Karen & Kurt 
Edgewood in St. Denis

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Smart Woman

The Rock and the Hard Place

Posted by karenandkurt on February 15, 2011 at 1:25 PM

I am waiting for a phone call. It’s not one I want to get but one I have to get. Basically, at some point today one of my surgeon’s schedulers will call and tell me what day I will have a mastectomy. Or breast replacement surgery as I wryly think of it when I’m not pondering the absurdity of this.


The only way to get rid of the DCIS, to become, as the phrase is, “cancer-free,” is to remove my breast. In other words, to save the village we must destroy it!  (Here’s the reference if you need it.) We can talk medicine all you want, but it comes down to medicine cannot do more than destroy my breast in order to save my life. This is not a cure. But it is a surgical resolution. The cancer will be gone but my body will be damaged in order to do it.


Honestly, I am coming to believe that because we have such good surgery and surgeons – and I do highly value both – our research focus is no longer on curing the body by returning it to health but on surgical resolution by removing the problem. I’ll expand on this another day; maybe one where I’m at home healing from this surgery.


But I am losing my breast and then having it replaced by an implant and then having the other side – the healthy breast – surgically altered to match the reconstructed breast. It is ridiculous. My cup size is large enough that my reconstruct surgeons cannot rebuild or replace my left breast to the original size.  So again, we are destroying or altering or resolving the other side to match what must be damaged because of DCIS.


My sister says she’s sad that I am angry. You bet your ass I’m angry! I have reason to be angry! I am facing a form of cancer that if untreated has the potential to become deadly at its worst, I am facing surgery to amputate part of my body, complications from reconstruction, and surgery to alter a healthy part of my body. I’m angry that the first two surgical resolutions failed. I am angry that I am being hurt, that this is happening at all. And I’m angry at the absurdity that I have to walk into a hospital and let this happen.


I am angry and I am afraid. Both are normal and healthy responses when being faced with something like this. This goes beyond my breast; it completely affects my life for the rest of my life. It affects my husband. It further delays any possibility of having children to the point that it can potentially prevent me from having children. I am not dealing with just DCIS – I am dealing with lifestyle choices, fertility and health for the rest of my life. The next time you have a diet Coke with lime, keep that in mind: I cannot have diet Coke with lime – my favorite – because I have DCIS and the chemicals in that drink may be among the contributors to this disease.


And before you feel this isn’t so bad, keep in mind all of the mammary tissue will be removed, along with my nipple, and a plastic bag will be fitted under the remaining skin. Thankfully, I get to keep my lymph nodes and chest wall. When the skin is healed enough, the doctor will stick a need through the skin into that plastic bag and add saline to stretch the “breast envelop” until it is as close to a size D as feasible. That will take a few months. Then the second surgery, if there aren’t complications, will again open the incision and remove the plastic bag (called a tissue expander) and put a breast form in its place. After stitching that back up, they will then cut into the underside of my healthy breast and remove mammary tissue to reduce the size of the breast – this will impact or eliminate my ability to breastfeed if I do have children. Then we cross our fingers that everything heals and there are no complications. The complication rate for all of this is about 15 percent, or pretty close to one in five women.


Oh, and if my work with my naturopathic does not reduce the fibroid, after all of this I may be back for major surgery to remove my uterus. So, you see this reconstruction does not happen in isolation – it affects all of my body and all my choices.


And to finish it off, the implants are not considered permanent devices. They do fail and I’ve been told to expect that mine will – someday. Maybe soon, maybe in 20 years. And there will be more surgery to replace it. The echoes of the mastectomy will continue for my entire life. This does not end and there is no cure, just more surgical resolutions.


I’ve made the difficult decision to pursue reconstruction – the rock is the mastectomy and the hard place is the reconstruction. So, I’m having breast replacement surgery. I’m just waiting on the phone call of when that will be.


Categories: Health

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Reply kate julian mackes
1:56 PM on February 15, 2011 
Karen, of course you are angry! Oh my gosh, you have every right to be pissed! Sometime we will have to get together over some drinks and discuss our mutual anger at "medicine vs. the human body" - after a trouble-free pregnancy my son was born with unexplainable complications, spent 53 days in the NICU, was sent home with tubes and wires coming from his body, subsequently endured 5 more surgeries, and to this day has severe speech impairment. WHAT? I am as angry now as I was 2.5 years ago when he was whisked away from me after his birth and I was denied the right to breastfeed him (for starters). We have every right to be upset and feel cheated when something goes so surprisingly wrong, and affects the rest of our lives so profoundly.

I am squarely in your corner. I support your decision 100%. And I wish you the best of luck on this journey. You will make it through this!!!
Reply Jen
2:19 PM on February 15, 2011 
I was only thinking of you this morning and wondering where you were in your decisions. I want to get in my car drive to Maryland and just sit with you and punch the wall (or a pillow). I want to be able to reach out and hold both Kurt and your hands. I am angry as well. Why you? Why when you finally got everything you wanted did this happen. Know that I love you and am thinking of you.

Please let us know when the surgery is and how we can help you other then through prayer. I also know NO pink! Thinking of you often.
Reply Beth Ross
3:35 PM on February 15, 2011 
No matter what day it is, I'll pray every day for you. I appreciate that you can share your feelings as you do. I want to know how this is affecting you.
Reply Bev B
6:07 PM on February 15, 2011 
Don't blame you for being angry. I am angry for you. I was going to send you a hug on Facebook, but I did not want anyone else to see it and I could not find the option to send it just to you. I have a hard time keeping up with things in Facebook!!
But here is your hug. And it is a very big one! Please keep me posted. I admire your strength and will pray for God to help you remain strong thru this ordeal.

Much love.
Reply karenandkurt
10:21 PM on February 27, 2011 
Katie, I didn't know. I'm sorry your little boy had to go through that and you with him! We definitely need to get that drink. Kurt and I are planning to be in Buffalo in July and maybe we can arrange it then. *hugs*