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.
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 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.
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 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 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 über 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.
And that's what I did for my summer vacation.
I'll post updates in a bit, but this post was long overdue. In the meantime, please support my goal to reach $5,000 by end of day today, and $15,000 by end of September by considering a donation to my LIVESTRONG Challenge Account: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=442672&supId=291580630