Tag Archives: cancer

23andMe Has Changed

Now on the 23andMe.com website:

Welcome to 23andMe.

At this time, we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.

We are continuing to provide you with both ancestry-related genetic tests and raw genetic data, without 23andMe’s interpretation.

If you are an existing customer please click the button below and then go to the health page for additional information, including information about refunds.

We remain firmly committed to fulfilling our long-term mission to help people everywhere have access to their own genetic data and have the ability to use that information to improve their lives.

Upon entering the site, please confirm you understand the new changes in our services.

I first got interested in the 23andMe DNA testing after hearing about Angelina Jolie having a preventive double mastectomy. Most adoptees don’t have the genetic information of their ancestors that would lead them to go to their doctors and order the specific test required to see if they carried the gene that could lead to breast cancer. We have to rely on regular mammograms and doctors’ visits, hoping that cancer would be caught in time. However, since annual mammograms are not recommended until age fifty, and many cancers start well before fifty, we adoptees could be in added danger without knowing our family history.

I procrastinated. I was a little nervous to get tested. I’d already done a DNA test with Ancestry.com and found many distant relatives. None genetically close. No 1st or 2nd cousins. After seeing so many people “like” the website on Facebook, I finally got the nerve to order the test from 23andMe. The immediate reply I got was that the test was not available in Maryland, where I live. When my daughter moved to Virginia I decided to order the test using her address. That would fool them. They’d never know. I’d finally get a little, long overdue, genetic information. Haha, they fooled me. Again, I waited too long. By the time I went online to order the test, it was too late. The FDA ordered them to stop testing.

I wondered why. Are they afraid we wouldn’t know what to do with the information? Are they afraid we’d all go out and do something rash, like see a doctor, if we learned we had a potentially dangerous gene? Most people who aren’t adopted have an alcoholic uncle who shows up at family gatherings. Do they stop having children because they might have an alcoholic gene? Or if their aunt died from ovarian cancer, do they run out and get a hysterectomy?  What is the FDA afraid of?

I would like to get tested. For $99, I’m sure I wouldn’t get the same info that Angelina Jolie got for $5,000. But this test might lead me to go to my doctor and ask more questions. Perhaps order more tests. Or specific tests. It’s the unknown that scares me. I want to know more. Please.

What do you think? Maybe the government, or the FDA, could offer a basic gene screening with the results going directly to our doctor. That way, when the doctor asks me for the hundredth time, is there anyone in your family…? I don’t have to answer, “I’m adopted. I don’t know.”

What are your thoughts?

.

Advertisements

Unsealing Original Birth Certificates

Sometimes I wish I was running for president and, by law, had to produce my original birth certificate. Because now, I can’t. My records are sealed. The date stamped on the New Jersey birth certificate I have is thirteen months after my date of birth. I wonder what happened during that time. And what about the nine months before my birth. Don’t I have a right to know about my own birth? It’s my story.

It breaks my heart to see so many faces of adoptees and birth moms posting their birth dates on Facebook, like families searching for survivors after 9/11 or a devastating hurricane, hoping to find some family member who will recognize them. Who will know their story. Know who they are. Where they came from. Will want to meet them. Hug them. Tell them they were loved. They weren’t a mistake. They were a blessing. Maybe for another family, but a blessing non-the-less.

Wanting to know about our origins does not diminish our love for our adoptive family. The family who raised us. But no one should be denied the opportunity to know everything about themselves.

Hereditary illnesses. Genetic defects. Cancer. Heart attacks. Diabetes. Conditions passed on from one generation to the next. Those unwanted gifts from blood relatives. The questions on every medical questionnaire at every doctor’s office. I don’t know why there isn’t a place to check: adopted, history doesn’t apply.

Sealed records are not fair to the millions of adoptees searching for any information about their past or for the birth moms who want to find the children who’s birthdays they’ve remembered in silence every year. What can we do? I’m not sure. I’d personally like to take this to the Supreme Court. Realistically, I can’t do that alone.

Write to me. Comment. Tell me your feelings. Why you want to know about your origins. Why you would like to have your original birth certificate unsealed. Maybe together we can make a difference.

