Just over three months ago I woke up one morning with an idea. It was an idea for a book. I knew next to nothing about publishing or the book industry, I just knew that there was a book that needed to be written. It was one of those magical moments when you feel like everything in the universe is conspiring in your favor. Within a few weeks, I had a publisher, an outline and I was busy writing. Now just a few months later I am a published author and it feels like a dream!
Those same three months have also been some of the hardest I’ve ever had in Cancerland. My health was deteriorating rapidly and I needed radiation quickly in order to fight back tumors that were rapidly stealing my ability to breathe. Cancer has never made me sicker and some days I wondered what on earth I was doing trying to write a book, about hope, and courage, and resilience, nonetheless, as everything around me seemed to be falling apart.
But that’s life, isn’t it? Can’t take the good without the bad. Today I am celebrating, not just feeling a whole heck of a lot better after treatments, but also accomplishing a life-long dream, one I never thought I would see come true.
I would be so honored if you all would download my e-book today! It will be free on Amazon for the first five days. The higher up the charts we can get this book to rise the more people it will reach, so please download and share this link with your friends! And when you do read it, if you could post your honest review I would be incredibly grateful! Reviews are another way books can get more visibility.
Thank you to all of you who made this book a reality. It took hundreds of people (nearly 800 to be exact) to make this book happen. If you were one of my Kickstarter supporters, thank you. If you were one of my cheerleaders from the beginning, thank you. If you follow this blog and have been watching my journey, thank you. I am so grateful for all of you. I could not have done this without you. This book is for all of you!
P.S. If you want to see the live launch event happening today, July 7th, at 1 pm EST, you can do so by registering anytime before 1 pm via this link!
My heart has been heavy this week with yet another national tragedy. What keeps coming back to me about the tragedy in Orlando is just how young so many of the victims were. I have lost many friends in their 20s and 30s. I myself am staring my own mortality squarely in the face as a 32 (almost 33!) year old.
I think that most of us know we want to leave some kind of legacy behind. For many that’s simply our children and the people we have raised them to be. For others, it’s our businesses we’ve grown and left to another generation. Or perhaps it’s just the loving relationships you had over the course of your life.
What is so hard to swallow when we lose so many people in the prime of their lives is the loss of a chance to leave a legacy. Many of them have left behind beautiful lives full of memories that their families will cherish. But had they been given the choice what kind of incredible legacies would each of these amazing humans chosen to leave behind?
This is a question I ask myself regularly. What do I want to leave behind? I have no children that will carry on lessons or messages they learned from me. I have no great successful business or empire to hand down to another generation. All I have now are my convictions.
I didn’t expect this book or this Kickstarter to turn into my legacy but as the support and the movement grows its beginning to feel like exactly what I want to leave behind. This book is my message to the world, my encouragement to others who will face similar struggles, my testament of to how to LIVE in the face of crisis.
So this Kickstarter has 12 more days left and I want to make as big an impact as possible with the time we’ve got left. To do that, I’ve added THREE new rewards that are all about leaving a legacy behind.
First, I want to get this book into cancer, healthcare, and community centers across the country, places where young adults can borrow or take home the Courage Club. If you are part of the health care system and know just the place that could use some copies for patients or community members then this reward is for you! You’ll get 20% off the retail price AND you’ll get copies at least 6 months before they hit bookstores!
Second, I want to get this book out to young adults across the country. By choosing this reward you’ll be buying 500 copies of the Courage Club that we will donate to hand picked cancer, healthcare, and community centers across the country to get into the hands of young adults who need an injection of courage!
Finally, and most exciting, we are going to be sending up to FIVE young adults on an adventure of their choosing! Not every young adult with cancer has had the kind of incredible support that I have gotten and I want to share the wealth. We have already set up an application system here and you go to the Kickstarter here to support an adventure for one lucky young adult. Making wishes come true is not just for kids anymore!
When I eventually leave this world I want to go knowing I have left the world a little bit braver, a little bit more courageous and a little bit more adventurous than when I found it.
Will you help me to make this happen? Please share this post and the Kickstarter with your friends who work in cancer and healthcare, and with any young adults you know who might want to go on a courageous adventure of their own!
Thank you so much for your support as always. I am so grateful to have such an amazing constellation of love lighting my way, even in the darkest of moments. I’m so excited to share the wealth with other young adult cancer fighters!
Alright, I realize it’s been awhile since I have given all of you wonderful people a real update. I have been avoiding posting about cancer things because there are so many other way more fun things happening, but I figure an update is in order.
First, my last PET scan was not what we hoped. We hoped that the dendritic cell treatment would have been the extra boost to stop progression and at least keep the cancer stable. Unfortunately, the cancer has continued to progress. There is now a small spot on my right lung and a spot that is either on my liver or the lining of my heart. (Apparently tough to tell the difference?).
So what does this mean? Well, on the one hand, I think it means that Andrew and I are slowly, lovingly, cautiously and as gracefully as we can, coming to an acceptance that this cancer is too aggressive to beat. We are doing the hard daily work of holding this reality in front of us as our truth, as painful as that truth may be. It involves a lot of crying, a lot of breakdowns, a lot of anger and pain, but also a lot of love, a lot of living and a lot of taking nothing for granted.
But this acceptance work is being done in a complicated balance (and I cannot explain to you how one even begins to do this work) with equal parts hope, that I will continue to find treatments that will allow me to feel healthy and stay on this earth for as long as possible.
