Ever since my last post I have been meaning to get on and write an update. The problem was that I kept waiting until I had more information. I kept saying “I’ll update after my final chemo” which led to “No, I’ll wait until my re-staging scans” and then “Well I’ll just wait to update until after my nipple delay”… I kept putting it off until there was so much to update you on that it seemed like I would never be able to catch up. I apologize for the hiatus but the past few months have been so crazy, it was important I spend time with family and focus on my health. Thanks for your patience and for reading this. It feels so good to be writing again!
[Many people who read this have contacted me asking to update them on my recovery from my recent surgery. I’m going to write my updates in chronological order so the beginning of this post will go over my final chemo and I’ll end with info about my recovery as well as information I received yesterday at my oncology appointment.]
As you know, I had very mixed feelings leading up to my final chemo on January 20th. I had gotten so used to being in that infusion chair at Texas Oncology and going to appointments regularly that I wasn’t sure what life would look like without the cancer. When the day finally came I was not nearly emotional as I thought I would be. Instead of crying I was smiling. I was excited and I felt an immense amount of pride. I knew the fight was not over but chemo is such a HUGE part of fighting cancer, both physically and emotionally, that getting through it was extremely rewarding. Family and friends came and surprised me which meant the world. At the end, the nurses presented me with a certificate of completion and then clapped and threw confetti everywhere. That moment has stuck with me, not just because it was special, but because I still am finding confetti ev.er.y.where (seriously, last month I found a piece in my dryer in Waco). As far as the certificate of completion goes, I’m still stuck on what to do with it. Do I hang it up somewhere? It’s sort of like a marriage certificate…I’m really proud of it but it just doesn’t really belong in my work office or in my living room. I’ve been wanting to make a shadow box with stuff from our wedding so maybe I’ll make a cancer shadow box and it can contain that certificate, a lock of wig hair, one of those plastic puke bags, and a hospital bill. That about sums it up, anyway.
^Me saying “Bye Felicia!” to IV Chemo and my certificate & confetti^
^The first and (hopefully) last bathroom selfie I’ll ever take at Texas Oncology^
That final chemo kicked my butt and I spent much of the remaining week in bed sleeping. I’ll end this first update with a ridiculously cute photo of my dog cuddling me (though I have to point out, I am in PJ’s and do not usually condone white on white outfits but I was basically intoxicated so it’s not my fault).
After finishing chemo and recovering for a couple of weeks I was set up to get my re-staging scans. I had an MRI and a bone density scan. The nuclear medicine bone density test is much like a regular scan but instead of the machine having the radiation, you are the radiation. Yeah, it’s this bright greenish fluid that they bring to you in a metal syringe and inject into your vein. The radioactive material sticks to your bones and then glows when they scan you. I know what you’re thinking and I’m sorry to report that no, this didn’t give me super powers either. I KNOW. They put titanium in me, inject me with poison for 7 months, stick radioactive material in my bones (in a department called nuclear medicine. Like, really, if you’re not making super heroes back here what are you even doing?) and I still can’t fly or anything. The only good thing to come out of being radioactive- and it’s a BIG good thing- is that it told me that I had no detectable cancer! Both the MRI and bone scan were negative which meant the last regimen of chemotherapy really did the trick.
I found out when I got a call at work. I was actually in a training that day which had me feeling really uncomfortable because if you’ve read from the beginning, I got the news that I had cancer via a phone call while I was at a training. This happened to be the first training I had been to since I got the news. It felt so familiar to leave the room to take a call from a doctor, only this time instead of “Unfortunately you have breast cancer” it was “There was no evidence of disease found in your body”. Writing that makes me tear up all over again. Needless to say I melted into a puddle and began thinking of ways to tell Nick. Unfortunately, I live about an hour and a half away from family so I had to tell them over the phone but I didn’t want to text Nick news this big. I decided to go to our favorite cupcake place and take some cupcakes home over our lunch break to surprise him. I was so nervous when I walked into the house that I was shaking. I put the boxes (yeah, I said boxes, we really like cupcakes) on the counter and stood behind him. “I figured whether we got good or bad news today we would need cupcakes. Wanna see what kind I got?” I asked him. He opened the boxes and immediately turned around and grabbed me. We cried in the middle of our kitchen and said “I love you so much” to each other about a million times. For us this meant more than no cancer. This meant we could begin marriage, for the first time, without cancer. We had had so many hard conversations and there were times I think both of us were convinced we wouldn’t see a day where I would be declared cancer free. This opened up a world of hope and it opened up the opportunity to think about the future, something I had begun forcing myself to shut out because it was too hurtful to think there was a possibility that I would never see our plans come to fruition.
