Fearing death, loving life

Today I received a lovely email from a good friend who was thinking about me, saying: “I’m a bit dumbfounded by the latest round of looking beneath the surface of your cancer to see about other possible issues, etc. It felt overwhelming for me. I so wanted this to just be over for you both. I had not heard of this before and was discouraged to think that this might become a lifelong issue for you. It just doesn’t seem fair! And, why do I have so many women in my life who have or are dealing with breast cancer for whom this issue has not been raised. Are they not getting the level of care that you are? Are your medical people going overboard? What’s the deal????”

Okay, so, I know she is not the only one wondering this. The simple answer is that not all breast cancers are alike. There are many kinds, and several of them have very good treatment available, including drugs like tamoxifen that can be taken for years after the initial treatment of surgery/radiation/chemo are help protect against recurrence. (And some of them aren’t really invasive and arguably shouldn’t be classified as cancer, like DCIS (ductal carcinoma in situ). My cancer is invasive, and it’s “triple negative,” meaning that it is not responsive to estrogen, progesterone, or HER2 (Human Epidermal Growth Factor Receptor 2), and thus cannot be treated by suppressing one of those 3. Triple negative breast cancer (TNBC) also tends to grow faster and recur sooner and more frequently than a lot of other breast cancers.

TNBC is not yet as well-understood as many other forms of breast cancer. It is, itself, not just one kind of cancer, but a general category, sort of a “none of the above” designation. For people with TNBC, the state of the art and best hope for complete cure is to catch it early, which we did, and to achieve a “complete pathological response” to neoadjuvant (before surgery) chemotherapy, which I did not – I had a partial response. There is a lot of active research being done to try to understand TNBC better and to develop additional therapies for it. Some of the research seems to indicate that some kinds of TNBC are at much higher risk of recurrence than others, and there is genetic testing of the tumor tissues themselves to try to differentiate levels of risk and also which kinds of chemotherapy or other treatments might be most effective for which sub-types of TNBC. However, these types of “genomically-directed therapy” are still, literally, experimental: the only way to access them as a patient, it appears, is through enrolling in a clinical trial where I would have at most a 50% chance of receiving further treatment.

So, we could just decide to do nothing further (except perhaps a low-fat diet – which is also questionable scientifically). I am in the midst of trying to find out whether a second opinion from MD Anderson in Houston would be beneficial, before deciding whether to enroll in a clinical trial. This is creating a lot of uncertainty about what the next few months of my life will be like, which is challenging.

I am also, for better or for worse, actually reading a few of the medical research reports. My sister-in-law the doctor sent us some, at our request, despite her warnings that one of them was kind of scary. The other night I couldn’t sleep, partly because I’m going off the sleeping meds I’ve been on throughout my treatment, and partly because I was worried about all of this. I finally got up in the middle of the night and actually read the scary paper. And, it was scary.

For the first time since the initial shock and fear right after my diagnosis, I began really been facing into the possibility that I could die from this disease. The paper I read reported on scientists’ work in differentiating the higher-risk cases of TNBC from the lower-risk ones. This is all well and good, except that in the particular sets of patients they were looking at, around 22% of the people in the LOWER risk groups had a relapse within 3 years, and in the higher risk groups, it was around 50-75%! Yikes!! And most of the relapses were metastatic cancer, which can be treated, but not cured. Double yikes!!!

Now, their sample sizes were small and they were deliberately looking at people with more “chemoresistant” tumors, while my tumors were clearly somewhat sensitive to the chemo (getting a second opinion will get us another reading on how much my tumors responded to the chemo). And, I am relatively young and otherwise healthy… and, I remind myself, a 22% relapse rate means a 78% non-relapse rate. Also, the upside of TNBC having a rapid relapse rate is that after 3 years relapse-free, your chances of relapse go way down.

Still, I would like better numbers.

My step-daughter Sarah likes to ask “Did you cry when ____ happened?” I did cry that night when I read these numbers. Quite a lot. And I thought about starting a real “bucket list.” (Things you want to do before you “kick the bucket.”) The thing is, I couldn’t really think of anything special. Sure, there are things I’d like to live to see. I’d like to live to see world peace, and I’d like to live to find out whether we someday find intelligent life on other planets. I can’t stand stopping a movie in the middle; I want to find out how the story ENDS!! I am as irate about the idea of dying as I was about having to go to bed at bedtime when I was a child. But I know that, even if I live to a ripe old age, I will most likely not live to see these things. And unless there is an apocalypse, I won’t live to see the “end of the story.” That night, amidst my grief and fear, I realized that I really just want more time with the people I love, and more time to enjoy living in this world that I love. (Or, as Anita reminded me Woody Allen famously said, when asked whether he hoped to go on living in the hearts and minds of his fans, “I hope to go on living in my apartment.”)

I finally managed to go back to sleep, and spent some time later that day with a friend walking and talking and eating delicious food (and tracking it on my diet app!) Then yesterday morning, after a better night’s sleep, I was swimming in the pool and I realized that the best antidote to this fear would be gratitude practice. Noticing as many of the moments that I can, the things I love about life, and how grateful I am to get to be living it. Like the sunlight from the skylight at Capitol Lakes making the bubbles in the pool shine and sparkle as they rose. Like the fact that less than 4 weeks after my surgery, I was swimming!!

I had a co-counseling session with Anita that evening, and worked some more on the fear, and anger at the possibility of dying of this disease. I recognize it is important to let myself feel those feelings. Part-way through the session, though, I realized again that my fear and anger exist because of how much I love my family, friends, and life. I actually began to feel somewhat euphoric, putting my attention on how much I want to live. Anita and I also meditated together for a few minutes, and I could actually feel my zest for life, bubbling up through me like the sunlit bubbles rising in the pool.

Today I had a day filled with delightful things. I had another co-counseling session, and then a lovely lunch and circle practice at Threshold. During the intro round we were asked to say a word that described something that made us come alive. “Friends,” “Creativity,” “Nature,” etc…. I resonated with almost everyone’s answer, and realized that my own, for today anyway, was, “Mortality.” Awareness of my mortality makes me come alive. Though not exactly on a “bucket list,” I’d also been wanting to try extending the lake swimming season by trying a wet-suit; so, instead of going home and working this afternoon, I went to Endurance House and was fitted for a rental suit. I have it for 3 days. The sales girl and I agreed that I looked “badass” in it, kinda Star Wars or (she said) Charlie’s Angels. I tried it for a short swim this afternoon in Lake Wingra, and didn’t freeze to death!