Life according to plan?

Many of us spend our lives living a life ‘according to’.
‘According to’ means having a plan.

We as human beings seem to live to make plans. We need them. We strive to fill our calendars with them and even when we are not making any plans we are feel like we should be.

I am as guilty of it as the rest of you. No one likes to be stagnant.

Plans however, are often mistaken as goals and as such are often part of what motivates us. Plans to finish college, plans to find the perfect life partner, plans to land the best job, to buy a house, to have kids.

We plan for our future, our retirement, and even our death.

Our lives revolve around our plans and thus we spend a good portion of it in competition with ourselves and with others.
A life ‘according to’ dictates how we behave. It guides us down the natural path of what’s expected but it also means that we are always in pursuit.
-Of the next big thing
-The next piece of the puzzle
-Of what we think will make us happy, successful, and complete.

The thing is, many of us never get there.

We never ‘arrive’ because plans always fall though, expectations always change, and somehow we always end up feeling like accepting where we are at (if it is not where we want to be) is a bit of a failure.

So what do we do?

We change our focus, readjust our outlook and set our sights on a new plan.

Most of us, including myself, measure our own life ‘according to’ plan by tangible, reachable goals but in doing so, sometimes, I think, we simply miss the point.

Plans don’t always give us purpose and direction.

Sometimes all they do is just complicate things.

Today, we got a plan to deal with Logan’s tumour progression.

I have felt very anxious for past month since we found out her tumour was growing and have desperately wanted a solid plan of action to deal with this problem.

I thought having a strategy was going to make us all feel stronger, more in control, and more empowered.

What I didn’t expect was receiving a plan and feeling more at a loss than ever.

Yesterday, I learned execution doesn’t always make you feel better.
Sometimes having a plan just makes you feel really, really, really afraid.

None the less, here is ours.

Logan will start chemotherapy for the 4th time.

It will likely begin next week.

She will have surgery to put her port in as soon as possible. They are thinking Monday. She has been taking aspirin to lower her risk of a vascular stroke and she needs to be off the blood thinning medication for a week before they will risk putting her under the knife.

Chemo will likely start the next day.

To begin, we will take 5 days of an oral chemotherapy called Temodar.
The side effects are mainly the same as IV chemo except she shouldn’t lose all her hair and she will be able to take this medication in the comfort of her own home.
Her counts will drop, she will feel sick, and because she’s had so much chemo in the past she will likely need platelets and/or blood to help her bone marrow recover- hence the port.

There is a possibility of adding up to 3 additional chemotherapies to this oral regimen if we need them. Our oncologist said she open to doing so if Logan’s symptoms continue to progress during the first cycle of Temodar.

I have spent the last twenty four hours researching and reading studies and success rates on both options, temodar alone or temodar in combination with CCNU lomustine and vincristine.

There are two schools of thought. Ease her into this slowly and see how much toxicity she can handle or just go gangbusters and try to attack this thing with a more intense treatment. None of us know the right answer, I am not sure there is one.

Both are risky.

Of course the overall hope is the oral chemo will be strong enough to stabilize her tumour but soft enough it won’t totally damage her bone marrow any further. Which means she could take it longer. We just don’t know if it will work. The results are not outstanding but it is also a fairly new drug as far as chemotherapies go and information is fairly limited for Log’s type of tumour.

Truthfully, our options are all very limited and it will be a delicate balance between treating her cancer and maintaining a good quality of life.

We have been told that this oral chemo (or the combination of both) will likely not get rid of her tumour. The goal will be to stop it from growing any further and the absolute hope will be to see a little bit of shrinkage but probably nothing more.

Don’t get me wrong, this does not mean we are giving up- but it does mean we are being realists. It’s been 11 years, and we know where we are at. Each time this news is getting harder and harder to swallow. (Pardon the brain tumour pun)

Time is now our priority but a cure is still our hope.

If we can stabilize things with the oral chemo then we have more time to get her symptoms under control and hopefully she can feel better and enjoy more experiences with people she loves. Maybe we can book another trip, have some fun together and forget about all of this for a while longer. This is the goal.

Where things stand right now, we are basically swimming against the current.

Her symptoms are getting worse, likely because her tumour is progressing slightly as the weeks tick by.
We are all in agreement that it is time to treat the tumour because despite our efforts over the past two months nothing is working and she is steadily declining.

We are now in a time crunch.

Our oncologist broke down and cried. She told us how sorry she was that we were ‘here’ again and she sobbed feeling responsible for not curing her. She reassured us that she was staying strong in her quest to help Logan get better. My heart broke for her along side of my own.
Its been a long road. She’s an amazingly smart, diligent and optimistic doctor yet she’s an incredibly tough nut to crack. Her communication and bedside manner has not always married up to what we needed in the moment but today when we saw her raw emotion we felt how deeply she cares about Logan and our whole family.
It was also in this moment I also realized with absolute truth that having her on our side is Logan’s best chance at survival.

No more fighting her.

No need for a new oncologist, we are and always have been, in this together.

We also met with her surgeon Dr. Steinbok.
He wholeheartedly agrees with the plan to try chemo first.
He thinks the risk of surgery far outweighs the benefit at this point.
His perspective is the damage and tumour are intertwined and are progressing systematically by blanketing normal and healthy brain tissue.
Her tumour is not growing like it did before, there is not a bulk or solid lump for him to deflate or take out and his attempt to help may cause her more harm than good.

He did suggest that because he’s turning 70 and is winding down in his career, we meet the neurosurgical team at VGH. Apparently he’s referred us to the ‘go to’ brain tumour guy over there.

Dr. Toyota will be our contact ‘just in case.’

We don’t know for sure but there may be a place for surgery down the line. Maybe a biopsy for further molecular studies, maybe a new technique will be discovered and if so we can be reassured we have one of the top brain surgeons in Vancouver at our finger tips.
Dr. Steinbok comforted us by telling us he’s not passing us off and assured us he will follow up on Logan’s case. He also pacified us by saying if it ever did come down to surgery and we wanted him to be in the OR, as long as he still had a license he’d happily assist.

Our endocrinologist stopped Logan’s growth hormone injection for obvious reasons, and the cardiology team hooked her up to two separate monitors so they can get a better picture of what’s going on inside her twenty four hours a day. We reviewed some test results, and were told Logan’s frozen tissue samples from previous surgeries had been sent back to pathology to double check for genetic mutations and certain changes.

And that was it.

We left with a new plan.

It’s not a plan we like. It is not where we want to be and it is definitely not fitting into our ‘life according to’ but it’s where we are at and in the words of Logan herself “We are going to have to figure out a way to roll with it.”

And that is just what we will do.

Again, for the fourth time.

We will add more chemo beads to her already long necklace and we will readjust, refocus and remain hopeful that this is just one more of the many detours rerouting us in this life that is all over the f’ing map.

Here we go again……

Storm watch

Apparently, there is a storm coming in tonight and we’ve been advised to get ready.

I, however, feel like the storm already hit us months ago. It is relentless and just won’t let up.

We’ve tried to be prepared- we’ve lived through this before- but even amidst the worst of storms we’ve learned no one can ever predict what the force of nature will be.

What started out as minor symptoms we hoped to get under control quickly, have proved to be much more daunting and complex than we first thought.

I forgot. This is how the storm known as cancer usually hits.

Fast, hard, unpredictable and without notice. This time it also hit us from behind.

We weren’t expecting it.

Logan’s blood pressure is not getting better and she has not responded to the now 14 NEW pills a day she takes.

We thought maybe we could help fix things by addressing her heart, flooding her kidneys with fluid, and overdosing her on sodium.

It didn’t work.

Obviously, her heart is not the problem.

It is, once again, her brain.

She is now experiencing vascular dysfunction.

Basically, the vessels aren’t carrying enough blood to her brain and therefore her vessels and arteries aren’t maintaining enough pressure.

The reason?

A combination of problems.

Yes, number one- the one we fear the most.

There is tumour progression and the main tumour in her brainstem is slightly enlarged.

Go ahead- say it, we have said it a million times already.

“Shit!”

Ultimately, what that means is we only bought time since the last round of chemo and radiation and her tumour was only ever ‘stable’ and not completely destroyed as we hoped it was.

For some reason the word stable never sat right with me. I dared not to say the words out loud but I always had this gut feeling this day would come again.

Yes, we are devastated, completely fucking shocked, and even though this is the fourth time we’ve heard the words ‘tumour growth’ and we shouldn’t be, we are unexpectedly and deeply angry.

However, now the tumour is not Log’s only problem. She has had so much damage since radiation that the new growth of the tumour really just complicates an already nasty situation.

It also means the blame and anguish is spread around. Her cancer is not any less devastating, it is just that we don’t know which problem is worse or what to hope for.

“Why?”
“Why?”
“Why?”
“Why is this fucking happening again???”

My mind won’t shut off. Sleep is becoming elusive. The pit in the bottom my stomach feels twisted and painfully unbearable. All. The. Time.

It is so hard to comprehend this new news because I feel like we’ve done everything right.

I feel like we have learned so many lessons, adjusted so many expectations, listened so carefully and done everything the doctors have told us to do. We’ve learned to accept so many unacceptable circumstances and move the goal post and for some reason I thought that would be enough. That maybe we’d get lucky, get a pass, that god or the universe or who ever would side with us and that the cancer wouldn’t come back.

That is what karma is isn’t it?

Be good, do good and good will come back to you?

Hasn’t Log been good enough? through enough? Hasn’t she tried hard enough? Taught us all enough? And shown enough courage? Haven’t each of us?

Plus, eleven is supposed to be our number. It’s just not fair….why would she relapse at eleven years?

Fuck, none of this is fair and even though logically I know none of the above questions matter or even make any sense, I am still asking them over and over again because deep down I still feel like I need an answer.

Our oncologist is being optimistic.

She has pacified us with her knowledge and expertise. She has told us she is not 100% certain the new growth tumour is big enough to be responsible for all of this.
We hope she is right because Logan’s decline has been so sudden. To think it could be tumour all on its own is very scary.

She thinks something else must also be contributing. Something we are missing and she’s looking. We are doing all the tests she asks us to do.

But what could it be? We have no idea.

We are just clinging to this theory as a little bit of hope at this point.

Apparently, in addition to the main tumour there is a small spot in another very sensitive area (right obex ) and signal abnormality extending into the pons.

We are trying not worry but couldn’t help and ask what exactly the new signal abnormality could be?

Could it all be tumour?

Yes, we were told it could but it could also be brain damage from treatment. We won’t know without a biopsy but there is possible further radiation atrophy.

Neither sounds good.

One just sounds more treatable than the other.

We don’t know for sure and won’t until we see how things progress but we’ve been told it’s likely combination of both damage and tumour and it’s a bloody mess.

Now, we don’t know what to wish for….

And we really don’t understand what this all means?

Logan feels terrible and it seems like we are once again paddling up shit creek.

Juliette (our oncologist) called tonight and briefed us on the current plan of action. We angrily walked out on her last week and hadn’t spoken since then.
It’s not her fault, and we know we need her help.
We know we need to let go of all this anger and our emotions are just bubbling from a place of fear but we are scared and hearing all of this seems like too much to process.

I apologized to her tonight for my anger and she apologized for not listening to us the way we needed her to and then we let it go and talked about a plan.

First off, she said we need to get Logan’s vomiting, blood pressure and symptoms stabilized and we need to do so as quickly as possible.

Second, we need a plan to address the growing cancer and if possible the damaged parts in the brain causing all this trouble.

She referred us to a cardiologist and on the weekend we started yet another new medication. It is used for vascular dysfunction as a ‘rescue’ to tighten the muscles around Logan’s veins and keep her blood pressure up.

We are also giving her three to four litres of fluids a day to help increase the pressure. She’s taking sodium tablets, additional blood pressure meds, wearing compression stockings and we are trying to get her out for a couple hours each day for a bit of exercise.

An angiogram of the brain has been ordered to rule out the possibility of a stroke.
Logan’s face has recently started drooping and at times she has been unbalanced when she is walking.
The fear is she could be having ischemic attacks (precursors to a stroke)
Our oncologist thought it would be a good idea to start giving her a preventative dose of aspirin until we know for sure.

Next, she WILL be presented at the adult tumour board at the BC Cancer Agency this Friday.
After a gentle nudge, Dr. Hukin agrees it would be a good idea to get a second opinion on treatment options. The idea of fresh set of eyes gives us some comfort.

She will also request to see if Logan’s previously frozen pathology samples could be looked at on a molecular level. Her tumour may have changed since radiation but it will be a start to find out if Logan could be eligible for any of the new genetic research that is rapidly unfolding including that in which Dr.Sorenson/ Dr. Rod (the Dr. from the video below) have been working on.

We have a referral with a new neurosurgeon at VGH and although this initially worried us, we now understand it. Loggie is getting too old for all her of procedures to continue to happen at Children’s Hospital. Apparently, her surgeon Dr. Steinbok, is also getting too old.
He is operating less as retirement approaches and thus decided it might be a good idea to add a new member to our team.

We will meet with this new surgeon in the next couple weeks to get his thoughts, and then discuss the plan with Dr. Steinbok to see what he thinks. It’s not a big rush, as we’ve been reminded surgery is not currently a viable option that is ‘on the table’ right now.

