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21 Days Post-Op: My Journey to Prevent Ovarian Cancer

I am no longer a surgical patient.

Just three weeks after my hysterectomy and surgery to remove my ovaries, my doctor has cleared me to take back my life. He said I am healing perfectly and I can even resume exercising. I don’t have to go back to his office again until my next regular gynecological exam  in six months. And, here’s the most exciting part: my days of routine blood tests and radiological screenings to detect ovarian cancer are over. Done.

Ever since I tested positive for BRCA1 four years ago (and to be honest, ever since my mother died of ovarian cancer seven years before that) I have been seeing a team of cancer-prevention specialists. I’ve been getting CA-125 blood tests twice a year and a transvaginal sonogram once a year.

So, not only has removing my ovaries brought down my risk of developing ovarian cancer to about 1.5% (from 40-60%) and liberated me from years of real fear – the operation has also freed me from being poked and prodded on a recurring basis. I truly can’t tell you how thrilled I am that I had this surgery. I am free!

But wait. BRCA1 is not done with me yet. Even though I have cut my risk of breast cancer in half by having my ovaries removed, women with BRCA1 have up to an 85% lifetime chance of developing breast cancer. (The statistic for the general population is 12%). Breast cancer is still an all-too-real possibility. So, now what?

Well, because I’ve long known about my genetic predisposition to these cancers, I’ve always gone for routine breast MRIs and mammograms, so
I’ll continue that. I also see a medical oncologist once a year who specializes in breast cancer, so I’ll keep seeing her. But looming in the future is another operation I will have to consider: an elective bi-lateral mastectomy to prevent breast cancer.

For now though, I’ll continue to heal and enjoy the holidays. I’ll even take the time to walk in the woods and throw snowballs with my children. And when I toast the New Year in a few days, I’ll drink to my new, ovarian-cancer-free-life.

One day at a time. One day at a time. Happy New Year!

**Since my recovery from cancer-prevention surgery has been so wonderfully ordinary, this will be my last Blog specifically related to my operation on November 29th, 2007. Of course, I’ll keep you updated should anything develop I think is worth sharing.

Please keep your comments, questions, and emails coming. I’d love to keep this important — too often secret — conversation going. It’s
important we talk. These are, quite literally, life and death decisions. They deserve and require public discussion.

My focus will now be on what’s ahead – my husband, my kids, and writing my next book. Thank you for sharing my journey with me

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14 Days Post-Op: My Journey to Prevent Ovarian Cancer

Today is two weeks since my surgery and I basically feel as if I never had an operation. The best news I can report is that I haven’t had a single hot flash. Not one. So far, surgical menopause is just something I was anticipating and fearing – but haven’t had to deal with — and maybe never will. I am not on any hormones and won’t be taking any unless my symptoms change.

My biggest concern right now is getting myself on a diet of good food and supplements to prevent osteoporosis. Osteoporosis is usually  associated with older women who’ve gone through menopause naturally and gradually – but since I’ve had my ovaries removed and because I’m now in menopause – I need to care about calcium and vitamin D more than most 37-year-old women. Because of that, my doctor told me I should schedule a base-line bone density test and I’ve also decided to make an appointment with a nutritionist.

I go back to my surgeon next Tuesday for what I’m expecting to be my last follow-up visit. While I’m a little more tired than I’d like, my doctor has assured me that my fatigue is simply the result of having had a major operation and that I’ll be back to my normal energy level soon. That’s good…and bad. I’ve gotten used to puttering around my house, reading magazines, and generally avoiding work…Well, all good rest must come to an end…even if the R&R started because of surgery.

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7 Days Post Op: My Journey to Prevent Ovarian Cancer

I am “grossly unremarkable.”

Those are the best words I could have heard yesterday when I went to see my doctor for the first time following my operation a week ago today. He didn’t actually say it about me — he was showing them to me typed out on a surgical pathology report.

While I was under anesthesia, my uterus, cervix, fallopian tubes, and ovaries had all been sent to the Mount Sinai Hospital Laboratory for analysis to make sure cancerous cells weren’t lurking in places my doctor couldn’t see for himself. My “specimens” were weighed, measured, dissected, and scanned. And then, written at the top of the report, my parts were pronounced, “grossly unremarkable.”

