Recovering from Breast Reconstruction Surgery

The surgery lasted four hours, that was the best case scenario.  I didn't realize that I would not be able to eat or drink for another 24 hours after the surgery.  This is a precaution in case I needed to head back into surgery.  I am tired and not interested in the pain medications they are offering.  I don't notice much difference in my pain, which is little, but I am hypersensitive to everything.  With the morphine, I am regularly startled by the things going on around me.

Day 2 
I am allowed a liquid only diet.  I still feel quite nauseous from the anesthesia.  It comes and goes though.  I have a local anesthetic pain pump for my leg incision which I guess is working ok.  My breast area is numb and pretty comfortable.  I feel some discomfort in the muscle at times.  One of the sore spots I keep noticing is at my sternum.  The doctor needed to cut a bit of my rib at the sternum in order to connect the blood vessel.  I have a broken rib and it feels broken.  I don't like the narcotics and have requested only Tylenol.  I am able to walk around and get to the bathroom ok.  

Day 3 

Finally some food!  I still feel bits of nausea, but food helps.  I have been ok'd to add Ibuprofen alternating with Tylenol.  Passing the 48 hour window of recovery means the flap is probably going to be just fine.  The doppler checks are spaced out and it looks like I will be leaving tomorrow on schedule.

Day 15 post op

Day 4-10
I am healing and walking around the block and feeling well.  From time to time I feel exhausted and need to rest.  My surgical areas are healing well, though I still need the three drains though.  On day 10, it's time for Herceptin again and it goes well.

Day 16
Had my "2 week follow-up" at the plastic surgeon's office.  It is still recommended that I restrict my lifting another week or so.  I can move from no bra to wearing a stretchy bra with no cup.  They still recommend keeping the donor area of my thigh wrapped in an ace bandage for compression for another one to two weeks.  There are more sensations coming back to the breast area and I have a hard spot above.  Physical Therapy would be a good idea down the road.  At home I walk twice around my neighborhood totaling 1.2 miles.  My gait is normal, the pace is getting faster, almost normal.  My daily schedule is getting more normal as well.  I can go to my appointment, the library, visit a friend and no longer need an afternoon nap.

Surgery #2 - TUG Flap Reconstruction

My surgery will entail a mastectomy. While my general surgeon is doing that, the plastic surgeon (ps) will be removing skin, tissue, fat and the gracilis muscle from my inner thigh. He will cut the blood supply and prepare it to become a breast mound - that is what they call it. After the mastectomy (removing all breast tissue, nipple, and areola), my general surgeon will leave. The mastectomy will take about an hour. The plastic surgeon takes over now. He will spend the next 3 hours doing microsurgery to reattach the blood vessels, create the illusion of a breast and sew/glue everything back together. The total surgery should take about 4 hours.

After surgery I will be in the ICU or a step down from the ICU. This is only because the new breast needs to be monitored every 1-2 hours for two days. The temperature, pulse, and color will be carefully observed. I have been told that the minimum hospital stay for this procedure is three nights. I will be having a pump of local anesthetic pumped into my thigh for pain relief. I will also have IV pain medication. Though many people do not report as much pain in the breast area because all the nerves have been cut.

At my pre-op appointment today I learned more about anesthesia and what drugs are used for that. I will be fully asleep, my muscles will be realaxed and I will have a ventilator for breathing and bringing in gas anesthesia. As always, I feel more comfortable and confident with more information.

I feel confident in my two surgeons and will allow my body to be changed by them. I will also make a conscious decision to allow the medications to come into my body and do what they are supposed to do. 

Everyone Has Something

It was early on after my parents' accident and I was going about my day on autopilot:  get kids ready, go to hospital, get kids home, go to karate, dinner, homework...  I was hardly present in the moment. My mind was focused on my parents, getting to the next the next thing, and having this little lump and wondering if it was something worth worrying about.

I had a moment where I felt like I was all alone with my experiences.  No one had ever had all this happen at once, had felt overwhelmed, had all my family members hospitalized.

