H is for Herceptin

Herceptin is a drug commonly used for HER2+ breast cancer which is what I have and accounts for one in 10 breast cancers. People with stage 4 cancers of all kinds have been on Herceptin for years and it seems to keep further growth at bay. I like to think of Herceptin as a soothing balm that calms the receptors into a quiet slumber resulting in less of an urge to awaken and grow.

Herceptin is usually given in conjunction with another drug such as a chemotherapy drug or other medications. My initial cancer treatment back in July of 2017 included this regime of a chemo drug and Herceptin. When scans show that cancer starts to progress, called disease progression, the medical team has to decide which next line or option of treatment to follow.

Our health care system for cancer care is called Cancer Care Ontario and is run by the provincial government. It dictates what these lines of treatment are as a standard of care for all cancer patients as well as what is covered and what is not. It determines which drugs are combined for which type of cancer and when one stops working, which line you move to next. Oncologists run down the line of treatment options for the specific cancer until there are none left.

The catch around Herceptin is that once you are given it and then taken off of it because the course of treatment did not work (as indicated by disease progression), you can never receive Herceptin again through Cancer Care Ontario. You must privately fund it yourself.

Here is the issue with our healthcare system and this particular case: You are rarely on Herceptin alone. There is always another drug accompanying it. Therefore, if there is disease progression, there is no way to know if it is the Herceptin or the other drug you are receiving that isn’t working. Herceptin can very well be keeping all of the other parts of your body safe from metasticies and as in my case, only the tumors in my lungs are growing.

I should mention that the only way to get back on Herceptin is to be in a clinical trial. Thankfully, this was my situation from September 2018 until now. I could get Herceptin every three weeks with my other oral trial drugs that I take daily.

Today we know that my lung masses continue to grow at a fast rate. My doctor predicts that left untreated, or if they continue to grow at this pace, I will have symptoms within a few months. A cough, difficulty taking deep breaths and getting winded after physical activities. If it keeps progressing, breathing will become increasingly difficult and I’ll need an oxygen tank. We are not there yet, but receiving this news put things right back to day one of being diagnosed. You wonder if this is the beginning of the end. It is a new chapter that’s for sure.

Cancer is so smart. It only took five months for these tumors to resist the medication that showed such great results in the beginning.  I have to believe that we are smarter and at least able to continue to buy more time by consistently adjusting to new therapies.

But back to Herceptin. I will not be receiving this in my next line of treatment. I will only receive a true chemo drug that is infused every week for two weeks and then a week off. It comes with the same side effects I had to deal with before which is possible hair loss, neuropathy in my hands and feet, nausea and of course, dangerously low white and red blood cell counts. Infection is the biggest risk, so I will be sequestered to my home and won’t be at any public functions. Hopefully this drug shrinks the lungs. If it doesn’t, there is another trial I can go into at Princess Margaret however, it’s for a drug that I was on before and it had little results, but it is a souped up version of that drug so we will give it a try.

I need Herceptin. It can be what is keeping growth at bay throughout my body. We are looking into private clinics where I can have it infused, as even if I pay for this myself, it will not be administered in an Ontario hospital due to the restrictions on me not qualifying for it.

I’ll be connecting with my local MP about the fact that women need access to Herceptin. It’s a proven drug with excellent results but because of the way our government has set up lines of treatment for standardized cancer care, so many people do not qualify for it. It could mean the difference between life and death. It’s not even as expensive as some cancer medicines. For example, the new treatment I will be on costs $5,000 USD per cycle (2 infusions). That’s almost $10,000 a month covered by the Province and Herceptin is far less than that.

If I pay for Herceptin out of pocket, the drug company will give me a 20% discount on the cost (“You may be able to talk them into 25%” someone told me). If they’ll give me a discount, can’t they give the government a discount, too, and fund more of this drug?

