Or, It’s Good To Have Goals.
I love the site Indexed. Basically, it’s a daily web-comic of sorts that uses Venn diagrams and graphs for humorous purposes. Today’s entry gives me a goal; it’s entitled, “Why Some Actors Do Indie Films for Cheap”
Why Some Actors Do Indie Films for Cheap
A not unreasonable goal for four or five years down the road, right? What do you think?
Good evening, dear reader. I hope you are well this evening. Surprisingly, I am doing much better that I had been predicting for myself this time yesterday. I had my first official radiation treatment this morning (ah, yes, one down and thirty-four to go), and I can see in the distance the oncoming freight train of side effects; but for the moment, they are but anticipatory glimmers of future discomfort.
Most noticeable is the odd sensation in my throat. It is not pain, but rather warmth. I suppose that makes a rather remarkable amount of sense since – oh, yeah – the surrounding tissue was nuked with radiation this morning. There’s that sensation of warmth after one goes for a nice jog – are you familiar with it? This sensation is not dissimilar; however, it is not accompanied by pronounced sweating and panting. I can imagine that, over the next few weeks, this will warmth grow to be particularly uncomfortable – my chemotherapy oncologist has actually mentioned that it is occasionally necessary to delay treatment for some patients undergoing treatments similar to mine due to throat irritation – but I hope that it does not interfere with my treatment. Since I now have a definitive endpoint for one portion of my therapy (yes, that would be July 27th – no, of course I’m not counting down; why do you ask?), I would love to hold to that timeline and put this behind me as quickly as possible. I intend to push for some hint as to the endpoint of my chemotherapy treatment this Friday; two goals are better than one at this point.
Throughout the day, as I sat at my desk I would notice little things about how I was feeling. The sensation in my throat was the most pronounced; though, to be honest, it has almost completely subsided at this point. I think that’s a good sign. The other noticable condition from today was a more pronounced feeling of fatigue than I had been experiencing. Of course, here’s the rub – as I know that I inherited from a branch not too far removed in my family tree an almost paranoid hypochondria (though it disguises itself well as self-educated inquiry), I wonder if these feelings are merely manifestations of what my mind believes I should be feeling. Are these just psychosomatic exaggerations of things I only think I feel? I know that side effects like these will eventually manifest. Is it too soon? I, of course, do not have the answer to that question.
There are side effects that I absolutely do not question – though most of these are related to the chemotherapy (as, for example, Adrianne now tells me that, were someone without knowledge of my current situation to look at my back, he would likely think that I have chicken pox). What of the others? While I don’t want to ignore them, I don’t want to be ruled by them, either. If I think of myself as fatigued, will it make me more so? If I concentrate on discomforts, will I be able to work through them? It would be nice to have the ability to experience sensations of the future for about thirty seconds – just long enough so that I would know the exact level of discomfort/pain that I can anticipate. As with so many things, I can easily envision something far worse than the side effects are likely to be.
I suppose that much of this is the reverse of something that I have come to view as a strength during this process. Tomorrow, I shall write about why I think I have been more successful than my physicians anticipated with regards to speech and movement. I believe these are really quite related.
Until then, my friends, take care of each other.
May the wind be always at your back.
Well, one radiation treatment down, thirty-four to go. More on that later this evening; however, radiation therapy is not why I’m sending this little post your way, dear reader.
Following this morning’s treatment, on the way to the office, I received a phone call from my chemotherapy clinic. My chemotherapist wanted to inform me that the results of my PET scan were back; there is no indication of any metastasis of my cancer.
I find this quite refreshing. I shall celebrate by sitting quietly at my desk and working. Please feel free to celebrate in your own way.
Until next time, take care of each other.
Blessed be.
