Role Reversal: Caring for a Sibling With Cancer

I will never forget the day that my sister was diagnosed. It is a moment in time that I write about in varying ways and quite often. I feel that only those who have lived through that moment will ever fully understand how that it feels. Every time a surgical procedure occurred, I was left breathless. As the doctors and nurses would tell me updates on her condition and try to keep me posted, all I could do was pace anxiously. As she was given each treatment, it was like a silent countdown in my head until a bad thing happened. It is sad, but it was also our reality for a very long time. When the time would come that somebody would show up with answers, I always had just one question for them: “Is she OK?”

When she is sleeping in recovery, I am always the most nervous. It is that moment of flux when, although resting peacefully, I have no idea what will happen when she wakes up. How will she feel? Will she be better or worse than when she went in? It is a time when clarity is a waiting game, and almost worse than when she is in the procedure room. The only reason it isn’t is because I am with her.

The truth is, she is supposed to be healthy. I know that cancer defies every “supposed to” statement of life, but for my sister, she is now nine months in remission. She isn’t supposed to be spending endless hours in clinical settings and countless days and nights in hospitals from falls that leaver her with scratches and bruising.

Before cancer, my sister was a markedly different person that she is now. Although my older sister chronologically, in so many ways she has always been my younger sister. Yet I often long for the person that I used to know. I wish that she could be a typical 29-year-old. Instead, she is affectionately nicknamed “the anomaly” and the rarest of rare things happen to her that most doctors struggle to explain.

Her latest enemy has become the progressive peripheral neuropathy that has left her incredibly reliant on others. We recently learned that she is growing weaker, far faster than anybody thought. Following her bone marrow transplant and a diagnosis of lymphedema, the neuropathy has become far more progressive than anybody anticipated. She often looks to me, but I don’t know how to explain what is happening now nor what may happen later.

How do I explain that no matter what she does, she may grow weaker and that all of these horrible things will most likely happen at some point anyway? That she should be doing all that is advised medically, even though it may not improve her quality and only take up the time that she may have left? That, at 29, her future will most likely include aides to walk for the rest of her life? That she will rely on braces, canes, crutches and wheelchairs to just be independent? Though being in remission was supposed to mean less clinic hours, time spent in medical facilities is only going to grow as she physically gets weaker with time.

Doctors have told her, but she doesn’t seem to comprehend what they have said. How do I explain it, when I haven‘t fully excepted what this latest diagnosis means? As they speculate, nothing is a guarantee. Someday, it is expected that she will lose the ability to walk, run or be on her own and be “normal” again and have the life she thought would post-cancer. I don’t know how to tell her that nothing has turned out like I’d hoped or thought that it would, and despite how hard everybody desperately tried and continues to try, there are some things modern medicine simply can’t fix.

While I have made many decisions for her and broken much bad news, I’m apprehensive about doing it this time. I don’t want to be the one to steal away the hope of normalcy — that glimmer of hope that even after all the bad, things could still be OK. In the past, decisions about her care were mine to make. Throughout so much of this, she’s been unable to chose best for herself. These choices though, need to be hers, not because they are easier to make, or because they come without consequence, because life is far different than it used to be. Although we can hypothesize and make educated guesses, none of us know how things are really going to play out. That is why even though difficult, these choices need to be her own.

In my mind, there is no way to fix the situation that she currently finds herself in. Since none of us can control what is happening to her body, she needs to have some sense of control in her life. She deserves the same chance as anybody else does at a “normal” life. At 29, simple choices, like how to spend her time, should be of her own choosing. Now, after all the decisions that I made and all the treatments that she endured based on guidance from doctors, she is the one living with all of the after-effects.

I am not ignorant to the reality that is set before us. The toughness and strength that is required to face this situation are not traits that she has displayed often in her life. I anticipate many moments of pain, not just for her, but for me as I watch her struggle. If there is anything I have learned in the last two-plus years, it is that all we can do is move forward and hope that where we are going is far better than the place we find ourselves in now.

Up until now, we had discussions with her only in the moments when it was critically important. I am not having her make these choices out of cruelty, nor am I throwing her in blindly to figure it all out. Much to the contrary, I have had much help creating a phenomenal team of doctors, nurses, psychologists, social workers and friends to help guide and support her. I am doing this because her choices allow her to get the most out of life and gives her the chance to breathe in fresh air and experience so much in life that she has missed these last few years.

Wherever the choices she makes lead her, and wherever she may want to go, I will be here. I simply want to give her the chance to find her own way on the next leg of her journey. It is the goal to leave the doctoring to doctors. As her sister, my job is to spend long nights watching chick flicks so she isn’t lonely in a hospital, be a bad influence on Saturday nights when she is lucky enough to be at home, order banana splits instead of lunch or to be next to her when she gets bad news. Not to be the one to give it. To put it simply, I am now choosing to be her sister.