I’ve Got Nipples!

It’s been three weeks since getting my new nipples and these last three weeks have just been…….odd.

I’m trying to imagine the expression on ones face if this is the first blog post of mine that they have ever read. 

Hi. I’m Julie and I write weird stuff and post weird pictures, while trying to inform, yet not embarrass myself or my readers. For years I’ve blogged about WW and my personal successes and challenges.

Now I also talk about Breast Cancer.

I will be posting pictures in this post of my nipple reconstruction because I am sharing my experience in case you or someone you know is considering nipple reconstruction. It’s actually quite fascinating. I encourage any questions and nothing is off limits here.

I had to come back and edit this post today based on what a member asked me at a WW Workshop I was coaching this morning. 

First of all, she is adorable and I am just getting to know her. Her question to me at the scale while I was weighing her…..

“You look great. Now are you wearing Spanx?’

I giggled.

That question allowed me to share my story with her of breast reconstruction via DIEP flap. I told her that I was not wearing Spanx but my tummy is flat because after a double mastectomy, my genius doctor was able to transfer belly tissue along with blood vessels up to my chest and make me two new breast! She was amazed. Then I said, not only that, but three weeks ago the doc made nipples for me out of my own breast skin! 

It lead to a great conversation and she thanked me for sharing my story. It was a great opportunity to then open the Workshop by sharing our conversation and reminding all of my members to do monthly self breast exams. 

WW is such a great place to learn how to live your best life, and a huge part of living your best life, your healthiest life, includes annual physicals, a colonoscopy if recommended by your doctor, mammograms, screening of anything your doctor has suggested and knowing your family history if it is available to you.

It was a great Workshop and I appreciate my members so much. It really is an honor to be able to reach so many people.

Now…..nipples.

I had my nipple reconstruction surgery on Tuesday the 16th. I took my doctor’s advice, and I took the remainder of the week off of work. This was a good decision. My body was wrapped up like a mummy and I feel like I spent the next two weeks in a strange fog and operated through life on auto pilot. I was just going through the motions. Mind you, the following day I went to a coffee at a friends house, then a happy hour at another friends house (I sipped on tea and water), and I believe the day after that I ran a few errands and kept myself busy. A few days later was Easter and Mike and I went to our annual Easter dinner with his side of the family.

The following week I did go to work and I think I appeared to be my normal self. I’ve actually had three very full weeks, but it’s all so oddly foggy. I had one of the granddaughters over for a sleepover, I shopped on three different days for pillows, blankets, fabric for curtains, jack stands, bug spray, and all sorts of accessories for my trailer/camper that I recently purchased. I took my trailer to a trailer shop to have it checked out for safety, I’ve taken a few good walks and one Saturday evening Mike and I went to a beautiful Celebration of Life for a friend of mines mother that recently passed. So, I have certainly remained busy, but busy and in a fog all at the same time. Outta sorts if you will.

Finally, going into this last weekend, I felt like the fog was lifting and I could think clearly.

Along with the nipple reconstruction, I had some scar tissue removed and fat grafting was done (harvested fat from hips and thighs is used to fill in areas of the breast to make the breast look more full and natural).

The scar tissue removal was a success and I’m very happy that I decided to have that done. It was uncomfortable and I would have always wondered…should I have?

Fat grafting. Ugh. My thighs actually still hurt, and unfortunately, they still look the same. I’m not sure how that’s possible, but I guess it is. I do not like the way my legs look, but I do appreciate what they do for me. I keep telling myself that. I appreciate what my legs do for me. I appreciate what my legs do for me. It’s on repeat in my head. Positive self talk. 

Pre surgery. Marked up and ready to go! The areas marked are where he injected the fat to give my breast a better shape and fill in some of the empty spaces where the breast tissue was removed. 

 

More notable in this picture with me standing up.

 

Three days post nipple reconstruction, I was allowed to remove the bandages and nipple shields and shower. What I saw I was NOT prepared for at all. 

My doctor explained this to me basically like origami, but with your skin. Kinda.

My right nipple looked as expected in size, (approximately 1/4″ in diameter and in depth) but I was not prepared for the 20+ black stitches surrounding it. I had 20+ stitches on each nipple! I guess I wasn’t expecting to see so many! I also just assumed they would be the kind that dissolve. They were not.