Ontario is known as having an antiquated and complicated system for drug coverage and reimbursement when compared to western provinces especially. Here is an excerpt from an article by a doctor at Sunnybrook hospital: “Some of these new drugs don’t actually cure the disease or significantly prolong life, says Dr. Trudeau. Instead, they may ease symptoms and make what time remains more bearable. For cancer patients and their families, the improvements in the quality of life may seem priceless. But for policy makers, dealing with competing demands for limited health-care dollars, the benefits may not be so clear-cut and they may conclude that a pricey drug does not provide value for money.”

So there you have it – policy makers naturally make everything about the almighty dollar and not the extra months or years I may get with my family.

As usual, we will be strong and keep swimming and when all else fails, we lobby the crap out of our elected officials and advocate for better access to drugs that so many people assume is covered because we live in Canada. My example is only one of many. There are other stage 4 drugs for women that are not covered and have received press and political attention. Our voices together are much louder and I hope this paves the way for others and my children so that our broken system doesn’t let them down in the future.

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the help

As luck would have it, there isn’t a Hallmark card for every occasion. Just ask anyone who has learned that a loved one has been diagnosed with a critical illness. I’m a huge fan of cards; I used to make them when I was little and gave them to everyone I held dear such as my favourite aunt, a beloved friend, or the strange lady up the street named Mrs. Swan who always smelled like Jean Nate and had a gazillion Royal Dalton figurines in her curio cabinet. Cards were and still are my way of saying, ‘hey, you matter to me and I hope that whatever occasion is upon us is filled with love and hope’. Unless it’s for a deceased pet because then you have to print off a copy of Rainbow Bridge and enclose that.

Turns out, there are cards for cancer. Some cheeky ones that I tip off my hat to and mostly, pretty pathetic ones with people’s fake shaved heads cradled in a caring friend’s hands. Seriously. These are the options?

So many people say that they just don’t know how to help someone going through a hard time. I have a few ideas on how we can all help each other to be mindful, respectful, helpful humans to one another on a good day, and on not-so-good days, too.

Ask and you shall receive. People usually mean well when offering help and don’t think about how their contribution is being received. After all, beggars can’t be choosers, right? Wrong. First of all, no one is the beggar in this situation-  gawd!

Ask what the person needs. Instead of showing up with a lasagne, ask if her family even likes it or needs it because I can guarantee she already has three. Ask if she has a deep freezer, too. She can’t eat what she can’t store so asking what her family needs and likes are a sure-fire way to ensure your meal is enjoyed. You don’t have a window to her world and therefore don’t know who else is visiting, cleaning her house, cutting her lawn or taking her kids next weekend. Asking takes the guessing and awkwardness out of the equation.

Start with what you CAN do. Think about the ways in which you can help your person and make a list. Maybe you don’t like to cook or you work shifts and cannot visit – that’s totally okay. Perhaps you love to go for walks and could offer to take her pup or kids to the park one evening every week. Maybe you love Costco and could offer to pick up a few groceries and drop them off. If you know she does a lot of carpooling or driving to various kids’ activities, offer to swing by and take this task off of her list. If you can do something, then offer.  People typically say one of two things: ‘Let me know if you need any help’, and, ‘I don’t know what you need so I’ll just wait for you to tell me”. Instead of waiting or committing to things you may have to cancel, start with what you are able to do. Even if it is one small thing to you, if it’s something she can rely on, then believe me, she will appreciate it and you will both feel good about giving and receiving specific help.

A complicated kindness: Don’t make her take care of you. By throwing help at your friend without asking, you are actually creating extra feelings or problems for her. If you wish to visit, make this a planned event with a set start and end time. Don’t take the opportunity to pick up her kids or walk her dog as an invitation to catch up. She’s not in that mindset and is likely busy, tired and not feeling great (or all of the above). If you do plan a visit, check-in with her on the day of to ensure it’s still a good time and check-in again during your visit. It’s okay to say, “You know what, I’m going to get going a little sooner than planned if that’s okay with you”, especially if you sense she is tired or her kids need her. The best way to ruin a good visit is to leave your dishes on the coffee table or disregard the mess your kids made together. Be a tidy guest. 

