Hope is in the Air

Posted: 06 Dec 2017 03:30 AM PST By Rebecca Ruiz   IgnatianSpirituality.com ® is a service of Loyola Press, a Jesuit ministry. Full article Hope Opens New Horizons ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Just last week I was reading the daily posts sent out by Loyola Press when the one noted above came into my inbox and shook me down to my foundation!  What a beautiful way to describe the recent experience of being healed in spirit.  In the three weeks since coming home from KGH my heart and mind have remained open and joyful.  While the person perched on the rock in the picture cannot see the horizon clearly, they appear open and ready for whatever may come their way. It's very much how I feel now,  welcoming each new day with no idea of what surprises might be in store.  Somehow, in some way, I've been rescued from the dark and often gloomy, slides down rabbit holes since we started these Adventures in Prayer & Medicine in 2012. It's hard to imagine, in August 2017, we crossed the five year mark down this path.   Had I taken the prognosis of at least one physicians seriously, I'd be long dead by now.  After all on June 25, 2013, a mere two weeks after major spinal surgery, I found a note in my medical file which read something like 'patient advised of metastases to liver, resulting in shortened life span, likely less than a year.'  Can you imagine if I'd allowed that to take over what life I had left?  As it was, it took several months to pry loose the armour of fear, regret, sadness and any other 'poor me' emotions you can think of.  Fortunately for me, buried deep down inside there has always been a spark of hope telling me 'You're a survivor'.  Here we are, still beating the odds, and if Pope Francis' words ring true, who knows what developments may come along in the treatment of this disease while I'm busy living the life I was meant to enjoy. On reflection, it took this latest fall down a rabbit hole to finally shake loose the helmet of a lifetime of memories and experiences which allowed the enemy to worm its way into my psyche.  While on the surface I remained cheerful, it was the deep down feelings that could rain on any party I might be enjoying.  Unless you've had such experiences these comments may not resonate with you.  Somehow though, I think each of us has those pesky intruders buzzing around inside of us.  Suffice it to say, this face to face experience, staring cancer right in the eye of its wickedness, God has answered my prayer of not being defined nor identified by the illness.  He seems to have also blessed me with a 'Get Out of Jail Free' card to wipe out any past blemishes and hurts of the past and look forward with hope, regardless of what the future may hold. Another perk which comes with giving it all up to God are the God Winks sprinkled along my path on almost a daily basis.  I've written before about this little book from several years ago called 'When God Winks' by SQuire Rushnell (yes the Q is capitalized), former head of ABC broadcasting.  He writes with the premise there are no coincidences, only God's affirmation we are on the right path.  He encourages us all to keep a 'coincidence journal' and use it as a way to look back on how events unfold from some seemingly fleeting experience.   One such experience comes from a couple of weeks ago when I had been sharing with someone about a local physician/historian who proved the miracle for the first Canadian born saint.  She's from Kingston, yup right here in town.  As we were leaving KGH one day recently, as we passed through a door, a poster on it jumped out at me almost singing about this same physician giving a talk on the same topic the following day!  Oh my, I had chemo scheduled the following day.  Well the next day it felt like we were rushing even if getting chemo is not something one can 'rush' and I made it in time for the talk over at Queen's.  This was through the generosity of our neighbour Hank, since Mike was busy, finally getting to live a little more of his own life since my hospitalization.  So there I was, taped up from chemo, waiting like an anxious child for some superhero to enter the room.  Best ever was being able to get her book autographed (I had actually thought to bring it with me).  No, best ever was getting permission to contact her!  I have a vision of recruiting others to organize a talk for people looking for hope.  Make sense?  I thought so too. There are many, many more such examples but if I took the time to share them in this post, it would be time to write the next one.  At this point I'm not sure where it's going to lead but I know God validated my idea and now I just have to wait to have it present more information about the logistics.  I'm excited beyond measure of the possibilities which exist.  They exist in large part because my brain isn't being drained of energy by ruminating about the dark side of things.  It's really hard to explain, but it's true. Last Saturday set the stage for the season as Matt, Jaclyn, Ella and I attended a Christmas concert put on by Michelle Kasaboski and organized by her (identical) twin sister Paige!  I have listened to this songbird (as the real ones flit by my window this morning) since she was eight years old.  She is now 26 and decided to focus on music as her passion and work.  I've long said when someone has the music in them, they have the music in them and they must find a way to share it with others.  This is definitely one such case.  I was moved to tears when just before the break, Michelle and her musical friend Roy, dedicated the Prayer Song by Celine Dion and Andrea Bocelli to, of all the people in the audience, to me!  As the tears rolled down my face, little Ella reached out, put her hand on arm to comfort me, understanding they were 'happy tears'.  By the end of the performance, Ella herself, snuggled in Daddy's arms was crying a river of 'happy tears', she was so taken by the music.  Don't hesitate to Google Michelle Kasaboski, she will be easily found. We're only a week away from Christmas and somehow I thought I had another week as well so now am wondering what to do with the shortened time line.  If ever there was a year to shift our traditions, this might be it given having lost two full weeks to my hospital stay.  Hmmm, perhaps something to pray about rather than fuss about and let things happen as they may.  After all, of late I've also been letting go of attending functions I previously would have thought imperative for me to attend.  Well the sun still comes up, time still marches on despite me not attending a few events.  I'm sort of surprised how much fun it is to give up doing things which, while fun, may have seemed somehow obligatory, thereby taking the fun out of it. Only being a week away from Christmas has not removed my joy of sending Christmas cards which have to be out early this week so I will sign off by wishing you a very Merry Christmas. A Happy and Healthy New Year and a sack full of thank yous for your support, prayers and kind thoughts. By the time I write again we will either be ringing in, or have just rang in the start of 2018.  Enjoy time with family and friends, 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."

Gravely Ill to Amazingly Well (?!Really!?)

 This most recent slide down a major rabbit hole is unlike any other since starting these Adventures in Prayer and Medicine.  Why?  For the first time I have felt unwell as a result of the illness and not simply from treatment or side effects.  It may seem like splitting 'hares' but has been profound from my perspective.  Up until now it's been a detached sort of relationship with disease, and,  it's been a full 15 months since my body has had to deal with any treatment.  It seems many people think I've been on one drug or another over this past year or more, but nope, nada, zilch, zero in terms of direct cancer treatment. Pain meds, yes, muscle relaxant, for sure and blood thinners, daily, to avoid another blood clot.

On reflection, I know something was brewing even while we were off 'pilgriming' luxury style across Spain, France and Italy. No knapsacks and hostels for us, just comfortable hotels with food and wine aplenty and buses at the ready to round us up to drive to the next point of interest.

Back to reflection for a moment....a small infection in one of my 'chemo' toes was, I thought the culprit for an elevated white blood cell count, but maybe not totally.  Aching in my back, more often than not,  easy to blame on strained muscles which liberal amounts of Voltarin would keep in check.

On Friday, November 10th we attended one evening of a most interesting film series at St. Mary's Parish Centre called Pivotal Players (of the Bible).  The room was cool and drafty which we were warned about but I sat through it, concerned about catching a chill.  Over the weekend things ticked along nicely with a visit with 'Mini Me' Ella which included a sleepover, one of many we cherish.

As Monday rolled along it seemed as though I was developing the flu despite having had a flu shot on October 29th.  Fever joined in early to mid evening, followed by aching muscles and joints, topped off with a chorus of nausea.  I had, on Sunday, emailed the nurse for my oncologist asking if I could have my blood checked due to continued feelings of weakness, vs. feeling tired or sleepy - there is a big difference in my dictionary.  She responded promptly, advising me to have blood work done on the morning of Tuesday, the 14th then carry on to a clinic appointment they managed to fit into an already busy schedule.

Blood work reflected I guess what is considered a 'high' white blood cell count at 36 and flu was dismissed out of hand with disease being the offender of the day, in a big way.  In a calm and casual way, I was advised I was being admitted in order to get things settled down, the cat scan, originally  scheduled for the following Monday, the 20th was done the next morning, the 15th and while all hell didn't exactly break loose, there was ample concern and puzzlement going on around my state of health.

The pain levels in my back were at the top of the charts, hovering around an 8 out of 10 but what was different, there was no relief.  Again, something new.  The sense of my entire abdomen and back locked in a giant kind of toothache constant pain left no position providing comfort of any kind.  It seemed the only way to manage was to remain in a sort of 'locked in' position and try not to move which of course only made matters worse by tensing all those already screaming muscles.

