Roller Coasters in Rabbit Holes?

Here I sit on this leap day 2016 looking out the window at the plethora of birds spying around the deck of our next door neighbours who, with daring regularity, put out birdseed and other delicacies for the birds and squirrels, yes squirrels to dine on throughout the winter months.

 The neighbours' deck rather than our own is where we'd prefer to see squirrels become familiar with local surroundings.  With Mike working outside regularly repairing the infrastructure of Ma Bell, he sees firsthand the absolute destruction that can be wreaked by these furry tailed creatures of God.

The best part for me is how many blue jays have made this little piece of earth their winter resort, like a ski chalet on a gorgeous sunny but cold day.  The symbolism of seeing blue jays is directly related to my Dad who passed away in October 2004.  His long time saying was 'I may not have caught my bluebird in life but I've certainly seen it many times.'  The reason for including blue jays in that image is a huge bird in our backyard just after Dad passed away.  I like to think when I see one and especially when they hang around, that my Dad is close by watching over us.

Occasionally I get a 'thought drop' which I can only describe as a thought that simply drops into my mind out of seemingly nowhere.  These often come with the sighting of those squawking blue neighbours.

A roller coaster inside a rabbit hole is a pretty good description of the last couple of weeks in my medical adventures.  On February 17th I had a message from my oncologist that she had taken my case to 'conference' where the medical team congregate to discuss individual cases and plan next steps.  After the ultrasound experience, there were team members who weren't totally convinced that the mass in my liver was all tumour.  Ok, well rather than a free fall, seems like we may have a brief reprieve from the downward slide.

 The decision was to do another cat scan, take the results to the next weekly conference and from there, collectively develop the plan.

On Monday February 11th off I went to another imaging experience, not an image makeover, although a makeover would be a more satisfying and pampering activity.  Hey, maybe I could just pretend that as I slide in and out of the tubular piece of high tech equipment, that the radiation was magically removing wrinkles and pulling in those sagging spots!  Good visual to remember for another time!

My case went to conference the next morning and included all physicians of the gyney oncology team, the team nurse, a radiation oncologist and a chemo consultant.  I had a 3 p.m. appointment that day to review the results and confirm a plan.  My doc came in with the team nurse and I somehow sensed the outcome even before we began.  Maybe because it wasn't as upbeat and humorous as in the past.

The stage was set for a realistic, more serious discussion hence we all donned our dramatic demeanours rather than that of slapstick comedy.

To this point we'd gone from mass but no tumour to all tumour, growing rapidly, now to maybe not all tumour but still a concern.  One wondered if it was less serious than originally thought regarding the presence of a tumour.  That being it may have started that way, but with the blood thinners, the possibility still exists that the mass was bled into from a possible leak from one vein or another.  What continues to be unknown is how much might be tumour and how much simply a 'dead black hole' rather than being out in the universe was existing in the midst of my abdomen.  It's quite possible that the darkest portion of the invader is the remnants of cancer cells mixed with old blood that has had its supply cut off.

On reviewing an image of the liver landscape, we could clearly see the black hole being referred to along with a lighter area and then a surrounding layer of what one could describe as light fluffy clouds.  It's those clouds that are important as it's believed that they may be the source of the spreading inclement weather pattern.

While some of the smaller lesions, the original culprits that were being treated by the 'Maggie Meds' have shrunk, something has changed to cause this latest intruder to take up space like a squatter in an open field.   By the way, Maggie has now been fully retired, which, on the upside, could be good news as we watch to see if she takes her leave and takes some of her weight with her.  If nothing else, my appetite should shrink which in turn could help drop some of these excess pounds.

It has been decided that I will go back on chemo with smaller weekly treatments rather than a larger monthly dose.  Because it's secreted through the liver, there's no need to assault it further in this seeming galactic battle.  I'm waiting for a call to go in and sign the necessary paperwork possibly as early as tomorrow and then have the first treatment Wednesday.  It's a drug that I've had before and tolerated well.

The psychological trauma of losing my hair is no longer a looming nightmare; my wig remains clean, protected and ready for action whenever called upon for active duty.

