joann-and-girls

Joann (center) with her daughters, Mei and Lia.

Today’s post is written by Joann Totten, a patient at Dana-Farber/Brigham and Women’s Cancer Center.

As a non-smoker, I never imagined I would be diagnosed with stage IV lung cancer, let alone at age 50. But that’s what happened on Aug. 5, 2015, just six weeks after I started experiencing a non-productive cough. The doctors felt certain it was bronchitis, but as a radiation therapist for more than 20 years, I advocated for myself and insisted on a chest x-ray, which came back a bit abnormal. After additional testing for tuberculosis and pneumonia, I began experiencing shortness of breath and had another chest x-ray and CT scan. When I saw the scan, which was hard to believe was mine; I knew immediately I had cancer. A few days later, a biopsy confirmed my diagnosis: non-small cell lung cancer, stage IV.

Although it’s been more than a year, it’s still so hard to believe I have lung cancer. I never smoked, I exercise, and I eat very healthy; I thought I took pretty good care of myself. But cancer doesn’t discriminate; all you need are lungs to be diagnosed with this disease.

before-diagnosis-1

Joann with her husband, Glenn, and daughters before her diagnosis.

Because my cancer has spread, I am not a candidate for surgery or radiation, and have instead undergone various rounds of targeted therapy, chemotherapy, and immunotherapy, to slow the cancer’s growth. These treatments have had their ups and downs as my cancer has adjusted and learned how to resist the drugs, but I expected the physical side of treatment to be difficult. What I didn’t expect was how much cancer would affect me emotionally.

We all know we are going to die, but knowing that it’s going to happen sooner then you ever imagined is the hard part. The unknown of when my treatments are going to stop working is something that I think about too often. Living each day with this hanging over me, while still having a smile on my face and continuing to remain positive, is not easy. I find it difficult at times to remember much of what life was like before my diagnosis. These days I wake up wondering how I am going to feel and what side effects I’m going to experience. I used to wake up and think about my workout, my errands, and my kids’ activities. Life is different for sure.

One thing that this diagnosis does allow me to do is write letters to my girls; to say things to them I may not have the opportunity to otherwise. I know chances are slim that I will experience the many milestones in my girls’ lives, like seeing them get their drivers’ licenses, go to prom, graduate from high school, and go off to college. Having a terminal illness, I can’t help but think of these missed moments. If I do get to see any of them, you have no idea how much I will appreciate every moment.

As a family we are doing the best we can with news that no family should ever be faced with. I try to cherish every moment, even the crappy days of blood work, scans, and treatments. There is still happiness in our lives – taking a family trip to my girls’ birthplace in China, watching them play volleyball and skate, walking our dogs, and sharing a laugh – and these memories can never be taken away. I have countless friends both past and present who have been so supportive of my family and me, and I can’t thank them enough. This is a true gift of life – the generosity, love, kindness, and selfless acts of so many wonderful people who have come to my side and strengthened my spirit.

We never know what treatments will work and for how long, but I am here today and that’s what matters most. Despite my illness, I know that I am blessed, and I remain positive and hopeful that there is a treatment that will work effectively to fight my cancer and provide me with time, time, and more time. But for now, my journey continues.

This post originally appeared on Insight, the blog of Dana-Farber Cancer Institute.

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