Monday, August 29, 2011

The Yellow Roses

I rode my first LIVESTRONG Challenge in Philadelphia last year. I rode as a supporter - not as a survivor. I was touched by cancer only by losing my grandmother when I was 5, my aunt, who kept her battle distant and relatively silent, who survived breast cancer, and a series of friends and mentors who fought cancer. Neither of my children, nor my parents, fought cancer themselves. And I was cancer-free. (Spoiler alert: So I thought.)

I was challenging myself physically, more in the spirit of LIVESTRONG as opposed to the literal mission. I pushed myself, but didn't make the cut-off to continue the 100 mile, as it was cancelled due to rain, and my back was giving out. But I crossed the general public line, and cried, because not only did I feel I failed my mission of 100 miles, but because I knew I'd achieved something. I was so moved by all the people cheering on the finishers, and I crossed the finish line at the same time as a survivor. I watched how he was treated, and handed a single yellow rose from a volunteer - a stranger - and in exchange, he embraced her like a long-lost family member and cried. And it was beautiful.

Ironically, after lunch, I returned to my bike, and someone had very purposefully woven a yellow survivor rose into the spokes of my front wheel - and there was no way anyone could mistake my bike for theirs - it was the only bike there with solid purple tires, Bianchi Celeste handlebar tape, and an obnoxious pink fuel box. Perhaps this person knew something I didn't.

My second LIVESTRONG Challenge was in Austin, where my son joined me, and we volunteered. I was to ride for my friend's father, who died of pancreatic cancer the day before the ride. And my heart ached for him as I had to get an "In Memory Of" bib for him. And I rode for friends and sponsors, dozens of them, who'd had me bring almost 50 bibs for the Tribute Wall. Again, in Austin, I didn't complete the 90 - we cut our rides short as we began to bonk and dehydrate more than halfway through - but we both put in 70 or so miles (not bad for a 12-year old on his first real road ride). And, again, we both were moved as our names were called and we were cheered for our fundraising efforts, even though we'd fallen short of our goal. And I saw the line of volunteers with yellow roses.

This year, we're already registered for the Austin Challenge. And I was hoping to volunteer on Saturday at the Philly Challenge. I knew I'd have to miss the ride itself, as that was the day I had to pick the kids up from camp. However, in July, I learned there was a more pressing matter I'd have to attend to Challenge weekend. I'd been diagnosed with breast cancer. My bi-lateral mastectomy was scheduled for Friday morning of the Challenge Weekend, and it would be a remote possibility that I'd get out on Sunday in time to get the kids from camp. Thankfully, I did achieve that goal - I'd was able to show the kids that I was okay, that I'd survived surgery, and that I was back on two feet. And, while in the hospital, I'd been sent yellow roses.

In October, I'm going to be riding with a very different mission, and one that I'd never DREAMED I'd be doing, let alone this early in life. I'll be riding for myself. Lord help me, I'm going to have to have one of the "Survivor" bibs on my back. And I'm going to be going through that Survivor chute, where my daughter (who is signed up to volunteer to pass out yellow roses, anyway) will be giving me my yellow rose.

I love roses. I always have. It's my birth flower. It's my favorite smell in the world. But it's the one rose that I never wanted to be given. And, at the same time, I know I'm going to be so proud to accept.


Please help me and my kids reach our goal for LIVESTRONG. We are trying to raise $20,000 by September, 23 so that we can achieve Ride for the Roses status, have the chance to ride with Lance on Saturday, and have one of our airfares & our hotel covered. If we meet the $15,000, we won't have the opportunity to ride with Lance on Saturday, but we would have one of our flights and our hotel stay paid for. This is a financial burden on the family, at the moment, (though one that, I think, we as a family need to do together) and being able to raise that kind of money for LIVESTRONG, as well as being relieved of the stress of how I'd have to pay for all 3 of us to fly to Austin would be tremendous.

Not to mention the fact that the money goes to a cause that has been invaluable to me since prior to my diagnosis, through to my surgery, and now as I face breast reconstruction surgeries as well as further treatment with my oncologist.

Again, please consider making any donation you can - large or small - it all helps and goes to a life-changing organization.

Friday, August 26, 2011

What I did over Summer Vacation...

(The soundtrack you hear when you first read this entry is Debbie Friedman singing "Mi Sheberach." Into the blog, you'll appreciate the significance.)

I had anticipated posting more frequent blog updates from the hospital, but I apologize - first, I slept through much of the time I'd have spent blogging, second, my laptop never left my hospital closet. In fact, this is the first time I've had the laptop on with a reliable internet connection.

So let's catch up... I think we last left off around Thursday. My cousin, who arranged for the beautiful rogueing ceremony described in my blog, "Adieu Sweet Amaryllises," happens to be a very talented photographer. She was also my birth coach for the birth of my daughter, so medical-related situations that involve embarrassing exposure of body parts is nothing new. I'd asked her to help me document this process. As some have suggested, I'm exploring the idea of expanding many of these blog entries, adding photographs, and putting together a book about my cancer journey. But, with or without the possibility of publication, it felt "right" that I document this process creatively. And that meant leaving a lasting memory of what had been two of my greatest assets that were being taken from me by cancer. Since my cousin had the equipment at home, I asked her to take a series of tasteful photographs the day before my mastectomy so that there was some kind of testimony that the real ones weren't just diseased bags of tissue, but worth missing. Obviously, since this is blogger, I'm not going to share the "Full Monty" shots, but I'll share two of the more publicly acceptable shots.

After the last photo was taken, I had to race back to Stamford Hospital as on the way up to New Haven, I'd gotten a call that a batch of lab work still needed to get done, including the injection for the sentinal lymph node procedure. Let me just say that any intimidation or fear about being topless in front of my cousin was joyous compared to the painful pre-op injection. I don't understand why, but there is no topical anasthetic applied before a large needle, with dye and lidocane mixed in, is injected at two depths into the nipple. There's the sharp pain of the metal, and then a burning surge. Suddenly, I didn't feel quite as badly about missing the nipples after the mastectomies as they were on fire. I think I'd been relieved if they'd removed them on the spot. I then had to massage my sore breasts and wait for 45 minutes to ensure the ink flowed well. I think they gave me the placebo lidocane, because it was not only very awkward, but I was not really that numb. Finally, I went in for the scans, and at first, I freaked out because it looked like a bunch of grapes was lighting up on each side. The tech explained not to worry - what I was seeing were the injection push sites and the route to the affected lymph nodes. In fact, as my surgeon confirmed after the surgery, only 2 lymph nodes on one side and 3 on the other had to be removed, which I understand is a remarkably low number.