Over the course of the next several days, hard to believe I had a ten day sleepover by the time infection was sorted out, cleared up, chemo started and I was discharged home.  For those who are interested in the medical sequence of events, I will attempt a short overview:

November 14th - admitted with elevated white blood cell count and bilirubin (measure of liver function); started Hydromorphone by IV to bring pain to manageable level; will be starting antibiotics . Concern infection may lead to OR procedure to drain any offending fluid buildup hence NPR order put in place (nothing by mouth - not even sips of water if possible).  Case is more unusual than the norm (what else is new); major concern is pressure on gall bladder from mass in liver.  Cat scan should give more complete picture of what's going on.

November 15th - not sure of source of infection - suspect bilirubin, maybe tumour infected; may put a stent in to check for evidence of infection.  Plan is to get infection under control, drain whatever possible through a fairly complicated procedure for which I was awake (ugh) then start weekly chemo protocol similar to last year.  Treatment once a week for three weeks followed by a week of and start again, 6 times lasting in all about 5 months.

November 16th - drain put in, very little output but continued antibiotics led to decrease in bilirubin; concern infection may be too 'thick' for tube.  One might ask why surgery can't be done to remove entire mass and be done with the problem.  Operation is not an option due to high risk of septic bleed.

November 17th - 21st - ongoing monitoring of white blood cell count, continued IV of antibiotics and apparently every blood culture known to science done to narrow down any possible cause. (well maybe not every but darn close - you know what I mean).  Plan is to stay put for now with antibiotics, lots of fluid by IV and, over the weekend, looking for me to be stronger, moving around and a reduction in the fever.

During this period I was given strict orders NOT to allow any resident to poke my liver due to concern of what might be a potential deadly strike by innocent hands trying to learn their craft by laying hands on patients.  I must say there were only two less than positive reactions - one being indignant, after all they are a 'doctor' and another who couldn't do their work without poking around; well, in this case so be it, try someone else.

To give you a sense of the serious nature of this adventure, one of the docs, very awkwardly asked if we had Powers of Attorney for Care in place as well as directions in the event my condition worsened to the point of having to consider life support.  While it was an easy question for us to answer in principle, yes and yes, for at least a little while time seemed to have stopped as we considered the very real possibility of what could happen.

As I review our hospital diary, I could go on for pages about the ups and downs, back and forths like a virtual game of snakes and ladders depending on decisions and outcomes of those decisions.  It was difficult to have little to no water to drink which was precipitated by whether I'd end up needing another intervention.  I had no solid food, at all, for over a week but didn't really miss it.

A major concern throughout my hospital stay was to ensure my quality of life was protected; it being every bit as important a part of treatment as any medical intervention.  By November 21st it seems we'd progressed a fair bit to the point of being optimistic about the future and considering when chemo would begin.  And it turned out, first session was on November 23rd, my 61st birthday!  While most people grimaced at the thought, I reminded them it was like a 'rebirth', flushing out the past and welcoming the future with hope and gratitude for being in the right place at the right time to receive such compassionate care.  Even as we started chemo, both Dr. Francis and Dr. Biagi were prepared to provide me with the structure guidance I needed to make the decision and proceed, but didn't want us in any way to feel pressured to start one treatment vs. another.  Our decision was based on how the change in the illness is what brought us to this place and so better to start chemo rather than wait for the clinical trial which is not yet even open.  I will be able to transition to trial after full protocol of chemo is complete - remember the 6 cycles lasting about 5 months - uh huh - that one.  We were advised we should have a good sense by Christmas of the effectiveness of the chemo and, yay, let's talk about discharge.

On Friday, November 24th, Mike packed me up light a fragile carton of eggs, avoiding every bump in the road and carefully setting things up at home to allow for maximum comfort.

A friend was here today for a visit and most interested in how we made out both on our trip and our adventures in prayer and medicine.  By the end of our pilgrimage, I explained how yes, in fact we had traveled half way around the world in the hope of some glimmer of a miracle but reconciled how if it was not in God's Will to heal me in body, to please consider healing me in spirit to cope with whatever is to come.  I do believe, He has done just that.  In the darkest nights at KGH, I can only describe how I believe God came and wrung me out like an old washcloth, releasing the past toxins of shame, pride and any other negative emotions attached to my body.  Since coming home, I feel lighter and ever more joyful than I have, ever ? (maybe??)  I'm feeling amazingly well and can hardly believe I've had chemo once a week, the last two weeks running.   We'll see how this week goes, after chemo this Thursday, but things sure look promising from where I'm looking out at the world.

As I close, I'd like to make a similar comment to my Dad's when he spent the last three months of his life in KGH.  The medical care was most kind, caring and compassionate, but truly the best service he'd received was the spiritual care.  I had someone gently volunteer each day to offer prayers, blessings and communion during my stay.  I also had the Sacrament of Healing administered at least twice.  The greatest sense of a miracle having taken place is through my belief, and many others, in the power of prayer.  There is nothing quite like it.  The more open we can become, the more obvious it becomes on just how God can help us in the worst of times, in ways we'd never imagine.  Try it!  You'll like it!

Take care and God Bless.  Thanks to all of you for your kind words of encouragement and support.  Until next time,
Lots of love and hugs,

Liz

dobbsjones@gmail.com

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

WANTED IMMEDIATELY - Help, Support, Prayers & Positive Energy

Once more, I INVITE, no, NEED your help as always, and, especially, tomorrow, Thursday, November 23rd,  2017.   I am in KGH, and will be for the foreseeable short future.

For those of you needing and wanting 'only' the medical facts. I was admitted on Tuesday, February 14th, due to an infection which turned into a huge sleuthing adventure for the gyney oncology team.
Bottom line is bloodwork, ultrasound, and cat scan led only to more questions than answers.

A shower of antibiotics and other medical combos, helped recalibrate many of the medical monitors and mostly pain, into huge, short term improvements. All to the point of agreement among all team members to administer first chemo treatment sometime later today, since the clock has officially rolled to Thursday about an hour ago.

Just found out things continue to chug right along so gotta go now, please send all you are able to and I promise to check in on a more routine basis very soon.

Take care, will be back ASAP and thank you in advance for your help, support, prayers and positive energy,
Love hugs and God Bless,
Liz

dobbsjones@gmail.com

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

Bridging our Beliefs

It's scientifically proven jet lag is worse when travelling east than west.  That means it's proven scientifically I respond in the opposite way.  Personally I found it fairly easy to adjust on arriving in Spain, having a power sleep, a shower and ready to go.  Now, a week and a half after our return home, I'm still dragging around.  Ok, I do admit there's something to be said for the highly increased pace of activity, together with the sheer number of staggeringly beautiful scenes bombarding our senses for 10 days.  Run here, go there, oh picture after picture, wait, go back, take one more. But did I have my camera set to identify where we were?  Oh no, didn't even realize until after we got home.

The food in Italy is certainly to be enjoyed as one does a marathon of any kind.  You know the drill, course after course, wondering when it might all end, bottomless glasses of wine taken in moderation, given the pace of our tour.  After all, you dare not be fuzzy the next day when facing history head on.  Nothing like home where considerable time might be spent preparing a meal after which, sit, eat, clean up, all in the span of about 15 minutes!  Fortunately with the walking and climbing, mostly stairs rather than hills, not much of the fat remained glued to our hips.

Our hotel in Rome, while in a residential area, was a short drive to Vatican City.  In just one day we had a personally guided tour of the Vatican Museum, the Sistine Chapel including Michelangelo's restored mural of the Last Judgment, followed by the breathtaking beauty of St. Peter's Basilica.  On this trip there was no such thing as 'just another church'.  St. Peter's in fact, is known to be the world's most beautiful church, built on the site where St. Peter was martyred.  Even as I type these words I pause to take a deep breath, much like I did when we entered St. Peter's Square.  All I can say is, it feels different, it feels special, it feels sacred and spiritual.  I feel so honoured to be guided to see this most holy place where hundreds of millions of Catholics, and millions from other faiths, or none at all, worldwide turn their attention when in deep need of hope and encouragement.  From there we visited St. Mary Major, one of the oldest shrines dedicated to the Blessed Virgin and one of the 4 major basilicas in Rome.

