reena & ashley : part one
I have always been shy when it comes to social media. I was the last of my friends to join Facebook and don't have anything posted. I cautiously joined Instagram, making sure everything was set to private. But when I began kisii, I knew I needed to push myself to be more open, to share my work and my words since I was trying to do something that required support - fundraising. At first, I didn't think anyone would really be interested, nor did I know anyone else who was using craft to explore healing. Desmoid tumours are rare enough as it is, so I never expected to find an International community of amazing people who were all going through the exact same experience as me! And I found them on instagram, starting with Ashley.
Ashley is one of those special people who manages to share her experiences in the most endearing way, by stating the how's and what's and even asks the why's, so that we all are left with something to think about. She's genuine, spiritual, kind, hilarious, extremely strong, thoughtful and has become a really good friend. She lives in sunny, Southern Florida and is a Licensed Clinical Social Worker passionate about helping people rebuild after trauma. She's taught me so much and I'm really lucky to have her in my life.
I had the honour of asking her a few questions about her journey with cancer.
Ashley and her beautiful little Bo
1. I'm going to jump right into it. Beyond the five people I met during chemo, I didn't know anyone else with my condition. Even trying to google the diagnosis came up with very few results. Thanks to Instagram, I eventually discovered you! I felt so comforted knowing you were asking the same questions and I was also really inspired by your openness to discuss your experiences. What made you start chemo diaries?
My Chemo Diaries began as a personal journal when starting my second round of chemo. During the first two years of my diagnosis, I didn’t document a single thing. I was in shock, and chemo was a memory I wanted to forget. Sadly, when preparing for my second round of chemo, I had nothing to look back on to remind me of the experience. So, I began my chemo diaries as a legacy piece for myself.
Ashley's first journal, every appointment documented by her Mom
2. Identity for me was/is something I struggle with. Suddenly (with only good intentions), you're associated with this "thing". It wasn't a part of your life and now it's so very present. It's hard to understand if you haven't been through it, but is affects all your actions and decisions in life. Accepting that you have/had "an illness" takes time to process. How has this whole "thing" impacted your identity? I know you're stronger, and we're all continually growing regardless of our circumstances, but who is Ashley today compared to who she used to be?
This is a very difficult question! First, how did this impact my identity. My sense and view of myself has been on a rollercoaster for 5 years. I ruminate constantly on different phrases. First, acceptance of my condition caused me to identify as “sick”. But being a desmoid patient and having a “not-cancer, cancer” I then struggled with “I’m sick, but not too sick”. This led to a deep desire to not act victimized, which caused me to identify as an “overcomer”. But, you know, chemo makes you tired, so I then began to identify as “weak”. Then, you find out your tumor is stable, and you’re no longer “sick”. The hardest identity shift has been from “sick” to “well”. - Second- who is Ashley today? Honestly, I’m a recovering mess. More than anything, cancer forces you to take a real look at yourself and you’re character. It forces you to answer the question, “What am I made of?” I’ve spent years wrestling with the “Why’s” of my diagnosis. I’ve distracted myself, I’ve numbed myself, I’ve lost myself. Yes, I’m stronger, today. Yes, I’m growing. But more than anything, I think I’m still rebuilding. I’m striving to rebuild as an authentic, grateful, and respectable woman who always makes loving people her first priority. I can’t say cancer “took” those qualities from me. Cancer didn’t take anything from me. All cancer did was expose qualities in myself that I needed to confront. So that’s what I’ve been trying to do.
So much strength!
3. We need to celebrate the fact that you're in "remission". I don't even know if that's the right or appropriate word. What does remission mean to you? How have you learned to balance "regular life"
Ah! Remission is a hard word. It’s actually a word I try to stay away from. While I’ve been chemo-free for a year, my reality is that my tumor is incurable. The idea of remission feels dangerous, because I feel I need to always be prepared for my next round of chemo. “Regular Life”- It’s been a year, and I’m not sure how to define “regular life”. My life is no longer regular. I think my current lesson is to recognize when I’m allowing my diagnosis to hold me back, and challenging my excuses and fears.
