Discussing Breast Cancer

These last few days, the weather has been fantastic in the Northeast. Fantastic. Beautifully sunny, barely a cloud in the sky, a topaz blue sky.

This morning the temperature was a lovely 68 degrees. Before I’d taken my first sip of coffee, I was standing in the living room, having just opened the sides of the bay window to let in the fresh air, and a wonderful breeze wrapped itself around me.

I shivered and crossed my arms because I felt the chill take hold of my chest. My breasts, slowly regaining feeling as new nerve endings extend where old ones were removed, prickled in the cool morning air. With a lift of my shoulders I acknowledged that my nipples were getting hard then I realized … I don’t have nipples.

It must have been a phantom sensation but it was as real to me as a kiss on my cheek.

I smiled at the reality and walked away from the window thinking … who needs nipples when memories of having them are strong enough to fuel my imagination?

The last thing I shared about my personal experience was that time period immediately post-op: the pain, the immobility and the fear that I’d never recover.

The hospital staff (doctors, nurses, all of them) consistently told me the first 24 hours were the worst and each day would be better than the next. I was anxiously awaiting the time when I’d notice things were improving. Instead, I felt worse, because I started to feel feverish. You know how you can tell when your temperature isn’t normal? I couldn’t move but I certainly could distinguish between malaise and discomfort and fever and illness.

So when a nurse came in to take my vitals, I told her I was sure I had a fever, and I was right. 102 degrees. So then not only did my body hurt like hell but my head and my eyes hurt like hell as well.

I was still a bit loopy from all the morphine but unsure how to better manage the pain I was in. Someone from ‘pain management’ asked me what my pain goal was on a scale of 1-10 and I couldn’t believe the question. Hello? ZERO please! I was still in the double digits on that one and the pain was just compounded by the fever I’d developed.

It was worse than being between a rock and a hard place. It was like being between a rock and a hard place and the two sides started to push in one you so you can’t get out.

And of course, I just wanted to see my kids … and I knew I couldn’t because I didn’t want them to see me like that. I missed them some thing fierce. But to take away their fear, I had to be in decent shape when they came to see me, and that wouldn’t be for days.

Over the course of that first weekend, my mother and father visited me, my mother and father in law visited me, my two sisters visited me, and of course my husband was with me almost continuously. (One of these days I’ll share his point of view about the entire experience.) But I wanted no other visitors — so much for the plans my friends had to come and cheer me up.

Gradually the pain did diminish — I switched from morphine to codeine to Percocet to Tylenol.

Gradually the fever did go down — honestly, I don’t remember what caused secondary infection caused that one.

So plans were made for my kids to come and visit.

It’s hard to describe the pain I felt when I became coherent after my surgery (my double mastectomy/reconstruction surgery, for those who are just joining the conversation).

Even the slightest movement pained me. The slightest movement, like breathing.

I was eventually wheeled up to a private room on a floor reserved for women — I didn’t realize the gift that was in the long run. At the time, I was so confused. Why I didn’t have people looking after me and caring for my every need and whim. Honestly, I felt discarded. I was so immobile, so vulnerable, so afraid.

I was afraid the pain would never subside, afraid my blood would clot, afraid an infection would start, afraid I’d never heal, never move again. Afraid …

Well, afraid I’d die from the pain.

Then I realized they weren’t giving me any pain medication yet.

NOTHING.

If I was to advocate for a change in anything related to surgery it would be that transition time between surgery and recovery that are so frightening for the patient. Frightening because nobody is truly in charge anymore. In the OR there are loads of people who know what they are doing. Once you are settled in your room afterwards there is a nursing staff who knows what they are doing. But the transition between the two places needs serious improvement. At least the day of my surgery it did.

I guess there were still pain meds in my system from the OR and that needed to run its course. Whatever, the whole experience had me upset, my husband nearly frantic (his feelings of helpless and lack of control are tabled for a post for another day).

