Tag Archives: double mastectomy

My ReBirth Day

The most outwardly feminine part of myself, I took to the altar and offered up to the gods. I bargained for my life. When I could finally form words into a semblance of prayer, it was “Take my breasts, but let me live to see my boy grow into a man. Please!”

I was the first woman in my line to benefit from the advances in genome mapping, the first to test positive for the BRCA 1 gene mutation. The “Angelina Jolie gene” as people have come to think of it. Grandma had died before I was born, not long before I was conceived. She was ravaged by breast cancer and lost the battle at the age of 58, one year older than my Mother is now, and nearly the same age Mom learned that she too caries this ticking explosive in her coding. Viola was her name, and in 1973, the butchery done to her bore no resemblance to modern day reconstruction.

I grew up hearing, “Cancer often skips a generation,” and like prophecy I found that lump in my left breast at the age of 36. I told no one, but I was sure I would die. A curtain had dropped somewhere between diagnosis and the third opinion. When I tried to imagine life after surgery, there was just blackness, a void of absolute nothing. I wore my best poker face that morning in pre-op, chatting bravely for Mom and for my husband, Joey, for I could never let them consider this was a one way trip to the hospital. Inside I felt I had been led to slaughter.

I went in there and let them lop off and scrape away every last bit of breast tissue. Then like Frankenstein’s whore, implants were crammed in on top of freshly scraped ribs. They were sandwiched between pectoral muscles that were pried up like thick clams to hold the implants in place.  Surely going for aesthetic, as is a plastic surgeon’s job, his calculation for pain held little thought. No measure of research or soul search could prepare me for the searing reality of nerves severed, of nipples excised. My brain could not compute as all the signals flashed red, an angry train of phantom feelings, the demonic ghost baby sinking teeth for the well gone dry. In morphine addled delirium, I cried, “I told him I was fine with the B cup! He did whatever he wanted!” The swelling and tightness was more than I could manage, morphine and later oxycodone barely floating me through each crashing wave.

I am one year a survivor now. It has been one year since that July 15th double mastectomy which included removal of three sentinel lymph nodes, confirming the Triple Negative tumor had not breached the lymphatic system. I was “lucky” to have found it in an early and treatable Stage 1 the previous winter. Julian was using me as jungle gym, and I felt a stab of pain right over my heart when he climbed on my chest. I brushed it off for 2 or 3 months as just a swollen lymph gland. Although I am sure I have changed, surgery and the chemotherapy that followed could not stop the force of who I am.

If only there was a way to have reached through that inky black uncertainty, to have touched myself on the arm with a sisterly stroke of reassurance. I would go specifically to the day right before surgery, when I lost my shit and punched a hole through the bathroom wall, my rage parting drywall like soft cream cheese. I would sit on the edge of my bed that sleepless night before my first chemo treatment and show her the scar where the port used to be. I would let her run her fingers through my crazy thick hair when she is at her most bald, the eyebrows and eyelashes jumping ship too.

Slogging through each painful, exhausting day, there is a momentum forward that can only be appreciated from the top of the mountain. Now I pause on the adjacent peak, just one version of my future self that was unknowable to me while I marched straight into my terror and uncertainty. The view, which was obscured entirely at the start of this journey, stretches in panoramic possibility.

This June I resumed the Life Coach training program I had embarked on just 3 weeks before that shattering diagnosis. I wasn’t sure I had it in me to navigate New York City. I felt like I was barely formed and far too soft for such a hard world. Sweat poured from my face as I dragged that wheelie suitcase from Port Authority into the subway going the wrong direction. Pinched for time, I jumped into a cab, and soon we were gridlocked by a manhole fire, just before the cabbie clipped an SUV. While the two drivers screamed at each other, while I was feeling pathetic for getting lost and being late, I nearly gave up on my dream. After all I had been through, it was my deep shame at showing up late, at feeling like a complete farce that almost turned me around.

In spite of having the rug ripped out the year prior, the minute I sat back in that circle of classmates, and reconnected to this transformative work, I knew this was my path. My heart grew in resilience and pumped up fresh wisdom from a well of compassion previously unknown to me.  I found a direct line to the eternal part of myself that, although obscured, had pounded the drum to deliver me here. By the end of the seminar I had rededicated myself to this vision. I had fully emerged from the chrysalis and kicked off that remaining bit of identity of, “Melissa the cancer patient”.

Returning to the city last weekend, I chuckled to myself in realizing Port Authority is really only 5 blocks or so from the hotel where we meet. I remembered too that I have GPS capabilities on my phone to fall back on and began to relax in the stream of people flowing all around me, life in its varied colors, smells and dialects carrying me forward.

