The Last Writes

I want you to meet Liz Dobbs Jones, the author behind the blog,  Liz was always open and honest with everyone she met.  When , she got sick, she made her journey public by creating her blog “Adventures in Prayers and Medicine”.  I have never met anyone in person who wrote so eloquently and picturesque as Liz. You can feel and see her journey; laugh and cry with her.  Her writing was incredibly powerful. She connected with many; those that knew her well and those that did not.  She found interactions with friends, family, acquaintances and even total strangers online more useful than any support group or therapy session.  One thing never waivered, her faith.  She believed God had a plan for her and she would live it out as He wanted her to.

One of her earlier posts, she wrote, “As I faced a cancer diagnosis and subsequent treatment in August 2012, I prepared a mission statement as I believe God allowed this into my life for reasons I may not understand, and so it’s up to me:

“To accept the privilege of walking in faith to learn what’s possible through the combined power of prayer and medicine.”

 “If you pray, please pray; if you don’t, please consider it – for maximum cure, minimal side effects, and, above all, that God’s Will be done”.

“May I accept God’s will for my physical, emotional, mental and spiritual health with a wise and understanding heart. If this is my cross to bear, then so be it, may I do so with dignity, humility and grace. ……EDJ”

In loving memory of Liz and her final blog, we would like to share sentiments from those lives Liz touched - whether it was a smile, a warm hug, or a deep gaze into your soul. 

©                          A Saint I Know, Matt Dobbs, Grade 10 (1994)

I’m going to talk to you about a person in my eyes is a small-s saint. She’s not an extremely holy person but she does attend mass regularly, and sometimes distributes the wine. She also attends reconciliation’s and other social events that take place at our parish.  She also donates and goes out and gets donations for several local and national charities. Every year that I can remember she has been a part of Easter Seals Telethon. She collects donations for the Heart and Stroke Foundation through her fitness club. For the past two years, she has been the coordinator for the Walk Against Diabetes. It raises money to find a cure for diabetes. On this past March break, instead of relaxing, she was out delivering invitations for a breakfast to publicize the Walk for this year.  Not only does she do charity work, she also visits and helps out elderly people with their financial stuff, as well as acting as a friend. There is one old lady that she is really close to and a few months ago she was sick and in the hospital. Her family lives in Smiths Falls and couldn’t make it down so she would go and visit her every other day and bring her mail. Basically, she just provided a friend for the lady while she was sick. But most of all she thinks of everybody else before she worries about herself. She will get everybody else’s priorities looked after before she thinks of what she will do.  If you haven’t noticed, I haven’t mentioned her name yet. You may have had a few guesses and maybe it was right, it’s my mom, Liz Dobbs.  I’m not trying to suck up or be a mama’s boy, it’s just in my eyes, she’s a small-s saint.

©      We all think that we have all the time in the world, only to realize how fleeting it really is. Liz, you always stood out by your character and your big heart. Those of us who got to know you were very lucky for having crossed paths with you. You have been a great source of inspiration and courage for me in showing me the ropes when I was thrown into my secondment at UHKF. There are not many in the world like you. You lived your life as a living embodiment of love. You changed my life. You welcomed me so openly and freely; and never judged. You showed me every time we were together that I was the most important person in front of you. You taught me to have faith again by posing difficult questions regarding my relationship with the church. You put the meaning into “Friends are the family that you get to choose”. I chose you and you chose me. You have touched the hearts of so many whether it was at work, church, walking downtown, or in your home. I have a lifetime of memories filled with laughter, joy and happiness of our times together. You weren’t one in a million but just YOU! It is true that God needs good people to manage his work in heaven. He must have known that you are such a great person and can handle any situation. You have shown me courage by facing this disease head on, and true love in the way you and Mike face this so openly together. You will be missed for all that you taught us, and all those beautiful moments that you created from saying “YES” to any event or some dream someone conjured up to raise money for a cause, all the way through to showing us what a proud grandma you are by hosting your grandchildren’s fashion shows. I am humbled and grateful to have been included in that circle of love. I can’t imagine what you feel or what your thoughts are, so I just want to show my love and appreciation for you by just being by your beside on this journey or life, and comfort you as you have done in such amazing ways to everyone whose life you have touched.  When the sun says goodbye to earth, it leaves a beautiful sunset as a gift. When friends say goodbye to each other, they leave mementos of everlasting and priceless memories. Liz, it takes a minute to find a special person, an hour to appreciate them, and a day to love them, but it takes an entire lifetime to forget them. I wish you a peaceful afterlife.

©      Hi Liz, Today I was painting - and thinking of you.  I think of you often and realized you probably would never know that I think of you so much.   When I was a little girl, I wanted to be just like you.  To be a business woman with a family.  So, I was cleaning up my paint brushes and thought maybe I would email you and tell you how much you have always meant to me - how you were a mentor to me wanting to become a strong business woman.  How when you found God I always wondered how that happened and I thought of a million things I wanted to say and then though - no, that's selfish of me to reach out to you after so many years. I remembered my mom telling me you had a blog and I thought I would check to see if I could find it.  And in it you said " it is necessary to make a deliberate choice to revive our mutual love, to revive our relationships so they are not covered by ashes of apathy, indifference, egoism.  So, I can't help but stir up the coals and tell you I love you.  Tell you how I hold so many loving memories of you and Rick and Matt.  How I hope to see you again in Heaven.  How thankful I am that you were in my life as a little girl and how you showed me that I could be a mom and have a career and be strong.  Thank you for everything you did to help me dream.  Xo

©      We met The Dobbs family upon arrival to Kingston, we were next door neighbors and our daughter now 32 was two weeks old when we met. We enjoyed many dinners, going to Mass, a Caribbean cruise and of course many hockey games. Matt and myself share September birthdays and we share special memories over the past years at Woodenheads, Liz was one of a kind.

