BELIEVE

Believe. 

Believe in a cure.

Believe in God or your version.

Believe in the power of medicine.

Believe in the power of love.

And get some tissues if you a sappy kind of person.....

If all it came down to was believing, this nightmare would be over. I could jump into the deep end with reckless abandon. I could keep my outlook kick ass and positive and never, I mean never, give up.

But the truth is I’m being buffeted by waves of fear, terror, sorrow, guilt, jealousy, anger, and did I say fear. And worst of all I believe that I may be the ultimate cause of my demise if I don’t change this way of thinking yesterday.   Thanks to the person that brought you the law of attraction. Add sarcasm here….

We just had our family 2 year “celebration of a cure” trip to Hawaii. It was magical. We were together enjoying aloha with no worries, no responsibilities. I’ll write more warm and fuzzies on that trip soon. We arrived at home on a Friday and I dragged my jet lagged ass to get my blood work done for Dr. Tequila whom I was to see the following week.

I had a lazy weekend and was very happy to be heading back to work. I had a busy week ahead of me and I was stoked that I could manage it all. I loved working full time. I had days when I would have happily worked around the clock with the kids buzzing around me. 

I was driving to my routine 6 month oncology apt on a beautiful sunny April morning. It was a few days short of my 2 year  “cancerversary”  and I was wondering if I was going to finally be told that I was “cancer free and in remission.”  I wanted to do that photo holding a placard on Face book. I had only finished treatment last August and had a clear liver scan.  I was working full time and doing a great job.   I was starting to feel more energetic. I was trying to exercise and had registered for the Gran Fondo  to do some fund raising for Callanish. It was time to give back, and get on with the new normal. I had a plan that included eating a lot of plants, exercising and meditating all the while working full time and parenting. Yes I expected it to be challenging. But I was ready. And I was singing along to “I’m on Top of the World” by Imagine Dragons.

I went to my appointment and ever smiling Dr Tequila was so happy to hear how I was doing. I was gushing all over about how yes, I still had chemo related issues but I was totally rockin’ life. Then I asked the question, “So how were my blood results anyways.” Dr Tequila got the empathy /concern sparkle going and the world fell away from under my feet. The first of many tears started flooding down my face.

The cancer markers in my blood were up higher than before I got treated. There may have been a mistake in calibration but due to the aggressive nature of my cancer, I needed to be scanned head to toe. He started running through a list of chemo options – some still in trials.  I knew the names of all the drugs because I’ve been studying the trials for a few good buddies that needed a miracle.  Apparently I needed one too.  A couple of drugs had made it into mainstream use but would require major funding. One was still in trial but he would get me “on the list.”

 I was reeling. I was alone at this appointment as it seemed pointless for Jeff to bring an extra car down for a routine visit when I was planning to go back to work. Dr Tequila offered to call Jeff or my work. I declined.  He suggested I try to keep working to keep me occupied until we figure it out. OK I would try. “But give me a big bottle of Ativan please.” And then I left the script there…. So no impaired driving….

Well I called Jeff and we had a brief talk. Enter sorrow so deep one can’t describe it. I felt so utterly sorry for ruining everyone’s lives with my news.   I drove up to work and made it into one office to talk to a trusted colleague whom I left the task of telling my team and organising my work. I went home. And cried a bit I guess. We decided we wouldn’t tell the kids until we knew details.  I worked a bit for a few days with great support. One colleague was asked, “So did you cry when you found out?” Her answer was, “No, Patricia doesn’t need me to cry, she needs me to help.” Well that sums up my workplace. Yes I know there were some tears but I also know that everyone quickly went into problem solving mode to make sure my clients and I were well taken care of.    

Within hours of leaving the Dr my bone scan had been scheduled for early the following week and an order had been sent to CT in Whistler - upon my suggestions knowing there was no wait list there. Some missing blood work was remedied by Princess Pam (Chemo Angel #1) and I went for my CT that Friday. Then the bone scan Monday. I spent a nice afternoon at my friend’s lake palace to pass the time and build up my girl power. I did a lot of visualising healing lights around my body and I couldn’t feel anything out of the ordinary. Just the usual heavy farting and racing to the washroom – common since my first chemo.

Then I went to work. I was just settling into my day when my cell rang and it was Dr Tequila. “I have your CT scan results. Do you want to hear them?” Am I supposed to say no to that? I rushed down the hall into Chemo Angel #2’s office and put it on speaker phone. “Well, your brain is clear.” (I certainly hope so) “It’s your liver and liver lymph nodes.  Lots.  Big.  Do you want to know how big?” He started to tell me.  I heard one, my brain went blank and then I jumped forward to the plan. Chemo.  ASAP.  Before we even get a biopsy. Okee dokee then, chemo within the week, send the orders to Squamish and “please send me some painkillers for the bone pain.” No problem, it was all done in moments.  This man is fast. And knows his shit. I asked some pretty tough questions about different chemo approaches and he had it all in the bag. With leftovers in his back pocket. He was also already working with a drug company to get me onto Perjeta – a new Her2 cancer ass kicker. Unfortunately the TDM1 trial had closed (that’s a new super-herceptin) but he thought Perjeta was better for me as it’s HER-1,2,3 AND 4 suppressing.

OK Patricia – here’s your first opportunity to BELIEVE.

Quick call to Jeff – he was  happy there was a plan. Chemo Angel #2 had already spotted space for me on the schedule the following Tuesday to start treatment. Perfect. We’re doing chronic disease management from now on sista! That means stop what’s growing, shrink what’s there then stop if from coming back. 

Once again BELIEVE!

