World Awareness Day for Ovarian Cancer - One Voice Closer

This year on Friday, May 8 marks the third anniversary of World Ovarian Cancer Day. It is dedicated to creating and raising awareness about ovarian cancer. On this day, ovarian cancer awareness organizations from across the world work together with a singular focus and message for ovarian cancer and its symptoms.

It's ironic that on the next day, Saturday, May 9, Mom and I will be participating (mom walking/me running) the Race for the Cure in Peoria in support of my cousin Laurie who was diagnosed with breast cancer earlier this year and underwent a mastectomy. As I have mentioned before, we have too much cancer in my family.

Thanks to the awareness of breast cancer and the early detection practices, cousin Laurie has a good prognosis and a long life ahead of her. I wish I could say the same for the awareness of Ovarian Cancer. We still have a long way to go in order to get it to the level where women will pay close attention to their bodies and become familiar with the symptoms AND be proactive about those subtle symptoms. That is what awareness is all about.

And we also need to push for a better Ovarian Cancer early detection/screening method, like a pap smear is to detect cervical cancer. I know it can happen and we need to keep encouraging those who are doing the research to KEEP GOING until they can nail down a procedure that works. There are women out there right now who have Ovarian Cancer and don't know it and WON'T know it for months. We can't let them go that long.

WHAT CAN YOU DO? Sign the pledge - and share it with others http://ovariancancerday.org/pledge/

I like their sound bite - "We are one voice closer to overcoming this disease."

Awareness is still the best defense against ovarian cancer, so add your voice and build one voice for every woman to overcome ovarian cancer.

Changing family history of ovarian cancer

Mom and Heather, September 2013

One of the ways you are supposed to determine your risk of ovarian cancer is to look at your family history. As of 2008, we had no history of ovarian cancer in our family.

Then my mom was diagnosed in 2009. So my history was changed.

My cousin Heather (relation on maternal side of the family; mom's brother Larry's daughter) was the first one of our/my generation to be diagnosed with ovarian cancer. She is only 42 years old.

And unfortunately, after a short break off of chemo, Heather is going back on again after her scan yesterday showed lesions on her liver, spleen and abdominal wall. And as of yesterday she was having to make some quick decisions about what course of treatment to take - Carboplatin, Avastin with either Taxol or Gemzar.

Mom's oncologist Dr. Porubcin suggested Gemzar but decided to put her on Doxil instead... and the Doxil has worked quite well for the last three years. The side effects have been minimal compared to Carbo/Taxol mix mom had when she was first diagnosed in 2009. She was very fortunate that her cancer did not make it to the tumor level. Small "fibers" of the cancer had attached itself onto the omentum and some lymph nodes in addition to mom's ovaries. The surgeon who performed the oophorectomy/hysterectomy said he had removed most of it and felt that she would have a good survival rate.

When Heather was diagnosed in 2013, she had a tumor the size of an orange on her ovary and was Stage III. With no family history of cancer how was Heather to even know what was going on in her body? It's the same ovarian cancer story you hear over and over again about the sneaky and subtle the symptoms of the disease.

I am coming to the conclusion that there is too much cancer in this family. So now we go from No-Family-History-of-Cancer to Family-History-of-Cancer and I try not to worry about how much that change in history is going to affect me or generations after me. I am somewhat relieved that I had a son and no daughters... but if and when my son has children, a daughter, some day... how will she be affected?

That is why we need an early detection method for ovarian cancer now. Cures and preventative measures are great, but if we had an early detection method, then ovarian cancer would be just as treatable as cervical cancer and breast cancer.

I don't know how to get there (early detection) except keep sharing my mom's story (and Heather's too) so that women will understand that cancer can happen to them too, regardless of family history. And keep advocating for an early detection method.

In the meantime - please keep my mom and Heather in your prayers.

Joan Lunden: Attitude of survival

Joan Lunden at the River Center

I had the privilege of hearing Joan Lunden speak at our local Gilda's Club luncheon the other day in Davenport at the River Center.

I knew Joan had been diagnosed with breast cancer (triple negative - a very aggressive form of breast cancer) last year but did not read any more about her treatment or prognosis.  Honestly, Joan looked FANTASTIC.

