Cancer Can Bite Me » Daily Update http://www.cancercanbiteme.com A Journal of Recovery Mon, 30 Aug 2010 18:57:25 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 忍 – To Bear Patiently http://www.cancercanbiteme.com/2010/08/17/%e5%bf%8d-to-bear-patiently/?utm_source=rss&utm_medium=rss&utm_campaign=%25e5%25bf%258d-to-bear-patiently http://www.cancercanbiteme.com/2010/08/17/%e5%bf%8d-to-bear-patiently/#comments Tue, 17 Aug 2010 19:26:29 +0000 PaduanBenedick http://www.cancercanbiteme.com/?p=445 There are things more insidious than cancer. Cancer is like most pop music – it’s not good, but it grows on you. And, sometimes, you can actually tell this is happening.

The insidious things happen in the background. They’re the dehumanizing things that treat people like numbers and risk percentages. Yes, I’m looking at you, insurance companies.

Over the past year, I have realized how desperately fortunate I have been to have such fantastic insurance. Sure, I’ve paid thousands of dollars of hospital bills and have thousands more to go, but I’ve only been responsible for a little over ten percent of the total. (Yes, the costs of surgeries, hospital stays, chemo, and radiation added up to quite a festive number.) But now there’s a new wrinkle. For over a year, I’ve been planning reconstructive surgery – including dental implants and a speech prosthetic – so that I can eat more normally and speak more normally. I would dearly love for my primary diet to consist of more than just the liquid supplement (always and only vanilla) dutifully delivered once a month to my door. At this point, I would swap a kidney for a cheeseburger.

I have now learned that my insurance company has declined to pay for the reconstruction and associated treatments. Even though I was told over a year ago that these would be covered.

If I had to guess, this is how I would imagine this went down. Some bean-counter (apologies to any accounting professionals reading this) somewhere did a little math. And that math looked something like this:

COST OF MONTHLY SUPPLEMENT DELIVERY * LIFE EXPECTANCY (in months) < $20,000

Basically, as a cancer survivor, I’m not expected to live long enough that the cost of the surgery and related procedures/prosthetics (just under $20,000) will exceed the anticipated cost of providing all those cases of delicious, delicious garbage-water. As a delicate and tactful reminder to said bean-counter:

Dear Sir or Madam,

I wasn’t supposed to survive the surgery. Back when I had cancer. Plus, chemotherapy is basically the practice of pumping one’s entire body full of toxic chemicals. And I received three different kinds of those. My favorite potential side effect on the list was “death by anaphylaxis.”

Now I’m cancer free. Or so says every test I’ve had in the past year. I’ve survived everything this damn disease has thrown at me. Now we’re going to haggle over a few measly bucks? Seriously?

Needless to say, I’m appealing the decision. However, the appeals process appears to be one of those that’s going to take a very long time. And I’m a big fan of having teeth. And solid food. And a steak would be really nice. For both my physical and emotional well-being.

One of the more difficult things to process over the past year has been the too gradual reacquisition of certain skills and abilities. A prime example would, of course, be chewing. I’ve made some progress when it comes to eating, but I’m still basically stuck at meatloaf and mashed potatoes. Plus, it takes forever to eat a meal. I know these may sound like petty things to complain about, but there have been times when I’ve been tempted with thoughts like, “I don’t want to live like this.” Which is a very depressing way to live. Thoughts like that turn living into surviving. I’ve learned that there’s an enormous difference.

But here’s the silver lining – I have a plan.

With up to a year of appeals paperwork before me, and yet with a fervent desire to eat a sandwich (yeah, I never was a big bread fan until I couldn’t manage to eat it anymore), I’ve accelerated a personal side project as a potential asset. I have been working on an album – my debut release, as it were – for the past year. The songs have been written almost exclusively over the past year (I’ll probably throw in a couple of my older compositions for fun). They’re mostly instrumental mood pieces that paint the emotions I’ve felt since my original diagnosis. I had initially planned to release the CD next spring, but – given my sudden and unexpected need for additional revenue – I’m opening up pre-orders of the album today.

Yes, I realize this is shameless self-promotion. But I’m asking for your help. Details about the album are available on the CD Release page of this blog. The scheduled release date is December 14th, 2010, and I’ll post a preview track soon. Think of this as early holiday shopping, if you’d like. 100% of the proceeds from the CD pre-sale will go towards the cost of surgeries and other medical expenses. If you’re interested, I’d appreciate any help. If not, I’d appreciate word-of-mouth advertising to friends, family, and social networks.

I hope no one is offended or feels exploited. If so, I sincerely apologize. I’ll keep you posted on how the appeals process proceeds.

Until next time, be good to each other.

