I was diagnosed with Stage IV adenocarcinoma NSCLC in July 2020. As if dealing with the coronavirus pandemic were not hard enough, I found out that my slight cough, phlegm, and shortness of breath was not COVID-19, not allergies, not walking pneumonia, not lymphoma, but lung cancer. My husband, James, was not allowed to accompany me to any of my oncologist or specialist visits, the ER, any chemotherapy or immunotherapy infusion, or any of my biopsies due to COVID-19 restrictions, but the things I struggled with most may not be unique to being diagnosed during a pandemic.
Here are some things that helped me and our family of young teens and tween:
The outpouring of love, support, kindness, and advice was tremendous. But it also felt overwhelming. While organizing our support community initially felt daunting and frankly an unnecessary “burden,” it was so special in myriad ways.
To keep our entire support community up to date, we set up a CaringBridge site. Although I have a Facebook account, it never felt like the right place to post this kind of stuff. Not only did CaringBridge turn out to be the perfect place to disseminate information, it became a nice outlet for me to journal on gratitude and finding the humor in things…like when the fire alarm went off when I was being prepped for a biopsy and everyone, including half-dressed patients like me, had to evacuate the building!
So many friends and neighbors wanted to pitch in and help. Carpools were out of the question, so really that left running errands for us or dropping off meals. However, since James and my girls had some extra time on their hands due to lockdown and had been enjoying occupying themselves with cooking, instead of a meal train, James found an ingredients/recipe delivery service that people could send us gift cards for. This worked really well because we could choose our own meals, know exactly what ingredients were in each meal, and change our minds at the last minute if we wanted. My family also got to cook and explore new recipes.
Turns out we have quite a few friends and family who are in the medical field or know people who are in the medical field. James created a separate message board just for this group of people so we could share specific results and have all medical advice shared with one another in case we ever got conflicting or confusing information. It also helped filter out “opinions” not backed by expertise.
Drawing inspiration from survivor stories can be wonderful. Sometimes, though, I need to extract only what resonates with me.
At first, when I read stories of survivors who were also diagnosed with Stage IV metastatic NSCLC, like me, all of them were on targeted treatment. So when my biomarker testing results, both tissue and liquid biopsies, came back with no targetable gene mutations found, I was devastated. I later learned that having a high PD-L1 expression made me a candidate for immunotherapy and met survivors on immunotherapy. That lifted me up immeasurably.
Survivor stories seem to have similar themes. Be an advocate for yourself. Stay positive. Be informed. Don’t use Dr. Google. Find a purpose. All awesome advice. In order to be informed though, I had to do some internet searches. It is absolutely impossible for me not to. It is also absolutely impossible for me to stay positive 100% of the time. Fear, depression, anxiety, you name it, can and will strike me at times -- raw and rough, sometimes all consuming, sometimes just lurking. Reading when a survivor also suffered those dark periods actually helps me. When I read about a survivor going through the same emotional turmoil and still emerged, I feel less alone, more understood. I’m not sure if it is because misery loves company, but I really appreciate authenticity and truthfulness. As for finding a purpose, I’m not sure I found one yet, unless you count my pre-existing one of raising amazing daughters with my amazing husband.
The searing intense burning pain that came with chemo was so much greater than any physical pain I had suffered before that it felt insurmountable. Both prescription and holistic methods were my answers.
I took very little, if any, of the prescribed pain medications following surgery (C-Sections, Achilles tendon repair, hysterectomy). However, during the first rounds of chemo, I asked for higher and higher dosage of morphine and tried combinations of narcotics. Even at the maximum, the breakthrough pain would sometimes be indescribably extreme.
A friend forwarded me information about Jin Shin Jyutsu for cancer patients, which I could do on myself or James could do for me. This helped get me through the roughest deluges of pain.
While I worried about the opioid epidemic, cancer survivors assured me I would not become addicted, and they were right. Gradually, I was able to space out the frequency of the pain medication, then gradually take smaller doses, eventually going off all pain meds entirely.
Once going off pain meds, I wondered if I would ever be able to sleep through the night. I didn’t have too much difficulty falling asleep, but the 1am, 2am, or 3am waking would always result in hours of tossing and turning -- mostly mental tossing and turning. I tried listening to audio books, sleep music, podcasts, and guided meditations, with some success. I received energy clearings, which worked wonderfully to relieve emotional stress and slept wonderfully those nights, but only those nights. What seems to have had the most sustained results is a nightly routine of Reiki self-practice. I still have trouble going back to sleep after some midnight wakings, but it is so much better now.
My thoracic oncologist told me, “It’s a marathon, not a sprint.” I can see the light at the end of this pandemic tunnel and my cancer survivorship road continues on after that. I’m so grateful for the many survivors, friends, and family who have shared their wisdom, encouragement, and love to make my road less jagged. I hope that newly diagnosed and longer term survivors will also find ways to smooth out their paths.
- Balancing Motherhood and Cancer
- A Lung Cancer Patient’s Experience with Palliative Care
- 10 Tips for Lung Cancer Caregiving
Bess Siegal is a software engineer and enjoys developing educational apps in her spare time. She was 47 a few months into the COVID-19 pandemic when she, her husband, and their 9th, 8th and 6th grade daughters found out she had lung cancer. As a non-smoking middle-aged Asian woman, not testing positive for the EGFR mutation added to the shock. Bess is so happy to be past chemo, on immunotherapy maintenance, and not only watching the girls play music and sports again but also biking, running, and balling with her family once more.
See Bess' educational apps at https://siegalkids.com/ and her daughters' bands' instagram channel @Tiger Cubs Band.
Thank you for sharing your story with us Bess and thanks for joining us on the LUNGevity Virtual Meet Ups -- It' s been a pleasure to meet you and all the others survivors!