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,