The power of the number "10"

My countdowns are well under way. I'm officially 5 days away from our wedding, a day that Ward & I have both waited on for years. We've been together for over 4 years and planning our wedding for almost 3. Little things like Cancer and Cohn’s disease kept getting in our way. Needless to say, it's finally happening! I am so excited! I know the wedding will be beautiful and a happy day for our family.

Last week, we realized we were a mere 10 days away from the wedding while we were making all of our last-minute to-do lists. For some reason, I realized that my surgery would be a mere 10 days after our beautiful wedding.

The power of the number "10" resulted in a minor breakdown for me. The guilt I feel for having such a major surgery right after our honeymoon and losing work right before the holidays weighs on me. The fear I have, well, it's understandable, but at times it can take my breath away. The anxiety about losing my boobs. All that-it's overwhelming.

I hate that surgery is so close to the wedding even though I know there was no other time to do it. But then, when is the right time for any surgery? I really hope that I don't forever associate our wedding day with mastectomy. I pray that in the end, I will look back at this pivotal point in my life and think to myself...."I started a new life with my husband, our children, and had surgery to ensure that life together".

I can't focus on that now, though. There's too much to do! This week will be crazy for sure-wrapping up wedding plans, wrapping up things at work since I officially begin my leave next week, getting things prepared for my dad who will stay with the kids while we're gone on our honeymoon, and sooooo much more.

Today, I'm well past the number "10" and hope to keep this momentum going! :)

Story time?

Ward says that I have been presented an opportunity to impact many women who will face this decision.

What the heck is he talking about? Well, he’s talking about an email I received this morning from one of the gals that are coordinating the American Cancer Society’s “Making Strides Against Breast Cancer” walk that is taking place the Saturday before my surgery.

Just to catch anybody up on our schedule the next few weeks…..Ward & I are finally getting married in 9 days (YAY!), on October 22. We’re saying goodbye to the kids and work for a week so we can have some much needed R&R and we’ll return on Friday, October 28^th. We were originally going to come back on Saturday, but a good friend had sent me info about this walk. Ward & I decided that it was an opportunity that we couldn’t miss. An empowering walk with sister fighters & survivors, a mere three days before my own double mastectomy, reconstruction, and sentinel node biopsy. It can’t be a simple coincidence...we are there!

Anyhoo…I’ve been chatting with this lovely lady for over a month now. She’s helped me create my own team to walk with me and to help raise money. She is coordinating our T-shirts and takes the time to answer all my questions, so we’ve spent some time communicating. However, I was really surprised to receive this email from her this morning:

“Mrs. Jones* will be filming a short video the morning of our walk. She was wondering if you would be interested in being filmed for the video. It's just to learn more about your story and why you are participating in the walk. I think you are perfect for this short film! If you are interested, what time would you be arriving at the walk? She can meet you and film before it begins. It won't take a lot of your time. Just let me know, thanks!” (* name has been changed)

A video interview sounds harmless, right? Why am I hesitant?

It’s because I don’t feel like my story needs to be in the video. Over the last few months, I have met some tough cookies. Women who were diagnosed with Stage 3, Stage 2, even Stage 4. These women’s stories need to be told. The story of a lady who was healthy when she accidentally discovered a lump in the shower and how that lump was Stage 3 breast cancer with positive lymph nodes. The stories of the women who didn’t have a choice between mastectomy or lumpectomy with high surveillance. What about the stories of all the women who can’t reconstruct their breasts yet because of the effects that radiation has had on their skin or the mom with 3 children who was expecting to wake up from surgery with new “foobs” only to be told that reconstruction was the least of her worries…..her breast cancer had metastasized? These women endure chemotherapy, radiation, and mastectomies and more times than not, they don’t have a lot of options.

I’m the lucky one so far. Because of the BRCA1+ gene, my doctors and I knew my risks years ago. I had the opportunity to have high surveillance. We were like the military….waiting for the enemy to cross those lines. When it did, we had a plan. I had a choice where most breast cancer patients don’t. Although the doctors felt like all the bad stuff was removed during my biopsies, I chose to continue with a bilateral mastectomy. I had other options; I could have done radiation and waited for cancer to strike again. As of now, chemo isn’t in my immediate future and neither are long radiation treatment schedules. And although that is subject to change depending on the sentinel node biopsy, right now….I have a choice.

These women’s stories that I mentioned? They need to be told because they are stories of true courage and strength. Cindy’s story. Michelle’s story. Jill’s story. Donna’s story.  These women are true inspirations and I am blessed to have met them all.  

I try to keep all these ladies’ in the forefronts of my mind when I start feeling overwhelmed or scared. I know they have been there, too. Our stories are all different, but the same. Could my story help impact another woman faced with these decisions? I’m not sure right now because I’m just trying to process all of this. I have to help empower myself to have the courage to go through with this surgery and wait for more biopsy results, which was one of the reasons I signed up for the walk. I just don’t know how to empower others when I feel like I’ve just begun this journey myself.

I'm sure that this organization will tell the stories of many Cindys, Michelles, Jills, and Donnas. And they should. I just don't know about sharing Amy's story.

I haven't responded to her yet.

Two down....

Only one more pre-op to go!

Pre-Op #2 was this past Friday with my breast surgeon, Dr. P. First of all, let me just say that if you don’t already know, I love this surgeon. I knew that it would be a great appointment because it feels more like visiting a friend. I’ve gotten to know this surgeon over the last 3 years and vice versa. It is very easy for me to talk candidly and honestly with him and not feel embarrassed or reserved. Having said that, I also knew this appointment would probably be difficult because of the subject at hand. This appointment would not be focused on reconstruction, obviously. This pre-surgical appointment for a bilateral mastectomy with Sentinel Node Biopsy spent little time discussing the actual mastectomy procedure since it’s pretty cut and dry (no pun intended!). We spent a lot of time talking about the Sentinel Node Biopsy, procedures and possible outcomes. The “possible outcomes” meant possible cancer diagnosis and treatments.

