Then and Now - Acceptance is Beautiful

Welcome to summer!  This year's summer solstice also boasting a 'strawberry moon' which won't be visible again for another 50 to 70 years, long past my expiry date! In between the start of summer early in the evening of June 20th and the glowing moon, a severe weather watch flashed across our TV screen including the possibility of tornadoes!  Oh my, I was feeling much like Dorothy from the Wizard of Oz although no need to click my heels together to get back home.  Rather, just a curious look outside to see the wind whipping and the rain pouring, bringing much needed nourishment to thirsty plants and flowers.  Maybe this is the experience that has brought some of my pondering thoughts to the surface that I will share momentarily.

The next day, June 21st another visit with my oncologist who provided an update: 
All bloodwork for chemo was ok meaning round 5a would proceed the next day. 
Weight was 166 which is ok since I am now definitely starting to feel the difference with 35 pounds gone. As is, I'm sure, my heart and lungs.
The most exciting news is that my CA125 as of June 7th was 52! Remember how it started at the beginning of March at 1064 when the 'normal' person has a count of 35 or less?  Wow!!! Keep in mind though, it's the trend, not the exact number that's important. That's what I keep telling myself.
I have developed some neuropathy in my feet and maybe hands. (Sort of loss of feeling). What I learned is that despite still having feeling in my feet, it's like my toes are somewhat swollen and I'm walking on 'pads' which affects one's overall sense of balance leaving me feeling unsteady on my feet when I first get up.  Now that I better understand this strange sensation I can make a mental check on my list of side effects.  One of the best ways to manage this is to walk.  Ok, that's within my sphere of influence, so whether I walk in the pool or on land, I will keep walking.  The rest I can accept.


We confirmed that we will complete 6 cycles ending the first week of August and then keep monitoring by the numbers after that. Should further treatment be required, we'll explore the options at that time.  In between, I will continue to focus my energies on optimizing my state of health, which is Job 1 these days. 


I asked if immunotherapy is being used in clinical trials for my type of CA.  It is, but in my doc's cautious and reserved way, she advised that we don't know if I would be a candidate. There are numerous screening tests that must be applied with a full review of any potential candidate's medical file. Any single, seemingly small find can affect whether the patient is eligible.  As well, since the current therapy is working so well, a clinical trial would not be considered right now. It will be kept in mind though as time goes on.  In summary, my inquiry was just that, something potentially to be considered in future, to be put on my giant whiteboard and weaved into the greater picture if and as time, need and interests arise.  I can accept that. 

Without going into a full description of what immunotherapy consists of, not that I could anyway because often the details escape me, it's about boosting the immune system, I believe through drug therapy, to ramp up its ability to focus on and only kill the bad cells and leave the healthy ones alone.  This, as compared to chemotherapy, which strips the body's entire system of all fact growing cells, hence the hair loss, nausea, and other disagreeable side effects. All good to know and my physician is most pleased with the progress we're making.  I'm sure even for them, it must be most satisfying when they can see  positive outcomes from their efforts of using their training, education and experience.

Now back to the pondering I mentioned at the start of this post.  I've been thinking back on how four years ago I was going through the midst of various medical tests, much the same as so many other people, trying to keep on top of the areas of my health over which I had some influence.  To this day, I thank my friend Brenda for 'pushing me'  to see my doctor about a vague pain in my lower abdomen.  Nothing specific, nothing scary or frightening, as is the case with how a cancer diagnoses can suddenly mushroom like an atomic bomb in the midst of an ordinary, everyday life often accompanied with minor aches and pains.  This led me to consider how traumatic the loss of my hair was at the time.  After all, hair loss is the number one stark, visual  and constant reminder of what's going on inside an otherwise healthy body.  It's like walking around with a neon sign or sandwich board announcing to the world "I've got cancer".    No wonder it's so devastating.  Too often, we barely have time to process or get used to what's even happened, when we start losing our hair due to, thank GOD, relatively immediate treatment.  In an effort to maintain some sense of normalcy, I know in my case, was to keep that external visual as it was. Even getting the cutest short hair cut I've probably ever had, it was monumental.  

