Barbara Bardin and Her Fight to Survive Ovarian Cancer
by Sue Gillis

We sadly report that Barbara passed away on April 27, 2015.

Barbara Bardin at Splash! at the Boathouse
in Burlington summer of 2012. photo: Jan Doerler

In the June 2012 issue of Vermont Woman, Barbara Bardin was our featured cover profile. It was a joyfully honest and sometimes painfully revealing interview. Barbara is the founder and owner of Splash at the Boathouse, located on the dock on Lake Champlain in Burlington. She is famous for her fun-loving spirit, imaginative catering and party management, and love of fine food and good champagne. She has a big persona, and with her generosity and knack for easy engagement, she has made hundreds of adoring friends over the years.

In October 2012 Barbara was diagnosed with ovarian cancer Stage III.

Friends, family, and associates were shocked, saddened, and worried. Typically, Barbara, though scared, immediately waged a mighty effort to win the toughest battle of her life. Like everything else she has had to overcome, Barbara took this on with the fierceness of a swashbuckling Viking, believing that by her own sheer will and with the experience and expertise of the gynecologic-oncologist team at the UVM Medical Center, the victory of life would be hers. Though the survival statistics are not good, a small percentage does beat the odds. Barbara believed she would be one of those lucky ones. Everyone was rooting for her.

She had undergone testing for the gene mutation for BRCA1 and BRCA2, but the results were negative. She did, however, have elevated numbers for the CA125 blood test, one of several tests used in the diagnostic process for ovarian cancer. Standard treatment for ovarian cancer patients includes a hysterectomy and surgical debulking, followed by multiple rounds of chemo—which Barbara underwent. But despite the best efforts of Barbara’s team of health providers, the cancer recurred.

This past February 2015, her doctors told her there was nothing more they could do.

Barbara, 64, lives alone in a lovely condo on Lakeview Terrace with a spectacular view of Lake Champlain. She very generously consented to be interviewed by Vermont Woman to help educate and bring awareness to our readers about ovarian cancer. The interview was conducted in her living room on March 31. It was an emotional meeting with many pauses for tears.

Sadly, on April 2 Barbara was admitted to the hospital for pain management care and further testing. Arrangements have been made for her to enter into hospice care as we go to press on April 10.

Barbara, you are just back from a five-day getaway to Key West.

Yes, 10 of us rented a house with a pool, and I tried to have a good time. I kept up the best could, but I was in some pain and discomfort most of the time.

Please describe your current condition.

I am quite bloated and nauseous, cannot really eat, and have difficulty going to the bathroom. I have an appointment with my oncologist in the morning. I’m worried.

Are you taking any drugs for pain?

No. I wanted to stay alert, but I think that’s going to change soon.

Do you feel up to continuing this interview?

Yes. It’s important to me to tell my story. Maybe it will help others.

Tell me when you first noticed symptoms that something was wrong and what they were.

In the winter of 2012, I felt bloated and had mild cramping and frequent urination. I really did not feel very good.

What did you do about it?

Nothing except drink a lot of water, took garlic pills—anything to make myself feel better. I really did not think anything was so seriously wrong that I could not fix it.

So how long did these symptoms continue?

All through the spring, summer, and fall. I tried to ignore them and carried on with my life.

So at least nine months went by. When and why did you finally decide to see a doctor?

In October 2012, after Splash was closed for the season, I made an appointment with my primary care doctor mostly because I still had these symptoms and they were not going away.

What did he say and do?

He ordered a CAT scan for the next morning and called me into his office at 11 a.m. the same day. I knew it was going to be bad news, and it was.

How did you respond and what happened next?

I was so scared and frightened, and I just couldn’t believe it. Nothing had ever happened to me health-wise, so much so that I only carried catastrophic health insurance.

You saw a specialist a few days later, right?

I chose Dr. Cheung Wong because I had catered many events at his home and was very fond of him and his family. It so happens that Dr. Wong is the director of gynecologic-oncology at the UVM Medical Center in Burlington.

Burlington is not a big city and ovarian cancer is somewhat rare. Did you consider going to Dana-Farber Cancer Institute in Boston or Sloan Kettering in New York City for a second opinion?

BB Dr. Wong advised me to, but I did not for several reasons. I did not feel well enough to travel, and I understood my numbers would not change, and I had full confidence in my medical team here in Burlington.

I understand that you had a full hysterectomy and debulking surgery a few days later.

We moved very fast once I was diagnosed. Debulking is very highly skilled surgery done to cut out as much of the cancer as possible from all affected regions. Chemo kills what remains.

