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.
