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.

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.

Never give up

We will always miss you Spence.

May 21, 2008 9:26pm

May 20th
Cancer means some days are good, and some days are bad. Today was one of the worst days. Today we found out that we lost a dear friend.
Spencer Dolling was such an amazing and super cool kid.

Spencer was Logan’s first real ‘crush’

These two spent hours together in the clinic and on the ward at the hospital getting treatment together but that is not the reason they became friends. They connected simply because they just liked each other, well, and because they both were fiercely competitive skip-bo players.
Spence was strong and brave and all the things you say about a kid with cancer, but he was also just a fun normal boy. Everyone at the hospital loved him and his family. They had a contagious zest for life that so many admired. If you can imagine they made coming to the hospital to get chemotherapy fun.
Spence had neuroblastoma which is a terribly painful type of cancer but spencer never became his cancer. Instead he lived, though the pain, through the treatment, and in his own words “except for cancer, I have a pretty great life”
He is the one who inspired Logan to be strong, and live to be more than her cancer. So many times when Logan would see Spenc she would comment on how he had been doing treatment for 6 years and how she’d only been doing it for 3 years so she shouldn’t complain because Spencer didn’t.

A few weeks ago when he was admitted and we weren’t we went to see him. Radiation has meant that we haven’t had our regular visits with the Dolling’s and I could tell Logan was missing Spencer.
When we got to the room I noticed that Logan wasn’t talking much with Spencer and Spenc was feeling pretty darn glum. So when we left the room I asked Logan if she was nervous because Spencer was so sick now.

She casually nodded in a knowing way “he didn’t need me to talk mom, he just needed to know I was there”

That is how they have always been with each other. Sometimes they’d spend the whole afternoon together and barely even speak except for a few snickers over SKIP-BO but not in an awkward pre teen way, more so in an ‘I’m here for you, you don’t have to be anything’ kind of way. True friendship

It was more than just a childhood crush, there was wisdom in the silence these two shared. They knew exactly how to accept their circumstances and be comfortable around each other.

One time when I was joking with Logan about marrying Spencer and having a crush on him, she laughed “well at least we have seen each other at our worst”

I laughed. GOOD POINT. You most definitely have, and still loved.

Spencer was a true reflection of his family, who I have to say are the most amazing people ever. I actually am a bit of a Dolling groupie to be honest. In fact, had I never me the Dolling’s I would have probably would have never began to blog, or stop feeling sorry for myself and our situation for that matter.

This is a family that stole every good moment they could. They made the very best of every day, no matter what they day brought them. They made Hawaiian drink on the ward on the first sunny day of year. Cooked pumpkin pies on Thanksgiving, sailed away into the sunset every chance they could and assured us that it was alright to take all of our holidays without ever feeling guilty.

Basically they showed us how to live and create happiness in a very difficult situation and for that I am forever grateful.

I think they have the proper life perspective nailed. I know that we are better people and a better family for knowing them and I am so proud that Logan and Spencer were friends.

Logan is heartbroken. Today has been hard on her. We had a lot of questions today. Not just from her but Brody too. God love him, he is learning hard lessons in life far too early and he doesn’t quite understand it all but Loggie summed up our sadness by asking “would you ever give up being sad about losing Spencer if it meant that you never got to know him or his family at all?”

Of course we all agreed not for one single second.

Sadness comes when you love someone. It is impossible not to feel heartbroken when you lose someone you care about and you know those who were closest to him are in pain. We love the Dolling’s, We are so inspired by them and we feel like they have almost become like our family over this last 3 years. Our hospital family.
As Logan has explained “they just need to know we are there”

My only hope today is that they do.

It has been a hard day. It is close to home, considering out last few visits to the hospital, but it has also been a wake up call.
Life is precious and whether you live to be 12 or you live to be 100 live is short. So I am going to make Shirley temples (ok let’s be honest they will be spiked) on sunny days and be more spontaneous. We will honor spence by living like the Dollings showed us, by having fun and never giving up.

So get ready for your first umbrella drink in honor of the Dolling’s at our BBQ.

