Tuesday, October 15, 2019

A Multitude of Feelings

September came to an end at here we are at almost the midpoint of October. I had been thinking about this post for quite a long time now but was unsure of how to even begin.

In a book I was reading by Elizabeth Berg one of the characters stated she had a multitude of feelings and I thought to myself that is just what I need to call my post about September.

September brings a multitude of feelings to me. I love the Fall so the crisp cooler air is wonderful.  The September of 2005 I was just getting my head around being diagnosed with stage 3b ovarian cancer. I was in 2nd / 3rd cycle of chemotherapy and I remember the windows being open and hearing kids outside playing while I rested.

September also brings out the teal ribbons and walks and other events to raise awareness of ovarian cancer. I have seen an increase in the number of buildings that turn teal so many times during September and that makes me happy.

 At one event I to took part in I told a story about how the support group at my cancer center started and I felt proud to be a part of exactly the type of support other women diagnosed with ovarian cancer need. I was so happy to talk about my gyn oncs who spearheaded my advocacy work by pointing me toward the LiveSTRONG organization.  But during the talk I also mentioned my sister who died from breast cancer in 1995. Right as I said those words I knew I was tearing up.  I had to stop take a big deep breath and continue. Yes,  all these years later I still miss picking up the phone and talking to her.

At the final KOH walk, while walking along the Jersey shore boardwalk I was overwhelmed by the fact that here it was 2019 and I was alive. I had beat the odds and in the 35% of women diagnosed with late stage ovarian cancer who lived 5 years. And I felt grateful for my family and friends and especially my "teal sisters"  who walk this cancer journey with me. They understand how years later I can still be anxious and even scared when I need bloodwork or have a doctor visit. Sure I deal with neuropathy , digestive issues and chemo brain but gosh darn it I am still here!

I was glad going into the last event a fundraiser to support research in Ovarian Cancer at my cancer center. This one was run by my friends at Graceful Hope Foundation. Seeing the support and old friends was wonderful. But there is always that time during the dinner when we have to remember those women who died due to ovarian cancer . And they mentioned Dawn. And it hit me again I shook my head up and down and teared up as I thought we lost yet another wonderful mother , sister and friend . It is sad to think back to all the women brought together by this disease who were my friends -  Gail, Lois, Patty, Sharon, Pam, Rita Kay, Carole, Janice, Corinne, Linda Ellen, Jayne and many more.

Even after so many years I experience a multitude of feelings in September.

Every Day is a Blessing!

Tuesday, October 1, 2019

ASCO Advocacy Summit

I am a patient advocate member of ASCO and last week I joined oncologists and members of ASCO in Washington, DC as part of the ASCO Advocacy Summit. We had training  sessions on Wednesday and on Thursday we visited our Senators and members of the House of Representatives.
ASCO On the Hill.

I was paired with Dr Charles Miller from Hawaii so we visited the offices of both NJ and Hawaii legislators.

Visiting with Congressman Case (Hawaii)
The bills we asked our legislators to support:
HR 913 Clinical Treatment Act - We stressed the importance of participation by Medicaid patients in clinical trials and the stumbling blocks to participation they currently experience. Meidcaid insures one-fifth of the US population. Yet only 12 states currently allow Medicaid coverage of clinical trial routine care. In those states that cover clinical trials there has been a minimal effect on overall care costs. We asked that patients on Medicaid receive coverage for routine care when enrolled in a clinical trial.

HR 3107  Improving Senior Timely Access to Care Act - Seniors on Medicare Advantage plans are  experiencing delays in  medically necessary testing and treatment due to slow prior authorization policies. Denials are sent without explanations of the determination. We asked that a uniform e- authorization be created for Seniors on these plans and that an explanation of denial be provided so that timely access to care can take place.

HR 2279 / S 2546 Safe Step Act -  Step therapy protocols requires patients to try and fail medications suggested by the payer before the medication prescribed by the doctor can be used Allowing this process in cancer care would delay access to the best treatment for cancer patients and also increase side effects and reduce quality of life. I was happy to learn that Rep Bonnie Watson Coleman (NJ)  has already co-sponsored the House Bill. 

While I did not speak to Senators Booker, Menendez or Congresswoman Watson Coleman in person their aides were very interested in hearing how these bills would effect the people in New Jersey.

You may not be able to travel to DC to speak to your legislators but if any of these bills are important to you it is easy to reach out to your Senators or Congressmen via e-mail or phone and ask them to support the bills that are important to you.

Thank you ASCO for allowing me to be the voice of cancer patients in NJ.

Every Day is a Blessing!