ReBirth Day

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As Good as it Gets

Where have you gotten lost and given up hope? Perhaps that place is so small, so stuffed down that you have nearly forgotten it all together. You know it though, that twinge of sorrow or regret, a little sigh of “maybe tomorrow “.

For me this came up in the form of, “This is as good as it gets. At least I am here.” Specifically, I am referring to the changes that surgery brought to my body. Here we peel back another layer, the residual effects such a radical alteration of the body may bring. So far in my writing I have processed shock and loss, grief and body image, sensuality and femininity. As I get closer to the one year anniversary of my July 15th double mastectomy, I notice that I still can not do all the things I have done before. I am feeling limited and restrained by this new body, the pectoral muscles lifted off my chest wall, these implants ever seeking to drift to the sides, pushing against the insides of my arms when unconstrained. The tightness of scar tissue always reminding.

I was once a fierce warrior princess, at least in the fantasy realm of my mind. Outwardly I felt no limitation. If I wanted something badly enough I could find a path to it. There was fierce determination to the point of recklessness. I hated to ask for help. Now I grapple with jars of pickles, with plank position in yoga. I feel geriatric in my attempts at stretching and I almost stopped at, “Oh, this is as good as it gets”….

…until three weeks ago when I met my physical therapist. I seriously almost canceled my appointment because, look, I’m here. I’m alive. I can lift my son. I can carry a bag of groceries. This is as good as it gets. Right?

Keri did an in depth interview. Her no nonsense attitude and calm-centeredness put me at ease, made me curious -let’s see where this can go. I have nothing to lose. After taking her measurements on my flexibility and strength, she got on her soapbox:

This is unacceptable! I bet you thought, “oh this is the way it is now, right? I see so many people, women in particular, who just put their heads down, grit and bear it. That is no way to live! We can do better than that. We are going to get you strong and flexible again.”

This is kind of how I imagine a “Born Again” experience might be. Keri just walked on water. I left there feeling so ignited and more hopeful than I have felt in almost a year.

Will I return to mixed martial arts? Probably not, but what a gift to be handed back your hope! Each time I stretch and reach and lift I am building neural pathways and new muscle. I am pushing and growing for it is not enough to just be here.

I dare to want more.

Scar Tissue

anesthesia

The brain heals memories like scar tissue. Little pockets of betrayal, oozing pustules of heartbreak, shards of anger encapsulated, slowly covered up by a thin layer of skin and hardened there. If you’re lucky, if you massage the memory just a little but not too much, you’ll end up with a scar you can live with. Sometimes the memory is still too fresh, the membranes of remembrance barely fused together, leaving obvious traces still hot to the touch. Just a wrong look from the wrong person at the wrong time causes the seam of it to weep and there I go getting undone again.

I clutch my hand to my chest to steady myself and hope to hold back the fever. This one is too soon to even remember, a baby of a memory, threatening to break me open and take all my insides out with it. I can’t sing myself a lullaby of denial and go back to sleep. An unspoken part of me wishes I were an alcoholic, so maybe the bottle could keep this under wraps. But I’m not, so here it comes again. These words will undo me and maybe do me in.

The too soon time of which I speak, the one I hope to fade to memory is that of my surgery. My double mastectomy with immediate reconstruction that took place last July left wounds that are healing far faster on the outside than in. “Give it time,” a rational person will counsel. But a memory, just like a wound is breeched if you get too close and you rub it the wrong way. Thanks to mass media and Angelina Jolie, most people by now have heard of the BRCA gene mutation, which is the culprit behind hereditary breast cancer. Discovery of that lump in my left breast a year ago soon led to genetic testing, and the revelation that my mother too caries the BRCA 1 gene mutation. My soon to be 57 year old Mom, who has never had cancer, is about to undergo a prophylactic double mastectomy.

At this point, the universe is just messing with me. My mother’s surgery has been rescheduled twice now. The first time, I was at her house dog sitting and she was at the hospital about to meet with the anesthesiologist when the surgeon came in and canceled the whole thing. He sent her home that day because he said he had been up all night thinking about the complications that I had, and wanted to take an entirely different approach than what was planned for that day. The second time the surgery was rescheduled because my Mom had to have a non-elective surgery first, to remove a bile duct stone.  Each time the date is set, a countdown begins inside of me. Now a third date has been set, and on the outside I am steady and supportive, upbeat and positive when I speak with her. We talk about practical things, like button up shirts and rearranging her shelves so she doesn’t have to reach for things. Like me, she wears a good mask of efficiency and organization. Like me, is she scared shitless inside?