Commit and stick with it. Do your very best to stick to your plan for help. She has likely created a schedule of who is doing what and you are helping her to tick a box somewhere, whether it’s a meal or bringing in her recycling bins. You’ll both feel better when there are no last minute cancellations. Intentions do very little if the person has no idea you’re thinking of them so take the time to be a good friend and ask if you can _____(insert task here).

Save your Sympathy. It’s easy to feel bad for someone. Bordering on pity, sympathy is when we feel bad for what someone is going through. Empathy is actually putting yourself in their shoes and imagining how it must feel. You have sympathy when you want to run to someone and fix them or their problem. Patch them up, then go on your way. Empathy is feeling. It’s hard.  A favourite quote I recently found says it perfectly: “Often we think we are showing up for someone when really all we are doing is showing everyone how great we are at showing up”. Sympathy will not help your friend and I can almost guarantee that a woman fighting a critical illness wants absolutely nothing to do with your sympathy. Try on empathy for a change. It’s much more challenging to do and so much more powerful.

Let thee who casts the first stone...Don’t judge your friend. You have no idea what she is going through because each person’s journey is completely different, not to mention that we are all unique. Even if you have experience with her illness or challenge, yours was just that, yours.  Judgment is such a tricky and harmful thing. If your pal wants to work while she is battling, or start running again after surgery, trust that she has a good team of medical professionals on her side and that she is doing what is right for her. Just because you would do it differently doesn’t make it wrong. Support her decisions and when you don’t know what to say, listen.  Be comfortable in your silence and let her talk. Her words are important and offer insight into the deep feelings and questions she probably has.

Remember that your friend is still the same person. She has to run a household, put on a brave face for her family and likely will want to do anything that keeps her feeling like she has some level of control over her life. Helping her through this time doesn’t always mean tangible actions. There is power in kind words, a phone message (hearing a friend’s voice can be a balm for the heart), or the old fashioned, handwritten note. If you can naturally and seamlessly become an extension of her world, you’ll both feel so happy and grateful for the chance to share in the gifts of gratitude, compassion, and love. And when all else fails, send a card!

BCShitty

the breast of me

This weekend is always a biggy for me. March 8th marked six years since my first diagnosis and March 11th is my sweet angel girl’s sixth birthday. Each passing year, the days become less bitter and more sweet. They remind me that anything is possible and that even in the thick of sad, depressing or anxious moments (or days), it’s okay to feel those feelings and let them come. Only through them, will I see new light and the light, always comes.

This year really got me to thinking on mothers.

Why does God take mothers? It just isn’t right. It doesn’t matter how old you are or how old they are when the time comes. Mothers departing is up there with the hardest of the hards.  

There’s a secret way mothers get to their kids in ways no one else can. Mostly that’s a good thing. You see, we hold the keys. We are at the garden gate, waiting for them. We reach for their hands before they even know they need something to hold on to. We have taken a breath to utter the words that will soothe them before they even know they need to hear our voice. Our eyes are at the ready, every second they are awake and every moment they are asleep. We are waiting. We are the protectors. We sit silently as they make mistakes, only to hold such agony in our hearts knowing what will come next. Our steadfast embrace is always open, even wider when they feel they don’t need us. It’s when they push against us that they need us most. And it’s okay that they don’t know that yet. It’s okay that they think we don’t know or understand the difficult and tumultuous lives they lead. It’s okay for them to be angry with us.

From a broken crayon to a broken heart to losing a friend to losing a job….they are all big losses in their own way and we are there to hold them tight. In those moments. Of stillness. Of fear. Of the unknown. Of what lies ahead.

Mothers also know how to let our children fly. We raise them up to let them go into this world so confident and free. All of our moments together lead to moments apart. Whether it’s their first sleepover or off to college or moving out on their own, hopefully, before they’re 30! Mothers are always there. A text away. A car ride, a plane ride away. We can see them, talk to them, hear them. And we know when to take a backseat. If they don’t want us around, that’s okay too, it never lasts long.

