Breast Reconstruction

I have surgery scheduled for Dec. 11th, 2012, to swap out the tissue expanders for silicone breast implants. This final breast reconstruction after  mastectomy is a big milestone that symbolizes (at least for me) that I have almost completed treatment.

The reason I didn’t have the breast implants placed at the time of surgery is because I needed to have radiation (which would damage the implant). The reason I have had the expanders in for over a year is because my plastic surgeon wanted to wait until the effects of radiation have fully subsided before performing the final surgery.

I know people have been curious about what the process looks like, so I pulled a series of photos that I think represent the process that I am undergoing: double mastectomy with immediate partial reconstruction (tissue expanders), followed by silicone implants, then nipple reconstruction, then nipple tattoos.

Thanks to these brave women for sharing these photographs (no, none of these photos are actually of me!) Here is what my reconstruction process looked/looks like:

This gives you a pretty good idea of what things look like post mastectomy surgery once you take the bandages off (although, I don’t know why this girl has her bandages off in the hospital, I didn’t take mine off for a few days). The tissue expanders are in place if you have partial reconstruction at the same time as your mastectomy surgery (which is what is shown here and what I had done). There are surgical drains that stay in for a week or two to drain excess fluid (yea that sucked).

The tissue expanders are synthetic teardrop-shaped pouches that are inserted under the skin to create the form of a breast. The pouch is made of silicone, and is filled with saline (salt water solution). The expander is an elastic bag equipped with a fill tube and a valve. After the expander is inserted in place, it is filled with a small amount of saline. You’ll return to the plastic surgeon’s office every week or two to have more saline injected into the expander. Gradually, over three to six months, the skin and muscle will stretch, just like they do over the abdomen during pregnancy. In order to achieve the most pleasant shape and feel for the reconstructed breast, the expander and final implant is usually placed under the muscle, rather than directly under the skin (info for this paragraph taken from, written by a physician).

The tissue expanders are then swapped out with silicone breast implants. This is the surgery I am having on Dec. 11. Of course, the size of the breast implants is decided upon by you and your doctor. In my case, I am sticking with my original size, although you can go smaller or larger depending on your preference. On the side that was not treated with radiation the surgeon will use the same incision point that was used in the original surgery, but on the radiated side, she might make the incision below the breast in an area that didn’t receive as much radiation as my scar.

After the implants are in place, you can choose to have nipple reconstruction. There are many different techniques utilized for this and it can include either just the nipple (as seen in this photo) which is created with either a skin graft or by folding existing skin on the breast or the surgery can also include a raised areola (which I am not going to do). Note: This photo is not the same woman that is shown above.

The final stage of breast reconstruction is tattooing. There are many tattoo artists that have started offering this service and I have heard they are typically better than the tattooing that is offered at the plastic surgeons office. This photo is the same woman that is shown above. The areola is created with a 3-D tattooing technique. You can also skip the above step and just have 3-D nipple tattoos.

Here is a close up of the nipple tattoo. Pretty amazing. The nipple mound was created with a skin graft and the rest was done by the tattoo artist. These tattoos were done by a local Baltimore artist named Vinnie Myers (who has recently moved to New Orleans–bummer!) Vinnie was recommended to me by my friend Barb, she has a friend who is a radiation oncologist, a breast cancer survivor and a customer of Vinnie’s, Barb’s friend says he is the best around. I might have to go on a nipple tattoo road trip down to New Orleans…who is with me?!! 🙂

Here is an interesting article on Vinnie:

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Getting cancer is expensive and it’s a shitty part time job dealing with all the bills.

How’s that for a title?

A week or so after being diagnosed with cancer, I knew I was going to be inundated with medical bills. To stay ahead of the onslaught of paperwork, I created a very organized system of folders; Insurance Statements, Medical Bills- Pending, Medical Bills- Paid. All the bills that come in go into the “pending” folder and they stay there until I get a final notice that they need to be paid (no this is not my usual approach to bill payment, but there is a method to my madness).