There is no way to really prepare yourself for a major surgery like this. Doctors and nurses will gloss over your concern with a gentle smile and tell you it won’t be that bad. (They tell you this because, A. They have to, and B. They just don’t know, and C. They want to comfort themselves and won’t you please stop asking the hard unanswerable questions.) You can read all the pamphlets, books, blogs, websites and forums you like but in the end the outcome is the same. You will be on the table facing the blade, your skin will be cut, nerves will be severed, tissue removed. You will be sewn back together. Anesthesia will make you groggy, grievously sick and later constipated. Drains will awkwardly protrude from under your arms and collect bloody fluid for you to measure, record and dump twice a day.

It is the searing pain that I am most afraid of… even afraid to tell of because it hurts to remember and write about. Waking up, with the anesthesia wearing off, even fully loaded with morphine, it was like a Mack truck smashed into my chest and I was left with a load of cement on top of me, pushing against each breath. The nurses were eager to get me out of bed to walk to the bathroom or stroll down the hall. I thought they were completely insane. It took so much effort and another morphine drip just to sit up and leverage myself against the bed. You can’t use your arms to push up off with or steady yourself. I remember teetering towards the bathroom and then came the challenge of wiping myself. The first week, I could take care of #1, but really couldn’t reach my backside. There goes privacy and dignity. Hopefully someone loves you enough to know you in this more than biblical sense.

I spent less than 22 hours at the hospital from admission to release. It seemed the sweet and doting night nurse had been replaced with a hard, cold and unfeeling morning nurse whose job it was to make my stay so unpleasant, that I would be eager to get in that wheelchair and scoot my agonized self out the door. It was the longest 45 minute car ride of my life, as I could feel every little bump and turn in spite of being padded with a fortress of pillows. My long, unpaved and potholed driveway had just received an emergency last minute load of gravel by the landscaping company my step-brother worked for. It was a crazy scramble to make happen on short notice, but after I threatened to walk up the ¼ mile driveway, everyone knew it had to get done.

I vomited every last bit of anesthesia out of my body the first night home. With nothing able to stay in my system, every wretch wracked my body with hot searing nerve pain, and I felt every bit of it. I remember my husband saying, “This is fucking insane. How could they send you home like this?” Those first few days are hazy to me, but my husband says that everyone was falling apart. Our four year old son had to be barricaded out of the bedroom and could only visit me with careful supervision. Everyone was worried and regressing. Both the cat and our son were shitting everywhere. My husband’s neck and back had seized up so bad, that I thought I would have to call my Mom to come stay with me because he was falling apart. I pray we will never have to live through something that hard again.

Think of how delectably sensitive your nipples are, then imagine having them cut out along with all the nerves and tender tissues below. Every time I was caught in a slight breeze, or touched a certain way, stabbing nerve pain would radiate from my phantom nipples. I was having phantom milk “let-down” feelings again, where a nursing mom feels her milk ducts release. It was a knife in the heart to have to hold tender memories of nursing my baby at a time like that.

Sleep could only happen in 3-4 hour windows while the narcotic pain relievers did their job. I would escape to dreamless sleep in a semi reclined position, my back and arms fully supported. My preferred method of side-sleeping was not possible until about two months later. I was sewn up tight and fragile and walked that way too, my shoulders sort of hunched up and frozen like a turtle caught without it’s shell. For about the first 3 weeks, I learned to manage with a regular 4 hour dosage of oxycodone or hydrocodone, then I was cut off. The doctor felt I could manage with Tylenol, which didn’t even come close to touching the pain. I had to learn to feel the pain in a whole new unmedicated way.

I suppose surgery is like childbirth in the way the body can go through such a shock, such profound pain, and find a way to heal, to bounce back in some respect. I didn’t have a beautiful bundle of joy to take home at the end of this excursion though. I was the helpless baby, crying and inconsolable, until I found that it hurt too much to cry, that I was too dehydrated to cry. No one could hug or hold me anyway.

I want to comfort my Mother. She has seen my nippleless breasts, and the meandering snake of a scar on my left, the horizontal crescent moon on my right. On a braver, happier day I have proclaimed that I am more comfortable in my skin than I have ever been since the day of the surgery and that she too will one day get to this place, with time and healing. We try to make light by rejoicing at the miracles of plastic surgery, to be able to have your boobs on your chest again, rather than lugging around saggy, tired “Nat-Geo” breasts that droop down towards your navel.