©      Liz was a bright light for the 4-5 years I knew her as her family doctor. She was a blessing every time she walked through the door, and taught us all so much about faith, living, hope, grief, and death. I am so sorry that I didn't get to say goodbye, however I hold in my heart all the conversations we had, the hugs that we so rarely get from patients, and the way she obviously touched her dear husband and friend. I have received news of her passing from Angeline, our nurse, here in Thailand. I regret not being in Kingston for her passing but consider myself and our whole team blessed to have known her.

©      I'm sure there is a special place in heaven for Liz, as there was on earth. She brought so much goodness to the world in all she did. Liz approached life with a wonderful energy that couldn't help but affect everyone and everything she touched. I am saddened to learn of her passing but will always remember her unique approach to making the world a better place.

©      She was a remarkable woman, a trusted colleague, skilled practitioner and good friend. We will miss her indomitable spirit and will. She's left an enduring legacy in our community as she was much loved by all who had the opportunity to know her and to work with her.

©      To honor a dear friend whose deep faith, commitment to her family and community has no equal. We will miss you among us dear Liz, may your memory be eternal.

©      I consider myself lucky to have known Liz. Thinking of her now, I smile with tears and feel love and joy to have been her friend. Being with her gave me optimism and renewed faith.

©      A life worth remembering! Liz was a very kind and genuine person.

Final Sign off. . . in Liz’s words . . .

Thank you, thank you, thank you. The emails have been washing over us like a waterfall and while I'd love to respond to each one individually, please know I've tucked your message into the envelope of my heart and treasure it dearly. Until next time. God Bless.....EDJ

Gone on her next adventure ……   November 23, 1956 – March 19, 2019

Hospital

Liz is not able to post today. I will work with her to see if we can get one in a couple of days.

Start this, Stop that, Offset Here and Go From There

I'm joining you this morning in more of a state of fog and fatigue than I expected, so bear with me as I recall our past couple of weeks.  In order to avoid repetition, I reread the last post before starting and much of what I've been pondering has already been said or done.  Ok, now for some new tales!

Medical update at the forefront had us filing into KGH, sans our dear friend Tess who was in T.O. caring for her grandsons for several days as they competed through hockey and basketball tournaments.  I've never seen someone so carefree in their time devoted to close family, well, I suppose other than my aunt and uncle when we were younger, who ran around the province for other sports activities with their own children.  In both cases these women weren't committed to full time employment restricting their own schedules.  Having said that, my aunt, now 80, never did learn to drive so my uncle carried the load; thank goodness he always enjoyed driving.  Alright, back on track, to the present where I'm not reminiscing into the past, much more rose filled than the current moment.

My weight fluctuations have continued in the range of 5-7 pounds; yesterday I was down to 122.2, yikes don't want to go much lower.  Yet in a way I feel so much like my old self. Other than of course, leaping into the cycle of taking one med to counteract the side effects of another.  How does that work in my case you might wonder?  

Most important is to start a pancreatic enzyme (called Creon) to help my body absorb the fat and protein intake and not just have it slide right through in the matter of a few hours (hours you say?  Maybe less!)  Very strange to have an appetite and lose weight.  One thing I don't understand is how people can lose weight in such a way and not really notice the symptoms.  The context of this is pretty much the same as taking Beano when about to eat gaseous food like beans, broccoli and so many more.  You take it at the start of your meal, either one or two capsules, and while just starting yesterday, improvement noted!  Yay at least a start.

Well, I'm staying on Dexamethasone (Dex) to help with fatigue and create some dusting of energy.  Oh but it must be taken with food to avoid stomach problems.  Just in case get some over the counter Ranitidine to coat the lining.  Ok, got it.  Oh yes, it will also help offset potential stomach ache from the Dex.  

I will move from grazing much of the day to more defined meals and snacks leading to 3 meals 3 snacks and taking 1-2 enzymes each time.  Too bad, I've just sort of gotten used to grazing, but then it's too easy to open mouth, insert food and feel too full after a short while of this practice, especially when not getting exercise or activity.  So far my favourite thing to do of going to the pool has not resumed but then who would want to be the 'wanted culprit' for soiling the public pool at the Y!  I'm sort of feeling stretched between becoming a poster child for Weight Watchers and Erma Bombeck sliding along with a large bowl of ice cream in one hand and a chocolate bar in the other!

A rather surprising visit from our Church Pastor last week gave us a chance to bring him up to date on our Adventures over the past 6 years, most of which he had no idea.  Part of the impact, I could tell was he, Mike and I are the same age within a year of one another, giving him a perspective from a different perspective.  What I mean by it, is I was very open with my open opinions, values and beliefs from where I sat without questioning or wondering how many other situations similar to mine he's encountered.  Sure he's likely dealt with lots of people who were also on the 'exit ramp', but each person's experience is as unique as the person involved.  And we are all relatively young.

