Surprises

There were many things that I thought I knew going into this having already had a mastectomy and reconstruction once and having read like everything out there on DIEP. But here are something that surprised me.

1. The bruising. My breasts are bruised all over. My arms and legs am have bruises from the shots from the blood thinners. My abdominal scar has bruising at the ends of it. They are all at varying points of healing so I am a beautiful mash up of purple, pink, and yellow.

2. Diet restrictions. I was given a strict no caffeine and no chocolate diet in the hospital. I’m not a coffee or caffeine drinker so it wasn’t a big deal, but chocolate! My heavenly hunks had to wait until I got home.

3. Rib pain. A small portion of a rib connected to the sternum was removed to have a blood vessel to connect the flap to. This area was more sore than expected.

4. Drains. I was completely mentally prepared to have 6 drains. I came home with only 2. It was quite a bonus. However, my predictions of what I would wear to manage these was so off. Last time, I loved my drain camisole. This time I struggle with it because I don’t like to have anything on my breasts initially and that zip, even though it’s not tight, still feels like too much. Also the spot where the drains are held is too high and feels like it actually hits where the drains are stuck in me. I also did not have drains in my abdomen, which was a total bonus for me!

5. Penrose drains. I was surprised to have penrose drains while in the hospital. I hadn’t heard of this before. The best way to describe them is a silicone straw stuck halfway in your body and half out. I also pictured these (because I couldn't actually turn my body or lift my arms enough to see them) similar to the spigot that Katniss was gifted in The Hunger Games: Catching Fire to get water from a tree, except drilled into my body. THEY HURT! These drains resulted in a lot of goo just coming right out and soiling the hospital gown, sheets, pillows, that I had anywhere near my sides. Thus, the clothes that I thought I might wear in the hospital were useless.

6. Occupational Therapist visit while in the hospital. Maybe this was because of my length of hospital stay, but it was awesome. She came in each day and helped me learn exercises to do for PT but also how to get out of bed, tips for how to shower safely, how to get clothes that aren't button up on safely while having T-Rex arms. This was another great surprise.

Surgery Recap

I'm almost 1 week out from explant and DIEP reconstruction and I'm finally feeling ready to think back about the week.

It started on Sunday with a drive down to Madison. We dropped the kids and dog off at my parents and made the 140 mile drive in a snowstorm. It usually takes us about 2 and half hours, but because of the snow it took closer to 4 hours. There were several areas where we were either completely stopped or down to 5 mph on the highway. At one point it felt reassuring that there were two UW Health Ambulances following us for a portion. Mitch, who never takes a break while driving this route, suggested we stop at a gas station for a little stretch break, so you know it was rough. Eventually we made it and checked into the hotel that is right across from the hospital. We ate a good meal out at a restaurant fittingly called "BRAsseire V." We enjoyed dinner and spent the night watching The Office on the hotel TV. The first episode on was the one in which Jan gets implants. Fitting on two regards...implants obviously but second because there is a student at school who insists that I look just like Jan from the office. I don't see it. I think it's just because I'm the only female she sees that wears a blazer like Jan. Oh well. I did the Hibiclens shower and tried to sleep. Sleep didn't work very well. I had a drink with dinner, I listened to peloton sleep meditation, I prayed the rosary in my head, I did 4-7-8 breathing, all thing that usually help. But sleep really didn't happen the night before surgery. I forced myself to lay there until 4 am.

  

At that point, I got up and did my second Hibiclens shower following the directions from the pre-op appointment. I boxer braided my hair and double checked my bags to make sure that I left Mitch with all the things I thought he could take home and I had packed all the things I thought I'd need in the hospital. We took the brief drive to the hospital.

We were told to arrive at 5:30. We pulled in at 5:13. Valet parking wasn't open yet. Mitch dropped me off because it was still quite a snow storm and I wanted to leave my jacket in the car and found a spot to park. We quickly found our way to "First Day Surgery" which was also not open yet at the time that we arrived.


