Tag Archives: rantings

The Ultimate Betrayal

We-stopped-looking-for-monsters-under-our-bed-whe

I cannot imagine any human betrayal as excruciating as a self-betrayal.

Imagine… your body, unbeknownst to you, makes an arbitrary decision to start producing antibodies, that will attack its own (YOUR OWN) tissue!  This attack will ultimately lead to the deterioration and in some cases to the total destruction of such tissue.

Wait… What?  Why would my body want to do that to me?  Aren’t we in this together?  Aren’t we a team?

Well, guess again…  because that is the hideous nature of an auto-immune disease/disorder.

It’s you, stabbing yourself in back, selling yourself out, double-crossing yourself.  Gives a whole new meaning to the phrase, “Go f**k yourself.”  

An auto-immune disease/disorder develops when your immune system, which normally defends your body against disease, decides that your healthy cells are foreign. As a result, your immune system then attacks the healthy cells.

Nice.

The ultimate betrayal.

You’d think this was a rare occurrence, right?  I mean only a freak of nature could have it’s own body decide to turn against itself, no?

Well, according to the American Autoimmune Related Diseases Association (AARDA) there are approximately 50 million Americans (20 percent of the population or one in five people) who suffer from auto-immune diseases.  Women are more likely than men to be affected; some estimates say that 75 percent of those affected, some 30 million people, are women! 

Ladies… What the hell are we doing to ourselves?  Or, maybe a better question is what the hell are we not doing for ourselves, that we should be doing? 

There’s a lot of speculation out there as to exactly what’s causing these deviant auto-immune diseases/disorders, but I don’t think a conclusive verdict is in.  The frontrunner, proposed triggers include:  

  • 1. Gluten
  • 2. Gluten-free grains
  • 3. Quinoa
  • 4. *Stress
  • 5. Toxins
  • 6. Sugar
  • 7. Chocolate
  • 8. Dairy
  • 9. Nightshades
  • 10. Small Intestinal Bacterial Overgrowth (SIBO)
  • 11. Weakened Microbiome (our highly sophisticated gut ecosystem)
  • 12. Leaky gut syndrome

*Unfortunately, not only does stress cause disease, but the disease itself  also causes  significant stress in the patients, creating a vicious cycle.  {Stress as a trigger}

Truth be told, I think there may be more possible causes, than there are auto-immune diseases/disorders! 

So, we (women) are a competitive lot, huh?  Just look at us competing with the men for all of the historically “male,” causes of death.  According to the CDC, the Leading Causes of Death (LCOD) in females, in the United States are as follows: 

…and now, it looks like we’re leading the pack in the unwanted acquisition of these complex and monstrous auto-immune diseases/disorders too. 

I don’t have any answers.  

In fact, I have unwittingly betrayed myself…  I have not one, but two auto-immune diseases that are kicking my ass! 

I’m embarrassed and hesitant to admit it, but this is the hardest “shit” I have had to deal with, EVER in my entire life.  And that includes dealing with the long term illness and subsequent  death of loved ones, dealing with having a child diagnosed with cancer, heartbreak, divorce, miscarriage, and marriages to assholes, you name it I experienced it! 

THIS IS WORSE.  

It feels like I’m in battle; I’m fighting for control of my body, my mind, my very being. The problem is, I’m in a battle against myself. 

How do I even fight this fight?

the_monster_in_me_by_autumnends Illustration by Anita Kolsen

Advertisements

Metamorphosis

Why yes, this is in fact an actual photograph of me holding onto what is left of my youth, my good health, and apparently a false sense of dignity.

The origins of the word metamorphosis are tied to the Greek word for transformation.  Transformation, is defined as a process by which one figure, expression, or function is converted into another one of similar value.  

I still remember stumbling across that first abyss, which turned out to be my first  metamorphosis;  losing the innocent and free-spirited essence of that young, prepubescent being.  Semi-realising that from a particular point on, I would be forever changed; knowing I was to be redefined, re-labeled and judged in my success (or failure) as a female, a woman, a sexual creature, a partner, or even mother!    

The changes that were thrust upon me way back then were much more abrupt and hideous than the ever constant, more subtle changes I have experienced in the last decade.

