What I Have Learned From Being a Twin Sister to Someone Who Has Cancer
Nothing prepares you for the phone call that tells you a family member has cancer, let alone the phone call that your twin sister has cancer. I have always had a hard time coming to terms with why her? Why not me? We were three years old when our mother passed away from VHL — Von Hippel Lindau Disease. VHL is a genetic cancer that causes tumors and cysts to grow on your brain, spinal cord, pancreas, adrenal glands, and reproductive tract. My mother when she was pregnant with my sister and I found out at an ultrasound appointment that she had over 30 tumors on her kidneys. The conversation went from having a successful pregnancy and normal things expecting mothers worry about, to can I live through this pregnancy? Can I carry them to term? Will I have to terminate? Through much research and persistence on her part she decided to continue on with the pregnancy. By doing this, she gave up her chance of survival, for the survival of my sister and I.
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Rexann (my twin sister) and I were born in February of 1996. Because we are twins and it is almost impossible to carry the full 40 weeks of a pregnancy, we were born about 2 months early. Myself weighing 3lbs and my sister 4lbs. We were in the NICU until April of that year. At that point my mom was dealing with two brand new twin babies, who are in the NICU, and her own health problems trying to start treatment to prolong the inevitable. Unfortunately, she would pass away on January 19th, 2000. One month before our 4th birthday.
Because VHL is genetic we knew at some point we both would have to be tested for the gene. This test came when we were 5 years old. At that time, I want to believe that we knew mom had passed away. And that we knew things were different for us, however I know we did not understand the gravity of the situation, that we were being tested for the same cancer that killed mom. Rexann had tested positive for the gene. I had to prepare myself that at some point during our lifetime she would get tumors and have to go through treatment. We were sophomores in high school when she went in for her normal 6 month check up, it was right before Christmas when they found a very small dot on her ultrasound. Smaller than the head of a pin. That is when my whole world just stopped. It was like right out of a movie scene where everything goes black and you have no idea what is happening.
I have always been over protective of my sister. I am more “tom boyish” if you will. I played soccer my entire life, I enjoyed working out, and being out doors. She was more theatre oriented and did a lot of plays and creative work. She was my person and I was hers. The news took me completely by surprise, not that she had tumors, because we knew this was going to happen at some point. But that we were still babies, children, barley in high school and now her main focus is fighting a disease instead of graduating, or going to prom. I wanted to be that person for her, that could bare all of her doubt, and negativity and just help her survive. I say this all the time, but to me she is everything that is good in the world.
A few months after diagnosis she goes in for her first surgery on her kidneys. At this point she has a few tumors on each. Instead of going in and cutting away that tissue, the doctors decide that freezing the tumors off would be best. It is less evasive and is a quicker recovery time. This first surgery experience was probably the worst thing I have ever endured. And I know that sounds selfish because she was really going through the same emotions as well, and I needed to be the strong one, but I could not let go of her hand. The doctors graciously let me walk back with her and wait while they prepped for surgery. I sat right there and held her hand and tried not to cry. All of my feelings and emotions with this cancer relate back to my mom. And all I know of the outcome of this disease is death, so in my head this was not just her going back to surgery, she will be fine and come back. It was, she’s going back to surgery and she may not survive this.
Well they took her back to the operating room and I was a nervous wreck. Sat in the waiting room just crying the entire time. I could not leave that spot because I told her that’s where I will be if she needed me. Well she comes out of surgery just fine, a little tired of course, very much on drugs. In that moment I learned everything I needed to know about how to be a twin sister to someone with cancer.
That night every few minutes I would wake up, rush to her bed side and make sure she was still breathing. She would move a single muscle and I was right there. I did not leave her side for anything. I would help as much as I could to take the pain away from her. From that moment on it was not about me, it was about her. Protecting her, making sure she had fun, making sure she graduated school, making sure she was happy. I felt like there was this responsibility to live every day like it was the last. To really soak in those small moments with her. It felt almost immediately like time was fleeting.
We are now both 24 years old, she graduated college and is working as a cardiology nurse. She got married and has a dog. Her diagnosis looks good, she got accepted to a clinical trial where it has actually helped and no new tumors to report. She has to have surgery every couple years to remove tumors that have grown. Her outlook is positive and I think from this entire experience I have learned that her strength is second to none. She is so positive and does so many things that you forget she has cancer, you forget about this terrible back story and our childhood. Being the twin sister to someone who has cancer is the most rewarding experience I never asked for. Through this diagnosis I have learned so much about myself and my own selflessness. I have been pushed to limits I did not know existed all out of the love for my sister. Being the twin sister to someone who has cancer requires you to love them a little more, support them a little more, lift them up, and be their person. Remember to live every day like it is the last and do not let your circumstances determine your future. She does this flawlessly.
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