After the procedure, I had the urgent need for ice cream. I called my Rock, and he and I went to the Dairy Inn at Stamford and I got a triple scoop waffle cone with chocolate, espresso and chocolate and pecan praline ice cream covered in chocolate sprinkles. I wasn't holding back. I needed cold, rich, decadent, childish and innocent comfort food. And I needed a big, manly hug. I just needed to be held. Those shots, and looking down at the swelling, and the enlarged and now darkened veins in my bosom finally made this experience real. It was going to be 12 hours before my breasts were being removed. There were no more appointments to make, doctors to meet, administrators to chase. There were no other known barriers between me and the surgery, now. I tried to make stuff up - I made up chores for myself at home that had to get done before I could step foot in the hospital.

My Aunt Susie stepped up and offered to take me on a pre-operative shopping spree - we went to Kohl's to pick up a bunch of inexpensive, light-weight, button-up shirts and comfortable pants that I could wear in the weeks following surgery that weren't restrictive and I could sleep in. I didn't want to look dowdy, as I knew I'd feel pretty blah and not quite sexy after the surgery, but I didn't want to get anything that was so good I'd feel badly about possibly bleeding on them. Thank goodness, we found a set of tops, and a nice loose bottom, that suited the needs perfectly, including two tops that were also presentable enough in case I had to leave the house to go to the office for a meeting or go out and didn't want to wear "house clothes." We grabbed dinner at a great little Asian-fusion restaurant, and then Aunt Susie took me home.

I walked into the doorway of my home - hardly clean enough, with major work to be done still, dishes in the sink, laundry still to be done - knowing I was going to have to see my dad at 5:15 am to get to the hospital by 6:00 am for the surgery. I went into the living room to hit the chores, but the next thing I know, I was waking up at 5:00 am and it was time to shower up. I hadn't even packed, yet.

I rushed to the shower, washed up, dried off, gave myself my full Mary Kay skin care regiment because I knew I'd be feeling grody after the surgery, so the fresher I went into it, the better, and got to packing. My dad showed up, and we hustled through the house, getting my stuff together and into the car and we were off.

We arrived, and despite the serious lack of coffee (I told the nurse it was cruel and unusual treatment, and surely a violation of the Geneva Convention, to force people to check in at 6:00 am and refuse them coffee), I was cracking jokes and in good spirits. Strength? I'm sure Doug Ulman and the LIVESTRONG folks would love to hear me say, "Hell yeah!" but realistically, it was procrastination and my last attempt to be in denial. I turned to my dad and said, "Fight or flight response is in - let's go to Aruba. NOW." Those were my last words as a civilian as I re-emerged from the changing room donning my paper operating johnny coat, nubby sock-slippers and hospital bracelets with my identification and allergy warnings. They told me to remove my jewelry, and I told them the only way my red string bracelet with my protective stones and my LIVESTRONG wristband were coming off was in the morgue. The nurse nodded understandingly and worked around the yellow silicone and spiritual strands. IV port was put in, questions were asked, pulse and blood pressure were taken, and then the doctors came in.

First, I met with Dr. Lief Nordberg, my plastic surgeon. He came in to "mark and measure" me for the reconstruction plans. I felt like a side of beef. This wasn't because of how he treated me, but I realized that every press of the marker indicated another area where I'd be sliced, have a cavity made, be contoured, etc. I was a person and an art project all at once. And right now, I was in the "You can't make an omelette without cracking some eggs" phase. Dr. Nordberg is very soft-spoken, very smart, and very sharp. He made his markings, exchanged some light humor with me, said he'd work to try and get the new cleavage the way I like my bras fit.

I was dressed, my father came back in, and Dr. Nordberg continued to explain a bit about what would happen. At this point, Dr. Donna Marie Manasseh, my breast surgeon, came in, looking incredibly fashionable and put-together for 6:45 am and about to head into surgery, to check in on me, meet the team, and greet me. She was polished, sharp, professional, but with a kind and warm smile. As we chatted, I think it became apparent to my dad why I fought so hard to have a team with whom I had 100% confidence. I wasn't looking for the "designer label" docs or facilities - but as the surgeries involved were described, and the complexity was revealed, the team had to work seamlessly and I had to entrust them with not just cutting out the cancer, but literally forming how I'd recovery physically, aesthetically and emotionally. This is the team with whom it all starts. You can't settle.

Even the anesthesiologist, who was the last doctor to come into the pre-op room, proved himself to be a rock star. Dr. Park introduced himself and explained that he'd be using a newer technique to put me under (forgive me - I can't remember the name - I'll get it and update the blog), but instead of traditional narcotics, the anesthesia is administered via two blocks on either side of the spine, and by using Dilaudid via IV during the procedure, following the procedure and then via pill as part of my release, not only would I not endure a long recovery from general anesthesia, but I wouldn't experience the nausea and many other side effects patients complain from, not to mention that there are some reports that this technique helps specifically with cancer patients in "killing" cells and reducing recurrence rates. And, if that weren't confidence-boosting enough, he then asked me what I wanted to listen to in the Operating Room as I went under and as I was waking up. I requested Sarah McLachlan's "Angel."

I said goodbye to my dad, toddled off to the O.R., which I remarked looked nothing like "Grey's Anatomy," and was a bit taken aback as I watched one nurse count what appeared to be hundreds of metal torture devices, a small, blue vinyl-covered table with a sheet over it, lots of light, and a step stool. Dr. Park excused himself, leaving me with nurses with no faces - only masks, who told me to take a seat. I reluctantly tried to follow their instructions, but part of me felt like it was my first time jumping off the high dive, and I wanted to climb down despite any possible teasing I'd endure. Dr. Park returned with his iPod and speakers, smiled, and said he was all set. The music started, I relaxed, and I leaned over the table next to the bed as I felt them clean part of my back.

And that was it. I don't remember the injection, I was never asked, that I was aware, to count backwards. That's all she wrote.

The next thing I remember was being on my back, in a room with light, under lots of warm blankets, being told by another mystery nurse that my father was in the waiting room with my friend, Sally, and if she could come in, since she had to leave. I didn't even remember that she was coming! When I tried to say, "Yes," nothing came out of my mouth - I had no voice! Which scared me, as I'd told Dr. Park that I sing, and I started to panic. The nurse put her hand on me and said, "Don't worry - there was a breathing tube - it's totally normal - your voice should come back soon."

