An online post about 9/11 sparked a conversation about whether we should "never forget" or whether we should "move on" from that terrible day. My argument was that the two are not mutually exclusive, they can both exist at the same time. My example was cancer survival. Many woman move on. They can never forget such an indelible experience which leaves such visible scars, yet they manage to put it in the past - it becomes a bad dream they remember once in a while.
Then there are those who don't move on; who daily talk, think, and live cancer - sometimes years past diagnosis and treatment. I'm not talking about those of us like me, who are in endless therapy. I am referring to women who were early stage, whose treatment is long past, and yet their cancer diagnosis becomes the defining moment of their lives; their identity. They are stuck in one moment in time.
That is understandable to me -a breast cancer diagnosis is a tornado that has attacked the very foundations of home, and nobody is taught how to rebuild.
What do I mean? Monday, a woman finds a lump. By Wednesday, she is diagnosed with breast cancer, details as yet unknown.
She is going to die, she's sure. By Friday she's learned there are types, sub-types, and more sub-types; she's floored to learn it isn't really one disease after all. In the coming days, she learns jargon such as HER2+, ER+ or ER-, Triple Negative, the TNM staging system, Oncotype DX, BRCA genetics. She must learn what a sentinel node biopsy does, statistics and odds about types of breast surgeries, radiation facts, differences in breast reconstruction. She's poked and prodded and thrown into MRI after CT, sees surgeon, plastic surgeon, oncologist and back again. She must make crucial decisions very quickly, ones that she feels unqualified to make based on information she didn't even know a week or two ago. She worries that it is life-threatening to take the time to become informed enough, so she dives in and spends days and nights reading about breast cancer: books and websites, forums and blogs. She reads journal articles with a medical dictionary by her side. Her life truly becomes consumed by cancer; it is a full time job at first, often with four or five appointments a week, and tons of homework. She's thrown into this cancer medical blender and can't get out.
Personally, she is bombarded with friends and relatives telling her about somebody they knew who died of her cancer, or giving her wacky alternative theories or sharing some diet they believe kept somebody alive, and now she has to research those as well. As decisions are made and treatment starts, she takes time off work and normality, and her world changes to that of statistics and odds, scrubs and nurses, medical offices and waiting rooms.
She is the center of this world, and all eyes are on her. Doctors take seriously every ache she describes, nurses focus on her, friends bring food, family comforts her and appreciates her anew. She's brave, admired, told she's remarkable and special, heck, there is even a special color just for her. She is no longer the mom in the PTA, she's the mom in the PTA who has CANCER, and is treated accordingly, either with extra kindness or with unwarranted avoidance, but whatever it is, she is now different.
Eventually, she relaxes and becomes part of the process. She knows by first name everybody in the medical offices, she makes friends with other patients. She learns she is not Stage IV, she is not going to die, not soon anyway. The terror lessens but doesn't leave entirely. It is comforting to see a doctor regularly, to know that medications are actively fighting cancer. She may spend a year being treated, or a few short months, but it doesn't matter, it's CANCER and it's her life.
Then her last therapy is over: the chemo bell rings or the certificate is handed out or her rads end or surgical staples are pulled. The long-awaited day occurs - she's finished. She's out the door. She's declared cancer-free. She's back to her old life.
And many women reel, not knowing what to do. It's like being dropped into another country with the same name as the old one, one that looks familiar but is no more. She is left with a mangled body, often with mechanical defects, body image and sexual changes, medication side effects, conditions nobody has told her would happen, She has a body that has made CANCER, that has betrayed her, and she doesn't know why and nobody will ever be able to tell her. And, it can come back, early stage or not, even years later. Many women enter a psychological prison of fear.
Fear of having to do it again, of it coming back locally or fear of it metastasizing and that she will end up like me, end-stage.
I am certain that many women who have been through cancer treatment develop a form of
PTSD due to the intensity of the experience.
But all she is told now, once therapy is done, is that she's a Survivor. She's given unhelpful phrases like "New Normal" and to figure it out on her own and get back to life with no details about how to do so. She doesn't know which aches and pains are side effects or leftovers from treatment, which could be cancer, which would have happened anyway (yes, cancer patients get normal-sick too). Nobody has explained that tamoxifen causes bone pain, that shoulder problems are common, that scans are frequently open to interpretation.
Friends and family, having watched helplessly by the sidelines, are ready for it to be over, and begin to get frustrated when it doesn't end for her like it does for them. She feels pressure to move on, but doesn't know how.
Many woman can do it; they can take a deep breathe and move forward and put cancer in the past. They jump right back into the pool of life, shocking and cold as it may seem. Many cannot, through no fault of their own. They dip a toe in and pull back, dip a toe in and pull back, over and over, never getting in over their knees; the fear is too cold, their heart races with each dip. Some women become stuck in a cycle of fear and appointments, fear and tests, the fear being a return of cancer and the tests are because the doctor must take complaints seriously. "With your history" becomes the catchphrase of her life. A cough? Probably the flu, but "with your history" they run extra tests, which send women spiraling back into cancerland, certain the result of
this test will show spread. Some women live that way for years and are either always miserable or have periods of calm and peace pierced with flashes of misery. "My back hurts. Is cancer coming back?" they wonder, even the day after falling off a ladder.
These women with early stage cancer sometimes write me, the dying one, to ask for help, that's how desperate they are. "How did you know it was back? How do you do it? How do you live with fear?"
It's a huge problem that the medical world doesn't address. In one of those many cartoonish brochures you receive explaining treatment options, there is usually a line or two about "woman may feel lost as treatment ends, but that is normal." and ..... period. Okay, it's normal.
Now what?
I really think there should be a post-therapy cancer class, so women can learn to identify when to be nervous, what to expect, and given tools to manage their lives after treatment. Included in this class should be physical therapy so women who have had reconstruction can learn that their body function has changed and strengthen the muscles necessary to avoid pain that may now be normal for them. It never fails to amaze me that they can remove a body part, split chest muscles in half, put an implant inside, and then expect people to have full functioning with no re-training in balance, or strengthening in other compensatory muscles. Many, many women suffer shoulder and back problems post-mastectomy - and most of them think for a while that it is cancer returning.
Yes, I am the terminal one, the women everybody is afraid of becoming. But still I understand what women go through. I only had a few months after treatment ended before being diagnosed with mets, and in hindsight, I was likely Stage IV from the beginning. But I didn't know that, and so I understand the nerves that come. I did not live in fear those months, on purpose. In fact, I was about to shut this blog up and go away and leave cancer, in all its forms, behind.
I cherish those months before I was diagnosed with metastatic disease. I look back on them as last vestiges of my thinking I had a future, with plans and dreams like a normal person. I miss the days when I could see something online and not think, "Oh, my friend will like that for Christmas, I hope I'm alive to give it to her."
I want women to cherish their time post-cancer too. Whether cancer does come back a year later or more likely never, they should love and enjoy their lives as quickly as they can. I don't want women to look past beauty to the fear. I want them to look past fear to the beauty.
I know they'll never forget, but I want them to move on.
In Part 2, I will have suggestions on how to accomplish this goal, and steps on how I had planned to do it.
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