Three years ago I was on a road trip to, of all places, Las Vegas. I say “of all places” because I am not a gambler nor much of a drinker and the thought of spending a weekend in smoke-filled casinos has about as much appeal as getting a root canal. I have always been extremely allergic to cigarette smoke. And with cancer on both sides of my family, the smell of smoke has always made me anxious.
My girlfriends were persistent. “It will be fun, a girls weekend”. They showed me pictures of the suite that we would share. It was beautiful (think of the movie “The Hangover”, cut the suite in half and get rid of the tiger and you have a pretty good picture of what we had for the weekend).
I had been feeling incredibly tired for months (I did not yet know I had cancer, but, my extreme tiredness was one of the unnoticed signs of the battle my body was waging against the cancer within). Suddenly the idea of hanging out for three days in a luxury suite while my girlfriends gambled and went to shows (or whatever it is that people do in Vegas) started to have some appeal. I just wanted to rest. I remember how tired I felt then and how much I just wanted to do absolutely nothing. Which, by the way, is so NOT me.
At the last-minute, one of my girlfriend’s sisters (MJ – a breast cancer survivor) was able to join us. We had never met. I drove. MJ sat in the front with me and my two girl friends sat in the back and slept most of the trip to Vegas. The drive gave me and MJ an opportunity to get to know each other.
A little distance into our trip, she began to share her breast cancer experience with me. There were details of how she was diagnosed, of chemotherapy, and a bi-lateral mastectomy. But in particular (probably because it was something she was currently dealing with) she discussed her breast reconstruction surgeries in quite a bit of detail. I remember thinking, wow, I could never go through that. I was amazed at all she had endured.
She told me how the surgeries went. She described how she was about to get “new nipples”, how tattooing would be used to create a new areola and skin from her groin area taken to create the nipples. It was a bit more than I was comfortable hearing. It was so personal, so detailed and we were complete strangers. At one point, she raised up her top to show me what had been done to date.
MJ’s story had quite an impact on me that day. Little did I know, the very drug that saved her life back in 2005 (Herceptin) would, in a matter of months, be coursing through my veins to do the same (I hope) magic.
Not since that road trip have I heard much in the way of truly frank discussions of breast reconstruction. It simply is not an easy topic. Although, MJ had no problem sharing her story with me, perhaps it was because we did not know each other. It becomes a different matter, I think, when it is our friends, our families our colleagues.
Chemobabe has recently taken on this topic in her blog. And another favorite blog of mine, Nancy’s Point. addresses wholeness after breast cancer (with or without reconstruction). And a few years ago, this post (by a blogger who is actually a high school classmate of mine) addresses sexuality after breast cancer reconstruction surgery in her blog: “Breast Cancer the Second Time Around”
So why is it so difficult to discuss?
Breast cancer has provided me a very interesting window into our society. I know sex sells. I know breasts sell, I know, I know, I KNOW! (And, there is a lot written about groups that use sexy names to sell awareness of the disease and to raise funds for research – something that is a whole other topic).
But, until you have had your breasts removed, and until you have been forced to deal with the pressures that be (everyone else’s expectations of what you should or should not do) you really can’t fully understand how much having breasts and being perceived as a woman are so deeply linked. And it goes way beyond sex. And perhaps it is why groups with names like “Save the Ta-tas” and “Feel Your Boobies” are sometimes seen as offensive to those of us that no longer have ta-tas to save or feel.
Initially I was not sure what I wanted to do reconstruction wise. I simply wanted to survive. The last thing I wanted to worry about was breast reconstruction while I was battling an aggressive form of breast cancer.
But, there were other issues I had to consider too. (As a business owner and an employer I felt the need to minimize my time out, time off from work would have broad implications. And, there were other concerns: how long would I have to sit out from playing music, and insurance issues). It was not an easy decision at all. But after a great deal of thought, I decided to have “immediate” breast reconstruction surgery (knowing full well there was nothing immediate about it).
I admit, I felt pressured to begin reconstruction “immediately”. I realize now that this was not perhaps the best route to go (multiple surgeries while going through immune suppressing treatment is not the safest route it turns out). I spent months on IV antibiotics due to infections at the surgical sites (daily nurse visits to my home, an IV pole in my living room . . . okay, I know you get it . . . cancer is not much fun). But, my point is that had I waited on the surgery (which was never presented to me as a real option) I probably would have avoided the multiple infections and loss of skin that occurred (sorry if that is too much information, but, that is what can happen: “morbidity” of your skin, especially radiated skin).
So, I could have waited. But, it is what it is and I prefer not to look backwards. But, there is no reason why someone else can’t perhaps make a better informed decision by hearing of my experience.
Incidentally, I had what is called a lat flap procedure. This was the only option for me. Oddly, I got a lot of grief over my decision to do the lat flap from women at a breast cancer support group. I believe they meant well, I know they did, but, I found it a little upsetting.
I had, after all, consulted with many surgeons, I did research, I am not stupid (at least I didn’t think of myself that way). So, since it was not the kind of support I needed at the time I simply stopped going to the group. I knew for me it was the best decision I could make at the time. Those of us faced with these kinds of choices do not go about it without a lot of thought. As a result, when we are questioned about our decisions – our very hard to make choices – it is frustrating and I suppose, a little insulting.
My wish is that for newly diagnosed women, facing a mastectomy or other breast altering surgery, lumpectomy etc, is that they are presented with all options (not having reconstruction, having it “immediately” and having reconstruction at a later date). And my second wish is for those facing these choices that they be given the time, un-pressured time, to make their decision. And above all, as Chemobabe points out, once the decision has been made . . . it would be nice to have it trusted, not challenged or questioned.
There simply is not a one-size-fits-all approach to reconstructive surgery (whether to have it all, when to have it or type) any more than there is a one-size-fits-all bra.
This is a picture of our blues band, “Huge Blues”. From left to right: Tim lewis – vocals and guitar, Brett Caplinger – harmonica, Paul Hughes – guitar, center, me – stand up bass and vocals. The whole band is bald now 🙂 Paul shaved his head so we would all be bald 🙂 Thank you for doing that Paul, very sweet. My brother Steve also shaved his head. He did it on the same day that I did. He lives in San Diego and sent me a picture from his cell phone as soon as he had done it. I will post a picture of the two of us up here soon.
cancerfree2b 