So they get the morphine drip hooked up and things became more manageable. Not the pain, mind you, but the anxiety.

Until my husband finally goes home around midnight (we did have kids desperate to see him in the morning to find out how mommy was remember, their needs came before mine). But that’s when the morphine pump goes empty and the horrible beeping started.

And I couldn’t move.

And it took twenty minutes for a nurse to finally respond to my call.

I suppose that would be another area that needs improvement … that middle of the night nonsense. They come in, they take your vitals, draw blood, all this stuff that wakes you up yet when you need them, they’re nowhere to be found.

I was such a wreck, crying, complaining. I just wanted someone to make the whole thing better for me. But all they did was tell me I’d feel better the following day. So I was anxious for that, anxious to start to feel a difference.

But that difference never came. By morning I was running a temperature of over 102. Something was wrong.

Breast Cancer, Surgery, Mastectomy

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Back to Tuesday, May 2nd.

I don’t remember much of my pre-op experience. The anesthesiologist told me he was going to give me something to help me relax before they put me to sleep. I hadn’t stopped crying since I said ‘goodbye’ to my husband and I’m sure they needed me to knock that off.

The meds were was effective, so they said. I personally don’t recall much. Did you know they also give you something via IV that makes you forget those pre-surgical moments?

Seriously … I remember getting on the table, hearing the anesthesiologist explain he was going to give me something to relax … then the next thing I remember is coming out of this dream, begging them not to wake me up, telling them I wasn’t ready, then feeling this horrible scraping in my throat, like they were pulling my guts up through my esophagus. I wanted to wretch but was not yet able to move. I realized after two other surgeries that I’d been intubated and they had to pull that tube out. I also realized it would be a while before the messages I heard in my brain were actually communicated to the rest of my body.

Things happen very quickly post-op. While still in a fog I was wheeled to a recovery area. I still couldn’t move, I thought at first that was medication related. I didn’t realize it was also self-preservation; even the slightest movement would cause such tremendous pain that my brain wouldn’t allow it.

I could barely open my eyes. They were dried out after being closed for so long. I needed Visine. My own was on my bedside table, had been ever since the Tamoxifen started causing my eyes to dry out each night. Now I just had to explain that to someone and that was challenging.

My husband was by my side almost immediately. I later found out my sense of time was way off (yours would be too if you were operated on for so many hours) and I’d actually been in and out of sleep post-op for quite a while before he was allowed to see me.

He scrambled to try to get me Visine but it wasn’t easy without leaving my side. My best friend had some in her purse, but she wasn’t allowed in to see me, and he was hesitant to leave me.

I was doing “as expected” according to the medical staff, but my husband says I was in horrible shape. Of course, he was emotionally wrought after such a long day in the waiting room. And I … I kept saying I seriously felt as if I’d been hit by a train. (I know, it’s cliche — it was all I could muster up under the circumstances. Now, all the times I’d said that exact phrase seemed ridiculously over exaggerated. This was the real deal. I felt as though I was hit by an Amtrak Acela that didn’t slow down for a minute before smashing my unexpecting body into bits.)

I’d later hear from my surgeon that if train wreck victims could be so lucky they’d come out like me. But I was thinking the ones that died? They got the better end of the deal. They didn’t have to experience this type of excruciating pain any longer.

Breast Cancer, Surgery, Mastectomy

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My husband and I arrived at Yale just past dawn on Tuesday morning, May 2nd, 2006. We pulled into the valet parking circle and I couldn’t help but think it would have been so much nicer if we were arriving at a fancy restaurant for brunch instead of the hospital where both my breasts were being removed.

First, we headed to the admission office. Just days before I’d been there for pre-op testing. Now it was time for the real deal. My leaded heart hurt just as much as my caffeine-deprived head.

After we’d check int, we headed upstairs to the surgical floor. We were guided to my cubicle, passing family after family in their own personal cubicles, and I was given a gown to change into. With the curtain pulled closed, I stripped off my clothes, the last bit of comfort I’d feel for days, and sat barely covered in the wanna be lounge chair they provided.

