amputation v mastectomy, Cancer 101, euphemisms, Fine Black Lines, Lois Hjelmstad, lymph nodes, nuclear medicine, Radical Amputation of the Left Breast (1930), resuming old ways, Sarcastic Boob, Sentinel Node Biopsy
This post includes a 1930 video of the Radical Amputation of A Left Breast. Viewer Discretion Advised.
I discovered the elegance of Lois Hjelmstad‘s poetry and prose in March 2012. Tentatively broaching the subject of my return to work, having undergone a mastectomy just 47 days earlier, I wrote in Resuming Old Ways of the final pre-operative surgical procedure – the administration of the nuclear medicine for a sentinel node biopsy to be performed the next day at some point between the removal and reconstruction of my right breast.
The pre-op procedure had been conveniently reduced to a specious “X” next to “Nuclear medicine” on the Surgery Scheduling Information sheet in my Cancer 101 notebook that is always at hand. Highly probable that my surgeon had already discussed the procedure with me and answered all my questions, but even at this late hour, I had not moved much farther beyond “You. Have. Cancer.” Thus, I showed up. Obedient and vaguely prepared with a stack of paperwork and disclaimers and a half-understanding that this nuclear medicine, a blue dye, would enable my surgeon to see if there was any cancer in the lymph nodes. If so, she would remove them all. Just like that.
Following the obligatory mix-up with the out-patient registration department, I proceeded into Nuclear Medicine, pausing to wonder about those who had preceded me through those double doors. A cheery nurse, diagnosed with breast cancer some years ago, told me it would be all over before I knew it. Encouraged and unaware that she had omitted the part about the procedure necessitating three injections of radioactive dye directly into and around the nipple of my right breast, I settled in. How I wince, even now, as I write of it. But more powerful than the sting of his injections, was the kindness of the radiologist who, right before he administered the medicine, said my name and told me:
I am so sorry you’re here.
I will never forget him for making enough time to make that connection with me as a human being who did not deserve to be there. No one does.
I published the post and was subsequently introduced to Lois J. Hjelmstad, who remarked:
“Along those same lines, I’d like to share a journal entry from my book, Fine Black Lines: April 19, 1991 – The doctor was gentle and thorough as he put the needle into my nipple, threaded in the tiny tubing and took x-rays. …The nurse kept her eyes on my breast. She said she couldn’t bear to look at my face. The ductogram was excruciating–but it was not conclusive. We will have to repeat the procedure next Friday.
And even though I haven’t had nipples for over twenty years, they still hurt when I typed that. I’m sorry you had to go through that procedure.
The irony is: that nurse has since died of breast cancer and I’m still here.”
Since then, it has been my privilege to learn more about Lois through her evocative prose and poetry. Finally, I bought her book, Fine Black Lines, yesterday. Another gift of poetry to myself. This 50th birthday celebration may just go on indefinitely.
In November, I asked Lois if she would write a guest post for my blog. She agreed. In breast cancer culture and in the medical community, there is a collective willingness to use language designed to soften the blow and a preference for words that sanitize and trivialize. Made-up words and euphemisms are flung around in myriad ways to minimize the savagery of the disease. “Mastectomy” is code for “amputation.” The latter makes me shudder.
Why are euphemisms so acceptable in the cancer conversation? Medical euphemisms, like “lumpectomy” I used to toss around as though it were like lancing an inconsequential wart, instead of what it really is – a partial amputation. The surgery to remove my breast and reconstruct would be trickier than the “simple” lumpectomy I had anticipated. In fact, as her meticulous notes would later confirm, “dissection was very difficult given the very small circumareolar incision used for the skin-sparing mastectomy.” Because it required additional time and effort, not to mention skill and patience, my surgeon recommended (and I nodded sagely as though I knew what she was talking about) a skin-sparing mastectomy which entailed removing only the skin of the nipple, areola, and the original biopsy scar to create an opening through which she would remove the breast tissue. Duly spared – spared, no less – the skin would then accomodate a reconstruction using my own tissue. Simple.
Reading through the details of my surgery, you’d never know cancer and its treatment could be ugly, savage, or even that it might hurt. At times it sounds downright regal, befitting a fanfare of trumpets, especially that climactic moment when my breast tissue is “elevated off the pectoralis and delivered from the wound.” Amputated.
GUEST POST: DAY 14 WEGO HEALTH ACTIVIST MONTHLY WRITING CHALLENGE
“Well, yes, Lois Hjelmstad had written an occasional poem when life got intense, but she planned to continue teaching piano until she was 96. And she definitely planned to reach 96.
Life changed her plans. The night before her first mastectomy, Lois wept as she wrote the poem, “Goodbye, Beloved Breast.” She did not know, of course, that the poem would lead to an award-winning book, Fine Black Lines, or that the book would lead to a national and international speaking career and to two other award-winning books.”