Loggie decided today 2 things. First off she wants to put a picture of Spencer on our T-shirts for the childrun to honor him. We will run for you Spence!

Next off she wants to plant a tree that flowers in our front yard and get a plaque. It will be for both Spence and Makoda and every time it flowers it will remind us of them. She wants ladybug garden ornaments around it.

So that is what we will do.

It is with Love I send this to you tonight, Hold this family in your prayers and send love to Loggie tonight too as she struggles with her broken heart.

First day back at school

May 20, 2008 8:59pm

It is the start of another week off treatment!!! It still seems weird to not have to get up and head out every morning on the 111 km round trip to downtown but we are loving it and so is my poor car. It needs a fan belt, a tune up and probably just a rest.

The weekend turned out to be GREAT despite our cancelled plans. We went out on the ocean, toured up to Whistler for the day with the girls, ate tons of good food, and got to catch up with alot of people we hadn’t seen in a long time.

It was relaxing and fun! Loggie did fairly well all weekend. She was so tired last night that she ended up in bed at 6:30 but I think it was overload of FUN exhaustion and not cancer tired, so that makes my heart full.

She started the week off by going to school once again. She was so happy to be able to go. Traffic was a bit busy and she was a tad late. I blamed it on the rain, thunder and lightening and not the fact that we are just totally out of the routine of getting to school on time.

I am going to spend the week planning a party. I feel like it is time to celebrate. We need a party. We all actually can’t wait and are very excited that so many of you have joined our team and are coming out to support us CRAZY FUNKY ANGELS!!!!

Should be a good and busy weekend! I’d better get to work

Better days begin with not being pissed on

May 16, 2008 11:04pm

Today is a better day. I Wasn’t woken up because I was urinated on. Instead I woke up completely sideways across my empty king sized bed, mouth open, content from a great dream. Oh the beauty of a sleeping pill, glass of wine and a crying jag.

Jared said that when he came to bed last night around midnight it was clear that I needed the bed to myself. Sleep doesn’t always come easily for me and he wasn’t letting the snoring go to waste.

He slept on the couch.

It was exactly what I needed. I woke up today to a much better day.
Refreshed. I am able to let yesterday go and move forward. I don’t have a choice. Stay strong is the only option. Cancer can wreck our day but it is not going to wreck our life.
We packed our bags and set out for a weekend in the Okanagan. Got the call around Hope that my dad has a sore throat. So we turned around and came home. We can’t risk it for Loggie, 2 weeks post radiation and 2 weeks until Chemo and no counts.

We have a lot to get done around the house but chores on a long weekend sucks!!!
I made Jared promise that the whole weekend wouldn’t be work and he agreed.
We are venturing out on the boat for the first time this year tomorrow, and looking forward to it. There is nothing more peaceful than being out on the water. Good compromise.

I wanted to thank you all for the nice messages yesterday. Yes times get tough sometimes.

I want you all to know that I don’t blog because I want sympathy but more so because I just have no where else to put it. There is this whole ‘other’ side of cancer, and I think it needs to be shared. It is just too hard to keep bottled up inside. So thank you for listening and sticking with us despite the sad words. I can imagine it gets kind of dreary to hear day after day all of our trials (the time right now is 11:11 by the way) but I also hope that it gives you some happiness to share our victories. This blog is like purging. When I write, I can let it go. The way I see it, it is either blogging or rehab. Blogging seems like the healthier option.

The truth is cancer is sad and hard and some times we struggle to keep our heads above water, but mostly we are OK. We are not losing our minds, we are making it though. Truly we are. We may be forced to take one step backwards but we always find a way to move forward.
It is because of Logan. Loggie is strong, stronger than we all are most times and she keeps us on track. I hate cancer…I hate cancer….I hate cancer.

That is all, it is just that sometimes I hate cancer so much and I just want it to go away so bad that I just want to absolutely freak out and lose my mind, tear out my own hair (oh except I don’t have any) and chew off my own arm (ok maybe not but you get my point).
Being committed to anything for 3 years day in and day out is very hard. Especially something difficult and negative and ugly like cancer.