If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people. ~ Thich Nhat Han

——-

The title of this post is drawn from 隐忍 (yǐn rěn, Chinese), half of which is tattooed on my left arm.

]]> http://www.cancercanbiteme.com/2010/08/17/%e5%bf%8d-to-bear-patiently/feed/ 0 An Anniversary of Sorts http://www.cancercanbiteme.com/2010/08/16/an-anniversary-of-sorts/?utm_source=rss&utm_medium=rss&utm_campaign=an-anniversary-of-sorts http://www.cancercanbiteme.com/2010/08/16/an-anniversary-of-sorts/#comments Mon, 16 Aug 2010 17:39:10 +0000 PaduanBenedick http://www.cancercanbiteme.com/?p=406 Dear Reader, let me begin by apologizing for my long absence. The past year has been a whirlwind of insanity, but there is calm on the horizon. I think.

I’ve wanted to come back to this blog for several months. The anniversary of which I write is being one year post-treatment (chemotherapy and radiation). Since the spring, I’ve found that something interesting has happened. I’ve gone from living with cancer to living after cancer. I’m surprised at the difference in the two. If you remember, this whole ordeal was supposed to kill me.

Don’t get me wrong, I’m not in any way intimating that I’d prefer to be dead. And I’m coming up on the CT scan and review that should confirm that all is well (3 September, for those who’d like to keep track), but all previous scans have been completely clear.

So, there’s a bit of psychological re-engagement going on, and it’s been a bit of trouble to process on some days. When the doctor says you’re not going to last a year, you make certain sacrifices to extend whatever time you have left. When the veil of impending demise is lifted, those sacrifices become permanent. This is a new series of angsts to process.

Sure, there are ways to deal with the angst. And I’m working through it. I think writing again will help. I’ve hesitated about restarting the blog because I’m afraid there will be a bunch of maudlin crap thrown out at whomever decides to read these words. I assure you that there’s far more hope than there seems to be right now. All in all, everything is fantastic. I’m alive and enjoying it. I have a wonderful wife – whom I love and adore more than I could ever write for all the ways she has held me up – and a wonderful family, all of whom have supported me over the past eighteen months in ways I never expected. I have a circle of friends who give me strength.

But sometimes I have doubts. And fears. And sometimes I feel like a burden – emotional, financial (cancer is a damn expensive hobby; I seriously advise against taking it up), physical.

So phase two of the blog begins. I hope you’ll stick around. Apparently, I’ve got a lot of living to do. And I mean to enjoy every second of it.

]]> http://www.cancercanbiteme.com/2010/08/16/an-anniversary-of-sorts/feed/ 3 Long Week Falling http://www.cancercanbiteme.com/2009/09/13/long-week-falling/?utm_source=rss&utm_medium=rss&utm_campaign=long-week-falling http://www.cancercanbiteme.com/2009/09/13/long-week-falling/#comments Mon, 14 Sep 2009 02:37:23 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=377 Warning: This post contains language that some may find offensive. Proceed with caution.

Good afternoon, dear reader. I hope this weekend finds you well and relaxed. This has been an interesting week with many conflicting emotions for me to battle. I’m doing my best to stay positive, but doing so has proven difficult several times over the past few days.

The major occurrence this week was a visit to my surgical oncologist. This was the first time I’ve seen him in three months or so. True to his nature, he has retained his very skillful approach to his practice of medicine as well as his totally rubbish bedside manner. After the standard weigh-in and minor interrogation by one of the staff nurses, I was visited by a junior doctor, one of the new members of my oncologist’s team. Apparently, those interns/residents with whom I spent my time in the hospital have gone on to better things. However, this new resident (I’m assuming) informed me that my case had become somewhat legendary around the hospital corridors. I found that mildly amusing.

Finally, the oncologist himself arrived. After a few more questions and a brief examination of my airway, he consented to the removal of my trach tube. While at first the sensation was awkward, I acclimated very quickly. Suffice it to say, I’m thrilled to not have something lodged in my throat at all times. As he continued the exam, he was explaining the surgery to the new resident. As though he were oblivious to the fact that Adrianne and I were in the room, he made statements like, “This was as bad as a cancer of this type can be.” Once he finally acknowledged my presence again, he added, “We’re not out of the woods yet.” He then scoffed at the mention of the CT scan that was scheduled for two days later (by my chemotherapy oncologist) saying that I was not sufficiently past radiation therapy for the images to be of any use. He said that he wouldn’t ask for a CT until six months after radiation was over. When I offered to have the imaging center send him copies of the scan, he said point-blank, “No, they’ll be useless.” Charming, right? At least he’s a talented surgeon.

What gets to me is the fact that this gets to me. I hear the indifference in his voice and the warnings in his words, and I am immediately pulled back to the exact same place I was four or five months ago when this was going to kill me. I feel like all my progress is gone, all my resolve is gone, and I feel the same fear that almost overwhelmed me when this all began.

