Every heart, every heart
to love will come
but like a refugee.
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
I’ve been holding off on this entry for several months. Why do I feel like I’ve said that before? When living a life in two-month increments, things can change quickly. As I look back at my life since December, SH%T has been crazy to say the least and not in a good way. As I write this though, happy to be writing again I’m listening to the seagulls fly above the cottage up in Maine.
Since May, I’ve had two rounds of full body scans. Likely due to my slightly pessimistic nature and not wanting to jinx anything, I withheld the results until now. As of May 18th, I had for the first time since my cancer spread to my brain, a stable scan. Not just a stable scan but a 16% reduction in tumor sizes. After just 5 weeks on the clinical trial chemotherapy, Palbociclib (Ibrance), provided by Pfizer, there was a 16% reduction. This is worth repeating! I remember driving home that day with Mom, texting and calling my closest friends and family about the results. I remember it was also quiet in the car. It was quieter than I expected. I was reminded about not having expectations in Cancerland. Even a stable scan can bring up some heavy issues.
Everyone kept telling me to celebrate but I was remembering that it was this time last year that there were brain tumors that were missed. I felt a quiet joy. I felt confused. I felt exhausted. I felt a little bit of anger actually. I felt the bitterness of my life. I felt the cancer rollercoaster. This is not the normal ride that we expect from an amusement park. The closest I can come up with for a comparison is the ride that just spins around in circles over and over again, taking away your breath. The cancer version of this ride is a little more extreme. When it stops spinning like a roulette table it’s not red or black, you’re either dying or living. As of July 20th I had a second set of stable scans. The clinical trial is working and working really effing well. I have been asking in my silent prayers for more functional time and I’m being given that by taking this drug.
Let me explain a little more because I’m not sure that it’s as clear as it is in my tumor filled brain. Back in March when I received the news of the further spread and when the clinical trial began, I was scared beyond what I’ve been thus far in this journey. Words like hospice, lawyers, wills, decisions, palliative care, were being mentioned. Life wasn’t looking so good or the near future and I wasn’t even close to ready for that. I’m still not. From one day to the next, sometimes my head just spins with the constant thoughts of “yes, you’re going to die” or “no, you’re not dying yet.”
That weekend with my hands in my garden and a good motorcycle ride in the sun, I finally felt it. I felt happy. I felt the relief. I felt my breathing change. I felt the excitement. I believed the doctors and I believed in the results and I believed in the trial. On the way out of the neuro oncology unit that day at Mass General Hospital, I stopped in to see my two favorite vampires (phlebotomists haha). I wanted to share the news with them. They see me so often but yet rarely hear the results, let alone good ones. Ann who follows my blog and makes me smile with her kindness and funny Irish family stories in Boston. Lin, who stuffs my pockets with Swedish Fish because she knows I love them and there are never any left in the candy bowl. Come to find out, the Swedish Fish are actually brought in by a fellow patient. I think I will bring more for the supply. Those hard round candies taste like crap.
While in the lab sharing my good news, I met a woman with stage IV ovarian cancer, who also received good news that day. She and her husband travel from Washington DC to be part of a different clinical trial here at Mass General with the same neuro oncologist. She has also just found out that she has had a 16% reduction. We celebrated together in the lab and offered each other hugs and smiles and congratulations. These are the moments that are permanent happy memories for me in Cancerland and moments I recognize don’t happen often around here. Maybe I should play roulette number 16!
In the last year, but really the last 6 months, I’ve learned so much about myself and made sense of so much, specifically my past. You know, those dark moments we like to forget and always wonder why we made those decisions or dated that guy. I’m getting closer to moving forward towards my future instead of partially staying stuck in the past with these sad memories, accepting the space that is me and accepting my past. I’m coming out strong. The emotional side effects of cancer are forcing me to look back and make peace with non peaceful events. I can feel myself evolving and I’m running with it.
It’s amazing what happens when my brain relaxes and when I open my heart. I’m having yuge moments and realizations. Through talk therapy I learned the significance of the word Safe. I learned what this word has meant to me my entire life and now. From a very early age I had to be strong. Yes, it may be a bit cryptic but I’m a bit cryptic and some of these sad moments I refer to are just for me. Now more than ever I have the need and desire to be true to myself alone. It took a bit longer than I hoped but I’m here now.
