Slip Sliding and Sleeping the Time Away

On my last post I filled you in on the latest slide down the rabbit hole of discovering a blood clot behind my right knee.  The immediate treatment is an injection of blood thinners that is given in doses related to the patient's weight.  Maggie (my 80 pound weight gain) tipped the scale resulting in me receiving the maximum dose of 18,000 units a dayg.

I was sent home prescription in hand for a thirty day supply of this almost magical formula that would cease and desist further clots from forming and hopefully give my body time to absorb the fiend in my leg before it develops a mind of its own and decides to take a trip through my veins.

November 3rd brought appointments with both my family doc and my oncologist, both scheduled providentially on the same day and so soon after this latest adventure.  My family doc discussed the possibility of options to move to an oral medication - yes I know you're likely thinking of Warfarin, more commonly known as rat poison, but apparently there are newer drugs out since then.  With Wafarin and I think Cumedin, you still have to have your blood checked regularly almost like the oil in your car to make sure it's in the right range and will continue to allow smooth operation of your vehicle.

 Apparently there are now newer medications that don't required the same level of checking, maybe because they're more like a synthetic oil that can be changed every 6 months instead of every 5,000km!  

Since I had received a 30 day prescription for Fragmin (no not Fracking) that reflected a mere cost of almost $1400, I agreed that this clear coloured gold better not be wasted, and regardless of the longer term decision, I would either self inject or have my resident nurse Michael do the dirty deed.  Oh my goodness, after the first few days of shots, it looked like a clock was forming on my abdomen thanks to the bruises that were forming as a result of Mike's handiwork.  The pain that came along with the injections is a topic for another discussion and needless to say I have learned to do my own self medication.  I dare not speak too negatively of my willing caregiver though, in the event  that he surrenders and leaves me to my own devices to administer  my shots.  The greatest challenge of course is that I can't see below my ever expanding girth to find a suitable spot!  

We agreed at my appointment that I would consult my oncologist at my afternoon appointment and determine the best course of action.  At that meeting, she presented me with a chocolate bar (from Cooke's no less) that made her think of me so she purchased it as the name on it was Dobs Dobs (okay so one 'b' was missing but the thought was ever so sweet, never mind the taste of the chocolate).

I won't repeat what she said upon reading the note from my family doc that a blood clot had been found.  While the meds I'm on can cause blood clots, it's usually within the first month or so, not two years later.  The overriding concern is that something has changed relative to my underlying illness but we are not able to determine what has changed without a cat scan.  The decision was made jointly that a scan would be ordered asap.  Then oncologist's adamant decision on blood thinners was that I will have to remain on the injections indefinitely.  There is not enough evidence with the newer drugs that they would be effective in a case such as mine.  She also suggested I go off the water pills as my kidney function numbers have been creeping up.  I also had my Maggie meds cut in half.  I'm a little nervous about that decision but am keeping in my mind that God is working through my docs and putting the ones I need in front of me.  Is it a test of trust?  Maybe, so I will just go with it.  Besides, what's the worst it can do?  It can only affect the quality of my life one way or another because I already have a date on my exit ticket and as I've said before, nothing is going to change that date.

Before leaving the cancer centre I had blood work done with a copy sent to my family doc.  I have  been highly impressed with the patient centred team approach being taken between primary and specialized care.  There seems to be one good thing about being on blood thinners, that it's unlikely I will have a sudden heart attack.  Or at least that's what I think since a basic instruction is to NOT take aspirin as it could thin the blood even further.

  There seems to be a bad thing about being on blood thinners, that internal bleeding could create all sorts of problems.  Like even banging yourself can lead to bleeding that you can't see.  It might just show up in your bodily evacuations, a signal that a leak has sprung somewhere in the bodily landscape.