Currently, I do not feel so healthy, unfortunately. I have been dealing with a whole host of difficult symptoms for more than two months now. It began with a chronic cough and shortness of breath that seems to wax and wane. It is almost certainly not the result of the one tiny tumor in my lungs but it could be that tumors in my chest are pressing on my trachea or a nerve that is making me cough. But it’s made any physical exertion difficult. I get out of breath very easily. I can’t work out. I can’t even go up a flight of stairs without some difficulty.
I also have a host of other difficult symptoms that are most likely related to medication I’m on. Being on more than a dozen meds makes it extremely difficult to determine what is causing the problem. But for as long as I’ve had a cough I’ve also been dealing with some really rough skin issues, some really awful chronic back pain, and horrible eye pain that keeps me from using a screen all but a few hours a day (tough when you’re writing a book, running a Kickstarter and telecommuting!).
The emotional toll of these physical symptoms is hard, especially because I am pretty helpless to resolve any of them despite my pretty relentless efforts and pretty much all of them interfere with my ability to do daily activities. I have tried a million things, continue to try a million more things and none of the doctors I’ve talked to have any idea how to help. So I’m sort of alone, helplessly watching as my body falls apart, which has been demoralizing to say the least.
Fortunately, I have plenty to keep me going! First, in terms of treatments, the plan right now is to add a few more alternative/ non-traditional treatments, including twice weekly infusions at my naturopath’s office and a new metabolic treatment. I am also getting radiation in a few weeks. It’s a specialized radiation called cyber-knife and it is super targeted so it will just hit the tumors and not damage much else. Hopefully, this will reduce or completely destroy the current tumors allowing me some relief from some of my symptoms. This is not meant to be a cure, but just a palliative option to relieve symptoms and hopefully lengthen my life. And we are not totally giving up on dendritic cell treatment just yet because of some evidence that radiation can boost the treatment. Basically, radiation kills the cancer cells so you have a bunch of dead cells floating around and the dendritic cells pick them up and tell the rest of your immune system to go find the cancer. Beyond that, there are a few promising clinical trials that I don’t qualify for but we may try and see if I can’t get some of the drugs via compassionate use. I just need to find an oncologist who is able to help me fight for that.
But enough about cancer! Let’s talk about the really exciting stuff!
As many of you probably know I wrote a book called the Courage Club and last week I launched a Kickstarter for that book. Within just 24 hours we were fully funded at $20,000 and I could not be more excited that this book is going to become a reality and that you all, my community, totally rocked that Kickstarter’s socks off!
So where do we go from here? Well, here’s the deal. This cancer is catching up with me so I have gotten really clear on my priorities in whatever time I have left. My life’s work, my life’s mission, for as long as I have, is to get the messages in this book out into the world and to be an advocate and source of encouragement for other young adults with cancer.
With the Kickstarter being fully funded and my book guaranteed to get published on July 7th, I am now ready to take my mission to the next level. Now, my work… our work, is to reach as many people as possible. We have already set some stretch goals that will come with awesome extra goodies for supporters. If we get to $30,000 (and we are OH SO CLOSE!) everyone will get a Courageous Wellness Kit with all of my favorite wellness tips and tricks and an adult coloring book for good measure! If we get to $50,000 I’ll record an audiobook for everyone. And if we get to $100,000 I have an even bigger surprise!
But you are my people, my tribe, my community, and I know that getting extra goodies, as AWESOME as they are going to be is not what it’s about for you. So let me tell you what the rest of this Kickstarter is about for me. It’s about reaching as many people as possible. It’s about finding all of those other people who feel like I once did (or like I still do 3-4 times a week) and getting them a message of life-affirming hope.
I may not get to live a full, long life myself but, perhaps, I can convince others to live fully for as long as they can. In this way, I can get a thousand long lives out of my short one.
My goal, from now until the end of the Kickstarter on June 28th is to get to 1,000 backers. It’s my 1,000 Strong goal. It doesn’t matter if they give $5 for $500. What matters most is that we are building a movement of people who are getting this message about courage, they are pouring it into their lives and they are sharing it with their friends. This is how you build a movement. As of this writing, we are at 334 backers and we have 24 days to go. If we can raise $20,000 in 24 hours I know we can build a movement in 24 days.
So how can you help?
- Well, if you haven’t backed the Kickstarter yet I would be oh-so-grateful if you could pledge, at any amount. The lowest reward is just $5!
- Share this blog, share the image above, share the Kickstarter link (bit.ly/courageclubkickstarter) and ask people to pledge any amount. Just $5, $10 or $25 and they are officially movement makers!
The money is not as important as the movement.
You all have done so much for me. You’ve been there for me through thick and thin. Your support and love and courage is getting me through this difficult, beautiful, painful, incredible moment in my life right now. Thank you so much for all you’ve done. Thank you for continuing to be my family, my community and my support system. Let’s do this thing!
All my love,
(Ahhhh, so exciting! If you’re too impatient, like me, you can go right to the Kickstarter here!)
I have spent the last three years in fear. I am still afraid of this cancer, of what it’s doing to my body and my life. But I am done letting my life be ruled by fear. I am giving equal energy to my dreams and miracles do indeed seem to be happening.
It’s a very strange time for me right now. On the one hand writing this book, launching this Kickstarter, engaging all of you wonderful, amazing, incredibly supportive people to make this book, my dream, come true has been one of the most powerful experiences of my life.
Three months ago this book was just an idea and now, with your help, I am hoping to be able to launch it in just over a month! At every turn all of the pieces have fallen into place with a strange ease that has made me feel like there was a bigger power at play.
