Good evening, dear reader. It’s been a busy weekend, so I have a lot to share. Additionally, since it has now been more than a month since I returned home, I think that this would be a good opportunity to provide a short photo retrospective of the changes over the past few months.
Let me tell you about my weekend first. As I mentioned, my parents came to town for a visit. It was wonderful to see them again; adding their support to the daily and breathtaking love that I receive from Adrianne is wonderful for the recovery process – so much so, in fact, that I’ve yet to experience any real side effects from this most recent round of chemotherapy. But that’s jumping ahead of myself, so let me back up to Friday afternoon, shortly after my last post.
After my chemotherapy and radiation treatments on Friday, Adrianne, The Boy, my parents, and I did go to the theatre. I found myself even more profoundly moved the second time I saw the show. Part of that reaction, I’m sure, was the company. For those of you who are unfamiliar with the musical Working, there is a deeply moving number near the end of the show about the relationships of fathers and sons. My father was sitting to my left; my (almost) step-son was sitting behind me. Suddenly the context of the song hit me; I was filled with both a profound joy and a profound feeling of responsibility to be both the best father and the best son that I can be.
The performance itself was miraculous. I was so impressed as I watched this cadre of friends (so many of whom I consider family) who had – over the previous week – taken a “ready to open” show and made it their own and turned it into something truly remarkable. It is one of those mysteries of live theatre how a show grows from the script and the score into the energy on stage. When a cast makes every element of their show their own, that is theatre magic; nothing less happened with this show. More than once I was moved to tears. Then again, I’m a weeper. I had started the day watching For Love of the Game, the third film in the Kevin Costner baseball trilogy; yeah, even that one can make me cry1. So, it’d been an emotional day anyway. I guess I’ve just had a lot on my mind the past few weeks.
Both Friday and Saturday, there were explorations of various culinary establishments around town – including an early Fathers’ Day dinner for my dad on Saturday evening. On each of these forays, I experimented a bit further with returning to real food. At this point, I’ve tried a half down different kinds of soups, all of which I’ve managed to eat, admittedly with varying degrees of success. It is easiest, as you may imagine, for me to handle the creamy soups. Part of tonight’s dinner, for example, was a portobello soup (quite delicious, actually) that was thick and rich, but not chunky, so it was very manageable. With all these soups – broccoli cheese, French onion, tomato basil (I was expecting more of a bisque here; it turned out to have vegetable chunks), fire roasted tortilla (way too chunky, but wonderfully strong cumin flavor), and the portobello – I’ve been pleasantly surprised with how much I am still able to taste. In fact, there are some flavors that seem more potent now. Perhaps it has more to do with the fact that I really haven’t tasted much of anything in the past six weeks than with the changes in my anatomy, but spicy flavors seem much more potent now. The cumin flavor of the tortilla soup was almost uncomfortably potent. I added a bit of hot sauce (Texas Pete, this time) to the mushroom soup this evening; the result was far spicier than I anticipated based on the amount that I used.
I’ve also done some experimenting with beverages over the past couple of days. Lemonade and strawberry lemonade were successfully tested, though the results were not entirely what I expected. With both of these drinks, I didn’t taste much at all until after I swallowed, at which point I could distinguish the flavors as more of an aftertaste. Additionally, the acidity was a bit uncomfortable at first, but I think I can get used to that. I’ve tried teas of various kinds, and I am able to discern differences in flavors between them, which is nice to know. Also, life has begun to return to normal as I now begin the day with a cup of coffee. The pot that I brewed this morning was rich and strong and delicious. I know that I was told that radiation therapy would wipe out my sense of taste for about three months, but since I’ve ignored the odds on so many other aspects of this process, I’d love to dodge that bullet as well.
Speaking of the side effects of treatments, at this moment they seem almost negligible. I haven’t been nauseated at all today – though Adrianne has made thoroughly sure that I’ve been taking my ginger supplement every day, so I’m sure that has helped – and the rash from the Erbitux is clearing up nicely. As part of the photo retrospective, I’ll include some pragmatic detail on what I’ve done for anyone among the readership who is dealing with Erbitux treatment. I hope that it helps.
So, shall we take a look at some pictures? Let’s begin with an older one. This is a simple candid shot from several months ago.
Ignorance is Bliss
This is a photo I took from my laptop as I was testing out all the features. I decided to include it as a basis of comparison for what’s coming up next.