In addition to the report, my surgeon surprised me with some pictures. Because the surgery was performed laparoscopically, and a camera was already inside my belly, he had snapped photos of everything he was removing. It’s pretty amazing to see what your ovaries and fallopian tubes really look like. The best picture though, by far, is the one of my uterus. It looks like a small crab – the body round and firm – with the fallopian tubes sticking out like legs. It’s reddish-pink and, as my pathology report detailed, “glistening.” Yes, I had a glistening uterus.

I stared at the picture in awe. My children were once inside that pouch. Cells had grown and multiplied behind the walls of that semi-inflated balloon and produced a perfect boy and girl. There it was in my hands: a color, glossy photograph of the outside of Jake and Lexi’s first room. I couldn’t wait to show them.

When Jake and Lexi got home, and after they had had their afternoon snack, I whipped out the pictures. They loved the photo of where they “grew-up” before they were born. They laughed and asked surprisingly good questions. The entire show-and-tell took about four minutes, but at five and seven, they quickly decided it would be more fun to go outside and play then stay inside with mom looking at her new pictures.

But I love the photos and find myself looking at them throughout the day. They are reminders that before I ever heard of BRCA1, or even thought about having an oophorectomy and hysterectomy, these amazing parts did what they were supposed to do: they gave me two precious gifts who are now playing in my front yard.

4 Days Post-Op: My Journey to Prevent Ovarian Cancer

An enormous wave of relief flew through my body Thursday afternoon when I woke up from surgery. I was barely awake in the recovery room – still on morphine – and all at once I realized that I had not only made it through the operation (I was alive!) but I would never live in fear of ovarian cancer again. Laying down on that gurney, with needles and tubes in my arms and a catheter pushed between my legs, I felt
liberated. The cancer cloud that had been following me around since my mother died of ovarian cancer 11 years ago was nearly gone and all that was left was me.

The relief I felt was only magnified when my doctor visited me. I still harbored a very real fear that he found something wrong with my ovaries and I imagined him saying, “We were lucky. It’s Stage 1. If you hadn’t had this surgery, we never would have known and it would have been much worse. We caught the cancer early.” So when I asked him if everything looked normal, and he assured me that my ovaries were
completely fine, I started to cry. I dodged a bullet and I was truly free.

My operation was done laparoscopically and now all I have are three little bandages. One is by my belly button, the other is at my right hip bone, and the third is way down below my bikini line. The tape and gauze will fall off sometime in the shower and the internal stitches will just dissolve. I was given a prescription for Percocet – but all I need is Motrin. I was exhausted Thursday following surgery and have
been slowly getting my energy back every day. It hurts more when I sit than when I stand up or lie down – so writing this Blog today has taken me much longer than usual; Every minute or so I need to leave my computer and do something else. Maybe I’ll bring my laptop to bed and try typing on my side…

Other than that, I am still waiting for that big change. When will I feel some huge shift has taken place and that I am a different person? When will those hot flashes strike? So far, I just feel like someone punched me in the stomach and that’s about it. I feel absolutely the same. Actually, that’s not true. I feel better than the same. I feel younger and fear-free. Fear made me feel old. Fear made me feel like I could die today, tomorrow…sometime. Death was real. Now, death feels distant and life is what feels more possible than ever.

I go back to my doctor the day after tomorrow for my post-op check-up. I’ll keep you posted.

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Update on My Surgery To Prevent Ovarian Cancer

Howdy – My name is Mark – and I’m Allison’s husband. As I write this, Allison is in her hospital bed right beside me. It’s 7pm in New York.

The surgery went very well — as well as we could have hoped. With this type of surgery, the going-in plan is to do it laproscopically. The back-up plan is traditional abdominal surgery with a large incision (Think Cesarean) and days of recovery. Thank goodness everything went as planned and Allison has only three teeny, tiny incisions – about ½’ each.

The day didn’t start out nearly so smoothly. As Allison noted yesterday, she hurt her ankle badly while walking the kids to school in the morning; she was laid up in bed all day. It looked like she was trying to smuggle a tennis ball in her ankle. Ouch. Her concern about the surgery potentially being put off by the ankle injury was well founded. There was a short window of time when there was a chance the surgery would be put on hold. While it’s elective – and fully ‘postpone-able’ – the patchwork quilt of childcare help that we’ve put in place would have been difficult to unravel. Also, and more importantly, Allison has been looking forward to this day for months.

Her ankle was so swollen, they didn’t know if she’d be able to walk well after the surgery. Walking is a key way to get things moving inside (bowels, etc.) – and to counter the effects of the anesthesia. Plus, there was a momentary concern that the swelling could contribute to a blood clot during surgery. An x-ray proved negative; no broken ankle. The surgery began as planned – if a bit late.

