Six days to Surgery

I truly believe that ignorance is bliss and that there is something to be said for the beauty and innocence of not know all the myriad of details involved in surgery. I figure my surgical team went to medical school and they know what they're doing. For the most part putting myself in their capable hands as I expect my clients to theirs into mine.

But, as I get closer and start reading about what will be involved, I have to say, I am getting anxious. I've also been speaking to a few women who went through it and their warnings of what to watch out for also make me anxious. Lympedema, drains, back pain, constipation and the immobility.

It has me thinking about what is ahead for me next week. I look at my body and think that it will never feel the same again and never look the same again. Will I know who that person is in the mirror if I don't look at the face? Will it feel foreign to me? When I was pregnant I used to say that it felt like an alien had taken over my body with cravings and changing the shape of my body, will this feel the same minus the cravings?

What will I be able to do and more importantly what will I not be able to do? I am a very energetic ,active, and physically fit person who has never experienced any kind of illness. I'm used to jumping out of bed and starting my day with a sprint in my step embracing the day with everything it has to offer. I am told I will have to slow down, not lift anything over 5lbs (my laptop is 5.4 lbs) and not reach for things above my head. for how long? months? years? forever? When can I start working out again and doing Yoga?

I spoke to a woman who now carries a backpack instead of a bag and doesn't shave her underarms or have manicures for fear of lymphadema which is a serious disease that can occur after this surgery. What will this do to my sense of fashion? I know that sounds trite and vain, but who you are is in part how you look and dress. As it is I bought all these button down shirts for afterwards because I won't be able to lift my arms. I don't wear button down shirts!
I feel like I'm buying maternity clothes and hope it will be very temporary. I can donate them afterwards.

In many ways I feel like Alice In Wonderland, falling into the hole at surgery and waking up in a new place with a different life and different body.

Interviewing Your Doctors

Having been a VERY healthy person my entire life I was used to going for my yearly check ups and checking it off my list often being very annoyed if I had to wait more than 30 minutes in a Doctors office. I was a novice to the medical world and very medically ignorant. Except for watching ER and Grey's Anatomy that was the extent of my medical background.

So after receiving the diagnosis I was sent back to Dr. "G" , the Breast Surgeon. My husband Aharon and I sat in his office for 1 1/2 hours waiting for our turn. I decided to use the time to find out what the other women in the waiting room thought about him. I asked them to share their opinions of his knowledge, bedside manner and how informative he was with them. They were all fairly satisfied and found him to be OK. When it came to our turn we were brought into the examining room where we waited once again for about 15 minutes. Dr. "G" came in with his clipboard and probably looked up my name right before he walked into the room. He let me know what my diagnosis was, a DCIS in the right breast which would require a lumpectomy. He could fit me in next month. "What about the other biopsy that I have to get redone?" I asked.
"No, I see here you have one DCIS and I can take care of it with a simple lumpectomy". I continued to argue with him that I had another calcification that need to get re-biopsied since they didn't get enough cells to pathology the first time. He finally flipped the pages on his clipboard and agreed that I needed another biopsy. Not to worry. "What about radiation? I understand I will need 6 weeks of radiation." Oh, yes you will need about 7 weeks of radiation after you heal from the lumpectomy. He proceeded to do a very quick breast exam and told me to let his staff know when I wanted to schedule the surgery. I told then I would call them. NOT!
We were with him for less than 10 minutes and the only thing he was missing was chewing gum.
I couldn't believe I had just experienced this kind of treatment. He was dismissive, condescending, demeaning and treated me like I had a paper cut. Maybe it was a paper cut , buts its my paper cut and I certainly deserve better than this.

I quickly started to research through friends who had friends who went through this who to call.
I received many recommendations but the next hurtle was to find a Breast Surgeon in my Insurance Plan. So I started to Google and cross reference and make appts. I had 3 appts set up taking my films and pathology reports with me everywhere. Do not let go of your reports until you choose the right doctor for you. Get copies if you have to and remember that these are yours. You paid for them and own them.

My second interview was with Dr. "M" at Englewood Hospital. I entered the hospital which looked like a hotel lobby with a pianist and cellist playing. I waited 15 minutes to see the Doctor.
Dr. "M" did a FULL breast exam like I had never had before , had me get dressed and then brought me into her office. Once in her office she had the films already up so that she could explain everything to me. I brought a flip video camera with me to record her so that I could remember everything. She drew diagrams and educated me on what I had and what we still needed to explore with a Breast MRI to make sure we got it all. She made me feel comfortable, relaxed and that I was in good hands.

But I still had another interview with Dr. "D" at Hackensack Hospital. Hackensack also has a wonderful reputation. We waited an hour to see the doctor factoring that into our decision of who we would choose. Dr. "D" was competent and professional giving me another breast exam and brief consult. I've never been felt up so much in my life, at least not by professionals. But the overall feeling at Hackensack felt like I was in a factory. A cancer factory.

