22/06/2016 - Post from Teddi

This is a re-post of an entry from Teddi's blog at healingteddi.com, which she wrote after her time at a Vipassana meditation retreat in the Blue Mountains. It talks through her thoughts, hopes and fears in touching way. I hope you'll benefit from reading it.


Recently I signed up for a 10-day vipassana retreat.  The moment I decided this was a good idea was one of those watershed moments in life when your being vibrates with absolute clarity and the next step to take is an all consuming and obvious one.

This moment of clarity happened while Nick was away in Perth accepting an award and Wyatt and I were home fending for ourselves.

Being Wyatt’s mommy happens to be one of my life’s greatest challenges.  If you know me then this won’t come as a surprise to you.  It has nothing to do with him; he is the world’s most perfect little boy.  At my core I believe this struggle stems from an interrupted initial bonding period.  I’ve never asked an endocrinologist, but I imagine the stress hormones from finding out you have cancer do a pretty good job of overriding all the yummy lovey oxytocin that’s meant to be flowing freely post birth.  The point is, when Nick is away and I’m doing the hard things on my own without my superman of a teammate, all of my shortcomings and weaknesses step out into the bright light and look me dead in the eye.  It was in this environment, with my areas that needed improvement so glaringly apparent, that I made the decision to sign up for a 10-day vipassana retreat. 

When Nick returned home from his trip I sat him down giddy with excitement to tell him what I wanted to do.  He was sitting across from me in a chair listening intently to my crazy plans like he always does.  He had a funny look on his face.  He started telling me how I should not only sign up for the retreat, but I should do anything else that my heart desired.  He’s normally a supportive guy and my biggest cheerleader, but there was so much emotion in his voice that I asked him what was going on.  That was when the tears started to flow and he told me that he had received a call back from my oncology team in Sydney.  They had called him just an hour before he was supposed to leave on his trip.  They had told him that my cancer was back. 

Knowing how hard it is on me when he’s away, Nick waited until he returned to break the news to me.  It was all so ironically reminiscent of my first diagnosis, he was away accepting the biggest award of his career and yet again one of the best and worst moments of his life were mashed in together. 

I’ve always been healthy.  I’ve always been lucky.  Two years after my initial treatment and I was starting to think maybe I had beaten this thing.  Maybe I would get to live.  Maybe I’d be one of the lucky ones.  I had started gaining confidence, started once again to plan for the future.  It was such a shock, such a blow to know that my body was again at risk.  My life was once again taken out of my control and placed in the hands of others. 

So I signed up for my retreat. 

I worried that I wouldn’t be able to go, that the doctors appointments and pre op appointments and surgery business would get in the way of being able to attend.  So I made lots of calls and put in a lot of effort and rescheduled a few things to get the space in my life to attend the retreat.  Finally I was in, my spot at the retreat was secure.

Just a week and a half before I was set to leave, the boys took a trip to the U.S., Nick for a conference and Wyatt to spend a little QT with his grandparents.  Before I knew my cancer was back, I was looking forward to this time alone.  I would meditate and sleep and create, exercise, eat healthy, drink coffees and read.  I would sit in the quiet and just be.  I told Nick to take his time, go for longer if he wanted, no need to rush back for my sake.  But cancer shifts your brain.  Your confidence in the future gets shattered and time becomes outstandingly precious.  When you’re carrying around a tumour the size of an apple, thoughts of your mortality stay pervasively fresh in your mind and all you want to do is hold your people as tightly as they’ll allow.  And so my week of staycation wasn’t quite as great as it was meant to be, though I did my best to enjoy it.  I would sit in the quiet trying to just be and all I really wanted was to hear the whinging and crying, the stomping and shouting, the whistling and singing and talking, the sounds of my people.  

They finally returned home and I got wonderful nose mashing kisses and big bear hugs and tiny hand holds and everything was back to beautiful.  And then not 72 hours later I was meant to pack my bags and head off to the mountains for my retreat.  And so I reluctantly did.  I was truly excited, but so very much had changed since that first watershed moment of clarity.  Considering my new circumstances, I still thought the meditation would be a great help to me during my upcoming surgery and hospital stay and so I decided I should go. 

