Tag Archives: brca

My new breast friends

Miss Zumstein’s bakery spoils me!
Wow. Where does the time go?? I haven’t really had any downtime to write since my last surgery, apologies! I had my final surgery on January 31st. It was a race against my insurance lapsing and we pulled it off at the last possible second! Whew!!! Once again my surgeries went smoothly and I healed quickly. Getting the silicone implants in & my Fallopian tubes out was an absolute walk in the park compared to the double mastectomy. I didn’t take so much as a tylonel and I was (cautiously) on a boat and admiring the Portland Light Festival at OMSI just 3 days after surgery. I think my body was just really used to healing at that point and went to work quickly. Having the best plastic surgeon ever (Dr. Zegzula) didn’t hurt matters either.

Pink fizzy wine, this amazing cake and fun office decor still can’t really express my gratitude for my doctor!!
The feeling of getting those engorged expanders out and having actual breast shaped implants put in was amazing. Chest expanders push you to the limits of comfort, both physically and emotionally. Being the open book that I am I was down to share my appearance with people throughout the process. When I would have my friends look at and feel my chest expanders they always had a look of uncomfortable shock at the sight of them. I’m so glad to say that those days were temporary and that they are over now! To be honest I did expect to feel somewhat altered and never quite myself again after this. It’s a huge procedure. That’s not my experience at all. I feel so comfortable and so much like myself… but dare I say… perkier!? My pre-op breast size was 27D. During my recent fitting at Nordstrom’s I was shocked to discover that they are a 30DDD. They really don’t look that big and I think my frame carries and balances them nicely. I was a 32DD before ever being pregnant so I’m just closer to my original size and it doesn’t look unnatural at all. A recent shopping experience to seek out a bikini that won’t leave me with any nip-slip incidents at the beach. This shows the proportions of my new breasts well. They sound big, they are big but they don’t look plastic or ridiculous.

My mind is blown at how far this procedure has come since my grandmother’s unfortunate and tragic experience with her double mastectomy. I am so thankful for the progression of science and the progression of women’s rights….to be allowed to discuss my breasts with all of you without judgment.              

 I can’t even believe this experience is over and went so incredibly well. As you can tell it was a wild ride. My implants still need to settle into their final resting spot but that will take a few more months. This collage shows my pre-op breasts, my immediate post mastectomy beasts, then my chest expanders, them fully expanded and marked for surgery. My breasts right after the final surgery and then my breasts today. I kept my nipples, hence the roses. Wouldn’t want to arouse and or offend anyone on my mastectomy blog. (Eye roll so hard)

As for my Fallopian tubes- that was a quick procedure to recover from as well, I just felt crampy for a few days and had neck and shoulder pain, which is common. They went in through my belly button and got them out and my risk of ovarian cancer is drastically reduced… (as is my risk of pregnancy WHOO HOO!!)                                  I would do this all over again. It’s been a wild ride and I’m just so happy this chapter in life is over and I can live a long, happy and healthy life with my beautiful family. 

Seriously, they’re the very best. I couldn’t have done this without them by my side. They showered me with love and support. I feel like the luckiest person alive. Alive and well thanks to my amazing team of doctors, friends and family. This experience has truly been a huge blessing. Thank you everyone! xoxo

Expanding my horizons, and my breasts…

It has been a minute since posting…I’ve been feeling better… which led to a bout of stir-crazy-ness which led to me overdoing it so here I am back in bed. Rest is important. I swear I will find that special balance between resting and cabin fever. Let’s catch up. My pre-reconstruction process of my mastectomy has begun. In the past few weeks I have received two saline injections in my breasts, through a magnetic port under my skin. Having magnetic breasts is pretty cool and I will miss this part about having expanders… this was taken right before my first post-surgery expansion.

Breast expansion is a process over a few weeks to a few months of filling my temporary saline implants to my natural size. After that, my body heals from the final expansion for about 4-6 weeks to let the skin recover. Then I’ll have my second surgery to put the silicon implants in and I will also be removing my Fallopian tubes at the same time to eliminate my ovarian cancer risk. (And finally be done with it all hooray….eventually…one step at a time.) The expanders as I have mentioned before are quite hard but the silicone implants will be very natural feeling.  A needle and little rubber tunnel is attached to those tubes and I get about 120 ccs of saline in each breast at a time.