Those chapters come and go and pages turn. But it’s definitely time for some of those chapters to be closed. My therapist says I’m not coming unglued; I’m piecing things back together, that sometimes a story needs to be changed just like the ending. Earlier this year I was experiencing Fight Flight Freeze once again, a common reaction to living with PTSD. I was frozen, for awhile. Im de thawing now…unless I get bad news in two months haha. Recently, I read a not so happy story of a very young girl who was diagnosed with cancer. She took her life and left this note for her family behind a mirror in her bedroom. A portion of the note read: “Happiness depends upon ourselves. Maybe it’s not about the happy ending, maybe it’s about the story. The purpose of life is a life of purpose…” I hear you and I’m listening, with a lump in my throat. You should still be here. This is a note for all of human kind, especially now. For a very young girl, she left an incredibly brilliant and beautiful note that we should all hear and listen to.
I finally feel like I don’t have to apologize for the path I’ve chosen or the poor decisions I’ve made at times. I tend to follow my heart and less my head and I’m not sorry, anymore. This is me. This is my spirit and this is my story. I’m educated. I’m traveled. I’ve loved and been loved. I’ve followed love all around the world. Now I follow me. My desire in this life now, is to find peace wherever and whenever I can, whether it’s here, Hawaii, Panama, New Mexico, Iceland, Costa Rica or Maine, that’s where I’ll go, that’s where I’ll be. My suitcase isn’t full of the crap I’ve been carrying around my whole life anymore. My suitcase is now a 4 pound carry on with a bathing suit, a camera, a notebook, some rocks and shells and all the beautiful moments of my life, now.
I’m holding on to some pieces of who I used to be though, the better pieces. I’m coming back together and some days my puzzle pieces lay still on the table and that’s OK too. With an open heart and an honest relationship with a healer in my life I’ve been rewarded with clarity, understanding and acceptance. I’ve felt the deep need lately to revisit my past. I guess when living with a terminal illness at this age and time in my life, I felt the need to re evaluate past situations or traumatic events that have had influence over my person and my character. It amazes me sometimes how little but yet how much I’ve changed over the course of my life but more specifically in the last couple years. I think the parts that remain the same; the core of me, the center of my being and where I continue to receive inspiration are exactly the same and I like that. I’m keeping the best of me and burning the sad moments that never made sense until now, just like a phoenix.
I feel euphoric some days, liberated, liberated from myself, from my past. This is happening because I made the decision to go there and say I’m figuring this shit out and making sense of it and moving on. It was a choice I made. I tell my healer/therapist how grateful I am for her presence in my life, for being the sounding board for my personal evolvement, for providing the safety in talking about my saddest times. I think it’s important to tell people how much you value them. I don’t take that relationship or what she does for a living for granted, ever. With her encouragement and motivation I push through the tough stuff and wow it has been worth it! The feeling in this change is that I haven’t necessarily forgiven those who have hurt me in one way or another, I’m just not angry about it anymore and that’s huge, for me. One step at a time. I’m acknowledging and accepting the life I’ve had, the choices I’ve made, the people who have caused me pain and it’s freeing.
Back in June, my family got together and had a big party in New Jersey. On the drive down with my Mom a sad thought occurred to me. I made a list of all my female relatives in my family that I know of. The current statistic of breast cancer diagnoses is 1 in 8 people will be diagnosed, men and women, don’t forget. Unfortunately, this statistic has not dropped. Of the 60 approximate women in my family including aunts, cousins etc., about 8 could potentially develop breast cancer in their lifetime based on these current statistics. This isn’t OK with me!!! I don’t want this to happen to anyone I love and cherish.
I worried about putting this part in here but it’s a real issue and I have absolutely no intent to scare my family or friends but to educate everyone about the dangers of this illness. I have a book I leave on my coffee table and I use as a source of answers, called A Guide for the Advanced Soul by Susan Hayward. When thinking on this topic and the inclusion of this, per instruction on the back of the book, I opened to a random page and this was the thought to my concern, written by Gita Belli, “Everything I do and say with anyone makes a difference.” There was my answer.
This is why that statement is true. This is a drawing, not really but you get it, of a restaraunt that I stopped at recently to have a drink. Walking in, there was a woman sitting there with a scarf on her head. About 15 minutes later well into my glass of champagne, I felt a tap on my shoulder and heard my name and I realized, I knew her. We used to work together, I just didn’t recognise her. She has breast cancer and is just starting her treatment. Another friend was there, whose mother has breast cancer, there was me and then another woman on my right I spoke to because I recognised her from the garden center. She also has breast cancer. Please make it stop. I guess Monday’s are the day for us Breast Cancerful’s to have or need a drink.