My left nipple however, was twice as long as my right nipple! (1/4″ wide but a good 1/2″ long) That’s right. It was sticking wayyyy out there.  It looked awful. The stitches on my left side looked nothing like the stitches on the right side as far as the actual incision. It looked like two different doctors worked on me. Then I was unclear about how to care for these new nipples over the weekend leading up to my follow up visit 7 days post surgery. My post care paperwork was vague. Possibly the fog I was in. Then my phone call to the office was not returned. I was a little bit of a mess. I didn’t like the way I looked and I wasn’t sure what I was supposed to be doing.

With each surgery I have asked 1001 questions, and for some reason I did not do that this time. Therefore, I was feeling disappointed with everything, I was feeling foggy, and I knew this meant a revision of some sort. Ugh. Can we just be done?

Thankfully I have my friend Nancy that is going through the same exact thing. I called her for advice. She had nipple reconstruction about 4 weeks before me at the same office with the same plastic surgeon and she helped  me figure out what to do over the weekend and also told me what to expect over the next few days. She was also surprised at the amount of stitches and at the appearance of her nipples when removing her bandages. There is certainly something to be said for knowing someone that knows exactly what you are feeling and experiencing, physically and emotionally. I was happy I had her, but I was feeling uneasy about my outcome.

A part of me was now beginning to feel a bit vain for even having nipple reconstruction. It’s the first time since being diagnosed with breast cancer that I questioned one of my decisions. I hated that I was experiencing some regret. Why did I add more surgery? Why did I think I needed nipples? Why wasn’t I just happy to not have cancer and to have breast and just move on? Mike didn’t care if I had nipples or not. Why did I? Was it worth it?

Then another part of me (the more sensible side of me and the side I like a bit better) reminded myself that these incredible doctors have worked hard to make this even a possibility for women that have had a mastectomy and I’m extremely fortunate to have this opportunity. It’s okay for me to want to look more natural.  It’s okay for me to want to have nipples. It’s okay for me to want to tattoo an areola on my body later. It’s okay for me to want as much of me back as I can get. I need to not be in a hurry. I am so fortunate to be here and I do not forget that. I can be grateful that I don’t have cancer and also get me back to feeling comfortable with what I see in the mirror.

I have now had three post op appointments.

First appointment, the doc just looked at everything to see if I was healing well. There I expressed my disappointment. There was also a large knot of fat in the middle of my chest. He said that I could massage it and that it would go down. It was visible. He assured me that I would be pleased with my end results. I doubted it.

Last week I had my second post op appointment. They removed every other stitch and it was obvious that I would be returning this week for a procedure to reduce the size of my left nipple. This sounded absolutely awful. Most women lose all feeling in their breast after mastectomy. My breast are mostly numb. However, I have been noticing quite a bit of sensation on my skin and on different areas of my breast. This is apparently unusual, but for me, nice for the future of me and my breast! I felt the nurse remove some of the stitches! Thinking about what the doc would actually be doing to reduce the size of my 1/2″ long nipple at my next appointment had me freaked out just a bit!

While in a fog those first couple of weeks, I was feeling all sorts of emotions. I never came here to blog because I didn’t really know what to say. Imagine that. Me? No words? Doesn’t happen often.

Here are the last three weeks in pictures.

After surgery. I do not remember posting this on Instagram.

 

Nor do I remember this on the ride home.

 

Me, for the first three days after surgery. (So glad I didn’t go to work.) After the fat harvesting (liposuction), you have to be wrapped up pretty good! Remember when I said my thighs don’t look any different? I do not lie.

 

This is three days after surgery. This I remember. The compression pants were part of the post surgery care. I was basically one big bruise. I was so nervous to take these blue shields off and take a look. Don’t judge my underwear. I’ve had that pair for years! They’re comfy.

 

Me convincing myself to just do it. I was SO not expecting this process to be so emotional. Emotional? Yes. Just not like this. There’s no going back. 

 

I was not pleased when I saw how different my nipples looked and when I saw how oddly large and long my left nipple appeared to be. I knew it meant another procedure but I didn’t know what would be involved. I also was not expecting to see so many stitches. Nor was I expecting to do this on my own at home. I guess I just assumed they would do this at the office. I was just all around unprepared for this.

 

Yesterday, I had my third post op appointment. They have a “procedure” room at the office. It looked like a miniature surgery room. Doc numbed me up with a local anesthesia just in case I was feeling anything. He turned on the tunes and we chatted a bit about what he was going to do. Lynn, my nurse, helped me relax and we got started.