Surgery Day 1-Monday

The First Day Surgery department handled everything for my check in. I got dressed in Bear Paws gown, vitals taken, and pryed my wedding ring off my finger to leave with Mitch. At 7:00 all the action started. They started my IV putting it in the vein in my wrist because the front of my hand wasn't cooperating. Dr. Afifi came in and drew all over me. The Anesthetists came in and explained all their part as well. Throughout all this the nurses kept apologizing that I had to wait so long and that it was so rushed. They explained that they prioritize the order of people based on who they think is going to take the most time and I was someone they thought would be very simple, which is true...other than these BRCA related surgeries, I'm really a very healthy person. The wait also didn't bother me because it was nothing compared to what I experienced during my mastectomy.

My surgery was scheduled for 7:30, I said goodbye to Mitch and was rolled into the operating room. The last thing that I remember is the surgery team doing the check in thing where it felt like they were all standing around me and one leader was naming off the different responsibilities and each person would respond.

The next thing I know, I woke up in the recovery room. I spent some time in and out of it in there. I remember taking breath and feeling so surprised at how it felt. Now, I'm sure I was on significant pain meds, but I remember thinking it was so much easier to breathe. I took like three breaths and couldn't believe it. The nurse thought something was wrong and came over to ask me about it and I tried to explain but clearly didn't do it well. Then was rolled into the room I stayed in for my time in the hospital in the F6/6 section. Sometimes after DIEP surgery, hospitals require a stay in the ICU. UW Healthy University Hospital has this section designated for higher risk surgeries like this so I didn't have to move from ICU to normal room at any point. Mitch met us in the hallway, squeezed my hand and gave me a kiss. The first thing I said to him was "It feels so good to breathe." Apparently, I was trying to explain what breathing felt like. He didn't quite get it either. I think that I was so used to breathing with my implants which felt like rocks attached to my chest that I didn't realize how their weight felt or how restricting it felt until they were gone.

While I was in surgery, Mitch found the waiting area at the hospital. He was given a buzzer that provided him general updates every 2 hours. According to him, the waiting area was a really big open area. He left once to eat a breakfast burrito from the cafeteria. He read a book, dozed off, watched American Pickers because that was what was on TV and he didn't want to change it. He was intrigued to learn that the former ESPN anchor George Smith was now an anchor on a Madison station. At 4:45, Dr. Afifi came out to meet with Mitch. He let him know that they were able to get all of the capsule that surrounded my implant out and that everything went well.

I remember the staff coming in checking my vitals and using the doppler to listen to the flaps. At first it was every half an hour, then moved up to every hour. The room had to be 74 degrees to help the flaps adjust. They monitored the color and temperature of them as well. I dozed off a couple more times and by 8:30 Mitch decided he would go back to the hotel.

Post op day 2-Tuesday
I was in and out all night. It felt like day 2 started when Mitch came back to the hospital at 5am. They told him that the med students do rounds at about 5:30, so he wanted to be there to hear what they had to say. They had nothing new or earth shattering to share, but it was my first experience in a hospital with med students and it was a chance each day to see scenes from Grey's Anatomy or Scrubs in real life.

Feeling good

Later that morning they determined it was time for me to get up and moving around. They pulled my catheter and had me start to sit up. I had to be able to roll onto my side, put my feet down and get my body up without using my abs or arms to push against anything. That was horrible and painful and the only thing that was worse was when they said I need to stand up. Holy hell. That was awful. I had to do that three times while they monitored my blood pressure to make sure that it was steady before they would let me walk. I didn't want to walk. I cried it hurt so bad and I sat back down and quit.

I drank a ton of water because of the sore throat and dry mouth. They provided a little cup with a straw and a mini pitcher full of extra. I remember thinking how on earth am I supposed to be able to refill this water cup--I don't have the strength to pick up that pitcher, but eventually I was able to do that and it was good exercise for me. Because of all this water though, it was only 20 minutes before I really needed to go. I pushed through the awful pain. Did the blood pressure checks again and waddles to the bathroom. I figured out that if I relied upon my leg strength getting up was much better. I couldn't stand up right because of how tight by stomach skin has been pulled, so picture an old lady hunched over a walker, minus the walker, and that's what I look like walking anywhere.