Midway through her talk I noticed that Joan had some of the same patterns in her life that my mom has had in her life. Joan was a caregiver to her mother, who suffered from Alzheimer's. My mom went through the same thing with her mother, my grandmother, Dolores who also suffered from Alzheimer's. Joan's mother died in 2013, and a year later Joan was diagnosed with breast cancer. My grandmother Dolores passed in 2008, and almost exactly a year later my mom was diagnosed with Ovarian Cancer in 2009.

And, just as my mom was surprised about her cancer diagnosis, Joan was surprised as well. Both had no family history of cancer. Joan said she has always been an advocate of healthy eating and being active - just like my mom. I have always considered my mom one of the healthiest, fit people I know - my mom was the Geneseo Jazzercise All-Star and has been going to the Jazzercise studio for years. I remember going to Jazzercise once or twice and I had a heck of a time keeping up. And that was 20 years ago.

I was surprised to hear Joan talk about feeling guilty over being diagnosed with breast cancer. She said she felt that somehow she must have done something wrong along the way. But Joan made a good point: don't let anything zap your attitude. She knew that she needed strength and energy to battle cancer, and she had to stay positive. My mom also knows that attitude is the key to battling cancer and I believe that my mom's positive attitude has enabled her overcome her cancer and keep it at bay.

Joan also talked about being your own patient advocate and being persistent in your health care. She made the analogy of being "shot out of a cannon" after she was diagnosed with cancer, and I couldn't agree more. After diagnosis, it is a whirlwind of information, opinions and treatment options. You have to first and foremost advocate for your own care and make the decision. No one else can make it for you.

The one thing that saved Joan's life: early detection. That is the one thing that we don't have for ovarian cancer - early detection and screenings. The standard of care for ovarian cancer has a long way to go. The best we can do is tell women to "pay attention to their bodies" and act on those "subtle symptoms." Education and awareness.

So until then, we have two stories of two women who want to be cancer survivors. Saying to yourself that you will "beat this no matter what" is the most important thing you can do for yourself, and having a positive mental attitude is the key.

CA 125 count, eye surgery...anniversary

Barb and Harry, mid 1960's

Today, April 6, is Harry and Barbs wedding anniversary! I can't remember if they were married in 1962 or 1963. I think my cousin Daryl was born in 62 and then they were married in 63. She is napping right now (we were up at 4:30 a.m. today for eye surgery!) so I will ask her when she wakes up.

Harry and Barb were quite the hip couple back in the day. If my father were still alive today they would have been married over 50 years.

Mom had her scheduled blood work done last week and it showed that her CA125 level went up slightly. I'm not thinking this is a big deal because her CA125 level has gone up and down by a point or two over the last couple of years. Of course I get excited when it goes down... but when it goes up a little it's a non issue...she doesn't have any other symptoms and is feeling good. Her next visit with Dr. Porubcin isn't until the end of May.

So today mom had eye surgery (left cataract) early this morning and everything went well. She has known for awhile that she needed cataract surgery, so since she is on a chemo break, now is the time. The procedure itself doesn't take that long...but we were at Trinity Unity Point for about 3 1/2 hours total time with the waiting and prepping with eye drops, etc. In about 4-6 weeks she should be noticing improvement in her sight. Dr. Wagle (SP?) said that in a couple of years mom will probably need her right eye done.

We had a nice Easter yesterday - mom sang in the choir at TWO church services... and then we went to brunch with two out of three boys and then my in-laws (Tom's brother and family). It was a nice day to be with family.

Angelina effect - can it lead a new cause for standard of care?

Family portrait - teal toes.

I am grateful for the Ovarian Cancer awareness that has been brought about by actress Angelina Jolie Pitt's medical choices and am grateful to her for sharing the concerns of ovarian and breast cancer after losing her mother and aunt to ovarian cancer. Angelina knew her increased risk and took her medical care into her own hands.

From Angelina's article that she wrote for the New York Times in May of 2013: "I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer," she wrote. "It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options."

I think the important thing to remember is that each individual has to weigh their own options, and that women need to have the options available to them. This is where we need a good standard of care not only for those who are at risk of developing cancer, but for those who have had no history of cancer in their family, and yet, are diagnosed with cancer well into Stage 3. Like my mom and my cousin Heather.

What would my mom have done differently had she been able to know her risk? For her, it wasn't good enough to keep a "close eye out for cancer." Her symptoms were symptoms of many other ailments. It was a process of ruling out one thing over another. WHAT IF Ovarian Cancer awareness had been more prevalent 6 years ago... or even 10 years ago? I remember when my mom was first diagnosed with Stage III Ovarian Cancer in March of 2009. Even then people were saying "At least we caught it."