I just don’t want to face this surgery again. I want to save my Mother from the pain she will endure. A very small childish part of my brain thinks this is happening because of me, because of the lump that I found. I’m sure she had to face that same demon, to see her little girl suffer because of a genetic trait passed down. Really this is no fault of our own. Still, could someone please put me to sleep and wake me 6 months later? Logical brain knows that this is the best choice… the right choice. Those breasts that had nourished me as an infant, just might kill my mother. If she chose not to have surgery, intensive screening every 6 months might be the thing to kick that cancer gene into action.

Each time this is rescheduled, we play with time, we play the odds game. There was no one to save me from facing this surgery. The countdown continues. Tick… Tick… Tick…

Mostly I Feel Grateful

I manage with a healthy dose of denial. Don’t waste too much of your day fretting over what is further down the pike. Just get through today, chin up, with an occasional look down so you know where the next foot is landing.

I knew this surgery was looming, and tried to brush off the cold feet feeling that started to creep up this last week. Sitting in my pre-op appointment waiting for the surgeon today, the feeling was nothing short of trepidation. The run of self-talk went from, “This is the home stretch girl –you got this!” to “It’s not too late to back out now. Leave well enough alone. So what if you’re uncomfortable and asymmetrical.”

What surprised me most was the deep well of feeling that reared up again while the surgeon pinched and prodded and drew his green marks on my skin. “You’ll always feel some discomfort and find some swelling when you use your right arm. That’s your new normal.” My surgeon then launched into his “everyone is asymmetrical” speech which I wasn’t sure was to make me feel better or him.

Joey later said my face screwed up, and it did. I fought back the surprise tears that reminded me of what was taken from me, the onslaught of procedures and chemo drugs that I endured. What a crazy freaking last year it has been.

I saw this early April surgery as a declaratory period at the end of a screwy sentence. Let’s fix this right breast and get feeling better, oh and while we’re at it, take out this port that I hope to never need again. Julian’s little head just bumps it all the time and it hurts to sleep on my side like I prefer to.  I wasn’t prepared for a “well that’s just the way it is now” talk. How ironic is it that most of the sensation in my breast has been taken away, but what is left is discomfort and pain. It would be preferable to be completely numb I think.

Mostly I am grateful. The breast cancer was only on one side and even though the opposite side is the breast that didn’t heal right initially, and is the one that causes the most pain, I know I made the right choice in having a bilateral mastectomy. I know that if I can help it, I would never want to go through chemo again. I know that I would be constantly worried about developing cancer again, had I left any breast tissue. This is the hard cold reality of the triple-threat of having a BRCA 1 gene mutation, triple negative cancer and family history of breast cancer. An 85% chance of a new tumor is nothing to sneeze at. Even though I am still processing great loss, even though I am uncomfortable, even though I can’t lift and stretch and use my body in all the same old ways, I am still grateful.

I am here. I have lots more to learn and experience, to do and to love and to share. You can simultaneously feel gratitude and loss, appreciation and pain. Isn’t this life so perplexing and complicated and beautiful? The early spring in the northeast reflects my inner landscape. I have weathered so much, I feel muddled and battered …but underneath, just under the dirt there… there is a feeling of renewal, of reaching for the sun.

shoots

Pick me up Mommy!

Tell a Mom not to use her right arm. Tell this to a Mom with a 4 year old and watch her face. I am one of those people who is never content to do just one thing at a time. While the onions are sauteing, I can get the laundry going, start a fire, wipe a nose, answer a text and find my husband’s wallet. I will get back just in time to perfectly translucent onions ready to proceed with dinner. Multitasking is an art.

For those of you following my journey, you may recall that soon after my double mastectomy last July, I developed an infection in my right breast. I had this major operation and was booted out of the hospital in less than 24 hours by a cold and unfeeling nurse with no real discharge instructions.  No one told me that I had to stay on antibiotics for the full length of time that I still had drains protruding from my sides. Coincidentally, the pharmacist only filled my script for a 6 day supply of antibiotics. (Never heard of that before and not sure why they didn’t give the full amount I needed.) I was suppose to have drains in for 2 weeks, but this was stretched out to 4 because of the infection. Was this an oversight by the surgeon, the hospital or the pharmacy? YES!