In between the first bill and the “pay me now or else” final bill, you will receive about a dozen copies of the same bill. You will notice that the first bill is almost always for the full amount (before they submit the claim to insurance) and that each bill that follows shows deductions as the amount is negotiated with the insurance company (and as they work through mistakes). If you pay the full amount right away, good luck trying to get a refund. As new copies of the same bill come in, I replace the new copy with the old one in the “pending folder” so I don’t have a back up of duplicates. Once the insurance payment is fully cleared and the bill is really final, I pay it and move the bill to the “paid” folder. This seemed to be working well.

I got a call tonight from a man named James who “just wanted to take a minute of my time.” I assumed he was probably calling about something election related and was about to blow him off, but he quickly jumped in saying he “had my social security number, address and phone number” and was calling on behalf of Sibley Memorial Hospital as I had an outstanding balance that they sent to collections. WTF! ARG!!! The call was so slimy, you have my social security number? What a shitty thing to say. Anyway, he said he would give me a $150 discount if I would pay the full amount by Friday. I felt like I was being shaken down by a bookie. I checked my files and didn’t see any past due amounts or any letter from this “Nationwide credit corp.” James claimed that this overdue amount was from Jan. 2012 (almost a year ago!)

So now I have to call Sibley tomorrow and figure out why I didn’t know about this. My big fear now is that there are other bills out there, lurking, waiting to pounce on me. Also, I have been in touch with Sibley to pay bills as recently as 2 weeks ago. You would think they could say, oh you also have a $600 overdue amount from January, can you settle that one too. C’mon! I didn’t need to have that conversation with James tonight.

I don’t know how people deal with this shit. I am pretty organized and careful and I guess I don’t have a handle on all the bills. I am pissed.

That is all for tonight.

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Life after breast cancer treatment.

I took a break from writing and from support groups and tried to pack up the whole breast cancer experience, tie it up tightly with a nice bow, and tuck it away on a high shelf. I have a friend I made in a young women’s support group at Sibley (I’ll call her CA). CA and I were diagnosed at about the same time and have gone through very similar experiences. Every once in a while we check in with each other and it reminds me that it is important to stay open, connect with people, and connect with your feelings.

CA had a really remarkable way of explaining how she was grappling with her emotions post breast cancer treatment. Her words really resonated with me and I asked her if I could share them:

“I think I have come to the point where breast cancer and all its memories are in a ‘box’ and occasionally pieces slide out and surprise me when I least expect it.  Other times the box is hurled open and everything from day 1 to now comes rushing back.  And sometimes I sit down, open the box, examine the contents, react, and then put it away again.  It’s really strange.  I have never tried so hard to forget something so big, and of course have never had anything so big happen that didn’t drastically shrink as time went by. I rarely talk about any of this with anyone around me (part of my routine to forget) but sometimes I do kind of want to shake it all out with someone that has been there (is there).”

My breast cancer box was hurled open a few weeks ago when I went in for some testing at Georgetown hospital.

I have been having stomach pain on and off since March. Recently it’s gotten a bit worse and when I went in for my oncologist check up, the doc decided that I should have a CT scan to check it out. Dr. Isaacs is not a proponent of over scanning because of the false positives and stress it causes, so she stewed over whether or not to order the test, but decided that it was necessary.

My mom went with me to the appointment and I had my tough all-business armor on. I was called back and followed a technician into a bleak looking waiting room where he had me drink a huge container of barium, a syrupy sweet beverage that tasted a bit like Gatorade concentrate (I was actually relieved it wasn’t the same beverage I had to drink for the pet scan, which was milky and chalky). After about 20 minutes, the technician came to get me and led me into a different room to change into a hospital gown. As I changed out of my clothes and carefully tied on the billowy gown, a rush of unexpected fear and sadness washed over me. Being back at the hospital was more emotional that I thought it would be. The tech lead me into a huge cold room with a tremendous metal table and doughnut shaped cat scan machine. I felt dwarfed as I hoisted myself up onto the table. A nurse came in to get an IV started in my arm and commented on my small veins, “hmmmm, how am I going to do this?” he said, as he tapped firmly on my arm. “Hmmmm”, he continued “…open and close your fist…did you have an IV on this side before? I don’t see how they did it…” The nurse left and called for some back up. A new nurse came into the room, accessed my small vein situation, and decided to insert the IV in the top of my hand. The thought of this really bothered me, I had managed to have IV’s and blood draws on my right side a million times last year and now all of a sudden I have a new problem. As the nurse put the IV in my hand it stung and burned. “Good job” he said to me “are you OK?” I nodded, but before I knew it I had tears streaming down my face. The nurse left the room and a voice from outside the room asked me to raise my arms as they slide me into the cat scan machine. “Take a deep breathe in and hold it” the voice instructed in a soothing tone, here we go I thought, I hope they don’t find anything bad! I continued to cry through the whole scan and the docs and techs didn’t look a bit surprised about it.