Back then, there were bumps and curves, pimples and strange monthly occurrences that sent my young, naive, free-spirited self into hiding forever!

A similar, but much different life force, emerged on the other side of that chasm;  she was quite peculiar, self-conscious, uncomfortable in her own skin, and wholly embarrassed by her very existence!

It took a long time for me to come to grips with that transformation and to shake off the grief and feelings of loss I had for that innocent lost in the process…

I found the whole experience, nothing short of heartbreaking. 

Years later, having reluctantly settled into my new, more womanly aura… I unexpectedly discovered it was time to transform once again.  This time, the evolution transformed me from a young, self-confident, vibrant, sexual creature into someone more gentle, mature, loving, giving and maternal.

Becoming a Mother was one of the most phenomenal sea changes EVER!

My entire existence took a full 180º and everything that I thought I believed about myself, about life and about unconditional love came under profound scrutiny and had to be  reconsidered, re-examined, re-defined and re-evaluated.

I found the whole experience, nothing short of miraculous. 

However, with the day-to-day drudgery of life, work, routine, boredom and sameness…  I  soon settled into this transmutation and it too became rote.

Years passed. I became numb, stagnant and seemingly unaltered.

Then, slowly, indistinctly, almost overlooked by me a new and quite insidious transformation began to take place; MENOPAUSE.  The biological clock stop, climacteric, the change of life.

This mutation of me was long and arduous.  It took its toll on me over many years.  It didn’t help that I was experiencing complex grief after having lost my brother. That just exacerbated the entire, relentless process.

As I teetered on the edge of this vortex, I could actually feel myself slipping away;  my youth, my vibrancy, my essence…  it oozed out slowly from each and every pore of my being into the dry, dead earth.

I found the whole experience, nothing short of hell.  

Ahhh, but alas, as all things do… this too passed.

I made tentative peace with the fact that I was ageing, I accepted the benefits in realising there would be no more children and I tried to see the humour in the fact that my body parts had acquired “minds” of their own and that “Yes,” even my spectacular breasts, were in fact subject to the laws of nature!

Reaching my 60s wasn’t as bad as I thought it would be.  I didn’t feel  particularly old, I didn’t think I looked particularly old and I didn’t have any of those pesky illnesses that  sometimes pop up when you’re in your late 50s or early 60s.

Things were okay… I felt like I was in control and cruising into my “golden years.”  

I would surely die before I got really old or god forbid sickly, right?  (See previous thoughts on my “best laid plans” to grow old gracefully >>> https://wp.me/p4O3T4-1Gn

Well, we are now a little more than 3 years on and as my Mom used to say,  “…the best laid plans of mice and men.” 

It’s a bit sad, somewhat scary and surprisingly liberating to write this next sentence…

“I truly believe I am standing on the threshold of what will be my final metamorphosis.”

I foresee three messy, overlapping, intertwined stages;

Old age.

Ill health.

Death.

The void I stand before now is, in and of itself, quite unique as I know I will eventually transition through to another place/level/state/consciousness… but I have absolutely no idea to where I will transition or what I will transition as (if anything);  but it is, to be sure, my final transformation.

Having recently lost the last surviving member of my original childhood family, along with turning 63 and being diagnosed with, not one, but two auto immune diseases that are quite literally kicking my ass, I think about old age, ill-health and death a lot!

I can no longer pretend that I will be unaffected from the ravages of time or that I, simply because I have willed it to be so, will be spared old age and ill-health and die gently and easily in the middle of the night.

Nope.

It’s far more probable that I too will have to navigate this black hole of uncertainly, deal with my frailties and accept the indignities of my own humanness.

Am I ready?  No

Am I scared?  Yes.

Can I do this?  Absolutely.

Why?   … because I believe this experience will be nothing short of mind-blowing! 

#bringiton

 

Back to the Business of Living

herself

With Arielle’s health crisis on somewhat of a more even keel for now, it’s time for me to get on with the business of living my life.  Oh, don’t get me wrong, this doesn’t mean I won’t be the annoying, overbearing, doting mother I have been, but will perhaps “dial it down” a bit and turn my attentions inward.

