A Short Note at the Start of Another Adventure....

A quiet Sunday afternoon, clearly slated for 'penning' my thoughts over the past couple of weeks.  With the overcast skies it would be so much easier to curl up on the couch with a good book, read a bit, snooze a bit, you get the picture.  It's been an interesting and somewhat gentle transition from the peak of the heat to the calm of the cool.  A couple of days have changed in temperature like a seesaw, leaving us with an abrupt sign of things to come.  It's ok though, partly why we would somehow become tired of one season all year long.

As it turned out, I had to put aside the writing of this post for a mid afternoon nap.  Daring to do so without an alarm at 1:30 was a mistake as I awoke after 3 p.m.  Listen to your body.  Listen to your body.  Ok, ok, OK!

On the medical front I continued wait to hear about timing for the cat scan I mentioned last time.  In fact even received a notice of a follow up appointment for the 25th to review the results.  The days ticked along, without me perched by the landline at home or cell phone in hand, ready to dart down to the hospital at a moment's notice.  Sounds silly huh?  I can honestly say I used to have such tendencies but now, not so much.  As it turned out, I got the call on Monday, Sept 24th to go in on Tuesday, Sept 25th for 9:45 at Hotel Dieu Hospital.  Hmmm, my follow up appointment to review results was for Tuesday as well, at 10:40 a.m.  Well we did go down for 9:45 then trotted over to KGH to meet to discuss results which kept us in at least a little suspense until early afternoon.  In the end, there were no major surprises.  Much better outcome than it might have been.

It was decided then and there we'll start weekly chemo on Thursday in the hopes of providing some relief from pressure on the liver to allow the necessities of life to pass through where they are meant to and not getting stored up, potentially with toxic results.  No need for a stent or shunt!  Yay.  

I hadn't received a written copy of CT results but Dr. Biagi, my Oncologist called later in the day on Sept. 25th with some results:

Hemoglobin back up to 100 from 90; no wonder I'd been feeling like a pillow with no stuffing! 

Bilirubin down from 75 to 45 which is a good sign and going in the right direction.  

Right side stressed by larger tumour (s??); mass in liver has grown; 

CA125 about 200 and something about the right side duct??? Can’t read my own writing!

Could have been much worse and we seem to have gotten ahead of what could have turned into a full blown crisis like last year which we want to avoid.  Am listening to my body, resting when needed and taking my time.  Well sort of.

When I arrived for treatment on Thursday, I was told up front we will skip next week due to elevated liver enzymes.  Hope is even one chemo treatment will help relieve pressure to allow movement of bilirubin.  Next chemo session will be October 11th depending on blood results.

It seemed to be old home week on Burr 1 at KGH with two families across from us, both of whom we've known for years but haven't seen in many.  Things went smoothly; I had a decadent sleep once home and the only issue was a bout of 'restless legs' lasting almost all night; thank goodness for the earlier sleep!  Next night went much better; back to taking things a day at a time living well.

It was as though skipping the 4th of October was a God Send in our family's larger look at life.  We had talked about going to North Bay once more before winter to say our final goodbye to my brother Andrew.  By leaving Kingston on the 4th we're able to fit in a visit in Pembroke with Kirk and Lynda, then head on Friday with plans to have a small group of friends gather in one of Andrew's favourite rest stops along a northern ride route.  

Thanksgiving weekend is most appropriate as we give thanks for the family and friends in our lives and thank God for all we have.  

On our last drive home I was able to gather up all my courage and lean into 'Just Bee-ing' by declaring to Mike I could not deal with the final disposition of my brother's remains.  He knew him likely better than anyone, even me, given their weekly or more often chats about who knows what.  Always kept between them and only lately a few glimmers of the conversations they had.  Almost without blinking an eye Mike agreed to take it on and has made all the plans.  Seems the more I practice asking for help, the easier it gets.  I can declare my vulnerability and inability without being thought less of.  My oh my, all these years staggering around with multiple platters of self imposed responsibilities, with no one's expectation of me going it alone.  Is the chain of the white albatross around my neck finally being snapped with no apparent consequences?  It's almost indescribable.  

I must admit, as noted by our neighbour Hank who I drag around from one church function to another, how I have recently picked up the pace in attendance at mass, courses and special workshops.  He has a point there and one I must pay attention to.  Even my overall priority of deepening my faith can be a disguise needing my attention.