I thought about how much endurance cancer takes today as I drove home from our cancelled weekend. I realized in my own disappointment that most things in our life are uncertain always rearranged or cancelled and that we all continue on because we are not committed to cancer we are committed to Logan and we are going to get through this.

It is just never the way we think we are. That is all.

Missing out on things and the worry and the sadness is all worth it, because the pay off is that she is still here. Period.
Memories of the good will always be the ones I always remember not the fact that I didn’t get to go to Princeton on May long weekend 2008. One day I bet I won’t even remember the bad days cancer gave us. One day when we aren’t drowning in all the chaos, all we will remember is the good.
I wish I could do it all, but right now I can’t. I miss everything about a regular normal life so much. I miss everyone so much but this just is what it is at this point.

So with all plans cancelled it means we are free. To make our own plans, and our own fun for the weekend. Water park today, planting flowers, painting, dinner at the Vanderguliks, boating, eating crab with the Davidsons…cleaning up our yard for you all to come celebrate the Childrun BBQ.

It is all good.
We didn’t get pissed on today and that made it a better day.
Some times all you can do is own your wins.

Happy May long weekend and I will keep you all posted

Lots of Love
Jen

Home

May 11, 2008 7:26pm

Home from Maui (sigh) but still dreaming of it. One day I would like to live there, I know I said that I would like to live in the Bahama’s (its the problem with traveling) but Maui is a place I could stay for a very long time.

Apparently the island has healing powers. I believe it does. We all did a lot of healing while we were gone.

It would do injustice to try and put into words how amazing our trip was. Reid, Diane and Chris treated us just like belonged on their vacations. We fit. There were never any awkward moments, or feeling like you were in any bodies way. The condo was a perfect amount of space, it was comfortable and relaxing.

Logan did become the sequence champion of the world, if not for any other reason, than just because she played the most games. We came home and immediately bought the game.

Brody found a new best friend, in Chris…or should I call him DUDE?

We finished off the trip with a memory tattoo. Me a ladybug, Reid a shark (ha ha loan shark) and Chris a Canadian/American tattoo he had designed years ago but never got.

What a great way to remember such a great trip.

Both Logan and I are home now, and I don’t quite know how my boys survived for days in this house. NO FOOD.

I went grocery shopping, did laundry. no matter how long your are away the old routine comes back very quickly.

We took Loggie to the hospital today to be seen by an oncologist. She needs more medications and I also wanted to have them take a look at her. Since we have been away she has had more of her “I can’t feel my leg” episodes and a few of the “I can’t see” ones too.

We got no news on what they thought was wrong, they just renewed her prescriptions, and told us to continue to watch her carefully. We got an appointment for her in to see Dr. Hukin next week.(Dr. Hukin was away this week so we saw, Dr.Bond)

Both Logan and I had meetings with the ‘feelings doctor’ Dr. Kuttner as well today,(psychologist) as The discussion of enrolling her in the program at Canuck place came up again and I haven’t been able to stop thinking about it ever since.

Canuck place is a hopsice.

It is suggested when you move from the status of possible to cure to no possibility of cure. Pallative.

They say you never give up hope, and I don’t think you do, but moving to Canuck Place feels a litle like chipping away at that hope. We don’t have much left, and we need to hang on to what we’ve got.I hear amazing things from families who have been to Canuck place, I just don’t think we are ready.

Dr. Kuttner suggested that in speaking with our oncology team we may benefit from the programs Canuck place has to offer. She said we don’t have to think about it as a hospice but more so as another resource for support during our upcoming treatments. She wants us to take a tour and meet with the pain management team.

Dr. Kutter has been our therapist since shortly after Logan was diagnosed. She spent a number of years working/and still does work at Children’s hospital. She is apparently a specialist in the area of pain management and has been in contact with all the doctors from our ‘team’ numerous times during our 3 year stint. So we should listen to her she’s been around a long time and knows the drill.

This round of treatment is our last chance. I know her heart is in a good place, but I also have to trust that may heart is in a good place too. She may know the drill, but she’s not living it.