For me, attending the Papal audience, along with Pope Francis' 15,000 or so other closest friends, was the highlight of the trip.  We had VIP tickets which meant we were able to enter a seated area.  Rather than feeling the need to work our way to any specific spot, we remained as a group sort of in the middle, meters away from the closest railing where Pope Francis cruised by in his open Popemobile.  Apparently one had to be in line before 6 a.m. to hope for one of the cherished perimeter seats.   It was overwhelming to be breathing the same air Pope Francis breathes, to catch a glimpse, oh then a good look and even a photo or two of the most popular Pope, I'm guessing in modern history.  Many, many school children were in the audience, many early to mid teens.  We sat a few rows behind one young person wearing a sweatshirt which said, on the back "I need a little reassurance today".  Weren't they in the right place at the right time?  Another youth literally buried himself inside his hoodie, at one point coming out only to pass around an e-cigarette.  I decided then and there, he was someone I would pray for rather than becoming annoyed with his behaviour.   Large screens allowed us a good view of the ceremony and fortunately for us, we heard a summary of the Pope's message in English.   While one needed a ticket to attend the weekly audience, it's printed on the front:  'This ticket is entirely free'.  At the end of the event, we all joined in singing the Our Father in Latin (found on the reverse of our ticket) and, finally, received the Papal Blessing.

After it was over, one could overhear many people discussing where they might go next, what they might see or do.  In our case, we decided, at that time, to savour all that had just happened, and 'just be.'  We didn't go anywhere.  We didn't do anything.  We absorbed the spiritual magic in the air, soaking up the positive energy of the experience.  In some ways it was surreal, but truly one of those times where no number of photos or videos looked at from afar could replicate the feeling of being present in that moment.  We were touched by the enthusiasm of so many students, standing on their chairs, clapping to a rhythmic beat while repeatedly chanting "Papa Francesco".

As if the Papal audience wasn't enough for one day, off we went to visit St. Paul Outside the Walls, another of the 4 major basilicas.  Shame on me for not having taken history through high school.  I may have known a little more about such places which date back centuries.  On a humorous note, my son Matt, majored in History and Geography in University!  He was fully familiar with all the places I tried to describe.  Suffice it to say, I'm not trying to provide a historical essay of the places we visited.  This Basilica in particular drew my attention by the fact the local church we attend here in Kingston, is St. Paul the Apostle.  The sheer knowledge of being in the sacred place where St. Paul was buried somehow brings him to life in my heart and mind.  Right in front of us lies historical evidence St. Paul really lived, born a Roman citizen, author of many letters of the Bible and having had personal first hand knowledge of Jesus.

Without going into detail after detail like watching 'slides of our vacation', I'd rather share how my  overall experience was one of cementing my faith in a way that may hold up for time immemorial as it has for the people who lived in the days of Jesus.  A worn out comment, I'm sure, to Mike throughout the tours was "How can people not believe Jesus was with the overwhelming amount of historical evidence in front of us sharing the same stories we continue to read and believe."

In the last couple of days of our tour of Rome, we had a full on tour of the Colosseum, which I could go on about for pages.  Estimated to be the world's first major arena, seating upwards of 60,000, built in 8 years, could go from full to empty in a matter of 15-20 minutes thanks to 60+ public entrance ways, a fully retractable dome roof used at the pleasure of the Emperor and on and on.  Construction began in 72 A.D. and completed in 80 A.D.  I couldn't help but ponder, 'And we think we're so smart!?

A few places we could only see by doing walking tours, up and down the same cobblestone steps that have been tread upon by centuries of citizens, pilgrims, tourists and the like, oh if only they could share some of their stories of what went on above them.  It was this way we could delight in the Trevi Fountain, the Pantheon, rebuilt in 118 A.D. after a fire and still mostly intact (imagine!?) and the Spanish Steps, a community gathering space, built for that reason.  One wonders how one of the most visited cities in the world has been able to mesh not only old, but truly ancient, with the new(er).  How do 5 million+ people share this relatively small geographic area, keeping things intact, respectful of the times and lives before them?

What I do know is we've returned home changed by the experience, definitely deeper in our faith and more settled in whatever God's plan might be for our lives.  I wouldn't be truthful if I said I didn't go halfway around the world hoping, in some small corner of my heart, for a miracle.  To come home free of illness.  No, but what I have reconciled myself to, is if it's not in God's Will to heal me physically, may He heal me spiritually. May He give me strength to accept what's ahead, with dignity, humility and grace.  It will mean taking definite steps on my part to release much of the past, accept my physical and emotional limitations and slow my pace from constant revving around 4000 rpm to a slow idle and, most importantly, giving myself permission to do so.

An oncology appointment on October 23rd brought news of the clinical trial everyone is so excited about, it hasn't opened yet.  In fact, the host hospital, Princess Margaret in T.O. has not signed the contract yet; hopes are to have it complete by year's end.  Sigh.  But ok.  I've held my own and then some through our travels and will now spend much quiet time recalling and reviewing the many fleeting thoughts I had, always at an inconvenient time to capture them in writing.  Maybe they will come floating back like clouds in an otherwise blue sky,  if I remain open and quiet.  Our plan is to wait for the clinical trial in the hopes it has the desired effect of providing quality of life for the foreseeable future.  And so, until then, we will live every day well, God willing, until we're not.

I received word today of a cat scan scheduled for November 20th followed up by a review with the oncologist on December 5th.  Deep breath.  Ok, I can deal with that.  Only 3 weeks away. Another deep breath.

Until next time, let's all keep breathing,
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."

Hope Across the Ocean

I start this post at 10:00 a.m. Sunday morning.  Why is the time of interest you might ask. Well as I'm tapping away, you are most likely still snuggled comfortably in bed because it's only 4 a.m. for you. We are back on the tour bus, returning from Lourdes, France to Madrid, Spain.  Driving through the Pyrenees Mountains, imagining Julie Andrews leading the Von Trapp children in song to the Sound of Music.  Thirty four weary pilgrims, resting from a full day and a half of following the steps of Ste. Bernadette to whom the Virgin Mary appeared 18 times from Feb 11th to June 16th 1858.
We started our visit to Lourdes by walking in a candlelight vigil at 9 pm Friday night; thousands of believers in God, prayerfully honouring Virgin Mary at one of the sacred places around the world where the Mother of Jesus chose a young, ordinary girl to be her witness to the world.

Now, 149 years later, the Grotto at Lourdes attracts more than 10 million pilgrims every year from February to October.  If ever one needs a booster shot of hope, just google this special place.
There are more than 1300 volunteers on pilgrimage to Lourdes annually, dedicating an amount of time of their lives to helping others at Lourdes.  Many, many are young girls likely high school age, dressed in white with a navy top and veil giving one the appearance of student nurses. They are though, in my own mind, a reminder of my years as a candy striper at our local hospital. The care and compassion shown to the hundreds of invalid and disabled was heartwarming, cementing another brick in the wall of hope for the future of our youth.

I mentioned last time how I made a decision to hold out for the much promised clinical trial on our return, rather than start chemo by undergoing three treatments before venturing out. I know already, regardless of the eventual outcome, I made the right decision.  Thus far, I'm doing the best I can, in an effort to keep up with the group in general.

In the end, the most I can pray for is total acceptance and trust in God's will for my life. Many times before this pilgrimage I've pondered what is, above all, most important to me.  It comes down to the same thing, perhaps said differently, is to trust wholeheartedly in God's plan for my life and to stop wasting priceless energy on the 'coulda, shoulda, wouldas'. Those things are only earthly means of concealing the real longing in our hearts, which is to have a relationship with Jesus.

That brings me to another point where, on our initial flight from Toronto to Madrid, a family of parents, mom in law and four children were seated around us with Dad next to My Michael.  We learned they are devout Christians, he was raised Catholic, now attending a non denominational church in Orlando, Florida, their 4 kids are home schooled by Mom based on Biblical teachings, they travel once or twice a year and include missionary trips with the family in the mix.
It was truly amazing to watch their 'witness in action' as Dad described his 'birds and bees' talk with his nine year old son, based on the principle of stewardship, that being caring for those gifts God has entrusted to you.

There are so many layers of insights and inflections so far along this journey, which I hope to be able to share in more detail another time.

I will say goodnight as it is now after 11 p.m. to tell you I am holding my own, remaining hopeful and will be back in touch well after our return.

