“Move, as far as you can, as much as you can. Across the ocean, or simply the river. Walk in someone else’s shoes or at least eat their food. Open your mind, get up off the couch, move.” Anthony Bourdain

I’ve been writing this blog for a few months. I decided after being so overwhelmed with the content I scrapped the whole piece. A lot has occurred over the last few months and instead of talking about the good and bad I will leave you with photos from the last few months of travels.

*2018 TRIPS

Turks and Caicos

Ice castles of NH

Brooklyn x 4

40Days Baptiste Course

Spain

Tahiti

Hiked: Mt. Tom, Mt. Avalon, Mt. Field, Mt. Hale, Mt. Tecumseh!

Mexico

Maine x5

Hawaii

Japan

London

California Desert Springs

Joshua Tree National Park

“The world is a book, and those who do not travel read only a page.” Saint Augustine

HAWAII

“That it will never come again is what makes life sweet.” Emily Dickinson

 

“For once you have tasted flight you will walk the earth with your eyes turned skywards, for there you have been and there you will long to return.” Leonardo da Vinci

*JAPAN

“The best thing to hold onto in life is each other.” Audrey Hepburn

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crosses on your own.” John O’Donohue

*LONDON

“The life you have led doesn’t have to be the only life you have.” Anna Quindlen

 

“We wander for distraction, but we travel for fulfillment.” Hilaire Belloc

*CALIFORNIA DESERT HOT SPRINGS/JOSHUA TREE NATIONAL PARK

“Grief never ends, but it changes. It’s a passage not a place to stay. Grief is not a sign of weakness, not a lack of faith. It is the price of love.” Author Unknown

 

“If ever there is a tomorrow when we’re not together…there is something you should always remember. You are braver than you believe, stronger than you seem and stronger than you think. But the most important thing is even if we’re apart…I’ll always be with you.” Winnie the Pooh

After all the pages of beauty I guess I should update you all on my status in Cancerland. I’m so tired of cancer and the aftermath that it leaves behind. A few months ago I walked into an appointment with one of my oncologists when it came time to switch chemos, again, “I don’t want to do this anymore.” With a little bit of a push I reluctantly started the medication and within 2 weeks the doctors took me off due to the toxicity in my body. I’ve been on the chemo since and guess what, IT’S WORKING! However, I have this annoying lil new baby in my brain that brings me to craniotomy #3, coming 1st week of May. Can’t wait…I also have an immense of swelling in my brain that I need to start IV medication for.

One last update on my broken back situation. I broke my back in 4 places while traveling Hawaii in October. I had spinal surgery at the end of November and have been prepared for a 6 month recovery and a constant rotation of fentanyl, oxycodone and muscle relaxers. It’s not that I don’t want to live, I don’t want to live like this. Im trying to stick with it to buy me some more time. But living in this state is not what I wanted for my life.   The poem below was given to me by someone special and feel it needs to be included here.

* Mary Oliver Wild Geese:

you do not have to be good.

you do not have to walk on your knees

for a hundred miles through the desert repenting.

you only have to let the soft animal of your

body love what it loves. tell me about despair, yours and i will

tell you mine.

meanwhile the world goes on.           

meanwhile the sun and the clear pebbles of the rain

are moving across landscapes,

 over the prairies and the deep trees, the mountains and the rivers.

 meanwhile the wild geese, high in the clean blue air,

 are heading home again.

 whoever you are, no matter how lonely,

 the world offers itself to your imagination, calls to you like the wild geese, harsh and

exciting over and over announcing your place in the family of things.

*All the best to my friends, family and supporters. xo

 

 

 

 

 

 

“Strength of character lies in performing the drama of life with courage and confidence, practicing self-reflection. And self-control under any circumstances.”  Daisaku Ikeda

“Twenty years from now you will be more disappointed by the things that you didn’t do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” Mark Twain

Where to begin…lets get the fun stuff done first! TAHITI! Mom and I, we went, we saw, we conquered! We lived in a dream for over a week. For as long as I can remember I have wanted to travel there, but never believed it would ever be possible. As the days in my calendar turned, I came to the week of departure, and saw this written there, “I can’t believe I’m writing Tahiti in my calendar.” As our flight out of Boston took off, I had no idea what to expect, except beauty and adventure. Bring it on FP.

French Polynesia, is a beautiful combination of Polynesian culture, historic ceremonial sites, azure water, thriving reefs and tiny islands. French Polynesia is made up of 118 scattered islands and atolls covering an area about the size of Europe and is divided into groups of islands: the Society Islands Archipelago, Windward Islands, Leeward Islands, the Tuamotu Archipelago, the Gambier Islands, the Marquesas Islandsand the Austral Islands. Among 118 islands and atolls only 67 are inhabited.

On this National Geographic expedition we visited these islands/atolls/motus: Rangiroa, Fakarava (lots of jokes about the pronunciation of this island), Makatea (I thought this was a made up place from the movie 6 days 7 nights!), Huahine, Bora Bora, Raiatea, Taha’a and Papeete. French Polynesia was one of the last places on earth to be settled by humans and European explorers. The first island to be settled was the Marquesas Islands around 200 BC and in 1769, the British explorer, James Cook arrived.