She reminded us that the chemotherapy we are starting in June is only a trial. There are few results to prove it will work and the symptoms Logan is already having are worry some. Radiation may or may not have worked. Too soon to tell. She is trying to prepare us to at least contemplate ‘what if’s.’ and I think her heart is in the right place. She said if nothing else, Canuck Place would give us a place to stay if ever we wanted to be close to the hospital and if Logan wasn’t well enough to make the round drives to and from Maple Ridge.

I get it. Easier, more helpful. My answer- still no.

I believe Logan will be one of the miracles that beats this disease and going to Canuck Place feels a bit like I have some doubt. I can’t let doubt in at this point, a crack in the dam and the whole place is going down.

I wonder if denial is what gives you the strength to hold on, and keep going? If it is than I guess this where I need to stay for now. Denial it is.

Logan knows what it means. Her friends have gone to Canuck house and sadly never come back. She asked today if we were going to take her there. I asked her if she wanted to go, she didn’t hesitate. NO.

So that is our final answer……for now. Canuck Place is just too much.

Dr. Kuttner was very understanding of our choice. I asked her not to mention Canuck place any more for the time being. I thanked her for sharing our options.

She asked us to remain open to discussions in future. Very ‘feelings doctor’ of her. Remain open.

It is hard enough. Logan’s symptoms seem to be getting worse. Right now all I am doing is trying so hard not to lose my shit.

I can’t distinguish if my gut feeling is that it could be tumor, or if it is just the side effects of radiation. I have never been so out of touch with my ‘gut’ before.

I think this is what it feels like to be at war. Your gut doesn’t matter.

You focus on the task, the strategy. You see the horrific sights but you are in the battle. You have to remain disciplined- there is a schedule of medication and treatment. You have taken the oath and you commit to winning at all cost, it is all in the name of hope and freedom.

The freedom is from cancer.

The unfair part is that this war had a draft. There was no choice whether or not you want to fight, you didn’t sign up for this and there is no choice but to win.

Hawaii was a sabbatical. It was just enough time to forget about our war at home, but not enough time for it to be over. It was good to run away, but unfortunately, you always have to come back and face whatever war is waiting for you.

Here is one final Maui story before I sign off.

On the last morning on the I went down to the beach to sit quietly by myself. My intention had been to do it every morning but sleeping in became such an indulgence I found hard to get up. I am not a morning person.

But on the last day I knew I needed to do it. To reflect and just be quiet, take it all in contemplate our nest step.

I got up, 7:oo sauntered down to beach before coffee and plumped my but on the sand.The waves crashed, the wind blew, it was warm and no one was around. I was able to breathe slowly and relax.

I am not sure if it is meditation,(god I would love to learn how to turn off my mind completely) but I felt a bit like I was floating.

I sat there on the beach and was quiet all by myself and inside myself (that never happens) for about 1/2 an hour. Everything felt OK.

When I opened my eyes, I was perplexed by how I could possibly feel the so peaceful in the ‘real world’ and I wondered if I could find this peace back home.

I left the beach knowing I wanted to try to figure it out.

And now I am back home. It seems almost impossible, the world around me again seems so harsh. I have got to find a way to escape it all and if I can’t just jump on a plane I need to figure out how to get away in my mind.

I guess that is the point, to find peace, ‘god’ or whatever it is you take comfort in, in the worst of times and not just the best of times.

It just seems so much easier to do in paradise.

Home means time to plan a party.

May 10, 2008 7:02pm

So as most of you already know Logan was diagnosed 3 years ago on June 3rd. That also happens to be the Children’s Hospital Miracle weekend. Miracle weekend- if you have to diagnosed, is the best weekend to have it happen.

It is a weekend of celebration for the hospital and we participate by joining in the Annual Childrun. This will be our 3rd year.
We are inviting you all to run with us. Our hopes are to have as many of you as possible join us. We have registered our team at childrun.com (you can find it by googling childrun 2008) Our team name is of course “Logan is our angel” and this year we thought it would be fun to have a THEME TEAM.

