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."