The Good Pizza vs. The Original Cheeseless

I learned how to order my hospital meals. I took the meds, which was a variety of the big pain meds, tylenol, aspirin, stool softeners, miralax, potassium, shots for blood thinning... it felt like every 2 hours they had something for me. I watched some tv and dozed off. I moved from the bed to the chair several times. I managed the drains with the help of the nurses.That afternoon Dr. Afifi came by to check on me and I was allowed to shower. Mitch eventually headed back home because we agreed that it was a waste of time for him to be off work and it'd be better for the kids if they had the normalcy of him home.


Post op day 3-Wednesday

I continued with the routine of meds, drains, and flap checks, sleeping and small amounts of walking. Flap checks moved from every hour to every 2 hours then to every 4 hours overnight. The nurses began asking about passing gas or bowel movements. This was the last task that needed to occur before I could be considered ready to be released from the hospital. UW Health has these awesome posters to help you describe poop so that when it happens you can accurately let them know. I understand that I'd been given twice daily stool softeners and miralax because of concerns about the anesthesia and narcotic pain meds having an impact on everything down there. They may have overdone it though because imagine this situation, someone who doesn't move very well or very fast, experiencing the sudden urgency of these meds. It wasn't pretty. Nurses and Nursing assistants are saints. Due to how hard it was to move around, I decided to ask Mitch to order the recliner rental and he got right on that. It was a little bit lonely at the hospital that day. Between my digestive issues and being by there by myself and pain, there were some tears. That afternoon the Occupational Therapist visited and gave me plenty of exercises to do to regain range of motion in my arms and shoulders. That afternoon, they started talking about when I could go home. We had planned with Dr. Afifi to do Friday because of the distance to the hospital in case something came up. I let the resident know this plan for Friday despite how lonely and homesick I was feeling because I thought it would be better incase something happened with the flaps and because I needed to feel reasonably sure I could make it throughout the drive without needing to use the bathroom.

Feeling Awful and Homesick

Post op Day 4-Thursday
Same old, same old with the flap check and vitals. I started to slow down the pain meds and they promised they wouldn't make me take any more stool softeners or Miralax. They were able to turn the temperature down in my room. During rounds, they declared me allowable to be discharged whenever I was ready. I stuck with the idea of waiting until Friday, but by lunch time I was again feeling homesick and my stomach had settled, so I asked Mitch what he thought about this. He made some re-arrangements to cover the kids and was on his way. By 5:00, I was discharged from the hospital and on my way home. I used a pillow placed between my and the seat belt to help feel comfortable on the ride. By 7:30, we were home! It felt so good to be home and to hug the girls and sleep in my own bed! I used a wedge pillow to keep myself at about 45 degrees in bed with more pillows under my knees and by my arms. It was such a comfortable nest!

Post op Day 5 Friday AT HOME
I was able to sleep through the night with just one wake up for more pain meds. Mitch helped with the drains and dressings before heading to work. I got to spend the day with the girls because they had the day off of school. They took good care of me, making me breakfast, refilling my water, picking up whatever I dropped and couldn't pick back up. We watched a movie together, they played while I napped. Mitch came home for lunch with us and then again at dinner time. Pain wasn't horrible and I was walking a bit more upright.

Post op Days 6 and 7 Saturday & Sunday AT HOME
Each day felt a little bit better. I continued to wean off the pain meds switching to only tylenol. I am progressively standing more upright. Days are spent in the recliner with several slow walks around the house. I've had some great afternoon naps and then crawl into my nest at bedtime. My drains are putting out less each day. My penrose drains have scabbed over so they don't need dressing anymore. I even attempted putting on the abdominal binder for a few hours today. My incisions look good and I've almost got the adhesive goo off most places. Hopefully this continues with feeling better everyday!

I like lists

I like lists.

Here’s a list of things I did to get prepared for this surgery (no semblance of order here.)

