Final Blog Post

After 4 years of giving this blog writing a whirl, I've decided to wrap it up this year. My intention of this blog was to pay tribute to my father, as well as to communicate with friends and family in a unique way by writing these posts.  Going into this, I knew that I wasn't much of a writer, but I did want to connect in this different way of expression.  I'm moving on, and found that I prefer connecting over the phone or in person, where I can see the person, hear the person, or hug the person.  I prefer more intimate connections than what a blog can provide for me;  and both take time.  I prefer to spend my personal time in ways that I find more life-enhancing.

My new website will be geared solely toward my career, with a blog geared toward valuable information that I will share with my patients and community.

As far as my tribute to both of my parents, I hope I have done them justice, and may they both rest in peace.

I love you mom and dad.  I still miss you.

In Honour of Mom

Panayiota (Jan. 26, 1931 - Mar. 31, 1999) Her long form English name was Patricia.  Canadians called her Pat;  it was Mrs. Savich, to the younger ones that loved her.  Her long form Greek name was Panayiota, and Pota for short.

She was an enthusiastic ball of affection, who took no guff from anyone, and had arms wide enough for everyone.  She was devoted, passionate, feisty and above all, loving.  She rode a roller coaster of emotional highs and lows most of her life, always (and unnecessarily), apologizing for this sweet and precious aspect of her humanity.

She was simply, beautiful.  On her tomb stone it reads, "Compassionate, Beautiful, Indomitable Soul".

She would have been 84 this year had she miraculously survived ALS.  In 2 months, it will be the 16th anniversary of her death.  And like every year, donating to ALS groups and to pALS is what I do to honour her memory.  I've blogged about this disease extensively.

This year, I wanted to do something a bit different.  I wanted to share with you, my family and friends, (and perhaps strangers that wandered on to this blog), songs that I had written almost 2 decades ago while mom was dying.

Grief brings out the most creative impulses.  Actually, writing these songs was therapy for me at that time.  Music heals in profound ways, and writing these songs was a way I desperately tried to come to terms with her dying process.  At that time, I was losing the most incredible, loving and sweetest woman I had ever known.

I wrote over 30 songs, 3 of which were recorded.  It wasn't done professionally or anything.  After all, it was me playing the synthesizer/piano;  definitely very amateurish.  The recordings are kind of scratchy.  However, I was very, very lucky to get Gail Jenne, an exquisite Bulkley Valley songstress, to sing these songs.  Her daughter Taisa provided some of the harmonies.  I am indebted to them.  Thank you Gail and Taisa.

1.  Questions

This is a song I wrote, questioning the topic of death.  When was I suppose to hold on?  When was I suppose to let go?

Here are the words:  Questions

2.  An Angel Sat Down On My Bed

This is a song I wrote to comfort myself.  I wanted to believe that while mom journeyed toward death, she would find great comfort.

Here are the words:  An Angel Sat Down On My Bed

3.  Goodbye

This is a song I wrote when I knew that mom and I would have to part ways soon.

Here are the words:  Goodbye

I don't know how it works in the afterlife or if there even is one.  Some people claim that they know.  I don't.  However, I do know that our Spirit is eternal and I know that right in this present moment, mom lives in my heart, and that too, is eternal.

I love you.

EDITED TO ADD (Jan. 31/15):

Thank you so much for your responses to this blog, whether to me personally, or directly on this blog.  I'm blown away by your responses.  Much, much gratitude.

Paul Dwyer is a musician extraordinaire, and he finished writing a song after his friend died.  It is called "What a Day".

Take a listen.  I can actually feel my heart opening wider and wider and wider as more and more harmonies enter the song.  Beautiful!  Thanks Paul.  (You can click on the link above to hear it, or down below, where it's easier to see it).

Peter Savich is my brother, and he wrote a most moving tribute to mom 4 days after she died.  It is called, In Loving Memory of a Singular Woman.  And as I read it now again, after so long, I am filled with amazement at his raw honesty during a very challenging time in his life.  I am also filled with gratitude for his gift to his "church", and wanting to memorialize mom through gifting to the most important aspects of his life:  family and friends.  Thanks Pete.

EDITED TO ADD (Feb. 1/15)

Thanks also goes to Richard Jenne who recorded these 3 songs and compiled the instrumentation and vocals.

Do We Benefit From the Death of Our Parents?

DSCN0915This is not a blog about financial inheritance. This is a blog in response to my brother's piece entitled, “When Our Parent's Kick The Bucket”. He writes about the emotional maturity, wisdom, grace and “enlightenment” we can obtain if our parents died early enough at a time in our lives that we could potentially benefit from their demise.

The first time I read his blog, I cried. I cried because anytime someone talks about how incredible our parents were, I'm moved in ways beyond articulation. As well, I liked the idea that I could somehow personally benefit from an experience of grief, like fertilizer for an anticipated bloom; the possible notion that my grief was for some better purpose.

I told him I would comment on his blog after I had come back from a visit with mom and dad out east.

DSCN0918At the Woodland cemetery in Kitchener, Ontario, the tombstone had been overgrown with thorny rose bush stems after an Ontario winter, waiting until warmer weather for my sister to prune these lovely plants in order to reveal its hidden inscriptions:

Душан 14 - 9 - 1926 9 - 12 - 2010 Cкро̏ман (meaning humble, modest, unassuming)

Παναγιωτα 26 - 1 - 1931 31 - 3 - 1999 Beautiful, Compassionate, Indomitable Soul

I stood there looking at their tombstone in the cool morning sunlight, and wondered if I had actually benefited from their deaths in a maturing-kind of way; that their deaths had somehow transformed my life with grace and wisdom.


Staring at the tombstone in front of me, I asked my parents, as I've asked myself many times before (as far back as I can remember), “What's it all about anyway?”

I cried for five minutes, and then I reflected on the question for twenty minutes after that.

There exists no one truth to the answer for that question, except through the unique eyes and perceptions of the one who is looking and asking at any particular moment.

For me, life is about the ongoing cycles and continuing movement between heartbreak and gratitude. When I use the word heartbreak, I mean it to comprise all types of intensities from miniscule fleeting disappointment, to prolonged heart wrenching loss and everything in between. At the core of heartbreak lies the notion of survival and the act of holding on. When I use the word gratitude, I mean it to comprise all types of intensities, from quiet peaceful contentment, to unbridled joyous love and everything in between. At the core of gratitude lies the notion of surrender and the act of letting go.

