“Sometimes life hits you in the head with a brick. Don’t lose faith.” Steve Jobs
I love this quote. It’s totally true. But sometimes it’s a tumor or two tumors and not a brick. Either way, they both hurt. I’ll get right to the Promiscuity part because clearly I don’t want to give anyone the wrong idea. Now, we already know that Hannibal and Clarice had a baby in my brain this summer. What we now know is that there were more babies. Babies that are now growing up into toddlers.
I have two more brain tumors. As my best friend said, “Clarice and Hannibal were having a lot of sex up there and now you have to take care of all their kids.” We use humor so much when processing my illness. It makes everything easier to deal with. It’s not denial, it’s not, not taking this seriously. Trust me, I’m taking this very seriously. As I sit here, tears are falling down my face and my sweatshirt and I’m wiping my eyes so I can keep writing. This is very real.
I try very hard not to lose faith, ever again. It’s hard somedays when all I feel is defeat. Sometimes it’s too much work trying to hold onto hope and faith so tightly. So, the two tumors have both doubled in size in the last 60 days. I’ll have another gamma knife surgery in the next 10 days. I’ve also decided to stop naming my tumors, they’re now receiving numbers. These are tumor 4 and tumor 5.
I’m now almost 10 months out from going from remission to incurable. The stats say 10-14 months but I’m not following those rules, thankfully. Yes, I may be getting new brain tumors every two months thus far but they’re “manageable”, right now. Yesterday, as I asked one of my oncologists through a few tears, about my prognosis, he assured me that we are still in a completely good place. I asked him if he would tell me when he thought the shit was hitting the fan so to speak. He said absolutely.
My other neuro oncologist said, if more grow after this treatment then she would like to see me in an immunotherapy clinical trial. At least there’s that option as well. I’ll never be ‘curable’. I know never say never but the realist in me knows better. BUT, I may have a lot more time then 10-14 months. I guess breaking the cancer rules is finally paying off.
This blog was supposed to be about my recent trip to Panama and California and not more brain tumors. Thankfully I wrote a lot of it before finding out about #4 and #5. I’m distracted and sad and I wrote the next bit while I was happy and warm in California last week. I just have to sneak it in here too that my ride was a private jet and not a commercial airline. I think it’s pretty cool that I have terminal cancer and in the last month I’ve been to Panama City, Bocas del Toro, Ocean City, San Diego, Los Angeles and Desert Hot Springs. I just need to keep on moving forward the best way I know how.
My recent trip to Panama made me think of my future and this brought me to tears somedays. The tears came from the thought of my life ending sooner rather than later. “I’m not ready”, is a consistent trigger. As I sat in a perfect house over the crystal clear water, I thought to myself I’m not done seeing all the beautiful places I’ve always wanted to visit. Other days were a heavy combination of bliss, calm, joy, peace and an endless view of incredible beauty.
Traveling to Panama, I left with no expectations. I had read a lot about the area of Bocas del Toro off the northeast coast of the country. It seems that people are really catching on to this little piece of heaven. I was looking forward to all of it, the old, the new and the knowledge that there would probably be moments where I would be out of my comfort zone.
Several theories exist about the origin of the name “Panama”. Some believe the name came from a species of tree called the Panama tree. In native language it means “many butterflies” or “abundance of fish” or “far away” which came from the Kuna Indians of Panama. In my mind, Panama means paradise.
Soaked with a volatile history, it was clear to me that there is a strong desire among the Panamanian people to maintain their independence and original character of their true heritage. Since the 1800s Panama has been tied to Spain and Columbia but is now its own nation. The United States was supportive of Panama’s separation from Columbia in 1903, thus giving the USA the opportunity to take over the construction of the Panama Canal from the French. In 1999 control of the canal was transferred over to the Panamanians in its entirety.
During this time Panama remained under the control of military dictator, Manuel Noriega. The United States supported Noriega and as a result he worked closely with the CIA. The CIA were aware of Noriega’s questionable activities involving drug and people smuggling, money laundering and supplying weapons to the revolutionaries in the region. In 1987 President Regan began to freeze the USA’s economic and military assistance in response to Noriega’s rule, despite allowing his behaviors.
Manuel Noriega was eventually accused of these trafficking crimes. Prior to his imprisonment, the United States invaded Panama, capturing Noriega and detaining him as a prisoner of war. Being described as the largest military operation since the Vietnam War, the number of deaths as a result remain a heavy topic of controversy. In 2015, Manuel Noriega apologized to his country for the offenses his regime had committed.
Writing about Panama would not be complete without mention of the canal. A 48-mile waterway connecting the Atlantic Ocean to the Pacific Ocean, it has been called one of the seven wonders of the world. The construction of the canal has made travel for ships easier, taking 6-8 hours versus sailing around the dangerous southern tip of South America.
