Riding the cancer rollercoaster can be exhausting. Things go from bad to worse to good to great all the time.
Sometimes it is in a day.
Sometimes it is in an hour.
Sometimes we live our life moment to moment.
Our motto of #rollwithit is really about being open and remembering everything is temporary. The bad moments will pass and the good ones come along for us to savor and embrace.
There is no balance. It doesn’t exist in our world. Moments go from complete darkness to blinding light.
Sadness to happiness. Fear to hope.
Last week I had a long meeting with Logan’s oncologist about her recent MRI and we discussed realistic goals 😩😩😩 and this week we spent and entire day with Johnny Depp. (For real!?!?! WTF!)
How does one even process the insanity, inconsistency and contradiction that happens to be our life?
It is crazy.
Log’s MRI was filled with good news but there was also some really bad news.
I left the meeting with our oncologist feeling torn and somewhat broken yet incredibly hopeful and optimistic.
In one sentence I was told her scan was mainly stable with some mild continued improvement in the right anterior pons (the area of the brain we are pretty sure has caused her sudden decline). I was on cloud nine.
And then, just as quickly I was given the bad news and my hope was ripped away.
Her organs are in distress and it is unclear how many more doses of chemotherapy she can endure. There is concern for her liver (god only knows I thought we’d be having a discussion about mine first😩🍷🍷) her bone marrow, her kidneys and her lungs.
Almost 300 doses of chemotherapy is taking a huge toll.
I could go into a ton of detail about what this means but basically what it comes down to is a balance between killing the cancer and not killing your child.
Juliette (our oncologist) encouraged me to really think about what ‘goals’ we as a family, have with this treatment.
She encouraged me to reach out further to Canuck Place for support and respite.
She discussed the uncertainty of what might lie ahead.
She reiterated the reality that a ‘cancer free’ life is not likely and that chemo is not a cure.
She reinforced what we already know- we are simply buying time.
What the time looks like and how much we have is still anyone’s guess.
She told us we’d reached a fork in the road.
There is no choice but to lower the dose of chemotherapy to protect Logan’s organs from failure. She also gave us the option of stopping treatment altogether.
She assured me in our situation there is no right answer and there was no way I could ever make a wrong choice.
I felt like someone punched me in the gut.
“But, she is doing so much better” I said.
I threw around different and obvious scenarios about what would happen if we stopped treatment.
I felt so puzzled
“So, the MRI looks better and clinically Logan is doing much better, so it is pretty safe to say the chemo is working, right?”
She nodded again.
“But if we continue giving her chemo she may go into organ failure or we may do irreversible damage and then we may end up a totally different shit creek?”
Again, the same nod.
“This is where it gets tricky. It is a delicate balance. There is no right or wrong now. This is where we talk about goals and dreams and hopes and what you, as a family, want to achieve.”
She tried to be encouraging and humorous, reminding me of how many times she had been wrong and Logan had beat the odds but it didn’t work.
I know this time is very different then any place we have ever been. She does too.
I started to cry.
“I don’t want to talk about fucking goals- especially with you.” a primal squeal escaped my mouth.
She didn’t say a word.
“I mean, I hate talking to you about goals because I know you think our hopes and goals and dreams are impossible and telling you makes me feel crazy and slightly delusional.”
I paused to look up at her. I could tell she was trying to holding back her own tears.
“You have no idea what this is like. I see you every few weeks or months and you don’t get to measure our life with pictures or blood tests or exams. Your goals are not the same as ours.”
It remained silent and she looked really sad. I could tell she knew saying nothing was best.
She has had this conversation many times before and she has experience navigating it. Knowing this infuriated me.
“You don’t know how hard this is. You get to do your job and go back to your healthy kids and your great f’ing life”
I felt bad for attacking her. I know logically this isn’t her fault but I couldn’t stop myself.
“When we lay in bed at night as a family, we don’t talk about Logan dying. We talk about when she gets better and what our next adventure will be. We talk about Logan being well enough to take a trip around the world. We laugh about running away and having so much fun together. We talk about all the places we want to see together and the cool shit we still want to. We talk about volunteering in Africa and eating gelato for breakfast in Italy and doing yoga in Bali. We talk about Jared quitting his mundane job that he has been forced to keep to pay our stupid bills and we talk about Brody blowing off school for a year and getting a real life education. What we talk about is forgetting about this bloody hospital and cancer and this whole life. We talk about checking out, and taking a freaking break and regrouping. We dream about freedom.”