I don’t like feeling that way. I don’t want to feel that way. Quite frankly, I shouldn’t have to feel that way. A healthy respect for the legitimate concerns posed by this disease is one thing. Doom-and-gloom from a jackass physician is something entirely different. Is there no glimmer of hope, Doc? Really? My surgical margins were clear. The PET scan that was conducted before I began radiation therapy showed no signs of cancer anywhere in my body. I threw a (virtually) experimental combination of chemotherapy drugs at this monster while undergoing thirty-five radiation treatments (on the large side of the spectrum of radiation treatments). Not out of the woods? Thanks. Good to know. P.S., you’re a dick.

As for the rest of the week, I suppose it went alright. I think I’ve been hampered by the brush with the physician more than I consciously realize. I haven’t slept well. For much of the weekend, I simply felt off somehow. It’s hard to explain. Perhaps my subconscious is trying to tell me something, but I haven’t yet figured out what it is. Perhaps my subconscious doesn’t really exist.

Have you ever thought that you may be a figment of your own imagination? I’ve felt like that quite a bit lately. The person I was six months ago is gone. He simply does not exist any longer. For that matter, nor does the person who sat down and began penning this entry several hours ago. Between those times and now, there have been thoughts and ideas and fears and revelations that distinguish me from those men. The only me I know to exist is the one who is here at this very moment. Why should I fear my own mortality, my own death? The I who is is neither the I who was nor the I who will be.

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

If you would be a real seeker after truth, it is necessary that at least once in your life you doubt, as far as possible, all things. —Rene Descartes

]]> http://www.cancercanbiteme.com/2009/09/13/long-week-falling/feed/ 2 Wrestling with Ennui http://www.cancercanbiteme.com/2009/09/06/wresting-with-ennui/?utm_source=rss&utm_medium=rss&utm_campaign=wresting-with-ennui http://www.cancercanbiteme.com/2009/09/06/wresting-with-ennui/#comments Sun, 06 Sep 2009 05:35:21 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=373 Good evening, dear reader. I hope this evening finds you well. As you probably deduced by the title of this post, I find myself feeling a bit off today. I had thought to find virtue in making a more forceful attempt to return to life as normal, and perhaps it is working to some extent. Maybe I’m just having an off day; I’m still allowed to have those, right?

It’s just that they still seem too frequent, I suppose. When I was in the hospital, and when I first came home, I gave myself permission to feel “off,” so to speak. But I returned home on May 21st, three-and-a-half months ago, and I think that I subconsciously rescinded that permission somewhere along the way. I don’t actually recall doing it, though. Since then, I’ve returned to work, returned to the theatre, kept writing, started teaching again, signed up for an class that should have me thinking quite a bit about some things I find very interesting (it begins on the 16th of this month, so I’ll write more about it soon), reorganized my personal space at home – You remember when I wrote about the desk that Adrianne had purchased for me? I’ve added a small bookshelf with reference materials and filing space next to it, a few external hard drives and a second display for my laptop, and now all I need is a more comfortable chair. It’s really quite delightful; I’ll take some pictures of it soon and show you. – but I still feel out of it sometimes.

OK, more than sometimes. Let’s try often. And it’s mostly when I’m thinking. (I guess I should stop that.) When I’m at work, I’m too busy to focus on things like how I feel, unless I’m in an abnormally large amount of pain, and that lack of focus allows me to accomplish things. At home, it’s somewhat the same. When I can bury myself in a project – be it one of personal interest or just something around the house that needs to be done – I have the opportunity to leave behind the limitations that I feel so often throughout the day.

Like fatigue. I had every intention of taking care of some household chores that needed to be done this afternoon/evening. What happened instead? I made the mistake of sitting down, which lead to lying down, which led to sleep. For several hours. Even though I’d had an afternoon nap not three hours earlier. And I’m still tired. Adrianne has suggested that I start doing yoga again; I think it’s a brilliant suggestion. I just hope that I can convince myself to crawl out of bed a half-hour earlier every morning to start up my regimen again.

But will that allow me to feel less disconnected from everything? I hope so, but I’m honestly not sure. I need to reconnect; I know that. But there’s so much stress, and so little time already, that it will be difficult.

I need to get myself together. I know that. I am allowing myself to drift through my days, and this is a lack of focus that I cannot afford (and I mean that both literally and figuratively). I have too much to do.

So, if anyone knows a good resource for exercises for the moderately disabled, I’m all ears. I really could use some information. I’d like to start jogging again (ok, allow me to rephrase, I’d loathe to start jogging again, but I recognize that it would be very helpful and healthy; there, you happy now?), but I feel the baby steps of walking around the block with my cane a few times would be the better place to start.

