Complicated

These special ladies are my wise, wacky, wonderful neighbors Carol, Sandra, Jill, Mary and MJ and we enjoyed a fun night out last Friday. I'd love to give you the details...but if I do they might have to kill me!


Can't believe it's been over 2 weeks since I last updated. I'd like to think it's because I have the energy to keep busy and therefore lose track of time, especially because that (the energy level that is) seems to be changing slightly as I get further into my radiation treatment. I've had 8 so far so by Tuesday I'll be a third of the way done (there will be 30 total). It's been relatively uneventful so far; I go in to Stony Brook at 7:45 a.m. and by a little after 8:00 I'm on my way to work. The techs are really kind (of course, they're not Peter, but then again...who is?) and very accommodating to my schedule. Radiation Oncology at Stony Brook has their own parking lot, so when I pull up in the morning I turn my keys over to valet who then parks my car...10 feet away. Seriously. It makes me wonder - just how weak am I going to get??? None of the other patients look like they are in terrible shape (well, except for that one lady I wrote about in the last blog post who had a lot more going on than just radiation) so I'm going to assume they've gotten some significant endowments for the department!


Side effects so far have been minimal. My face is just starting to get a little pink (and I have to slather it with Aloe and Aquafor each night - love the greasy pillowcase in the morning). The worst side effect is the loss of taste -it's like I'm eating at PJ Bland's every time I have a meal. And because I haven't forgotten what food tastes like, I look forward to my food choice each time I make one (Yum...penne alla vodka!) only to be disappointed when it "tastes" just like everything else (i.e. cardboard). Oh, every once in awhile I'll be surprised (I did taste the lemon when I had Chicken Francaise Friday night) but most of the time I'm eating for nourishment vs. pleasure. On the upside, it's easier to eat healthier if it all tastes the same - why choose chocolate over veggies if it all tastes the same? (Because I WANT chocolate!)

Of course, as everybody knows by now, I can't go through any kind of treatment without some complications. This time it was a trip to the emergency room on Wednesday for something that may or not be treatment related. Warren, Taryn, Ian and I had gone to Yankee Stadium for the first time to see the game (we were in the Legends Suite, courtesy of my boss, and without digressing too far here...it was like being at Disney, every detail perfectly managed with the intent to spoil you rotten). On the way home, I started to feel a little stomach ache and ended up being up all night with abdominal pain on a pain level of about 8 (out of 10). I spent most of the day in the emergency room, ending up with no real diagnosis (ultrasound and CT scan didn't really show anything unusual) except a theory that it is somehow gall bladder related (my pain had diminished by the time I left, but I had only been given some fluids and some Pepcid). In any case, I am fine...for now. We'll see what develops.


I do have some good news. My recent PET Scan came back with no evidence of disease, including in the resected jaw. So at least I can breathe somewhat easier for a couple of months, at least until the next surveillance study. One further complication - my oncologist is leaving the hospital to move to Ohio and get married. (I must be a terrible patient, my last oncologist also left me...twice!) She is turning me over to one of her colleagues, who I will see in early June (because my case is "complicated" as she described it, she wants me to see this particular doctor rather than one of the other medical oncologists). So I will be faced (once again) with telling my increasingly lengthy medical history (although I suppose that's a good thing, wouldn't want that to end, really, cause we know what that means!).


So, it's time for the creepy part of my story, one I relate with some trepidation, because it's pretty gross, but this IS a "warts and all" blog so be prepared to skip this part if you've got a weak stomach (and read it if you've got a warped sense of humor). After the first week of radiation, I saw the Radiation Oncologist for a checkup. He examined my neck, my face and the inside of my mouth at which point he let out a little laugh and motioned to the nurse to "come on over and see this." Both of them were "hmmming" and "oh-mying" so of course I had to ask what was up. It turns out that the flap covering my jaw from inside my mouth, created from skin taken from my leg, is...growing hair. (Yep, it's true, I checked it out myself). Apparently, hair follicles and all are included with the graft (and believe me, the irony of having hair missing on my head, but having it grow in my oral cavity is not lost on me). I am, however, assured by the oncologist that the radiation will destroy the follicles so this is a temporary condition (one I can't even feel, to tell the truth). Just when I think this whole ordeal can't get any weirder...


Some other good news (we all need it after that last bit of sharing) - Taryn and Ian have made their college commitments. Taryn will be attending the University of Maryland (no surprise there, this has been her top choice for awhile now) and Ian will be attending the University of Delaware (he has been accepted to their Honors program). Both attended Open Houses last weekend that kind of confirmed their interest in each of the schools. It is hard to believe that in only 4 more months they'll both be college freshmen (and we'll have a very empty house). Of course, Warren and I are REALLY looking forward to funding 3 college educations at the same time!


I am still struggling to accept my appearance, which I know is still going to undergo further changes. I've had no shortage of pep talks from my family, friends and colleagues ("You look great!") and I realize I should just be grateful I'm alive instead of whining about something so superficial. But I can't help being at least a little sorrowful about the cards I've been dealt (who doesn't want to look pretty?) and I am fearful of some of the possible implications of this disfigurement (who would hire me looking like this?). It is particularly disturbing to see photographs of myself - swollen, slack-jawed, misshapen and (soon-to-be) discolored. I suppose, perhaps, that it might be easier to deal with this issue if there weren't so many others (perpetually dry mouth, loss of taste, inability to exercise until my leg fully heals, unable to chew most foods, bald spot on my head, etc.) but boy, what a challenge to stay positive when I see the results of this cancer graphically EVERY DAY.


One final thought (because this is a loooong blog post - I really must update more often): my friend Danny B. is having surgery Tuesday, so I'd like to give him a shout out to "do good, and get well soon, we are all rooting for you!"


Blessings and Love to All!