It wasn't right away, but soon afterwards it occurred to me, probably no one else was in the same place as me.  However, everyone has their thing.  Everyone has something in their life which is hard and overwhelming and feels the most challenging right now. It is different for each person.  But it is hard for them and that is the key. We all know hardships, they are just different.

It might not be them personally, it might be a spouse, parent, child, close relative, or good friend.  No one is alone in their "suffering," some may just choose not to share.  I find it helpful to remember when out in the world.

The Radiation Decision

I have some concerns about the long term effects of radiation therapy.  Radiation therapy is the standard of care for someone like me who had a lumpectomy.  But I am 34 years old and I hope to live many, many more years.  I searched and I could not find good information about the potential long term effects.

One thing that is good is that it is my right breast. If it were my left breast, my heart would probably receive some radiation which could lead to problems down the road. In my situation a partial mastectomy followed by radiation would be considered the same treatment as a full mastectomy. 

Early on in my research I discovered that radiation targets active cells.  Lactating breasts are very active and that radiation might actually damage the breast more if I was lactating.

Some people believe with radiation that one is able to “keep their breast.” After being surgically altered and radiated, it’s really quite different than before and not functional in the same way.

In order to help make my decision, I sought the opinions of two radiation oncologists.  Both assured me that radiation would be an acceptable decision for me.  I actually went through the planning session with one of them and had a CAT scan and received my tattoos.  Black Indiana ink is injected just under the skin marking where the CAT scan and later the radiation machine should line up.  The black ink appears as small blue dots.  My radiation oncologist was able to show me where the radiation field would be, which part of my lungs would be hit, which ribs, etc.  

Initially I felt I would just have a mastectomy and be done.  That would give me simple and straightforward surgery with a very short hospital stay.  I could get back to my family and be done.  It's interesting to me that many woman have gut reactions when they are diagnosed to just go ahead and have a double mastectomy.  I never felt that way.  As I started to really consider a mastectomy, I felt I probably would feel better getting some sort of reconstruction.

In order to complete my research, I decided to meet with a couple plastic surgeons.  If I really wanted to compare my options, I should know what my options are.  The first plastic surgeon offered me an implant.  The second offered microsurgery of a flap of my thigh to create a new breast mound.

Part of my thinking brings me to the end result and not the process and what I'd like to be done and I usually come to the surgery. The process does not sound great, but the end result should be a better outcome in terms of cancer for me. 

The Breast MRI

Initially I was not offered a breast MRI as I was lactating.  The doctors felt that I would likely light up everywhere and the test would not be helpful.  It was not until after weaning and chemotherapy when I experienced my first breast MRI.  

As I was trying to gather as much information as possible regarding my decision to have radiation treatments or a mastectomy, I felt a breast MRI might aid in my decision making process.

I had never had any kind of MRI, but had heard about the small confines of the tube. It's pretty small. For the breast MRI, one lays face down on a flat surface with cutouts for the breasts. After some time, it becomes rather uncomfortable. The head is either to the side or looking down on a cutout. I did head to the side with pillows. Arms are above the head, but hands cannot touch;  a paper towel was laid between them. The room is very cold for the machine so lots of blankets are available too. Earplugs are highly recommended because the machine is so loud, clanking, alarm like sounds, banging. The tech and nurse are in another room accessible by intercom and a special button. When the machine is going, there's no communicating really - it's much too loud. There were series of imaging, five I think. Each one was a few minutes to seven minutes. It's very important to stay still all the time, even between imagining as not to get out of position. After the first two sets the nurse came in and injected contrast dye into my IV for the next sets. At the end they had me wait one more minute to make sure everything looked ok. By that time my neck and back were aching. Finally I got the ok to wiggle and promptly banged my head, elbows and back on the tube forgetting how small it really is. The whole thing is supposed to take about 30 minutes.

I got the results of the MRI the same day in the evening. The left breast looks great and there is one 6mm area of potential concern on the right. It’s hard to know what it is so the Dr recommends an MRI guided biopsy with contrast. This area is likely scar tissue due to my past surgery.  If I go ahead with a mastectomy, I don't see any reason to have a biopsy.  If I will pursue radiation therapy, I would need to address this area of potential concern first.  

Life Goes On

The weekly chemo treatments seem almost normal now.  The day before I make sure to drink extra water to keep my veins hydrated.  Before I go, I take a warm shower and keep my arm warm.  Getting an IV every week seems normal.  

After my first surgery, I was offered more surgery to have a port.  I was thrilled to make it through the first surgery without general anesthesia and I hoped to be done with surgeries.  The nurses who administered the chemotherapy certainly seemed to prefer ports.  I decided I would consider a port if we no longer could start an IV in my arm.  I had a lot of IVs ahead of me and needing to do all of them on one arm was certainly a concern. 

Many times with chemotherapy, the patterns of side effects seem to become predictable.  Certain days are "down days."  I found that I would get a strange achiness in my upper arms and chest for a couple days and the fatigue was always there.  It's a strange fatigue, one that doesn't get better after a nap.  For most chemo drugs, hair starts to fall out starting on day 14.  I was on hair watch and my hair didn't start then.  It wasn't until day 22 that showering became more messy and if I touched my hair ten or more hairs came out.  But I never had large bald patches, just thinning mainly in the crown area.  So I didn't shave my head.

Each chemo appointment was about the same, first a blood test is done at least an hour in advance. Usually I would go in the morning when I have afternoon infusions. It's just more convenient for me and my daughter can come along.  The blood test is to mainly see how my white blood counts are. If they are too low, I can’t have the Taxol.

Then to the IV…depending on the nurse (so far I’ve only had women), she’ll either warm up the arm or just get started. My favorite nurse always just gets started. One time I actually had to wait 45 min for someone to get started. There were mini-emergencies going on and nurses were all occupied. 

I get started with the IV and then get my pre-meds. I get Pepsid in one bag of IV fluid, then it is switched with a nurse. Sometimes there is wait time between switches too. Then comes an IV bag of Benedryl and Decadron. I have worked with my oncologist to lower the doses of Benedryl and Decadron.  I seem to do fine with the Taxol and I really don't like the side effects of these two drugs.  

Then I get a big bag with Herceptin. That takes between 30 min and 90 min. The first one is 90 min and then we’ve decreased each time. Lately it has been 30 min and that is good. Although I need to have my blood pressure taken multiple times on the same arm as the IV. It doesn't feel too good while I was getting Herceptin. It burns during Taxol, so we pause the IV during Taxol. After Herceptin comes a big bag with Taxol. That takes 1 hour. After the Taxol and sometimes at other times I may get switched over to a plain saline IV bag. After my “rinse” my IV is removed and I’m free to go! So far these treatments have lasted 3-4 hours, but could take closer to 2 hours theoretically.

During all this time, there are lovely people coming and offering drinks, lunch, fruit cup, cookies, ice cream. There is a nice tech who comes to take my blood pressure and chats. I think it’s done four times at least. Temperature is taken each time too. I sit in a comfy recliner, often somewhat reclined and there are recliners in front of me, diagonally, and to each side. Each one has curtains nearby, but almost never drawn. Some people visit and many sleep. There are personal tvs for each people with earphones. I bring my new MP3 player and listen to music for part of the time. I have a nice blanket and warmed blankets are also offered. It’s a bit entertaining to go to the bathroom, if I’m listening to my music, I have those wires, IV tubes, the IV pole which has to be unplugged from the wall.  My husband is often doing work on his laptop and sits in a folding chair next to me. I get some computer time too and can use the phone, look out the window, and rest.

Every 3-4 weeks I see the medical oncologist who just checks in to make sure everything is going well. I can also call or email her. There are also triage nurses who are available during the week for calls about just about anything.

Wig Research

Who knew that I would be learning about wigs and considering losing my hair.  Many women seem to struggle with the thought of losing their hair and I did too.

I can't imagine not being a redhead, it would be strange.  In learning about wigs, I found a local stylist who sells wigs.  She had some examples which looked very similar to my hair and she could cut it so it would look even more similar.

