In February of this year, while on call at the hospital, I felt a very hard, swollen lymph node right above my collar bone. We were taught in medical school that this is never a good sign, aka "cancer!" I knew it had to be either upper GI tract or lungs, but my digestion was perfect since adopting a vegan, whole-food, plant-based diet 1 year prior. We went vegan to support Olof's health. Well, since I had a pretty good breast oncology surgeon, I asked him to order a CT scan, and, after those results, and excisional node biopsy.
The first diagnosis: non-small cell lung cancer, typically a smoker's disease. I was told over the phone while at work. Yup, I cried like a baby. But I had never smoked. In fact, I had a pretty purpose-filled life. Perhaps too much purpose. The delicate balance between work and raising two very active daughters, while having to take in increasing amount of call, was beyond challenging. There was no playbook for this.
Backtrack to 3 months prior to diagnosis: I sat in our CMO's office asking for decreased call. I was begging for a reduction in salary in order to implement this, pleading "I can't do this for much longer. I'm burning the candle at both ends, and I'm afraid something's going to give." How wise my body was. All my mouth was asking for was no weekend calls, while inside, the house was going down in flames!
At diagnosis: Right middle lobe of lung was the primary, all mediastinal nodes involved, enlarged, and matted down, even encircling my pulmonary artery. I had neck node involvement, an even pelvis and neck of femur. Then, there was a full month from initial diagnosis to the more refined diagnosis. I actually had to have 2 separate biopsies for sufficient tissue to determine the genetics of this cancer. Then came the phone call from my oncologist, who normally sounded rather somber, suddenly sounded like she had had a liquid lunch! Her first words were "Congratulations! You're Alk+ and you can have a targeted agent!" I mean, I could hear the champagne cork pop!
So what does Alk positive mean for a lung cancer patient? It means you can live years rather than months. It means being able to mother your children, to kiss them all the more times, to revel in their laughter, to embrace your spouse, and enjoy each other, it means you still get to practice medicine and actually treat your patients even better because you are a patient! And it means that there are several targeted agents (pills) you can take, until the cancer becomes resistant, and then they switch you to another.
Alk is a spontaneous genetic mutation, NOT associated with tobacco or any other carcinogen. 65% of newly diagnosed patients are women under the age of 50. The targeted agents are very effective. The tumors inside my body are almost all gone, enabling me to exercise and go to work and keep up with my kids. I might even have "no evidence of disease" in my next scans. I never did stop running, despite the bone mets in my pelvis and femur, as the lack of vigorous movement felt like death. I have always enjoyed movement, and I am grateful to be able to do all these things. Moving your body is a privilege!
So what's the problem? Targeted agents don't work forever, and after switching from one to the other, the tumor builds resistance to them. Federal funding is virtually non-existent for this disease, as it is considered a self-inflicted affliction. Hence, the research for better treatments and a cure is privately funded.
This fundraising drive will help fund the phase I clinical trial that will be jointly run by my oncologist, Dr. Alice Shaw, and Dr. Mark Awad, in Boston. The clinical trial will be looking at individual immune systems of various Alk+ lung cancer, as it has been discovered that some patients' T cells do recognize the tumor.
This is very exciting, and the research could potentially help hundreds of thousands of lung cancer patients throughout the world.
Thank you for your generous contribution. We would be nowhere without your generous spirit and encouragement. Namaste!