*I've received some news with regards to my cancer. This post is about that news but I have a few other thoughts so if you want to skip down towards the end, feel free but I'd really like it if you read what else I've written.*
So, you have cancer. You will be cured or you will die from it. Since the beginning of Western modern medicine, that has been the basic reality of most people who are diagnosed with some sort of malignant tumor.
Close to twenty years ago, my grandfather developed lung and throat cancer. He went through all sorts of treatments and surgeries. Eventually, they cut out lobes of his lungs and his parts of his throat. He died soon after that. Eight years ago, my mother was diagnosed with ductal carcinoma in situ (i.e. breast cancer). She had a lumpectomy to remove the tumor and then underwent radiation therapy. Five years later, she was pronounced cured.
That's it. There was almost nothing in between these two kinds of scenarios for a very long time. When I was first diagnosed with chondrosarcoma, I was told that a cure would be impossible in my case. The best they (the doctors) could do was to de-bulk my tumor and keep me out of pain for as long as they could, to the best of their ability.
I remember leaving the hospital after the oncologist sat me down and told me the news. With The German holding my hand, I managed to get to my car. As soon as I got inside and sat in the seat, I burst into tears. I sobbed and heaved and beat my fist on the dashboard.
How was I supposed to deal with dying? I was a mother. My daughter was just in elementary school. How could I explain to her that she was going to grow up without a mother? How was I going to get the strength to go through all of these treatments knowing that none of them could change the fact that this shit was going to kill me? My thoughts kept returning to all of the people I'd seen over the years as they quickly cycled through the stages of cancer and then died horribly painful deaths. Now that was going to be me.
After that initial shock, I began the process of dealing with my new reality. I decided that if I was going to have cancer, then I was going to be proud to be a person with cancer. I began to see it in the same way as I see being black, being a woman, being a mother. I joined a cancer support group and met lots of other people prognosed as incurable. I created this blog and met even more people who were living with their conditions. I had already been living with lupus and I had done some disability rights activism in college but it wasn't until the cancer came along that I really solidified my identity as a person with disabilities. I was no longer an occasional visitor into the world of the disabled living. Now, there was no escaping it, so I decided to embrace it.
That's where I've been for the past few years. Everything I witness and experience has been seen through the eyes of someone whose timetable is far different from that of my peers. How will I deal with retirement issues? I won't. That's how! Worrying about my family history of diabetes? Why should I?! Global warming? Well, at best, I can tell my daughter that she should be concerned about it but, as for me, my plan has been to enjoy these last few good years that this planet is probably going to give us humans.
However, it seems I may have to recalculate all of my ideas about the future. Earlier this week, I went and got an MRI. Yesterday, I took the trip to Mary Bird Perkins Cancer Center to see my oncologist so that he could tell me what he saw. The news was unexpected.
He came into the examination room and sat down with my medical records. He said that my scans came back good and my blood work looked okay as far as my cancer-related stuff shows. He said he noticed that I had been seeing him now for five years, so he went back and viewed all of my scans from the beginning. They look basically like the ones from this week. In other words, he doesn't see any change in my disease-state. At this point, he thinks that this is where things are going to stay. He can't guarantee anything because there just isn't enough data on my kind of cancer to tell what's going to happen. However, his view is that, at this point in time, I probably have a greater chance of dying in a car accident before I'd wind up dying of cancer.
My doctor, who is really a friend as much as he my care-provider, says that I need to start thinking about my options. I didn't understand at first but, he says, I need to start thinking about the future because I may well actually live long enough to have one.
So where does that leave me? To be honest, I don't know. My existence now falls outside of the two traditional prognosis paradigms. I'm still not cured but, in the oncologist's view, I am not progressing towards death from cancer. He says that he's most worried about my lupus at this point because, as I know all too well, it could also result in the same unfavorable outcome we've been expecting from my cancer (i.e. death).
What does it mean if I'm not dying from cancer but I'm not getting rid of it either? I think that everyone expected that I'd be gone by now, even the doctors. I remember one appointment with my surgical oncologist over at Tulane Cancer Center shortly before Hurricane Katrina/Rita. He had one of the medical students with him who was doing a rotation in the oncology department. He was a nice guy who had come from Germany to go to medical school in the U.S.A. We sat and discussed the differences between the European health care systems and the one we have here. The conversation was quite pleasant. He even tested me on how many words I could say in German. I failed miserably, of course.
Afterwards, the doctor started telling the student about my case and I could see his face drop as my prognosis was explained to him. The doctor tried to help the situation by saying, "Even though this is a difficult case, as you can see, Ms. (insert my name here) is dealing with it really well and always manages to keep a smile on her face through it all". I did my best to remain smiling but seeing the student's initial reaction really took the wind out of my sails.
That appointment is a prime example of how most of my doctors have tried to approach the topic with me. Each year I've been alive has been viewed as one year closer to my death from cancer. There were lots of reassuring talks when I mentioned my fears of being wracked with pain on my deathbed but nobody denied the fact that I did have to face dying from cancer.
But now I don't? Even my doctor doesn't have any answers about how to deal with this. In a way, my reality won't change at all. My body has been through a lot and I'm going to have to remain on my medications to manage the pain and neuropathy caused by the treatments I've received.
On the other hand, I have to consider what in the world I'm going to do now that I may have some reason to believe that my future may be longer than I've imagined for many years. My brother and cousin and partner are all very happy about this news but I'm having a lot of trouble processing it all in my mind. To be honest, it's quite scary. I don't understand this supposed new reality. Where does it leave me? Can anyone else help here because I don't even know who I can talk to that's in this particular situation?