You were gone, long before you took your final breath.
Little pieces went away, in miniscule amounts throughout your cancer journey. What I didn’t realize, is that I lost myself somewhere in there too. Little by little, bit by bit….. I became someone new. Not because I wanted to, not because I had any desire to change – but because that bitch made me.
You know who I’m talking about.
All of a sudden we found ourselves sucked down into Cancer’s rabbit hole – Oncologists and CAT Scans and Treatment – Oh My!
All of a sudden I am speaking fluent Cancer-ese…. I know your body on an intimate level. That first meet and greet with the Oncologist was something I will never forget….. phrases like Stage 4, Non Curative, Manage Your Symptoms – how surgery and Chemo were off the table as far as treatment went, as the outcome is no longer curative with a Stage 4 diagnosis. I know that the hormone inhibitors started out doing their job and that the tumors were responding well to treatment for that first year.
Almost two and a half years later, you’re gone and I’m trying desperately to put the pieces back together – it’s like trying to refold a fitted sheet once you’ve taken it out of the package. Your mind knows what steps you should take, but the damn thing NEVER goes back the same way, like…ever.
But where there was darkness, you found light. You thought not having Chemo was a miracle, you wouldn’t have to lose your hair. We still laugh about that you know… never mind you’d just been given a death sentence…you still had your hair! As I said, silver linings – you always found one. I remember you felt that you’d dodged a bullet, and that your job was to do “Good” as long as you were here and able to do it. So you did meals on wheels for those who needed help, you booked 2 half days a week to bring some of your elder friends out to do their errands as they couldn’t drive. You took the time to call and check in on people regularly to make sure they were doing well.
You didn’t talk about your cancer diagnosis to others outside of your immediate circle – not because you were in denial, but because when you saw people you wanted to talk about THEM, not THAT.
I really respected that about you.
It’s been said that a patients outlook is 80% of the battle – if that’s the case you were a goddamn Warrior.
Fast forward to Aug/Sept of 2015… things weren’t feeling right. That’s when we discovered that the good ol’ hormone inhibitors weren’t doing their job – your primary tumor had grown even bigger than it was when you were diagnosed, and after further scans it was noted that there were other things popping up in places they shouldn’t.
12 sessions of Radiation coming right up!
That helped, things were beginning to shrink – but within 2 months they started to increase again. Not the news we were hoping for.
May of 2016 was the beginning of the end, looking back.
A 2 week hospital stay, something going on with your abdomen.
Many appointments back and forth between your local GP, and the Cancer Centre an hour away. More scans and tests… discovered that the cancer was progressing. You never really got back on your feet after that. You seemed to improve a little and then you’d get sick again. But pain was your newest symptom…bone crushing, couldn’t get away from it, freight train kind of pain. Nausea, couldn’t even keep water down. We discovered that the nausea was a result of the pain – it hurt so much it literally made you sick. Back to the oncologist we went….
I can’t tell you how horrific watching you suffer was. I don’t honestly know how to accurately put into words the HELL that helplessness is. I do know that our JOB became advocating for you. I learned the intricacies and pitfalls of organized/combined/multiple care teams and agencies. What a shit-storm that can be! The main focus for us was for you to feel safe and secure, and be pain free.
The oncologist suggested a brain scan – that was the only thing that hadn’t been looked at. Nothing you had could cause or explain the symptoms you were having at this point. And you know what? I KNEW. Before it was even suggested to you, I knew it had spread to your brain. It was the only logical explanation. But it was also the scariest … because once it affects your brain, there’s nowhere else for it to go. We were nearing the end of alternate options. Having quickly learned that I now conversed in more medical speak than I ever thought I could possibly understand, speed reading through lab results and scan reports like a pro – I felt the heaviest ball in the pit of my stomach, the weight of a thousand worries on my shoulders.
You were taking part less and less in these appointments.
You were so DAMN tired of having to answer the same questions multiple times, with multiple care partners – seriously… do they not read the reports that we’re required to provide? How maddening is that, when your cognitive functions are playing hooky sporadically, and you’re trying your damndest to keep the details straight.
Idle chatter consisted of you oh so nonchalantly giving suggestions for songs to play at your funeral. My throat was SO raw from trying to appear unaffected and hold back the tears because a) I didn’t even want to THINK about your funeral and b) I wanted you to be able to talk to me about anything that was on your mind, and I knew if I blubbered you’d feel bad and hold back. You raised us to be able to come to you with anything, and not to ever be afraid to talk to you … I wanted to give you the same thing. What I never realized until then, was how hard it must have been for you to hear what we had to say sometimes. Thank you, from the bottom of my broken heart for doing that for us.
The last 3 months of your journey were exhausting, heartbreaking and awe inspiring all in one. You were so strong, Mom.
So.Damn.Strong.