Nothing, realistically, is a viable treatment option until we get her stabilized and feeling better and stronger.

She isn’t strong enough for much these days and is getting weaker as the days go by. She has lost about 15lbs. She is taking between 3 and 5 doses of anti-nausea meds a day. She’s not eating much. She’s slurring some words, having more trouble swallowing, more intense headaches and is just so darn tired that every day small tasks are taking an obscene amount of effort.

We spend a lot of time in our jammies.

It really sucks. We’d rather be on a beach, or at least planning a trip to a beach.

We are angry and we are trying not to be angry all at the same time.
We know this is no ones fault and at the same time having no one to blame is one of the hardest parts.

We have been so lucky, and we know it.

We had so much progression free time- travelled the world, celebrated milestones, but somehow….

it just doesn’t feel like enough.

Logan is doing her best to plug along and stay strong but mostly she is just sad and frustrated with her lack of freedom. She hates being held back and is discouraged with her attempts to go out for a couple hours per day. These excursions make her so exhausted she usually needs an afternoon nap just to recover.

She’s tired of Netflix, of colouring in her swear word colouring book, spending all day with her mom and she is so damn tired of sending snap chats to her friends while laying in her bed.

She desperately wants to feel ‘normal’ again.

I am thankful to her friends Dani and Taylor for getting her out today and for coming last week as well.

You guys are exactly what she needs- friends, love, and a solid medical plan.

We know it, and we are working on it.

A plan to feel better is our only focus.

All other plans are on hold. There are currently no big trips planned- no amazing adventures on the horizon. No getting up early or staying out late. The calendar is not full of highlighted commitments and we aren’t saying yes to many activities.

For us, right now, it is about hunkering down. It is about the mundane, every day, repetitive, same ole’ routine of trying to get these cancer symptoms under control.

That is it. Nothing more. Our circle is small and we aren’t feeling very social. I apologize if you want to help and we don’t respond. Quite frankly, we don’t know what to do either. We just need some time, and when we finally regroup we know you will be there for us. You always have been, we love you and it is not lost on us.

But, for now, we just need down time to regroup because even with our reduced schedule, lack of activities and our 11 years of practice this ‘life all over the map‘ just doesn’t seem very easy to manage these days.

Basically, we are just barely holding it together, grasping, and trying to keep the blood pressure up, the puke down and the hope alive that this storm will pass very soon.
❤️

WTF ‘What the FORTY!!!!’

I imagine as people get older almost everyone wishes they could turn back time.
Tonight, on the eve of turning 40 as I sit here with my glass of wine and the latest iPhone scribbling down my thoughts, I can’t help but wonder about every single decision I’ve ever made and how I’ve ended up here.

In this moment, with all these damn thoughts.

I’d be lying if I said turning 40 was easy.

The truth is I am not ready.

Not in a shallow, ‘I need more botox or a better bikini body’ kind of way, but more in a ‘I want a do over’ way.

I do want a ‘do over’.

It seems like yesterday (but it was 20 years ago) I was the age of my oldest child.
I thought I knew everything.

I thought I was ready and I thought I could handle being an adult.

The truth is, I didn’t really know what being an adult even was.

Yes, I was ready.
Ready to take on the world. Ready to parent a child on my own (for a while), Ready to move to the big city, work my way up the career ladder and the food chain.

I was ready to balance budgets and cheque books, ready to get married, buy a home, and start a family.

I could handle PTA meetings, early morning conference calls, and late night parties.

I finally didn’t have to ask anyone for permission and I felt proud about affording the genuine leather shoes.

My twenties were great.

Despite starting out as a teenage mother I knew I wasn’t going to let myself become the typical small town stereotype. Not that I truly buy into any of that crap but I did work hard, I achieved what I set out to do and I felt confident my thirties were going to be amazing and over the top.

Then at 29- my kid got cancer.

But, that was just an obstacle. I had no intention of letting it stop me or hurt my family in any way.
I was totally in control. Like an adult, right?

Cancer was just another challenge and I was up for any challenge.

My kid would be the one who beat cancer.

It would only make all of us stronger. I would continue to work and we would continue to build our future. Cancer would simply be the vessel that taught us valuable life lessons and in the end we’d be better and stronger because of it.

We’d give back.
These important life lessons wouldn’t ever be lost on us.
We’d speak out for high profile organizations and raise awareness. We’d pay our dues- and pay it forward and would be grateful for our good fortune as survivors.

And then, when it was all said and done and we put cancer behind us and we’d move on.

More evolved, happier, more focused and more connected with ourselves and each other.

The problem is my thirties didn’t really go that way.
Instead, they slowly spiralled in the complete opposite direction.

We didn’t beat cancer during this decade. We fought it. Tooth and nail.

We spent nearly seven and a half years in treatment at BC Children’s Hospital and we struggled. Log got sicker and then she got better. The side effects of treatment were unexpected and they took their toll on all of us.

My heart shattered into a million pieces for my daughter.
I lost my job. We remortgaged our house (instead of paying it off as planned) and somewhere in it all I gave up thinking of the way things ‘should’ have been and forgot about moving on and instead just tried to inch forward.

Yes, my thirties have been some of the best and worst days of my life

On one hand I am so proud of what I have accomplished. I am proud of who I have become and the people around me.

I have realized that time is more important than money, yet it makes me happy to know I can balance both. I am grateful my husband and I have had the same goals. Together we have been able to grow (two steps forward, one step back) as a couple and as individuals, take crazy risks, have fun, laugh and not kill each other in the process.

I am happy to have traveled the world with my kids. It truly has been my life’s greatest gift. Had life been ‘status quo’ I know we would have never ventured out, spent our retirement fund, or had these experiences and I wouldn’t give back one second we’ve shared together in any third world country for all the money I could have had.

I am grateful for the strength I have seen in so many around me over the years and I am also grateful for the strength I have found within myself.

My thirties have been a filter.

I am pretty sure I have far less people who like me, it’s been excruciatingly hard to come to terms with all that has changed over this decade, but I just can’t dwell on it or torment myself over any of it anymore.
The people I do have (a hodgepodge of sorts) are genuine and dependable and each teach me something different and valuable about life and about myself. I am grateful for that.

Today, I don’t take friendships for granted and I’ve learned to say I love you with out feeling weird.
I have learned who I can count on and who I can’t. I have learned how to ask for help. (Ok- 😜 at least I have started- kind of)

I have a sense self worth and confidence I didn’t have in my twenties.
I also have a higher tolerance to alcohol and I drink better wine, so my thirties weren’t all bad.

They brought forth authenticity.

It was a decade that connected me and tore me apart all at the same time.

It was a time that helped me finally work up the courage to face some brutally raw emotions buried deep down inside for far too long.

My thirties have been extreme in contradiction.

My inside voice is almost always on repeat.

“You’ve got this Jenny!!!!”

And then in the next breath I hear myself whispering…

“You’re totally fucked!!!”

And so it goes.

The days have been long and the years have been short.

My ‘baby’ is now the age I was when I had her. My second baby will be a teenager soon. I’ve been with my partner for almost half of my entire adult life and I now feel like when I when talk about home it isn’t any longer the town I grew up in.

I have changed.

And although I may not be ready for forty,
here it is.

I assume it is ready for me.

In some ways, I feel like I’ve lived so much longer than a mere four decades and yet I still long to hit the reset button. I have so much more to learn.

I want to re-evaluate this ‘adult thing’ and actually listen to the people who tried to give me solid concrete details on what it all entails.
I want to go back and make an informed decision about whether or not I could actually do this or not.

But wait- No one does that right?

No one has any idea about all of this grown up stuff, do they?

I think most of us just pretend or at least I hope so because it is the last day of my 30’s and I still don’t have a fucking clue.

I haven’t beaten cancer, I haven’t saved my child’s life, or moved on (or even forward sometimes). I don’t have a job and I am no
longer even sure of what I want to do when I ‘grow up’.
I feel like it has all gone too fast.

Life has been too harsh on one hand and then far too gracious to me on another.

I fear yet anticipate what is about to come my way and even though I am second guessing my ability, forty now feels like I am ‘all in’.

All in- with no road map and a life that is all over the map.
I have no plan, and no idea where I am headed. Just a shit load of hope that won’t burn out, a super rad cheering section that keeps on chanting, a half stocked wine cellar, a kick ass shrink (who just raised her rates), and a pre-approved line of credit.

I mean, how bad can it really be?

Forced to take my own advice.

I wrote a letter to myself in India.

It was part of an activity that we did in the a fresh chapter portion of our trip. It was an opportunity to ‘get real’, say a few words of encouragement, and give myself some perspective in my everyday life when I got home.

My instructions were to seal the letter and the facilitators of the program would mail it to me at some point- months after I arrived home from the trip.
I was assured this letter would likely arrive when I needed to read these words the very most.

Of course, it came the day we got home from the hospital.

“Hey you,
I bet this letter is going to arrive just when you need it most. It is just a reminder of India, of all the connections you made that led you here and of all the shit you’ve already sorted though in your life. It is a reminder of how you are exactly where you are supposed to be today and every single day. Remember that.
Acceptance is tough.
But Jen you need to LET IT GO. You are so much happier and a better version of yourself when you accept things for what they are.
Don’t overlook the good in your life and focus on the bad- it only fucks you up and distracts you from being in the ‘flow’ and attracting what you want in your life.

You are fun and smart and worthy of happiness despite all the shit. Jen, you got this! It is your life too and it matters.

Be grateful, say I love you to those who matter most and try to stay in the moment because if you miss it you will never be able to get it back.

I love you. Take care,
Yourself.”

Today, I am trying to take my own advice by not focusing on the bad but rather looking at the good.

We are discharged and are now at home.

Logan’s blood pressure is slowly coming up and and she is starting to feel better.

We are pretty sure the medication is working.

All the tests we had done (and it feels like we’ve had a zillion) showed there were no new underlying conditions to worry about.

Her heart is good, her blood work is stable, she isn’t going into adrenal failure and her organs look to be holding their own. All good news.

And there is good news on her MRI too.

The area we are most concerned about, the medulla, where the biggest portion of her tumour is looks stable.

There is no enlargement, no giant cystic cavity filled with fluid cutting off the flow to her brain. Yes, this is all good and we are happy and relieved about this news.

But, despite this good news, there is also some not so great news about her MRI.

It is now confirmed that there is some slow progression of signal abnormality moving into a different part of her brain called the ‘pons’.

But before you all gasp with anxiety, I want to reiterate the key word being slow progression.

The report written this week looked at MRI’s dating all the way back from 2012 (when things looked best)- until now.

It’s one thing that hasn’t been consistently happening, reviewing and comparing her previous scans and in such detail.

There are many reasons for this.

Stable in a brain tumour patient means a number of things and not just a picture we take every few months.

It means looking at and analyzing how she is physically and asking the question “Is her body copping with this tumour? Is she feeling well?”

This is most important. Small changes on the picture are less poignant if overall she is doing well.

To be honest, one of the problems we also have when we look at Logan’s scans are they are really hard to read. There is scar tissue, surgery damage, residual tumour, post radiation changes. It is basically like a dog’s breakfast so subtle differences aren’t always noted as being a that big of a panic because we aren’t even always sure what we are looking at.

Alot of our decisions on how we proceed with Logan’s treatment plan and medications are based solely on how she is doing physically and most of the time that is the best plan for her.

But, unfortunately over time things can compound and when we look back at her scans from the last couple of years and we compare all those ‘small changes’ over time, we see an accumulation which is an more obvious one in some areas.

Here is the deal.

It is the best way I can describe it from the MRI report I have in front of me (taking out all the big medical words) and from 11 years of experience.

After radiation and her last round of chemo she had some inflammation for a couple of years and the damage and atrophy occurred, then it seemed to level out and things looked a bit better.

In 2013 there was some activity in a lesion at the right obex, the area of the brain where the fourth ventricle narrows to become the centre canal of the spinal cord. This growth has slowed in the last year, but now, it has slowly extended upward and we are seeing patchy abnormalities in the bottom half of her pons.

This ‘new but not so new’ progression in the pons has been most pronounced in the last 18-20 months since Dec 2014 when compared to her scan in June and most recently this week.

“It is hard to say at this point if Logan’s new symptoms or all her symptoms in the past while are related to this slow progression because she has so much damage and residual disease in all of the brainstem but the short answer is that is pretty safe to say yes. ” (The words of our doctors)

So, now, what does that mean?

Well, basically, we have no fucking idea.

We don’t know what this new signal abnormality will mean in the future or how and if it will continue to progress but yes it is scary and worrisome. No one is more stressed about it than us.

But there is nothing we can do about it.

And here is where all the questions come flooding in that you and I and everyone will all want to ask.

Here is also where all the frustrating answers surface because truly there are no real answers.

No, surgery is not an option in this area or even necessary at this time.

No, she cannot have any more radiation to shrink or stop this.

And No, chemotherapy is not on the table at this point. It is not that dire and it would do more harm than good. It won’t get rid of this.

This is why living with cancer is not black and white and so hard for many to understand. Sometimes, you have to wait even when you don’t want to because you aren’t sure what the cancer is going to do. Sometimes slow growth is better than any treatment and sometimes managing symptoms is all you’ve got.

