A little bit about you:
Name: Amber Pywell
City: Duncan, BC
What was your diagnosis? Papillary thyroid cancer with follicular variant. Metastasized to lymph nodes.
What year was it? 2015
What was your age at the time? 34
What is something you’ve done that you’re really proud of?
My life. All that I have done, all that has been accomplished, those I have helped along the way, and learning to finally accept help and to see it as a gift, instead of a weakness.
What is a top item on your life to do list?
To live life.
I have made it this far with no regrets, and plan to continue. This doesn’t mean that I haven’t made mistakes and some epically bad decisions, but what it does mean is that I have chosen to learn from them. Some days I definitely dwell on the bad and the negative, but when I’ve finished the last piece of cake at my pity party, I get on with life. I evaluate what has happened, what my choices were, and where I can grow and learn from them. I also insist on doing things that scare me. I jump in with both feet and figure out the rest later.
What are your hobbies?
I love shopping, painting/crafting, sewing, comedy, and travel!
What was your life like before your diagnosis?
Before I was diagnosed, I was unstoppable! I was married to my husband for 14 years, I had three kids, and I was a powerhouse at work. I could multitask like no ones business, juggling many hats without ever missing anything. My energy seemed never ending, and when energy failed me, sheer determination and stubbornness always saw me through the toughest times.
How did you find out you were sick? What led to your diagnosis?
After the birth of my first daughter in 2007, I was visiting my mom. We were playing cards with all my siblings and I happened to reach up and stroke my neck (no doubt, because I had a wicked hand of cards!) and felt a large lump in my neck. I mentioned it to my mom, asking her if this was “normal”? She made me promise to go to the doctor when I got home. When I flew home, I went in to see my GP. He sent me for blood work, and it indicated my thyroid was not working properly, which he said was common after having a baby. I went on medication for a couple of months, went off for a couple of months, retested blood work, and was deemed to be in perfect health and told to come back if it became bothersome.
Fast forward eight years. I went into work one day and was cursing and complaining that it felt like something had been stuck in my throat. I was burping a lot because I kept swallowing, trying to clear this imaginary thing stuck in my throat. I had this sensation in years past, but only for a day or two, so on the Saturday after it had been bugging me, I had a good feel of my lump. I had felt it many times in past, but never really put pressure, or explored it in it’s entirety. When I felt all around it, I noticed the shape had changed, and was considerably larger than it had ever been. After a week of discomfort, and feeling how large it had gotten, I made plans to see my GP on Monday.
It was a different doctor doing a locum for my regular GP, and she instantly sent me for blood work, and a requisition to have an ultrasound. My blood work came back absolutely perfect (which stunned the doctor, and me), but the ultrasound was alarming. I was quickly scheduled in to see an Endocrinologist in Victoria, and within a few days, had a fine needle aspiration done. A week later, we had our diagnosis.
What were your first thoughts when diagnosed?
I was never a journal writer, until the day I was diagnosed. That day I started. This is taken straight from my journal from the day I was diagnosed:
Cancer – Day 1 – July 3
Well, ain’t that some shit! I started my day with lovely plans for a relaxing day with my children, until I got the call. The call from the specialist telling me my results were in, and they could fit me in at noon. I knew right then it would be bad. To be honest, I knew before that. When my mother kept telling me it’s not cancer, I knew. When I was told to be positive, I remained positive in the outcome, but I knew what it was. I prepared myself, I prepared those closest to me. Perhaps I have been preparing for years. When you get news like this you start questioning diagnoses, and time that you once thought entitled to, you are now using to plan your final goodbyes and how to prepare life post-Mommy.
In the doctor’s office, the normally chilly receptionist is unusually chipper and pleasant. After a simple comment from me, she stops what she is doing and engages in a conversation — and smiles! FUCK, this can’t be good. Sitting in the office. In and out in 15 minutes. Hold it together, do NOT cry, you are bigger than this, you are better than this. Hold. Your. Shit. Together!
I leave the office and come out to the receptionist, and she looks on the verge of tears. I try my best to thank her. To thank her for going out of her way to check my results and call to get me in, because she knew I didn’t want to wait another weekend. I truly was grateful, however, lord help me if I end up crying in front of her. I barely got to my car and it started to unravel, and the emotion floods from my eyes.
I had my good friend Laura came over with kids to play; it helped the day feel “normal,” thank God for that. I had wanted to wait to tell people until my husband got home. I didn’t want to interrupt his day at work for fear he would not be focused and hurt himself. Well there’s a conversation I never thought I’d have, having to tell my husband, the love of my life, my life partner (for however long that is), that I have been diagnosed with this unseen, hidden little evil, living inside of me. Hearing him say “we’ll get through this together” was so comforting to hear, and at the same time, I was filled with guilt for breaking his heart.