Ovarian Cancer
from an Oncologist’s Perspective

Dr. Cheung Wong, has been the director of gynecologic oncology at UVM Medical Center since 2003. Wong graduated from New York University School of Medicine completing his OB/GYN residency at Mount Sinai Medical Center in New York City and completed his fellowship in gynecologic oncology at Roswell Park Cancer Institute in Buffalo, New York.

Barbara Bardin has been Wong’s patient since 2012. Describing his experience treating Bardin, Wong said, “In all the years I have been practicing gynecologic oncology, I have been moved by the resiliency of the human spirit when one is confronted with the ravages of ovarian cancer. Barbara has faced her disease with a powerful will to live, managing each difficult phase with amazing courage. I wish we could do more.”

Wong wrote the following statement for Vermont Woman:

As a gynecologic oncologist, I diagnose and treat women with precancerous and cancerous conditions of the gynecologic tract, including the vulva, vagina, cervix, uterus, fallopian tubes, and ovaries. I evaluate patients in the office, prescribe chemotherapy, and perform oncologic surgeries.

My guiding principle as a physician is simple: treat every patient as your own family. As physicians, we need to listen to our patients and remember that every patient is unique; then—and only then—using our medical knowledge and surgical experience, can we, as physicians, best serve our patients. Gynecologic oncologic care at UVM Medical Center is a team approach: doctors, nurses, social workers, and physical therapists are just some of the vital members of this team.

The rate of ovarian cancer in the United States and in Vermont is similar, 11.5 and 11.3 per 100,00 women, respectively. Over 80 percent of women who present with ovarian cancer will have advanced stage cancer where the cancer has left the ovaries and spread to other parts of the body. Surgical treatment usually consists of removal of the uterus (hysterectomy), removal of the tubes and ovaries (bilateral salpingo-oophorectomy), and removal of as much of the cancer as possible (cytoreductive surgery or debulking). The chemotherapy drugs of choice are Paclitaxel and Carboplatin. New drugs such as antiangiogenic medications (Bevacizumab) and PARP inhibitors may provide promising outcomes for selected patients.

An estimated 80 percent of women who have been treated for ovarian cancer will develop a recurrence, and when ovarian cancer recurs, it is very difficult to cure. Consequently, despite advances in surgical technique and chemotherapy treatments, the five-year survival rate is only 15 to 40 percent. On the other hand, many women diagnosed with early stage ovarian cancer where the cancer is confined to the ovaries can be cured through surgical treatment alone, without chemotherapy or radiation therapy.

Unfortunately, less than 10 percent of women diagnosed with ovarian cancer are found to have Stage I. That is why it’s imperative that women be proactive about their health. Women should consult with their primary care doctors to see whether their family history warrants an evaluation in the Familial Cancer Program at UVM Medical Center. Recent studies suggest that genetics may contribute to a woman’s risk for ovarian cancer. Further, it is very important that if a woman has more than three months of nonspecific symptoms, such as abdominal pain, bloating, or difficulty eating, she should be evaluated by her medical provider. In most cases, she will not have ovarian cancer. However, if there is a more serious medical problem, it is best to treat it earlier rather than later.

Was that procedure successful?

Dr. Wong told me he got everything he could, but that it’s impossible to get it all.

So you began your recovery from the surgery through the fall and began chemo treatments over a three-week period in December, losing your hair.

I cut my hair very short before the treatments began so it wasn’t so difficult.

How was your state of mind at this point?

I was determined to beat this. I had the will to beat it back. I believed I could do it. I knew the odds. Still I believed I would be one of those who won this fight. In January 2013, my numbers went down to 19. I was thrilled and threw a party upstairs in Leunig’s for those who helped support me.

That was a terrific party—with a lot to celebrate. Did you have a pretty good spring and summer?

From January through the fall of 2013, I was OK. I did not feel entirely myself, but I was able to carry on my life pretty much as usual. But by October, the CA125 blood test revealed that my numbers had shot up, and I was told that my disease was now considered chronic. I had to go home and look up what chronic meant—which was that I would die of this disease. Then I knew, and it hit me really hard.

Did you start another round of chemo?

This chemo round was with different chemicals, attacking the disease in another way. Chemo treatments this time were harder to take. I never got sick from them, only felt lousy and very tired. Luckily, the chemo lab at the hospital is first rate, with a compassionate team of nurses.

Describe how your life was though 2014.

In the summer of 2014, my numbers increased again, and I underwent a third round of chemo, different chemicals again, different attack mode.

And in November 2014 what happened?

I was told by my doctors there was nothing more they could do except palliative care chemo treatments this time with Doxil, which I started.

What were your expectations?

That I would gain more time to live.

