Jane Nieuwenhuis

The current chapter of my 61-year life began in 2016, in Calgary, Alberta. After months and months of an irritating and obnoxious cough, multiple tests and trial drugs, and finally, the first of several cracked ribs due to coughing, my family doctor sent me to a respiratory specialist, Dr. John Chan. I saw him two days after seeing my doctor, had a CAT scan the next day, and got the results the following Monday, October 3rd, 2016. Dr. Chan said, “I’m not going to beat around the bush; you have an inoperable, incurable, terminal, Stage 4 lung cancer.”

I was stunned and it felt like he was talking about someone else, even though he showed me the octopus-like tumour on the computer screen. I don’t remember what else he said and no one else was with me because no one expected these results. It was very difficult to tell my husband, George, my 4 kids, our brothers and sisters, and especially, my aging parents. All kinds of overwhelming emotions tumbled through me…profound grief, anger, anxiety, and confusion, disappointment, despair…“why me?” 

October 4th was my last day of teaching kindergarten at Heritage Christian Academy, because I was just too tired, and because there was a flurry of tests and treatments. One test was a bronchoscopy, in which Dr. Chan went down my throat and got a piece of the lung tumour. When we had the results, I met the radiology oncologist, Dr. Lau, a cancer doctor who specializes in radiation treatments and he prescribed 10 palliative, radiation treatments, from October 20th to November 3rd. I didn’t feel anything during the sessions but I was super tired. I had sunburn on my back and a burned esophagus for a couple of weeks, resulting in difficulty swallowing, but those side effects went away. I also had an MRI of my head which showed a small brain tumour in the Sylvian Fissure. I was SOOOOO mad at God and cried a lot! I already had cancer in my lung, my bones, and my lymph nodes. Did it have to go to my brain too?

A week later, I was called in to the Tom Baker Cancer Centre for “radiosurgery.”  A mask was made for my face, I was secured to a table and my brain was radiated 4 times, for one minute each time. Again, I felt nothing, but I could not move a muscle!
After all the radiation treatments were done, I was extremely exhausted. Thankfully, my teaching colleagues provided all of our supper meals for 3 months! Listening to music and brief visits kept me going at that time. For my next course of treatment, I was sent to the Medical Oncologist, Dr. Desiree Hao. The bronchoscopy showed that my tumour has a special protein in it--a GOOD situation, because it allowed me to take an alternative, targeted treatment, a pill called “Crizotinib”. This treatment worked well for me, but my liver was not happy with the drug and so I had to go off of my medication for a couple of weeks. Those 2 weeks were really difficult since nothing was fighting the cancer inside of me, and I had a lot of questions for God. I did not feel well, so the doctor ordered a Home Care Paramedic to come over and give me an IV infusion.  Then I went on a lower dose of my medicine and that kept the cancer at bay for a while.

However, in early 2017, my lung started to fill up with fluid. I had to get the fluid drained out of my lungs 3 times, each one draining a whole litre of cancerous fluid, a procedure called, “thoracentesis!” The large needle felt like a bee sting going in, but otherwise, the procedure was not a big deal. In March of that year, I was very sick for 3 weeks, during which I ended up in emergency twice. The first time, the doctor decided it was just stomach flu, but the second time, I had more tests, 8 more visits from paramedics at my house, and a group of doctors decided my drug had caused colitis, an inflammation of the bowel. Oh joy…oh bliss…more drugs: a steroid which gave me heartburn and insomnia, so then I was prescribed a heartburn drug and a sleeping pill! That entire G.I. problem has settled down now so I am back to just my cancer drug, with a probiotic.
The first drug, crizotinib, stopped working in August of 2017. I had another MRI on Labour Day (Sept.4) and received the results on 9/11….multiple new brain tumours. Again, two weeks without any medication and then I was put on a new drug: alectinib. This miraculous drug has shrunk my tumours and kept them stable from September 2017 to the present date!

In April of 2017, I joined the Lung Cancer Support Group through Alberta Health Services. This wonderful group of lung cancer patients and their caregivers, has been of great support to me, along with our fearless leaders, Lisa Lamont (Social Worker) and Dr. Janet deGroot (Psychiatrist). I would highly recommend getting together with others who are on a similar journey. These people really “get it” and can greatly reduce anxiety through their support.

Where am I at now? I struggle with fatigue and require a daily rest. I continue to cough. But I’m still here and the tumour has not grown. I have been given almost 4 years beyond my initial, horrifying diagnosis, which I never dreamed I would receive. Life is a gift and I spend my time giving to others. I volunteer a lot in my church community, sharing my teaching talents with the little ones, my gift of piano playing in worship, and my extroverted nature in reaching out to lonely seniors. I have thoroughly appreciated, and been impressed by, the medical care I have received and continue to be blessed by these amazing doctors and nurses. The activities I choose to participate in are ones that give me joy and ones in which I can give joy to others. I have a strong faith in God, and lots of support from my husband and family of 3 married children, one single one, and 2 (almost 3) grandchildren, along with my extended family and many friends. There are 2 new drugs that we will try after alectinib is no longer effective, so I trust I will be around for a couple more years. My one word of encouragement for others starting this journey is HOPE. You need to cling to Hope, and not lose heart.

This COVID-19 pandemic has meant a lot of social isolation for me, but I have used the phone and Zoom to connect with family, friends and “my” seniors in my church community. My husband and I take a daily lunchtime walk and I am able to join in a “Zumba” class on “Zoom” 3 or 4 times per week. Because I have been careful, I have been able to hold my newest grandchild, Alison, who arrived on my birthday in July!  I hope and pray for a vaccine to be ready soon, as my greatest pleasure is having a chat over coffee with friends. Yes, I hope… and I trust that you will find hope in my story, too!