Living with cancer means having to accept where you are at.

It means knowing at times there will be no answers, accepting there is no magic pill or crazy homeopathic, naturopathic remedy that will make it all simply go away that life will never go back to ‘normal’.
It also means accepting (as fucking excruciating as it is) that what it really comes down to is having the best quality of life (I really loathe those words) you can despite the cancer.

Does it fucking suck?

Yes.
Is it getting harder to manage the stress and the worry about lack of advancements and a cure as the years tick by?

Yes, sometimes it feels like an unbearable load to carry.

But am I hopeful that Logan will feel better again and get back to doing her normal things?

Yes.

We do luckily have some of the best doctors in the country working towards that very goal.

The good news is- she is responding to the new medication for blood pressure and the crazy fluid intake and salt tablets are helping to level her back out to a much better, safe and healthy blood pressure.

She is having less nausea and vomiting. She is eating better and isn’t collapsing or complaining she is so lightheaded she can’t see.

It is all positive and is all that really matters.

If Logan is doing well we will focus less on the shitty parts of her cancer and more on the good parts of her life.

We, and her doctor’s are not worried, that Logan will have an overnight major change or these abnormalities will suddenly explode and something major or devastating will suddenly happen to her without notice.

It is not how her tumour works.

In the past, yes, we have seen some quicker growth and metastasis but overall since radiation this tumour has been fairly stable and we have been able to manage most of her symptoms as they come.

We expect this will be more of the same.

Can we say for certain that if last 18 months has showed some increased progression that in another 18 months we won’t see more?

No.

That is the shitty part of cancer. The hardest part is always the not knowing.

But, I think it is promising that doctors are on top of it and I won’t let them miss a thing.😜

I think it is promising that she is responding to every medication and treatment we have offered her over the years despite any slow progression or any damage from treatment.

And what I think is most promising is that Logan is optimistic and she is focused on getting back to feeling well and pursuing the normal things in her life that she enjoys not her cancer.

She doesn’t want to be sick. She doesn’t want to be held back and she doesn’t want this disease to have control over every single part of her daily life.

Her goal is to get back to her job. She loves the kids she works with and the people there. She wants to hang out with her friends, go to parties, think forward to her next semester in college, visit the Okanagan at Thanksgiving and maybe see Drake on Sunday.

For us as a family, we also want to continue to live a life as normal as possible. We want to continue to plan and execute another family trip back to Asia in the coming months because it’s what we love to do together.

Escape all of this shit.

We want move forward with a few new (and currently secret) big life changes that are on horizon and although we feel a little immobilized with fear today we know it won’t last forever and that the only option we truly have is moving forward.

In the profound words of a wise boy who lived a very full life despite his own cancer, “Never give up.” Thanks Spence, we won’t.

We have always known Logan’s cancer would never be gone.

We have always known the choices we made to give the treatment would unfortunately, affect her.

We have always known her life would be different than others and for as long as she is alive we’d sometimes need to move the goal post.

We’ve also always been fully aware that for us personally, as her family, we too would continuously need to adjust our own expectations and learn new ways to accept this life for the reality it is.

Nothing changes that.

No MRI report, no new information from doctors.

In some ways, today, is the same as always and although this report confirms what we have already suspected, it doesn’t change anything.

The plan stays the same and this is just another bump in a road filled with pot holes in a life that is truly all over the map.

The next steps are all about getting her feeling well. Getting her BP up enough that she has the green light to get back at life. (Which is already happening)
We have a swallowing assessment booked for next week (any changes in the brainstem can increase the risk of choking and aspiration- we are just ruling that out)
We are having an x-ray done to check her spine and doing some follow up blood work.

At some point in the next couple of weeks Jared and I are going to sit down with her oncologist and talk about the “what if’s” and discuss her thoughts.

We just aren’t really ready or wanting to go there yet because the reality is we already know what she is going to say.

“I don’t know.”

The truth is, none of us do.

So, that leaves nothing else except to take my own advice and try to focus on the good and not get all fucked up over the bad.

And if nothing else- I guess, at least, that is some sort of plan.

Just another day in a month of childhood cancer awareness.

The title of this blog is ‘Life all over the map‘ because it feels symbolic.
Our life has become a quest to cross off our individual must see’s and experience all the world has to offer together while desperately trying to forget the reality that our child lives with a brain tumour.

Today, however, was a day I was reminded.

Living with cancer means you are always just one shitty symptom away from a trip to the hospital.
Upon arrival to the clinic today Logan’s oncologist asked me if I had a sun burn.

She knows we like to push the limit on how far we travel and probably just wanted to make sure Logan’s symptoms weren’t related to some new strain of the Zika virus.

I assured her.

My redness was hives.

The kind that still manifests even after 11 years of taking your child to the same damn cancer clinic.

It doesn’t get easier.

We did all the tests.
Bloodwork, urine, touch my finger, touch your nose, walk in a straight line, mumble strange sounds.

Dr. Hukin kindly asked very specific questions to Logan about dates and time frames. Likely forgetting that memory is not Logan’s strong suit while obviously overlooking the fact that when you feel shitty for so long- the hours turn into days, the days into weeks, and before long time becomes irrelevant.

We told her everything. Dizzy. Tired. Headaches. Pressure behind the eyes, shaky hands, weakeness, nausea, hoarseness in her voice. Tired. Weight loss, stomach pain. Tired.

She checked her notes.

Laying down she was ok but standing up her blood pressure bottomed out.

Not good.

The last time this happened the tumours were growing but neither of us mentioned it.
You see, with cancer, past performance does not always dictate future behaviour.
It’s random.
Things don’t always make sense so neither of us mentioned doing another scan.
Just yet.
It’s only been three months since her last one and we have lowered the dose of one of her medications so without really saying anything out loud we decide on a plan.

Some IV fluids today, go back up to her original dose of medication and come back in next week.

Logan agreed on the plan and then encouraged me to go to Starbucks.

First thing I noticed when I got back is that she let the ‘new to us’ nurse access her only good vein.
Smart kid.

I told Alan (the not so new nurse) that no one was was allowed to use that vein. He assured me next time he’d shave Logan’s head and find one closer to the primary site.

I am pretty sure he rolled his eyes at me too.

I deserved it. I was in a full state of ‘cancer mom’ anxiety and ready to rip into someone simply because there is nothing I can do about all of this and I hate it.

Being out of control. Being so vulnerable, afraid, and so fucking tired is hard but a’life all over the map‘ is like that. There is no slack and it’s full of rugged terrain and uncharted territories.

One day you are planning a trip to Laos (I planned on sharing this with Logan’s medical team next week😉) and the next you are talking yourself off a ledge and chanting a million silent excuses as to why you shouldn’t beat yourself up, how you didn’t know (even though you should by now) and reminding yourself how next time you will promise to come in earlier.

Because even after 11 years- the truth is- you never really get any better at this.

September IS childhood cancer awareness month but the reality is every month IS September for us and so many other families. 😘

India Chapter two- volunteering

Our class.

Apparently the whole reason for going to India was to volunteer and give back (while healing the deep emotional scars of cancer) which is a big job and one I also didn’t fully grasp.

After arriving in India and realizing that I had signed up for a lot more than I bargained for, I found out I would be spending the next few weeks in the local slums of New Delhi at make-shift school. The children would be between the ages of 3-7 and my primary responsibilities would be to help teach them basic English.

Sounded reasonable enough, but internally I loathed the thought of being placed with small kids. Yes, I read the list of possible placements but it was the last one I wanted to be selected for. To be honest, I would have much rather held the hands of the dying and destitute than forced in to a small room with screaming children for two solid weeks.

I don’t know what has happened to me over the years.

I used to love little kids, but now, I just don’t have the patience for them. Maybe it is the stress of cancer, always feeling like I am living on the edge of cliff, but the anxiety I feel after chasing little kids for any length of time is almost unbearable. I’ve spent 19 years raising kids and it hasn’t been an easy go. For half my life I have been responsible for taking care of the constant demands of others and I need a break. I thought India would give me at least that much and although I knew volunteering with children was an option, I figured it would be the last thing anyone would choose me for.

My skills speak more to compassionate caregiving don’t they? Maybe management, or organizing, or empowering women?
Surely, the people doing the placements would read past the ‘I am open to anything’ statement on my volunteer application and realize it was just the people pleaser in me coming out.
Surely, they would put me somewhere I would be useful and impactful and they would realize although volunteering was supposed to be a selfless act, I had limitations.

Nope.

I fake smiled as they handed me my assignment.

Shit.
Of course- the school with the little kids.

I get it.
This was all about that f’ing acceptance word again wasn’t it?
I was catching on quickly but internally I was also giving the universe the big fat middle finger. There would be no hand holding while watching someone cross over to the other side. There would be no peaceful contemplation of the cycle of life. No self-fulfilling prophecy that I was actually here to make a difference in someone else’s life.

No, this shit was all about me and it was becoming very obvious that I had a heck of a lot to learn about being a better human being. I wasn’t selfless. I was selfish.

I was willing to give, but only on my terms and that wasn’t how this was going to go down.

I signed up for this and said ‘open to anything’ when really what I meant was ‘EXCEPT for children.’
Lesson number 435 in India, be impeccable with your word.

Thankfully, I wasn’t going to be alone at the school because the 75 kids at Vidya Children’s Centre likely would have eaten me alive. I found out the hard way-they like to bite.

Our first day of volunteering started out something like this. It was an unseasonably hot and sunny clear morning in Delhi. We were on time and ready to go to our placement before the driver even pulled up, a rare occurrence, but apparently 3 out of 4 of us were super excited.
Our kurta’s were pressed, our hair perfectly coiffed, and our shoes clean. The bags we carried were full of coloured pencils and we looked fresh and ready for what the weeks had in store for us. We all smiled at the camera as Terri, our facilitator, took the customary ‘off to work’ picture, so proud of ourselves for the selfless acts we were about to preform-Gag.

First day. Eliel, Kristen, me and Sheila❤️

The commute to the school seemed short and when our jeep pulled up beside what looked like a garbage dump I almost had a heart attack.

Denial and shock flooded in. Was THIS really where we were going?
I paused, this couldn’t be right. It looked dangerous.
It couldn’t be possible that we actually had to walk down that long stretch of muddy road in shanty town all by ourselves every day, was it?
This had to be a mistake. Wasn’t there a different school closer to the road we could go to?

Eliel, a testicular cancer survivor and the only man in our group took the lead. Along with Kristen (my room mate) and Sheila from Chicago, I walked down the long road and into the trenches of the slums. It was in the middle of this little ‘town’ that we found the tiny school we would be teaching at.

Sheila looked at me. She could tell I was internally shitting my pants (and so was she I am sure) but instead of coddling me she tilted her head, threw me some of her trademark swagger and blurted out a few words of wisdom. “God is with us, girl.”

Sheila is ex military so everything about her is bad ass and strong including her faith. I like that about her and after spending a few days getting to know her, I decided that she must be on good terms with the man upstairs. You see, theoretically, her cancer is considered stage 4 but right now it is untraceable. I don’t know about you but to me that is a miracle and quite frankly if Sheila was connected to miracles than I was sticking close to her as we walked down the green mile every day.

When we arrived at the school that first morning we were greeted by teachers and the bright, dirty faces of 75 children. It was morning prayer. They lined up and like little angels listened to the headmaster beat his drum and instruct them to give thanks for their blessings.

It was almost too much to take.

Blessings?
What blessings?
“Hhhheeelllllooooo……has anyone looked around here? What are the heck could these kids be grateful for?”

They had to be asking for something didn’t they? They couldn’t ACTUALLY just be saying thank you for what they already had, because by our standards, they didn’t have anything at all.

I had just walked through some pretty unspeakable conditions to get to this school, if you could you even call this place a school. There was no limitless supply of paper, the chalkboards were crumbling and there were no desks or chairs for these kids to sit on. The little shanties I could see through the barbed wire fence down the street were, in fact, their homes and this was in fact their life.
They were dirty. They had lice and what seemed to be hookworms. Their noses were runny and only some had shoes. The ones who didn’t have shoes were also the ones who didn’t have lunches which meant they were hungry. How on earth was I going to teach these kids anything. It made no sense. I looked over and noticed the mats in the corner. One little girl began laying them out. They smelled like pee.

I started to panic.

What did the bathroom situation look like?
I peered around the corner and pointed to Sheila who again tilted her head at me.
Where the heck was God now, huh?

Yes those are the shitters!

I needed a plan. If I was going to be here day in and day out I was going to have to start storing my waste like a camel. There was no way in bloody hell I was using these toilets. This was too much. I wondered, could I relocate my services elsewhere? Was a transfer acceptable in the field of volunteering?
I felt like a total asshole for hating my placement especially when my counterparts looked happy and excited.

Prayer finished while I was still calculating my water intake. Suddenly, all hell broke loose. Kids were pulling me in every direction.
“Didi Didi, Didi this way!!!!”

Kristen and I followed each other to the back of the building. It was filled with about a third of the kids.
Perfect, only 25 of them and we had a teacher. Maybe I could do this. I mean, I could bring myself to sit on those pissy mats to colour and play. They were pretty cute. I had already scoped out cleanest ones and decided I’d pair up with the kids who visibly didn’t have bugs in their hair.