Traveling to NJ the following weekend to visit family was intense in a beautiful way. I realized that weekend that I need to accept my own limitations and have respect for my health. On the day my Mom and I arrived, we had tickets to see Sigur Ros in Philidelphia, an Iclandic band we have both grown to love since our trip there. I was tired and I took a few minutes to figure out if I should go or stay and rest but also have more time with my family. We decided to miss the show. The deciding factor for me was the fine print on the ticket that said “laser light show”. My 8+ brain tumors don’t need a laser light show. Disappointing people is hard and making decisions to take care of myself sometimes means missing things and losing money haha. It has become very important for me to have this balance in my life.
That whole family weekend was full of reconnecting and love and for me so much more. Most of my cousins have now gone on to have their own children, mostly girls but a few adorable boys. There’s a new generation of our family. I was reminded that weekend that my line will end. Theres’ will keep going. There were so many moments, when sitting on the side of my Aunt’s pool, just observing, that I felt the surrealness and beauty of it all. I was watching us as kids only now we’re the adults. I realized that growing up in NH vs. PA/NJ gave me a different relationship with the entire family. I accept that now. It’s difficult sometimes but family is family and I love each one of them with my entire heart.
After the family party I heard and realized that because of the distance many family members were concerned about how I would look, being as sick as I am. I got a lot of “You look so good”s, which I appreciated and understood. It makes me think about change in life, in a person, in me. I am still the same despite cancer, careers, passions, lifestyles, tattoos haha. Distance is hard and especially even more difficult during hard times, like illness. Most of my family never saw me sick, sick. I think about the preconceptions and stigma humankind has about illness. It makes me kind of happy to show my family, to show the world, that terminal disease doesn’t always look ‘terminal’.
On the drive home my Mom and I discussed this topic and whether or not it was the right decision to stay in NH when I was little. We decided it was. I’m grateful that my Mom was so brave during a time when returning to a ‘safe’ place would’ve been comforting. I think about my Mom and our relationship and our similarities and at times it’s kind of laughable. The same thing happens when I spend time with my Dad. I see the similarities. I also see the differences and I like that too. See the pics below of our high school portraits.
Through talk therapy, private thought, social interactions, getting older, learning and evolving, I’ve realized a lot. I think this has to do with the tiny bit of pressure I feel to “figure it all out” and fast. I discovered I may be an emotional introvert and complex at times but there’s good reason. I’m not shy. I listen and observe life. I’m sensitive, caring, dedicated, generous, curious, giving, compassionate, strong-minded and fresh. I have faults just like everyone else. I’ve been called a paradox, which I totally can understand. Per Conde Nast Traveler I may have ‘vagabond neurosis’ which since the year 2000 has become a legitimate disorder. The definition states: “sufferers have an abnormal impulse to travel: they are prepared to spend beyond their means, sacrifice jobs, lovers, and security in their lust for new experiences.” Sounds about right. I’ve been doing that since the age of 18 I believe.
I learned to love traveling when I was a young girl. Although I didn’t necessarily learn to love traveling, I just did. Love of travel runs deep in my family, on both sides. My parents and Grandparents provided the influence for my vagabond neurosis. Growing up I visited Germany and the Caribbean, Italy, the west USA. In my adult and Cancerful years I’ve seen Turks and Caicos, Iceland, Mexico, Spain, Amsterdam, Panama, Costa Rica, Hawaii 5 times and Africa. I’ve driven across the US three times, taken a train across once and have seen every state except Alaska and North Dakota. I have speeding tickets in more than 5 states and in more than one country;). I’ve lived in Oregon, NH, PA and Australia where I ultimately received my Bachelor’s degree.
I don’t want to survive cancer and life. I want to live. I was taught early on by a fellow Cancerful and a very good friend that we need to try and just cure moments or an hour or maybe even a day. I get so much inspiration from people I’ve met that are also going through this experience or have. These people inspire me to live an authentic life. Many of the Cancerful young adults that I’ve had the blessed opportunity to meet are choosing to change their lives and do something better, something more self less and self fulfilling. For many of us, cancer gives us the motivation to reach for those dreams we’ve always had, just a little faster.
Quality of life for me means being able to travel and living out my dreams the best I can. My dreams always included the rest of the world and being part of it. About two years ago I decided to leave my job. A job I had been at for 8 years or more. The people I worked with became family, quickly and leaving was not an easy decision. I took a leap of faith that everything would be all right. On a yoga retreat in Costa Rica later that month I realized I had made the right decision. This was my first step towards my authentic life. I was in remission. I sold my home. I broke even. I wanted to live smaller, lighter. I just needed to figure out where and I was being called to New Mexico.