Take care and God Bless,
Love and hugs,
Liz

dobbsjones@gmail.com

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

The Other Side of Decisions

Today starts as one of those days, I've ever so grateful to not turn on the TV during the day.  I heard the news from a woman standing in front of me at Costco as we booked in to have an oil change on our cars.  It seems to me we are entering a period, or to tell the truth are in a period, where many of us protect ourselves by turning inward from the atrocities of the world around us.  It's not to ignore reality, rather it's to narrow our field of vision to see what's good in the world. Some days it seems to be the only way to hang onto hope.

I've been feeling better since having the blood transfusion on September 6th and despite the rumblings and tumblings in my abdomen, I'm blessed to be feeling as well as I am.  One of my coping strategies is to keep my hands away from poking and prodding, mentally trying to measure the changes going on.  I remain in email contact with my new favourite nurse, Lou and had repeat blood work done Friday to ensure my hemoglobin isn't sliding again.  Tomorrow we meet with my 'Symptom Doctor', to assess and address any issues.

As Mike and I discussed though, it's too late for any major intervention at this point.  We jointly took the giant leap of faith in deciding not to start chemo before our pilgrimage.

Through discernment, discussions with our caregivers, prayers and diving guidance, we have made the choice to receive support leading up to our departure.  On our return, we have an appointment with Dr. Biagi, leader of the clinical trial, on October 23rd with the hope the trial has or will open at any moment.  Some people have asked if it's in Kingston.  Yes it is, another chance to offer thanks.

Just before I leave the medical side of our adventures, I'd like to let you know, if you haven't already realized, these ramblings and my appearance, my outward positive attitude, while natural and authentic, don't come easily.  It's hard work digging down inside, and to use a phrase I quite like, turning over the 'crap of the past' and use it for fertilizer to grow a positive outcome of all this.  One mini outburst was to Fr. Leo whom I still stay in contact with at least by text since his retirement.  Here is part of my message to him, "....my plan is to participate in id (clinical trial) with the main goal of helping others through the research.  I'm actually sick and tired of living in fear of this illness and pretending not to be."  Guess what!?!?  Letting off that little bit of steam has simmered my emotions down to the point of gently bubbling along in my daily life.  It seems to be the only I can go back to, other than the barrage of prayers coming my way, to credit for this new found sense of calm in the midst of this major decision.

One other insight I've gained from all this, especially what I view to be a quantum leap of faith and decision making, is by stamping my feet, hands on hips and saying "NO", I'm NOT going to choose something, out of fear of what COULD happen, I know will decease my quality of life only weeks before going on this trip of a lifetime!"  The nugget in all this, is to RELINQUISH CONTROL, which is at the root of some of my most damaging emotions.  Each time I reflect on it, I'm going back to meeting, my almost life long enemy, face to face.  Another simple, but brilliant insight, in its simpleness.  Confirming once more, we don't get it, until we get it.  On our own.  In our own time and in our own way.

As I ponder these thoughts, it's like jumping off a cliff, trusting your parachute will open, which it does, allowing you to enjoy the scenery before an ever so soft landing, wondering why you had any fear in the first place.

We picked up our travel documents late last week, and inquired during our meeting about the insurance we purchased through the Tour Company, Collette.  While we'd never heard of them, just goes to show our depth of knowledge of the industry.  They have been in the business for 100 years!  No wonder they do their own insurance underwriting.  We were assured there was no problem.  My handwritten notes from the presentation I attended back in March, I was reassured by the comment 'stable for 90 days prior to application for insurance', in the case of pre-existing conditions like mine.

It's finally becoming a reality, we are travelling a week from tomorrow!  Being a traveller who likes to 'just show up', 'tell me the details later', and pack about the day or so before, I'm surprised at my desire to look up each of the stops on our tour.  There is an innate interest in learning at least a little bit about each point of interest.  At one of my virtual stops, I believe Lourdes, a sense of peaceful joy came over me covering me with a blanket of total caring and worry free sense of calm.  More to go and I look forward to more emotional reactions.  My friend Brenda suggested this trip could be a spiritual awakening of sorts, or reconciliation.  The word 'catharsis' came to mind although I had to look it up to see if it's what I really meant.  It's certainly close enough, by saying it's a spiritual release of suppressed emotions. I can almost feel the meaning.

The last couple of weeks have included time with family as my friend Martha and I played 'Kitchen Fairies for daughter in law Jaclyn, and 'Purging Fairies, for daughter Brooke.  They were both thrilled with the results of us flying in, unpacking cupboards, drawers, boxes and ordering them around as only fairies can do.  It felt more like playing than anything else and, while at Brooke's, we each had to take a turn at Matilda's Hair Studio which consisted of a tiny stool to sit on in the kitchen while she brushed our hair and affixed tiaras on our coiffed dos as she stood back, obviously very proud of her accomplishments.

We enjoyed brunch together with Matt, Jaclyn, Ella and Jaclyn's parents to celebrate Matt's 34th birthday!  For many people family gatherings are an every weekend, automatic thing they do with one, two or many of their siblings and parents.   I've watched, over the years, how rich and fulfilling a strong family connection can impact an individual's sense of self.  Given our relatively small families of origin here in Canada, we are growing in this wonderful tradition others have lived for so long.  In fact, we were discussing how Ella, has nine 'grandparents' given her blended family whereas I'd never met any of my grandparents and Mike had only met one and then only once or twice.

My next post is scheduled for the day we take a coach ride from Lourdes, France, back to Barcelona, in order to fly to Rome the following day.  If my plans bear out, I may be able to do an update on my iPad as we travel.

I will leave you now, wishing you and yours a Happy Thanksgiving as the passing of the days picks up speed leading us into this potentially life changing adventure!

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."

Decision Making by Trusting Whispers

With all the wild weather going on around the world, it looks like Mother Nature smiled on us, as she turned back the page with a stretch of summer days, June bugs and all.   Is this really unusual though?  Not really, as I recall the day we brought our son Matt home from the hospital on October 3, 1983.  A day much like today with a soft breeze blowing.  It's time to soak up the sun, give gratitude for our safety and enjoy each day for all it's worth.

The prayer and medical adventures continue, with another appointment with my oncologist, Dr. Francis and Dr. Biagi, leader of the upcoming clinical trial.  It turns out the clinical trial is not proceeding as quickly as they had hoped.  They are now aiming for mid to late October.

A nurse angel, my new best nurse ever, Lou, whom I've only met by phone so far is helping me monitor my health every few days to determine if I am best to start chemo Sept. 19th, or, to wait, go on our trip and start the trial on our return.  If I start chemo it’s three weeks on, one week off for five months.  I would get the first cycle done before we go then restart on our return but would have to complete the full protocol of five months before considering the trial.  I could go from chemo to trial seamlessly.  It was made very clear, if the chemo is effective, I will not be taken off something that works to be put on something that might work.

I had brought the results of the blood work my family doctor had ordered for review which indicated my hemoglobin was at 84.  To put it in context, my doc had told me normal is 120, mine is historically low so she would settle for 100 but if it was 90, she wouldn't be pleased.  No  wonder I've been feeling so weak and fatigued.

At the end of our conversation we agreed on next steps including:
- Further blood work to be done immediately following our appointment to ensure a proper match.
- Arrangements would be made to attend the chemo unit for a transfusion which occurred the next day.  The goal is to reduce the level of fatigue.
- Dr. Biagi would confirm, by the following week, the date the trial opens.
- Someone would be calling to check in with me the following week to see how I was feeling.
- If I feel ok after the transfusion, we are aiming to hold off any treatment until clinical trial opens in mid to late October.

Later that same day I received a call to be at the Chemo Unit for 11:30 the next day.  I use this example as a reminder of how blessed we are to have the level of health care so close to home.

Off we went, a reminder of times past, like the routine over five months last year of weekly visits
with Tess as my chauffeur and 'in house nurse', meeting Mike there (remember he was still working then), and making the best of the situation.  

Last week I had a bright, clear view of the lake as I was prepped and poked, receiving two units of 'packed cells' over the course of four hours.  I know you're likely wondering 'Doesn't the body only hold a certain amount of blood?', 'Do they have to take some out to put more in?', 'Are packed cells concentrated like laundry detergent - a little goes a long way?'  Well in fact the body can absorb extra blood and the red blood I received had the 'liquid' taken out and so in a way it is concentrated.

