Memories...Of the Way I Was

In Gabrielle Garcia Marquez's book "100 Years of Solitude," he writes about a town in which all the citizens catch a disease in which the side-effect is memory loss. He must have been writing about menopause.

My memory has vanished due to the abrupt loss of estrogen resulting from my hysterectomy. A friend commisserated with me: "Instead of getting a hysterectomy, I think I got a lobotomy." She went on to say that her sister is so frustrated by her lack of memory that she's rethinking taking a vacation anywhere. She figures, why bother spending all that money when she'd forget it all six months later?

I know how she feels. I can't remember from one moment to the next. I have to write every thing down, or the thought will evaporate. I mix up the names of close friends. I misread emails and recipes. My cooking has become suspect...

Yesterday, I washed my face, applied makeup, brushed my teeth and began getting dressed for work...when I realized that I hadn't showered. All of this would be funny, except that on the drive to work, blue flashing lights caught my eye on the expressway. In a split second, the car in front of me slammed on their brakes and I had to swerve -- barely avoiding an accident -- all because I had gotten distracted.

So, now my scattered brain has gone from being mildly amusing and somewhat irritating to very scary. Friends have offered their advice -- supplements, websites, books. So much to read, so much to retain mentally.

I ask my staff to be patient with me. This group of twenty-somethings does their best to tolerate my forgetfulness, but their estrogen-filled bodies can't relate. I remember when I used to have a quick mind like they have now. This must be one of the passages in life I must adapt to. At least I can trade experience, maturity and wisdom of age for detail, multi-tasking and clarity of youth.
I guess it's time for me to switch from my natural brunette color and dye my hair blond since that typifies my state of mind from now on.

The Big "L"

Tonight is the last night of my 40s...funny how the 40s seem so youthful now.

Of course, being a Baby Boomer, I will always claim being young at heart versus the alternative. However, I can't dodge the fact that I'm moving into another decade -- and one that is without a doubt middle-age. This was verified by the AARP card I received in the mail, as we all do on this particular birthday.

A friend said not think of it as turning "50," but rather turning "L." I didn't understand what she meant -- did she mean think of it as "hell"?

"No...don't you get it?" she asked. "L is the Roman numeral for 50." So, I guess I'm "L" instead of 50.

Although I'm having to get my mind around this new decade/stage in life and crossing over to "the other side," of the aged, at the same time, I celebrate that I've reached this far in life. I'm grateful to be alive after all I went through this year - so, when you look at it that way, I think 50 is pretty cool.

It occurred to me that I've been given 3 chances at life when the odds were against me:

* Birth -- My mother was pregnant with me just 2 months after she delivered my older brother, making us Irish twins. Talk about being a "mistake," the story is told of the night Mom announced her news to Dad. It was pouring down rain and Mom & Dad were driving up the mountain in Birmingham, iwith a newborn baby crying in the car. Dad was unemployed since he had just gotten out of the military-- meaning, no money + no health insurance + 3 mouths to feed. The car died as they were going up the hill, and Mom picked that decisive moment to tell Dad that she was pregnant with me. Dad recalls how he put his head on the steering wheel and cried. Of course, I've been a blessing ever since...

* Surviving breast cancer at 42. Despite my annual gynecologist visit and mammogram not showing any trace of cancer, my monthly self-exam told me otherwise there was a problem. Because I pushed and pursued further testing after finding a lump, I saved my life.

* Surviving fallopian cancer at 49. Pursuing BRCA testing and being proactive about preventative surgeries this year resulted in finding pre-cancerous cells on my fallopian tubes, which would have ultimately killed me since I would never have known they existed until it was too late.

When I think about these incidences, I feel like there is a reason I've been spared...that there must be a purpose and meaning to my life. And tapping into that purpose - which, I believe, is being there and caring for people who are in pain, in a deep and caring way -- is how I plan to live out the rest of my life.

Happy Birthday to me.

Mentoring 101

I have become a mentor for two women I know, who were recently diagnosed with breast cancer. My heart broke each time I received the news of their diagnosis, and all I could think of was wanting to alleviate their fear and hurt. I've been there.

Both are outstanding women, who live remarkable lives. They have interesting jobs and are terrific moms. I hate this for them.

I'm also extremely touched they turned to me for help, comfort, advice. With this topic, it's impossible to avoid the personal and vulnerable in discussions. You get down to brass tacks and dirty details.

This gut-level honesty establishes a tight-knit bond quickly and powerfully. Because we're talking life and death here. (Okay, so we're also talking beauty tips...)

We discuss our mortality. We share our frustration about our predicament: what did I do to get this?...why won't the nurse call me back?...what if treatment fails? We talk about solutions to combat the side-effects of chemo and dealing with well-meaning people who do the wrong thing. Most of all, we commiserate.

I feel the weight of responsibility in not wanting to let them down. Being a mentor, you want to make sure you are doing everything you can.

But, this is where I need to be reminded of my own advice. When a friend asked what I found most helpful while undergoing cancer treatment, I told her it was every single thing people did to let me know they cared, that I mattered and that I wasn't ALONE. Feeling like everyone is living full, glorious lives while you are on the sidelines fighting a disease and missing out on everything. This is a daily struggle. When people take part in your ordeal, you are reminded that you're not on the outside...others are with you every step of the way.