My expanders are placed behind my pecs and boy do I feel it with each expansion. That muscle is SO not in its home and it knows it and is yelling at me today. That makes this healing process feel much more like a circular journey. I get an injection every Wednesday. Wednesday is fine, it really doesn’t hurt, I just feel a tightness. However, Thursday is a bitch. Pardon my French, but today is a Thursday so you’ll have to excuse me. Thursdays consist of just trying to stretch & relax the muscle and riding through the discomfort until it passes. Each expansion is more painful than the last, the fuller my saline spacers get. I have about 3 more injections to go. I’m already feeling happy with the way they look. If you didn’t know everything I’ve told you and the process I’m going through, you would have no idea that I recently underwent a double mastectomy. It is amazing how far this procedure has come. I was prepared to lose my nipples, look unnatural and just accept it happily and completely because I evaluated my options and it would all have been absolutely worth it. That has not at all been my journey. Everything (knock on wood) has been going incredibly smooth. My doctor said that I was healing  as well as it could possibly get.  These are my breasts today, after my second expansion. As you can tell my cat is still not coping well with the fact that he can’t sleep on my chest. He’s desperate! My allergies have improved greatly since this new rule… Bonus! 

My current temporary spacers look semi normal, but they are strange. They are rock hard and sutured into place inside of me. So…they don’t move. I can’t move them at all. Not even if I try to nudge them. No dancing or running amuck for me for the time being. I am definitely looking forward to the permanent silicone implants! However, I can stretch my arms out like the letter ‘T’ now and touch the back of my head. Progress! My arms are no longer t-rexing exclusively. Although I do find myself naturally shifting to that position when I have to go out in public. It’s a protective stance. I keep my arms up so no one can bump into me. If a bus or a train is too crowded I have to let it pass, because I can’t lift my arm up to hold the rail. There are a lot of little things here and there that make it a little tricky to navigate the world but I’m out there giving it my best effort. As for my healing process, my nerves are starting to heal and let me tell you….It is a strange sensation when they reconnect. It’s electric. It can feel like little zaps, and sometimes feels like drops of water trickling over me. This is really awesome and amazing because it means I am getting some of my feeling back in my chest. I will never have all of it back, but getting some nerves back is a huge win for me! When I take shower I always check the temp before hopping in because I can’t feel the temperature on my chest, but my body still reacts. My nipples get hard in the cold, or when they are touched even though I can’t feel it. It’s all really interesting! Yesterday marked my 4 week anniversary since my mastectomy and it’s been quite the month. One part of me is like, ‘Wow, I can’t believe it’s already been a month!” While the other half is saying, “Wow I can’t believe it’s only been a month….” I will be transitioning back into the working world soon. I hope my arms get the memo when it’s showtime! Well. It’s time for me to do my new Thursday post-expansion ritual of chest exercises and muttering obscenities. ‘Till next time! Xoxo.
 This is just a picture of me appreciating the beautiful walk to my last doctor’s appointment. The weather has been killing it. That is all.

Hello outside world!


10/21

Today I had my first post-op doctor’s appointment. I have been feeling like I am healing beautifully and pretty fast but now I finally got to hear the real deal from the doc. She was in agreement with me. When she looked at my chest she smiled and clapped and said they looked amazing. (I will always accept this response when removing my shirt please!) The swelling has gone down so much. I am still pretty bruised up and my breasts are going through their rainbow kaleidoscope of color changes phase in different places as they heal. I trust her completely as she is a breast cancer survivor and knows this from the inside out. I gave her my drain tube paper where Tim and I have been measuring and writing down the output, frequency and color when we emptied my drain tubes over the past week and a half. She read over it and said that I could get my tubes removed right then and there! I was so excited! They’ve been hard to sleep with and just exist with in general. Not painful in any way… just tubes hanging out of my body…. ’nuff said. The removal process wasn’t painful at all. They cleansed my skin and removed the sutures holding the tubes in place and then she said to take a deep breath. The tubes were very long and kind of coiled in each breast. (Like a snake! Previous post connection) It was an odd sensation to feel the tube loop around and slide out but it really didn’t hurt. She did the other side and showed me the length of the tubes. I wish I would have taken a picture. Those babies were way longer than I expected. She bandaged up my side and told me to watch out for any weird lumps on the side, as it could be a little pus pocket, and sent me on my way. I sashayed into the world tube free! My friend gave me a ride to the doctor so we decided to get brunch to celebrate. At brunch I thought I was feeling incredibly sweaty. I felt drips going down my arm. I peeked into my poncho and realized I was covered in blood! Darn it. We got some napkins from the hostess and I dabbed up the blood off of my undershirt and stuck some napkins into the side of my mastectomy-camisole, over the saturated bandages and kept on brunching and having a nice time. I never got dizzy or anything, my body would have been releasing all that into the tubes anyways. It just needed a moment to realize that it was my body’s tissue’s time to start absorbing the blood. It’s all good now. I popped an iron pill when I got home to be safe and I’m feeling fine! It apparently did take a lot out of me to be in the outside world though because I slept for hours when I got back home. I have to keep reminding myself to take it easy and step by step. I have an incredibly high pain tolerance and I feel so mentally on and unstoppable. It’s hard for me to slow down sometimes. I have to chill and heal so I am back in cocoon mode and reading and coloring and taking it easy. All movie/show/book suggestions will happily be accepted! Thank you!

