Monday, September 12, 2011

We Ladies Who Lu...mpect

My good friend, DancingInTheRain, is a career woman, a mother, a wife, a sister, a daughter, a friend to many, a writer, and a dancer. This is her story:

Sometime during the transition from 1 in 9 to 1 in 8, when I wasn’t really paying attention, I too became a statistic. 

Almost up till that point I had been the ultimate career woman, if not in a meeting then behind a car wheel, behind a computer screen or behind a podium, with never time for family or friends apart from emergencies when I morphed into a super-dependable Mary Poppins or Marge Proops. 

Indeed it was while recovering from a sudden bad back (me?!?), during which I despondently lurched around the house Hunchback of Notre Dame style, that my GP disapprovingly reminded me I’d missed my last 3 mammograms (note: workaholics have no 'me' time). In fact she kept reminding me because the computer flashed every time she entered my name since I was on the high risk list for breast cancer. 

After three months of bed-rest, traction, physiotherapy, heat therapy and an excruciating steroid spinal injection (not all at once) I was finally able to stand straight enough to undergo the torturous mammogram scan - a necessary endurance but certainly not for the fainthearted. And it was a surprisingly short journey from there to an ultrasound and an on-the-spot, without-a-warning, biopsy.

Sporting what’s known in the trade as lumpy breasts, whereby harmless little cysts make up the breast tissue, I was unconcerned. Still dealing with strengthening the old backbone, getting rid of the limp and looking forward to a revitalised lifestyle full of healthy exercise, it was somewhat of a shock to hear that the biopsy was 'Positive'. This term is a misnomer. In this context, 'Positive' is negative, bad, not what you want at all.

OK you think, 1 in 9, or 1 in 8 as you now learn, or whatever, it has to be someone. Well we all know someone, don’t we? Or even sometwo or somethree. Treatable breast cancer (that might return after treatment), we all know the procedure: operation, radiation or chemotherapy (or both), and tablets, followed by checkups for the rest of your (hopefully long) life. We think we know the procedure - until it starts.

First, a next-day 8am appointment with the breast surgeon, magically arranged by the family GP (could easily get used to this VIP treatment). A lovely patient man and a 10 minute turned 50 minute consultation, during which he explained that a lumpectomy would suffice to remove the offending lump. At least not a mastectomy you think, although the rough sketch he performed with the incision line going straight through the nipple (ouch!) was worrying. After several nightmares I finally plucked up the courage to ask if this was indeed the case and was reassured that it was meant to be a 3D sketch – he actually meant BEHIND the nipple. From that moment on, I decided to ask straight out about anything I didn’t quite understand (like almost everything…).

Strangely, no-one was able to actually feel a lump, but the mammogram CD with the little white dots was there to prove it.  So this is what cancer looks like? And then, not only are they telling me that I have cancer in my left boob – but some of it happens to be invasive – and it might now be already travelling happily throughout the rest of my body. Apparently the rest of it is in-situ, meaning that it’s not going anywhere – it really loves that left breast – but since it's ‘high grade' it might change its mind and decide to move on after all. Bottom line, it all has to be whipped out asap. 

But first it's necessary to check that it hasn’t already moved on and in.  Tests, tests and more tests: Stomach CTs, chest CTs, bone scans, blood tests. Tests which involve fasting, drinking iodine, injections, infusions and lying immobile (seemingly forever) within a cacophonic cylinder. One technician warned I would feel uncomfortably warm in the nether regions as the test progressed, "but don't you dare move".  In fact, the feeling was such that I indeed thought I had inadvertently wet myself. Lucky he warned me so delicately in advance. Honestly, everything is bearable, just seemingly never-ending. And you still have to await the results. By now you know you need a 'Negative'.

Time to choose a well-recommended surgeon. Not knowing where to start you ask friends, family and acquaintances. This is when you realize the significance of the 1 in 8 ratio; nearly everyone you ask has either had a lumpectomy or is close to someone who has had one. Although the ladies who lumpect (LWL) club is not one you would choose to join, once a member, you find yourself, without quite knowing how, surrounded by supportive, knowledgeable, caring women. You really don’t know what you would do without them. 

Ending up with too-long a list of surgeons, some LWL advised that it's actually the oncologist who is the most important long-term doctor and they're basically right. However, while waiting for a life-saving operation that will also change how you look and feel about yourself, it doesn’t seem that way. It’s hard to make a decision. And you don’t want to upset those who went to so much trouble to advise you. I still feel guilty for not choosing the surgeon recommended by two family  members!  Also, whenever something, however tiny, doesn’t go according to plan, niggling doubts about your choice of surgeon are quick to appear. Best to ignore them for peace of mind’s sake, and it’s too late anyway; the lump has been lumpected. And in my case, relumpected.

The results determining the next stage are due any day. Another lumpectomy, a full mastectomy, radiation or chemotherapy - anything goes. Family and friends are jumpy, eager for answers. But as we move through the various stages of discussion, diagnosis, decision and eventually treatment after treatment, we ladies who lumpect have learnt to wait (almost) patiently with 'step by step' as our daily mantra.  

DancingInTheRain

8 comments:

  1. What a truly horrible experience you are going through. And what a truly brave post, it must have been difficult to write. So many decisions to make and so quickly too. I wish you all the luck and hope this "storm" passes quickly and without too much damage.

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  2. Good luck Dancing in the Rain, what a horrible time for you. I too wish you lots of luck, and hope it's all done with very soon. Emma

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  3. Very moved by your post Dancing in the Rain, I too have lumpy breasts and I too have very little me-time. Thank you for sharing so frankly, feel inspired to visit my doctor soon to get everything checked.

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  4. thank you for your post. It is an inspiration not only for women in the same place as you but for anyone trying to support someone and understand what they are going through. thank you and blessings to you.

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  5. us lumnpy boobers are really blessed in a way becauase we are watched like hawks if we take advantage of the medicakl system ! DO NOT get lazy - early detection is the easiest solution, I KNOW!!

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  6. I underwent a double mastectomy, so understand your dance, Be well

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  7. On behalf of DancingInTheRain, who is otherwise engaged at the moment, thank you all for your lovely supportive comments.

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