The Worst Question to Ask a Mastectomy Patient

I had a follow-up appointment today to have my JP drains checked. Two of the four drains are out now and the last two are feeling slightly irritated. The fluid draining out of each side is hovering around 50 ml per day, still not low enough to take them out. Regardless, they have to come out at two weeks post-op, so they'll be removed in two days anyway. This is certainly a moment to look forward to.

I saw my doctor today for what will be the last time for quite awhile. She'll be deploying to the U.S.S. Iwo Jima for a time. By the time she comes back, I'll have already gone through a second major surgery to remove the tissue expanders and place my breast implants. Also a day to look forward to with great anticipation. I promised to stop in when she gets back from deployment and show her my new boobs. LOL

After leaving the plastic surgeons' office today, I headed to the pharmacy to pick up some refills on the prescriptions they gave me for muscle spasms, as the tissue expanders tend to cause spasms. After a short wait, my number was called and I stepped to the window. The nice pharmacy tech took my military ID and asked me to state my full name and birth date. Following what I know is a strict script, she proceeded to ask me, "Are you pregnant or breast-feeding at this time"? I looked at her and began to laugh before glancing down at my chest. As I looked back up at her she was staring at me like I was very strange. I couldn't help myself. I said, "I know you don't know my medical history and I hope you find this as amusing as I do, but I just had a bilateral mastectomy last week . . . so, no, I am not currently breast-feeding." I don't know that she found it as funny as I did, but it was definitely my comic relief for the day. :)

My Baby Knew Me and I Was Different

My parents came home today to bring the twins. They kept them in Texas for 2 weeks in order to help me recover from my mastectomy. In two weeks they'll be one year old. They've changed so much just over the last two weeks since I've seen them. I know it's even more evident and maybe a little heart-wrenching to Arie to see how much they've grown without him. The time didn't seem to matter much once Lisse heard the sound of her daddy's voice. She smiled as if yesterday were the last time she'd set eyes on him.

Karter smiled at me, tongue hanging out as usual. He seemed so happy to see me and everyone else. Then again, he's such a naturally happy boy. Arie held him for a time, then placed him on my lap. As he sat straddling my legs, facing me, I was overwhelmed with joy. His soft gaze melted my heart and we were as we always were, one. He laid his head on my chest to cuddle into me. It was such a familiar place for us both. He stayed only a moment before lifting his gaze to stare at my shirt, then up to my face. Again, he laid his head softly on my chest - and again, only lingered a moment. He reached his little hand up and felt my chest, specifically where my right breast used to be. His gaze turned quizzical and he stared into my eyes for a moment before turning his attentions to other endeavors. I knew then that he knew - Mama was different.

As I sit here writing this, I hear the sounds of joyful play and banter coming from the livingroom only feet away. I'm having a hard time joining them because I don't want to stifle their joy. The tears stream from my eyes and somehow I feel less whole, like so many others who have gone before me. Yet, my emotions have still taken me slightly off guard. I needed a moment alone to contemplate the condition of my heavy heart.

My Mom came into the kitchen a few moments later to make bottles for the babies. Using the microwave, she began to heat a bottle, but couldn't figure out which buttons to push. She said, "Why can't I remember how to use this?" I couldn't contain my anguish and tears as I softly blurted out, "Probably for the same reason I can't tell you how many ounces of formula my babies need now before bed . . . you haven't done it for awhile!" I laid my head on the counter and sobbed. My heart was bleeding and the whole family knew. Arie placed his hand on my back and after a short time, Mom hugged me close.

Later, once most of the house was asleep, Mom shared a story with me. It's one I've heard many times, though now it seemed even more poignant. When she was pregnant with my older brother, my older sister used to sit on her lap and lean forward onto her pregnant belly. That was my sister Lori's favorite place to be, laying over Mama's belly. When Mom came back from the hospital after delivering my brother and Lori sat on her lap for the first time, she leaned forward, then leaned back and gave my mom the most heartbroken look before bursting into tears. She knew Mama was different then too. A part of what gave her such comfort was obviously missing and she was devastated.