And so I cry. Because mothers should be the last ones to leave this earth. We can take on the most immense and intense pain and suffering. Hand it to us and we will only rise above. Every time.

Truly though, they have the best of me. When I am in my prime, and at my very peak. And this hand I’ve been dealt has given me a longer time at the summit- if I am even there yet – there is still so much more to come. I get to make this supernova last and last. And they get to have that part of me. The best of me.

My sister too has been blessed with the choice to make her light shine for as long as she can.  You see, because of me, she has a far greater risk of developing breast cancer in her lifetime. She qualifies for a voluntary or prophylactic mastectomy. And she will be doing this in a week’s time. She reduces her risk from 40% to 4%, which are odds that are forever in her favour.

She is a previvor – someone who has the chance to most likely survive breast cancer before it occurs. She is outsmarting the smartest of maladies. She has the opportunity to exercise control and decisions over her body and give herself the gift of life.

My family and our children have this, too. The chance for high-risk screening programs, early detection testing and greater access to care and prevention. This is what mothers do. If it means we can shield our kids from future pain, we do it. My sister is a warrior mama now. She gets to decide when she fights and that fight is now. She has always been very brave, risking life and limb for any animal in distress and she is the smartest person I know. This decision has been two years in the making (well, probably six:) and is major life-promoting surgery. I am so proud of her. I am also very happy to know that one mother’s cancer is another mother’s peace of mind. For this, there is no price too dear. To live is worth it all.

Together, we have learned so much while walking this twist in our path. More empathy, compassion, understanding of so many topics and interesting dinner table conversations such as mastectomies and implants and women’s choices for their bodies and boobies and resilience and science. I hope it will help our children face things head on and make decisions that are right for them. I hope they feel empowered to ask questions advocate fiercely for themselves and others. Having watched two of my three children mature into young adults, it gives me great comfort knowing that my last, my angel girl sent directly from the heavens, will lead a wonderfully fulfilling life. And when I’m gone, they will continue to find peace and solace in each other and support and love in the strong circle of trust that surrounds them. We are woven into such a powerful network that will only grow stronger as the years go on and remain a haven for them when they need it. I am so grateful for the village that nurtures and nourishes each of us.

And so, with the best of me, I will walk ahead every day with my head so high and heart so full. Even on the days when my mind runs in every direction and nothing feels certain (because nothing is), I will remember that I am connected to all the mothers. A sacred universe where our children are our one thing and our everything. Where we watch and wait and cheer and shine. With each other, for each other. You got the best of me and my best is yet to come.

at last

There is no way to prepare for the day that the last of something happens. The moment that you thought was just another instant; something routine, mechanical and on auto-pilot. A moment so ordinary, that you wouldn’t give it a second thought. But the last will come.

How many times can you read the same story, kiss that cheek, or converse for hours in a British accent because someone actually wants you to, without wanting to scream, or at the very least, give a good eye roll at the request? These moments feel very long but I assure you, they are actually very short.

The last time I held my sons’ hands or fell asleep in their beds after tucking them in, are two things that I will always remember. Lately, I find my heart asking where those hundreds of tuck-ins and random hugs went. The hours we would spend cozying up in bed playing our own version of Jeopardy or The Food Network’s, Chopped, where we would give each other crazy food lists and then prepare a fake menu using the ingredients, such as peanut butter, scallops lemons and licorice – yum! Back when I was in those moments, I just wanted to read my own book or watch my own show instead of Sponge Bob. Today, I would watch a Sponge Bob marathon if it meant time with my boys.

While some parts of parenthood fade away slowly and you can witness your child’s evolution a little bit each day, there are times where it’s more of a full-on concussion of your memory. A hard-hitting, explosive realization that another semester is done, a new year into teendom approaches and their beautiful souls are unfolding at a blinding speed.