Taxol usually has the side effect of losing one's hair, but it is also often offered in conjunction with other chemos.  I will wait and see what happens before ordering the wig.

It's funny how when considering losing ones hair, we do see it as a temporary situation..the hair will grow back.  Many women are deeply saddened by the experience.  When considering how long it takes for hair to get long again, it feels less of a temporary situation.

Starting Chemotherapy

We decided on twelve weekly treatments of Taxol and Herceptin.  I couldn't believe I was actually starting chemotherapy.  I'm fairly content with the decision to do only Taxol and Herceptin.  It makes sense.  Doing it weekly means that I will receive less drug each week instead of a triple dose every three weeks.  My oncologist feels that I won't really have "down" days.

With this whole experience, it really takes a human to be able to walk into surgery or walk into chemotherapy and know that you will be hurt, or get sick, but also know that these steps might just save your life.  It's a very strange concept.

Preparing for the first chemo was really hard.  I had weaned off the first breast for surgery.  Now I needed to step back production again.  Because my daughter was no longer a baby, we could talk about everything.  While she heard that I would be getting a medicine that would not be safe for her, that didn't mean that she really understood and could just let go of nursing.  It's ironic, she had enjoyed sucking her thumb and nursing up until the age of 2 when I could easily discourage her from sucking her thumb.  Now at 2 3/4, I was reminding her that she used to suck her thumb and she might like to do it again.

We had a last nursing, but really our last nursing without timelines and thoughts of drugs and surgeries happened long ago.  As we drove to the hospital, I cried, because again, things were out of my control in my life and with my children and I wished it wasn't so.

Yes, It's More Than DCIS

Oh the waiting!  Waiting for the surgical pathology was forever.  I knew it would take at least a week, but the final few days of waiting took forever.  I didn't want to miss the call either.

From the beginning I wondered if the lump was more than DCIS and this pathology confirmed that it was, inside the 1.4 cm area of DCIS was a .6cm area of Invasive Ductal Carcinoma (IDC).  This was potentially a game changer.  With DCIS, I hoped to return to my life...with invasive cancer, I knew I would need more consults and possibly chemo.

This was when it really began.  Many women have a defining moment when they are told, you have cancer.  I never felt that I did.  It was nothing, then something, then something more.  But even with a six millimeter area of invasive cancer, I was in the grey area of what to do.

Once again I set up multiple appointments with medical oncologists.  I was somewhat surprised that each one recommended some sort of chemotherapy.  My options were the standard Ardimyacin with Cyctoxin followed by Taxol and Herceptin (AC + TH), or a newer option that proved to be less heart toxic Taxotere, Carboplatin and Herceptin (TCH), or a minimalist option of Taxol and Herceptin.

Chemotherapy was recommended due to the fact that I was under 35 and the characteristics of the cancer were more aggressive.  Because so much of my world at that point was babies and pregnancy, I thought it was interesting that in the cancer world, 35 is so young.  In the pregnancy world, 35 is old!  I was 34 and thoughts of more children danced in my head, not wanting to prematurely wean my child, and just wanting to be a mom to care for my children.

After much deliberation, I decided to go for the chemo:  twelve weeks of Taxol along with Herceptin.  Then Herceptin would continue for another three to nine months.

The First Surgery

The First Surgery was my first surgery.  The hardest part of this cancer journey was the fact that I had a nursing child in my life.  I'm sure cancer on it's own is not easy, but knowing that things going with my body were also having an impact on my child made it harder.

I had decided to back off my nursing on the one breast.  I figured that less milk for the surgeon would be a welcome thing.  Also if my breast was going to be very sore after surgery, I probably wouldn't want to nurse on it.

Before surgery, radioactive dye is injected into the breast surrounding the tumor.  It needs to go in at least four hours before surgery.  The dye travels the same path as the cancer might and goes toward the lymph nodes.  The surgeon looks for the “hot spots” and removes those nodes.  Many surgeons like to give the radioactive dye the day before surgery, except if surgery is scheduled for Mondays.  I hung onto that concept and even though mine was on a Wednesday, I opted to have the dye placed that morning.  The amount of dye is very small, but I was cautious about the drug being in my body and nursing Sydney.  One half life is six hours and I didn’t want that interfering with going to bed the night before surgery!  After all the details were worked out for surgery, drugs, timing…we were set to go!