I don’t know. I’ll figure something out. While I know that I will never be the person I was before all of this, I have to find a way back to the same vision. If that makes sense. Probably not.

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

The mind selects, enhances and betrays; happenings fade from memory; people forget one another and, in the end, all that remains is the journey of the soul, those rare moments of spiritual revelation. What actually happened isn’t what matters, only the resulting scars and distinguishing marks. – Isabel Allende

]]> http://www.cancercanbiteme.com/2009/09/06/wresting-with-ennui/feed/ 5 Sometimes I Surprise Even Myself http://www.cancercanbiteme.com/2009/08/27/sometimes-i-surprise-even-myself/?utm_source=rss&utm_medium=rss&utm_campaign=sometimes-i-surprise-even-myself http://www.cancercanbiteme.com/2009/08/27/sometimes-i-surprise-even-myself/#comments Thu, 27 Aug 2009 05:53:24 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=360 Good (wee-hours-of-the-) morning, dear reader. Thank you for joining me on this insomnia fueled ramble. I thought I should tell you about a moment today when I managed to surprise myself. Yes, I know, you could tell that from the title of the entry, couldn’t you? What can I say, it’s after midnight, and I’m not necessarily firing on all thrusters at the moment.

Anyway, I recently started a second blog for professional development. It will mostly be essays and entries regarding the intersection of educational best practices, technology and Internet developments, and computer geekery. For example, the first entry that I wrote is an explanation of an application for Mac OS X that I wrote last week. The next entry I’m planning concerns my concept of education and why many curricula today are much less efficient than they should be.

But the surprise wasn’t in an entry. Rather, is was found in one of the small sidebar elements that contains my contact information. As I was filling it out, I added some supplementary text that reads, “Have a question about one of the articles on this blog? Interested in further discussion? Do you need a conference speaker or a trainer for your staff?”

Let’s take a look at that last sentence, shall we? Did I just offer to speak at a conference? Yes, apparently I did. On one hand, this is not particularly groundbreaking. I have spoken at more than two dozen conferences and training sessions across the region over the past three years. On the other hand, I had a tongue for each of those occasions. Yet as I was setting everything up, the offer to speak seemed like a natural thing to include. It didn’t really hit me until several hours later, and I thought, “Wow, what if someone were to email me about a conference? Wouldn’t that be . . . different.”

Yes, it was a surprise. And I think there are two ways I can look at this. The first is that I have still not accepted my current plight, that I am still somewhere in the early stages of grief, and that none of this is real to me yet. I don’t believe this to be true. The second – and much more hopeful – interpretation is that, even subconsciously, I am refusing to allow my current condition to interfere with my life. I am pushing forward, fighting to maintain the same life I had a year ago. Suffice it to say, I am much more fond of the second interpretation.

That second interpretation is reinforced by a dream that has become recurring over the past couple of weeks. If I remember correctly, I’ve had the dream four times now. Much of the details are vague; I’m in a room, there are people there, a conversation is being had. About these elements, I can be no more specific than that. However, there is one strikingly vivid part of the dream, and that is what is taking place inside my mouth. As the conversation continues, I find that I want to participate, but I am having difficulty communicating. So I close my eyes (and at this point, the point-of-view in the dream shifts; now I am seeing everything as though through a camera placed at the back of my throat and pointed out the front of my mouth) and concentrate on my tongue. I pull, slowly at first, but forcefully, upward with it. Gradually, the edges begin to peel away from the bottom of my mouth where they were sutured. The edges rip a little, but there isn’t really any pain. Slowly, more of my tongue is freed until, at last, it has been completely liberated from its restraints. It isn’t quite like a normal tongue; it is not smooth and moist. It’s more like something out of a Stan Winston catalog; it is lumpy, variegated, and dry.

But it is functional. I can move it. And with it I can speak. Once I have freed it from bondage, I am able to communicate much more clearly.

Yes, I realize that the situation I have described is only infinitesimally possible. But the scenario for which it is a metaphor is far more possible. And I choose to believe in it. Which I’ll tell the audience the next time I speak at a conference.

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

It is a great art to laugh at your own misfortune. – Danish proverb

_______________________

Post-script: I would be remiss if I failed to mention the passing of Senator Kennedy. To borrow from myself:

Remembering Senator Kennedy, and noting that he passed on the eve of 89th anniversary of the day the 19th Amendment went into effect (giving women the right to vote). Let us celebrate a career of women’s rights, civil rights, and economic and health legislation, a career dedicated to fighting for all those who needed a champion.

Huic ergo parce, Deus:
Pie Jesu Domine:
Dona eis requiem. Amen.

