Tuesday, May 19, 2009

The Journey Begins

Posted Oct 11, 2008 9:49pm

The mythologist Joseph Campbell describes the archetypal hero’s journey as an ordinary person faced with an extraordinary quest. The result is discovering one’s greatest strengths by facing one’s greatest fears. I’m packed for my journey, carrying your love and support, confident that more guides await me in the forest of fear. Preparation started on Sept. 25, when I had a second oncology opinion from Dr. Kristie Bobolis at Sutter Roseville. Dave and I knew right away that she was “Dr. Right.”

Warm, knowledgeable and supportive of good nutrition, she was in alignment with my intuition that 6 sessions of chemo is overkill (my word), and she recommends four. She used the back surface of my lab report to draw pictures of how cancer cells can travel, and explained the reasoning and effects of the chemo. She also recommended that I have a port implant, to prevent the irritation of being needled for a year. Ugh. It means 2 more surgeries, but now I understand how I’ll appreciate it in the long run.

Dave’s office is 5 minutes from this oncology center, which will be a blessing once I start treatment on Oct. 16. During the several hours of each session, he will be able to travel to & from the office without the ordeal in Sacramento, which is at least 30 minutes each way in congested highway traffic.

After an hour Dave left, and Dr. Bobolis and I continued our conversation about her approach to care as well as my philosophy and state of mind regarding this adventure. I found it fascinating (a kind word) that in countries where research is supported by government, rather than the pharmaceutical wizards, there is a more sensible rein on health care costs. Doctors are paid fairly without the meddling of insurance companies that suck up financial resources. Best of all, foreign research found that cancer/chemo treatment can respond to much shorter periods of time and lower dosages – with results that are just as effective as the long, expensive protocols supported by American drug companies. Go figure.

So with Dr. Bobolis as my Guide on the next phase of my adventure, I feel confident to don my armor, mount my unicorn and trot into the deep forest as I travel along the road of healing.
The next day I flew to Rhode Island for a ten day vacation, divided between my family and a trip to Cape Cod with several close girlfriends. My brother, Mark (“Maahk” in Rhode Islandese) and his wife picked me up at the airport, welcoming me with an extra raincoat, umbrella, a chilled bottled water, a crisp apple fresh from the orchard, and Deb fussing as always to provide comfort to a weary traveler. The feeding had only just begun.

They safely delivered me through the rain to the place we called home from the time I was 16, where my Dad still lives with his wife, Muriel. After hugs and kisses all around I received my next of many commands over the next few days, to “Sit, eat…” Who could resist? I savored a “leftover” dinner of roasted chicken, their garden-fresh green and yellow string beans and cauliflower, a sweet potato stuffed with walnuts and cranberries, and homemade apple pie.
My bags were over-packed in anticipation of the unpredictable New England weather, so it took three of us to drag them upstairs to my room. Despite the comforts of home, my sleep was unbearably restless the first night. The air was heavy; typical of the region, there was no breeze. In no time, the dense humidity made fast friends with my hot flashes and they ganged up to bully me into a drenching sweat. Bleary eyed, I foraged around and found a window fan that aided in my defense. It was certainly noisy about its victory, and its rattle dangled me just at the brink of deep sleep. But by the next night temperatures had dropped considerably, and the autumn chill soothed me into dreamland for the rest of the week. Ahhhhhh!!!

The weekend at my Dad’s was mostly cloudy and drizzly – characteristic of early autumn in New England. Mornings brought an occasional break in the clouds; the air was delightfully crisp and fresh. It smelled of rain and moist leaves, with a subtle lingering scent of smoke that had curled from the chimneys the night before. Rather than dampen the mood, it was comforting to bundle up a little, shielded from the morning mist. The house is on a hilltop, backing up to a vast lawn and a 50 foot granite cliff. The area is densely wooded, each home on about an acre of lush landscaping and brilliant green lawns, the result of incessant humidity and frequent rain. It’s hell on the hairdo, but great for the foliage.

