Fortunate Son

A postal worker in Connecticut is sitting in her mail truck and a tree falls onto her vehicle and kills her. A woman in the Bronx is struck by an arrow that comes out of nowhere and she dies. A piece of steel falls off a truck on the LIE and a man is killed when it pierces his windshield. How is it that I am alive and these people, surely deserving of long lives, are not?


A new year, a new decade approaches (although there is some dispute on that - does 2010 signal the end of one decade or the beginning of another? Discuss). There is SO MUCH that I was blessed to experience this year (good and bad - we miss you Julie!) and once again I am reminded of my good fortune to live here in America, to live in these times of medical miracles, to live in comfort with the ability to afford health care (for now anyway...we'll see what transpires in the coming year), to live with family and friends and neighbors and colleagues who provide unending support, to live knowing my freedoms are fought for and protected by a courageous group of military men (shout out to DJ) and women, to live with love and laughter and light and, yes, sometimes lunacy.


Look at those faces above...could the blessings I enjoy be any more obvious? Our Christmas celebrations were wonderful - I pray all of yours were as well.


I do not know what the next decade will bring, or if I will be around to celebrate its end. I would be lying if I said it wasn't something I ever think about - of course it is. The reflection of "What have I been able to enjoy?" is almost always followed by its corollary, "What will I miss if I am gone too soon?" And more often than not, it is the mundane things I think about: not being around to help decorate Taryn's first apartment; missing out on assisting Ian with his first real job interview; wanting to be at Emily's when she hosts her first family get-together (vegetarian meal included); watching Warren put the final touches on our house (OK, fine, that wouldn't really happen if I lived to be 150 anyhow). But you get the picture - no yin without the yang.


Will fortune smile on me for 10 more years?


Blessings and Love to All - and a special set of prayers for the Ryan family (Magda, Rob, Chris and Maddie), who lost husband, Dad, and FDNY first-responder Jim Ryan on Christmas morning after a series of Ground Zero-related illnesses took its final toll. Our thoughts are with all of you on Earth and with Jim in Heaven.

Christmas Wrapping

The Upper Lou Avenue Ladies Holiday Night of Hoopla - many thanks to Jill, Mary, Carol, Sandra, Michelle and MJ who help to remind me of the important things in life (and no, Sandra, it's not "hot tub hopping!").

I am convinced that the only reason my doctors want to see me (for now anyway) is so that they can admire their own handiwork. My Monday visit to the endocrine surgeon was nothing more than him examining my jaw inside and out and remarking "Fantastic," "Beautiful," and "Perfect" over and over again. Reminds me of Tom Hanks in "Castaway" when, stranded alone on the island, all puffed up and proud he exclaims "I have made fire!" Well, I'm glad I could make Dr. Patel's day (all right, fine, he really DID do an amazing job) - see you in 3 months!

Bozo hair is starting - the new hair is straight, the old is curly resulting in a nice big puff on either side of my ears. Soon, I'll be able to work the "Princess Leia cinnamon buns" look as well. Still not much gray though - God's way of saying "See? I DON'T give my people more than they can handle!"

I'm hoping these Christmas gifts will magically wrap themselves. As many times as I tell myself over the last 30 years or so that I WILL wrap gifts as I buy them so that I don't have to do it all at one back-breaking session, here I am once again looking at hauling out the scissors, tape, paper and ribbons after this weekend is over for a marathon wrapfest. Why, you ask, can't I do it this weekend? Because I will be bringing my favorite daughter and stepson home from their respective colleges, readying the tree for trimming, participating in our church's Christmas pageant, enjoying our family's tree-trimming party (yes, there WILL be more White Russians consumed), bringing Chris to the airport, and then, finally, relaxing Sunday night. So...Monday at the earliest. But...on the upside...Thursday at the latest!

Prayers for friends (some ill, some surgically repaired) - Danny B., Peter, Mike, Eddie - and a fervent wish that Mom and Julie and Aunt Pat and Granny could be here with us this Christmas.

Blessings and Love to All.

Deck The Halls

It has been difficult, to say the least, to keep up with my blog updates. Part of it is because life (rather than treatments and their side effects) keeps interfering (darn that life thing!) - kids going off to college, preparing for the holidays, work projects, church commitments, social activities, yoga classes, minor surgeries (kidding - just the one), "House" and "FlashForward" and "Sons of Anarchy." And while cancer is no less a part of life even without the daily or weekly treatments - I have monthly visits to receive estrogen-blocker injections; follow up visits every 3 months; surveillance studies on a regular basis (most recent: my yearly mammogram) - it's really the other stuff that "gets in the way" of regular reporting on that status of my health.

This frustrates me to a certain degree. Every day brings some random thought, some humorous incident, some real or imagined fear (Today's? I'll catch swine flu and it will kill me because of "underlying medical conditions"), some overwhelming realization, some joyful activity, some sorrowful news, some unidentifiable feeling, some angry outburst. Something that reminds me that cancer is affecting me physically, emotionally, spiritually or otherwise. Sharing what's "outside" is easy to put into words - "Doctor's visit today;" "Good test results;" "Lots of pain last night;" "Tiger did what?!" (well, I guess that's all over the news anyhow without me sharing it). But sharing what's inside? Not so easy and therefore...it is longer and longer between posts.

So...I'm going to try shorter posts that address the random thoughts and concerns of this "post-treatment survivor" phase while still making sure the "health updates" (which kind of started this whole mess many years ago) continue.

Saturday I began the process of decorating the house for Christmas, opening box after box of holiday goodies, trinkets, candles and knickknacks so that I could prepare for the second most celebrated birthday on Earth (mine being the first of course!). As I opened items that my mother had gifted me over the years (Lenox holiday salt and pepper shakers; Santa hat chair covers; an ornament-adorned platter with our family names painted on), I remember how charmed I was each time I opened one of her gifts, how delighted I was by her taste, how much I loved her thoughtfulness. I was at once grateful that I had these memories and at the same time sad that she would never again surprise me with a decorative Christmas token (she always seemed to be able to find something unique and beautiful). And I cried when I was forced to confront the reality that I may never get to pass on the ritual of buying just the right Christmas treasure for my daughter when she has her own home. Of course - it is not about the "things" - it is about the joy of sharing something special between mother and daughter. My heart, it just grieves when I think about the fact that that might be lost to Taryn and to me.

Blessings and Love to All.

What Is and What Should Never Be

A photo of us (Warren is taking the picture) at University of Maryland's Family Weekend - just one reason I haven't been posting as often as I probably should be.

First off, apologies to my "blog stalkers" who have faithfully logged on only to find no updates these last couple of weeks. Can I blame it on the Yankees? It does seem as though I've spent an inordinate amount of time watching baseball lately, and quite frankly I can't wait until the World Series is over - I've had enough of Joe Girardi, Mark Teixeira and Alex Rodriguez being in my dreams. (And so has Warren!)

It is almost six weeks since my gall bladder surgery and I'm doing well. The only hurdle left is exercise - by Wednesday I'll be able to get back to my yoga classes. I'm eating (almost) normally, but kind of sticking to the low-fat diet I got used to over the last couple of months, with a few extra treats thrown in every now and then (donuts!). The diminished taste I've had since radiation continues, but increases (almost without my realizing it) steadily. Most times, I don't know for sure whether or not I can taste something until I try it. So eating meals is a surprise every day ("Oooh, I just tasted that!"), but there are very few items now that I don't taste at all. I had expected it to be sudden, but it has been gradual, so at some point I expect I'll realize I'm tasting everything and it tastes the way it's supposed to taste. At least stuff doesn't burn anymore - I got to enjoy a nice White Russian last weekend while visiting Stephane and Kent in Mass.