]]> http://www.cancercanbiteme.com/2009/08/27/sometimes-i-surprise-even-myself/feed/ 3 Don't Make Me Kill You http://www.cancercanbiteme.com/2009/08/18/quick-hit-dont-make-me-kill-you/?utm_source=rss&utm_medium=rss&utm_campaign=quick-hit-dont-make-me-kill-you http://www.cancercanbiteme.com/2009/08/18/quick-hit-dont-make-me-kill-you/#comments Wed, 19 Aug 2009 01:56:00 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=354 Warning: This post contains profanity. If you are easily offended, may I suggest that these aren’t the droids you’re looking for, and that you move along. Thank you.

Good evening, dear reader. I am settling well into the cycle of sleep-work-domesticity-rinse-repeat that is life, and I’m actually quite happy. I love Adrianne and the kids more every day. My job is enjoyable – not my dream job, mind you, but I’m working on that. I’ve got time for creative endeavors, and recently I’ve found new strategies for unleashing creativity1 (so much so that I now have too many projects going, one could argue).

So what could possibly make me want to visit bodily harm upon another human being? Well, I’ve got a story to tell, and I promise you it’s true. . .

I have recently returned to answering the phone at work. For the past five or six weeks, my office phone went straight to voicemail, and a computerized voice informed the caller that I have recently undergone surgery and am unable to use the phone. The voice then provided my email address and asked the caller to contact me there. Not surprisingly, I still got voice messages in which people would leave their return numbers. Bloody brilliant.

Well, now – instead of my laptop talking to whomever is calling – I answer the phone. I state the name of the organization for which I work and my first name. Then the conversation goes a bit like this.

Me – [identify organization and self]. How may I help you?

Caller – (hesitantly) I’m trying to reach [insert my full name here].

Me – This is he.

Caller – But. . . Wait. . . I mean (slowly, usually more loudly) [my full name].

Me – (to myself) I’m the one with the speech impediment, jackass. Your speech is already clear, the Foxworthy drawl notwithstanding. (out loud) Yes, sir/ma’am, this is he.

Caller – This is him?

Me – Yes.

Caller – You mean the guy from [some random conference or training session where we met sometime in the past eighteen months].

Me – Yep, that’s the one. This is he.

Caller – Really?

Me – (internal monologue) No, fartknocker, he’s out drinking, and I just enjoy fucking with people. Now what the hell do you want? (external dialogue) Yes, sir/ma’am. Really. How may I help you?

Caller – You don’t sound like yourself.

Me – (internal) No shit. Thanks for reminding me. Quit wasting my time, dickhead. (external, and dripping with sarcasm) I know. I had surgery a few months ago. Now I’m relearning how to speak without a tongue. (cheerfully) How may I help you?

Caller – Oh. . . I’m so. . . But. I thought. . .Real? . . . I was just calling. . .

Me – (internal) OMG, if this takes any damn longer, I’m going to reach through the phone and smack the shit out of you. (external) Is there something I may help you with today, sir/ma’am?

Eventually, the caller gets to the point. Eventually. If this had just happened once today, it probably wouldn’t have fazed me. It happened six times. Sure, there were variations in the blather; some callers adapted to the situation with slightly more ease than others.

I know that I’m being overly sensitive. I’m aware of that fact, but I don’t really care. When one caller today asked if I was kidding around with her, I really wanted to elevate my voice and utilize verbiage that would likely have resulted in my termination. I’m not supposed to call one of the stakeholders in our organization “dumb bitch,” after all. At least not to her face. Or ear. Whatever.

Eventually word will get around that I “don’t sound like myself.” I’m sure that will help. In a few months, I’ll get the prosthetic that will help me speak more clearly. Perhaps the combination of the prosthetic and dentures will help with the salivation issues that I’m having (I was warned of potential dry mouth; actually, I can’t stop drooling on myself – horrible when I’m on the phone) since they’ll be covering up some of the tissue in my mouth that causes salivation when stimulated. Maybe I’ll have some speech therapy.

The point is – I know this is a temporary situation. I know I’m spitting into the wind over something that will not be an issue in six to nine months.

But it is an issue now. And it bugged me. And it got me down. What can I say, it hurt my feeling.

So thanks for listening. I really do appreciate it.

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

Kites rise highest against the wind; not with it. – Winston Churchill

______________

1 – Have you ever heard of Merlin Mann? If you’re interested in fueling your own creativity, there are recordings of some fantastic lectures by Mr. Mann that will blow your mind. Drop me a line (paduanbenedick [at] gmail [dot] com) if you’d like some help tracking them down.