The conversation with Fr. Amato led me to an observation of our Church Community and my concern about 'notifying' people in change in status health wise and not wanting to have to repeat myself ad nauseam about my obvious decline.  This is the first time physical signs are appearing leaving others to understand, supported by my blog, of the path we're on.  Not yet having perfected my 'elevator speech', I find myself stumbling over words I've heard others use which don't resonate well within me.  What is actually comforting is how members of our faith community can almost intuitively approach asking how I am without asking.  They reframe former inquiries like 'How are you doing?' to a much more gentle way of offering prayers of support rather than some false sense of hope which likely no longer exists.  

On reflection, one thing very important to me is to be authentic in my story, real without being maudlin and sincere without being flip or light handed.  I just want it to be mine.

I'd like to close today with a quote from a daily reflection I receive from another member of our faith community titled 'Focus for Today' that caught my eye and sums up some of what's been happening in our lives of late.

Renew relationships

"With a fireplace, you must occasionally pick up the poker and stir up the coals so that the ashes do not bury them. So too, every once in  a while, it is necessary to make a deliberate choice to revive our mutual love, to revive our relationships so they are not covered by ashes of apathy, indifference, egoism ."  Chiara Lubich  (The Peal of the Gospel  p65).

Take care and until next time, hugs and God Bless,

Liz

dobbsjones@gmail.com

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

A Rainy Day Update.....

Here we are bouncing around emotionally and physically somewhat like the weather.  From being snowed under one day to blowing around the next, and drenched the third.  Much like today which looks more like a spring day heading for the promise of melting snow and fresh buds to appear on the trees.  Wishful thinking?  Perhaps, but it never hurts.

Things have been relatively quiet on the medical front in terms of appointments and visits, tests and treatments.  I've had one phone in check up with the Nurse Practitioner which was most helpful to put all things in perspective of late.  I had a list of questions, she had a list of answers and so we bounced back and forth clearing a path of much better understanding on both sides.  I must admit my mea culpa for not hearing back as soon as I'd hoped.  She responds to patients by triaging her messages and emails and what do I do?  I say, Oh sure, go ahead, I'm fine for now.  Respond when you can.  Take care of others who may need it more.  All to only fuel building resentment, only so obvious now, of wondering when my turn to be called back would come.  Ok lesson hopefully learned.  She is NOT a mindreader and can only respond to a direct call for help.  Got it?!

My biggest physical challenge over the past two weeks is the inability of my body to absorb fat due to decreased liver function.  So what's the big deal with that you might wonder.  Well I learned first hand by the number of times I couldn't control bodily functions when feeling reasonably ok to be out and about.  Needless to say the first thing to do would be to stop any and all laxatives which only work to make me a whirling dervish racing around in circles trying to find the closest restroom!  The aftermath of weakness and sense of physical draining leaves one like a damp rag being wrung out to the extreme.

Another important factor will be to have a conversation with the dietician to determine what I need to be eating and drinking to have something stay with me.  Only now am I starting to understand the concept of how people lose weight without trying when they are in these situations.  Over the course of two weeks I've lost 7 pounds.  While it puts me back close to my 'old' normal, this certainly can't continue for any great length of time!  No wonder they want me consuming lots of calorie packed food and drink.  

Listening to my body continues to be a high priority, reducing activity as needed without pushing through.  Now, more than ever, my body needs rest, it simply can't keep up.  A rest in the afternoon may become mandatory - oh my, that long held feeling mid afternoon when working, to simply lay your head down on your desk and catch a few zzzz's!  It's now totally permissible.  Activity is only a means of feeling better and, if beneficial, keep going to the pool.  If acupuncture is helping overall, go as regularly as is recommended.  Hydration, important but not a means of reducing levels of jaundice; my theory not theirs.  Overall I thought if I dramatically increased my liquid intake, I could dilute the toxins in my system.  Apparently not so easy.  It's all part of the process of the reduction in liver function.

I even asked about medical marijuana for pain but was advised there is no good evidence it helps with cancer pain; it's ok for nausea related to chemo but apparently opioids remain the primary answer for cancer pain.

Probably the most important piece of information served to me at the end of our conversation is as follows.  I said I wanted to know, but didn't want to know, but sort of did, of time we're talking about based on some number thrown around at previous appointments.

The medical teams admit and agree they have no idea of accurate prognosis of time left in one's life - ain't that the truth from what we've all witnessed time and again.  Here though, is what they look for, Level of Function.

If one's overall level of function changes (decreases) month over month, they likely have months.
If one's overall level of function changes (decreases) week over week, they likely have weeks.

This all depends on what they are able to do and overall activity level.  I don't know about you, but I sure found it a helpful approach.  In my case I was told I must give serious consideration to reducing my level of activity and consider more rest during the day. 

While I think I've cut back, even looking at the calendar over the past couple of weeks leaves me wondering about myself!  We've been out for dinner at least twice, but then who wouldn't rather have dinner out than having to think about cooking?  Both times were with family which also fits right in with our growing priority of spending time with those closest to us.  We spent time with Doris, my Dad's dear companion of 17 years, who turned 97 on the 6th of February and is living in a nursing home.  We always enjoy our visits once we settle in and recall the times we've spend together over the years.  

