Cancer Caregiving: A Journey of Self-Discovery

I'm writing my own chapter within a bigger story.

While cancer is an all-consuming event, the world does not recognize that to be true. Life continues to happen anyway. While my life has largely been about cancer these past two years, I am still a human. This is a snapshot of how my personal life has unfolded as my sister battled cancer. It is a struggle to focus on myself sometimes and to live a life beyond cancer.

For some reason, my sister always was admitted to hospitals on a schedule of sorts. She would see her oncologist on Tuesdays and be fine, but a downward spiral would begin on Fridays and culminate with her in an ER room come Saturday nights. Because of that, I got to know the emergency department staff very well. On Aug. 2, I took her in and we met a new nurse named Cadance. He was very kind, and by the end of the night, he asked if I wanted to grab coffee with him. I said no, because I did not want to date one of her care team. Knowing that no matter what happened, she would still come to the same hospital and I didn't want to change what was such a wonderful thing.

She ended up going in five more times before Oct. 9. Each time that he was her nurse, he would ask if I had changed my mind and each time I would say no. She had spent 11 long hours downstairs and once she was moved to fifth floor, I was exhausted. At the end of his shift, Cadance crept into her room and told me that I had to eat something. We went to the cafeteria and he bought us coffee. About half way through my cup he looked up at me and smiled. “So, this is our first date then?” I still maintain that he swindled me into our first date.

With her in the hospital for pneumonia during the majority of winter in 2014, I would see him often. He worked three or four days a week and we could be found in different waiting rooms throughout the hospital. We met before he worked, on his breaks and after his shifts. In March of 2015, my sister had her seizure. He took time off work to be by my side in what was then the hardest moment of my life. In late May when we thought she was terminally ill, he was my saving grace. I began to struggle with self-destructive behaviors and he rescued me from the depths of my own destruction.

In July of 2015, nearly one year after her diagnosis, we found out I was pregnant with our first child. When I questioned weather the timing was right, he told me, “It will be our greatest adventure.” Shortly after finding out I was expecting, he resigned at the hospital and headed to New York to train in flight nursing. Sadly, on July 25, I suffered a miscarriage. At this time, my sister had already spent nearly the whole month in the hospital and I had been upstairs with her when it happened. It came with complications, and I needed surgery. Numb from sadness and stress of not being with my sister anymore, Cadance once again flew in to save the day. He took a redeye from NYC to be with me before returning home when I was ready. After five days in the hospital to recover, I returned to my sister’s bedside. We both went home later that same week.

Although my sister was unable to receive treatment due to complications of Adcetris (brentuximab), she continued to bounce in and out of the hospital. In early October of 2015, Cadance and I came  to realize that the distance was too much and he made the choice to move home in November. Thrombocytopenia meant she was unable to receive her immunotherapy and would spend time at home. So he flew home for a weekend trip and we visited his hometown of Durango for a little getaway.

On Oct. 18, my whole world came crashing down. While in NYC leaving work, Cadance was struck and killed by a drunk driver. There will never be words adequate enough to explain the hole that has been left in my heart, or the loss that the world will never understand because of the special person that we lost that day.

In early November, I discovered that I was expecting our second child. I was thrilled, but a lot of secondary emotions were there as well. I was so excited to share a piece of him, a piece of us. But I was still upset that he would never get to know his father or grow up to know that man that I loved so very much. Nonetheless, it was an amazing gift and I was ready to embark on what Cadance had said would be our greatest adventure.

While I was trying to prepare to be a parent, I was also helping my sister to prepare for her bone marrow transplant. Most of December was spent downtown at Presbyterian St. Luke’s doing 12-hour day workups to make sure that her body could sustain a transplant. Christmas was a somber occasion without him here, but the optimism of her transplant and the joy of a new baby were hope that 2016 would be a better year than 2015 has been.

On Dec. 28, a routine doctor appointment turned into a waking nightmare, as I found out that I had miscarried again. I was beyond devastated. Knowing that it was a son to be named Flynn Alexander, I heard the heartbeat, saw pictures, and knew that I could not try again with Cadance. To add to my emotional state, the 31st, New Years Eve, was his 25th birthday.

To cope, I threw myself back into my sister’s care, and she was once again my sole focus. On Jan. 4, she was prematurely admitted with an infection to her triple lumen catheter and so we began the next chapter in her cancer story. After nearly a year of waiting, her journey of transplant was finally happening.

Together, my sister and I spent the beginning of the year in the hospital. On Feb. 18, I came home to celebrate my 25th birthday with my twin brother. Although it was predetermined date in time, it hit me harder than I had thought it would. Maybe it was because Cadance never got to be 25. Or maybe it was simply the fact that I realized how different of a person that I was than I was at 23, when she was originally diagnosed.

At the end of March, after many infections and complications, she was cleared to return home. A week later brought what would have been the due date for my first son. As much as my sister has been a great distraction for me, she has also been an excuse. With all this the stress in my life, I slowly reverted back to the same behaviors that I had previously been partaking in. Only this time, Cadance wasn’t by my side.

As many of you who are caregivers know, we put the one that we are caring for first. It is easy to see what they need and to do all that you can to accomplish that. For me, it is always easier to focus on her than it is to look within myself and try to fix me. It is also hard to acknowledge that I do need help. A lot of what I am going through is based upon my own choices. Whereas with my sister, she has little no choice when it comes to her illness.

Though a difficult choice to make, I sought treatment for myself this past spring. After so much time spent caring for somebody else, I realized that it was now time to take care of myself. As the due date of my second son was fast approaching, I knew that I had to change directions. I am still and will always be a work in progress. The important thing is that I am now working on it, when in the past, I was in denial and unwilling to do so.

As my sister continues to struggle with the after-effects of cancer, I, too, am struggling. It is very much a different struggle, but a struggle nonetheless. Beyond nursing, I am trying to figure out who it is that I want to be. Through this journey, I have been many things. A caregiver, friend, sister, daughter, girlfriend, teacher, volunteer and expectant mother, just to name a few. The identities that I have embodied will always be a part of me. They have made me who I am today. I could never go back to before she was diagnosed because I am not the same person that I was then. Now that she is in remission and she is discovering who she is, I am trying to do the same.