Good evening, dear reader. I do trust this evening finds you well; I, myself, am better than I expected to be today, quite honestly. There was nothing too eventful today to report – the day began with the trip to my radiation clinic for the final set of scans in preparation for the beginning of treatment tomorrow morning. All in all, I’m thinking my time in radiation – though of shorter duration than either chemotherapy or physical therapy – will be by far the most uncomfortable of my treatments. Do you happen to recall the white mesh mold of my upper body that was created a week-and-a-half or so ago? Well, as it happens, every time I go in for radiation therapy, I will be refitted with that particular joy and bolted to the table. I hope to have some images for you in the next couple of days so that you can truly realize the level of comfort associated with this treatment. Trust me, it’s a joy.
Fortunately, the scans were over (relatively) quickly, and I made my way to the office. Work feels different now, for obvious reasons, I suppose. On some level, it does bother me that I am much less social that I used to be in the office. As with any similar development, there is not just one reason for the shift. It doesn’t help that I just don’t feel like myself at the moment (nor am I likely to for a while); additionally, the side effects of the chemotherapy are making me very self-conscious.
Me, on a good day
The acne-like rash that is a side effect of Erbitux is worse today than yesterday; the skin from my chin to forehead – in a clear (pardon the pun), discernible path – is very dry and cracked. And yes, at the risk of providing too much detail, occasional bleeding follows. However, if these effects follows the same pattern as last week, they should clear a bit by the weekend. Of course, then the cycle will start again with the next treatment on Friday. I have a few different skin care products to test; hopefully I can find something that keeps me from too closely resembling David Lynch’s Baron Vladimir Harkonnen. Until then, I suppose I’ll just worry about it a bit too much.
Additionally, there’s a new side effect that has shown up over the past thirty-six hours that I find interesting – sensitive scalp. I first noticed it when I was combing my hair this morning. The only reason this strikes me as curious is because it hasn’t been mentioned as a possibility in any of my consultations. Don’t get me wrong; I’m not concerned or worried, just curious. It has occurred to me that this may be a variation of one of the side effects of which I was forewarned; during my last chemotherapy treatment, one of the nurses informed me that I might experience numbness or tingling in my fingertips; this kind of sensitivity wouldn’t seem dissimilar to the sensations that I’m experiencing.
Those are the highlights for the day. I’ve got quite a few more interesting ideas that I’m looking forward to sharing with you this week, dear reader. Some are medical thoughts; some are simply more philosophical ramblings. I hope you’ll stick around for the conversation. And, please, at any time, feel free to chime in.
Until next time, take care of each other.
Living should be perpetual and universal benediction.
Why Lazarus Laughed by Wei Wu Wei
Good evening, dear reader. Thank you for joining me again. I promise you a brief entry this evening, as I feel like hell. There is a peculiar flavor of malaise that follows chemotherapy, or so it would seem. This morning, I awoke feeling and looking much like a bubonic plague infected Fraggle.
The rash that is one of the side effects of the Erbitux has spread a bit across my face; it is truly lovely to behold. There is much splotchiness and discoloration, along with a stretched and dry feeling that is rather uncomfortable. Also, I was visited today by the goddess of nausea, charmer that she is, immediately after breakfast. As a result, I have spent most of the day in bed. It’s probably time for my third meal, but I’m not particularly looking forward to it. However, because she is absolutely wonderful, Adrianne made a lovely ginger tea that has proven to be quite helpful; so I suppose I shall start with a bit of that.
I haven’t had the most productive day of my life, but I’m trying to forgive myself for that one. I’ve taken a few notes down – story ideas mostly, snippets of dialogue – but I’ve done nothing with them. I also tried a bit more troubleshooting of my new WordPress theme for the blog. Still to no avail there – obviously, since you’re still looking at the same design.
Hopefully, all will be better in the morning. I have a 7:40 am appointment at the radiation clinic. My understanding had been that I would begin treatment tomorrow; however, when I spoke with the staff there on Friday, they informed me that they wish to have some x-rays and other scans taken tomorrow instead. They plan to begin actual treatment on Tuesday. C’est la vie. They’re the experts; I’ll just do as I’m told, I suppose.