I tried to look at Sally when she came in, but I don't remember being able to do that. But I heard her voice, and I saw her face in my mind's eye. She explained she had to leave, as surgery ran a couple of hours longer than planned. I guess she and the nurse saw the concern in my face, as it was explained that nothing went wrong - everything was fine - it just took a little longer than they'd planned. Sally asked me what she could do, and I was able to ask her to sing Debbie Friedman's "Mi Shebeirach" to me. As I came into further clarity, I was welcomed by Sally's voice. With that, Sally had to leave, and I started to fall back asleep. My father, and my Rock, came back to visit me, and soon, it was time to get to my room.

I got word from my friend, Lisa, who manned my Twitter and Facebook pages while I was unconscious, that there was a flood of messages and posts for me. I was jonzing to start Tweeting and texting, so I did.

I was wheeled into a single room right near the elevators, and the first thing I thought of was how grateful I was not to have any roommates. Clearly, the only child in me was waking up. I was wheeled in, and my parents, my Aunt Susie came in, and there were already some flowers in the room. I noticed a big digital clock on the wall, which I knew was there to call out times of death, but instead it confused me - it was almost 5pm! I was supposed to be out of surgery by 12:30pm and in my room closer to 2 or 3! Then I remembered the nurse telling me in recovery that things ran late.

My spelling wasn't perfect yet, though.
But enough people knew where I was coming from.
I turned to my father and asked him where my Guinness and DiNardo's pizza were. He explained the Guinness was in the drawer of the nightstand, but the pizza wouldn't have lasted. I was also immediately reunited with my Blackberry, which I was told, must have missed me terribly as it had been crying and wailing for hours. I don't even remember the exact number of posts, emails, Tweets and texts I had, but there were a lot.

Nurses came in and out, checking me, poking me, injecting me, putting information up on the little white board. I was told I could only have a liquid meal for dinner, and that it would be right up. I'd been eating ice chips, though I don't remember how and when I started eating them. I still wanted chocolate, though.

My Rock came in, and with his deep, soft voice, tended to me, asked how I was doing, told me how great I looked (a lot of people remarked that I didn't look like I'd just come out of surgery, to which I gave thanks to Mary Kay), and held my hand. The doctors came in to see how I was doing, give me a report - the lymph nodes didn't set the Geiger Counter off, which is a good thing - doesn't rule out chemo/radiation yet, but a step in the right direction - and to check my wounds. The doctor took off the bra and removed the dressing. I couldn't look down. I asked my Rock to tell me how bad it was. He told me that the incisions weren't as bad as he'd envisioned them, and that I wasn't as flat as he'd expected. The doctor said all looked good, and that he'd dress me back up and let me get to sleep.

Dr. Park came in and said all was well, and if I was nauseous or anything. I said, "Nope! I feel pretty good!" And clearly, he was very pleased with himself. Job well done.

After my drugs were administered, I'd been walked to the bathroom in an attempt to pee (failed, I might add) and wash up, I fell asleep. For an hour. When another nurse walked in with beepy things and druggy things, poked, prodded, pumped and who knows what else, until I fell asleep. For an hour. Wash, rinse and repeat, and my first night in the hospital yielded virtually no sleep, nor did it yield pee. Until the morning nurse advised me that if I didn't pee soon, they'd have to administer a catheter. No hand in a warm cup nor running water could have had me peeing so fast. I was given a sponge bath, had my drains drained (weirdness) and I was told I could order breakfast. I excitedly ordered french toast, 2 fruit cups, chocolate milk (finally - my chocolate), and cranberry juice. Sadly the french toast wasn't much to write home about. But that chocolate milk hit the spot!

I took a long walk, and upon my return, my nurse said that my Blackberry had chirped. I picked up my Blackberry, and saw there was a new mention on Twitter. I knew some friends had been mentioning to Lance that I'd been ill and to give a shout-out, but I figured it was a sweet attempt. But this was unreal.

And the weeping began. I was crying so hard. I was overjoyed. I was inspired. And I was terrified, as the reality hit again that I'd obviously endured a serious enough surgery with serious enough cancer that Lance Armstrong took a moment to think about me and send me that Tweet. I was honored and touched. But terrified. I let the fear subside, thanked him for his graciousness, and told every living creature I encountered in-person and online that Lance Armstrong tweeted me. Cancer, what?

My parents came back, bringing with me my framed LIVESTRONG Manifesto that the kind folks at LIVESTRONG Headquarters in Austin had signed for me. It was to stay with me wherever I went for treatment, rehabilitation, etc as a reminder of who I have behind me. We set it up on a chair, and then on the foot of the bed, so I could see the words that make up the mantra, and the names and signatures of all those that devote their lives to help people like me fight. (It is now at the foot of my bed at home.) While there, the case manager from the hospital came in and congratulated me that I'd be discharged. I thanked her and asked what time in the morning on Sunday I should be picked up. She shook her head and told me, "No, no. You're being discharged today." The nurse was in the room, along with my parents, and we looked at her and asked what in the hell she was talking about - I'd just had my IV pain medication administered, and it was less than 24 hours before I was even close to being wheeled into recovery. She said that's what the doctors and insurance company told her. I called my breast surgeon and she said that there was no way in hell any of the doctors who worked on me told the case manager that. Turns out, the insurance company asked to have me discharged on Saturday, as soon as possible. But, clearly, that wasn't going to happen. (They wanted to, though... ) Doctors and nurses came in and out, and it was confirmed that I'd be discharged sometime Sunday morning, in time to be driving with my Rock to pick up the kids from camp.

My parents left, and I was left alone for a bit, though some visits from a friendly nurse helped. Then, my friend from summer camp the summer before 4th grade, Sara, came to visit with her mom. She brought a lovely sunflower arrangement, chocolate (thank goodness!) and a big smile and hug. Originally, Sara's mom was going to work some Reiki, but I guess I was "up" enough, and there was enough hustle & bustle, that we didn't get to that, but that was ok. I was still riding very high on the Lance Tweet, and I was just so glad to see Sara again. Aside from the amazingness of having someone from so far back in my life coming to see me, someone whom I always very highly regarded and was grateful for, it was the 2nd time in a year that we saw each other. Coincidentally, we were both on the same flight to Austin last October when Zach and I were flying down for the LIVESTRONG Challenge. I'd FourSquared that we were at the airport, and Sara responded that she was there, too. After some tail-chasing, we ran into each other in the food court and met up again in the waiting area at the gate.

