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Category: Health

I hate checkups!

I started my first round of chemo treatments back in 1991.

I had just started a new job working with Dr. Dave and learning the ropes about the chiropractic clinic.   I was not even through my orientation and training when he intervened.  Let me explain.   After almost six months on antibiotics from my family doctor, I was (not so gently) encouraged to get a second opinion.   I came in for my shift, he sat me down and told me that he had made an appointment downstairs with a GP friend of his.  Please go.  For me.  He’s expecting you.   Dr. Dave, if I’ve not told you lately, we are forever grateful.

My doctor’s appointment was short, less than 5 minutes.   I was referred to Oshawa General, and was informed that the head oncologist had been called and was waiting for me in Emergency.   Do not pass go.  Do not go home.  Go STRAIGHT to the hospital.   RIGHT.  NOW.

Enter, Dr. Chiu.   His bedside manner was deplorable.    He took one look at me, announced that I had cancer, told me that I was going to be admitted for testing and I would start chemo as soon as possible.

A blur.

I was all of 19 years old, sitting in the emergency department with my love, but without my parents.   Dr. Chiu told me not to cry and Ron nearly leveled him.   Somehow, we told my parents, Ron gathered some clothes and incidentals, I blindly navigated the admissions process and called Dr. Dave to inform him that I was in the hospital and would likely need a bit of time off.     He reassured me that my job would await me.

A blur.

After three weeks of testing, poking and prodding, I was told I would need six months of treatment which would start immediately.    Fast forward through many appointments, blood tests, CTs and Nuclear med scans, hospital stays, surgery, biopsies and chemo over the next six months, only to be told that another devastating six months were required.  No only that, but I was to meet with Toronto General to talk about the possibility of a bone marrow transplant.

A blur.

I had been in remission now for almost 18 months.   It had been decided that the bone marrow transplant was not necessary as they couldn’t find evidence of the disease and it was a lot to go through on a hunch. The 40 lbs or so that I had lost the year before was starting to come back, my hair was starting to grow and I was finally starting to feel like myself and I had gone back to work, at a chiropractors office in Bowmanville.

April 14, 1993.

This particular checkup will forever stand in my memory.   I was prepared for a quick visit … get in, get out and go shopping with my momma.   It was our day to celebrate new beginnings, freedom from the clinics and appointments and freedom from the harsh drugs in my chemo cocktail.     The clinic was busy as usual, but I figured that I should be able to speed things up for the doctor and let him get on to the other patients that awaited him.

As I entered the exam room, chattering away happily with the doctor he began his routine exam.  How are you feeling?  Ok.   Good.  Do you have a good appetite….Yes.     All of the usual questions as he continued his exam.

Then silence.  Then.  Hmmm.  My heart was in my throat.

I had routinely been checking my neck in the shower each morning for signs of a lump, but a lymph node further up my neck was inflamed and concerning him.    The doctor agreed we should watch it for the next week, and if it didn’t go down on its own, it was time to do another biopsy.   “Don’t worry about it, go home, don’t lose any sleep over it.”   Sure.

A week later, the lump remained so I returned for a biopsy to remove the node and it was sent off for testing.   In the depths of my broken heart, I knew I was going to have to start again.   It didn’t take long for a diagnosis to come back from the lab.   Hodgkin’s disease.  Round 2.

I had two options.   Chemo to knock it down as per Round 1 and wait it out or high dose chemo with a follow up autologous bone marrow transplant.

I had already read everything I could get my hands on about the transplant process following my previous year of treatment.   With fear running rampant, I had one final question for resolution before I could move forward.

I’ve dreamed of being a mom for as long as I can remember.   The sleepless nights, the pitter patter of little feet, the first day of kindergarden, I wanted it all.   To try and resolve that remaining concern, I was referred to a fertility doctor that specialized in bone marrow transplant patients.    She told me that although it wasn’t impossible, the likelihood of ever bearing my own children would be very slim and likely not without serious medical intervention.  The drug cocktail required was a brutal one, and it would do irreparable damage to my reproductive organs.  I had to lay my precious dream down.  Into His hands it went.