I find myself wondering how much worse this is going to get. If this is as bad as it becomes, I’ll have no real problems. Sure, I’m uncomfortable at the moment, but I can deal with this level of discomfort. The “sunburn” from the radiation should be amusing. We’ll just have to play it by ear.
I find myself trying not to worry about the results of the PET scan from Friday. It was taken because I couldn’t remember any other scans that checked below my clavicles for any cancerous growths. Since my diagnosis has been only locally advanced, I suppose it seemed unnecessary at the time to those first physicians. While I doubt that anything did spread that far from the point of origin, it would be a nice touch to receive confirmation of that tomorrow. As always, I’ll keep you informed.
So how has your day been, my friend? I do hope all is well with you. I apologize for the lack of any interesting conversation this evening; however, brevity being the soul of wit, I suppose I can count that in my favor this one time.
Until next time, take care of each other.
Namaste.
Or, Why Lazy Saturdays Aren’t Quite What They Used To Be.
Yes, dear reader, this has been a lazy day. I have spent most of it in front of the computer in a trial-and-error experiment to build a new theme for this blog. Suffice it to say, something is rotten in the kingdom of Denmark. Or something melodramatic like that. I keep thinking that I have all the key components in place, and then I get a blank screen. Not exactly encouraging; but, at least I’m learning, albeit slowly.
However, the day hasn’t been a total loss by any means. Adrianne and I had spent some nice, relaxing one-on-one time where we shared some thoughts and fears. It was something that I think we’d both been wanting for quite a while, yet we found it hard to approach. I know that – for me – sitting in front of a keyboard provides enough of a perception of distance that it is easier for me to communicate. Plus, here I have the advantage of editing myself. In the world of the speaking, when I try to share those things that make me afraid, too often my words fail me, and I say the wrong thing. Sometimes it is hurtful; and for those moments, my dearest Adrianne, I do deeply apologize. She swears I am not a burden, and yet often I feel like a needy layabout who requires too much attention and chauffeuring. I know that we will work through all these things in time, but the beginning of a voyage is often the most difficult part.
I also had a nice conversation with The Princess today. She has been greatly enjoying her summer vacation and as such has not been home too much. We’ve been working opposite schedules for the past couple of weeks, so it was very good to catch up with her.
Regarding my physical condition, for the most part I feel fine today. I have noticed a little weakness; standing takes more effort that it did yesterday, and I can’t stand quite as long. Walking, too, is more difficult. But there is no nausea, no headache. Those are good signs, at least. There has been an odd metallic taste that has come and gone throughout the day. I’m wondering if it’s related to the Carboplatin, which is platinum based. Not sure.
Yesterday, the dietician from Vanderbilt called to check up on me. Part of our discussion included that I am not regaining any of the weight I lost over the past two or three months. While she seemed to think that my current weight is acceptable (I’ve been hovering just below 10.7 stone), she agreed that regaining some of the 2 stone I’ve lost might not be a bad idea. The solution – I now get seven cans of the vivacious, delectable vanilla-esque yum-yum-good-food per day. Joy. Be still my beating heart. Couldn’t she have just said, “Eat a cheeseburger.” That would have been nice. Or some bacon. Can you put bacon in a blender? Or a juicer? Mmmm, bacon juice.
So that’s about all on the physical front today. I’m craving just about everything, wondering what I can taste, realizing that in a week or two I’ll taste nothing (because of the radiation treatments – the lack of taste will last about three months according to my radiation oncologist), and settling for vanilla dreck and some sips of juice (once I get off my butt and make it, anyway).
How are you today, dear reader? As always, thank you for stopping by. I do wish I had something more interesting to ramble about today, but -alas – I fear I spent most of my creativity points for the week on the Star Trek rant yesterday morning.
Until next time, take care of each other.
Peace be with you.
Good afternoon, dear reader. I decided that a mid-day post was in order. I am sitting in a padded, yet amazingly uncomfortable chair in my chemotherapy treatment clinic. There is an expertly placed IV in my arm. I’ve finished the pre-med load (anti-nausea, steroid, antihistamine, and anti-heartburn) and have moved on to this week’s dose of Erbitux. Coming up next will be my first doses of actual poisons – Carboplatin and Taxotere.