Waiting is Hell
This picture was taken by Adrianne. It was taken at Vanderbilt Medical Center sometime between my two surgeries. The tube in my nose will eventually be replaced by the PEG tube to my stomach. Have you ever eaten through your nose? Absolutely not the most comfortable sensation in the universe. You can feel the combination of chill and pressure as the liquid drains from your nasal cavity down the back of your throat. I remember that once – in the middle of the night – I awoke disoriented and began removing the tube without fully realizing what I was attempting. I only stopped when I felt the far end of the tube leave my stomach and end up somewhere near the bottom of my esophagus. Delightful combination of embarrassing and uncomfortable, that one. So, I started pushing the damn thing back in and forced myself to not to vomit. Fortunately, I got it back into place. I told one of the nurses about the incident, some x-rays were taken, and everything seemed to be in order the next day. Awesome.
This was taken a day or two after the last. I’m a little closer to being prepared for my second, larger surgery. Trying to keep the spirits up knowing what coming and all that. I knew at this point that I would be losing the majority of my tongue (I didn’t know that I’d be losing it all) and that I would have a great deal of adjustment to life after the surgery. I believe that this picture was taken the same day that I made a recording for Adrianne. There were a couple of reasons for that, I suppose. First, these would be the last words that would be recorded by me with any tongue at all. Granted, after the first surgery, I wasn’t able to speak all that clearly. I probably should compare that recording to what I sound like now. Or maybe not. I’m not sure I want to know; I’d rather focus on relearing than on what I’ve lost. The second reason was that uncomfortable “in-the-event-this-whole-thing-goes-horribly” kind of thing. But, there’s no need to think of that now.
A little warning – the next picture is not completely without blood.
Post-Surgery Unpleasantries
This is – obviously – the fairly immediate aftermath of the major surgery. You can see the vertical split from my lip that extends down past my chin. It actually extends to meet the incision you can’t see, which runs from behind my left ear almost to my right, as though I’d been targeted for a particularly effective garroting in a dark film noir. That look in my eyes? Disorientation and drugs, most likely. The swelling wasn’t painful at this point because there was so much bruising to the nerves; I was more numb than anything.
Here you can see the effects of Erbitux on the unprepared subject. The rash covered most of my face; my skin was scaly and flaking. It was neither the most pleasant nor unpleasant experience of my life, but I wouldn’t recommend it to anyone who doesn’t really need to go though it. Fortunately, my chemotherapy oncologist threw another medication my way and recommended some modifications to my regimen.
And here’s the result – still some redness, but no scales or cracking, and much less irritation, discomfort, and pain. As promised – the pragmatic advice for anyone going through Erbitux treatments. The medication order by the doctor was clindamycin phosphate topical solution. I’ve been using that twice a day. Add in some generic anti-acne face wash and an overnight moisturizer treatment with Aquaphor (a product from Eucerin) and I’m much more comfortable in my own skin at the moment.
I’m sure there will be more pictures as we continue the journey together, dear reader. Eventually, I’ll put together a photo gallery that tells far more of the story than these six images can.
There will also be more audio coming in the near future. I think I’ve made a lot of progress with relearning how to vocalize. There are, of course, still some troublesome sounds – specifically, the voiced/voiceless pairing of g/k – that I have not yet determined how to recreate. These may have to wait a few more months until I am able to get a dental prosthesis that will reshape the upper palate of my mouth and make the creation of those particular sounds easier to achieve. This is one area where I am not willing to compromise. I will return to the stage one day, but I’ll be prepared to do so; I’ve given myself eighteen months to regain the ability to be understood. I think that’s a reasonable expectation (especially since it completely defies the conventional wisdom of my surgical team).
This thought brings me to mention something about which I want to write in the near future. I think I’m beginning to understand another element of my recovery – my own motivational tool, so to speak – that is proving essential. You may be surprised by what it is. I simply call it ignorance. I choose to remain ignorant of my “limitations.” I ignore them. They do not exist for me. I’ll tell you more about it soon.
Until next time, take care of each other.
Sanity may be madness but the maddest of all is to see life as it is and not as it should be.
- Don Quixote
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1 – Ok, so – according to family legend – I had to be carried out of our screening of E.T. back in 1982 because I was weeping so heavily. What can I say? Perhaps that’s part of what appeals to me about being a storyteller; I love to make emotional connections that are so intense.
