Sarah D: journey to now
For the past decade, Sarah has been navigating a steady flow of difficult life lessons; a journey fraught with dangerous undercurrents and narrow passageways. For some, such troubled waters would be impassable. For others, the toll would be upended faith. For Sarah, an unyielding light of hope and optimism propelled her forward to a new shore. There she found shelter in deepened wisdom, and the mighty force of abiding love.
It was 2013 when, amid a divorce and some obscure health issues, 37-year-old Sarah was diagnosed with multiple sclerosis (MS). A career woman and single mother of seven-year-old twins – Sarah was deflated but by no means defeated. She had persevered through several rough patches before; she summoned her brave face, set her sights on the level horizon, and kept going.
“I totally believe things in life happen for a reason,” said Sarah. “However, I don’t believe we should just sit back and resign ourselves … I think we can steer them.”
It was 2017 and Sarah’s sole mission was to steer her little family toward the best life possible. She had a good job for the Department of National Defence, she was managing her illness, she was in a new relationship, and she was following through with her two-year plan to fix-up her home, sell it and move forward.
Then the tsunami. Sarah was called to come to Calgary for a neurology appointment to discuss results of a recent MRI. Assuming it would be a routine update, she went into the appointment alone.
“When I sat down, my doctor started talking about glioma and possibly astrocytoma … these are words for brain tumour. I said, “I think you’ve got the wrong patient – that’s not me.” He double checked the name on the file and said, “no, I’m sorry, it’s you”,” she said.
Blindsided by the news, Sarah’s shock sent her to the safe island of denial.
“I had this experience that felt like I was disassociated from myself. I was sitting there in the chair but not really feeling myself. The professional me was asking questions … “What does this mean? What do I need to do to get through this?”” she said.
When Sarah met up with her partner, Mike, at the elevator, he asked her if everything was okay. “I don’t think so,” she said. “I don’t have MS; I have a brain tumour.”
The news stopped Mike in his tracks. His response is forever etched in her heart.
“He grabbed my hands and said, “We will get through this together. You are going to be okay. You are going to go through surgery, and we are going to walk out of the hospital together.” We had not even been together for two years at that time, and he didn’t run! Most people would have. The fact that he didn’t run …” she said, fading to tears.
Professional Sarah told herself all would be fine – she would have brain surgery and be back to work in three weeks. Maternal Sarah had a harder job; what to tell her kids, now 10-years-old. She knew she wanted to be as honest as possible, but she didn’t want to frighten them, so she opted to keep it simple, saying she had something in her head that didn’t belong there, and she needed to have it removed.
“I guess my daughter needed a little more to go on, so she invented a name for the thing in my head – she called it ‘elephant poop.’ The surgery date was marked on the calendar as ‘elephant poop day’,” she said laughing.
As elephant poop day loomed, Sarah’s steely resolve was pushed to its ragged limit.
“I’m pretty brave, but honestly, I was absolutely terrified to have the craniotomy. I was scared I was going to forget everything. Scared my brain wouldn’t work. I redid my will, wrote down everything I could think of, made notes to my kids …. It was the most daunting thing I’ve ever gone through,” she said.
But when she awoke from the surgery and accurately nailed her bank PIN number, her worst fears were put to rest.
In the weeks that followed, Sarah learned that her tumour was between a Grade 2 and 3, and while most of it was successfully scraped away, there was the possibility of some free roaming cells, hence chemotherapy and radiation were strongly recommended. With reluctance to be apart from her kids, Sarah entrusted them to the care of their father and left her Medicine Hat home to endure the required six weeks of treatment in Calgary.
“The hardest part was being away from the kids. When I came home on the weekends I really put on a brave face. I pushed myself to fake that I was doing okay,” she said. But when her hair started falling out, the potency of the ordeal was undeniable.
“My daughter got scared and she pushed away from me. She was sad when she was around me and this was really hard for me. So, I pushed even harder to make everything okay. In hindsight I think I should have been more real with my kids – I know now that truth builds resiliency,” she said.
During chemotherapy, Sarah began suffering extreme stomach pain, which turned out to be caused by a cyst on her ovary that was reacting to the chemo. Eight months after the craniotomy, in the middle of her year long chemo treatments, Sarah was back in surgery having a hysterectomy.
“My son is very unique – he has Asperger’s, so he’s always been very sensitive. When he was around four, we were at Subway and there was a new employee serving us. She made a mistake, and she was quite upset about it, she said, “I’m so stupid!” My son looked at her and said, “You’re not stupid, I think you’re beautiful and you’re doing a good job!”
This really touched me. I think we all need to stop in the moment and recognize what people are feeling. When people are vulnerable, if we can show kindness, compassion and love, I believe we are putting heartprints out there. It makes a difference. It makes the world such a better place.”