Ashley with her parents, after she found out that she was able to have her port removed.
4. I think we're in an important time right now where people are starting to talk about the need for research (specifically for orphan diseases). As far as I know, the current best option is a renal cancer drug that is still in a trial phase. I feel something between hopeful and frustratated when I think of how far we've come in ten years. What would you like to see in terms of options for us Desmoid patients?
I am very fortunate that chemo has stabilized my desmoid- but I know several people who have suffered greatly from this diagnosis. There are 2 things I’d like to see.
1. Doctor education. It’s very scary to have an oncologist walk in with a research
article in hand, and say “I’ve never heard of what you have, but this article says we should do x”. (True story)
2. There are so many different opinions on the best way to treat a desmoid - surgery/no surgery; chemo or radiation; HIFU or Cryoblation. Today? The “best” option is “wait and see”. I would like to see a standard protocol for how to approach treatment. Obviously different people respond to different treatments, but there seems to be no standard.
(no caption needed).
5. Aside from the chemo, what has helped you heal?
Chemo helped me heal physically. Emotionally, the main thing that has helped is time. I wish there was a better answer than this- one that allows us to take action- but time is it.
6. The reality is that chemo attacks both the healthy and unhealthy cells in our body, which impacts everything else - organ function, digestion, immune and lymphatic system (to name a few) along with increased levels of stress. One thing I've learned is that my body is unique. It doesn't respond to things the same way as the person next to me, whether it's a relative or another chemo patient. Genetically there are some things we are predisposed to, but still, my environment, mental and emotional stress, diet, lifestyle and medications are unique. Through all of that, I'm learning how to better take care of my body. What have you learned about your body through this experience?
Oh girl. This has been the hardest struggle for me. My body is completely different after chemo, and I haven’t quite achieved the mindset of “loving” my body for how hard it fought. But I have learned a lot. Our bodies are resilient. Our bodies want to heal. For myself, my body holds a lot of trauma, and I’ve actively worked to heal through therapy, EMDR, and yoga. I’ve also had to learn how to read even the smallest cues - for example - the smallest amount of salt will cause my leg to swell to a point of inhibiting mobility. Cashews will now cause an allergic reaction similar to my reaction to chemo. Etc etc.
7. I've read that naming something helps you understand it. In Canada, Desmoids are not yet considered "cancer" although they are categorized as sarcomas. In the States, the condition is viewed differently by the world of cancer care through conferences, other patients and even oncologists. I'm personally very interested in the language used around cancer in general. What do you think of the word "benign".
The inherent definition of benign vs. malignant doesn’t bother me- rather, it’s the value people ascribe to these words that become hurtful. People view benign as less important and less serious. This creates the perception that desmoid patients should be “thankful” and if you aren’t- if you’re affected- then you are being “dramatic” or being a “victim”. - Personally, I call my desmoid “cancer” - not because I want cancer - but because it’s the only way people understand the seriousness of my condition. My desmoid is locally very aggressive, and if not treated like cancer, can be life or leg threatening. Thank you to the ACS and WHO for including us in the “cancer” category.
Ashley will be hosting a workshop at this year's Cancer Con Conference in Seattle
8. You recently started a new job! In fact, you just finished your training! Yay! We've discussed the ups and downs of having to "start again". It's an interesting experience when you have an invisible disability and a major health history. Sometimes there's even discrimination in hiring practices for people with chronic illness. How does it feel to step forward into a new job? What unique challenges are you faced with?
Scary! I’m stepping into a new industry, and prior to starting this job, my close friend advised me to cover my port scar and never mention cancer. If I did, she assured me I’d be the first person fired if the company falls on tough times. In the US, we are required to acknowledge if we’ve had a previous cancer diagnosis, because we are considered a “protected class”. Girl! That form makes me sweat! That’s the time I choose to say a desmoid is “not cancer” - because I fear the potential repercussions. But as a side note, I’ve only had extremely positive experiences when it comes to work and cancer.
