A cancer caregiver reflects on a time when all seemed lost.
As we approach two years since my sister received her life-saving bone marrow transplant, I wanted to share a writing from when I thought it wouldn’t happen. From when all hope was lost and I was trying to reason with the reality that we were facing. My family and I are luckier than so many that despite her diagnosis and all the odds, she is here.
Having said that, I hope what wrote during that time may help others process through a similar experience.
I feel so alone. Stuck in a place that I have been before and a place that I want nothing more than to escape from. Yet I feel unable to move my legs no matter how hard I will myself to do so. Despite every want that I have, I feel as though I am not going anywhere.
I am afraid. Afraid of all that is to come. Afraid at how much harder life is going to get, when even now I struggle to make it through the day. We all love my sister, but unlike the rest, I have also been her caregiver. Because of this, the grief that I have feels so lonely. Nobody has been as involved and made the choices that I have. Losing her feels somehow different for me than it will be for them.
I wonder if others think this process hasn’t weighed on me as it has. Not because they are ignorant to the truth, but because of how I have chosen to carry myself. I get dressed every day and I am trying to keep a job through this. I try and have a smile on my face and sometimes I wonder if they know how much pain I am holding deep inside.
I know that others have been where I am. And just as with everything else about cancer, every journey is different from one person to the next. I care for my sister just as somebody else who has a sibling with cancer does. I have poured copious amounts of time and energy into doing my best to help save her. Even knowing that there was a slim chance that she would make it through cancer. And I have no doubt that anybody else would do just the same.
I am not religious in any sense, but there were times that I prayed. Tried to beg and barter anything in an effort to try and save her. To give her the time that she so badly deserved. A chance to gain remission and begin life anew. Nothing I did seemed to make any difference because despite it all, I sit here writing as cancer continues its assault within my sister. It is hard to accept that life isn’t fair and she will not be a survivor.
It is in these moments that I feel so lost. A mixture of grief, anger, frustration, bitterness, sadness and disappointment seem to consume me. Although she is not gone, it causes pain to think of the day that my sister will be gone. It confuses me as to why so many other adolescent or young adult patients will survive Hodgkin’s lymphoma, when she will not.
Was there something that we could’ve done differently? Were steps not taken to ensure that she would be in the incredibility high 87 percent survival category? When I try and be honest with myself, to remove the emotional component and turn to logic, I understand that isn’t how medicine and cancer work. As hard as so many fought, her genetics simply weren’t aligned to accept the cure.
And despite that logic, I can also say that it isn’t over yet. I guess in large part, this is where my faith comes into play. Because no matter what or how bad her diagnoses have been, I have vowed to never give up. As her sister and caregiver, it is my job to do as she asks. And at 28, she is not ready to stop fighting. So thus, neither am I.
For me, that means trudging ahead and knowing that the road ahead is unknown. Mysteries remain and no matter how badly I want to solve them all now, I need to be patient and learn from the past when making decisions now and in the future.
I know that I am not alone and human nature is to be idealistic. My life is unique in my eyes but I am no different than the rest. What I and my family are enduring right now is beyond what I ever could’ve fathomed. And I haven’t a doubt anybody who has had cancer in their life can say the same. And in that sense, I suppose that I am not quite so alone.