Amyloidosis

This story takes the form of diary entries entered periodically in order to capture the developments of Waldenstrom’s Macroglobulinemia and Amyloidosis.  This was not written as one continuous poem but as a series of entries, often several times a year. As a consequence the format of the verse may alter slightly with each entry. It is a long journey, as you can see and hopefully the road will have fewer potholes in the years ahead.

Last update: 6 May 2019

I am naturally optimistic and was inspired by a small verse that I came across many years ago:

An optimist 10 storeys fell
And at each window bar
He cried,
All right so far!

Amyloidosis News, published by the Leukaemia Foundation printed a summary of Bill’s story in January 2019. The URL is as follows:

https://www.leukaemia.org.au/wp-content/uploads/2019/01/AmyloidosisNews_Jan2019_web.pdf

Bill’s continuing Journey

I wonder what would have been, had years behind been changed,
Had my health been robust, and my days not rearranged.
Maybe we’d have traveled more, enjoyed some different places,
Met people, saw the ways they lived, whatever life encases.
Such things now I’ll never know, how ever long I ponder,
Five years ago I found a road, though not by choice, to wander,
Potholed and strewn with stones, and rather rough to travel,
When the health I used to know, all started to unravel!

Cardiologist, physician, oncologist and of course G.P.
Haematologist, urologist, neurologist were some I had to see.

2009
I was increasingly aware that something wasn’t right,
Often very tired, couldn’t understand my plight.
‘It’ was certainly impacting on my productivity,
I was a part-time researcher at the university.
So fatigued was I, that it wasn’t uncommon to find
Me with closed eyes, just… “Resting my mind!”
Specialists ultimately saw a correlation
With my perceived condition, and atrial fibrillation.

2010
Treatment for atrial fibrillation (AF) was followed for the year.
Extreme tiredness continued unabated, the why just wasn’t clear.
AF had become unpredictable, unsettling, intermittent
But symptoms presented were exceedingly persistent.
Medication was discontinued and a decision made,
For a physician to assess the symptoms I displayed.
Months later after several tests were done,
To improve my health, a new strategy was begun.

2011
I’d contracted two diseases, both considered rare
One I thought was fair enough, but two just wasn’t fair!
There was an underlying cancer, a name that’s not familiar
I found it hard to say, Waldenstrom’s Macroglobulinemia.
It’s a form of leukaemia, but there was more to tell
I had a secondary disease, – Amyloidosis Type L.
Diagnosed as severely ill, chemotherapy ahead,
Treatment was rather urgent, or I could well be dead!

That was a shock to the system, what thoroughfare was this?
My world was turning upside down! What had gone amiss?

My afflictions were identified, and could be called by name,
Survival became imperative; days could never be the same!
Eighteen months had passed, before the source was clear,
Nose bleeds and fatigue, were symptoms for a year
Atrial fibrillation was treated, but still I did regress.
Biopsies and tests of nerves; helped me to progress.
Peripheral neuropathy and nerve function was quite poor.
Such were the doctors’ findings; I found there was much more!

Kappa free light chains in the blood, showed protein in excess,
Twenty four hundred scored, when twenty would impress.
Major organs had been damaged, but worst of all for me,
The loss of function I now had, a forever thing would be!
My immune system was ailing, wounds took weeks to heal,
I was frightened of the future, wondered how I’d feel!
Wondered what the treatment held; how it would change my life,
And most of all what impact, it would have upon my wife.

Five hours in the chemo chair became an expectation,
Seven cycles were in store, each three weeks in duration.
There were multiple effects; food had lost its taste,
Balance became unsteady, mouth allergic to toothpaste
Sleeplessness caused by steroids, fatigue became the norm,
Spent hours upon the settee, to help weather the storm.
Found life’s perspective hard to keep, the journey even longer.
To cope with so much stress, meditation kept me stronger.

The effect on Joy was rather tough, her life on hold for me,
As chauffeur, carer and a wife, Joy would share my destiny.