-Deep cleaned the house...like ridiculously. Every room, every closet. I even moved the oven and fridge and vacuumed behind them.
-Bought a few more button front, zip up, or super soft shirts to be extra cozy.
-Moved all of my leggings, sweats, and shirts to a spot in my closet where I won't have to reach or open a drawer for them.
-Made soup...lots of soup. Every week I made a big pot of soup, we ate it for our meal and then I froze the rest in small containers that I should be able to each for lunches at home.
-Prepared a stack of books to potentially read. Some are work related; some are pleasure reading. Last time, I remember thinking I'd read a ton but not actually doing it because I'd fall asleep too easily. We will see how it goes this time.
-Asked friends for recommendations of what to watch on Netflix, Prime, Hulu, etc. So far my plan is to finish Parks and Rec (already started season 7) and the 8 episodes of This is Us from this season that we haven't watched yet. I need to do season 2 of Big Little Lies and season 3 of Handmaids Tale. After that maybe Ms. Maisel, Schitt's Creek, One Child Nation, Imagineering, or You.
- Overthought the need for a recliner and whether to purchase or rent. I still didn't buy one. Worst case scenario, I rent one from home medical supply company and they deliver it.
- Increased my protein intake and added collagen as well. You should see my nails!
- Hydrated--water, water, water!
- Prepared for a substitute taking on my role at work. I thought planning for a long term sub for my classroom during maternity leave was hard..prepping for someone to stand in as Assistant Principal was even more of a challenge!
- Moved all of the kitchen supplies that I will need to use into a basket on the counter so that I don't have to reach up or open doors.
- Worked out focusing on leg and core strength. I was NOT supposed to lose any weight before this surgery, so for the first time, pretty much ever, working out took on a new meaning. I worked solely on heart and lung health instead of trying to burn calories.
- Purchased a ton of food to stock the pantry and freezer so that I don't have to grocery shop for awhile.
- Prepped everything I could possibly take care of that I will or could miss out on while recovery. Taxes done. Swim meet info ready for Mitch to write on the kids arms. Carpool organized.
- Made a list of the simple things that I can do during medical leave that meet my movement restrictions...wash my makeup brushes, use that little wood colored marker to color in the scratches in the woodwork, catch up on podcasts. I have big goals!

I'm ready

I am ready!

My bags are packed. The house is clean. My inbox is cleaned out and my away message is set. I have a list of books to read and things to watch while on leave. I don't want to jinx myself, but I think that I made it to surgery day without getting a cold, flu, or fever at the last minute that would keep me from being able to

On Sunday, Mitch and I will drop the girls and dog off at my parents and make our way to Madison. There's a predicted snow storm, so it may be a slow drive. We have plans for dinner out Sunday night--a good meal and a glass of wine to hopefully help me sleep. Then I hit the shower to wash my body with half a bottle of Hibiclens. I get to do that shower scrub again early Monday morning before our 5:30 am arrival at the hospital. 7:30 Surgery time.

I am nervous. But I am also ready for this. I'm confident in my doctors. I'm happy that this could mean that I don't have to have maintenance that I would have and with implant reconstruction. I'm 100% sure this is the right decision. I'm curious what everything will look like in the end. It's hard for me to predict what the pain will be like and what things will be like during the recovery. I'm very much a planner, so this unknown is hard for me.

I was struggling more with this before Christmas, just feeling overwhelmed by the unknown. I started writing though again, journaling for myself. I really loaded on the workouts to keep my sanity. I have a 11 week streak on Peloton that I plan on keeping up through recovery by using the Peloton meditations.

On surgery day, Mitch will be in charge of my phone. It's a long surgery and I've been doing my best to convince him NOT to stay at the hospital the entire time, but we'll see what he chooses. He'll be handling the texts to update. I've also heard that I should let him keep it for a bit after as you never know what will happen on those pain meds and I don't want to come home to a million Amazon boxes.

We have a date!

February 10th!

We have a surgery date!!

77 days away.

