ACTIVATING A VILLAGE W/ SAKAI
When Sakai first reached out to share her story I was thankful because I’d called her by name in my mind when R&V was still bubbling up behind the scenes. In our chat tucked away in a private message on Facebook I didn’t waste any time telling her about the first memory I had of her when we were kids over 25 years ago and I’m not at all surprised with how closely this specific memory is connected to the details of Sakai’s journey — because that’s been happening quite a lot for me. Weeks before we talked I told her: “…there is one thing that sticks to me when I remember you from childhood, you telling me… the importance of looking out for your friends. We were kids, but no one ever told me I had to have my friends backs and hearing you say it was just like wow... ok, that makes sense.” Memories are so intentional and built into them are the answers to the questions we battle with and the training we need for the hardest times. Young Sakai, a neatly dressed tomboy at only nine years old locked into my memory the foundation of her journey 25 years before we could talk about what she’d build on it. That and the thickest, shiniest long dark braids you ever did see.
Towards the end of 2015, Sakai would enter into the hardest season of her life. After tragically losing her younger brother to suicide, she’d learn after a long daunting search for answers on health concerns that she had congestive heart failure and as soon as she started gaining some control over her life, endometrial cancer. She was faced with slow moving or little to no solutions to remove the cancer she found out was aggressively destroying her body. Sakai says it was her education and the ability to advocate for herself that saved her life but more importantly the connections and relationships she formed through a community of people she lovingly and firmly calls her tribe, her troops and her village. Sakai’s journey is a reminder to me, and all of us to consider the people we can turn to and to ask ourselves if we are a part of an army our friends and family can count on. Are you creating a network that can and will show up for you? As I went over the notes of my conversation with Sakai, I have no doubt that the order of her steps and the values they created in her life were fuel in overflow storage for a journey that would require dedication, the questioning of authority, the refusal to give up, hear “no” and most importantly a path to find the support of people who’d go to war with and for her — even unto death.
SAKAI
Eloquent and soft spoken, Sakai’s words are precise, intentional and melodic. The truth is, sis could have logged in and wrote her journey her own damn self how smooth she is. Her thought process, word play, passion and intent would have melted us down. She radiates a calming and familiar energy and while talking to her I actually took note of how soothing speaking to her was, like a guided meditation of sorts. She believes in both “God and therapy”, the journey of spirituality and in miracles and transparency. What impressed me most though was my being able to tie my oldest and long lasting memory of her, someone I haven’t seen in decades to the current self awareness and victory she can fully claim. She’s always known. It’s always been there.
Raised in Queens, NY with her mother, grand parents and her younger brother Sakai was brought up in what she calls “a simple middle class life” in a very private Baptist family. Little Sakai pulled in straight A’s all through grade school and in the 5th grade received an invitation to test for Prep for Prep, a program founded in 1978 which scouts talented minority students and provides them resources and access to NYC’s top private schools. Although her mother and grandmother were against pushing Sakai further than she was pushing herself naturally, a meeting Sakai and her grandfather had with a guidance counselor who told them “not to waste their time because she’d never make it” in the program drove them to show up and out. I’m sure it wasn't the first “No” Sakai heard in life but it’s a pin in her story, it’s where she first learned to fight to be where other people may believe she doesn’t belong. She learned to question authority, no one else could say what was possible. Sakai was tested and through Prep for Prep enrolled at Nightingale-Bamford, a small all-girls independent school in Manhattan. Of the experience she says “It was definitely a different world from what I was used to, but I was taught at home that I belong in the places to which I have worked hard for and earned my entry, and so honestly despite the economic disparity, I never felt uncomfortable there, and I was blessed to have amazing peers and teachers there who made me feel at home.”
Her entry into NBS gave her a pass into a new world that introduced her to people and possibilities that would change her life forever and encourage in her a will to accept any challenge. Hearing she was “too urban” for a semester of living, working and learning at an organic farm in Vermont drove her to apply and go anyway after a presentation in her junior year by The Mountain School. In high school, she applied and was accepted to Middlebury even though yet another guidance counselor didn’t think she’d get in, or do well. She did, both and it was at Middlebury that Sakai met her best friend, Will. A symbolic name for a best friend to have in a journey that required so much of it, but we’ll get there.