I’m a bit light-headed at the moment from the large dose of antihistamine, but it’s passing fairly quickly. I arrived to chemotherapy almost half an hour late; my PET scan ran much longer than expected. As a result – you guessed it – I’m still hungry. I had planned of having a few minutes between appointments to inject a couple of cans of food, but, alas, it was not meant to be.
I have made an interesting observation today. There are issues with taste and my new tongue. Every time I have any type of IV injection, I can “taste” it. I know that this is a common reaction to injections of regular saline, but it happens to me with just about every medication I am taking. Further, they each have a different taste. Also, how the hell can I differentiate what they taste like? I have no taste buds; however, according to my brain, I am tasting these medications with my flap. The surgical team assured me that there would be little or no innervation into the flap, so movement would be out of the question (though an incredibly remote possibility); taste, on the other hand, shouldn’t even be possible. There are no receptors on the flap that are equipped for that type of sensory input. While I do think it would be fantastic if my brain could be reprogrammed to accept taste data from standard nerve cells that originated in my leg, I’m not sure if that’s medically possible. I can see two possibilities off the top of my head (and with my basic lack of advanced medical training).
I have to go with option one. There are too many counter-indications for the second. The primary counter-indication is that – in a healthy tongue – different flavors are registered by different areas of the tongue’s surface. Sweet, salty, bitter – these sensations all originate from unique lingual areas. This would seem to indicate that there is a degree of specialization with the structure of nerves – unless I’m wrong and the brain is the one doing the interpretation of the signals and choosing the methodology/pattern for doing so.
UNRELATED SIDENOTE: The gentleman next to me was born in April, 1911. It’s official; I am way too young for this shit.
MOVING ON: The second counter-indication is that I cannot taste food at all with my tongue. All the flavors that I can still perceive register along the sides of my mouth and the very back – areas essentially unaffected by the surgery. Maybe I should go the medical school when this is all over. That would be interesting.
When I first arrived here, I met with my oncologist; he had been reviewing my treatment plan and consulting with other oncology specialists through the Sarah Cannon Cancer Network (of which his practice is a part). He pointed out that:
He is concerned about the possibility of stacking side effects on top of each other. He mentioned that it might be a good idea to remove the Taxotere from my treatment plan and to proceed with only the Carboplatin and the Erbitux. I told him that, if he buys my tickets to the fancy medical conference at which he presents his paper on my time and experience as a patient, I have no problem being used as a guinea pig. We agreed to try all three drugs this week and to monitor everything closely; we will revisit the decision weekly prior to my treatments. If any of the side effects become overwhelming, especially after I am two or three weeks into radiation therapy, we may be forced to remove the Taxotere or the Erbitux for the regimen. I would guess that the Erbitux would be the first to go, since I already have visible side effects from it (the doctor and one of the nurse both commented on the rash).
I’ve just been started on my Taxotere. I was offered some “cold gloves” for the duration; I turned them down. Something about typing and the use of fingers. The nurse informed me that a common side effect of Taxotere is tingling or numbness in the fingertips. The gloves are supposed to ameliorate the situation. We’ll see, I suppose. Of course, the joy of them mentioning the tingling and the gloves is that – since I have a relatively powerful imagination – I’ll probably start feeling something soon. Then I’ll spend half an hour arguing myself whether or not the sensations are psychosomatic.
Also on today’s agenda, as I’m sitting here letting snakebite enter my veins1, we are working to complete my FMLA paperwork for the office. I can turn that in on Monday, and everything should be cleared for the duration of my treatments. <sarcasm>May I say again how dearly I love bureaucracy and red tape? I love it immensely. That is all.</sarcasm>
This update easily became longer than I expected, so I’m going to make this the Daily Update for the day. I’ll be back later this evening (probably after the bizarre athletic competition thing) to fill you in on the remains of the day2.
Until then, dear reader, be well. Take care of each other.