So what do you do after you get this kind of news? First you eat one of those cupcakes you bought because they aren’t gonna eat themselves! Next you begin doing things that you can do when you aren’t feeling crappy from chemo and don’t have appointments all of the time. Here is a short list of some big things I did with people I love after getting the news.
I LOVE animals. That capitalization was not an accident and if you’re thinking “capital letters mean someone is yelling”, you would be correct. I equally love cuddling so when those two things come together it’s like a love explosion. Nick drove me to a drive-thru zoo and I was able to get so many cuds & snugs in with the babies. Above we’re pictured with a Highland cow which to me is like the perfect mixture of an orange baby cow and Fozzie Bear. We also loved on a zebra, a donkey, a baby otter, a bearcat (I honestly didn’t think these were a thing), etc.
I spent a night out in Waco with the best squad a girl could ask for. Who else takes 10 minutes to decorate napkins so that we can have a “Maeg is cancer free” photo booth session? No one. That’s why they’re my people.
My parents bought us a weekend away for Christmas so we sped off to Gruene where we stayed at the cutest little B&B on the river. The next day we went to Natural Bridge Caverns and went on a tour of one of the caverns. I recommend this stop but do not recommend the tour for someone who just finished chemo. As we made our descent, I felt like I was dying at 3 separate points of the tour. This should have prepared me for the agony that was walking back up the millions of stairs to fresh air (no I’m not exaggerating, I’m sure it was a million). I’m positive we blended right into our small tour group as I was gasping for breathe and sweet Nick was fanning my face as the tour guide was talking. Totally chill, not weird at all. After the tour we completed a walking maze (in 5 minutes when the girl said the fasted she had seen was 12 minutes) like some bosses and headed back to the car to make our way to San Antonio. We ate amazing food every day, went on a ghost tour, had massages at the spa, giggled and threw stuff at each other in the steam room because we’re children, and relaxed. We knew this would be the last getaway for awhile as my surgeries were coming up and I would be recovering.
When we returned back to the real world we prepared for my first small surgery, the nipple delay. I’ve had a lot of questions about this. Let me say that this surgery is only an option for people who are wanting, and are able, to have nipple sparing mastectomies. Basically this surgery consists of the surgical oncologist making small incisions around half of your nipple so that the tissue can begin forming new circulatory connections before the big surgery. I call them Pokeball boobs because that’s what the incisions remind me of. It’s an out patient surgery and recovery is really easy. This is usually done at least two weeks before the mastectomy. Here is what the incisions look like (obviously a very professional depiction from a science book) and me preparing for surgery.
After healing from the sparing surgery, Nick and I had a couple of weeks to really grind it out at work and make sure everything was taken care of before we would be gone for 6 weeks. We moved a ton of stuff to Austin and decided the day before surgery to do something active I probably wouldn’t be up for in the foreseeable future. That led us to kayaking on an absolutely beautiful day downtown. I think doing something fun the day before was a great idea. I have thought about it several times after surgery and it’s encouraged me to push myself so that I can get back to doing that stuff ASAP.
[To be clear-the surgery I had was a bilateral mastectomy with an immediate DIEP reconstruction. I’ll talk details later but basically they take tissue from my stomach and use it to replace my breasts. My doctor and I decided to reduce my breast size by 30% which I’m excited about!]
The day started out pretty brutal. A 4:00am wake up so that I could wash myself with a special disinfectant soap in the shower and pack a small bag for my stay. My mom, Don, Nick, and my uncle met my friends and more family members around 5:00am at the hospital to check in. I was taken back and given an IV and a bunch of paperwork to sign. The entire time I was a little nervous but mostly excited and ready. The next couple of hours flew by as people tried to distract me and I laid in the bed waiting to be taken back. When the nurses finally came to get me and began wheeling me back I gave hugs and told everyone I loved them and then began to cry. I don’t like crying in front of people so this was really frustrating but all at once it hit me that I was about to undergo a very serious surgery and that I would never look or feel the same again. I thought about how hard recovery would be and wondered if I had signed up for the right thing. When we arrived into the surgery suite my plastic surgeon saw me wiping away tears and pulled out her phone to show me her dogs. I don’t know how she knew that would work but I immediately began talking to all of the nurses about my dog before I zonked out.
The next thing I remember I was waking up in recovery by myself and a nurse repeating my name over and over. It turns out I had been under for about 8 hours. I was wheeled into the IMCU where I would stay for 4 days.