I've had lunch out twice with friends whom I have special connections to.  One of those friends I met during a silent retreat we've attended for several years now at the Manresa Jesuit Centre in Pickering.  She has prayed over me in the past with direct and immediate impact.  This time we left the restaurant, packed into my car, as she'd been directed all through lunch she was to pray over me, if I was open to it.  Well, of course!  

From there though, I went into a full decline in my feeling of wellness but perhaps to slow me down yet again!  I had a lovely visit the next day with my son's very first girlfriend who I've know since she was 15 and is now the mom of a delightful 3 month old baby girl and recently turned 34!  How special is a visit like hers?  We have always been close in a very special way, with usually her contacting me out of the blue with lots of things to say.  

This afternoon I hope to get to get in a visit with my Terminal Twin, Geneva and see where Holy Spirit leads us in our fun and laughter.  Spending quiet times together with people is very much what it 's all about these days although I've attended a couple of learning sessions at the church which continue to feed my soul in ways hard to describe other than an overall general sense of wellness and security.  

The last week or so has included prepping for our third Granddaughter fashion show which takes place this Sunday here at our house.  The models will include 4 of our granddaughters, ages 8,7,4 and 3.  Last year we didn't get the time nailed down soon enough to have many, if any visitors other than our own family.  Oh my, this time we are up over a dozen so far!  It will be interesting to see the outcome now, with them all a year older.  The collection comes from the clothes I buy twice a year from a former colleague whose daughters have grown out of their own lavish assortment of attire!
No I am not taking on all the work.  I've recruited dear friends who will prepare the refreshments, others who will do the photography so I can create for each of them a post show photo book and the moms of course to help with organizing the selection of styles they will wear.  Should be lots of fun and mayhem.

On a final note, I am pleased to let you know I made an appointment with and had a meeting at the Jump Plus Store in Kingston last Friday about backing up my blog and next steps of figuring out what to do with not only my blog but cleaning up, purging, saving and organizing my MacBook.  What a great feeling to get a logistical issue underway when I have such little knowledge, or interest in learning how to do it all.  This is one of those times to call in the experts! And I had saved my comments from previous posts and have them stored on my computer.  Just so you know.
Also, at the start of my blog, there is a large notice from I think Google+ which starts out as rules of the European Union.  Today it went on in fair detail about how many items will be 'stripped' from my blogspot account.  Well, I've never added anything and am almost wondering if the overall change will have less impact on my little blog than originally anticipated.  I'm still glad though to have gone ahead with plan to back it up!  More on that as time goes on.

Oh and on one final, final, note I'd like to thank an individual who emailed me out of the blue to say they were thinking about and praying for me.  Never realized I'd find it so touching especially when I've known them for 30+ years on a work related, casual basis to have them reach out in such a heartfelt way to offer prayers of support.  Wow, thanks!

Take care, I'm hopeful the rest I've been affording myself this week has helped lower my body's need to rebel against itself and I look forward to sharing more insights about lessons I've been learning rather than focusing so much only on things medical.  By next post I will have been to one more appointment.

Hugs and God Bless,

Liz

dobbsjones@gmail.com

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

Moving to a World of Uncertainty

As I sat down, all set to share an update, a wave of fatigue came with me so together we will attempt to provide as much information as possible without getting too scattered among the subjects we could cover today.  The timing has been less than ideal given my self imposed deadline of the 31st of the month and our most recent oncology appointment just last Tuesday on the 29th.

Back to the facts, and just the facts, suffice it to say we are now fully moving into a world of uncertainty in terms of my overall health.  On reviewing the last couple of posts, I'm sure it's not likely a surprise to anyone who has kept up to date when I share such news.  It appears from the results of bloodwork done last Tuesday, my liver is having trouble keeping up with moving the toxins out of my system, and as a result, is enlarged which adds to the level of pain.  It's a mixed up place to be right now especially having bounced back a number of time over the past six and a half years.  Is it about to happen again?  I didn't ask outright and somehow, given there doesn't seem to be any additional, different treatment on the table, not likely.  It's a very complicated place to be and if the professionals don't have any solutions, I sure don't have them either.  Suffice it to say, I am currently staying on the estrogen blocker, we are managing pain and discomfort the best we can and the phrase 'quality of life' was mentioned several times during the conversation.  I have some reactions to the emotional side of the appointment.  In ways, it was like preparing for game day (today for the NFL) and in some ways, a little too light and flip for my liking and the gravity of the discussion.  There were six of us involved, including two medical students, who, I believe, have every right and need to be there for such experiences to see first hand what they may be dealing with in the future.  In looking back it might be one of the most important opportunities I afford someone who will potentially be affecting the outcome of caring for others in similar circumstances.

A steroid called Dexamethasone was prescribed to help reduce inflammation.  It was one of the three standard premeds I had when on chemo.  For this purpose here is a helpful medical explanation.  The liver is enclosed in a sac.  As it becomes inflamed, it pushes on the sac which has nerve endings thereby causing pain.  By reducing the swelling, using this steroid will help reduce pain and overall discomfort.  Also provides some energy to offset fatigue from long acting Hydromorph Contin.  A little further into the circus of medication to offset side effect of medication by the sound of things, all in the name of 'quality of life.'  A true juggling act of shapes, colours and sizes to keep things starting, stopping, moving and calming.  

