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.

Wine & Whine

About once a month, I meet with a couple of friends, and we vent and rant about what's on our minds. We're a safe outlet to share our fears and frustrations about all that the issues we're facing in midlife. Since we cluster around food & drink and talk nonstop into the night, we thought it was fitting to call our gathering, "Wine & Whine." While some find value in book clubs, we find meaning in whining.

Naturally, all conversations are strictly private, so I won't share any details. However, the one common denominator is how much we've all endured by the time we've reached the age we are now. Our journey has not always led us down a yellow brick road to the Emerald City where all wishes are granted. We are no longer wide-eyed, innocent Dorothy's, who triumph over the Wicked Witch. Life is a little more complicated than that.

I will tell you that since Gary & I have been married (8 years), we have navigated through financial hits, career crises, elderly parents with debilitating illnesses, extended family concerns...and then there's cancer added to the mix. (Not to mention Atlanta traffic, but that's another rant altogether.)

It's all we've been able to do to keep our heads above water.

So, as much as I celebrate the good news of being "cancer free" now, I'm waiting for the next trauma to deal with...you could say my nerves are shot.

They call this Post Traumatic Stress Disorder (PTSD), which, like Wine & Whine, is a perfect descriptor.

After I came home from my second surgery, a friend gave me "In An Instant" by Lee Woodruff. Lee is the wife of ABC news anchor, Bob Woodruff, who suffered a critical brain injury from an explosive device while reporting the war in Iraq.

Her book totally engaged me, as I read with interest and empathy. Although Bob's head injury was severe, Lee had endured many tragedies in adulthood: She had lost a child, uprooted multiple times during her marriage, discovered one of her daughters was deaf, had a sister with a brain tumor and faced the possibility, herself, of having cancer.

She writes: "The more trauma a person has been through, the more they have seen, the worse the PTSD is. The cumulative effect appears to make the person much more susceptible."

She goes on to share how the horrific experience with her husband's slow recovery affected her: "I had morphed from a confident wife and parent into a woman fearful of everything, especially of my kids getting hurt...I saw potential head injuries everywhere. Even driving my car felt scary now. All I ever seemed to say as a mother was, 'Don't do that, stop it, be careful there.' I had become a coiled spring, waiting for the next injury or accident."

She admits, after the crisis was over and her husband was on the road to recovery: "A tiny part of me keeps waiting for a shoe to drop, for something bad to happen. When Bob doesn't answer me from another room after a few beats, I walk in to check on him. When he doesn't return from the store in a reasonable time, I make a call. These are my battle scars."

Amen, Sister! Can I ever relate! When I finished cancer treatment and began resuming a "normal life" again, I worried constantly about those I loved dying. I worried that Gary would have a car wreck on the way to the office, or his plane would crash on a business trip. (I even left his messages on voice-mail until he arrived safely home, in case that was the last time I heard his voice.)

If I had trouble reaching my parents, I imagined they were lying on the floor suffering a heart attack. Death had become a real possibility, and I realized we were all hanging onto life by a thread -- that any of us could be taken out at any moment. I didn't rest.

Although I've calmed down a little bit, I'm still on edge when it comes to my loved ones' safety. And, from time to time, I picture scenarios of potential future problems, so I can devise a plan of action -- just in case.

The one thing that helps calm me is knowing deep down that I can rise to a challenge and all that it entails. I know this because of my experience with cancer and facing my own mortality. I'm stronger than I ever realized.

Lee Woodruff makes a great point in view of her sufferings: "The moments that define us, that strip us down to raw bone and cartilage and build us back up: they are the tough ones. They are the stories of grief or tragedy, stories tinged with sadness and sorrow...I believe how we attack those curve balls is the stuff of life; they count just as much as the good times...

"And so, we have to choose to laugh and to keep smiling. We have to hope that there is always something better around the corner. We doubt our ability to rise to meet hardship, and we do everything in our power to avoid it. We have to dig down, to believe unfailingly in the ability of the human spirit to triumph in ways we didn't think possible. To make the choice to be resilient, ultimately to bounce back, is to make the choice to be grateful, as grateful as possible for the cards you've been dealt."

I might have to invite Lee Woodruff to join our Wine & Whine group.

Caring for Mom

Breast cancer, as you can imagine, isn't just a disease of the victim. It affects everyone who is connected to your life, especially your family.

Of course, my husband was greatly impacted, and obsessively worried about losing me.

But the toll on my parents is what broke my heart. What do you do when your child is sick and you can't make her better? Parents think they're supposed to cure all ills and remove all pain, and when they can't, it's torture. This was the case with my parents as I observed their grief and fear over me.

Right after it was discovered that I carried the BRCA gene, Mom & Dad were over at my house for Christmas Eve dinner. Mom was acting strange, so I pulled her aside and asked to speak to her in private.

She broke down hugged me tightly: "This shouldn't be happening to you...I'm the one who should die first, not you!"

Well, first of all, no one was talking about dying...at least, yet. I was researching surgery options at that point, not caskets and funeral arrangements.

But, I understood what she was saying. She was terrified of losing me...and all mothers take a solemn oath before they deliver their first child that they'll do everything in their power to make sure their children outlive them. That's just the way it should be, according to moms everywhere. Unfortunately, that's not always the way it turns out.

I tried to comfort her, but I knew the only thing that would reassure her would be for me to sail through these surgeries and reduce my chances of getting cancer in the future.

I realized more deeply how much my mom was suffering when she shared with me a heartbreaking email she had sent the prayer group at her church. In her anguish, she wrote:

"Julie stopped over tonight to tell us about her latest report. I can't believe she has been inundated with cancer like she has. Fortunately, the surgery was done in the nick of time since they found pre-cancerous, non-invasive cells in the tissue of the fallopian tubes. She says this was "good news" but they need to remove the uterus in 3 months down the road. I only hope this will protect her from any future cancer but who knows if it will or not?

It is very upsetting to me having brought her into this world, but now the damage has been done."

A beautiful response came from the prayer group leader, who knew the vulnerability of being a mom:

"We are keeping Julie our prayers. God, who began a good work in her, will continue it until the day He comes again! Through her healing, we will all be blessed. Hang in there. God is in control."

To my great relief, I wasn't the only one who had spectacular friends. So did Mom. Amazing, dynamic friends--with years and years of care-taking experience as moms and grandmothers.

One of Mom's best friends drove up from a beach vacation in Florida -- over a 7-hour trip--to make sure she was with Mom during my first surgery. She brought with her homemade soup and muffins. (During my second surgery, the same friend was at the hospital again with freshly baked cookies for my husband. She has earned sainthood, as far as my husband is concerned.)

Mom also received a flood of cards, calls, emails and offers to bring me food. In fact, Mom had more correspondence about my cancer than I did...which was fine with me.

When we heard the good news about my pathology report, Mom received over 50 email responses from friends and well-wishers.

People's generosity carried Mom & Dad through this nightmare than no parent should have to face--and for that, I am indebted to all the people who took time to place a call...or write a note...or say an encouraging word...or give my parents a big hug. These simple acts go a long way in getting us through the tough times in life. And when you think about it, they are actually the mightiest acts of all.