As Mom shared this story with me, I felt a sense of relief. It's hard sometimes to let my Mom see me so transparent - to view the rawness of my heart. Something in me is compelled to protect her from my pain. But in this moment, she connected with the nerve-endings of my heart and mind and coated them with a salve that sometimes can only come from Mom. She gave me at 38 what I was not able to give my son at 11.5 months - comfort.

Oh the Places My Feet Take Me

A friend asked me some time ago to write about what inspired me to create my photo album of "The Things My Feet Do". To be honest, I was inspired by another friend who daily chronicles her family adventures through photos. The fact is that one day, May 27, 2009, to be exact, I had my feet propped up on a pillow on the coffee table. I was busy posting a message on Facebook about our then recent move to Okinawa, Japan, where I had gone to await the birth of my twins.

As I drank coffee and glanced at my feet I began to observe the changes pregnancy brought even to my feet. I further pondered that through all the trials of my life, my feet have carried me the distance. We have traveled the world together and experienced everything from wonder and exhilaration to the mundane. It occurred to me that as we continue our walk through life that perhaps I should chronicle the places they take me, good, bad, or indifferent. My feet have walked, run, or drudged me painfully:

to my parents for comfort
to friends for commiseration
to the airport for a prom date
to the airport to visit a parent
to the doctor when I was afraid I was pregnant
to the doctor when I hoped I was pregnant
to the graveside to bury my dog
to the graveside to bury my Mammy
to the graveside to memorialize my husband
to my country's Navy for patriotism
to my children to soothe
to my mother's side for chemotherapy
to college classes for my education
to neighbors to extend my friendship
to new friends and adventures waiting to be discovered
to my husband to welcome him home from deployments
to the top of Mt. Fuji
to three continents
to the greatest of my fears to overcome them
to the surgeon to remove my deceased child
to the surgeon to remove my breasts
to the altar for prayer

Through trials and tribulations, joys and triumphs, I will continue to celebrate the gift God has given me that keeps me moving forward in faith. As Psalm 119:105 says, "Thy word is a lamp unto my feet and a light unto my path." May He open my eyes to opportunities to capture my feet in action and may He receive all the glory for the places and times He moves me through. It's all an adventure and if I can capture only a few fleeting moments of those times, perhaps others will be compelled to see the possibility that their own lives are just as much an adventure unfolding before them.

This photo was taken June 14, 2010, on a zip-lining trip with my son with Navitat Canopy Adventures in North Carolina. This photo represents to me all the heights I will go, adventures I will embark on, and difficult paths I will travel if only I am willing. I just have to remind myself that the greatest acts of courage begin with one step.

Numbness

Obviously the surgery would involve cutting through nerves. I knew going in that I would not have the same sensations as I'd had before. I expected numbness and I've heard that each person's outcome is different. Some people begin to regain feeling in their breasts as nerves start the process of reconnecting. In some cases, according to my aunt who has undergone this surgery, a person may find herself years down the road scratch her skin in one spot and feel a tingle in another. Nerves are an amazing construction within the human body.

I wonder how much feeling I'll get back. Mostly what I feel at this point is a feeling similar to being numb in your mouth after getting a shot at the dentist's office. It's like that moment just before you're completely numb and ready to be drilled on, sort of the twilight moment when you still feel pain if touched, it's just dulled dramatically. This has been a blessing during the inflation procedures where they push needles through my chest into the tissue expanders (TE's).

I hope the sensations return to a great degree, but if they don't I guess it's just he price I have to pay for the decision. I still don't regret it, though one thing I'll miss is the feeling of my nipples being stimulated, either by the cold or by my husband's hand. It's a sensation we take for granted. In a way I wish I'd paid greater attention to that the last time I experienced it because I understand it will never come again.

As a good friend often says to me, "Note to self." Well, I'm making a note. Try harder to explore and appreciate the little things because you never know when they'll be gone.

Grand Central Mastectomy Station!

Though I've lived through a number of previous surgeries, I recall waking up from this one in a fog unlike anything I'd previously experienced. If my awareness was intact, I would say they had already moved me to the room I would call home for the next 24-48 hours. The fact is I spent nearly exactly 34 hours in the hospital from the time I walked in the door and checked into the surgery department to the moment they wheeled me out to my car. It all happened rather quickly.