In 1803 the King of Tahiti was forced out of Mo’orea. In 1812, many Polynesians were converted to Protestantism and the French Catholic missionaries’ arrived in 1834. In 1842 the French took over the islands and the Marquesas Islands. The first official name for the colony was theEstablishments in Oceania. It wasn’t until 1888 that Tahiti became a true colony after the Leewards War. In 1940, French Polynesia recognized the Free French Forces and many Polynesians served in World War II.

The French and the Polynesians were unaware of Japan’s motive to make the islands Japanese possessions. In the end French Polynesia remained free from Japanese invasions and in 1946 Polynesians were granted the right to vote. In 1962, France chose the Moruroa atoll in the Tuamotu Archipelago as the new nuclear testing site. Tests were conducted underground after 1974. In September of 1995, France stirred up widespread protests by resuming nuclear testing. The last test was in 1996 and during the same year that France announced its intention to comply with the Comprehensive Test Ban Treaty and no longer test nuclear weapons.

INTERMISSION

On our first day in French Polynesia, we arrived onto the Rangiroa atoll, meaning “Vast Sky”. Rangiroa is one of the largest atolls in the world. An atoll is described as “a ring shaped island or reef formed from coral.” As we flew to the atoll, Mom and I were mesmerized by what we were seeing from above. We have never seen anything like this. It was on this last leg of a very long journey from Boston, that I realized how special this trip would be for us.

After boarding our expedition vessel, the ship Orion,we set out for first snorkeling trip on the biggest atoll in the world. It’s on this very first adventure that I would swim (definitely not on purpose) with black tip reef sharks. I was only sort of freaked out, but surprisingly kept my cool. We saw manta rays, turtles, nurse sharks and a just a magical underwater world of life. Within five hours of arriving we were already snorkeling in the Pacific Ocean and with sharks!

Later that day at our first de briefing by Expedition Leader, Jimmy White, he reminded all 87 of us that, “This is not a cruise. This is an expedition.” After only a couple days we realized what he meant. Don’t get me wrong it was one of the most amazing times of my life and it was still luxurious and comfortable and fun and joyful! It’s so impressive when the staff remembers your name, knows your food allergies and what drink you like. Within a couple days, we had all made friends and were enjoying every single moment with each other and the crew.

Mom and I were so impressed with the entire crew. There is not one single thing I would have changed bout this trip, except the really bad tour of Papeete on the last day. They work so hard every day for long hours, for generally several months at a time. Some of the crew are from the Philippines and work 8 months on at a time. Despite their schedule there wasn’t a single day that we were not greeted with compete and genuine happiness. Miss you Eddie With and Eddie Without (waiters who share the name Eddie but distinguish themselves by hair and no hair haha). They referred to us for the remainder of the journey as Mom Carol and Lady Angela.

 

The next morning we wake up in Rangiroa and on our itinerary for the day is a hike through the mesmerizing Blue Lagoon, visiting a local coconut processing area and an island search for the ever allusive Blue Lorikeet, which unfortunately I only heard and didn’t see. We walked and chatted and laughed and learned about our fellow passengers. The Blue Lagoon is one of the most absurd places I’ve ever seen, meaning good. Now, the zodiac ride back to the ship that afternoon gave us all a glimpse of what the word ‘Expedition” means. That day on the way back to the ship in our zodiac we experienced that word. There was a lot of very rough chop on the way back. Holding on for our lives getting pounded by waves over and over. Out of corner of my eye I watched as the driver grinned at us. We must have been a sight!

“Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing.” Helen Keller

That afternoon after our adventure we were treated to a photo presentation and lecture by National Geographic Photographer, Jay Dickman, titled “The Importance of Photography in our Lives.” Jay is aPulitzer-Prize winnerand has been working in photojournalism for 30 years. He has been present for and photographed events such as Super Bowls, the 40^thAnniversary of the bombing of Hiroshima, the war in El Salvador and national political conventions. He has also co-authored guidebooks on photography. During his lecture I was emotionally spellbound as he went through his slides of his prize winning photos and told the stories behind them. His photos touched my heart and soul as he has captured some of the most intimate moments during these events. Even more impressive was the genuine enjoyment he received from helping the passengers with their cameras and shots. We were so appreciative for his guidance and his moving talks.

For the next two days we explored the Tuamotu Archipelago. This Archipelago includes approximately 80 islands and atolls. There is a small village located on Teamanu, which was once the capital. The first church, built in 1874 is located on this island. While visiting here we had a couple bikes so we did some self-exploring of the island.  We went to visit the church, the old lighthouse that looks more like a Mexican ruin and we had the opportunity to pet and feed a couple of beautifully gentle nurse sharks. Everyday they come to shore to feed from the locals. Fakarava is one of the largest atolls in French Polynesia and part of the UNESCO Biosphere Reserve for rare species.

