This is what I learned in the spring of 2011: When a terminal illness finds its way into the life of a family, we become remarkable resilient finding our way through changing “new normals”. We have time to build up reserves of courage, though we don’t know we are doing that. Then, there comes a point, a tipping point, and we know down in our bones that we have started walking the last length of the journey. That moment came in April of that year. My mom, mami, as I called her, had been through several lines of hormone and chemotherapy, for metastasized breast cancer. Each line lasted a shorter amount of time, each had harsher side effects. The options were dwindling. Mami and Dad were scheduled to fly down from Boquete to Ciudad de Panamá to meet with Mami’s oncologist because the blood work results were getting dicey again. I decided to join them.
I had seen my mami in January and she had looked more fragile, been more emotionally vulnerable than ever, but still lively and engaged. The mami I met at Hotel Plaza Paitilla, our ‘home base’ in Ciudad de Panamá was grey, exhausted and also somehow, clear-eyed. She had had enough. The purpose of this round of doctor visits was to advise them she was done with chemo and ready to move into palliative care.
The first doctor we saw was her neurologist, the person who first figured out my mami’s cancer had metastasized. It was an amazing moment, to sit next to the woman who had been so strong and unyielding in her effort to help me through the childhood challenges of a bum hip so I might have ‘life abundant’. Now, I heard that strength and determination in her voice as she told a middle aged woman doctor that it was time. Dr A. responded in the most respectful, supportive way imaginable. She had no fear in her voice as she applauded my mami’s decision. She made it clear that if my mami needed any further consultations with her, she would be glad to help. And then, she stood up, along with us, came around her desk and hugged my mother, told her how glad she was to have worked with her, and said good bye. No candy coating, no pretend like, just the quiet and freeing truth that it was OK for my mami to say her body was too worn out to withstand any more chemo.
The doctor who my mami had become profoundly attached to was her oncologist, a much younger woman who’d just returned from Australia where she had attended a world congress for oncologists, who, throughout the time she worked with Mami was always on the lookout for any new possibilities for therapeutic intervention against the cancer. My parents had gotten close enough to her that Dr. P travelled to the town where my parents lived when my parents celebrated their 50th anniversary. Encouraged by Dr. A’s response, I went into that second appointment filled with peace, in awe of what was unfolding. My dad and I sat on either side of my mami, each holding one of her hands. Those hands had become bony little birds, lying weak and tired; I was filled with dread that if I squeezed even a little, I’d break a cancer-riddled bone.
My mami had a carefully prepared little speech; she’d already practiced with Dr. A so it came even more easily with Dr. P., whom she cared for so much. We had all been looking at Dr P as Mami told her about her decision, and then Dr. P gave her response. “Pues no, Doña Anita, yo quiero seguir peleando”—Sorry, but no Miss Anita, I still want to fight.” There was a window behind the doctor’s desk; I could see a tall building as I turned to look out; relieved, I began to count the windows, one by one, floor by floor. Count. Breathe. Be quiet. Count. It’s going to be OK. Count. Breathe. God d%&n. No—you can’t go there. Breathe. Keep counting. Don’t stop counting. The adrenaline pinged through my body, I felt my chest about to explode, and the room got claustrophobically small.
Mami seemed to draw further into herself and now, all the confidence and clarity was gone from her face. Instead, there was this struggle back and forth between unexpected hope, confusion, and the exhaustion that could not be wiped away by the thin and false thread of optimism offered by Dr. P. My mami’s voice became hesitant as she said, “If you think I can have more time, you know so much more than I do. Yes, I’ll do what you recommend”.
Me? Inside my mind, I turned on my mother. I wanted to shake her, disrespect her even more than her doctor just had, strip her of her dignity by yelling, “Mami, that is the craziest thing I’ve ever heard you say! It is your body, not Dr. P’s. It is your choice, not hers. Think about Dr. A’s response and how meaningful that moment was. This is a travesty and I am about to reach out and wring this woman’s neck!” I thank God for the strength I dug out from down deep to sit quietly, to let my mami have the conversation she needed to have with the doctor she’d entrusted her life to 5 years earlier, when the metastasis had been discovered.
My father and I talked a few times during the next 24 hours, struggled to make peace with something that seemed to go against all the brave work my mom had done; it is a fearsomely courageous bit of agency to say, “I will now allow myself to die.” We shared our horror. Our dismay. Our anger. My mother only had the strength to sleep, and wake for short periods of time, distracted and distant. Plans were put in motion to go return to the city a couple of weeks later to start the new line of treatment.
Then it was time to leave. My parents headed back home in the morning and I had a late afternoon flight back to the USA, so I was able to go with them out to to the airport where they’d take a flight to David. I watched my dad wheel my mami into the security area, her body so thin and bent over now that she was lost, almost swallowed up, in a wheel chair.
I had scheduled a deep tissue massage in Fort Lauderdale for when I returned from this trip, and I kept the appointment the next day. Never before and never after, have I experienced a massage where every single place in my body the massage therapist worked on hurt, and hurt excruciatingly.
Away from Dr. P, my mami regained the clarity she’d lost in that sterile office, filled with books and magazines, and charts and pharmaceutical samples but little humanity. She did not return to Ciudad de Panamá. Mami died some weeks later, in early June. During the two weeks I was with my parents before her death, the neurologist, Dr. A called 3 times to ask how my Dad and I were doing and check on my mami. At one point in those final days, we tried repeatedly to reach Dr. P because the local doctor needed to check something out about my mom’s last round of chemo as he perscribed palliative meds. Dr. P never returned our calls.
Here is some more of what I learned that awful week in April: I was a tiger ready to pounce on anyone who messed with my mami. But sitting in Dr. P’s office, I had been ready to snatch away all my mom’s agency, her ability to make the decisions that worked for her, because I thought I knew what was best for her. It was my mother’s life and death, not mine. I am grateful for the grace that made it possible for me to sit quietly through that meeting, be polite to the doctor, lead my parents out to the cab that was waiting for us.
My mami, even as she was dying, had the strength and wisdom she needed to honor relationships that were hers, not mine. But it was important and a part of me honoring my relationship with my mami to talk about the beauty of the meeting with Dr. A., to reassure my mom that we’d follow her lead, do whatever she decided.
One of my dearest friends is walking towards that kind of hard place with her own mama. As one who’s already been in similar places, I think I know a bit about the confusion, the warring hopes, fears, needs, the sheer mind-numbing volume of decisions, large and small, that are hers to make now. I don’t think it’s perverse of me to see this as a time of deep holiness in my friend’s life. I don’t regret for her that she finds herself in such a place. Walking with my mami tempered me. Made me have to go deeper to find the living waters and in the process, stripped away a lot of games and half-truths I had clung to in the past. Those days, and the weeks that followed, gave me a connection with my mami that neither angels or principalities, or things present, or things to come, or life or death, will ever break. I pray for such a gift for my friend.