]]> http://www.cancercanbiteme.com/2009/08/18/quick-hit-dont-make-me-kill-you/feed/ 4 Day Seventy-Four http://www.cancercanbiteme.com/2009/08/02/day-seventy-four/?utm_source=rss&utm_medium=rss&utm_campaign=day-seventy-four http://www.cancercanbiteme.com/2009/08/02/day-seventy-four/#comments Mon, 03 Aug 2009 02:37:09 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=329 Warning: This post contains the judicious use of profanity and is rated PG-13. Please proceed at your own risk.

Good evening, dear reader. Sorry, no attempt at a clever little subtitle this evening; I just don’t think I have it in me tonight. As you can perhaps deduce (or, if you follow me on Twitter, you already know), I’m a bit overtired at the moment. You see, I was productive today.

Yes, that’s right, productive. For the first time in months, I mowed the lawn (or the back yard, at least). Granted, this may not seem like a big deal, and it’s probably not – truth be told – but for me, it is a good feeling. The way I look at it is this – I earned this tired feeling; I worked for it. That makes it much different from all the other feelings of tired that I’ve been having of late. See, those tired feelings were a sign of weakness, my body was weary from the illness and treatments and side effects – and the fatigue that those brought on made me feel weak.

Today, I feel strong. And it is good.

I still have more to accomplish this evening, and my list may or may not be successfully completed. But I took a big step today, so I’m satisfied. I’m beginning to think that this is a fundamental part of my overall progress as I work toward recovery – perspective. I have repeatedly encountered others – doctors, fellow patients, former patients, cancer survivors, all kinds of people – who will contend that event x, whatever it may be, is impossible, or that event y is unavoidable. And perhaps most empirical evidence would validate those suppositions.

However, simple historical patterns do not universal directives make. I was originally given a 30% chance of survival. To borrow a turn of phrase from everyone’s favorite scoundrel, “Never tell me the odds.”

I was told that I would never eat real food again and that I would have the PEG tube for the rest of my life. I currently have ten teeth, yet I am already eating real food. I have eaten soups ranging from a smooth, creamy bisque to a chunky, hearty stew (ok, so that didn’t go as well as it could, but I ate some of it). I’ve eaten eggs. I have eaten one french fry. Some of these may have been difficult, even frustrating. But I accomplished them. Imagine what will be possible in three months when I have a full set of dentures.

I was told that it was unlikely I would ever really talk again. I really should make another recording so that you can hear my progress in that area. I will do so this week, and I invite you to tell me what you think. I’ve even started trying to sing again. Granted, I only do this when I’m alone in the car because I really do sound horrible, but I can generate tones. They may not be completely clear, and I may not be able to hold them for very long, and I may have a very limited range at the moment, but I can sing musical notes. I can sing. What will happen when the trach tube is finally removed and I can breathe and support my voice in an unencumbered manner?

And these are just three facets of my recovery. I have been told that I must prepare myself for my new limitations, that I must accept them and move on and learn how to live with them. That I must adapt to function with parts of my being missing.

Make me, motherfucker.

Today, I am strong.

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

So say we all.

]]> http://www.cancercanbiteme.com/2009/08/02/day-seventy-four/feed/ 6 Day Seventy-Three; or, The Return http://www.cancercanbiteme.com/2009/08/01/day-seventy-three-or-the-return/?utm_source=rss&utm_medium=rss&utm_campaign=day-seventy-three-or-the-return http://www.cancercanbiteme.com/2009/08/01/day-seventy-three-or-the-return/#comments Sat, 01 Aug 2009 22:19:10 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=325 Good afternoon, dear reader. First, let me pray your forgiveness for my long absence. Upon my last appearance, I had the best of intentions to return to writing faithfully and regularly. However, the side effects of which I briefly wrote have continued and are making even the most basic tasks overwhelming at times.

Let me begin by recalling for you the major events of the past few weeks.

I have finished my chemotherapy sessions; I have one appointment remaining with my chemotherapy oncologist remaining – scheduled for next Tuesday – during which I assume we will discuss the strategy for recurring evaluations. It is my assumption that I’ll be required to get a CT scan or PET scan every six months or so, but that is pure speculation on my part.

I have one week of radiation therapy remaining. Actually, I have five sessions remaining; so, assuming that all goes as planned and there are no interruptions, I will finish with radiation therapy on Friday. I have definitely grown to respect my radiation oncologist a great deal. In addition to being a most competent and insightful practitioner of his craft, he is also one of those physicians who refuses to treat patients as though they are incapable of understanding what is happening to their bodies. When we discuss my condition, therapy, or prognosis, he does not shy away from technical explanations of whatever is occurring; in the event a term is unfamiliar to me, he defines it and then continues his explanation. It’s very refreshing to be treated by a doctor who doesn’t treat you like an invalid.