When I arrived I had on a breathing mask which I had to wear for 2 days until I was able to switch to an oxygen cannula (one of the clear tube things that wraps around your head and goes up your nose). I had in a catheter in as well as four drains coming out of my body (one below each breast and one on either side of my abdomen). I was sore but not miserable and I was bent forward in the bed with pillows stacked under my legs so that my knees were in the air. During the DIEP reconstruction surgery they removed my breast tissue and replaced it with a flap of skin and tissue from my stomach. When they closed up my stomach they had to stretch it tight which means I was forced into a bent over position (also means they had to make me a new belly button).
Because I was bent over, I could not walk by myself and had to slowly learn how to walk with a walker. 1 day post surgery I took my first 3 steps as I moved from the bed to a recliner. It was extremely painful and took more effort than I imagined. In that moment it was one of the hardest things, both mentally and physically, that I had ever done. 2 days post surgery I was able to walk 100 feet outside of my room using the walker, 3 days post surgery I practiced walking up and down steps.
That final day in the hospital I had my first shower which required a shower chair and someone to help me. The entire shower process took about 30 minutes start to finish because I couldn’t do anything on my own and my wounds needed redressing when I was done. Minor inconveniences made the hospital stay somewhat annoying (the oxygen mask, cannula, showering, etc) but I was just glad that the surgery went as planned and that there were no complications. The only bump we ran into was on day two when my blood counts dropped. Because I had lost so much blood in surgery I had two blood transfusions. After the transfusion there was a night and day difference in my energy level and ability to focus.
Once I was feeling stable enough to be released I came home and mostly stayed in my room in a recliner my family had set up next to my bed where Nick would sleep. Nick and I had to get up every 4 hours throughout the night so that I could take my medications. Every day I walked a little more, so much so that I went through the tennis balls on my walker in a few days. You should have seen me with my short hair, in a moomoo, on my walker like a bat out of hell around the house (only two of these things are true). A little over a week later I didn’t need the walker at all and was showering on my own. My incisions began healing quickly and look great. This is not always the case with DIEP surgeries so I am fortunate my recovery has been smooth for the most part. I do still need help walking sometimes, picking things up, reaching for things, and standing up because the soreness and alterations to my body have limited my abilities for now. I still cannot drive and I still have some drains in my body that will hopefully be taken out within the next week or so. I have weekly follow up appointments and am still on medication.
Unfortunately this past weekend I began having extreme pain under one of my arms on my side. The pain didn’t allow me to sleep and it intensified if I took a deep breathe or did as much as take a step. I have had two appointments at my plastic surgeons office and they’re thinking it’s either an infection, a stitch acting weird, or nerve pain. They have put me on antibiotics to cover an infection, a muscle relaxer for the stitch, and nerve medicine in case it’s that. I was told that if the pain does not subside in a month that they may have to go back in to look around which is definitely not something I want. I’ll keep you updated on this as I plan to be blogging more often again.
Yesterday Nick and I attended my first oncology appointment since the surgery. I was told that my blood work looks good and that I should be ready to begin my next round of chemo in April. It’s confusing because many people thought January was my final chemo but I will actually be on 6 more months of an oral chemo. This is more of an insurance policy for my particular situation. My doctor told us today that because my cancer was resistant to chemo and has been particularly aggressive, we need to move ahead with this last chemo. She also informed us that if my cancer returns it will be incurable so it’s best to throw what we can at it now so that it does not come back. Incurable. Ugh. Hopefully that will be the case and we won’t have to worry about it ever again.
Before my final IV chemo I was nervous about what life would look like after cancer.
It turns out that you never really have life without cancer after cancer, it’s always in the back of your mind and somehow manages to butt in to the most random things as you’re going about your day. Whether it’s looking in the mirror and seeing the scars or getting a random pain that’s probably the result of the chemo or one of the surgeries. This isn’t necessarily a bad thing as I am healing and getting stronger it’s becoming something that has made me proud of who I am and what I have accomplished. I have been braver in the last year than I ever thought possible. I have been to the lowest points mentally, have felt the worst pain of my life, have been completely dependent on others at certain points. It has humbled me and made me so grateful for this life.
I don’t know how I can get across how thankful I am to each of my friends, my family members, strangers turned friends online, etc. Your encouraging words and presence have meant so much to me and have helped me heal. Every flower, text, meme, cupcake has meant the world.
I look forward to begin writing more. Several people have asked about my hair so I can give you an update on that whole situation up there that is doing whatever it wants. I’ll also be able to update you on my current pain situation and what that looks like. Over the next few months I’ll let you know how oral chemo is going and when we’re thinking I’ll have my phase 2 surgery which will tweak some things from my DIEP reconstruction. This post is already super long so it will all have to wait for another time.