Praying Mantis Terminator

10/18

 Just waking up at 1pm…. haven’t done this since high school! Sick leave does have it’s upsides…
I have been having dreams heavily featuring snakes since my surgery. I’m pretty sure this represents my physical and energetic transformation as snakes often shed their skin. I’m shedding and rebuilding myself in a major way. I think the snakes are reminding me to stay grounded too, since they dwell on the earth. Another side is that snake venom can be poisonous, and that was true of my BRCA+ breasts. It may also stem from sleeping with my drain tubes and not wanting to bend them in any way. In any case I am feeling a connection to my slithery pals right now.  (This snake is my old pal Egon)

I had my first minor recovery hiccup. The drain tube from the side of my left breast was not draining. I tried “milking it” several times as suggested but it wasn’t helping. I really didn’t want to have to call the doctor so my husband and I sanitized our hands and a bobby pin. We were able to scrape out plasma from the tube that had totally been blocking off the suction and flow. I had been feeling dizzy all day and I think it was from my breast not draining. It was kind of a long process and my husband definitely touched chunks of my plasma…. I’m trying to brainstorm ways to show my gratitude to him for all of the incredible things he has been helping me through. So far all of my ideas pale in comparison to the level of amazing that he is. 

10/19


My personal mantra of the day: I am beautiful. I love my body. I love my scars. I love everything this spacesuit has gone through with me and I’m ready for the next adventure. I am currently a praying-mantis terminator and I am loving this stage of my growth. I can’t really lift my arms beyond this position but I can walk around without getting dizzy or off balance now. Tim and I went on a date to the movies last night to celebrate the one week mark of my mastectomy. It was nice to get out of the house and get fresh air but still keep it chill and not push myself too hard. I’ve been wearing a lot of ponchos and capes lately to hide my drain tubes and pose as a normal member of society. (?) Tomorrow is my first doctor’s appointment post-operation. I am hoping that she will okay getting my drains removed, as they have not been putting out very much blood or plasma. One week is a really short time to be hoping to get the tubes out, but that’s where my terminator self comes into play! I’m feeling pretty strong. I’m eager to to get permission to wiggle around like my manic self again. All I can do is wait until tomorrow and see what she says… The swelling in my breast continues to ease up every day. I have my temporary spacers in until we do the breast reconstruction. I will be getting some saline injected into them soon. The spacers are hard, like really hard. They do not feel like boobs. Thankfully my permanent silicon implants will be soft and more natural to the touch. I don’t really know what to expect. I feel like my boobs have taken on a life of their own and I am just their hostess and I’m kind of just looking forward to what they will do next. Crazy kids!One week post mastectomy. 

In the groove

10/16 I woke up feeling the most sore I have felt. My local anesthetic is empty now. It’s nice to be more aware of my body’s pain and posture and everything. Matthew is home today! He stayed the night with his dad when I was being hospitalized. Then he came home for a quick kiss and to check in and then he spent the entire 3 day weekend at his best friend’s house. I wanted him to be as heavily distracted as possible. I think it was best he came home today after we’ve already gotten a pretty good routine down. I think he would have worried too much and felt powerless those first few days. Today I also got to remove 2 of my tubes myself. Not my drain tubes, but my local anesthetic tubes. These tubes were so much longer than I expected. I felt like a magician doing the never-ending scarf trick. It was painless, just an odd sensation. The only painful part about it was taking off the tape that held it in place. My breasts are a bit less swollen today, still a little bruised. They’re doing great and looking great for being four days post mastectomy. My spacer bag is filled with saline to about a small B cup, I would say, just to keep the skin from growing shut. My doctor’s don’t believe in wrapping so the just taped over the incisions and I’ve been able to watch my breasts heal. It’s interesting. I will get my first saline injection in about 2 weeks to start building them back up to where they were pre-mastectomy. For now I’m just going to take things day by day. Minute by minute really. I can walk around fine but I need help getting in & out of bed. I have to keep my elbows in because it hurts to move them but my arms from my elbows down are totally functional. I’m pretty much just T-Rexing around the house. Everything has been going smoother than I ever could have anticipated. I’m not going to rush myself or push myself harder than I should. I am prone to doing just that. Tim has done a great job of reminding me that he is here to help so I don’t have to pretend like everything is fine if it doesn’t feel fine. I’m learning valuable lessons in love and life here people. 