Heartbreak then gratitude, then heartbreak then gratitude once again, and the cycle continues until our last train stop home. Loss then gain, then loss then gain once again, and the cycle continues until our heart stops beating, leaving those behind to wonder about the meaning of our physical loss in their own lives. We enter this world holding on to life, then go through the cycles of letting go and holding on, over and over and over again, until we completely let go into our last breath.

To each unique individual on the planet, the ultimate purpose of these cycles may be about connection, or about love, or about acceptance, or about trust, or about learning. For others, these cycles have no ultimate purpose except to have experienced the experience. One size does not fit all.

We can allow unhindered movement in going from one experience to the next, through tears and sighs that can be the bridge between heartbreak and gratitude, between holding on and letting go, that can ease the transition along the way. Tears and sighs are like rain showers and wind gusts, clearing the path and making way for the next experience to follow. Without the rain and wind, we become stiff. My brother's theory of aging is as follows: “it amounts to stiffening – stiffening of our arteries, our joints, our hearts, our minds, etc.” Sighs are the gusts of comfort, and tears are the lubricant to our stiffening.

At every stage of life we have the opportunity to accept the endless flow of these vacillating states. We can do this while our parents are alive or when they die. Our parents' dying need not be a motivating force for change or for growth at any age.

This past weekend, my husband and I flew across the country to see his elderly mother and father for their 78th and 80th birthdays respectively. They were more frail, both physically and mentally than we had seen them in years past. My husband spent his short time with them, laughing at memories gone by, hugging them with gratitude, and crying while sharing with them, their losses and struggles as they both experienced the challenges of advancing age and illness. Rain had cleared the path once again.

Throughout their lives, both my mom and dad would say this: “Forget about it, it's not important”. It was their way of helping each other and helping their children remember to transition from holding on to letting go; from heartbreak to gratitude; from perceived loss to perceived gain; knowing that these cycles are ongoing until we breathe our last breath. This is the way I articulate this concept: “Life is too short to withhold an open mind and an open heart.”

So do we benefit from the death of our parents? Yes, for some, like my brother, whose humanity exponentiated after my mother's death. No, for others like me, who plod along through life, hopping on and off that train before the last stop called death, in a constant flux between holding on and letting go, and trying to embrace all of it; both the heartbreaks and the gratitudes.

And in so doing, my losses and heartbreaks become more deeply bittersweet, and my gains and gratitudes become more richly expansive.

Happy Birthday Dad

Today would have been my dad's 86th birthday if he had survived his prostate cancer.  As far as deaths go, his was a beautiful one. I was hiking with my friend today, and we talked about those of us who continued to have strong feelings regarding missing our elderly parents even after they had passed on.  She hypothesized that those of us who did so, were probably lucky enough to have had childhoods where the children were deeply cared for and loved unconditionally.

No childhood is a perfect one since all parents make mistakes, and parenting for the majority of people is a steep learning curve; at least during some point in the child rearing process.

Like everyone else, my childhood was not perfect, but I did feel deeply cared for and loved in a home that exuded these qualities.

And as I sit here looking at a photo of dad and I, taken so very long ago, I look past the completely zero fashion sense that the two of us shared.  (Thank goodness for the fashionistas of this world like Hilary!)

I look at that photo and I wonder what it is that I miss about dad not being here anymore.

One word.  It was the word written on his tomb stone in syrillic:  CKPOMAH

It's English translation?

"humble, modest, diffident, unpretentious, frugal, douce, retiring, self-effacing, unassuming, unostentatious, unpretending"

Honest Humility.  Without this, I think it is almost impossible to have tolerance and acceptance for others.  Without this, I think it is almost impossible to say, 'hey, I was wrong, I'm sorry'.  Without this, forgiveness has no meaning and arrogance takes up permanent residence.  Without this, barriers of pride do not give way to healing, and bold-faced lies go unchallenged.

I was only a mediocre student of these Life lessons.  Dad on the other hand, was a grand master champion.

Happy Birthday dad.  I miss you.

A Singular Woman

Dreams are funny things.

This particular blog is clearly for my own posterity.

It's not too surprising that I would have dreamt about my mom last night after having blogged herehere and here regarding the horrible disease that ended her life.

I'm sure a Jungian dream analyst would have a field day with the one I had last night.  Personally, I believe that dreams are a way that the body uses to help diffuse internal stress.  I haven't been particularly stressed as of late, but I have been thinking a lot about mom.

Panagiota Koumoutsakou 1931 - 1999.

She was a singular woman.  Five days after her death, my brother wrote a beautiful and moving article entitled, "In Loving Memory of a Singular Woman".  In the piece, he describes his instantaneous catapult at 36 years of age, from boy to man as he watched mom being lowered into the ground.

Mom was the most affectionate woman on the planet.  You're probably thinking, 'sure she was.  Everyone says that about their own nurturing mother'.  Maybe, but I still hold strongly to that belief.  It wasn't that she was just affectionate with her own family and friends, she would also be that way with people she had just met if she was deeply moved by them.  And she was easily and deeply moved.  However, she wasn't the type of hugger who hugged everyone.  No way.  She was authentic and extremely discriminative as well.  When she hugged a person, it was sincere, genuine and full of the most imaginable love possible, whether she was hugging me or someone she had just met that day.  There was nothing phony about mom.

Mom was also a defender of the underdog.  Considering she had a disease that I consider to be the underdog of underdog diseases, when it came to others, she was solidly in the corners of underdogs, often making enormous sacrifices in order that they succeed.

She was semi-comatose during the last 2 weeks of her life.  I gave her 24/7 basic care during those 2 weeks.  My heart ripped in two when I knew I could no longer stay and care for her because of the family and work responsibilities I had on the other side of the country at that time.

The plane ride back home was gut wrenching.  The consolation factor was that my brother Peter had just flown in from California to help out as I left.

The day after my plane had landed back home, the phone rang.

"Mom's breathing is really weird", Peter told me.

"That's the beginning of the end Pete.  Mom will likely be gone in a few hours.  Could you put the phone to her ear for me?"

Peter placed the phone to mom's ear.

"Mom, I love you so much.  I'm so lucky that you were my mom.  I couldn't have had a better mother.  Someday we'll all get together and have a big party".

When I spoke into the phone, I knew I was speaking to someone who was completely comatose and possibly brain dead.