What's most important during this transition from my all encompassing need to be busy is to be mindful, fully aware of the decisions I'm making and why.  Just because one thing is gone doesn't mean it's to be replaced with something else, no matter how righteous.  It's important to clear the clutter, and leave the table clean for a period, to become open and ready for the real purpose of my life from here on.  I don't need to fill up every nook and cranny with additional activity.  It will simply divert me from my main objective.  It's to remain open to the soft, quiet whispers of God directing my steps on a daily basis.

Simplify, minimize, purge, clear, let go, any and all words you can think of to achieve a balance of calm and quiet energy.  One thing is true of late,  how much better I'm able to manage those emotions as I persevere down the path of quiet and calm.   It sounds so simple yet for personalities like mine can be a complicated mix of deep thoughtful analysis, coupled with spiking emotions, readily throwing me off the track similar to the damage done by the recent tornadoes.  In a matter of seconds, everything can change.  Who would ever have thought mere days after my last post which included photos from the Goderich tornado in 2011, two with similar magnitude would rip through our national capital.  

Rather than delay this post, my sense tells me this can be a short message in response to the fatigue ushered in by renewed chemo.  One of the long standing issues I continue to wrestle with, hard as I try, is the balance between live for today and making any plans for the future.  It's easy to say but to live it in a real conscious and deliberate way, can be a regular challenge.  Maybe it's healthy for me to let down my guard even here for a change.  Overall I'm much more at peace with whatever the future holds and hopefully living it will also become easier.

On October 13th I've signed up for a day long workshop called "Rediscovering the Art of Dying."  Let's leave that one for now and you'll hear my take on it next time.

Wishing you and yours a very Happy Thanksgiving, peace in your hearts and enjoyable times with family and friends.

Take care, hugs and,

God Bless,
Liz

dobbsjones@gmail.com

"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."

And Now We Deal With It .....

The week after my last post I'd managed to organize and pull together a whirlwind, four day visit out west.  Southwestern Ontario that is.  Did I get you on that one?  Did you imagine the majestic Rocky Mountains and clear blue and turquoise crystal lakes?  If yes, you just had a mini vacation in your mind.  Our trips back to southwestern Ontario are like a trip down memory lane, having missed less than five going back over thirty plus years.  Kitchener, Goderich, Guelph and home.  We've become accustomed to taking the 407 to avoid 'the crazies' on the 401.  

You might be wondering what this has to do with my medical update since I always try to do that first for those interested in how I'm doing health wise.  Well, a lot.

We arrived at Marie and Frank's in Kitchener and my room waited for us, still multi shades of muted blue (I still say they painted it blue for me as there is no blue to be found anywhere else in the house).  We settled in, had a visit and sat down to one of Marie's usual delicious home cooked meals and even sat in the dining room, kitchen people that we are.  

In the middle of dinner I had to excuse myself having eaten only a couple of bites, head to the bathroom feeling slightly queasy.  Oh boy, don't tell me another episode is coming on I thought.  Well, it goes from that to feelings of hot and clammy like a perfectly cooked escargot (thought I might as well keep to a cooking theme on that one).  From there the pain starts to radiate to my back, and lately, my abdomen, increasing as time goes on.  And guess what?  I forgot to pack any breakthrough pills despite thinking of it several times while preparing.  By late evening I even contemplated going to Emerg just to get some hydromorphone but didn't and boy did I tough it out overnight.  Finally by 3 a.m. I found the least uncomfortable position and got to sleep, somewhat fitfully.  Thoughts had crossed my mind to simply head home the next day.

Morning arrived and surprisingly I felt much better but decided to call my family doc to see if there was a possibility of them faxing a prescription to a local pharmacy for a tiny supply of pain meds. Even though the phone message stated no prescriptions by phone, my nurse called and simply asked what pharmacy to send it to.  My hero!

  Off to Goderich and a most pleasant day with Pauline and Ed, my son Matt's godparents and Ed, a long ago one time boss of mine, at the bank.  Some little piece of my heart has remained there in their, two century by now, old farmhouse.  A sense of belonging and being home.
 It doesn't hurt having a sand beach on Lake Huron not far off downtown except of course, August 21, 2011 when Pauline and I were downtown when the now infamous tornado hit, smack in the middle of the Square.  