I arrived at about 8:30am at the hospital for the radioactive dye.  They were aware that I was breastfeeding and “reminded” me that I should abstain for three days.  I attempted to argue with the tech because I feel that information is not correct and certainly didn’t jive with the information I had gleaned from my research.  Finally I decided not to argue, but did feel pretty upset about the encounter and it was not a great way to start the day.  I received five injections of dye at different angles around the tumor.  I had read that it burns receiving the dye and it does, but it was ok.  They were impressed with my performance and sent me on my way.

The Breast Clinic was my next stop.  At different stages my lump was more palatable than others.  The last time I saw the surgeon I was in the process of weaning from that one side and it was feeling a little funny.  The surgeon could not easily find my lump, so he asked that I have a wire inserted into the lump pre-surgery and left inside for him as a marker.  At the day of surgery, the lump felt more like marble than the dried pea it had started out as, but we went ahead and used the wire – there would be no mistakes in removing tissue.  I saw the radiologist and tech who I’d seen before at my many visits to the breast clinic.  Using ultrasound the lump was found and did appear bigger than before.  They were going to use the anesthetic lidocaine for the insertion.  I knew for my surgery I was getting lidocaine and there is a limit a person can have.  I asked if it was really needed and maybe it wasn’t.  So I opted for no lidocaine and the wire was inserted.  It is a fine almost soft wire that could be bent over and taped against my skin.  Afterwards I had a gentle mammogram to document the wire.  After the tissue is removed, it is x-rayed again and the wire position is verified again.

Immediately afterwards we’re off to the hospital!  My nursing toddler and husband had accompanied me to my morning appointments, so first we needed to drop my toddler off with my parents.

At the hospital I was hurried into an exam area.  Apparently my surgeon often runs ahead of schedule and he was that day also.  I have a friend who is an anesthesiologist and offered to be at my surgery.  He was waiting for me and made many aspects of the day more pleasant.  I had felt early on that I did not want general anesthesia for the surgery.  I had been poked and had core needle biopsies, fine needle biopsies, had more mammograms than I care to admit…and now they wanted to remove some tissue from the same area and put me under? I didn’t want that.  So my surgeon thought, ok, we can try this, but I don’t think he felt confident about me being awake.  The anesthesiologist had suggested a block for the surgery and at the time that sounded like a great idea.  Unfortunately, the block did not work for me and even gave me some strange side effects.  It is likely the entire procedure was done using local injections of lidocaine. 

I had a pregnancy test, blood work, IV inserted, blood pressure a couple times, temperature….

I was brought into surgery and asked to move onto a very narrow “bed.”  I got up and started to climb over and everyone freaked out!  The anesthesiologist assured them that I hadn’t had any sedation.  I guess they were worried about me falling.  I got into the right position and the surgeon told me he’d have to watch what he said because I was awake.  I wondered what kinds of things are normally discussed…  Some propafol was on hand in case I changed my mind about sedation and wanted to leave on some level.  I was assured that there are many different levels of sedation and I didn’t need to be totally out with a breathing tube. 

I had asked the surgeon to only use blue dye for the sentinel lymph node biopsy if necessary.  If the radioactive dye did its job, he wouldn’t need the blue dye for extra verification.  The blue dye often stays in the blood stream for 24 hours or more.  I just couldn’t find enough information about it to feel good about nursing with that in my system.

After being draped and cleaned and having my arm wrapped in a funny way they were ready to start.  My arm was wrapped so the surgeon could hold onto it easily and drape it up, down, on him and other ways I’m not even sure!  It felt like it was being supported most of the time.  I couldn’t see much because there was a blue drape in my face, but I could look to the side and see the anesthesiologist and also the door to surgery.  The door actually has a window in it, so I could look out and see people moving about the hallways.  The door was even opened a bunch of times and one nurse came and went.  The anesthesiologist had brought music for me to listen to and he also chatted with me the whole time.  I could ask about what was happening and he gave me updates too. 