On the other hand, I just had the worst scan of my life, my cancer has gotten even more aggressive than I even imagined, I am beginning to run quite short on treatment options and the symptoms and side effects of cancer and cancer treatments have begun to make my daily life quite uncomfortable.
How does one reconcile these two conflicting experiences that are crossing paths in my life? Well, I give each equal energy. I write when I feel good. I rest when I feel bad. I research cancer treatments and meet with doctors and then I work on marketing this book. In many ways the cancer has just made the book more important. This book is my legacy, my love letter to life, to you and to your life.
I would be oh-so-grateful for any support you could lend to making my dream a reality. You can find the Kickstarter here. My goal is to get to 50% funded in 5 days. Campaigns that do well early on are most likely to succeed and I would love nothing more than for this thing to be a smashing success. Once you’ve lent whatever support you can (we’ve got rewards from $5 to $1,000) I would so appreciate it if you could share the link with, well, everyone you know! You can share the link on Facebook by clicking here and on Twitter by clicking here.
You guys are the best. You are my absolute favorites. I love you. I love this moment, for all of its heaviness and all of its magic. And I love this life.
With gratitude and love,
I was just thinking about where I was at around this time two years ago. I had recently had a double mastectomy, was nearing my 17th or 18th round of chemo and I had completely and utterly lost faith in the universe for the first time in my life. I felt that I had been betrayed by life and the powers that be. My life was not at all what I had expected and someone was obviously to blame.
Then I come back to this moment in my life. Tomorrow I will have a PET scan and I could not be more scared. But I am also ever hopeful and am able to calm myself with the knowledge that whatever the results are I WILL find a way to keep chugging along here on earth at least for a while.
I am also writing a book. It was an idea that came in a flash one morning and somehow in the course of just a few days piece after piece began to fall into place. I told Andrew that sometimes I don’t even feel like I chose to write this book. It almost feels like this book chose me.
And now I am all in. I’m financially, emotionally, spiritually, physically committed to this book, to getting it into the universe and I’ll be honest, it is really hard. It’s hard to write about what I’m writing about. I’ve shared a lot in my blog but the really tough to tell stories are all over this book. Sometimes doubt overwhelms me and I wonder who I am to be writing this, who am I to offer advice to all of the brilliant people on this planet? But then I remember that this book chose me and I put my faith back into the universe that there is no other direction my life could be going in right now.
I spent some time wondering, how on earth it’s possible that I went from having no faith in the universe to having all of it, over the course of the hardest two years of my life. And then I realize the answer is simple: it’s YOU. It’s all of you in my life who have held us up, time and time again. You have not once let me down when we turned to you for help. You have made me feel brave time and time again and given me the courage I need to keep writing, to put myself out there and to not give up.
My life is overflowing with unknowns. I don’t know what this PET scan will say. I don’t know what my treatment will look like in a month. I don’t know if I’ll have to up and move to Germany overnight. I don’t know if I’ll still be alive next year. And yet I feel that I am somehow still standing on solid ground because of the strength and determination of the community I have been honored to have along for this ride.
I’m calling this book, “The Courage Club: A Radical Guide for Audaciously Living Beyond Cancer.” I can’t say for sure that this book will be a success but I know, if nothing else, that it feels really, really right. This book provides a guide, through my experiences with Stage 4 cancer, of how to build a really full and meaningful life, even in the midst of a crap-tastic crisis like cancer. I’m writing it for three people: first, for myself, as a reminder that even though it can feel like cancer has stolen some really important things from me that there is still plenty here to make my life beautiful, second, for my fellow young adult cancer ninjas and anyone going through crisis who sometimes need a reminder about just how courageous they are capable of being, and third, for you, my community, as a thank you for all you’ve done for me.
On that note, if any of you are down I would so love and appreciate your support on this new adventure of mine. In order to get this book made and out into the world I am going to be launching a Kickstarter on May 31st to raise $20,000 to cover all of my expenses and I’m going to need the help of anyone and everyone who wants to give it.
I’m working with the most incredible equi-publishing company (that’s halfway between self- and traditional publishing) and they’re ensuring that this book gets the most professional developmental and line editing, cover, marketing, print, and distribution. But it’s not a free process and there are many other expenses if I want to do the hard work it will take to get this into the hands of the people it could make a difference for.
I know $20,000 is an audacious goal, but if this community has shown me anything, it’s that you are generous beyond measure and supportive beyond belief. (Thank you. Again. Always.)
Would you be interested in helping spread the word about my Kickstarter when the time comes? If so, simply click right here to join my Crush the Kickstarter Crew!
I would be so grateful for your yes, your sharing of this movement for meaning-making amidst chaos, your support for those of us who are fighting to thrive amidst the very hardest circumstances.
If it’s not feeling resonant for any reason, I totally get it and love and appreciate you anyway.
Thanks so much for being with me through it all.
I wouldn’t be here without you.
I’ve lost track of the number of times I’ve wondered, silently or aloud, “What did I do to deserve this?” since I was diagnosed with cancer over 2.5 years ago. But every once in a while I’ve said it for a good reason and recently I got to say it for the best reason ever. Many who know me are familiar with my love affair with First Descents, a non-profit that supports young adults with cancer with free week-long outdoor adventures. I went rock climbing with them in 2013 and the experience completely and utterly changed my life. (I won’t keep gushing, although I could, because I don’t want to spoil the video below.) Since my trip I’ve had the privilege of contributing to First Descents’ blog, helping to lead the DC-Baltimore First Descents group and this summer I’m signed up to be a volunteer photographer on a rock climbing trip to Estes Park!