We caught up, chatted, laughed, and smiled - Sara is expecting, which was so exciting - another full-bred Young Judaean! After some time, my mom came back, and Sara and her mom had to head back home. We hugged again, knowing we'd see each other the next day at camp as we picked up our munchkins.

"Orderly's great! Gimme chocolate cake!"
My aunt came to visit, too, and stayed after my parents had to leave - they were helping to finish clear up some things in the house that I didn't get to do before surgery. While my aunt was there, the nurse came in and reminded me to order dinner. Now, breakfast and lunch had kinda been disappointing. (Note to self: As good as it looks in the menu, remember you are in a hospital and avoid ordering lemon salmon as a meal while staying in the hospital. The drugs didn't cause nausea. The salmon? Different story!) She and I toiled over the menu, and we figured that there were two meals that could either really be stinkers or be safe. So we ended up ordering one meal for me, and the second as a visitor's tray. That way, she could snack on something, and if one meal were too sorry to eat, I'd have backup. One thing we knew was to order the chocolate cake. Which, of course, when it came to placing the order, I had forgotten. So when the trays arrived, we sat down (well, I sat up) to eat, and we had to call them back. As two die-hard chocoholics, there was no being polite and just happily chalking it up to forgetfulness. There would be chocolate cake. Or someone would die. And there was chocolate cake. And it was good.

My nurse, Lorna came in, and recognized from my aunt from her tenure at the hospital. Not that Lorna wasn't nice, but I think having a more personal connection from that point made her even more attentive and a little more pleasant. After the cake, my aunt had to head home, and I was on my own, with my Blackberry as my connection outside of my room, my Manifesto at my feet, and the pain meds by my side. As I'd discovered the night before, the hospital is the worst place to get a good night's rest. I decided to plug myself into my Blackberry and play my "Cancer" playlist I'd started a couple of weeks earlier to ease nerves in waiting rooms. Sure enough, the music lulled me to sleep, and I slept through most of the night, save a couple of blood draws and a port switch (Unfortunately, the port put into my left hand pre-op had become inflamed and painful. Still is - it's the only part of me that genuinely hurts.).

The next morning, I was jonzing to move. I woke up, and before any nurses drew fluids, checked vitals, or did anything, I slipped on my second johnny coat so I didn't pull a Sipowicz and flash folks in the hall, and I started toddling through the hallway. It was the morning of the LIVESTRONG Philadelphia Challenge, and I knew a number of friends & LIVESTRONG Leaders were thinking of me. I know that as I prepped for my walk, they were lining up in the chutes. And as the Tweets started flooding in about listening to Lance give his pre-ride speech, the century riders setting off, as I did a year ago, I started my Challenge. The Stamford Hospital Surgical Ward LIVESTRONG Challenge. My nurse, Lorna, sat in the hallway doing paperwork and raised an eyebrow as I chugged past her with a "Good morning, Lorna!" The custodian saw I was on a mission, and he moved the garbage bin out of my way as I turned the corner with a, "Looking better than yesterday," to which I responded, "It's the LIVESTRONG Challenge today! And I'm walking with my friends!" as I raised my Blackberry to him. I cruised into the elevator bay and decided to add a "hill" to the mix. Instead of turning right back towards my room, I turned left down the Stamford Hospital's skyway, connecting the surgical ward  to the pediatric ward. I walked down the hall, feeling the light and warmth of the sun beaming on me, and I touched the door. I turned around and walked back up the hall (and, yes, it has an incline), past the elevator bay and stood in the doorway my room. I got another Tweet of excitement from another friend in Philly.

I smiled, and turned away, continuing to put in a second lap.

This time, my first nurse with the cute top and Lisa Loeb glasses gophered up from the nurse's station and said, "Go, you!" and I walked a little faster. Lorna was still sitting doing paperwork and she said, "You're going for another lap?" I said, "Yep! After all, what would Lance do?" She smiled and said, "You're still high from that Tweet from yesterday, aren't you?" I said, "It's either the Tweet or the drugs, but either way, I'm flying." I turned the corner as the guy who weighed me the day before, who had to practically tape me into place on the oversized scale, was leaving another room. "Damn, you're up and about today!" I smiled from ear to ear and said, "I'm going home today!" and I kept going. I did another sky walk lap and this time I didn't hesitate at my room. I just walked past my door and back past the nurse's station. "You feeling a bit out of breath?" Lorna asked. "A bit. But that's ok. My friends are going to ride in the rain today." She said she'd meet me at the end of my walk to help me clean up and get ready to go. I thanked her and kept going.

By the time I got to the elevator bay. I was a bit breathy. But, I figured, "What the hell," and I threw in a last sky walk lap. I took it easy, as it was becoming very hot in the walkway, and I shuffled back into my room. I plopped down and ordered breakfast.

Lorna had gotten caught up with other patients, and I got impatient, so I went to the bathroom and washed myself, washed my face, got my clothing out of the closet and changed out of my hospital kit and into my civvies. By the time Lorna came in, all I needed was to have my hair done, as I couldn't brush my hair or reach the back of my head, and wait. My breakfast came, and I called my ride, aka my Rock, and he was on his way. We were going to get the kids from camp and then settle in at home. Breakfast arrived (I'd smartened up - I know even the hospital couldn't mess up eggs, and baked goods), I chowed down, and just in time for my ride to arrive.

He warned one last time that he thought it was a stupid idea to pick up the kids from camp and to have someone else do it, but after the hell and grief the camp gave me, even knowing all my cards, this year, I didn't want to ask anything more of them aside from the ability to park on-site because I knew there was no way I could do the school bus. I was not up for fighting for favors and being beaten down by a bunch of administrators on ├╝ber ego trips. They'd already been awful leading into camp starting. With that, we packed up, I was wheeled down to the car, and we hopped in, headed to our first destination - a pharmacy so I could get my pain drugs and other meds as by the time we got to camp, it would be time for my next dose of Dilaudid. We went, and after some time, the prescriptions were filled, and we were on the way.

