My wife Lillian Venezia was 56 years old when she passed away, one year younger than I am today. That was 8 years ago. She fought her breast cancer for 11 years, beginning with a modified radical mastectomy, an implant, an expander and intensely brutal chemotherapy. She lost all her hair the first time around. But before she started the treatment, she had her three daughters take turns cutting her long curly hair. She bundled a long lock of black curls for each of them and tied them with ribbons. She wanted them to have a part of her that was pre-chemo, the part of her that was there when each of them were conceived and born, like the rings of a tree, a marker of sorts. Plus, it was her way of preparing them for the change that was about to happen. For it was inevitable. Cancer is usually a one way ticket and she wanted to start the journey by preparing her children for changes that were coming. She was incredibly brave.
Lillian was ferociously strong and determined. She was one of those amazing nurses that became the center of her universe. When I speak about her I say “she was one of those super uber-nurses”. She began her nursing career on the oncology floor when AIDS first hit NYC. This experience formulated her career and she became an visiting nurse for VNS of NY, being one of the first to do home infusions of AZT, the HIV drug that changed the course of the epidemic. She continued doing home visits, caring for not only gay men, but the IV drug abusers, the ex-prostitutes, the ex-cons; all of them struggling with AIDS and addiction. She was one of the first to employ HARM reduction to her patients. But she also treated their family’s struggles with poverty, health insurance, and other social needs. She met them at their worse and they saw her as the mother they never had. She was a force to be reckoned with.
She worked up until the month she died. When the disease reared up after a 10 year exodus, she would keep working despite the weekly chemo treatments. By this time she had gone back to school twice and earned her Nurse Practitioner Masters Degree in Adult Health. She would eventually earn her Psychiatry NP as well. The week before she died, she was in her office seeing her psych patients, patiently writing refills for her patient’s anxiety, depression, hypertension, diabetes and cardiac medications. She was a supremely compassionate professional.
Cancer is unique in its ability to either destroy or solidify a marriage. I wish I could say it did the latter for us. From the day of her first surgery, as expected, our relationship was challenged more than at any other time in our lives together. But to be honest, it wasn’t cancer that was the determining factor. Cancer doesn’t destroy or solidify a marriage, it is just the accelerant- the agent that catalyzes the underlying weakness in the relationship. More specifically, cancer magnifies those parts of the individual that needs fixing. And unless the individual is able and willing to see these imperfections and work on them, these broken parts turn into monsters that prey on the relationship, turning both people into bitter and resentful beings unable to support and nurture each other during the coming darkest of times. This was our experience. I was younger and more naïve than she. She was traumatized and more damaged than I. Cancer nestled in between us and metastasized into a giant ogre. We were married 11 years before the cancer arrived, and created 3 beautiful daughters. We were creating a beautiful world for them, but our inadequacies had already forged a rift in our relationship. It was too subtle for my naïve mind to pick up. It was too similar to the toxicity she grew up in. Cancer can either destroy or solidify a marriage.
On New Years eve, the eve of my birthday, she began vomiting. She had been well for the last 2 years after the cancer had returned. She had been tolerating the chemo well this time, no hair loss, less fatigue. Obviously it was concerning that she was feeling so ill, so I took her to Sloan Kettering’s urgent care which is dedicated to their cancer patients. She spent a few days there for IV fluids and antibiotic treatments. When she came home she resumed her normal work routine. She loved her patients and her practice, but they loved her even more; she felt she couldn’t abandon them. Lillian continued to work the rest of the month. But then on January 28th, while I was at work, she called me from Sloan and all she said was that the CT scan showed mets to the brain, and she hung up. I was an ER nurse in a Brooklyn hospital and was just midway through my 12 hour shift. I told the charge nurse I had a family Emergency and had to go. Our kids were old enough to be left home alone, so I went straight to the hospital. She was now in a bed upstairs, but when I went to see her, some dementia had already developed. She seemed to recognize me and understood what I was saying but was unable to really speak. When the medical team came down to see her, all she could do was look at them and smile.
The days that followed were a blur. I stayed with her all day but a friend came every night to bring me home so I could sleep. I also called her mother who lived nearby that her daughter was very ill. After a day or two her condition worsened rapidly and she began having seizures. They medicated her heavily to stop the seizures, and on the third day they had to stop the sedation so they could get a CAT scan of her brain. She became agitated again during the test, so the scan was cancelled. By the time the staff wheeled her back to the neuro observation unit, she had become so restless that she had to be sedated again. Her mother was at the bedside and was beside herself with grief and confusion. It was then that the medical team came to see me and told me that at this point her condition was terminal. The cancer had metastasized to her brain and bones and all that was left for her was comfort care. I broke down at the bedside as I realized my wife was going to die very soon. My experience as an ER nurse told me exactly how it was going to happen. I knew what I was in for. Later that day, I called my parents and told them the news and they made arrangements to come out immediately.
She was transferred to a unit that was to provide her hospice care. The next day I had our daughters come to the hospital so I could tell them about their mother. My parents had arrived and many of my neighborhood friends had come to the hospital to provide support. I tried my best to explain that their mother was dying and that there was nothing left to do for her but keep her comfortable. They were told they could go see her if they wanted to but not to expect any response as she was medically sedated. My girls were so brave and they each went into the room to say their good byes. I cant remember what I said, but friends and family have told me that it was perfect.
I spent the next 24 hours at the hospital at Lillians bedside, joined by her mother and my mother. Early the next morning, while we were all sleeping in the room, my mother woke me up and said Lillians breathing was very slow. I woke up Lillians mother and we were all present at the bedside. I held her hands and kissed her face as I sang to her our wedding song, “The nearness of you”. I felt so much love for her and was grateful for the life we built together. Overwhelmed by the fast approaching loss, crying, grieving, and singing, I was acutely aware of the immensity of the moment. I poured my heart into her. My love was given freely and totally for the last time. As I watched her breathe her last breath, with our mothers at her side, all of us mourning and crying, I kissed her for the last time.
Soon, the crying stopped, the staff were told, and I had time to reflect on what had just happened. Exhausted and bereft, I was surprised when I realized how grateful I was to have been there. Not just to be witness to this final event, but because I was able to give my love to her in the way I had always wanted to, but was prevented from doing so, because our brokenness allowed the cancer to drive a wedge between us instead of bringing us closer. Yet, I considered it a gift from a higher power, and I was grateful for it.
The memorial service was attended by so many family, friends, neighbors, coworkers, and even patients. She impacted the lives of so many people and the love they felt for her was tremendous. I was intensely grateful for the amount of support shown to me and my family, and to Lillian’s family. There were lessons learned as well from her passing and the remembrances afterwards.
It is a brave thing to be so vulnerable that you allow yourself to fall in love.
It is an even braver thing to look into yourself and see the broken parts that need fixing, and then fix them.
If you can support each other in fixing the broken parts of yourselves, then when life challenges the marital bond, and there will be many, you will be able to stay in the fight. And when you do, you both will come through it changed. You both with have a deeper understanding of yourselves, each other, and the bond will become ever more rich.
Love each other now. Show your loved ones how you care with actions. Allow yourself to grow into the complex, loving spirit you were born to be. And may you find that special other that will help guide you there.
