Emotions of Cancer: Shock

Shock. The word is only five letters and one syllable, but it was a word that was repeated more times than I can count in the days that followed my sister’s diagnosis. Even though we had known she was sick and had come to suspect that it was, in fact cancer, it was still an incredible shock. For the word to be in black and white and for clinicians to say it aloud was different than I had played it out in my mind.

We had seen and watched her change. At first, it was a slow change, but as winter turned to spring the change was much more drastic. She was shockingly ill when she was admitted to the hospital on a hot July day. At the age of 27, she had stage 4 cancer and I was petrified.

But her team swore that even though it wasn’t an ideal situation, she was going to be OK. Although stage 4 and quite progressive, she had Hodgkin’s lymphoma and that was one of the most curable forms of cancers. While I know they were trying to provide both solace and hope in that moment, it was little consolation. My family and I remained in an utter state of shock from having heard that she was so sick.

I struggled as the family tried to wrap our head around the situation we were in. It took many consults and a considerable amount of time to fully absorb that what was happening was reality and that after months of the speculating, we now had the answer as to why she was sick. It mattered little because despite my every wish, this wasn’t just a nightmare I could wake up from.

That first night in the hospital, I stayed with my mom and sister. I stayed awake writing and thinking. As the sun rose, doctors began to stream in and out. They gave opinions and shared ideas as to what the next steps might be. I didn’t really know what else to do, so I listened. I tried to pay attention because everything was so new and I tried to absorb it all. I felt like we had missed so many things prior to the diagnosis so until I knew what was important and what wasn’t, I tried to memorize it all.

When she had her very first complication, it was like starting all over again. She was given a baseline chemotherapy and very few other patients reacted. Most who did were elderly, and so it was a shock. I reverted back to many of the questions that I had pondered on that first night. What now? What if it didn’t work? Was she going to die? That frightening question was one that, as a family, we faced many more times in the years to come.

I can remember many times when I couldn’t breathe, both due to anxiety and the literal sensation of suffocating. I hung on every word spoken during consults and every word on a dictation was analyzed numerous times over. It isn’t a place I thought I would ever find myself, but a place that I became adapt at being in. I would even go so far as to say it’s a place that I came to thrive in.

Despite how shocking it was, I wanted to know all the details. Of all the times that a doctor came to speak to us, there is one day that still stays fresh in my memory. It was a late spring day when two of her nurses came into her room and her oncologist followed close behind. I had a gut feeling that her latest PET scan had been bad by how long the results had taken. I already felt breathless when the nurses entered and as the words left her oncologists lips, it took every fiber of my being to not lose control.

As he spoke, I looked at my sister with tears streaming down her face as her nurse tried her best to console her. I was so full of emotions, but most of all I was shocked. How was it possible that after all this time, she still wasn’t better? Or even getting better? She had been given three different treatment regimens. This was supposed to be one of the most curable cancers, and yet cancer was still winning.

He finished and asked for a private consult, but I needed time. I ran out of the room and lost it, out of the sight of my sister and in the arms of another nurse and CNA. I was beyond stunned, and disbelief consumed me. We had received bad news before that day and would receive much more after that day. Looking back, I am still not sure what about that day made the news so hard, but for whatever reason, it was as shocking or more shocking to hear than initially hearing about her diagnosis.

I spent that night with her, but when I went home the next day, I still wasn’t able to think straight. Her oncologist had one option left but it wasn’t one she wanted to try. This left quite a predicament because my sister didn’t want to stop treatments, but also didn’t want the one being offered. In the end, we did dose the medication, and like every other treatment that came before it, she had a reaction and it was discontinued.

As each treatment failed, it was hard to maintain hope. Leading up to her fifth bone marrow consult and enduring years of the unknown, I knew the answer was finally going to be yes. I made the choice to not tell her because even though I knew it was going to be yes, I was still admittedly nervous. After everything, it was shocking that she was seemingly finally on the other side. Despite how dangerous it could be, this transplant could save her life and she could gain that ever-elusive remission that everybody had spent years fighting for.

Some of the phrases and words used when my sister was diagnosed created distress and confusion throughout her journey. So, as I share our story, I am quite cautious of the phrases and words that I use. Shock though, that is as word that I have continued to use. Because even though I lived it and I know what happened is a reality, it doesn’t make it any less shocking for me than for somebody who is now hearing it secondhand.

Where we are today and how far she has come is something that, at times, I did not think possible. So many nights were spent hoping that she would make it to tomorrow, so imagine my shock that I can say she is now 632 days in remission.