The next couple of days were sleepy tired rather than weak tired.  Nurse Lou, confirmed my own intuitive cause of this change in fatigue.  I'd been told I should perk right up after the transfusion, my own thought was the body must have to take some time to get used to this new enriched formula coursing through its veins, which is correct.  I can't say I'm back to the Energizer Bunny on steroids, and no longer have that inclination.

The important conclusion I've drawn is while it took a few days to adjust,  I said to Mike as I have in the past, “If I didn’t know better, I’d think I was well.”

As of today, Sunday, September 17th, my Prayer Priority is "If it is in keeping with God’s Plan, I pray to stay well until the clinical trial opens, go on Pilgrimage to Barcelona, Lourdes and Rome Oct. 10-20 then start trial on our return home.

I'm somehow driven to take this very major leap of faith and trust in God to hold me safe in the palm of His hand until the clinical trial opens.  Coming to this conclusion is the result of prayerful discernment, a review of many of my own beliefs and, most importantly, truly putting my life in God's hands.  I cannot, in writing, begin to describe the hope filled challenge this decision is in my life right now.  It's almost like standing on the edge of a cliff with my own worst nightmare closing in behind me, and taking that final step with the full trust of being kept safe during the free fall.  In my heart I believe these next few weeks could be life changing.  Perhaps not in obvious external ways but rather internally, in my heart and soul, where I can live in peace knowing God truly loves and cares for me.  Tucked in the back of my mind of course, is if this is not in His plan, we will simply have to accept whatever Plan B might be.

One of the factors in my decision making has been the training provided by my caregivers throughout these adventures, which has been to advise them if I've felt unwell for two weeks.  Despite 'slight progression, well maybe progression' and feeling more lumps and bumps in my abdomen, I feel well after the transfusion.  Why then, would I trade feeling well for not feeling well (a given with the fatigue and side effects of chemo) a mere four weeks prior to a major trip which is only ten days long?

And so I plan to bravely walk forward, living every day well, listening closely to the messages coming my way like those giant lit up billboards on the 401:

Those of late have been centred very much on quiet stillness and trust which is a forever issue for me.   ‘In quietness and trusting confidence I find strength in you Lord.’ (Isaiah 30:15)

Christ speaks to the faithful.  Blessed are the ears that catch the pulses of the Divine Whisper (Matthew 13:16-17, Psalm 85:8)

I believe when it’s our day, it’s our day, not one minute sooner or later than planned by God.

Decisions only affect the quality of the journey, not the end date.

Trust and waiting are inextricably linked.

When we listen to Holy Spirit, we can understand how God is present in our lives and make good decisions.

“You have to go through this, even now, but you’re going to be ok.  You have lots more work to do.”  (a drop by visit from someone I’ve known for years who stayed only long enough to deliver that message)

I'm not sure why I need to include a recent experience right here but include it I will.   A week or so ago, while perched in my own spot overlooking the dead tree which has become nature's 'connecting airport' for all sorts of birds,  a tiny green hummingbird came face to face with me right in front of the window, less than three feet away.  A good sign, to be sure!

In closing, I share a couple of examples of how I am learning to listen to the 'whispers'.  

On September 5th, while going through emails and sorting through details that lead me down paths I never knew existed, I came across a message from someone who has frequently shared feedback on my blog posts.  Not having heard from them lately, I dashed off a quick email to ask if all was ok, asking to simply let me know.  Within a few hours I received an outpouring of reflections as it was the fifth anniversary of the loss of their spouse!  I treasure such messages having been able to positively affect someone's day by listening to the whisper and simply touching base.

On the 9th of September, again on a winding path of email and internet searching I came across a Go Fund Me page for someone who had shared the background story of the individual in need of help.  Since their attempt to be in contact, the person felt no updates were being posted due to conflicting family issues.  When I finally found the site I saw there had been no update for at least two months, I simply sent a message asking for more recent information as I was considering a donation. (it's only through this page someone  can know what's going on.  Within an hour or more, an update had been posted!  On making my donation I made it clear the only way I even learned of their need was through someone.  Whether it helps mend a wounded relationship is not for me to know or to think it could be that easy. Even still, wow, Holy Spirit certainly heeds the call to action when we need His intervention.

In order to live a more peace filled, contented life I will continue to spend time in quietness and trusting confidence, knowing our Lord is giving me strength.  

Enjoy these gorgeous days and remain open for your own whispers.......

Take care, God Bless,
Hugs


Liz

dobbsjones@gmail.com

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

Caught in the Web of Enthusiasm

The last couple of weeks have been a see-saw ride.  Up one day, down the next in terms of next steps in my medical adventures.  We have travelled from the place of 'slight progression of disease',  in late July to  'No, not really, as overall size unchanged' on August first, followed by 'Well maybe', finally to  'Yes progression'. 

It was not until August 29th we learned about 'Yes, progression' which put into context the discussions during clinical trial consults.  It became clear the individuals providing the information believed we were aware of the current status of my health.  More on that shortly.

Clinical trial consults on August 22nd included a brief stop at Radiation station.  Trial has been open for a couple of years in eight centres across Canada, Kingston now joining in.  Change in past view, which was radiation could not be used on the liver.  With kind and caring compassion, I was advised by Dr. Allison Ashworth (who I love), I am not a candidate for this trial, having had radiation on my back in 2013, which would have included exposure to the liver, precluding my eligibility.  Also,  radiation is not being considered now as my overall quality of life not being impacted by disease.  It will though, be kept 'in the bank' for future use if and as needed.  Best course of action is to consider Chemo trial. 

As we waited for the next consult, I felt a sense of relief at not being faced with a choice between the two options.  It was made for me, just as I had prayed for - a sign, in a way I would understand, of which trial to consider.

We met with Dr. Jim Biagi (who I also love) at the Chemo Platform, who started the discussion by sharing he had reviewed my medical history and has heard about my case from others many times.  He quickly moved to options available at this time (again, we were wondering why we were hearing about options when we were here to learn about the trial.  Remember we were still at 'No, not really').

They included:

- Carbo (reduces fluid build up but doesn't help with sold tumours)

- Carbo Taxol (cocktail I was served during first phase of chemo 4 times over 4 months in early 2013)

- Weekly Taxol (last year's 5 month protocol with 17 servings of one drug)

- Clinical Trial - very excited about, have used in ovarian patients for a number of years with success to the point of it becoming the standard of care.  It includes what's called a 'Parp Inhibitor' and they are anxious to get started.  Sadly, there has been no progression in treatment of Endometrial in the last five years, to which I responded, 'Then let's get started!'.  

- Watchful Waiting - which is what we have been doing for the past year.  Remain mindful, have regular check-ins, leave things alone in the absence of symptoms.

Needless to say we got caught up in the enthusiasm about the trial and expressed willingness to participate.  If you can imagine yourself in grade school, being so confident of an answer, you wave your hand violently in the air, almost coming off your seat in hopes of being asked.  It's about how I felt. I even blurted out how I would like to be considered the first candidate.

My expectation of being provided with copious amounts of reading material while waiting to get on the train to Clinical Trial College was quashed when we were told he is only going to be meeting with the drug company that same afternoon.  He would be away for summer vacation and while  willing to have my regular oncologist provide me with further details, we learned later, he really wanted to be the one to personally take it to the next step.  We agreed to set another appointment for the following week to review options with my oncologist and help make a decision.

It became clear how enthusiastic everyone was about the opening of this new trial.

We met with Dr. Francis on the 29th to review the previous week's travels through consult territory.

It just happened though, I had an appointment with my 'Symptom Doctor' immediately before my oncology appointment.  It was at that stop on this latest adventure we felt like we'd been derailed by being provided with a copy of the cat scan results.  It had the most complicated, medical terminology details of any scan I've received, making it hard to decipher.  Bottom line was while it did confirm slight disease progression initially, the overall impression was 'Progression of metastatic disease in the liver' (I am deliberately omitting a few details). We were asked if scan results had been reviewed, agreed they had, but without such detail and we had not received nor seen a copy.  It's times like these we need to remind ourselves we are not the experts, we need to stand back and look at the whole picture. Most importantly to reign in the imagination.

We left 'Symptom City' in a much subdued frame of mind, thankfully not being left waiting at the station for very long before heading in to see Dr. Francis. 