It feels so good to have a date and be able to make plans. I’m stuck in this awkward place of not being happy with the way I look or feel and not really being able to do anything about it. Being able to see the end in sight makes me feel a lot more settled.

I don't like CT scans any better than MRIs

I had to do a couple more medical things to prepare for this surgery. I had my regular breast MRI along with a CT Angiogram to map out the blood vessels in the abdomen and make sure they are in good shape to handle microsurgery. I found out quickly though that I have an reaction to contrast dye. I’ve always had a negative reaction to the MRI dye where it makes me puke and just feel yucky, but for the CT Angiogram they use a different contrast dye that is stronger and push it through the IV at a faster rate. Of course, I immediately felt the warm sensation all over from the back of my throat to my toes which included the feeling like I peed (but I didn’t!). Then the dry heaving came. I was able to hold still and hold my breathe for enough time to get the scan but as soon as that breathe was let go, the puking feeling came right on. I knew that this was likely so the technicians hooked a puke bag on my finger before pushing me in. Thankfully, the scan with the dye is the last scan, so the technician came back in right away and helped me out. As my dry heaving calmed down, I noticed her looking at me funny. She asked, “Did you have a blemish on your forehead when you came in!” I explained that No, I didn’t. She said ok, let’s just take a look at your arms and while she disconnected the IV she said “Ope, there’s another one...yep that one on your head is getting bigger.” I had broken out in hives! She told me to stay lying down and that she was calling the doctor to check me out and get me some Benadryl. The room filled quickly with 6 staff members checking my vitals and asking a million questions about how I was feeling. I was just fine...it was just a little itchy. They made me take Benadryl and stay for observation for another hour. It delayed and changed our family plans that weekend just a bit as being on three times the usual amount of Benadryl makes me a little bit sleepy. Only 1% of patients have a reaction like this and of course, I'm that 1%. However, on top of that, I also developed what my doctor thinks may have been a delayed reaction to the iodinated contrast. Later that week, I developed small red bumps (my hives were very large in comparison) all over the trunk of my body and underarm area. Apparently this happens in even less patients, but I got 2 for 1. It itched like crazy while there (insert more Benadryl), but went away at 2 weeks out. 
I'm really hoping that these are my only complications when it comes to this surgery. Everything last time went so smoothly, but it's like since I've had these implants for reconstruction my body reacts differently than ever before and I cannot predict what it's going to do.

Prepping

This time around I know more of what to expect. I have a few button up or full zip shirts and comfy pants ready. I ordered a drain camisole to hold them all because I remembered loving that thing. I took a few inches off my hair so that it’s easier to deal with. I will do my nesting of making freezer meals before the surgery date comes. I have plenty of sick days accumulated so that missing work is not going to be an issue (other than trying to find someone to cover and the guilt I feel about leaving the office for this amount of time--sorry guys!) I spent most of my day time during my last recovery hanging out in a recliner, but we no longer have that, so I'm still on the hunt for a super comfy one that I can sleep away the recovery days in. I also have heard that a wedge pillow can make sleeping in bed with the drains still in more comfortable. I might invest in one instead of making the nest out of pillows that I did last time. The abdominal scar is going to be a new thing, so I'm not sure how that's going to feel...right now I'm planning on wearing a lot of leggings, but I'm not opposed to trying maternity jeans if it comes down to it. 

As I've started telling a few people at work, they've all asked "What can I do to help?" Really, there's not much. I eat what some have called during lunch "weird foods" because of my wheat allergy, so I don't need a meal train thing or anything like that. I really don't know what to say. I appreciate the offers, but really I think we've got things covered. I guess...keep your eye out on the work trading post for a recliner? Or maybe if you have a pair of those ridiculously soft but strangely patterned lularoe leggings sitting in the back of a drawer that you never wear, pass them my way for my recovery time so that I can pull way up over incisions and tuck my drains inside them? I'm going to miss the kids next home swim meet while recovering. I'm usually there running the computer on the deck, so they'll probably feel me not there...especially since one child believes I'm the only one who can put her cap on securely. Give them a little help if they look lost at the swim meet please. There's a lot of driving back and forth to Madison that has already occurred and will continue for check ups afterward...if you're heading that way for the day, let me know what day and we can see if we can carpool!