Now, more than ever I need to get back to the business of living my life.

You see, the last few months were supposed to be totally different… but isn’t that just like life, to take all of your well thought out plans and just fuck with them?

On May 3 (after 33.5 years) I left my job at American Express; I walked away, with intentions of starting a new life; a life with real purpose and meaning.  It was a bittersweet departure, because although there were many people there who I loved and cared about, the work was no longer fulfilling and the stress and political bullshit had taken a toll on my health. I walked away not knowing what I would do, but absolutely sure it was the right time to go and that there was something more important waiting for me. As it turned out, the timing was perfect and there was something much more important for me to do… 8 weeks after I left American Express, Arielle was diagnosed with cancer and my life was turned upside down!

However, during those 8 weeks and through a series of very fortunate events, I met some fascinating, beautiful, amazing people (you know who you are!) and was introduced to some new ideas and concepts about living (and about dying),which had sparked a new life and breath into me! The pieces of my new, purposeful life had all started to fall into place.

So now, it’s time for me to go back to the business of living my life and to continue to gather those bits and pieces. I need to pick up where I left off (before the cancer) and continue on that path, to see where it leads.

This blog has served me well,  as it has allowed me to rant and rage about my daughter’s cancer; it has taught me more about myself than I ever would have dreamed possible; and most importantly it has shown me just how much love, kindness and compassion there is out there, within all of those who surround me (You know who you are!)  The outpouring of love and concern for me and my family has been overwhelming and for that I thank you… I may never be able to pay you back, but I can certainly “pay it forward,” and that I promise to do!

I’ll continue to post updates about Arielle’s heath, because I know many of you now have a vested interest (Thank You!), but will resurrect an old blog of mine, titled “Organized Chaos,” (that title is as appropriate now as it ever was!) and will post there about the absurdities and discoveries I make about me new life.

Namaste

It’s only a ride!

roller coaster 3

I never liked Roller Coasters as a kid. Didn’t like the slow, labored sound of the click, click, click as the cart crawled up, up, up… I knew that strained, rhythmic clatter would soon be replaced by that terrifying and inevitable, vertical fall! And if that didn’t make me pee your pants, there were those nasty, hard corners that unexpectedly turned up, throwing my body up against the wall of the metal, open topped casket, forcing my left (or right) elbow deep into my rib cage, spleen and kidney.

Learning, early on, I didn’t like walking around the fair ground in wet underpants, I’d stand on the ground, usually alone, looking up at this huge wooden structure and wait… I’d listen to the click, click click and then to the bloodcurdling screams (and laughter) of my friends who dared to ride this death trap!

No, Roller Coasters were not my thing. I was more of a Tilt-a-Whirl kind of gal. A semi-enclosed metal cart, that you got locked into, and it spun around, on wheels, on a metal roller.  All the time the very base that the roller was affixed to, was also spinning around. {Ooo… dizzy thinking about it!}

Hmm? Had I known the rest of my life would end up being the epitome of an (emotional) roller coaster, I may have tried a little harder to actually enjoy the coaster of death. Maybe, I would have have gotten used to the feelings of intense highs followed by the extreme lows and those corners that you never saw coming, but kicked the shit out of you anyway. Maybe I could have gotten used to peeing my pants and just continuing on…

Had I tried just a little bit harder (instead of being such a “wuss”) I might be a little better at this ride we call life.

Instead, I just struggle.

Guilt; Noun – feeling of having committed wrong or failed in an obligation:

got guilt

The train trip from Dover to Brighton takes about 2 1/2 hours, so there’s a lot of time to just be by yourself, think and be introspective. (Deja vu)

I feel guilty about going back to Brighton a day earlier than planned, but an invitation to the Hat Festival, in Bridport (Dorset) was one I could not refuse.  I need a rest. I need a “Hat Festival,” whatever that is! I need to feel normal and do things that regular people do. It’s been a very long and intense 8 weeks. I have traveled from Brighton to London to Dover to Brighton so many times I’ve lost count and my head is spinning.  I need to exhale, let my hair down (so to speak!)