2012
Though the road ahead was potholed, I knew I had to cope!
The light chains were coming down, which was a cause for hope,
Should stronger chemotherapy be unlikely to succeed,
My stem cells would be collected, to provide for further need.
The collection was successful, a cause for jubilation.
The cells were stored in ice, for future restoration.
I did however lose my hair, an outcome of the process.
Energy had to be restored; it was time to convalesce.

Can’t use illness to excuse; must keep all that I appreciate,
Continue doing what I can, endeavouring not to deviate!

Bill March2012.jpg
Premiership player

Another challenge reared its head and took my thoughts elsewhere,
As member of a lawn bowls team that had become the premiers
I laughingly gave my team the proud title of ‘gazelles’,
Fleet of foot and dewy eyed, as those out there could tell.
We could never win a footrace, our handicaps too great.
We were absolutely chuffed, in a euphoric state!
The win became a pressure valve, the moment was to treasure,
After all my traumatic times, winning was a pleasure!

Bowls Premiers 2012
The “Gazelles”

Three rounds of stronger chemo, were then scheduled for me
To reduce the kappa light chains, still rampant and so free!

The increase in chemo dosage left me uninspired,
My capabilities diminished and I was very tired.
I lost my hair and strength, my mobility as well,
That journey had no map as far as I could tell.
Joy was always there for me each minute of each day,
Her support was never ending in so many varied ways.
I relied on her love and care, so strong and so unfailing.
I was pleased that she was there, though clearly I was ailing!

Imagine my disappointment when light chains were escalating,
Stronger chemo no longer worked; no longer regulating!
I was absolutely devastated when this news was told!
What was there left to do? What would the future hold?
A bigger shock was then announced, I had eighteen months at best.
The implication was enormous. How could I face this test?
Would the haematologist approve a cell transplant?
In spite of all the risks involved, would she my wishes grant?

The only way out was through, there were no shortcuts,
Each challenge met head on; there would be no ifs and buts!

Tests were done and analysed, a decision to infuse,
Stem cells they’d collected, now was the time to use.
I accepted the belief that the transplant would be tough,
The biggest challenge faced so far; – would this be enough?
I gathered my resources to improve my quest to live,
I knew a positive approach would be imperative!
September twenty twelve was a marker in my quest
To stabilise my illness, an outcome considered best.

Chemo proved to be effective, bone marrow was destroyed,
Into this impaired system, new stem cells were deployed.
The next ten days in isolation, immune system very low,
A time that was endured, as stem cells began to grow.
All I wanted was to sleep, and stem cells to rejuvenate.
When I was at my lowest ebb, all help I did appreciate,
Hospital staff I must applaud, their care was just superb,
To be there when I needed help and when not to disturb.

Focus on the moment, treasure the here and now!
The future would itself unfold; mine not to worry how!

Family support was very strong, throughout this tough ordeal,
Always being there for me and sharing how we feel.
Though the road ahead was tough, we’d all see it through
However in the next few days, so much there was to do.
I had to focus on the ‘now’, to give it my best shot,
Adopting a positive outlook I knew would help a lot!
I’d survived the stem cell transplant, as I was sure I would,
With light chains under thirty, which was considered good!

Friends I had grown to know, across the passing years,
Expressed their love and care for me; support that I held dear!

Home again to recuperate, to gather strength anew,
It took a while to realise that changes would be few.
That wasn’t time for looking back as damage had been done,
A new world awaited me, new battles to be won.
Mobility had been impaired, neuropathy in legs and hands,
Stamina was non-existent, hard to walk and stand.
Then I caught pneumonia, my immune system being low,
Accepting limitations, I had to learn and know!

2013
I found I couldn’t ride a bike, my balance was not there,
I couldn’t walk a city block; hard not to despair!

My stability was so poor I had to sell my boat;
No longer could I swim, and keep myself afloat.
By changing to an auto, driving became a breeze
I could still tow the caravan, accomplished with ease.
Travel to South-East Asia, was a special time indeed,
The support received from locals, met my every need.
It was nice to be free of chemo, life was more my own
Challenges still lay ahead, but what, just wasn’t known!

2014

Joy purchased a mobility scooter, especially for me,
It certainly increased my range, and things to do and see.