The first thing the nurse noticed when she walked in to check on me was that I still wore my wedding ring. I was purposeful about that, having left off all other jewelry, but my wedding band … “that has to come off,” she said.

That was when the tears started. I handed the ring to my husband and noticed he was filled to the brim with tears as he took them from my shaking hand.

They provided blankets to keep my body as warm as possible as they prepped me for surgery. There were residents with clipboards and nurses with notebooks coming in and out of the cubicle and everyone was checking things off and writing things down and all I wanted to do was sit there quietly with the man I loved.

Then the anesthesiologist came in to start my IV. He was very kind, very warm, and in a way, I wished he’d been as cold and clinical as the minions that had been there before him. His bedside manner made me feel human and important and that opened up the floodgates of fear and anxiety that I’d been working so hard to contain. I nearly exploded with pre-op emotion and adrenalin.

When it was time to get me to the OR he allowed me to sit in a chair instead of lying down on a gurney so that I could see where we were going. My husband held my hand and walked beside me for as long as he could … then the anesthesiologist showed him the waiting room and we had to quickly say goodbye.

I really wish he could have come to that room with me.

Breast Cancer, Double Mastectomy, Surgery, Reconstruction

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My parents showed up at the house early so we didn’t have to wake the kids. All three were still asleep in their beds as my husband and I got ourselves ready. I took a shower, the last one I’d take for weeks. I didn’t put on jewelry or make up but I did put on my most comfortable sweats.

I explained to my mom that my oldest needed a snack and a drink and lunch and a drink and my middle child needed a snack and a drink for preschool. I explained that I usually let them choose what they wanted for breakfast; easy on the syrup if they chose waffles, no chocolate milk if they chose a kids cereal.

I explained to my dad the drop off and pick up procedures at the elementary school and the preschool.

I explained my youngest child’s nap time schedule and strategy.

And I cried. I didn’t want to walk out the door. I knew I’d be in the hospital for days, not because of the double mastectomy but because of the reconstruction. The TRAM flap was a huge surgery that warranted a possible five day hospital stay.

I was going to miss my babies. I knew they were going to miss me.

I left a white index card on each child’s pillow with a few easy to read words to express how I love them (so much) and how I’d miss them (so much). I signed it with a lipstick kiss. Long lasting color.

That lipstick is still on those cards still in their dresser drawers one year later.

I couldn’t have coffee so my head started to hurt as much as my heart as my husband pulled out of the driveway and began the half hour drive to Yale.

Breast Cancer, Double Mastectomy, Surgery, Reconstruction

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Alright, let me bring the new readers up to speed since my story is taking months to tell (truth be told, I purposely digress at times).

I was initially diagnosed with DCIS (ductal carcinoma in situ) in July of 2003 at the age of 35; I had a partial mastectomy and radiation therapy then went on Tamoxifen and was supposed to stay cancer free.

I was diagnosed with Stage 1 IDC (invasive ductal carcinoma) in April 2006 at the age of 38; I chose to have a double mastectomy and wanted immediate reconstruction. Having had radiation therapy before, implants weren’t my best reconstruction option, so I decided on a pedicled TRAM flap. My plastic surgeon, Dr. Narayan, explained how he’d take my abdominal fat and muscles and move them to my chest. If you’re a skinny minis, you wouldn’t have enough to work with, but apparently I hadn’t dedicated my breakfast time to Special K. Dr. Narayan could certainly pinch an inch and actually, he could pinch 3 inches. In each hand.

“What is your cup size,” Dr. Narayan asked me.

“I’m a ‘C’ cup,” I replied.

“Hop on,” he said as he patted the exam room table. I climbed up, lied down, Dr. Narayan lifted my gown to expose my stomach and literally grabbed my two handfuls of my belly then said, “yes, you’ll have enough.”

I’d never felt so glad I had some belly fat.