Brief Interval:  During the writing of this blog entry , I was temporarily distracted by about 70 young Italian students boarding the train, three of which sat with me at my table. I spent 45 minutes trying to converse with these kids (aged 13-16) and their teachers.  They were traveling through the UK, from Venice, Italy. What a riot!  I do not speak Italian very well, and they did not speak English very well, but yet somehow we were able to talk!  We really talked.  After answering a lot of question about who I am, where I’m from and what I do (yes, really hard to explain!!!!)  a cute young boy of 16 asked me if my 31 year old daughter was married!  We all laughed!  Like he was interested…. They got off at Saint Leonard’s Warrior Station (God knows why), but what fun I had.  I was totally lost in the enjoyment of talking with a bunch of kids…  imagine that! 

Ok, so back to my feeling guilty… {It always comes back to guilt doesn’t it?} This weekend we’ll go to Bridport;  a small, beautiful, funky town in Dorset.  Nick has a friend (from when he was like 10 years old! ) named Jon, who is a Veterinarian, and he lives there.

I love going to Dorset. I want to live in Dorset… I love visiting Jon and his dog Chrissy, so why do I feel guilty about going and doing something that I know will be fun and enjoyable? Why do I feel that I’m either supposed to be with Arielle, or be sitting in my Flat waiting to be with Arielle? Why is there guilt about the possibility of my having fun.

Guilt… a very strange concept.

“No one blames her.”

“That never matters,” said Alec. “Not when you blame yourself.”

Cassandra Clare, City of Lost Souls

A deal with God

image

The train trip from Brighton to Dover takes about 2 1/2 hours, so there’s a lot of time to just be by yourself, think and be introspective.

I inevitably started thinking about Arielle and the fact that she has cancer and how unfair that is since she is so young and has a whole life of experiences ahead of her.  This led to my thinking about how old I am (I believe the saying is “as old as dirt”) and how much I’ve experienced in my life. This led to my negotiating (making a deal if you will) with God.

Yes, you know what’s coming….  “Let Arielle get through this and be cancer free for another 40-50 years and take me now, instead”

This thought process brought about the most remarkable epiphany; I have had a fucking AMAZING life! No, seriously, I have had the most fantastic, phenomenal life a person could have!  I mean a regular person, not a Paris Hilton kind of person. Here are some of the highlights!

  • I was born in the 1950’s, which means I grew up in the 60’s, which was the totally best time to grow up in, ever!
  • My parents loved each other and worked hard to give their kids the best they could.
  •  Having the absolute greatest older brothers in the universe was like winning the lottery!
  • Growing up on the wrong side of the tracks, helped me to learn quickly about life, people, friendship and diversity.
  • I almost went to Woodstock, but Mom said “No.”
  • When I was 14, a young hippie couple moved in next door. They taught me about acceptance, love,  music, politics, pot and loving myself.
  • I’ve was an anti war activist at a young age. Marched in rallies and burned my bra during the women’s lib movement.
  • My first job was in a radical bookstore and my name is most likely on an FBI list from 1971! (Not because I did anything wrong, but just because I worked there)
  • I’ve been married three times and I’ve been loved by some genuinely extraordinary men, as well as a few SOBs
  • The man I’m married to now has loved me for a really long time!! God only knows why.
  • I’ve experienced natural childbirth… twice!
  • I have two beautiful daughters, who have made me very proud and two grandsons who I adore!
  • I’ve been rich, poor and everything in between.
  • I didn’t die of a drug overdose like some of my best friends did.
  • I’ve been fortunate enough to have traveled to Italy, France, Germany, Switzerland, Spain, the UK and lots of places in the US.
  • I’ve celebrated New Years Eve in Paris and slept in a Bedouin camp, under the stars in a desert in Jordan
  • I have eaten some of the best food ever made and made myself sick drinking too many Martinis!
  • I’ve met some of the nicest, kindest, most loving, caring people on earth, who I am proud to say are friends and some became family.
  • I’ve had to do things nobody should ever have to do, but glad I did because I am a better stronger person because of it.

All in all, it has been one hell of a journey and if it did end right now, if God accepts this deal, I would have absolutely not one single regret! I have lived my life on my terms, learned from my mistakes and most importantly I have loved and I have been loved.