My early walks started down our long cobblestone driveway, and I carefully avoided skidding on the slippery surface of the moist granite. Cradled in a thin layer of moss, they are embedded with history, worn slick from centuries of trampling by countless footsteps, animal hooves, and rattling wheels - from carts and wagons to the horseless carriage. In our lifetime, we polished them with rubber treads from generations of cars, trucks and grandchildren’s tricycles bouncing across their durable surface.

Dad retrieved each stone during the ‘60’s when they were abandoned in the rubble as old streets and walkways in the area were torn up to make way for the new. On weekends he would venture out early in the morning in his green Rambler station wagon and scavenge through the ruins, loading as much as the car could carry. Returning home with his salvage, we three kids helped unload the hefty rocks into piles that he would later artfully lay into partially submerged, even rows. The final result is an impressive sweep of about 2000 square feet of cobblestone leading from the house to the circular blacktop area of the driveway, all of which is lined with flower beds and old oak trees.

Every meal was delightful – whether planned or serendipitous. One of the finest treats of the weekend was Muriel’s clam zuppa, a tomato based sauce made with a bountiful mixture of fresh seafood. It is served over a mound of spaghetti, and accompanied by lots of Italian bread to sop up leftover liquids, a big salad and plenty of wine all around. What made it especially delectable is that my Dad and Uncle (who joined us for dinner) had gathered the quahogs (giant clams) by the bushel on their last clam dig of the summer, and then froze them for later feasts. We gobbled down the smaller clams raw on the half-shell as appetizers, and I could smell the ocean in every lemony slurp. Over the evening a variety of relatives stopped by for a visit, succumbing to the temptation of Muriel’s fluffy-crusted homemade pies – a key lime and a custard crème to die for.

It saddens me every time someone tells me they don’t cook, especially those that are searching for a natural way to heal. Not only is it essential to physical health to eat fresh, whole food, but the process of creating a meal is a ritual that nourishes the soul, celebrates life and demonstrates gratitude for each ingredient. My grandfather used to appropriately call packaged meals “dead food.” We are losing the art and ceremony of nourishment as kids are brought up not knowing why there is a stove taking up space in the kitchen. Even if our busy schedules don’t allow the luxury of cooking each meal from scratch, so much is lost by not taking some time during the week to prepare ahead of time, to have wholesome, home made stuff we can “grab” instead of microwaving a plastic clump filled with god-knows-what.

In stark contrast to the hubbub at home, I visited my Mom at the nursing home each day, bringing her tasty fresh snacks and juicy gossip. Although her diabetes is under control now that she can’t sneak the foods that contributed to this problem, she is not able to walk, and does not like sitting up in a wheelchair. By nature she prefers solitude and chooses to stay in bed watching TV rather than participate in any social activities. The staff at her facility is wonderful, and she obviously enjoys cheerful banter with them during their frequent visits through the day as they tend to multiple needs of the residents. She was thrilled to see me, and I was happy to find she is feeling feisty enough to get argumentative. When I visited last Christmas, the previous doctor had her so drugged that she was incoherent and couldn’t even feed herself. Only after she was hospitalized and nearly died due to a painful infection, about which she couldn’t communicate, did they take her off all the meds and restore her back to mental normalcy.

Every moment was spent with family in various combinations until Tuesday afternoon when they packed me off with clean laundry and enough leftover clam zuppa for eight people. Lest I go hungry for a moment, Deb managed to squeeze a ziplock full of her freshly homemade wine biscuits into my bag before she dropped me off at the airport to meet a friend arriving from Sacramento.

I had brought my luggage to my friend Maya’s earlier in the day, as she lives five minutes from the airport, and spent some time as a volunteer body in the class she was teaching for up and coming yoga instructors. She had another class that evening, but picked us up at the airport and delivered us to college hill in Providence to explore until she was done. The pristine architecture around Brown University and RI School of Design is hundreds of years old, a mixture of brick, stone and Victorian structures that are breathtaking. In the late afternoon, deep golden sunlight speckles across their surface through the shelter of ancient lush trees, and flowering shrubs cuddle snugly against the low wrought iron fences. As nightfall softened the skies and chilled the air, we found a charming Chinese restaurant on the upper level of an old worn-brick building, and we warmed up with the exotic spices of our steaming meals. Hidden in the subdued light of golden sconces, we were inadvertently entertained by the colorful stream of college kids that flowed in their flirtatious packs through the streets below.