We are planning a pre-run BBQ at our house on May 31st to decorate our costumes together and get together and lets be honest, drink wine.

Our theme, is angels! Fun angels. Logan’s angels!

So if you can join the fun, join the team!!!

We are looking forward to an amazing weekend. Logan starts chemo the following week so this will kind of be a send off and a party before she begins this next phase of treatment!

I know it is short notice, but as you all know we have been awfully busy beach bumming in Maui and as such we were shirking all responsibilities. Now, we are back to reality and doing what we do best, scrambling.

If you register by May 12th, you t-shirt will have our team name on it, so if that is important to you- you have 3 days to register.

We have lots of room at our house and a travel trailer so if you don’t live in the lower mainland like to come and join the team you have a place to stay.

See you soon!

Bye Bye Maui

May 8, 2008 1:27am

Aloha!

Tomorrow is our final day in paradise.

Our flight departs at 10:50pm so we don’t arrive until Thursday morning. I am pretending that means we have two days left. The flight isn’t too long but it is 3 hours ahead at home so it will be a weird day.

Logan had a great holiday. It has not been incident free but we’ve been more relaxed handling the symptoms (good to know- mai tai’s help). She has complained a few times of the “I can’t feel my legs” symptoms, which is equally as freaky in Hawaii as it is in BC but the spells passed quickly and she hasn’t had any unbearable headaches since she started the 20,000 new medications we brought along. (Obvious exaggeration)

Eating has been great especially in the morning (nausea is present) but after a hit of THC she usually gets the munchies and by bedtime she is snacking away. We have used the feeding tube when we felt we needed (both the pump and bolus). We have tried not to pressure her with food or stress about it. She has better than expected and that is good enough.

We are sad to go home tomorrow which seems not quite right seeing as we should be beaming with gratitude for this vacation and its extension- but we know what waits for us when we return and it is daunting.

This trip has been an amazing gift from Reid and Diane but part of me is leaving wondering if we will ever get the chance to do this again. (Reid suggests a 90 day plan- so I’d better get planning our next adventure)

I don’t let the thought of ‘what if’ cross my mind often, but when they come, it is complete fear that takes over my brain. I can’t bare the thought of losing my child.

Chemo starts in couple more weeks for the next entire year, it will be hard to imagine, that life actually exists so beautifully here in Hawaii.

Life back home is only a 5 hour flight , but it is a harsh reality from this one. I may have to ease back in- slowly- anyone free for Blue Hawaiin’s? My place 9:30 am daily…

It makes me sad that we have to go back to what is waiting and although we haven’t talked about it- I know Loggie is sad too. Silently, I can see her taking in deep breathes, filling her lungs and her mind with visions of this beautiful place mentally preparing herself for another stint of treatment.

I think treatment is hard, then I look at her, she has to bare not only the emotional toll but the physical one.

She joined an online group today for kids with cancer and she asked if when she gets home if she can participate in more of the activities for oncology kids. She said it makes her feel better to be with other kids who are like her. I think it is a good plan although I worry about her too. There is a lot of sadness in the cancer world. I worry if she is ready for that. But her desire for this made me realize that she needs different support than I am giving her. Even though I have been by her side for every moment of this journey, I truly don’t know what it is like for her. I think I know, because I am her mom, but really I have no idea. Only other kids who are living this same journey know what it is like for her.

So that is it. We return home tomorrow from this unbelievable trip and jump back into the world of cancer. We have no choice.

But one last thing before we go- Reid, Chris and I are off to a tattoo shop tomorrow to get “inked” together in honor of this trip.

I chose a ladybug (for obvious reasons) Reid a shark (after all that is what he is) and Chris a maple leaf.

Logan wanted one too but I have to draw the line at some point. We promised her she could get a real one when she was older and returned to Maui and in the meantime we got her a henna tattoo of a ladybug instead.

Thanks to all of you for the good energy you have sent us during our stay here in Maui. We have felt great every single day we were here. We have slept (YES!!!!) dreamed incredible dreams, laughed, played, swam, drank and just had a ton of fun.