My stomach was in knots the whole day before I was meant to leave.  I was a pretty complete nervous wreck.  This retreat is not a walk in the park.  It’s 10 hours of meditation per day for 10 days straight.  On top of the sitting, there’s no talking, no reading or writing or drawing or painting or anything that could distract the mind.  And there’s no dinner, only a couple of pieces of fruit and some tea to last you until breakfast.  The conditions are extreme, but so are the benefits and so I arrived to the retreat center in the Blue Mountains on a clear sunny winter day, very nervous but also very excited.

The first thing I did was hand in my “contraband”, my cell phone, wallet and kindle.  Initially the whole process was extremely unnerving.  You have to muster up a lot of trust to hand over the only items that could help you to escape should the need arise.  You have to trust in people you don’t know to hold up their end of the bargain, i.e. feeding you, housing you, letting you go if you want to go, with only reviews from Google to back that trust up.  If I was going to be here spending this precious time away from my family, then I was going to do it right and so I handed over my stuff to be locked away. 

The first night they gave us dinner and a bit of orientation before our first meditation session which marked the start of the Noble Silence.  I unpacked and met a few really cool girls.  We did a lot of nervous talking in preparation for the start of the 10 days of silence. 

I powered through the first day, but by the end of the day something started to ring loudly in my mind, namely my boys at home and my precious little time ticking away.  When I left Canberra, I told Nick that I’m tough and I can do absolutely anything I set my mind to.  I know this from experience, from surviving childhood abuse, bossing five years of competitive rowing and spending six weeks in hospital fighting for my life.  There was no doubt in my mind that I would go and finish this hard thing that I had committed to. 

My Teddi heart is big and strong and resilient and determined when it needs to be, but I am no longer that unattached person that I once was.  I wasn’t entirely prepared for the newfound power of my mama heart and so by day two I started to have my first thoughts of going home. 

Over the course of the first three days I completed 30 hours of meditation and I know it was working as it was meant to.  It’s hard to explain what a day spent at a meditation retreat feels like with no speaking and no form of distraction from yourself.  It feels unbelievably endless with so very much time for thinking.  The meditation is meant to help you pull back the curtain, to see and feel all the things that a busy phone-poking, work and entertainment and event filled life is distracting you from fully experiencing.  Here with no distractions and my curtain pulled back it became profoundly clear to me how absolutely perfect everything already was.  I was watching the beautiful sunrises and sunsets and there were some interesting clouds and all I wanted was to experience all of this with my Nick, to ask him what the clouds meant, to tell him that he had sent me with enough clothes and that I was warm enough.  I knew how much he would have liked listening to the dharma discourses and I wanted to discuss and debate them with him.  I missed my best friend.  I realized in a profound earth shattering way that Nick, including his little flaws and quirks and annoying bits, is perfect.  He is perfect.  I thought about how my baby boy is so very tough and independent and serious, but how deep down he’s still such a little guy and even if he doesn’t outwardly act like it, he really does need his mama.  I thought about how precious this time is with my tiny baby and his little fat creased wrists and elbows and his giant feet and how he had just switched to a big boy bed and how he’d probably be totally potty trained by the time I got back and how very much I didn’t want to miss out on these little but important milestones.  I thought about how one day he would be a 35 year old man and that I only get this one precious little boy and it took being away from him to realize how very badly I wanted to be there for every single little moment.  I thought about how I had just been away from them for a week and how I would shortly be headed back into hospital for more treatment and how very precious every single one of these days truly was. 

Cancer can make a lot of dark thoughts pop into your head.  No matter how confident the doctors sound, no matter how much they reassure you, major surgery is major surgery, being opened up for hours on the table is dangerous.  The fear comes stabbing in no matter what you do, but it got cranked up 100 fold in the lonely quiet of the retreat.

On day two I started strong, but I felt a deep dark bottomless hole start to form in my chest.  It felt like if I started crying I might never stop.   I tried so hard to talk myself into staying, I told myself that Nick and Wyatt were fine, they would call if they needed me, I had their total support to be there, I told myself that my place was here doing this and that it would benefit not only me but them as well, I told myself it was only one Saturday away from my baby boy.  But my internal desire to be home with them was overwhelming.  The tears fell like little raindrops onto my meditation cushion as I struggled my way to the end of day two.

Day three was an uphill battle; I reluctantly came to the realization that my heart was no longer in it. I started a 10-day fight with loneliness on the tail end of missing my people.  I had a long hospital stay looming on the horizon in combination with an uncertain future and the anxiety and fear that goes along with it.   On the evening of day three the discourse talked about how we were just impermanent balls of gas (this made more sense in context), and all I could think was how all I really wanted was for my ball of gas to be near their balls of gas. 