Let me explain something about my Rock. He drives a big truck. He actually needs it, it's not a compensation thing, but it really is too big for him to handle. We tease him about the wake of dead mail boxes and run-over landscaping light fixtures that trail behind his truck. He probably needs to wear glasses, but he refuses to because he doesn't look cool. So asking him to be careful of potholes was dumb. I should have taken the tact that you do on mountain bike trails - keep your eyes ahead and do not think about the obstacles like trees and things you might crash into. Wouldn't you know, he managed to find every single pothole to drive over between Stamford, CT and Poughkeepsie, NY.

Finally, we pulled up behind 2 school buses, which I knew were from the parental parking pick up spot, and we entered camp. Unfortunately, the pharmacy stop took a little longer than planned, and we arrived 45 minutes later than we'd wanted to, but we hadn't missed the BBQ yet. We pull in and park near the tents, and the kids charge the car. I'd warned them in advance I probably couldn't hug them, but we'd do air hugs. They helped me out of the car and immediately tried to pull me in 30 different directions to show me every inch of the camp and what they did there. I had to remind them that I was still doped up, and, oh yes, I'd gone to the camp for 4 summers, several year-round programming events, and worked there for a session. My son went with our ride to get his and my daughter's stuff while my daughter escorted me to the "chorshah" (grove). Of course, it had rained, and I didn't see the mud below the grass, and within a couple of yards of the truck, I slipped. Fortunately, I didn't fall. Unfortunately, it meant flailing my arms about like a motorboat, causing My Rock to come running back, scolding me for coming to camp as it was a stupid idea after my surgery, etc. I grit my teeth, blurted out, "I'm fine," and let me daughter walk me to the crowd. There was Sara, and her husband whom I also know from our YJ glory days, and her mom. We chatted a bit, but I knew we couldn't stay too long, and my Rock really just wanted to get the hell out of dodge.

My daughter explained that all of her arts and crafts stuff were still in "Omanut" (arts & crafts) in the old staff house. This was a building that I lived in, hid in, and know very well. I also know the road to the staff house. It's a long, dirt then semi-paved, windy, hole-riddled steep path that even on my mountain bike would make my teeth rattle. I asked my kids to see if a staff member on one of the "gators" could get her crafts projects. My son came back and the director apparently, said that if one of the gator drivers felt like it, I guess it would be ok. (Of course, the correct answer would have been, "Sure, let me just buzz them on the radio." But, chas-v'chalilah that should happen, right? I'm just saying... ) My kids went to one of the gator drivers, who were simply sitting, chit-chatting and chowing down on BBQ on the edge of the field, and she said, "Well, you guys have legs." My daughter came back, and I'd had just about enough. So, I calmly hobbled over to the other side of the field, with my daughter in tow, and said, "Excuse me, am I correct that you said that you weren't going to be able to  drive down to get my daughter's craft projects?" She said, "Yes, I mean, it's just a short walk." (It's not - I want to say it's at least a mile round-trip, including a shifty uphill). I nodded, and calmly explained, "Because, (lifting my top enough to reveal the 4 drains now filled with blood and liquid and part of the compression vest) you see, I just had both my breasts removed on Friday thanks to cancer, and I made arrangements to be released this morning so I could drive almost 2 hours when I should be in bed so that my kids wouldn't have to worry about how their mommy was and to bring them home. So it would be a real help if one of you guys with the gators could drive down to get her stuff. I mean, you wouldn't want me falling, blowing incisions, and having to explain to my friends who are here who know what I just went through, that I have to go back to the hospital, sans the kids, because I slipped and fell getting to the staff house, would you?"

The staff member I was speaking to was silent, but the other gator driver stood up and said, "I'd be happy to. What's your daughter's name and where's her bin?" I thanked him graciously, turned and walked back to the BBQ to get food for the road and for my Rock, leaving the staff member who suggested that we have legs behind, with head hung.

Yeah. I played the "cancer card." Shoot me. Wouldn't you have?

We loaded up the car, after some accidental "hide & seek" between the boy child going to get his lizard, the girl child getting a bag she forgot, the boy child going to the bathroom, the girl child disappearing, etc., and headed home.

Finally, we pulled into the driveway, and I walked up the stairs, into the front door, where I was greeted by two overly-loving kitties, purring, and rubbing my legs so feverishly, they almost tripped me. I plopped down on the sofa, watched the kids and my Rock fill the space I'd cleaned so hard with mildew-stinking camp gear and other stuff.

The 'rents came by, my Rock kissed me goodbye (I was sorry to see him leave, frankly), and we ordered in. I trudged up the stairs to my bed, which had formerly been something out of the show, "Hoarders," made myself a nest of pillows, and was tucked in by my kids. At which point, my cat, Raouw, who hadn't been farther than an inch from me since I returned home, set up his vigil in my bed, which he keeps to this day.

And that's what I did for my summer vacation.


Tuesday, August 16, 2011

Adieu, Sweet Amaryllises...

On Thursday, after hours of calls, shuttling back and forth, fighting with office administrators and insurance lackeys, I finally made it to a plastic surgeon for my breast reconstruction consultation. Just before I went into the appointment, I called my cousin to chat a bit. Aifa Cat, as she goes by, helps to run a booth at the New York Renaissance Faire, and she mentioned that if the kids were home, this past weekend was a kids-go-free weekend. Unfortunately, the kids weren't home yet, however, a thought crossed my mind. I've always enjoyed displaying the corseted girls at the Faire. I've been going to the NYRF since I was 10 years old, and I've spent close to 18 years showing them off. So, I mentioned to Aifa Cat that it would be fun to take the "girls" out for a last "Huzzah!" at the Faire. Kind of like taking a dog for a final walk before putting them down for old time's sake. Aifa Cat thought it was hysterical, and it was a done deal - especially since I was just told I wasn't needed at the bike shop on Saturday.

Friday night, I got my favorite Renn Faire costume together - a costume I'd designed for myself when I was 21 with leftover material from my recital ball gown I'd had made for my Senior Recital at Oberlin and from 50 or so costumes I'd had to make for the Oberlin Gilbert & Sullivan "Three Princess Project." It was based on Spanish/Portuguese Rennaisance Costumes and portraits of Dona Gracia Mendes, the personae I adopted for it and based on my relative.