What is the next step?

If I wanted to remove my current implants and have them replaced with a safer brand, my plastic surgeon shared that she could move them to above my muscle and all that pain would go away. It would be a quick, easy surgery. She compared it to changing from one shoe to another. However, I’d still be stuck with a foreign object in my body and if breast implant illness is a thing for me, none of these symptoms will really go away.

Because of this, I have eliminated any implants (saline or silicone) as viable options for reconstruction option for here forward. Given my high c-reactive protein, my doctor believes that once I have the implants removed, I will be shocked at how good I feel, that my body has gotten so used to running this way that I don’t recognize how run down I truly am.

My options left are reconstruction with tissue transfer or go flat. Tissue transfer means that the plastic surgeon will take tissue, meaning fat, from a donor site around my body and use it to fill the breast pocket that is left when the implant is removed. The donor site is typically called a “flap.” Options include TRAM flap, which takes abdominal fat but also loses one set of abdominal muscles, Latissimus Dorsi Flap which takes back muscle. However, new technology allows doctors to perform microsurgery to actually reconnect the veins and arteries with a couple other donors sites so that you do not need to lose muscle on the process. This includes DIEP flap using abdominal fat and SGAP flap which uses gluteal fat. These options are now what’s considered the gold standard in breast reconstruction. All of these existed seven years ago when I had mastectomy. They were just not on my radar because I wanted the option with the fastest recovery as the girls were so young at the time.

This time, I will be going with a DIEP flap reconstruction. Because of the microsurgery done to reconnect the veins, this is only done in certain hospitals. UW and Froedtert are the only locations in Wisconsin that due this surgery. Two surgeons work as a team to dissect the abdomen separating the skin, muscle, and fat, then work to reattach it to the blood vessels in the chest. The surgery takes anywhere from 8-12 hours depending upon the conditions they find with the blood vessels when they open up. I can expect to have 6 drains for the first few weeks. I will have a new incision hip to hip across my abdomen, but they will be able to reuse the original incisions in my breasts.

I will be traveling to UW Health Hospital in Madison. Dr. Affifi and Dr. Michelotti will perform it. I will be in the hospital 5 days and then will likely be out of work for 4-6 weeks. I hear I might be under the care in the hospital of a friend who works there and will be on that same floor. Hopefully, he can sneak me extra jello or the good socks.

Because I have already had the mastectomy portion, my recovery maybe different--hopefully better! Doctor says plan for 6 weeks, I say that I heal better than most, so I am planning for 4, with maybe going back half days for week 5 and 6.

The major risks with this surgery are the new flap dying after it's place at its new location. This could happen because it doesn’t get enough blood supply or forms a blood clot where it has been reconnected. Infections are always a concern with any surgery and the large incision needs to be allowed to heal safely avoiding infection and the wound re-opening.

Most women who have this type of reconstruction, end up having another minor revision surgery 3-6 months down the road to repair little things that didn't quite settle correctly. My plan is to combine the revision surgery with step 2b, which originally started me thinking about my BRCA this summer. They usually have to do some revision to the abdominal scar and this will be the perfect time to remove my ovaries and do the preventative hysterectomy at the same time.

Thankfully, I have a support of so many around me throughout this! I have one friend who went with DIEP at around the same that I had my initial mastectomy, and another that reconstructed this way just a year ago. I also have a great community of women through a facebook groups who are all BRCA+ or who've had DIEP. I feel like I know what I'm getting myself into and am ready! I'm just waiting on the scheduler to coordinate the surgery date.

I'm going back in

I’m going back in. I feel like I’m coming in off the bench, coming out of retirement for one last hurrah, or some action movie star diving back into the scene to save one more person. But of course it’s not sports or action scenes for me, it’s back to the BRCA and Breast Cancer related journey that we all thought I was done with.

