A friend of mine told me about a way to distinguish between two types of cancer. There is ‘cansah’ said in a up inflection and ‘cansirrh’ with a heavy tone.
‘Cansah’ is a one time thing. It follows a linear pattern, that takes a patient from diagnosis, to treatment, to survivorship and eventually it all becomes a distant memory of, ‘hey remember that time you had cansah’.
‘Cansirrh’ is the opposite. It can lay dormant and then reappear in a new location. It can become a completely different type of cancer that have the doctors scratching their heads. ‘Cansirrh’ carries with it the terrible fear of one day hearing the doctor say, ‘you may want to get your affairs in order.’
People tell me all the time that I will be fine. How I hear that word ‘fine’ also depends on the inflection. A friend of mines husband didn’t quite know what to say to me but I could see by the intake of breath that he felt he needed to say something. He put his hand on my arm looked me straight in the eye and slowly said “You’ll be fine”. It was perfect. I felt loved and I believed that he wanted the best for me. The down inflection on the word fine gave it weight and seriousness, showing an understanding that the journey isn’t easy but he had every faith in me getting there.
Then there is the other kind of ‘fine’. This one comes with an up inflection, is said speedily and often a with head cocked to the side. ‘You’ll be fine, my grandmother had breast cancer and she is fine, my neighbor had breast cancer and she’s fine” I call these people ‘finers’. The true test of whether or not I am talking to a finer is if they would use a more sympathetic tone if they knew I had period pains. They make breast cancer seem light and breezy.
This makes it virtually impossible to say anything but nod and agree that I will be fine. I feel like it also confuses the issue of being fine in the future and being fine with it in the present. I am not looking for sympathy but I do feel that walking around saying everything is up tone ‘fine’ is doing a disservice to all those other people going through this. I don’t want to have some one else have to hear in a breezy upbeat tone ‘my friend Tatum had it, I saw her during treatment and she was fine.’ My fear is that if I say anything contrary to a finer it will look like I am complaining or worse yet, that I would have committed the unthinkable crime a person with cancer can commit; not being positive.
I want to believe I have up-tone ‘cansah’ and that I will be down-tone ‘fine’. I have moments when I believe it completely and I have other times when I am petrified.
It is like being on one side of a beautiful field, filled with long green grass full of buttercups and daisies. In the distance are blue mountains, babbling brooks and adventure. All I need to do is walk to the other side of the field. I set off on my first step which is when I am told it is full of land mines. It is still possible to walk across the field unharmed but suddenly the ability to take each step is increasingly filled with fear. Especially when I realize other people are walking across the field and I can hear explosions.
Here are some things that to me sound like land mines
1.I read a particular treatment study of people with Stage 1 & 2 cancers. The study only accounted for 90% of the people. I was irritated about the missing 10 %, then I remembered, they had died.
2.Being in a Look Good, Feel Better makeup class for people with cancer and hearing about the woman across from me tell the group she was a 20 year breast cancer survivor. I was so happy to hear that great bit of news. Then she added, “I’ve now been diagnosed with ovarian cancer and I’m 56”. My math skills are usually bad but in this instance worked at light speed. She was my age when she had breast cancer and probably thought she had ‘cansah’. It hit me that the threat of cansirrh might never go away.
3.Everytime I hear “my mom died of cancer,” “my dad died of cancer,” and “both my parents died of cancer.” I wonder if my unborn child is going to say one day say one of those sentences about me.
4.My radiologist told me that if breast cancer returns there is a one in 4 chance of dying from it.
5.The days when it really hits home there are odds on my life for five year survival.
6.The nights when I lay in bed believing that I will be alright but remembering all the people I have met and heard about that had their cancer return, spread or be found in a new location. They are no different to me, there is no bubble of separation that keeps me safe, it is just random.
7.The moments when I speculate as to whether or not I have the BRACA cancer gene and I wonder what I will do if the test comes out positive.
8.When I think of the future and I hope I don’t have medical PTSD every six months while I wait for my breast and ovarian screening results. I hope I am not one of those people who suffer with permanent side effects of the chemotherapy.
9. When I hear about people who looked fine on the outside but underneath it all never got over the fact they had breast cancer. Never let their husbands see them naked, never felt like a whole person and never regained their self esteem.
I know that none of these things might happen to me as I journey across the field but I don’t want to go arrogantly charging across with a banner that reads ‘I’m going to be fine because I’m me and people told me so.’ I also don’t want to be paralyzed with fear. On some days I take a step while looking up at the beautiful sun and I feel great. On others I look down and am scared I might die.
Although I might not get to say it to finers, this journey is not up-tone fine. Although I want more than anything to hear, ‘Hey remember that time you had cansah?’