Round 3

Tonga was a dream vacation. I am still in disbelief over its beauty, its people, and its culture. What an enormous adventure to witness one of the most beautiful places on the planet free of overcommercialization, anti-tourist attitudes ( due to irresponsible tourists), and environmental degradation. Tonga is perfect. I will always remember it as remote, magical, beautiful and friendly. 

We returned home rested, fulfilled and happy. Our tanks were filled and our sense of humanity restored. I had been struggling with the current global political landscape. After two weeks with Aussies, Kiwis, and Tongans, I was reminded that good people live in this world and they are just as irritated with governments as I am. 

We also returned to Cancer surveillance appointments. This is where this post gets a little depressing. Upon returning from Tonga, I had a brain MRI as part of surveillance to monitor any cancer growth.  It revealed that my cancer had returned significantly in the form of brain metastasis with the added bonus of leptomeningeal involvement. In other words, there are lesions throughout my spine and cerebral spinal fluid. The follow-up scans were a PET CT which showed stable disease throughout my body with no new growth and old growth diminishing, and a Total Spine MRI which confirmed the lesions spreading throughout  my lumbar and cervical spine areas. 

There’s no sugar-coating this. The median survival rate for brain metastasis with leptomeningeal involvement is 2 years. That clock started ticking last August. My doctor has given me a year to live. It's possible this number could go up, but only by months.

It’s surreal. I have minimal symptoms so far. No pain, no dysfunction (other than the usual), minimal impaired memory related to the first brain radiation therapy and the usual fatigue. So far I’m looking a lot worse on paper than I am in person. My options are ever-changing. The second week of May, I was treated with radiation to my spine. I have qualified for a study for liposomal irinotecan, an FDA-approved drug traditionally used  for pancreatic cancer, now being researched for breast cancer metastasis to the brain. It involves 12 weeks of treatment every other week and multiple follow up MRI scans. It’s going to be a busy summer between soccer tournaments, MRI’s, and chemotherapy. 

I’m scared. I’m angry. I’m sad. I’m mostly sad that I don’t get to see my girls graduate High School or Marry. Marek and I won’t have a retirement together, and I will slowly lose my capacity to perform normal daily functions. 

But equally, I lament having to say goodbye to a community of friends that have adopted me as family. In the last couple of years, I made good use of my time. I have made my amends to those I may have wronged, reached out to those I love and let them know how much they mean to me or how they’ve enhanced the extraordinary life I’ve had the privilege of living. The kindness shown to my family and myself has been a true gift. In the last five years, I have been able to reach out to a number of people who have always meant the world to me and only once, did I have a negative experience. I am so fortunate to have friends far and wide that show up in my darkest moments and surround my family with love and kindness. I regret not seeing their children marry, their grandchildren born, or witnessing their dreams coming true. I am confident that the world will continue to spin on its axis as it always has and after a short time, life will go on as usual, but I will be missing it. 

My husband and kids are phenomenal people. I am confident that while there may be a short period of sadness, there will be incredible resilience and growth. Essentially, my job here is done. I find it slightly ironic that I had no intention of being a wife or mother, but at the end of my life, it is the only thing that brings me comfort. I cannot begin to explain the love affair that Marek and I have forged over the last  two and a half decades, and after finally believing that he was really here to stay, we brought two gorgeous, capable girls into this world. I am so proud of Marek and I, two only-children, broke, young and clueless, taking on things like having children, home ownership, careers, life insurance, world travel, and participating in our communities. We were just a couple of broke river guides when we started. In 24 years, we built our own personal Utopia. I feel dying is a betrayal of my commitment to him. I know that he will benefit from a  tribe of friends (and exceptional people) who have assured me they will hold him close. And my girls will rise, both on their own and with a father who is more than capable, plus the wisdom of my sisters. I am grappling with a deep sadness of facing the end of my life. Mostly, I am sad to miss out on my extraordinary family. 