I got the call from the surgeon about an hour later. All went well. Ovaries. Tubes. Uterus. Cervix. All removed as uneventfully as you can imagine. All the tissues looked normal. He even gave her liver a look-see when he was in there. No charge. All normal.

Allison is resting peacefully. We hit the lottery and got a private room – without even asking. She’ll get on her feet on Friday (tomorrow) morning with a goal of trying to get well enough to leave the hospital quickly. As the surgery started about two hours later than expected, I’m not sure that’ll happen tomorrow. Hopeful – but not confident.

However long it takes – I’m psyched that Allison made this choice. Short-term won’t be easy – but the potential alternative is even less desirable. I’m happy that my wife – the ‘planner’ in our almost 20-year relationship – planned to get tested for the BRCA gene – and planned to have this surgery.

The next post will likely be from Allison once she’s up to it. Thank you all for being her extended, virtual support group. I think she’s gotten more from the process of blogging on this topic than you know.

 
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1 Day and Counting: My Journey to Prevent Ovarian Cancer

Preparing for surgery these last few days has been like getting ready to go into labor. I’ve been nesting. My house is tidy and the fridge is full. I’ve also gotten a haircut, my nails done, and even indulged in a massage. The cleaning was going to continue this morning until I
twisted my ankle and fell flat on my face walking my kids to the bus stop.

Now I lay here in my bedroom – my leg elevated and covered in ice. My left ankle is the size of a tennis ball and when I walk it hurts. A LOT. To make matters worse, I can’t even hobble to the kitchen to dull the pain with a bowl of Frosted Flakes. I’m not allowed to eat today. Clear liquids only; I have surgery tomorrow.

I am going to make it through today. The Tylenol I just took will kick in soon. I can’t have a broken ankle. Not now! I have an appointment with a surgeon tomorrow and the operation may just save my life.

Tomorrow morning I will wake-up, cuddle with my kids, and then take off with my husband, Mark, for the hospital. The surgery is scheduled for 9:30am and I’ve been asked to check-in at 7:30am. Mark will update my Blog tomorrow and he’ll let you know how I’m doing. Then, as soon as I’m able, I’ll start writing again and tell you how I’m feeling.

Tomorrow can’t come soon enough. I’m ready for surgery. Even if I have to limp to get there.

2 Days and Counting: My Journey to Prevent Ovarian Cancer

There’s an open box of tampons sitting on my bathroom counter and I can’t get myself to put them away. Every time I pee or put on make-up, there they are, staring at me. The little blue carton has taken on illogical meaning these last few days – like the pack should be carefully placed in a glass case and observed – like an artifact. If archaeologists discovered them in the cabinet under my sink, they’d presume a young woman once lived here – a woman who could get pregnant and have children. The tampons are a relic of my younger, carefree life.

Of course, I really don’t need to keep them. My last period ended this weekend. But when I considered throwing the tampons away or giving them to a friend, my thoughts unexpectedly jumped ahead 8 or 9 years – when my now 5-year-old daughter, Lexi, will get her period. The idea of her not being able to raid my personal stash, as I had done with my own mother, turned my stomach and tightened my throat. I started to grieve the part of our relationship Lexi and I will never share.

Women connect through our menstrual cycles; I was with my grandmother when I first got mine. She made me stay in her bathroom, promising not to leave, until she could run to the supermarket and buy some pads. My grandmother hadn’t had her period in years and was excited that this was all happening on her watch. When she got back from the store with a grocery bag full of the necessary supplies, she eagerly talked me through what was happening with my body. When I got home, my mother picked up where my grandmother left off. My mom taught me how to use tampons. Tampons as baton. We learn from the older women in our lives.

Lexi will no doubt rely on me too and I don’t think she’ll care that I stopped getting my period when I was 37. What I think is more important is that by having my surgery the day after tomorrow, I am doing my best to ensure I’ll be here to answer all her questions when that unforgettable moment comes.

So, I’m keeping my half-full box of tampons. When Lexi is ready, I’ll be ready. Eventually, I’ll tuck them away in the back of my bathroom cabinet under the sink. But for now, I like looking at the box. It’s somehow comforting.

Maybe I’ll put them away when I get back from the hospital.

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7 Days and Counting: My Journey to Prevent Ovarian Cancer

I have a lot to be thankful for this Thanksgiving. My husband. My kids. My family. But as I prepare to get my ovaries removed and undergo a hysterectomy in exactly one week from today — it is my mother, who died 11 years ago, whom I am thankful for the most.