How weird. I was looking at myself in the mirror saying “I have cancer,” “Hello, my name is Amber, I have thyroid cancer,” “I was diagnosed with cancer.” None of these seemed to hit home, and it all still felt surreal. When I made my calls to close family and friends, I felt as though I was lying to them. And then, something I never thought I would have to think. Tonight, I had to tell my daughters that I have cancer.
Wow. That’s tough. How honest should you be? Do you tell them how unbelievably scared you are? Do you tell them the real possibilities or outcomes? Do you grab them and hold them tight and insist that they sleep wrapped in your arms because you are scared you won’t see their next birthday? Of course not; grow up you giant baby! Suck it up, and do what you do best. Love your daughters and set them up for success. A fine mix of truth, positivity, love, and openness.
So I sit my girls down in their room and jump right in. We have had people we know affected by cancer, so the idea of cancer wasn’t a new one for them. I asked them what they remembered about our past talks, and their recall wasn’t great, but enough to know that the “C” word is something we talk about, not something to immediately fear and keep quiet.
I explained that my doctors did tests and told Mommy that she has cancer. Initial acceptance, and the odd question. I showed them where the cancer was and let them touch it. I explained it wasn’t a bad kind, and they will cut it out. I explained that I had my appendix out when I was 12, as it seemed to scare them the idea of Mom being cut open. I showed them my scar and allowed them to touch it, to connect their thoughts with feelings with reality. As I laid them each to bed, they had their final questions. Hannah says to me, “I don’t like cancer, it makes me angry! I am so angry I just want to punch the cancer and make it go away!”. Oh Hannah, me too!
She gets out her coloring pad and quickly draws a circle for a head, feverishly scratches out some hair, eyes with beautiful lashes, and a long neck. She then proceeds to draw a half circle, the shape of a “C” right in the middle of the neck, but off to the right — how anatomically correct of her! She tells me she has drawn me, and my cancer, and proceeds to draw a huge smile on my face, because I am so full of love. YES! I have succeeded. If nothing else, she gets it, love through it all.
One last question: “Mommy, if you hug or touch someone with cancer, can you get the cancer?” Oh my sweet dear daughter, absolutely not, you can love me and hug me and cuddle me and touch me all you want, and you will not get cancer!
So the end of my first day. I have felt everything. I feel like I have lied to everyone I know, that this thing is not real, that it is not happening. This is exhausting. I am so emotionally spent, physically spent, completely used up. I want to collapse into bed, yet worried I will never get this night back to snuggle with my husband in the quiet wake of three sleeping children.
My name is Amber Pywell, and I am a future cancer survivor!
In which hospital were you treated?
My surgery and radioactive iodine treatment were at Royal Jubilee Hospital in Victoria, BC.
What did your treatment consist of?
Before surgery, I saw naturopaths and tried to get my body in as best shape/balance as possible before undergoing surgery. I cut out bad foods, used a hyperbaric oxygen chamber, added vitamins and minerals, and tried to give my body the best chance possible.
I had a total thyroidectomy. Anesthesia always seems to take it’s toll on me, and this was no different. I spent the rest of the day after surgery in and out of sleep. I could barely open my eyes, but I could hear everything going on around me. Trying to eat ice chips felt like swallowing shards of glass. A couple days after surgery my calcium started diving, and they ended up keeping me in the hospital for a few days extra. My drain came out after two days, and man did that feel gross getting pulled out! YUCK!
Once I got home, I really struggled with the toll it took on my body. I really had to work myself up to have the energy to shower, and afterwards, needed to take a nap! My body did not respond well to a lack of thyroid, and I found myself suddenly thrown into bouts of anxiety and depression, neither of which I had ever struggled with before. Some days I could feel my energy returning, and glimpses of who I used to be, but they were few and far between. For a couple months it was like riding a wave. I would have a day of feeling almost like my old self, and then I would come crashing down. The down days seemed infinite, but slowly over time, the ups became more common than the downs. I felt ashamed when I first admitted that I was struggling with anxiety and depression, and then I was pissed off that society had sneakily put that preconceived notion of shame upon me. So when I get pissed off, I fight back. I told everyone and anyone that asked, exactly how I was doing, the good and the bad.
Two-and-a-half months later, I went back to the hospital and drank my radioactive iodine and stayed in isolation for three days. I watched TV, listened to music, and shook my ass in front of the large windows of my private room on the top floor. I just pretended I was like a superstar, hiding out from the paparazzi after I suffered a mental breakdown from sheer exhaustion of being so dang awesome! I managed to pass the radioactiveness through my system quickly; the radiologist was super impressed. That’s just how I roll, I guess.
