By Amanda Hulton
Diagnosed age 37
Working full time, exercising regularly, lots of socializing, mom of 2 boys ages 7 and 10, 13 years married to my high school sweetheart and cancer!
It was the day after trick or treating with my kids, doing all things a 37-year-old Mom would be doing and that phone call with the words “You have breast cancer”. We all are only one moment away from our lives being forever changed and this was mine.
A year before my own diagnosis my Mom had completed genetic testing and was BRCA2 positive, we have a family history of breast, ovarian and pancreatic cancer. Her and I met with a breast surgeon to discuss her preventative double mastectomy. I remember listening to my Mom's questions, hearing about the procedure and wondering what I would do if it was me. She was nearing 62 and I was 37, would that make a difference? Little did I know at that time I already had cancer and I too would test positive for BRCA2.
Cancer does not care you are a young mom, working, a wife, a sister, a friend, a daughter and healthy otherwise.
My treatment plan included chemotherapy, surgery, radiation, salpingo-oopherectomy and hormone blockers for 10 years. Sounds good right?
I had an aggressive tumor that spread to my lymph nodes and I was going to be starting chemotherapy in 3 weeks. I was set up for 8 rounds every 2 weeks so long as I could handle it. Well, I almost couldn’t, that was the toughest 4 months of my life. I had a picc line, showering was not normal, I slept for days, I was dehydrated, puffy from meds, allergic to the infusions, allergic to the tape, had no hair and was gaining weight and feeling so far from what I felt only one month earlier.
Two of the things I struggled the most with and stressed about in the early days of my diagnosis was losing my hair and how having cancer was going to affect my marriage. In the early days I googled for hours, all day, all night looking up how long before hair grows back, styles for short hair, timelines for re-growth and products to help speed up the process. Chemo day 17… just as I was told I had my head shaved. I still get teary remembering this moment. I now not only felt sick, I looked sick and I didn’t look like the girl I had known for 37 years. Who was this person staring back at me? I got a wig right away; I called her my lifeline. Once I had it, I wore it ALL. THE. TIME. It made me feel confident to leave my house, to have visitors, to go to my kids’ school and sports. I even wore it down a waterslide just so I could live life with my kids.
Coping with Chemo:
♥ Stay hydrated
♥ Eat small meals
♥ Get dressed, put on some makeup on the days you feel well
♥ Ask for meds if you feel sick or unwell
♥ Call if you are worried
♥ Get a wig and one you feel good in
♥ Buy pretty hats, scarves and experience with them
♥ Walk even 5 min on days you can
Marriage… This was also a big concern of mine. I read so many heartbreaking stories and equally as many heartwarming stories. I wondered where we would fall. My husband stepped up, he was now a single parent, working full time, full time caregiver, cleaner, chef and everything else. He ROCKED it. I have so much respect for him and that he too was going through his own worries and unknowns and continued to keep us afloat. We are going to be married 14 years this month and I look at him with so much love, my heart could burst. I wish I hadn’t wasted so many hours worrying and had a little faith.
With being BRCA2 positive I was scheduled for a double mastectomy and felt it was the only option. What was troubling was my decision to have reconstruction, this was one decision I had to own. I was not supported by my radiation oncologist to have implants; this created a lot of tears and fears. However, my heart of hearts was that I wanted to wake up from surgery with breasts. I needed this, this was for me and my overall wellbeing. I considered all options and being that I would require radiation did not take this decision lightly. I went ahead with implants over the muscle and am proud of myself for standing my ground on what I wanted and in this case, needed.
Recovery from a double mastectomy looked like this:
♥ Sleeping in a recliner for 3 plus weeks,
♥ Never missing the next dose of pain killers,
♥ Adjusting to 5 drains hanging from my body for 2 weeks,
♥ Scars across each of my breasts,
♥ Watching for bruising
♥ Arm reach being no more then inches from my body
♥ Post-surgery exercises
I healed well and was off pain killers within 10 days. I transitioned to my bed around week 4, sleeping on a wedge to keep me upright and pillows among pillows.