Given that he is such a physician, I have been repeatedly surprised by how frequently he has been surprised by aspects of my convalescence. The most recent of these surprises was on Wednesday of last week. While performing his weekly examination, he made the following observation, “You have more tongue than you did a month ago.” He reminded me of a previous conversation we had in which he informed me that there are two parts of the human body that are capable of regeneration after injury – the liver and the tongue. I had been aware that this was the case with the liver, but I had never heard that about the tongue. So as it turns out, my tongue has begun regenerating, and it is doing so at a faster rate than my doctor has seen before. I am not allowing myself to get my hopes up, but on some level I do recognize that it would be fantastic to regrow my tongue completely over the next five to ten years.

As for the less pleasant parts of the past few weeks, the major contributing factor is the side effects hell in which I continue to languish. I am anxiously anticipating the day when the pain caused by my treatments begins to fade, but that day has not yet come. My pain levels have continued to increase over the past month to the point that I have been given more and stronger pain medications. I am currently wearing a Fentanyl patch that delivers 75 mcg/hr and taking 1 mL of liquid morphine sulfate every two to three hours. In combination, these do help ease the pain, but they also greatly contribute to fatigue and the inability to concentrate. Further, I am not looking forward to the weaning process for either of these medications. Though I do look forward to the time when I no longer need them, stepping them down gradually will probably be a frustrating experience. However, I suppose such an experience will be better than a heart attack.

Other serious complications include a very annoying combination of congestion, infection, and cough that will not go away. For the past week, I have felt a constant lump in my throat just above my trach tube. For the same duration, I have been coughing almost uncontrollably at times; these coughs often produce wads of phlegm that could be mistaken for small woodland creatures without too much difficulty. I pestered the clinic staff about the situation until they agreed to run a culture – actually, they first asked if I could produce a sample for them to test; I simply removed the capped cannula from my trach tube (in doing so, allowing direct access to my lungs through the hole in my throat) and shot a small squirrel into the specimen cup they proffered – on a sample; when the results finally came back, I was told that “they [were] ok.” I asked for clarification on the matter and received none; so I’ll wait until Monday and then ask the doctor. Until then, since the sample I produced at the clinic was not my best work by far, I have taken it upon myself to gather other key samples through the weekend and take them in with me as evidence of the truly outstanding nature of this congestion.

Of course I agree with what you’re thinking right now. It is indeed disgusting for a patient to collect his own phlegm samples and store them in Ziploc bags; but what choice do I have, really? While there was a hint of the green color that so often indicates infection in the sample I provided for analysis, that one sample truly did fall short of the multicolored, variably textured offerings that I spend most nights repeatedly coughing up.

OK, fine, enough of that. I’ll move on to something else.

In other side effects, my neck is rather displeased that treatment is still underway. The skin is quite tender and mottled from radiation burns. Also, the trach collar has begun to chafe. I’ve found a relatively effective combination of ointments that help to ameliorate the condition, but nothing will be completely effective until I stop sticking my head in a microwave every morning.

But all of these side effects I’ve described are physical. There are definitely mental/emotional ones as well. I’ve been (increasingly) depressed over the past few weeks because of how difficult it is for me to be out and about. I know that Adrianne would like me to be more social – and I have encouraged her to remain social and go out without me (because, honestly, I’m basically just sleeping anyway) – since she often feels guilty when she goes out without me; and, truth be told, I would like to be more social myself. However, right now I’m no fun to be near. Between the violent coughing, the weakness, the fatigue, and the constant ache, it requires so much effort to be pleasant and social that I can’t maintain the facade as well as I’d like. So I don’t go out. Which, in the end, has gotten me down. I’ve occupied my time with all manner of lazy pursuits – naps, television, a wide variety of films – but, as you may have noticed, dear reader, I have not of late even had the emotional energy to write. I have found some small modicum of satisfaction in my continued efforts to be productive at work, but by the time the workday is over, I am usually in need of a nap. When I wake, I “eat” dinner and take some more medication – which makes me sleepy – and resume my laziness. As you may have noticed by my tone, I feel rather guilty for it, too.

I have tried on some level to convince myself that I have nothing for which to feel guilty, that this recovery process entitles me to a few weeks of laziness and antisocial behavior; but I miss being social. I miss spending time with family and friends.

At this point, I feel as though I am beginning to babble. So, I shall sign off for now. I promise to try to write again tomorrow. Any words of encouragement would be most dearly appreciated.

Until then, my friends, take care of each other.

Namaste.