Peter returned to the phone.  "What did you say to her?" he asked me.


"Tears started running down her cheeks after whatever it is that you said to her", he replied.

Interesting.  I had assumed she was brain dead.  Perhaps she did hear me.

Two hours later mom died.

Last night, thirteen years later, I had the most crystal clear dream of mom I had ever had of her.

In the dream, I was simultaneously a teenager and my present age.  Friends from my teenage years and I arrived at this palatial building.  It was a Greek Orthodox Church (my mother's faith), and it was the most enormous and elegantly gold decorated church I had ever seen.  My friends and I were checking out the place as we walked down the isles and then went upstairs into a balcony-like sitting area.  I started walking down the stairs on my own and I saw a family friend and her daughter.  They were talking to someone who was not yet in my field of vision.  As I proceeded to go over and greet the family friend, I saw who she was talking to.  It was my mom!

This is where the dream became crystal clear.  Mom was around 50 (approximately my age now).  She looked fantastic!  She was dressed in a blue blazer and skirt and her grey hair was permed with curls.  I was overjoyed.  It all felt so real.

I spoke to her, "Are you still alive?  I can't believe you're still alive!  Is this just a dream, or is this really real?!"  I was in a state of bliss.

Mom just smiled at me.  She didn't speak.  Not because of the loss of speech that befell her due to her disease of ALS over a decade before, but she didn't speak because she was just smiling from ear to ear.  Her smiling silence indicated to me that I wasn't suppose to know or understand the mystery of my queries.

I proceeded to hug her and received back from her, that all-too-familiar loving hug.  This time her hug was also drenched in peace.  The bliss exponentiated.

Instead of lingering in the moment of that bliss, I immediately woke myself up while in the dream to see if I was really dreaming or if my experience was actually real.

Life is about choices.  The glass-half-empty part of me woke up to disappointment and an intense feeling of longing and missing.  The glass-half-full part of me felt grateful for this dream and saw it as a gift about an incredible, singular woman.

Rest in peace mom.

A Beautiful Death

Dad was clear that he wanted to die at home.  He wanted to spend the remaining weeks and days of his life in the home he had known for 50 years. At the beginning of November 2010, we found out that dad had advanced metastatic prostate cancer.  My sister Julie, who had always been there for dad, both in proximity to where he lived and as an unending supportive force for him for decades, made arrangements for her older son to move into dad's home in order to help him out.

Dad's family doctor was a lovely and helpful man who initiated diagnostic radiological testing, along with the much needed narcotic prescriptions for dad's initial bouts of excruciating and unbearable pain.

Every challenging disease contains within it, its own suffering, limitations, and heartbreak.  Comparative suffering between diseases seems to be an odd and pointless mental exercise, yet I clearly recall the thoughts I had more than 3 decades ago while I was in nursing school.  I was in our lecture hall at St. Mary's hospital where we were  learning about disease processes, and one particular afternoon upon learning about ALS and PBP I thought to myself:  "this has got to be the worst disease on the planet".  Fifteen years later, my mom developed PBP.

During a profound clinical experience as a student nurse, I recall helping care for a patient with metastatic bone cancer, and I thought to myself:  "this has got to be the most painful disease on the planet".  Thirty years later, dad was experiencing this disease.  These were clear memories, and I found both coincidences to be a bit eerie to say the least.  It's not that I don't have other memories of disease experiences during my nursing studies.  I do.  I just don't recall any being as crystal clear and as gut-wrenching as those I studied, that would eventually and coincidentally become diseases that my parents would experience.  Weird.

Because dad chose to wait so long before a diagnosis could be established, he did not initially have the benefit of the services of an entire oncology and palliative care team in place to assist him with his progression toward death and relief of suffering.

He did, however, have three children who were on the same page when it came to respecting dad's choices regarding healthcare management, treatment or lack thereof, maximal assistance through the dying process, and any relief of suffering that was possible via any type of therapy.

All three of dad's children were there for the last 2 1/2 weeks of his life, making sure that his descent into death was as comfortable as possible.

When I arrived at dad's home from the other side of the country in the third week of November, it was very apparent that there was no way dad would be able to die at home without the knowledge, medications and treatments from competent oncology and palliative care personnel.  When I saw him, it was clear that dad needed more than Percocet and Hydrocodone for his pain management, he needed more than room air for his intermittent dyspnea, and he would eventually need aids like a wheelchair, commode, hospital bed and an emergency kit, if he were to die at home.

Two days after I arrived, dad had an appointment to see the oncologist.  "Huh?!?!"  Dad could barely walk to the bathroom, he had severe episodic bouts of dyspnea, indescribable fatigue, and excruciating pain, where lying semi-flat was the only position that provided him a temporary measure of relief.

"Dad has to go to the oncology clinic today?!?  I don't think so.  Dad's not going anywhere."  I was determined that there was going to be another way dad could get his needs met.  By phone, I spoke with the nurse in the oncology palliative department and told her of dad's situation.  She said that she couldn't do much about it because dad hadn't seen anyone in their department and they couldn't help him without seeing him first.  I told her that if we attempted to bring dad to the clinic, I hoped that she would be prepared in the event that dad would likely collapse and need a hospital bed to lay semi-flat on, resulting in an even more likely hospital admission.

She talked to the oncologist and told me that the doctor would make a house call later that day to meet dad and offer him assistance.

To this day, oncologist Dr. Sims of Cambridge, Ontario, and her drive out to see dad on that wintery day to make that all important compassionate house call, remains in my top 20 life experiences that stimulate profound gratitude in me.

My brother Peter and his friend Craig were sitting on the long couch, while Dr. Sims sat on the short couch.  Dad was lying semi-flat on his bed that my brother and I had brought into the living room from his bedroom the day before, in preparation to have more space in order to care for dad more easily.  I sat on the end of dad's bed.  Dr. Sims then proceeded to inquire about dad's medical history from me, and dad's present symptoms from him.  I made it clear to her that not only was dad's pain tolerance extremely high, but he was a man who was stoic beyond belief.  He wasn't a person to complain about his symptoms, and when he would start to complain of pain, he had already reached beyond maximum threshold.

We told her that dad wanted to die at home.  Dr. Sims knew what that meant.  Clearly, she was not only a compassionate oncologist, but an experienced one, and knew what dying with metastatic bone cancer entailed in terms of palliative care.