Again, I looked over at my counterparts. They all seemed enamoured by these children. Kristen already decided who her favorite was. Anil, or as I named him ‘ The Fonz’ was the worst kid in the class but she didn’t care, she was in love.
Oh great-not only was I a volunteer failure, I was also a human being failure and it was only day one.

As that first day came to a close, I didn’t feel any better. Actually, I was in full blown trauma. We had learned that we weren’t there to lend a hand to the teacher. We would, in fact, be leading the entire class. The teacher kindly told us that she wanted us to bring photocopied worksheets for the kids each day and asked us to plan daily crafts and activities for the children.

I had no idea how or what skills I needed to instruct an entire class but to top it off the ‘teachers’ were now suddenly relying on us to teach them too?
They explained they wanted us to show them new ideas/approaches from the western world and handed us a book filled with the previous volunteers contributions. Each song we sang would need the words written down. Each craft we made, the teacher wanted a copy along with a detailed explanation of the process.
There were language barriers and so many frustrations with the rambunctious kids we taught and it didn’t take long for me to realize my self serving thoughts about all the good I thought I’d be doing by coming to India was complete bullshit.
I was not doing anyone any favours. The magnitude of the problems here and the needs of these kids was far beyond the scope of anything I could offer. It wasn’t my responsibly to change things. It also wasn’t possible. I felt helpless.

But I was judging it all, and I had no right.
It was not my place to judge what was going on here, how they were living or what they prayed for. It didn’t matter how I felt things ‘should’ be done. Instead, I had to accept what was and understand all I could do for the next couple weeks was simply show up and be present. Oh and bring new pencils.

A very loose rhythm to ‘teaching’ began to form in mine and Kristen’s class. Eliel and Sheila seemed to more in sync with their daily routines but that was in part because they spent an hour each morning doing flash cards with the kids and we refused to touch them because they smelled like poop.

Our approach was more about taking turns wrangling our kids. We would start each day confident it would go better than the last. We always had our photocopied sheets filled with letters or shapes just as the teacher asked. Each morning we would explain a certain word and the kids that could write would try to spell out the letters in english. It was somewhere during the process of bringing out the coloured pencils and crayons when we usually lost control.

In some ways it was just normal kid stuff, like they all wanted the purple crayon at the same time, but there were deeper issues too. Lack of motor skills, hunger, and a desire to steal the supplies for home meant chaos. The constant language barrier meant we couldn’t always settle them down and at times our classroom was more like a jungle gym than a learning facility.
I was tag-teamed by 3 of hardest to handle in the class. I took ‘The Fonz’s’ whistle away and he almost lost his mind and bit me. Then out of nowhere he called for back up and two of his buddies came Out of nowhere to take a chomp at me too.

“DIDI!!!!!” I screamed “OH MY GOD, DIDI, THEY BIT ME!!!” I needed my own back up but poor Kristen couldn’t do anything because she also had 6 hanging off her.

Mostly, that is how it went. We’d call in the headmaster, he would ramble off something in Hindi, the kids would settle down and then we’d start all over again.

We had to do better. We needed to be more organized and more in control so Kristen and I decided to teach them a few simple things in a daily routine. We started small. Kristen was in charge of arts and crafts because between us she is the most creative and I suggested we teach the little hooligans “Peace”.
I love it when little kids say peace and it seemed easy enough to show them that the number two also meant something else, plus, we really needed some peace in our class.

So, peace (which is shanti in Hindi) was the basis of most of our program and each day we greeted each of them with this gesture.
Peace meant they had to try to be nice to each other and us to them. Peace meant we couldn’t let the anger and frustration we all felt possess us. Peace meant we were in this together. We had colouring sheets with the peace sign, we showed them peaceful interactions and told them that peace means also meant love.

Then we showed them I love you, by simply pointing to their eyes, and then their heart and then to who ever they wanted to. Whenever they did something nice, we would tell them. “I- LOVE- YOU” and whenever they did something nasty we held them firmly and said “Peace”.

Peace Didi!

It didn’t always work, but after 2 weeks each kid would chant the words as soon as they saw us. From windows in shanty town, to as soon as we walked into the classroom, they lined up to say peace and I love you.

They also danced with us. It was a good plan. Instead of trying to keep them pinned down all day we decided the last hour of class was going to be dancing. ‘Happy’ by Pharrell Williams was the song of choice and thank God for Sheila and her wireless Bose speaker and willingness to lead the soul train passed the shitters.

By the middle of the second week something had started to shift. Being in the slums got easier. I found a way to look past everything that was wrong and everything I didn’t like or couldn’t accept and just love these little kids for who they were. Just like the grinch, I felt my heart had started to grow. The head lice didn’t matter anymore, I had grown accustomed to the dirty smells of their clothing and I began to see them for who they really were. Beautiful little souls.

These kids, who had nothing by our standards, were haywire and rambunctious because they were excited. They were excited about us. Sheila, Eliel, Kristen and myself were a gift to them. Singing and dancing and drawing with new people was simply fun. They didn’t have iPods or modern technology to distract them, they didn’t have anything better going on in their lives outside of these four wall and so the best part of their day was being with us.

Lucky to have shoes. Even if they don’t match and one is for the wrong foot.

When I realized this, it almost bulled me over with heartache. Never before had just being with someone or being somewhere felt like enough. I have always been someone who thought I had to do more and then do even more. I’ve always needed to buy more things, have more things, go more places, over-schedule, over-promise and over-extend. It is just what I have always been about. I have never been able to show up as my imperfect self and just ‘be’.
Suddenly I got it.
This whole experience wasn’t about changing anything. It wasn’t about going in and writing a better program for learning, it wasn’t about conjuring up ideas for better sanitation or a need to see tangible results for my efforts. It was simply about giving of myself and my time and being present and connected enough to really see these beautiful people and myself for who we really are.

It was about understanding, instead of being understood and it was about learning that each of us, as human beings, are more the same than we are different. The kids in slums of Delhi’s live in a daily struggle. As people affected by cancer we also live in daily struggle and it is because of our struggles that we can relate to each other. It is what makes us the same and breaks down the barrier of separation that exists simply because we live on different sides of the world.

Bingo- It hit me. Volunteering was amazing.

But volunteering in another country sometimes gets a bad rap. They call it voluntourism I think is the term, and during my first few days when I started at the school and was feeling very mixed up the universe was sending me a ton of articles on all the reasons why a person shouldn’t volunteer in a different country. It was weird timing but it also wasn’t lost on me why these articles were flowing in my direction. Of course, because I like to self-punish, I read them all. They had typical statements like-“Big organizations who run these programs are the only ones profiting. People’s lives shouldn’t be exploited and they shouldn’t be treated like animals in a zoo. We are taking jobs away from locals and it is an over privileged first world thing to do, selfish and self serving.” Blah, blah, blah.

Here is what I think.
There might be some truth to the statements above but, in life, there is always an opportunity to look at things in positive light or to focus on the negative. Now, having had the opportunity to experience volunteering in another country I choose to look at all the good it can offer. No, it’s not all perfect and of course no one person who only has two weeks to share can impact major change but I do believe the trickle effect of that person’s intention can be a catalyst to possibility and hope of progress.
Do I agree some of the wrong people might be making too much money and more could be done to help the poor long term? Yes, but I also don’t think we do not have all the answers either. We don’t live their lives thus there is no way for us to truly know what they really need.

While in India, I learned the story of a man who after volunteering in Africa felt the people in the village he visited needed better water. So he went home, fundraised a bunch of money, came back and built a well. Years later, he again visited only to discover that no one was using the well. When he asked why they didn’t use it the response shocked him. They told him that the well took away social time and was causing a disconnect within the tribe. You see, getting water, washing, bathing and playing at the river was part of their daily ritual and it was something as a community they valued. It was sacred. The man had never thought about the needs of the people from this perspective and it struck him how far too often we assume what others needs are. For some reason we think we know better.
I guess unfortunately, being privileged can also sometimes result in righteousness.

Maybe though, people are being exploited….

I thought about this too and decided instead of using the word exploited what I felt was that they were being was open. Open to learning and being vulnerable. Open to sharing and having strangers come in and experience their lives. Open to help. Open to change and on top of being open they were also being very grateful.
Sadly, there is no real possibility for immediate change with children I spent time with India. The teachers know there is not suddenly going to be a budget surplus from the government and the resources will come flowing in. These kids will not likely get a better chance at life. It is this reality that I found heartbreaking and hard to move past. Despite this, it was not sadness or anger or pity that I felt as I walked away from the slums or the kids at The Vidya school. It was hope, that I too one day could find this level of acceptance, kindness and appreciation without judgement in my own life.

I never once got the feeling they didn’t want me there. Even though we hardly gave them anything, I felt a deep sense of gratitude for what we could offer. I certainly never like I was taking away any jobs, in fact, I felt more like we in some small way helped to make someone’s job easier.

Is it an over privileged thing to volunteer in a third world country? Yes maybe it is irrelevant because the one thing I learned is that no matter who you are going into something like this you aren’t going to be the same person coming out. Yes, I was oblivious to how self serving I really was but this experience made me humble.
So, although little was accomplished in the measure of progress by my volunteering if I was able to leave just a little bit of peace and a little bit of love behind and come home with more acceptance and grace than I only have three words left to say.

Thank you India.

India. Chapter one- Arriving

India in a nutshell. The contrast between the ugliness and the beauty

It was an ongoing joke while I was in India that I purged.

I purged a whole lot of negative thoughts that have continuously consumed my mind for over 10 years and I let go of a whole lot of old ways of thinking. I said good bye to things and people that I have been holding on to for far too long and I burned (literally) ideas that were no longer serving me.
Then, in life’s perfect mockery of me, being the only person on the trip without cancer, I puked and I shit and I sweat like I was dying (good ole Dehli belly). I coughed, snorted and hoarked out all the thick grief I have around Logan’s cancer, as well as a few big black snot balls of Indian pollution, and somewhere along the way I also purged all of my blogs I wrote overseas.

True to apple’s promise of hardcore security, the only way to protect myself, from myself, and restore my disabled iPad was to purge it too. So all my notes, and thoughts and words written in the life altering experience that was India will forever stay there. Just as it was always meant to be I assume.

Now, you will only get the second-hand version of this incredible trip. I laugh as I type these words because I was so devastated about losing my blogs yet, it is clear, you were always getting the second- hand version. Today, all I can do is my best to share with you the version of India I suppose you were always to hear.

Here it goes. Chapter one- Arriving.

I stepped off the plane in India tired, anxious and ready for a shower. The long flight via Calgary and Frankfurt was uneventful and I arrived in Dehli grateful that I had a familiar face guiding me through the first few steps of this new country. Harj, a work colleague of Jared’s, was ironically spending a few weeks in India with his family at the same time I was and even though I didn’t know him before we left, I attached myself to him like a small child as soon we touched down in this foreign land.

World traveler/slash/chickenshit.

Saying goodbye to my own tribe at YVR

Harj and his family getting ready to leave me at the Delhi airport

As I followed Harj, who followed the herd of people through the arrivals corridor, I was in a daze. The Delhi airport is humongous and the arrivals process was long and confusing. My first introduction to India as I reflect, pretty much sums up all of India, long and confusing.
It was two o’clock in the morning and I was scared shitless, about to be alone, and feeling like I had made the biggest mistake of my life (why the hell did I ask for donations to fund?) when suddenly my passport was stamped and I was officially let in the country. I got the green light which meant no further searches were necessary, just a strict reminder that my visa was only valid for 30 days. “Get me the hell out of here” I thought. A 30 minute visa would have been fine.
My eyes were scanned and finger prints were taken and I did not crack a smile in what seemed like a very secure process but I wondered, “Was it even possible to track anyone down in a country of 1.26 billion people. What if I got lost in India? How would anyone find me?” And just as quickly as the thought entered my mind I was told I was free to go.
India or bust!
I was on my way about to walk all the way outside of the baggage claim to the Costa coffee shop at the main entrance….. all by myself.

Me alone with backpack on my way to meet my new tribe.

With my large back pack in tow I arrived at the spot where I was to meet the rest of my tribe. They too were touching down at god awful times in the middle of the night but I was reassured. I would know who they were by the matching T-shirts they would be wearing.

Shit!!! My T-shirt didn’t arrive in the mail.
I started to panic, couple that thought with the fact I suddenly remembered I was also the only one on this trip (facilitators included) that personally didn’t have/had cancer and I suddenly felt like the black sheep of a group I hadn’t even met yet.

I looked around suddenly feeling desperate. Yep, only one coffee shop just as the email stated. I couldn’t possibly get lost. Perfect, I thought, only one lonely coffee shop in the middle of this hallway and NO fucking lounge to get a glass of wine. My anxiety flared up. This was already a long trip and I still had 17 days to go.

I sat at the coffee shop until around 4 am. Finally, 3 matching T-shirts caught my eye. Keeners.
It was time to go.
Our driver ushered us outside and immediately Delhi hit me like a ton of bricks. It was a total assault on my senses. Unexpectedly warm, with a faint smell of incense and urine. Dust so thick that the air I breathed immediately made my lungs tighten and SO many sounds my head started to spin. Horns, voices and a language I couldn’t understand made me feel very unsettled.

