An Interview with My Husband
Since I’ve written many articles from my perspective as a person living with lung cancer, I thought it might make a good change of pace to include my husband’s reflections on my diagnosis and journey. We’ve been married for 25 years and he’s been with me every step of the way, as my greatest supporter. He agreed to answer some interview questions for me as part of today’s article.
Newly diagnosed from my husband's perspective
Q: What did you think when I first started going to doctors’ appointments in 2013 for my neck and elbow pains?
I certainly never imagined that you would be diagnosed with stage IV lung cancer! Initially, I thought everything was stress-induced because of all the pressures and life events going on at the time, such as our older son’s bar mitzvah. Once it became clear that the physical therapy wasn’t working, however, I started having some thoughts that it could be something worse. I was thinking something muscular or skeletal, though — cancer never entered my mind. Even when a biopsy was suggested, I still didn’t think it was cancer and definitely not lung cancer.
Q: What were your thoughts when you heard my diagnosis?
I was shocked. I believed the orthopedic oncologist when he said that the biopsy of your elbow would mostly likely be benign. That’s what we’re all trained to do — believe doctors. It’s a rude awakening when you realize a doctor can be wrong.
It just kept sounding worse and worse. It wasn’t just that cancer cells were found in the biopsy and it was cancer of the bone. We were told that these cells had spread from somewhere else, the lungs. Your diagnosis seemed very dire because the orthopedic oncologist was pretty pessimistic. He didn’t know much about lung cancer since he wasn’t a thoracic oncologist. He didn’t mention anything that made me feel any glimmer of hope. Basically, I heard that you should put your affairs in order and you’ll be dead soon. That’s what I thought would happen.
Lessons learned over the years
Q: What do you know now that you wish you knew then?
That you would be interviewing me 7.5 years later! I would have been in a much better place mentally if I knew the plan upfront and what you would need to do, instead of letting the worst possible thoughts and the internet be my only guiding light initially. I would have liked to have known that there were lots of new scientific developments in lung cancer.
There was literally no medical professional providing us with any hope until we found Dr. Patel as your thoracic oncologist and met her a few weeks later. That was a game-changer. The orthopedic oncologist mentioned that there was always a slight possibility of being an outlier with respect to treatment, meaning beating the statistics. It sounded very unlikely though. I wish I knew there really were no good statistics and not to pay attention to 5 year survival rates.
Let's talk about being a caregiver
Q: What has been helpful to you as a caregiver in the 7.5 years since I have been living with lung cancer?
Several things. First, I started learning more about lung cancer and read some of the articles from reputable sites that you forwarded to me. I met more and more people living with lung cancer through you and learned that others have lived with this for many years. I started to realize there was hope and there would be enjoyment still ahead, including moments just to live and breath. Therapy and anti-depressants/anti-anxiety medicine helped as well. It’s hard to know what would have happened if I didn’t prioritize my mental health.
Q: Do you like the term caregiver? Is there another term you would prefer?
Caregiver makes me think of someone who really needs help — help with basics like showering, getting in and out of bed. I was more of that at the beginning, the dark days. As therapy kicked in, I became less and less of a “caregiver” and more of a listener and sounding board. Maybe the term “partner” would be better? That sounds like we’re not married, though. How about a compassionate companion? That’s not right either; it sounds too much like someone who would help in hospice. It’s difficult to come up with a perfect word.
Reflections on life today
Q: How do you view my diagnosis now?
Sometimes I have to remind myself that you still have lung cancer since you have no evidence of disease. I think of you as a survivor since the mother tumor was removed. I try to remind myself though that you’re still a patient; you still take medicine every night, have periodic scans, visit the doctor. The medical community isn’t congratulating you and doesn’t consider you “cured.”
Q: How do you think our relationship has changed since my diagnosis?
I think our marriage is stronger ironically because of your diagnosis. We’re a lot more real with each other. You really don’t know what you’re made of until you’re faced with the worst and having a spouse diagnosed with what is considered a terminal disease is the worst. I don’t think there is anything that’s worse.
None of us in the family believe in the fantasy that everything is always going to be ok anymore. We’re no longer going through life innocently. Strength comes from understanding this, learning how to deal with it, and move forward. Our children always knew when things were happening and why along with us.
Advice and encouragement to other caregivers
Q: Do you have any words of advice for the caregiver of newly diagnosed person?
Just don’t let your worst thoughts get ahead of you. You just don’t know that much when someone is newly diagnosed because it takes many months. The cancer didn’t happen overnight so don’t expect to understand it overnight. It will take a while to get a grip on it and what it means and determine what to do about it. Just be kind to yourself in the meantime.
Have you experienced insurance obstacles in your lung cancer journey?