As a 5 year survivor of late stage Ovarian Cancer I am often approached by family members of people recently diagnosed with a deadly cancer. I’ve been searching for an image of how it feels to be diagnosed with a deadly disease, and the best I can come up with is a barbell.
I was told I had aggressive, deadly cancer and my chances of survival were slim. Also, I would most likely recur after treatment and would then spend the rest of my life on chemo.
Being given this diagnosis was like being handed a 100 pound barbell and being told “you must carry this barbell all day, every day, for the rest of whatever time you have left”. Every moment of my life since my diagnosis I have carried that barbell. I wake up and within seconds I remember the barbell, and I pick it up. It is mine, and mine alone, and I will never be rid of it.
As the years have gone on the weight has changed. Side effects from chemo added 20 pounds during treatment. Long term effects have reduced that weight to 10 pounds, but that weight is a permanent addition to the barbell. Medical bills add tremendous weight to the barbell, as does the guilt that your family is sacrificing to keep you alive. Doctors appointments, blood work, medical procedures add weight. Hours spent in waiting rooms and treatment chairs add to the weight. These are the weights that are easy to explain to our families and friends. They can pick up these weights and see them. They understand how heavy these weights are, and sometimes they can help us carry this weight.
What they can’t understand is the weight of the intangible aspects of cancer. Fear, anxiety, depression and pain. These are the heaviest weights, because these weights can’t be shared, or explained.
Shortly after my surgery I had two ports put in. This was considered a same day, minor procedure; nothing to fear or worry about. This was not true. An abdominal port has a free form tube attached to it. When first put in, that tubing travels around your intestines, brushes against newly cut tissues, coils into spaces that used to house organs but now bled into emptiness. For hours the tube floats around, seeking the perfect space to settle in to. That first night home with my ports was hell. I felt like my abdomen was filled with shards of glass. All night long the shards tossed and turned, stabbing and ripping places I’d never even noticed before, let alone thought of. In a house filled with family I was alone, pacing the floor, quietly sobbing, trying to breathe in spite of the growing fear and pain. By the time my sister woke up I was drowning under the weight of the barbell I was now carrying.
My sister sat quietly at the table while I paced the kitchen floor, screaming about my pain, my fear, my certainty that I would not survive, my horror that I would soon die. I asked her questions no one could answer. Why me? What would happen to my children? Who would take my dog? How long would I be able to handle chemo before succumbing to this horrid disease? Why me? I’m not sure what she thought or felt as I ranted, but she handled it beautifully. She waited me out, and eventually I was too tired to go on, and I fell asleep. For a short time I was able to put the barbell down, and she carried what weight she could.
Unfortunately, our families and friends are often the ones who add the most weight to our already overwhelmed bodies. I suppose they are carrying their own weight; the weight of the fear of your death. Like me, they wanted to put down their weight, so they offered to me their weight in the form of help. Help were words, like
- you have to get a second opinion,
- you must change your diet,
- you have to drink green,
- read this book,
- my coworkers neighbors mother survived colon cancer, so you can do this,
- you must have a positive attitude,
- and more.
Help also took the form of meals I could not eat, company I did not want to entertain, activities I could not enjoy.
None of this was helpful to me. To the contrary, all of it added to the weight of my barbell. Each night I went to bed wondering if perhaps the advice of the day had been the one thing that might save my life. Each day I spent the day fearing I was not doing what I needed to do to survive, that I had made a deadly decision not seeking a second opinion, or not changing my diet. As I drifted off to sleep I pictured the friend who tried to spend time with me and I feared that my “bad attitude” would lead to my demise.
As the months wore on and side effects from chemo accumulated, the weight of my barbell became unbearable. Most days I spent laying in bed, unable to pick up the weight I’d been given.
Eventually I finished chemo and was declared NED. NED means No Evidence of Disease. To my family this meant I was cured. Hearing those words meant they could put their weight aside. They let out a sigh of relief and forgot the fear of the previous months. To their dismay, the same didn’t happen to me.
In the months following chemo my barbell certainly lightened up. Paying off the bills and cutting down on appointments took away 20 pounds. Reduced pain and increased energy took some weight. As my hair grew back and my legs grew stronger, my barbell seemed to become manageable. As the months wore on I looked forward to the day I could put the barbell down forever. That day never came.
Today, while a shadow of what it was 5 years ago, I still carry this weight. I am reminded of it every time I trip because my feet are numb from nueropathy. I succumb to the weight every time I feel abdominal pain, and fear of recurrence grows. Every time a friend dies from ovarian cancer my barbell shakes, and I wonder how much longer I can carry it. In the end though, I know I have no choice. With the words “aggressive, late stage cancer” I was given this weight that I will never be free of.
I’m writing this for those carrying their own barbell, and the people that love them. My message is two fold:
- for the patient, I know you don’t deserve this weight, and my heart breaks that you have to carry it.
- for the family, the weight is real and, not only can you not carry it, you must be careful not to add to it.
As a survivor I manage my weight by doing what I can to educate others. I talk about the vague symptoms of ovarian cancer, I share the diagnostic procedures and treatments, and I share my experience, hoping I might alleviate a few pounds from the weight others will carry.
In the end though, I know that the weight is real, and can only be carried by the person with cancer.