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NY Times: How New York Changed After the Worst Tragedy Too Few Remember

Thirty years ago, an arson fire at the Happy Land Social Club left 87 people dead. The effects are with us still.

Before the fire was out and the smoke had lifted, Ruben Valladares was already in the emergency room with second- and third-degree burns covering half his body. The ambulance call report, handwritten at 3:47 a.m. and updated several times over the next hour, detailed the locations of this injuries. …Continue Reading

NY Times: Rejecting the Name My Parents Chose

I was named for the main character in “Little Women.” Changing my name may be the most Jo March-like decision I could have made. Despite the byline you see on this article, the name my parents gave me was Jo. Not Josephine, just Jo. Inspired by the main character in “Little Women,” they dreamed I’d grow to become every bit as norm-bashing as Louisa May Alcott’s fictional character, Jo March….Continue Reading

NY Times: Gilding the Gutters

MONTCLAIR – JESSICA de KONINCK knew that when she put her home of nearly 21 years on the market, she would need some help. “If I ever have any free time, the last thing I’d ever want to do is spend it decorating,” Ms. de Koninck admitted.

Lack of time and interest had indeed taken a toll on her house. Ms. de Koninck had never redecorated while raising her two children, now grown, and her inclinations certainly did not shift after her husband became ill and died three years ago….Continue Reading

 

CNN.com: How celebrating deceased loved ones can make you happier

After several family members died in rapid succession, including my parents, I struggled with knowing how to keep their memories alive.

In the days and weeks immediately following their deaths, I never had to look far to tell a story or hear one. But all too soon, I hesitated to bring them up in conversation. Anecdotes I told my children seemed heavy or forced, and I didn’t want to make my friends uncomfortable. …Continue Reading

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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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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28 Days and Counting: My Journey to Prevent Ovarian Cancer

I am now on my last pack of birth control pills. With my surgery now less than a month away, I knew there would be a “last,” but I wasn’t prepared — at all — for how it would make me feel to open that final, little package.

My husband and I met right after I graduated high school. When I started college a few months later, I went to the cheapest clinic I could find to get on the pill. My memory of that appointment was that it was fun and exciting; I felt grown-up in my exclusive relationship and I could smugly ignore all those warnings about STDs. I was with Mark and we were thrilled. I’ve been on the pill – and with Mark — ever since.

The only time I’ve gone off the pill was to have children. Just a few months before each child was conceived, I stopped taking them so I could safely get pregnant without the added hormones in my body. After Jake and Lexi were born, I went right back on them.

I started taking the pill to avoid getting pregnant. Later, after my mother died of ovarian cancer, there was an added, unexpected benefit; my doctor told me that being on the pill also reduced my chances of getting ovarian cancer and I should stay on them as along as I could.

Let’s do the math. I started the pill when I was 18 and now I’m 37. I’ve been on the pill for 19 years – more than half my life. That is quite a habit to break. I’ve had to remember taking them before I go to bed. I’ve had to pack them into suitcases when I travel. I’ve had to frantically call my doctor to give me a new prescription when I misplace them. And, each and every time I pop a pill, I am reminded of my sexuality and that I am in love and married to my best friend.

So, when I opened that last pack of pills, I shouldn’t have been so surprised that I started to cry.

Taking the pill, after all, is a reminder that I am young, vital – and can, in fact, still get pregnant. It’s a reminder that I am a woman. There’s a part of me that’s in mourning.

There is no doubt that I will struggle with this change in my daily routine. But perhaps I will learn, over time, to relish the freedom of not being strapped to a pack of pills.

And, I will have to learn to celebrate my femininity, and my relationship with my husband, in new, unexpected ways.

I’m ready for the challenge.

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34 Days and Counting: My Journey to Prevent Ovarian Cancer

Once I made the decision to have surgery because of my BRCA1 diagnosis, the next challenge was figuring which procedure to have. At the very least, my doctors urged, I should remove my ovaries. That much was clear. It would reduce my chances of getting ovarian cancer by at least 90%. The other choice was to also have a hysterectomy. Now, everything was not so clear.

This has been an agonizing decision. And, because my doctor wouldn’t tell me what to do, the choice has been even more wrenching. After all, all of these procedures are elective — I don’t have cancer and I’m not even sick – and it’s purely my decision.

