OffKilter

It's been months and months since I finished my cancer treatment.  I've been off work for almost a year now and I ended my radiation torture months and months ago.  How naive I was thinking that I'd be back to work in November.  Or January.  Even though I couldn't eat or drink, I wanted to get back to Normal so badly and figured that if it could get that bad that fast it could get better just as quick. 

Now I wonder and worry if Normal is slipping away from me.  The physical scars are fading, the abuse heaped on those poor mouth and throat tissues is pretty well healed and I'm adjusted to my new normal.  Coca Cola still taste like sewage, I'd just as soon drink battery acid as have a glass of orange juice, but I'm pretty much put back together again.  Except this little Humpty Dumpty seems to have lost her head.  

It's so hard to explain, even to myself, what it's like to lose that edge that you had, that glimmer of brightness or quickness in your thinking.  Ideas would link for me, I'd see connections and I took my mind for granted.  I'd write, just for me, I loved to pour my heart out through my fingertips... and the words came easily.  The grammar, not so  much, but the words would just flow.  

Now...  now each word is stuck in molasses.  Thoughts don't run together, they slowly seep through a fog and get lost and swirled with other thoughts.  Reading has become a chore.  Instead of losing myself in a book, I labour through.  

I so remember that tired working mommy feeling, that overwhelmed feeling of being ON, tired, on edge and ON all the time.  Having that rolodex in my head of every appointment, every schedule, every deadline, every colleague that needed a push, every relationship to nurture.  I'd love to have the capacity, the endurance, the brain power to feel that again.  What I feel now is different, so very different.  It's a heaviness in my head and a tired that won't go.  A tired that makes you slow and stupid ... that pounds at the back of your head and sits in your bones.  I don't know where my synapses went, and what's worse, I worry that they are gone for good.  The Doctors say vaguely reassuring words, but they don't know why this happens to some people or what causes it.

For me, because I'm a complicated girl, and nothing can be simple, it's even less clear because there are three pieces to my confusion puzzle.  Is it from the radiation treatment?  Or is it that plus stress from my husband moving out due to his struggles with the ugly black dog in his head?  Or, just to kick a girl when she is down, is it the conveniently timed menopause?  

So I try and build around the edges of this foggy, grey puzzle.  Right now, this blog post is one piece of this puzzle.  If I can just put together one little corner of the puzzle, just a few pieces that would click together then maybe I'll start to believe that I can get myself put back together again... 

Last year I went to Wonderland with my girls for a cheerleading competition and I rode a huge, scary Roller coaster, aptly named the Behemoth.  This most ridiculous of steel monstrosities drags you to the top of the world and then lets you plunge down, too scared to even scream, in a type of free fall torture where you spend three minutes of your life in terror until you finally reach the end and let out what remains of your shaky, panicky breath.  

On that slow creep up to the tippity top, while my blood pounding through my veins, I remember thinking - I want to go back in time - I will not choose to go on this ride.  I just need to go back 4 minutes.  Okay 3 minutes will do.  The anticipation of the plunge down, the build up of fear, that is the hardest part.  The plunge down, that is when you make your peace with God, and figure you will either survive or be one of those splatted safety statistics.  

That is what having cancer is like.  You get some news, then you wait - to find out more, to have surgery booked, to have treatments booked.  This last little bit, this lead up to radiation, the wondering about whether the recent biopsy would yield negative news, these weeks have felt like a slow, jerky creep up to the top of that Behemoth.  I'm hoping that my anticipation of what radiation will have in store for me will be worse than the reality.  My little medical village, the doctors, nurses, naturpath, nutritionist - all tell me how sensitive the tissues of the mouth are.  How difficult this radiation is.  Each and every time I'm told about how bad it will be, it feels like another creaky jolt upwards, just another foot higher.  I don't even know when this roller coaster will start going down.  Nothing has been set yet, so I continue to build up the anticipation, on hold, and pondering the bad things promised once I reach the top.  

I can take solace that lately I have been getting good news lately rather than bad.  I went today to get my biopsy results.  Only to find out that my appointment was cancelled, and the Doctor was supposed to call me to tell me that she wouldn't need to see me until September.  My biopsy was fine.  I'll take that any day over the recent weekly appointments to check the little spots on my tongue that don't look quite right.  And, late last week I heard that I won't need chemotherapy, that my cancer isn't advanced enough for me to be eligible for the clinical trial.  More good news.  

Those bits of good news, of progress in the right direction, I'm hoping that they will foreshadow a radiation marathon that is less unpleasant than promised.  Until then I continue my creaky ascent - and try hard not to pack a backpack and run away to Mexico or Costa Rico.  

Dear select readers, how many of you related to that first image?  Hands up ladies!  Knowing my friends who might read this, I'm betting many of you.  Now, this image is a pitch for some supplements, but I found it because I've been reading a book at the recommendation of my newly found cancer naturpath, "When the body says NO" by Gabor Mate.  It's been a really hard slog for me to get through.  Not because it's isn't well written or interesting, rather because I read a few pages and stutter.  And reflect.  And put the book down to think a little about why it keeps making me react.  I'm reacting more to this book that even the Sheryl Sandberg leadership manifesto that made my blood boil.  