Makatea was our next stop; the island I thought was made up. Makatea is one of three coral islands that were known for its large phosphate deposits. Hundreds of people and miners flooded the island. Eventually, the mining stopped and Makatea was left in poor shape. To mine the phosphate, 75ft deep circular holes were dug and drilled into the limestone, making the island very dangerous to walk around. The school and other places were leveled to the ground. The vines and jungle took over the island eventually and abandoned buildings and forgotten mining equipment scattered the coast. As a result the population of the island is now very small. Ultimately in 1909, a ship wrecked on the reef and a bent rod stopped the engines and the current carried the ship onto the reef.

So the day on Makatea started with an amazing personal experience at a cave grotto for my Mom and I only. The day before the leader and the physician on board called me in for a meeting about my health. There were decisions I had to make and I needed to fill them in on where I am in terms of my disease, medications and my wishes. In preparation for this I filled in the doc and Jimmy, that I am a DNR and DNI. This was the first time someone mentioned DNI so I was unaware of what it meant. It means do not intubate. If I was to have a seizure in the water they would intubate me but the doc explained he could do this but the ship did not have the facilities to keep me intubated as long as may be necessary. All of this makes complete sense given the situation we would be in and the risks.

To start off our private excursion through the grotto, we left the ship before the other passengers and went over to the island of Makatea. This was a dream come true for me. This kind of career path was everything I always wanted. They brought me over early to help set up the site prior to the actual excursion. As I climbed further down into the darkness of the grotto, placing tea lights along the path, I looked up and down and realized how beautiful this setting was, especially after placing the lights under the water. It was then that two of the crew guided my Mom and I through the cave, snorkeling through the tunnels and seeing the magnificent cave. I look up to take a breath and we are in the middle of an incredible place. It was out of a movie, like Pirates of the. We had the place all to ourselves. They gave me a magical and once in a lifetime experience and for that I will be forever grateful. The crew truly cares and wants to make sure people like me really enjoy the trip by doing these special things for us. We were blessed on this trip.

I think it was around this day that we experienced rough seas on the Orion in the early evening on our way to the next stop, Huahine. Mom and I watched from the enclosed library on the top deck at the passengers on the front of the ship holding on and getting smashed with waves. However, they did get the best view of the pod of dolphins swimming and jumping through the waves at the front of the ship. Walking back from dinner that evening I finally understood the need for the seasickness bags at every corner of the ship. After returning home I saw video footage of the next expedition’s experience with a day of rough seas and I was so grateful we didn’t experience that.

Huahine is actually two islands connected by a bridge, Huahine Nui (big) and Huahine Iti (small).  Known for its lack of mass tourism and sacred blue-eyed eels, this island was originally home to Tahitian royalty. Referred to as The Garden Island or the Garden of Eden, the beautiful vanilla orchid exists only here. The highest density of ancient marae exists here. The marae are known as communal and sacred places. They generally consist of an area of cleared land rectangular in shape and bordered by large flat stones. Many of the marae have been destroyed or abandoned with the arrival of Christianity in the 19^thcentury.

Many Polynesians believe the marae are, “portals between Po, the world of the gods and darkness, and the Ao, the everyday world of people and light, so that people could communicate with their ancestors.” In 1994 archeologists working to repair a marae on Raiatea discovered human and pig bones. This led historians and archaeologists to the idea that it was actually possible that these bones were a result of human sacrifices, specifically to the Polynesian god Oro. Oro in Polynesian history was known as the “God of War” but also the god of many other things.

Huahine is not just known for its marae. A tropical jungle hides coconut plantations, banana trees, breadfruit trees, watermelon fields and ancient temples. The name Huahine comes from the Tahitian word, which means woman. On Huahine there is a mountain resembling the outline of a pregnant woman. In the afternoon we spent some time at Bourayne Bay. Mom and I took out the stand up paddleboards and paddled around the curve of the island. I gazed at the landscape around me and I was in complete awe. The water was beautifully clear and incredibly warm. I could see the stunning reef below. It was a perfect day for both of us and I was super proud of my Mom for killing it on the paddleboard. I could have stayed there all week. A couple other notes about Huahine is that it’s known for some of the best surf in the South Pacific and each October the biggest outrigger canoe race begins here.

That evening on board the ship we were treated to a very special Polynesian event including a buffet dinner along with a show of hidden talents put on by the crew. This was one of my favorite nights aboard the Orion. Many of us danced until late in the night to the music performed by the crew. We learned later that this talent show is a very serious event for the crew. They practice everyday and hold auditions. The bartender Eric makes the cuts. The different groups come out in hilarious costumes (YMCA/Hula Girls) and play some great live music for us. I don’t have any photos from that evening because I was having too much fun!

On to Bora Bora! Surrounded by a crystal clear lagoon and reef, Bora Bora is also home to the extinct Mount Otemanu and Mount Pahia. In ancient times the island was called “Pora Pora mai te pora”, meaning, “created by the gods” or “first born”. Historically, Bora Bora was an independent kingdom until 1888 when its last queen, Teriimaevarua III was forced to resign to the French. During World War II, the United States used Bora Bora as a South Pacific military supply base, including an oil depot, airstrip and a seaplane base. Known as “Operation Bobcat”, the base provided a supply force of nine ships, 20,000 tons of equipment and nearly 7,000 men and at least 8, 7/45 caliber guns. At the time these guns were considered to be the largest weapon with rapid fire that one man could handle. These weaponswere set up at calculated points to protect the island against potential military attack. However, the island saw no combat as the American presence on Bora Bora went unchallenged over the course of the war. The base was officially closed in 1946.

