I AM JULIE STRONG

March 30th I spoke with my oncology nurse and I asked her if I had to have a decision before I went in for my pre-op appointment the next day. She told me no, but I should keep my appointment and discuss everything with Dr. Fox.

The next day, when he walked in the room in his usual gentle, light manner he shook my hand and told me I was becoming a bit of a celebrity. I told him that it was hard pushing past the paparazzi on my way in. Essentially what he was letting me know is that the cancer board met on my case and that we need to get the surgery scheduled.

A brave, fierce wave rolled through my body and the words came out of my mouth before my mind or heart had a chance to interject.

Double mastectomy – no breast reconstruction.

While I had been overwhelmed the past few weeks in the unknowns of whether or not I’d need chemo or radiation or both and all that is involved with breast reconstruction and the fact that there are risks of doing them at the same time – I wasn’t keeping the main thing the main thing.

In his office…at that moment, all I could think about was getting the cancer out and having a long life.

I’ve also learned that the cancer has been there for quite some time before I noticed it, and because I was told that it was slow-growing and that it could have been there for a year or more I seriously previously thought I could deal with this when it would be more convenient. Didn’t I say somewhere that I started 2022 as the year when I’d focus on self-care? How could I have let myself be so overwhelmed by any decision other than getting the cancer out as soon as I possibly could?

I don’t really know how to explain this experience. My day to day, hour by hour, the lack of sleep, the emotions, the searching for information and answers and the what if’s that I’ve been going through. I do know that it changed every day. Some days were great and I buried myself in my work, my routine, my family and their needs. I kept myself so busy trying to figure all of this stupid cancer stuff out and still maintain our lives while also trying to figure what my kids need as they are going through this with me.

I’m juggling all the things in our normal life pre-cancer, the school projects and parent/teacher conferences and volleyball carpool and tournaments and a benefit dance at the high school. Has anyone taken the dog out today or fed her? I have a long list of Must Do items on my phone: taxes, pick up Anna’s glasses, the girls school physical has expired. Why is there a never ending pile of laundry that’s been washed and needs to be put away? Somehow we are out of milk in three days when I had to pour out more than a 1/2 gallon of expired mild 3 times in the weeks proceeding and how can I possibly be out of heavy cream for my coffee?

I just tried to maintain some level of normalcy while my head was swimming constantly – trying to decide what is best for me and my family and now looking for a therapist for my daughter and trying to keep everyone informed – knowing they are all very affected by all of this.

I have publicized all of this and I’m overwhelmed and don’t know how to respond to people reaching out. I don’t know what I need, I’ve never been through this. I am a planner. I have my life in a spreadsheet and there has been no column or row for cancer and no matter what function or layout – I just couldn’t figure out how to fit this into the spreadsheet of my life.

I realize now that I had been focused on needing to know things that can’t be known yet. I have learned that a double mastectomy with breast reconstruction, is a hard process. And I would be making a decision before knowing the results of the pathology on the mass, and I wouldn’t know what stage of cancer I have or how many lymph nodes they would have to take or if I would need chemo or radiation.

The process as I understand it for reconstruction: During surgery they take out all of the breast tissue. Then they place tissue expanders on top of the muscle and at first fill with air. About a week after surgery we get the pathology back and know the treatment plan.

The treatment plan will determine how things unfold. That while it’s in progress it will look strange. About 2 weeks after surgery, there’s a port in the expander they can access to take out the air and replace with saline. If I don’t need treatment, about 12 weeks with the expander, they can replace with the permanent. Because it’s in my lymph nodes and we don’t know how many yet – it’s most likely to expect some type of treatment post-surgery.

Chemo loves white blood cells and increases risk of infection. Radiation changes your tissue and makes your skin fragile. So if I need these treatments it increases the chance that I may have to have them taken out and start over…could be multiple surgeries. And because radiation changes the tissue, one year later I could still have problems with my skin. If you start over, you have to exchange the implant and clean out scar tissue and it could be a long road of multiple surgeries.

What I didn’t know until after I made my decision to delay breast reconstruction is that you can allow your body to go through treatment and heal before adding in the additional complexity of reconstruction and it has potential of less surgeries because of all of the unknowns for treatment – it’s not bad or wrong or right or better or worse to delay reconstruction and what I’m finally accepting is that when the doctors tell you every single person with cancer is their own case – that is so true. It’s not McDonald’s – you can’t manage cancer like you can having the same cheeseburger in Alabama, Maryland and France (although in France they probably put mayonnaise on their cheeseburgers instead of ketchup, mustard and onions – I don’t actually know).

On top of thinking about all of these things – I still don’t know if the cancer has spread. How could I possibly care about reconstruction at this moment? The blood work my oncologist ran came back with high levels that could be cancer in other areas of my body.

I left my pre-op appointment with a decision and a date for surgery – April 19th.