"You're sure you want to do this?"  Dr. Sims asked, looking directly at me.   I knew the question was meant for all three of us:  myself, Peter, who was sitting across from me, and Julie, who would have been there had she not been working her evening shift.

"Hospice care in Cambridge here is excellent", she added.

I had no doubt, that hospice was a Godsend to so many who were in dad's position.

"Yes, we're sure", I told her as I looked at my brother.  My eyes redirected back to her,  "Dad wants to be at home".

Dr. Sims then turned to my dad and said to him, "You must have done something right in your life".

Always the modest man, dad replied, "Oh, I don't know about that.  I'm very proud of all three of my kids".

During that meeting, Peter and I both affirmed out loud that dad did a lot of things right in his life.  A lot.

Dr. Sims then proceeded to order all of the things we needed:  Hydromorphone, Lorazepam, Fentanyl patches, Decadron, Lactulose, Bisacodyl, Rabeprazole, an emergency drug kit (complete with drugs, syringes and needles), respiratory services for oxygen, occupational services for aids like a wheelchair, hospital bed, air mattress, commode and hospital table, and nursing staff that would come in every few days for half an hour to assess that dad's needs were being met.

We were now on the road home, well-equipped with tools that would help see dad achieve as much freedom from suffering as was possible.

The implementation of comprehensive conventional palliative care was a major turning point in dad's care.  Thank you Dr. Sims!

Alternative and complementary therapies are thought to be bogus by anti-CAM MDs for any and all types of conditions, and yet these therapies are anything but bogus, and do provide relief and comfort for those who are dying.  They did for my dying father.

Julie was involved with prayer for dad, which included the assistance of her mentors from her church.  We played cassette tapes of beautiful Serbian music that dad always enjoyed listening to.  While Morphine and Decadron were complete winners as far as palliative drugs go for relieving pain, the Lorazepam did nothing for his moments of fear and anxiety, and the homeopathic remedy, Arsenicum Album was much more useful and effective.  Julie and I took turns gently massaging his painful muscles.

One therapy that I used on dad, engendered a peculiar facial expression from him.  I started doing therapeutic touch on him (a practice I do rarely and only on my family members).

"What are you doing?" he asked me with a crinkled face that had skepticism written all over it.

"It's called therapeutic touch, and it can help ease the pain in some people.  You're my first guinea pig".

He weakly laughed through the pain he was experiencing.  Whether it was the frequent dosing of morphine, the placebo effect, or something else, each time I would do therapeutic touch on dad, he would drift off into a peaceful sleep within the few minutes after I had begun.  I didn't care what was helping.  I was just grateful that something was.

There is no doubt in my mind today, that the combination of conventional and complementary therapies that dad received, created the most beautiful death experience I had ever witnessed in my life.

I had seen many, many people die.  In nursing homes, in emergency departments, in ICUs, on general medical floors.  Lots of people.  I remember sitting with an elderly woman who was a DNR (do not resuscitate) in ICU and I was the only one around.  She had no family.  I held her hand until her cardiac monitor flat-lined, and I thought, "Gee, how sad it must be for some people to die alone".

Dad had all of those who loved him, surrounding him during his final weeks.  He experienced maximal comfort, joy, love, laughter, peace and contentment.  It was both a time of the celebration of love, and the remembering of sweet sad sorrows of years gone by.  Everyone came to share with him, in a toast to his life;  new and old friends who were dear and loyal to him, friends of his children that had also come to love him, and the old friends back in the old country who he had forged bonds of tungsten with.

There were the daily visits with his 6 grandchildren who would surround his bed, loading heaps upon heaps of love onto him, but never being able to match that amount of love flowing back to them from their grandpa.  His 3 other grandchildren were not able to be by his side, so they sent their love to deda from California and British Columbia through the cyberspace waves of Skype.  He was even able to Skype with family members in Denmark and in Serbia.  Thank God for modern technology!

Everyone who had ever met dad, liked him, loved him, respected him, or all of the above.  His parents, his siblings, his wife, his children, the spouses of his children, his grandchildren, his old friends, his new friends, his co-workers, his neighbours, acquaintances, strangers.  Everyone.

Dad definitely did something right in his life.  A lot of things.

Gratitude.  Dad was overflowing with sincere thanks to everyone who came to visit him or care for him.  He took all of their hands in both of his own, shook them gently, and to each he would say, "Thanks, thanks a lot, thanks a lot for coming".  It didn't matter who they were.  The respiratory tech, the nurses, all of the visitors.  Everyone.  Even though the words of thanks were always the same, each utterance of gratitude from him was like I had never heard the words multiple times before, because each time he spoke them, it was with the deepest, most authentic, heartfelt sincerity I had ever heard.  Dad was a man who lived his entire life in gratitude, the difference in the last 2 1/2 weeks, was that the gratitude coming from him was ramped up to a phenomenal intensity.

Along with gratitude, there was so much humour and laughter in dad's small house while he was dying, one would think that there was a major party going on, and not the dying experience of an 84 year old man with mets to his bones and lungs.

Dad always had a good sense of humour, but during his last few weeks, as with his gratitude, his humour also ramped up.  I was either laughing at his jokes or helping him with basic care.  There really wasn't any time for sadness it seemed, during those last 2 1/2 weeks.

Dad was a very independent fellow and accepted the loss of his ability to care for himself with grace and humour.  When dad's appetite bottomed out to zip, and we asked him if he thought he could eat some breakfast, he jokingly replied,  "I'll have 6 eggs and 6 bacon".  When I asked dad to please ring the bell when he was finished on the toilet, and to please not walk out of the bathroom without my help in case he fell and broke his fragile bones, knowing that I was his relentless watchdog, he slyly said to me, "There's only one door.  How can I get out with you there?  Maybe I'll go out through the window".

Dad was constantly thirsty because of the meds he was on, and everyone took turns every 5 - 10 minutes or so, holding a bottle of water with a straw to his mouth so he could drink.  When he could no longer get out of bed, he needed assistance to use a urinal to void.  One time dad was intensely thirsty and at the same time needed to void, so with one hand I held a water bottle with a straw to his mouth, and with the other hand I positioned the urinal so he could void.  He looked at me with tired but mischievous eyes and said, "Are you sure you're giving me the right bottle to drink from?"

Through all of his pain and all of his loss of independence, he still thought of others before himself.  While on the phone, he shed tears for the plight and suffering of his  dear friend who was struggling with caring for her bedridden husband.  He shed tears for his old friends whose parents died tragically during WWII when recounting the stories of years gone by with them.