After they let me out of the hospital, I went to Ucluelet and stayed in a cabin for a week. I had small children at home, and my two-and-a-half year old was still climbing in bed with us in the middle of the night. I didn’t want to risk their health, so I took extra precautions. Sitting on the beaches watching storms roll in and out was so awesome for my soul. It was a great way to allow myself to move forward. Sometimes we get so stuck in a cancer frame of mind, we almost fear having it gone because then we have to find out who we are post cancer. So I wrote in the sand, “Goodbye Cancer” and let the waves wash it away. Super hippy and therapeutic! (I’ll leave out the part where we danced barefoot in the rain at night.)
What is your current medical status?
Currently, I am sitting in the champagne room of cancer. Will that sexy beast called “NED” give me a happy ending, or will I get a lap dance from her ugly cousin, “recurrence”?
Unfortunately for me, I couldn’t even afford the champagne room, so I’m stuck with “indeterminate.” After surgery, they found that I had thyroid autoimmune disease. With my thyroglobulin antibodies through the roof, I can not get an all clear. Without a clear blood test, I will not get NED. I will go for my ultrasound in December, as well as my Thyrogen injections and whole body scan. But all of this is merely numbers and odds. Until then, I continue living life, and focus on the positive.
Life after cancer:
How is life different for you now post diagnosis?
The biggest change is physically, I just don’t have the energy to do what I used to, but I’m getting there and refuse to give up until I am back to “normal.” Spiritually I am just as strong and connected as I was prior to diagnosis, if nothing else, I have a greater appreciation for my peace when I see others struggle with their own mortality.
What is the toughest part about having cancer as a young adult?
Facing your own mortality. Everyone knows that they will die one day, but we all ignorantly assume it will be when we are old and grey. The day I was diagnosed, I drove home, scared to death that I would crash and not get to see my family one last time. It hit me, all of a sudden, that time I once felt entitled to was up in the air. While all my other young mom friends were worrying about signing their kids up for extracurricular activities and planning their mundane tasks, I was writing my will, planning for surgery and treatment, and budgeting our household minus one breadwinner.
What really helps you to keep going?
Patience with myself mostly. When the really bad days hit me, I allow them to wash over me, dragging me down to the darkest places in my soul, and when my energy allows it, I claw my way back into the light. When I start feeling really out of control, I focus on things I can control, changing things in my home, hair and makeup, tattoos, you name it. It refocuses my thoughts onto something positive, and then I am able to redirect all my energy into something productive.
What kept you busy during treatment?
With three kids, I didn’t need much to keep me busy while I waited for surgery and treatment. I did try out paint nights, which I found to be quite therapeutic. I also went out to a couple comedy nights. I just tried to surround myself with things I loved and enjoyed.
How are you connected with Young Adult Cancer Canada? How did it happen?
I stumbled across YACC before I was diagnosed when I was in my Google frenzy. I made a mental note as it seemed to strike a chord with me. After I was officially diagnosed, I reached out to be in contact with a couple of ladies with the same diagnosis. After surgery and treatment, I attended Retreat Yourself BC and Survivor Conference — amazing opportunities that I almost cancelled, but I’m so glad I didn’t!
Do you feel isolated from your peers since your diagnosis?
I didn’t initially have feelings of isolation after diagnosis. I feel like I have lived my life collecting beautiful souls to have around me, so when I was diagnosed, I announced it with dignity and grace. For the most part, I was surrounded by love and support. I had some people close to me that mentally could not handle the emotion and fear that it brought up in them, which caused them to pull away slightly. This was not my fault, nor was it theirs. Some people just don’t have the wicked tool kit like I do. They were there for me in the ways they could be, and I knew it was all they had, so there were no hard feelings.
After attending my first YACC retreat, I did realize the difference between sharing your stories with other young adult cancer peeps, and sharing it with everyone else. At the retreat, I came to see that I had been missing that connection. Though I had a lot of support, love, and understanding from almost everyone in my life, no one in my life had cancer. No one in my life had cancer at 34, while being married, with three children. I was at peace with my life, but at the retreat it was — life changing. I felt things, lots of things, in great abundance and in frickin’ technicolor!
Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
Nope! Although, after diagnosis, and finding everything out, it sure made sense as to why it took four years for my husband and I to have our first successful pregnancy and miscarriages between each child. We had decided one year before I was diagnosed that my husband would get snipped. I figured if I birthed three LARGE babies, that he could take one for the team!