Perspective of a Double Amputee
There seems to be renewed discussion in the blogosphere about the language of breast cancer, specifically comparing “mastectomy” with “amputation.” The recent Sarcastic Boob blog and comments are especially succinct.
At the end of this blog, Scorchy posts a black and white film from the UK in 1930 depicting a breast removal surgery.
Viewer Discretion Advised: “Radical Amputation of the Left Breast.”
As I was born in 1930, it particularly caught my eye. Scorchy did advise viewer discretion, but, curious as I am, I decided to watch it anyway. I made it to the end, past the stitches, but I could not eat dinner.
It took me back to an afternoon in 1993, when I was revising Fine Black LInes: Reflections on Facing Cancer, Fear and Loneliness. My editor and I sat in her cluttered office and discussed a poem I intended to include called “Second Surgery.”
I have looked this way
Strange it is to seem
a sexless child
(Too bad about
the graying hair
and slightly sagging chin)
(Excerpted from Fine Black Lines, ©1993, 2003 Lois Tschetter Hjelmstad)
My editor looked at me over her reading glasses and said, “I sense your feelings about all of this might be deeper than you are expressing. ‘Second Surgery?’ This poem should be called ‘Double Amputee.’”
Double amputee?! I was shocked. It had never occurred to me that my mastectomies were actually amputations. I didn’t feel comfortable with the word. It sounded way more serious than what I perceived I had endured, although I have to admit that my perception changed when I watched that damn film yesterday.
Again quoting from Fine Black Lines:
I rushed to the dictionary to learn that amputate means to cut or lop off, but that amputee means one who has had a limb amputated. In discussing the definitions, my editor and I thought about the historical reasons such a distinction might exist. Amputee seemed to reflect men’s experiences.
Undoubtedly, men have suffered more loss of limbs than women, if for no other reason than men have been involved more directly in war. [That has changed, of course.] And men have had more accidents because they have been allowed and expected to be more active. But the restriction of the termamputee to limbs belies not only the broader use of amputate but also the psychological truth of cutting off a breast.
I took the idea to my breast cancer support group for discussion. Most of the women were horrified to even consider that their mastectomies were amputations.
Then we talked about how our culture has viewed breasts and how form has replaced function in much of Western Civilization. And even as we argued that losing a breast could not be compared to losing an arm or a leg, some interesting questions arose:
- How long did women have to fight for the right to choose a modified radical mastectomy over a complete radical mastectomy, let alone a lumpectomy over either of those?
- How many women walked around disfigured or with a falsie on the loose before an adequate prosthesis was invented, let alone breast reconstruction?
- How important is it to have our bountiful bosoms restored?
There are obviously different levels of amputation. Losing an arm or a leg generally has far greater consequences than losing a finger. But an amputated limb can be replaced with a prosthesis that allows some functioning. In fact, people have been fitted with artificial limbs that allow them to ski, bicycle, or even climb rocks. [And there is much more sophistication now in 2013.]
A breast, of course, can also be replaced with a prosthesis or reconstruction. However, neither of these simulates any natural functioning. If you are young when you lose a breast, you lose the ability to nurse a child. [If indeed you are lucky enough to have a child after breast cancer.] If you are past menopause, you lose the artifact of that experience. In either case, you lose the contentment of cradling a child to your bosom and the pleasure a breast brings to you and your mate during sex.
A prosthesis or reconstruction is only superficial. It looks good—score one for beauty pageants—and fills a void in your clothes.
If I had to choose between losing a breast and losing an arm or a leg, I would sacrifice the breast. But that awareness does not contradict the fact that I am an amputee.
(Excerpted from Fine Black Lines, ©1993, 2003 Lois Tschetter Hjelmstad)
I wrote that passage TWENTY YEARS AGO and people are still using the term “mastectomy” to cover up the truth. Everyone should watch the old black and white film from the UK.
Lois Hjelmstad is an international speaker and the author of three award-winning books:
Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness – brings courage, comfort and joy to those dealing with breast cancer – patient, caregiver, family.
The Last Violet: Mourning My Mother – provides hope and healing to anyone who has lost a mother or wants to improve her relationship with her mother.
This Path We Share: Reflecting on 60 Years of Marriage – enlightens, encourages, and inspires any couple who wants to build, maintain, or recapture a successful marriage.
- Lois has spoken more than 600 times in all fifty states, England, and Canada, in many venues including CEU and CME for healthcare professionals.
- Hjelmstad was featured in the October 2001 issue of Rosie Magazine and appeared on The Rosie O’Donnell Show.
- She and her husband of sixty-four-plus years, Les, live in Englewood, Colorado, where she taught music for forty years. They have four grown children, eleven grandchildren, and eight great-grandchildren.