He never shed one tear for himself.  Not ever.  He was always thinking about how he could be of help to others even in the last 2 weeks of his life.  Julie was shoveling snow off of dad's driveway one day, and he said to me while now completely bedridden, "I wish I could go out and help her".  He was serious and he meant it.

"Dad, I think she is doing a good job on her own".

Dad was determined to live to December 1st.  Why?  So that his children could benefit the most from his pension inheritance and dying before then would mean for him, that his children would not benefit maximally.  Who thinks like this?  A man who places the needs of all those he loves before his own, even when he is dying.

Peter used his phone to videotape dad talking about the many aspects of his life, from the days back in the old country to his experiences in Canada.  Peter also videotaped dad's story about why dad wanted to make it to December 1st.  My brother did this for the sake of posterity and titled these 52 short clip video segments, "Conversations With Dad".

One of the most joyful moments I witnessed during dad's final days, was a visit from his old friend, Mr. Stevo Kangrga.  The plum brandy was flowing, noses and cheeks were flushed red, the Serbian Skype lines were open, and the laughter was contagious.  Thank you slivovitz!  Thank you Decadron!  Thank you God!

Toward the end, dad's feet became swollen like big water balloons.  He wasn't uncomfortable, he just didn't like the looks of them and asked me if we could do anything about this problem.

"I'm afraid not dad.  That's a sign that your kidneys are shutting down and that's part of the dying process".  He then gave me his all too familiar shrug of acceptance.

"Oh, okay".

Dad was coherent and conscious up until 24 hours before he died, which was at 2:30 p.m. on December 9, 2010.  Julie, her son Jordan, and I - each one of us held dad close as he exhaled his last breath.

I have been blessed twice over.  Firstly, to have had a dad like this and to have shared him with my siblings.  Secondly, to have had the privilege with others, of caring for him during his final weeks, where I was able to bare witness to peace, love and joy in their finest states.

His, was a beautiful death and he got his wish.  Dad died at home.

Prostate Cancer: One size . . .

In this post and this post, I detailed the strength and resilience that my dad possessed in his early life and in his later life. This particular story, is not only one of strength and resilience, but of concurrent quiet contentment and acceptance.

It was at my mom's funeral that dad first experienced uncontrolled atrial fibrillation at 112 beat/minute.  He didn't look good and he didn't feel well.  What could anyone expect of him after having lost his life partner of 41 years?  after having given her 24 hour care by himself for 3 1/2 years up until 2 weeks before she died?  His heart was frazzled.  

I wanted to take him to the hospital.  "I'll be okay", he said, as he proceeded to down 2 shots of plum brandy.  With a weak smile he finished his sentence, "This will help".  No amount of cajoling on my behalf would see he, my siblings and I depart for K-W hospital.

Months later, when an EKG revealed a heart rhythm of controlled atrial fibrillation, dad's MD placed him on Warfarin for stroke prevention.  Dad wasn't keen on taking the medication since he knew it was rat poison, but I encouraged him to take it because he was more keen on not having a stroke.  The thought of possible loss of independence from a stroke, as it is with most people, was a frightening prospect for him.  He tolerated the Warfarin very poorly, and at even the lowest of low dosages, he would have spontaneous nosebleeds and bleed profusely from minor cuts.  He tossed the Warfarin into the garbage bin.

I put him on aspirin, Nattokinase, omega-3 fish oil, and high doses of Allicin (found in garlic).  His CHADS2 score was only 1, and because he was receiving some form of anti-thrombotic therapy with the ASA and botanical medicines he was taking, I felt slightly better about stroke prevention in a person with non-valvular atrial fibrillation on no Warfarin.  This was in the days before Plavix, but studies now show that for cases like my dad, using aspirin is not much different than using Plavix and aspirin together for stroke prevention.

He didn't die of a stroke.  Another disease was waiting for him.

Dad didn't like going to doctors much.  This is not an unusual sentiment since more than a few people have this same aversion.  The reasons for this aversion are wide and varied.  Some people are afraid of the diagnosis they may receive, while others just don't like their physician and can't be bothered to find another one.  Some are averse to invasive procedures, while others feel a sense of indestructibility and see no need to make an appointment with their MD.

None of these reasons explained my dad's reluctance.  He liked and respected his doctor, he wasn't afraid of disease, and he fully accepted that his eventual death would come when it would come - no sooner and no later.  He just didn't see the need for people fussing over him, and he lived by the adage that so many people do:  "if it ain't broke don't fix it".

In 2005, he was tired of my pleading with him to see his MD for blood work and a physical exam, so he up and did it one day.  His blood work was all normal except for his PSA count, which was 6 ng/ml at that time.  Dad's MD took a wait and watch approach (as though my dad would allow him to do anything else!).  His PSA dropped to 5.5 ng/ml when the test was repeated 6 months later.

After that, dad had no interest in getting any more blood tests.  I cajoled again.  He stood his ground.  In the light of recent studies, I probably could have backed off of the cajoling, and I'm sure he would have appreciated that.  But back then I was unaware of that recent study or this one.  The years passed and I saw that dad had no more interest in seeing his physician, so I asked him if I could take some blood from him to test.  He didn't seem to mind that plan.

Again, all of his blood work was normal except for a rising PSA, which was now 8 ng/ml.  I sat down with dad and I said, "Dad, I think you likely have prostate cancer, but we can't know for sure unless you have a rectal exam and possible biopsy.  Would you be willing to see your doctor so he can arrange to further exam you and have this type of testing done?"

"No."  It was the most firm, sure and gentle 'no' I had ever heard from him.

"What if it's cancer?" I asked him.


Dad was very clear.  He was uninterested in discussing potential treatment of a likely diagnosis of prostate cancer with me or with anyone else.  He did not wish to hasten his life and he did not wish to prolong his life;  and he definitely did not wish to prolong his life if there was going to be a potential for uncomfortable side effects with treatment.

He was content.  Not fearful.  Not pushing or pulling.  Just accepting.

I was not as accepting as he was of his decision to not continue with further diagnostic testing, but I respected him enough to say to him, "If that's what you want dad".