Tonga

I'm a little behind in updating what is going on with our family. On April 11th, I received my maintenance treatment and then jumped on a plane to Tonga! Actually, it was  plane to Los Angeles, then Fiji, THEN Tonga. My mother-in-law knew this was a celebratory vacation of sorts and upgraded my economy ticket to Business Class. It was a total surprise and I was very excited although, the rest of my poor family had to endure 11 hours in economy while I got exotic meals and warm blankets. I felt a little guilty but luckily, I was able to sleep through it.

Tonga was the vacation of vacations. We had a 7 hour layover in Fiji so we rented a car. It's right-hand drive in Fiji so driving is a little challenging. Marek undertook the right hand drive. My left-right designation center is still a little "off." We drove to a beach in a touristy part of Fiji. One thing with right-hand drive is that the turn signal switch and the windshield wiper switch are completely opposite, so every time we wanted to turn, Marek would turn on the windshield wipers to let the car behind us know we were turning. It became extremely entertaining. The weather was tropical hot, without a cloud in the sky, so a rental car driving down the road with it's windshield wipers on was a bit of comedy. Fijians are a wonderful, happy, culture. I'd like to think they were laughing with us.

From Fiji, we went to Tongatapu and stayed at a resort called Ha'atafu where the food was amazing. The guys went fishing and brought back 20 yellow fin tuna which were as big as Zoe. The water was azure blue with a reef right off of the beach. Here, we figured out that Tonga is the playground for Australians and New Zealanders. Apparently, it's only a 3 hour flight. Needless to say, we met some cool folks from down under. We spent Easter Sunday at Ha'atafu and attended a Tongan Church Service. I was blown away by this experience. Tongans sing! They sing from the core of their being. The depth of their singing was so impressive. The men sung in strong baritone and the ladies harmonized in varying octaves. You could feel the music.  No instruments. No organ. The service was held in a one-room church composed of cement block. Nothing fancy except for the decorations of flowers and brightly colored ribbon that adorned the altar. I loved the singing. It was all in Tongan so I didn't understand a word, but the singing.....

Our next stop was the Ha'apai island group where we hooked up with the folks from Matafonua. It is quite possibly the most beautiful place I have stood. The water was so clear and the color varied from aquamarine to azure blue to a turquoise color I don't even know how to describe. We snorkeled, kayaked, swam and shelled on its white sand beaches and the uninhabited island across the channel. Again, we got to hang out with the Aussie and Kiwi guests and laugh about or perspective governments. We were there 8 days and I didn't want to leave. The coral was so bright and alive. The reef fish and leopard sharks were abundant and unphased by our presence. We found beautiful sea treasures that we brought home. Matafonua was a dream. It has ruined me for any future trips anywhere else in the world. I just want to go there and stay.

Finally, not sure if I mentioned this, but Marek has always wanted to sail. (And I've always wanted to call him "Sailor"). For a christmas present, we sent him to sailing school where he got his license to sail, navigate, and charter a sailboat under 50 feet. Then we went to Tonga, chartered a sailboat, and sailed for six days through the Vava'u group of islands in Tonga. I was totally stressed out because the water changed in depth frequently. I was horrified we'd run the boat aground and be stranded somewhere in the South Pacific. I'm realizing now how that wouldn't have been such a bad thing. One morning, we woke up and the motors wouldn't start. Stella says, "'Let's go sailing,' he said. 'It'll be fun' he said." It's the new family joke. Stella and I were the slightly stressed out portion of our crew wondering if Marek could really sail or lay down an anchor. He did, but we chided him anyway. He did a fantastic job keeping us off of shallow reefs and setting anchors in solid places. My husband is a sailor. Hey sailor.....

Our post winter, post chemo, post radiation Tongan adventure was everything I had hoped it would be. Tonga is one of the most beautiful spots on the planet. Untouched, unspoiled, and shared by the people of Tonga who are so friendly and kind. Hopefully, Hilton or Marriott or some big hotel chain never finds it. For now, Darrin and Nina are sharing Matafonua selectively with the rest of the world as they take care of their little slice of paradise, and I am so incredibly grateful to have stumbled on to this place. I'm pretty sure there is nowhere more beautiful and peaceful in the world. If only they had a monthly rate....