A double mastectomy with reconstruction entails removing all of the breast tissue and implanting what they call “spacers”. These spacers are placed to create a space for the implants while allowing your tissue to heal from surgery. They leave these spacers in for at least 3 months before they perform a second surgery where they remove the spacers and replace them with the permanent implants (which are usually similar to a normal silicon implant they use for cosmetic surgeries). The spacers are filled with air during the double mastectomy with reconstruction surgery. About a few days to a week after the surgery, as they check your healing and risk for infection, they deflate the spacer implant and fill it with saline. Now, picture this- laying flat on my back on an exam table, they take a 4-prong needle and insert it directly into the nipple (there is a port in the spacer that they insert it into which just happens to be over the nipple). I did not feel a thing because I had (and still have) no sensation. With that needle they suck out all of the air. Now picture this- my boob completely DEFLATED. Yes, my boob went from being there, to not. Actually hilarious. My mom was in the room and said “holy shit! Can I take a picture?” So yes, there is a picture of that. Evidence of the craziness I experienced. They then used the same needle to inject the saline to slowly fill up the spacer. They fill it about 1/3 to 1/2 way full to allow the skin to stretch, but also to allow continued healing of the tissue. Over the next few weeks they would slowly inject more saline until we got to the “desired” size. Again, comical considering I never in a million years would go in to get a boob job, but here we are.

After a double mastectomy with reconstruction you get a quick rundown in the hospital on post-op instructions before they send you home. My husband was there to obtain the information (thank god because I was still loopy from the drugs). After surgery, I had 4 drains. 2 coming out each of my sides about 6 inches below my armpits. These drains are there to help with fluid build up and prevent infection. Multiple times a day you are instructed to “strip” the drains and empty them into measuring cups and keep a record of the fluid in each drain. Over a week or two they eventually pull the drains out after the fluid collection becomes insignificant. My husband was taught how to strip the drains in the hospital and then he showed my mom when we got home since she was going to be staying with me most of the time. When they strip the drains it feels like a gentle pulling or pressure inside the surgical site- very odd. We stripped the drains multiple times a day and when the output became less and less they pulled 2 of the drains about a week after surgery. They don’t pull all 4 at the same time in case there is more fluid build up. So the other 2 drains came out a few days later. When they pull the drains out it is a mix between relief and pain. A deep pressure pulling from the inside of your breasts to your armpits and then boom, instant relief when they are out. Wonderful. Also comes with a little bit of freedom not having drains to take care of.

After getting the news that I got to skip my second round of chemotherapy and go straight into surgery, I had to go into the chemo suite one last time to get another Lupron shot (to keep my ovaries quiet as I completed chemotherapy and go into surgery- just in case I had to do more chemotherapy later on). As I sat in the chemo suite waiting for a nurse to be ready to give me a shot in the butt, the emotions came over me. Over 4 months of no emotions- no tears, not mad, not sad, not really even happy. I sat there- taking in the smell, beeping, lights, and feeling of the chemotherapy suite and how I might never have to enter this room again. I pulled it together long enough to get my shot and get to the car. As my husband and I stood at the car door, I lost it. I lost it for the first time. Tears kept coming and I couldn’t stop. It was like 4 months of the toughest part of my life so far came flooding in. Happy tears, exhausted tears and probably a little bit of fear still in there for what needed to come next…

About 4 days after surgery, I was eating dinner with my mom and I got a phone call. THE PHONE CALL. It was my oncology surgeon (Dr. Moline) with the pathology report from surgery. This was it- the biggest news I was ever going to get. Was there any cancer left? Did they get clean margins? More chemo? Radiation?

NO.

My pathology report came back CLEAR. Margins were CLEAR. They got it ALL. No more treatment. Now… I thought I would have the same reaction I did in the parking lot that day after the emotions of the chemo suite… but I didn’t. I was back to no emotions, even after I told my mom the news and she lost it. Not happy, not sad, not relieved. I was still in this. I was still unable to move my arms, sedentary, and miserable. I still had more to overcome and I was back in the “just get through this” mindset.

So, there was only one thing left to do. Just get through it.

In all honesty, this was the hardest part. I had made it through the scary diagnosis, egg retrieval, 3 months of chemotherapy, and surgery. Recovery from surgery was hands down the most challenging for me, not only physically, but mentally.

Getting home from the hospital was nice- got settled in, had some dinner and went to bed. However, I had to sleep on my back, somewhat propped up with pillows, sleeping with my chest pillow in front of me, kind of felt like a dead person in a casket. Not super comfortable, especially since I am a side sleeper through and through. I got used to it over time, but the first few days were hard. The drains coming out of my sides were pokey and sore. Trying not to move too much and accidentally yank on them. Making sure I was still getting enough oxygen and checking my oxygen levels when I went to lay down. Luckily I had everything I needed to check my vitals at home, being a home health therapist. But trying to be a good patient myself was hard. As some of you may know I am not a very good sedentary person and the surgeon did not want me to get my heart rate up due to increased blood flow and possible fluid collection at the surgical site (which could lead to infection). So my precautions were:

