Cancer on our Calendar – guest post

A dreary wet Monday after a gorgeous sunny Sunday.  Being it is the second week of March though, I can’t complain.  Crocous have been in bloom for weeks now.  Tulips starting to bud.  Trees and bushes too.  It really feels like Spring.  But this evening I must return to work at the clinic where it is still a cold winter for some.

Today’s breast cancer blogger hails from the UK.  Yvonne has been penning her posts for a little over a year now.  I decided to include her “About me” profile as it is such a succinct and well written introduction to writing about cancer. You can find Yvonne at time to consider the lilies

About me now …

What about me these days? Given what I’ve read and what I’ve seen, I’m not that different from many who wander through cancerland.  I used to complain about the pace of life as a woman trying to play well the parts of mother, wife, and profesional.  Just months shy of 49  (a fact that shocks me), with no family history of breast cancer, and the “all clear” on my baseline and subsequent mammograms,  I was wholly unprepared to add the job of cancer patient to my curriculum vitae. Unprepared. Reluctant. Angry. Just as I was coming into my own last October, rediscovering the endorphine high from a good run, I found something. Not a lump exactly, but what my doctor would tell me was a distinct difference in my right breast. I would like to say I was doing my monthly self-exam, but that would be untrue, and apparently typical for almost all the women I know.  By 11.11.11 – the luckiest day of the year – I was dealt the diagnosis that deposited me in new land with a new lexicon. It is a surreal land where staging doesn’t have anything to do with the theater, where “if this, then that,” becomes an acceptable answer, where so much is accomplished on the count of 3; it is a land where visitors are likely to encounter the very best, most noble expressions of humanity along with the very worst.  This place was not on my itinerary.  I was busy at work, I’d finally figured out the importance of staying hydrated and eating green leafy vegetables. This cancer diagnosis simply had to be a mistake. I felt great! Just weeks before, I’d had one of those AHA! moments so cleverly co-opted by Oprah, and decided, based on my sister-in-law’s success, to go from couch-to-5K in nine weeks. More than that, I had even bragged on facebook that the 2012 Belfast Marathon was well within my reach. In retrospect, this must have given God a good laugh. While it shook me to my core, the diagnosis brought with it daily opportunities for think differently about my life and the people in it, to gradually learn the truth about breast cancer, and so to live better within a state of grey. With a nod to Gilda Radner, this “delicious ambiguity” is a collection of my musings on “the cancer.”  Too, it is a rebel yell for change in the conversations we have in this country about breast cancer.

cancer on our calendar

This relatively normal Christmas could have used the enviable scheduling skills of the Breast Patient Navigator.  The hustle and bustle of my favorite season has been overshadowed by interminable waiting for results of tests on tumors and saliva. By some miracle, the Christmas tree is up and twinkling in our front window. I even managed to resurrect my camera. I  forced our daughter to put on a winter coat (on a 70 degree day) and pose under a tree in the backyard. The effort and the eye-rolling was worth it, producing a seasonal picture which was hastily uploaded to shutterfly where the nice people there transformed it into a Happy New Year card and, for an additional cost, even mailed it to friends and family, far and near.

Christmas means lots of mail. Along with the greeting cards this year, are thick envelopes from medical imaging companies, the health insurance company, and different doctors’ offices.  On Christmas Eve, I received a Surgery Scheduling form filled out in in neat handwriting that brought to mind a worksheet completed by a student for extra credit. At the top, next to the date and time, two words jumped off the page. Simple. Mastectomy. On the same line. In the one breath. How could the two coexist? True to form, I headed to google and entered “simple mastectomy” and in a second found it separated by an “or” from “total mastectomy.” Not so simple. My mother agrees.

For 25 years, long-distance phone calls with the woman who knows me best, have required no effort, no brave face. Knowing she is on the other end of the line, I easily fall back into the rhythm of the way I used to speak. The colloquialisms of home are comforting and help counter the strange words that fly like bullets from the lips of surgeons. Worse than hearing and seeing them in print, however, is waiting for the new words that will invariably be added to this strange lexicon. And slightly worse than that is figuring out how to respond, without appearing mean or small, to well-intentioned encouragement from people who genuinely care for me.  Perhaps as I was, they have been conditioned to a culture where it has been acceptable to settle for emphasizing early detection rather than prevention; finding a cure rather than a cause. They cannot possibly know the silent rage I feel against this breast cancer that has taken up residence in our family, just in time for Christmas. But it feels wrong to say that out loud. So I am learning how to respond, without falling apart, when people tell me, “you’re so strong,” “you’ll be just fine,” “if you’re going to get cancer, breast cancer is the one to get,” “at least you caught it early,” “you’re so lucky – new boobs and a tummy tuck!”

I know now what to say when someone assumes I haven’t had a mammogram. I can point out that I’ve had three, and none detected the invasive cancer that has resided within me for perhaps a decade. A decade. Had I known at 38 that it might have been important to ask about breast density, perhaps our family would have been spared this “journey.” I can now, with confidence, tell other people that a mammogram is an imperfect test. Sometimes, as I deliver this news, I find myself having to look away, because I cannot bear to watch the shock spread across the faces of women dear to me, women who have placed all their confidence in a negative mammogram. Like me, some of them hadn’t realized or hadn’t ever been told that dense tissue may make cancer more difficult to detect on a mammogram.  I don’t know how to respond when people close to me say, “You’re a fighter. You will beat this. Deep down I just know it.” I find myself fearing what they would have said to me if, deep down, they just know I won’t.

This Christmas and next Christmas, what I want someone to tell me is that I’m not going to die soon. That I won’t be ravaged from the inside out by a disease I hate. I want to know what caused Invasive Ductal Carcinoma (IDC) in my right breast. I want to know what to say to my 14 year old daughter who has walked for a cure and pinned pink ribbons to her clothing, but whose own mother cannot tell her how to prevent this disease.

And so, if you look closely enough, indeed you will see the cancer in our gingerbread house. Within the papers in the envelopes that are stuffed along with utility bills and bank statements into a basket on the kitchen countertop; on our coffee table, it is splashed across the pages of publications hidden between Vanity Fair and The Pottery Barn catalog. All I never wanted to know about managing my life during and after cancer. Nothing about how I could have prevented it.

from: time to consider the lilies

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Cancer on our Calendar – guest post — 2 Comments

  1. you are better off not genittg tested, it is not really a reliable predictor of Breast cancer and a double mastectomy is very drastic for something that may or may not happen ..it is better to get your yearly exams and do monthly self Breast exams, immediately contact your GYN if you notice a suspicious lump or abnormalityDoes every woman with an inherited altered BRCA gene get cancer?A woman with a BRCA1 or BRCA2 alteration is at higher risk for developing breast, ovarian, and other cancers than a woman without an alteration. However, not every woman who has an altered BRCA1 or BRCA2 gene will get cancer, because genes are not the only factor that affects cancer risk.Most cases of Breast cancer do not involve altered genes that are inherited. At most, about 1 in 10 Breast cancer cases can be explained by inherited alterations in BRCA1 and 2 genes.Testing for Breast and ovarian cancer risk will not give you a simple yes or no answer. If a gene alteration is found, this will tell that you have an increased risk of genittg cancer, but it will not tell if or when cancer will develop. If an alteration is not found, it still is no guarantee that cancer won’t develop

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