One could be forgiven, for believing I was fine,
Though light chains were stabilised, all was not sidelined.
Incontinence was a problem; function was impaired,
Bladder walls had hardened, amyloid deposits snared.
The solution was life changing; a catheter was installed.
That improved quality of life, but it wasn’t all,
Anti diarrhoea capsules would stabilise my bowel,
No need to know where toilets were, in case a system failed!

The Leukaemia Foundation through its meetings of support,
Helped us know and understand, the info that we sought.

Though teeth had been repaired, and were working well,
Without prior warning, there was much more to tell,
Several teeth broke away; just above the gums,
The after affects of chemo, ‘tooth fairy’ did her sums!
A reaction to nurofen meant hospital care.
Problems were not over – there was some more to share,
An infected gall bladder was later diagnosed.
That necessitated surgery, a problem then disposed!

Issues still presented, at a never-ending rate,
So hard to maintain, a positive mental state!

2015
Three years since the transplant, gave extended time,
The effects of the amyloid, continued their climb.
Just like my shadow, fatigue was ever stalking.
The mobility scooter was easier than walking.
Protein found in organs especially nerves.
Amyloidosis had impacted, quite easy to observe,
It was noticeable that capacities were shrinking,
The acceptance of that fact would dominate my thinking!

One game I played for midweek bowls, when lo and behold,
That day the team went premiers; the cup was ours to hold!

Immune system diminished; an infection took its hold,
Days spent in emergency, they diagnosed a cold.
Surgery has been scheduled for a hernia repair
It’s just another issue for which I must prepare.
Is this to be my ‘new normal’, to be accepted, defined?
Must my outlook on life be further refined?
Forever the optimist, I focussed on what ‘might be’,
Rather than dwell on issues that had befallen me.
I must be determined; maintain an intention to survive,
Minimise the challenges; continue to strive.

A colorectal surgeon was now added to the list.
Maybe there’ll be many more if this disease persists.

Challenges of pneumonia, gall bladder, influenza and such,
Could have been insurmountable, proven too much!
It would be exceedingly nice to have one year’s respite,
Without the many issues, which keep coming to light.
I do not know what lies ahead, what the future has in store,
But I’ll maintain my confidence; enjoy this day and more.
Support of family and friends, is a most compelling reason,
To experience the moment, enjoying each and every season.

The hernia repair was a great success,
An issue behind me, a step in the process.

December thirty first marks the end of the year,
The road ahead is uncharted and still unclear.
Increased “burning” sensations in feet at night
Mean things are certainly far from right.
My balance is continuing to deteriorate
And is increasingly harder to tolerate.
No doubt my story will continue to be told,
As twenty sixteen begins to unfold.

2016
January has been and gone, the new year’s underway,
And I am feeling positive as I welcome in each day.

A change in medications has improved my lot,
For two of my symptoms I have no longer got.
Pantoprazol and Deptran have been consigned to the past
And Lyrica for the “burning” we decided to adjust.
I now wake up in the mornings ready for each day,
The Deptran/Lyrica combination no longer hold their sway
By interacting with each other, causing me to oversleep,
The freshness I’m now feeling is something I must keep.

Autumn is here;
Alas, alack, the road ahead is hard to see,
Potholes remain, as does uncertainty!

Blood tests showed that light chain protein
Was down to twenty, the best I’ve seen
It’s heartening to have readings in the ‘black’,
Though potholes have arisen on this lonely track.
Another chest infection has laid me low,
Recovery from which is extremely slow.
To reduce infection that bothers me,
Immunoglobulins may provide the key.

Playing in a lawn bowls premiership team
Did wonders for my self-esteem!

March 2016

My immune system was compromised
By a stem cell transplant, I am advised.
Immunoglobulins provide a chance for me
To boost my health, and immunity.
Tomorrow I’ll spend five hours or more
Receiving my intragam as before.
Joy, as ever, drives me to and fro,
Making it easier for me to go.

Issues continue to raise their head,
Wherever the Amyloid path has lead.
My teeth continue to fracture and break,
After effects of the chemo I did take.
With fewer teeth to help me chew,
It’s now time for a dental review.
That will occur in a week or two
I’ll let you know what I must do.