I started my second round of chemo at Oshawa General on August 16, 1993,  almost four months from the time of that fateful checkup.  I stayed in the hospital for the first round and received my treatment twice a day for a week.   I convinced the good doctor that I was ok to go home for a weekend pass with promises to return Monday morning as an outpatient.    First round done.   No nausea.   Nothing.

This was a far cry from the chemo treatments I received the first time around.   When I started, they made me tired and nauseated, but I just wanted to sleep it off.  As the treatments continued, I started getting sick earlier and earlier each time.  I was starting to throw up just thinking about going to the hospital.   The team changed up my medication, and I started taking Gravel BEFORE I got in the car to go to the hospital.     Mom always made sure I wore jeans to the clinic so that she could lift my legs out of the car.   How she managed to get me from the car to the house, I still don’t know.   Well, I guess I do; she was a strongly determined momma with her groggy sack of potatoes.

Enter Zolphran.

Once this drug hit the market, my life changed forever.   ONE dose of this drug and I was taking chemo in my left hand while stuffing a sandwich, and anything else within reach, with my right hand.    I was hungry!

Dr. Chiu, very modest about his emotion on a good day, was more than a little delighted.   He had ordered a deli sandwich and my mouth watered at the smell.    So, after I finished my hospital lunch, I finished his too.   I know he went hungry that day on my behalf.   It was the most delicious thing I’d eaten in months.

So here comes a little “I told you so”.    I had applied for special approval to gain access to Zolphran in Canada well before it was formally released here.  I filled out reams of paperwork, and all that I still needed was a signature from Dr. Chiu.   He refused to sign it.   I was so upset.  Angry.  Frustrated!   Looking back,  I do understand that he likely didn’t have the time to read the finer details and wouldn’t sign it without doing his homework.   I did remind him, once the drug was released here in Canada just six months later.

The second round of treatments went just as well.   I managed to keep my job except for the week I had my therapy and the weekends I spent either at home or at the family cottage.

One of the side effects of the treatment was a very low blood count approximately 2-3 weeks following the chemotherapy drugs.   To stimulate my bone marrow growth, I was put on a very expensive drug called G-CSF (Neupogen).     OHIP did not cover this drug and as my parents were both self-employed this cost was completely out of pocket.   For fun, I googled the price of these drugs today.  A single dose is about $350.00.  I needed 10 vials.

I have a real fear of needles to this day.    Now not only did I hate getting them, I now had to give this one to myself.   Marg, my lovely primary nurse, taught me to self-inject so, once successful, I was sent home with the meds and instructions.    I did manage to give myself that first injection, but in the days following I chickened out every single time.   My loved ones rescued me for the balance.

I really thought that in time, I would get used to needles but that was not to be.   My fear and anxiety only increased over time.   My veins were very sore, very hard and almost impossible for the collection team to get into even with the smallest of needles.    Every time they saw me as their patient, I apologized and I promised them a sticker if they got it on the first try.   I got to know many of them and they definitely knew me.

I want to thank the wonderful doctor that invented the Hickman.  It’s a tube that enters the chest and sits directly in the entrance to your heart and allows access via a port.  “Installation” is a minor procedure, under a local anesthetic.   Every medication I received from now on went through the Hickman.  No more needles!   Most of the anxiety I felt about chemotherapy was now gone.   Even blood tests could be drawn through this wonderful invention.

Until.

Screen Shot 2016-09-27 at 4.55.52 PMMy line was infected.   We had a stretch of hot weather that year so after waking up with a temperature of 40.12 on September 1st, and after a day of struggling to get my temperature under control, mom drove me to the hospital at 8:30 pm.  Fever, chills, vomiting.  I was sick.  AGAIN.     One look at my pale face, the nurse admitted me to 7 main in a private room with reverse isolation.    I’ve never been happier to be in the hospital.

