The Whole Chronic Thing
When I was first diagnosed with metastatic breast cancer, I wanted a second opinion. It wasn’t that I thought another physician would tell me that I was fine, I just wanted to hear another take on the whole thing.
So it was that I met George Raptis. He was wonderful. He bolstered the findings of my first medical oncologist and praised her to some extent, for given my presentation of symptoms and history he would not have chosen to perform the PET/CT scan that revealed my metastatic disease. And that is when I first remember hearing the description of stage iv cancer as a chronic disease. He told me the mean survival rates (2.5 to 3 years) and then went on to say that many women live with metastatic disease well in excess of five years. And, to that end, my cancer would be treated like a chronic disease.
When Dr. Raptis left for greener pastures and I met my new oncologist, she also used the description ofchronic disease quite a lot. So, too, did the dozens of women who attended the Living Beyond Breast Cancer conference for women with metastatic disease. The words just floated in my mind and never really settled anywhere. It was just a phrase. Just a beige description that made no impact. Until just a few weeks ago.
My favorite knitting nurse (you know who you are!) was preparing my monthly shot of Xgeva and my quarterly Lupron shot (the arrows in her quiver are painless). I have no memory of the specifics of our conversation, but I recall that as I bared my left cheek for the Lupron jab she said “after all, you have a chronic disease.” And the phrase finally settled.
It didn’t just settle. It grew barbs and dug in.
Chronic disease.
I mulled it over and over, the phrase tumbled in the cement mixer. The whole walk to the bus and the ride home was dominated by the thought. I don’t have a yeast infection, I thought. I have cancer! I didn’t like the phrase and started to take umbrage that people say it so casually. I had said it that way, after all. It’s how I described it to my family: no, I will never be free of cancer; I have a chronic disease. The thing is, telling my family that I have a chronic disease made me socially acceptable. It didn’t sound so bad after all.
Further, chronic disease makes this all so unbelievably doable on an emotional level. “I have a chronic disease.” It sounds so much better than “I walk around with a palpable cancerous tumor in my right breast.” I quite literally feel an honest-to-goodness difference when I verbally say “I have cancer” as opposed to “I have a chronic disease.” Indeed, I need to consciously force myself to say them identically, otherwise the final syllable in disease takes a little upturn in tone.
I know that if you take the time to look up the meaning of chronic it becomes clear that how ever I may feel about the word, its use is completely valid.
Further, consider the company we keep under the rubric chronic disease: Parkinson’s, ulcerative colitis, diabetes, epilepsy, and HIV–to mention but a handful of individual Hells. It’s just that in my mind, the phrase chronic disease describes the endless character of any disease in a way that makes it more socially and emotionally acceptable than these diseases are on their faces. It’s complicated because folks with chronic disease are often seen as the cause of their own circumstance and are often under diagnosed and under treated. In a very real sense I want to own the word cancer. (See Laurie Edwards’ book In the Kingdom of the Sick for a lengthy and informative discussion of chronic illness in an age where we are accustomed to being cured of disease. I reviewed the book in an earlier post.)
I do my routine: Letrozole in the evening, Lupron quarterly, and Xgeva monthly. PET/CTs quarterly–though this will soon move to bone scans and non-PET CTs. I drag my sorry ass to the medical oncologist every month. I’m sure as hell not doing this because of my chronic asthma. No, this is different. I have to make sure this thing stays in check and doesn’t start spreading to more bone or other organs. And, for me, that needs to be called cancer at all times. I am managing my disease, i.e., cancer.
I made it one year with MBC, but I see so many women with stage iv disease in worse shape than me. It brings on a guilt that seems ludicrous, but exists notwithstanding all the reasons why it shouldn’t. I mean, if you have completely run out of options it’s not chronic anymore, is it? It’s the end. It rips my heart out. We just lost Cindy Rose Phillips and Donna Peach, and Lisa Lynch among others. And so many more of our friends are fighting for their very lives right now.
No, suddenly I don’t like the words at all. Chronic disease somehow masks what is really going on. For good or ill, I have breast cancer. Stage IV breast cancer. And, you know, that’s okay. I just want to call it what it is in its starkest terms. I want to take ownership of that word: cancer. Chronic disease is just too good for it, considering the real hell that it is for so many men and women. Considering the real hell that it has been for me.
This entry was posted in My Stage IV Life, Social Commentary, Stage IV Musings and tagged advocacy, awareness, breast, breast cancer, breasts, Cancer Culture, chronic, chronic disease, Diagnosis, frustration, metastasis, metastatic breast cancer, Philosophy,Stage IV, stage iv breast cancer, stigma, Treatment, vulnerability. Bookmark the permalink.
xoxo
In contrast, I will most likely die of metastatic BC. I know my lifespan will be considerably shortened. I will be fortunate if I see my infant grandson start kindergarten. And the side effects of my meds give me hot flashes, a great deal of aching, insomnia, fatigue, etc.
Maybe the problem is they keep us alive too long to keep calling it terminal, but don’t really have a better term than chronic. But to most of us nonmedical people, we think chronic is asthma, arthritis, diabetes, epilepsy, not something that will probably kill us less than 10 years from now.
By the way, I agree with the term breast amputation. When people today think mastectomy, they often think of skin-sparing surgeries where the woman wakes up “reconstructed.” I even heard a “breast surgeon” interviewed (quotes because I really wondered) who talked about the skin-sparing and how most women can chose immediate reconstruction (really – tell that to all of us who were told we had to wait until after radiation) and this was the kicker, “nobody gets radical mastectomies anymore.” (I replayed the interview twice as I did not believe I heard it right.) Technically, she was right, it is now modified radical mastectomies. But, she never once mentioned them. Never once mentioned lymph node removal. Only skin-sparing with reconstruction. Not even a mention that even in those cases reconstruction is a long multistep process. Many of my friends were actually shocked that I would not wake up after surgery with a reconstructed breast in place! So maybe it is time to make people realize what mastectomy really is.
Words matter so much don’t they? There is this tendency in Cancer Land to constantly attempt to lighten things up or gloss over stuff. While I get that, it’s way too often a dis-service to the cancer patients themselves. Sometimes I think there is more concern for the non-cancer people. Hard to explain… I agree with Kathi about the mastectomy vs. amputation word choice. Yet another attempt to lighten up an almost still barbaric procedure… I’ve never really liked the term chronic disease either in regard to mets. Your post is perfectly written. You nailed it. Thank you.