My first note to my beloved Sugar, a recap of our short battle with cancer

My darling Sugar,

It was on New Year’s eve that our new normal changed nearly each day.  On that night, when we expected to learn that you needed to have your gallbladder removed, we learned that it was probable you had metastatic disease.  You were only 40 years old. I think we both went numb in that moment but quickly decided we would take whatever the diagnosis was and we would fight.  We had our magical little 14 month old daughter to keep us focused.  Your amazing sister immediately became lead warrior princess and put her own life on hold to help us figure out how to manage this new one.  She was and still is optimism personified.

Fast forward to a couple of weeks later when a biopsy and several tests confirmed that you had stage IV pancreatic cancer – pretty much the deadliest of all cancers.  This didn’t stop us from being optimistic.  The docs told us that due to your family history of cancer on your mom’s side and your very young age (the average age of a person diagnosed with pancreatic cancer is 70), they suspected a genetic mutation in your BRCA gene.  This was recently made famous by Angelina Jolie who had both breasts removed when she discovered she carried this mutant gene.  The good news was that if you did have this mutation, they had a form of chemo to treat it.  Unfortunately, the tests came back negative, so off to a very aggressive form of chemo we went!

8 weeks of this chemo later and you had lost a lot of weight.  Pretty toxic stuff they were pumping through your body for a full 3 days every other week.  Throughout it all, you remained positive and tried your best to eat when you felt nauseous and to spend time playing with our toddler who you loved so very much.

8 weeks in and scan results day was upon us. You had been experiencing much less pain than you had in January and we were certain we were beating this thing.  To our shock and disbelief, the cancer and continued to grow and spread – exponentially.  We allowed ourselves one night of pity and anger and promptly hit reset the next day, ready to fight with another form of chemo.  At the same time, our faith in “modern” medicine wavered and we already knew there were holes in the system as the doctors wanted to pump you full of sugar-filled Boost to keep calories in you.  What’s crazy about that is that sugar FEEDS cancer cells and with a compromised pancreas, sugar was the last thing my Sugar should  be ingesting.  So we hired a nutritionist, a dietician, two naturopaths, an RMT, a yoga instructor, an acupuncturist and a reiki and we FOUGHT.

We were able to fight thanks to an incredible support group led by your amazing elementary and high school friends.  There was no way we could have afforded the “alternative” treatments without their fundraising efforts.  We were humbled and inspired by them every day.  They became our fellow warriors in our fight.

We did one full 4 week cycle of the new chemo alongside our very aggressive natural methods which included hyperthermia treatments.  At our next scan result appointment, we were once again disappointed (though less shocked) to learn that the effing cancer continued to spread.  We still remained positive as you’d been feeling much better with the natural treatments and foods.  You had your energy and appetite back.  At that follow up appointment on March 11th, you asked your onco the hard question “how much time do you think I have?”.  His response was 1-2 months.  Our hearts fell, but we already knew that this onco didn’t believe in anything but chemo so we weren’t surprised by his prognosis.

On Good Friday, we held a small family potluck in our condo party room and you were a little more lethargic than normal and had to skip much of it.  The next morning you filmed your “just in case” farewell video to our baby girl.   Immediately after you filmed this, your temperature spiked to a fever of 39.7, your feet swelled up and you were very jaundiced.  Off to the hospital we went.  Many procedures and 5 days later, you were sleepy from your procedures but were discharged and we were off to your next hyperthermia appointment.  You were very sleepy the entire day, but when we arrived at home, you were hungry and asked me to make you scrambled eggs and a home made smoothie – both of which you devoured.

The very next morning when you awoke, I asked you what I could make you for breakfast.  You indicated that you wanted a steak like the one you could see on the flyer on the bed beside you.  There was no flyer.  This was the first of many hallucinations.  You were also unable to swallow more than a sip of water or smoothie at a time.  I called your family and told them they should come and see you as I didn’t know how much longer we had.

Your wishes were always to take your final breaths at home if it came to that and we were prepared to ensure this happened, however, on that Saturday your health deteriorated so quickly that your sister and I had to make the tough decision to move you into a palliative care unit.  We informed you of this during a moment of lucidity and our goal was truly to get the experts to help us get you strong enough to get back on track with your natural treatments. Thanks to a wonderful palliative care doctor who had stayed close to us throughout our journey, we were able to get into the best unit the very next day.

The day we were admitted to the unit, the nurses marked you down as being alert and responsive – you did still have moments like this, where you could even recite the date (which I didn’t even know!).  After your bloodwork was done, the doctor called to inform me that you had high levels of calcium in your blood which was causing the confusion.  It also meant the cancer had spread to your bones.  That afternoon, a fundraiser was being held for us in order to fund your ongoing treatments.  We kept up with it via the Twitter feeds and were again overwhelmed by the kindness and support surrounding us.