I'm not through the book yet and I keep seeing myself in it, over and over again.  The author is a palliative care doctor, and he writes from his own experiences with patients with diseases such as MS, Crohns, cancer and the like.  The book explains some of the research done in an area called Psychoneuroimmunology.  It is an area of study that focuses on the connection between the mind and the nervous and immune systems of the human body.  When I think of the mind-body connection, I always think of my mother, who would always, always, get a horrible cold  or some ailment whenever there was a funeral that she was supposed to attend.  It was never a feigned illness.  She hated going to the funerals and her body, without fail, was happy to find a reason to make it impossible for her to attend. 

This book, while careful not to blame the patient, pulls on the connecting threads between chronic stress, repression of emotions and these life altering, life reducing or life ending illnesses.  It begins to explain the connections between our complicated immune system and  our psychological state.  Much of the book focuses on the childhood experiences and stresses of the patients.  Some is rubbing me the wrong way as I've never met a perfect parent, perfect family or perfect child.  I've always felt that we are all the victims and benefactors of our upbringing, and we all have the choice to benefit from the good and learn from the bad. 

But if you start to think this through, if chronic stress or rather an inability to cope with chronic stress causes not just your run of the mill, depressed immune system, cold/flu, your hypertension or migraines, but also diseases like cancer or MS, what do we do with that?   For someone like me, where I have a disease that from a statistical point of view, I shouldn't have, it seems logical to blame stress.  

It's a pretty easy leap, really more of a hop, to say that the unremitting stress of last year and the feeling of being totally out of control in my life was a catalyst for an immune system that was not up to the job of catching the growing cancer cells.  But if how we are built makes us sick, what do we do?  If your life is built on loyalty, family and love, what do you do?  Unmake ourselves?  Be people that we aren't?   

I think often about something that a former colleague used to say to me ALL the time.  Whether talking about work or home, just about every day, he would say "Yes, it's a problem, but it's not YOUR problem".  I've always wanted to solve problems, jump in and carve a path forward.  Push for a resolution, a decision, a direction.  But in reflecting on this connection and the few studies that have shown personality types being associated with diseases, I am starting to ask myself some uncomfortable questions.

I've spent a lifetime trying to live up to my expectations for myself, and trying to drive down my expectations of others.  Maybe I need to find a new balance.  

More later as I continue reading and reflecting!  

Pre-cancer my little family was in the midst of a completely different type of health crisis.  We were on a long and uphill road.  You see, a little over a year ago, my husband found that life - kids, work, marriage was getting too hard.  And, he started to head off the rails a little bit.  Then more than a little bit.  Then little things became huge things and worry became his whole, entire life.  

We learned a valuable lesson about the little pink pills that Doctors prescribe for folks who start to struggle.  For 95% of folks, those little pink or blue pills help, take the edge off, reset some of that muddled brain chemistry.  And, then there is the 5%.  And, who knows if you are in the majority until you start to pop those little pills.  And, if you aren't - well, it's really hard for friends, family and physicians to know if it's the pills fault, or if you need a stronger pill. 

We ended up losing about a year to this process.  And, as I watched my husband completely and totally lose his way, and become someone I didn't like and didn't want to even know, I also saw into the hearts of those who were around us.  Sometimes egotistical, partially educated and grossly overconfident people can be extraordinarily dangerous.  When you feel like you are drowning, you will grab onto the nearest hunk of floating debris.  And, cling to it, especially if the promise is health, happiness, or, the possibility of "self-actualization".  

Lucky for us, we had people who stood, like the old growth trees in B.C., just stood there and said the same thing hundreds and thousands of times.  Finally, with an old, brusque Doctor's help, we started to break free from the tangled and stinking forest we were in, and the further he got away from the toxically opinionated, those who pushed him towards a path that fit their world view and their stunted understanding of human nature, psychology, and love, the better he felt.

But we were just on the path out, he was still not my guy.  He wasn't the person I married.  He wasn't my solid landing place as I was the rest of my family's "rock", the guy who was the 'super dad' of our neighbourhood, this kindest of men.  

Then I got sick.  And, he seems to have woken up.  Is it guilt?  Is it a sense that he has no choice?  Have the stars simply aligned at the right time?  I truly don't know, but can say that having him back is a godsend. 

I can't trust that he'll stay as he is.  And, the memory of all that has happened rests very close to the surface, dangerously close more often then not.  People say - he was sick, or "they" were just trying to help - but words and actions carry with them real costs and real consequences.  No matter what the slogans say.  

But at least he seems to be himself, for now.  And, so it seems that the best cure for anxiety turned out to be a good healthy dose of cancer.  It's probably not a recommended treatment - but hey, it seems to work!

Between love and hate. 

Between helping someone and hurting them.

Between waiting it out and being stuck.

Nobody ever tells you how to know what side of the line you are on.  Say you have a friend or relative who is an alcoholic.  And, they end up literally homeless and you take them in, and they start seeking treatment.  That's supportive and kind-hearted.  Right?  That is NOT enabling.  Right?  

Well, what if they aren't really serious about getting that help.  Oops, in a nanosecond you've turned straight from Mother Teresa into a big old enabler.  And, a chorus of people will say "you should have known better".  But how were you supposed to know that?  And, when is it ever that simple?

Inside everyone's head is a mess of dreams and demons.  Ambitions and insecurities.  And, sometimes people need a helping hand to sort it out.  

It's a question I've been thinking a lot about lately - if someone is stuck in a pattern of behaviour that clearly isn't working, then something needs to change.  But maybe time is what's needed.  Maybe it's a matter of waiting it out.  

Maybe after this valley will be a glorious hill filled with sunshine.  And daisies.  And, even lollipops.  Just like the sound of music.  Only better.

Then again, maybe not.