]]> http://www.cancercanbiteme.com/2009/08/01/day-seventy-three-or-the-return/feed/ 3 Day Sixty-One; or, A Brief Brief http://www.cancercanbiteme.com/2009/07/20/day-sixty-one-or-a-brief-brief/?utm_source=rss&utm_medium=rss&utm_campaign=day-sixty-one-or-a-brief-brief http://www.cancercanbiteme.com/2009/07/20/day-sixty-one-or-a-brief-brief/#comments Tue, 21 Jul 2009 03:54:26 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=319 Good evening, dear reader. Please allow me to begin by apologizing for my long absence. As I will relate over the next couple of days, there have been a number of reasons that I have been unable to post anything for the past couple of weeks. The most pressing of those reasons was physical; I have been awash in the rather unpleasant sea of side effects from radiation and chemotherapy of late. This was so much the case last week that I was placed on 96 hours worth of bed rest by my radiation oncologist. Normally, I am the type of person who will do something while confined to the bed – read, write, be thankful for the invention of notebook computers, etc. This time, I slept. A lot. Huge swaths of time simply do not exist in my memory. As I recall, I had just returned home from my morning radiation session on Wednesday of last week – I had already requested the day off from work since I recognized that I was becoming overtired easily; I thought I could use a day to myself – when I lay down to rest for a few minutes. When I opened my eyes, it was about midnight – over fifteen hours later. I spent the next few days in bed and finally began to catch up on some much needed sleep.

At this moment, in fact, my eyes are begging me to permit them close. Since I am also having trouble typing, I believe that this is a solid recommendation. Please know, dear reader, that I am still alive, still crafting contributions to this blog, and still searching for that silver lining in the thunderclouds that are rediation and chemotherapy treatments. I will return tomorrow with much more detail.

Until then, take care of each other.

]]> http://www.cancercanbiteme.com/2009/07/20/day-sixty-one-or-a-brief-brief/feed/ 2 Day Forty-Nine http://www.cancercanbiteme.com/2009/07/08/day-forty-nine/?utm_source=rss&utm_medium=rss&utm_campaign=day-forty-nine http://www.cancercanbiteme.com/2009/07/08/day-forty-nine/#comments Thu, 09 Jul 2009 03:16:47 +0000 PaduanBenedick http://cancercanbiteme.wordpress.com/?p=311 Good evening, dear reader. Today struck me like the opening phrases of A Tale of Two Cities, which is to say that there were high points and low points. Not unlike any other day, I suppose; yet somehow this one managed to be rather taxing. I would like to thank those readers who offered help, advice, and encouragement in dealing with all the side effects that have waylaid me over the past week. Your support, your thoughts, and your kind words are all truly invaluable.

To clarify a set of details from yesterday – there were several concerned comments – the medication that I have been taking that contains acetaminophen is a concentrated blend of that painkiller and hydrocodone (Lortab). Each 15mL (1 Tablespoon) dose contains 7.5mg of hydrocodone and 500mg of acetaminophen. The prescribed dosage for me is 30mL every four hours; so, doing the math, that works out to 5000mg of acetaminophen per day (assuming I sleep at least a bit and force myself to forgo that sixth dose, which I try to do). Yeah, that’s a lot. Last week was when I realized just how much I was taking; I brought the whole thing to my radiation oncologist’s attention then and told him that I was hesitant about that much daily use of the drug. It was during that visit that I was prescribed the Fentanyl patch; he did so at the lowest dose possible (25mcg/hr) to test both my reaction and the drug’s effectiveness. However, he also instructed me to continue taking the Lortab at the same dosage for the time being.

As of today, my dosage of the Fentanyl has been increased to 50mcg/hr. I haven’t yet noticed a real difference, but the pharmaceutical documentation seems to indicate (assuming I’m reading it correctly) that the drug takes 24 to 48 hours to saturate one’s system; so perhaps I will notice something at the higher dose tomorrow. This still doesn’t address my concern about possible damage to my liver, but once we find a level of this new medication that remains effective, I’ll bring it up again and see if we can’t reduce the dosage or replace the Lortab completely with some alternative medication that is less risky. I like my liver; he’s always been good to me (though I suppose I can’t say the same is true in reverse – sorry, Liver), and I’d rather like to keep him. Yes, I just anthropomorphized my liver. His name is Kevin. What?

Work today passed in a busy blur. I spent much of the day working with colleague on the creation of some video materials; I’ll finish filming the first set tomorrow and then spend a couple of days editing and encoding. This will be one of the more enjoyable projects that I’ve had the opportunity to manage since I returned to the office. I had actually begun planning of the project a month or so before I went into the hospital; of course, according to the original plans, I was to spend at least part of the time in front of the camera instead of being always behind it. For now, however, the plans must change. Give me six to nine months, and then we’ll see if I can’t change things up a bit. In all, I’m satisfied with my current role, so I won’t complain.

In retrospect, perhaps the best of times, worst of times comparison was a bit melodramatic and/or all in my head. Maybe it’s the higher dosage of medication; I’m off somehow and haven’t yet realized it. I’m not sure. Perhaps there will be more clarity tomorrow.

Until then, take care of each other.

Peace be with you.

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