If you have children, how has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
The first few weeks, I was a freakin’ superstar! I had a superhuman amount of patience. I stared at them, adoring them, loving them, drinking in every bit of them. When I was first diagnosed, we didn’t know anything — if it had spread, how bad it was — so every day I lived with my kids like it could be my last. For a few weeks at least, then exhaustion sunk in. Days wore on, and patience grew thin. I feel like my husband and I were always really awesome parents, so for a few weeks, I was Mother fucking Theresa, and then slowly returned to plain old awesome.
Life after surgery, and living without a thyroid, has changed my parenting more than anything. The exhaustion and brain fog allow the kids to tag team me and get away with way more than they used to. My patience runs thin, I find myself very sensitive to sounds, and I definitely lose my cool more than I would like to. I am slowly getting better, and as my energy and clarity returns, so does the mom I used to be.
Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
Most people in my life have been awesome, and some have unexpectedly stepped up, and stepped into my life, more than they ever have. I have lived my life always trying to be true to myself, and through some tough times, I have learned to distance myself from those that impede my growth in this lifetime.
There is however, one part of our extended family that greatly disappointed me. It took me a while to not take it personally, and to be honest, some days it’s still hard. I am fully aware that they have stepped in as much as they are able, but a lifetime of ignoring mental health and serious life issues has left them unable to cope in a way that would allow them to be supportive to anyone other than themselves. I am most frustrated that this affects my husband, and leaves his support system at nil. It makes me sad to see him stepping up to help me so much, and have no one in his life to take care of him. In the hopes of finding support for my husband, I have asked him for a sister wife a few times, but he has declined, reminding me lovingly that I am all he can handle! Fair enough.
How has your cancer experience affected your body image, and your relationship to your body?
Initially, I changed my eating and consumption, resulting in a few pounds lost. I felt great, considering. Once surgery was done and RAI was complete, I started eating. Having to go on a low iodine diet for a few weeks prior to RAI left me craving all sorts of bad things. At first it started out as a little celebration, and soon it went straight to my ass. I gained a good 20 pounds and have only recently taken back my life and started losing weight. I have always been an emotional eater, I ate when I was happy, sad, mad, scared, celebrating, mourning — you name it, I ate it!
As far as my scar, though, hell yeah, I wear it proudly! I am not one to be embarrassed of my scar. I love my scar. I knew there was a good chance mine would be keloid because I have had stretch marks from growing too fast my entire life, and a body full of scars from small scratches and accidents. I know some people really struggle with it, but not me. Sometimes I joke about the bear I fought off that tried to attack my son, or I tell people it was a shaving accident. I do know though that this a real concern for some people, and that if it changes the way you view your body, it deserves your time and attention to talk to someone and work through what you’re feeling. Everyone is different, and there is no right or wrong way to do cancer.
What are some lifestyle changes you’ve made since your diagnosis?
I have recently gone back to Weight Watchers. I have done it before cancer and lost almost 50 pounds, so I knew this method worked for me. Everyone is different, and I would encourage everyone to find something that works for them. I have also started trying to become more active. Lack of energy only compounds a deteriorating body, so I have to start somewhere! Also, when I go back to my endocrinologist in December, I don’t want him to have any excuse as to why I’m not back to “normal.” That way, he will have no choice but to explore other causes and options! I’ll show him!
Resources and recommendations:
What would you add to a treatment-day playlist?
Which books/movies/podcasts/TV shows/etc. would you recommend?
I watched Schitt’s Creek after surgery while in the hospital, watched the entire season in a couple of days. So funny!
What are your favourite blogs and websites for passing the time?
Facebook and Instagram were my vice. And Google Scholar.
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
I have been to Retreat Yourself BC and the 2016 Survivor Conference. There isn’t much else for thyroid cancer people, not around here!
Are there any other resources you’d like to recommend?
Reach out to people who have walked a mile in your shoes. I was reluctant at first, but now I can’t get enough. I love talking to fellow thyca and YACCers!
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
You are not alone, you don’t need to do this alone. Reach out to someone, anyone. Allow others to help you when offered, and learn to ask for help when you need it. Try not to get mad when people say or do the wrong thing, people are stupid! Allow yourself time to work through all that cancer has to throw at you. Whatever you are thinking or feeling, you aren’t the first one, you aren’t the only one, and you won’t be the last one.
And lastly, it’s never too late to start living life the way you always wanted to!
Are you interested in helping others facing cancer challenges?
Abso-frickin-lutely! (If you would like to get in touch with Amber, please email email@example.com and we’ll happily pass along a message.)