So when I got a call from my favorite FD staff letting me know that they’d selected me as the #OutLivingIt Award recipient for the ball this year I was beyond excited. This ball is their main fundraiser every year and it’s always such a beautiful occasion, full of inspiration, and a wonderful reminder of the importance of really embracing life, which is what FD, and their motto,”Out Living It,” are all about.
My job, as the award recipient was to tell my story. Following in the footsteps of Big Red, my dear friend and the previous year’s winner, I decided to tell my whole story with all its prickly thorns and vulnerable messes. It was scary but it felt right. I think in many ways we all ache for real stories, for human accounts that remind us that our suffering, our pain is the same as everyone else’s. I tried to push the boundaries of my own battles with vulnerability with this speech while also telling the truth about how exquisitely beautiful this one life can be. I hope I did the prickly thorns and the exquisite beauty some justice.
So here it is, for your viewing pleasure, whenever you have roughly 20 minutes to spare. After this speech I must have spoken with at least 100 people, each one with their own story. I heard from many other cancer survivors and fighters, from doctors, from people who had lost friends and family to cancer. It was an incredible honor. I recently heard a Jim Carey quote in which he said, “I did something that made people present their best selves to me…” and that is exactly how I felt. People were touched, they were raw, they were crying, they were honest, they were hopeful, they were grateful, they were kind, they were gracious, they were really real. I can’t totally explain what happened but it felt like magic to tell my story and get to hear so many in return… to get to see the best of so many people.
So now that I’ve conquered one big, vulnerable, scary thing I decided it’s time to move on to the next one. Life is short so you can’t wait for tomorrow to take chances, I suppose. I’ve finally decided to do what so many of you have suggested I do and I am going to write a book. I’m going to write a book and it’s going to be published in three months. I know, it sounds completely insane but it’s happening. I have a publishing company and a whole program all lined up, all the deadlines in place and I begin writing…now!
In many ways the book will be the long, written form of this speech, except instead of just my story it will also include a guide. It will be an instruction manual for those who have been beat down and broken open by a crisis, the way I was, for anyone who has ever felt like they are losing hold of what makes life meaningful or gives them purpose. I want to share all the research, all the work, all the blood, sweat and literal tears I’ve put into searching for the things that make life, not just meaningful, but downright breathtaking. My sincerest hope is that someday, someone who has been to hell and back like I have, will pick up this book and find some inspiration in its pages and they will find a way to live a fuller, richer life as a result. And since my goal is always to support my fellow young adult cancer fighters a portion of the book’s proceeds will be donated to my favorite young adult cancer groups, including First Descents.
As with everything over the last two years I know that this too shall take a village. I’ll be launching a Kickstarter in the coming months to help get this puppy published and out into the hands of as many people as possible. And I’ve already thought up some awesome Kickstarter rewards that I am super excited to share with you! I’ll also needs folks to read and review and get the word out early. There will obviously be many, many more details to come! If you want to stay on top of everything you can sign up HERE to get updates on the Kickstarter and the book’s release!
In closing, I am about to swim deep into the depths of some vulnerability I have not yet imagined and while it is terrifying it is also exhilarating. I know for certain that there is no way I could do this without a community as supportive and encouraging as you have all always been. So thank you for your love, your light and your endless high fives. Love, love, love you all!
I was wandering around Home Depot one day a few weeks after moving to Frederick when I saw a booth for a company called Solar City. I had been researching solar panels so I decided to ask for a free consultation. “We’ll send Patrick Shafer to your place. You’ll love him. He’s one of our best.” Little did I know that I would indeed love Patrick and that not only was he one of the best solar panel salesmen a gal could ask for but he was one of the best humans I would ever meet.
When Patrick arrived at my home I immediately felt comfortable in his presence. I didn’t know what to expect but I never felt like Patrick was selling me anything. The passion he had for our planet, for the environment, for solar energy just flowed through him. We quickly moved from conversations about solar power to conversations about our shared interests and passions. I talked about my job working with poor farmers in Africa and his eyes lit up. He talked about his organic farm and I’m sure my eyes lit up in equal measure. We geeked out over agriculture for a while before we got back to conversations about energy bills. As he left that day I silently schemed about how I could turn my solar power salesman into my new best friend.
I was pleasantly surprised when, a few days later, I got an email from Patrick, and not about solar panels. He wanted to hear more about my job. He’d been contemplating how to expand his work and maybe do something internationally focused. He was intrigued by my organization and wanted to pick my brain about where he might take his career. I suggested we meet up for lunch and told him I wanted to pick his brain about vegetable gardens as well and he agreed. We met a week later at the Wine Kitchen where he sometimes worked as a bartender. We talked for two hours straight about agriculture and jobs, vegetable gardens and farming. We both got super nerdy and I got awkwardly excited when he told me about his adventures in testing the nutritional content of food grown in different types of soils using different fertilizers and pesticides (I know, right?!). Patrick’s main message that day though was that he just wanted to be helping more people. He just wanted to give back in a big way and we schemed about the opportunities that might be out there for him.
But in addition to talking shop we also talked about death. Patrick had admitted to devouring my blog one night and we talked about what it was like to live knowing you might die soon, how challenging it was but also what a blessing it was. For many people this is uncomfortable territory. Talking about living deeply and facing death is not easy. But it came naturally for Patrick and made it clear that he was a man who lived his life with great intention and integrity.
