The call came on a Tuesday. The call I’d been expecting. The call that would deliver the results of my breast biopsy. I wasn’t worried. Despite the fact that two of my sisters had previously been diagnosed with breast cancer. … Read the rest →]]>

The call came on a Tuesday. The call I’d been expecting. The call that would deliver the results of my breast biopsy. I wasn’t worried. Despite the fact that two of my sisters had previously been diagnosed with breast cancer. For some reason, I didn’t feel it was in the cards for me.

“What will you do if the results come back positive?” my husband asked over breakfast the previous Friday, just after the biopsy.

I shrugged. “That’s a no brainer. I’ll tell them to take ‘em both.”

I’d just pulled into the parking lot at work when my doctor called with the results. “No cancer,” she said.

“Great,” I replied, not surprised by the results.

“However, they did find some atypical cells. I’m afraid you have another surgery in your future. A lumpectomy, at a minimum. Unless you choose to have a mastectomy.”

My heart leapt into my throat. “Whoa, wait a minute. Mastectomy? Just what exactly are you saying?”

“You have a condition called Atypical Lobular Hyperplasia…”

ALH is a pre-cancerous condition in the milk lobes of the breast which may, or may not, become cancerous. The more risk factors you have, the greater your chances that it will develop into cancer. My doctor pointed out that with two direct relatives who have had breast cancer, along with several other factors, my odds of getting breast cancer were pretty high.

Suddenly, my mind was a whirl of choices, none of which seemed like the right choice. Still in a daze from the news but determined to gather as much information as possible before I made my decision, I went to see a series of doctors.

The Decision:

The first stop was a breast surgeon. I thought I was going to discuss all of my options, but as it turned out, I was there to discuss a lumpectomy (the removal of the tissue surrounding the affected area—which had been marked with a dot during biopsy).

Pros: A lumpectomy might remove all the affected cells.

Cons: It might not remove all the affected cells, which would require further surgery.

My second visit was to an oncologist, where we discussed the use of Tamoxifen (an oral chemo drug) to stop the spread of the ALH.

Pros: It is a non-surgical (non-invasive) way to treat the condition.

Cons: Tamoxifen has many unwanted side-effects, not the least of which is instant menopause (may be temporary or permanent).

My third stop was to another breast surgeon to discuss preventive mastectomy. Dr. Nima Grissom explained to me that, because ALH is contained within the lobes (or the ducts in the case of atypical ductal hyperplasia) it is difficult to detect because it doesn’t show up on imaging until it has progressed to invasive cancer. Mine was detected because they were testing a suspicious calcification (which was fine) and just happened to capture some atypical cells surrounding it. Which is why doing nothing was not an option for me.

Pros: It would provide a total cure (assuming they didn’t find any actual cancer in the pathology).

Cons: It’s major surgery.

My final stop was to a genetic counselor to discuss my family history and to better quantify my chances of someday getting breast cancer. The genetic counselor took a detailed family history and explained that, even though my sisters both tested negative on the genetic testing, it was very possible that their cancer was in fact genetic, that geneticists can only test the genes that they know today are linked to breast cancer (and that there are very likely many more yet to be discovered).

The bottom line from the genetic counselor: my chances of getting breast cancer at some point in my life were very high, likely greater than 60%.

This begged the question: If I knew that the plane I was boarding had a 60% chance of crashing, would I get on it?

Answer? No. I chose bilateral mastectomy.

What to Expect After Mastectomy:

Mastectomy is not for everyone. One of my sisters chose it, the other did not. It’s a very personal decision that should not be made lightly. Even given my odds, it was not a no-brainer. And even after I made it, I wondered if it was the right one.

What if, I asked myself, the pathology report came back and the only thing they found was that tiny bit of ALH from the original biopsy? It’s not that I wanted them to find something more, but could I justify removing both of my breasts for such a minute amount of pre-cancer?

Answer? Yes, because I did not want to live with the fear of wondering if that tiny little spot would turn into something more. I also knew that there was a distinct possibility that it might’ve already turned into something more.

And so, one year ago today, I underwent a bilateral nipple-sparing mastectomy. A few days later, the pathology revealed extensive amounts of bilateral carcinoma in-situ. Cancer that is contained within the ducts or lobes. That tiny spot had indeed grown into something more.

Things the Doctors Don’t Tell you about Mastectomy:

The Pain:
It hurts. Like hell. But I have a high tolerance for pain and this didn’t bother me. Too much.

The Numbness:
After a mastectomy, you lose all sensation in your breasts. Getting used to the numbness takes time.

The Complications:
My friend Susie Lindau (to read her Boob Report, click here) underwent a bilateral mastectomy five weeks before I did. She sailed through with only one minor complication.

Five weeks after my mastectomy, I had a second surgery to remove a patch of skin that died. The surgery itself was easy (compared to the first one), but because of this condition, I had to take antibiotics for six weeks, which made me pretty sick.

And now, six months after my reconstructive surgery, I’ll have a fourth surgery to remove a capsular contracture.