The day before our Bora Bora expedition I was talking to one of the cultural specialists, Isa and I mentioned that I’d love to have a day or morning just being on a beach, feel the sand in my toes. The next morning when I was walking to breakfast I saw Isa and she had tears in her eyes. She looked at me, hugged me hard and said, “Jimmy is giving you your Bora Bora beach day. Jimmy and some of the other crew arranged to take my Mom and I to a private motu called Tapu. We took the zodiac before the other passengers set off for their day and he dropped us off on our own private island for the whole morning. There is a caretaker of the island who lives there and he acknowledged he would keep watch and changed into his SECURITY t-shirt and insisted on showing us his home on stilts.

After returning to the ship I told Isa about the tour of his home and she laughed and told me he really wants a wife and that he did the same thing with her but she was “too old” haha. Mom and I spent the morning walking around the motu, swimming, laying in the sun and collecting shells. In broken English he asked about my tattoos and showed me his most recent one, a very beautiful custom Polynesian tattoo. I took this photo of him before we left. This picture also made it into the last night’s slide show of photos from the week. I was trying to capture a ‘Moment’ photo, which I did well. I am grateful to Jay Dickman for his explanation of this type of photo and for his guidance.

After we spent an incredible day on Bora Bora we sailed on to Raiatea and Taha’a. These islands share a lagoon and reef. Most people believe this was originally one island that split in two. Raiatea is one of the most important cultural sites of French Polynesia because of the Marae Taputtapuatea, a ceremony and memorial center. This center was referred to as the “Polynesian Triangle” and includes New Zealand, Hawaii and Easter Island. Historians believe this center dates back to 1000AD. Polynesian seafarers’ and priests gathered here and it’s also known as a site of human and animal sacrifices made to the gods.

Known as the “Vanilla Island”, Taha’aproduces outstanding pearls and vanilla beans. Taha’a produces 70-80% of all French Polynesia’s vanilla. As this was technically our last afternoon, Mom and I chose to snorkel at Motu Mahaea and it just so happened to be the best snorkeling of the whole week! I couldn’t believe how healthy the small reef was and how many varieties of fish we saw. These are definitely some of the best photos of the week!

Now, a blog about French Polynesia would not be complete without a little background on the legendary over the water bungalows! The story of the overwater bungalow begins on the Tahitian island of Ra’iātea but it’s also documented that they began in Mo’orea. A trio of American expats was running one of the country’s earliest hotels. Jay Carlisle was one of them and was quoted in an interview with Conde Nast Traveler, “We were trying to get publicity for the island—it doesn’t have any beaches, but we were right on the reef, so we wanted to put in something different.”  The ex pats likely gathered their inspiration from the locals and their over the water fishing shacks.

Our last day, Papeete. What a sad day including a pretty sad/bad tour of the island before heading back to our real world. Papeete is the capital of Tahiti. During WWI, German vessels caused significant loss of life and damage to the island. Eventually the decision was made to move a nuclear weapon test site to two atolls almost 1,000 miles to the east of Tahiti. In 1983, The Church of Jesus Christ of Latter-day Saints built a temple here because of the large number of members in the region. In 1995 the government conducted the first of the last series of nuclear test detonations off the shores of Moruroa. Rioting in Papeete began after this and resulted in a large number of injuries and significant damage to the capital.

Another sight definitely worth mentioning on Papeete is the former home of James Norman Hall, the co-author of Mutiny on the Bounty, published in 1932. The novel was based on a mutiny against a commanding officer in 1789. Hall died in Tahiti in 1951.The novel has been made into several films and a musicaland is cherished as one of the most gripping sea adventures ever told. To be able to see his home and all of the items he had throughout was inspiring and beautiful to me. I had chills when I saw his desk with his typewriter. If only I could move to a place like this, I’m sure my writing would significantly improve. After all, not even half the islands are inhabited so…but unfortunately, I have a non friend called Cancer that I have re named, “The Baker’s Dozen” and not “The Dirty Dozen”, due to one more tumor that was born this summer. Even though you’re not here physically Clarice, I hope you and Hannibal burned violently in hell and I hope someday all your little bitch offspring will as well. It’s inevitable anyway; I’m being cremated ha!

I know this is a very long blog so I’ve inserted Intermissions where it might be a good time to rest and take a break or take a tour of Tahiti through my eyes and through my lens. I was inspired to do this after watching The Sound of Music a handful of times recently and that movie is 3 hr 44min! This next part is about my cancer, my prognosis and everything that goes along with that. Here are some of my Garden of Eden photos.