Then the real kicker.

“Did you ever smoke?” he asked.

“Socially,” I replied. “In college.”

Then the disapproving look. Apparently when you combine even limited cigarette use with previous radiation therapy you’re at risk for TRAM flap failure. Who knew?

So Dr. Narayan wanted to do a preliminary procedure to ready the tissue for the surgery, to improve the blood supply to the area. He called it a delay procedure (don’t let the name fool you, it happens before the reconstruction). The delay procedure was an ambulatory surgery. It was supposed to be a piece of cake. In and out. No big deal.

No big deal???? HA!

Dr. Narayan sliced a six inch piece of my abdominal pie then the nice nurses at the Temple Surgical Center sent me home. Goodbye!

I couldn’t walk. I could barely sit. I couldn’t believe it. I had an incision in my abdomen as big as those my friends had gotten when they had C-sections and I thought I was going to walk out of there and resume life as normal. Holy crap, talk about underestimating ambulatory surgery.

It was ten days prior to my mastectomy. I was supposed to have those ten days to get myself mentally prepared for ‘the big day.’ Instead, I had ten days to freak out because I was so incredibly unprepared for my delay procedure.

Of course, just when I started to get better … I was headed to the OR again.

Breast Cancer, Mastectomy, Reconstruction, Surgery, TRAM flap

I realize I have to write this post before I tell you about my mastectomy surgery. It’s the post about my reconstruction decision.

See, after you decide what cancer-eliminating surgery to get, you have to decide what reconstructive surgery to get, and there are a lot of options.

Quite frankly, not reconstructing was not an option for me. I wanted a shape after my surgery. I wanted breasts. I LOVED my breasts, not something I’ve talked about much before, but trust me, I LOVED them.

I remember my first pink silk Sassoon training bra (remember the tagline, “OOohh La La Sassoon” and the little ‘okay’ symbol on the tag? No? Well I do. Clearly.) I was too young for breasts but not at all too young for the fantastic pink silk training bra my mother bought me.

I remember the first time my newly developed breasts were noticed. I was walking from one building to another on the first day of my senior year in high school — I was a September baby so I was not even 17 — and Gerald, the president of the student council, stopped me with a ‘WOW,’ reaction because apparently I’d developed over summer vacation. I may not remember actually developing, but do remember that first day of school my senior year.

I remember the competition that the guys on my floor freshman year in college introduced between my roommate and I: whose were bigger? People actually walked by our door and voted on our memo board and we didn’t complain (actually, the tally was right on our door … how could we have allowed such graffiti to take place?). My roommate won, eventually, and if you saw her now you’d never even imagine I could be in her league.

I remember the day the boys who lived across the hall from us named my breasts after themselves because they liked them so much. Stephen claimed the one on the left, the sweet, quiet breast that was always in the shadow of the other. The one on the right became Andrew, the slightly bigger of the two, slightly rounder and ironically the one to cause me trouble one day.

I remember that same year when Craig, a fraternity brother at the beloved Phi Delt, nicknamed me ‘Cleavage’ because he said when he looked at me, that was all he saw. Actually, I remember the v-neck white t-shirt I was wearing when he nicknamed me and the exact party we were at … the FIJI paint party … amazing what neon paints can do to a white t-shirt in a neon light in a fraternity bar room.

I also remember breastfeeding my two sons, using my breasts the way that God intended me to use them for, and I remember the peaceful feeling that gave me, the nourishment that gave them, the overwhelming feeling of togetherness that gave each of us.

Yes … I loved my breasts and the identify they gave me. They weren’t being taken from me completely.

It wasn’t even that hard to choose an option b/c I’d already had radiation therapy to one side … the plastic surgeon recommended a pedicled TRAM flap and I said yes.

Little did I know how complicated that surgery would actually be for me.

Breast Cancer, Health and Wellness, Mastectomy, Reconstruction, Surgery, Women’s Health

The more I blog about breast cancer, the more I realize it is easier to share information about breast cancer related studies and products or services than it is to write about topics that are painful to revisit.