We proceeded to meet with an Oncologist who we loved, but realized we would not really need him until the end. He suggested we concentrate on getting a good Breast Surgeon and I told him I was in the process and shared my experiences with him. He suggested I meet with the best Breast Surgeon on staff at Hackensack, Dr. "W" and he made a call to get me an appt the following week. I trusted and liked him so I agreed to meet with Dr. "W".

The following week we were back and Hackensack Medical and once again waited an hour and a half. Dr. "W" gave me the most thorough breast exam of all and diagnosed me the same as the others. lumpectomy and radiation unless the second biopsy came in malignant. Professional and competent but no more than that. She was very clinical.

We decided to go with Dr. "M" from Engelwood because of her bed side manner, we loved the hospital, short wait time, and she was the only one that insisted on the breast MRI.

We chose well! The breast MRI showed a third nodule which no one else would have caught.
I proceeded to the second biopsy which revealed more malignant calcification's which now meant that the simple lumpectomy and radiation would now be a mastectomy and reconstruction.

This is your body and your journey. As I said to Dr. "W", "This may be a paper cut to you, because you do this everyday, but its my paper cut and I will choose who will take me on this hopefully short journey in the best way possible".

I felt in charge. Responsible for my health and empowered that I had choices about who would make this journey the most comfortable.

I felt sorry for the women I interviewed in Dr. "G's" waiting room. How may were being mis-diagnosed and treated like a herd of sheep.

This is your journey, body and life. Take charge and know that you have options.

As soon as news started to reach family and friends everyone started reaching out with "someone" they knew that had just gone through this. "You must speak to so and so and read such and such". I must say I was very overwhelmed with all the information and education coming my way like a rush. I was still digesting and absorbing the idea but time was ticking and I had to get a game plan together so I started calling survivors of Breast Cancer and getting their advise.

Being very medically ignorant my whole life I felt like a novice but quickly started to order some books from www.amazon.com as women were reccommending them to me.

Here is my list of books:

Dr. Susan Love's Breast Book by Susan M. Love, M.D.

while I was ordering I also got Dr. Susan Love's Menapause & Hormone Book
(best to be ready for that too)

100 Questions and Answers About Breast Cancer by Zora K. Brown and Harold P. Freeman, MD

Just Get Me Through This by Deborah A. Cohen and Robert M. Gelfand, MD

Five Lessons I Didn't learn From Breast Cancer ( and One Big One I Did) by Shelley Lewis

Then there are the spiritual books you start reading figuring that there is a reason you got this.
Nothing happens without a reason so let me explore that as well.

Louise L. Hay's books: You Can Heal Your Life
Meditations to Heal Your Life
Inner Wisdom
I Can Do It - How to use affirmations to Change Your Life

Anyone that knows me, knows that I live my life with a constant positive attitude and affirmations. This was a natural for me and failure is never an option.

Telling those you know and love that you have just gotten a diagnosis of Breast Cancer is one of the hardest things to talk about. Just saying the word "Cancer" and attaching it to yourself seems like an out of body experience. Every time I had to say "I have Breast Cancer" I started to cry. It just didn't seem real. Didn't seem to be really happening to me. I feel great, I look the same, how could this be? It seemed as if I just grew a tail and was wondering if anyone else could see it. Did I look any different?

The absolute hardest was having to tell my three daughters that their mother has Breast Cancer. My youngest said " But have always been the Chosen people, how could this be?"
Yes, we have been very luck and fortunate to not have to experience any adversity but I suppose our turn has come. No family goes unscathed in life. All I kept thinking is thank goodness this happened to me and not one my girls. That would have been unbearable.

As long as its me, I can handle it. I am blessed that they caught it early and I am only at Stage One. As one of my Doctors said " if you had to choose a cancer, you chose well" I guess we are the Chosen people.

In November of 2009 I had a routine mammogram . The facility I always went to upgraded their machines to new digital mammography scanners and the technician told me that these could pick up more images so don't be surprised if they call you back for a second visit. "We see more so we have to explore more with these new digital machines".

So I wasn't surprised or concerned when I was told to come back for another mammogram which I dutifully went to the following week. What shocked me was the letter I opened a week letter letting me know that they had found "abnormalities" in my mammogram and I was to contact my gynecologist as soon as possible. What a wonderful way to find out! I called my doctor and received a message back telling me to contact Dr. "G", a Breast Surgeon, to schedule a biopsy.

Dr. "G" was short and curt explaining that 80% of the time "calcification's" found in breast tissue turned out to be nothing and not to be concerned. I scheduled the biopsy at Chilton Hospital with Dr. "W" in mid Dec. Unfortunately I turned out to be in the 20% category . They found that the clarifications were malignant and there was another spot that needed to be biopsied again since they couldn't get enough tissue.

So on the Day of Christmas Eve I was told I had Breast Cancer! Wow! How could that be?
We have no cancer of any sort in my entire family. Diabetes and Heart Disease. That's what we have. We don't do cancer, that's for other families.

So here I am 3 months later facing this dragon.