INTERMISSION

“She is a beautiful piece of broken pottery, but put back together by her own hand, but a critical world judges her cracks while missing the beauty of how she made herself whole again.” JM Storm

Even after an intermission, it still feels heavy to jump right from magic Tahiti land to CANCERland. I have a lot of cancerful updates this time, mostly not of the celebratory kind. I don’t want to depress everyone since I was just writing from such a positive place. But, this is my life and anyone who knows me knows that I have high highs and low lows in terms of my disease. This part will have a little of both. It’s also Breast Cancer Awareness month and you all know how I feel about that. However, I’m trying to come from a different perspective this year and not be so negative about the pink crap blah blah…I hope my cancer will help researchers save just one person from having to be a passenger along this ride, that you really have very little control of. I am on the other hand, no pun intended, wearing my teal green METAVIVOR -Don’t Ignore Stage IV bracelet. Choose them, donate to them. This is an organization doing the work that other foundations aren’t and SHOULD BE. After all, 2 out of 5 people will develop cancer in their lifetime and 90% of us will die due to cancer metastases.

After returning home from French Polynesia in August, I had scans right away. Once again these scans showed another progression in the size of my tumors. So, once again I am kicked off another clinical trial and now on to “last resort treatments”. These options include craniotomy #3, whole brain radiation and a very toxic chemotherapy called Xeloda. I chose the chemo but I’m regretting that decision as I sit here in Hawaii sick, not able to walk very well and feeling like I am being poisoned as the skin on my hands and feet is dying, my nose is full of sores, my fingertips and toes are numb and painful from increasing neuropathy, unending fatigue with very little sleep, heart irregularities, muscle, joint and bone pain, dizziness, skin changes all of which I have, rapid weight gain (13 pounds FU), dehydration symptoms and a lot of other shit I don’t need to explain. About 3 weeks into starting this chemotherapy the oncologists had to reduce my dose. There are three toxicity grades when it comes to chemo and side effects. Obviously you don’t want to be graded any of these, let alone a three. Within three weeks I was at a toxicity grade 2.

“Xeloda is a recently developed drug. It’s a type of medicine called an antimetabolite that interferes with the metabolism and growth of cells. Capecitabine is an unusual anti-cancer drug in that it is most active in cancer cells; normal cells are exposed to far lower concentrations of the drug. Cancer cells convert capecitabine into another anti-cancer drug called 5-fluorouracil. This substance prevents cells from growing and reproducing. The U.S. Food and Drug Administration have approved Capecitabinefor the treatment of metastasized breast cancer that is resistant to standard chemotherapy.” The silver lining…I may die anyway or decide to quit treatment because of the quality of my life at the low cost of $350 per month out of pocket. Obviously this is a joke. Thanks for the help Medicare. Middle finger up.

Now, all this “last resort” talk has me really questioning everything. I decided I needed to have a conversation with my team about my prognosis. So about a month ago I had a come to J talk with the oncologist I trust the most. I told her what I wanted to talk about and her response was, “Are you sure you want to talk about this?” At this point I feel the need to have some idea about what they’re thinking time wise. I’m a numbers girl, that’s why I ended up as a practice manager at a medical facility and not a nurse! She said, “I would be surprised if you made it to next Thanksgiving.” I didn’t have words and there was no hesitation from her. At my next appointment with my 2^ndbreast oncologist (MGH), we discussed this conversation and she said there might be some truth to that. So the 15 months I was given is now 12-13…what do I do with that? She also stated that they (the MGH team) didn’t anticipate I would survive as long as I have.

Several months ago, through social media, I saw a video that made me incredibly emotional. This was the last letter written by Holly Ann Butcher. She passed away the day after she wrote this letter that I’ve included below. Holly was a beautiful, 26 year young woman from Australia, diagnosed with stage IV Ewing Sarcoma.

“It’s a strange thing to realize and accept your mortality at 26 years young. It’s just one of those things you ignore. That’s the thing about life; it’s fragile, precious and unpredictable. Each day is a gift, not a given right. I haven’t started this ‘note before I die’ so that death is feared. I like the fact that we are mostly ignorant to its inevitability. Except when I want to talk about it and it is treated as a taboo topic that will never happen to any of us that we all have the same fate after it all so do what you can to make your time feel worthy and great, minus the bullshit. Be grateful for your minor issue and get over it. I’m watching my body waste away right before my eyes with nothing I can do about it. And all I wish for now is that I could have just one more Birthday or Christmas with my family, or just one more day with my partner and dog. Friend or not…be ruthless for your own well-being. Give, give, give. It is true that you gain more happiness doing things for others than doing them for yourself. I wish I did this more. Since I have been sick I have met the most incredibly giving and kind people and been the receiver of the most thoughtful loving words and support. I will never forget this and will be forever grateful to all of these people. Have the guts to change. You don’t know how much time you have on this earth so don’t waste it being miserable. Until we meet again…’

I don’t feel I need to spend much time writing about this letter. Holly wrote everything we Cancerful’s think at one point or another. Her words are words to remember and take seriously because after all, “This is your life and it’s ending one minute at a time.”

I recently listened to a TED TALK on How Cancer Cells Communicate & How We Can Slow Them Down, by Hasini Jayatilaka. I try to stay educated about cancer and especially when there may be new treatments available. I appreciate these incredible figures trying their very best to do anything that would make a difference for those of us in Cancerland.

