I’m happy to be in the month of May since my treatment ends this month (yeah, the 31st but it’s something). Today I thought I’d chronicle what is becoming a typical weekend day in my life right now.
If I start after midnight I find that I’m up several times for bathroom breaks (too much M.O.M.) as well as to take Benadryl, an anti-nausea med and the all-important pain pills around 4 AM (I tend not to miss my times for those pain pills). Joanne claims I don’t wake her during these nocturnal treks to the outhouse. I wonder. I managed enough sleep and got up at 7:30, took some Carafate (reflux preventer) an anti-nausea pill (the one I forgot to take in the middle of the night) and then some “Viscous Lidocaine” to numb my throat so I could eat something. I gave cereal a shot with limited success and ended up with good old Ensure. I read the paper for about an hour and my eyes glazed over and I went back to bed. Got up after an hour, took a shower and slathered on some skin cream to counter my gradually worsening skin around the radiated area as well as this persistent rash the cause of which is still unknown. Brushed my teeth (should have done that earlier – need to keep my teeth healthy) and on to reading email and more of the paper.
My band has a gig this morning so Joanne and I went to the town park (I was dressed like a sun protected dork) to visit them for a while. Upon returning I had to again contemplate what I could eat. I went with egg salad and another Ensure and a handful of peanut brittle…….. (yeah, just seeing if you’re paying attention). It took its painful time getting down but another meal is complete. Nap time again. Let’s see…..”you know you’re getting old when eating wears you out?" After nappy time I took my Thrush meds (one more of those to go) did some ironing and sat around and watched a hockey game. Oh…time for another anti-nausea pill too (3 per day). Drinking sips of water all day.
In a few hours I have to contemplate my next gourmet meal, take some more pain meds, drink some more Carafate, eat, shower, put more cream on my burns and finish the day with a good flossing, brushing, fluoride coating, and saline, baking soda rinse.
A note about pain: My thrush seems to be gone so all the pain is in my throat now. The pain is mostly during use (swallowing, talking, singing opera etc.). When my throat is relaxed, there is much less pain which I suppose is why I can sleep. However, tomorrow I’ll be letting RadDoc know I want a feeding tube – called a PEG.
Hey Ben-
ReplyDeleteI haven't contacted you since your diagnosis. I didn't know what to say. I've been reading your blog (and just figured out how to become an official 'follower'). Your attitude is beautiful. It's a gift. You're truly an oracle and it shows through this blog. I've seen so many patients in your situation, and I know in my heart of hearts that you're going to come out on top because of your attitude, which is half the battle (really). Our energy systems are so important when it comes to healing and yours is clearly in a more enlightened position than most.
I just wanted to say that I have thought of you and have said prayers for you.
~Leslie