The Emotional Toll:
This by far has been the hardest part for me. A few weeks after the mastectomy I began crying for no discernable reason. And I couldn’t stop. Medication helped, but for a long time, no matter how hard I tried, I could not summon the joy I used to feel every day of my life. But time heals all. A year later I’m finally beginning to feel like myself again.

Someone asked me recently if, knowing everything I know today, I would still make the same decision.

Answer? Yes. I have no regrets. It’s been a long journey—and it’s not over yet—but I’ve learned a lot about myself this past year. I’ve learned that I am stronger than I thought I was (my surgeon, Dr. Gabriel Kind, calls me “one tough Chicago chick”), and that it’s okay to vulnerable (and to ask for help).

Oh, and because getting pissed off is sometimes the only thing that feels good, I’ve learned to embrace my inner bitch.

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For the past couple of weeks I’ve been feeling blue. Tears seem to come from nowhere at random times with no understanding of their purpose. I mean, sure, I had a bilateral mastectomy six weeks … Read the rest →]]> Photo Courtesy of Google Images

For the past couple of weeks I’ve been feeling blue. Tears seem to come from nowhere at random times with no understanding of their purpose. I mean, sure, I had a bilateral mastectomy six weeks ago, but I’m through the worst now.

So what the hell is going on?

And then yesterday, my sister Pamela called when I was feeling particularly blue. She asked what was wrong and I told her I didn’t know. I just seem to cry with no particular reason in mind. The conversation went like this:

Her: “You have a right to feel blue, or any other color you feel like being. Hell, you have the right to be angry, pissed off even, at the hand fate has dealt you. Nobody should have to be faced with a choice between losing their breasts and all the other stuff that goes along with it (like skin necrosis, fevers, intestinal issues, pulled ribs, pulled muscles, the pain of the drains, and just lots of pain in general), or risk losing their life. You had breast cancer, Sister. You’re a Survivor now.”

Me: “I don’t feel like a Survivor. I feel like a fraud. I mean, I didn’t even have ‘real’ cancer. I didn’t earn the right to call myself a Survivor.”

Her: “You had the same kind of cancer as Diane (our other sister). Carcinoma in Situ is cancer contained in the lobe or duct. It’s Non-Invasive breast cancer but it is cancer, and you ARE a Survivor. With the amount of cancer you had, you for sure saved your life by having this surgery. You need to allow yourself to grieve for what you’ve lost and what you’ve been through. Don’t try to busy the feelings away. Let them heal you.”

And so I cry, and still, I can’t help it, the feeling that I have no right to these feelings comes creeping back. And then the realization strikes like midnight. You see, a few weeks ago I learned that one of my sisters, due to complications from spinal surgery, will spend the rest of her life in a wheelchair, has a pacemaker to control her heartbeat, and will likely never hear the sound of her own voice again (commences crying). Her situation is permanent. Mine will be over in a few months when I have my final surgery.

And then I repeat Pamela’s words back to myself and I realize that, even though I am devastated and broken-hearted for my sister, I have the right to feel whatever I need to feel about my own situation. And so this time when I cry, I no longer feel like a fraud. I feel like a woman who has been through a long, hard journey but has found the courage to get through it (with the ever-present support of my husband, my sisters and my friends). I feel like a Survivor.

The very next day I went to Physical Therapy for the first time. In filling out the questionnaire, I was asked if I’ve ever had cancer and I checked the box with a Yes (and wrote “breast” next to it). When speaking to my therapist she asked what Stage my cancer was. I blinked a couple of times and said, “Zero. You see I had the kind of cancer that is considered non-invasive, so they call it Stage Zero.”  The therapist smiles at me and says, “My mother had Stage Zero breast cancer a few years ago and she had a bilateral mastectomy, too. What a brave decision you made.”

And she’s right. It was brave, and I am strong, and I will honor my feelings and then I’ll let them go because I am a Survivor.

Repost from September 17, 2013.

Last night I was scrolling through the pictures on my phone and came upon this one of my sister Pamela and I outside the front of my house in our bathrobes. I wracked my still anesthesia-fogged brain trying … Read the rest →]]> Flashbacks

Last night I was scrolling through the pictures on my phone and came upon this one of my sister Pamela and I outside the front of my house in our bathrobes. I wracked my still anesthesia-fogged brain trying to remember when this photo was taken and only by looking at the sequence of photos taken before and after this one did a vague recollection dawn.

It was my first full day home from the hospital (three days post-op) and we actually walked around the block (or probably just to the corner and back). In our pajamas. And our bathrobes. I can’t even begin to imagine what the neighbors thought. Well, at least we looked cute.

Dr. Evil Returns

On day 6 post-surgery, I was awakened by the barking of my neighbor’s dog at around 8:00 in the morning. Not a big deal except that the dog would not stop barking. It barked and barked and barked, and by 3:00 in the afternoon I could stand it no more.

