First Fill

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Today was my first expander fill.  The surgeon used a tiny magnet to locate the center of the port under my skin, that made a tiny x on my skin when he pressed down.

20 gauge needle

20 gauge needle

He then stabbed a 20 gauge needle into the port and used a caulking gun to inject somewhere around 100mL of saline into each side.

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Expander-filling caulking gun

I didn’t feel the needle going in at all, and all I really felt was pressure as the expanders filled.  He said I should expect more pain tonight, and offered up meds, which I rejected.  I can take some of my leftover Valium or Oxy if need be, but so far I just feel mildly sore a few hours later.  They also feel heavier than before, and are visibly bigger.  Good, now I don’t have to look like a little boy.

The next fill will be in two weeks.  Once I decide on the ideal implant size, I will get one additional fill to expand to make sure there’s enough space for corrections and the fat to soften the edges.  I haven’t decided if this is the ideal size.  I will take the next two weeks to try on some clothes and bras to see how it looks and feels.

Post Fill

Post Fill

What does it all feel like?

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Basically everything I read prior to surgery about the pain and recovery was a big damn lie.  About the closest thing I read was one woman’s account of it feeling like being hit repeatedly in the chest with a baseball bat.  I know that everyone is different and therefore their experiences will be different, so here is mine.

Waking up in the hospital I was groggy and confused, heavy and sore.  I kept telling the nurses I was in pain and they kept telling me that I wasn’t pushing the morphine button enough.  Meanwhile, I was up all day and night staring at the machine because I could only push the button every 10 minutes.  The night nurse was surprised to find me awake every time he came in, and he upped the dose.  Nothing.  Eventually, I was switched to oral medications, and switched multiple times, because those were not making a difference either.  Finally, on discharge day, one of the residents said that I needed Valium to control the muscle spasms, and assured me that my pain would finally improve.

At discharge, I was sent to the pharmacy to pick up drugs, and then wheeled out the door.  My pain was not under control by any means, and every pothole felt like we were going over a landmine.  I sobbed in pain the majority of the ride home and could barely make it into the house.

After the marcaine ran out, I realized that I was actually experiencing some level of relief from it and that it was now gone.  The marcaine had been numbing some of my chest, but not all of it.  Every time my muscles moved after that, they would twitch and spasm, become sore, ache and cause pain and discomfort.  My chest was still feeling a ton of pressure until the drain tubes were removed, and a bit more space was created in my chest.

At the end of my three weeks off from work, I contacted my boss to tell her I was still in a lot of pain and having a lot of pressure, and at that point I was still draining, so I took a fourth week off from work.  Every little task required resting.  Everything from getting up and eating to brushing my teeth, tidying up.  Naps were and still are essential to my functioning.

I’m at the end of my second week back to work, working part-time.  Every day I can do a little bit more, but every night I am in pain and still need the Valium to control the muscle spasms.  The Valium and rest have been the only things to help my pain.

Physically, it feels like there are rocks in my chest.  I can feel the metal ports of the expanders under my skin.  I can push the plastic material around and move portions of the rigid material under my skin.  There are hard parts jabbing my rib cage, especially below my arm pits.  If I get cold, and start to shiver, my muscles twitch uncontrollably, moving part of the expanders.  If I overuse my muscles at work, again, my muscles twitch uncontrollably and move part of the expander.

Psychologically, it’s painful to look in the mirror, because I can’t imagine the end result.  Everything is scarred and deformed.  I’m not afraid of the scars, but I definitely am not adjusting to lumps that are not shaped like boobs.  It is difficult to imagine my body looking the same in bras and corsets, as the expanders lack any flexibility whatsoever, so I’m stuck wearing nursing sleep bras at the moment.

I haven’t had any fills yet, and my last meeting with the surgeon made it sound like I wouldn’t need any.  He tapped my boob and said he could fit a larger implant in.  I plan to discuss this further at my next appointment in March, because I was told I was only at 3/4 of my final size and I can’t imagine fitting an implant in that’s much larger than what’s in there now.

While I’ve come a long way to controlling my level of pain, and my body has done a reasonable job at healing, I’m still in pain every day.  I don’t think I was adequately prepared for the level of pain, discomfort and emotional distress that this whole process would cause.  In the end it will all be worth it.

Pathology Results, Photo Update (Graphic)

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I met with my surgical oncologist today.  The pathology results are in.  Benign.  While there were cysts, microcysts, fibroadenomas, columnar cell changes, etc., the results are still benign.  No more worries about current cancer, no indication of cancer starting.  No more mammograms, no more breast MRIs.  From now on, I am to monitor by feeling my skin for lumps, because most any new cancer that would or could possibly form, would be just under my skin, because not every single breast cell can be guaranteed to be removed during surgery.

The incisions and skin look great, according to the surgeon.  My chest and skin feel extremely tight and uncomfortable, but, this is normal.  Expanders are rigid, unforgiving and very uncomfortable.

Here is what the incisions, rather, scars, look like 24 days post-op.

24 days post-op prophylactic mastectomy and stage one of reconstruction.

24 days post-op prophylactic mastectomy and stage one of reconstruction.

The expanders are only partially full, and my first fill will be in 12 days, assuming the plastic surgeon approves on our next follow-up appointment.

Post-Op Day Two (GRAPHIC)

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This day started with a little bit more rest and lots of visits from doctors, interns, and whomever else felt the need to wander into my room.  The bitch nurse was still bound and determined to kick me out as soon as possible, though she couldn’t give me a time or any other information.  She told me I could put my pants on, but keep the gown on.  She asked me to take another walk, this time it was really fun because I was alone, and dizzy.  Nobody seemed at all concerned to see the girl with the ‘fall precautions’ bracelet shuffling down the hallway carrying her fanny-pack of marcaine.