THE HAIR continues to grow up vs. out, but the new hair coming in is definitely wavy vs. curly. I looked at pictures from the last time around and the growth is following pretty much the same pattern as last time so it's easy to predict the future - "By December it will be at it's curliest. By June it will be long enough to blow dry. By September I'll need my first haircut." It can be pretty frustrating though - I've actually thought to myself, "If I have to go through this again, I'm sticking with the bald look for good!"

It's a funny time in post-cancer world. With a clean PET/CT behind me there's a measure of relief - I find myself thinking things like, "Knowing the typical course of my cancer, I probably have at least until mid-2012 before I need to start worrying again." On the other hand, in reality there IS no "typical" course - I could have something to worry about in a month, a year...or 10 years. So clean scans aside - I never really stop thinking about it. Is that lump a tumor? (nope, just a bump) Are my bones aching from another metastasis? (nope, just overdid it going up and down the stairs today) Does the shape of my jaw feel different today? (nope, I'm just imagining it). No doctor visits are without concern (even though both my doctors have increased the length of time between visits from 2 months to 3 months). I am thrilled and grateful that I am alive, relatively healthy, and able to enjoy all or most of what I was able to enjoy before the surgery (albeit with a little different look!). But boy, do I wish every day that I didn't have to think about cancer at all.

I think one of the reasons I haven't written as much is because it's so hard to put into words what I'm feeling without sounding whiny or ungrateful for the (fourth) chance at living that I've been given. And it is all complicated somewhat by the fact that my treatment is not really over yet (I still need my teeth replaced) and by the obvious physical changes to my face. It is a lot easier to be in denial when the scars are generally hidden from my own view, as the breast and skull scars are. It is not as easy when a glance in the mirror every day reminds me of what was, what is, what could be, what should be, what won't be, what may be. It is not as easy when I consider that I am not only occasionally fearful for my own future, but also fearful for the future of my daughter, my sister, my cousins. I try hard to stay positive, to be reminded of all the blessings in my life, to enjoy the day and the moment I'm in, to appreciate daily the many people who keep me going in the toughest of times. But cancer doesn't make it easy. And I sigh tiredly and think to myself, "This just shouldn't be" - for me or for any of the thousands out there dealing with this crazy disease.

A quick shout out to Lynne to "GET WELL SOON!"; a huge thank you to Stephane, Kent, Julien and Naomi for a fun weekend; and a special hug for Little Jen (my dental hygienist) who went above and beyond this week.

Blessings and Love to All.

A Hard Day's Night

Well, I have been relieved of yet another extraneous body part (thanks MJ!) with the removal of my tetchy gall bladder last Wednesday (Warren's birthday, by the way). And recovering nicely thank you very much.


Of course, it was not without it's (minor) complications. What was supposed to be an outpatient surgery turned into an overnighter when I had a bad reaction to the anesthesia, something that had never happened to me before. It wasn't even decided until almost midnight that I would be admitted; once in my hospital room (exhausted, nauseous and groggy from morphine) I was still asked the million and one admission questions by a nurse whose accent I had trouble understanding (and so many were repeated more than once). I'm sure this was a welcome diversion for the other patient in the room (who really wants to waste time sleeping when such fun is to be had!) but for me it was excruciating. I did well from the moment I was admitted and of course was discharged by noon the next day, none the worse for the wear and highly entertained by my roommate's backstory which included: drugs, alcohol, rehab stints, a 12-year-old son home alone, government-funded housing, medical self-treatment, an ex-husband with custody, an enabling mother, a suspicious social worker, weeping, threatening, shifting stories, gastric bypass surgery, 4 gallons of vodka, a current husband (residence unknown), a National Enquirer, taxi vouchers, a jovial male nurse ("Hang in there!"), discourse on the best and worst hospitals on Long Island (she's been to quite a few), and outright lies. Didn't miss my Blackberry and People magazine at all!


Recovery is going well. I only needed the fun painkillers the first day home (just Tylenol since then), I've gone out walking to get my body back in condition, and I will be back at work on Monday, albeit with the restriction of no lifting or exercise (what, no yoga again?!) for a couple of weeks. And I need to continue, for awhile at least, with the low-fat diet I've been "enjoying" this past month. While it freaks me out a little that I've now had 2 surgeries in the course of one year (3, I guess, if you count the fibula bone removal as a separate surgery), I'm glad that I had this done. Indeed, the doctor did find some scar tissue on my gall bladder from the attacks, so waiting and risking further attacks would have just led to a more complicated procedure than the simple one I ended up having ("lap choley" as those of us in the know call it). All that being said - I wouldn't mind taking a (permanent?) break from surgery!


Once again, I am thankful for all the support and prayers I received but a special shout-out must go to the young ones in my neighborhood: Abby and Anthony for helping their mom do some shopping for me and for their beautiful card; and Caralynn for her awesome gift (a colorful, homemade bowl that now holds my Jelly Bellies) and sweet card. I am doubly blessed with great neighbors AND their amazing offspring.


Some cool things I got to enjoy these past couple of weeks: a visit with Taryn in Maryland; a visit from Ian this weekend; talking to Emily about her upcoming study abroad in Russia; the Yankees winning the AL East Division; teaching this year's first Sunday School class last week.

Some cool things I'm looking forward to in the next couple of weeks: Girls' Night Out (with the neighbors) on Wednesday; Girls' Night Out (with my friends in the city) on Thursday; Vinnie's Bench Party on Saturday; Parents Weekend at UM; Chicken McNuggets (duh!).

Blessings and Love to All.

Freedom

...from the tyranny of cancer - at least for now. My PET/CT results were negative, and although not unexpected (I did, after all, have similar results just 5 months ago), it is still always a relief to get confirmation. Now I can stop thinking that every twinge or pain or crick is a tumor lying in wait (yeah right).

I realize that even though I wasn't terribly worried about the results, there will always be an undercurrent of fear that the treatment(s) didn't work. Consider: I knew I would be blogging as soon as I got these results, and while many times I don't figure out a title for my post until I'm done writing, this time I did have titles picked out for both a positive and negative outcome. No matter how good I feel, no matter how at peace I am with my current situation, no matter what my doctors say or expect, I will never be able to escape the "just in case," the "what if," the "this is it." The joyfulness of surviving 15 years will always be offset by the sadness at having to deal with and think about cancer for so many years of my life. It appears I will always have to fight for freedom.

And let's not forget, this whole gall bladder thing still needs to be resolved. I was finally able to schedule my surgery; it will be done laparoscopically, a one-day in-and-out (no pun intended) procedure. It's set for September 23rd, which also happens to be Warren's birthday, but it was the only day they really had that fit my schedule. Don't worry - he's used to family members having organs taken out on his birthday - Emily had an emergency appendectomy on his 40th. What really stinks is I will now miss Girls' Night Out with my neighbors!

Taryn and Ian have adjusted quite well to college life - both are enjoying classes, making friends, going to football games (Go Terps! Go Blue Hens!), engaging in activities, going to parties. Warren and I did go to visit Ian the day before his 18th birthday to celebrate with him - we had lunch at the Wilmington Riverfront. And Friday I am swinging down to Maryland to see Taryn - 3 weeks is the longest I've ever gone without seeing her! Emily is working hard to maintain a tough schedule (she's commuting to classes this semester) and preparing her application for the study abroad program she's interested in for next semester. Warren's business is slowly picking up again and he is putting in a lot of hours trying to finish jobs and generate new ones. And I do fine with the quiet and the calm in the house...at least until I hear stories about murdered college students (Annie Le of Yale) and freshmen women being gang-raped (Hofstra - and even though it turned out not to be true, it still brought up disturbing issues) and alcohol-fueled partying. Then I worry about my kids, their friends, my nephew knowing that even if they exercise their freedom of choice to make good decisions at college, that random horrors can still happen. And then I pray.

