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."