I think of Jan Bilthouse, in particular. Jan, who is owner of The Bilthouse apparel boutique in Buckhead, is a breast cancer survivor and extremely involved in fundraising and mentoring for breast cancer. When I heard I carried the BRCA gene--which meant a double mastectomy--I immediately thought of Jan, who had already dealt with this. I left a message with an employee at her shop the day before Thanksgiving, and explained the reason for my call. It seemed like just a few minutes later, my phone rang. It was Jan, driving her family on the way out of town for the holiday. She responded to my call for help right then and there. It was exactly what I needed.

I hope the women I'm reaching out to will be on "the other side" of treatment soon, with a new perspective and appreciation for their lives and the knowledge that they do, in fact, matter.

Mom & The Blog

Well, the word is out. Mom has read my blog and, of course, she remembers details differently. I knew she would. She pointed out the facts I got wrong and gave another point of view about certain incidences I wrote about. I told her to start her own blog.

But, mostly, she said it appeared, as she read my blog, that all she & Dad did throughout my ordeal was 'let me rest in their easy chair." So, let me set the facts straight on this one: They were amazing.

Mom & Dad have been my support throughout my bout with breast cancer and, more recently, my BRCA testing and surgery.

From the very beginning, they have played a critical role. They were the ones who showed up at the doctor's office the day I found out I had breast cancer seven years ago. Gary was at work because I was assured by the doctor's office that they wouldn't find anything conclusive that day, so it wasn't necessary for him to be there. I sent Gary off to work that morning and he naively went. But, Mom & Dad, with their experience in caring for others over the years, knew someone should be there with me...just in case. And they were right. I was diagnosed that day, and needed them to carry me out of the doctor's office and take me home in my state of shock.

Throughout my cancer treatment, they provided food, ran errands, took me to doctors' appointments and screenings, and sat with me during all the long waits. They offered to help in any way they could. They even paid for my "chemo wig" -- with a $1,000 price tag that was not covered by health insurance at the time.

During the years following my treatment, they called for an update every single time I had a follow up doctor's appointment or mammogram.

And, this year, during all the BRCA testing and surgery, once again, they drove me to appointments, ran errands, researched information I needed, fixed food, cared for me during recovery from surgery...and let me rest in their easy chair.

Christina Applegate

The actress, Christina Applegate, has been in the news recently about having breast cancer at a young age, testing positive for the BRCA gene and undergoing a double mastectomy. In her interviews, she showed bravery and a sense of humor (saying she would have great-looking breasts in the nursing home compared to all the sagging women).

Two things I noted about this incidence. One, is how I see my parents still being affected by the stress they endured this year, worrying about their daughter having the BRCA gene and undergoing all the surgery. Mom stayed glued to the morning new shows when Christina was interviewed. Then, Mom responded by doing something she had never done before -- she posted an email on one of the national network station's site, saying that since Christina was carrying the BRCA gene, she needed to watch out for ovarian cancer as well, which was never mentioned in discussions about BRCA. For Mom to post an email to a national site told me that BRCA was still top of mind for her.

And, Mom is right. My oncologist told me during my recent visit that of her BRCA patients who have undergone the propylactic (preventative) surgeries, that 100 % -- repeat, every single one of us -- had pre-cancerous cells on the EXACT same spot on our fallopian tubes. One 100% of us. That tells you something -- that the BRCA gene is far more insidious than just breast cancer, and women need to take a hard look at the possibility of having ovarian cancer as well if they carry this gene.

The second thing that struck me with the Christina Applegate interview is her claiming to be "cured of cancer." I love her optimism and her spirit. I'm hoping she will never experience cancer again. However, the statement is false, since once cancer is in your body, you can't guarantee that there aren't other cancer cells lingering somewhere that chemo or radiation or surgery didn't eliminate.

So, although I had a double mastectomy and hysterectomy and reduced my chances significantly of developing cancer again...there's still that remote possibility there will be a stray cell that can develop into full-blown cancer. That's why I will never be able to take estrogen or consume soy products -- since estrogen/soy "feeds" cancer cells.

I am glad, however, that Christina Applegate appeared in public and shared her story -- who knows how many young women took note and began questioning their chances of carrying the BRCA gene. After being immersed in the world of BRCA this past year, I'm discovering the enormous lack of information about this gene among the breast cancer community -- especially among breast cancer survivors who are strong candidates for testing (those who developed the disease before menopause)...and especially among survivors with daughters.

A simple test could provide worlds of information that could not only save your life, but your daughter's as well.

Why Pursue BRCA Testing

Several books have popped up recently about women who discovered they carried the BRCA gene and their resulting decisions.

One woman in her thirties had a double mastectomy, but held off on a hysterectomy until she had children. The other author decided to do nothing since she felt there were more issues around early menopause, and didn't want to subject herself to all that surgery.