Peripheral neuropathy is still a concern
As my feet at night continue to “burn”.
I’ve increased the Lyrica I take at night
And this has provided some respite.
Standing from sitting requires support
A continuing issue, I know is fraught
With the danger of falling ever there,
Reminding me to take due care.

August 2016

Shortness of breath is increasing now
I’m not sure of the why or how.
CT scan shows fluid on the lungs,
Could that be due to “leaking bungs”?
The cardiologist is the next to book.
He’ll see if my heart is making me crook.
I know my heart is seriously impaired,
Confirmed by info previously shared.

Several falls have caused me grief,
Caused I’m sure by the “stability thief”!
I’m working with a physio to restore
Strength in my lower legs once more.
It includes hydra therapy each week,
To help achieve the goals I seek.
Oh, and it’s appropriate to mention,
That my lung capacity, needs attention.

October 2016

For the first time in a number of years
Joy and I dispelled our fears, and
Like the legendary Ratty and Toad
Travelled Australia’s open road.
Our new caravan worked a treat
When visiting friends we planned to meet.
In Victor Harbor we stayed a while
It was great for us to “camp” in style!

November 2016

The lungs were impaired by fluid retention
Caused by the tablet fludrocortisone.
Now discontinued by Specialist decree,
I’m now a better functioning me!
Multiple teeth extractions are expected before
Christmas to enable the dentist to restore
My mouth by way of installing dentures, –
Just another of Bill’s new adventures.

I’m feeling better as each day passes,
And what I can do certainly surpasses
My capacity during the long, grey days before
Spring came and promised more.
The intragams are certainly great
Contributing to my better state.
Urinary tract infections are in the past
Improved health is here at last.

I’m back playing bowls, and with my friends
Winning more than our share of pennant ends.
I accept the new normal, It’s ‘what is’, I know,
Balance is ‘iffy’ at best, wherever I go.
I’ll look for new places with Joy to explore
In our caravan around this Isle and more,
There’s still much more for us to do
As our zest for life has begun anew.

January 2017

Christmas in the van was really great
Sharing time with Joy, my mate.
We spent some time in the Tamar Valley,
Very relaxing and exceedingly lovely.
We explored the Nabowla Lavendar farm,
And at Sea Horse World succumbed to their charm.
With the help of my brother we built a crane
To lift my mobility scooter without the strain.

I thought that illness was a thing of the past
That life would function and health would last.
But I shivered and my strength disappeared one day
An Ambulance came and took me away.
“They” think it was a urinary tract infection
But tests couldn’t confirm the doctor’s deduction.
Ten days of antibiotics were prescribed for me
To ensure my system was infection free.

2018

I’m still going, but physically can’t do much,
Unless sitting down or using my “Smart Crutch”.
Balance continues to be rather poor, and
I’m ‘furniture walking’ more and more.
My left knee could be described as stuffed,
But thought of repair has been rebuffed.
The challenge remains to think positively
About life ahead, and what it holds for me.

I thought that illness was a thing of the past
That life would function and health would last.
But I shivered and my strength disappeared one day
An Ambulance came and took me away.
“They” think it was a urinary tract infection
But tests couldn’t confirm the doctor’s deduction.
Ten days of antibiotics were prescribed for me
To ensure my system was infection free.

2018

I’m still going, but physically can’t do much,
Unless sitting down or using my “Smart Crutch”.
Balance continues to be rather poor, and
I’m ‘furniture walking’ more and more.
My left knee could be described as stuffed,
But thought of repair has been rebuffed.
The challenge remains to think positively
About life ahead, and what it holds for me.

(‘Smart Crutch’ trademark. A type of forearm crutch)

May saw a challenge I hadn’t planned for
When I fell sick with a lung infection, and more.
Possibly an outcome of the flu’ vaccination
After which I collapsed with a severe reaction.
I couldn’t breathe and was feeling low,
For several days it was touch and go.
Congestive heart failure was diagnosed
And fluid reduction tablets were imposed.