Then Chemo Angel #2 made sure I had a bit of fresh air, the Loveliest-Ever OT made my some liver cancer melting tea and the day went on. I even attempted to chair our brain injury gap meeting but my damn phone just wouldn’t stop ringing. And when your life is on the line you answer it. 

Well finally at 1:20 Princess Pam calls, “So can you be here in 5? I’ve got the drug, the pharmacist and the Dr and I’m here to give you your first treatment.” Holy crap YES. Can I just stop cancer in its tracks RIGHT NOW. OF course I went.  My team had been sneaking around “behind me” during our meeting to set this up!

I had 2 treatments over 2 days. I was a very bad patient –trying to eat and work and use my phone at the same time. Almost didn’t make it to the bathroom at one point and pulled out my IV. I was told I’d have to put it back in if I did that again. Cue time to chill. I felt the magic potion entering me. I did my golden and white light visualization of it entering and melting the cancer. I felt at peace sitting in that chemo chair attached to the gently pulsing drip. And that stayed with me for a bit. I could even feel the tumours in discomfort as they were hit by the chemo as soon as it started.

I realize I was lucky and owe a debt of gratitude to all that made it happen – my manager, my team lead, the admin staff, the chemo angels, the pharmacist, Dr L (aka cancer ass kickin’ mentor) and even the cleaning staff trying to get the chemo room done around me.  That was damn fast to get into chemo. But you need to know in Squamish home care our credo is “do what needs to be done properly and right away. “ I may have had a slight inside advantage – I get a lot of love there. I am the Palliative OT!  But I know for a fact the next urgent request was booked within the week also and if I had waited for the following week that would have put everyone back a week. Now you see why we work this way? 

On Friday morning at 5 am I woke to shooting pains in my hips and legs and I knew it was back. Bone pain.  Well at least I had my bottle of Perc’s and as long as I stayed on top of it every 4 hours I managed. Now a word of advice to self – don’t try to go a bit longer to see if you can handle the pain – you can’t and it makes everyone and everything around you miserable.  I called my Chemo Angel #2 and she just encouraged me onwards. “Next time we’ll add the gabapentin. “

Then Saturday I started to get nerve pain and numbness. Thankfully I knew what it was and why I couldn’t feel my feet when I got out of bed. It’s called peripheral neuropathy. And it kinda burns, throbs, sends sharp jabs of pain, tingles, in my hands couldn’t feel the keyboard very well – you should see the errors. But I’m OK with the pain. The chemo must be working, the side effect s are worth their price in gold – to continue living. 

Just BELIEVE.

 My mom and RN sister came to help out. God I love them and hope they know I appreciate them. I was pretty self-involved and grumpy the whole visit.  However, I received gifts and food and my children had plenty of attention. I had my port replaced.  That’s the direct-to-large-vein device in my neck they can give chemo through.   I had my heart scan because the chemo drugs I take can damage my heart.  It was a tough time, I can’t lie. I was still reeling from my first chemo and the whole story that got me there. I am a mother too and it must be heartbreaking to see your daughter have to battle for her life.  My sister massaged my achy feet every night.

The week after chemo was the toughest time I’ve EVER had emotionally.  At the end of the week we watched a very intense and sad but beautiful movie, The Impossible, for family movie night.  It’s a true story in which a family gets torn apart by a tsunami in Thailand in 2004 and finds their way back to each other. It’s a full box of Kleenex kind of movie and thankfully it has a happy ending. However, it brought home the emotions Jeff and I had been going through over the last 2 weeks.  What resonated most was when the mom was being swirled and twirled around in the wave and she fights her way to the surface, a victorious hand reaching though.  And then this image repeats in slow stop-motion as she undergoes major surgery almost dying and leaving her husband to raise their babies.  

 

So Jeff says to me “See, Patricia you gotta fight!”

Silence and tears for a long time.

Then he said  “Just believe”

And I knew what my mission was from that point on.

BELIEVE.

To believe:  in a cure; in god; in miracles; in medicine.  Because death is not an option.  (I belong to such a “club” alongside some amazing women)  I have kids to raise and disadvantaged people to help.  

BELIEVE

So in the good news department I have been approved extended medical (PBC) funding for a brand new Her2 drug called Perjeta. First in Canada. It’s a mere $7-10K per treatment and it’s so new the government won’t pay.  It is supposed to improve outcomes and extend survival times in HER-2 metastatic breast cancer. I have heard of and met some women living for years with bone, liver and brain tumours and they find a way to keep living. They call it a chronic disease. But first we have to stop the aggressive bastard and then melt the tumours so they don’t impact my life.  I will be on a brutal course of chemo again for several months to do this then will likely take some form of chemo for the rest of my life to keep the cancer in check.  Likely Herceptin or one of these new classes of drugs: HER-2 monoclonal antibodies; PARP inhibitors; VEGF inhibitors; oral multikinase inhibitors; EGFR inhibitors; CMET pathway inhibitors; MTOR kinase inhibitors; HDAC inhibitors and so on. In case you’re bored there’s always the NCI website with all the international trials posted and some terms get defined so you can find you own butt by the end.  I was overwhelmed with the options.  There are completely new ways of attacking cancer without attacking the healthy body. Honestly, this is worth some in depth journalism. (hint to some in laws) So I’m trying to roll off that optimism. We also know much more about natural healing and things you can do to increase your odds for real. Like dogs, exercise, meditation, an 80% plant based diet, less bad fats and of course body care products. Here’s a thumbs up for my Sis in Law Gill Deacon’s tip sheet.

So when you find yourself meditating, praying or in a moment of silence please ask God or the universe or whoever you talk to when you’re alone for a medical miracle, a cure, and a higher power that will help guide us through.

Trials info: wwww.cancer.gov
 Skin care tip sheet: www.gilldeacon.ca/tips.php

All my love, Patricia