My mom passed away from ovarian cancer when I was 25. Before I was married. Before I had children. And today, as I was chopping onions to add to the stuffing, I remembered something I wrote on this blog seven months ago and it seemed so very perfect I had to share the sentiment of it again today:

I am thankful for all the gifts my mother gave me in her life. But now, I am aware of another precious gift she’s given me: by dying so young, she may have given life to me twice. If she didn’t pass away so young, I would never have known I was at increased risk; I would never have gotten tested. My kids may have lost their mom.

And, by the way, I am also thankful for my period, which I got yesterday, for the last time.

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10 Days and Counting: My Journey to Prevent Ovarian Cancer

I just got off the phone with my doctor’s office and I have been officially cleared for surgery. The results of the pre-op blood work I did last week came back all fine.

And, in honor of Thanksgiving, I thought you’d love to read the menu I was given for next Wednesday, November 28th, the day-before-my-operation:

The patient (that’s me!) should be on a clear liquid diet the day before surgery.

* Water
* Apple or White Grape Juice
* Clear Broth – Bouillon Cubes or Powder (Chicken or Beef)
* Ginger Ale, Sprite, or 7-Up
* Jello — Any Color Except Red or Purple (Light Colors Only)
* Ice Pops – Lemon or Lime
* Tea without Milk
* Gatorade (Light Colors Only)

And, starting at 9:00am that same day, I’ll have to drink one 10oz bottle of Magnesium Citrate. Delicious.

The operation is getting very close and I am thrilled that it’ll soon be here. Ever since my mother died of ovarian cancer 11 years ago, I’ve had a cancer-cloud hovering over my head and I’ll be relieved to have it gone. But, I must admit, I am getting more and more anxious.

My nerves, though, are not about whether or not to have the surgery; I am very clear about that. I know it’s the right choice — for me. I know that tackling my BRCA1 status head-on is the only decision I was ever going to make. What I am nervous about is the surgery itself and my fear of being put to sleep and never waking up again.

So, this Thanksgiving will be extra special for me:

I will hug my children harder. Kiss my husband longer. And eat a lot more pumpkin pie.

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13 Days and Counting: My Journey to Prevent Ovarian Cancer

This week I met with my doctor for the last time before my surgery. I showed up with my husband and a very clear agenda of what I wanted to discuss. I needed to figure out — once and for all — what we were going to do about my cervix.

I had long thought that along with my ovaries and uterus, I would automatically take my cervix out, too. If I was going this far by having prophylactic surgery to prevent getting cancer, I might as well remove my cervix. Why stop there? I had also assumed BRCA1 affected my chances of developing cervical cancer. It made sense to take it out. But, within the last few weeks, I had heard that removing my cervix might be a mistake — like throwing the baby out with the bath water. And ever since those rumors hit my ears, I have been anxiously struggling with the pros and cons of making this huge, irreversible decision.

There seemed to be one primary reason to keep my cervix. The cervix, I was told, leads to greater sexual satisfaction and that by taking it out, I would be decreasing my ability to enjoy sex with my husband. Fantastic. It’s enough that this surgery will force me into menopause before I’m 40…but now I may be altering my ability to enjoy sex? I’m only 37! Is it too much to reduce my risk of cancer and have fun with Mark well into old age?

I panicked. And the research I was doing didn’t do much to calm my growing unease. In fact, the more phone calls I made and the more Googling I did, the more nervous and upset I became. Turns out there are very few guidelines written for women like me, who have tested positive for BRCA1, and who are making these surgical decisions.

My doctor told me very clearly that removing my cervix will not impact our sex life. He even joked — looking right at Mark — that any man who says he could tell if a woman has a cervix (or not) is a liar. And, if I wanted to keep it, he wouldn’t be able to do the surgery laporascopically as planned; he’d have to perform the surgery abdominally, the old-fashioned way. Abdominal surgery means a longer hospital stay and recovery.

The record was also set straight, by the way, on something else: BRCA1 does NOT impact a woman’s chances of getting cervical cancer. My doctor told me they are not related at all. Cervical cancer is caused by a virus — not a genetic defect.

So, after weeks of emotional distress, my final decision took me all of a few seconds to make: on Thursday, November, 29th, my cervix is also coming out. My surgery will be shorter. My recovery will be quicker. And I’ll still have great sex, too.

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