Still, I tried to be rational. Time was not on my side, that was all, I was just tired. I tried to reassure myself and quickly decided that instead of becoming completely unglued I just needed to put one foot in front of the other and follow the matching T-shirts to the large jeep parked outside the front doors. Once I could see things through a fresh set of eyes everything would be fine. Instead of making small talk, I intended to doze off on the way to the flat but as we drove through the streets of Delhi in the wee hours of morning I was immediately struck at how alive the city was. It baffled me to see how many cars were on the road. Traffic inched in a chaotic yet harmonious way and just like an organism, the process of six cars, 4 rickshaws and a garbage truck in three lanes of traffic made perfect sense. There were people literally EVERY WHERE. My head darted from side to side trying to catch a glimpse of all the sights. Everything was covered in dust, and it was almost like viewing a picture in sepia tone while at the same time colors popped and were vibrant and alive with beauty. I felt awake and alert. I looked over at my new tribe members, their eyes as wide as saucers. A calm fell over me. Thank god they too were in shock. I was no longer alone.

Small Hindu temple close to our apartment

Our neighborhood

The rest of the group of 14 arrived throughout the following day and we spent the first few hours of our time in India in a small flat with a tiny kitchen. This tiny apartment/office/bed and breakfast would be the place we ate our meals and participated in volunteer and cultural activities throughout our stay but for now it was simply the meeting point before we moved to our own private guest house.

In years past we were told the flat is where all the fresh chapter groups have stayed. How on earth they survived I don’t know. The place is not only tiny, but really warm and has no windows. The overcrowded rooms consist of miniature bunk beds (which even my feet hung over) and bathrooms with toilets labeled slimeline that don’t flush properly. There is no personal space (which is pretty much India in a nutshell) and only two small torn love seats to unwind on. For any group, this confined space would be a challenge but for 14 people who had been through cancer the flat seemed like an impossible place to live.

I mean, I get the whole point of this experience is about getting out of our comfort zones, connecting with each other and being vulnerable, but let me tell you- I did one heck of an internal happy dance when I heard that we would be the first group to ever be upgraded to much better accommodations.

World traveler/slash/chicken shit/slash/princess.

The new apartment was about a 10- 15 minute walk away from the dinner flat (depending on traffic) and once the entire group arrived, the fourteen of us, eleven women and three men were packed up and moved in to our new and improved quarters.

Communal living room at the guest house.

Upon arrival at home base we were assigned our rooms, and our roommates. This is new digs, just minutes down the road felt clean and fresh and although it was still quite small it was a definite improvement. Things were looking up. I could handle this. This place felt welcoming and although it didn’t happen immediately, the guest house quickly became a home and fourteen strangers who started out as a tribe also grew into a family.

In a tiny bedroom, with 2 twin beds and a cot I spent the next two weeks getting to know, and fall in love with, my roommates. My now obvious soul sisters Kristen and Katrina were the names of the gals I bunked with.

Kristen a lifelong New Yorker, with no accent, a love of wine, art, and everyone she meets, spent most of her life working at famous magazines and took the bed closest to the shitter (her first mistake).
She is likely one of the most kindhearted and beautiful people I have ever met. She is doing a great job living an amazing life and inspiring others albeit with stage 4 breast cancer which, I have to add, does NOT define her. Today in between chemo treatments she is taking time to finally rediscover herself all the while developing a pretty cool app, doing yoga, and traveling the world. I immediately identified with her uplifting spirit and her life motto that cancer was not a gift, but rather a reset button.

Katrina and I too had an instant connection. We both arrived in India from the west coast at the same time via different routes and from the very moment I met her it felt like I had connected with a long-lost relative. Our sense of humor is interchangeable and she is totally hilarious. In some ways I feel like we’ve lived parallel lives or as we decided we were the ‘Same, Same but different’ (common Asian quote). She is a single mom with two beautiful children. A lymphoma survivor who, now, only two years post treatment, is struggling with the reality that her ex-husband and the father of her kids is dying of stage 4 colon cancer. She is a stand up comedian from Vancouver and I am completely in awe of her. She doesn’t see herself as strong but she is tough as nails and has a gift of finding all the reasons to laugh at a time when most people with her life would just break down and cry.
She took the bed closest to the closet because she is also no dummy. Although she forgot to pack most of what she needed (blame it on chemo brain) her bed was placed perfectly so each morning she could just reach in and grab first dibs on my entire wardrobe.

And as for me, well, I took the cot underneath the TV at the feet of both of these beauties.

We lived on the main floor of the guest house with Terri and Pasha, the leaders of our program, while everyone else in the group occupied the top floor of the apartment.
It was probably very smart of Terri to separate us from the group, because basically, we never shut up.
Our nights were spent (until, I, always the first to pass out) acting like teenage girls, giggling, chatting, crying and of course talking about boys. We even snuck out (OK we were allowed out but given a strict 11pm curfew) to share a couple of glasses two hundred dollar wine.
I have no doubt after meeting each one of us personally, and hand picking this tribe, Terri knew that we’d do just fine bunking together. It was perfect. We were the three Amigos of India.

The two K’s and I had one bathroom, one towel each, and in the beginning we were very courteous by making sure we were always covered up, taking quick bucket showers and folding away all of our things. That hoopla lasted about 2 days.
Before long, we were planning who got the hot water, sharing our clothes, comparing the fullness of our natural and reconstructed breasts and of course throwing all of our shit around the entire room. For me personally, there were days I was literally throwing my shit (and puke) all over the room. Sick as a dog, poor Kristen forced to listened to my heaving in the bed beside the bathroom no doubt wishing she had chosen the cot.

They were great roommates and despite such cramped quarters, I never once felt like I wanted them out of my space. It was the first glimpse at acceptance that I would feel in India.

Kristen from New York

Katrina from Vancouver

The three amigos in a rickshaw

Instant friends for life.

Speaking of acceptance, upon arriving in India each of us were to choose a word that we wanted to leave with, acceptance was the word I chose and let me tell you, it is a big f’ing word.

If you have read any of my other blogs, or know me personally, I am sure you know that I have struggled with acceptance for a very long time, maybe even all my life.

I mean how on earth does one truly accept the reality that your child has brain cancer and it could flare up at any second? How do you accept the fear that now lingers just below your surface but consumes your entire life? How do you accept that you’ve had no choice but to give up your career, your identity, and ultimately your own self. And that despite this new direction life has taken, despite the friends and family you’ve lost this was always the path you were supposed to walk.

How do you accept that somewhere inside you, you are still ‘enough’ and that your life ‘according to’ (which you were perfectly happy with I might add) suddenly has to become a life ‘in search of’.
And to top it all off, how in the world do you even begin to wrap your head around and accept that your whole entire journey has now lead you to some tiny apartment in India with 14 strangers on some sort of self-imposed wake up call. Toss in fact that I was about to be thrown into extreme poverty, unspeakable injustice and filth while trying to find some resemblance of my former self or inner light, or whatever you want to call it.

It was almost too much.

Almost.

I could barely follow any of the chatter around me and to be honest the only words I could think about were the ones stuck on repeat in my head. “What the fuck was I thinking?”

“Who am I kidding?”

“Get me the hell out of here!”

I had no idea what to do. I had no wine to numb me, no comforts of home to hide away in. I had no friends to call so I could contemplate this insanity, and no family to cuddle me and tell me it was all going to be alright.

But, my biggest challenge was that I, personally, also knew I had no god damn idea how on earth I was going to find any bit of acceptance in this huge pile of bullshit I had piled up in front of me.

But it didn’t matter. Tomorrow morning would inevidently come and when I woke up I would be handed a shovel -one I apparently asked for. The ‘shovel’ would come in the form of a bag full of crayons and colored paper and like it or not I’d be heading out into the slums to volunteer and give what little of myself I had to share.

Apparently, I was about to find out if I could somehow muster up the courage to look at things through a new set of eyes.
Then, at the end of each day I was going to report back to this group. Listen to their experiences and contemplate if I had any better luck with personal growth than they did. We would do this together, but we would also do it alone, and somehow, I was told, that if I found the very elusive acceptance it would be through spreading kindness and humanity. It would be because of a very basic understanding of human struggle that somehow my own life’s journey would like start to make sense. There would be a deep connection, with others, but more so with myself, and this is how my fresh chapter would begin.

Apparently, I just needed to get curious, I just needed to breathe, I just needed to honor, and I just needed trust the process.

Like a deer in headlights I listened. It all seemed like A LOT of unreasonable nonsense, to be honest.

I had no idea if it was possible, but I was going to try.

It was too early on in the program to cop-out or to say I didn’t buy in. Plus I had traveled all the way to India to do this. I asked for support, I wrote a big long sob story on how I truly wanted this experience, an opportunity just for me, and now here it was. I questioned myself. Was I really strong enough for this? Then I shook my head, “Shit, if these people can do it, despite their cancers, than I need to pull my head out of my ass and believe I can too.”

And just like that I decided to stop being a wimp. I chose the word acceptance and I knew deep down in my heart that now was my time to try and find it.

Terri hugged me, knowing I yearned for comfort.

She told me that India had a funny way of giving everyone what they needed, so I decided to go with it. Trust, be open, Thank you universe.

I nodded. Silently I was myself proud of my revelation and felt lighter as I stumbled to bed with my new kurta in hand

I even caught myself thinking one last time that I wish I’d picked a different word.

“You really need to stop trying to be such an overachiever.” I said quietly to myself as I closed my eyes.
It would be fine. Thank god it was now after midnight and I only 16 days until I was back home where miraculously already everything seemed so much easier to accept.

I began to drift off…

And then…… NOOOOOOOO!!!!!!! just like that, the sound of a freight train.
WHAT??? My perfect roommate Kristen snores?

I sat up looking at Katrina who simply raised an eyebrow. She was wide awake and looked like some sort of nocturnal hamster.

I rolled over now fully aware.

Shit was about to get real.

EVERY SINGLE THING about this trip was going to be about leading me to my path to acceptance.

Oh Great.

There was no way I was getting off the hook easily. I asked for acceptance, and I now I knew, I had just over two weeks to cram my way through one hell of a crash course on the path to enlightenment.

Bring it on, India.

I was ready.

Count down to India

Handmade gift from my friend Kendra to offer courage, protection and openness of the heart. So beautiful

I officially leave for India in two weeks today and already I feel like I have been on the trip of a life time~

It has been quite the ride.

This opportunity of going across the world to volunteer in a third world country sort of came out of nowhere, but, since jumping on board with the intention of making it happen, really amazing things have occurred and everything is falling perfectly into place. Go figure.

First off, because of all of you, I raised all of the money I needed to go- in less than two weeks I might add. It is both mind blowing and amazing to me.

To try and write down the proper words to articulate the deep gratitude I feel about this seems impossible. You will honestly never know how much this means to me. It is not just dollars donated, it is also the kind words written and this ‘once in a lifetime’ opportunity you have given me that has filled my heart and fed my soul. Thank you so VERY much from every piece of my broken self for all you have shared. I am in awe.

For me, asking for the financial support was really, really a hard part of this journey. I feared the judgement and my inside voice immediately started telling me all the reasons why I couldn’t ask, or shouldn’t ask, or even expect, for that matter, that people would want to invest in me in this way.

I could hear the naysayers….

“Who does she think she is, I mean god she just got back from a huge trip in Asia and now she wants us to pay for another ‘holiday’ for her?”

“This is crazy, I mean maybe she should get a job and pay for this trip herself if she wants to go away and do something like this?”

“I mean really, if you want to help people, help people here, you don’t need to go all the way to India if you all you truly want to do is give back.”

“Why should she get to go? She has been so many places, someone who hasn’t been as fortunate as her should get this chance… give it to someone else”

“What about taking care of your own kids? Jared is the one that has to work, it doesn’t seem fair to put everything on him…”

All the reasons why this couldn’t happen for me filled my mind and tormented my heart.

It was my first hurdle to get through and my first lesson in this amazing program.

Terri, the amazing founder of A Fresh Chapter Foundation walked me through my feelings and helped me understand the vulnerability surfacing in my emotions. She told me to trust that this opportunity had presented itself for a reason and that the only thing that truly mattered was if the decision to accept it came from me or not.

She said it didn’t matter what anyone else thought or didn’t think, that once I found the answer within myself, whatever it was, the universe would show up to support it. Bang!

My friend Steve Dolling offering support, the way anyone would. Margarita, meditation, pinata on head- perfect

She also told me that I was running out time and needed to get my shit together. This very deep and personal answer needed to surface rather quickly.

She had a spot to fill.

She encouraged me to give myself two days of contemplating. One day feeling (and not thinking) what it would be like if I decided to accept the possibility of going to India, and the second day feeling what it would be like if I decided now was not the right time for me. She said to let go of attachment to the answer and during the days of contemplation-to just feel.

Easier said than done- my mind swirled trying to think through the process.

At the end of the two days, I think I was supposed to have an epiphany and know exactly what to do, call her and let her know my new profound decision.

We spoke on a Wednesday.

FIVE (not 2) days later, FOUR sleepless nights and countless phone calls to my most valued friends and family, left me feeling even more so like I didn’t know what the hell the right thing was to do. It was now Monday.