Over the years, the canal, its construction and expansion has taken a major toll on the environment of Panama. Deforestation, water loss, pollution and the loss of biodiversity now plague areas of the country. Once a beautiful swimmable coastline, the waters surrounding Panama City are now brown, polluted and toxic due to raw sewage and industrial waste. The Panamanian government is working towards rehabilitating some of the affected areas as the wildlife is some of the most diverse in Central America and 40% of the land is jungle.
Our taxi driver in Panama City, Jose, recalls growing up there and stark difference of what the land and waters are now compared to what was during his childhood. He talks about his memories of a pristine, swimmable beach surrounding Panama City. As he drives I see out the window an enormous difference in the view from one block to another. In between modern high rises and the city center, are small areas of shanty towns, fish markets, and ‘black’ markets bordering the toxic mud flats. Attempts by the government to reforest some of the country has its faults. For example, two-thirds of the trees that have been replanted are teak, which is a commodity for the country, not a natural habitat for wildlife.
Before flying to Bocas del Toro, we had a night in Panama City. We smoked a hookah for the first time and saw an incredible show at the hotel. A fusion of traditional Indian and world music, I had never heard anything like this live. It was beautiful. The hotel was located in the historical, Old Town, known as Casco Viejo. Designated a World Heritage Site in 1997, Casco Viejo has a turbulent past. In 1671 the city was attacked by pirates, specifically Henry Morgan, which resulted in widespread destruction in different areas of the city. A combination of old buildings, ruins and alleys, there is a clear view of the work happening to restore dilapidated buildings.
Casco Viejo is also home to the Presidential Palace. I couldn’t get too close with the heavy security guarding the entry and exit streets. The tourist police and presidential guard are on nearly every corner as well. This area of the city is the second most popular tourist destination in Panama City, ranked behind the Panama Canal. Every street holds some sort of monument of historical significance. I saw stray cats and dogs, some sleeping on the sidewalk, some scavenging for food. Graffiti marks the walls in town. I saw a big difference in the wealthy and poor.
The next day we flew to Bocas del Toro (meaning “Mouths of the Bull”), but not until the pilots could see the top of the mountain. With Costa Rica to the West and Columbia to the South, Bocas has nine main islands. Christopher Columbus explored this area in 1502 while searching for a passage to the Pacific Ocean. Originally part of Costa Rica, Colombia took control of Bocas, but in 1903 became its own province. A colorful and lively town Bocas is a hub for travelers, retirees, wanderers and surfers. I heard many people talk of visiting the area and never leaving, of getting lost there.
Bocas is going through a lot of changes right now. Like Panama City, it’s a mix of old and new and the old is still ever present. A town built around mangrove swamps and beautiful private beaches, there was a mesmerizing feeling here. We rented quads one day and tore through 1400 acres of private property while listening to the howler monkeys. Riding through lush tropical rainforest and coastline we pass ruins that once held Manuel Noriega’s secret drug factory. We pass landmarks like La Piscina, Blue Lagoon, Christian’s Beach, Rock Beach and the Bat Caves.
During my 10 days in Bocas I spent my days on and in the water. The home I rented was built on stilts over the water. There is no land access to town so trips back and forth were by water taxis. I spent a couple days in Bocas, getting groceries, having lunch and watching the Independence Day parades and sitting in a bar drinking beers for $1.25 each. I experienced lots of offers to buy drugs, saw prostitutes, ate really bad food but it was great! Some days the rain would pour down and the winds would whip through the house. I found this atmosphere tranquilizing and meditative. When the sky’s were clear I’d paddle board or snorkel around the house. The reef was more impressive than I thought it would be. We saw starfish and sea urchins and brain coral and schools of brightly colored fish. What a gift to have right at my fingertips and toes.
While in Panama I was advised to take malaria medication just in case. What I hadn’t remembered from my trip to Africa was the affect on dreaming these meds have. My first night in this house over the water, I dreamt of sitting on the deck overlooking the endless horizon and I saw a whale right in front of me. It breached and I saw its body slip into the water. Being someone who never remembers dreams, I looked up the meaning immediately. In most beliefs whales are a symbol of strength, spirituality and protection although they have also been interpreted as a sign of our darkness and the possibility of experiencing loss. Whales tend to appear during times of relevance when you are currently facing an issue in your life. Since whales live underwater they can be seen as our own personal underworld. I felt that the appearance of this whale was more protection than anything. I felt comforted. I desperately long to return to this paradise whether it’s just in my dreams or my real life.
So Christmas is approaching. A holiday that has always been special to me. This year it’s a bit different but still not a day goes by that I am not entirely and genuinely grateful for my life and for all the people in it. I may have skipped the decorations and tree this year but there’s always next year, I pray. Pre tumor 4 and 5 I wanted to end this blog with the quote “…my cup runneth over…”. Although this is very true, I think there are others more appropriate for today.
I’m wishing my family and friends and this world peace on this holiday. Hold onto your loved ones tightly and never forget to tell them how much they are loved and appreciated. Hold onto faith. Hold onto the belief that, “Everything will be ok”.
“Hold onto me, cause I’m a little unsteady…”
“Fight when you feel like flying…”. X Ambassadors