Thursday, May 30, 2013

Ovarian Cancer National Alliance advocates for cancer patients

The Ovarian Cancer National Alliance is a very active organization who provides a collective voice about not only advocating for Ovarian Cancer research, but testing guidelines, out-of-pocket expenses, drug shortages, Medicare coverage and providing more educational and awareness programs.

They have recently worked very hard to make sure that Ovarian Cancer research stays in the fiscal budget, and through the web site have provided a link where people can look up to see if their congress-person supported funding or not.

If your senate or congress person supported the measure their name will show up along with a short thank-you note that you can send (already written!) to them via email. I think it is appropriate to also thank the OCNA for their ongoing crusade to support and advocate for people who have cancer. Having cancer is not only a rude awakening, but the other things that go along with it (insurance, drug costs, treatments) are mind-boggling and many times I have turned to someone there for help and/or clarification.

In my area, Representative Cheri Bustos supported Ovarian Cancer research for FY2014. She has a healthcare background and I'm sure is well versed on funding measures. I also know that she has a difficult job in voting to fund many things, and appreciate her vote of confidence for Ovarian Cancer research.

Wednesday, May 29, 2013

Two cancer survivors in the family

Mom and I traveled to Ottawa over the weekend for a baby shower... my cousin Alaina is now a grandmother (and hence we will all follow someday) to a little baby boy, Rayland. In some ways it doesn't seem like our children should be old enough to have their own children. I have a hard time picturing Travis (the father) much older than the age of 10. The same could be said for my own son - I will perpetually have him in my mind at the age of 4 - the fun time when he was too young for school and full of imagination.

ovarian cancer chemotherapy
Mom and Heather
It was a nice day for a family gathering and we were able to catch up with people that we haven't seen in awhile. Mom and I were able to talk to cousin Heather (daughter of her brother Larry), who was diagnosed with ovarian cancer back in February. Her symptoms were the same as mom's - bloating in the abdomen. After going through a scan the doctors discovered a tumor on her ovary about the size of a softball. Heather had a tumor removed along with her ovaries, uterus and omentum. Right now she is going through aggressive chemotherapy.

For all that she has been through in the span of three months she looks great and her spirits are good. Mom made Heather a teal quilt - and she was very appreciative as she says that she is cold all the time and really feels it when she is doing her chemo treatment. Everyone is keeping Heather in prayers for a full recovery.

Mom's BRCA genetic test results will be ready in another week. Dr. Porubcin (mom's oncologist) felt that the test was a good thing since now we have a family member on the maternal side who developed cancer.

Tuesday, May 14, 2013

Angelina Jolie, BRCA mutation and reality...

In a NY Times Op Ed, Angelina Jolie announced that she underwent a double mastectomy to reduce her risk of cancer. Her mother had ovarian cancer and it was discovered that she carried the faulty BRCA1 gene mutation, which increased Angelina's chances of having breast and ovarian cancer.

I may be in the same boat once mom finds out if she has the gene mutation. She was told that there is an increased chance that she may be a BRCA carrier now that another family member was diagnosed with ovarian cancer. Mom had the consultation last week and had the test done on Monday. It will take a few weeks to hear about the results.

I have decided not to worry about the results until the results are known. But the reality is, now after reading Ms. Jolie's editorial, that I may have to look at preventative measures, because I do know that I do not want to go through chemotherapy and have to live my life with cancer in my body. My mom has done a great job at living with cancer, and I feel that she will live for many more years and be able to enjoy great-grandchildren someday. But cancer has also taken its toll and has at times made my mom feel powerless against the disease. At least in some way, once the test results are known, I can put some power back in our hands to prevent my chances of developing cancer down the road.

I know now that the ovarian cancer discussion will move to the forefront because of Angelina sharing her experience... and maybe more people will be motivated to find an early detection test or better yet a sure-fire cure. Experiences are worth sharing - and I have learned from other bloggers and ovarian cancer survivors that the more we talk, the better the chance for others.

Wednesday, May 8, 2013

Ovarian Cancer Awareness Day May 8

Just as good as the month of September (Ovarian Cancer Awareness Month) is now May 8th, World Ovarian Cancer Day. Many organizations blasted out information about Ovarian Cancer today and the disease, symptoms and survivors who have conquered it all. The stories were amazing and my mom belongs right there with all of them.

The statistics are out there, and women are being diagnosed with Ovarian Cancer more than ever. Why? I'm still perplexed at how cancer develops, even in the healthiest of individuals. Either something is wrong in the environment or we are doing something bad to our bodies that we don't know about. Of most importance is having an early detection test available. You may know of your risk factors, but having an early detection test can only help prevent it from getting out of control.

The web site has a great outline of key facts beyond being aware of your body and the symptoms. The most important point being: All women are at risk of ovarian cancer. Doesn't matter if your family has a history of cancer or not.

Monday, May 6, 2013

5-Year pin!

Connie, Lyn, Mom, Phyllis & Ed
Mom received her five-year volunteer pin at the Hammond-Henry Hospital Banquet on Friday night. The event was at Lavender Crest Winery outside of Colona - a very nice place and the committee did a great job of organizing the festivities. It was a Vegas-themed night and mom had a good run at the roulette wheel before she lost it all on a roll. Her friends Connie and Phyllis also received their 5-year pins as well.

This week mom is going to meet with the consultant to talk about genetic testing to see if she is carrying the BRCA gene. I don't know how fast the turnaround is but that is what this session is about - getting more information.