Patrick sent a note to thank me after our lunch and said the following:
I wanted to thank you for meeting me the other day, it was a very enlightening experience. Being in your presence is a neat thing. It is easy to recognize a loving and honest soul just looking to do the greater good. You are a good egg! I feel as though your entrance in my life may be a catalyst for more positive change. For that I thank you. The physical and emotional struggle you face is a daunting one but I hope you continue to bravely persevere. I don’t want to be the guy that says “let me know what I can do to help?” and not follow through. I would be honored to be a part of the “Crush” team and help facilitate awareness and fundraising on your behalf.
In many ways Patrick had taken the words right out of my mouth although I’m not sure I understood at the time what a positive catalyst Patrick would end up becoming in my own life. And true to form Patrick made good on his promise to be the guy who follows through. A few weeks later when I texted him asking for a recommendation for a plumber Patrick’s response, probably knowing we couldn’t afford a plumber was: “I can fix it!” and sure enough he came over with all his tools and spent hours fixing our sink. I paid him with broccoli soup and Christmas cookies but they did not even begin to describe my incredible gratitude for this gracious gesture. A few weeks later he came to our Housewarming party where I got to meet his beautiful wife whom he’d beamed about, even in our first meeting. Sadly, even though Patrick and I would have many more communications over text and email in the following months, I would never see Patrick alive again.
Last Friday Patrick died in a single car accident near his home in Maryland leaving behind his wife and their two small boys. Like many when I first learned from Facebook I was in absolute shock. He was 35, young, healthy, vibrant. His energy and spirit filled up a room. It seemed impossible that he could be gone. The grief crept in slowly as I started to realize how important Patrick had become to me in such a short period of time. He was a kindred spirit, someone I connected with immediately and you don’t meet many of those in your life. But he was also, somewhat singularly, my safety net in Frederick. He was the guy I could call when my sink broke and I couldn’t afford to fix it. He had made Frederick feel like home. We had plans together, to build a vegetable garden in my yard, to find him that opportunity that would take his love for this planet and its people around the world. He was my friend. He was also one of the best people I have ever met and left behind a young, beautiful family. His light should not have gone out so soon.
I was unprepared for how unprepared I was. You see, as someone with what is technically a terminal illness I think about death A LOT. As a member of the tight knit young adult cancer club I confront death A LOT. I’ve lost at least 8 people under the age of 35 this year alone. But this death felt really different. It was unexpected. It was a shock. Unlike with my good friend who died last year there was no final meeting, no good-byes, no exchange of final keepsakes. He was just gone. His life went from busy, full and vibrant to completely snuffed out.
Two weeks ago I got word that my cancer has continue to spread and I spent a week thinking of nothing but my own death. For the week since Patrick’s death the questions have become very different. As someone who lives so close to death, so intimately with loss, how could grief catch me so off guard, how could I ever learn to live with this loss and why did it have such a stranglehold on me for someone I had known so briefly?
Here is what I have learned from Patrick’s death and more importantly Patrick’s life in the last week:
It is possible to live a life completely devoted to love.
It sounds cliché but Patrick’s main priority in life was love. He was utterly devoted to his family but his love stretched much farther than that. I know this because I could feel, in the very brief time that I knew him, Patrick’s selfless love for Andrew and me and saw it in his actions. I could see Patrick’s love for his wife and heard him speak of his love for his children. I listened to him speak passionately about what he wanted to give to those around him, about what he had already given through his time as a firefighter and EMT. And I saw Patrick’s devotion to his friends and family in the hundreds and hundreds of faces around me at his memorial. Whose memorial has an overflow room and still ends up being standing room only? A man who, in his short 35 years, has devoted himself completely to love, that’s who.
It is possible to live your life all in.
There was no half way for Patrick. He wasn’t going to recommend a plumber. He was gonna fix the damn sink himself. He wasn’t going to grow food to feed his family, he was going to cultivate the best soil, grow the most nutritious food. He wasn’t going to suggest some plants we could grow in our garden he was going to build the boxes himself, bring over the dirt, plant seeds alongside us. Like I told Amanda I imagine that Patrick rarely saw anything as “their problem,” “her issue,” “his burden.” To him it was always “ours.” He was in it with you and if he said he was gonna show up, he would show up, as I’m sure he did countless times on sleepless shifts at the Fire Department and in a million big and small ways in his own home and for all of his friends and family.
We must endeavor to live well examined lives.
I could tell from the way that Patrick reacted to my difficult situation that he was thoughtful about life, that he approached it with care and commitment. Today at Patrick’s memorial the eulogist read passages from Patrick’s journal, passages which illustrated the degree to which Patrick had thought about his life and the impact he was having. He contemplated his death, thought about what he would leave behind, wondered how he had made a difference in the world. How many of us spend our days more consumed with how much money we are making, where we’ll take our next vacation, how busy we are and how we can’t be bothered with another thing? Patrick contemplated his life’s meaning and committed to being the best person he could be and we all reaped the rewards.
Look for peace in the right places.
Patrick once bragged to me about how hard it was to get to his house. It’s so off the beaten path that you have to drive to the very end of a dirt road. He had woods behind his house where he would go on walks every day with his boys he had said. Between those stories and his complete and utter devotion to soil, one of my favorite qualities in any human, (“the greener the grass the less green the owner”) I knew Patrick found great peace in nature. In a world where we increasingly turn to bright lights and shiny screens for solace Patrick went looking for it in the right places.