Eight years ago, on September 11th, we lost forever Vinnie's sweet smile. His sacrifice; the sacrifice of his fellow firefighters; of our police officers; of our brave citizens on planes and in the Pentagon, and in the Towers; of our courageous and committed armed forces in Afghanistan and Iraq; have allowed all of us to continue to enjoy our many freedoms. As we work through the many contentious and confusing issues confronting our country let us not forget this fact, and let us honor our heroes by debating honestly and thoughtfully and respectfully with our fellow human beings. And let me humbly acknowledge that even temporary freedom from illness is far and away preferable to the fate that befell our wonderful Vinnie. We miss him dearly.

Blessings and Love to All.

So Far Away

I've dropped Taryn off at birthday parties, at relatives' houses, at the babysitter's, at lacrosse practice, at the beach, at the movies, at school, at church, at the library, at Chris's, at Molly's, and at Brianna's. But dropping her off at college this past Friday was an experience unto itself.

Surprisingly, I didn't cry when we said our final good-byes on Saturday. We (Chris and I) had spent time Friday getting her room in order (she's in a triple with two very nice young ladies), and then went back to her dorm Saturday with a few more things that she needed. She was subdued, looked a little scared, but seemed ready for us to leave so we did. After visiting Ian at Delaware, where he had been dropped off by Warren and Emily, we drove back to Long Island and that's when it began to hit me. The closer we got to home, the more I began to choke up, silently crying while traveling the Southern State Parkway (well, I didn't want to wake the snoring Chris by openly sobbing!). I dropped off Chris at his Dad's, and drove home to an empty house (Warren and Emily hadn't returned yet from their visit to Maryland), which normally would thrill me, but only served this time to upset me. The call went out to Lysa ("Awww, honey! She's going to come back you know.") and after a brief weepfest I was OK. But...it doesn't feel right. Not. Quite. Yet.

It's not just that she is so far away physically - it's that she is so far away from the baby I brought home from the hospital 18 years or so ago. It is amazing how confident and accomplished and self-sufficient she seems after only a few days away. Sure, she misses me (she has called every day, even if only for a few minutes while walking home from class), but she sounds genuinely happy to be where she is. I LOVE that. I am so proud of her independence - after all, it's what I set out to help her achieve. But I am feeling...purposeless. What DO I do if I am not "mothering?"

Conversely, I also feel like a great weight has been lifted because for so many years I was afraid I would not get to enjoy this experience with her and...I made it! We made it. And while I know there will be many more "big"moments in her life, somehow this "getting her off to college" loomed very large in my mind, arguably larger than any other events past or future. There's no "bucket list" beyond this; I'm not feeling any real need to begin bargaining with God again. Don't get me wrong - I hope to live a good, long life and to see Taryn graduate college, start a career, get married, etc. I'm just not feeling anxious about (potentially) missing any of it. I'm totally in the present right now.

I'm also totally needing to have this damn gall bladder removed! I visited the surgeon today, but we were unable to set a date yet (his scheduler wasn't in the office). For now, it's still looking like sometime in September (unless I have an attack - then it's "go" time then and there).

Follow-up PET/CT Scan tomorrow to see how everything looks after radiation. I don't expect there to be any problems (but it's always hard to wait for results). I continue to heal very slowly - still have diminished taste, salivary function, etc. Health (or what passes as health for me) often seems like it, too, is so far away.

I miss her smile (there isn't a more beautiful one in the world); I miss seeing what she is wearing each day (that girl really knows how to put together an outfit); I miss hearing her and Ian giggling in the kitchen late at night as they share a snack and compare notes on their evenings out; I miss her sense of humor (she is a physical comedienne in the mold of a Lucille Ball or Debra Messing); I miss watching her work the radio, flipping from station to station in search of the perfect Taylor Swift song to listen to; and I miss her cuddling up to me when it's time to watch "Entourage." So far away - but never far from my heart.

Blessings and Love to All.

Heartache Tonight

Her name was Julie, but she was also known as Gomar and GranJulie. She was Jim's wife; Jimmy, John, Chris, Jeanne, and Billy's mother; Annie and Margie's mother-in-law; Jameson, Taryn, Dustin, Samantha and Billy's grandmother; Brownie, Gina, Billy, Jimmy and Peggy's sister; and aunt to dozens of cousins in her family. She lived to be 86 years old and passed on into the welcoming arms of God and those of her already deceased siblings yesterday afternoon.


Julie was funny (and passed that sense of humor onto her perpetually pranking children). She was fashionable in her day, with an elegant sense of style, and was proud of her Irish heritage (maiden name: Carroll) She had a flair for writing, once penning a moving poem about American soldiers that she shared with her granddaughter Taryn. She loved acquiring kitschy, quirky items (the kitchen is filled with all kinds of cow curios and knickknacks) and enjoyed the unique personalities of each of her children, even when they were at their unruliest (who can forget the story of her pouring soup on young John's head when he complained about the meal he had been served?). One of the things that I loved best about her was that when she called, she always spent the exact right amount of time on the phone - not too short and not too long, which made me look forward to speaking with her. Right up until the very end, she demonstrated concern and compassion for others, worrying over me and my health issues even as she struggled to overcome her own.


This is by no means a comprehensive accounting of Julie's life and person - she was far more multi-layered than I can ever account for here. Consider this merely a small tribute from someone who loved her dearly, not only because her son gave me the most amazing gift I will ever have in Taryn; not only because the family she and Jim created are a blessing that Taryn will get to enjoy her whole life; but also because she made me smile and touched my heart. And although there is heartache tonight, I know that there will soon be laughter, and love, and living again, because Julie wouldn't have it any other way.


God keep you safe in his loving arms, Julie - "Twas heaven here with you."

Like A Rolling Stone

Well, it looks like another of my spare body parts is going to be removed. God sure knew what He was doing when He gave us all these extras.


After my third gall bladder attack in 4 months, and second in a week, it has been determined that I do in fact have gall stones and my gall bladder needs to come out. This latest episode, which actually landed me in Stony Brook Hospital for 3 days, started Wednesday night while Warren and I were visiting Jackie and Joe in Breezy Point. Those three spent the night whooping it up, drinking and carousing while I writhed in pain on the couch listening to "WipeOut" with Leah and Ryan. Naaah, kidding - I was on the couch for awhile, hoping it would pass, but Jackie and Joe and Warren were quite attentive to my distress. Eventually, it was evident that I needed to get to the emergency room so Warren and I left (and now, I'm not sure we'll ever get invited back!).


By the time we got to the ER, I was at a level "10" on the pain scale, indicating in all likelihood that my body was trying to pass the stone. After some VERY effective morphine was administered (nasty unpleasant buzz but getting rid of the pain was worth it), I was admitted for evaluation and possible surgery. Thus began the by now familiar routine of blood work, monitoring, diagnostic tests ("blah blah BLAH" as Tommy Gavin would say) and my favorite part of the process - no food for 45 hours! This was a result of several factors: the doctors wanting to give my poor gall bladder a rest; the possibility of a diagnostic test that would need me to fast; the possibility of surgery and anesthesia; and a failure of the doctors (internists, GI specialists, and surgeons) to get on the same page soon enough with respect to my treatment plan.


At 44 hours and counting I advised my wonderful and compassionate nurse Maureen that if I did not get food or see a doctor within the next hour, I would call my husband and leave the hospital. And eat. After all, by then (Friday at 4:00 pm) it was clear no surgery would be taking place before Monday. An hour later - I had a menu (Stony Brook has room service style meals) and a plan. All right, the menu was low-fat foods only but by then I could not have cared less. Another 24 hours later I was going home.