Almost four years later, I've had the longevity and the benefit of being able to go through the stages of grief that are usually reserved for the survivor's of death.  You may have heard of a book by Swiss psychiatrist, Dr. Elisabeth Kubler-Ross, 'On Death and Dying' which was inspired by her work with terminally ill patients.  It speaks to a series of emotions that the survivors of the deceased go through, often not in any logical order:  denial, anger, bargaining, depression and acceptance.  How did I learn about this book or its contents?  Believe it or not, on a week long course I attended while working at Bank of Montreal.  And later, another two day session while working for the Hospital Foundation. The purpose of both was providing support to Change Management. The concepts of the book have gained wide acceptance and, for me, a model that I have returned to many times given its application to so many areas of life and work.  Even positive experiences can lead to a slide through the downward emotions before coming out the other side with interest, exploration, and acceptance.  All you have to do is google Dr. Kubler-Ross' name and come up with a wide range of information.  I'm thinking it might be my turn to read her original book.  The purpose of this 'rant' is to share how I believe that I have come to a much greater place of acceptance at this stage of my life.  For me, one of the key learnings has been on just how much communication must take place as it relates to any change in a person, in a family, in a workplace, on a team - you name it!  This model has become my own personal 'gold standard' of managing change within myself and with those around me.  The 'diamond standard' of course is my relationship with my faith and with God.

My relationship with my faith, as you may know if you've been following this blog with any regularity, is that it has been growing almost in leaps and bounds.  It's been making the slides down the various rabbit holes much smoother allowing me to get to the place of acceptance much easier.  More like a calm canoe trip down a lazy river rather than white water rafting, dodging boulders while having little to no effect on the gravitational pull of nature's power.  

The exploration of Ignatian Spirituality has been I'd say, the greatest source of growth for me with a continued focus on 'praying with indifference' rather than praying for any specific outcome.  I've talked about this before and continue to experience days when, I can accept God's Will for my Life, I can face just about anything.  On the contrary, when my own, puny, self centred ego gets in the way, it's like I've made a leap from that canoe into the white water raft and, only later, wonder why I ever made the attempt.  Don't get me wrong, I admire people who find a true rush by such experiences; it's just not how I want to navigate what's left of my life.   The driving factor  behind that leap is usually something external to self that causes the somehow immediate shift.  Like something I hear or see, that causes my brain to jump to a conclusion without having any facts to support that conclusion, causing me to come to a potentially rash judgment and then dwell on the issue.  It happened to me just this week, leading me to be fussed and bothered about something that wasn't!  Oh what a lesson.  By applying another concept of Ignatian Spirituality, called the Examen,  I was able to step back and realize that I was not only leading the charge on misinformation, I was the only one suffering as a result of wrong conclusions.  Had I simply taken an 'indifferent approach', left it in God's Hands, I would be been just fine thank you very much. As I write about it, I'm able to smile at my own behaviour and more importantly, learn from it. I can accept that.

Part of my plan for the future is to explore more fully the short life of St. Therese of Lisieux.  The reason for this is that she has now come at me from at least two very trusted people in my life.  I've learned this means 'pay attention', you are being guided.  Besides, knowing my eclectic personality and tendency to bounce from one subject to another, I benefit from having placeholders to return to after chasing a rabbit down another hole.  Sort of like having order within a brain that can become disordered by the distractions of an insatiable curiosity about just almost anything.  My Dad used to say I was just plain nosey.  I like my description better. It's why having overall life goals is so helpful - God First, followed very closely by Health and Family.  I can accept that.

I'd like to close today with a comment on a phone conversation with my friend Carol Ann when she was helping her mom in Halifax last week.  She shared with me how she took some time to walk the beach in the midst of what could be a fairly challenging situation. I couldn't agree more with how walking the beach is so decadent. It reminds me of when I lived at home in the Niagara area where a sand beach was available within a ten minute drive in almost any direction. Whenever I was distressed, I'd drive to the beach and just spend time playing in the sand, listening to the waves while my head and my heart took a time out. The summer I was 15, I was a maid in Crystal Beach for a wealthy American widow (78) and her bachelor son (50). They had a 7 bedroom, 5 bathroom cottage on about 200 ft of waterfront sand beach with a view of the amusement park in the distance which hosted one of the remaining wooden roller coasters. Sigh, all since replaced by condos now but leaving many Kodak moments in my mind. Some of our most cherished memories can come from what, at the time, seem like mundane, necessary tasks to achieve greater goals.  Only as an adult do I realize how much I learned that summer, about relationships, about responsibility, about confidence, about humility and much more.  What a great way to frame that learning - living it out at a cottage on the beach.  Thank you Nick, my former neighbour who invited me to consider the job.  After all, he was the part time gardener after working full time at the local Nickel Plant.  