9. Speaking of employers, should we rant about the cost of cancer treatment? Do you think people need to hear us complain about how much it costs to have chemo? I'm going for it. I'm a teacher in a first world country with "free healthcare" and an excellent insurance plan. However, my oral chemo wasn't approved for coverage. It costs $7,000/month for this trial drug. If you have a mortgage, student debt, reside in an expensive city, it can be difficult to make ends meet. Fortunately for me, I was approved for a compassionate drug program through my hospital, and my chemo is free. But I've had to learn a lot of tough lessons along the way (for example: nobody told me that I would spend close to $5000 in hospital parking over the course of ten years). When a young adult is diagnosed, how important do you think it is to inform them of the anticipated costs of this new financial reality?
I wish I had been offered a financial advisor - even if it was just one meeting! Cancer is very expensive, but I must admit, I have been fortunate in this area. My last chemo drug was $16,000/mo and I was given the dosages for free because of a scholarship. My health insurance covered all expenses except a $2,400 deductible/yr and a $700/yr premium. Sure, that’s $3,000/yr on healthcare- but I am ok paying my doctors who have treated me well.
Ashley pondering about medical bills, credit scores and the time it takes to wait on hold.
10. We have a shared love of the ocean. My special place is the rugged Pacific Coast in Tofino, British Columbia. I always feel more calm when I'm near the water. You recently decided to learn to sail! I'm a big advocate for learning new things at any stage of life. What does being near the ocean bring into your life?
I don't know what it is specifically! The ocean is my healing place - it brings catharsis. I may have to think about this more :)
11. Now that you've lived through it, what advice would you give your younger self, when you were first diagnosed, to help move forward?
One of my doctors shared something with me during my second chemo appointment in 2015. Her words were so timely and I have repeated them to myself often over the years. She said, “Ashley, I know this is hard and it seems so big, but in the story of your life, this is just a small blip on the screen.” - in other words, “Keep hope. Things will get better.” I’d also tell myself “You can do hard things.” - “Be kind to yourself, there is no ‘right’ way to handle cancer” - “Let the tears flow, it’s ok to grieve.”
12. Let's end on a hopeful note. You have been an inspiration and source of strength for me. I see you trying hard and it lifts my spirits. Where do you seek inspiration from?
I’m motivated by two things: life and people. We only have one life, and I want an amazing one - jam-packed with meaningful experiences and adventures. Even though cancer is brutal, it is still that - a meaningful experience and an adventure. I’m also highly motivated by people. I want everyone to love their one life, and if there is anything I can do to inspire hope or help people get there, that is all I want to do.
13. Do you have any questions for me?
These were amazing, thoughtful, and relevant questions. What led you to these specific ones?
As you so eloquently said, this is part of our adventure and I'm searching for answers to questions that sometimes keep me up at night. To say them outloud and ask someone who has been down the same road is really helpful. It's an isolating experience at times, but it's been positive and therapeutic to connect with you and other patients who have now become friends. But we have lots of work to do, there's a lot more to our story that needs to be shared, so that's what I'm working towards with kisii and now with The Cactus Flower Journals - a space for us to think and talk about these things. I feel like it's our duty to shed light on this and help raise awareness through our shared experiences. Hopefully we can help others going through similar challenges, clarify some of the stigmas, advocate for clear professional standards, raise awareness by rethinking the language used in the medical world (and beyond) that relates to us, connect organizations and people to ultimately help support other patients. The Desmoid Foundation of Canada has helped me tremendously, so I try to give back to them and my hospital, Princess Margaret Cancer Centre. I have so many more ideas to explore and questions to ask, so get ready for part two! :)
Thank you for taking the time to answer all these questions, Ashley!
What started out as 7 questions almost doubled! I'm honoured to share them here, especially on #WorldCancerDay. Thanks again! Love you!
If you'd like to follow along on Ashley's adventures you can find her here: