Lets Not Talk About It

I can talk about a lot of things.

I can talk about nipples, I can talk about breasts.

I can talk about surgeries and implants and tissue expanders.

But, it makes my knees weak to hear someone describe in detail how a reconstructed nipple is formed (cut an "s" shape, twist those pieces around and sew them together) or how incisions are made and breast implants or expanders inserted.

When my plastic surgeon says things like, "I need you to be size x so that I have enough skin to cover a size X implant". No. I am sorry. I cannot hear that. I cannot hear how you are going to stretch my skin and the types of sutures you will use to put it all back together.

Don't think you can do anything to me under light sedation "just enough to relax you" because I do not want to hear noises, feel tugging or other sensations, or anything else that there is even a slight chance I will remember. Just knock me out and get it over with. I don't need the details.

When you come here and don't want to read the details, just hit that little X up in the corner, OK? 

Just a Bra

Today I am doing some much necessary cleaning; things that haven't been done in months but now that I'm feeling so much better its time to get them done. Besides, we're having people over tomorrow night so its a good motivator.

I can't believe the pile of clothes, shopping bags and just odds and ends of life that have accumulated in this corner of our bedroom. I started sorting everything into piles, getting distracted here and there by my finds.

And then I found the bra.

I haven't worn a bra in two months. Not only do I not have breasts, but even if I did, I couldn't wear a bra if I wanted. I have these rolls of extra skin and fat under my arms, left over skin that used to cover breast tissue and lymph nodes. In the breast cancer community these flaps of skin are referred to as "mud flaps". As my tissue expanders are filled some of that skin will be pulled forward, the rest will be removed at the time of my final surgery. They are very uncomfortable and awkward, and they make certain clothing, like bras, impossible for me to wear.

I never liked wearing a bra. In fact, I would buy clothes that allowed me to get away with not wearing one just so I could be more comfortable. But today, this bra, has brought me to tears for the first time in months. It is a symbol of how my life has changed since cancer.

On the outside I may seem like the old me, but on the inside…on the inside I am a very different person. I am battered and bruised. My mind and spirit are scarred. But, like a good make up artist, I can hide my scars from the rest of the world, for the most part living my life like I used to. But that one day that I stumble upon a bra I used to wear can bring me to sobbing tears in the middle of my bedroom floor.

Awake!

This post courtesy of Norco (pain meds) so I claim no responsibility for errors or inappropriate content.

If you are ever visiting with me in person, and I offer to show you my boobs, don't freak out. They're no different to me than my knees now. I forget that is not the case for whomever I speaking with! LOL

First I had an important meeting in the morning, then race home to get Dean.

We arrived at the surgery center exactly on time, check in took just a second and we were brought back to the pre-op area. The nurse came in to do her things and go over the list of things I was scheduled for. She got to "bilateral nipple removal" and I said. "I've decided to keep them for now."

Then my surgeon came in. She told me the fluid she aspirated from my right breast last week came back with infection and they cultured it to make sure they're treating it with the right antibiotics. However, because we're now opening that area it is very possible I will develop much more significant infection so I will need to make weekly visits until I'm past the risk period.

Then I told her I decided to keep my nipples. She was ok with it, however she pointed out the problems with my left nipple - the one that pointed west - and why she thinks it will be a problem when I have my exchange surgery in a few months. So, with that, I said goodbye to my nipples yesterday.

In surgery she first started on my left breast to avoid spreading infection from the other side. She cleaned up a LOT of scar tissue. She also ended up replacing the tissue expander on that side as a precautionary measure due to infection risk. She also removed the nipple.

On the right side there was even more scar tissue than the left, which is what pulled the tissue expander  over under my arm. She drained a lot of fluid out, removed the nipple and replaced the expander.

After surgery I was in A LOT of pain. A 9 or 10. They gave me another boost in my IV to get me home (this was an outpatient procedure) but ti didn't really cut it. My doctor came to check on me and offered to send me over to the hospital because my pain level was too high. After discussion with Dean (because I was not clear headed) she gave me a written script for some really strong stuff and bump though my IV to get home. Unfortunately there were problems filling that script and my pain level was climbing. Eventually we got it sorted out and I was able to sleep the whole night.

This morning I'm feeling much better. Pain level is very tolerable and I just took my next dose of meds. My range of motion is already better than it was before surgery! All that scar tissue was causing a lot of problems. But today I can raise my arms over my head, and the "iron bra" sensation is gone. Well, at least I'm not noticing it with pain meds on board.

In the end, this surgery was not only necessary because of the infection and ruptured expander, but so very much a relief getting all that scar tissue removed.

I have to add a HUGE thank you to our friend Roc! She got all our kids off buses, made dinner and generally did an excellent job of keeping the kids occupied. Thanks so much Roc!!!

Here we go again

Tomorrow I get to have have surgery again. Yay me! (said dripping with sarcasm)

Two weeks ago I went in for fills to my tissue expanders. My plastic surgeon noted that my right expander had shifted some and I also had a seroma.  While she was able to add 50cc to the expander, she also drew off almost that much from the seroma.

One week ago today I noticed the incision line on that side, which was well healed, was starting to look different. Several years ago Angela had a series of surgeries and infections, and I recognized that my scar line was doing the same thing. It was getting slightly wider, had changed color just a tiny bit, and I could see very small patches of yellow behind it. Yellow is fluid collecting.

On Weds last week I went in for a fill but knew I wouldn't be getting one. My surgeon took one look at my right side and declared a problem. She tried to pull fluid out of the tissue expander but there was nothing when there should have been about 175 cc. The expander has ruptured. The seroma is also quite large now.

We tried to get surgery scheduled for Friday last week but we just couldn't get it done. Instead I'll be having surgery tomorrow (Monday) morning I'll be having surgery to 1) remove and replace the ruptured expander 2) clean up all the tissues 3) remove some of the scar tissue that is causing me to have very limited range of motion on that side. We discussed also removing my nipples since she'll be there anyway. I had said I wanted to do it, and then I changed my mind about 500 times since then. I will have another surgery sometime in February to exchange my expanders for implants so I might just wait until that time.

I'm very anxious for tomorrow's surgery. The tissue expander is now all the way under my arm with a large collection of fluid. The bulge is about the size of a softball. I've been extremely uncomfortable and unable to sleep. Time to get this fixed! 

Tissue Expander Fill

Today was the first of what will be many fills to my tissue expanders. If you're on my Facebook you know by my status this morning I was having a lot of anxiety in anticipation of this event! I'm still in a fair amount of pain with occasional severe shooting pains. Those shooting pains happen when the implants rub up against a rib or muscle. I just couldn't imagine adding more pain to what I already have.

Here is what the tissue expanders look like. The backside is hard plastic. The black circle is the port where the needle is inserted to add fluid.

This picture illustrates how the implants are placed in the chest behind the muscle. You can see how the plastic edges would rub against the ribs.

Here is what the fill process looks like. As you can see, this woman is nearly finished with the fill process.

I am happy to say I had myself all worked up over nothing! Because the skin on my chest has absolutely no sensation, I didn't feel the needle stick at all. The doctor put in 150 cc of fluid and all I felt was a slight tugging sensation on my chest. She was only able to fill one side. The other side is still draining a bit and has a lot of swelling so it will wait until next week. I was told by tonight I will be sore and may have some muscle spasms so I took a muscle relaxer right away. So far tonight I'm a bit sore but nothing like I expected.

And then I came home and did something I haven't done in a month. I went to take a nap, and sorta kinda laid ON MY SIDE! YAY ME!

Thanking God for this small break!

Next week: Fill number 2, and a step closer to done!

Post Op Recovery Continued

Yesterday I called my plastic surgeons office to say, "Hey! I am out of drugs and I am  not ready to be out of drugs." I was still in a lot of pain and really just in a really bad place. I was in tears all the time and could feel myself sinking into depression. No….no I think I was already there.

My plastic surgeon wanted to see me as soon as I could get in. Her first words, "You don't look well, and certainly are not yourself. What is going on?"

We went over everything, and here are her conclusions about what could be going on:

1) In my previous post I mentioned the breast surgeon who did my mastectomy wasn't able to leave enough tissue on the sides to cover the tissue expander so they had to use the alloderm. It could be I'm having a reaction to that, which slows healing. This is usually temporary but does involve more swelling (and the pain that goes with it) than if it hadn't been used.

2) Sometimes it doesn't work to save the nipples. The one on my cancer side looks great (well, this is a relative term because it looks like the shriveled end of a lemon right now) and the color is good. But the nipple on my cancer-free side doesn't look the same. Parts of it are black (black! It is pure  nastiness)  and there is a lot of swelling behind it. The Plastic surgeon wasn't concerned about the color as much as the swelling. More tissue is needed behind the  nipple to keep it alive, and sometimes that tissue becomes full of edema. It is a very good possibility when I go back next week she'll decide I need to have another surgery to remove the nipples. I'm ok with that. I tried. I just want to not be in pain.

3) I have, in her words, "extremely well developed pectoral muscles" and am told it took quite a bit of force to create the pocket to place the tissue expander behind those muscles. Once the expanders are placed they are supposed to be filled a little bit. My doctor wasn't able to put as much saline into them as she normally would because it was just too tight. It could be my body is just not happy with that assault and just needs more time to adjust.

4) I just finished chemo. Although my last treatment was two months ago it takes a lot out of your body and makes healing go differently than expected.

5) Everyone reacts to surgery differently. Although I've done fine with previous surgeries, this one is pure hell.

She changed my drugs around a little bit and I'll go back to see  her on Weds next week. Hopefully both my drains can come out that day. If there is one thing that drives me crazy, its these damn drains! 

Day 13 post Bilateral Mastectomy

Disclaimer: Please remember that my cancer related posts aren't just for my regular readers, but for those searching for information because they or a loved one have been diagnosed. My posts are very honest, and I don't believe in leaving out details that someone may find helpful. So, if you're squeamish, or can't handle me talking about what used to be very private parts of my body, then you should hit that little x in the corner now.

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So, my bilateral mastectomy was done 13 days ago. 13 very very long days. First, let me describe what was done so my later explanations will make more sense. 

1) On my cancer side the breast surgeon went in through my old incision (from lumpectomy back in April) to remove all the breast tissue, which he compared to building a ship in a bottle. If you're not familiar with breast anatomy, that tissue goes back under the arm as well as up the chest wall a bit. Because he was able to use the old incision he didn't have to do any cutting on the nipple itself. 

2) On my non-cancer side a standard incision was made. That runs from the side of my breast from the armpit to the nipple, then around the nipple edge. During the entire procedure of removing breast tissue it is looked at under carefully to make sure no cancer is found. 

3) the plastic surgeon then stepped in and did her work. She placed tissue expanders behind the pectoral muscle that will be slowly filled over the next couple of months and later replaced with implants. Unfortunately the breast surgeon wasn't able to leave enough tissue at the sides of my breasts to cover the tissue expanders. Because of this Alloderm was used to rebuild those areas. 

4) a drain is placed in each breast which allows fluids to drain off. Each drain must be producing less than 35cc in 24 hours before it can be removed.

My surgery was on Friday, Sept 12 and I came home on Sunday. I was moving pretty well, better than usual for that stage after surgery. And it all went downhill from there. 

I was doing ok until about the one week mark when my pain level went crazy. I was at a "10" several times over a 24 hour period. When I was able to talk with my doctor she made an immediate change in my pain meds which was a huge relief. 

Still, coming to the 10 day mark I knew I was not where I should be, and actually felt like I had gone backward a bit. My range of motion was diminishing and I could feel lots of cording starting in several places under my arms. Anyway, a couple days ago I started cutting my drugs in half and moving to over the counter drugs. Plus, one night in the wee hours it occurred to me the muscle relaxers I was taking are evil and I decided to break up with them. 