Looking back now, that's not good enough.

There is not a good screening test for ovarian cancer yet... like the equivalent of a Pap smear, which detects pre-cancerous changes in the cervix. Or like a mammogram, which can catch breast cancer very early. Even the CA125 test has mixed results and is not a reliable indicator. It is something to watch, but it's not a definitive identifier of ovarian cancer.

So we have to rely on awareness... which is all fine and dandy,  but we are still at the same point we always have been - talking and sharing Ovarian Cancer symptoms and telling women to pay close attention to their bodies and talk to their doctor. Many organizations do great work on the awareness front. But that is still not enough.

We have to start moving in a direction of a better standard of care for all women where ovarian cancer is concerned - because all women can be at risk.

World Ovarian Cancer Day May 8

September is designated as Ovarian Cancer Awareness month, however there is another important day on the calendar that is about bringing awareness to Ovarian Cancer: World Ovarian Cancer Day on May 8. The event began in 2013 so it has a couple of years under it's belt.

We are fortunate in the Quad Cities area to have an active organization the NormaLeah Ovarian Cancer Foundation and there are many volunteers who are a part of the OCNA (Ovarian Cancer National Alliance) who are out in the community educating people about ovarian cancer symptoms and disease awareness.

I find surprising that we actually need to educate some physicians on the symptoms - and I'm not blaming or pointing the finger as the symptoms ARE similar in scope to some other ailments. But case in point, my mother had to be persistent in getting to the official diagnosis.

Unlike more common cancers, there are significant challenges as ovarian cancer has been largely overlooked and research has been underfunded to my understanding. Ovarian cancer symptoms are often misdiagnosed, as they can be confused with symptoms of other less severe illnesses, particularly gastrointestinal complaints, and the absence of an early detection test, and the resulting late diagnosis and poor prognosis.

This needs to turn around, and education and awareness are key. As I have been finding my way around, I have come to a conclusion that the standard of care needs to be raised - the current "standard of care" for ovarian cancer is surgery and chemotherapy... and that has remained unchanged for many years. The survival rate is not that great after diagnosis, mainly because it is diagnosed so late. So raising the standard of care for ovarian cancer to require some sort of screening test and an early detection standard in addition to educating each and every doctor in the United States about the subtle symptoms of Ovarian Cancer. I think that should do it.

And there are organizations such as NormaLeah and OCNA who are getting out there and talking to doctors as well as medical students about Ovarian Cancer. So the process has started.

Next time you are at the doctors office, mention Ovarian Cancer and ask what they know. Ask them if they include Ovarian Cancer in their list of diagnosis when a woman comes in with gastrointestinal issues but can't quite put their finger on it. That alone will make a difference.

Paying respects

Burnell's funeral procession of Allis Chalmers tractors. Photo
courtesy of Times, Ottawa. Doug Larson photog. 

My mom is from a small rural town in Illinois called Ransom. Last time I noticed the population was around 450 I think. Maybe less. It is the quintessential sleepy farm town. I spent a lot of summers in Ransom as a child...hanging out with Grandma and Grandpa McCann on the farm. I have good memories there and good memories of the people there.

A couple of weeks ago, Ransom lost one of their longstanding town members - Burnell Bergeson. The Bergeson family farm was north of Grandma and Grandpa McCanns farm. Burnell and Grandpa McCann were buds. After Grandpa died, Burnell and Sherry were the best and took care of Grandma and checked in on her a lot.

Once mom heard about Burnell I knew that she had to go to the visitation and funeral. I wanted to go as well because Burnell was one of the kindest people I ever met. Next to my grandpa - he was one of those few people who could talk to anyone at any time. One of my favorite stories of my grandpa was when he got tied up on the phone one evening and grandma could not figure out who he was talking to. About 20 minutes later grandpa hung up the phone and grandma asked "Well who was that Glenn?" My grandpa replied "I don't know it was a wrong number." Burnell was that type of guy too.

I know it was Burnell's funeral, but it was very endearing to me to see everyone so happy to see mom and tell her how good she looked. I think those are the kind of experiences that has seen her through those tough times when she was first diagnosed with cancer. Another testament to the power of prayer and positive thoughts. Ransom will always be mom's hometown and the people there will always be there to greet her with open arms...and that is the best healing remedy of all.