You can’t remember the last time they asked you to take them somewhere and actually stay with you the whole time instead of the shuttle service you’ve become. Or worse, they start asking to drive. You forget the last time they wanted to show you something they created where you both basked in their shining achievement. Now, you’re lucky if they mention they got accepted to college. I kid you not. Just this morning, Cameron was accepted to college and forgot to tell us until the day was half over. Yep – these things happen in the blink of an eye.

Everyone tells you it happens this way and you don’t really heed these warnings because you’re too exhausted and numb from all the damn Sponge Bob or lost sleep to bad dreams of dinosaurs terrorizing their nights. What I wouldn’t give for T-rex-induced all-nighter where I could soothe my babes’ pounding hearts and assure them that it’s all clear under the bed. Now, I find myself soothing their breaking hearts which is a very painful thing.

But what’s more painful as they go through these tricky years discovering who they are and maneuvering so many choices, is that I’ve had to learn the hardest lesson so far: how to watch them make mistakes. How to actively let them learn through their choices, their failures when your every instinct to protect them has you wanting to shout “look out!”.

As kids, I let them learn lessons on their own for the little things that seemed big at the time such as their insistence that they can ride their bikes in the snow or pulling an all-nighter and having to work in the morning. This is how they learn consequence, resilience and to be a little wiser for the bigger choices that await.

When the big stuff goes down though, how do you find a balance between gentle, objective guidance and the knee-jerk reactionary need to control and judge? How do you keep them close and moving forward, while camouflaging yourself as the beacon? It’s the hardest thing ever. Through this murky, messy middle of helping them find a path, I can only hope that I am imperceptibly scattering virtual breadcrumbs to help them get back onto the trail.

I am only equipped with my heart, my intuition and the sage advice of someone who has walked this path as a warrior mama herself. Each step my kids bravely take through the dark, is a step for me, too. It brings us both closer to confidence, to peace and to each other. When he slips backward, I steady the course and when he moves forward, ever so slightly, I extend my hand as a reminder of the soft place where he can land.

While there was the last day when we held hands, I know now that every day has its moments of closeness, if I choose to listen and look for them. If I slow down and take the extra time to be in their world, even if it’s on the sidelines, there is so much to glean. It’s catching a glimpse of his brief smile when something funny happens, or his singing aloud to a song when he thinks I can’t hear. It is in all the ways and all the days where things are ordinary but I can find the extraordinary in them.

I catch my eye-rolls at the 20 requests for a drive someplace. I try to hone my spidey-senses which takes more time, more patience, openness and a fierce commitment to self-check-ins, making sure my ego or agenda isn’t part of our conversations.

And now, I get to do this all over again with an almost six year old where I find myself, mostly, reveling in playing the role of Mrs. Potts from Beauty and The Beast or being Cinderella’s evil stepmother, even when she calls me this at the park in front of strangers (“Push me higher Evil Stepmother!”). I try not to clench my teeth when she won’t go to sleep or needs one more story from when she was a baby.  I still have my own books I want to read and my own shows I stay up way too late watching. But this time, I acknowledge that our beings and needs can coexist. We read RuPaul’s GuRu instead of Love You Forever and recently finished Michelle Obama’s, Becoming. I am mindful of the moments and do the best I can to be present in the chaos, meditating together and learning how our brains work so we understand what we are feeling. Big stuff isn’t so big when you can share it with a six-year-old. It prepares you for the actual big stuff that’s coming.

There will be lots of lasts, that’s for sure. And when they come, honour them with goodness, with closure, and with fondness. Our lasts mark a passage of time, an achievement, growth and the essence of moving through life.

And when in doubt, I just turn to Barry White because my kids are, after all, “My First, My Last, My Everything”.

 

love, actually.

20 years ago, I was 24. I was a blushing bride-to-be, at the very start of my career in marketing. I was adulting, as they say these days. Learning to live as an independent person, contributing positively to society, or at the very least, learning how not to contribute my entire paycheque to the mall that I helped to manage.