So, it appears surgery will happen sometime in the next couple of weeks, although not before September. I will find out for sure on Tuesday when I see the surgeon. It is beyond the point where just following a low-fat diet will help, even if I was so inclined to adhere to such a distasteful (pun intended!) regimen. Ironically, the choices I've had to make as a result of the surgery and radiation side effects are partly to blame for this little predicament. There was no winning this one.


I did, at one point, have to make an impassioned plea to my doctor in the hospital. They wanted to do the surgery (it's pretty uncomplicated, typically done on an outpatient basis) late this coming week and I refused. I explained that I have spent almost 15 years of my life fighting to stay alive, and the last several months undergoing rigorous therapies, all in an effort to continue to enjoy the important moments in Taryn's life, and in my family's lives. I was emphatic that I was NOT going to miss taking her to college, under any circumstances, and having the surgery anytime after Monday would have impacted my ability to do so in the way I need to. I don't know what the future holds; I don't know what course this disease (cancer) will take; I don't know how much "quantity" is left in my life. I only know that I have to be present, I have to seize all the family time I can, and I have to be able to enjoy the "quality" time that is before me today. And that includes bringing her to Maryland, getting her settled in her new college life, hugging and kissing her as she begins this oh-so-very exciting chapter in her life and then quietly crying when I arrive back home and my heart aches because she is not there.


Of course, it also means giving up my precious Chicken McNuggets and Starbucks shakes for a short period of time (another attack means I won't have a choice in the matter of immediate surgery), but I can handle low-fat for awhile... I think. Bring on the Smart Balance!


And there is always a bright side - it just so happens that I was on the same floor as Taryn's Grandma Julie (who is still fighting some serious health issues) so I got to see her a couple of times and I got twice-daily visits from her Grandpa Jim while I was there, which really lifted my spirits. He gets a special shout-out this week for taking the time to see how I was doing even though I know he must be exhausted dealing with his own disrupted family situation right now. It's no wonder Taryn has turned out to be a wonderful young lady - look at what a great family she is descended from!


Blessings and Love to All!

Hello Old Friend

So, last Wednesday I go with Patti to a pre-screening of the movie "Julie & Julia," a movie about food and cooking and blogging, and end up in the emergency room the next morning with a gall bladder attack, partially a result of the food I've been eating since radiation. Leave it to Scott to point out the irony of THAT particular sequence of events in my life.

It's the second time I've had to visit the emergency room for this particular problem, so it's time to visit a gastroenterologist to prevent future problems (they did find some gallstones when they did the testing), which I probably should have done last time, but since I was in the middle of radiation treatments at the time I figured I already had enough on my plate. I do find it somewhat amusing that the diet I've had to adopt and the weight I have lost as a result of the radiation are doubtless contributory to the development of this problem. (But...I'm still not going to eat yogurt!)

Of course, it makes me wonder what else is coming down the pike - after all, it is not uncommon for people like me to actually die of complications from cancer treatments rather than the cancer itself. Quite frankly, that's just unfair - "She died after a 5 year battle with gallstones" doesn't sound nearly as impressive as "She died after a 25 year battle with cancer!" (Not that I'm going anywhere soon, mind you).

I did have my regular visit with my oncologist last week (and in a further ironic twist, she did an abdominal exam that revealed nothing remarkable). All is well. I do have to have my follow up PET/CT scan at the beginning of September but there is no indication right now that it will be anything but a routine surveillance study.

Yesterday, I got to have lunch with an old friend that I hadn't seen for a few years (although we have kept in touch via phone calls - he's not very techno-savvy!). George and I have known each other since I was 16 years old - he was a neighbor of my then-boyfriend Tommy. He was at my college graduation (I can still hear his "Wooooo!" from way back in the auditorium); I was at his first son's christening. He was with me when I got my first tattoo ("First?!") - he was getting one and didn't flinch once so I figured, how bad can it be? (Bad! Painful! Ouch!) and he taught me to play a mean game of Liar's Poker (I still carry the lucky dollar I won in some long-closed gin joint he took me to). I remember in particular a 4 day camping trip to Amagansett where we all got drunk and I got sunburned pretty badly, to the point where George and my boyfriend had to keep putting cold, wet towels on my arms and legs because I was practically hallucinating from the pain. He would drive us all around in his van (yes, it had a bed in the back - this was the 70's remember), or we would ride our Harley's together (OK fine, I was just a passenger on my boyfriend's bike) catching sunsets at the beach or going to concerts. He's not someone you would picture as my friend (does smoking, drinking, long-haired, redneck aging hippie give you the picture?), and he hasn't changed a great deal since we were 16 and 19 years old. He's not a rich guy, but he's blessed with a smart, patient wife and 3 sons that he is quietly proud of. We may not speak daily or see each other too often (he and his family live in Virginia now), but the memories of our times together make me smile (and sometimes cringe!) and it is comforting to know that I can always count on his friendship no matter what.

Chris's mom Julie (Taryn's grandma) is really struggling to get her health back, and is right now in the hospital with pneumonia (among other problems). She is frail, but very aware of her surroundings and enjoying the company of her family as she recovers. Please help her with your prayers.

Thankful, as always, for the terrific friends I have, both old and new. Blessings and Love to All.

Here For The Party

I may not be able to taste, drink or speak at length without drying out my mouth but it does not appear to have slowed me down any. Witness the photo evidence above.

The first photo is of our 14th Annual Upper Lou Avenue Block Party, held on July 18th this year. In addition to our usual food fest and Tiki Bar (courtesy of MJ and Anthony), we held a food drive, asking guests to bring a non-perishable item for the local food pantry. We collected 6 bags of food (which Warren and I brought to the church the next day, and many thanks to our friend Cindy for meeting us there). And best of all, we had a touching and exhilarating tribute to our wonderful, departed friend Mickey (if you recall, he was my neighbor that died while I was in the hospital). Warren said a few words about Mickey and then just when we were all getting that lump in our throats, the DJ put on the song "Mickey" by Toni Basil and all the Lou Avenue neighbors gathered in a circle to dance wildly, laugh loudly, and hug tightly, all in celebration of the man whose smile lit up our block. And in our hearts, it still does.

The second photo is of Warren and I at our friend Mary Cannon's barbecue. Our "Girls Night Out" girls (Mary, Mary, Patty, Patti, Jackie, Elisa and I) gathered at Mary's house with our families (yes, we even let our husbands come!) on an absolutely beautiful day. We ate and drank and chattered and planned (Girls Weekend Getaway - let's do it!) and marveled at how much our children have grown (I give Cecelia one more year before she's taller than Mary), how bright and beautiful the girls are (could Colleen's eyes be any more gorgeous?), how smart and tough the boys are (Warren is still talking about how impressive Ryan was dealing with that splinter the size of a 2x4 in his foot), how fast it all goes by (was I really discussing college visits with Lucy?). At the risk of sounding boastful (this will probably come back to bite me), I am going to state that, based on what I saw and heard yesterday, we have all done an amazing job as parents so far. (At the very least we don't appear to have created any seriously damaged ones!) Clearly, we deserve a reward...like, say, a Girls Weekend Getaway!

Life's challenges continue, but so does it's celebrations. Make no mistake, I am here for the parties.

Blessings and Love to All.

American Girl

At Long Lake, where Warren and I spent the Fourth of July weekend with my in-laws, we watch the fireworks from Glenn's boat, anchored in the middle of the lake. With the Adirondack Mountains surrounding us, the boom and crackle of the fireworks reverberate like the sound of 43 NASCAR cars speeding around the track at 200 mph. Maybe the fireworks aren't as impressive as those in NYC or even Jones Beach, but it is nevertheless a magical display and an awesome experience (can you tell I just LOVE fireworks?) in an awesome country. God Bless America! Pictured at right - Dom, Lynne, Glenn, Sharon, Warren and I at the camp.