LOSing it all
In 2015, on Thanksgiving Day, Sakai’s youngest brother battling with internal struggles took his own life. His death and the cause were extremely hard for Sakai to process, especially when her ten year career as a guidance counselor vowed her to mentor her students toward overcoming their struggles and living their greatest lives. Not having the opportunity to do that for her brother was devastating to her and was the start of a period of her having to deeply reflect over her life. As hard as things were then it would only become harder when the next year her physical health started to decline.
Working part time and on Medicaid at the time, Sakai went to numerous doctors. She was extremely fatigued, had low energy but had also began putting on a lot of weight. Sakai recalls that time of going back and forth and being sent away as a symptom of the stereotypes of people who are on Medicaid. The quality of Medicaid and health care gave her no serious attention or regard, instead triaging her and making what she felt were assumptions about the quality of her lifestyle. Each doctor recommended she lose weight and sent her home but ran no tests. If she could do it all over again, she said she would have advocated for herself even more and fought for a more definite answer to what she knew she was feeling.
Then, one day in January of 2017 she had a bad cold, or so she thought and feeling worse asked her friend to jump in a cab and ride with her to the hospital. Again, tests came back showing nothing was wrong and they were sending Sakai home once again. On the way back from the bathroom to wait for her discharge papers Sakai was stopped by a doctor in the hallway and asked plainly “Do you always breath like that?” The doctor who wasn’t assigned to her asked if it would be OK to run a few more tests. When the test returned four or five doctors were surrounding her. Her pulse oxygen was 60, where normal levels are closer to 100 and doctors could not believe she was even able to stand. Sakai was admitted. She ended up staying in the in the hospital for 2 weeks and tests revealed that Sakai had congestive heart failure, severe sleep apnea and an infection in her breast that was spreading to the rest of her body which was what was causing her to feel sick. “Mind you, all of this and I was someone going to the doctor monthly” she told me. It was there Sakai found out she was at her heaviest weighing 388 pounds, a number that shocked her. She told me “I couldn’t believe that it had gotten that bad. I think I just totally… It’s like I knew I was overweight but hearing the number… “
The news was an absolute wake up call for her and she said she could feel the energy of her little brother who was constantly on her mind telling her to get herself together. And she did. She started monitoring her eating patterns, watching her diet and began seeing a specialist. Her weight started to come down which eventually resulted in her being able to come off of the heart medication and cleared to have her long awaited weight loss surgery. The surgery was scheduled for September 2017. Then in August, a week before her birthday and a month the surgery she began menstruating uncontrollably. “I thought I was going to bleed out, there was blood everywhere. I was going through so many pads.” Sakai went to see an emergency GYN who recommended a D&C for the purpose of clearing out her uterus to put and IUD in and Sakai looked forward to a solution and some relief. She had the D&C on a Tuesday and on Wednesday she said she received a call from the doctor asking her to come in on Thursday.
Sakai’s calming voice broke free and rose a little higher. “And honestly Kim, I knew. I mean, you don’t get a call like that in the middle of the night. I mean, after office hours. I knew they did the biopsy.”
On August 17th Sakai walked into the doctors office alone — yes alone, saying it was a Thursday morning and everyone had work. It was a “regular" day. “[The doctor] walks into the office and she looks at me and says ‘I’m sorry but you have endometrial cancer’. She told me ‘I think you should call your parents and tell them what’s happening.”
“I actually held it together when she told me at first and I said OK, now what do we do? I think she thought I was in a state of shock, I don’t know, maybe it didn’t settle in at that time.”
The doctor sent her to another room to wait for a referral to see an oncologist. While Sakai waited she called her family and a friend who left work to come and be with her. The doctor came back and told her the next appointment wouldn’t be in over a month. “Something told me, you can’t wait until the 24th”
And this is where Sakai went into action. “Something told me, you can’t wait until the 24th. That’s crazy. You can’t tell someone they have cancer and they can’t see a doctor for over a month. While I am sitting there in this crowded office waiting I started calling the troops to get help.”
“I’ve went to fancy private schools through Prep. I definitely know a lot of wealthy and powerful people but I’ve never used it to my advantage. You know? But this was life or death. So while I’m sitting in this crowded office, I start calling around and asking for help.”