The protocol will be once a week for three weeks then a week off.  After three cycles of three weeks, a further review including a scan as needed will be done to determine the chemo's effectiveness.  We learned of another whole grading scheme around tumours based on their growth patterns which dictates the potential effectiveness of the treatments.  I've decided though, not to go through a lengthy explanation of that dimension at this time.  Suffice it to say, one of the concerns, which is hard to believe, is that my cells may need to be faster growing to respond well to the chemo.  We are going to take the approach that our latest intruder is doing exactly that and will respond accordingly.  Hey, it might be opportune to give it a name.  For whatever reason I think this time it should have a 'male' name or maybe even gender neutral.

As you're reading this you may be wondering, you may even be experiencing a niggling bit of anxiety about the length of time it's taking to get things moving and underway in our next course of treatment.  I understand if you're not, being an objective observer, but I have been and so maybe I'm just projecting my discomfort on as a protective mechanism.  Here is the calming antidote, once heard, makes much sense and chases the bats out of the belfry so to speak.  I've been advised that even if the decision was made much earlier, treatment using chemotherapy would not have started two months ago when this situation first came to light.  The reason?  I'm not sick enough.  The backup to that is, we are all on the same side in terms of long range future which is, that what I have now is not medically curable.

 That means they are not going to jump all over everything in an effort to stomp out some imaginary fire.  No, we are taking a much more controlled approach that has a broader view of providing quality of life, reducing symptoms and taking the necessary actions to prolong my life as much as possible.  In other words they are not going to medicate me with something that can make me feel worse than I feel without the medication.  What surprises even me is that the longer this goes on, the more accustomed I become to the concept and little by little, am accepting of whatever is to come.  Until now I have been so blessed to be asymptomatic which I touched on in my last post, meaning very little in the way of major impediments of daily living albeit, daily living meaning a far less active and involved life style.  Reduction of energy, mental capacity and ability to cope with stress are all very obvious changes that I've had to become used to along my adventures.

Having said all that, last Thursday I took a ride on a roller coaster inside this rabbit hole that I wasn't aware even existed.  Starting the day off in normal fashion, I attended mass at 8:30 which is great since you're back home again by 9 and completed my daily Bible readings.  Then sometime between 9 and 10 out of nowhere I developed a highly acute pain in my upper left abdomen.  Upper right I may have understood and linked to my liver.

After resting for a while, or trying to, I decided that a trip to the pool might bring some relief.  So off I went barely even able to push the clutch to the floor and start the car let alone change gears.  Changing in slow motion, I made it into the warm pool at the Y and started my walk ever so gingerly, hoping the warmth and the movement might bring some magical relief.  Of course that was not meant to be and by the time I got out, I could barely shuffle my way back to the change room with a couple of people along the way asking if I was ok.  This was one time I couldn't fake and say I was fine.  I wasn't fine and not even close to being fine.  Eventually I made it to the front entrance with the help of a Y instructor knowing full well I was not going to be driving home.  A call to the oncologist's office was the need to be examined in order to assess and determine the source of the pain.  A woman I sometimes walk with and her husband happened by so I asked them for ride to KGH which is where my docs have their offices. This was about 2 p.m.  I was seen relatively quickly having phoned ahead but couldn't lie down for an abdominal examination. A small orange pill was to take away the bulk of the pain in order to do X-rays but barely moved the pain meter from a resounding 9 of 10 on the scale.   I was told later the dose I was receiving was 4 times that of a starting dose which they usually use.   As it turned out, the decision was made that yet another cat scan was to be done even though I'd just had one 3 days earlier.  From 2-7pm I sat in a wheelchair being the only position to provide any relative relief.  An I.V. had been started with doses of hydromorphone being dispensed by the nurse regularly with a fairly intense burning sensation on its way to my bloodstream.
The cat scan revealed nothing new since Monday's report yet pain control was being elusive to say the least.  I was invited at that point to have a sleepover at the hospital to continue the efforts of pain management. Imagine, being under the care of the gyney team (at least that's my theory) I was in a private room with a door that closed.  About 7 a.m. Friday morning three residents entered my room to confirm nothing new showed up on the cat scan and that the consensus was that they could not find the source of the pain or place of origin.  It seems to be in the area of my spleen but once again I've chosen not to go searching for answers on the internet.  I must admit I'm more than a little baffled that one could have such debilitating pain without identifiable cause but that seems to be the case.