More blood work last Friday led to a telephone call this morning that my hemoglobin has dropped 12 points in a week and has any blood shown up in my bodily evacuations.  No, and no major bruising, only the fading clock on my belly.  One good thing is that the afternoon I spent sleeping on the couch last Friday, to a depth of having vivid dreams, was related to the decline in red blood cells and not just my imagined sleepiness.

Another good thing is the progress I'm making in being able to read and pay attention to my own body.   Whatever the outcome, I have been able to ride the wave of very positive cat scan results for a year and a half now.  I recall the days of saying "If I didn't know better, I'd think I was well."

One of the typical, daily comments and conversations at the pool of course is the temperature of the water and how far it might be deviating from the posted temperature on the white board.  Most people in my age category and older always have a sense that the water is colder than claimed.  As these last few weeks have become a little less stable,  it would be foolish to say that I am in a state of peaceful calm and bliss.  That being said though, I find myself becoming much more deliberate in making efforts to think and speak in positive tones.  While no longer able to identify with Tigger,  even though blue is my favourite colour, Eeyore will not overtake my outlook or world.

Back to the pool conversation, recently a small group - probably three of us including the lifeguard were able to consider that while the temperature of the water might seem to fluctuate, we also wondered how much our own physical state affected our perception of the cold or warmth.

One day we feel great, another we didn't get enough rest or are feeling less than optimal so why would we take our frustration out on the water when we are going to spend time in one of the best zen like environments we can find  especially at this time of year.

While we have a few things on between now and the end of the month, it's admittedly difficult to even consider 'keeping busy' in the face of an uncertain future.  We'd like to remain positive without projecting a Pollyanna image but at the same time keep life as normal as possible knowing the days pass and for some the best coping mechanism is to stick to routine.  If we were to expect life to stop for everyone around us as we navigate the speed bumps of life, it would be a disruptive and unfair ride for them.  During periods of uncertainty, rather than projecting the victim, it might be more helpful to turn our eyes upward and have as many conversations with God as necessary (or whatever your higher power might be), pouring out anything and everything that is preventing us from having peaceful and contented day.  Ok, now I just have to get on the other side of the computer and read what I've written and take it to heart.

Until next time, find joy in your days and spend your energy on things that matter.  My next post will likely be after the 1st of December in order that I can update you on the status of the results of the cat scan.

Take care and thank you for your prayers and support.
Hugs,
Liz

dobbsjones@gmail.com

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

Whoosh - down another Rabbit Hole - well maybe just a Bunny Hole!

I've shared my personal intention with you in the past but at this time it bears repeating given that the experience of having slid down yet another rabbit hole since my last post.  When praying, especially intercessory prayers through the Saints to God, we typically articulate what we are praying for.  Many people know for example that St. Anthony is the Patron Saint of lost items and many people ask his help when trying to locate a missing item.

Some of you may be chuckling, or even scoffing, but I can tell you that in some divine way, it does work.

As I've practiced Ignatian Spirituality based on the life and works of St. Ignatius of Loyola, he promoted 'praying with indifference'.  Well just what does that mean you might ask!  In my own case, as an example, rather than praying for a cure for my illness,  I pray:

"FOR TOTAL ACCEPTANCE OF GOD'S WILL FOR ALL ASPECTS OF MY LIFE, WITH A WISE AND UNDERSTANDING HEART."  (my intention whenever praying directly to God/Jesus or indirectly through the Saints)

For me, this form of prayer removes me from the driver's seat in my car of life and squarely places God (and Jesus) into the seat of responsibility for happens to me.  

As my faith and trust grows, the easier the ride becomes with this past week being a case in point.

Since Thanksgiving I've felt like I'm retaining extra fluid in my abdomen and legs, then further developing a tender spot on the inside of my right calf that started turning pink.  Rather than leave it and possibly get caught in the melee of after hours or the urgent care centre, I thought the prudent thing to do was call my family doc.  Had I felt the need to attend an after hours clinic, all I could imagine is the look on the poor faces of the care team, wondering just what to do with a case as complicated as mine and most likely being shuffled off to Emerg anyway.