She agreed she had not shared certain specific details of the scan but I can't recall, nor have notes as to why it was the case.  My intuition says, it's because she was looking at the whole picture and, as such, was concerned about some of the changes but remains optimistic.  She also concluded, the question remains 'Do we do something now.' Whatever we do, it should be now.  Her message from Dr. Biagi was he wanted to start when he returns and we can expect to hear early next week.  She too is excited by the clinical trial and highly encourages going that route as a first choice, followed by Weekly Taxol should the trial, for some reason, not be an option.  I have made every effort not to become overzealous without more specific details of what the trial entails, confirmation of my eligibility, and being handed a ticket to get on that train!

Next up was an appointment with my family doc the next day, August 30th.  She has remained my calm in the storm,  my padding at the end of the rabbit hole, my overseer when the trails get overgrown with unknowns.  

We reviewed the details of our latest adventures, and, sure enough, she already had copies of reports, scans and details and most willingly reviewed as much or as little as I needed to regain my perspective.  I'm always filled with a sense of calm as she pulls her chair over, leans right into my space and with those totally focussed blue eyes, gives me the most rational explanation of any problem or issue of concern.  It went something like this.  We know this thing isn't going away, but in the midst of it all, palliative is becoming known as managing a chronic illness.  The most important thing to remember and refocus on is how I am feeling - now - not comparing to anyone else, not reading into numbers, or any such diversions.  She described much of what I have been working so hard on - getting up every day, reviewing how I feel and move on from there.  Live every day as well as you can.

She also confirmed how any change, including the change in the denseness of the mass in my abdomen must be considered as bad (which Dr. Francis had confirmed the day before).  It's unlikely, barring a miracle, any improvement will be experienced without intervention.  It's not like this thing is going to get better on its own.  True and I agree.  She has heard of, but not experienced through her practice, any miracles, but does not dismiss the possibility.  I shared my view of having a predetermined number of days, to which she responded we could have a good philosophical conversation some day as she had written a paper on the omniscience of God (all knowing) as it related to free will and other such details based on the book 'Paradise Lost'.  Getting back on topic, we agreed to have blood work done given my ongoing sense of fatigue and weariness.   It's a given my hemoglobin has always been on the low side, she reminded me it should be 120 but is ok with it being over 100.  If it comes out at 90 she will not be happy.  We left on the understanding no news is good news, but if any issue, I can expect to hear from her.  No kidding, I remember the time a couple of years ago when she called me from the airport to advise me about the results of blood work at that time.  Wow, what an angel disguised as a family doc!

By the time I got home there was a message from the Nurse Practitioner for my Oncology Team to call.  After nearly 45 minutes on the phone, we were off on yet another adventure with the hope of directions being clarified on Tuesday, September 5th.

I needed to bring her up to date as she'd not been directly involved of late.  She'd been on her own travels with others in Cancerland.  What she did advise was the clinical trial is not opening for two months.  Whoa, it felt like the see-saw firmly thumped the ground with that news.  It seems like when clinical trials come along, especially one like this one, they get very excited and almost immediately start looking at every patient with a clinical trial lens, assessing their eligibility.  Would she be a good candidate?  Would she benefit from participating?  Certain patients come to mind and it seems the enthusiasm takes over the details as they just can't seem to keep quiet about it.  The comfort in that, I suppose, is being proactively thought about.  

What I appreciated most about the conversation was being provided with an overview from an expert on how we move forward.  She clarified she would discuss things with my oncologist in view of the news of the delay in the clinical trial.   As well, standing back looking over my whole case, she's not sensing urgency to start treatment right now.  She feels we have the time to review all factors and make a good decision in terms of next steps.  After all, things could have been there for months and it's only now that we're investigating, we're finding something.  As has always been the case in my adventures, the question is asked, 'When we do a test, what do we do with the results?'.  And so, here we are. I was encouraged to remain optimistic, and once I pull out all my 'go to sayings' and beliefs we are in a good place.  Make every effort to look forward to the future with a sense of wonder and surprise.

Friday morning I received a call setting two appointments for Tuesday, Sept. 5th with Dr. Martin, oncologist,  followed by Dr. Biagi.  The adventure continues.  On that note I will sign off and wish everyone the best for the rest of this long weekend.  May you enjoy good health and peace as we head into the beginning of Fall.

Until next time, with lots of hugs,

God Bless,

Liz

dobbsjones@gmail.com

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

p.s. A couple of readings from this week which just happens to address suffering:

James 1:12  Blessed is the one who perseveres under trial because, having stood the test that person will receive the crown of life that the Lord has promised to those who love Him.

Romans 5: 3-5 Not only so, but we also glory in our sufferings because we know suffering produces perseverance.  Perseverance, Character and Character, Hope.  And hope does not put us to shame because God's love has been poured out into our hearts through the Holy Spirit who has been given to us.

Happy Labour Day Weekend - Update to be Posted over the weekend......

What a Difference a Day Makes

I commented last post with regard to a shift and change in my abdomen along with a new pain in my side so severe I couldn't lay at all on the left.  The whole shift just happened to start the evening my oncologist called with results of the cat scan.  Imagine, to my surprise the pain subsided the evening of our appointment to review the results of the scan.  Imaginary?  Don't know, just glad it's gone.

On arrival at my appointment on Aug 1st, my oncologist seemed upbeat and friendly while in my own mind I'm wondering how she could behave this way when in the previous week my imagination had me taking gigantic steps to get my affairs in order!  Here's the results of the discussion to the best of my recollection using paraphrasing as needed:

Dr.: 'We had a long conversation about you this morning. (at conference held every Tuesday morning to discuss specific patient cases)  You're a very popular patient. (having worked with a number of them in my position with the hospital foundation makes sense).  The radiologist clarified the scan should not be reported as disease progression.  It hasn't grown in overall size.  The properties of the mass are shifting and changing from part of it being more cyst like to becoming more solid. (no comment on whether that's good or bad; didn't think to ask at the time).

We know you consider yourself fatigued but we (the docs) all rated you as '0' (vs. the 1 I score myself as not feeling like my normal self but can still do most things on my own).  We determined you are active and do more than many of our well patients.  (sound familiar? Ya, did to me too)

There are currently two clinical trials open.  One using chemo, the other radiation.  We would like to set up consult meetings as soon as possible, possibly as early as the Tuesday after the long weekend but definitely as soon as possible.We'd like you to sit down with Dr. Jim Biagi about the chemo trial and Dr. Allison Ashworth about the radiation trial.  They should take about an hour each after which we can sit down and help guide the final decision.  If we decide we'd like to participate in a trial, the time is now.  (we concluded one must be relatively well to be eligible)

(I can't recall how I responded to the possibility of being able to participate in a trial) Dr.: We never expected to get to the point of being able to have this conversation with you. (August 3rd was five years since diagnosis)

At the conclusion of our appointment as we stood to leave, the doc and I gave one another a very long, sincere hug during which she whispered in my ear 'it's going to be ok'.   What a relief! How exhilarating!  While walking down the hall together, she commented on how she doesn't know 'how I do it'.  In my effort to give credit where credit is due, I almost immediately responded by saying I have a very deep faith. She simply nodded in agreement.  It was a perfect moment to share my theory about how God predetermines the number of our days, and how free will only affects the quality of the journey.  Her reaction was one of 'aha', had never heard it that way and how it made sense, making us responsible for ourselves. Yes, and takes away the many coulda, shoulda, wouldas we use to beat ourselves up with in terms of affecting the length of our lives.

Since then we've received notice of our appointments which will be on August 22nd.  An auspicious day in more ways than one.  The first way is we will celebrate our 8th wedding anniversary that day.  Second, August 22nd also happens to be the Feast of the Coronation of the Blessed Virgin Mary.  It is also known as the 'Queenship of the Blessed Virgin' as the Mother of Jesus.  Between now and then we will pray fervently for guidance and signs in ways we can understand, the decision that is best for us in accordance with God's will for our lives.   It's easy to make up our own minds and try to influence the outcomes we'd like, which, of course, we can't possibly control.  That's one thing I've been learning and practicing along the way of these adventures.

Today I received notice of the followup appointment with my oncologist which is now scheduled for August 29th.  Suffice it to say no decision will be made at least until then, giving us time to discern the information we receive on the 22nd.  In the meantime I will enjoy every day to the fullest and fill my tank of 'happy thoughts and memories' to draw on as needed in the future.