1. No use of the arms (T-Rex arms is what they called it), so I had to keep my elbows in, no overhead reaching, no pushing/pulling, no reaching too far behind (hard to wipe your ass or pull up your pants)

2. No strenuous activity (keep my heart rate low) which was hard considering my heart rate would increase with any activity due to the inflammation in my lungs

3. Sleep at 30 degree angle (at least for the first week)

4. Keep incisions clean and dry

5. Keep drains intact and monitor drain output

6. Take medication 3x a day for at least 2 weeks

So this is why this was the hardest part for me. At least when I was going through chemotherapy I could still work, workout and MOVE. I had at least 6 weeks of this, which didn’t seem very long until you are living in it, having my husband and my mom pull up my pants every time I used the bathroom, timing when to strip the drains and check the output, making sure I’m taking all the correct meds at the correct times, and trying not to to absolutely crazy at the same time.

I read a lot of books, tried to get outside when I could, and tried to stay away from the T.V. My parents stayed out at our place a lot to help when they could. We played a lot of scrabble and tried to change the scenery. When I was able to start walking a little bit more, we would go for short walks in the parks nearby. After about 4-5 weeks my surgeon cleared me to start moving and stretching my arms… a little bit of freedom. However, after not being able to move your arms for 5 weeks, it was a little tough and then I realized how long this recovery was really going to be.

“Hi Amanda, how are you feeling?” As I slowly open my eyes and come back to this world after being under anesthesia for nearly 8 hours. I could barely keep my eyes open and was trying to reorient myself- where am I? What just happened? How am I feeling? Not sure. I didn’t have any pain when I woke up, mild soreness from being sedentary for so long and placed in weird positions during surgery, but no pain. I was slowly sat up in bed to adjust to being upright, given some water and jello (I was pumped they had sugar free). I hadn’t had jello in years and I remember it being SO DAMN GOOD. I was eventually taken to a recover room where they removed some lines and my oxygen…

My husband, Austin, was able to join me at this point and I was still having a hard time keeping my eyes open. I was sitting upright in a recliner chair and I would nod off and tilt my head back against the chair. My oxygen levels started to tank when I fell asleep. At one point they dropped down to 76%. Austin kept telling me to wake up and “breathe!” I would try and open my eyes and take big deep breaths. Eventually, we had a nurse come in and place me back on oxygen. I could then relax a bit more and not have to wake up as frequently to breathe. They ordered a chest xray to see what was going on.

One of my good friends from high school, Chad, worked as an X-ray tech at the hospital at the time and he was the one who came down to do the X-ray. I remember having my eyes closed and when he came in to do the X-ray I was so happy to see him! I can’t imagine what he was thinking when he saw me, I looked dead- no hair, no eyebrows, no eyelashes, oxygen, lines, pale. I felt pretty good though and was just so happy to see another familiar face.

Chest X-ray came back with “inflammation” in the lungs. They attributed it to the effects from chemo and being under anesthesia for so long. So they decided to keep me overnight and send me home the next day. I was supposed to go home SAME DAY of surgery. Looking back, that seems insane to me. They got me a room on the floor and sent me up. Visiting hours ended at 8, so my husband had to leave and come back in the morning. I got settled in, met my nursing team, and went to sleep…

The wait was over, it was time. Day of surgery came and we had to be at the hospital around 5 a.m. – no coffee, no water, no nothing. Check-in, wait. Pee in a cup, wait. Change out of your clothes, wait. Get and IV started, wait…

Then all of a sudden there were about 10 people in the room preparing you all at the same time. Surgeon #1 (Dr. Moline) oncology surgeon went over the procedure, had me sign consent forms, and boom done. Next up- surgeon #2 (Dr. Oliver Allen) plastic surgeon doing the second half of the surgery (reconstruction) went over the procedure, sign consent forms and marked me up with sharpie. Done. Aright next up- radiologist who came in to inject a radioactive dye into my right breast to illuminate lymph nodes for my sentinel lymph node biopsy (first lymph node or group of nodes that cancer cells are most likely to spread to from a primary tumor). They remove these lymph nodes and test them along with the breast tissue to make sure there is no remaining cancer cells left. The radiologist injects the radioactive material straight into the breast. I mean, they inject a little numbing stuff in first but then straight into the nipple they go with a needle for the rest. Not super comfortable. Nurses pop in and out in between other staff members, “take this pill, put this on, take this off.” Alright, now time for anesthesiologist. “I’m going to give you some light sedation and then some local anesthetic to help with nerve pain when you wake up.” Ok great, I’m sitting at the edge of the hospital bed getting injected with “light sedation” and well that’s all I remember until… I wake up.

What is a double mastectomy and what does it all entail? Well, my oncology surgeon describes it as “ scooping you out like a pumpkin and leaving nothing behind.” That way there is no risk of cancer cells coming back in the breast tissue because… well there is going to be no breast tissue left. What does that mean for breast feeding? Sensation? Do I get to keep my nipples? What is the recovery like? Scars?Reconstruction?