The next day I got a call from Dr. Isaac’s nurse asking me to call her. Uh oh, when you have normal results they tell you on your voice mail. My heart raced as I called the nurse. She explained that they found 2 spots on my liver. One of the spots is a cyst and the other is so small they can’t tell what it is. The nurse assured me that this is likely benign and not to worry, but that I would need to be retested again in 3 months. Oh and on top of that, the scans didn’t show any indication of why I would be having stomach pains, so I need to go to a gastro doc.

OK, so life after breast cancer isn’t perfect, but life isn’t perfect and I am dealing with it. Thanks Mom for taking such good care of me and thanks CA for checking in with me at the perfect time.

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Hair update.

So, I am rockin’ a short haircut now that actually looks like a real haircut. The hard part is going to be letting it get past the awkward phase. I have cut it twice since it’s grown back in, but I think I am just going to have to let it get weird for a while if I want to grow it out. New pictures to come soon.

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One Year Anniversary

Exactly a year ago today, I had a double mastectomy at Sibley hospital under the excellent care of Dr. Colette Magnant and Dr. Kathy Huang. My parents, my husband, my brother and my in-laws were right by my side and I was surrounded by the love of friends and family. Even though treatment continued until January 2012, I think I was cancer-free after surgery on June 15, 2011, so I am officially marking this as my anniversary.

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Phantom Nipple.

OK, so sometimes I get the sensation that my nipple is still there, or I literally get an itch that I can’t scratch. You know how amputees get the sensation of a phantom leg or phantom arm? I literally have phantom nipple on occasion. If I think about it too much, OCD starts to kick in and I want to scream, but then I breathe and the feeling passes. I confirmed it with my doctor, and I am not nuts, there really are severed nerve endings that remain active. It’s totally weird.

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Cancer time bomb?

I actually hesitated to write this post thinking future employers or insurance companies might read this and discriminate against me, but then I thought what the hell.

A yearly trip to my gynecologist proved to be rather stressful. Dr. Shuster is very thorough and very careful. She hadn’t seen me since diagnosis and treatment and she really wanted to pour over my chart, analyzing my family history, looking at things from every angle. I actually do appreciate how careful she is, if it were not for her practice, I probably would never have found my breast cancer so early, but I wasn’t expecting such a onslaught of concern. Not about breast cancer returning, it seems like I have probably taken care of that one, but because of the particular clusters of cancers in my family, she said she wanted to screen me for pancreatic, colon, ovarian and uterine cancers regularly. Eh, what? Not exactly what I wanted to hear. It also got me worrying about my brother, prostate cancer is in the “cluster” and I started to feel stressed out about a possible family plague. Dr. Shuster also raised some concern about the increased risk of uterine cancer while taking Tamoxifen (the anti-breast cancer drug I have to take for 5 years) so she ordered a baseline ultrasound and is going to be monitoring that too. I left her office feeling like a cancer time bomb.

A friend mentioned a theory she has about everyone having a unique “toxic bucket.” Some people have a shallow bucket and they can’t tolerate as much pollution, carcinogens, stress, lack of sleep etc… This kind of resonated with me. I think I need to be more careful not to fill up what might be a genetic shallow toxic bucket. I have fallen back into some bad habits; overworking, skipping meals, stress, lack of exercise. It’s hard for me to balance it all. I think I need a vacation.


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Caring for caregivers.