Welcome home

10/13 Everything was coming along beautifully with my healing so I got to come home today. I’m feeling pretty darn great considering that I just had my breasts removed! It is hard dealing with my physical limitations, but that is all temporary. I am in good spirits and couldn’t be happier with the way everything went. My husband is a natural in the caretaker role and he truly has stayed by my side every step of the way to make sure I am not dizzy or going to fall when I have to use the restroom. He’s been emptying the drain tubes attached to my ribs and measuring my body’s output. I think he’s excited that I’m not being my ‘strong independent woman self’ right now and he gets to take care of me. I deal with pain very well and it all feels pretty moderate. Nothing hurts when I stay still. When I have to get up to pee or empty my drain tubes, that does hurt quite a bit. I constantly feel a heavy pressure on my chest, and occasionally get a sharp pain where the incisions are. My body may hurt but it’s not the end of the world. It’s all for a very very good cause. I brought my breast cancer risk down from 89% to 2%. I’m so happy that I did this. Recovery mode will be over before I know it. Update: having the hiccups is absolutely awful right now. My whole body shudders in pain when it happens. However i can only drink out of long straws because I can’t lift a drink to my mouth. A necessary evil.
10/14 The first night at home down. I had amazing sleep finally! I can’t really sleep solid because every few hours I wake up from the pain but I handle that and go right back to bed. My cat, Mr. Man, is having the hardest time with this. He is such a snuggler and his favorite place to sleep prior to this was on my chest. Tim and Matt understand why I need my physical space and know that I’ll be ready for snuggles asap….Mr Man has been extremely offended about being locked out of the room at night. All in all we’re getting into a groove. I have a cool bed situation with a little lap desk, lots of books and snacks. I can’t get out of bed by myself. I can’t put that pressure onto my body so Tim lifts me up and tucks me back in. He gets the husband of the year award, no contest! I have been getting care packages from my amazing friends and family. So many flowers and people coming over to water my plants and cook for Tim & I while we just maintain. It’s truly amazing and I couldn’t feel any luckier about this whole situation. I feel very full of love and I think that is why I am healing so well.

Ta Ta

10/12: The day I have been anticipating had arrived…surgery day! I felt so strangely calm. I just knew in my heart that I was making the right decision and I never second guessed my choice. I think that’s a great sign. I woke up and made everyone snuggle up with me extra hard while they still could. Tim drove me to the hospital and never left my side up until they wheeled my away for surgery. We checked in at 11:30 am and then it was nothing but paperwork and inserting needles and answering the same questions over and over again to the slew of nurses that kept coming in for various reasons. One nurse asked if there was anything special about me she should know and I responded thoughtfully, “I love cats and reading and I love tea.” Apparently she meant something more along the lines of if I needed a cane or other special needs things. Oops. I then asked if they had therapy animals and they confirmed that they did and they would be sure to have someone fluffy visit me after the surgery. Hooray! Finally it was show time and they gave me a shot of sedative and I said goodbye to Tim (not easy) and then we headed to the OR. My doctors sang me to sleep as they put on the anesthesia mask and it was really silly and calming. My surgery was about 5 hours long. They had to put a breathing tube down my throat because you can’t breathe on your own under anesthesia that long. (My throat is still sore from that.) Both of my surgeons were there, Dr. J who performed the mastectomy and Dr. Z who will be working on my breast reconstruction. They worked as a team during the operation. When Dr. J was finished removing all of my breast tissue on one side, Dr. Z came in behind her and inserted the spacer saline bags behind my pectoral walls. They worked in a circle and sewed me back up. My incisions are actually pretty small. They did not cut into my breast at all, because I chose to keep my nipple. This makes my risk about 1% higher of getting breast cancer. I figure if I get it at that point, it’s meant to be. The cuts are right under my breasts from about 6:00 to 9:00 on a clock face. I remember coming to in the recovery room with a few doctors and nurses standing around me, smiling and laughing. They all said that I was funny and sweet and they want to keep me and take me home. I have no recollection of anything I was saying to them. They wheeled me to the hospital room where I would be staying the night. I kept asking about Tim and how he was doing. I was so worried about his poor nerves while all this was happening! They finally got him after what felt like a million years and he came into the room with a giant stuffed dog and lots of hugs and kisses. He looked very relieved. Not too much else happened in the hospital. Lots of pain controlling medicines, lots of snacking finally! (You can’t eat for 12 hours before surgery. That may have been the hardest part of all of this for me! You can have my murderous boobs but don’t take my snacks away!) We had some classic horrible hospital sleep. Time stopped existing in there. I decided that instead of getting hung up over having these new scars on my body, to embrace them instead. The Bride of Frankenstein is a total babe, and she’s got stitches for days. So I humbly and woozily played tribute to her in the hospital with a black wig that I had painted white on the sides. They say laughter is the best medicine… I know I will heal faster than Wolverine because Tim and Matt are the silliest and most supportive team I could ever hope for.