Aside

My two adult step children visited this past weekend when they were in town for a family wedding. We had just finished a late dinner. After clearing the dishes from the table, it was gift time. I returned to my … Continue reading

Adopted in New Jersey

Having been adopted in New Jersey, I was never able to obtain my original birth certificate. Growing up I begged my adoptive mother over and over for any possible information she might have about my birth mother until one day, shooting her foot through the kitchen wall she screamed, “Don’t ever ask me that again.” I guess that was the end of the story. For years I would go on believing I must have been the product of rape, incest or my birth mother just wanted to get rid of me. I never fantasized about being the daughter of famous celebrities who were unable to raise me fearing an illegitimate birth might ruin their careers. This was a few (?) years ago. At least I thought this was the end of the story until my mother was on her death bed.  Literally.

Mom put much effort into apologizing to me during those weeks I sat at her bedside trying to comfort her after we realized the end to her two year battle with cancer was near. “I know I was a bitch you,” came as a surprise to me.  I smiled, figuring it was probably the morphine talking, allowing her the freedom to let go of her pride for once in her life. “You were a lovable bitch”, I responded, with a wink and a smile, while my heart was breaking inside. Why couldn’t she have apologized years ago?  Why do they always wait until their deathbed?  It’s like the parents who know their children are struggling financially, but refuse them monetary help when they need it saving it instead for “the inheritance.”  By the time the will is read, the family is bitter and torn apart.

We both laughed.  For the first time in years, maybe ever, we talked.  Opened up.  In this dreary hospital room, with its green walls, threadbare divider curtains, IV drip, heartbeat monitor, this same hospital where my son was born, for the first time in my memory my Mom wasn’t judgmental.  Telling me she was proud of me I could only think, why did she wait until she was dying?  No one knew the pain I felt growing up.  I couldn’t tell her how she had hurt me. Not now. She was dying. I let her talk.

A week before she died she told me about a “lock box” that was hidden in the back of the top shelf in her bedroom closet. “There are important papers in there.” She said. Then she gave me the secret code. “Your daddy’s birthday”.

For the first time I was nervous being alone in her house, my childhood home.  Before this trip my only concerns involved the safety of my children as I had left both of them with their alcoholic father, trusting in God to watch over the three of them while I visited my dying mother, and how much longer my mother had to live, praying at this point that her pain would end soon.  As I prepared myself to open “the box, the secret hidden box,” I felt my heart pounding in my throat.

Balancing on a chair pulled up to the bedroom closet, reaching past the stacks of hat boxes, the silk scarves and leather gloves, my hand touched the metal of a small box, like a buried treasure.  I pulled the box down from the closet, placed it on her quilted bedspread and stared at it as I got comfortable in my usual position, legs tucked beneath me.  Memories started flooding into my head like the waters crushing back together after Charlton Heston parted the Red Sea. Like it was yesterday I pictured my Koko, surrounded by her litter of eight poodles, resting on the blood stained blanket right there, in front of this same mirrored closet door.

I looked at the box. After taking a deep breath I rotated the first cylinder to “6”.  The second was already in the correct position.  After easing the third cylinder into place I could feel the lid release and slowly open.  Although I had no idea what was in this treasure chest, I knew it contained something important.  I rifled through lots of papers.  Mostly insurance docs.  Itemized lists assigning values to the jewelry, furs, monogrammed silverware and the China my father shipped over from Hungary during the war.  “My inheritance”.

My parents weren’t wealthy by any means, but they liked their trinkets.

As I worked my way through the documents I came to a sudden halt.  My heart stopped.  “Adoption Papers”.  Oh my God. It listed my birth mother’s last name.  My eyes burned as hot tears flowed down my cheeks into my mouth. I could hardly read the documents my eyes were so filled. After removing my fogged over contact lenses, I was able to examine the hand typed court documents drafted so many years ago.  While I studied the pages, one memory came to mind.

“Don’t ever ask me that again”.  Was she telling me where this box was so I’d find the adoption papers and open a dialog?  Did she want me to ask her about this now?  Was she ready to talk?  She had apologized for being so mean to me all my life. She realized she had been unfair.  But was she ready to talk?  Is this why she told me about the box?

I returned to the hospital the next morning expecting her to ask me about the box. Did you find the box, do you have any questions?  I’m ready now to answer anything.  But no. She never mentioned the lock box and I didn’t have the heart, or guts, to bring it up at this time. She was dying. I wasn’t going to do or say anything that would upset her now. She had to be the one to broach the subject.  I waited. Nothing.