Not for one moment have any of us taken for granted how lucky we are to have had this opportunity, nor will we ever, in fact it has inspired us to plan our next adventure, to have something on the calendar to look forward to and to escape to. Who knows what or when it will be, but I’m sure there will be details coming soon…..

Escape life

view from our deck
Logan doing a feed through the tube
Logan was the captain
Best day ever
Lunch after the aquarium
Visit the Maui Ocean center- amazing

May 3, 2008 11:46pm

Aloha!!! So if it wasn’t for the date at the top of this page I would have no idea what day it is..

Isn’t Paradise great?

Diane reminded me “happiness is the absence of worry”

I have come to really cherish that phrase. Life is about being happy in the few moments that are free of the worry or the burden, for all of us.

Hawaii has been fabulous, lazy days, great laughs, sunscreen, and no guilt about the Corona that I had at 8:30 this morning to wash down the burger I had for breakfast- true story.

We went on a snorkeling tour today. Molokai is a beautiful island and a giant crater just off the coast of Maui. It was created from one of the many volcanoes that have erupted and created this entire piece of heaven. All of the islands around here are gorgeous and every thing about today was beautiful.

I am finding myself contemplating everything, and in reflecting on the creation of the Hawaiian islands I find inspiration. A place so lush and beautiful and peaceful has evolved from something so harsh and destructive as volcanic fire and lava. It is kind of like our cancer journe, beautiful things despite the ugly monster.

Logan was brave today and snorkeled with the rest of us. She gazed at the fish with such awe and excitement, her little feeding tube tucked up into the mask.

Tomorrow, I am off to the spa for a massage on the beach ( surprise from Jared) and I can’t wait to just relax and unwind completely alone before our planned trip home.

ONLY LOGAN AND I AREN’T COMING HOME- YET!!

Loggie isn’t ready. Neither am I to be honest. Home seems like too much reality at this point and we aren’t ready to face what is waiting for us when we return. Logan is doing well and I feel good here, so we decided to stay another week. I mentioned the idea to Jared, and he insisted on it. I was completely willing to keep both kids here but Jared has decided that Logan is demanding enough so he is going to take Brody home with him. My plan was to stay at a hotel and not over stay my welcome here with the Adkins but they won’t have it.

I mentioned my idea of staying longer

“Why wouldn’t you?” they said “you are already here, and Loggie is doing great. What do you have to go home to?”

That question got me…”What do I have to go home to?”

Nothing.

For the first time in three year, we don’t have any schedule, no doctors appointments, no chemotherapy, no radiation, no physio, nothing. We have nothing holding us back.

Amazing.

So we decided to stay another week.

Jared and Brody will be home tomorrow as planned but not Loggie and I- we are beach bumming it a bit longer.

I am going to admit, I kind of feel selfish. Poor Jared to having to go home to an empty house with Brody all by himself and deal with working and getting B to and from school, grocery shopping and everything else. But he insisted and I really appreciate it.

“I just really want you and Logan to relax together” he said “just a couple of days of no worry. Not about watching Brody at the pool, or temper tantrums or having to feed anyone at a certain time. Just some down time.”

He continued ” You and Logan have been through so much back this year. This is an amazing opportunity, when will you get the chance again?”

I couldn’t answer. Logan and I have been through so much? So has he, but that is Jared, so completely selfless-

Just when we thought it couldn’t get any better, we learned it doesn’t have to end yet.

So the plan is we fly home next week. As luck would have it we have just enough medication to get us through until the day after we arrive home.

Brody doesn’t love the idea of going home but I think he is used to his sister and I being away, and I know he will be just fine. Logan and I get to spend a lot of one on one time together but not a lot of that is carefree and fun. I plan to make these days count.

Plus, she refuses to leave this island until she becomes the sequence champion of the whole world. Reid and Diane have created a monster.
I read an article that said Maui has very spiritual and healing qualities. One of the treatments offered on the island is called Huna Reiki.

This ancient tradition believes that the key to living a fulfilled life lies in the awakening and integration of your subconscious or lower self, the conscious or middle self, and the spiritual or higher self.