Next steps include a phone check in from the Nurse Practitioner who is excellent by the way in how she explains things, a follow up appointment with her as well as the oncologist and whatever 'team members' he brings along (all with my permission of course) in a month's time at the end of February, followed by a cat scan around the beginning of March.

Does that mean we've entered the exit ramp?  It's how I've often thought of the adventures I've been on.  The final day here on earth is totally in God's Hands, while we, and our decisions, only affect the quality of the journey.  It is up to us whether we take 401 or Hwy 2 (or 3 for some of you or some other meandering road to our final destination), or even ride a bike or motorcycle.  Heck, some people might even choose to walk.  It just occurred to me right now, as soon as we're born, we are on an exit ramp of one sort or another but hey, not going there today, it could turn into a very long conversation.

There have been signs along the way, much like travelling, where, if we pay attention, might help guide the way and direction we are going.  Just lately there have been a couple of people arrested for driving on major highways in completely the opposite direction of traffic!

A few things have happened of late causing me to pause and reflect on what is happening in my life.  There have been layers of change, some as simple as the temporary 7 week closure of the pool, one of my saving graces, for renovations.  To the point I think I'll cancel my membership and, if I choose, try another location but thereby letting go of some of the casual relationships I've developed there.  Coming off chemo, going on Letrozole in a mixture of side effects of new drug and feeling unwell due to disease progression and generally feeling unwell.  This combination has led me to settle into an even more quiet existence.  Sort of, until you hear the next story.

On January 24th Mike and I, as we were going out to do a mid afternoon errand, crossed onto what is a fairly busy road in the west end where we live were caught by surprise and shock at coming up to a major crash with both vehicles off the road in our direction of travel!  One woman was lying just beside her car, obviously having gotten out on her own.  The other, several meters up the road was wedged in by seat belt, air bags and finally needing the jaws of life to get her out.  We both went up to the woman lying beside her car, no first responders in sight, traffic winding its way through the carnage of twisted metal to continue on with their day and barely anyone actually stopping to see how they might assist.  I walked up to a young woman, clearly one who did stop,  at the second car who had just called 911 when I heard the driver asking to call her mother.  

It was the least I could do and ended up keeping a connection between mother at work and daughter in her car, literally ripped apart with front drivers wheel completely severed from the Cadillac SUV she was driving.  Apparently the engine of the other car was on the far side of the road.  According to two male witnesses, it was a virtual head on crash.

We kept mom up to date on what we could tell about her physical condition  i.e. no profuse bleeding, no way to move her, probably a good thing until first responders arrived and keeping her conscious and trying to get a blanket to warm her up.  We remained until the firetrucks came and extricated the woman, she was loaded into the ambulance and confirmed she was being taken to Kingston General Hospital so family would know which hospital to head toward.  At no time had the police shown up before we left the scene.  Without being first hand witnesses, our role was complete in keeping these victims as calm and comfortable as possible until help arrived.  I was able to, at the end of it, acknowledge the help of God and His compassionate care on how these women could have fared much worse than it appeared.  It was definitely a surreal experience for us and one we had time, while on the scene, to question what our responsibilities might be and how we might carry out God's work right then and there.  It seems it may have been as simple as maintaining a calm composure to help these individuals through a very distressing life experience.  Thank you God and Holy Spirit for guiding us through. 

A final major 'layer of change' in my life, popped up just this week when I received an email from the folks at Google+ to notify me as an individual or consumer user as follows, not all of which I as yet understand:

You've received this email because you have a consumer (personal) Google+ account or you manage a Google+ page.

In December 2018, we announced our decision  (I clicked on the announced and do not recall receiving it - brain fog?  Don't think so in this case) to shut down Google+ for consumers in April 2019 due to low usage and challenges involved in maintaining a successful product that meets consumers' expectations. We want to thank you for being part of Google+ and provide next steps, including how to download your photos and other content.

On April 2nd, your Google+ account and any Google+ pages you created will be shut down and we will begin deleting content from consumer Google+ accounts. Photos and videos from Google+ in your Album Archive and your Google+ pages will also be deleted. You can download and save your content, just make sure to do so before April. Note that photos and videos backed up in Google Photos will not be deleted.

While I've only received maybe a dozen comments along the way, I think I did save them to a separate file.  What I've noted though, is the comments sharing function is being eliminated tomorrow, February 4, 2019!  I may do a double check to see I've saved them. 

The strange thing for me was how recently I had started thinking about the 130 posts which weren't backed up anywhere on my computer and how might I retain the details of my Adventures in Prayer & Medicine in a way as to share updates on my health, especially since I don't 'do' FaceBook.  But as it turns out, almost more importantly, preserve thoughts, nudges, guidance and insights along the way.  As I've professed a number of times in recent months, being a neophyte techno user leaves me somewhat disadvantaged in knowing what the next steps are.  Oh sure I read thought the instructions and details, without much more knowledge at the end than when I'd started.