Lawn bowls has been a welcome diversion
Playing Division 7, providing weekly exertion.
I was the selector and played as skip,
“The Spider”, some were known to quip.
With crutches to support me on the green,
The strangest lawn bowler ever seen.
At the A.G.M. I received a presentation,
‘Best Club Person’, . . . cause for celebration.

Immunoglobulins each month, aid the fight
To reduce infection, to keep me right.
During June a hernia was repaired,
Another sign of a body impaired.
Strength in my right hand was under investigation,
Carpel Tunnel Syndrome, a likely explanation.
My medical journey is unlikely to end
As new challenges emerge, again and again.

October 2018

Sure enough, this tale continues once more
When a knee replacement came to the fore.
My left knee was sadly ‘on its last leg’
Worn out, considered a virtual ‘dreg’!
Hospital and then rehab. for four weeks,
Enabled me, with the physio  to tweak
My new knee, now able to move with ease.
I’m back home, and so immensely pleased! 

March 2019

,Oh dear! Is there an end to this story of mine?
Will there be a time when my health is fine?
Spironolactone is the culprit now,
Its side effects made me cry, ‘Ow!’, –
Whenever I touched or bumped my breast.
I discontinued the drug, ‘twas for the best,
And so I wait, to see what comes next,
The what, the why, and the context.

Of course the waiting time has been short!
Who would be foolish enough to have thought,
That nothing else could possibly happen,
That my disease would inevitably slacken!
Amyloidosis AL is stable and fine,
But the Waldenstrom’s Macroglobulinemia of mine,
Is unfortunately on the move once more,
At a rate my oncologist couldn’t ignore!

I can’t afford to dwell on this matter
Or engage in much unnecessary chatter.
The next few weeks I’ll have to wait,
‘Till April, it’s then I’ll know the date
When chemotherapy will start once more,
Maybe not the way it was delivered before,
But with drug company commitment/support
Waldenstrom’s  will once again be fought!

APRIL 2019

Oh dear, the uncertainty is ongoing,
Tension, stress is certainly not slowing.
Blood tests have shown that Waldenstroms disease
Is continuing to do as it pleases.
It is morphing into multiple myeloma!
Scary, and no, it’s not a misnomer!
A bone marrow biopsy and blood tests
Will determine future action that’s best.

MAY 2019

It’s a relief! We’re still taking it in!
Cancer treatment will no longer begin!
All tests have shown that my cancer is stable.
With treatment cancelled, I’m willing and able
To face the future with spirit anew,
With Joy, choose together what we can do.
Our caravan stands waiting in our driveway,
Ready to explore another by-way!

Bill Edmunds

4 thoughts on “Amyloidosis

  1. Thanks for sharing your story, Uncle Bill. I’m amazed by your optimism and your ability to continue to live your life against challenging odds. Not to mention, a damn good Bush Poet to boot!
    Regards,
    Toby

    Like

    1. Thanks Toby. Not too much of the Uncle . . . Makes me feel old! Bill is just fine. Life gets too hard when you are overly negative. I think of this journey as the ‘new normal’. I continuously adjust so I have experienced many ‘new normal’ s in the last 8 years. I appreciate your feedback, Toby, and look forward to catching up when we come to Melbourne. Bill

      Like

  2. Hi Bill
    I live in Brisbane and have suffered ATTR symptoms since 2009, although AF started in 2000. I was diagnosed in 2015 and have had a pacemaker fitted a couple of years ago to control the “falling down”. Compared to your journey mine has been pretty easy but I am in awe of your attitude and draw inspiration from your poetry. ATTR is a very different disease but there is currently no treatment available. Based on some American work we are trying the use of green tea extract and I can convince myself that this is slowing Amy down.

    Keep up the good fight. I look forward to much more poetry.
    Ray

    Like

    1. Hello Ray,
      Thank you for sharing your story. It is tough when fighting a rare disease. I found that I had to maintain a positive attitude, even when the going got really tough when undergoing my stem cell transplant. It is always good to find oneself on “the right side of the grass’, so to speak. I hope the green tea extract woks and that Amy beats a hurried retreat.
      You have re-inspired me to pick up my pen and scribe a few more lines.
      Best wishes Ray,
      Bill

      Like

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