The worst of the effects of the radiation have just about disappeared, and now it is a waiting game for taste and salivary function to return. I have what I call a "dulled" sense of taste - I taste a lot of things, but just barely and not the whole time I'm eating. I described it to Taryn this way - imagine looking at stuff without your glasses on or contacts in. You can see things but they are blurry; some things you can identify and some you can't depending on how close they are, but even the things you can identify are blurry. So most things I eat are not necessarily enjoyable, but at least they're not completely tasteless anymore, which has allowed me to expand my menu a bit (Grilled chicken honey mustard snack wrap from McDonald's - YUM!) and eat a little healthier (I'm able to enjoy some fruit now). I still can't handle anything too spicy since I'm still healing, but it's nice to have a few more choices. I'm still dealing as well with some severe dry mouth issues; I've learned to have water with me at all times, especially if I'm going to be speaking a good deal.


I did see the endocrine surgeon today, who is very pleased with what he sees and feels in my mouth. We talked a bit about some of my appearance issues (the asymmetry of my mouth and lips in particular) and he basically said that although there is plenty that could be done to resolve my concerns in that area (i.e. more plastic surgery), it would be wise to wait and see how everything looks after a year has passed because so much changes over the course of a year. I know the flaws are more obvious to me than to anyone else, but I still would someday like to look better than I do (oh Vanity, thy name is DonnaLee!).


Must. talk. about. THE HAIR. I thought at first that it was coming in straight this time, or maybe wavy, but it has reverted to curly and now looks a lot like it did coming in last time. So for now I've got this Brillo pad on my head, although luckily, after about another 6 months, it should look pretty good (hard to style or control...but not bad-looking). I find myself touching my hair a lot, it feels so soft because it's such "new" hair. Wait a minute...didn't I also touch my little bald head a lot because it felt good? I think I might just be obsessed with my own head! (Guess that's potentially better than some other body part obsessions I could have).


Best part of my week - I am back to my yoga classes! I went on Wednesday and again on Friday and completely surprised myself by getting through both classes quite well. My stamina was good, and even my flexibility wasn't bad, just needing a little work to get back to where I was before the surgery. My balance was off a lot so I am going to need a good bit of work on my core to regain that, but I am so encouraged, not only from a physical standpoint, but also because regularly practicing yoga keeps me grounded in the here and now (something I really need because I tend to dwell too much on what the future will bring right after a bout with cancer). And it was good to see Leslie and Sumati, my yoga instructors, who worked very patiently with me in class. I really missed my practice both on and off the mat, and I'm looking forward to regaining my form in the next couple of weeks. (Next up: spin class! But not for a couple of more weeks).

Prayers for Julie and for Jodie (a longtime friend of my brother's), here's hoping both get to enjoy some better health in the coming weeks. And special thoughts for those in our country and those right here on Long Island that are hungry - we will do our best at the block party to help. It's difficult to not be able to taste; it's worse to have nothing TO taste. I don't really have it so bad, do I?


It's good to be back in the present - all the best things happen there.

Slow Ride

I know you've all probably seen the photos already, but I just had to include a picture of my stunning daughter and handsome stepson from their Senior Prom this year. Between that, graduation, and their graduation party it's no wonder I haven't been able to find time to fill you all in on the latest!

The last few weeks since radiation treatments ended have been S-L-O-O-O-O-W in terms of recovery. Three weeks past my final zapping I still had significant pain and swelling inside my mouth (although the daily pain is pretty much all gone now) and I continued to have trouble eating and speaking. At this point, I can eat fine (more on that later) and I can speak normally (well as normal as one who has a resected jaw can!), albeit with some adjustments. My mouth is seriously dry and when I speak more than 2 or 3 sentences I have to drink some water in order to keep going. And at night, I wake up 3 or 4 times with an absolute DESERT in my mouth - luckily a few sips of water and I'm back in dreamland, at least most of the time.

Unfortunately, I still cannot taste anything and, after visiting my radiation oncologist today for a follow-up visit, I've gotten the news that it will probably be a minimum of 2 more months before taste returns and up to 7 more months before that happens. I kept thinking it was returning because I would feel like I tasted something, then 2 bites later...nothing. He said that was common - the tip of my tongue has some taste, but when food moves to the back of the tongue (as it must eventually) there will be no sensation. So, for the time being I'm stuck with my mushy Special K, my scrambled eggs, and my creamy pastas for nourishment. I have also discovered that some things (mostly certain liquids) actually feel like they're burning my mouth - soda and beer specifically. And forget anything like cakes or breads - too dry to even remotely enjoy. The good news is, despite the lack of variety, I have managed to eat enough to maintain my weight pretty consistently for a couple of weeks, and although I do need to put some back on (it sucks not having clothes that fit), I'm pleased that I'm not continuing to lose. And best of all I don't have to see the radiation oncologist for 6 months - hot dog! (mmm...a food reference, what a surprise).

As noted earlier, we had quite a few events these last several weeks. Taryn and Ian finished with classes and finals; I took Taryn to Maryland for her Student Orientation (and my Parent Orientation); the Senior Prom was last Wednesday (and you don't even want to know about the impromptu after-prom party that was hosted by, you guessed it, the Stewart-Tabolt household until 11:00 am the next morning. Let's just say I am blessed to have the neighbors I do!); their graduation was Thursday night (such great weather that day that the school was able to have it outdoors); and of course, their graduation party this past Saturday. It was a, shall we say, lively affair attended by all or most of the Tabolt, Sempey and Stewart relatives along with many friends, co-workers and neighbors. Needless to say, Warren, Chris and I all slowed down and took well-deserved afternoon naps Sunday!

A few random notes: Happy 16th Birthday to my godson Bradley; wishes for continuing and/or better health for Julie, Dom's cousin Mark, Dan the Man's mom, Aunt Barbara, Patti B. and my dad; congratulations to ALL this year's graduates (I'm realizing that I will not only miss my own children when they go off to college...I will also miss their friends); a proud hug to Emily for finishing her second year at the City College Honors Program with a STELLAR average; looking forward to taking it slow and relaxing at Long Lake this 4th of July with my fun and fabulous in-laws; and lots and lots of hugs to my niece Laura.

Blessings and Love to All!

Break on Through

About 10 days since radiation ended and it's a little bit better each day, although, truth be told, recovery isn't happening fast enough for me (like it would ever be fast enough, right?).

Still can't taste anything and of course, now the obsession begins. What should be the first thing I eat when I CAN taste again? You laugh, but it's hard to choose when there is SO much food that I miss. And Taryn and I were wondering this morning (we went to Bagel Chalet for a nice mother-daughter breakfast after teaching Sunday School), will I all of a sudden be able to taste or will it be gradual? After all, it seemed like I lost taste gradually and in fact, I can remember the last thing I actually tasted (the lemon in the Chicken Piccata when my neighbors and I went out to dinner). I'm thinking of putting it up for a vote: "What should DonnaLee eat first when she can taste again? A) Chicken McNuggets B) Bagel C) Chocolate (anything chocolate!) or D) Juicy hamburger" And don't worry, I already know what I'm going to drink when I can taste again - Red Dish Effen Martini here I come! (Ellen - will you be joining me?)

I am speaking a little now, although I pay for it at the end of the day. I spent an hour on the phone with Chris yesterday, then 2 hours hogging the conversation at a party with my neighbors in the afternoon (yeah, they kept trying to shut me up, citing "concern" for my oral health - I think they were just tired of me going on and on!). Definitely needed some Motrin that night. There is still a bit of swelling on the inside of my mouth, and one large, deep lesion by my upper teeth that I suspect will take quite a while to heal. But I am having to numb my mouth a little less each day in order to eat or speak, so that, as they say, is progress. Gotta keep focusing on the little victories until I break on through to health again.

