How I Answer My Question

Love, Grief, and Being Present

I was left feeling like I had gone five rounds with Muhammed Ali without any training. I was knocked out and left dazed, bruised, and beaten. In a matter of four months, my husband and my sister both passed, and my daughter had a cancerous lipoma removed from her thigh. Yet, I crawled to my corner, got up on my stool, and my team arrived to tend to the damage. They saw the outside damage: the crying, the weight gain, the pulling away, but not the internal damage to my heart, soul, and mind. I carefully hide the internal hurt. I think of it as a disease, and I don’t want anyone else to catch it.

In January 2021, my sister Lynne was diagnosed with cholangiocarcinoma (bile duct cancer). She looked it up online and was convinced she only had a few weeks or months to live. I packed up a suitcase and drove to be with her. I told my husband he was alone for a while, and I kicked my brother-in-law out of their room. I crawled into bed with my sister, and we lay there telling stories and being weird. I stayed for three days until she was ready to get out of bed and tackle the disease. Lynne still believed she had little time left, so she started giving away her belongings. I was with her every few days, and during one visit, she gave me some jewelry, clothing, and her favorite beach hat. I didn’t want to take these things and told her she would be sorry as she would live long enough to want them back. But she insisted, and I couldn’t refuse my yellow sister (who was yellow due to bilirubin buildup from the blocked bile ducts). I was scared. The thought of losing her was overwhelming. Yet, true to my past, I became quiet and “the good” sister. My niece, nephew, and brother-in-law needed me to be positive, and so I took on the role of the strong one. I had access to Lynne’s medical records and would research test results as well as treatment options. I attended most of her doctor appointments via FaceTime or in person. We began to FaceTime with each other every morning. These calls were our lifeline to each other. The calls would begin while we were still in bed. They continued through our bathroom routines and, at times, through breakfast. We gossiped, we joked, we reminisced.

As I Googled and combed the internet, I found the Cholangiocarcinoma Foundation site. It was like finding buried treasure. The information it provided was invaluable to me and thus to my sister and our families. I think I printed just about everything on the site and used it as a guide as we investigated what was happening and the options available.

The first thing the doctors did was place stents in her bile ducts to clear the way for her bilirubin to exit her body. Yellow was never a good color for her. The stents worked like a charm, and her normal color returned. Lynne’s first round of chemotherapy was a failure, and her tumor grew. I was so scared and useless, but I kept my brave and positive face in front of everyone. The doctor who put in her stent discussed performing a procedure called a Y90. They would map the veins feeding the tumor and then fill them with radioactive material to close the veins, stop the tumor from growing, and possibly shrink or kill it. Lynne had the first of these procedures, and we waited for a few months to see the results.

Waiting is the hardest part. What to do while you wait? We visited. We shopped. We talked. We went on road trips. My sister lived every day with as much gusto as she had. I was happy to see her out and about. Lynne even asked for her favorite sun hat back in the summer of 2021. I happily gave it back to her. Yet I could see and feel a black cloud hovering above her head, ready to pour rain, sleet, snow, and hail all over her. The reports after the first Y90 were great. The tumor had shrunk slightly. The doctors would start another round of chemo with different drugs.

So, we waited. The second try at chemo was another major failure. The tumor started to grow again. We are now about a year into her cancer journey, and it was decided to perform another Y90. This procedure was a true success and the first scans after the Y90 showed no signs of disease. The tumor was dead. Relief flooded over all of us. We celebrated at Lynne’s retirement party. I had told her that I would take her anywhere she wanted to go in the world when she was pronounced cancer-free. We announced to everyone in June 2022 that she and I would be taking the cruise of a lifetime, hitting Greece, Italy, France, Istanbul, and other ports, and we were going first class! We made reservations for May 2023.

Our happiness lasted through the summer. Lynne was thin but shopping again for clothes that fit her. In the Fall of 2022, she began to exhibit signs that the cancer was active again. She was tired all the time. She was not eating. Our phone calls continued but took on a different tone as my husband, Bob, went in for bypass surgery on October 6, 2022, and my daughter Jessica was diagnosed with Liposarcoma. She had a huge lipoma on her inner left thigh. Life was surreal. I felt like a long-tailed cat in a room full of rocking chairs. I was constantly moving from one person to another, from one doctor to another, from holding one hand to another, and from one procedure to another. I was busy. There was no time for emotions. Who had time to cry? Not me. Trying to hold myself together and be the “good girl” was not working. I was now splitting my time, my heart, and my brain with so many life-and-death situations that I became irritable when people called to ask me how others were doing. If I gave information and they questioned it, I would become angry. I hardly knew up from down. I realize that over the years, I have created a belief that I am in control and can handle bad situations with ease and grace. People around me were surprised, and some were horrified. They didn’t understand. I was losing it. Whatever “it” was or is.