I have scarring on my left hand that makes it difficult to wear a watch or bracelet for any length of time.   My veins are the texture of a braided rope and my battle scars constantly remind me that we are an amazing creation.    Fearfully and wonderfully made.

 

Love always,

DABb21Ch7xc2

Extraordinary Gentlemen

Extraordinary Gentlemen

One of the happiest places in the hospital was, unbelievably, the chemo clinic at Oshawa General.    We enjoyed the morning news together, those hard candies that helped chase that terrible metallic taste of the chemo drugs away (they were HumBugs FYI), the hearty “good mornings” and “how was your week?”   We shared our diagnoses, our treatment plans, our coping mechanisms, hugged and supported each other.   Mom’s nursing background combined with her huge heart….naturally provided comfort to many even amidst her own grief.

You could immediately tell the newly diagnosed from the “seasoned veterans” in the room.   It was difficult to watch them wander in, struggling to find some even steady ground.    We welcomed them in, surrounded them….some stayed for a short time, some for a season.   Some we lost way too early.

The clinic that I speak of is not the shiny new LOVELY space that it is today at Lakeridge Health.   It was a space tucked into the lower level of the hospital.   It had room for half a dozen chairs inside, and we all lined up in the hallway outside.    We shared our collective highs and lows in that hallway….”I was to have been done in six months, but they tell me it’s going to be more like twelve”.  “We came in for blood work, and it wasn’t good news.”  “I’m in for a checkup and don’t have to come back for six months/a year…”.   We celebrated each victory and cried together when the news was less than expected.

During my time in the clinic, people came and went but there were a few patients that made a “permanent dent in the fender” in the best way possible.   There are two that stand out for me.

Bill Davis (and his lovely wife Margaret) was one of those warm souls that you’d be blessed to call your grandpa.  He was kind, very sweet and deeply concerned about my health and well-being.   It broke his heart to see me there each week.  We grew very close and it goes without saying that we were heartbroken when he passed away on December 17, 1991.    It was like losing a member of the family.   Mom and I had the pleasure of visiting with dear Margaret many times in  Ashburn and reminiscing about her sweet Bill, until, she too was eventually called home.

Anyone undertaking chemo at that time would likely have remembered Toley Wozniak.    Toley worked with the RCMP, was a detective for many years, was an avid curler if I recall correctly.   Honestly, he was the life of clinic.   It was hard not to gravitate to this magnet of a man.   A bright light…good for an influx of energy for the patients and the staff at the clinic on those days…he was better than any drug on the market.   A fighter!    As Toley grew weaker near the end, he wanted to spend a few minutes with me so, mom packed me up, wheeled me in, he delivered the … “chin up girl, my fight is soon over, but yours is NOT!” conversation.   I couldn’t tell you his exact words to this day.    All I remember is our very tearful goodbye and then … waiting for news.   A full police funeral was held in his honour in September of 1993.    I still have the announcement tucked away in my notebook.   There were bagpipes.   I likely don’t need to say more.

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Being surrounded by love, even the love of these strangers was a wonderful way of putting some of that brokenness and despair back into the light where it belonged.   Letting others help lift you out of the valley, having loving arms around you when you need comfort and the reminder to look up and trust that His eye is on the sparrow…..most amazing.

Many others impacted my journey, but these two warriors have stood firmly in my mind as extraordinary gentlemen.   I wrote a variation of these words 23 years ago, with them in mind.

Love always,

DABb21Ch7xc2

 

It’s time to do “Something”

Before I venture down this path let me just say, I continue to thank the good Lord for his watchful eye over this little sparrow.    It’s been 23 years since my autologous bone marrow transplant and I’m grateful that I can clearly see His fatherly hand…protecting and guiding me to this day…this moment, with you.   Whoever “you” are.

