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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,

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