– Sarah D.
If that wasn’t enough to capsize Sarah’s unrelenting spirit, coming home from her six weeks of treatment, she discovered that her dishwasher had sprung a leak and destroyed all of the flooring on the main level of her house. It all had to be ripped up and replaced.
“By this time, I was pretty wiped out and very emotional, but I did what I always do – I pushed through,” she said. For Sarah, with the support of her partner, pushing through meant fixing the floor, selling the house, and with their relationship growing stronger, the pair made plans to move in together and merge their families.
Around the next bend following “that crazy 2018 year,” Sarah was forced to deal with the startling reality that returning to work would not be as simple as she hoped. She would need rehabilitation and a carefully laid out plan to find her way back to her professional life. This hit her hard, given her steely resolve to finish treatment and return to work.
“My kids have always come first, but I’m the type that gives 200 percent at work. Through all of this health stuff I kept saying ‘I can’t wait for things to get back to normal,’ and by that I meant going back to work,” she said.
It took time to comprehend the gravity of changes in her life. Sarah found it difficult to imagine not going back to work, but her oncologist strongly suggested her long term plan should be to focus on her health, since returning to work would put a tremendous strain on her.
Luckily, Sarah had the unwavering support of her mate. “Mike told me to take time for myself, focus on healing, be a mom,” she said.
Blended Family in a Fog
With a new year dawning, Sarah and Mike worked hard to find their new groove, while balancing the challenges and adjustments of a blended family. Still struggling to let go of her professional identity, Sarah resented some of the simple tasks that were now her job. But what she struggled with even more, was brain fog, a common side-effect of cancer treatment.
Living in Medicine Hat, Sarah struggled to find any cancer support resources in her area. Eventually, a local occupational therapist took up her cause, and together they searched for information to help her cope with cognitive deficits from cancer and subsequent treatment.
“Before cancer, I was very high functioning … I could think ahead, multitask, remember dates. I was very organized, and I had a high stress tolerance, I could handle pretty much anything at work. After surgery and treatment, I couldn’t even hold a conversation and chop watermelon at the same time,” she said woefully.
She recalls a day in 2019 when they had a houseful of people for the celebration of her stepson’s 21st birthday.
“We had a houseful of friends and I was finding it impossible to carry on a conversation while I chopped up the watermelon. It was terrible. I thought I was going to fall apart. At that point my hair had started to grow back but still, I felt totally different than everyone else. I felt so alone. No one understood or knew what to say,” she said.
Then, by chance, Sarah’s occupational therapist connected her with another woman who had experienced a very similar journey and was also living with treatable but incurable brain cancer.
“Connecting with Char was the start of my lifeline. Finally, I could talk to someone whose experiences mirrored mine. We had so much in common, in fact, she also had to give up her professional job and found that really hard,” she said, adding that Char was a member of Wellspring and volunteered on the board for the Patient and Family Advisory Council (PFAC) for the new Cancer Center – two resources she said helped her a lot. Char piqued Sarah’s interest in Wellspring but the three-hour commute to Calgary was out of the question.
The pair found out they lived near each other, but they only had time to meet in person once, before COVID hit and the world shut down. Since, they have formed a cherished friendship and they continue to connect and support each other.
Within days of the 2020 Covid outbreak, Wellspring breached the dark by putting programs online.
“For me, Wellspring online was the best thing about the pandemic. The first program I took was Brain Fog. It was almost two years after chemo, and I still had deficits. I sat quietly in the background for the first few sessions just listening to other members say exactly what I was feeling. It was such a relief! I can’t even describe it. I wasn’t expecting to connect with people and feel normal. I came out with so many ideas, tools, resources, tricks, games to make my brain better. I felt like I had my confidence back,” she said.
Then she moved on to Healing Journey, a course she wishes everyone with any kind of illness could take.
“Healing Journey was transformational. I took all levels, one through five. From level two on, it was mostly the same people in the group and we all remain friends. The program leaders were absolutely phenomenal – they touched you through the screen. Putting this program into practice in my life helped me immeasurably,” she said, adding that recently she was moved to take some of the levels over again for even greater impact in her life.
Grateful Sarah finds herself anchored on a new shore … a safe haven steeped in love and renewed faith.
“I now feel I accept what has happened to me. Cancer hasn’t been a curse it’s been a blessing because I have been able to be a mom. As hard as it was to let go, I found my way through it. Wellspring has been another blessing of cancer. Thanks to Healing Journey, I work hard to be present in every moment. Not just with my family but everywhere I go. Mindful presence is kindness. I totally feel like when we practice this we put ‘heartprints’ everywhere we go [see sidebar]… the grocery store, school, a friend’s house, it all matters. This is what I strive for. This is my here and now,” she said.