“Cancer is a battle the human race has been fighting for centuries.”

“Hasini Jayatilaka discovered a mechanism that causes cancer cells to break away from tumors and metastasize. Jayatilaka is currently conducting research on understanding the complex pathways that govern metastasis, the spread of cancer, which is responsible for 90% of cancer related deaths. She recently discovered a new signaling pathway that controls metastasis and showed that by blocking the pathway, the spread of cancer can be slowed down. When cancer cells are closely packed together in a tumor, they’re able to communicate with each other and coordinate their movement throughout the body.”

“Using different drug cocktails we can stop the communication between cancer cells and slow down the spread of cancer.”

In talking about her research and the beginning of her career and the challenges she faced she said, “Lets face it, cancer cells in our bodies aren’t stuck to plastic dishes.” Hasini is a brilliant and comedic woman who is leading the way towards crucial cancer treatment discoveries. She discussed how she and her team, “…discovered a new signaling pathway that controls how cancer cells communicate with each other and move based on their cell density (now named the Hasini Effect). Our researched drug cocktail found that they had no effect on tumor growth BUT DIRECTLY TARGETED METASTASES. This was a significant finding because currently there are no FDA approved therapeutics that directly target the spread of cancer.” She received an overwhelming positive response to her hypothesis from the medical community and patients.

She stated, “My team is currently using the Hasini Effect to develop combination therapies that will effectively target tumor growth and metastases. We are also working on lowering drug toxicity and reducing drug resistance. Collaboration is my favorite super human power.” Watch out cancer world the Hasini Effect is coming through!

While on topic of brilliant researchers it is necessary to announce to those of you who haven’t heard the news that The Nobel Prize in Physiology or Medicine has been awarded to two cancer immunotherapy researchers, James Allison of the USA and Tasuku Honjo of Japan. Their research involves using our own body’s immune system to attack cancer. A statement from the Nobel Committee saluted their accomplishments as launching, “an entirely new principle for cancer therapy.” The drugs that have been released as immunotherapy treatment can put people into remission but also have their own set of side effects. The last trial I was on was an Immunotherapy trial. These drugs don’t work for everyone, and can be costly. The other downside that researchers are working on is how to prevent the immune system from attacking the body in the process. This trial ultimately didn’t work for me but numbers show that it is working which gives us hope.

INTERMISSION

Over the past couple years I’ve made connections with people I meet during my travels or at my yoga community. We keep in touch and these incredible men and women give me hope, support and love. I received an email from a wonderful woman I met in NY relaying a story she had read in the NY Times magazine. This excerpt is from an article on love and loss. The wife lost her husband. The husband gave his wife instructions on how he wanted to live the rest of his life: “I just want you to know that I am not going to do the dying part… We are only going to do the living part.”

My friend told me this article resonated with her and made her think of me. She told me, “I know that you have a core of positivity and strength. I am thinking that you want to just keep living, until you can’t. That’s all any of us can do. I know it may be of no consolation to you, but we are all dying, me too. None of our fates are guaranteed. Hoping you can keep moving forward, until you can’t. Hoping for another blog post. You are a very good writer.  Often good writers tell their stories by not “spelling everything out” for the reader. Often what is not said is more powerful than what is. Use your writing to enrich others through your life-affirming activities and joy of life. We all die. Nothing new there.  But we don’t all “live”. You do.” It seems like the universe knows when to send me messages like this. It serves as motivation and optimism that I still need in this life. We may not be the best of friends or even live in the same state. This woman I hardly know keeps in touch and is always sending me messages of hope. You all should be celebrated for keeping my head above the Ocean of Cancer and for those of you that have different motives…

“I will not let anyone walk through my mind with dirty feet.” Mahatma Gandhi

A couple weeks ago a friend I met through my yoga community at New Hampshire Power Yoga sent me this via text. The timing was interesting given I was having a bad day. She can always sense my emotions. It’s a very powerful gift. Her text read,” You have so much shit to shovel all you can do is the best you can at the moment you are in as events unfold and you have to make sure not to hold yourself to the same standards on bad days that you do on better days or you will go nuts/it takes too much effort to re-train your thinking when your mind is overwrought and your body adjusting itself on a daily basis, so sometimes its helpful to just ignore your own self/don’t look as your time away from yoga, hiking etc. as a limitation, but as an opportunity to do something else you enjoy!/you still have shit to do here.” I look forward to our next conversation!

“Admit it. You’re not like the others, and that’s not just OK, it’s F-ING beautiful…”

Speaking of hiking, unfortunately I wasn’t able to complete one 4,00 footer hike per month this summer. But on July 22^ndI hiked Mount Avalon, Mount Field and Mount Tom all in one day. It was such a beautiful day, perfect conditions and I had this amazing stamina and determination to do this. At the end of the day these were my fit bit stats: 25,267 steps, 259 flights of stairs, 10.71 miles, I burned 2,925 calories and was active for over 260 minutes. Now I would call that pretty darn impressive for a chick with terminal cancer. These are some photos from that day.