Some aspects of my journey have been easy to share … like my first cancer diagnosis in 2003. That was DCIS, easily treatable with a protocol treatment plan. Kind of a no-brainer. Not that it wasn’t hard in many, many ways. But looking back, it was manageable, and not so hard to write about.

I’ve shared a few posts (like with this one) about my recurrence, my IDC diagnosis last Spring and the decision I had to make related to my mastectomy surgery.

Those posts were harder to write.

I have yet to tell you the details of that surgery … that’s the seriously hard stuff to revisit. Rock hard. Cement hard. Concrete hard. (Wait, which is harder, cement or concrete? It’s as hard as that.)

That stuff is coming up next. I’m sorry I’ve been putting it off. I didn’t even journal my way through last year. A therapist would have a field day with that.

Today I’m headed to Yale for a follow up with Dr. Lannin, the surgeon that removed both my breasts. I thought perhaps that was my sign that it was time I shared what my double mastectomy was like.

So that’s what I’m going to do.

Tomorrow.

Since cancer had come back in my right breast after surgery and radiation and hormone therapy … it was clear that my right breast needed to come off. Apparently it wasn’t just prone to developing cancer cells, it enjoyed growing them, and was good at it. That made at least a single mastectomy a must in everyone’s eyes. I couldn’t help but chant in my head … “we must, we must, we must remove my breast.”

Even though my left breast wasn’t involved with my breast cancer recurrence, I had the option of removing it. It was considered a perfectly reasonable option. An option. That meant I had a choice to make.

My husband had no doubt in his mind that a double mastectomy was the way to go. He didn’t want to ever, ever go through the stress of a diagnosis again. “Why wait to find out that the cancer was back a third time in your left breast,” he voiced to me when I found myself in a quandary.

I, on the other hand, could have been talked out of a double mastectomy. I was still in a bit of denial. I really didn’t like the idea of unnecessary surgery and I wasn’t sure it was necessary to get rid of both breasts. Sometimes I wasn’t sure the pathology was right. I often found myself imagining the results had been switched ’soap opera style’ and I never even had breast cancer in the first place let alone a second bout of it.

But I was at high risk for developing breast cancer in my left breast since my right breast and I had a personal history with the disease. I read the results of a great study posted on breastcancer.org about just this decision. In a moment of clarity and reflection on how hard my diagnoses were on my family, I realized it was the right choice for me to try to make sure we were never, ever in this situation again.

And that meant … a double mastectomy.

On Monday, April 3rd, 2006, I headed to Yale for another Stereotactic Core Needle Biopsy of my right breast tissue. The same breast that was surgically treated then radiated not three years prior. (Persistent little buggers, aren’t they, those cancer cells?)

In an earlier post, I explained my first biopsy so I’ve no need to bore you with the details in this one. The only difference between my first biopsy and this one was (1) the location (Norwalk Hospital vs. Yale) and (2) the fact that I’d already had bad news once so I no longer lived in denial, I no longer felt it couldn’t happen to me, and as a result I was an emotional wreck.

Fortunately, a nurse practitioner from my surgeon’s office joined the crew of technicians and stood next to me speaking to me with a soothing voice and rubbing my back the entire time. Seriously, that’s what she did, and it made a difference. I felt cared for, and safe, and though I was scared, I knew I’d be alright even if it proved to be cancer again. And it did. I had a breast cancer recurrence.

A few days later I got the call from Elspeth Knill-Selby, A.P.N., Affiliated, Surgery. Invasive Ductal Carcinoma and DCIS cells were found in the tissue sample. Most likely it was still caught early (Stage 1), but we’d need full pathology done to confirm that diagnosis. Pathology that would be completed after a mastectomy and a sentinel node biopsy.

