“My Voice” by Jill Feldman

Jill Feldman - 'Survivor'

I knew I was at high risk.  But, I’m still in shock and the diagnosis is still so surreal; as if it were written into a script–except who would believe that the president of a lung cancer organization, a healthy 39 year old mother of four, with my family history, would actually get lung cancer!  Let me explain.

When I was 13, two of my grandparents died from lung cancer within weeks of diagnosis and within weeks of each other. It was terrible. Just six months later, in the blink of an eye, my world turned around when my dad was diagnosed with lung cancer.  And, when he lost his battle three months later at the age of 41, my world shattered and life was never the same.  After a 10 year reprieve my close aunt Dede was diagnosed with lung cancer.  It was discovered early and after surgery to remove the lesion she was considered cured – we had caught a break.  But, two years later she was diagnosed, not with a recurrence, but with another primary tumor in her other lung.  Again, it was caught early – she had another surgical cure and we caught another break. Two years later, when we half expected something to show up on Dede’s scan, it was clean.  We celebrated the good news–but not for long.  That’s when we learned that my mom, too, had developed lung cancer, only my mom’s was inoperable, and it wasn’t long before we knew we weren’t going to catch a break this time.   My mom died 6 months later at the age of 54.

After losing my dad, losing my mom was my worst nightmare comes true.  I was 28, nine weeks pregnant and had a 15 month old.  I couldn’t fathom life without her.  But, I was lucky to have Dede, who quietly assumed responsibility of my family.  Only, less than a year after my mom died Dede was diagnosed with yet another primary tumor in her lung. Once again, it was small and detected early, but she had lost too much lung tissue in the first two surgeries; another surgery would have left her severely disabled so we helplessly watched that tiny lesion spread throughout her body and kill her at the age of 56.

I had no control over my losses, but my attitude in how I dealt with it was my choice.  I had to find a way to transform my fury against lung cancer into something positive.  I was horrified with the statistics and lack of funding for the #1 cancer killer.  And, the lack of advancements in treatments in the 14 years between my dad’s diagnosis and my mom’s was unacceptable!!  A group of lung cancer survivors in the Chicago area, equally horrified, had just founded the LUNGevity Foundation, an organization that raises money for lung cancer research, and I got involved.  For the past eight years, as a volunteer, board member, past president and now Chair, I have gained some control over my losses because LUNGevity has empowered me to make a difference, to help in the fight against the disease that won’t leave me alone!

The other control I had was to be my own advocate.  The thought of my children ever having to endure the pain and sadness that’s still heavy in my heart was unbearable.  Because of my disastrous family history, I started getting CT scans when my mom was diagnosed in 1998.  My first two were crystal clear, but in 2006 there was a suspicious lesion the doctors merely wanted to watch.  For some reason I wasn’t worried.  I had my brother’s pulmonologist, also a LUNGevity medical advisor; look at my scans when I accompanied my brother Tony to his appointments.  Because of Tony’s severe emphysema, I was always worried about something showing up on his scan.  So, I was hardly prepared last December (2008) to hear that it was MY scan that looked ominous.  I’m still in disbelief.  I had been going with Tony to his appointments every six months for six years, preparing myself each time, to hear that HE had lung cancer. Not ME!

I was anxious about telling my husband and family; really, how many times does one family have to hear “its lung cancer?”  Even with a good prognosis, the words are devastating.  And, having to tell my kids?  I couldn’t even look them in the eyes without feeling sick.  A parent wants to protect their children from the “unimaginable.”  I had lived it, so I could do more than “imagine.”  At 12, 10, 8 and 6, all they knew of lung cancer was family and friends we had lost. So for them, lung cancer simply meant death.  Like my older two, I was in middle school when my dad was diagnosed, so I remember the fear and anger, and I could identify first hand that defining moment when your world is no longer safe.

