still taste. I can still speak. In eighteen months, no one who doesn’t know me personally will be able to tell that I have a speech impediment. Yes, this is one of my goals for myself. Never tell me the odds¹. My surgical margins are clear. We’re treating whatever microscopic minions are hiding out with chemotherapy and radiation. I will have a full, normal, healthy life.

What have I gained? I got my brother back.

I’ll take cancer any day.

You see, on the day of the exploratory surgery, when they installed a patch to staunch the flow of blood from the lesion, as I was recoving in that delicious semi-conscious state of drugdom, my family was told of everything to which I could look forward. Knowing me as they do – and how stubborn I can be – my family was not completely convinced that I would agree to the glossectomy. They saw, rightly, how deeply this would affect my life. My speech – and being so enamored of the sound of my own voice – was such an integral part of who I was (and, to an extent, still am) that they worried that I could not make the choice to give it up. Adrianne shared with me the pain and anguish that they all felt that evening, the hesitation and the inability to visit me for fear of cracking under the burden of knowledge that I did not yet possess. I understand their suffering on that evening, and I am sorry that they had to deal with that pain.

The next day, Saturday the 9th, the surgical team explained to me all that would be necessary. Given the options, I chose the surgery (obviously). You have the rest of the story already – leading up to my discharge from Vanderbilt on May 20th, two day before my initial scheduled consultation. Had I waited, it is likely that I would not have survived. Of course, I did recieve a reminder phone call about that consultation on the 21st. That was sweet of them.

Until next time, take care of each other.

There are two mistakes one can make along the road to truth — not going all the way, and not starting.