The first procedure is the sentinel lymph node biopsy.  Two “hot spots” were located with a geiger counter from the radioactive dye.  He noted I had a very active lymphatic system.  I hope that’s a good thing!  The cutting is done with a cauterizer and it stinks.  There’s a burning smell and smoke.  At one point the surgeon coughed and coughed.  The anesthesiologist told me that using the cauterizer/cutter is like smoking for the surgeon.  That part was not so bad.  I felt some pulling and discomfort, but I was pretty well numbed.

After opening and removing the first lymph nodes, the surgeon moved onto the breast.  He had seen the wire and also marked me up.  Instead of a simple line, he had made a wedge shape which would change my procedure from a lumpectomy to a partial mastectomy.  The cutting and removal went pretty well.  There were a couple times that I actually jumped because a nerve was hit.  More lidocaine was injected.  At one point they needed to go and get more and calculated how much more I could actually get.  Too much can be toxic.

The breast tissue was taken off to radiology for the x-ray.  The nodes I did see.  They were like little balls of pink tissue.  

2 weeks post op

I was than sutured up.  I needed more lidocaine at the armpit (where the lymph nodes were removed) during suturing.  When everything was done, a nurse walked towards me with a large ace bandage.  I asked her what it was for, thinking it was to bind my breasts.  Quickly I informed her that I couldn’t have my left breast bound.  She hurried off to speak with the surgeon and never spoke to me about it again.  I think normally this would occur while a patient was under anesthesia.

After surgery I went back to recovery.  They took my blood pressure and I went to the bathroom.  I got juice and graham crackers, ice packs, tylenol and waited around for someone to tell me I could go.  They didn’t really know what to do with me.  I hadn’t had sedation, just a bit of benedryl to stave off any histamine reactions to surgery.  So after a very short time we left.  My husband had been brought right in to see me after surgery and the surgeon came by to tell us together that everything had gone well.  The surgery took about 1 ½ hours and the whole surgery experience took about 3 ½ hours.  This doesn’t count the pre-surgery running around.  That took about 3 hours.

Often a quick frozen section test is done on the lymph nodes removed during surgery.  If there is cancer found in those lymph nodes, more lymph nodes are taken.  I didn’t want to risk having more lymph nodes taken, especially because the frozen section test isn’t as reliable as the paraffin section tests.  I guess there aren’t too many false positives, but there are some false negatives.  I just wanted things done right the first time.  So I would wait for the test results.

My husband and I drove to my parents to get my daughter and I called my mother-in-law who had picked my son up from school and had him at our house.  At my parents house I did pump a bit of milk for comfort and also to have less milk available for my daughter because of the radioactive dye.  After a meal and some visiting, we headed home to see my son.  I had been icing the two areas and taking Tylenol.  I did feel some discomfort, but it was all pretty tolerable.  My daughter did resume nursing regularly after the surgery on the unaffected side until chemo decisions were being made.

The Waiting

Anyone who has experienced cancer knows that the waiting is the hardest.  Waiting for news, waiting for surgery, waiting for chemo.  It's the unknown that can be so hard.  Who knows how your body will react, without the complete picture, who knows who to call.  Waiting is hard.

I called, emailed, and researched as much as I could.  I was connected with women who breastfed and who didn't breastfeed.  I got the names of surgeons, I learned a whole new vocabulary.

I set up two appointments with surgeons.  Figuring I would appreciate two points of views on things and knowing that this might be a unique situation.  I also learned that a Sentinel Node Biopsy (SNB) might be a good thing to have done.

It took a week to see the surgeons, and after settling on the second one, another five weeks to the surgery.  He would perform a radial incision (to best preserve my lactating breast), attempt to get a minimum of a one centimeter of clean margin (outside the cancer), and perform a Sentinel Node Biopsy.  When I also requested to remain conscious for the surgery, he sounded willing if my anesthesiologist friend was also willing and able.