Over the next month Sakai found out that her cancer was spreading rapidly making her so grateful she’d decided not to wait. She also learned that all of her imaging needed to be redone and that she was a very high risk for a full hysterectomy which became the only course of action once they learned how quickly everything was spreading. The concerns over anesthesia and her severe sleep apnea also brought the worry that after being under for so long Sakai’s air passages would be blocked and she’d never be able to breath on her own again. There was a 50/50 chance she’d need a breathing tube, or worse. Doctors she visited wouldn’t perform the surgery and recommended no other options. Then, her best friend Will put her in contact with one of the top oncologists in the country based in California who agreed to do a consultation with her over the phone. “He told me that the only [surgeon] that could do my surgery was the head of gynecological oncology at Sloan Kettering and that I needed to be on his table.” Sloan did not take Medicaid.
“The entire time the one thing that came up time and time again was ‘I know how to advocate for myself.’ I knew that waiting was not OK, I knew that I could apply for out of network approval. My education saved my life! Having interacted with different people and knowing how to think carefully and in a detailed manner, trouble shoot… It’s those skill sets that [everyone doesn’t] have. And it makes me think of how many lives have been lost in the same predicament as my own. Because, ultimately I ended up at Sloan.”
THE TROOPS
Sakai and I talked about our families a lot in our conversation, connecting also on the fact that we both come from very private families. In Sakai’s home she says you really didn’t talk about things, you did as you were told and that was that and you absolutely didn’t take personal and private matters to the streets. “My level of transparency about my illness was absolutely stifling to them. They were none too thrilled. But my transparency also allowed me to utilize my network in a way that saved my life.” It was a friend in medical billing that helped her with the coding that got her into Sloan and of course, Will connected her to the resource of knowledge and information and ultimately her surgeon. Her grandparents stepped in and worried about her financially so during this difficult time Sakai could focus only on her health and her friends and partner she said were there the whole way keeping her company and taking turns at doctors appointments. By the time she’d finally gotten all her approval and sat down in the surgeons office she told him “Doc. It was hard getting here to you.”
“He said to me that he had never had a patient for whom he received so many phone calls from different people trying to get him to take the case. None of that could happen if you don’t share the story.”
So yes, the tribe that resides in Sakai’s village mans phone lines too! Sakai told me when we spoke that she wished she could say that she was fighting for herself, but she wasn't, instead thinking about how “messed up it would be” for her friends and family and especially her student to have to deal with her death. “I wanted to fight for them because I didn’t believe I could fight for myself... Up until that point.” Sakai not only locked in on her will to fight for herself but saw how she could do so by deploying an army that could help her. Getting there was half the battle though. The surgery was still extremely dangerous and not recommended by anyone, including her surgeons peers at Sloan Kettering. With all the work and effort that it took to get Sakai there the idea of leaving her family and friends behind was hard to take in.
“The weeks leading up to it I prepared to die… It is confusing and scary. I say confusing because when you think about living life you don’t think of a life 34 years lived. Then you think, why me? Not wishing it on anyone else, but why me? I had done so much hard work to be well before this diagnosis but it was like, why me again. Then there’s the piece that make you reevaluate things, the relationships in your life. Having to call people. This was the hardest part, calling people who you know love you and telling them, listen this is what I’m going through and I don’t know which way it’s going to go but… Having to tell people that I knew loved me.”
THE DAY
Sakai Troxell walked herself into the operating room on October 31, 2017, a strange day to be confronted with mortality, but I suppose life is just cinematic in that way. Her support system walked with her up to the room and she says she hugged them and held on for what she felt through the heat of their bodies could be the last touch she’d ever have in life. The reality of the moment for her was stilling. It’s stilling to hear it, to think of it. I mean really, can you imagine? I asked if she was afraid, she talked about her faith and the peace she had by then on the final walk towards the operating room…
“At that point I had gone through so many tests, paper work, daunting phone calls… there was nothing else I could do. And not having the surgery wouldn’t have given me any quality of life either because it was spreading.”
Sakai made the decision to not only have her uterus removed but her fallopian tubes and ovaries as well and when we talked about children and what that meant for her she let me know she’d never imagined herself having children traditionally and not only because of her sexuality but because she’d always gravitated towards the idea of adoption.
Her surgery began, the surgery that it took tragedy and loss to prepare her for, a surgery that wouldn’t have happened without the pushing and prodding of a community. When she woke up in the recovery room, she says she immediately felt her neck and mouth for a breathing tube and cried when she felt none, telling the nurses who came to check on her “I’m OK.”