I am a Libra. I can’t make a major life decision like this in TWO flipping years let alone TWO flipping days.

I convinced myself that Terri had picked the wrong kind of girl and I couldn’t go.

Plus, what if I said I would go and then I put up the fundraising page and no one sponsored me? I wasn’t sure my heart or my ego could take that kind of beating- Did I even want to know?

If that happened it would mean being on the hook for over 5000.00. Not that at other times in my life I wouldn’t have jumped at it, but financially now was not the time for selfishness.

I did just get back from Asia, and of course, as luck would have it, our final audit bill showed up on the same day I was presented with the idea of this trip. My only option if I was going to try and go, was to fundraise and help off set the costs, which meant putting myself out there in a really uncomfortable way.

Who the hell was I kidding?

Insert negative self talk “If I have time to plan a volunteer trip to give back in India, join an odyssey program and spend the next 6 months pondering my own purpose and self worth, than I have time to figure out a way to do something tangible like paying off this f’ing debt.”

Screw it- I decided I wasn’t going.

The naysayers were right and they didn’t even need to say one thing to me. I was already telling myself all the reasons why I shouldn’t do this.

Amazing how we are always our worst enemy….

Anyhow- we all know how that ended.

In true Libra fashion, I couldn’t let the idea of this trip go.

Not going to India didn’t seem to sit quite right with me. I thought about all that happened in Bali, I thought about the resolutions I wrote down staring right at me on the paper in front of my face.

“Work on being more open, Try new things, get out my comfort zone, Truth- live it more often, find more passion, do something I love that gives back to others”

Lesson in accountability- if you don’t want to be held to it- don’t write that shit down!

“Maybe I should go?…” I said to Jared for the seven thousandth time late Monday night, 3 days past my deadline.

“Yes, honey, maybe you should.” he said exhausted.

“But what about you, is this wrong to put on you?” I was just looking for encouragement.

But instead of stroking my ego one more time he sneered at me completely annoyed.

“You know what is really irritating about you- Jenny?”

Jared never talks to me like that

“What?” I said shocked at the revelation that ‘I’ could actually be irritating.

“Yes, YOU- you are so irritating when you say that you want certain things in your life, and then when things start happening and you question them. I mean fuck- here I am wanting to make some serious life changes and nothing is coming easily for me. You on the other hand have something right in front of you, offering itself right up on a silver platter, something that might actually change your entire life, and you are being all whiny and like ‘I don’t know, should I?’ Yes, Jenny you are really being irritating and bugging me.”

Silence- one last glance and he stormed off really quite torqued at me.

Sheepishly, I took my glass of wine and moved into living room, clearly there was no point in discussing this anymore with him. He was clear; I needed to make up my own mind. He was done trying to help me.

I sat down a bit rattled, knowing I needed to make a decision and I did what I always do when I am lost and need an answer. I wrote down my thoughts.

“What do I truly want in my life and how can this experience help shape me?”

Two words came to my mind right away,

HAPPY

AND

HUMBLE. (asking for donations- right?)

Period.

I mean not really period. Because those of you who know me, know there is rarely a period in my conversations, even with myself, but, there was a surprisingly long pause as I typed the below email.

Hi Terri
Ok.
I am in.
Gulp.
Maybe we can start the process of getting my fundraising page, my registration and whatever else I need to get started, tomorrow at some point?
Gulp
By then, I think this nervous, excited knot in my stomach might be a little more settled and I’ll be a bit more ready to focus on what I really need to do to make this happen from the financial perspective. The rest of the logistics, I have beaten to death. There are no other obstacles in my way, I have the support from friends and family to help out, so time wise and everything else wise, I can go.
Gulp.
Scary and awesome.
And did I mention
Scary…..
Cheers,
Jen

BINGO- Just like that, I was going to India.
She didn’t hesitate or wait until the next day. I got the “Welcome to the tribe email” a few hours later and the rest is history in the making. Literally.

Sooooo much has happened in the last three weeks.

I raised all the money I needed to go. No naysayers (at least not to my face) no hesitation. In two weeks (to the day)- boom the cash was in hand to be paid in gratitude to the foundation; I was fully supported, imagine that?

I received a zillion kind, loving, honest, heartfelt and super courage-boosting messages- all of which I know I need with me so I copied and pasted them into the journal I am taking to India.

Yes I started a journal, messy and handwritten, all my own words, with my own scribbly thoughts. The book is a gift from Logan. It is perfect, and imperfect all at the same time and I love it.

pages of my journal

I have read two new books in two weeks and four new blogs. I have applied for an Indian Visa, and I booked my long and totally brutal flight to Delhi via Calgary and Frankfurt….and then back to Seattle, ugh…..

Visa pic- smiling on the inside?

Basically, I got committed- fully- and I got a typhoid shot.

And then I broke the ice- via cyber space and got acquainted with my fellow tribe members.

What I know is I already have one friend who is also from right here in Vancouver, and one friend from NYC who named her favorite food as wine- and added pizza. I plan to visit her after this is over.

Without knowing, one of Jared’s clients booked the same flight as me to Delhi so I now know I have someone to drink wine with on the way there (dry camp in Delhi). I also don’t have to worry so much about being alone when I arrive in a foreign country, so that feels good.

I have an Indian friend who is sending me weekly emails with videos and information about everything cultural in India. He’s giving me contact info of friends who live there and personal hygiene tips- Thanks Andy.

Everything seems to be falling into place. In fact, so much so, that when I went to get a hair cut last night at a brand new salon and my hairdresser told me that the only place she has ever traveled to is on a volunteer trip to India,

I just smiled inside and said “Of course you have, please share.”

I have learned so much already, and NOW I feel like this was the perfect decision for me at this time in my life.

Having said that, Terri did tell me that I was going to have a total nervous breakdown the Tuesday after I arrive at my volunteer placement. Apparently, I am going to tell her how much I hate her for doing this to me, and how much I want to go home. Little does she know it is probably going to be because of the ‘no wine’ policy and not the poverty or hard work of volunteering.

The hard work I am actually looking forward to. Without being all Oprah Winfrey again on you, I could use some ‘Ah ha’ moments in my life- The few that have already started to flow have brought awareness of what is to come and I am excited to soak it all in.

First ‘ah ha’ I am stunned at is how I thought that I had such a big decision to make, and how I was soooooo torn about what to do.

Things are pretty stable for us right now with Logan’s health. Its not all perfect and easy but stable none the less- the best it has been in 10 years. Jared works from home so he can easily help with the kids for a short time. Brody will be on spring break and friends and family are stepping up like wild fire- my family will not starve. The money, yes- it manifested quickly and easily. I know I have been given the universal green light to do this.

Terri was right all along. She knew how this works. Obviously not her first spiritual rodeo.

Some of the people in the group don’t have it as easy as I do and it has been an awakening to ponder others circumstances. I need to spend less time in the drama of my life.

One beautiful lady who is part of our tribe disclosed that she is now deemed terminal and although it was a tough choice to make, she decided that it was important to her that the son’s she is leaving behind know that she chose to give of herself when she had almost nothing left. She wants them to remember her and her legacy as someone who gave selflessly of herself whenever she could.

Holy shit.

Another girl recently relapsed in December and is coming on this trip just as she is starting a new treatment.Weakened immune system, but strong spirit.

A fellow participant shared that she was diagnosed with cancer, at the same time as her husband and her best friend (who sadly passed away). To top it off had just had a baby and had a young toddler to care for while going through all the hellish shit that comes with treatment for cancer. She is a stand up comedian and has still found ways to smile and make other people laugh.

Fuck me-

So, NOW instead of now feeling like I was chosen to do this trip like some sort of bloody hero, I am now thinking “Why me? I am so not worthy….”

And this is where the ‘real’ hard work begins.

I am expanding. Listening, opening, reflecting.

There is no going back.

I get it. I can see it. I can feel it all happening.

And

To be completely honest it scares the shit right out of me, because I already know, change, is 100% inevitable.

T-14 days and counting.

Love, Pray, Drink (Wine)~ I’m going to India

I am not even sure how to begin this blog, because the words I want to share seems stuck somewhere between the knot in my stomach and the lump in my throat.

It doesn’t happen very often, but I don’t know how to say what I want to say (Sorry in advance but I am about to mumble).

I am a bit in shock, and a bit in awe. I am teetering somewhere between questioning if I am about to do the right thing, and scared shit-less about doing it.

Despite the fact that I think I might have asked the universe for this opportunity- (apparently writing things down works) I don’t know if I was entirely open to how this was about to manifest itself.

I am a Libra, so basically, I feel completely out of balance and my head is spinning.

I know- you are already thinking “What the F?” so I’m going to get on with it.

Up to you, if you want to read ahead. This post is about to get deep and long and in the end I will be asking you for something.

If it seems too much, you should close your browser and move on because I know one thing- I am going to need all the support I can get around this decision and any negative thoughts from cyber world won’t be helpful.

I’ll start from the beginning (well kind of)

It all started June 3rd 2005- you know what day that was- The worst day….

So, skip ahead 10 years- and 2015 did not just have tough days, it was tough year.

There were many things that were great about it, but to be honest 2015 was one of the toughest years, we as a family, have ever had.

For me, personally, I really struggled. Every time I thought we turned a corner and inched ahead, something would slap us in the face, try to drag us down, and like burning a candle at both ends, after a while, our lights just fizzled out.

Normal life is not normal any more in our world and its hard to share. It feels ungrateful to write about how difficult things can be, when I know damn well I should not complain. Thirty four funerals for amazing kids that never got the chance Logan has is a constant reminder how lucky we are.

But lucky isn’t lucky in the brain cancer world, and cancer is not black or white.

Now, every day is a challenge and readjusting expectations and trying to find more joy and less worry and seizing the stolen moments and accepting that life will never be the same again- is our new normal.

Normal for us is about 40 medications a day to manage, routines that include support groups and support systems, learning disabilities and pain- so many headaches, and doctors appointments. Weird and foreign worlds of disability organizations and programs where people living with a brain tumors really don’t fit.

It seems that common sense to us doesn’t make any sense to anyone else and nobody really ‘gets’ us. There is a constant nagging worry that the tumor might, at any second, yet everyone treats us as though we should be ready to move on- be the heroes and inspire others to fight the good fight.

So we do the best we can.

We step up, we smile, we share our story and have as much fun a we can whenever we can. We really do and it is not all bad, but just beneath the surface our family is a bit more fragile than we portray and to be honest, 2015 was pretty darn shaky for us.

Our goal has always been the same, since June 3rd 2005

LIVE. NEVER GIVE UP. KEEP MOVING FORWARD. HAVE NO REGRETS but it is harder to achieve these goals year after year and sometimes we sort of lose our momentum.

I could write an entire book about capacity, about enduring life when you have no choice but try to accept circumstances and situations that are completely out of your control and ones that you despise.

When you live knowing that life could take an awful turn at any moment you feel obligated to never feel shitty. I could type endlessly about how it feels to be stuck, and helpless and about what it is like to desperately long for the ignorant bliss and nativity that you once took so for granted.

Set back after set back makes it harder to enjoy the little moments. It is just part of the deal.

And you ask- “What the F is this all for? Can’t it just get better now, haven’t we all learned enough?”

I have so much guilt for these feelings. You have no idea.

I have so much anger for what has happened to my child (both my children) and I feel tortured inside knowing that saving her, has come with such a cost to the quality of her life and to all of ours.

Life is like a roller coaster. One that is fast and fun and exhilarating but at the same time one that you aren’t ever allowed to buy a ticket to get off.

2015 was a rollercoaster ride that was amped right up.

We started the year being audited by the CRA going back 3 years- (because of our rental) almost at the exact same time the geothermal system in our rental property finally kicked the bucket and although we should have been prepared for both- we weren’t, so, it cost us shit ton of money.

But it is only money. Having less cash is stressful but honestly, the one good thing that comes from cancer is perspective. Money is just paper. You can always make more dollar bills. It is not that bad. Also, if you make the minimum payment the bank always give you more credit. Not such a bad system, we roll with it.

But, for Jared being the only one working, he struggled in 2015 more than ever to make his ever increasing sales target. The falling Canadian dollar and current state of the economy didn’t help one bit as he busted his ass to make his budget and pay our bills. Jared is fiercely competitive and watching him stress caused our family much stress. He is kind of like the captain of our family plane- he never runs up and down the aisles, or panics, and Jared did a lot of panicking in 2015 so that too was really hard on us all. We weren’t used to seeing him unsettled.

Logan graduated high school, which for most kids is totally awesome but for her (and all of us) meant a big fat question mark. Her graduation was such an milestone but, was achieved in part to the huge amount of support and modifications her teachers made for her. When that support was suddenly ripped out from underneath of it was an unexpected adjustment. We didn’t know where to turn for help and we didn’t realize how much we relied on the help we were getting.

We had numerous scans and assessments to find out what Logan’s future potential could be which only solidified the damage done by years of treatment. Physically, psychologically and emotionally this disease has taken it’s toll and the late effects of treatment on her body and mind has been devastating for not only her but all of us that love her.