A couple of major things have occurred in the last few years. First, If you follow cancer in the news like I do, you’ve probably heard that there was a recall of silicone breast implants. The recall happens to be the make but not model of my implants. In the US, the FDA has recalled only several specific models of Allergan implants. These implants are causing Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL), which is a unique form of lymphoma that only occurs In those that have breast implants. As of July 2019 there had been 573 women diagnosed with it, including 33 deaths. All of these women had breast implants, but 481 of them had Allergan implants. The FDA requested in July that Allergan recall certain implants, which they voluntarily did. However the FDA recommendation is actually not to remove the implants until you are exhibiting symptoms of lymphoma. Yes, you read that right. No need to remove until you show signs of lymphoma. Seriously the FDA is telling women who have already been through treatment for breast cancer (because silicone implants are only available for those who have been through treatment) to just wait and see if they develop lymphoma!

The French government and 33 other European countries however have recalled additional Allergan implants and banned the sales of ALL implants produced by this company and refused to give them approval for future sales until they prove they are safe and comply with their set standards of proof. This was almost six months before the FDA made their stance known. 

So, are mine recalled? No, they are not in the US recall list, but they are on the European banned list. If you hear me talking to some about what's coming up for me, you'll likely hear me say that my implants have been recalled. It's just easier than explaining everything surrounding the recall and everything else that went into making the decision. 

What else do you mean? I’ve also experienced a couple health things over the last few years that have made me wonder if breast implant illness could be a factor. I referenced some thyroid issues, sudden onset of allergies, random skin rashes, adrenal issues, and alopecia on my yearly posts. I've worked hard with doctors over the years to balance out my hormones so that I can sleep normally as I've had times when I was so tired I could fall deep asleep at 4pm and other bouts of insomnia where I felt as though my brain and body were moving 1000 mph all night long. When I first started seeing a naturopathic nurse practitioner about this, she said right away, "Have you thought about it being related to your implants?" After everything I'd been through with recent surgeries, it was not going to be my implants in my mind. She was able to help me stabilize everything and get off of thyroid medicine, but a mystery liver enzyme consistently came back as high throughout maintenance. Doctors move and insurance changes, so three years later I had to find another doctor and was able to find a great Integrative Medicine specialist. I originally went to her because I was considering step 2b (removal of my ovaries) and after everything I experience after my year of surgeries, I wanted advice on what to do so that I don’t experience all the mess again. When reviewing my medical history her first question was, “Could it be your implants?” New Ob/Gyn visit this year and she also questioned the implants as the cause of what I have been through. The liver enzyme is still high and this doctor likes to check C reactive protein as well. During the appointment to review my lab results, she actually said, “Holy shit that’s high!” Apparently, it’s the highest she has ever seen on a patient. It’s a marker for inflammation within the body. That was finally enough to make me actually google Breast Implant Illness and check, check, check, check so many of the symptoms listed match what I’ve been dealing with!

However breast implant illness is a controversial topic as it is not recognized by all in the medical community because there is currently insufficient data linking the onset of symptoms with breast implants. The thought is that our bodies are rejecting the foreign objects in our bodies and come up with these autoimmune responses as their attempt to get rid of them.

Added to all of this is the general issues that come from breast implants. They are COLD! They are under my muscle, which means whenever I do something that utilizes my chest muscles, I have significant pain as the muscle tries to repair itself. This occurs whether during exercise (in which I already avoid push-up or anything directly chest related) or just life relate like shoveling snow or digging up plants for gardening. They have an expiration date anyway, so at some point they’d have to be replaced. They require annual MRIs to ensure that they are still in one piece and I have lovely reactions to MRIs.

So, I’m just ready to be done with them. I'm officially working with UW Health to figure out when my implants can be explanted and I can try something new with reconstruction!

The short version--6 years later

It's time again for my annual post. This time, I thought I'd do the short story version which I will get to soon.

I moved to a new position at a different school in the district this summer. I'm with a new staff after having spent 13 years, essentially growing up as an educator, at my previous school. Everyone at my old school new my story, but not so much at this new school.