Over the last few months, you’ve gotten a glimpse of the processes that sometimes consume my brain. Dealing with an upcoming mastectomy has been difficult for me. Dealing with the added information that I’m in a waiting pattern (AGAIN!) to find out if I have breast cancer in my lymph nodes is another beast in itself. When I first began blogging, we had determined that surgery was my best option given my history and my genetic predisposition, BRCA1+. All the bad stuff was supposedly removed during those awful biopsies, so my double mastectomy was more preventative than treatment. I knew that if I didn’t have the mastectomies, it would only be a matter of time before breast cancer would return, and the fear that drove me to this decision was that the cancer would return with a vengeance.

Dr. P talked in great length about this testing. After the lymph nodes are mapped with the radioactive dye, he would remove 3-5 and sent them to pathology immediately. There, they would be instantly frozen for testing. My surgeon will have a preliminary pathology report, about 90% accurate, in his hands before the mastectomy part of the surgery is complete.

Should they find evidence of cancer in the Sentinel Nodes, the surgeon would then perform a lymph node dissection to determine how many other nodes were affected. This would happen during the mastectomy-portion of the surgery. He would remove any them immediately. I would probably not have an expander placed on my left side if this were to happen because I would need to have radiation. The extents of treatment would be determined by how many lymph nodes were ultimately removed and further pathology reports. Ward wouldn’t even find all this out until it was over.

Should the sentinel nodes come back clean (Dr. talk for “no signs of cancer”), then Dr. P would complete the mastectomy (estimated 2.5 hrs.), turn it over to Dr. A for placement of both expanders and reconstruction, and go talk to Ward and family that will be waiting. I’d be all set while we wait for the full pathology report. It takes about a week to come back. All breast tissue, nipples, and the sentinel nodes would be extensively tested. Should everything come back negative for cancer, then I just enjoy the reconstruction process. Should it come back positive for cancer, well, then we’ll move onto oncology for more treatment options.

Dr. P and I both feel pretty sure that everything will come back nagative and I'll be on the road to recovery. There's just that chance.

One thing I know about this whole thing is that there are a lot of chances for any number of different things that could happen during this entire process. Anything can happen. Of course, that rings true even in normal circumstances! :)

Now, I only have the anesthesia pre-op left to do. I will be making a trip to the hospital the day before surgery to get that one out of the way. That appointment is on Halloween......I wonder if they'll just tell me this has been all one big trick!  Hahaha....that was a pretty bad joke. :)

I'm the one who will get the best treat. No cancer and nice, new boobs!

As of today, we are 3 weeks away.

One down....

Pre-op appointment, that is!

Ward and I met with my plastic surgeon yesterday to go over the first phase of reconstruction and finalize everything for surgery.  I was so happy that Ward was able to come and ask questions, too. We were there for about 2 hours. It is so nice to feel so comfortable with your doctors, and I do with both of my surgeons.

We talked about what would happen, step by step, after the Sentinel Node Biopsy and Mastectomies were completed. Everything from incision locations to expander placement, the use of Alloderm or not, drains (BOOOO!), physical therapy, and follow-ups. We talked about possible complications and actions to take should they occur. He addressed my emotional well-being after surgery, which was a nice surprise.

In my experience, some doctors will not even acknowledge emotional issues, unless you count a referral to a Psychologist as acknowledgement.  It made me feel even more at ease when Dr. A talked to me about my feelings surrounding this surgery and things to come. He told us that physically, I would heal relatively fast. Barring any complications, of course. Emotionally, however, it will take some adjustment. I didn’t share with him that my anxiety was through the roof yesterday morning but I’m sure he already knew.

We talked about nipples. The first and only time I saw Dr. A, I had just been diagnosed and was completely overwhelmed….physically, emotionally, medically, and then some. We discussed the nipple-sparing option and although I’m not the best candidate for it, I was adamant that we try to save them. Well, that’s changed now.

I think at first, I was desperate to hold on to anything I could. I knew I was losing my breasts, but if I could just keep my nipples, I had something left of me. Maybe I wouldn’t look down at my scarred chest and feel like a freak or less-than as a woman if I had my own nipples.  I had done plenty of research between the time of diagnosis and my first appointment with the surgeon, and the pictures of mastectomy & reconstruction scared me beyond words. It was terrifying to me.

My feelings towards my nipples are still the same on some level, but I think I am successfully processing my decision for mastectomy. I can let them go now. If I decided to try & keep them, it would be a risky & difficult healing process with no guarantee that they would survive. Even if they did survive, I would have no feeling in them and they wouldn’t look or react the same. So why bother? The whole point of this surgery is to lower my risk of breast cancer returning. If I’m going so far as to remove my breasts, one of which has had no abnormal findings on mammos or MRIs, then why would I want to try to save nipples that contain more breast tissue? Finally, my  sane brain is making a comeback over the emotional one!  

Yesterday’s appointment was still extremely emotional for me. I can busy myself and not think about the surgery, but these appointments kind of throw things in your face and you HAVE to deal with them. I cried a lot yesterday and admitted to Ward that I was scared. I’m sure my anxiety will increase as surgery gets closer, but I am really trying to accept all this and come to terms with it. I officially have less than 4 weeks before surgery and the time is now flying by.

So tomorrow I have pre-op #2 with my breast surgeon, Dr. P. I’ll be back to keep everyone updated on how that one goes.