All things considered I had it pretty good. My wonderful parents were near-by and at my side at every turn. My husband kept steady and calmed me down when I needed calming. My brother performed healing rituals on me that involved an abalone shell, chimes and feathers. My dog kept me walking and laughing. My friends let me vent and talk about my feelings even more than I usually do. My co-workers brought me good company and meals (twice a week!). And oh yea my doctors and nurses cured me of cancer!

I also was able to plug into support groups through Sibley and a great yoga class for cancer survivors. But what about support and care for the caregivers? I think that aspect of dealing with a serious illness is overlooked.

Transition after treatment is hard for the patient and it’s also hard for the caregivers. When you are battling the disease, everyone rallies around that. You sink all your energy into the fight. After it’s all over you are left feeling kind of lost and without a sense of purpose. I know my feelings are still evolving and changing from week-to-week.

All that said, I don’t think anyone exerted more energy than my mom. She was really entrenched and I can only imagine it’s terrible to see your daughter go through something like this. I worried that she wasn’t getting the support that she needed and I still worry about it.

This past weekend my mom took a trip to Stowe to visit her sister (my awesome aunt Lisa) and some other great women in my family. Lisa hooked my mom up with a makeover and some needed pampering. Then they attended a fund-raising event for Obama and my mom was actually able to meet the President! Knowing my mom had a great weekend brought me a great sense of peace and joy. Care for the caregivers! They deserve it! Thanks Lis.

In my mom's words- "A definite highpoint in life - March 31, 2012 - Burlington VT - My sister, Lisa Hagerty and I are savoring our moment with President Obama. The Three Smiling from Ear to Ear Amigos." I love it.

Me and my beautiful Ma. Always best friends.





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My first haircut after chemo.

So my original plan was to get a haircut in March, but I decided to wait another month before getting my first official cut. It is amazing how something like getting a haircut can make you feel a little bit normal again.

I went back to my usual guy Ishmael. I thought about how he gave me the greatest blow-out for my wedding day and now here I was 4 years later with hair shorter than I thought I would ever have (at least not at 35) and definitely not in the market for a blow-out. Ishmael told me he loved my short hair and we were going to have fun trying different styles while it grew out. At the end of the cut I went to pay but they wouldn’t charge me! So nice. I almost got a little teary eyed but managed to keep it together! I left the salon feeling pretty good. Thanks Georges Salon and Ishmael, you guys rock.

Here is an update on the hair regrowth. I have noticed my hair is a little more curly and maybe a little thicker than it was before. Ishmael said the color also looked a little lighter than he remembered, but I can’t tell a difference.

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Transition after treatment.

I met with a great group of women last week who were all just finishing up treatment like me. Margie Stoner, at Sibley runs some terrific support groups, and this one was really just what I needed (thanks Jennie for suggesting that I go!)

I hadn’t cried in a while and it’s amazing how the littlest things can trigger the emotions to come flooding back in. When I started describing some of the women who have found my blog and who have told me that sharing my story has helped them, tears welled up in my eyes and I couldn’t finish my thoughts. What I really wanted to say was that I am so appreciative to be able to connect with people on this deeper level. And it makes me happy to know that I have reached people and made a difference.

It seems that some of the women in the group had the same feeling I did, that this whole thing should mean something, that something amazing or profound or different should be happening in our lives post treatment. I don’t want to lose the perspective that I’ve gained and I want this experience to mean something.

I feel like I need deeper connections with people. I feel like I don’t want to waste time with pleasantries. Let’s talk about what makes us scared and what makes us happy. Let’s be ourselves without filters.

Since the filter is off, here is tonight’s stream of consciousness. I am pissed off that my left arm is getting really tight and that I am losing some feeling in my fingertips. I am pissed off that my arm and shoulder and chest that used to feel so strong and stable feels vulnerable. I really don’t want to have chronic problems. I heard the song “You’ve got a friend” tonight and it reminded my of my Aunt Deb who I miss so much. I know she would have given me the biggest hug after all of this and I wish I could get that hug right now. Writing this through lots of tears. Love you Deb and love you all.

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