The treatments were really tough to take?

The treatments were awful, made me sick, and my numbers did not really improve that much. I felt like my flame was dimming.

You mean that your life was dimming?

That my life as I knew it, as I knew myself, was leaving.

Was your body changing?

I could actually feel a weird, prickly, creepy feeling in my abdomen area.

Weren’t you hospitalized for blood clots?

Yes. And then a few days later again for out-of-control blood pressure. The doctors brought both under control, but it was awful.

A couple of weeks ago what changed?

My abdominal area became increasingly bloated. I had a lot of pain. I could not keep food down and could hardly eat. I had a lot of trouble going to the bathroom. I think I am taking a turn for the worse. I cannot see how I can continue with chemo. I will know after my appointment with my doctor. [Long pause here.]

Do you have advice for our readers?

Get all the insurance you can afford. Do not wait to go to the doctor. Do not self-diagnose. You do not have the skills or the knowledge. Early diagnosis can mean saving your life. Ask for help. Don’t try to go it alone. Get a sense of humor, and don’t ever let go of it.

This has been so hard for your family and friends to see you go through this.

My family and friends have been my support, my lifeline. I am fortunate that I live in downtown Burlington—that I am so near my business and the hospital, and it’s convenient for friends and medical personnel to visit me. I have countless numbers of friends—a pal-base I call it. They stream in and out all day and night. They are always available, entertain me, cry with me, bring me stuff, take me to appointments, listen and make me laugh.

And your medical team?

The docs and nurses are readily available. I never have to wait for an answer or for help. That has given me peace of mind. Dr. Wong knows what I am thinking all the time.

What insights have you gained through this experience?

For the first time I can see myself through myself. I see me through my own eyes, and I like what I see. I’m no longer confused by what others think of me or how they see me. That no longer matters. It’s very freeing.

What is your philosophy about life and death, especially living with such difficult odds?

I love life, and it’s impossible for me to imagine myself not alive. I believe death is final. When the flame is out, it’s out. I am at peace with that belief. It may be easier to believe in the life hereafter or whatever, but that would not be true to myself.

Regrets?

Like Sinatra says in the song “I Did It My Way.” Regrets, sure, I’ve had a few, but too few to mention. Still everyone has a few things they would do differently.

Most of all I wish I spent more time with my family. I know everyone says that. But I mean it. What can be more important? Nothing.

Any mistakes worth mentioning?

None specifically. Except that many I made out of fear and because I would try to make the shoe fit, ignoring all the red flags. I paid a price every time both professionally and personally. I think it’s important to admit when you are wrong. Just say “Hey, I was wrong. I’m sorry.” Plus it feels good, like being on a featherbed!

What has been the most significant revelation since your diagnosis?

One of my biggest is that I allowed people to take advantage of me. I allowed it, no one else. I take full responsibility. I have that clarity now. I did encounter some unkind and mean ones along the way. They know who they are. To them I say “your welcome.” But those happy horse-shit days are over now!

What do you value in friendship the most?

Unconditional love. It’s hard, but that’s the goal. Period.

Is there more?

I value authenticity and integrity. The more exposed you make yourself, the more attracted I am to you, and I will be your friend forever. It’s not easy. So what. Everything in life is not puppies, balloons, and ice cream.

What will be the hardest for you in dealing with what lies ahead?

The most difficult decision will be to say good-bye to my brother Dave. We have been through so much together—our whole lives. He will be with me when the time comes to end my life. I am so honored to have him by my side to see me through this.

How will this happen?

I intend to take my own life. Thankfully, it is legal in sane Vermont under Act 39* the Death with Dignity Act. I intend to ride this life horse standing, but I have no intention of being trampled.

What will be the tipping point for this decision?

I’ll know. I just will.

Any further thoughts?

Life is a gift. Be all of who you are. Expose who you are. Be willing to really live.

On April 9, 2015, Barbara chose to become a resident at the Vermont Respite House where she will receive the best medical and comfort care.

“The Patient Choice and Control at End of Life Act (Act 39) provides Vermont residents with terminal disease the option to be prescribed a dose of medication to hasten the end of their life.

This option requires the participation of a Vermont physician. Act 39 was passed into law in 2013 by the Vermont General Assembly, and signed into law on May 20th, 2013. To date three Vermonters have chosen to utilize Act 39.”

For information: www.healthvermont.gov, 800-247-7421 and www.compassionandchoices.org, 800-247-7421

Ovarian Cancer: Facts, Treatments, and the Vermont Response

by Elayne Clift

April/May, 2015 issue. Go there..

Sue Gillis is the Publisher of Vermont Woman.