While my doc had no appointments for another 2 weeks (I have one tomorrow from a previous booking), on asking to speak to someone I was able to leave a message on the nurses' line.  A call back in less than 30 minutes led to going in at 2:30 the same day, a close examination and a referral for an ultrasound for 4 p.m. on the off chance that I had developed a blood clot.  Off I toddled to KGH radiology, had the ultrasound and prepared to head home.

The nurse and doc came in to say that in fact I did have a blood clot meaning the folks in Emerg would be waiting for my arrival to start treatment immediately. I, in the meantime had my coat on ready to head home, thinking it was just a good measure of precaution given the risk and seriousness had a clot been found.

All this background to tell you that I found myself observing my own reactions to this information within the context of my personal intention.  It was quite profound to say the least.  What, in the past, would have been an immediate and vertical trip into anxiety orbit, complete with an impending visit from the Grim Reaper even though Halloween was a few days away, along with my life flashing before my eyes, in fact was a reaction so calm, I almost wondered who was actually listening to this explanation and what they had done with my old self.

 Even as I write this, right now, my heart remains airy and light with an overall sense of 'being in the right hands' regardless of the outcome.

The greatest risk, as we all know, is that a blood clot might move, or a piece break off, travelling in the express lanes to the lungs which would create a serious traffic jam in my overall bodily function, potentially even sending me to the scrap heap.  We passed the basic information on to family simply in case of any sudden event, that they wouldn't be caught totally off guard.  I know and understand that cancer patients are at a higher risk of clots than the normal population but had no idea why.  The explanation provided by the resident in Emerg was that individuals living with 'active' cancer also live with their bodies in a constant state of inflammation. That insight better helps me understand the hills and valleys that we traverse while managing a chronic illness.  In my opinion, one of the most important aspects is to become intimately familiar with our own bodies and to listen to that little voice in our gut that suggests we take action if and as necessary.  Ignoring or putting off can open up rabbit holes much larger than we anticipated and negatively impact our quality of life.  Again, going back to this case in point, at least the clot is behind my right knee, not up in the groin area which apparently can increase the overall risk.  It's interesting how, as we place greater trust in our own higher power, that we also seem to gain greater confidence and trust in ourselves to take direction from within.

As my days have become quiet, with many less distractions, I'm gaining a sense of peace in slowly going through and catching up on long ignored small tasks.  Calling people, for whatever reason, or rather the inability to call, continues to mystify me.

It's a relatively short list, all people I'm most fond of, and yet it's like my hand is paralyzed, totally unable to pick up that hand held black instrument that will connect me to these wonderful friends.  My little plan of getting it done by the end of October didn't work so I will set a new deadline of mid November.  Of course the extremely gorgeous weather will be yet another distraction, enticing my to try to get outdoors and soak up the warmth and sunshine while I can.  Hey, wait a minute, who says I can't drag out one of those plastic Adirondack chairs, settle myself nicely in a snug jacket or blanket and use my other hand to press those little buttons that will magically put me in touch with individuals I've promised myself I would call. Could just be a plan over the next few days.

Another long ignored activity for me is on the creative side of my brain.  For as long as I can remember I have dabbled in various crafts and creations, never taking a deep seated, long term interest in any one thing, but rather trying this, that and the other thing.  Maybe it was just to see if I could do whatever the project was, and whether yes or no, continue to move on to the next thing.  The interesting thought that comes to mind is the dual nature of my brain related to such things.  On one hand, if I was successful, I didn't necessarily need to continue proving myself (??? not sure where that thought came from) and could easily move on.  On the other hand, if I wasn't pleased with the outcome, the ease with which I could turn my back and look for something new could surprise me.  As I ponder that, it seems that there were not too many crafty things that didn't turn out.