Thank you for taking the time to share a little more of my adventures in prayer and medicine.  It was my hope to get this out before the 30th of June, or even later.  High fives - it's done!!!! A day before my self imposed deadline.  Have a wonderful Canada Day weekend, good health, safe travels and much fun with friends and family.  More on that next time after our weekend with eldest step daughter Krista, hubby Mike Jones (yup we have two in our immediate family) and granddaughter Rylee,  Grandaughter Emily, Rylee's sister will be with her mom so we send her virtual hugs.

Take care and God Bless,
Hugs
Liz

dobbsjones@gmail.com
'Prayers wrapped in faith and sent with love are the greatest gifts we can receive.' 

Graduating into Summer and Beyond

On the medical front - nothing new. How's that for news?  Best I've had in a long time especially with the hopeful picture painted by my oncologist shared with you in my last post. 

Treatment 4C was completed last week without incident leaving this week free from the Tuesday trip for a poke for bloodwork and return trip Wednesday for more pokes and chemo.  As well, no fantasizing about ego muffins made fresh by the staff of the Auxiliary Cafe at KGH. They have become my favourite indulgence over the past couple of months while lounging in my lazy boy chair in the chemo unit. According to the nurses, if I can tolerate eggs, no appetite problems.  I must admit though, taste buds seem to have been stripped of their taste for certain things. One, which I'm not sure I would have ever believed, is the taste for alcohol. Mind you, it's not that I consider myself a big drinker by any means, but to even be put off white wine?!  Truly, that's a pain I could do without. All this time I've been saying that if I get told 'This is it', my demise is imminent, I'd simply reply 'Then bring on the wine!'  And now I don't even want it!  Imagine?!  On the bright side though, many less empty calories, less sugar and, voila!, less weight. I'm feeling much more mobile having shed roughly 35 pounds since retiring my 'Maggie meds'. I say roughly because vigilance is required to avoid the obsession about numbers on a scale or the numbers reflected in the CA125 blood test. Both of these measures are intended to provide an overview of trends without cause for elation or desolation based on any specific number.  Hence, I choose not to jump on the scale on any regular basis outside of the mandatory leap prior to a doctor's appointment nor call or email to obtain the CA125 results even though I've had two done since the reported 128.  Having this week 'off' has in many ways reflected a more normal routine with a conscious appreciation of how time is my own, to do as I please, even if that includes a whole lot of nothing for a change.  

I have been able to spend some time playing in the garden, digging dirt and pulling weeds which I find good for the soul; mine anyway. To me it's a solitude with a purpose as I yank out the uninvited and pull out the grass that has grown where least wanted, while freeing my inner spirit to explore some of my deepest thoughts.  The benefit is obvious of course to see a refreshed little plot of earth more clearly boasting its intended inhabitants while a deep sense of calm has claimed my inner garden.  Nature's secret of course is to keep it all in balance, or more appropriately, in its proper rhythm.  

This post is a couple of days late which dare I say seems to be becoming a habit which I will blame on external circumstances rather than my own procrastination.  For those of you familiar with the Myers Briggs Personality Index, my profile is that of Extrovert, who talks to think, Intuitive, who can see the big picture without going through all the details, Feeling, who makes decisions based on emotion and Perceptual, who declares "Deadline?  I better get started!" (vs. the Judging, who plan their work and work their plan).  If you have patience, you'll bear with me as I remain divided between sitting at the computer and playing outside pondering what will attract my attention next.  Keep in mind though, that the fodder for my posts is always gently percolating in the back of my mind in order that when the time comes and I can wrestle myself into the chair, it really does seem to just flow.  The secret of course is that I invoke the Holy Spirit to do His work through my hands, which I truly believe He does.