Just as I was coming out of my deep, anesthetic fog, I became aware that another patient was being wheeled into my room and taking up residence on the other side of my curtain. Noting the use of the word "my", I realize that it was intentional. Initially, I felt violated and offended that I would be made to share this moment of my life with a total stranger - a fleeting thought before drifting back into a deep sleep . . . little did I know.

It seemed to me that Arie and Koen were by my side in a flash. I think I even recall Koen hugging my head like we'd agreed he'd have to do. I was so groggy, in and out of sleep that I remember nothing that went on around me for several hours. I only remember a button being placed in my left hand, which I was supposed to push for morphine as needed. Wow, was it needed! I pushed it every time I became conscious and could see the soft green light of the button glowing. There was another button in my right hand in case I needed to call the nurses station. I tried not to use that one too much, but occasionally I had no choice. At the time I hoped I wasn't bothering them. Isn't that funny? I know some patients can be a real pain and I was determined not to be one of them. I hope I used the button sparingly.

Eventually, the anesthesia began to wear off more completely and I realized my mouth was very dry. They wouldn't let me have water, but eventually gave me a sponge on a stick to moisten my mouth. I had been put on a no liquid/no food diet. Initially, this was an issue for me because I really wanted something to quench the horrible thirst I was having. My loving husband had gum in his pocket and I talked him into giving me a piece. It was heaven! It gave me saliva and I suddenly felt like an actor in one of the gum commercials where I was the one receiving the "burst of flavor"! This euphoria last maybe 15 minutes before the taste began to make me nauseous and I spit it out. Confessing my indiscretion about the gum to my doctor, he gave me an anti nausea medicine and I forgot about the dryness of my mouth or the rumbling in my stomach. I spent the rest of the evening in an out of sleep, not even thinking about food, but fantasizing about ice chips.

Arie eventually left to take Koen for dinner and home since work would come early in the morning. I was a little thankful for the time alone until I became acutely aware that my neighbor had three family members with her. I tried to ignore their conversations, in part to be polite and in part to sleep. It became increasingly more difficult to tune-out the sounds of their voices as a creeping awareness came to me that she too had undergone a bilateral mastectomy. I was overwhelmed with an urge to talk with her and searched for the most considerate opportunity to inject myself into their conversation.

She had her husband, sister, and father at her bedside. I think she was 60 years old, but didn't look much more than a day over 45 even right out of surgery. She seemed to be handling coming out of anesthesia better than me and I was self-conscious that I wasn't being a "good patient". At about 8:15 pm, the hospital pa system announced visiting hours had come to an end and asked all visitors to leave. I was relieved that maybe now I could sleep, uninterrupted by the conversations going on beyond my curtain and by the staff in and out of the room. I faded into the darkness where there are no dreams, no consciousness whatsoever. When I came around everyone was gone and the room was quiet save the occasional beep of an IV machine.

Now, for anyone who would imagine that a hospital is the place to go for rest, even after a surgery, think again! My roomie and I each had our own set of staff caring for us. It was Grand Central Station! Much to my surprise, this is where and when my healing would begin, between the lights flicking off and on, the buzz of blood pressure cuffs, rushing water in the sink, or flushing water in the toilet, and all the words pouring from the mouths of a seemingly endless stream of one new stranger after another. In the midst of it all, a beautiful thing happened - I made a friend, my roomie, Carolyn.

Pulling the Rip Cord

Many years ago I took a trip with my husband, son, parents, and older brother to Six Flags in Dallas, Texas. I don't recall too much about the trip, but one very important event took place that is forever a part of me.

My brother Ross and husband Arie saw a ride called Dive Bomber Alley. They hook you up to heavy duty harnesses and connect you with your riding buddies. Then you are all connected to a massive cable and hoisted 15 stories above the ground. Once in place aloft, an announcer starts the countdown . . . three . . . two . . . one . . . pull! The one person in your group who has been designated to pull the rip cord to release you all at that last command has to pull the cord and you are sent soaring downward 15 stories until the cable catches you and you soar out above the awed crowds, swinging back and forth, all the while probably screaming at the top of your lungs either from shear adrenaline or absolute terror!