So if by chance I suddenly turn up dead, as in I’m hit by a meteor, slip through the infamous”gap,” or perhaps fall off one if those cliffs Nick is always taking me to… It’s okay. I’m good with it… It’s all part of a deal, that I got the better part of!

You just wait and see…

white ckiffs

After being home just over 48 hours, tomorrow will find me once again on a train (two trains actually), headed for Dover.

Last week in London. This week in Dover. Weekend in Brighton. My life is an overwhelming whirlwind of movement and activity, and I find it difficult to get my bearings.

One day runs into the next and although my surroundings change drastically, nothing else does. Arielle still has cancer. Our lives are still upside down.

I wake up exhausted and walk through the day in a zombie-like state. My feet melt into the hot gummy surface that seems to slow my every movement. My vision is blurred by a haze that never burns off,  …one day just runs into the next.

Tomorrow I’ll open my eyes and search the room for something, anything familiar… because that’s how I’ll know where I am.

The White Cliffs of Dover 

There’ll be bluebirds over
The white cliffs of Dover
Tomorrow
Just you wait and see

There’ll be love and laughter
And peace ever after
Tomorrow
When the world is free

The shepherd will tend his sheep
The valley will bloom again
And Jimmy will go to sleep
In his own little room again

There’ll be bluebirds over
The white cliffs of Dover
Tomorrow
Just you wait and see

Just you wait and see
When the world is free
Just you wait and see
When the world is free

When the world is free
Come on and wait and see
When the world is free
You gotta wait and see

No rest for the weary

sleeping-291x300

It’s hard trying to get rest in a hospital!  

Arielle is more and more exhausted (not to mention wicked cranky) as the days go by.  She seems unable to get any real sleep at all!  It could have to do with the chemo, but also the fact that hospitals are not good places for peace and quiet.

This week has been particularly bad.

We have had the normal 4 hourly vitals check, which is pretty annoying, because just as she’s falling off to sleep, a perky young night nurse, who’s perhaps been drinking way too much coffee, wakes her up to take her temperature and check her blood pressure.  Hello Nurse!  

And then there’s being in a room with 5 other women… well that’s fun, right?  Yes and they are sharing a bathroom (located right there in the ward!) Everyone gets up at different times during the night to use the toilet. Lights go on, toilets get flushed, hands get washed… it’s a whole palava!       

Round 3 has also presented an “interesting” array of roommates!  (I guess she was really lucky with Rounds 1 and 2 as  they were all young, similar types of cancer and they got on really well.)  

The young lady in the bed right next to Arielle keeps her light on all night!  Yes, even though she’s fast asleep, there is a beacon of light emanating from the other side of the blue curtain! She also talks REALLY loudly when she is on the phone (but is barley audible when she speaks to the nurses?)  No seriously… I’m a LOUD talker and she is much louder than me!!!!  To add fuel to the fire, she has an annoying text message alert that sounds like someone whistling (What is up with that freaking sound byte?) that goes off about every 20-30 seconds…. and Arielle is more than a bit concerned that she hasn’t showered or washed since she was admitted on Tuesday. Hmmm? Perhaps a bit alarming. 

An older woman was admitted yesterday… bless her, she must have throat cancer. She is constantly coughing/choking up “stuff,” and has to use an aspirator every 30 minutes or so. The sound is… well, it’s horrific! I totally understand that she cannot help it and I do feel bad for her when she goes into these coughing fits, because it sounds like she’s going to choke to death… but for her privacy and the comfort of the 5 other woman, they might have put her in a private room. (of which there are many which are not occupied!) …but I guess the NHS rules dictate who, goes where.  

The woman in the corner diagonal to Arielle keeps her “blue curtain of privacy” closed almost 24/7. She is quiet enough, but when she’s watching TV/movies on her iPad, it sounds like she watching PORN! Really! Good on her, I guess… I don’t know where she gets the energy? 

And then there’s Milly (not her real name).  She is friendly and really quiet. Wouldn’t say “boo to a goose.” … she hasn’t had any visitors in 3 days and that makes sad.

However, I digress…  The point is, there’s not a lot of sleeping going on in this place!  