Visited with my new oncologist this week and she was very reassuring about having an understanding about my particular case. I was worried that I was going to have to recite my whole life story again, but she said she had been thoroughly briefed and felt comfortable taking over my care. Based on the one meeting - I think I'll keep her (and not just because her name is a helluva lot easier to spell than my old oncologist's name). I don't have to see her again for 2 months.

End-of-the-school-year activities are heating up: Emily is done with classes (but won't be back home until the end of June because of her job in the city); Taryn and Ian have about a week more of classes; we are knee-deep in plans for the prom and their graduation party; and starting to plan for college orientation (Taryn's is only 2 weeks away!). And the summer is already filling up (Laura's wedding! Yay!) - and I really feel like I will have recovered enough to enjoy all of this.

Blessings and Love to All!

End of the Line

Whoa - don't panic! The title is referring to the fact that I finished radiation treatments today. Plenty more gas left in this tank baby.

I am very relieved this is over. Without a doubt, radiation is/was worse than the surgery and in some ways worse than chemo. At least with chemo I'd have a couple of totally miserable days, then a couple of weeks of almost-normalcy. Once the side effects kicked in with the radiation - nothing but misery and the last two weeks (and next two weeks as well) have been particularly painful. I actually took a heavy-duty painkiller tonight because my mouth is just screaming with hurt (so once that starts to take effect it will be adios on the blog). I consider myself pretty tough, got myself off painkillers fairly quickly in the hospital and haven't used any since I've been home, except for the occasional Tylenol or Motrin. But I sissied out tonight - I figured that after driving home from work crying for 20 exits or so on the LIE I deserved a little break.

One of the worst parts was not being able to cry TO anybody, not being able to reach out for comfort because of not being able to talk without further adding to the pain. It's hard when I can't explain what hurts and when I can't express frustration at the slow process of treatment and when I want to vent about what a huge mistake it was to even have the surgery (not really, but it's what I feel at times) and when I want to just cry over the fact that I will be forever disfigured and freakish looking. I know I pour much of this out when I blog, but I would have loved to have picked up the phone while driving (yes, hands free!) and called Lysa or Patty or Mary to share my sorrowful tale of woe.

Instead, while I'm heading home I try to distract myself by turning on my satellite radio. First song up tonight? "Do You Really Want to Hurt Me?" by Culture Club. I actually said out loud, "Are you kidding me?" I changed the station...to hear "Burnin' for You" by Blue Oyster Cult. Come on! Another conspiracy? Like the food commercials? Thank goodness when I switched again it was to a song that was relatively benign vis-a-vis my circumstances ("Sober" by Pink). Then again, I haven't had anything to drink since this ordeal began...

And of course, there is always something to remind me that I am not nearly as bad off as many others. Witness today when, as I was leaving, I spotted a young girl, four years old, hair just starting to grow in after chemo, surgical mask on her face, sitting patiently on her mother's lap, awaiting her first radiation treatment. I pray her journey is a more comfortable one than mine, that her prognosis is a good one, that her mother has the strength to bear the illness of her precious child, that health and a long life awaits her. And I thank God for the bounty of good health enjoyed by my own children.

Fashion alert - I am wearing high heels again. Flats...be gone! Now if I could only find some clothes that fit (amazingly, an inability to eat much causes weight loss). Not to worry...I plan on putting a fair amount of what I've lost (about 20 pounds) right back on. As soon as I can taste food that is.

My 50th birthday has come and gone with little fanfare at home (although Taryn and Ian both made me feel quite special with the gifts they chose for me), but a sweet celebration at work. Sheryl very considerately made me a jello mold, knowing I couldn't really have or enjoy cake (this is a very big deal - Sheryl does NOT regularly make desserts, so she gets a shout-out for that), and there were banners and streamers and flowers and cards. And lots of birthday wishes from all of you. It may not have been the birthday I was dreaming of, but on a certain level I felt wonderful about having fought so hard to make it this far. Many more, many more...

And now, the "I love you man" moment has arrived so I will take my leave to enjoy this little pain-free buzz that I will pay for tomorrow with grogginess and, quite possibly, crankiness...but that's tomorrow and this is tonight. Is that a smile on my face?

Blessings and Love to All.

Hungry Like The Wolf

There is a vast conspiracy out there among television programmers to torture me, as I have noticed that every other commercial involves food. Food I want. Food I am weeks away from being able to enjoy. I want Outback Steakhouse, and Applebee's, and Kentucky Grilled Chicken, and Olive Garden. I want fresh fruit and chocolate and salad and potato chips and small baby peas and penne alla vodka. I want a Corona with lime, a Diet Pepsi, a cosmopolitan and an iced tea. Why, oh why, are they doing this to me? (And don't ask me to turn off the TV - Jack Bauer is 2 hours away from saving the world again!)

This week was (as expected) quite difficult but here it is Sunday again and I made it through. Seven more treatments to go (yes, I've got a countdown going on). The pain shifts inside my mouth - as lesions heal, new ones take their place in other spots. Right now, it is my cheek (inside, up by the teeth) and the side of my tongue that hurts the most. No matter where the pain is though, it is unavoidable that it hurts to speak and to eat (well, I am starting to sound like a broken record on that one!). The "sunburn" on my face is now very noticeable, very red, very dry (despite my best efforts to keep it moisturized), very itchy, and just starting to be very painful. I'm realizing that, just like any other sunburn, once I am done with the treatments it will take a long time to fade to a tan, and then even more time to fade completely so that my face is normal again. I told Warren that if he doesn't buy me a hot tub I'm just going to tell people that my husband hits me (kidding!!).

It is hard to believe that tomorrow I am going to be 50 years old (c'mon, you know I had to work in my birthday somewhere!). I was reflecting on the fact that I couldn't really celebrate my 40th because I was recovering from surgery (the emergency hysterectomy). I was supposed to go to Paris with a friend who was also turning 40 a couple of weeks after me - and instead of waiting for me to recover, she went with her boyfriend because she was determined to turn 40 in Paris! Ah, loyalty! Actually, it worked out great - I ended up going with Patti B. to Paris and London the next year for Patti's 40th and we had a blast. So...where to next year Patti?

I confess to being saddened over my 50th. I was very much looking forward to turning 50, to celebrating in a grand way (GALAGANZA!), to feeling well and strong and invincible, to a day of smiles and spoiling and cake and cosmos, to appreciating the half-century of life I've been privileged to enjoy. And while I certainly realize that I can celebrate any time (at least that's what everyone tells me)...really, it is not the same. I know I talk about a "birthday month" celebration, but THE DAY is the thing. It's the one day that's all mine (and Tina Fey's and George Strait's and Pope John Paul II's...) and I really, really wanted tomorrow to be wonderful. And I am sorry if I sound whiny because I should perhaps just be grateful I am alive and not be so hungry for more, but I sure would have liked not to be feeling so miserable on what is, to me, a really special day.

And I AM grateful for those of you who have already tried to make it a terrific day (cards, gifts and flowers have already arrived from Mary and Carol, Bonnie and Dave, and the Tobin family) - I promise to make the best of the day that I can. For when you get right down to it, how many more really do I (or any of us for that matter) have? 50 years - go figure.

My prayers and thoughts continue to go out to Aunt Barbara and Danny B., both recovering from major surgery and (so I'm told) doing well. There are plenty of us struggling back to health and I know we are all making every effort to do so in a positive and optimistic fashion (even when we don't want to!).

Blessings and Love to All - and Happy 50th Birthday to me!

Don't Speak

Three months ago I was sore and swollen, couldn't eat, couldn't speak, and drooled incessantly. My, my how far I've come...NOT!