It's interesting to step back, even just a little bit and look at the larger picture over these past couple of weeks.  By waiting, as patiently as possible, and trusting the outcome, as well as possible, how activities and experiences take shape like pieces of a puzzle which fit together in perfect unison.  What August 3rd turned out to be, as well as the 5 year mark since diagnosis, a day of receiving one of the clearest signs of guidance from God for at least the day, and a few since.  What are you talking about you might be thinking.  Well let me explain.

It was the first mass for our new Pastor, Father Sebastian Amato so I went as much for a show of support for him as meeting my own spiritual need.  Following mass I chatted with a couple of people then proceeded to head out when, in the gathering space, I overheard Father saying 'I need help.  I need help today!'.  In keeping with my nature, I of course, jumped right in to ask what he needed -today.  It was to help freshen up the rectory he was moving into as his residence.  After all, Fr. Leo had moved out quite some time ago, and we weren't sure whether our new Pastor would prefer to live offsite which is becoming the norm.

In my old life, not only could I not attend weekday morning masses, I would not have been in any position to offer help - today!  A friend and I agreed to pick up a few cleaning supplies, made ourselves tea at my house and headed back with duster and cleansers in tow.  Other than meeting friends for lunch which was a prior commitment, I happily went around doing all the things I'd do in my own home if it was move in day.  Another friend came in the afternoon and between us and a couple more volunteers, we made great headway.  A couple more visits while Fr. was away, left his new residence in fine shape.

The 'diamond in the rough' of this story is somehow a giant mental shift took place for me personally as a result of this 'menial' experience.  This is certainly not about looking for a pat on the back or any other approval or affirmation.  It's about having the ability and capacity to respond to the need of another without hesitation.  No calendar to change, no checking with anyone, just saying yes to God's guidance.  A friend commented on how it can be one of the best forms of prayer.  It's about how I found the physical stamina to crouch and stretch and lean and balance in ways I didn't think were possible any longer.  it's about sharing time with like minded people who are ready and willing to step in when a need arises.  Is this a glimpse into how the millions of people who do humanitarian work feel?  It's like a spiritual high in the midst of doing the most ordinary and mundane tasks.  I somehow got nudged off the highway of expectation and have been ambling along the sideroad of contentment and peace.  I'm in a place of Many Presents.  The gift of living in the moment.  The gift of taking the day as it comes.  The gift of setting a loose plan with lots of room for change and modification as needed.  The gift of not looking too far ahead in an effort to fit as much into every day as humanly possible.  The gift of leaving space and time for living and enjoying nature in the back garden, puttering and tending God's garden which He's left in my care.  I could go on and on but I think you get the picture.  It's like the saying 'when the student is ready, the teacher appears'.  Hmmmmm.

In between these significant learning moments, lots of fun has come my way and I must say I truly recognize how people really don't want to make commitments during the summer.  We have such a brief time to soak up the warm weather, let's take advantage of as much of it as we can.  On that note I will leave you, hopefully with maybe one little thing to ponder, as I go to poke my nose outside again.

Take care, God Bless
Hugs
Liz

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

The Crossroads of Prayer and Medicine

The emotional roller coaster over the last couple of weeks has been one of high, high climbs, just waiting to reach the peak, then dashing down the other side almost having the wind knocked out.
It's taken every patient bone in my body of which I have very few, to keep from calling the oncologist about the results of the July 12th scan.  Every day I reminded myself there are no real symptoms getting in the way of living so be patient.  Is my quality of life suffering?  No, I don't think so.  Well just a minute.  What about those days where, out of nowhere I felt so weak I had to lay on the couch for an hour or two?  Oh, well yes I suppose.  What about the day on returning home from an hour at the pool I stopped at Shoppers to take my blood pressure?  Well maybe, since taking it 3 times resulted in an average of 95/55.  Not dramatically low for me but one reading was 87/55.  Only one, so go with the average.  Friday that week I decided to check in with my family doctor to see if I should make an appointment to get my blood checked.  Doctor not in but they did have results of the cat scan.  They did??? Since my family doc didn't order the test, I couldn't expect a random family doc at the practice to call with the results.  On a Friday of a weekend planned for fun with the grandkids?  I don't think so.

We got through a day at the Lansdowne Fair, trudging along behind two little girls (6 & 7) wanting to try every ride in sight despite one being a little too short for some.  Since all four of our local grandkids have birthdays in July and August, we gave them weekend midway passes and spending money for the fair as their gifts.  Mike ended up being an 'associate' for Ella on one ride call Alien Abduction.  When he exited, he came and asked me to feel the back of his shirt.  Drenched with sweat from the efforts he'd made while on his way to space, not to give up what little lunch he had earlier.  Too funny!  For a small town, rural Ontario Fair, it was delightful, reminding us all of the once a year carnivals making stops in our own hometowns.  Certainly special and memorable.

On Monday, July 24th I picked up the phone, dialled quickly so as not be able to hang up but still ending up leaving a voice mail inquiring about the results of the scan, now that I knew they were available.  While I didn't quite sit at my desk tapping my toes waiting, every effort was made to distract myself from pouncing when the phone rang.  First call back was from the secretary to confirm receipt of my call with assurance the oncologist would be in contact.  No call Monday.  Went to the pool Tuesday and surely overdid the stretches but no call.  Did I think working harder at exercising would make the phone ring?  Never heard of such a correlation.  Finally late Wednesday afternoon, the call came. What started as a cheerful chat, left me upside down and inside out.  The results are good.  There is no spread elsewhere, as in to other organs.  There is slight progression of disease in the upper part of the liver; not what I was hoping to hear but, deep down, not surprised.  Ok, now what?  I offered I would consider another round of chemo given the ability to tolerate it twice before.  Well, not sure if it would improve quality of life.  Oh.  Well, I need guidance to sort of decide when I might consider starting.  Don't know although would think likely about now.  Oh.  Don't know with these things.  Could take off at any point.  Oh.  What now?  Exactly what I thought would happen.  The scan will be taken to conference tomorrow morning, yes, August 1st, discussed among the team and I have an appointment at 3:30 to further review the results and discuss possible next steps.

In the meantime the mass on the right side of my abdomen has continued to shift and change along with the introduction of a new pain in that area, as well as in the upper part of my back.  Hard to describe but definitely different from anything I've experienced so far.  In the last few nights I can only sleep on my right side due to abdominal pain when even attempting to turn over.  So you see, the roller coaster continues on through the night.  Pain wakes you up, once awake you start to ruminate about the pain and what's possibly causing it.  My go-to antidote though, continues to work, which is to start reciting the Rosary for the benefit of the granddaughter of our neighbour who has just finished her second bout of cancer at the age of 8!

When I get really down, I deal with it using a very simple scenario.  I imagine Jesus standing in front of me and giving me a choice.  The end result is someone has to die.  The choice is whether I am willing to give my life so an 8 year old girl can live out a full life as a cancer survivor.  All I can say is, I hope and pray to God I would have the courage to make the obvious choice.

This morning, after a short meeting with myself, the day carried on without embarking on yet another roller coaster ride.  It goes something like this, which you may have heard before.  I believe we all have a certain number of days on this earth, and once they're up, there's no choice but to get our ticket and get on the train.  Free will only affects the quality of the journey we experience in getting to the station. For me, it helps block the guilt of everything and anything I did or didn't do and how I could have influenced (or do I really mean control?) the outcome.

We may well be at the crossroads of prayer and medicine where we know and accept science can only take us so far.  After that, in my case at least, I invest heavily in prayers and trusting in faith.  It's times like these when faced with uncertainty, it seems everyone I see at church is asking how I'm doing, telling me how great I look and their continued stream of personal prayers.  It's hard to put on a bright face but on reflection, it wouldn't have been hard to express my trust and faith in Jesus.  After all, can you imagine what we'll feel like, after all our fretting and carrying on, we look back and wonder what it was all about?  Of course it's the human side of us dithering around so we don't need to be too hard on ourselves.

These past couple of weeks, didn't I also decide to take steps to shop around for Funeral Services and have three visits with two funeral homes.  Earlier this year Mike and I thought we had sorted out the Cemetery side of things.  Now we're not so sure.  For example, we had no idea there is a cremation service available right here in Kingston which is water based vs. flame based.  Interesting huh?  I won't go into a lot of detail but it certainly helps with the efficiency of the steps taken when preparing for our train ride which will hopefully be to heaven.  We have more to explore and talk about but would like to have the arrangements booked early for our 'trip of a lifetime'!

