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!

Ride My See-Saw

No, I haven't taken up fencing and Spiderman does not have me ensnared in his web - this is the plastic mesh contraption they use to hold my head in place for radiation.

It's hard to see but there are honeycomb openings all over the mask so that it is quite easy to breathe. What you are seeing is part of the simulation process that took place on Monday and again on Friday (radiation doesn't actually start until Tuesday the 14th). The mask started out as a piece of wet mesh - it was like draping a damp towel over my face, then pressing it so that it molded to my features (and I can see why they ask beforehand whether you are claustrophobic - again, it's easy to breathe, but one could easily forget that given the sensations). It hardens within minutes and at that point they lock it into place in order to begin creating the specific settings for radiation. In my case, they will only be radiating the left side, up around the mandible to just above my ear. The process on Monday took about an hour and a half; on Friday (which is when they verified the settings after the mask fully hardened) it was only about a half hour. It is tight on my face and shoulders (absolutely no movement is critical for precise treatment), but I wouldn't say it's uncomfortable. And the actual radiation treatment itself takes only minutes each day.

Physically, I continue to improve - the scars are slooooowly fading (or I am just getting used to them); I am limping less (although if I do a lot of walking I pay for it at the end of the day - and is that just old age?); my speech is relatively clear and probably more frustrating to me than anyone else when is comes to the clarity and crispness of certain letters and words (the letter "v" - that's another one - thank goodness I don't have to say va-va-va-voom a lot); I am becoming a little more adventurous with food (I had a slice of pizza the other day); the swelling under my chin is barely noticeable now (I call it my "pelican pouch"). I feel like I have come an extremely long way not even 2 months past surgery. I even (as you all know) find humor in a lot of it - Chris and Taryn and I were cracking up when I tried to explain that my doctor's office is near "44th and 5th" (those "f's" just do me in!).

But, truth be told there are times when it all really gets me down. The recognition that I am permanently disfigured, that my face will never be my face again, the disappointment when I see photographs of myself now (and I was never that photogenic in the first place). I confess, I wake up each morning expecting the numbness in my lip and chin to go away (I must have slept wrong!) and it's still there after I shower and get ready for work and then I realize, oh yeah...this is permanent. I get tired of making adjustments - gotta use a straw because the slight droop in my lower lip causes liquids to just dribble out sometimes ("What do you have a hole in your lip?" "As a matter of fact...I do!"); breaking any food I do want to chew into the smallest of bite-size pieces (should eating for pleasure be this much work?); waking up 3 or 4 times in the middle of the night to take a sip of water because of the intense mouth dryness (and having to use special toothpaste and mouth rinse to boot). All of these adjustments today. What adjustments tomorrow? I don't exactly regret the surgery - but I suppose I will if it doesn't buy me the time I am hoping (expecting?) it will.

I know it could be worse. I could be the woman I met at the radiation oncologist's yesterday, the one who is on chemotherapy and radiation at the same time, whose pain is so bad she took 2 Vicodin before treatment, who was on her knees throwing up in the radiation room, whose teeth were blackened and falling out from all the chemo, who was glassy-eyed and unsteady and confused. Is that my future? Or is all this "tumor chasing" (as one nurse described the chronic sort of treatment process I've been undergoing these past 14 1/2 years), with its consequent quality of life "adjustments", going to pay off in a (reasonable) quantity of life (recognizing that my definition of "quantity" changes depending on my level of fearfulness at any particular moment)? I see-saw between wanting to KNOW...and being grateful I don't.

Taryn had her arthroscopic knee surgery Monday and seems to have come through with flying colors. She was off crutches within 24 hours, up and down stairs within 48, out with her friends within 72, and back to work just 4 days later. No sports for a couple of weeks (and she is itching to go to the gym), but it looks like she'll be back on the lacrosse field before the season ends. I'm so proud of her determination (and so worried she'll overdo it!). The University of Maryland is lucky to have her as far as I am concerned.

Emily continues to excel in school - I miss our monthly dinners in New York City (another "adjustment" although thankfully one that is NOT permanent). Ian is visiting colleges and will be making a final decision shortly - he has been invited to several Honors programs in the colleges he's been accepted to. Warren is working hard (as usual) - we talk a lot about the vacation we're going to take when things slow down...in 2013. Only kidding, we know we deserve a getaway sooner than that and we believe we'll be able to when this whole cancer thing settles down a little more. My mother-in-law continues to recover from her eye surgeries; my stepfather is progressing after his ladder accident; friends with various and sundry surgeries, ailments, and sicknesses tell me they are doing well. And (yay!) my niece Samantha texted me that she made the lacrosse team in her middle school. Life is sweet...and getting sweeter.

Blessings and Love this Passover and Easter season.

Hot, Hot, Hot

In about 2 weeks, I am going to be HOT! (No, you crazy blog-readers, I'm not working out again - that's when I start radiation).

I had my consult with the radiation oncologist on Tuesday and as expected he is recommending radiation to be sure any microscopic cells are eliminated. Because I will not need radiation bi-laterally, he thinks he will be able to avoid radiating the throat or tongue so I should have good salivary function (on the other side), and shouldn't have sore throats or significant taste diminishment (it would suck to lose that now that food choices have expanded). Don't get me wrong, there are plenty of other fun side effects to deal with (dry mouth, sunburn on the face, fatigue, lowered blood counts, etc.), but luckily most are not permanent. And quite frankly, this will give me a chance for a better (hopefully curative) outcome.

In preparation for all this, I will be going Monday (the 6th) for my simulation (wherein they do the actual planning for the radiation); then a verification on Friday; then filming on Monday (the 13th); and the first actual day of radiation will be the 14th (the treatment itself only takes 15-20 minutes total each day, so I'll be going early in the morning before work). Then it's 5 days a week for 6 weeks, 30 total treatments in all. So you know what that means - I'll be celebrating my 50th birthday by getting zapped! (And I don't mean with an Effen martini either). It's looking more and more like GALAGANZA will be postponed at least to the summer.

I love you all dearly, but...it may be time to stop spoiling me (well, except on May 18th of course). Don't get me wrong, I am loving the cards, the e-mails, the visits, the gifts, the pudding (Diane, it's REALLY good!), the quiche, the calls, the prayers...all of it (never let it be said that I minded attention). But I'm really doing well, physically and emotionally, and I feel like I'm hogging all this good will away from folks who might really need it! Then again, you have all been so generous you may have single-handedly saved both the economy and our faith in human nature (take that Bernie Madoff)!

Speaking of folks who need some prayers: Danny B. (good luck buddy!); Taryn (arthroscopic knee surgery on Monday - don't worry, she'll be back on the lacrosse field in a couple of weeks); Ken (my step-father, still recuperating from his fall off the ladder); Carole (my mother-in-law); Stephane and family; Margaret; and most of all Patti B., who we almost lost, so thank you God for giving her doctors the skills to save her, for making sure she was in the right place at the right time to get help, and for giving her the strength to come back to us. XOXO sweetie.

I'm ready for some warm weather - bring on the heat!