Update #3 4/14/14
I’ve kept pretty quiet about my condition in the last couple of months despite the fact that my last two rounds of scans have been very positive. There are a couple of reasons for this. One reason is good ol’fashioned Jewish superstition – don’t talk too much about the positive stuff or you’ll attract the evil eye. I had a grandmother who uttered “kineahora” at the mention of the slightest good fortune; more substantial fortunate events merited two kinehoras + three pretend spits. The other reason is that I have a big fear about misleading people.
There is a big difference between short-term good news, and long term “you’re cured” good news. When I was first diagnosed, I was referred to two other younger, non-smoking women with advanced lung cancer. I was told I should talk to them because they were cured! I loved the idea of these miracle stories, especially in the face of some pretty dire statistics. But, when I talked with these women, I heard a different story. Both were still in active treatment, taking targeted gene therapy drugs daily. These drugs are revolutionizing treatment of lung cancer and can look like a miracle “cure” to the casual observer. But unfortunately, these drugs do not work forever. Depending on the patient, these sorts of gene therapy pills can work anywhere from a couple months to years, with the average falling around 8 mos. Scientists are working on second and third line drugs to follow, but all are still in research phases, and the path to a permanent treatment is far from clear. Additionally, these drugs have non-trivial side effects (e.g. gastrointestinal issues, skin sensitivity, muscle or joint pain, extreme fatigue). The side effects are more tolerable than full-blown chemotherapy for most, allowing patients to return to something resembling their former lives, which is amazing, but deceiving to the general public. Scratch the surface of some of the miraculous cure stories out there, and the reality is quite different.
Additionally, I don’t think it’s possible to travel this cancer journey without picking up a touch of PTSD. One day you think you are healthy, the next you hear you have cancer. Life changes in an instant, and your relationship with your body is forever altered. The internet is full of stories of lung cancer patients who are doing well, and suddenly take a turn for the worse, jumping from stable or even “no evidence of disease” to unstoppable metastases and hospice in a matter of months. These stories keep me up at night because I know all too well now that things can turn on a dime, that a seemingly healthy body may not be, that things you can’t see or feel, can nonetheless still be there.
So, now that I’ve properly depressed you and tempered your enthusiasm in a manner that would make my grandmother proud, I can get to the good news.
My doctor called my most recent PET scan “miraculous.” After four chemotherapy cycles, my PET showed only one small nodule in my lung with minimal activity, and no evidence of metastases beyond the lungs. I’m still Stage 4 (apparently that’s a badge I get to have for keeps). But, I’m ready to transition to more manageable treatment options. I will be switching to a “maintenance chemo” regimen, reserving the gene therapy drug for use when the chemo well runs dry. The hope and prayer is that both the maintenance chemo and then the gene therapy drug will each hold my cancer at bay for many months, or even years, at which point who knows what further options will have opened up. (If you happen to be thinking good thoughts or prayers for me, short of miraculous total eradication of my disease (which I’m still holding out hope for!), long-term effectiveness of these drugs would be a good thing to focus on!).
All things considered, these are very good results. I can see a path back to something resembling a normal life. I am feeling very grateful and cautiously optimistic.
Kinehora, kinehora, pew, pew, pew.