On that note I'd like to briefly share a little bit of my learning over the past several weeks from the adult faith development course offered at our church, called the Wild Goose is Loose.  If you happen to be from a Christian background, you'll have some familiarity with this divine, yet elusive member of the Trinity known as the Holy Spirit.  (feel free to visit thewildgoose.com for more information)  My interpretation is that the Holy Spirit is the power behind many of the actions and activities that we may do in the name of our faith.  For example, one can simply ask 'By the power of the Holy Spirit open my heart and my mind to hear what you want me to hear and what you want me to feel'.  As described in one of the videos, 'the Holy Spirit is like the wind while we are like a sailboat waiting for the wind to fill our sails.  From there the creativity can be boundless and we can skip across the water with confidence knowing we have the power of God right in our midst.  Being filled with the allows for feelings of being good enough and dispels the feelings of guilt and shame we may be carrying.

Yesterday we spent part of the day in Waterloo to attend Nathalie's graduation from Wilfred Laurier University.  It's the first post secondary convocation I have attended given that I hadn't attended my own, my son Matt chose not to attend his and Gabe also didn't attend his own.  I will openly and publicly apologize to dear friends Marie and Frank from Kitchener for skipping in and out of town without connecting.  We will make it up to you - pinky promise!  Five of us piled into the truck to see the most important day of Nathalie's life for the past four years.  GRADUATION - something that made me go 'hmmmm' as I sat among hundreds of family members almost glowing with the sense of pride and accomplishment for their loved one.  What I found of interest was how I replayed my own life through a lens of self evaluation wondering if I have truly lived up to my potential, and given my all in the intervening years.  These students are standing ready on the diving board of life to jump, dive or somersault into the next phase of their existence here on earth, hopefully with a sense of purpose and passion.  

What I find somewhat surprising is that having received a cancer diagnosis almost four years ago, did not have the same profound affect on me.  Maybe it was sitting in the midst of these bright inquiring minds that sparked my own emotions.  Maybe it was the comments made by the Chancellor, Michael Lee-Chin or those of Dr. Peter Wilkinson Howitt who encouraged all graduates to follow their passion.  Or maybe just an opportune time for reflection on the years gone by, almost in an instant, without any guarantee for the future.  The solace in all this is that we have to believe that we made the best decisions we could given the information we had, at the time of every cross road in life.  Life was different a generation ago and will be different a generation from now.  It's just that we've gained the depth of experience having been around as long as we have and gained the insights and knowledge from living our own lives.  

Lunch with a friend recently provided me with yet another aha moment, profound in its simplicity.  What else is new?  It seems to be happening with some regularity.  For whatever reason, the subject of purging came up and how each of us deals with things differently.  Here I have been, almost like a soul chased by demons, trying to prepare and get ready for my own exit from this earthly existence.  Yet here we sat casually chatting when my friend very calmly stated that whatever will need to be dealt with, will have to be done by her two sons.  I thought 'pardon'?  You mean you're just going to keep living your life, doing the things you enjoy, ignoring those you don't?  You're going to leave your house and possessions as they are and not start stripping shelves bare of their furnishings in anticipation of your trip to the great beyond?  Oh what a calming and relaxing image.  More importantly, a very practical and astute way to look at things.  The impact it had on me was like taking a box of disjointed thoughts, giving it a good shake resulting in a much more orderly mental image.  It highlighted the importance of separating the earthly from the spiritual.  It's also provided me with the freedom to focus on what I'd like to do rather than what I think I have to do and if it's nothing at all but looking out at the birds, listening to their serenade, so be it.  On that note, I will sign off and perhaps go and do just that.  

Happy Father's Day to any Dads who might be reading this, have a great weekend enjoying this glorious entrance into summer.

Lots of love and hugs,

Liz

dobbsjones@gmail.com

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

The 'Patient' Patient Wait - Life in the Cancer Lane

First off, let's cover the medical update.  When lying on the couch toward the end of April, there was a small part inside that had to continually remind me that  - every day forever more was not going to be like it was.  A little ping to self that the days will brighten, much like the sun rising every day to bring new hope for the days ahead.  Or popping one's head out of a rabbit hole to see that life can actually be normal for a time.  May has certainly been a month of beauty in terms of well being and an overall 'great picture ' that the oncologist was happy to paint for me.

Weight loss has crept up to about 35 pounds (yay), tumour marker while not updated (maybe next time) was 128 at last count, mass in liver has shrunk closer to 50% than original report of 30%, bloodwork was very good with even hemoglobin close to normal levels.  Decision was made to continue with chemo and complete full 6 cycles.  That means today's session will be 4B or the second treatment of cycle 4 (once a week for three weeks followed by a week off).