After a little browsing through the shops, Maya gathered us up for the long, dark drive to our rented house in Falmouth (“Fal-mith”) on Cape Cod, where 2 more friends had arrived the day before. The house was set deeply behind the trees along the unlit winding road, so they turned on the high beams and waved us in! Our residence for the week was a 100 year old barn that had been converted to a 2-story-plus-a-basement home. We each claimed our favorite spot among the 5 bedrooms and settled in. Even though it was late, they had waited for us to have dinner, and the clam zuppa provided yet another feast. So began several days of succulent dining, adventure and merriment – and lots of pictures.

Always the first one up in the morning, I savored both the chilly air and a steaming cup of coffee as I read my meditation card in the slate-tiled sun room that faced the ocean. Although the beach was not within walking distance, we had a beautiful view, and the expansive lawn led to a thick tangle of forest. The highlight of the lawn was a rose-colored hydrangea that had been pruned to the shape and height of a tree with such precision that it formed an arch over two gently weathered Adirondak chairs. [See gallery.]

The forest floor is splattered with marshland, paved with a narrow boardwalk for dry passage. Beyond this is a raised gravel road that buries an old railroad, running by miles of open marshland. Our morning hike introduced us to an array of brightly colored berry bushes, from vibrant red and purple to pearlized black, and a tree covered with tiny berries of teal and chartreuse that looked like miniature Easter eggs. Along the way we nibbled rosehips the size of marbles, plucked from between the last of the fading wild pink roses. Our only regret was not having one more day to just hang out at the house, because from that moment on, we were on the go!

On Wednesday our travels took us to breakfast in Falmouth before Maya had to leave for another class. We continued on for exploring in Mashpee and dinner in Hyannis. For the most part, weather was on our side. A house-rattling crack of thunder woke us to heavy rains early Thursday morning. It was just enough to give us a taste of temperamental New England weather, and by 10:30 the sun was shining. After breakfast in a quaint oceanside restaurant in Woods Hole, we drove the forest-lined highway to Provincetown on the tip of the Cape.

This historic tourist spot is now characterized by its artists and gay population, so everything and everyone is colorful and intriguing. After browsing the fantastic shops and galleries that lined the narrow street, as usual, we picked a restaurant at random, and as usual, we were not disappointed. One of the side dishes was a carrot slaw with a magical quality that casts a spell on anyone who tastes it, causing them to uncontrollably blurt out, “Oh my GOD, that is AMAZING!!!!”

With an irresistible combination of flattering enthusiasm and relentless begging we persuaded chef to share the recipe. He came out to present a copy to each of us, and autographed each one in the expectation of its increased value when he becomes famous. Photo op!!! With all our cameras assigned to our flamboyant waiter, we shuffled the chef across the room and huddled around him to pose in front of the chalkboard menu boasting his daily specials.

The last leg of the trip was another two hour drive to Salem on Friday, to visit the infamous graveyards and buildings, as well as the October “Witch Festival.” This event was much smaller than we expected, but it was certainly in line with the theme of day. We entered a softly lit room in the main mall that was fully decorated for Halloween, and found about a dozen of the town’s best psychics and a handful of vendors that had congregated to set up their mystical posts. The folks we met were charming, the wares were unusual, and each station was uniquely enchanting.

Although one day is certainly not enough to see everything, we crammed in as much as we could. A note to travelers – the “Witch Museum” looks great from the outside, but the “tour” is dumb. Spend the $8 on one of the fabulous cocktails at the Hawthorn Hotel instead (the “Vampire’s Kiss” has sweet, scary swirls of red, and the ghostly pale Chocolate Martini was the best in the state!). Then enjoy the trolley tour of the town – including the House of the Seven Gables!