Thankfully, in less than 24 hours (and only one more chemo treatment) Arielle will get on that Dover bound train and she’ll get to go home! To her bed, her things, her cat… and she will sleep.  Well, at least until Monday morning, when she gets back on a train and goes back to London for her (hopefully) next to last chemo treatment. 

Mothers, brothers, daughters and friends

 

image

Even the word itself has an evil, pervasive sound to it; C A N C E R.  As it rolls off the tongue it conjures up images of sick people, sadness and loss. Cancer, it’s probably one of our worst fears, right? (Worse even than spiders and the fear of drowning!)

For some reason life has given me more than my fair share of experiences with cancer.  It started when I was about 12 and was told my grandmother had a brain tumour that was inoperable. I had no idea what cancer was at the time (I was to busy dodging dinosaurs!) I just knew my Grandma was sick and my Mom was going to be with her, and then she was gone.

I’ve already mentioned my Mom, my brother and Carl… There was also an uncle, an aunt, an ex-boyfriend, the mother of a friend of mine… and the list goes on.

However, I’ve noticed, that behind the cancer, there are always these wonderful stories.  Stories about the people who have been diagnosed and about their families and friends. Stories about how in spite of the dreaded diagnosis, these people go on to live and love and teach the rest of us so very much about living and loving!

I have a good friend in the US, who I’ve known and loved for 16 years. She called me a little over 3 years ago and I remember her first words like the call took place yesterday;  “Hi, Meliss… I wanted to talk to you because, I know you know about this… I have just been diagnosed with pancreatic cancer.”  My heart stopped. Fuck yes, I know about pancreatic cancer… It ate my brother alive in about 9 months!

But this, my good friend’s story, is playing out very differently! She’s is still with us! After over 3 years and close to 100 chemo treatments! In fact she emailed me last night to say she was praying for Arielle and to ask how I was!!! Imagine that, she’s worried about me!

I am in awe of this woman. She has just flatly refused to buy into the illness.  She faces each day with faith, love, optimism and hope. She sets goals. Tries new things. Has become a vegetarian. She travels as often as she can. Still helps and is very involved with her kids and their lives and has had an anniversary party (where everyone wears pancreatic purple) for the past two years, to celebrate another year of life since her diagnosis.

Her story is amazing… She’s amazing! Regardless of whether she lives another year or another 20 years, the way she has lived the past three years is inspirational to say the least.  She was totally cool before her diagnosis, but it shaped her into an even stronger, more determined, powerful individual who inspires me and gives me hope.

There is always a story behind the diagnosis. Arielle’s story is just one in a million. It is my entire world right now and pretty much all I can think about, but it’s just one story. One in a million. 

 

Round 3 it is!

round 3

With last week’s news that the cancerous portion of the large mass appears to be getting smaller and today’s news that the cancer markers are down from 67,000 to 54,000, the decision has been made to move forward with Round 3 of the chemo treatments. (5-1-1, a total of 7 more treatments) 

I know this is good news, but I’m conflicted with the decision.

Part of me is absolutely thrilled that the cancer appears to be shrinking and the markers are finally going down. This is fabulous, it is!  However, the prospect of Arielle having to endure another 3 weeks of chemo is not easy to think about.  And, yes… from a totally selfish perspective, the thought of my having to live in this nightmare for 3 more weeks, makes me nauseous.  

Surgery sounded like a pretty good option… go in NOW, get it OUT!  Okay, I may have oversimplified that option a wee bit, but it did give me comfort thinking that “IT” would be out of her, sooner rather than later. (Was it Alien, where the yucky alien thing jumped out of Sigourney Weaver, stomach?) Yeah, that’s what I had hoped would happen sooner!  …and it just feels like three more weeks is an eternity! …but, I’m just winging now so I’ll stop! 

Three more weeks brings us to the middle of September, a week or so to round up a surgeon and organize the surgery surgery, brings us to maybe somewhere around the week of the 21st.  

Hmmm, maybe my Mom’s birthday would be a “good omen” kind of day. September 24th. We’ll have to wait and see.  

Okay, {inhale} let’s do this! {exhale}