A year prior, I had just moved out and taken a huge chance on leaving home, moving an hour away and, as an Italian Catholic Hamilton gal, was now living in sin with my new boyfriend. A Scottish fellow named Rob brought me coffee every day, and roses every week. He taught me how to play baseball and roller-blade when we had just met and he came down with a case of adult chicken pox three days after our first date. I thought he was just ghosting me (a term that I would have used if it had existed), but he informed me of his diagnosis and reluctantly asked me to bring him some groceries as he couldn’t go outside and having just moved to Hamilton, and had no network yet. It was a fast and furious summer of 1997, the hottest on record. We spent evenings going for walks to Dairy Queen, driving around the province on weekends and finding little adventures everywhere we landed. We had a Mazda 323 that carried us to all of our hopes and dreams. We made lifelong friends in our new communities and learned how to take care of another human being other than ourselves. It was the beginning.

We became engaged only four months after we met, and were married a year later at a winery on a mild December evening; we were trendsetters, from day one because now it’s so fashionable to have a vineyard wedding. I always said that I wouldn’t do anything differently if I had to relive my wedding. Same place, same date, same people. And while there are things I wished I had learned about myself earlier on in our marriage, the universe has a way of knowing when we are ready. If given what we want when the timing isn’t right, it wouldn’t have the same outcome. The universe waits to give us what we need, even if that means a painful practice of patience.  

Marriage is tested. Stress tested to see how much pressure it can withstand. Mentally tested to keep you on your toes and actively listening and choosing your words oh so carefully, especially when all you want to do is scream. Marriage is physically tested like a marathon race. The longer you keep moving forward together, the further you go. Marriage is spiritually tested most of all, I think. For our need to see and feel and touch material things within our co-existence (buy that house, bring home flowers, drive those cars, and all the ‘things’ that show the world what’s on the outside of your relationship), it is the spirit of the marriage that burns within. It burns brighter within each of us at different times. If we both have raging fires at the same time, there is combustion. If left to flicker, it will eventually fade to nothing but the smoke of birthday candles blown out too fast. There is a spiritual balance to a marriage. This comes with time, grace, pain and healing. It comes from the soul, the heart, not the brain or mind. So much of what we cannot see is the most important part of a human. The struggle, the joy, the secret, the compassion, the worry, the love.

What I know for sure is that this spirit, this life-giving sense of belonging and believing, is love. Everything stems from it and everything leads to it. In my marriage, we have had enough challenges, strife, anxiety, fear and pain to last a few lifetimes. Yet something always brings us back from the edge. It whispers gently that through love, you will strengthen your love for yourself, for each other and then multiply that love to give to your children. That is how a family is born and nurtured.

Marriage is hard. Marriage is beautiful. It is a testament to the spirit within you and your partner and when that spirit is harnessed, its power brings the strength, brilliance and determination that you need to make it through the harder times. While I often get to tell my story as a patient, people rarely hear the other side of this, the partner’s side. I myself often forget this perspective and allow myself to find space explore what it would be like, to have our roles reversed.

What if my partner was diagnosed with stage 4 metastatic cancer? I would know that deep down, he would likely pass on before me. I would worry about my kids and wanting to ensure that they are okay through it all and that we could go on living afterward. I would feel alone and angry sometimes that the universe is taking him away from me and my kids far too soon. I would be accepting of his needs to vent, to cry, to be scared and to want to live every day to its fullest, together. I would share in the feeling that no one can take the place of a parent to a child and how unfair it all seems sometimes.

I would love him more for battling like a warrior, for not giving up and for insisting on the most normal life possible. I would marvel at his tenacity to somehow do more in a day now than ever before because now, he is doing only the things that matter most. I would join him in finding the extraordinary in the ordinary and I would feed his desire for wanting to accomplish so much more in a condensed amount of time. I would cry with him, hold his tears and give him the safest of places to be real, to just be. I would roll up my sleeves and join him every step of the way in whatever form that needed to take. I would know that while others may think we are crazy, or judge us, or not understand our choices or relationship, that none of that matters. For we have a spirit that guides us, that holds us and that will catch us when we come to that edge. We are each other’s strength to take that leap and know that we will carry each other.