The cooler weather in northern Massachusetts had coaxed the earliest fall colors from the trees, and they were the perfect seasonal frames for the memorial statues and old buildings. [See gallery.] We waited out a cloudburst while having a scrumptious lunch at the reputedly haunted Hawthorn Hotel, which felt more cozy than ominous. The high point of the day was an old-time photo place that was based on haunted themes, rather than that of saloon girls. In preparation for the Salem jaunt, Kat had made each of us flowery witch hats, and they fit right in to the costuming for our portraits!

We usually returned to the house by 9:00 pm; my sides still hurt from laughing at all our antics, but I’m pinky-sworn to secrecy. I can share that the language classes became a standard feature of the evening’s entertainment. As a RI native, I was the official translator, and would get a barrage of, “How do you say… [in Rhode Islandese]?”

Essential expressions for the traveler:

Fuh gedaboudit: i.e., forget about it, or “Don’t even consider it.”
Nah fuh nuthin: Not for nothing. Introduces a topic you’d rather not bring up, but will do so just to rub it in, such as, “Nah fuh nuthin, but it woont kilya ta cawl ya muthah maw than once a ye-ah.”i.e., I hate to bring it up, but it wouldn’t kill you to call your mother more than once a year.
Bub'bla: a drinking fountain
Buh-day'duh: a starchy vegetable; the sweet variety is known as a yam.
Chow'duh: soup made from clams
Da-boat'a-yuhz: the both of you
Flah'ridder: A warm southeastern state where New Yawkiz love to retire
Hah'ruble: Horrible. Used interchangeably with Tev'uble (terrible).
Jeet?: A question asked prior to offering a meal (Did you eat?)

Two of the ladies left early on Saturday, so Kat & I stayed at Dad’s that night, with a 20 minute commute to the airport on Sunday, rather than hours from Falmouth. Ironically, he and Muriel spent the weekend in another area of Cape Cod, so we could leave early the next morning without waking anyone. We spent the afternoon touring downtown Providence, with stunning walkways by the canal and a 6 story shopping mall. Nah fuh nuthin, but it should be illegal to have both Godiva AND Lindt chocolate stores within a hundred mile radius of each other, not to mention in the same mall. Fuh gedaboudit – if you don’t resist, you get on the scale the next day and feel haahruble!

Providence has recently undergone architectural and cultural transitions that attract both locals and tourists. At sunset we were enthralled by the waterfires, which entertain and educate thousands with a different ritual each week ( http://waterfire.org/about-waterfire/welcome). An extravagant sound system delivers music that is relevant to each ceremony, and the final result is an experience that stimulates all the senses. This particular event was called “A Thousand Ships – marking the bicentennial of the abolition of the transatlantic slave trade.” The organizers passed out 1,000 water bottles to the spectators for the “libation ritual.” As one of the actors poured water from a silver bowl into the canal, we all emptied our bottles into the waters, each representing a slave ship voyage that left from RI.

This was followed by a torch lit procession to different sites that had significance in the slave trade. Among the vessels in the water is a gondola featuring a fire juggler – and of course, there are several links on YouTube, including these:


My brother invited us to stop by after the show, and he’d “Throw on an extra steak.” In Rhode Islandese, this means a banquet awaits. New Englanders love seasonal decorations, and Deb’s enthusiasm is unsurpassed. Every surface was decorated - including the centerpiece, placemat and napkins. Not only did we have yet another spectacular meal, but we were entertained by a screaming sword, blinking pumpkins, dancing witches that swung from the ceiling, and a yakity skeleton whose motion sensor reacted with the bellow of a spooky monologue.

We caught an early flight on Sunday, and it was good to be home with enough time to unpack, pick up some groceries and rest up for the busy week ahead. It was a rejuvenating vacation on many levels, and I felt refreshed and enthusiastic to get back to work on Monday.

My decision to transfer chemo care to Sutter Roseville was reinforced when I met with the oncology nurse this Thursday morning. Laura is well informed and compassionate, and told me I would “love” having a port. Not only does she encourage good nutrition, but was she was also able to provide information on supportive vitamin supplements during chemo. This is in stark contrast to the staff at the chemo center in Sacramento, which I learned is only located in the same building as Sutter, and is actually a different company.

