Before my husband Jeff’s diagnosis life seemed nearly perfect. After 8 years of being together we finally decided to try for a baby. We had already been blessed with two boys from my husband’s previous marriage. This baby would be our first together. Aside from our family, we enjoyed running (my husband has run 4 half marathons in the past two years), antiquing, live music and art, and also managing a small ebay business together.
Jeff’s diagnosis was a complete shock. The only symptom he had was a cough that lingered after he recovered from a mild cold in the winter. Six months later, the cough had become a nuisance so he went to his primary doctor to get it checked out. Since Jeff had never smoked, lung cancer never crossed our minds. We both thought that he may have developed adult onset asthma, and in fact his doctor thought it might be the same thing. And so an inhaler was prescribed. But before Jeff left the doctor’s office, his physician decided to order a chest x-ray to make sure his lungs were free of scar tissue… maybe his mild winter cold had actually been walking pneumonia.
When Jeff’s xray revealed a shadow, a CT scan was ordered. We both were fearful that something serious could be wrong, but again we never thought lung cancer. The doctor asked us both to come to his office one day after his scan and that’s when he told us Jeff might have cancer… possibly lymphoma or lung cancer. We were referred to a thoracic surgeon who performed a biopsy. While Jeff was in the recovery room, I (along with Jeff’s family) was told that he had cancer. At that time I was 4 months pregnant. I felt helpless, out of control and scared. When Jeff was lucid enough to receive the news, the surgeon talked to us both. At that time the surgeon thought that removing part or all of the lung would be our next step. After more scans and testing we learned that Jeff was stage IV; the cancer had spread to his lymph nodes in the lung and to his liver. The bright side to our experience at this point was that the surgeon took enough tissue during the biopsy to test Jeff’s cancer for genetic markers.
We found out he was ALK+ and a candidate for a fairly new
targeted therapy called Xalkori.
We were handed off from the thoracic surgeon to an oncologist who worked with us to stage Jeff and prescribe his treatment. Once Jeff started therapy we sought out a second opinion to gain more information about his cancer and talk about future treatment options. Our local doctor now works closely with our doctors at Dana-Farber in order to make treatment decisions. We are more confident and hopeful since seeking out the second opinion.
The diagnostic process took about 6 weeks from start to finish. Jeff had an xray, CT of the lung, lung biopsy, PET scan and a liver biopsy. We received information about a couple of different chemotherapies, targeted therapy (the one he’s on), surgical options (before we knew his cancer was metastasized), and the future of lung cancer including clinical trials. The information was overwhelming and it changed as we gained more information about where his cancer was/wasn’t and what type it was (Stage IV, NSCLC, Adenocarcinoma, ALK+).
As his wife and primary caregiver I’ve taken on the role of researcher so that Jeff can focus on his wellness. I’ve joined online support groups/forums where I’ve met other caregivers and patients. We share information with each other that we find online and through our doctors. I frequent the clinicaltrials.gov site to see what new trials are happening and where. I often will watch the Living Room when there’s a topic I feel is relevant to our situation (they’re always VERY informative and hopeful).
We’ve realized through this process that knowledge truly is power.
The better we understand Jeff’s illness, the current treatments and the future of medicine the more positive we are about our journey. That’s helped us to maintain a hopeful outlook that our friends, family and co-workers have said they find inspiring. One person told Jeff that he has become his hero because of his strength and positive attitude. I think our outlook and approach to life now has helped others take a step back and remember what’s important to them in their own lives.
Someone reached out to me and we’ve become friends. His wife is battling lung cancer and they have two young children. Our journey has been very similar, in fact our spouses were not only diagnosed around the same time, they also share the same birth month and day.
The amazing amount of research coupled with our growing faith in God has helped keep us positive. We are also fortunate to have a very strong and large support system in our family, friends and co-workers. We’ve been able to build up our support by being open about what’s going on. We share our story with people and via a blog. We also have been open to receiving help and that allows people in, people want to help and will help if you let them.
Life with cancer is challenging and scary, there’s no two ways around that. It’s filled with appointments, scanxiety and uncertainties that we’ve never faced before. It’s brought the concept of mortality too close for comfort, especially at our young age. However, it has also given us a better perspective on life. We cherish moment and experiences now that we used to rush through and take for granted.
Moments with family and friends are sweeter than ever before.
And our love for each other has grown in ways that I cannot put into words. Cancer has also tested our strength individually and we’ve both met the challenges and are thriving in ways we didn’t know we could.
The BJALCF is amazing. The amount of information that the foundation brings to patients and caregivers is insurmountable. From the Living Rooms to the website, the handbook and the Facebook updates it’s quite possible the best resource out there. It’s also life giving to hear about all of the research and programming the foundation is starting up. It gives us hope that with each month and each year we live with this disease, there will be something else available to us to make this illness a chronic and livable disease.