Endometrial cancer, a cancer found in the endometrial lining of the uterus generally affects women in their sixties, so Sakai’s fight made her question a lot even in it choosing to take residence in her young body. She battled depression and leaned on friends including a mentor that counseled her to seek herself, nurture herself and give to herself what she was always so use to and ready to give to everyone else. It created a passion for life and a spiritual connection to her Creator that has made her aware of how blessed she is and how much purpose there must be on her life to be able to cheat death, twice and have the support of her roots and vines to do so.
“I keep evading death and there has to be a greater purpose for that. My work isn’t done here.”
In January 2018 she had her first PET scan to determine her next steps as it related to chemotherapy and radiation and found out from her doctor that they had gotten it ALL, radiation and chemo was not necessary — she was cancer free! And the greatest words from her surgeon, the man chosen by will… all puns intended…
“When we went into the OR that day every other surgeon in the room bet against me. None of them thought we’d be able to do the surgery and that you’d come out ok. But we both proved them wrong.”
What a word. Looks like Sakai was and is the secret sauce.
GIVING UP (?)
When I asked Sakai about giving up and how she kept it all together she was completely honest and admitted that she absolutely went through bouts of depression, saying when you don’t feel well you lose a lot of people, because sickness is intimidating and overwhelming.
“Sickness can feel very lonely. I think people think you’ll need something from them they can’t provide” Ultimately it was her will to push through and not let her village down and the support she received and sought out that helped her stay grounded and balanced.
“Part of my role as a college counselor is I refer kids to therapy all the time. So, I had to put my money where my mouth is. I had to stay grounded and speak to my mentors and extended village, many of whom I realized had went through similar experience and never said anything.”
One of her biggest mentors she said had just finished being treated at Sloan when she stepped in to hold Sakai’s hand through the process. Her words to Sakai, “All the consideration you make for other people and their time and well being, you have to do that for yourself right now.”
Every 6 months she goes back to make sure she is still cancer free. Walking into Sloan she says is depressing yet humbling to see this enormous place that hosts so many people, all of which are battling different types of cancer. Every time she walks through the building she can’t help but acknowledge that she is now on the other side of her journey.
JOURNEYING ON…
Last May Sakai finally had her weight loss surgery and is down over 115 pounds with a goal to lose another 80. She’s schedule for a breast reduction surgery this month and is continuing on her path of living a comfortable, happy and healthy life. “I feel like what I’ve been through is literally a lesson in Carpe Diem” And with all that self care aside she’s still focused on the power of education and the purpose it’s created in her life. It’s made her want to get back to the work that she does, making sure young adults learn how to find their own voices. “So they’re more people in the world that can self advocate, or care enough about others to advocate for them.”
Sakai is doing a professional development course at Columbia to hone her crafts and will attend NYU in the summer where’s she’ll pursue her Master’s in College Guidance. “I don’t believe good things come to those who wait, I don’t believe that. You have to go out and claim it or it will claim you and I learned that the hard way. I believe in transparency because I don’t believe you have to learn things the hard way.”
So, the start of 2019 is looking a lot different for Sakai than 2017 and the reality and hope of that is not lost on Sakai, nor is it lost on me. Our journeys come with bumps in the road but the lesson Sakai is learning about the power of parallel pathing and not journeying alone, about life, advocacy, and community is a seed and water for all of us. And if Sakai’s could wrap up a really hard time in her life into direct advice she’d want us to have to leverage for good it would be:
“Never be afraid to ask for help. People don’t know you need it and want to help.”
“Surround yourself with people who are strong where you are weak.”
For the note of taking care of self, advocating for our bodies, for creating a community of love and transparency and support — we thank you Sakai. Here’s to you always reminding the people you come in contact with, like you did for me over twenty five years ago of the power and necessity of friendship!
#LOVENOTES
For a start to 2019, a new year that’s pre-resolved in new purpose - I wish you a greater you and a greater voice this year and beyond! Thank you for sharing your journey and your notes with me. I’m honored to parallel path with you and to join again here and now, in the best time of your life! I pray you’ll continue to remind people that it’s the power of human connection that saved you and the necessity of humbleness, community and advocacy — and self care.
I’m so excited for the road ahead for you!
Xtra Love,
K…
If you’ve learned anything or found inspiration in Sakai’s journey please like, comment below and don’t forget to SHARE!
“The clarity and purpose that I found after feeling better, I can’t even put it into words.”
— SAKAI TROXELL