I last wore it 3 years ago for my son's birthday party, adapted with accessories which took it from a royal costume to a pirate queen. He was really into pirates, and the Renn Faire had a bunch of newer pirate-based features. My cousin helped us with a place to leave stuff, group tickets, and permission to bring our own food, as we had to bring kosher food with us. One of my son's friends came, which meant a tremendous lot to him, because his father was fighting cancer. That afternoon, his father came to the Faire after spending a very long hospital stay. It was one of his first, and ultimately his last, days out of a hospital bed. It seemed right that I take that costume with me.

The costume had served me well, earning me Best Costume at Faire awards, as well as many A+ grades for my cleavage.

I made the drive, and chose to wear a t-shirt and jeans in the car with the intent to change in the parking lot. I'd figured that changing into the costume wouldn't be any more difficult than changing in and out of a cycling kit. I was wrong. Especially when the costume that had served me so well all these years decided to literally break while I put the corset on. The corset itself cracked and several of the hooks and eyes were damaged in the last cleaning, and the loops which held the lacing that covered the hooks and eyes broke. So there I was, lying in the backseat of my car, topless. And alone. Thankfully, I'd had my LIVESTRONG yellow pashmina, and I wrapped that around my top and rushed to the Faire. I texted Aifa Cat to find out which boutique had the absolute cheapest corsets so I could get a top and, as soon as I entered the gates, I rushed to C.S. Designs.

Thank goodness, they had a great black velvet corset and a top that worked very well with the skirt and my costume. I finished getting dressed and headed to my cousin's booth, Lundgaard Productions - Guild Hall & Guild Pins. I realized, after chatting with her and her friends, that this was the absolute first time that I'd gone to Faire alone. I'd never gone without family, a boyfriend or a posse of friends. I remembered going with a group of high school friends - some of my favorite people from Fox Lane. My best friend, who just moved to Chicago, another dear friend who now lives in Boston, another who now lives in a very different world in Los Angeles, and Aaron Cass, four months before he'd be dead. I remembered the picture of us we had taken, arms around each other, the girls and one guy wearing costumes & accessories, Aaron smiling awkwardly. I remembered the drive we took down, where we got lost, and my costumed male friend hopped onto the roof of a car while everyone else stared at a map, ignoring my directions from memory.

Then, I remembered why I was there. This wasn't about hanging out with friends. This was about bidding farewell to my bosom. This was about parading the girls, soliciting awe, head turns, and one last chance at my natural endowments to turn heads. Not any scars that might be coming my way. Not because chemo may take away my hair and leave me bald and eyebrowless. Not out of pity. It was my last chance to grasp the attention of strangers, forcing girlfriends and wives to smack the arms of eye-wandering boyfriends and husbands, with my  natural D-cups overflowing. So, with that in mind, I set off through the Faire.

Sure enough, there were at least 3 "boyfriend slaps," a number of "Huzzahs" from merchants, a handful of cast members who, passing by, bowed their heads to me, greeted me, but with eyes very clearly focused on the chesticles, and several remarks from women who were aghast, but secretly jealous, that they simply couldn't understand why anyone would wear a corset displaying that much cleavage. I so badly wanted to turn back, call them on their remark, and say, "No, you can't understand. But allow me to explain..." But I didn't. I kept walking, smiling at the irony that these women weren't really horrified, but, after assessing them, they were upset they couldn't create the "shelf" (though they were trying with what they could pull together as a costume) and yet, secretly, I knew that they wouldn't want my ill-fated cleavage. I was displaying sick breasts, with the right one already invaded with an alien batch of cells consuming it. They didn't know what was below the surface.

Aifa Cat had told me to meet her back at her booth by 5:30 for a special show. I figured maybe she'd gotten us seats at the joust in the stands instead of where the crowd usually sits, or something. I grabbed a "Beesting" - a combination of mead and hard cider, and saw a large group of Ren Rats hanging around the booth. Aifa Cat then told me to follow her to the back of the booth, and there, I was greeted by a large circle of men, which was strange, especially since one had his hand on a grill. Then, one by one, each rogue walked towards me with a rose or two (a mix of fresh, yellow roses and yellow or black feather roses - for LIVESTRONG), seductively paying me compliments, and handing me the rose. This continued until every, very sweet man, had presented me with a rose. As you can see from the photos, I wasn't entirely sure how to react. It was rather warm, and I was so embarassed, in a good way, that I was perspiring and just really didn't know what to say, so half the time I had a very strange look on my face.

But, inside, I was so blown away that Aifa Cat had arranged this, that these guys were doing this, and how sweet the whole rogueing ceremony was. I'll let the photos speak for themselves.

If you'd like to celebrate by proxy with me as I defy this disease by riding in the LIVESTRONG Challenge in Austin, TX in October, please consider making a donation to LIVESTRONG here:

Brian presents his rose

As does Eric...
And John...
Atreides made quite an impression
Huzzah for the Stripper!
Geof presented a very heartfelt message with his rose
Raith's eyes and smile just made me happy
As did his presentation
Aifa Cat presents me with a custom made "F*CANCER* pin she had made for me
A closeup of the pin
Getting pinned

And then the signings began...

And for some, continued...
And went on...

"Eat At Joe's"

Geof asked if he was signing too low... Did it matter at that point?

Robin was so sweet...

As was John

I bent over so John had some more material to work with...


Let the cousin-on-cousin fantasies begin! LOL!

So that's how we bid Adieu to the girls.

Sunday, August 14, 2011

Back to our regularly scheduled Fundraising...

I've got a blog post brewing about my own personal cancer journey - just waiting for some photos - so in the interim, let's steer back to why I started this blog in the first place.

Here's what's up and coming with events in Fairfield & Westchester Counties to benefit LIVESTRONG:

If you cannot attend, please let your friends and family know! If you would also like to support our fundraising efforts, please make a donation here:

    Monday, August 8, 2011

    "Welcome to Our Ool"

    When I was in 5th grade, my best friend was an Israeli girl named Sigal. This was because in 5th grade, no one else in my class was willing to admit publicly that they were my friend. Hell, that was the status quo until we graduated 8th grade. I think some of them may be willing to admit that they were my friend, now, but back then, no way. You'd be branded a freak. A mutant.

    I'm certain Sigal was the only one who was willing to admit it because she didn't know any better about the the fact that the stigma of being friends with the "corroded" girl would mark you for life. Then again, Sigal transferred out the next year, so she went relatively unscathed by being my friend, socially.

