"What's next?" I really don't know...
"You're so strong." I've never felt so weak.
I feel like my life is in an abysmal state of disarray.
Jon's mother is here (thank God!) and she took him to radiation early this morning. I slept in, loaded down on anxiety meds and in a state of funky dreams (buying pillows and mascara at Target). I woke up to Jon standing by our bed, doubled over in pain. He had just got back from radiation and feels terrible. It was like waking up on a train track just seconds before the front end smashes into your face. Watching your partner suffer and in pain is just the worse pain I have ever felt. The next hour became a flurry of trying to control the pain and get on the phone with the doctor. Due to the whole brain radiation, he is off his chemo pill otherwise known as Zykadia (for the more lung cancer savvy who read this blog). That sucks because the meds that were controlling the cancer neck down have been eliminated, giving room for the cancer there to flare up and do what it so desires. There's a lymph node that we have been watching for a few months. I think it is flaring up and causing him severe stomach pain that wraps around to his back. The pain meds he has now control it for maybe an hour or so... then it rages once again. I'm sitting here writing - what I feel like is fiction as it is so hard to truly believe this is our life - while waiting for the doctor to call back with orders. Stronger pain meds? Radiation to that node? Or what?
Writing calms my nerves.
I've also updated many of you on the Nashville clinical trial that we are eying. Folks, this is still a good option, but I wanted him to get into it as soon as possible. Well, I was reading through the criteria last night and it looks like we have to wait at least 4 weeks before we start it because of radiation. Fuck. (I really hope this language doesn't offend anyone. I know my Aunt Joyce would kill me for writing, saying, or ever thinking it. Aunt Joyce -- it's the strongest word I can find to describe some things and sometimes it makes me feel better to say it. I love you and I'm sorry).
Clinical trials can be a pain. We've never really dealt with them. The last med Jon was on (Zykadia) came to Emory as a clinical trial just as we were starting it - but it was FDA approved one week into his run with it. So, we really don't know what we are dealing with when it comes to trials. There are so many rules and regulations. If you don't fit into one box, you're out. I think the drug would be really helpful and could control this nasty cancer for maybe a long time - both in the chest and brain - and it could "buy us time" (Oh my God, I hate that phrase!) until the next breakthrough comes around the corner (Please, come on!). I have chatted with other lung cancer patients and caregivers (my heroes) who are all doing extremely well on the drug. It's just a matter of getting our hands on it and jumping through all the hurdles.
All this my friends is where the word "battle" comes into play. What we are experiencing now, especially, makes this feel like we are literally on a battlefield. Cancer molecules are being hurled at us and we have lasers (radiation) and grenades (pills) to throw at them. I'm in attack mode and I'm fighting for the most important human creature in my life that will ever be in my life. I don't want to ever run out of ammo.
The doctor still hasn't called back. So many people have asked what they can do to help us. Honestly, I knew we needed financial help to get us through this devastating moment in our lives. I did what I dreaded to do and opened up an online fundraiser. Most of the dread came from denial. I didn't want to be "those" cancer people because that means it is really seriously and ours isn't that serious because Jon is going to be with me forever and ever, amen. Well. He was doing and feeling really well! CT looked stable... but progression popped up in the brain in a mighty way. We knew the drug he was on wasn't going to last for a really long period of time and we are honestly very lucky to have gotten a year out of it. I felt I had no other choice but to open the fundraiser and the results have been absolutely astonishing.
How can I ever thank you? All of you who have so selflessly donated and honestly blown my mind with your generosity. I am speechless. A billion thank yous to the moon and back and then repeat. In approximately 2-3 days, we have met the halfway mark. Friends, neighbors, family, and strangers have given so very much money and I am so thankful! I speak for Jon as well, who is in such a scary place right now. I can't imagine how he is feeling - emotionally and physically. But he thanks you from the bottom of his heart. He knows that so many people have united in the fight for his life and his quality of life. We know we are loved, appreciated, and supported. We are amazed and we are grateful. So I've answered your question of what you can do for us... tell me, how can I ever repay you or tell you how thankful I am for giving one of the greatest gifts and meeting our dire needs? How can I ever express just how thankful I am?
Money can't buy you happiness. The Lord made sure I got that message at a very, very young age as I have never had money and always found a way to be happy without it. And growing up with a Mama as stubborn as mine, it was pretty darn hard to ask for help in the way I had to. I was feeling kinda crappy. But then Jon's mother mentioned needing to leave at the end of this week. Okay, most people hate their mother in laws and complain about this and that. Petty. Well, I need mine. She is an angel. But I also know she needs to get back and take care of Jon's father. After my heart sunk down to my bowel at the thought of her leaving, I remembered the generosity of so many others and how much money we've raised in such a short period of time. Then I didn't feel so bad. No, money can't buy you happiness, but when you are living with cancer it can buy you treatments, doctor consultations out of state with the best of the best, and travel expenses to get the best care available. The fundraiser has given me a sense of empowerment. Especially once she leaves. Because you are all helping us, I know I will have gas money to jump in the car and drive to Atlanta or across the country or to fly halfway around the world and back to get my Jon the best care that he deserves. I don't have to worry about where our next meal is coming from or how I'm going to pay for rent next month. So, again thank you. Thank you for helping us.
And since the doctor still hasn't called, I will write one more paragraph (or two). This blog has given me a channel to be very honest and open about my life as a caregiver. From the very beginning, Jon and I have felt it important to be open and honest about our cancer journey. Why hide it? It is what it is and it may make some people very uncomfortable, but this life and the things that happen to us during it make us who we are. No, it's not what I would have written for myself, but I have learned, and continue to learn each and every day, that I am not in charge. The beauty of our life unfolds around us through the deep pain and struggles we face as human beings and those challenges make us more human. Raw and stripped bare. I've never been good at putting on airs. In my first acting class in college, my dear old soul acting professor Karla Knudson looked into my eyes and said, "You are an honest human being." I was taken aback - at that age I really didn't know who or what I was. She summed me up with a glance. Jon is even more so. I think that's what makes him such a beautiful, strong storyteller. It was tempting to hide or cover up lung cancer when it all began. I thought people might judge him for having that particular type of cancer because of the stigma surrounding it. He has never smoked a day in his life. His lungs should be as healthy as most 20somethings or even more so. But we decided not to hide it and we have been open and honest. And the number one reason, which we have discussed often, for being so open about our struggle is the hope that it will help others who are facing such a challenge in their life. All we've ever wanted to do in our lives is be storytellers. I never thought the story we'd be telling would be our own - so literally - but here we are.
Historically, poets and storytellers have taken the logic of science, or the what, and attempted to uncover the meaning of life, or the why. In ancient Greece, poets literally lead humans to the "watering hole" or Delphic Oracle north of Athens where mortals and gods could drink together in honor of Gaia - the earth goddess - and then Apollo, who was considered the god of poetry among other things. I by no means consider myself a "strong" human being, but if being a storyteller means I can serve a purpose, then I will accept. If I can inspire others to live a fuller, more meaningful life, then I am happy. If our struggles can influence you to hold onto your loved ones tighter, to be more present in the moment, and to complain less, then my heart is full. If our battle with cancer helps just one person - even if it just lets them know that they are not alone - then a big part of my work here on earth is done. And, for that, I am thankful.
Our Medical Fund for Clinical Trial: http://www.gofundme.com/tkr6sc
"Don't Worry, Be Happy" - Bobby McFerrin but also my Papa
Bush - Glycerine. I think this is a really beautiful video.