I consoled myself by trying to convince myself that dad would probably hate androgen suppression therapy, never in a thousand years agree to a radical prostatectomy, and never in a million years agree to brachytherapy.  That didn't seem to work though.  Then I consoled myself by telling myself that prostate cancer was a slow growing cancer, and most older men have prostate cancer whether they know it or not, as seen in autopsies in 80% of men aged 70 and older.  Dad would likely die of something other than prostate cancer I reasoned.

I was wrong.

He was 84 years old, and five years had passed since his first elevated PSA test.  In June of 2010, during one of our weekly long distance cross country phone calls, he told me that his back was hurting and that he was limping a bit.  He said he probably lifted some heavy jugs of chlorine and pulled some back muscles.

That was the first time I had a vague sense that this was the beginning of the end.  You see, my dad essentially never complained about anything, least of all, matters pertaining to his own well-being.  Whenever he would call me to tell me about any symptoms he was experiencing, I knew it was serious.  He always made it seem like it was no big deal, but even a mild mention of any symptom meant that dad was suffering some serious ailment;  a gangrenous gallbladder, a dislocated shoulder, an abnormal heart rhythm.

"Dad, please go and see your doctor and get an X-ray and a CT scan".

"I'm okay", he said.  "Don't worry about me".

"I'm not worried dad, I just think it's best to know what we are dealing with".

He then changed the topic of the conversation and I continued to push.  He became a bit annoyed with me and tried again to reassure me that he was okay.

I knew that his body wasn't okay.  At least this time it would not be like the shocking experience that unfolded from my mom's diagnosis.

Metastatic bone cancer from advanced prostate cancer.  I smelled it 3000 km away.  My brain tried to desperately grasp on to other possible causes for his pain:  osteoarthritis, severe osteoporosis, spondylolisthesis, muscle strain, ANYTHING else.

When dad's pain was finally too unbearable, he agreed to have an X-ray, bone scan, CT scan and blood work.  A month before he was tested, he told me about a dream he had had.  In the dream was his mother who had passed away in 1981, his father who had passed away in 1990, and my mom who died in 1999.  In the dream, mom was telling him, "Danny, hurry up, what's taking you so long?"  In the same dream, he was trying out his coffin and said that it felt very comfortable.  He dreamt that he was at his own funeral, drinking a few shots of alcohol, and was pleased with himself that he didn't have to foot the bill because it was already taken care of.

Dad started to laugh as he told me his dream.  At that time, I didn't find it too amusing.  He was 84, ready to go, and I was selfish and not quite ready to see him leave.

"You're the best dad I could have ever asked for".  I didn't have to wait for the test results to come back to know that the writing was on the wall.  I had spoken those words many times before, but this was the first time I had said them with a mix of profound gratitude and excruciating sadness.

"Don't be sad.  I don't want anybody crying because of me", he replied.  At least being on the phone at that time, it was easier to hide the tears.

The tests came back.  Extensive mets to the spine, a large mass anterior to the spine, mets to the lungs, and a PSA of 13.  Even to this day, we can't say for sure that dad had prostate cancer because a biopsy was never done, but with all of the data that was available to the medical staff, that was the most likely diagnosis that was given.

For those who prefer treatment over no treatment, early detection and treatment of prostate cancer offers the best chance of recovery from this disease.  A new study suggesting that Vitamin E increases the risk of prostate cancer, needs to be examined more carefully.  The form of vitamin E that was used in this study was an alpha-tocopherol.  Naturopathic physicians have known for a long time that this form has the potential for causing problems when not properly balanced with beta, gamma and delta tocopherols, as seen in a mixed tocopherol preparation of Vitamin E.

I very rarely use Vitamin E in clinical practice, even in the mixed tocopherol form, so I can rest more easily knowing that I didn't hasten my dear dad's demise.

Prostate cancer.  One size does not fit all.  Not in desire for treatment, and not in response to therapy for those who choose it.  Each man will find his own way.

ALS: A Tough Road

In the spring of 1996, my sister phoned my office and asked me if I was sitting down.  Right then and there I knew it was going to be bad.  Really bad.

Mom had started developing symptoms in the late fall of 1995.  She was put through a battery of tests, saw a neurologist, and all the while she was undergoing diagnostic testing, I was thinking:  she probably had a stroke or has a small brain tumor.  I thought, surely she has something that we would have tools in conventional medicine and alternative medicine to use in order to deal with whatever problem she had.

Nope.  Such was not the case.

I was sitting down in my chair and it so happened that a patient had cancelled during that time, so I was able to speak with my sister.

"Kathy, mom has ALS.  Progressive bulbar palsy".

I have been shocked only a handful of times in my life.  My mom's diagnosis still holds the #1 spot for shocking experiences.  In looking back, I see that it was a diagnosis that I did not want to see.  Sometimes shock happens when the bubble of extreme denial is met with the force of truth.  I couldn't function for an hour after that.  Thank goodness for patient cancellations.

ALS (amyotrophic lateral sclerosis) is a terminal progressive and paralyzing disease of the spinal cord, whereby a person gradually loses every bodily function including breathing.  The only functions retained are eye movement and cognition.  This disease is like a relentless army, marching on with a clear mission and stopping for no one, destroying all of the nervous input to the muscles in its path.

Progressive bulbar palsy (PBP) is the worst subset of the disease, since it starts in the brainstem and progresses to areas in the spinal cord.  The prognosis for this type is usually much poorer than for ALS.  Mom's neurologist said that she would have about a year and a half to live before she succumbed to the illness.

No one knows what causes this disease.  There are theories.  I certainly have my own with regards to mom.  I believe a disease like this is multifactorial (many causes) and one factor for mom, was that year after year she dusted her beautiful garden roses with a pesticide that was a potent neurotoxin for bugs.  I remember seeing her down on her hands and knees putting this stuff on her plants, her face close to the rose bushes, and probably inhaling the toxic stuff.  The proximity of the nasal passages and the brainstem makes me pause to wonder and question.  She wore no gloves and no mask while she tended these lovely plants.  I wish I had known more at that time about toxicity and its potential harmful consequences, but such is life, and she is now long gone.  But who knows?  They are only my guesses.  Perhaps correct, or perhaps way off the mark.

Life is weird.  Tragic situations at times seem to be the fertilizer for both the most comic situations and the most heartbreaking realities.  I remember dying laughing with mom and dad during situations that only a disease like ALS could be the stimulus for.  I also remember deeply crying in private, for the progressive losses mom continued to experience:  loss of speech, loss of eating, loss of movement.