The next day was a Monday and your friends who had travelled from various parts of the country had asked me weeks prior to book you for a day with them.  I was only too happy to grant them this request and the idea was that they would take you to your next hyperthermia appointment.  Unfortunately, that morning your cancer spread so quickly and you were in so much pain that you had to be sedated while they sorted out the pain medication to keep you comfortable in your final days.  This day was by far the most painful, difficult day of my life as you were looking me in the eyes and the only sound you could make was moaning.  I wrongly thought you were trying to tell me something.  I asked the roomful of family and friends if you’d told them something that you might want me to know.  We came up empty.  We learned that you had a hole in your abdomen which was causing you much pain and likely the moaning sounds you were making.  I’m sure you were trying to scream out “more painkillers, please!!”.  This went on for most of the day.

With each day that followed, you became more and more comfortable and your breathing became softer.  Your sister and I slept in your room with you each night.  We didn’t leave that hospital floor for a minute out of fear of leaving you alone for your final breath – something you told one of your good friends you were very afraid of.  Four full days of being in that room watching you die…  I wanted to be there with you, there’s nowhere else i would be, but it’s something I wouldn’t wish on anyone. Humanity in the healthcare system needs an overhaul.  If our pets were struck with an incurable disease or injury, we would give them a couple of injections and their lives would end quickly and peacefully.  As humans, even when the doctors know that there is nothing further that can be done to save us, they give us just enough pain killers and sedatives to allow our bodies to starve themselves to death and our organs to shut down slowly.  It’s so unfair.  I am so very sorry that I couldn’t do anything to prevent you from experiencing such pain in your final days. It’s what haunts me the most.  That and the fact that I never asked you how you felt about death and dying, if you were scared, if you wanted to talk about it.  I was so damned focused on keeping us positive and fighting that by the time I knew we were losing, it was too late and you were no longer able to talk to me.  Sugar, please forgive me for not allowing you to share these feelings and fears with me. You were a private person and I know that if you were to share with anyone, it would have been me, but I didn’t allow it, wouldn’t hear of it.  My hope is that you weren’t scared and that you didn’t hurt, but I will never know.

You took your final breath at 12:05 AM on Friday, May 2nd.  It was the first night that your sister and I weren’t holding onto you.  We were joined by her best friend who I’d only met a few days before and she is a magical person who I hope to get to know better.  She also loved you very much.  It was your sister who noticed that you stopped breathing.  I awoke to her beside me with her head raised, looking at you.  I said “What happened?”.  She said “It’s quiet.”.  And sure enough, you were no longer breathing.  We called in the nurse who had just been in at midnight and you were still breathing then. For some reason we’ll never know, you waited until that Friday to take your last breath.  It could be that you waited until we were all asleep and you were truly alone (something that apparently happens more often than not in palliative care situations), or maybe just maybe you didn’t want to ruin Thursdays (my favourite day) for me.  This is something else that we’ll never know.

You know how obsessed I’ve always been with spirits and the after life – I subjected you to many a horror movie, paranormal documentary and ghost walk.  Now that I’m faced with the possibility that you’re living somewhere on the other side, I’m not sure what I believe.  What I do know is the Thursday before you passed, your sister and I worked with the nurses to bathe you, change you and shave you. The one thing we couldn’t do was brush your teeth.  The night you passed, your toothbrush which was in a ziplock bag on a shelf above the bathroom sink somehow found its way into the sink.  Knowing the great care you took care of your appearance and especially your teeth, I suspect that you were grabbing your toothbrush to care for your pearly whites from the other side.

I keep hoping that you’ll send me some sort of obvious sign – the smell of the baby powder you always used, changing the TV channel to sports, or even talking to our toddler in a way that she will answer you clearly when in my presence.  So far there have been a few small things… Our cat who you liked to torment has suddenly started to hiss on a couple of occasions as though someone is touching her, malfunctions with a TV remote and most recently, our toddler looked into my eyes and said “Daddy?  Kiss him.”   That last one really got to me as I thought she was asking for you, but perhaps she was telling me she saw you and kissed you.  I know that she can see things I can’t and I do hope she can see you.  Please know that she does talk about you and will always know you through memories – stories told aloud, pictures and videos.

I do hope that you were able to hear all of us when we spoke to you during your final days and that you know just how loved you were – how loved you will always be – by such an amazing group of people.  I hope you know that you were the best daddy and husband and that you never felt taken for granted.  You were my best friend, my husband, the father to our magical daughter, my soul mate, my Person.  I miss you every minute of every day and will write to you here as a way to stay in touch.  I don’t yet know what my future posts will look like but as my Person, I told you everything.  I shared my highs, my pet peeves, my lows and you always listened and did what you could to help.

Talking to you in this way will hopefully allow me to get my feelings out and focus on my new, surreal life as a young widow and single mom, but mostly I hope it will help me to stay connected to you.

I love you my Sugar.

Your Sweetness

 

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2 thoughts on “My first note to my beloved Sugar, a recap of our short battle with cancer

  1. What an out pouring of love this post is. What a story. The part that really left out to me was about the tooth brush finding its way into the sink, and you believing he wanted to take it with him.
    In my husbands hospital room I had stuck up photos of family and his son. Mainly for all the nurses and doctors to see who he was, rather than just a patient. Those pictures had been up for two weeks and not moved. The evening before he passed I had a very powerful, spiritual moment with him. In those moments a photo of him and his son that I had taken whilst we were on holiday in Cape Town (where we both grew up) fell down in front of me. Perhaps he was taking that snapshot with him. He was SO proud to be a Daddy.

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