Another surprising bit of information is that because herceptin is part of the treatment, the other drugs are not as brutal as the standard chemo, and not everyone loses their hair. There are a lot more possible side effects of the chemo, but everyone responds differently. My hair will at least thin, so the scarves will come in handy, but in any case, I don’t think I’ll bother with a wig. I was also under the impression that I couldn’t color my hair for at least six months. The latest advice is to use gentle products, because the new hair is fragile. Just as chemo doses are not as strong as they were, good hair products now have fewer damaging chemicals. “All things in moderation” seems to be the common theme.

The Roseville “infusion room” is arranged in small areas of 3 chairs each, in close proximity to the nurses’ stations. I asked her if it was really necessary to have company, or if I would be fine on my own. Although it is necessary to have a driver, she agreed it was “really boring” for anyone to sit and watch me for 3 hours unless we had a lot to talk about, and I could relax alone or watch a movie on my portable DVD player. This was great news – with Dave’s office close by, I’m fine with being delivered and picked up later. Maybe I will just relax and not do anything for a few hours. Now THAT would be a new experience!

Yesterday morning I went to Sutter Hospital in Sacramento for the final surgery for what I hope is about a year, to have a port implanted in my chest. This eliminates the need for hunting for veins to poke for chemo, meds, blood draws and similar gruesome procedures. I feel like a bionic woman.

As always, it was an exciting day in the pre-op room. My nurse was a fast-talking, sarcastic bundle of energy from New Jersey; we spoke the same language and kept each other laughing. The beds are separated only by curtains, the staff is friendly and thorough with their explanations, so conversations blend into an uplifting cacophony. The lady on the other side of the curtain was in her 70’s and being prepped for a hip replacement by another team. We had chatted in the waiting room, and she was quite a firecracker. When her nurse stopped in to see if she needed anything, she loudly requested, “…a tall young Italian with a nice butt!”

Everyone involved came in to check my name and birth date, offer reassurance, review what they will be doing and ask if there are any questions or concerns. My surgeon this time was Dr. Lee, who is Dr. Guirguis’s husband, and he was just as wonderful. Dr. Aurora was the anesthesiologist, and I felt reassured just hearing her name. I told her it sounded like the name of a goddess, and Dave said it meant that when she started working on me, I’d see the Aurora Borealis! Mary, the coordinating nurse that shows up for every procedure, sat on the bed, held my hand during a cheerful chat, and highly encouraged me to take my narcotics after this one. She gave me a big hug before she left, and the surgical nurse was next in line. She held up a syringe and announced with delight that Dr. Aurora had sent me a dose of “happy juice.” Not every anesthesiologist does this, but it sends you off to dreamland before being wheeled off to the OR. When all her paperwork was done & we were ready to travel, Dave gave me a goodbye kiss just before she added the happy juice to my IV. Mmmm. Nice.

It was a longer, more delicate procedure than I had anticipated, which makes me extremely grateful that I was not conscious. Some doctors do this with just a local anesthetic, which seems like torture. The aftermath is not as uncomfortable as the lumpectomies were; it’s like having an achy shoulder joint, since it’s just below my collarbone near my shoulder. I have a low dose of pain meds, taking about half the recommended amount. I feel a little ditsy, but I can stay awake and relaxed enough to stay put, catch up on the updates, and enjoy a few chick flicks. Is this “relaxation” thing what normal people do? It’s quite lovely.

I still don’t know where this journey will lead, and as I get down to the wire, it is getting a little scary. I had a dream the other night that I went in for chemo and they gave me a giant martini glass filled with a lemony yellow liquid. I told them I thought I wasn't supposed to have alcohol while I was doing chemo, and they said it was OK, this was my treatment (chemo is referred to as a "cocktail"). The next night I dreamed they gave me a giant yellow pill that looked like a SweetTart. I was concerned that I couldn't swallow it, and asked if I could just take a bite, because I didn't like taking drugs. I'm not sure what the significance of all this yellow is. Maybe it's the healing energy of the third chakra? Sounds good to me!

Thank you for all your calls, notes and emails, for adding me to your prayer circles and Reiki circles and sending so much love and compassion. Your love and support carries me every moment and has made it all worthwhile. May it come back to you a thousandfold.
Love, Laurie