Six months later and less than a year in remission, my cancer spread. I left my job because I knew underneath it all that I wasn’t done with cancer. Try explaining that to your boss, who is also a doctor and someone that was like family. I don’t think he necessarily understood why I left but I just knew it was the right thing. I left my job because I knew I needed more and I knew my time could be a lot shorter than I once thought. In my non-Cancerful dream life I would’ve loved to be a photojournalist for National Geographic or the NY Times or something like that. Dreams… Maybe what I’m trying to attempt with this blog is a sort of photojournalist project in some ways, just about me instead of war torn countries or wild mustangs in the West or birds of the Galapagos. Oh and I might as well tell you at one point before I decided to go to college, I interviewed with the Marines. I had a desire for military for some reason or to be a police officer but I think I’m pretty happy with the path I took.
I’ve had the great luck of meeting so many wonderful people on my travels, many of whom I still keep in touch with and many of whom I have special relationships with. At this point in time finances make living the life I have come to love difficult. I’ve been re evaluating my dream destination list. For six months this year cancer stopped me from doing what I love but it didn’t save me any money. I still have a trip list, don’t get me wrong, but instead of French Polynesia there’s the Maldives and instead of Vietnam or Bali there’s the Canadian Rockies and Kauai as much as possible and Alaska and North Dakota, my last 2 US states to see. I just need my cancer to give me about another 12 months to get it all done! 😉
So, how do I feel now, with two sets of stable scans behind me? I feel pretty wonderful. My body is in rough shape from so many months of inactivity and so many months of chemotherapy everyday. I’m getting past the worst of menopause with the help of acupuncture, massage, reiki, yoga, chiro, supplements and I’m finally back to New Hampshire Power Yoga! Recently, one of my breast oncologists gave me a beautiful gift and I wear it almost everyday to remind me of the kindness I have found along the way in this world of cancer. These healers, all of them, are helping me get through everyday. They’re helping me live and they respect how I want to live my life. I have found the balance between eastern and western therapies finally and see only progress from here.
“…And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” Anais Nin
Picture taken by Liesl Clark of Claris Photography.
Now onto Kauai, the 1st trip I have taken in 6 months. I needed it to be here. I needed to restore my soul and my body. I arrived onto the island around 8:30pm and as I walked off the plane amidst a swarm of tourists, into the open-air, the humidity hit me in the face and I smiled. To know that warmth and sunshine are waiting for me is the perfect beginning to the second half of my year. After the first morning, my first coffee, reading and writing for a bit, I felt myself coming out of the freeze. The last five months have been some of the toughest months of my life and when my doctors told me I could take a trip I wasn’t surprised that I went running back to Kauai as fast as I could.
I have connections there. I’ve had a connection there since 1995. For a long time growing up I believed all I wanted was to work with animals. I believed I wanted to go to a university in Hawaii. My father has been to Hawaii 18 times. My Mom took me when I was 16 and we spent an amazing couple weeks together going from island to island, taking tours of the schools. After deciding not to go to college right away and moving to Oregon to begin college a little over a year later, Mom and I took a trip to Maui. This trip happened after a terrible and horrendous family tragedy.
This is what happened after that trip in a very shortened summary. We took a snorkeling trip one day, 17 years ago in Maui. At the end of the day (that I spent hanging over the railing trying not to barf) the employees passed out internship applications for the Pacific Whale Foundation. The options were internships in Hawaii researching the dolphins and Australia researching the humpback whales. I couldn’t believe this was happening and as soon as I returned to Oregon I filled that baby out for the Hawaii options and I didn’t care about the cost.
This is where the story turns in an unexpected direction, literally across the world direction. I didn’t get accepted for Hawaii. I got accepted for Australia. I ended up moving to Australia immediately after that. Love may or may not have had something to do with that. I lived there for three years, in Hervey Bay, Queensland, bought an old home a street from the beach, renovated it, had dogs, chickens, parrots, snakes, spiders and went to the University of Southern Queensland. I had an amazing life there and the people that became my family I will never forget and I will love forever.
I did not return to Kauai until just last year. I feel like in a full circle kinda way I may be going back to where I belonged. It was on this recent trip I realized how many connections I have to the island. I won’t list them all but there are a lot and I’m a huge believer of signs. I see kindness around almost every corner in Kauai. I have been completely accepted. I’m not a tourist anymore there but I’m not a local. I’m a locust haha or lourist. On this trip someone born and raised on this island, which is rare, said to me, “you can’t be here if you’re not strong in spirit”. I believe this whole-heartedly. Everyone I’ve met there is strong in spirit and so am I.