Here is to 20 years together my Baseball Bobbie. Baseball, chicken pox and the mall brought us together. They all require a team, a game plan, a fight and a whole lot of patience. I guess that’s what the universe was trying to tell us; love, actually, is about the spirit of yourself given freely and wholly to another and holding theirs in the palm of your hand, forever. With you always. Xoxo Your girl.

leaving on a jet plane

Peter, Paul and Mary have such a special place in my heart as it was the melody of my childhood. From a toddler to preschooler, sitting on my dad’s lap and signing together, reading Puff the Magic Dragon and finding exhilaration in the idea that there could be a song about that very story!

Dad spent decades as a teacher-librarian and the very best by-product of this was the early love for reading he instilled in me. He also appreciated music so much so, that when he decided to work towards his Bachelor’s degree in the 80s, he did a split major in music and Spanish. I wonder which one was more lyrical as he would speak in such velvety cadences to my mother or around the house as he played classical music and practiced this new language for upcoming exams.

It undoubtedly filled our home with two things: music and books. If we were bored, we were told to read. If we didn’t know the answer to something, we were told to read. And on every holiday or special occasion, our bookshelves made room for The Secret of NIMH, Watership Down and Tiger Eyes so that we were always armed with the ammo of words. Maybe that is why I write or consume so many books to this day. And I’m sure it’s why, when I hear Peter Paul and Mary, Paul Simon or Quartetto Gelato, I think of all the wonderful conversations that must have occurred while I sat on dad’s lap, sat at the table sharing the Saturday comics or sat at the computer sharing notes on my own university music class essays (one of which, I am afraid to say, was heavily borrowed from my dad’s repertoire).

Music has the ability to rock your world in both happiness and triumph, chaos and grief. Just as there is comfort in music, I always found that both music and books could awaken parts of me that I didn’t know existed. From, Are You There God, It’s Me Margaret to Tuesdays With Morrie, to The Kite Runner, there are things you see in books that no movie could ever create so vividly or perfectly in your mind. If words tell the story in our lives, music plays its soundtrack. Every beat has a matched rhythm in our heart and every pause brings space to breathe, to create, to reflect, to consider.

Back to Peter Paul and Mary. I think Leaving on a Jet Plane was always my favourite because it seemed to promise both adventure and the promise of a return or at the very least, seeing one another again, (or maybe it was just about someone’s indiscretions-it was the 70s, after all). If all your bags are packed and you’re ready to go, and you’re standing there outside my door, then you’ve been planning this for a while and want to take care of me because after all, you’d hate to wake me up to say goodbye.

This song recently rocked me to my core as I realized it could be about leaving this world for another place. A place you’re ready for, you’ve been planning the trip for some time and the thing is, leaving isn’t sad. While you don’t know when you’ll be back again, you say:

So kiss me and smile for me

Tell me that you’ll wait for me

Hold me like you’ll never let me go”.

I say, we’ll all have a plane to catch one day and we are going to a sweet place where we will wait. And we will meet again.

Maybe you’ll be one of the five people I meet in heaven and maybe you’ll even be my first phone call. One thing’s for certain, there will be plenty of good things to read while I wait for you and the music will be the sweetest harmony when we meet again. There is no truer harmony sung than the famous 70s trio and whenever there is a parting in your life, may these words be the notes that soothe your heart like a balm as sweet as honey:

“Now, the time has come to leave you, One more time, Let me kiss you, Then close your eyes, I’ll be on my way. Dream about the days to come. When I won’t have to leave alone. About the times, I won’t have to say…

Oh, kiss me and smile for me

Tell me that you’ll wait for me

Hold me like you’ll never let me go

‘Cause I’m leavin’ on a jet plane

Don’t know when I’ll be back again

Oh babe, I hate to go.”