May the Force be with you.
_______________
1 – Alright, raise your hand if you got the reference. Of course, now I have the song (Voodoo by Godsmack) stuck in my head. I think that one’s about heroin, not Taxotere, but whatever. My own fault for trying to be descriptive.
2 – Ok, that reference is just too obvious, isn’t it?
So, you know what sucks? I do. Fasting for medical reasons – that’s what sucks. I was told that I am not allowed to have anything to eat or drink prior to my PET scan. Ok, in my case, drink. Ok, inject. Whatever; you get my point. I was told that I can have a little bit of water, but that’s all.
It’s not as though I failed to plan ahead. I had an extra meal last night around 11 pm. I increased my water intake yesterday in the hopes that it would help. No luck. My body has officially become accustomed to the 6 am feeding. What’s wryly amusing to me is that, prior to the surgery, if I ate breakfast at all I didn’t do so until around 9 am. Usually breakfast was a pot of coffee. Yes, you read that correctly. Pot. Not cup. Cups of coffee are for amateurs. Allow me to reinforce this with a semi-visual analogy:
Cup of coffee for breakfast : Ensign Pavel Chekov :: Pot of coffee for breakfast : Captain James T. Kirk
You see, a cup of coffee in the morning makes you good at math. A pot of coffee in the morning makes you good at everything1.
Damn, now I’m really craving coffee. Yep, this sucks.
That is all.
Take care of each other out there.
__________________
1 – Especially if everything includes some combination of ass-kicking, skillful repartee, and green womena.
__________________
a – I know, I know, in Star Trek: The Original Series (TOS), Kirk was never intimate with an Orion woman. The famous scene that the Star Trek dilettantes seem to associate with him is the flashback scene from The Menagerie, Part I#, in which we see Captain Christopher Pike at a banquet where an Orion woman is dancing. So I’m playing to the common misconception. Sue me. Unless, of course, I’m referring to the new film, in which case is was Kirk who was enjoying the company of an Orion woman – or was seduced by her powerful pheromones (assuming we still accept the events of Star Trek: Enterprise as canonical since they would have predated in the timeline the arrival of Nero).
__________________
# – The Original Series, Season 1, Episode 11 – originally aired November 17th, 1966. This was part one of the only two-part episode offered by The Original Series. The flashback scenes used in this episode were taken from footage from the unaired pilot, The Cage. The studio had several issues with this pilot, but liked the concept for the show. Problems included:
That’s it, history lesson concluded. Ok, look, if you’re still reading, look back up at the title of this post. It’s not like I didn’t warn you that this is a slow morning for me. I’m just waiting on the nurse to show up.
Have a good day, dear reader.
Good evening, dear reader. How are you tonight? I must admit, this is not one of my better days. Oh, there’s not really anything wrong, per se, I suppose; today has just left me physically and emotionally drained.
Most of my work day was fine, and I can officially say that I survived my first week back on the job. Yes, I know, tomorrow is Friday; however, as it turns out, because of the byzantine and illogical policies (or demonstrable lack of any established ones) in my office, I will be forced to burn a vacation day every Friday for the duration of my chemotherapy. Nevermind that my job exists primarily on the internet and is accessible from virtually anywhere with a signal – including, but not limited to, the free wireless in the clinic where I receive chemotherapy. So, even though I am in all ways capable of performing my duties while sitting for three hours in a chair receiving chemo, I am not allowed to do so. No real reason was given; I was simply told that it was not allowed. On the bright side, I was granted a modified schedule that will permit my daily radiation treatments without requiring me to burn through yet more leave time. Not quite what I’d consider a wash, but close enough. If you’re interested in more details, let me know; I’ll give the whole story someplace a bit less public.