It offers us a profoundly beautiful philosophy of life centered in love with the vision of humankind, nature, and the divine as harmonious parts of a cosmic community.

Huna is much more than a philosophy, it is a way of life that gives us a set of practices that are simple yet, profoundly transformational. This attunement will connect with the essence of this energy, the work is up to you.

Historically the Kahuna was the spiritual master who was the keeper of the Huna knowledge and tradition. When the English settled in the Hawaiian islands the practice of Huna was banned and the Kahuna’s went into hiding. Today these practices are emerging once again to help us heal.

No wonder Loggie loves it here, she loves receiving reiki and it sounds like it is way of life here on this island. I wish I had read about this workshop prior to coming and could have participated in it.

Another reason to come back.
Happiness is the absence of worry. We have no worry here.

Despite what you have been told, You can run away from your problems. Maybe not forever but when you can, you should.

Vacation gives you a chance to breath- and travel allows us to escape life.

My goal- travel as much as possible- escape life, escape cancer.

A new month in Maui

May 1, 2008 1:01pm

ALOHA
Hooray, Hooray its the 1st of May!

And we are still in paradise, (and never want to leave here)

Once again I sit here in complete contentment listening to the waves crash on the shoreline that is about 6 meters from the balcony where we sit.

This place is stunning…beautiful hardwood floors, huge windows that open out to the warm air, a gourmet kitchen…marble and granite…views that would knock your socks off…it is gorgeous!

And to top it off we are here with the most amazing people ever…We are having a great time.

Logan is having her ups and downs but overall she is eating MUCH better. She is good at knowing her own pace. She eats slow and takes breaks.

She is can only handle staying in the sun for a short time and then comes in to seek shade, well that and so her and Auntie Diane can kick Reid and Jared’s ass in sequence. Sequence is a great game and it is is going to be a new addiction in our house and the clinic. It has provided hours of entertainment on this trip.

Logan went boogie boarding with me yesterday. Who knows what her counts are- who cares.

The swells were huge and after she got over the worry of sharks eating her we headed out.

It was a blast! We laughed so hard, and we got pummeled by so many waves that both of us had so much sand in our WOOHOO’s. We had to strip out of our bathing suits off in the ocean and rinse them out. It was fun. So much fun. Fun like we haven’t had in a very long time and although I knew it probably wasn’t the smartest thing (one week post radiation- low platelets) I didn’t let the worry consume because the fun was worth any risk that we had to take.

Belly laughter- the kind of can’t catch your breathe laughter doesn’t happen much around our house anymore but yesterday Loggie and I laughed so hard that our stomachs hurt. She was so weak from laughing that as the waves continued to crash her into the sand and she couldn’t stand up she just laughed even more.

Seeing her happy, alive and here, was worth every worry- every crappy radiation treatment, all the sleepless nights, surgery and medication it took to get here.

Brody has also tried to boogie board, and loves the ocean. He is content, not ‘bratty’ as we call him at home and relaxed.

Jared and Reid have taken to afternoon football on the beach- cold coronas close by.

Auntie Diane is keeping us all well fed (love her) by puttering in the kitchen and making trips to the local fresh market to get ingredients for all her amazing meals. Me, I loving laying in the sun reading my book. I wish these days would never end.

We are off to the Aquarium in a few hours and then on to pick up Chris at the airport. Logan chose the aquarium as the one thing she wanted to do on this trip and she is thrilled to be going.

It will be another great day in paradise.

I introduced the crew to mojitos yesterday…(a hit!) So we have a new drink. Things couldn’t be better.

We are so very aware that this trip is a gift and we are trying our best to seize every moment. It almost feels a bit like borrowed time- we know and appreciate that we could NOT have been able to do this. We know that so many people worked really hard to make this come together for us and we want you to know we are not taking any of it for granted.

Thank you.

We so needed this.

I am trying so hard to take in every moment, to smell every smell, to feel the warm breeze and to etch this carefree feeling into my mind so I can remember and strength from it when we get home and the year of chemo starts.

Life- All over the map

A family journey through childhood cancer and around the world

Logan’s cancer updates