Just around the Square from where Pauline and I were

Arial view of the Square.  It used to be full of mature trees in the centre around the courthouse

 I can remember heading for the basement in the bookstore once we realized what was happening, only to have to pee in the dark, unfamiliar room.  Always did have to, when I was terribly frightened.

Liz with drunken hobo and his donkey

Liz with Sir John A.

Liz with Fishermen

 

 We even did the annual routine of going around to the concrete statues crafted by Ed's grandfather and still standing guard around the property.  Poor Matt, he had to endure being dragged around to pose with the fishermen, the drunken hobo with his donkey, to Jack and Jill holding up a long ago tennis net, only to name a few.  This time, I resumed his position!

  

Mike with Pauline & Ed

 Oh the stories can go on and it's only over time one realizes how such life experiences form the memories of a life well lived.  It's not being bombarded with the latest techno gizmo or being frightened out of your wits by a 3-D movie.  No, it's the slower, quieter place of spending time with those you love, and settling into a slower pace, made even better with time as we gently reflect on a simple life.

Back to Kitchener, thanking God for feeling reasonably well all day, to go out to a little tavern with live music you could even carry on conversation through, to enjoy a dinner of schnitzel and kraut.  Oh ya right.  I think I ate two bites and couldn't down a third.  Well that's ok, good leftovers for Frank for Friday.

Our plan was to get to Guelph early on to have a good long visit with Ryan and Niki, their three girls five and under and Krista, Mike and Rylee.  We had to text them twice to say we'd be later even though this was one of the highlights of our visit, meeting 10 month old Isabelle for the first time.  To help with context, Krista and Ryan are our oldest stepkids, of my late husband Rick with whom we enjoy a casual but loving relationship.  Before landing there though, we stopped off at our friend Diane's who also has moved to Guelph in the last couple of years and has been urging us to use her place as a base to visit from.  

A retired nurse of forty years, Diane switched into care mode, settling me into bed insisting I rest before going to Ryan's.  A welcome suggestion and one which helped me get through the balance of the day.  We arrived at Ryan and Niki's to a quiet house with Lauren at school and Grace and Isabelle enjoying an afternoon nap.

Ryan flanked by Mike Jones'

Krista, Liz & Niki

Ryan with his Girls Grace, Lauren on his back
and Isabelle at his knees

 Once they were all up and Ryan came home, it became a free for all with delightful little girls insisting on playing hairdresser with us as clients, insisting on us watching them jump on the furniture and play with one another.  Through all this, just turned sixteen Rylee was quite content to sit through it with the girls lovingly bopping around her.  Krista and her Mike Jones, yes we both married Mike Jones within a year of one another (talk about a God Wink),, brought us up to date on their activities and life in general.  We always seem to be able to settle in and blend like best friends and family do, caring deeply for one another.  I have after all, known Krista and Ryan since they were four and two.

Rylee with Lauren

Arriving home Saturday needless to say I was spent, and Mike ended up going off to a birthday party on his own.  Sunday I managed to get to church then slept away most of the rest of the day realizing something was up health wise.   Before bedtime I emailed my oncology nurse to outline the pattern of the past few days asking for advice on next steps.

Next step was an appointment at the clinic Tuesday morning.  On entering the exam room after greeting 'the team', meaning me, Mike and our expert retired nurse friend Tess, my oncologist looked at me and announced 'you are officially jaundiced'.  Combine that with much darker pee (no need to get too clinical about 'urine'), itching all over which has been harassing me for over a month, added pressure in my abdomen, more regular feelings of queasiness, increased pain and bloodwork to confirm there is a blockage to the bile duct.

My old normal would be in panic mode by now but thanks to my increased trust in God, I could 'feel' imaginary cards being laid on a table singly and individually stating all the facts.  

• Signs of blocked bile duct - not necessarily liver failure - huge difference.
• Need to determine cause of block - schedule cat scan this week or next - still waiting for call as requisition was rated urgent.
• Will base next steps on results of scan, possibly including chemo to reduce size of mass if it is the culprit - makes good sense to me and I'm open to it.
• Could consider going on hormone treatments like in the past - NO - would rather be on chemo than piling on so much weight as to reduce quality of life beyond chemo effects. Not a chance.  I will still only live the number of days God has allotted to me and our decisions only affect the quality of the journey so NO I will not travel with Maggie again (the 80 pounds I gained last time on hormone treatments).
• May have to consider a stent or shunt to open up bile duct which hopefully could be done on the inside.  Failing that may have to consider outside but would not fit with my lifestyle as it would mean an exterior drainage bag.  Ok, well that's card number four and no need to play it just yet.  Will live well in the meantime.