All that information was given to me over the phone. Now some people don’t like getting information like that over the phone. But in my case, honestly, I’m so busy with my kids and I have a strong relationship with Elspeth. So I didn’t mind that aspect of the diagnosis at all.

What I did mind was that I was facing some hard decisions: a single mastectomy of the involved breast, a double mastectomy, reconstruction and if yes, what kind.

Let’s go back to 2003 … after my partial mastectomy and radiation therapy I was considered cancer free. The question on the table was would I be able to stay that way?

I was 36 years old. The pathology from my surgery determined my cancer cells were estrogen receptive (ER+). I hadn’t started menopause which meant I had a good amount of estrogen running throughout my body. I had a choice to make: do nothing or start hormone therapy, another adjuvant therapy, and that meant taking Tamoxifen.

Now Tamoxifen was supposed to be a pretty great drug (the FDA touted its benefits when it approved it back in 1998). I was told it would prevent whatever cancer cells I might have had left in my breast from feeding on the estrogen my body produced. I was told it would reduce my risk of recurrence by around 50%.

I was told that my risk of recurrence within five years was maybe around 10%. Taking Tamoxifen would take that number down to around 5%. I liked the lower number, that’s for sure.

Of course, there were some side effects to consider — mostly menopausal symptoms like hot flashes and vaginal dryness — also some risks: blood clots and endometrial cancer.

My oncologist felt the benefits far outweighed the risks. When asked point blank if she would take it if she were me she said, ‘yes.’

There was one potentially big problem, however, from where she stood. If my husband and I wanted a third biological child she could not ethically prescribe the drug for me because it could cause fetal harm were I to conceive while taking it. If we were done having kids, however, she’d write the script that day.

My husband and I looked at each other and smiled. No, we weren’t done having children. Yes, we wanted a third child. But we agreed immediately that she should write the prescription. See, we knew that God’s plan for our lives was to bless us with a third child, a little girl, whose biological parents in China could not raise her. We knew we’d adopt child number three so taking Tamoxifen was not going to be an issue in that regard.

I started taking Tamoxifen the week after my radiation therapy had ended. I experienced no side effects at all while taking the drug. But there was one big problem. Tamoxifen was supposed to keep me cancer free. Remember the numbers? It was supposed to reduce my risk of recurrence by about 50%. It was supposed to bring my personal risk of recurrence within five years from 10% down to 5%.

The cancer cells in my body didn’t listen to the numbers that day in my oncologist’s office. They had their own plan and it didn’t involve me staying cancer free for long.

The morning of August 18th, my husband and I headed up to Yale first thing in the morning. The kids were at my mom’s so we didn’t have to worry about them, all we had to do was figure out what to listen to on the radio during the 1/2 hour car ride.

Our first stop at Yale was mammography; I know, I’d already been there, done that. But the surgery I was to have required one additional step: wire localization. Basically, the radiologist in mammography would insert a wire into my breast as a guide for my surgeon in the OR — he’d know exactly where the malignancy was and could be more precise in his surgical efforts.

Of course, I was awake for that, then had to be wheeled to the hospital OR with a wire sticking out of my body. Not very pleasant!

In the OR, I was given drugs to relax me … I was sort of asleep for the procedure but also sort of awake, and though I felt nothing, I was aware of what they were doing. I even heard the surgeon on the phone with pathology confirming that the margins looked good.

As I was coming out of that groggy place, I heard the doctor explaining the procedure to the nurse that was tending to me. I saw my husband, smiling, relieved it was over. Very little time passed and I was able to go home that day. The incision healed quickly, and though I was to baby it for a while, I hardly had any restrictions. It was nothing … kind of odd, actually. It sounded so much worse than it was.

When the pathology came back, it confirmed that I had Grade 2 DCIS but indeed, the margins looked clear, which meant I didn’t need a follow up surgery and wouldn’t require chemotherapy. It was a huge success, a huge relief. At that point, I was left with just one question: would I be starting radiation therapy before my son’s 4th birthday on September 15th or before I turned 36 on September 18th.