Catheters for the marcaine infusion.

Catheters for the marcaine infusion.

Black bag filled with approximately 5 days of marcaine anesthetic to bathe the inside of my chest, two  (Jackson-Pratt) drain bulbs with a small amount of fluid.

Black bag filled with approximately 5 days of marcaine anesthetic to bathe the inside of my chest, two
(Jackson-Pratt) drain bulbs with a small amount of fluid.

After returning from the walk, I decided to empty my drains.  This consists of stripping the blood and clots from the tube into the bulb and then dumping out the bulb and measuring and recording the output.

I slowly gathered my belongings in anticipation of leaving, and I’m glad I did.  The nurse arranged for someone to transport me to the pharmacy in a wheel chair, and then to the entrance to be picked up.  Meanwhile, the surgeons each came to take one last look.  Both were very proud of their work.  Um.  I would hate to see the work they aren’t proud of, because all I see is crooked, lumpy frankenstein boobs.

Results, approximately 24 hours post-op for prophylactic bilateral mastectomies with stage one reconstruction with expanders.

Results, approximately 24 hours post-op for prophylactic bilateral mastectomies with stage one of reconstruction, expanders placed.

Pointing to the ridge of the edge of the expander.

Pointing to the ridge of the edge of the expander.

So according to the surgeons, this looks great, the skin looks good, incisions look good, everything is draining properly and there are no signs of infection.  Time to go home.

I sat in a wheel chair and a woman helped carry my bags while wheeling me down first to the pharmacy, then to the entrance.  Each bump, threshold, rug, concrete floor junction shot a sharp pain through my body.  It’s okay, because before I knew it, I was being helped into a warm car, nestled in with a pillow,ready for the short ride home.  I was looking forward to my new recliner,my own food and drinks, my own schedule.  That was quickly overshadowed by the excruciatingly painful experience of feeling every single bump, patch of snow or ice, every pot hole.  Every muscle in my chest was being jostled and tensed up and all I could do was bury my face in my pillow and hope that I got home soon.  The whole way to the house I was sobbing in pain, and I could barely get out of the car.  I think this is a sign that perhaps I was not adequately controlling my pain and perhaps another day in the hospital to work out the proper regimen would have been appropriate.  It was too late.  No way in hell was I going anywhere in that state, with that amount of pain. Time to take some drugs and try out the new recliner.

Meeting with the surgeons

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It’s the strangest thing meeting with people for surgery preparation.  They are all very apologetic.  They have read my chart, they know I do NOT currently have cancer, and yet, they make a big, huge deal and all feel the need to say, ‘oh, I’m sooo sorry that you are here,’ or, ‘I’m so sorry that you have to be in this position,’ or, ‘I’m so sorry to hear you have the mutation.’  Up until now, everyone that I’ve met has been happy and upbeat, with a ridiculously positive attitude, happy to do what’s best for me.  So, this is an adjustment for me to be the one with the positive attitude, reassuring people that everything is fantastic and I feel great about my decision.

The first surgeon that I met with was Dr. Todd Tuttle.  He is the breast surgeon who performs the mastectomy.  His job is to remove as much breast tissue as possible, and then send away samples to the lab.  His surgery takes approximately 2-3 hours to complete.  He was pleasant and our meeting was short, to the point, and after answering a few questions, he asked me when I wanted to come in for the surgery.  He also referred me to the reconstructive surgeon, the one with the briefcase full of boobs.

Top: Expander Middle: Samples of silicone gel implants Bottom: Measuring tape, caliper

Top: Expander
Middle: Samples of silicone gel implants
Bottom: Measuring tape, caliper

The second surgeon that I met with was Dr. Bruce Cunningham.  He is the reconstructive surgeon who will be in charge of building my new breasts.  His job is to make me look as womanly as possible with my own skin, fat and ultimately the help of implants.  This appointment was much longer, because we had to discuss what options were available for me.  There was also a resident in this appointment who was being quizzed by Dr. Cunningham on her knowledge of the process and why he was doing what he was doing.  At first, the ideal procedure was laid out, that I will have expanders placed during the initial surgery and implants down the road.  He also discussed the other options which I have no interest in, which take advantage of my own muscles as a source of tissue, as well as areas of donor skin from my body for if this doesn’t work out as planned.

Again, I got to put on a useless pink gown, and have my chest examined.  Dr. Cunningham took measurements of my chest, breasts, distances, etc.  After looking at my chest, he decided that I was not a candidate for nipple-sparing mastectomy, as, he would not be able to create a good appearance with the way my skin heals and creates stretch marks, rather than bouncing back.  It’s okay though, they would be useless and numb and I would rather have nice looking fake boobs without nipples than have googly-eye nipples with bad placement.

I will have skin-sparing mastectomy, to preserve as much skin as possible to support expanders, and it was explained to me how they will image my skin before the procedure to map out blood vessels, there needs to be adequate blood flow to the skin in order for it to be used.  The filling of the expanders will stretch out, not only the skin, but the muscles and blood vessels.  After the expanders are filled to appropriate size, the second procedure will be performed to swap the expanders for the (semi-)permanent implants(implants only last about 10 years or so and then need to be replaced!).  This will happen a few months after the initial surgery, and the same incision will be used to open me up.  The doctor will also make whatever adjustments are necessary to make the new boobs symmetrical.  The new boobs will be filled with a silicone gel.