It is heartbreaking to watch. This is a time in a young adults life when opportunity should be on every horizon, but for Logan the doors are closing faster than she can get to them and the answer seems to be no at every turn. “No you probably won’t ever have children of your own, No you can’t take this program full time, No you can’t drive, No you can’t stop this medication, no Logan you can’t, you can’t , you can’t”

But be happy. Live life. Be grateful. You are a survivor.

We finally upped her medications and got a good mojo at the end of the year. Her pain was under control and we navigated the new world of difficult college courses with very little support. As any parent knows, teaching your own child is impossible, try teaching a child with a learning disability when you don’t even fully understand the extent of disabilities.

I’m sure you can imagine the large amount of tears that were shed, on both ends.

This year we fought the system, appealed decisions, begged for help and finally got a plan together that supported getting her into a college program very part time, then we fought the teacher who didn’t think she should be there in the first place.

We got her a job volunteering at a daycare (which she loves and is perfect at) We drove her to volunteer at the Ronald McDonald House and at Camp Goodtimes (so much driving) just so she could feel part of something and continue to give back.

We agreed to be the face of the Canadian Cancer Society 2015 campaign and we raised a bunch of money for brain cancer research, because it is the right thing to do. We shared our story and we also gave back all we could- we smiled in gratitude for the opportunity to be part of a better solution for brain cancer, and inspired others to do the same. We committed to a competitive lacrosse schedule, and to encouraging our son who has an ambitious and creative mind to pursue what he loves- acting. We went to so many auditions, learned so many scripts, and worked through the emotion of so many rejections. We started cyber school and the frustration of homeschooling, but not really homeschooling, while navigating our way through new age technology we don’t have a clue about.

And then…..

At the end of the year, we collapsed.

And we did what we always do…….

We ran away from our problems, and our life.

We booked a trip to Asia, threw it on the line of credit and got basically got the F out of dodge right before holiday season’s gluttony began. We just knew we couldn’t handle it this year. We desperately needed to recharge. So, we flew to the other side of the world to drink new brands of beer under different palm trees. We saw very different cultures and ate very different food, and we put ourselves in some very uncertain situations only so that we could find our way out.

We connected as a family, we laughed, and did exactly what we hoped to do- we escaped our reality and got one hell of a tan (bad, bad cancer family- I know)

When we came back, 2016 seemed much more promising. We were refreshed and ready to ‘live life in the front row’ and head to the ELLEN show (yes…that is another blog- it was so amazing, we had a fabulous time, and I will share all the details)

But something was not quite as I expected when I got home and it was almost as though I was yearning to go back.

Here is the deal, Asia but specifically Bali was like a freaking awakening for me. Going to the Yoga barn, Soulshine and the whole experience with Michael Franti, spending a few days navigating my way through new situations and a new country gave me some sort of a super powers. Or at least that is how I felt when I was there- like I had super powers and then when I returned home I felt like those powers started fading.

I don’t know how to explain it- because I know they are not super powers.

I also know that I am not any different or better than any one else but in Asia I felt really connected and present in my life and I was fully aware of it.

I knew I wanted more of that feeling at home, but home, is just, well reality so how do you get that?

It was almost like while I was away I could almost see my thoughts creating my reality (OK a bit much- I know but kind of true).

I could actually feel myself shifting out of my negative thought pattern and I had this knowing that it was time to let go of the past. Like a fog lifting I could feel myself moving away from the resentment and anger and guilt around what cancer has done. I was ready to figure out how to approach the ever allusive emotion of acceptance which has been dodging me for so long.

I was aware in Bali, as all the cool things were manifesting, that I was living life on purpose. I was in harmony and it felt great.

I hope what I am saying makes sense to you because it barely makes sense to me, and it is a bananas concept- but for those of you who ‘get it’- you will ‘get it’

It just felt honest. Like somehow over there, that I could really attract whatever I wanted in my life. I don’t feel like that here at home.

I mean, really, here I was I was floating around on the other side of the world sitting across the table from one of my favorite musicians and heroes- which should have been completely impossible. Even now as I think about it, I pinch myself, I know it really happened but how did it happen? and how do I attract more of that awesomeness?

So, my impossible reality was happening in right front of me, and so were my thoughts. So clearly, that I could actually feel them forming and I knew each one of them were going to happen.

This was the first time in forever this has happened. Almost since Italy chemo (for those of you who have followed our story) and we all know how good that worked. Bingo. I need more of this.

I chatted a bit about all of this with Michael’s good friend Scott and a few of the other yogi’s at the retreat the day before. Everyone was totally supportive of my deep contemplative thoughts since they were all in Ubud doing the same thing.

I was encouraged to write down my goals for 2016

Here they are (I should note- this list originally began with “Drink more water” which somehow got axed from the list because it didn’t seem profound enough but is one thing I really do need to do)

Work on being more open and saying yes. Be limitless and expressive both physically and emotionally. Don’t hold back. Be impeccable with my word. Mean what I say, say what I mean.
Try new things as they present themselves. Get out of my comfort zone. Don’t worry so much about how I look in front of others- just participate.
More listening (I have so many incredibly smart people around me)- less talking (tough for ole’ loud mouth me)
Truth- live it- own it- speak it
Find more passion in my life, in my marriage- and in my self. Focus more on things that I am passionate about and love to do. Surround my self around people who are truly passionate about life and love what they do.
Create a job or any opportunity to do something I love- that gives back to others
Work on acceptance- of so much, but mostly myself. Don’t let fear, guilt, shame anger, and sadness own so much of my heart.

Pretty intense right???

So I come home all recharged like I’ve just mastered the path to self realization, all preachy and feeling like a brand new person.

Lucky you- if you didn’t get a chance to speak to me during this time. ‘Got her shit together Jenny’ is quite something if I do say so myself- (insert sarcasm here)

I mean who was I kidding a few hours in downward dog with a famous musician I thought I was Oprah freaking Winfrey. “Come on!”

Well, the good news is the universe didn’t buy it for one second or maybe it did.

I still don’t know- but what the universe did do was serve me up an opportunity.

It took one look at my New Year’s resolution list- amalgamated all of them together (with a focus on #6 ) said- “Prove it.”

And just like that I am going to INDIA….. IN 5 WEEKS.

Holy shitballs!!!

Now India, at all scares the shit right out of me to begin with let alone in 5 weeks.

But insert the fact that I am going alone, or more so with group of cancer survivors and caregivers I have never met to volunteer and give back in some of the most impoverished places to some of the most vulnerable people in India and I am feeling really, really afraid.

This is SO outside of my comfort zone, I can’t even begin to tell you how outside it is. First off, India has never been on my radar. My shallow self knows it doesn’t have the same beach appeal as my other fancy vacation spots, apparently there is no swimming pool.

But this is SO NOT A VACATION.

And to be honest this is the farthest thing I would ever even consider enjoyable- because I am so scared of it. I know from the deepest part in me that it is going to be life changing and incredible and probably one the best things I have or will ever do in my life but the thought of it still makes me extremely uncomfortable, completely vulnerable, and totally nervous. Which I have been told is the whole point.

The connection to this program http://www.afreshchapter.com/fresh-chapter-alliance-foundation was made through a fellow oncology dad. I have no idea why or how he knew or thought this would be a fit for me but he decided to link myself and Terri (the founder) together and I instantly could relate to her and her vision for her foundation. As it turned out a spot had opened up (sadly the reality of cancer) so after a few long phone call discussions and days of tossing the idea back and forth we both decided I should join this March program and participate.

So I am going to INDIA IN 5 WEEKS!!!!

I have literally spent days with my throat in my stomach contemplating, I have made vats of chicken soup (most of you will get how bad that is) I have drank a couple bottles of wine (with no answers at the bottom) and I haven’t slept much.

I have asked a few very smart women who I treasure dearly for their honest advice and I haven’t liked everything I heard, but I owned it.

I was told that maybe it was too much and I needed to stay strong for my own family.

I was told that they worried I was losing sight of the really amazing small things in my life, and that not everything needed to be so big.

I was told I needed to settle down and hunker down and take care of some very tangible things at home- likes the bills.

But what each one of them also said was that no matter what I decided they knew I was going to do the right thing. I needed to come up with the answer on my own and no matter what I decided, they would love me through it.

In many ways, I know I hoped everyone would steer me away from going, but never once did anyone make it their decision to make for me. In the end, my husband, my family and my best friends all said the very same thing,

“Do what your heart tells you…”

So tonight, I sat quietly and I asked myself what I wanted to do- and it dawned on me. I want to be humble and I want to be happy. I want to think more with my heart and less with my head. I don’t always want to do the things I think I should, to have things I think I need. I want to do things I feel are right and loving and compassionate where ever that takes me.

So there was my answer.

I AM GOING TO INDIA IN 5 WEEKS.

Would I regret or be angry at myself for not going? Probably not.

And you might be reading this and think I could likely find the profound experience I am seeking in India right here at home if I tried. You might be right and you get to have your own opinion.

But that is the point isn’t it. We all have to find our own way.

and obviously I haven’t or at least not yet.

So maybe I do need to go to India, and be completely defenseless and outside of myself and totally uncomfortable and alone to find myself. To find acceptance and peace and whatever the hell else it is I am looking for.

Maybe I just need to trust- that the universe is like my freaking genie and it saying “Your wish is my command”

Or maybe I just need to go to India and come back, get a job, get over myself, just chill the F out and accept that cancer is an asshole but no matter what we as a family are always going to be OK. I am going to be OK…. and that struggle is basic and universal.

I don’t know- but what I do know is that now that I have committed.

So I am all in- and that means

I am going to INDIA IN 5 WEEKS!

It also means I need to raise some money to support going through this program with this foundation to participate.

I will pay what I can but the money raised through this campaign goes towards the program costs, accommodation, food and the facilitators, writing workshops, 6 months of ongoing support groups and community programs, all the places we volunteer, clothing and a few cultural experiences. Any money raised above my goal will help with grants and scholarships to send someone else on one of these adventures.

Part of raising the money is also about fully getting behind this idea, this foundation and it is about putting yourself out there and being vulnerable enough to ask for people to get behind you and support this cause.

Asking for your support scares the crap out of me.

I can ask for a lot of things, for others, no problem, but I feel guilty asking for anything for myself (which might be something I also need to work on in India)

So- with that said I generously ask- Will you support me in doing this volunteer trip to India in 5 weeks time?

Will you get behind me and encourage me and donate to this foundation via my personal page and support this cause? Will you click the link and sending me whatever you money you can so that I can go out into the world and give back what ever it is I have to share?

If you can’t help financially, that is OK and I understand.

But will you still send me good thoughts and love and compassion and understanding as to why I am doing this? Will you try not to judge.

Will you share my links on your pages and re-post this blog and story and will you ask others to not only get behind and my family but this amazing foundation?

I know we could all use healing…each one of us for different reasons, but we are all the same and we all need each other.

The program means going to New Delhi for just over 2 weeks and my volunteer choices will include spending 2 weeks volunteering at either Mother Teresa’s home for the destitute and dying, an orphanage or a home for abandoned women. I will also have the opportunity to share my story and my families cancer story with other survivors at the program, as well as, families in India going through cancer. I will get to connect with myself and I am sure I will get to learn a lot of lessons both big and small which I hope will make me a better wife, a better mother, a better friend and caregiver.

If you choose too come along and follow this blog, I will also get to share this experience with you all. I will commit to writing to you from India and sharing not only how my participation affected me but also how your support has made a difference to the people I will meet in India and to myself and my entire family.

Thank you from the bottom of my heart.

Here is the link to my personal fundraising page if you’d like to donate and support me on this crazy adventure. I Thank you, Thank you, Thank you so much in advance and I promise to pay every dollar forward in the love and care I will give away to others.

https://www.volunteerforever.com/volunteer_profile/jennifer-montgomerylay

And here are some videos about The Fresh Chapter foundation and what it is all about.

Let your soul shine. Bali.

The only advice Jared and Logan gave me as I left the airport was to

A. Let the experience of Bali be all it was met to be. To be open and go with the flow. Not to control every thing, to just have fun.

And

B. To not tan my face. Apparently Logan doesn’t want her mom to look like a leather hand bag at the Ellen show.

So far I’ve done pretty good at one of the two.

Brody and I arrived in Bali safely and unscathed. Thanks to my favorite sister in law we had a driver pick us up at the airport and safely transport us to Ubud. I am beyond grateful. Arriving in a new country can feel sketchy and I quickly realized I could have easily been scammed. The prices quoted as I got off the plane were far higher than what I actually paid for my private driver-so thank you Danielle (and Mel and Grandpa George)

Ubud is about an hour and a half away from the Denpasar, where the airport is and the ride to our hotel was uneventful. We cruised through the city bustling with the usual busy traffic, past so many amazing furniture stores (how much is a container to ship home?) and down the winding and narrow roads lining the rice fields.

I was in awe.

So much about Bali is the same as the rest of Asia but at the same time so much is different than everything we have seen over the past month. My head darted from one side to the other trying to take in all the sights and as my excitement grew, so did my anxiousness. I almost couldn’t wait to arrive and get this adventure started. It was just as I was about to come out my seat, that we pulled up to a quaint little hotel on the corner of a busy street in Ubud.
Ubud is just as I hoped. It is truly an oasis and such a welcome serenity in the the craziness of Asia.
It is as you imagine, green, organic and full of people who are here to do some serious contemplation.
Ubud has an energy that words won’t do justice, so I won’t try. I guess it is because it not really supposed to be spoken about. It is supposed to be felt.