So, fast forward almost 8 months…. here we are. My right side is filling up with fluid and is quite painful. I saw the plastic surgeon last week and he ordered an ultrasound. The only way to fix this problem is to have another surgery to redo the breast that never healed properly. In case you are wondering how this works, the breast is recreated with a layer of Alloederm which is intended to adhere to your skin, and creates a pocket to hold the breast implant. In my case, the Alloderm didn’t properly adhere on the right side and my body is reading it as foreign material, creating all this extra fluid. Aside from the pain I look pretty lopsided, with one side looking fairly normal and the other teetering on being Pamela Anderson-esque. For the short term, the surgeon suggested I not use my right arm. Pshaw!

My second and hopefully last surgery in this breast cancer saga will be on April 8th. I am told it is way less invasive with a shorter recovery time than the mastectomy, which is great news. I also got the approval from my oncologist to have my port removed at the same time. Usually they like cancer patients to keep them in for a year after treatment, but given the particulars of my case, I’ve been given the green light. I am thrilled about this and see it as a big thumbs up to close this chapter of my life and move forward with the rest.

I know my blog has been fairly quiet, but as you see I’ve had quite a lot on my plate. In case you are wondering, I’m still writing. In fact, I am currently taking a writing class with Martha Frankel and I am starting to comb through the work I generated from this blog. Many people have suggested there is a book somewhere in here. At first mention, it was hard for me to look at this body of pain and suffering as a book that could help others. The more people began to reach out to me, the more I realized that my journey is about more than breast cancer and my particular brand of struggle. There is a unifying pulse that speaks to the human condition and our thirst for something more. I don’t know what else to say about it right now, but if I write it… will you help me share it and bring it forth to the world?

melissa n julian

Rights of the sick; Dying to Live

UPDATE, 2 weeks post surgery:

I developed a fever of 102 from an infection, and felt like crap again for a few days.

I learned that I actually had REFILLS on my antibiotics and should have remained on them for 3 weeks, not just 6 measly days. (Really wish the pharmacist or the doctors had gone over that!)

Two of the four drains were removed, so I’m less of a bulky octopus than I was before.

Steri-strips came off and I can see the incisions and what will become scars across my new breasts. It’s a very shocking thing to get use to seeing. The doctors and nurses say, “Wow, you look amazing!” What else would they say? (“You look like a hideous monster! My God, what did they do to you?!”) …be thankful, I keep telling myself.

I’m pretty sure I’m driving my husband crazy. He watches over me like a hawk to make sure I don’t do something stupid, like use my arms. Joey takes care of me, Julian and the household and manages to stay up on his Mets games and catch a few hours of sleep each day.

There is a more important story to tell though… On Friday, we had an appointment scheduled with the oncologist. This was to be our second time meeting since the first meeting shortly after diagnosis, although we had spoken on the phone a few times after that. The intention was to go over the surgical pathology report and lay out a plan for the chemotherapy treatment ahead. We were going to look at all the data, run through a computer model to see what outcomes of survival and reoccurrence would look like with or without chemotherapy and compare stats for different types of chemotherapy drugs…. or so I thought. I have been feeling very nervous about this pending appointment and starting to dread this next part of my treatment.

Here is what happened. We show up on time for a noon appointment, sit in a drabby waiting room, are asked to fill out paperwork that I had previously already filled out. OK. We are taken back into an exam room. After a nurse takes my blood pressure, and tells me the doctor will be in soon, we are left to take in our surroundings. I know after my many doctor visits, my 2nd opinion at Sloan Kettering and from my research that patients undergoing chemotherapy have zero immunity and are very vulnerable to germs. (At Sloan, even the security guards wear face masks and there is hand sanitizer everywhere!) What we saw was appalling. There was a thick layer of dust on things, dirty walls with bad dry wall patches, dried blood on the floor, and stuffing sticking out of the exam table upholstery which had no paper on it. We waited for a half hour and finally some random Dr. came in and tried to begin the appointment and I had to explain that the visit was scheduled with MY oncologist, who knows my case. A total of 90 minutes later, we start to walk out of the room. Enough is enough… and here comes MY doctor, ready to see me. She apologizes for the delay, but after she thumbs through my folder and tells me she doesn’t have the pathology report, we head for the door. I had called her office one week prior and earlier that same morning to make sure that they had obtained the report. Are you kidding me!? The hallway of this place was lined with people who looked like they were dying, lying on cots for us to see as we walk out. I felt so sick to my stomach. This is a place where people come to die.

Moral of the story… Do not feel bullied or pressured to be polite and quietly suffer in a place that does not feel safe and respectful of your rights as a patient and a human. Do not settle. Ask questions. Ask for help. Bring someone with you if you are not well enough or confident enough to advocate for yourself.

Now, I am armed with a long list of approved oncologists in my network and I know I’ll find a better fit to round out this leg of my treatment. Onward!