Finding Happiness Despite Stage IV Lung Cancer

Joann Totten, lung cancer

Joann and her husband, Glenn.

By Joann Totten

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.

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.

Joann Totten, lung cancer

The Totten family before Joann’s diagnosis.

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.

Joann Totten, lung cancer

Joann with her daughters, Mei and Lia.

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.

 

Learn more about lung cancer treatment and research at Dana-Farber/Brigham and Women’s Cancer Center.

 

 

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One thought on “Finding Happiness Despite Stage IV Lung Cancer

  1. Joann – I am in the same battle and my heart goes out to you and your family. I’m also Stage IV NSCLC and was diagnosed on 3/27/15 with a single Brain Met. Thankfully, my brain met was treated first by SRS and I have not had any recurrence. I had no Lung Symptoms (still don’t), it was ironically symptoms caused by the brain tumor that sent me to my doctor and for an Urgent CT Scan. I thought I had Vertigo — but it was Cancer. I spent the next week hospitalized and that’s when I learned that I also had a Pulmonary Embolism and that the brain tumor was a result of Lung Cancer and had spread to my brain. I was one sick gal and totally overwhelmed – thinking back now those first few weeks, seem like a blur….

    I’m now on Immunotherpay for my Lung Tumor (also inoperable) and despite it’s side effects, it has worked well for my and my tumor is now significantly smaller and has been stable for the past few months.

    Like you, I’m also a Mom, however my children are now adults and I’m also now expecting my very first Grandchild (A baby girl) in February. This has been a dream of mine fo many years, but it’s also very bittersweet to know I will likely miss so much in her life. The hardest part and greatest fear for me, is learning my sons and now her. I’m also writing journal for my Sons to be given to them in the future and now I want to do something similiar for my grand-daughter too.

    I live each day as they come and hope and pray that my treatments will help me stay in this battle for a long, long time and that hopefully a “Miracle” treatment will come soon and save our lives!

    Please take care — You are not alone — this is such a hard and devastating illness –.truly heartbreaking and we need to promote Lung Cancer Awareness and help stop the Stigma.

    Hugs and Healing thoughts,
    Lisa

  2. Joann – I am in the same battle and my heart goes out to you and your family. I’m also Stage IV NSCLC and was diagnosed on 3/27/15 with a single Brain Met. Thankfully, my brain met was treated first by SRS and I have not had any recurrence. I had no Lung Symptoms (still don’t), it was ironically symptoms caused by the brain tumor that sent me to my doctor and for an Urgent CT Scan. I thought I had Vertigo — but it was Cancer. I spent the next week hospitalized and that’s when I learned that I also had a Pulmonary Embolism and that the brain tumor was a result of Lung Cancer and had spread to my brain. I was one sick gal and totally overwhelmed – thinking back now those first few weeks, seem like a blur….

    I’m now on Immunotherpay for my Lung Tumor (also inoperable) and despite it’s side effects, it has worked well for my and my tumor is now significantly smaller and has been stable for the past few months.

    Like you, I’m also a Mom, however my children are now adults and I’m also now expecting my very first Grandchild (A baby girl) in February. This has been a dream of mine fo many years, but it’s also very bittersweet to know I will likely miss so much in her life. The hardest part and greatest fear for me, is learning my sons and now her. I’m also writing journal for my Sons to be given to them in the future and now I want to do something similiar for my grand-daughter too.

    I live each day as they come and hope and pray that my treatments will help me stay in this battle for a long, long time and that hopefully a “Miracle” treatment will come soon and save our lives!

    Please take care — You are not alone — this is such a hard and devastating illness –.truly heartbreaking and we need to promote Lung Cancer Awareness and help stop the Stigma.

    Hugs and Healing thoughts,
    Lisa

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