I was confused for a long time because there are numerous long term consequences to consider. If I just remove my ovaries, which is called an oophorectomy, I not only decrease my chances significantly of getting ovarian cancer, which is what my mother died of, but I’d also be able to keep my uterus. Keeping my uterus has merit. It hasn’t caused me any trouble, it housed each of my two children, and by keeping it, my surgery would be shorter and less complicated. My doctor also told me that the uterus keeps other body parts in place and that by taking it out, other bits and pieces inside of me might move around and fall. The example he used was that, overtime, my bladder might drop and I might start leaking when I cough or sneeze.

If I keep my uterus, though, I’d have to commit to taking hormones to induce a menstrual cycle. Women have to shed the lining of their uterus – whether they do it naturally or not.

For me, that was the deal breaker. I’d have a hysterectomy too.

Since I already have two children, I don’t truly need my uterus anymore. I’ve downgraded its importance to something like my appendix – it’s insignificant and I really wouldn’t miss it if it were gone. And, to be honest, the idea of taking hormones just to support an organ for the organ’s sake, just seems wrong. For me.

I am, apparently, in the minority. A surgeon who does these operations all the time recently told me that 70% of women who test positive for BRCA1 or BRCA2 (and who choose to have pre-cancer surgery) – opt just to take out their ovaries.

I’m OK being in the 30% who decide to go the other way. Take it all out, I say. Reduce my chances of ovarian cancer – and at the same time – the possibility of getting uterine cancer too. Hey, if I’m going under — if I’m going this far — take it all out and wake me up when it’s over.

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44 Days and Counting: My Journey to Prevent Ovarian Cancer

Why now?

Since I started writing about my journey into surgery, people have been asking me why I chose to do the surgery now. It’s a great question, of course, because it’s a decision I didn’t arrive at quickly or without a great deal of research; I’ve been grappling with it since my mother died of ovarian cancer 11 years ago.

My doctor had warned me early on that I should remove my ovaries after I was done having children. At the very latest, he urged, I should do it by the time I turned 40. Well, five years ago, I was done using them. My daughter, Lexi, was born and my family was complete. Her brother, Jake, had been born two years earlier. Boy and girl. Healthy. Done. So, why didn’t I go into the operating room then?

I was thirty-two-years-old when Lexi was born. The road ahead seemed very long without my ovaries – those tiny mood-soothing barrels of hormones I had (but not any more!) taken for granted. Instead, I decided to keep up my high-risk cancer screenings and regular doctors visits. I’d wait. I’d see. I’d hope. To be honest, though, I felt like I was gambling with my life. Every time I went to the doctor I half-expected, half-feared, that I’d made a deadly mistake. I tried to convince myself that the odds were in my favor. To take a deep breath. After all, I was at the lower end of the risk field. All the data shows that with BRCA1, the genetic mutation I have, the risk goes up with each passing year – and I wasn’t even close to 40.

Then, this summer, a routine vaginal ultrasound pushed me into moving forward. Something wasn’t right. The finding was questionable enough that my doctor wanted me to get another ultrasound in three months. A follow-up? I never needed a follow-up before. I knew what that meant. I’d seen ovarian cancer up close. Despite my doctor’s insistence that it was probably nothing, I worked myself into an hysterical panic. I diagnosed myself with cancer.

I immediately called another doctor for a second opinion. There was no way I was waiting three months. I know how quickly cancer spreads. If cancer was inside of me now, how could I give it another three months to grow? It took me several times to dial the doctor’s office because I couldn’t hold my fingers steady enough to dial accurately. My fingers, my body, were shaking uncontrollably. By the time I successfully placed the call I was crying so much the receptionist could barely understand me. I was irrational. The office gave me an appointment – if I could be there in an hour.

Turns out, I was fine. A second ultrasound ordered by the second-opinion-doctor confirmed it all. But it also confirmed something else. I couldn’t play this game anymore. I could no longer play, “Let’s Wait and See!” All I could think about on the way to the appointment were my children. How would I tell them Mommy has cancer?

I scheduled the surgery with my own doctor the next day. The stakes had just gotten too high; the very real possibility of my children losing me was just too much to gamble.

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