It felt like I barely recovered from one treatment and was prepping for the next. My pathology showed 3 of 11 lymph nodes positive and my oncologist was now starting me on tamoxifen and zoladex immediately. I was getting ready for radiation; I would have 25 rounds. I wore a bolus for the last part of each treatment, this helped the radiation be closer to the top of my skin which would cause more burns. I also was being radiated on my left side and so I had to hold my breath putting space between the radiation and my heart. I almost got through all 25 rounds with very little reaction, but on day 25 my skin started to break, I was not prepared for the next 3 weeks as the burns got worse every day. I peeled from the top of my armpit across my breast and underneath. I got an infection that had to be treated. I didn’t feel supported through this time, no doctor visits, no one looking at my skin, just me trying to play nurse with a burnt body. It was summer and I missed out on pools, lakes, swimming and stayed indoors to stay cool and avoid the sun. Again, mentally it was just as tough as it was physically.
Coping with Radiation:
♥ Buy non adhesive cloths to cover when skin breaks, will help peeling and sticking to clothes.
♥ After showering leave affected area under arm wet, this will allow you to get dressed with it being a bit slippery and not sticking.
♥ Air it out as much as you possible can.
♥ Use polysporin plus pain when skin breaks to help prevent infection and reduce pain.
♥ Moisturize constantly, all throughout treatment and do both breasts this will help reduce scars.
♥ Avoid sun.
♥ Advil helped with inflammation and pain.
♥ Where t-shirts that are snug and create a barrier between your arm and body.
♥ Drink lots of water.
So, here’s where things change. I am all done chemotherapy, surgery, reconstruction, radiation and am 4 months into hormone blockers and ovary suppression. I am struggling, I feel shocked what just happened. Emotionally and mentally I am having a hard time. Why? When I should be celebrating, I am done treatment. But I wasn’t I didn’t know how to feel and was re-playing the last 10 months over and over in my head. I started to see a social worker who helped me navigate these feelings and once she labelled them as grief, the loss of my previous life, the changes to my body and mind. I started to recognize that was exactly what I was experiencing. I continued seeking support for 6 months. I worked through a lot of feelings, it felt like I just woke up to realizing I had cancer and what I experienced. I slowly am still working on this; I am prioritizing self-care and it looks like this:
I was a fairly private person most of my life and once I knew I had cancer I started to open up a bit more. It was hard to say the words “I have breast cancer”. Managing all the reactions, tears, fears and “you will be fine’s” was a challenge. As time went on, I did create a private group on social media where I would post updates, it was an online journal and served me well. I look back somedays and am starting to not recognize that girl who lived in a world of unknowns. I was supported by colleagues, friends and family and that felt good. It was close to my one-year anniversary before I made it Facebook official with what I had been going through. It was freeing, I felt a weight off my shoulders. I didn’t need to be embarrassed or ashamed of my diagnosis. I was fighting for my life.
During this time, I had a salpingo-oopherectomy (tubes and ovaries removed). I was immediately into surgical menopause. SOOO HOT! I am finding this difficult even 6 months into it, finding ways to cope with a 39-year-old that feels 90. I have always been one to find ways to continue living, I don’t want to be defined by cancer and so I got a portable battery-operated fan, I have stopped drinking alcohol and with intermittent fasting find I have lessened these side effects.
Coping with menopause:
♥ Personal fan
♥ Limit or avoid alcohol and caffeine
♥ Regular sleep
♥ Dress in layers
♥ Mild anti-depressant for night sweats and sleeping
♥ Keep hydrated
♥ Short walks
I am now back working full time, managing the fatigue by taking regular breaks and not over scheduling my days off. Being okay with an untidy house somedays and choosing making memories as often as I can. On my 39th birthday I decided I was ready to help others; I launched my blog BreastCancerBeyond.com. I want to share the “real” story and inspire other women who are diagnosed. I have a whole new perspective, I see things I never saw before, I hear things I never heard before and I am looking at a world I didn’t know existed.
I am proud of my journey; of my soul and the way I chose positivity. We control our minds it is not the other way around.
A day in the life of a survivor is still new to me, I sometimes take a double take at my scars and am proud of my body for fighting along with me. I am embracing the new hair, being playful with my looks and appreciating every strand. I worry about unknowns and my kids and husband, and so I don’t sit on the beach watching them swim. Get in the water, swim, splash and laugh. All we have are memories, remember we are all only one moment away from our lives being forever changed. We are stronger together.
Be kind to yourself, you are doing the absolute best you can in this very moment.