And here, I am, day 13 with "issues". Like, I'm still in a  lot of pain. FAR more than I should be at this stage. I should be moving pretty much normally but I very much am not. My drain output is still high for this stage. I will say, I have had another very difficult surgery done 5 years ago by this same plastic surgeon and I knew what to expect. This is beyond that. Today I went back to the doctor….

One week

In one week part of my life will change.

In one week my body will change.

One week.

In one week I will have my breasts removed.

I don't have a lot to say to anyone lately. I really would like to completely disconnect from the world and play hermit.

Take that, cancer!

Its done! Chemo is done!!

I had my last treatment on July 17th. Unfortunately the fatigue is cumulative with each round, so even though I did not have that evil Neulasta shot - so no bone pain - I am still dealing with some fatigue on day 14. (normally its gone by day 10) I had one day that I was feeling pretty good, and even posted something on Facebook about being back. Apparently it was caffeine talking. A couple days later my counts dropped further and I got sick. Today my neutrophils are at 400. I've been on a broad spectrum oran antibiotic for a week and will continue for a few more days. Without that I would be in the hospital on IV antibiotics.

Anyway, even though I'm still dealing with some side effects, chemo is done, and that is a huge thing! Clearly worth celebrating!

I have spent the last four months researching all of my option related to mastectomy and reconstruction while taking into consideration the risks associated with each decision.  I was, and still am, happy with my own boobs. I just don't want them to kill me. I have a 1/4 chance of getting cancer again if I leave them alone. I don't want cancer again.

Today I met with my plastic surgeon, Dr. L. I have used her in the past and knew she did breast reconstruction. She did her plastics training at Mayo clinic, and she is awesome! I have to say, my boobs are really the only part of me that I truly am happy with. I am NOT happy to be faced with the decision of whether or not to do a mastectomy.

First Dr. L.  looked at the size and shape of my breasts and the current scars from my lumpectomy and lymph node biopsies. Most women want to have a shape similar to their natural breasts. Based on where my scars are she thinks I am a good candidate for nipple sparing surgery. This is a big deal, because it means the end result is much closer to a natural breast. I really want to be comfortable looking at my own body, much less my husband. It is impossible to know until the doctors are in surgery and can take a good look at the nipple and surrounding tissue, but for now it looks like a good option.

Because there isn't cancerous tissue involved I can have reconstruction at the same time as mastectomy. That means as soon as the breast tissue is removed the doctor would place a tissue expander under the muscle of the chest wall. This would be left in for several months and slowly expanded through a port similar to the port in my chest. Once they're the right size (similar to my current natural size) I would have another out-patient surgery to exchange the expanders for implants.

Next we talked about the type of implants she recommends for me and why. I have been researching implants for months now. Who knew there were so many? I thought I had decided I would prefer a cohesive gel implant, but once I got to ask some questions and see them for myself I don't think so. I was able to feel all the different types of implants and see how they would look in position.  Dr. L. also explained that at the top of the chest there is often a cavity after mastectomy. She uses fat grafting to fill in that area.

Then we discussed timing of surgery. If I need to have radiation it is better to have the mastectomy done before radiation. After radiation nipple sparing is not an option. After radiation the skin will loose all its elasticity. The loss of elasticity means I would need to have a dorsal flap procedure done to have enough skin to create a breast. There is also another type of flap procedure, using abdominal tissue, but I am not a candidate for that.

Needless to say, I would prefer not to have the flap procedure done. More scaring. More risk of problems. Having radiation after mastectomy comes with its on set of problems an is certainly an issue to keep in mind, and I still need to find out if I can go without radiation if I'm having a mastectomy and have already had chemo.

I left feeling like I was, for once, doing something that was proactive instead of reactive. Chemo is reactive. Radiation is reactive. Mastectomy to prevent the recurrence of breast cancer in one breast, or a new diagnosis in the other is a proactive approach. Next week I will meet with my oncologist as well as my other surgeon (He and Dr. L would work together to do my mastectomy and reconstruction.)

There is  no way to 100% eliminate all risk of breast cancer recurrence or to eliminate the risk of developing cancer in the other breast, but mastectomy is as close to zero as a woman can get.