This week has been less active than others but many at this end would argue that.  Oh well, less for me but more enjoyable.  Settling into less on the calendar leaving more room for surprises during the day, walking into surprises and activity I may not even have thought of.  What has been very evident are the God winks of late.  Oh my.  It's like He's saying "You're finally starting to get it! And the more you get it, the more this will happen."  I've had feedback from those who like, believe and are interested in God Winks so I will close by sharing a couple.

Every evening during the 6 o'clock news there is a segment showing 'Weather Wallpaper' where local citizens are encouraged to submit photos they've taken.  

 They may include weather happenings, nature, wildlife and the like.  You've probably seen something similar.  Well, the day I got the feelings of 'getting it' was the day the photo of the day was, guess what?  Yup, a bumble bee on a flower!!!

On Tuesday on the way home from KGH I commented on a car being a Mustang but no horse on the grill.  Mike went into a story of how they have brought out a special version of the car without any markings of a Mustang other than on the gas cap.  How they've named it after somebody's wife (guess I wasn't listening closely enough at that point) and how it comes only in dark green to honour the Mustang driven by Steve McQueen in the 1970's movie Bullit.  Driving on, it caught up with us and passed us on the four lane section, Mike could confirm all of it when he saw the car.  It's just out I think for 2018.  Ok so?  Later that evening, during my putter time I picked up a tiny spiral bound notebook I'd been carrying around for over a year in my purse.  Flipping through it I came across notes which could only have come from a movie night at church.  A phrase stuck out "God reached him at the top of his game."  The aha moment for me was realizing it was the trailer from a movie put out last year called Steve McQueen - American Idol and how in his later years found Jesus Christ.  Now isn't this a God Wink and a sign we are to watch the movie together?  Mike totally agreed.

On Thursday I was to pick Mike up at the Mazda dealer since he was kind enough to take my car in for a recall.  It was going to be two hours so I agreed to pick him up, totally confident in where I was going.  I happily drove his great big new(er) Ram pickup, but as I got closer, realized the dealership I was thinking of was in fact KIA.  Oh boy, did a quick U-Turn trying to think of where in fact the Mazda dealer is.  Totally baffled, I pulled into a parking lot to text Mike asking where he was.  Head down, tap, tap, tap.  Ok now wait.  Looked up and straight in front of me was the road sign for Mazda, literally one building between us.   I had a good laugh at myself over that one.

We went downtown to complete an errand and once there, I commented on how I'd forgotten to put out my Parking Angel.  Mike said it might better be a big one to park the truck.  We turned onto King St. in the block of the store we were aiming for but of course no open spots let alone a big one.  He dropped me off, I said I'd keep a lookout and meet him in front of the store.  He'd barely turned the corner to go around the block when a vehicle pulled out.  A big vehicle.  I raced into the parking space, pulled out my phone to text "Come back, now, I'm holding spot.  Big spot".  Almost in slow motion another spot came open, a car pulled up to go in and right behind them was Mike!  I stood there in my bright pink t-shirt waving him in.  Virtually in front of the store!  Those who know me well know about my legendary Parking Angel.  Those who believe and remember to ask, will be amazed at the results.  She's been around for many years now, since the days I took my 96 year old friend shopping and to lunch back in the early 2000's.  All I can say is try it!

It's been an overcast morning today but as I put the finishing touches on this post, the sun has burned away the clouds making for yet another day of glorious sun and heat.  It's also going to likely be the last outdoor pool day so off to Carol Ann's outdoor heated pool to enjoy the remnants of summer.

p.s. I think it's taken me as long to put the photos in as to write the post!!!  I should get one of the little ones to help me.

p.s.s. Mornings have become very slow for me.  Since I have pool plans for this afternoon, I asked Holy Spirit to help me out to have this finished by noon.  Had I not poked around with the photos for so long it would be done right on the schedule I requested.  Thank you Jesus.  God is good.

Take care, hugs and God Bless,

Liz 

dobbsjones@gmail.com

"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."