“I cannot believe how sensitive I am to the smells of cut vegetation, of the flowers…of the forest. It is as if my nerve endings are plugged into an amplifier. The green fields, the pink and orange roadside flowers, practically vibrate with color. I am awash in stimuli.” Steven Callahan

In ending the potentially longest blog I have written, I won’t write much. But I will tell you this; in the last month I have not grown any new tumors. Something is happening, whether it’s my current chemo or lasting effects of the immunotherapy trial, I’ll take the extra 2 months and sprint away with it. In the next month I will be traveling Hawaii for two weeks and then Tokyo with one of my closest friends and California in December to celebrate the life of Chad Peacock. I still miss you everyday.

“Start over, my darling. Be brave enough to find the life you want and courageous enough to chase it. Then start over and love yourself the way you were always meant to.” Madalyn Beck

Recently I heard this quote from a TV show about a young woman with breast cancer, “I did everything I was supposed to do and I still got cancer. I’m not playing by the rules anymore.” At this point in time I think I’m going to follow her lead.  Until next time.

 Angela xo

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Death is not fearful, suffering is.” BJ Miller

This blog comes at an awkward and sad, yet, joyous time of my life. Having just received some incredibly disappointing scan results, I’m finding it difficult to focus on what this blog was originally going to capture. I was supposed to be writing about an amazing trip to Spain but my thoughts are with The Dirty Dozen. I can literally feel them re organizing for their next war, as I squint through a tumor headache, swallow a pain pill and attempt to see Spain through the Cancer.

Spain was incredible. Spain was beautiful around every turn. Spain was historically complex. Spain was delicious. Spain was sunny and vast and full of love and spirit and faith. Spain was a celebration of life every day we were there. Spain was a celebration of the merging of love, friendship old and new and of course more vino and tapas than I could imagine!

We started in Malaga, Spain the southernmost city in Europe on the Coast of the Sun, 80 miles north of Africa. This is where Picasso was born and raised and where it is not uncommon to see Antonio Banderas having a drink downstairs from his apartment, right inside the historical center. Muslim rule continued here until 1487 when it was retaken by Christian forces.  The clear combination of Muslim and Christian rule shines through in the architecture the most.

After a couple days in Malaga we took the train to meet up with my longest, closest friend and her new husband and friends. Let the wedding celebrations begin in one of my favorite places I’ve been, Córdoba, Spain. We rented an adorable apartment steps from the historic center and the largest Mosque in the entire world. We celebrated on the rooftops with wine and (pineapple juice ;)) and platters of hummus and other Spanish dishes! We laughed and hugged and celebrated this new union overlooking one of the most beautiful places in the world.

Córdoba was a Roman settlement, but then colonized by Muslim armies in the 8^thcentury. Córdoba consisted of hundreds of workshops creating goods like silk. There were libraries in addition to the many medical schools and universities. Córdoba had a prosperous economy with its “skilled artisans and agricultural infrastructure”. Recaptured by Christian forces in 1236, this historic center was named a UNESCO World Heritage Site. After the Christians recaptured the city, the mosque was converted into a large Catholic cathedral. Còrdoba was known as a spot of “peaceful coexistence of three different cultures: Jews, Muslims and Christians”. There is also a popular saying that the prettiest women of Spain are natives of Cordoba!

One day we decided upon the urging of others to go see the Alhambra, a Moorish palace in Granada. Located at the foot of the Sierra Nevada Mountains, the landscape includes olive groves as far as the eye can see. This area is based at the bottom of these majestic mountains where there is a combining of 4 rivers. What an incredible short road trip from the historic center of Còrdoba. Our tour of the site began in the gardens of the Alhambra, a stunning and colorful view laid before the palaces made of stucco against the bright blue of the sky and the backdrop of the green and snow capped Sierra Nevada Mountains.

The Alhambra,”The Red One or Female”, is a 35 acre palace and fortress complex built in AD 889. It remained ignored until the ruins were covered with a new royal palace in 1333. The Alhambra is a “palace city” that was declared a World Heritage Site by UNESCO in 1984. It consists of a walled city, a defensive area, residential palaces, gardens and orchards. The Alhambra is a testament to Moorish culture in Spain and the skills of Muslim, Jewish, and Christian artisans and craftsmen. Poets have described it as “a pearl set in emeralds”.

The palace complex garden was designed with endless rows of – have to stop and smell every blooming rose-kind of garden. The wildflowers, myrtles and fountains blew my already exploding Cancerful mind. I was panicking trying to capture everything in photo but at times dropped the camera for my own eyes. As I stop to see and listen there is a mystical and captivating sound of water everywhere with all the fountains, cascades and long sun lit reflecting pools. The majority of the palace buildings are quadrangular with all the rooms opening to central courts. As each new ruler came through the palace, new sections were added, covering the old and following the “paradise on earth” theme. It was here in 1492 Christopher Columbus requested a royal endorsement for his westward expedition.