Another week of radiation completed and while the side effects haven't abated, I think I am managing them a little better, partly helped by the fact that unless I absolutely have to I don't speak. The lesions are so numerous on my lips and tongue, and so painful when I do talk, that I find it's just better not to say a word (sound of children rejoicing in the background). Plus, my speech is difficult at best to understand (yeah, you try talking without moving your lips and tongue and see how you sound) and I get terribly frustrated if I have to repeat myself. At work this hasn't been too bad - there is much that can be done by e-mail, at least on a temporary basis. And at home, Warren and the kids are very understanding. What does get to me is not being able to make (or accept) calls in general - from my cousin Lysa (who I hardly ever get to really talk to); to my step-dad and uncle (to ask about their health); from my sister (who doesn't always want to know the details of my treatment process and therefore has trouble understanding why I can't talk to her for long); to friends I want to reach out to. As much as I love writing, it becomes less appealing when it's all I can do to communicate.

I did see my radiation oncologist Thursday, and he gave me a numbing solution to rinse my mouth with before meals so I could at least eat (they actually call it "Miracle Mouthwash"). It only lasts for 20 minutes or so, which is fine because I am not eating much anyhow (hard to keeping shoveling tasteless food into one's mouth). I have lost weight, more than I would have liked, but far from being emaciated. Thank goodness for Ensure! An interesting thing that I have noticed is how important texture has become for me. It's always been somewhat of a factor in my food choices (for instance, I like the flavor of mushrooms, but biting them? Nuh-uh), but now it is critical to choose a texture I can tolerate since I can't taste anything. Scrambled eggs and Kraft macaroni and cheese? Yes to those. Oatmeal and applesauce? Not happening. And I have no idea why!

I also saw the plastic surgeon this week, who I adore and who calls me "my love" and who, God Bless him, gave me the OK to exercise when I feel up to it (which, as you can guess, is not yet). Monday I see the endocrine surgeon for a regular follow up visit as well. And so it goes.

Tomorrow is Mother's Day and I remember well the last two weeks of my mother's life, my brother and I holding vigil by her bedside from early morning to late evening, sharing stories and meals with her until lucidity and life slipped slowly away, as did any negative memories of difficult times (isn't that how it should be?). She left me with so much - independence, compassion, a thirst for knowledge, a sense of style, an ability to laugh, and an unwavering belief in love (I always say of the woman who married 4 times that she was going to do it until she got it right -which she finally did with my stepdad Ken). I miss her every day. And I hope that when the time comes (not too soon please!) for Taryn to spend days at my bedside, easing my transition to the next life, that I will have successfully given her all that I received from my own mother and more.

And now...I shall speak no more.

One Week

What a difference a week makes. Last week I wrote that I had no major side effects yet (other than lack of taste and a dry mouth). This week...a totally different story.

Amazingly, right now I long for the days when my only problem was that I couldn't taste food. My poor oral cavity is so swollen and so filled with radiation sores that it is hard to speak, and almost impossible to eat. The lesions are everywhere - on my tongue (right where it brushes against the teeth when talking, drinking or eating), on my lip, on the inside of my cheeks - and they are large and deep. The pain is almost constant. My only consolation (and it's a small one because this really does SUCK big time) is that only one side of my face is affected (Patty, I don't know how your brother survived bi-lateral radiation). It took every ounce of toughness (some would say stupidity) I have to teach Sunday School today because every time I spoke it was torture. Thank goodness Taryn was there to handle some of the lesson (which was "Jesus Ascends" and don't think I wasn't wishing at times that I was going with Him!).

Oh, I get some temporary relief now and then (and by temporary I mean minutes of relief, not hours) by gargling and rinsing with various and sundry products and mixtures (hey, at least I can't taste how bad they are). I'm sure I could take some strong painkillers (God knows I have enough of those in the house) but I hate feeling out of it in addition to everything else and I don't want to waste what energy I do have lolling around in a stupor.

Unfortunately, I am having trouble focusing on just getting through day-to-day because I can't help thinking over and over how much longer I have ("I'm not even halfway through and it's already this bad?!" "It's only May 3rd, this is going to go on until the 27th?!" "I'm going to feel this way on my BIRTHDAY??!!"). I long to get back to yoga classes (I'm very bad at solo meditation), where focusing on the present seemed to come so much easier. I do see the plastic surgeon this week for a follow-up visit - perhaps clearance for exercise will be in the cards (if not, I want new cards!).

Deep breath. And another. And another.

And another.

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!

Takin' Care of Business

I am happy to report that as of Monday I am back to work! (OK is it pathetic that I'm so excited about that?)

I still have a long way to go recovery-wise, but my doctors all agreed that (with certain restrictions) I could go back to work full-time. Believe it or not, despite having been away for a little over a month, it felt very natural driving up to the Bronx and going into my office (well, except for the fact that I didn't have my bagel and tea while driving up there - that was kind of a bummer). No one stole my parking space; my office door still had my name on it; my ID badge still afforded me access to the terminal - I guess they're going to let me stay! My co-workers were wonderfully welcoming - they all greeted me at the front door, decorated my office with "Welcome Back" signs, and sent flowers (including irises, my favorite). So a very special shout out to Thea, Sheryl, Sandra, Ling, Gary, John, and Scott for making my first day back a great one.

This has been one of the weirder weeks of my life. Thursday I found out that one of my dear friends (who would like to remain nameless) had been in the hospital for several weeks (no one wanted to tell me because I was still recovering from the surgery). Then my stepdad called me Friday to tell me that HE had been in the hospital the last 2 weeks after falling off a ladder and breaking 4 ribs and his ankle in 2 places (again, he didn't want to bother me while I was just out of the hospital). And today I had to take Taryn to see her orthopedist because she has hurt her knee again (the one she had ACL surgery on) - she's on crutches for now and we're trying to get an MRI scheduled. Guess I'm the healthy one of the bunch.

I did get to have some fun this weekend though. My brother's birthday was Saturday, so Friday night he had a bunch of friends and family meet at a local bar he usually hangs out at. Warren and I went down to join the festivities and I treated myself to a nice, cold Bud Light (which I nursed like a sissy drinker but enjoyed nevertheless). I even "danced" - the owner asked me if I had any requests for the jukebox, so I had him play "You Shook Me All Night Long" by AC/DC and when it started I got up with my sister to shimmy around on my bad leg (yeah, I looked like Elaine on "Seinfeld" - maybe worse if that's possible). Yep, I paid for that poor decision the next day!

Today I saw my oncologist for the first time since January, for a regular check-up and to get started on a new hormone therapy (yeah, thanks for that big needle in my butt!). It is interesting that even the most benign (no pun intended) visit with the oncologist causes me to feel fearful and anxious, even when I know there is no bad news to be given (indeed, my blood pressure is always higher in her office than in any other setting, including when I was in the hospital or about to receive chemotherapy). I suppose it is somehow a recognition that when the bad news does come (as it inevitably will given the nature of my illness), it will come from her. No matter what - even on days like today when there truly is nothing negative that comes out of the visit - I leave there struggling to hold on to the positive outlook that I've carefully cultivated over the past 14 1/2 years of dealing with cancer.

Luckily, the Hershey's ice cream that MJ, Abby and AJ brought me tonight will more than likely bring that happiness and optimism right back. Time to take care of THAT business!

I Want Candy

Mmmm....mmmm....mmmm....mmmm...McNuggets!!

Yes, today was the day I finally had my long-desired Chicken McNuggets. It wasn't easy - I am truly out of practice when it comes to chewing. And (as you will see later) I do not have carte blanche to chew anything and everything I want. I got permission to TRY the McNuggets as long as I exercised prudence when it comes to further food choices. So another milestone in my ongoing recovery. And yes... they were amazing!