I insisted I wanted to be the person to pull that cord. I'm not sure why. I was even slightly concerned at the time that I wouldn't be able to follow through when the time came. I recall my brother swearing as we were being pulled upward. Truth be told, we were all a little freaked out. Then came the countdown. On pull, I didn't hesitate one nano second. We soared through the air screaming with fear, delight, a few expletives, and my brother saying he hated me. LOL It was a good time that we'll never forget and some of us may never do again.

Flash forward about ten years . . .

Just as the surgical staff was preparing to roll me back to the OR for my bilateral mastectomy, I asked Arie if he remembered that particular ride. Together we recalled the rip cord - no choice, no hesitation, and complete faith that the equipment would take us safely back to earth. During the planning, appointments, and pre-op for this surgery, I appeared resolute, even stoic perhaps at times. At that moment, my husband saw my first tears as I told him, "I'm pulling the rip cord" and he kissed me and understood.

Last Minute Hugs Before My Mastectomy

My surgery was this morning. Koen sat in the surgical waiting room while Arie walked back with me into the OR prep rooms. I looked on the board of the day's procedures and saw that most people were having minor surgeries, though it did stand out to me that there was one other person listed to have a bilateral mastectomy as well. I didn't think much more about it at the time.

The nurse took us back to my very own screened-off prep room where I was visited by numerous doctors, nurses, and hospital corpsmen. The air was thick with the sounds of medical jargon and the rapid movements of people on a mission. We were only the first group of the day to go under the knife and one could tell they intended to be on schedule.

A lovely man (who as it turns out spoke Japanese because his wife is from Kawasaki) stepped into my room with a soft expression on his face. This soft expression was repeated by each person I came into contact with during this whole prep phase. He was kind and informative, proceeding to explain the risks of anesthesia, as he was my anesthesiologist. He checked my airway for size and took some medical history. Accompanying him was a nurse. After placing my IV, which was quite pain-free might I add, they both stepped out. It turned out there would be a load of personnel attached to my case.

A moment later, three nurses stepped in. One was the assistant to my plastic surgeon, Dr. Honig. She was there to make marks on my breasts where the breast surgeons would need to make the incisions. I recall her name was Debbie and she wasn't happy that my "room" wasn't more private. The other two nurses held up a bed sheet behind me while she opened my gown and marked all over both breasts with a purple permanent marker. She finished quite quickly and was gone as swiftly as she'd arrived. I was alone again with Arie, not that we had much time to talk because there were many interruptions.

Next I was visited by Dr. Honig and two other doctors. His expressions were softer than when we'd first met. One of the other doctors appeared very stoic, the second kind and warm. His name was Zach and his looks reminded me slightly of my brother. His hand was soft and comforting and as he took my hand to shake it I felt sense that all was well with the world. He and the stoic doctor again held the bed sheet while Dr. Honig drew even more marks on my breasts in a different color of permanent marker. They too left as quickly as they'd arrived, leaving me feeling slightly like a road map.

Dr. Wilson finally arrived to answer any last questions we might have for her. She informed us that she and Dr. Early would be working in tandem to remove both breasts simultaneously so as to reduce the amount of time I would have to be under anesthesia. I would later be very glad for this consideration, as I had quite a difficult time coming out of anesthesia. I asked her with a chuckle if she had called dibs on any particular breast. She said that if one breast were cancer positive she would have taken that one, but since neither had cancer they would probably just flip a coin. After our brief conversation and a hug, she said she was stepping out to gather the team for a last minute briefing before my case.

It occurred to me how close I was to going through one of the hardest things I've ever done. Then suddenly, I recalled that Koen and I had agreed to give each other a bear hug before my surgery, since it might be the last one we would have for awhile. I asked Arie go get him and sneak him into my room so that I could hug him. He disappeared and quickly returned with Koen in tow. I saw their feet under my curtain before they appeared. It was funny how just seeing Koen's shoes gave me comfort. He stepped in with a smile and immediately came to me for a hug. I said, "We almost forgot." I hugged him like I've never hugged him before and suddenly wanted to cry - and I did. I knew there wasn't much time left. I hugged Arie too, quietly crying before my stoicism began to set in.