As it turns out at dinner last night with our dear friend Brenda and her brother Bob, visiting from Nfld, we discussed the topic and Bob suggested I might just call up and book an hour of time from what's known as a retail 'store' JUMP; a smaller version of an IStore.  I called today after church, just happened to have the Personal Trainer answer the phone and we have an appointment set up for this coming Friday for her to do/help me figure out how to download my blog!  Does this mean I won't be writing my blog anymore?  I'm not sure but don't think so.  It does mean there is a means to capture and save what has been written and who knows what will happen with the content at some point in the future.  Stay tuned and I'll let you know how we make out.  I'm not sure if you can see things from my perspective on these few examples but it's sort of watching life happen around me and just figuring out how I am a part of what's going on and where I fit.

I must confess, at the start of today's post, I had to pause and take a rest for a half hour which then allowed me to get up again and hopefully give you an update in a halfway reasonable layout.  Thank you to those of you who have already attempted to log in for this weekend's update; your patience is appreciated.

For many of you who I do correspond with on a regular basis, I am truly sorry to those of you I'd like to have gotten to sooner and more directly with some of today's information.  The road ahead is what it's going to be and we'll manage as best we can.  Another time I'll share an article from Dear Amy, well worth reading about how Cancer Diagnosis Necessitates Grief Circles. (unless I've already shared it, which is possible).  While I have not had the difficult experience of the writer of the column, there are some very helpful logistical points to consider in future.

It seems I have much more to share, along with my last couple of visits with my dear friend and 'Terminal Twin', Geneva who I saw yesterday and had a most heartwarming time since we are so in tune with how one another is feeling these days.

Until next time, take care, enjoy life and God Bless,

Hugs,

Liz

dobbsjones@gmail.com

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

Floating in a 'Sea of Brain Fog'

This message may come to you with a little less clarity than in the past as I attempt to rise to the surface of the sea of bubbles caused by waves of  Hydromorph Contin swirling around my brain. You may think I'm mis -spelling or mispronouncing Hydromorphone but no, the long acting version is called Hydromorph Contin.  I may have shared this with you before but a review of how this opioid drug works is important for anyone to have a basic working knowledge of if you're ever faced with this kind of ordeal. Actually I didn't even know there was a different name until this past week so couldn't have talked much about it.

After signing off on my New Year's post, the next few days indeed led us to the conclusion we'd been dealing with confusing results of the cat scan from December 6th.   What we thought was a whole layer of side effects from the Letrozole, we've learned is actually a mix of side effects as well as a cranky liver from the last chemo treatment which was December 5th.  I'm not just sure when this realization came to light other than to tell you on January 2nd I sent an email to the Nurse Practitioner for my file, outlining the situation at the time.  Nausea creeped in and out for which I started taking Metonia which causes sleepiness.  

When I realized the biggest problem was the pain in  my left middle back, moving to the right side and my granddaughter saying I looked 'sort of yellow', which Mike confirmed as well, it was time to wave the white flag to say something besides side effects was going on.

In we went the next day, Thursday, January 3rd, to being told they might have admitted me based on the information in the email, but, thank goodness, I looked too well and they would let me go home!

We decided the best next step in my case was to keep on the Letrozole as it's only been a couple of weeks since starting treatment and it only makes sense to give it a fair chance to kick in to provide the hoped for results of containing the growth of the mass.

The next step is to get back on the Hydromorph Contin 'dual clock' regime which goes something like this:

Hydromorph Contin has its very own clock of treatment,
Every twelve hours a prescribed dose is taken, no more, no less is spent.
But what happens in between you say?
To keep the pain as far as possible away?

Another clock is wound with time, a pace its very own,
With 2 mg. every hour or two, depending on how the pain has grown.
The two clocks do not meet or touch or cross one another,
They're set and reset by patient, caregiver, one or d'rother.

The sense of success comes when the twice daily 'contin'
Has no more 2 mg. 'break through' come a callin'

You may recall I've been taking a form of Tylenol called Tramacet for quite a long time now.  Since liver enzymes were elevated, it was time to call off the Tylenol class of drugs.
In summary, the chemo has run its course, liver enzymes are elevated, some bilirubin possibly creating blockage, all of which turns us to being as kind and gentle as possible with my liver.

We also got into the conversation which caught both Mike and I off guard but, in the end, we're glad we had.  It was about what happens when the time comes and we're at the end of the road for treatment.  When the topic is raised it's hard not to shy away and leave for another day even though it's what we'd all desperately like to do.   And so, as it stands, whenever the time comes, and no one knows in any definitive terms when it might be, realistically, it could be a few months or less as the liver starts to present external signs of failure.  At that point you start to have discussions about the practical things in life and what you hope to achieve by the end.

We came home on the 3rd of January quite shaken with the discussion which, in a good way, gave us cause to pause and reflect on the reality of the future. 

On January 8th we returned for our regular return visit, took the time to explain our surprise at where the subject went only five days ago and here I was feeling quite a bit better.

Dr. B. reassured us we are still on Path A which is to let the Letrozole run its course until early March, at least, after which a follow up cat scan will be done to  check the effectiveness
of the plan.

Today we met with the Palliative Care Team, including Nurse Practitioner (N/P) who did a full review of the bit picture then narrowed it down into a 5 step plan with a further follow up in two weeks.