During our last couple days in this magical old town we settled in at our favorite vino/tapas bar, walked around the mosque and saw it lit up against the dark of the night, sat on our deck, took a long walk to the cathedral with a nun who liked to rub my head and hold onto me real tight and sat on our deck taking in the view of old Còrdoba and saying goodbye to friends venturing on to new places. Before we knew it, it was our time to move on to Seville.

Seville is the capital and its Old Town contains of 3 UNESCO World Heritage Sites. We were lucky enough to visit 2 of these sites but many others. Seville was originally a Roman City then conquered by Muslims and again by the Christians. Seville became one of the most important ports for trans-oceanic trade and it was here that the first circumnavigation of the Earth departed in 1519. Many people even travel here to visit film sites for movies like Lawrence of Arabia, Star Wars and most recently Game of Thrones.

Seville is also known as the birthplace of Tapas, a term meaning ‘to cover’ or ‘top’, the cuisine that originated as thin slices of bread and meat consumed with small glasses of sherry. Surprisingly I actually lost weight on this trip. I think moving here should be considered. Seville is approximately 2,200 years old. Along with tapas, comes the birthplace of Flamenco. What an amazing dance to witness. The dance began in the gypsy culture, as an expression of the poor and marginalized. Today, there are more flamenco dancers in Seville, than anywhere else.

The official motto of Seville is “NO8DO”. It is believed to mean,”No me ha dejado”, or “It [Seville] has not abandoned me”. The eight in the middle represents a skein of wool. Legend states that the title was given by a former King to the city and is now the emblem on the municipal flag and on city property such as manhole covers. It is also imprinted on Christopher Columbus’s tomb, located in the Seville Cathedral. With such mysteries as these, one of the most popular Spanish cultural sites in Seville is the, Plaza de Toros de la Maestranza which we received permission to tour.

This bullring in Seville is considered to be one of the best in Spain and one of the oldest in the world. Although many of the younger generations in Spain loathe the sport, new regulations have been slow to come around to protect the animals but also to maintain a balance in cultural events. The Seville plaza dates back to the 1760s and can seat 10,000 people still today. On the tour of the ring, we visited a small museum, seeing memorabilia like costumes, posters and bullheads. We were also able to visit the actual ring, which was incredibly intimidating and heavy with sadness, especially for me who could never witness such an act.

During the fighting season, around 20 fights will be scheduled here. The building is in the shape of a 16-sided hexadecagon. According to one expert, Alexander Fiske-Harrison, author of Into The Arena: The World of the Spanish Bullfight, “Bullfighting festivals have existed for around 300 years, although the fighting of bulls dates back to Roman times. The first bullfightswere on horseback to celebrate special occasions such as royal weddings and military victories.” The regulations on bullfighting define in exacting detail the structure and procedure of bullfighting in Spain.Rarely, when a bull shows exceptional skill, the animal is pardoned and, rather than being killed and sent to slaughter, lives on the ranch where it was raised.

Seville was the perfect city to end our adventure. Spain, a special place and home to a saturated history, beautiful food, architecture and people. I couldn’t have envisioned a better trip. It felt important to me to witness these sites, traditions and cultures and to learn the history. Not only a final resting place for Christopher Columbus, but also a city soaked in picturesque churches and buildings. This has been my 2^ndtrip to Spain and I hope it’s not my last. How I would love to go back to Còrdoba for a month to read, write, wonder the streets, eat and laugh and forget about the rest of my real life.

Coming home, back to NH was nice but the immediate news of my spreading disease wanted to send me packing back to the quiet life in Spain with tapas and flamenco and all of it. I’ve had a hard time with this blog because of that but also because of the amount of content I deleted due to my lack of motivation since the “news”. In my mind plays, “EXTRA EXTRA READ ALL ABOUT IT: CANCER SPREADS!” This makes me think of an article in the paper recently that referenced the clinical trial I WAS on before The Dirty Dozen grew up into adult children while I was enjoying myself in Spain.

This recent article in the paper was quoting breast cancer stats for the clinical trial drug that I was on at $150,000 per year. A drug that makes $14 billion in combined sales with another drug. They also spend $500 million in ads.” These numbers frustrate me for a bunch of different reasons but more so because THIS drug didn’t do shit for my disease as it turns out. My cancer got a few month nap but I didn’t. When it woke up, I lost my clinical trial and a big dose of HOPE.

Cancer’s purpose is to destroy life. Cancer is therefore, the purest definition of evil…”

These recent results have forced me to reach out in other directions, towards other treatments. There’s not much to offer me at this point of the Star Wars in my Brain movie besides the same slice it open and radiate the s@%!* outa my head skit. I have been researching alternative therapies, located domestically and internationally. I wonder if Pfizer or Merck would like to contribute to the 3-month program I was accepted into for the low cost of $58,000 per cycle bill? I have about $500. Looks like that’s not gonna work. So for now, I’ll just keep researching and carrying around anti-seizure meds and opioids then. So if anyone is with me and I start having a seizure, just stuff a bunch of the toxic pills in the shell case in my pocket into my mouth.

“Inhale I am not my past, Exhale I am not my future…” my insanely smart yoga teacher guiding us in a meditation.