    As a result, I went to her house for what seemed to be a daily play date. Her mom would make us falafel and chips (which, for years, I thought she made from scratch until I went to Israel and stayed with them for a free shabbat when I was 18 and I learned that her mom's falafel, in fact, came out of a box). And in the backyard, they had a pool. With this sign:

    Unfortunately, it seems that my ancestral gene pool did not share the same philosophy as Sigal's backyard pool. And it would appear that it is my father's side of the family that subsequently peed in it.

    Today, I got my genetic testing results. This testing determines whether or not my breast cancer is a hereditary trait, and if the possibility of recurrence as well as developing a slew of other fun cancers is greater than the average Joe.

    Now, genetically speaking, I'm a mutt. On my mother's side, we have non-Jewish German (my grandmother, remember, converted to Judaism) and Russian Jewish. But no family history of breast cancer.

    On my father's side, we have primarily Spanish-Portuguese Jews, and that had been the case for hundreds of years, until my grandfather decided to marry a German Jew. He was the black sheep of the family, I understand that family members stopped communicating with him as a result. This was a huge insult - to stray from the Spanish-Portuguese community. And who knew? His future generations would pay the consequences of his hereditary betrayal. It is his side of the family that has the history of breast cancer, seemingly, from my father's mother's side of the family.

    I'm BRCA2 positive for a deleterious mutation, which means that gene that should safeguard my body against these kinds of cancers is broken. Defective. Yes, it's now official - I'm a mutant. Only this mutation doesn't qualify me to be one of the X-Men nor a member of the Brotherhood of Mutants.

    It's a genetic tattoo. I've been branded "6174deIT," like a tattoo on the inside of my arm. Despite the Sephardi lineage, genetically, I'm an Ashkenazi Jew with a death sentence. I've been put into that line out of the cancer cattle car. The question is, what is my out? How do I escape? And how do I save my children?

    Here are the "choices" I get to make, and the fates I've damned my children to. Call me Sophie:
    • If I do not have a bi-lateral mastectomy, I have a 12% risk of a breast cancer recurrence within 5 years of the first.
    • It is recommended that I have my ovaries removed ASAP, preferably by age 40, and without question, by age 45 as I have a 27% risk of ovarian cancer by age 70 if I do not have them removed. And there is no real way to screen for ovarian cancer until it is well developed.
    • I have a 7% risk of pancreatic cancer by age 80, though, if there is pancreatic cancer in my family history, which will be tough to prove as many were lost before we could find out, that risk can be higher.
    Therefore, while I haven't consulting my surgeon, the most logical, detached choice I have is radical, bilateral mastectomy and having my ovaries removed within the next few years.

    And now, onto my children's choices. By age 20, they should be genetically tested and then they begin the roller-coaster.
    • For my daughter:
      • She has an 84% risk of breast cancer, as well as all my risks.
      • She will have mammograms done annually from between ages 20-25 for the rest of her life.
      • She'll be presented with the option, at an ungodly age, to consider a voluntary double mastectomy.
      • She'll be asked to take our family history into consideration when it comes to the age at which she wants to start a family - she will likely not have the luxury of deciding to wait until she's in her 30s without taking serious precautions, as by 40-45, she will likely be told she should have her ovaries removed.
    • For my son:
      • He has up to an 8% risk of male breast cancer.
      • He will have to have breast exams starting between ages 20 and 25.
      • He has a 20% risk of prostate cancer by age 80.
      • He has an increased chance of contracting other cancers.
    I'm a Sephardi trapped in an Ashkenazi body. And a mutated one at that. And what's worse is that I've likely passed on this tainted genetic legacy onto my innocent children.

    What have I done?

    Thursday, August 4, 2011

    The Rainbow Connection

    It's funny. There are times and moments and experiences in our lives that change the way that we see or experience things in the world. Perhaps it's the pessimist in me, but it often seems to be the negative ones that rock your lives and change your outlook. Virginity and other forms and innocence aside, it was the abrupt and shocking death of my friend, Aaron Cass, when I was 17 that shoved me straight out of childhood/adolescence and into adulthood. And from that point on, I saw friends and loved ones as temporary fixtures to whom you cling and have to share everything because you can never guarantee that there will be a tomorrow when you can express how you feel. That was the moment that I was terrified that the people I loved most would, not could, but would, disappear in a flash and I'd be left alone, again.

    There are very few "positive" experiences that most of us layman experience that can completely change us. Perhaps I'm a terrible parent, or the circumstances related to my marriage at the time, but the birth of my children didn't do that for me. It pains me to admit it, but it's true. Perhaps it was a little more with one child over another, again, very much related to the circumstances of my disastrous marriage, but it didn't shake me to the core. It didn't cause a new view on the world to erupt from within me, forcing me to discard my previous outlook.

    I've come close to those epiphanies from positive experiences - some of the rides I've done where I've been broken and I've come back through to finish have neared that phoenix rising, but not the same. Close, but no cigar.

    Usually, it happens in a flash. Within moments of the experience - the second I dropped my water on the ground when I heard about Aaron's death... the moment my friend, Lisa, told me my friend, her fiance, died... you know the second that change happens as it's marked permanently in your mind, and the moment you see everything differently.

    This cancer thing, though, is proving to be just as surreptitious emotionally & in the way it's changing my life as it is organically. Yes, that second when I got the call in my friend's car sitting in the parking lot at Hunan Spring on Hope Street in Stamford is indelibly tattooed in my head. But the change... it changes daily. Maybe you're noticing that change in my blogs... one day, empowered, the next, broken. And part of me wants to apologize for the seemingly Rica Bright & Dark nature of these entries, but I can't apologize. It's what's happening.

    For a couple of days, my friend, Jody, nailed it - it felt like I was thrown into outer space, and my mind was separated from the rest of me suspended in some sort of stasis. I was completely disconnected and numb. And I'm not entirely re-connected. As though each wire that was ripped apart in my mind is slowly reconnecting. But the circumstances and events of the day either welds those connections solidly, causes the wires to cross terribly, or pulls them back apart.

    Even the music I listen to - the songs that brought smiles - change. "The Rainbow Connection" reminded me of that childhood innocence before - when I was 5 years old, and my parents and I watched Kermit sing on a log on the big screen, piling popcorn in my mouth, and the greatest ill in the world was when I had to go to bed before M*A*S*H and having to wear what my Mommy made me wear despite my protests. It was before my Grandmother died. Before I saw my mother as not only human, but as a very flawed being and not who she pretended to be. Before I saw my father cry. And now? It's a song of sorrow, reminding me of a friend lost, of an innocence lost, and that we'll never find it. That I'm not longer a dreamer.