This evening, Adrianne, The Boy, and I attended Preview Night at a local theatre. Tomorrow is opening night for their production of the musical Working (from the book by Studs Terkel). I was very impressed by the production and would heartily encourage any of my local readers to go see it. It was good to get back into a theatre; it was the first time since I went to the hospital that I’d seen anything. I’m not sure if I mentioned in an earlier entry, but Adrianne and I were two days from opening a play when my physical condition went to hell and I was admitted to Vanderbilt. At that same theatre, we were to perform in Twilight of the Golds, a thought-provoking drama that pressed all the good social commentary buttons – homosexuality, abortion, religion, opera. Unfortunately, I was unable to fulfill that commitment. I still feel guilty about that.
Perhaps that’s one of the factors contributing to my emotional angst this evening. I am, of course, intellectually aware that there will be good and bad days; being stuck in one of the bad ones just brings that home a bit forcefully. Going to the theatre tonight reminded me of something that part of me considers a failure; yes, I know it couldn’t be helped, but part of me thinks I could have fought just a little bit harder and pushed through. It may not be logical, but it’s the way I feel.
The side-effects of chemotherapy – or, rather, the fact that I’m not immune to them – is starting to hit as well. I’m still coughing at night, which means I’m not sleeping as well as I should. The joint pain has diminished, but is still present; I fear it will return with a vengeance next week. Then there’s the newest one. My nurse at the chemotherapy clinic indicated that a rash on the face and chest – not dissimilar in appearance to acne – is a common side-effect of my treatment plan as well. The rash first showed up yesterday. Honestly, that was a little surprising. I had been told that the drugs would work their way out of my body over a 72 to 96 hour period; so the appearance of side-effects after that time frame was unexpected. Anyway, the rash is even more pronounced today; it covers the lower part of my face from chin to nose; fortunately much of this area is still covered by my beard. Yet this brought on the unfortunately inevitable jokes along the lines of, “You’ll lose your beard and break out? You really will look 14 again!” I know that it was meant in jest, with no spiteful intentions; but I already feel ugly enough. This disease has made me feel ugly and poisoned and inadequate1. So to be reminded of it can hurt. Again, I know that’s a silly, juvenile reaction; I know that I’m pandering to my own vanity by indulging in this kind of self-consciousness and those feelings of hurt. I’ll work on it, but this is just one item on a long to-do list for my emotions.
So this evening I am drained. I am tired. And I have a long day tomorrow. First thing in the morning will be the weekly visit from the home health care nurse. Later in the morning, I have a PET scan scheduled. Then in the afternoon, I have chemotherapy. Supposedly, if I can still stand tomorrow evening, Adrianne and I will be visiting some dear friends so that they and Adrianne can yell at the television while a group of burly men all mysteriously missing teeth fight over a frozen cow turd using long sticks and special ice dancing shoes. No doubt I will be asking semi-ridiculous questions throughout. The fun part is that they will be supporting opposing groups of these men; yeah, that should be interesting.
I hope you are well, dear reader. Thank you for continuing to walk with me in this journey. It simply wouldn’t be the same without you.
Until next time, take care of each other.
Slainte mhor agus a huile beannachd duibh.
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1 – Yes, that kind of inadequate. When I work up the nerve, I have some interesting commentary on the ramifications of cancer treatments on intimacy in a relationship. Don’t worry, I’ll post a nice, strong warning at the top of that post.
This quote showed up in my RSS feed reader and I absolutely had to share it. Given everything that I’ve been dealing with lately, these words really speak to me.
Experience is not what happens to you; it is what you do with what happens to you.
- Aldous Huxley
What do you think?
Also, speaking of Aldous Huxley, he and George Orwell both wrote famous (and rightfully so – they’re both brilliant) novels about dystopian futures. The interesting contrast is this – in Orwell’s dystopian future, what we fear has risen up to control us; however, in Huxley’s vision, what we love has coddled us into unquestioning submission.
With everything we see in American society today – rampant consumerism (even in a depression), “reality” television, celebutantes, pain and suffering and love and lust as entertainment – I’m beginning to fear that Huxley was far more prophetic than Orwell. Unfortunately, Huxley’s vision is far more tempting, far more insidious, and far more difficult to escape than that of 1984.
Do you thing I’m wrong?
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