I'm adding a little postscript to this post today, March 1st to say that it seems day by day I've been feeling better, still taking hydromorphone every four hours. Also, it's been confirmed that I will start weekly chemo treatments tomorrow, Wednesday, March 2nd.

Now to the confessions of my misbehaviour.  Mike had an appointment in Ottawa for 2 p.m. so there was no point disturbing him since he was two hours away and I didn't know anything about anything.  Around 4:30 I texted Mike to ask him to tell me when he was on his way home and I texted Matt asking what shift he was working.  I've learned I have a very rigid internal protocol around contacting and advising family members of any medical misadventure.  First Mike, then Matt, and, for the most part, they can take it from there to contact my brother, the other kids, extended family and the like.

Both Mike and Matt asked how I was feeling and if everything was ok.  My reply?  'Sort of.  Everything is under control' which it truly was.  I couldn't be in better hands than my physicians and neither of them could get to my side to sit and wait when they were away or working.  My dear friend Brenda would easily have been able to make time to support me but oh no, she texted back that she was in a board meeting so I didn't wave the white flag to her either.

As things turn out, I have been severely but lovingly reprimanded that it is not my decision to presume what others might say or do in such circumstances.  My role and my only role is to text someone to alert them to any situation and let them make their own decisions from there.  Funny thing was, I felt like I was in some kind of cyber game texting from one to the other knowing full well that I would be upset at my behaviour had any of them done what I did.  My efforts to 'protect them' led to more anxiety, confusion and upset than was necessary but I won't go into details here.

These last couple of weeks have left little room to ponder and explore much outside of the medical side of my adventures in prayer and medicine other than to say I sure have been praying a lot especially with Lent upon us which is a time to allow increased time for prayer and meditation.

On a closing note, I must tell you about a family doc appt  scheduled for Tuesday, February 16th which of course I made no attempt to attend having called early to cancel.
By mid morning with likely about 20-25 cm of snow on the back deck and everywhere else, I wondered about the possibility of having a telephone appointment so I called and left a message.  The resident I had seen several times before called back and we did just that.

Since I don't typically have any physical examinations, there really was no reason a phone call wouldn't suffice.  It went very well, we are able to ensure my file with their office was updated and that I would make a further appointment if and as needed.

Fast forward to yesterday, Sunday, February 28th when I mustered up all the energy I had to attend a show at the Grand Theatre featuring the Cat in the Hat.  An event I couldn't miss if at all possible since 4 grandchildren were going to be in attendance.  Tickets to the theatre were our Christmas gift to these little people all of whom have plenty of material things hence our attempt at 'memory making'.

While there didn't we pass my family doctor and her family.  My reply to her asking how I was - was simply that I'd had a sleep over at KGH.  We let it go at that and went on our separate ways.  While writing this post today, I received a call from my family doctor's office to see if I wanted to set an appointment for a review although the receptionist calling had no idea why.  I explained the interaction and my deep feelings of appreciation for her thoughtfulness (meanwhile she being the family doc is home with a sick child today).  At the show, my radiation oncologist was sitting in the row ahead of us with her two children.  We laughingly acknowledged that's where we see one another on a fairly regular basis!

By the time I write my next post, I will have likely started chemo treatments so I will be able to let you know how the reaction will have been.  As I try to pray every day, my life is in God's hands to do with what He Will, not mine to try to coerce into happening what I perceive as the best thing for me.

Until next time, thank you for your interest and more importantly for your prayers, or white light or positive energy or whatever else you may believe is beneficial.  I truly appreciate your virtual presence in my life.

Take care and God Bless,
Hugs,
Liz

dobbsjones@gmail.com

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