May there be more melodies than silence, more stories than blank pages and more loving, abundance and living above all else.

 

otherwise

Miracles happen everyday. In your alarm that failed one morning that made you miss the horrific accident that you would have otherwise been a part of. In the way that cheque shows up in the mail the day you would otherwise be dead broke. In the baby who made it possible for you to find a lump in your breast that otherwise would have taken you far too soon.

My miracles come in many forms, everyday. Two weeks ago, I received my first round of new treatment that includes an infusion of one drug and 20 pills a day for three weeks at a time. When you are part of a clinical trial, not even your doctor knows if you have the trial drug or the placebo. You pray and hope and wish and everyone who loves you and is rooting for you sends their prayers and energy to the gods and this storms the universe with positivity.

Well, it worked. After six weeks without treatment as I waited for acceptance into the trial, we know that my cancer is so aggressive that all of my 40+ tumours that have mainly taken up residence in my lungs, grew. Some by a centimetre, in six short weeks. You can do the math as to my future with those numbers. But I am a mother. Otherwise, one may throw up her hands and lose her faith to fight, accept her fate and wait.

There is no otherwise for mothers. We have to fight. Because our children are counting on us. Our partners are relying on us and our worlds are better with us in them. We’re motherwise.

Imagine my miracle when, four days after beginning the first round of treatment, all of my symptoms disappeared. No more persistent cough, no more short breaths and no pain down my arm from swollen lymph nodes. Based on this, as well as some side effects and raised blood chemistry levels, my doctor surmised that I do in fact have the trial drug. There is no placebo here, only the good stuff. Otherwise I would be on a crash course with the heavens. Further proof: a blood test for LDH or lactate dehydrogenase, has been reduced by half! LDH is an enzyme involved in energy production that is found in almost all of the body’s cells and helps to detect disease growth. So you see, there is only good news as related to this miraculous, life-saving drug that will hopefully be approved and available in Canada in a few years.

Here’s the catch: the trial drug does a number on your liver. This organ has already sustained some damage from past treatments, including four months on a drug that raised my liver enzymes significantly; turns out, it was never the Keto diet that contributed to that!

The trial drug, called Tucatinib, is ‘an experimental small molecule inhibitor of the growth factor receptor HER2 and is in development for the treatment of cancer. The FDA granted fast track designation in 2016 for HER2-positive breast cancer’. HER2 positive breast cancer occurs in one out of 10 breast cancers.

I have nicknamed the drug Catnip which has skyrocketed my liver into an angry state. My enzymes are the highest ever and is classified as grade III transaminitis which is ‘moderate to severe’ with the next level being ‘severe’ and the final stage classified as ‘fatal’.

I have to let my liver rest for a few weeks before getting back onto the Catnip. When it’s feasible, I will have it again, but at a lower dose, never being able to return to the highest dose I was on. Does this mean my chances of survival are lower? Of course this is what went through my mind.

The Catnip is needed to stop the cancer cells from growing and even may even heal some tumours. Otherwise, the cells will multiply like Gremlins at midnight. The word live is in liver so it could not be any clearer how important it is to let it heal. But time is cancer’s cavalry in this battle. Time makes cancer stronger, smarter, resistant and rebellious. Otherwise, we could take all the time we need to prepare and arm our body against insurgents, giving us the ultimate foothold to win the war.

Without the drugs, there is cancer. With the drugs, there is the potential for liver failure. The worst example of a catch 22. I call it a catch twenty-boo. What do you do?

You trust the science that says a short rest will help. You trust your brilliant oncologist who says he has seen this before at the start of Catnip use and that any amount of it is life-saving so a half dose will be excellent. You trust your sister who is rooted in science and logic and says that it’s all good and that I can finally believe every word this doctor utters. You trust your Personal Support Spatula (PSS for short), Milena,  who offers to have your drinks for you since alcohol is a banned substance. And you trust your soul sister who says ‘you have found the path to healing – continue to trust and believe’. Because, there is no otherwise.