We typically celebrate the day of my surgery as an anniversary, going out to dinner or make some special treats. This is a particular tradition at my previous school...birthday, pregnancy announcements, Fridays were all celebrated with treats in the lounge. Cancer-versary is a definite lounge treat occasion. This left me thinking this year, what do I do? Do I put myself out there with this staff? We just got done doing a book study of Brene Brown's Daring Greatly, so I said yes to vulnerability and chose to share. Hopefully others will start to as well and we can get the lounge treat tradition going here too. I put some chocolate covered strawberries in the lounge with a note about what we're celebrating. Lots of questions came up, which leads us to the short history that I'm about to write.

Here it goes:

My family has a long history of breast cancer at young ages and includes men with breast cancer. Our history is so unique and with such a large family that we were approached by Creighton University to be in a study in which we'd get genetic testing done and they'd track us. I had the genetic testing done and found out that I carry a genetic mutation that increases my risk of breast, ovarian, and other cancers. I had a hard time initially with this trying to figure out what it meant for me and how I would proceed. But eventually I was able to come to a good place with it; writing and talking to others about it was a big part of that.

I made the decision to have risk reducing surgery after we were finished having kids. We had our two daughters but were having a hard time deciding if we were going to have another child. I got pregnant with a third child, but miscarried and I felt like this was a sign. After a lot of prayer and thought about it, I felt that God was telling me something. I decided needed to do something about my breast cancer risks now rather than later.

I went ahead with plans moving forward with a preventative mastectomy. There are a lot of choices that you get to make when you come at it from a preventative side. I needed to have one last MRI in December before my February surgery was planned to help decide if I was going to have something called the sentinel node biopsy done as this is the one and only time it can ever be done.

The MRI came back however with suspicious lumps. An ultrasound and biopsy of this was unsuccessful. So we didn't know exactly what they were, but my doctor assured me that the surgery that we already had planned was the best course of action. We were planning on removing everything anyway and that would be a part of the treatment plan regardless of what these lumps turned out to be, so we were really in a good place.

I had a bilateral mastectomy with the removal of 1 lymph node on both sides. During the surgery the lumps that were spotted in the MRI were examined and then these along with the rest of the tissue was sent off for a more detailed examination to be studied and determined exactly what was going on in there. I was able to have reconstruction immediately because the initial during surgery pathology came back clean showing that the lumps were called Fibroadenomas. The more detailed pathology report indicated that I had hyperplasia in both breasts along with 4 spots of abnormalities in ducts.  Hyperplasia is the overgrowth of atypical cells and is what turns into cancer eventually. These abnormalities found are called DCIS and are treated as stage 0. My treatment was the same as what would have happened 6 months down the road when this tissue had become full blown DCIS like my dad's "precancerous lesions" as he and his doctor called it back then or something worse depending upon how fast the cells were growing.

I remember an ob/gyn that I had one appointment with during my second pregnancy asked me quite a bit about my genetic mutation during one of those check ups you have every two weeks at the end of pregnancy and he said, "Do you feel like you have ticking time bombs?" I was offended at the time and was like no...I'm not going to explode! But in reality, I did have a time bomb. I had cancerous tissue starting to form inside me and removed the bomb before it did any damage. I am now thinking of my doctor like she's MacGyver!

I shared with my amazing MacGyver-like doctor at one of our last visits (before I had to switch to another doctor due to our insurance changes) that I was struggling with how to describe what I am...am I a survivor? am I a previvor? what describes my journey? She told me, "Renee, you are absolutely a survivor. You beat cancer before you even knew you had it."  So that is the best way to end my history. Yes, I am an cancer survivor.  I am so thankful that I made the choice to do this surgery when I did. I am thankful that I still had the choice--not something that I HAD to do after diagnosis. I beat cancer before I knew I had it.

That was not so much a short history because I like words and whenever I start to write it never ends up short. Hopefully this helps others understand without having to go back and read the entire blog history.