I felt disappointed that I wouldn’t get to finish and have the full experience and benefit of the retreat, but I also felt great conviction in my decision to come home.  Ultimately the timing was wrong for me.  Ultimately the question mark that is my upcoming surgery and treatment was too much for me to sit with undistracted.  Ultimately I would like to try again, one day when the time is right and the journey ahead of me is a little less steep.  Ultimately I’m proud of myself for giving it a go and I’m grateful for the soul shifting lessons that I learned during my stay.  When I finally made it back to my perfect love and held his face in my hands and cried warm salty happy tears and kissed him all over, I knew that my hard choice was the right choice and that everything truly is, and always will be, absolute perfection. <3

http://www.dhamma.org


14/4/2016: Reflective Journaling on Teddi's Diagnosis

I wanted to share a personal journal entry from the evening after my call from Prof. Morris (written of course in my confettidori!).  This entry was written in the Canberra airport, as I boarded the plane for Perth, Australia to attend a major announcement from the Australian Renewable Energy Agency where my research was to be featured.  It was one of the biggest moments of my life! And just before I headed off to celebrate - in came the "here we go again" phone call..


So I got the phone call I was afraid of today...

So i got the phone call I was afraid of today - Teddi's cancer is back. 

Those words are so hard to write, and even harder to fully comprehend. With an hour left before my trip to Perth to announce my ARENA project, my bags packed, my suit jacket on - the call comes in.

Just as I move forward to celebrate and announce my greatest victory, in comes my greatest tragedy.  I could barely make it through that phone call with Prof. Morris - shaking as I noted what he said: there is recurrence, tumour in the lower left part of the pelvis, and she'll need another operation to handle it.

Shit that is heavy.  It means, once again, a big surgery, ICU time, a long recovery and another bruising to a beautiful soul (which is of course the hardest part for me).  She was just finding her stride, just starting to bloom, just beginning to understand herself in a profound way - and BOOM, here comes the counter-punch, the gutshot, the "remember me?".  All of this is such an enormous thing to contemplate, and creates such compassionate sadness for her within me.

My whole body fell out from under me when that phone call ended. Straight to the floor, I collapsed. So devoid of any knowing on what to do - just like that moment on the Canberra Hospital bathroom floor, 2.5 years ago, on the night of my son's birth, after I'd tucked him in for his first night of sleep, when I was finally able to start to process what had just happened to me...

But from that collapsed position of tears - one thing picked me back up, and gave me courage. She is still here! And more than that, she is a more incredible version of herself today because of he struggle with this disease 2.5 years ago. Such strength, creativity and vision have emerged from that courageous woman who made it through those tough 5 weeks in hospital back in 2014. Who stood up and walked laps in the wards with all her tubes & machines in tow.  Who handled that bastardous NG tube and 3 weeks of not being able to eat or drink like a boss.  The woman who emerged victorious and grateful on a a long ride home, two years ago, to a dusty, sunfire sunset - which looked very much like the raging sky tonight.

And this man, who writes these words,  sitting here on the floor of the Canberra Airport,  headed to announce his biggest life achievement, now feels brave, bold and capable of rising to this new challenge.  I have already faced the scariest moments, the deepest of fears - the potential loss of my wife back in 2014 - which means that today, I am ready for this future, in all of its uncertainty, because I know what it takes to make it through this: surrendered courage.  

Moments like that phone call, that collapse on the floor - show me so profoundly that I cannot be the sole shaper of my own fate, the true former of my future.  All of my sense of control is an illusion reflective of a small world and a small mind.  I am but a bit of chaff in the wind, a tiny grain of sand in the infinite Universe, bounced about by forces much greater than myself. 

And so, as I board this plane, I'll move ahead surrendered, to whatever happens.  Wherever this goes. And with that attitude, I move forward knowing that fear has no place in my heart. I will engage this with the resolution to be strong, confident and bold.  I will be unwavering in the knowledge that , while l am just a tiny part of this big Universe, I am at the same time, a manifestation of its amazingness, and I need to just go with the flow. 

So here I go, surrendered. Don't wish me luck, wish me love. Love for whatever is ahead.

 

-Nick-



13/4/2016: Here We Go Again

HealingTeddi Round 2 Begins

As a survivor of any cancer, you (and your family) are subject to the wonderful world of follow-up scans & testing and an associated phenomena known as 'scanxiety' - a period of time after your scans where one pretty much sits around in paralysed numbness while they wait for a phone call to tell them whether or not their cancer is back.  It's pretty much the suckiest part of your year. And lucky you, you get to do it every year... and maybe even more than once per annum!