Yesterday, was a brutal day dentally. I visited the oral surgeon, who removed the braces (you know this can't be good when the kind doctor kept saying things like "Sorry this is so barbaric"). It took about 12 or so shots of lidocaine to fully numb my mouth (couldn't even feel my nose!) before he even began, so removing them was cake compared to that (those of you who get novocaine at the dentist know what I mean - right into the gums and the roof of the mouth). My mouth also only opens part way for right now, so navigating inside was a challenge and of course my jaw hurt wickedly from staying open the better part of an hour. Next up - extraction of the 2 lower front teeth, which went fairly quickly. Finally, he created a "temporary" bridge for the front using the teeth themselves. Of course, in the middle of doing this he informs me that he "hasn't done real dental work" in awhile, isn't sure he "has the competence to handle this hehhehheh" and hopes my real dentist "doesn't laugh at his work," all the while listening to the bonding instructions being given by his dental assistant. I had faith however, and he did fine, although, yes, I am still hurting today. And I must continue to eat mostly soft foods and liquids (no bagels, no steak, no candy...) until all the dental work is completed a few months from now, although I can now eat cold foods like ice cream again.

This was followed by a visit to my regular dentist for a check-up (one cavity, to be filled Friday) and the preparation of molds for fluoride trays, necessary while undergoing radiation. Again, the dentist and hygienist had to be engineers to try and get those trays into and out of my mouth, but they prevailed and did so with minimal discomfort to me.

The picture was taken yesterday, St. Patrick's Day (hence the wearing of the green). I figured you all could handle a few little scars and swelling and of course I wanted to show off that I am metal-free now. I still have some trouble speaking as a result of the numbness (not as bad as when the braces were on), usually with letters that require lips to be closed (b, p, m and f especially) since I can't quite do that yet, and don't know that I will ever be able to. However, most people (my doctors included) are able to understand me perfectly well as long as I don't use words like bubble, pepper, fluffy or marshmallow! On the upside - I am definitely drooling less without the braces!

Still a long way to go and it is hard to know what adjustments I will need to make temporarily or permanently. But a month past surgery I'm feeling pretty good about my progress AND my prognosis. I think I'll treat myself to Carvel tonight!

Drive

Ya know, this staying at home thing is not all it's cracked up to be, even with my expanded mobility. Although that's only because there is nobody to play with (especially now that Chris has gone back to Florida) - you're all at work!

The exciting part of my week has got to be the fact that I am now driving again! I ventured out for the first time yesterday, running errands around town (bank, post office, grocery store, gas station) and then today I took the big step of driving into NYC for my doctor's appointment. I didn't realize how much I missed my remote starter, my heated seats, my 1010WINS, my Sirius radio...and looking at all the gas prices while driving around! I thought I would feel nervous but instead felt perfectly comfortable and enjoyed the freedom of getting out of the house on my own. I've always enjoyed driving - how else does one commute 3 hours a day between Kings Park and the Bronx for 15 years? The only thing missing was my morning stop at Bagel Boss - that's still a couple of months away from being reality though.

My appointment today was with the plastic surgeon Dr. Levine. The man adores me, he can't believe how far I have progressed in such a short period of time. He took care of a few odds and ends (Alert: upcoming graphic descriptions may not be suitable for sensitive stomachs) -removing some stitches inside my mouth; cauterizing the tracheal wound that was oozing a bit (normal); same for some skin that had separated on the leg scar; removing the Doppler wire (he just pulled on that sucker - it looks a little like fishing wire - and out it came). We talked a bit about how much longer it would take for the last of the swelling (mostly under my chin) to go down and what to expect with respect to my ankle and leg (basically...still no yoga for awhile!). His surgical coordinator, Heidi, took a bunch of pictures (to go alongside those before and after Restylane photos in the waiting room I suppose!). I warned them that I better not see these on the Internet and Dr. Levine joked that he was going to post them on YouTube and FibulaSurgery.com (haha don't bother to check, I already did and it doesn't exist!). I don't see him again for about 6 weeks.

I must say, you have all done well stepping up to the plate with food/sauce suggestions - I've gotten lots of good ideas for making my minimal choices more exciting and tastier. And kudos to Chris for bringing me home Panera Bread's French Onion soup and for taking me out to Applebee's for their Tomato-Basil soup. It was fun to get out and enjoy a meal, however limited it was.

Warren and the kids are doing well, back into the routine of working, going to school, athletics, and social activities. I've been able (a couple times this week) to cook dinner for them and have a quasi-family meal (never the same without Emily there of course). In fact, we had a hilarious dinner Monday night with Chris, playing "Name the state capitals," a game that Taryn is particularly good at since we used to play it when she was very young, driving home from her sitter's house when I'd pick her up after work. It made for quite a few laughs and plenty of good memories.

You have all been so generous with your prayers that I'm hoping you can share some with 2 people recovering from surgery: my mother-in-law Carole, who just had eye surgery; and my friend Dan the Man's mom, who just had colon surgery. I am hoping they have quick, problem-free recoveries!

Blessings and Love to All.

A Little Bit Me, A Little Bit You

Coming up with creative ways to enjoy pastina (I'm thinking of adding some basil pesto tonight!) and looking forward to my nightly treat of chocolate pudding - does life really get any better than this? (Haha)

I continue to progress more quickly than expected. I ditched the crutches Friday (I had been using them sparingly since Wednesday anyhow) and while I still don't have full range of motion in my leg, I did go for a little walk around my neighborhood Saturday (trying to stay away from dogs and small children so as not to frighten them with the scars and metal!). I also had a doctor visit Thursday with the oral/maxillofacial surgeon - he didn't remove the braces, but did take out one of the rubber bands so I'm able to open my mouth a little bit more (maybe now it won't take me 45 minutes to finish a bowl of oatmeal). We also discussed what happens next - removal of the braces on the 17th (expected) and extraction of my two front teeth on the bottom (not expected, but necessary before radiation because they are loose). I was a little disconcerted about the extraction, mostly because they won't be able to do anything permanent for a couple of months and I am of course worried about what it will look like, but...again, they said it would be 3-6 months before EVERYTHING is done and it is all progressing as planned. Friday I will see the plastic surgeon for a check-up...I plan on begging him to let me have a McNugget. Just one. That's all I ask. For now.

I've done a little bit of visiting with friends, although I find I have to limit the time I spend with anybody (too much talking makes my jaw a little tired and my mouth dry). Our friends Mark and Cindy paid me a short visit on Saturday. They brought some homemade chicken noodle soup which I made for lunch for Chris and I (yes, you read that correctly - I made lunch for Chris and I, so glad he came up to help with my convalescence!). Then today, Chris and Warren took me over to Chris's parents house, where I had a blast sharing stories with his mom, Julie (who is a wonderful writer in her own right and a terrific, fun lady) and his dad Jim (who has a great sense of humor, and thought nothing of teasing me right off - wonder where those Sempey boys get it?). I wouldn't say I'm ready for a lot of visitors - but I really enjoyed this weekend.

Of course, the visitors I've been seeing most often this week are the UPS drivers and the local florists because you have all been amazingly generous and thoughtful. And did I mention my poor overburdened mail carrier - your cards have made me tear up, laugh out loud, and look forward to good times in the future. All have made me very appreciative of how much everyone wants me to get well, and it makes me realize how much we are in this recovery process together. Without you - I'm not sure I'd be doing as well as I am!

Silly little things make me feel good - putting mascara on (yes, the eyelashes are growing back); doing laundry; surprising someone with a short phone call. Don't get me wrong, there is no shortage of depressing moments - this surgery was HARD and the recovery is oftentimes overwhelming, especially when I find myself longing for something I can't have (yoga...a bagel...high heels...a cure...). But most of the time I find myself at peace, joyful, thankful, and smiling quite a bit.

Pastina time - any suggestions out there?