HERE'S WHY I PURSUED TESTING & ACTION:

• I was advised to undergo BRCA testing, since I was diagnosed with breast cancer at 42 years old. Diagnosis at an early age (pre-menopause) is an indicator that you may carry the BRCA gene.

• BRCA testing is often covered by health insurance, especially if you have already had breast cancer. Or, if you prefer, you can pay for it yourself ($3,000) so that your insurance company doesn't know.
  

• NOTE: Myriad Genetics Lab does not report results to your insurance company (it's completely confidential), so the only way this will go on your insurance record is if you have your insurer pay for it.

• The BRCA gene has implications for other family members. If it's confirmed you carry the gene mutation, then other females in your family may be at risk. The male can be a carrier (my dad passed the gene to me) and may be at risk for early prostate cancer. However, the higher risk for developing cancer is among females.

• Just because your family carries the gene mutation doesn't mean that you will inherit it. My sister-in-law's mother, aunts and grandmother all carried the BRCA gene and it wasn't passed along to her.

• Once you are diagnosed with the nightmare of breast cancer and endure all the treatment, you never want to go through that experience again. If you haven't had breast cancer, but are at high risk, you need to think long and hard about keeping yourself at risk.

• A scarier diagnosis is ovarian cancer since it's extremely hard to detect in early stages and is very aggressive and invasive. In fact, it's most often found when it's hard to effectively treat.

• I can't say this enough: Because I took immediate action -- even when my doctors thought I had more time before committing to surgery -- they found fallopian cancer in its initial stages (pre-cancerous, non-invasive cells). This was a shock to all, including my surgeons. After this discovery, I was told that had I postponed surgery just 6 months later, I would have been in trouble. It was a miracle I had surgery when I did.

• Many breast cancer survivors I've talked to who were also diagnosed at an early age have not pursued BRCA testing since they don't know enough about it and don't think it applies to them. However, when I was diagnosed with breast cancer 7 years ago, I was told by medical experts that my cancer was not linked to heredity. Seven years and tons of medical research later, it's a different story. In other words, check it out. Information may have altered since your original diagnosis.

• What I didn't realize was how significantly reconstruction surgery has developed over the years. I can honestly say that my body looks better now than before surgery. While it's not a recommended diet plan by any means, if you have to go through all the trauma of surgery, this is to assure you that there's a strong chance you'll come out of it reducing your risk of developing cancer AND with a new body as a consolation prize. This may sound shallow in light of cancer and death, but is a real concern among women (to have their body massacred) and why many don't pursue taking action.

All to say, I recommend anyone who thinks they might carry the BRCA gene to talk with their physician. If you haven't had cancer, talk with your gynecologist. If you have had cancer, discuss with your oncologist. It could save your life.

Determining My Fate

I met with my oncologist this morning for the first time since all my surgeries were completed and pathology report in. Since they had discovered "fallopian cancer" (although it was precancerous cells, it's still considered cancer), I waited for Dr. Kay to determine whether I had to face another bout of chemo or not. My future was in her hands.

With cancer, your future is always in the oncologist's hands. Period. Not the surgeons. Not the radiologists. Solely, the oncologist. Remember that.

First, I would like to point out that after umpteen times I had to starve myself before tests and surgery, and all the times I went without sustenance following surgery, and all the times I released my food via mouth (if you know what I mean) and all the time I wasn't hungry...I STILL DID NOT LOSE A SINGLE POUND THROUGH THIS ENTIRE ORDEAL!!! You would think that an ovary or two would weigh something...

So, that got me off in a bad mood this morning at the doctor's office. Then, there was over a 2-hour wait...

Finally, when I saw Dr. Kay, I was--as the saying goes--"fit to be tied." However, my frustration over my weight and wait eased substantially when I remembered that this woman, alone, had saved my life. If she had not pushed for BRCA testing, I would have been walking around with fallopian tube cancer developing...and would never have known it. And it would not have had a happy ending. I thanked her for saving my life a 2nd time. She smiled.

She told me that of all her BRCA patients, 100 percent (yes, every single one of us) had cancer developing on the exact spot on our fallopian tubes! I'm sure they will be looking more closely at that phenomenon in the future.

She also said that since I'm still only 7 years out from my breast cancer, I would still need to see her every 6 months for a blood test -- plus, an annual chest x-ray, bone density scan and an MRI for my breasts (since mammogram is no longer necessary) and a blood test for ovarian cancer (for the cells in that area).

I'm still susceptible for cancer developing in my body because of my original cancer -- plus, BRCA carriers are more vulnerable towards other types of cancer besides breast & ovarian, such as pancreatic (oh, goody).

Although this was disheartening news, on the upside, Dr. Kay said my chances of developing breast or ovarian cancer were 5 percent - significantly low.

It's a good news, bad news sort of thing. I've beaten cancer and an early death twice, as I turn 50 this year. At the same time, cancer will always be a phantom hovering over me.

But, I can accept that as my fate. I know I am mortal and I will die of something eventually. And, I'm truly grateful for being able to live this long.

And, for the time being, I don't have to face chemo again. Now, that is reason enough to pop the champagne cork -- except that champagne has calories and now I must concentrate on moving the scales in the opposite direction.