He actually gave me two additional doses of anesthesia during the procedure because I was feeling a bit of what he was doing. So strange to be awake while knowing what was going on with my body. It ended up being one of those situations where the anxiety leading up to it was actually worse than the procedure.

He removed the stitches in my left breast while nurse Lynn removed the stitches from my right breast. Right nipple looks great!

He actually used a tape measure on my right nipple to see how long it was. He then went to the left nipple, measured and made a mark. I watched all of this and it was just weird.

He then reduced the size of my left nipple (I watched none of this!) to match the right nipple. It wasn’t so bad. I’m feeling so much better. The fat knot in the middle of my chest seems to have gone down with me massaging it. The fog has lifted. My emotions are in check.

While the stitches are now removed from the nipple reconstruction three weeks ago, I have new stitches that will come out in about 10 days on the left breast. Along with reducing the size of that nipple, there was also an odd skin fold/pucker on my breast that he fixed with another 6-8 stitches. Things actually look pretty good on each side.

This whole process has been such a learning experience, an emotional experience, and an experience I am happy to have the opportunity to share in hopes of helping others understand the process of breast reconstruction after cancer.

This is my right reconstructed nipple. My scars will fade. Areola tattoo to come. So far all of my scars have healed nicely and faded well. My areola tattoo will cover most of the stitch scars that do show and eventually, I will be able to put this chapter behind me.

I think it is all extremely fascinating. 

 

Fun stuff over the last three weeks.

Sleepover with this little ball of energy and smiles and hugs.

 

Our small annual Easter Sunday with Mike’s family. So many wonderful people in this room. 

 

Fun things going in my trailer next week!

 

It’s already feeling more and more like mine and the above items aren’t even in her yet!

 

Mike and I celebrated our 20th Anniversary over the weekend. On our 15th Anniversary we took a beautiful trip through California Wine Country and talked about how for our 20th, we’d like to go to Hawaii.

Here we are on Saturday at an annual local art fair that we enjoy. Not Hawaii. We spent the entire day together doing things around Kansas City that we like to do. It was a perfect day for the convertible and we enjoyed our time together. He looks adorable, I’m just trying to fit us both in the picture and smile. I’m also likely directing him. Lean in. Move over. Okay, smile now. I took four pictures. This was the best one of me. He looked good in all of them. 

 

A lot has happened over the last 5 years, and as much as I would love for us to go to Hawaii one day, spending the weekend together in town was a great way to celebrate us. 

Our actual anniversary is today, the 8th. Tradition says that the 20th is celebrated with china or platinum, so tonight we’re going out for Chinese Food. No Joke. Maybe we will have a platinum candle stick on our table. I’m not finding any information about nipples being a 20th anniversary gift, but somehow I think we ought to celebrate that!

How fortunate I am to be celebrating my 20th anniversary. I am thankful everyday. Thankful for great doctors and nurses, thankful for support from family and friends, thankful that I paid attention to my body and thankful for you that take the time to come here and read when I post. Thankful for many of you that have stuck with me when I’ve slacked off. Thankful for your kind comments, well wishes and prayers.

 

Pro and Con of Nipple Reconstruction

Pro – You have nipples.

Con- You ALWAYS have nipples.

I’m okay with that. 

 

Please remember to feel your breast monthly. Mark your calendar for a time of the month that works best for you.

Check for any lumps, bumps, dimples in skin or changes in skin color. If you feel or see something unusual, please have it checked out. It can be scary, but you can also be saving your life.

Share this message with your family and friends. 

This is for women AND men.

Breast cancer is much more common in men than I realized.

No one wants to think that it can happen to them, and we certainly hope that it doesn’t, but I can not believe how many people I know personally (one friends 90 year old father) that have been diagnosed with breast cancer just since my diagnosis.

Be your own advocate. Know your body. Pay attention to any changes.

Did you know that there was a law passed in1998 called the Women’s Health and Cancer Rights Act (WHCRA) in order to provide protection to patients who choose to have breast reconstruction in connection with a mastectomy? That’s right. It’s the law. You have the right to choose breast reconstruction, nipple reconstruction and a areola tattoo and have insurance pay for it.

After my mastectomy, pathology reports showed markers of a different type of cancer in my other breast. I would likely have developed cancer in the other breast as well. This law allowed me to have a double mastectomy with reconstruction of both breast. I never knew that. One of my concerns when making this decision was cost. My doctor told me about this law right away. 

Visit CMS.gov for more information.

Are YOU practicing a monthly self breast exam?

“Love the life you live, live the life you love”