So why tell a story that’s 23 years old and counting?

A family member of a patient at Lakeridge penned a poem the other day about “Angels in Blue Plastic Dresses” and I’ve been thinking about it since.   It was a heartfelt outpouring of love and it captured perfectly the love I felt for my “angels in blue” who I still think of with great love to this day.   It goes further of course, to the doctors who, for some reason, choose this profession as their life’s passion (Dr. Chiu) and for every medical professional in their specific disciplines that all played a part in my health and wellbeing.   Emergency, Phlebotomy, Nuclear Medicine, Radiology, Surgery, Recovery…all of them!

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I tried to write daily during my transplant journey in 1993 and on the days I was too tired or sick to care; my mom filled in the blanks.  When finally we reached the other side of treatment days and home care nurses, I managed to compile all of my thoughts  into a nicely typed journal that I had planned to do “something” with.   Ok.  Now what?  I wasn’t sure I should put it out in the world or if I even wanted to.   I did circulate a few copies here and there but honestly, just like my blog now, it was my way of dealing with it all, finding a way to put it perspective and then even getting to a point where I was grateful for the journey.

“if you don’t learn anything in the valley, then the journey was just a frighteningly dark walk with no flashlight.”

 

My second birthday is approaching on November 5th.   It’s time to do “something.”

Love always,

DABb21Ch7xc2

PS.   If you find Robert, would you kindly hug him and any family members that will let you?   I’d be forever grateful.

Happy Birthday (again) to moi!

Today is my transplant anniversary.   To celebrate, J&A bought me a cake and my loving brother even made a banner for the occasion.   It’s been 22 glorious years.   I’ve officially been out of enough fingers and toes for 2 whole years!   YIPPEEE!!!!

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Sending you love, love, love for good health!

Love always,

DABb21Ch7xc2

The Good Dr. is my Friend….(repeat as needed)

So, little factoid.  I have high blood pressure.   It’s not a little high mind you….it’s to the MOON high.

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I came home after a business trip from Calgary in March of 2014 and I was feeling really worn out.   I had a cough so bad that finally,  one sunny Wednesday afternoon, my DAH (dear almost husband) and I headed over to the walk in clinic.   The good Dr. checked my BP, was quietly musing, then sent me downstairs for an EKG and ultrasound. By the time I was done the required testing he was waiting for me at reception.   He asked me to go directly to the hospital.   Like now.   Right now.

DAH to the rescue!   We made a quick side trip to my brothers to drop off my car.   OK, wait…I need to back up a bit to provide some context.   DAH and I had just started seeing each other again after 20 long years apart.   My family was not aware that we were testing the waters of something familiar but new.    Well, nothing like jumping back into things with both feet right babe?    I knocked on my brothers door, asked to leave the car in the driveway for a bit, then said, surprise!   You remember DAH?   They greeted each other like they’d just had a beer last week.   Hahaha.

Where was I.  Oh right!  DAH to the rescue!   When they took my numbers at the hospital my BP was a whopping 220/180.   They handed my health card to DAH and told him to get me checked in.    I was whisked promptly into emergency, the IV was started and doctors and nurses were milling about my bed.  There is NO WAY her BP is that high.   Check again.   Is this machine broken?    Give me a manual cuff…silence.     Turns out, I stayed for three days.   A bit of a cough.   I felt FINE…..who knew?    There’s a reason this disease is called the silent killer.  For (stubborn) women especially.

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Did I mention that 20 years ago, I walked into a doctors office, was redirected to the emergency room to the local oncologist and ended up undertaking 2 years of chemo and a bone marrow transplant?   No?   I’ll fill you in on November 5th.   My DAH was there the day I was diagnosed back in 1991 too.    It’s no accident that this man is in my life again!  🙂   What a blessing!