At that time I knew there were no viable treatments for ALS.  There is still nothing 16 years later.  Back then, Ritulek was a drug that could possibly extend life for up to a few months.  I see that it's still kicking around, not doing too much except providing false hope for desperate people.  Mom did not opt for Ritulek because she reasoned, that if it would only prolong her life a few months, it would be prolonging the suffering and loss she was already experiencing.  No thanks, she reasoned.

For me, the search to help my mom had begun back in 1996.

I was searching for answers - any answers.  At that time, I had only found 2 cases of people who were cured of ALS, and as with any cure of a disease that contains within it, a death sentence, "misdiagnosis" was the cry from the skeptics.  The jury is still out on whether these 2 people were actually misdiagnosed.

The first woman was in her 30s and had a mouthful of dental amalgam fillings removed.  After that, her severely debilitated state started to reverse until she regained her health completely.  A few patients with MS (multiple sclerosis) have also experienced dramatic improvements with their disease after amalgam removal, however, in general, there is no data that shows that this procedure is helpful for neurological diseases for the large majority of patients with ALS or MS.  There were skeptics that said this woman was misdiagnosed and that she never had ALS to begin with.  Maybe.  I don't know.  I didn't see her neurologic assessment and diagnostic testing reports.

Mom had a mouthful of dental fillings as most of her teeth were held together with silver metal.  I didn't even suggest the possibility of dental filling removal to her.  What an arduous, daunting, expensive task that would have been, and for what?  The remote and unlikely possibility of a cure?  No.  That would have compounded the cruelty that the disease had already set in motion.

The second ALS cure I found was experienced by a nurse named Evy McDonald, who eventually became a Methodist minister after her complete recovery.  Acceptance of self, life and her disease process appears to have been the stimulus for her complete recovery.  I recently googled her name to see what had become of her.  She is still living her life without ALS, 31 years after her first diagnosis.  Pretty impressive.  However, there are those that believe she had PPS (post polio syndrome), and that her diagnosis of ALS was a misdiagnosis since theses two diseases can present similarly.  Maybe.  Her neurologists were pretty certain of their diagnosis though.

Then there is another kind of impressive.  Steven Hawking has had this disease for 48 years, however, for the past many decades he has been almost completely paralyzed and uses a voice synthesizer to speak.  His limitations have not prevented him from authoring numerous books and researching his scientific theories.

It is rare for people with ALS to live beyond 5 - 10 years;  1 - 3 years for PBP.  If Evy's ALS diagnosis was correct, then she is the rarest of rare exceptions.

While miraculous, Evy's story is more than one of hope.  It's a story about life and what she chose to do with The Beast, as Tom French, a plastic surgeon, called his disease.  His story can be seen in the documentary movie Mind Games: A Love Story.  I watched the trailer and I cried for the full 4 minutes of its playing.  I understood the heartbreaking reality of the limitations that Tom and his family experienced, and I knew firsthand about the beauty and opportunities that this disease also makes room for, if we allow it.

In the book Tuesday's with Morrie, Mitch Albom writes down his conversations with Morrie Schwarz, a sociology professor dying of ALS.  While enduring The Beast, Morrie retains his humour, love, happiness, and expresses acceptance of his disease process.

A young girl named Haley Stevens developed this disease.  It is uncommon for a person this young to have this disease, but it does happen.  As a mother, to see your child have to endure The Beast, knowing what the outcome of that story will be while still living out that story - I can imagine few challenges that would be greater for any parent to experience.  Any loving parent in this situation would trade places with their child in a nanosecond if that were possible.

Like Evy McDonald, Tom French and Morrie Schwarz, the youngest victim of this disease, Haley Stevens, also continued living life with acceptance, and eventually graduated from high school before she died.

Let me come back to 1996 again, 8 months after the onset of my mom's symptoms.  I taught mom how to meditate and I also prescribed nutrient therapy to help support her immune system.  I knew that this would not retard the progress of the disease, much less stop it, but I hoped it would offer some comfort and a feeling of well-being while she deteriorated.  She did experience lots of energy from taking the nutrients and from meditating, but she couldn't utilize any of that energy to speak, swallow or move her left arm. She would write this disappointment down on paper when she could no longer speak and she still had upper limb movement.

I looked into learning how to administer intravenous chelation therapy and ozone therapy (major auto-hemotherapy) as a Hail Mary pass for my mom's plight.  I was pretty sure that neither would reverse Mom's disease process, but maybe it could slow it down?  Maybe better than the Ritulek?  These were the thoughts that floated in my head during that time.  Yes, I was desperate.  I had flown across the country 4 - 5 times for 2 - 3 week increments  over 1 1/2 years in order to administer chelation and ozone treatments to mom, with essentially no resultant improvement from the treatments (except for increased energy and minuscule disease progression).  She lived for 3 1/2 years from the onset of her symptoms, and I suppose that's 2 months better than what Ritulek would have provided.  Who knows?  There is no evidence (or even any case reports that I could find) where chelation therapy had affected the course of this disease one iota.  However, it gave mom hope at the time.  Not false hope, because I always told her that I didn't know if it would help her, but that we could try and see what happened.  She took comfort in the trying and took comfort in every treatment I had administered to her.  When I'm in a wishful-thinking kind of mood, I sometimes wonder if it was the chelation and ozone therapy that helped her retain her ability to walk and preserve movement of her one arm, right up until 3 weeks prior to her death.  Sometimes I wonder if it was the chelation/ozone therapy that enabled mom to walk a 3 hour hike with us up a beautiful steep mountain, 7 months before her death.  Then again, it just might have been the way PBP typically progresses.  I am not a neurologist to have witnessed thousands of people deteriorate from PBP, and even if it were unusual to retain that type of mobility close to demise, it doesn't prove anything.

Forgive my digression.

When I look at who the heroes in this world are, I see people like Evy, and Tom, his wife Jacqueline, Morrie, Haley, her mother, and my own mom and dad.  People who faced the insurmountable, and learned how to climb that mountain in new ways to teach us all how to embark on our own climb.

Four weeks before mom died, she flew from Ontario out to Seattle with my dad in order to visit my brother, where I too, met all three of them.  There, the four of us went to an NBA basketball game together and enjoyed each others company for one week.  My most memorable experience of that trip was when mom had her first jacuzzi experience ever.  My brother's bathroom was gorgeous, complete with a jacuzzi that could fit 3 people.  Because mom couldn't pull herself up or sit up straight without falling, I helped her into the jacuzzi and sat in the tub with her, holding her upright so that she would not fall and be submerged under the water.