Because of LUNGevity I was fortunate to have many contacts in the lung cancer world. There was a consensus, among the many doctors I had look at my scans, that it was a cancerous lesion and needed to come out. I went through the motions of meeting with surgeons, setting up tests, preparing for surgery, etc. as I had so many times before with friends and family who battled lung cancer. I am comfortable in that role and I’m good at it, but this time I was the patient and that part has really never sunk in.  Since lung cancer has been such an intimate part of my life for years, keeping it at arm’s length wasn’t/isn’t so difficult.  Protocol and best shot at a cure for early lung cancer is a lobectomy (removal of a lobe in the lung), but because of my age, family history and the likelihood of more lesions popping up in other parts of my lungs, I didn’t want a whole lobe removed.  I wanted a lung sparing operation.  I have a long life ahead and I was concerned about “running out of real estate” like my aunt Dede!  My surgeon tried, real hard, but there were cancer cells on the cut and the preliminary path was adenocarcinoma (more aggressive form of lung cancer than the bronchoalveolar carcinoma they had thought it would be).

I had an upper right lobectomy in January 2009.  My recovery from surgery was not easy. The pain/nauseous was difficult to control, but after a few weeks I had to start thinking about adjuvant therapy.  Stage I lung cancer patients have a 40% chance of recurrence of metastatic disease and the benefits of chemo as adjuvant therapy aren’t great.  But, currently there is a clinical trial where after surgery stage I patients take Tarceva, a targeted therapy that has shown promise in advanced patients.  Theoretically, Tarceva should kill any micro metastatic cells left behind, and ultimately reduce the percent of recurrences.  I didn’t participate in the trial, but I still had the choice to go on Tarceva. There isn’t any research supporting it as adjuvant therapy yet, but I couldn’t be guaranteed 100% that cells weren’t left behind. I opted for the extra “insurance.”  I have to be able to look back with no regrets and know that I did everything in my power to be here to raise my children.

Tarceva doesn’t come without cost.  I am extremely sensitive to it and the side effects, including foggy brain, nasty rash, mouth sores, raw skin, split nails, and fatigue, are uncomfortable, painful and frustrating.  I have a high tolerance, but I also don’t want my friends and family, especially my kids, to see me miserable or carry any of the burdens. I’ve always been considered strong, a “rock,” in all of their eyes and to maintain that image I underplay how I really feel at times and conceal my discomfort. This is my battle, not theirs, and they shouldn’t have to worry about me.  I need them in other ways; their support and their inspiration have helped me through the worst of it.

Cancer changes everything.  I think about it every day, worry about tests, scans, etc., but I try not to focus on it. It takes a lot of energy to think positive; especially when I don’t feel it. There were, and still are, many times I want to crawl in a hole, but when I come out I have two choices.  If I dwell on my tragedies, and now my own diagnosis, I will let lung cancer win.  I choose to move forward and fight for myself, my family and the hundreds of thousands suffering from lung cancer.  My kids ask if I will get lung cancer again and if I will die. They ask if I am scared, if I miss my mom and dad and they ask if they are going to get lung cancer.  I do the best I can without lying, but to see lung cancer steal their innocence, as it did mine, is heart wrenching.  So, when I feel down I think about my kids; tucking them in at night and seeing the fear in their eyes.  My choice to move forward is easy and it’s with new determination.

I’ve been on both sides now.  Everything I have become and everything I have not is both directly and indirectly related to lung cancer. The disease only recently invaded my lungs, which now defines me as a “lung cancer survivor,” but it has relentlessly tried to kill my heart and my soul time and time again.  Therefore, even though my own diagnosis was only last year, I consider myself a survivor of lung cancer for 27 years. My experience as a survivor- in both senses- began when lung cancer first chose to pick on my family and will continue for the rest of my life.

Regardless of whether I face more battles with lung cancer, until there is a Cure, I wake up every morning grateful that I have the Control and Courage to make a Conscious decision and a Choice to be a survivor.  Those are the “C” words I focus on – not cancer!!!