No matter how many disappointments my mother had in her life, she could never bring herself to talk to me about her greatest disappointment of all – that she could not give birth. She said nothing and I said nothing.

She died the following week. Her secret intact.

(This is an excerpt from my new memoir about my twenty-four year search to find out who this mysterious birth mother was. Along the way, I learned who my birth father was as well.)

Mom’s Confession: The Secret Box

Having been adopted in New Jersey, I was never able to obtain my original birth certificate. Growing up I begged my adoptive mother over and over for any possible information she might have about my birth mother until one day, shooting her foot through the kitchen wall she screamed, “Don’t ever ask me that again.” I guess that was the end of the story. For years I would go on believing I must have been the product of rape, incest or my birth mother just wanted to get rid of me. I never fantasized about being the daughter of famous celebrities who were unable to raise me fearing an illegitimate birth might ruin their careers. This was a few (?) years ago. At least I thought this was the end of the story until my mother was on her death bed.  Literally.

Mom put much effort into apologizing to me during those weeks I sat at her bedside trying to comfort her after we realized the end to her two year battle with cancer was near. “I know I was a bitch you,” came as a surprise to me.  I smiled, figuring it was probably the morphine talking, allowing her the freedom to let go of her pride for once in her life. “You were a lovable bitch”, I responded, with a wink and a smile, while my heart was breaking inside. Why couldn’t she have apologized years ago?  Why do they always wait until their deathbed?  It’s like the parents who know their children are struggling financially, but refuse them monetary help when they need it saving it instead for “the inheritance.”  By the time the will is read, the family is bitter and torn apart.

We both laughed.  For the first time in years, maybe ever, we talked.  Opened up.  In this dreary hospital room, with its green walls, threadbare divider curtains, IV drip, heartbeat monitor, this same hospital where my son was born, for the first time in my memory my Mom wasn’t judgmental.  Telling me she was proud of me I could only think, why did she wait until she was dying?  No one knew the pain I felt growing up.  I couldn’t tell her how she had hurt me. Not now. She was dying. I let her talk.

A week before she died she told me about a “lock box” that was hidden in the back of the top shelf in her bedroom closet. “There are important papers in there.” She said. Then she gave me the secret code. “Your daddy’s birthday”.

For the first time I was nervous being alone in her house, my childhood home.  Before this trip my only concerns involved the safety of my children as I had left both of them with their alcoholic father, trusting in God to watch over the three of them while I visited my dying mother, and how much longer my mother had to live, praying at this point that her pain would end soon.  As I prepared myself to open “the box, the secret hidden box,” I felt my heart pounding in my throat.

Balancing on a chair pulled up to the bedroom closet, reaching past the stacks of hat boxes, the silk scarves and leather gloves, my hand touched the metal of a small box, like a buried treasure.  I pulled the box down from the closet, placed it on her quilted bedspread and stared at it as I got comfortable in my usual position, legs tucked beneath me.  Memories started flooding into my head like the waters crushing back together after Charlton Heston parted the Red Sea. Like it was yesterday I pictured my Koko, surrounded by her litter of eight poodles, resting on the blood stained blanket right there, in front of this same mirrored closet door.

I looked at the box. After taking a deep breath I rotated the first cylinder to “6”.  The second was already in the correct position.  After easing the third cylinder into place I could feel the lid release and slowly open.  Although I had no idea what was in this treasure chest, I knew it contained something important.  I rifled through lots of papers.  Mostly insurance docs.  Itemized lists assigning values to the jewelry, furs, monogrammed silverware and the China my father shipped over from Hungary during the war.  “My inheritance”.

My parents weren’t wealthy by any means, but they liked their trinkets.

As I worked my way through the documents I came to a sudden halt.  My heart stopped.  “Adoption Papers”.  Oh my God. It listed my birth name.  My eyes burned as hot tears flowed down my cheeks into my mouth. I could hardly read the documents my eyes were so filled. After removing my fogged over contact lenses, I was able to examine the hand typed court documents drafted so many years ago.  While I studied the pages, one memory came to mind.

“Don’t ever ask me that again”.  Was she telling me where this box was so I’d find the adoption papers and open a dialog?  Did she want me to ask her about this now?  Was she ready to talk?  She had apologized for being so mean to me all my life. She realized she had been unfair.  But was she ready to talk?  Is this why she told me about the box?