It is a little town that has a vibe that is not quite Sayulita but also not quite Saltspring Island. It is hippy pants and smarty pants. It is coconut water, and fine wine. It is cheap hostels and expensive retreats. It is chicken skewers being cooked on the street corner of a vegan restaurant.
Ubud is an anomaly- so it instantly it felt perfect, like I had arrived home.

Brody and I got to Indonesia on New Years Eve. It was the end of one great year and the start of the new calendar and we had the intention of whooping it up until the break of dawn.
We made it until 10 pm.
We wandered the streets, got lost, ate at a cool restaurant, looked in a few shops, watched some locals kids rip a couple firecrackers in a very unsafe manner and then we both identified that we were trying too hard to make an awesome night out of a night we just wanted to end, so we went home to bed.

As much as my hope was to share an epic story about New Year’s Eve in Bali, I have to be honest.

I slept through it all, which, to those of you who ‘get it’ -know- it was totally awesome.

Going home early was the perfect call.

Jared knew, bringing Brody to Bali was a good idea. He would reign me in. There would be no hangover for what I really came here to do. I wouldn’t miss out on all that Soulshine had to offer.
I woke up refreshed, limber, hydrated and ready to start the day at the Yoga Barn New Year’s retreat and Jam.

We arrived first thing in the morning and lined up for tickets. Apparently we got 2 of the last 11 (of course) available and since Brody miraculously turned 12 overnight (haha) he got to participate in the morning Yin class.

There were 145 mats in the room. Brody and I chose the two at the very back of the most beautiful studio you could ever imagine.
Yoga Barn is a facility that is built at the end of a busy street in Ubud, but the moment you walk in, you’d never know.
It is so peaceful and quiet.
There is a guest house, a quiet area, an detox facility, an amphitheater, an juice bar and a lobby/gift shop and towering above it all is the main yoga studio.

It is open air, with beautiful hardwood floors and vaulted ceilings. It is shaded and cool. Both the fans and the music are running softly in the background.

It is the perfect balance of beauty and tranquillity and it is breathtaking.

It sounds corny but the moment I stepped foot inside the facility. I knew I had ‘arrived’.

It was everything I hoped it would be. I day dreamed about this place on the plane ride over and pictures couldn’t do it justice. I was excited to soak it all up.

Check mark on the bucket list- enlightenment here I come!

Only it (enlightment) didn’t come.

Class started and as much as I loved it, it was clear that Brody did not. He twitched and rolled his eyes, he drank water and mouthed escape plans to me. I was worried about the rest of the day- he was trying to be a yogi- but he didn’t buy it.

Shit.

What was I thinking bringing an 11 (I mean 12) year old boy to a yoga retreat in Bali and expecting him to ‘get’ the path to enlightenment?

I mean isn’t the path to enlightenment really about being 11?
I tried to ignore him but the more I did, the more it was obvious we needed a break from the perfect yoga retreat.

Lunch was served, a vegetarians delight. Brody snubbed the offering and decided he wanted chicken.
Of course.
So off we trucked in the heat of the day to a local cafe. Me irritated, him a bit on edge of a total meltdown, hippy bandana and yoga pants still totally in place.

We looked the part but we were so far from being mindful, present and connected.

Brody was trying his best. He really was, but this was new and awkward and weird. We needed a moment to regroup and ask ourselves what we both hoped to take away from the day because it was clear that neither of us were going to have a good experience.

First lesson of the day learned.

Do more of this in real life.

Step back when needed.

It was time for a cold beer, green juice just wasn’t going to cut it. I needed something stronger to ease my frustration and since the universe was in charge, we chose a restaurant just down the street from the yoga barn that only sold large ones.

Perfect.

Brody and I ate, and we talked about the day and the expectations and in the end we decided to head back to the afternoon class with a different approach. If Brody didn’t want to participate, he didn’t have to and I promised to not let it affect my experience. He could take off the head band, pull out his iPad and if he didn’t want to do yoga, he didn’t have to. He had You tube.
We high fived, shook hands, hugged and went back with a new plan.

Then without expectations lingering, a shift happened.

I grabbed a mat and Brody sat on a bench watching. Before long I looked over and he was on the other side of the room in a full downward dog.

The energy was very different than the Yin class and Brody was soaking it all up. All on his own, no pressure from me- he chose to do back bends with the best of ’em.

The teacher was amazing and upbeat and it was clear that all 145 students loved him. The vibe was powerful and the music was pumping.

Les, an ex-alcoholic, ex-crystal meth addict, ex-porn star turned yoga teacher turned a room full of strangers into a room full of family.
There was a lot of touching, hugging, saying thank you and I love you’s and for me there was a shit load of crying.

Like a baby.
It was a beautiful thing.

My legs throbbed, my arms twitched and my heart ached.
But it was so completely different than my usual heart ache, this heartache felt like everything being released. It felt like letting go.

“Booya! Ubud success. Eat, pray, Love that shit.” I was screaming to myself on the inside.

The girl beside me seemed concerned. She just told me to breathe. We were in frog pose, and she didn’t seem too worried by my tears. I guess people must often cry in that posture. Ouch!

The best part was when the class came when it was over. Brody skipped back with a huge smile on his face, apparently NOW he loves Yoga. The day was, fun, rewarding and inspiring.

Yes!!! Check Mark, Gold Star, Success!!
We were ready to rock.

Micheal Franti started his set after a beautiful meditation about intention and goal setting for the new year. When he walked out on stage, there was not whole lot of hoopla as he started strumming his guitar. It kind of felt like an exclusive party almost like being invited into a living room full of his friends.
Everyone was happy, relaxed, yoga-fied, sober and peaceful.
Brody beamed with energy as he inched his way closer and closer to the front of the stage. Every time I would look at him, his excitement, amazement and awe would continue to grow.

“Mom, I LOVE this” he said as he danced. “This is amazing!!!”
And it was, but I am not sure what was more amazing, the music, the people or just watching my bare foot boy twirling around on the grass with no inhibitions singing at the top of his lungs.

My lips smiled. My heart smiled and my eyes cried.
This trip was a last minute decision. It was over the top to not go home and instead come here to do this. I was spending so much money and a part of me felt guilty and selfish for extending an already amazing holiday.

But in that moment, the guilt was gone. I could never put a price on this. I had done the right thing.

Being here with Brody, totally happy and peaceful and well stretched for this awesome dance session had solidified I made the right decision. I didn’t need the universe to show me anything else for me to know me I was exactly where we were supposed to be.

Here.

But then, just as I was having this very thought, incase there was any doubt, the universe decided to shine down on us a little more.

I caught glimpses of Michael Franti looking at Brody, and I then I saw him stare. Brody was mostly oblivious and just kept dancing, singing and smiling, he was so in his element.

“Kid…” Michael pointed at Brody “Get the hell up here”
Brody turned to me puzzled- “Me???”

I pushed him…..
“GO!!!”
And he did. He went up on stage in all his glory and he belted out The Sound of Sunshine like he was the rock star.

I cried. Harder.
This is why I came here. This is why I knew I had to come. It was Brody’s time to have the spot light after all the years of living in the shadow of his sister’s illlness. After all the years of patiently waiting and hearing that it wasn’t about him, it finally was.

He was front and center and he was leading the crowd singing in complete harmony and rocking out. I was so incredibly and completely grateful to see it first hand.

I am also so excited to share it with you all, only I was so excited to see him on stage that I forgot to hit record on the GoPro.

Shit.

A moment had happened that was so kick ass and pivotal and life altering and I had missed the opportunity to capture it.

Shit.
A few blurry pictures and an awesome memory are all I have have to prove how hard Brody rocked out. I have asked for the video to be shared but if it isn’t you’ll just have to trust me, IT WAS SO AWESOME.

Anyhow, and at the end of the night when there was a small opportunity to say goodnight and thank you for the experience Brody and I approached Michael

We told our story and shared our adventure that led us to Bali to participate in Soulshine and see him play and the next thing we knew a plan was in place for us to hang out some more with him.

Holy shitballs! It could get better.

We arrived at Soulshine (Micheal Franti’s resort and yoga retreat) at 10 am on Sunday morning. As we walked up the road to the villa I could tell both Brody and I were nervous.
“Lets try not to be weirdo’s” I said to Brody.
“I know, Mom, but he’s famous and we are just normal and it feels super awkward to go to his house. I have never met a celebrity before….”

I paused at the gateway.

Second lesson of this amazing adventure.

“Brody, you are also a rock star and you always have been. Micheal Franti is inspiring because he does what he loves and he’s good at it, so we think he is cool and almost better than us, but you know what, he is not. He is just a normal guy, who obviously doesn’t think he is a celebrity because if he did he wouldn’t have invited us. Brody- he thinks you are totally rad…. OWN it”

He looked at me, rolled his eyes and winked “Ok, mom- thanks for the pep talk, was that more for me or more for yourself?”

Good point, and a total Brody’ism’
I didn’t know, but either way we both high fived and walked towards the gate. “Let’s do this!”

I should actually back up and say, Brody walked (actually skipped) through the gate and I sort of waddled behind him. After a full day of yoga and another full day of riding mountain bikes in the rice fields my path to enlightment had left me with a rather sore ass.

Ouch -but as I looked around at my surroundings, I quickly forgot my pain.

Soulshine retreat is gorgeous.

Like out of this planet, perfect, as you would dream gorgeous. As you walk in to the place the stones are precisely laid to welcome you with words like ‘be happy’ and ‘let your soul shine’.

The long pathway to the lobby is beside a creek where locals are bathing naked with their children. Music is whistling in the background and it is shaded and cool.

We were greeted by an older Balinese man who seemed to be expecting us.
“Here to see Michael?” He said to us just before he hugged us unexpectedly.

We nodded in appreciation and he ushered us up to the pool deck where Michael and his friend Scott were waiting for us.

I took a deep breathe. Holy shitballs, this is happening! Don’t be a weirdo.

We were hugged and welcomed. Michael took us upstairs and introduced to the yoga class that was in session and they all welcomed us like old friends who seemed to be happy we were there. Then we went downstairs and were offered a beautiful meal by the pool over looking the rice fields. About 5 women were cooking in the kitchen and everything was fresh.

Scott, Michaels friend sat across from me. He is a recent cancer survivor so he and I had an immediate connection and began to chat. Scott too has had numerous treatments, and is sort of at a cross roads in the cancer journey. I could have spent hours talking to him. He is an interesting guy who spent years working for Lance Armstrong, living through his cancer journey and success’ and disappointments only to have his own battle to face. Ironic and strange. I think we both kind of ‘got’ how you’d never think this could happen to you and how when you are faced with it you are also faced with the big fat question of “now what?”

Life after cancer has so many question marks no matter who you are.

So, as Scott and I talked about the heavy stuff, Micheal and Brody were all about fun.
They went out to the rice fields and MF taught Brody how to cut rice, with a very sharp knife apparently. Brody posed the question “Do you ever wonder who would have thought to eat this plant? To do all this work to get one little grain of food?”

Apparently MF replied “All the time..” and they were instantly connected.

They were gone for about 1/2 hour and when they came back they were covered in sweat and jumped in the pool together. They swam, and laughed and we ate and visited around the table with the rest of the yogi’s on the retreat.
Then Michael pulled out his guitar and he and Brody sang a quieter more personal version of Sound of Sunshine.

Again- I cried.

It was a perfect day and an incredible experience. Brody beamed as we rode home on the back of some local mopeds.

Michael is a great guy. He really is, but what struck me most about him was his lack of knowing what a great guy he is.

I am sure many people tell him but he doesn’t let it faze him.
He is the kind of person that gets the opportunity to lift so many people up, has a huge message to share with the world, but doesn’t have a big ego.

Inspiring.

He is not a preacher. He is not the kind of person that gives you the feeling he thinks he knows more than you do (even though he obviously does).

He is as interested and engaged with who is in front of him as much as the people who are in front of him are engaged in him.

And in so many ways he made me think of my Loggie.
Just like her, he is just of living the life he has been given (which has been full of his own challenges) in the best way possible. Through the ups and the downs, his soul truly shines. It comes out in his music but it also comes out in his generous and gracious personality.

I also like that he does’t seem to take any of his blessings for granted. He’s all about appreciation, giving back, and using his amazing platform to create more of what he wants and what is good for others.

We walked into Soulshine nervous and awkward and we walked away from Soulshine different and better. Immediately, I could tell Brody had changed.

In these few days in Bali we both have changed and it is so good.

Since our day with MF , we have continued to chat about what was said at the yoga retreat and what advice Michael shared with us. We have talked about how we feel and the incredible string of coincidences and synchronicity that led us to this experience and how these are the moments when you know life is working in perfect harmony.

We are still in awe and although I am babbling here, there are really no words for what happened.

Just a knowing that from this point forward anything is possible.

Life is brutal at times but it is also super rad and it is our responsibility to make the good in life happen for ourself and others instead of letting the circumstances of the shitty parts control us.

I hope in 2016 you let your Soul Shine.

Thank you Michael Frantic for showing us how.

Life- All over the map

A family journey through childhood cancer and around the world