When you finally get the call regarding your follow-up CT scan, MRI, bloods, etc (which feels like an entire year of agony in and of itself) after your annual trek to the local medical imaging centre, complete with foul smelling contrast drinks and needles (and a hole in your wallet) - you are left with one of two possible outcomes, both polar opposites on the emotional scale of awesomeness:

1. You're ecstatic. Pop the champagne. Share a selfie on Facebook.  You get another year of celebrating life, drinking wine and thriving in your aliveness. No cancer. All happiness.

2. You're devastated. Cast back into the darkness of anticipating the turmoil of cancer treatment, surgery and everything that goes along with it. Gutted, broken, down and out.

Yeah, I told you they were opposites.

Last year, in 2015, were we lucky to be in category 1. Wonderful! Hooray! Super fantastic! Best news ever.

This year, 2016, not so much... (shit!).

Not so good news & recurrence

On 12 April 2016, I was unfortunately informed that Teddi had a recurrence event.  The call came about 1 hour prior to me leaving for the airport to travel to an announcement celebration for a big research grant I had just won (literally the biggest moment of my professional career!). So here I was, once again, taken from the highest high, to the lowest low. 

The news?  Tumour had shown up on her most recent CT scan and she would have to have an operation to remove it.

Shit. Damn. Crap.  I was gutted. I quite literally collapsed to the floor and sobbed. What. The. F*ck. This again? Damn it... Why did this happen? Oh screw it, we know there is no answer to such questions.

But at least there was some good news...

OK, the good news? Thankfully, the recurrence was believed to be localised to the lower left part of her pelvis, on the remaining portion of her left ovary.  There was no evidence of it showing up anywhere else, and the operation was expected to be 'non-invasive' this time around.  That was a big relief, because that meant it wasn't nearly as bad as it had been last time. And last time, it wasn't just bad. It was BAD, with a capital B... hell, with all the capital letters!

For those of you who missed episode 1 of this shit show - Teddi previously had a peritonectomy to treat this disease, a condition known as 'pseudomyxoma peritonei'. A nasty cancer where your appendix grows a primary tumour and ruptures, seeding small mucinous tumour cells around your peritoneal cavity, which then grow into big nasty tumours all over the place.

This wonderful surgical operation meant that she had to have a big 12 hour opening of her abdomen from pelvis to sternum, where she lost (are you ready for this?)... 1/3 of her colon, her omentum, appendix, right ovary, half her left ovary, her spleen and her gallbladder (don't worry they did leave some organs in there... I think).  They scraped tumour material from the bottom of her pelvis, up to her diaphragm and the lining of her heart, and awarded her a PCI of 24/39.  Meaning that 60% of her peritoneum had involvement from the disease. Nasty Stuff.

Following this operation, she was in the hospital for five weeks, with follow up chemotherapy and the inability to eat or drink for four week straight. 

To eloquently elaborate on this experience: it sucked.

But to be more philosophical about it: since it sucked so bad last time, and we still kicked cancer's ass, we knew that we could handle it this time around

So here we go: Cancer round 2

So now, here we are, winding up for round 2.   Thankfully, this time, things look much less intense.  The surgical team in Sydney at St. George Hospital are lead by Prof. David Morris - a world leading expert in this disease - and they think that the tumour is very localised.  She'll have to have another peritonectomy operation, just to be safe, but we expect that it will be much easier for her to recover - you know, only 7-10 days in the hospital. No biggie.  And she gets to keep her all of her colon this time. How wonderful.  So, peritonectomy number two! Easy done mate, right?

Well... relatively so.  We are very optimistic, and in good spirits about this.  But I do think it is important to turn back to the internet for keeping people informed, and help direct some support towards our family. So I've set up "Round 2" here on my personal webpage, where I'll blog about our thoughts, emotions and experiences as we venture through this chapter of our lives.

So, Thanks for coming along. Let's all, once again, get behind Teddi, and cheer her onwards as she journeys toward good health. I sincerely believe that this will be the end of her battle with this cancer.  After this, I am confident that she will be cured. So let's guide her through this tough time with some LOVE, shall we? After all, it worked last time :-)

More from us soon.

Peace, Love and #HealingTeddi

-Nick-



 

 

/*