I was going to share the short a la carte menu with you but don't want to create any confusion with anyone wondering if 'my plan' would work for them, never mind their brother in law's, second cousin removed, best friend's mother.  Every one has their own plan to suit their own situation.

Needless to say I've been laying very low since January 1st blog post and the fog isn't in any rush to lift anytime soon.  Last Friday I was to prepare homework for my Friday art class which I worked on diligently, with many attempts and nothing working out as I'd hoped so I laid it aside, went to bed only to finally crawl out after noon which was almost the end of class.  Otherwise it's been a quiet time.

On that note I will sign off, wish you the best for the next couple of weeks and, God speed, write again on the 31 of January.

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.

Under 20 Minutes from 2019

Are you bursting with Christmas cheer right about now?  Have you had that last little bite of sweets, promising no more until...... well maybe one more and then wondered why you ever took even one more bite?!  Our good fortune was not having made a full turkey dinner at home, until tomorrow.

We got to enjoy ham and what I thought was a huge roast beef at Brooke and Mike's but quickly learned it was venison.  I heard it was great!  Adventuresome as I am not, I passed on the delicacy.  We enjoyed the company of twelve of us joining together like the twelve days of Christmas.  Blended, extended and somewhere in between.   Christmas Day we had our own kids in and out, in and out, in and out, then headed to Mike's brother's for a ham and turkey dinner.  My appetite has been much less than normal making it easy not to overindulge.  There we had a reunion of their two children, partners and grandchildren including great grandson Baby Kylar who is now 18 months old.  A cheerful, happy little boy still in need of our prayers as he explores the world of living with Cerebral Palsy. These two young parents are doing their best caring for and clearly loving this desperately sweet, special needs child.  Prayers go on.

Let's end the year with a medical update with some substance.  The decision was made not to do interim blood work between chemo treatments given my positive energy levels.  Hemoglobin moved up just a couple of points to 91 so at least stable; no need to rush to action (like a transfusion).  Weight is 132.6 lbs of which, I would say, a good 10 lbs is a spare tire spreading comfortably around my middle.  May be a good thing to focus on next year (sounds so far away huh?) 
Blood pressure was in the normal range for me at 104/57.  Needless to say I don't have to strictly control my salt intake.  
The monthly tumour marker blood test known as CA125 as an indicator of disease activity continues to trend in the wrong direction.  This time up to 315 (remember a normal healthy person is 35 yet mine last year was over 1600).  The signal this time though, is it's not reacted to chemo this way before.  I've had the same chemo protocol three times now since 2016 and the previous two times, the CA125 tumbled nicely into ranges below 100.  It's one of those things that cause the doctors to go 'Hmmm'.  
The cat scan was described as confusing which is really saying it reflects mixed results.  Let me preface the details by saying overall, the cat scan is pretty darn good given where we're at.  It's done with a view of the chest, abdomen and pelvis.  There has been slight improvement in various areas of my liver and there are no significant changes.  The downside is there is a measurable growth in the inferior right lobe of the liver making it about 2 x 3 inches.  The other major mass in my liver is about 5 x 4 inches but hasn't misbehaved.  Hey if you put them together I'd end up with a 7 x 7 inch square!  Don't think it works that way though. 
No other abdominal organs appear to be involved.
There are no issues with bony skeleton.  
The overall summary is 'Slight progression of hepatic metastatic disease.....no other significant changes.'

Isn't this exciting news to be reading on New Year's???  Feel free to cast it aside as you enjoy your day being grateful for all the good things in life.   Overall I must say, this has been good news.  What you might be asking is 'well now what?'  'Where do you go from here?'.  

It seems the chemo has run its course in effectiveness so we are going to change up the treatment plan in an effort to confuse the cancer cells.  Chemo for December 19th was cancelled and I was put on a hormone treatment plan of simply one pill per day.  It's called Letrozole and is one step up from Timoxofen, a very commonly used drug used with breast cancer patients.  Nurse practitioner Jan went over a review of my file over the phone and concluded:
It's ok to go off the chemo drug Taxol.  It's a good decision to go on Letrozole.  It is an estrogen blocker which, in my case, is a good thing as the cancer cells feed on estrogen.  She considers it a really good treatment option as it may go after the liver lesion, the 2 x 3 mass which hasn't responded during the first half of chemotherapy.  
Ideally, everything will remain the same or improve.  From here I have a three week review to see how I'm managing on the hormone therapy with a scheduled cat scan for early March.  I must tell you the first few days on this drug were questionable.   Oh my, night sweats like someone pouring a cup of water over your chest, changing 2-3-4 times a night.  On top of this feelings of nausea.  Thank goodness I still had medication to deal with post chemo nausea.  Ya right.  Well my decision to take those during the day left me flat on the couch nodding off one way, turning over, nodding off again, turn, repeat and still sleep at night.  And then seemingly out of nowhere I developed a muscle ache in my mid back which made all else pale in comparison to the pain.  Welcome back Hydromorphone.

All that pre-Christmas stress and rush I've felt in the past simply fell like melting snow, here for a moment then gone for good.  It was a great way to practice mindfulness and staying in the moment.