1. No breast feeding- there is no breast tissue left to produce milk

2. Sensation will be completely gone and may or may not come back over time . They cut all of the nerves surrounding your breasts

3. Some people may have their nipples removed due to chance of cancer cells regenerating in the nipple tissue, however my tumor was so far from my nipple they let me keep my nipples!! (Small wins)

4. Recovery- depending on what surgery you decide on (reconstruction vs no reconstruction or implants vs no implants) the recovery for my surgery specifically was about 8 weeks. (More to come on the recovery)

5. The incisions for my surgery are directly under my breast so you cannot see them unless you lift up my boobs- pretty cool.

6. Reconstruction options- I was given 3 options for reconstruction.

A. No reconstruction- just be completely flat

B. Get silicone implants

C. Use my own body fat to replace the breast tissue

Option C was not a great option for me considering we do not have children yet. If they took whatever abdominal fat I had and pulled my abdomen tight there would be no room for a fetus to grow. So option C was out. Now, at 29 years old- do I want to be flat chested for the rest of my life? Do I really want fake boobs? What an odd decision to have to make at such a young age.

What I decided to do was go with option B. Choose implants that are relatively the same size as what I had naturally and move on. There were too many hard decisions to make to dwell on this one. The plastic surgeon said I can always have them taken out and do the fat replacement surgery later on after we have children.

Alright, now that I made my decision…it’s time.

Now that I was done with chemotherapy it was time to start preparing for surgery. The plan was to not wait too long in case the cancer decided to come back, but to still give my body a short break to recover from chemo. Surgery was scheduled for April 4th, 2023. That gave me a month from the last day of chemo which was March 3rd. So I used the sauna almost every day, continued to exercise and eat healthy as well as start to gather necessary items for surgery. Luckily my sister in law came in clutch with all the accessories needed to have a successful surgery. I didn’t even know the things I would need! Well, if you are ever preparing for a double mastectomy these are the following items I would purchase:

1. Chest pillow

2. Clothing with pockets on the inside (for your drains)

3. A belt with pockets (for your drains) in the shower

4. Seat belt cover

5. Lots and lots of books

She even got me a chapstick holder that attached to my chest pillow. My coworkers also got me a chest pillow which was perfect, so I had one for the car and one for home. I passed these along to other people who had to have the same surgery so they are definitely getting used!

Other things I did to prepare for surgery:

1. Take a leave of absence from both of my jobs (lots of paperwork)

2. Clean the entire house

3. Prepare freezer meals

4. Go grocery shopping and stock up

5. Do all of my favorite activities one last time- this included snow boarding the day before surgery. Honestly, one of my favorite memories- my friend Brock decided to skip work that day and join me in the last hurrah!

Alright, now I’m ready for surgery… or was I?

After my last chemotherapy session, I finally decided to shave my head. I waited WAY TOO LONG to do it, letting my hair get so thin. However, it was beanie season and I could easily cover my head with the little strands of hair I had left so I thought I looked somewhat normal still. But it was time…

It was fight night at a friend’s house and we got the crew together for the hair cutting party of the century. All of the dudes went first- shaving each other’s heads, laughing about moles, dandruff, weird shaped heads, and scars. Facial hair was shaped into odd things and then eventually shaved off. It was a happy day filled with good people, smiles and a lot of hair, everywhere.

Then it was my turn. My husband did the honors. It didn’t take long due to my hair being so thin, but man did it feel GOOD. It was refreshing and freeing. No more hiding my thin hair under a hat. Although I did have to wear a hat because my head was so dang cold! Couldn’t believe how cold I was after shaving what little hair I had left. I ended up having to shave my head one last time because my head was like Velcro and was snagging on all of my beanies. Weird things I never even thought of. So one random Thursday in the middle of the day I took some soap and a razor and shaved my own head over the sink- felt like Britany Spears. But man did I feel good about it. We went to dinner that evening for another birthday celebration and I was deciding on wearing a wig or not… I decided not! I walked into that restaurant feeling more free and comfortable than I could have ever imagined being BALD.

“This has only happened one other time” says my oncologist when I got in to see her for my follow up appointment. No other patients with my circumstances have ever got to skip their second round of chemotherapy besides 1 other person, out of thousands of patients! So could it be the chemo itself? The extreme discipline with my diet and exercise-cutting out absolutely all sugar and being intentional about moving my body everyday? I guess we will never know what actually helped get rid of the cancer, but I will tell you one thing- I must have done something right! Not only did I make it through chemotherapy with very little side effects, but I drowned out the cancer. CANCER FEEDS OFF OF SUGAR. If you don’t feed the cancer sugar you are depriving it of its primary fuel. Drowning it out. Exercise- keeps the chemotherapy moving through and out of your body. Doing its job and getting it the hell out of there. The 2 weeks following my last chemotherapy session, I spent almost every day in the sauna or doing hot yoga. Sweating out the rest of the chemo. The sauna also has some serious health benefits and can allow your body to heal faster and more efficiently. But detoxing was my priority.

All said and done- it’s hard to pinpoint what worked and what didn’t, but all I know is what I did WORKED and I kicked cancers ass in less than 4 months.