Know that the glass is already broken.
Patrick was a devout Christian and as someone who is not I have great respect for how deeply he actually lived the faith in which he believed. As more Buddhist leaning I have to make my own sense of his death and the death of so many of my friends. In my most desperate moment I came across the following story, told by Stephen Levine in his book, “Who Dies?”
Once someone asked a well-known Thai meditation master, “In this world where…loss and grief are inherent in our very coming into existence, how can there be any happiness?” The teacher, looking compassionately at this fellow, held up a drinking glass and said, “You see this goblet? For me this glass is already broken. I enjoy it. I drink out of it. It holds my water admirably, sometimes even reflecting the sun in beautiful patterns. If I should tap it, it has a lovely ring to it. But when I put this glass on a shelf and the wind knocks it over, or my elbow brushes it off the table and it falls to the ground and shatters, I say, ‘Of course.’ When I understand that this glass is already broken, every moment with it is precious.”
Patrick knew just how precious life is. He treated everyone he met as precious. He knew how precious his wife and boys and his life with them was. In his journal he contemplated through scripture about how important it is to live each and every day of our lives, not taking any one of them for granted. While he may not have been a Buddhist I have to believe that Patrick would agree that we must acknowledge that the glass is already broken. My time I spent with Patrick feels much more precious now that he is no longer here when really it should have been precious all along. Like a glass breaking or like Patrick’s car crashing, we could all be gone in an instant. We must live as though we are all already gone. We are all already broken. We are all as precious as Patrick. We must treat each other accordingly.
Death cannot take everything.
In mourning Patrick I have come to a conclusion about death. It is really only the body that we lose to it. When I think of Patrick I get a very clear sense of his energy, his loving essence, his goodness. That energy has not diminished in the least just because he is gone. In some ways it is much more powerful now. I think of my friend Rachel who died last year at the age of 30 from colon cancer. I think of her smart whit, her sarcasm, her unwavering strength and complete inability to feel sorry for herself. I think of all the times I have called upon Rachel’s energy in the last year to get me through. She is just as much as part of my life now as she ever was. Patrick now will be as well. Patrick will continue to make me a better person for as long as I shall live, without a doubt.
Someone very politely asked me for money for food the other day and although I sincerely have very little to give as a result of all of my expensive treatments I just immediately thought “Patrick,” opened up my wallet and had a beautiful exchange with an incredibly charming man in downtown Baltimore. I have spent much of the past two and a half years since I was diagnosed with cancer focused on myself, spending all of my energy trying to make myself better. This has included long periods of shutting out the world too overwhelmed by own situation to engage. But Patrick has taught me better. Patrick has showed me and all of us that life is lived for others, life is lived for love. Patrick originally sought me out wanting to find a way to give more to the world and in the end it was he who showed me how to do just that.
We had only just met and yet I felt like we had known each other for decades. I am so proud to call you my friend. I too knew you were a “good egg” from the day we met and you could not imagine how much of a catalyst you have been for positive change in MY life. I am so thankful to have known you. I can’t wait for you to see the vegetable garden we plant this summer. I hope we do you proud. Bring us plenty of good sunshine. The world still needs all the light you’ve got to shine.
We love you.
Aaaand we’re back! First of all, thank you so much to everyone who watched Episode 1 of Cancer Convos. Coconuts and I were so overwhelmed by all of the support. We are very hopeful that these videos will prove helpful to our fellow young adults with cancer as well as their friends and family.
This week we decided to tackle fertility, a doozy of a topic for young adults with cancer and one that I’ve written about several times. Unsurprisingly, it got rather emotional at times but I feel proud that we were able to keep it raw and open and get to the heart of why this topic is so heartbreaking, but also why there is always room for hope. We know that our stories represent only a fraction of the issues that can come up around fertility though so we hope to have future episodes on the topic and maybe even bring in some guests. In the meantime we hope others will share their stories in the comments section here or on our YouTube channel.
We have also created a Facebook page where we’ll be sharing our videos but also other links and articles about issues relevant to young adult cancer issues. We would definitely welcome you to like it, comment on it and share stuff there! You can find it here: www.facebook.com/cancerconvos
Anyway, thank you for watching! We hope you enjoy! We promise the next episode will be a bit lighter and Coconuts will be a lot funnier 😉
(Link to video: https://youtu.be/yW9fcXE3VgM)
I remember a childhood friend who had cancer a few years before me told me when I was first diagnosed that over the course of my cancer journey I would meet some incredible people and when it was all over I wouldn’t be able to imagine my life without them. I didn’t know then how true this would become. Not only have I met one or two people I can’t imagine my life without but I’ve met an entire crew of incredible young adult cancer fighters and survivors who have totally rocked my world. I would do anything for these amazing people and in many ways they have become my family. They get me, I get them and we offer each other a normalcy that others our age cannot.
One thing I’ve wanted to do for a long time is some outreach to my fellow young adults. As young people it is so easy to get bogged down by the incredible fear that cancer can bring and the overwhelming nature of our medical system. Enter my friend Coconuts who I met while on my first rock climbing trip with First Descents. Her real name is Jessica but with FD everyone has nicknames and I dubbed her Coconuts the first day I met her, both for her adorably quirky personality and her obsession with consuming all of the coconut oil. Coconuts has quite literally been a lifesaver for me. She’s the one who recommended the doctor I see and the treatments I’m currently on. She’s also been there through many ups and downs. We have marathon phone calls and text sessions where we laugh, cry (or almost cry at least) and complain about cancer for hours on end.
