Diane Van Keulen
Beyond Limits
by Diane G. Van Keulen
I survived and healed from Lyme Disease. I survived a severe concussion. However, the universe was not done challenging me just yet.
After years of odd, unexplained issues occurring with my body, not relieved to any degree by various treatments, and out of desperation driven by pain, I went to see a new, local chiropractor. This progressive doctor realized something was amiss. Ribs that continually “rotated” out of place (off and on for two years), scapula pain that prevented standing, walking, sleeping (constantly for 4 months), and tenderness along my spine were some of the clues. I remember her telling me that I should have been responding to treatment, but I was not.
It was March 28, 2019 when I finally decided to go to the ER for pain relief and with a requisition from the chiropractor in hand for a chest x-ray. That was the day, unbeknownst to me at the time, that I would no longer be able to resume my career as an elementary teacher. I asked my students to be good for my supply teacher and I would see them the next day. That “next day” never happened - I would not step foot back into my classroom from that day forward (except to visit months later).
That was the day I had not only one chest x-ray, but two. Following those, one CT scan and a few hours later yet another. That was the day, after a long, ten hour wait, I received the mind boggling and unbelievable news. I had Stage 4 lung cancer. It had spread from the lungs into lymph nodes, the right scapula, various ribs, and several spinal vertebrae. Wait….what? How does anyone even process and cope with that kind of news!
By midnight, I was admitted into the cancer ward and for the next eight days underwent every test known to man (well, at least it felt like that ☺) in order to confirm where the cancer was and was not. Also, that unbearable pain was the doctors’ priority to get under control. Those eight days gave me the space I needed to understand what was going on – to gather my strength, to let loved ones know, and to pull my mind up out of the fog of realizing I had “Cancer” at 59 years of age. To realize, but NOT accept, that it was terminal and incurable.
The shock of making the connection between these physical issues and the diagnosis of Stage 4 lung cancer was surreal. It was devastating. I was healthy. I never smoked. I had a rewarding career as a full time teacher. I finally built my own private riding stable. I was not ready to leave my family or my life!
The past year has tested my spirit and strength to the absolute limits. I needed to reinvent myself and be at peace with my new decisions. I lost my identity when I could no longer be a teacher, but found a new one by connecting with other lung cancer survivors. Quickly becoming as well versed as I could about my cancer, available treatments, and side effects, I became my own advocate and made sure my medical team knew I wanted to know everything. I researched, I questioned, and I never gave up.
Once the lung biopsy results came back with a 75% expression of PD-L1, I was put on pembrolizumab - an immunotherapy drug. Months later, radiation took care of the painful bone lesions and progression of one main lung tumour and one lymph node. I slowly became pain free and no longer needed narcotics to cope. However, other tumours continued to grow and for whatever reason I was not responding as well to the immunotherapy as was expected. Chemotherapy was recommended. I was not ready for that yet. After all, I was still alive and actually not doing too badly on the current treatment. Though I couldn’t work, in some ways my quality of life was much better than it had been in March.
Last fall, a new clinical trial opened up and I asked to be tested to see if I would qualify. I did and my first treatment was February 14th, 2020! I was very excited to be a part of this new, vaccine driven treatment. Unfortunately, only a mere two months later, scans showed rapid progression on my tumours in my lungs and some lymph nodes with three new ones appearing in my left lung. A treatment that I should have been responding to was not working, and I can’t express how much despair I felt when I learned I had even more tumours in my lungs.
Radiation treatment was added again for a collarbone lymph node that was becoming very painful - second round for this one! The next step, along with my incredible medical team, was to make the decision that I had to be removed from the clinical trial immediately. Within a week, I began my first round of double platinum chemotherapy treatment. I became very ill during that cycle. The next three cycles of chemo were adjusted so that I would tolerate the side effects easier. As of July 24, 2020, I have finished the four cycles and now am on a maintenance dose of chemo indefinitely. I hate how I feel on the chemo! As much as I push through the side effects, I am not even close to how clinically well I felt prior to this.
A recent scan showed a “mixed” response to the chemotherapy treatment. The good news was the two lymph node tumours were shrinking, as were two of the lung tumours. But one lung tumour was continuing to grow. The others were not significantly growing or shrinking. I have “mixed” feelings about these results but have to focus on the positive parts.
In the meantime, my blood biopsy results revealed that I have a rare mutation called RET fusion (1-2% in lung cancer patients). This may explain why my previous treatments had minimal effect on dealing with my cancer. The good news is that there is a targeted drug for this (selpercatinib), but the bad news is that it is not available in Ontario at this time. On May 8 of 2020, it was just approved for use in the US after clinical trials. My oncologist has started the process to see if we can get this treatment approved for me. Even though it has shown impressive results in reducing and even eliminating tumours, it does come with side effects (what treatment doesn’t?), which has my doctor concerned. So I wait again while I struggle with some important decisions while I seek approval. It feels like more limits have fallen on me.
It may seem odd, but this current journey has opened my eyes to how very blessed I am. My family, friends, and colleagues came alongside to support me, to hold me up emotionally and physically (and bring me food). Without them “circling the wagons”, I wonder if I would have been as positive about life and my future as I am. I have connected with a community of other lung cancer patients, on social media, and we support each other by sharing information and offering constant encouragement. This all means the world to me, and those limits I feel and the heaviness of this disease are often lightened and float away!
One year later, I have already beaten the prognosis of only a few months to live. I am still here for a reason. With hope, faith and trust in God, that He will lead me on this journey, I am able to carry the overwhelming weight of this diagnosis.
I laugh, and I smile and I cry. I pray and I trust. I am fighting and I am surviving. Most of all, I am learning to live without limits!