 Where the danger lies for me is in the vast jungle of the kitchen that includes both cooking and baking.  I once used a clay baker to make a chicken which didn't turn out perfect first time, only to banish that poor instrument to the basement, sadly destined for the purge pile.  Another time, as a teen, I tried to make a homemade apple pie - I can still remember the thick, chalky pastry that was intended to be a light, flaky crust.  That's it, never another pie to be made by my hands and I don't believe I ever have.  How stubborn is that!  Although, to offer some small defence, not having a sweet tooth didn't help matters much.  As well, a self proclaimed domestic diva, I have never considered as an asset. I'm always amazed at how people a) actually enjoy time in the kitchen and find it almost a 'play time' and b) happily go through recipes like a child with a new toy looking for something new to make.  Couple that with trying new recipes on company - well you might as well give me a sedative before I even begin!

God sure has a sense of humour!  In the midst of this writing, I heard the mail person drop our correspondence into the mail box.  Yes, we still have home delivery although having had to use a community mailbox for 15 years, it doesn't hold the same emotional attachment for me as so many others.  The funny thing is that in today's mail is a thank you letter from our dear, dear friends at the Sisters of Providence Motherhouse (yes nuns)

for a recent visit and delivery of believe it or not, home made treats - my specialty - home made peanut brittle.

Enclosed with the letter is a recipe for Best Rum Cake Ever.  Here I'm thinking 'Oh my, after my ranting I'm actually going to have to try my hand at baking.  After all, if the nuns are sending a recipe, I'd better try it out'.  It goes something like this:

List of ingredients and then the directions for making the cake.
Before you start, sample the rum for quality.  Good, isn't it?  Now go ahead.  Select a large mixing bowl, measuring cup, etc.  Check the rum again.  It must be just right.  To be sure rum is of the highest quality, pour one level cup of rum into a glass and drink it as fast as you can.  Repeat.  With an electric mixer, heat 1 cup of butter is a large fluffy bowl.  Add 1 teaspoon of thugar and beat again.  Meanwhile, make sure that the rum is of the highest quality.   Try another cup.

Add two arge leggs, 2 cups fried suit and beat till high.  If druit gets thick in beaters, just pry it loose with a drewscriver.

Sample the rum again, checking for tenscisticity.  Next. sift 3 cups of pepper or sale (it really doesn't matter).  Sample the rum again.

Sift 1/2 pint of lemon juice.  Fold in chopped butter and strained nuts.  Add 1 babble spoon of brown thugar, or whatever colour you can find.  Wix mell.  Crease oven and turn cake pan to 350 grredees.  Now pour the whole mess into the coven and ake.  Check the rum again - and go to ged.

Oh my gosh, the surprises that come our way when we are open and have even just a little sense of humour.   Despite the place I am in life these days, one thing I can say is that I'm learning to take things far less seriously, far less to heart, far less personally.  Rather than thrashing about in the sea of life, being panic stricken for all that might happen, I'm enjoying a rather leisurely, sun soaked ride on a full length flotation device, gently bobbing along leaving me carefree while enjoying the passing of each new day.

I plan to share an initiative that we've taken on as a parish community in sponsoring a refugee family from Syria.  My personal involvement will be modest at best but while I was discerning what role I might take, again, the lighthearted feeling that comes with doing something outside oneself, catching the crest of a much larger, global wave of need is compelling.

 Much like the story of the little boy on the beach of thousands of starfish, patiently throwing them, one by one, back to the sea.  Someone comes along only to comment that there are far too many to make a difference, to which the boy replied, as he tossed another back in the water 'It made a difference to that one'.  And so we too have the opportunity to make a difference 'to one family' and remain open to how we will accomplish that goal.

Until next time, enjoy the mild weather, stay open to what surprises life may hold for you and remember, even during the tough times, especially during the tough times, that's when we are closest to God.

Take care and God Bless,
Hugs
Liz

Liz Dobbs Jones
dobbsjones@gmail.com

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