I am totally off all narcotics and taking a muscle relaxant called Baclofen twice a day.  While typically used to treat back spasms, it can be used to treat chronic muscle pain due to stiffness and the inability to loosen things up through physical activity.  My plan is to resume pool walking hopefully 3 times a week, incorporating physiotherapy into my routine, and, getting outside to walk or gently play in the garden to help stretch those angry muscles.

You may be wondering about the title of this post and, like me, never really gave much thought to the vast amount of waiting that goes along with a cancer diagnosis.  Someone had brought it to my attention some time ago, which I've pondered ever since, and can only now relate to.  Keep in mind though, it's not all bad, especially when you can turn things over and around and look at them quite differently than in the past.

During a recent lunch with former colleagues, the subject of travel came up and we were regaled with the details of fabulous trips taken since retiring and how the new found sense of freedom allows for such whimsical decisions.  Trips?  Had to cancel a much looked forward trip to Mexico with step daughter Krista and husband Mike Jones.  Any trips in the foreseeable future?  Don't know as such plans need to revolve around treatment schedules.

As our world has been shrinking we've learned it has much to do with waiting - waiting for appointments, waiting for treatment, waiting for results, waiting for information, waiting for outcomes, waiting until the last minute for plans to see how I'm feeling.  Don't get me wrong, life can still be lived fully, just with significantly greater restrictions and limitations on one's self, family, lifestyle and friends, to name a few.  Part of the reverse side of this 'life change' is having the time to ask myself how much do I really miss cocktail parties, networking events, community involvement, volunteer roles, work, and all those things, that while deeply satisfying at times, continued to take me away from family and time with them, and, myself.

What has replaced a full time plus job, social connections and such?  As I relax into this vastly different lifestyle, a new found sense of peace has opened up with lots of time to enjoy the solitude to explore life on a much deeper level.  My old self would have been anxious after hearing about wonderful trips and excursions, wondering what I'd missed and eager to figure out what might come next in our own lives.  These adventures in prayer and medicine have allowed a sense of serenity and peace to settle over our lives, forcing us to slow down the rapid pace of life and truly enjoy the more simple experiences of our existence here on earth.

A good example became apparent on the May long weekend when 4 year old Granddaughter Ella spent Sunday night and Monday with us.  We played 'Easter' at the park down the street with plastic Easter eggs were hidden in plain site around the playground equipment, taking turns hiding and finding.  If it weren't for nature's call to send us scurrying home, who knows how long we may have spent on this version of 'hide and seek'.  Even more importantly, as we were floating stick boats down the creek with friend Brenda over for a visit, someone appeared at the top of the hill with a baby leaving us baffled as to who may have dropped in.  As it turns out, Ella's mom and Dad Matt had planned a surprise that Ashley and baby sister Emmy would drive to Kingston from Cornwall to surprise Grandma who had not yet met 7 month old Emmy (this being her longest trip in the car in her little life).  I'm not sure how to even describe the experience other than some solid concrete sense of love and caring that has left me with an enormous sense of peaceful joy.

It's also been a time over the past couple of weeks to receive love filled messages from our children that warms the heart.  From Nathalie, a note by snail mail (imagine!?) wishing 'Happy 12th Mother's Day as one of my moms in this ever-growing family of ours.  I am so blessed for all of the opportunities and wisdom you have shared with me over the years'.  
A text from Matt 'I can't even put into words how brave/strong/resilient you have been through this entire 'journey'...stronger than I have ever been, and the prayers will continue from all of us.'
From Brooke and family 'Thinking of you with love, all the Belles (family) that a love you.'

The reason for sharing these comments is how precious they become when you have the time to absorb and reflect on the true meaning of such gems.  To have such a sense of validation of the meaning one has in the lives of others, makes life with all its bumps, so worthwhile.

In closing, I'd like to share the news that the counsellor I'd been seeing until a year ago, passed away on the 11th of May as a result of his own cancer diagnosis, just about this time last year.  God bless Dr. George Linn and may he enjoy the fruits of heaven after spending so many years here providing support to people needing his help.

Take care, God bless and lots of love and hugs,
Liz

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