Why do I keep going back to Kauai? Because, I’ve had more consistently cured moments and time there than anywhere else in the world besides New Mexico and Costa Rica. I recognize and respect this pull, this effect. I recognize the full circle and the connections through people here even. This island makes me believe that there is something to be said for fate and destiny. From every corner of Kauai I have a connection and it’s not going unnoticed.
There seems to be a parallel between the people I have met and who have come to stay. There’s no judgment. People are always laughing and hugging and sharing their lives with each other. I had the privilege on this trip of meeting two women that are descendants from the oldest and most royal Kauai families. My cheeks hurt from laughing after talking with one of them. Turns out we share a cancer connection. I felt honored and blessed to be included in this celebration. People who I’ve met there tend to have had tragedy in their life at one time or another. They’ve healed here in this place. Maybe this is part of my connection to this magical island. I understand the intensity in which the people living here cling to their land and to their customs and to each other.
Kauai is the oldest of the Hawaiian Islands and volcanic in its birth. It’s the 21st largest island in the USA. Legend states that the island’s name came from a Polynesian navigator and that the word means “around the neck”, as in how a father would carry his favorite child. Kauai has quite the volatile history. Kaumuali’i originally ruled Kauai and the island of Niihau. He resisted takeover by King Kamehameha for a long time but in 1810 agreed to join with the other Hawaiian Islands. In 1815, Kaumualiʻi led secret talks with the Russian-American Company in order to gain Russia’s support against the King. These discussions with the Russians ultimately failed. The United States took over Hawaii in 1893. Also, a little known fact is that the U.S. Navy’s “Barking Sands” Pacific Missile Range Facility is located here. Based on current world news this is probably a good thing.
Prior to all of this instability in rule, the infamous Captain James Cook landed in Kauai in the late 1700s. At first the relationship between the Hawaiians and Cook was peaceful. After a long story about Cook interrupting a Hawaiian ceremony and taking advantage of the natives, they were discovered as liars. Due to the interruption in the ceremony the Hawaiians believed Cook and his crew were immortals. Once found out, Cook was killed by local Hawaiians after a chief was shot and killed. Oh man I hope I got that all right or even close to right!
Speaking of volatility and frustration I want to vent about something as a traveler and as a woman very quickly. Hell, this blog has gone on long enough why not a bit longer! Now don’t forget after reading this that I’m an independent woman who was raised by an independent woman and who does not need assistance but would at least like to be asked. I have noticed during my travels over the last couple years that no one helps each other anymore or very rarely do I see it. I help people whenever I see someone struggle. A flight attendant has even thanked me for being so nice. WTH is wrong with people? Although this is not an answer I necessarily need the answer to. It’s an answer I already know. I didn’t experience anyone helping me as I struggled with an effed up ankle, shoulder, hip, knee, neck and back, oh and terminal cancer but I get it, I look fine. I could’ve asked for this man’s help sure but he should’ve just gotten off his bleep ass and helped a female. So after I awkwardly almost dropped my suitcase on his head and my face flushed with frustration and secretly wanting to drop it, I looked at him and said, “Thanks for your help.” I’m still fresh. Which was confirmed a few days ago when I yelled at a man driving like a lunatic in the mall parking lot. I saw him once inside and said hey, you should drive a little slower or you’re gonna hurt someone and he looked shocked and actually apologized. Holy moly menopause. I’m not even going to talk about how brutal chemically induced menopause is but I will say that acupuncture has made going through it tolerable and so that I don’t close line people in the neck that make me upset. Don’t even get me started on the body shattering, mind numbing hot flashesAny of you watch Sex and the City and remember the part where Samantha is on stage giving a breast cancer speech and has a hot flash and tears off her wig?…yeah it’s that bad.
