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.