We are both super committed to helping other young adults and after one rather productive marathon conversation we figured we might as well take our brilliant banter and put it out there into the Interwebs in hopes that they could be helpful to someone else. Enter: Cancer Convos with Crush and Coconuts, our very own YouTube channel AND one of my life’s greatest achievements in alliteration! Since Coconuts lives in Seattle and I live in DC we decided to film our convo over Skype. For our first episode we take on the ever-dreaded #scanxiety. Watch below to find out about our favorite and least favorite scans, the best and worst playlist ideas for MRIs, and why we don’t always trust what the all-knowing scans have to say! Hope you enjoy and stay tuned for more episodes!
(Link to video: https://www.youtube.com/watch?v=8VYpg1NksAw)
The first year after I was diagnosed felt like one big fight. I fought the cancer, I fought the nausea, I fought the treatments, but most of all I fought my own mind, all day, every day: the fear, the anger, the quickly diminishing sense of self-worth…I was constantly embroiled. I’ve now been dealing with my second bout of cancer for roughly one year and although the stakes feel much higher this second time around it feels, all-in-all, like a much gentler year. I am not engaged in battle. I am on a journey of healing. Like any healing journey I think mine has become deeper and richer the longer I am on it. As I venture down different paths I find worlds of wisdom I didn’t know existed. I finally feel, after a year, that I can wrap my arms around what a comprehensive, holistic healing journey looks like for me so I thought I’d share, in no particular order, what that journey consists of:
Healing My Cells
All of us have cancer cells in our bodies. Every day our cells divide about 2 trillion times so cancer cells are bound to sneak in. But generally our body recognizes these foreign invaders and goes to town shutting them down and eating them up. The cancer cells that become Cancer often have ways of hiding from the immune system.
So the work I’ve been doing has been to turn my immune system back up (quite the opposite of many of my initial treatments which suppressed my immune system). I take four treatments which are meant to increase the number of cytotoxic T cells, the immune system’s warriors. I take another treatment which kills cancer cells on contact and then also “paints them” which gives my immune system something to look out for. And finally, there is the treatment I just got in Germany.
The idea of this novel therapy is that you start with a virus. There are some viruses out there that our healthy cells are able to block (i.e. they don’t make us sick) but our cancer cells cannot. They are called “oncolytic.” They preferentially infect and kill cancer cells. The cancer cells that get infected but don’t die our body can now recognize as an invader. So I spent the week in Germany being “infected” with an oncolytic virus. Then, at the end of the week, I was given a “vaccine” of my own dendritic cells. Most people know dendrites as part of the nervous system but those just have the same Greek root as dendritic cells meaning “tree.” These immune cells have branches that snap up any foreign invaders and alerts the cytotoxic T cells what to attack. By unveiling my cancer to my own immune system and then alerting the generals to their presence it should help my body fight them off. I’ll get an additional injection of my own dendritic cells every month for the next few months and around May we’ll re-evaluate if it’s working. If it is I’ll get the injections with less frequency just like a vaccine booster.
In short, that’s what we are spending nearly $200,000 on this year with a lot of hard work, a ton of ingenuity and lots and lots and lots of incredible support. Hopefully, if this works, this should be the most expensive year of treatment ever because there are a lot of upfront costs, which is great, because we can’t afford to spend the equivalent of a new house every year to say the least! I am also hopeful that if I can get this cancer in control that I can slowly wean off some of the other treatments. Basically, only time and PET scans will tell.
Healing My Body
So none of these little cells that I discussed are swimming alone out there in isolation. They are all reliant on the incomprehensibly complex inner workings of our bodies. I can’t expect to just concentrate on the cells and ignore the environment they are swimming around in.
My healing journey with my body began with food and it mostly began being afraid of food. When I was first diagnosed last winter I nearly stopped eating out of fear of everything I put in my body. Slowly I began to develop rules and restrictions. My main goal was to limit inflammation. Your body normally uses inflammation to repair itself, like when a wound gets red and puffy, by bringing in immune cells to get their healing on but many of us suffer from chronic inflammation today which means our immune systems are constantly overworked and can lead to chronic illnesses like diabetes, heart disease, . Highly acidic and inflammatory environments are bad for our little T-cells but they are wonderful breeding grounds for cancer.
So I spent a lot of time trying to eliminate inflammation. My plan to do that was three-fold:
- Eliminate inflammatory foods: Guess what foods are most inflammatory? Sugar, trans fat, dairy, corn-fed, red and processed meat, processed grains, alcohol and artificial additives (this helpful article explains why these things can be inflammatory). So, in short, yummy stuff.
- Stay lean. Furthermore, fatty tissues, or adipose tissues, are actually inflammatory all on their own as they send distress signals to our immune system which overworks it.
- Eliminate toxins. Your body responds to toxins like pesticides, artificial and processed ingredients, inorganic fertilizers, etc. like it does bacteria and viruses. And we as humans carry around a pretty unprecedented toxic-load (mostly in our fatty tissues). Toxins overwhelm the immune system while also having a carcinogenic impact that disrupts normal cellular metabolic processes.