Oh, and I haven't mentioned that we also attended our lawyer's office to update my will.  While we're at it, might as well have a relatively clear understanding of our final intentions.  Mike and Matt and I sat down today to discuss some of these things and it was reassuring to be able to get their perspective on my plans and ideas.  It was a little humorous when Mike was trying to explain something to me, which I clearly didn't get, only to have Matt nod in agreement with Mike and offer his own attempt at helping me understand.  Yes, eventually I got it!  I would strongly encourage anyone and everyone to sit down with their immediate family to share their own plans and invite discussion to avoid future misinterpretation.

It's with bittersweet feelings I share this was Fr. Leo's last weekend as Pastor of our Church, St. Paul the Apostle.  He has been the one to keep God at the centre of the circle of our lives for the past 27 years.  He has seen us through baptisms, first communion, confirmations, graduations, weddings and sadly, funerals too.  We are ever so grateful for all he has brought to our lives, the values he has imparted to us, especially one which is ever so close to my heart.  We are to meet people where they are at, not where we might be.  It may take some pondering but I think you'll know what it means.

In closing I'd like to share a little poem sent to me by a Pool Buddy at the Y.  When I go to the west end I see him and his wife and, over time, have developed a friendship.  Recently he sent me an email to say:

no need to impress god

he's already knocked out about you

you don't have to convert

just be alert

let go-for dear life itself

pointing here or there-people will follow

you'll find you are the leader

by following the creator

no need to pray with tricky words

no need to dress the altar

no need to wake up early-or go to bed late

no need to wait for heaven

the place you need to be

is in the wake of jesus

as happy as can be

johnnie

On that note, I wish you a good night with hopes to provide a little clarity on my adventures in prayer and medicine next time.

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."

The Rhythm of Managing Chronic Illness

Welcome to a picture perfect summer day, sunshine, fluffy clouds gently floating by in the breeze way up high and the temperature warm enough to beckon us to places which refresh the body and soul.
It's a great start to a day which promises a new future for a young couple being married this afternoon.  We will be attending the wedding of Brooke Kasaboski and Jeff MacNeil and part of our wedding gift has been to ask my Dad to provide a backdrop of fine weather.  I say this without pride or conceit, to think by way of a simple request, Mother Nature can be controlled.  No way!  Rather share an example of how faith and trust can affect our day to day lives.  Dad knew Brooke, her sisters and parents and would have liked nothing more than to help in a way which would matter.  Thanks Dad!!

A couple of posts ago I shared the plan of my oncologist to order a cat scan after we got through our own family wedding festivities on the 10th of June.  Sure enough, phone call received and an appointment set for this past Wednesday.  This is the cat scan my doctor needs to discern whether an idea she has about dealing with the mass in my abdomen is viable. In this past month of waiting for the call, I learned how inextricably linked waiting and trust can be in one's life.  It would have been much easier to send a quick email, phone the office, be the proverbial squeaky wheel trying to get greased up like a french fry going into the deep fryer.  This time I decided to just let the plan take its own course and stand patiently on the sidelines trusting all was in perfect order.  Interestingly, over the past month, a separate mass like something has been building up on the right side of my abdomen.  Had I pushed to get the scan right away in mid June, it may not have even shown up yet.  Of course the hard part is to wait and trust all will unfold as it's supposed to.  Don't get me wrong, not every day is doing cartwheels and bursting with joy, nor does it need to be.  What's important though is waking up each day, feeling ok and carrying on one more time.  Live every day well, until I'm not is a frequent flyer phrase flitting through my sometimes hazy brain.  What now you ask?  Wait for the results, wait for the call to review the results and discuss 'the' plan.  There is incredible freedom in living life in such a simple way.

Regaining some of the open spaces in my mind offers new found opportunities to do small things with great care and love for others.  My self identified Connector self has been in demand of late and it's been fun and fulfilling to be able to help others with just the right touch of pixy dust.  One morning felt like Grand Central Station as phone calls, emails, texts and even a visit at the door brought random requests for information of one kind or another.  Help figure out if a bank record was correct.  Perspective on the legal aspects of being an executor.  Suggest the name of someone who could help with marriage annulments and required protocols.  Pray for someone who is almost at their wit's end in dealing with medical issues and pain.  For many, this sort of activity might seem chaotic and disjointed whereas I observed how naturally I was able to flit from one thing to the other much like my long standing 'butterfly' behaviour. It was like a picture on my virtual white board became clear about my own life.  For once I could see the bright side of how my mind and heart work together for the greater good of all.  When I combine my insatiable curiosity for just about anything, with the dots on my white board, pictures appear almost like a hologram in the right light.  I have enough curiosity to poke into pretty much any and all subjects but not enough to become an expert.  Neither do I want to be viewed as an expert.  It's so much more fun being able to connect and direct rather than be dragged down into the minutiae of any particular topic.  For me, it's such a great insight, like putting on a new layer of skin with a perfect fit.

Getting used to living with a chronic illness can be, I think, as hard as you'd like to make it.  It can become the focus of every moment of every day, or it can be acknowledged and put in its place.  I say that with some reservation as there are times, and I've been going through one lately, where it's hard to put it away.  That being the case, it's important for me to take steps to acknowledge it by welcoming the feelings, let them wash over me like a soft waterfall in a secluded pond letting my emotions get washed clean.  This time I decided to compile a short summary of my adventures since this whole thing started.  Doing so, has helped me to realize why, in times of relative calm, I start to look for signs of yet another rabbit hole opening up. You may appreciate what I mean once you've read the list:

2012 - A planned, routine procedure with 2 week recovery turned into diagnosis of Stage 3 endometrial cancer, 2 surgeries, 33 rounds of radiation, burst wound requiring 6 weeks daily wound care.
2013 - 4 rounds of chemo over 4 months, all preventative; burst spinal fracture, discovery of cells in the liver, put on meds to control growth of lesions. No longer preventative.  Deemed to be medically incurable.
Found a note in medical file which read 'has shortened life expectancy, likely less than a year'.  No one had advised me of this.
2014 - year of the Pillsbury Dough Girl - weight ballooned to 200 lbs. (67% increase of total body weight)
2015 - weight continued as major issue; lost both counsellors to their own cancer diagnosis; blood clot in right leg, mass discovered in liver, considered non cancerous; likely internal bleeding.  Start of lifelong daily injections of blood thinners. (Cancer patients, even on oral blood thinners have 40% of recurrence of blood clots)
2016 - mass in liver turned out to be cancerous resulting in 5 months chemo Mar - Aug; taken off weight increasing drug Feb 2016.
Good news, weight started to decrease toward end of 2016; bone scan/cat scan Dec 1st - bone scan clear; cat scan unchanged from May 2016.
2017 - continued weight loss; cat scan July 12th; results pending; new mass felt on right side of abdomen.........

I had to look up a couple of points in my medical journal only to find a couple of interesting notes:

April 2014 - 'image of floating in a boat on a sea of prayers.  At the end of the journey imagined jumping in the water, swimming with people praying.

May 2014 - Psychiatrist commented - receiving good validation of my current efforts of pulling back.  It's clear I've done work re: codependency.  Keep doing - letting others live their lives.

'We behave how we believe'.
'Are physicians just 'false idols' we tend to put our faith, hope and trust, in rather than our Almighty God?' (No, we are to believe God puts the physicians in front of us who He has chosen to help us).
Adventures in Prayer and Medicine come from the acknowledgement medicine can only do so much. The rest is up to prayers and acceptance of God's will.
'Pray for intercession from Raphael.'

Yesterday at church (this post started Saturday and here is Monday noon) it was noticeable how many people came up to me with virtually the same remarks.  'You look great!'  'How are you feeling?'  'You are in our daily prayers'.  Usually followed by hugs.  I acknowledge my belief I am doing as well as I am thanks to the combined power of all the prayers being directed my way.  Certainly a boost in positive thoughts.  I'm not alone and so many people genuinely care and want to help however they can.

Well, it's time to chat with Jesus to find out what He has on the agenda for the rest of today and willingly go out and do His Will.  Take care, until next time,

God Bless and Hugs,

Liz

dobbsjones@gmail.com

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