    Slowly, as the re-connections continue, I'm sensing strange changes. The realization that something huge that has changed the rest of my life, and me, is slowly being revealed as insidiously as this cancer has invaded my breast and my life. As each revelation takes place, as those connections are re-established, they are rejected by my mind's eye. I'm feeling less and less myself and I have those moments where I look in the mirror and I simply don't recognize myself. I'm no longer the "me."

    When the man I love touches me, I don't respond. I push him away. I feel utterly repulsed - not by him, but myself. Like I'm being betrayed internally and there is someone else in my skin that's rendered me disgusting. And I don't want him to see that alien entity surface. And then I feel terribly guilty because I know he still sees me, and as much as I want to keep that sense, I feel like I'm lying to him about who I am. In that moment, I'm not me. I'm a cancerous tumor with legs. I'm to be discarded. Cut out. Not loved and adored.

    I'm not longer the lover or the dreamer.

    I'm the tumor.

    Goo goo g'joo.

    Wednesday, August 3, 2011

    Sucker punch

    Yesterday was my meeting at Dana Farber Institute in Boston, MA. Aside from the cancer issues, there was another personal issue that raised tension and anxiety (and, sadly, I was right to be anxious, as it ended up with the 2nd worst case scenario I'd dreaded). I'd gone to Dana Farber hopeful for news and solutions, and that's how things seemed.

    Fortunately, a friend came with me whom I respect and admire and, over the past couple of years, has shown a tremendous amount of support and consideration - she's an old friend's mother, and in many ways, reminds me of my grandmother thanks to her voice, her accent & European ways, etc. I arrived well ahead of schedule - traffic was much lighter than I'd expected - and despite a humid walk that, thanks to nerves and the weather, caused me to perspire, we arrived with ample time. We decided to sit and eat in the cafeteria, where I met a delightful little 4-year old who, in line with the cashier, thanked by compliment of her pretty, sparkly shoes with a BIG hug and said that I was a pretty, sparkly lady. (Dear lord, please say that she's not the cancer fighter - those angelic eyes, embracing arms and adorable face are undeserving of this hell!)

    The first consultation was with Dr. Esther Rhei, the surgeon. I was blown away by her! She was so clear, assertive, confident, knowledgeable, patient and on-the-game. There was not a moment where I thought, "Hmm... " Everything she said and advised seemed so on the mark. She was respectful of what I wanted, but realistic about outcome. As I'd mentioned before, the biopsy on the masses below the left & right nipples was not performed because when we tried to find them via sonogram, the technicians at Stamford couldn't find them. Dr. Rhei, however, wasn't comfortable not having the biopsies done before the main surgery, as the pathology could change the surgical approach (mastectomy vs. lumpectomy, etc). She asked if I'd be willing to stick around after my second consultation for a quick sonogram to see if they could locate the masses (assumed to be papillomas), which I said was fine.

    The second consultation was with a medical oncologist (aka the chemo & hormone doc), Dr. Jennifer Ligibel. To say her pedigree is impressive is an understatement, and she had some really interesting approaches, not only with chemo but with the hormone treatments, as we're dealing with an estrogen-reactive cancer. She also mentioned a clinical trial which I'd be an ideal candidate for. So far, I was hearing good things, and feeling like I was in really good hands.

    My friend went to the waiting room while I went back for the sonogram, which shouldn't have taken too long.

    The first technician came in and couldn't find anything on their side. He got another doctor, and they were able to successfully locate the mass in the left breast, but not the right. But something seemed odd, and they asked me to wait in the patient waiting room and not get dressed yet. I waited... and waited... and another technician came in and said that Dr. Rhei wanted to run another quick set of mammograms on the right side. I disrobed again, and the boob-squishing commenced (though not so painful as before). I went back to the waiting room and, a while later, the technician came in and said they wanted to do another mammogram, a little closer to the right nipple. Again, I stripped down, grabbed onto the machine, and got photographed again. A while later, they said I could get dressed, but not to leave, as Dr. Rhei wanted to speak to me and my friend before we left. By now, it was well after 5:00 - we'd been there for over 4 hours.

    Dr. Rhei brought us to her office, sat me down on the couch, and got very serious. She explained that the mammograms taken yesterday revealed a "tail" of "calcifications" that went from the end of the crescent shaped lesion already identified that led from the confirmed cancer all the way to the sub-aereolar mass on the right side. She emphasized that even if that mass were just a benign papilloma, the trail of calcifications is "concerning" and, depending on the biopsy results, could determine surgical options, or lack there of. As far as she's concerned, there's no option but to perform biopsies on the left to see if that's cancerous and if the left breast is in play, now, as well as on the right to see if that mass is cancerous or not. My fear is given all of this, I'm likely looking at bi-lateral mastectomies. The cons are obvious (though it could mean nipple reconstruction - don't even ask at this point - it's so weird that I can't even grapple with the concept enough to discuss it. Yeah - it's just as weird as it sounds). The pros? New boobs, snatching fat and tissue from my gut and butt, no mandatory radiation and greater likelihood of being left with even boobs.

    However, it wasn't exactly what I wanted to hear at the end of a day when I felt very sure of my path, my doctors, my treatment, and I felt confident in where things were going. Now, it was another body blow. I got another one in the cab ride home upon the return to my car, which just made things even worse. In a sense, though, I became so enraged and hurt on the way home that instead of dwelling on the news I just got (as I explained to my friend, my life is never a matter of choosing A or B, it's a matter of having to choose A, B, C and all degrees in between, and then someone throws a Z into the mix just for fun).

    Regardless, I have been completely drained since my return from Boston. Physically, I still haven't woken up. Mentally, I'm just spinning. Emotionally, I'm just empty.

    And, of course, Connecticare told me their Medical Director rejected the referral to Dana Farber saying I could get equivalent care within the network. Oh, yeah? I'd say a string 2-4" long of calcifications that were missed, etc kinda disproves that. So Dana Farber, thank goodness, is sending their findings, and their recommendations, which differs enough from the local recommendations and should provide enough basis to prove that, indeed, in my case, Dana Farber is the place to be. But, yet another battle to fight to suck the life out of me when I need it the most.

    This is empowerment?

    More curveballs, hoops to jump through, a sucker punch and being kicked by an old friend when this dog is already down.