At this point, I was crying so hard I had full blown hives and snot running down my cheek. I was slobbering and stuttering and shaking.
“We want Logan to get better enough so we can go travel for one solid year. That, Juliette is OUR secret, private fucking goal!!!! We want ONE month away for every year she has been sick, 12 months for 12 years, and I hate that I am forced to sit here in this windowless room and listen to you discuss trips to Canuck place when I have been telling my kids our trips are going to be to see the orangutans in Borneo.”
I paused to catch my breath.
“I don’t know if I am in total denial or if cancer has made me half ass crazy or if you just aren’t on our side or if you don’t ever really see us at all?”
My tone softened “How can you not already know our goals? It has been twelve flipping years? Life all over the map is our fucking goal!”
I let out a long sigh and a slight moan and I looked up from the ball of Kleenex I had torn apart in my hand feeling slightly ashamed of my language.
She was smiling and her words were comforting. The energy shifted.
“Well then….. I guess we don’t need to discuss any more goals today. You clearly already have them. Please, do try to consider taking a little more down time at Canuck place. This is beyond exhausting and at the very least you deserve a cooked meal.” She wrote some notes in her file. “But in the meantime, we will need to start teaching you and Logan how to change her feeding tube without nursing assistance. I assume she’s going to continue to need it for the unforeseeable future and a G tube insertion won’t be great option if she wants to swim in the ocean on her trip around the world. When it is time I will reach out to my colleagues in different countries and see what they can do to help you get the medications you will need. If we can, we will figure out this plan and work towards your goal. What is your timeline?”
I couldn’t answer because I was so shocked.
Juliette is never like this.
She is cautious beyond reason and maybe she just threw me as a life line to keep me from a complete meltdown. I don’t know, or care, because I love her for it.
Just like an alzheimer’s patient doesn’t want to hear they are confused, a cancer mom doesn’t want to hear about a life with out their child.
She said exactly what I needed to hear. She would try to work with us. That is good enough and I won’t ask for more.
We notched out a loose plan to move ahead with another round of chemo, albeit a lower dose, and continue to monitor her organs a little more closely while planning our epic around the world tour. We will aim to get Logan strong enough to leave sometime within the first six months of 2018.
We left the hospital and went straight to Staples and bought a map.
Maybe this is just a dream.
Maybe an around the world trip might never happen and maybe we are crazy for even thinking it can but we are going to plan for it anyway.
It gives us something to daydream about, something to hope for and something to strive to work towards and something to talk about. The ultimate 90 day plan.
It is our own personal, perfect and insane goal.
I honestly don’t think it will be that hard to achieve. I mean wejust have a few hiccups to work through….
No biggie, right?😉👊🏻
In the meantime, we will continue to live in this moment. We know its not all about the big stuff. The everday stuff is what really matters and we aren’t going to let it pass us by. Living the best life we possibly can means finding fun and possibility and opportunity and comfort in the mundane.
None of us will ever be able to know in advance what life may bring.
One day you could find yourself planning end of life bullshit and the next day you have to pinch yourself because some A list celebrity is sitting next to you wearing a hat with your website and motto on it telling you dreams can be become possibilities and to just look at him and continue to believe and not give up hope. Ummmm- ok 😉
I feel so mixed up.
The past 7 days have been a whirlwind of extreme emotion and everything feels surreal.
Super highs and super lows.
I reached out to my good friend and tribe member Heather for comfort and advice. She is a cancer survivor, a brilliant mind and one of the kindest hearts I’ve ever met.
It took her a few days to respond to my news about Log’s MRI but when she did her words were perfect.
“When I was a little girl, I remember learning about the Buddhist practice of perfecting sand art- only to brush it all away when finished. I remember being baffled by the triviality of this act and scoffing at the perceived waste of time. As I’ve grown older my thoughts often return to this practice and I feel I understand it more and more.
We spend the time gifted to us constructing these beautiful intricate lives and it feels like such a cruelty when the artistry is swept clean. We want to hold on to what we have created, to keep it close to us because is so lovely and we’ve worked so hard on the construction. And yet it is the action of creating that matters in the end- not what remains.”
And so we will… simply, continue to create.
As it is today and for what we want tomorrow
We will plan.
We will dream.
We will hope.
We will allow the artistry to be swept clean when it needs to be and then we will start fresh once again.
We will continue to #rollwithit
Because, after all, it is the only thing any of us can ever really do.
P.s. Yes, Johnny Depp is super rad and Logan has decided he’s basically her boyfriend now. 😘❤️