More radiation, this time for the brain to reduce the swelling, and your new symptoms of pain and nausea attributed to the brain swelling. You being you, decided we should get your Christmas shopping done so all the kids and grandkids were taken care of. No rest for the wicked, even though you were exhausted from the treatments and symptoms. So shop we did, you sat and I pushed the wheelchair. You were like an octopus! You saw, you grabbed, you conquered!
You taught us so much about faith, resiliance, and love.
It was your wish to remain at home as long as you could – and it became our MISSION to honor that wish. Our love for you pushed us far beyond our comfort zone, and what we thought were our capabilities. We became your care team. We were the guardians at the gate, who advocated and fought for you and what you wanted. We kicked out the PSW’s and took over…. you didn’t want strangers in and out of your home. What mama wanted, mama got. When you became bedridden, we moved the recliner to your bedside and took shifts so you were never alone. You didn’t wake up scared and in pain by yourself…. we were there always. Sleep became over-rated, our backs were a mess from transferring and repositioning as required. Morning care got dubbed “Morning Torture” because although we had to reposition you to prevent bed sores, it wasn’t the most pleasant or comfortable process for you. We tracked pain med doses and celebrated those elusive moments when you were awake and lucid. Those were few and far between at this point. We talked to you, we held your hand and caressed your sweet face.
I know I grieved in degrees throughout your journey, I mourned every little loss there was. From losing your ability to find the right words, to not being able to do your beloved crossword puzzles or write a letter or note without your thoughts being scattered, or your writing being all over the place. It was so hard to watch such a scholarly woman lose the ability to do these things we all take for granted. I grieved when I heard you speaking to people who were long dead….and at that point I knew that you were already starting to transition between two places…here and there.
I remember telling you that it was okay to go. That we would be okay, and that we would all love and take care of each other the way you taught us to. I whispered in your ear, saying “Don’t be scared mama, the best is yet to come.” It was one of the most difficult things I’ve ever done, but I knew you would linger if you thought we weren’t ready, or didn’t give you permission to go. I’m glad you couldn’t see the tears streaming down my face, and I hope you felt the love that was coming from the depths of my soul. We all took turns telling you it was okay to go, that you didn’t need to suffer any longer.
3 days later and you were still hanging on… you never did take well to being told what to do! We joked that it was just typical of you, and we could almost hear you saying ” I’ll go when I’m good and ready – not a moment before.”
I remember the hours of those last days, not wanting to go to sleep because I was afraid you’d slip away while I was sleeping. I distinctly remember thinking ” I haven’t come all this way on your journey with you, to miss out on the end.”
And when it came…. I wasn’t ready.
In the two and a half years of your cancer journey, I went from being your child to your advocate, your nurse, your slayer of dragons, giver of meds, medical chauffer, live in companion, I championed your good fight with all that I had. In all the hustle and bustle of tasks, appointments, tests and treatments I fought like hell to keep you here, to keep you safe and honour your wishes.
For someone who lingered, you sure as hell didn’t waste any time when you decided it was time to go – 3 breaths and GONE! With all of us surrounding you, with our hands still holding you, I watched you take your last breath. I saw your spirit leave your body with that last exhale … you were gone. It was SO fast.
In the space between your last inhale/exhale it hit me like a freight train. It was like when you gave me that push on my little purple bike all those years ago, letting me know I could ride like a big girl … only this time exhilaration was replaced with terror.
Stark fucking TERROR.
The loss was immediate.
All of a sudden there I stood, feeling like a little girl afraid to face the world without her mama. I had tricked myself into thinking I was ready, but at the end we all realize we’re never really ready to let go. I’m a wife and mother myself…but in that moment I was your baby, and I just wanted a little more time. Just to look into your beautiful eyes and hear you say I love you once more. To thank you one last time for EVERYTHING. To repeat every single thing I had told you over those last weeks because in the end, you always feel like you’ve forgotten something. There was one thing I hadn’t yet said, so I leaned down close and whispered in your ear “Rest easy, Mama…tell Dad we love him.”
We prayed over you, some of us *cough* were a little rusty as we didn’t all have the same strong beliefs that you did. But we remembered the words of our childhood, and prayed you out, as one last show of solidarity, love and respect.
I didn’t realize just how difficult or stressful funeral arrangements could be – OMG, who would have EVER thought that deciding on flower arrangements could be so agonizing?! Trying to remember all the likes and dislikes….stressing over the right shade, and knowing you’d haunt us til our dying day if there were any red flowers in your arrangements. And your outfit, that was a tough one too. You got your song selections for your funeral, it was a beautiful ceremony and celebration of you. When it was over, the amount of free time was a challenge. I honestly didn’t know what to do with myself. The days felt twice as long and the loss was soul deep.
Seeing you off on the final leg of your journey is the greatest privilege I have ever known, I am so very grateful that we were able to do this for you, and for ourselves. All the love you gave in life came full circle in the end, mama. I hope we made you as proud as you’ve made us. xo