In amongst everyone's visiting, I am ever so grateful for how kind and considerate our family has been to my latest little tumble down a slippery rabbit hole.  When I shared my feelings with Matt, he simply replied 'Then don't do anything stressful.' Funny how sometimes we feel like we need permission.  Nathalie arrived home from Victoria on the 20th and while we thought she'd be home with us for most of her stay, she's been doing what most 24 year olds do - jam pack every moment of every day catching up, crossing items off an agenda, visiting friends and basically using our house as a stop over or home base.  Her brother Gabe and partner Maddie arrived on I think the 23rd and while we thought they'd be staying with us, they'd brought their cat Ziggy, so they promptly advised they'd be staying with Maddie's sister in Kingston.  No cat's in our house.  The point I'm making here is how we had an original, tentative plan, yet by remaining calm, only doing what we could, things shook themselves into place relieving us of being the 'Innkeeper' for everyone's night.  They are actually quite helpful, clean and considerate so it wouldn't have been a problem but God just said, 'It's ok, I'll give you a break.'  Thanks God.
Another friend of Nathalie and Paul's (her boyfriend) was supposed to stay with us last night and tonight but as it turns out, he's opted to stay at Paul's house with gently nudging from Paul.  And no, I'm not fretting about what people might be thinking or if somehow we've been rated on Air B&B as not being suitable hosts lol, just kidding.

This morning I received a flustered call from Matt asking me to pick Ella up a Woodenheads where he and Jaclyn work as there was some mixup in the schedule and while they were both to be off today, both were scheduled in.  Oh my!  Of course I said yes, went into the garage to jump into my super mobile and fly to the rescue only to discover the front driver's side tire was flat.  Back in I went, Mike instructed me to take the truck and on he went with figuring out how best to get the tire fixed (he did and we had it back by 2 pm).  I am so sincerely and genuinely, almost bursting with joy, at how calm and unruffled I've remained through it all.  

For a very long time I've known a trek into the depths of my inner being would be necessary, to reflect on who I really am and poke around until some things started to fall into place.  I can't really identify anything specific, but I can watch myself as though watching smart tv with more and more examples of peace filled moments which, in the past were frantic and, as Mike would sometimes say 'like an open nerve'!

Last Saturday, we had Ella overnight and, when we do, usually attend Saturday 5 pm Mass.  As we were walking up to the church she looked up and asked if she might be able to light the Advent candle (again).  She had done so a couple of years ago and I was thrilled she even remembered!!!!
In an effort not to disappoint her, I gently told her children were usually asked before Mass and they may already have chosen someone.  Happy with the answer we quickly found our seats, ready for Mass to begin.  Not a minute later, Michel, a seminarian assigned to our parish, walked right up and sat in the row in front of us.  I thought, oh sure, he's going to ask if I will serve at Mass just when I told Mike and Ella I wouldn't.  Oh no, he turns around, speaking directly to Ella, asked if she'd like to light the candles.  Candles you say????? As it turns out she and I were invited to process with the altar servers and priest to the front of the church and, with no help from anyone Ella lit the taper from the candle on the Altar (quite high for her to reach) then confidently walked back and lit each of the four Advent candles in succession.  It was so nice to confirm to her God had special plans for us to go to Church that evening as He had a job for her to do.  Keep spreading those seeds!  She was thrilled and had many parishioners tell her what a good job she'd done.

Earlier that week we drove to Lansdowne for granddaughters Azlyn and Matilda's Christmas concerts at their school.  Of course they weren't on the same day but, again the beauty of retirement allows us the luxury of taking the time to offer our encouragement and support whenever they performed.  They each sang with their classes one Christmas song and we were able to soak in their in school behaviours and laugh with 4 year old Matilda's serious approach to her role as part of her class choir.  
Their 10 yr. old brother Ayden served at a bake table at the entrance to the school.  He came to me, absolutely glowing to say a man had just bought a $10 plate of cookies, paid with $100 bill and told him to give the change to the Foodbank where the proceeds were going.  He said how he will never forget the incident for many, many years.  The magic of true Christmas is everywhere if we just lend an ear, keep open an eye and remain aware of our surroundings.  

Mike has been an absolute rock over the past couple of weeks, not like he isn't always, except when he caught the nasty cold mid November!  He is forever at the ready, encouraging me to do whatever I need to feel better with never less than a kind word.  I cannot say enough about the hero he has been to me not only these last six plus years, but in the more than 14 years we've been together.  God has blessed me twice in a lifetime.  I'm not really sure of the situations people find themselves in when one partner is diagnosed with a life threatening illness.  Nor do I make any effort to find out.  I don't need to make comparisons to learn how good my life is right now.  All I know is we're able to laugh together, cry together, play together and even work together despite him having to do all the heavy lifting these days.  This back pain leaves me wondering if I've met my match.  Maybe for a few days, but I rely on that old streak somewhere inside where a tiny, but mighty voice declares 'Don't tell me I can't!!!'  Imagine hands on hips and one foot stomped out in front of the other, eyes flashing.  Well, I think she's just about had enough of this nonsense.  We'll see what the new year brings!.

As I close this message just in time to see the ball cascade down Times Square remember my only resolution for many years now is simply:

To be able to say I'm glad I did rather than I wish I had!

On that note, goodnight, God Bless, and Happy New Year!
Liz

dobbsjones@gmail.com

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