My husband, Bob, passed away on December 14, 2022, at 2:25 a.m. My brother-in-law and sister came to see me the day he died. I hadn’t seen her much in the last few months, but we talked every morning. Lynne was very thin and looked sickly. She lay on my sofa, and we just were.

My mind was numb. My heart was broken. I had just lost my husband. I couldn’t begin to imagine losing her. I became the “good girl” once again. My sister was so sick that I couldn’t burden her with my grief. It was easier to put my suit of “I’m okay” on and go about the task of the funeral than it was to feel the horror of losing my partner. When does grieving actually start? For me, it started when I lost hope after Bob’s second procedure. I started seeing my life alone, without Bob. I felt like a deflated balloon. The world saw my outer shell, you know, the suit of “I’m okay”. There was nothing inside. I couldn’t or wouldn’t feel any of the big feelings. I just got to work. Funeral arrangements, notifying people, and whatever else, I can’t remember.

In February 2023, my sister’s cancer was growing, and I made the hard decision to cancel our upcoming trip of a lifetime. I cried and felt I had failed to keep my promise to her. I was scared she would never be able to travel far away again.

In March 2023, we went shopping, her favorite thing to do. She had little energy, and I was sad and scared. I was scared to ask her if she was scared. I was scared to ask her if she was still hopeful for more time and a cure. I was scared to think of losing her, my little sister, my lifelong friend. Lynne developed an infection and ended up in the hospital around April 1.

I visited my sister almost every day. I didn’t know how to help her. Lynne asked her daughter, Katelyne, to make it stop. The doctors and nurses coming into her room had a look that told me she was dying. I can’t explain what I was feeling. The thought of losing my sister compounded the sadness and loneliness of losing my husband. I know there are lots of people around me who love me and are there for me, but all I could think of was what I was losing. April 8 is my sister’s birthday, but there would be no celebration. That night, Lynne was transferred to a hospice room.

The next day was Easter, April 9, 2023. I arrived when visiting hours started. Lynne was unconscious and on morphine. When the hospice nurse arrived, we had a long talk. I told her about my sister. She said it wouldn’t be long and then pointed out how my sister’s breathing indicated she was in pain. She upped the morphine. My brother-in-law and a very close friend, Darlene, arrived. I went to the chapel for Easter Mass, and when I got back, I stood by my sweet sister. I was numb. I decided it was time to leave. I said my goodbyes to Jack and Darlene, and as I stood by my sister and said goodbye, I will see you tomorrow. She then passed. My sister wanted me there. I was in shock. She was supposed to live longer than me. She was supposed to give my eulogy. I have never felt such a loss.

My journey with my sister was over. I was four-and-a-half years old when she was born and that was there when she left this world. My niece, Katelyne, and I both gave eulogies. I choked a few times, and some tears escaped my eyes. I was miserable. I felt Bob near me and broke down several times before, during, and after Lynne’s funeral. I didn’t know how to get through life without these two people. I was scared. I was on the verge of melting into a puddle of water and evaporating into the air.

How was I to handle all this sorrow and grief? The outpouring of cards, flowers, and phone calls I had after Bob’s passing were not there after Lynne’s passing. Of course, my children and friends were there for me. They called, visited, and kept me as busy as possible. I started to do different things. I took up watercolor painting, which distracted me. I prayed more and continued my meditation practice, which calmed my mind and spirit.

The toughest time of day for me is the morning. That is when I connect with my sister. I miss her every morning. I start my day sad and feeling her loss. The next hardest part of the day is the evenings when Bob and I settle down and talk. So, I begin and end my day sad and lonely.

There are days I cry for what was. Friends tell me to reach out, and I know I can. The truth is, sometimes, I need to feel the pain of the loss alone. I keep memories alive. Bob’s bathrobe still hangs on the back of the bathroom door. My sister’s beach hat greets me whenever I open my closet door. I talked to my doctor about the emptiness I feel inside. People tell me how strong I am and how well I am doing because they see me out and about. They don’t see the lack of joy in what I am doing. I smile, I laugh, I am depressed. My doctor put me on medication, which might help me feel the joy again.

After my sister’s passing, I signed up as a CCF mentor. Why? Because I know how lonely, scary, and confusing it is to watch someone you love facing this condition. I believe in hope, and I have faith in the research being conducted to find additional treatments and a cure. Until then, stay strong and spread love.

Today, it is 689 days since Bob passed, 573 days since Lynne passed, and 17,374 days (47 years) since my brother’s passing. I can still feel Bob’s arms around me as we dance. I hear my sister making horrible jokes about dying, and I can taste the wonderful desserts she made. The holes these people have left in my heart will never be filled. Their love made my heart strong enough to withstand the sorrow. My theme for 2024 is “rise up”. I get up every morning and answer, “Why?” with “I am not done living.”