Exhausted and weary from the frayed nerves (did I mention that the neighbor’s dog barking made my own two dogs bark non-stop?) I stomped out of bed, jotted a quick and not so nice note threatening to report the dog to animal control if they couldn’t control it’s barking, and marched myself over there (wearing god only knows what). When nobody answered I slapped the note (with tape I had already applied) on the door and strode home, collapsing back into bed.

The next morning, completely devoid of any memory from the previous day’s escapade, my husband strolls into the bedroom and hands me a piece of paper. I eyed him suspiciously and slowly opened the note. It began like this:

Dear Neighbor:

First, let me wish you a speedy and healthy recovery from your surgery (apparently I mentioned this in my note). Second, I understand how difficult it can be to rest with a barking dog nearby. Please do not call animal control. We want to work to resolve this. I will keep Brodie in his crate inside all day today so he will not disturb you. Here is my phone number if Brodie’s barking ever becomes a problem.

Signed,
Ridiculously Nice Neighbor

When I finished reading it, a crushing blow of guilt and remorse struck me in the solar plexis. The first thing I did was to send off a quick email to my friend Susie Lindau who had her mastectomy a couple of months before me, and asked her how long I could blame my bad behavior on the narcotics and anesthesia. She quickly replied, “At least three weeks–and milk it, honey.”

I thanked her profusely, but strangely I didn’t feel the relief I expected to because the note was something that the Real Me would never do. It was then that I realized that, despite the fact that I had just slayed the Zombie’s that had invaded my dreams since surgery, the Evil Me (See Who Are You and What Have You Done with the Real Me) had returned.

Determined to not let Dr. Evil stake his claim on me, I sent off an email to my neighbor (she left her email address in her note) and explained to her that I had been momentarily possessed by an evil force and begged for her forgiveness.

I waited on pins and needles for two days for her reply and was pleased when the first line read that I had nothing to apologize for. I can’t remember what she said after that, but I made my husband promise not to let me stomp out of the house in anger ever again.

Back in the Saddle O.R. Again

In my last Post-Mastectomy blog (click here), I reported that Dr. Kind discovered a patch of skin that looked as though it might be dying. Despite our best efforts to encourage it to live, it did in fact die, and now it has to be removed. This Thursday I will return to the operating room to have the offensive tissue excised. Unfortunately, this will set my reconstruction back a couple of months, but Dr. Kind still promises me a pair of perfectly matched sisters when it’s all said and done.

What about you? What helps you through the challenges in your life?

Repost from August 27, 2013

The Diagnosis

Back in April I was diagnosed with a pre-cancer condition called Atypical Lobular Hyperplasia (see Russian Roulette or Mastectomy) and, because of a strong family history of breast cancer, decided to have a preventive bilateral mastectomy.

The decision was … Read the rest →]]>

The Diagnosis

Back in April I was diagnosed with a pre-cancer condition called Atypical Lobular Hyperplasia (see Russian Roulette or Mastectomy) and, because of a strong family history of breast cancer, decided to have a preventive bilateral mastectomy.

The decision was a difficult one, in part because I wondered how I would feel if the post-surgery pathology report came back showing no further instances of this pre-cancer condition. Would I feel as though I’d made the wrong decision? I mean, it is a pretty very extreme surgery and the pre-cancer I had might never turn into cancer.

In the end my two sisters who are survivors convinced me that, regardless of the outcome, I was making the right decision. By having a mastectomy, I would be eliminating my lifetime risk of getting breast cancer. No more six-month mammograms. No more breast MRI’s.

No more worrying.

And then last Monday my breast surgeon called me with the results of the pathology. I held my breath and awaited the verdict, determined that I would be fine with whatever the results were. “We found several more instances of the atypical lobular hyperplasia,” she said, “and extensive amount of ductal carcinoma in situ in both breasts. The good news is that because the cancer was contained inside the milk ducts (has not yet penetrated the breast tissue or lymph nodes), your surgery would be considered a total cure.”

Diagnosis and cure all at once. Cancer and the cure. I had breast cancer but now I’m cured.

I had breast cancer.

Surprisingly, that news threw me for a loop, and I’m still trying to process it. The scariest part?

Why wasn’t it seen on imaging?

Necrosis

Meanwhile, as I continue to absorb my diagnosis, I have a new complication to deal with. A visit to my reconstructive surgeon last week revealed a good-sized section of skin on my left breast that appears to be dying. Apparently this happens when the surgeon cuts too close to the skin and leaves it too thin to survive.

But for now it’s a wait-and-see game. This week I will apply an antibiotic ointment used on 3^rd degree burn victims to the area and when my doctor returns from vacation next week, we’ll decide if another surgery is in order to remove the affected area.

There WILL be Unicorns

The good news is that I have received not one but two unicorns to help me heal, and since I already have two fluffy kittens, I think I’m all set. Now it’s time to just lie back, watch some Downtown Abbey and try to stay away from all the baked goods my sister left behind from her stay while my body continues to heal.

Thank you to all of you who have left encouraging messages over the past couple of weeks. I can’t begin to tell you how much they’ve meant.  I’m hoping in the next week or so I’ll feel up to responding to your comments once again.

Reposted from August 13, 2013.