Back to Kauai. On the surface it doesn’t look like it but there is a dark side to the island, as I believe there is everywhere. In the words of a friend who lives on the island, “Stupid tourists do stupid things on sacred land.” Due to the remoteness of Kauai and the landscape, Kauai doesn’t always make it “easy to get to know her.” During time and time again of attempted colonization, the introduction of diseases, weapons and STDs, entire villages were at times wiped out. There is a “rooted distrust” of outsiders for some. As a local living on the island, there is a constant battle to survive here. Land prices have escalated to the extent that the people on the island have a difficult time reaching financially. Down every street there is property after property that sit empty or for sale. Imagine the bitterness for the people who live here to have to see these enormous empty homes day after day or end up leaving their home here, their island, for the mainland. With the sugar and farming industry declining, some of the best jobs on the island are in the tourism industry. “Paradise isn’t always pretty.” Author unknown
Now, Kauai may have a little bit of a dark side but don’t we all? Kauai is also one of the most spiritual places I’ve felt. The Dalai Lama talks about two areas on Kauai called Anahola and Polihale that he wanted to visit on his 1994 trip. Apparently he told his guides that in the ancient Tibetan tablets, Anahola is where souls enter the earth and Polihale as the place where souls leave. The original spelling of Anahola was “Anehola”. ‘Ane’ means the breath of life, and Hola means the hour. The two words together translate as ‘birth.’
Over 20 years ago, when my Mom first brought me to Hawaii, she had a ring made for me with my Hawaiian name, Aulani. In Hawaiian we were told this name means the messenger of a chief or a place that speaks with great messages. There is another interesting translation of the word Aloha. Alo ha in Polynesian means to share breath. It’s not just a word for hello and goodbye. It’s also a word that can symbolize love, compassion, mercy and kindness. The people who live here and have grown a spiritual connection to the land believe in balance and harmony. That is what Kauai is about for me…balance, healing, connection.
What I’ve found during my travels there is that, especially on the North Shore, there is a small town vibe, despite the overwhelming number of tourists. Everyone helps everyone and everyone knows everyone (the coconut express haha). There is always laughter and physical connection. While there, a new friend called me Sister. I didn’t say anything at the time but I felt this might have had a deeper meaning. The next day I asked my other friend about it. Her response was, “She called you Sister?” I said yes as I secretly was shaking in my flip-flops about the meaning. It’s a good thing; it’s a good thing to be called “Sister”. It means acceptance. I cried a little when I learned that.
This trip back to Kauai was magical. Anyone who is familiar with the weather in Kauai knows that 10 straight days of sunshine on the north shore was a gift from above. Every day was perfect. Every day I went to a different beach, saw friends, had good conversations and laughed a lot. I celebrated the 4th of July at Anini Beach. While at the party I slipped away alone and walked the beach, with a glass of champagne in my hand, reflecting on the last few months, reflecting on my choice to be here vs. anywhere else, reflecting on the peace that this island gives to me over and over again.
Here are some photos from my trip to Kauai.
Walking the beaches and just mopeding down the road, I am encircled by beauty. I think about my illness and being ill and living the best I can, when I can. I think about my oncology team and how they have worked with me to give me this freedom. They understand my goals and my dreams and how important quality is for me. I reflect on a TED talk that I recently listened to. I always try to reference these talks because there are so many people in this world that are able to put things into perspective in a brilliant way through story.
A TED talk given by Luci Kalanithi in 2016, called What makes life worth living in the face of death, accomplished this for me, the perspective piece. She tells the story of her husband Paul, a neurosurgeon who was diagnosed with stage IV lung cancer. After his diagnosis, he turned to writing. I wish I could just put her whole talk in here but the biggest quotes I took away were these:
“…watching him reshape his identity during his illness, learning to witness and accept his pain, talking together through his choices, those experiences taught me that resilience does not mean bouncing back to where you were before, or pretending that the hard stuff isn’t hard. It is so hard. It’s painful, messy stuff. But it’s the stuff and we get to decide what success looks like.”
From the perspective of a loved one she said “it was almost like there is peace in the passing because the illness can be so torturous”. This talk made me feel better about the “messy stuff” and how we get through it. Everyone’s different. She validated how crucial it is to be honest about the emotional and physical suffering we experience. She provided an outside perspective, which made me think about the pillars in my life, going through this journey with me and their perspective. To all my pillars, friends, family, thank you, thank you for being here with me for this journey. I know it’s not an easy position to be in and I know that you are all being incredibly strong for me. Your strength gives me strength.
So, now with a successful trip to Kauai completed and some good stable scans, I’m feeling really good. I’m still taking chemotherapy everyday and some days really suck but most days are good. My Dad and I have just booked a trip to Yellowstone and the Grand Tetons and my Mom and I are talking about a trip to Alaska next summer! So as long as Pablo keeps working (the name my chemo has been given haha) I’ll make it to these places and back to Kauai as soon as I can. Happy summer and thank you for reading! XO
That you are here-
That life exists, and identity:
That the powerful play goes on,
And you will contribute a verse.