I returned to the hospital the next morning expecting her to ask me about the box. Did you find the box, do you have any questions?  I’m ready now to answer anything.  But no. She never mentioned the lock box and I didn’t have the heart, or guts, to bring it up at this time. She was dying. I wasn’t going to do or say anything that would upset her now. She had to be the one to broach the subject.  I waited. Nothing.

No matter how many disappointments my mother had in her life, she could never bring herself to talk to me about her greatest disappointment of all – that she could not give birth. She said nothing and I said nothing.

She died the following week. Her secret intact.

The World’s Best Cook!

I miss my Mom most at the holidays. After she succumbed to her two year battle with cancer years ago, we felt some relief knowing she would no longer wince in agony with each an every movement. The morphine helped alleviate some of the pain, but not all. I felt so guilty, wiping a tear from my eye, selfishly thinking I’ll never again taste her chicken soup. If it was such good medicine, why couldn’t it cure her cancer? Maybe the secret is having someone else make it for you. I tried to make it for her, but mine was not as good. It didn’t work.

My Mom was the world’s best cook, and the world’s worst cook. Although we spent countless hours cooking together in the kitchen while I was growing up, I had never realized that the secret to her cooking was in the burning. Yes, that’s right. It was the burnt foods that tasted the best. No, not the burnt parts, but the parts that were right next to the burnt parts that were the most flavorful. Before Food TV taught us to caramelize our onions, my Mom would almost burn them. They were delicious.

Standing at the kitchen counter by her side growing up I learned her secret to killer chocolate brownies was adding a little coffee to the batter. We would taste the batter over and over to make sure it was absolutely perfect before serving it to company. Maybe that’s why we both had a weight problem. We were perfectionists. Sadly, as the tumor attached to her spine grew, her appetite diminished. As I was the one cooking, she no longer got to enjoy the tasting part. Although she praised my creations, her appetite was gone. No matter how hard I tried to please her, eventually she found little enjoyment in food.

Instead of cooking, we began spending a lot of time shopping. The exercise was good for her. And with her diminished appetite, her clothes were starting to get loose. We splurged on vibrantly colored workout suits. She found the cutest gold purse to hold her portable chemo pump. She was by far the most fashionable patient on the oncology ward as well as most stylish shopper at the supermarket. With only a few months remaining in her life, we laughed as acquaintances, those who didn’t know she suffered from cancer, commented on how “she never looked better!” What a cruel irony.

After my Mom passed away, a mere five years after my Dad succumbed to heart failure, I found her recipe collection. In her memory I was determined to duplicate her fabulous chicken soup, her world renowned Mandelbrot and most important, her to-die-for chopped liver. I know, not everyone is a fan of chopped liver. But hers was killer. It was the only food I liked better than chocolate.

I tried and I tried to duplicate her recipe. I sautéed the onions and liver. I added the chicken schmaltz just like she said. I added a little raw onion and hard boiled eggs. I seasoned it with salt and pepper and chopped it by hand with the same chopping blade she had used for over forty years. It was close, but not perfect. Something was missing. I tried again, and again. Not ready to give up I put the onions and the liver in the pan, on low heat, and thought I was safe going to the bathroom for a few minutes. I was wrong. I smelled something coming from the kitchen and checked to make sure the house wasn’t burning down like the time I burned the kitchen as a teenager broiling lamb chops. But that’s a different story. I was worried about my kitchen, but mostly, my chopped liver. I got there just in time. The liver was dry and charred, but not ruined. The onions were black. I went ahead and finished making the recipe. Oh My God. It was perfect! The secret, I found out, was that the liver had to dry out and the onions had to almost burn to bring out the sweetness. Yum!

Since becoming vegetarian, I no longer make real chopped liver. But I developed a recipe that tastes really close. And since there is no liver involved, everyone is willing to try it.

Mock Chopped Liver – Vegan

2 cups water

1 cup lentils

2 teaspoons vegetarian chicken flavoring

1 teaspoon olive oil

1 large onion

Salt and pepper to taste.

Combine water, lentils and vegetarian chicken flavoring in a pot and cook for about 40 minutes, until tender. Drain if there is any liquid left. Sauté the onion in the olive oil. Combine lentils and onion and “chop” with a handheld beater. Season, if necessary, with salt and pepper.

Serve on challah, matzo, crackers or toast. Enjoy!

This is perfect for break-the-fast. Happy New Year to all.