So initially my main focus was elimination: cut out the bad stuff, stay lean, stay away from non-organic, artificial processed foods. This worked for a little while but as anyone who has ever been on a diet can tell you, it can be exhausting. I put a tremendous amount of pressure on myself and was pretty unforgiving when I would slip up. And even though I was eliminating lots of bad stuff I wasn’t necessarily eating to nourish my body. I would get stuck in my limited selection of foods and eat the same thing every day. I constantly felt like I was failing, like if I didn’t spend hours juicing and whipping up really incredible raw, vegan, organic meals that I wasn’t stacking up. But I just didn’t have the energy or the time.
My diet had started to fall apart and it showed. While my scans showed that the cancer was progressing my blood work showed that my inflammation levels were super high for the first time in months. After that I went back to the drawing board with my nutritionist and we decided that I needed to shift my focus from being all about elimination to focusing more on nourishment- getting in all the good stuff I need to make my body run well as opposed to just being afraid of what was bad for me.
She recommended I try out her favorite health food company called Purium. Purium’s stuff is all vegan and organic, free of GMOs, pesticides, additives and artificial anything and super, duper pure, like they grow their food on farms hundreds of miles away from anything that could pollute the air, water or earth pure. So immediately I felt really confident that I wouldn’t have to worry about any of the bad stuff I was afraid of. But Purium also packs its products with all of the greatest, greenest, meanest anti-inflammatory foods on the planet (think wheatgrass, dandelion root, mushroom blends, algae, spirulina, chlorella, etc.). It’s basically the best medicine money can buy.
I started out with something they call their “10 Day Transformation” which most people use to lose weight but I was using to detox and try to quickly bring down inflammation. Unlike other cleanses I’ve tried this one kept me super full, was packed with super powered (like Olympic athlete level) protein so I could still work out and actually tasted pretty good. Since then I’ve incorporated the “Core 3” products from the transformation into my diet every day. This way, I know, that every day, no matter what, I am getting all of the anti-inflammatory nutrition my body needs. I still eat a few regular meals and just try to keep those as clean and nourishing as possible. I generally feel great, have tons of energy and am actually in even better shape than I was when I was being super, crazy strict.
Psst… I’ve liked Purium so much that I decided to join their team so if you want to try Purium’s stuff shoot me an email! I’ve got a ton of $50 gift cards I would love to share with anybody… friends, family and strangers alike, and would be happy to discuss my experience and all the other products they have available… thus far I’m totally in love!.
Healing My Mind
So this one is the real kicker. This is where they the really juicy healing has to happen. So, you may not have guessed, but living with cancer is hard, like really, really, really hard. It can get uglier than I’d care to share here. First, there is the incessant, unrelenting fear. If I really let it all go I could probably end up living in near constant fight or flight mode from the never-ending fear of death that comes with this diagnosis. Then there is the grief, the deep well of grief for all the things that I’ve lost that I could easily sit at the bottom of all day every day. Cancer has taken away motherhood, taken away pretty much all of my money, all of my future plans. And the thought of leaving my friends and family, particularly my husband behind, is heartbreaking. Then, of course, there is the general, every day anxiety about whether or not I’m “good enough” at fighting my cancer. Top that off with a pretty solid case of PTSD which cuts to the core of my feelings of self-worth and living with cancer could very well equal living in pure and utter misery.
So clearly that’s not sustainable. That’s not “living,” nor is it good for my other kinds of healing to be constantly stressed and sad and fearful. After going through some very low lows over the last few months I decided that whether or not I am ever able to totally heal my body I HAD to heal my mind. I had to confront my demons and stare down some of these emotions that were so incessantly rocking my boat. This meant facing down the thing that makes this all so hard: the idea that I might die. What I discovered after some exploration of this with my therapist and others was a movement out there called “conscious dying,” or “conscious living and dying” because they are really the same thing. The idea of “conscious dying” as I’ve come to understand it is that we find a way to heal all of the painful pieces so fully that we are able to live so deeply that we no longer have to be afraid of death. I’ve started going into this process by trying to deepen my meditation practice, by practicing a tremendous amount of self-love on a daily basis and by reading “Healing Into Life and Death” by Stephen Levine which I could not recommend more highly.
As I’ve gone through his book I’ve tried to start focusing in on the areas of deepest pain, deepest fear, deepest grief. I’m taking them one little bit at a time and starting with setting strong intentions even if my heart doesn’t always agree with them. For example, instead of carrying around the enormous grief of not being able to be a mother and feeling bitterness towards every mother I encounter it occurred to me one night that the problem was not that I couldn’t have children but that I didn’t feel worthy without having children. I started to meditate on the words, “I am worthy even if I cannot be a mother.” I know I’ve hit on something good when the tears start to roll out of nowhere and this was one of those times. I laid there as my mind railed against those words, not believing them for an instant, repeating them over and over as I cried. I started to do this daily and found as the days wore on that my grief started to roll away. It’s not gone but it’s not quite so biting. I had a similar experience when I decided to try and forgive my cancer. Now that’s one that’ll certainly take some time! But I’m tired of this constant resistance that I hold on to, especially against something in my own body. I am hoping as I keep moving through the motions of healing that I will find a way to let go of some of that resistance and wiggle into ever widening spaces of acceptance and holding.
So that’s it my friends. Heal my cells, heal my body, heal my mind. As I said in a blog I wrote almost a year ago, I don’t know if I will heal my cancer but I will heal. I feel the same way now. I’m done fighting all the time. I can’t carry on or live like that. Instead I want to go on healing, cell by cell, bite by bite, meditation by meditation.
I’d love to hear from you about the healing work you’ve done or are doing. I’m always up for more ideas and inspiration!
Sending love and hugs,