All of that background to say, I had my annual checkup today and kept repeating this line….”the good Dr. is my friend…the good Dr. is my friend” until I was up the elevator.   I say annual because it’s meant to have a yearly recurrence but in my case, it’s been…..20 years or so, outside of this little BP thing.  I was a ridiculously nervous but managed to exit the building without landing myself in the hospital.   Success!

Needless to say my blood pressure took a kicking today….white coat syndrome and all.   But after everything, do you really blame me?

Sending you love, love, love (for a very healthy day),

Shirl

A Stunning Diagnosis

We received a stunning diagnoses this week for an extended family member.  Shock waves reverberated through the community of family and friends as we all struggled to wrap our brains around the news.   Six months of chemo and a stem cell transplant.    Stunned.

I can attest that the road will be rough and all uphill.   You would think that someone in my unique position would have all of the right things to say at a time like this.   Turns out….there just isn’t anything that lands the way you want it.    The only thing you can do is show up with buckets of love.   Show up with a meal, offer to drive to appointments or just offer to sit on the porch and watch the clouds go by.

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And in true fashion, that’s exactly what happened.   Soon after everyone caught their breath, love sprung into action.   Family and friends dropped everything to pour out an extraordinary, unprecedented amount of love to the family.   Prayer requests were sent out, food delivery and chores requested, rides to appointments all being offered as a way to help navigate this uncertain and terrifying time.

The most helpful scripture during my own treatments was Matthew 10:30 and I’ll pass it on to her.

29“Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. 30“But the very hairs of your head are all numbered. 31“So do not fear; you are more valuable than many sparrows.

Mom used to sing the song to me when I was a little girl.   I didn’t realize how comforting this scripture would be until many years later.

Sending love, love, love (to another sparrow in His loving care),

Shirl

My Burden is Light

We were prepared for a long day.

Two friends in two different cities, with two different health concerns coming to very serious medical interventions.   Today we are reminded of, and even grateful for, our own very light burdens.

The day started honestly enough with a fire alarm at 5:30 am.   If you’d like to check to see if your heart medication is working, THIS is a brilliant way to get started.   Haha.  Bolt upright.  Confused.   Alarmed.   Now don’t fret.   We already knew that there’s something wrong with the smoke detectors in the house and had investigated various causes and solutions.   They go off randomly for about 5 seconds, then quietly resume their normal function.  You can bet that the “replace the smoke detectors” is now on the top of the list of things to do.

I wasn’t going to sleep much longer anyway.    As I awaited news from my bestest, I was a restless, uneasy mess.   Technology to the rescue!    For the next 8 hours we chattered through the hours of waiting, waiting and more waiting.  It was as good for me as I expect it was for her.

DABb2778SY4Surgery that was to have ended at noon, finally came to a close around 2pm with news that all was well.   No complications.   No four hour drive needed.   It was time to unpack the “just-in-case-I-need-to-leave-in-a-hurry” bag.  Thank goodness!

The other friend is a strong strapping fella capable of moving ANY obstacle in his way.    A fierce protector of his family and strong man on the farm.    This man was reduced to unbearable pain and agony after injury incurred while serving our country.   It’s going to be a long road of recovery but we pray for strength and for endurance for the days that are coming.   As the doctors dig towards diagnoses and treatment, we stand with you as family.

It’s been a true day of reflection.   With health concerns of those I love, along with the chaos of the world around me, I’ll gladly carry my light burdens without complaining.

I’m so very grateful for His blessing on a difficult day, for the prayer chain that lifted our friends to Him and for His steadfast love for His children, including little old me…his sparrow.

With great love (for others),

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Shirly (Irene) Vanluling
shirly.vanluling@vintageconcierge.ca

Celebration of an Anniversary!

In in a world where busy is normal and exhaustion is a badge of honour it was so wonderful to reflect on the past year with some old friends. Meet L.   A double organ transplant recipient.   If there’s ever a reason to be thankful for health and wellbeing, spend some time with this…