Koen stepped out with Arie when I asked him to find me a piece of paper and my pen so I could jot down a few thoughts before they took me back. He arrived with the paper and my pen and I was just beginning to formulate some thoughts when the anesthesiologist came back to give me a shot of "something to relax me" through my IV. Arie gave me one last hug and left to collect Koen so they could go swimming. At my insistence, they were not going to sit in the surgical waiting room wasting four hours of a beautiful day, so I sent them off for breakfast and a trip to the pool. I recall thinking that I'd better hurry and make notes while I still had a moment alone. No sooner did I pick up paper and pen than the curtain was drawn back and they said they were ready. The last thing I recall was putting my paper and pen on my lap, thinking even then that was a bad decision since they'd likely be gone when I awoke. Of all the things I could lament at a moment like this, it was the loss of my pen and paper - and as the voices faded away, I never felt the bed move. There was no turning back. I was on my way.

Bilateral Mastectomy - Thoughts the Night Before My Surgery

I'm preparing myself for the hospital tomorrow. I have to get a shower with antibacterial soap both tonight, as well as in the morning before we leave. The nurse said I can't put anything on my body like lotions, perfumes, deodorant, etc. I can't wear any jewelry either, just my birthday suit. That's okay, it's more comfortable anyway. I did have the thought yesterday that I'd like to keep my wedding ring on. That was an odd thought. I take it off for other reasons and never have a problem, like when we go to the pool, or to the gym, or cleaning house. Something about having it on made me feel a sense of comfort. I guess maybe it's the feeling that somehow Arie would be in the room with me, instead of me being surrounded by strangers. Well, home it will stay.

I received a call from the hospital to inform me to arrive at 5 am for my surgery. Even though I've been preparing myself for this moment, it still opened up a wave of emotion. I suddenly felt the urge to cry. It's not that I'm trying to be stoic. I've sort of approached this bilateral mastectomy from a "taking care of business" mentality. I still feel that way, although now I'm thinking about what it means to be a woman. I'm going to explore this idea further as I go through this process. I don't feel empty about the thought of losing my breasts, but I suspect I will feel scarred. Isn't that okay though, to see the scars of the events of your life and be reminded of your humanity? There is a song that says, "Heal the wounds, but leave the scar - a reminder of how merciful You are." Some scars we choose, some are inflicted upon us, but either way we are reminded that we survived.

I asked my son Koen if he had any questions or concerns. He wanted to know if my chest will be completely flat when he sees me again. We agreed that he will have to give me a really big hug before my surgery since he will only be able to hug my head for awhile afterward. I won't be able to lift more than a milk jug, much less receive bear hugs. It'll be nice to get hugs and sugars going in.

We watched a movie after dinner, "The Mighty Ducks". Hm. I wonder what parallels can be drawn there? I'll think on that more later as well. Arie and I shut the lights off and walked toward the bedroom with our arms around each other. He asked me if I was feeling scared. Hesitantly, I said no. I'm not scared, just full of contemplations of which ways my life will change after tomorrow. He said, "Have you looked in the mirror and . . ."? I gave him an ending for his thought, ". . . and said goodbye to my girls?" We both had a good laugh and he said that maybe if we spend time laughing about it, it will make the whole thing easier to deal with. I was thankful for those few moments of levity with my husband. He's mostly quietly supportive and strong.

It's important to me to document this experience. Some day it may make a difference to another who would read it. I'll write more as time permits and inspiration befalls me. For now it's off to the shower and to bed for about five hours sleep before the alarm goes off and the adventure begins.

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I was just walking to my room to go to bed, turning up a cold bottle of water and contemplating the "don't have anything to drink after midnight" surgery rule. I tend to act out a little defiantly when it comes to that rule. I'll grab that bottle of water and in an act of almost rebelliousness, guzzle the whole thing! Of course, the clock only reads 11:59 pm when I'm done! LOL I just can't seem to be a true rebel. Anyway, I digress.

I was about to lay down when it occurred to me that this is my last night with these boobs. Wow! I thought for a moment that maybe I'm not doing them justice. The least I could do is pull an all-nighter and "roast" myself! LOL We've been through a lot together! I thought maybe I should feel a little more like I do the night before a big trip or the night before I sing. You know, I should be experiencing a heightened sense of "who could sleep at a time like this"? On second thought, I'm really ready to call it a night. I'm so 38 . . . rolling up the carpet at 10:46 pm!