We put some bubble bath in, and when the jets started spraying and the bubbles started forming, mom started to laugh.  She laughed and laughed.  She couldn't talk, she could barely move, and yet she could laugh.  Laughter is a contagious thing.  I started laughing, and when I think about that time even now, I feel tremendous gratitude for that experience of seeing my mom with such delight and such joy in an otherwise bleak situation.

PALS (people with ALS) are tough people;  tough, as in exceedingly strong and resilient.  Their caregivers match every ounce per ounce of that toughness found in those PALS.

My dad was such a man.

To say that mom was stubborn, would be an understatement (and I am well aware that I come by this trait honestly).  Dad cared for mom for the entire 3 1/2 years of her illness.  By himself.  No nurses.  No extra caregivers.  My sister lent a hand whenever she could, but that was not always possible for a stay-at-home mom (at that time) with 6 young children.  Dad was meticulous about blending mom's foods and nutrients, then measuring her gastrostomy tube feedings and administering them to her when she could no longer eat.  He helped her walk, and write, and taught her how to write in English since she only knew how to write in Greek, the latter being her first language.  He helped her learn how to use the talking keyboard when she could no longer speak or write.  At times mom became frustrated at not being able to be understood, whether she was trying to express herself through charades, writing, the talking keyboard, or just with quiet groans.  It was dad who had the patience of Job, who continually and lovingly was always there for her, trying to understand what it was that she was trying to express.

And in the last 3 weeks of her life, when mom wanted no nurses in the home to help out, it was dad who respected her choices and it was he who lifted her out of bed and put her on the commode for her bathroom needs.  He was 73 at that time, and he was lifting her full weight with no assistance since she could no longer lift herself.  He gave her 24 hour care, essentially by himself.  Dad was their rock through their collective storm.

It takes a great deal of love, perseverance and toughness to do what my dad did.

ALS is a tough road, and the people in these stories of immense challenge are also very, very tough.

ETA 21/3/12:  To help those with ALS, please sign this petition.

Some People Are Really Tough

Last night I watched the movie Defiance.  I was very moved by this true story, likely because it reminded me of the stories my dad used to tell me when I was a child, and the stories he repeated on his deathbed 2 weeks before he died.  I could not miss the similarities between the stories:  a group of people who hid from the Nazis during WWII; who traversed forest wilderness, miraculously surviving the outdoor elements; were tough enough to withstand starvation, extreme cold, fatigue and illness; and were forced to cope with members of their group who had died along their journey while trying to stay alive themselves.

Some people are really tough.  

This is my dad's story:

His name was Dusan Dane Savich, and he was born in Podum, Yugoslavia on September 14, 1926.  He was the second child born into his family and was named after his grandfather Dane Savich.  Being the oldest boy, it was common in those days to name the first child of each sex after the grandparents.  His oldest sister Mara was named after their grandmother.

It was the early spring of 1944 when there was still snow on the ground.  The atrocities of war hung thickly in the air, and another heavy current was about to descend on the small town of Podum, Yugoslavia.  This time it was to be upon the homes of dad's aunts and uncles.  They were living a few kilometers away from the home where dad grew up and this was a surprise attack that no one had seen coming.

Nazi-affiliated Croatian soldiers tortured my dad's aunts and uncles.  These monsters, with machetes in hand, cut off bits and pieces of body parts, by body parts, while his relatives were still alive, and until there were only pieces of them left.  His sister Mara and her grandmother were visiting Mara's young cousins on this day of almost unspeakable bloodshed.  Mara was able to escape, but only after having been brutally raped by the monsters, and only after having been forced to watch the massacre of her aunts and uncles.  Her grandmother Mika had hid with the other younger grandchildren in a shed until the monsters had left.  The living members of dad's family that remained were left to grieve and to bury the slaughtered pieces of their loved ones in a mass grave at the cemetery.

After the massacre, with the strong encouragement of his mother, dad left home with other boys around his age in order to avoid a similar fate that his relatives endured.  He was 17 at that time.   This group of boys met up with older boys that had previously left home for the purpose of fighting in the war.  For over one year, they lived in the mountains and bushes trying to stay alive and not be killed.  There were no tents, the cold ground was their mattress, and the lucky ones were those that had blankets.  Some died.  The ones that survived endured the winter of 1945 out in the open, braved the elements, and became bonded by their new definition of what being tough was all about.  They were prepared to survive anything that life would throw their way.  This band of young men walked on foot from what is now known as Croatia, up through Slovenia, and across the Soca river into Italy.  They crossed the Italian border in May of 1945.  The war was now over.

By sheer luck, this band of young men, who were aligned with freedom fighters called Chetniks, were met by the 8th British Army.  This particular British Army was not a communist leaning army, and thus sent these young men to an Italian refuge camp.  The commander of this 8th Army was none other than Harold MacMillan, who would eventually become prime minister of the UK in the late 1950s.  Dad never met him personally, but he definitely reaped the life-saving benefits of MacMillan's division because of their anti-communistic beliefs.

There were other freedom fighters however, that were met by a different British Army, and those young Chetniks were sent back to the communist country from where they fled.  Those freedom fighters were the unlucky ones and were shot on the spot by Communist Partisans upon their return home.  As fate would have it, dad's group were met by the British Army that would send them to the refuge camp instead of back to sure death from whence they came.

Give me freedom or give me death.  That was the motto of these young freedom fighters.  Dad had held a gun in his hand during this period of time.  However, he had never shot a gun in his life.  He had never harmed a single soul.  His heart was too gentle, even in the midst of a world war, and even in the midst of the massacre of his own family the year before.  This gentle man, even up until the days he was dying, resonated with the motto that was held dear by a group of young men who forged a bond of tungsten on the trek across the mountains of Slovenia during the winter of '45.  Freedom or Death.

In fact, that slogan "Freedom or Death" was written on the Chetnik flag that was draped over dad's coffin by the few remaining men that were still alive from those days during the trek through Slovenia.

The concept of freedom was important to dad, as were the concepts of kindness and gentleness.

And when I heard those WWII stories again in the last weeks of his life, it was no surprise to me how he could be both gentle and strong during 2 other intense battles that he waged in his life:  the unwavering support of my mom during her terminal illness, and his sense of dignity during his own illness and suffering.

Some people are really tough.