Monday, November 7, 2022

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here
 
Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 
 
 
Dee
 
Every Day is a Blessing! 
 

Friday, October 7, 2022

Guest post By Molly Lindquist: Another Cancerversary, Another Reason to Celebrate!

I am so pleased to be able to share with my readers this guest post by friend and advocate Molly Lindquist (@LindquistPDX). I recently spoke to Molly and Samira about Manta Cares. It offers helpful information, planners and coaching for not only gynecologic cancer survivors but all cancer survivors and their caregivers.  

ANOTHER CANCERVERSARY ANOTHER REASON TO CELEBRATE!

Next week is my 11-year cancerversary, which brings a mixture of feelings. I’m incredibly grateful to see another year. My daughters were just 3 and 5 years old at the time of my diagnosis, and I was so scared that I wouldn’t see them grow up. 


Now that they are teenagers, and my main job is annoying the heck out of them, that thought shifts further to the back of my mind.


But along with the gratitude comes the eternal question that never seems to dim with time: why me? 

 

Clearly there’s no easy answer to that one. My cells decided through some combination of genetics and environment (and bad behavior!) to mutate and grow into cancerous tumors. There’s nothing I can do to change that. While 11 years have passed since the day I heard, “You have cancer,” that doesn’t change the fact that the little “cancer devil” is always on my shoulder when any ache or pain pops up. Is it back? Or is this just a normal part of getting older? Is my life about to be derailed again? Or do I just need to pop some ibuprofen and accept that sometimes I can tweak my back just by sleeping on it funny?

 

While I’m not in the “cancer is a gift” camp, I do believe that we have control of how we react and channel our personal experiences, crappy as they may sometimes be. The major silver lining of my cancer experience has been the people I have been fortunate to meet along my journey; people who are taking their challenges and using them as a force for change. Recently, one of my favorite pay-it-forward inspirations has been my friend Samira. 


Samira was diagnosed young like I was, and like me, her life plans were derailed. Samira is a bio-engineer and healthcare product designer by profession. Even with her strong science background, her cancer diagnosis dropped her into the terrifying land of the unknown -- she describes it as going for a long hike without a map. To take control of this process, and stay organized, she created a planner for herself – an old-fashioned, paper planner – the simple tool this techie bio-engineer couldn’t find anywhere to help her stay organized and better communicate with her care team. When other patients, nurses and doctors saw her planner, they asked if they could share it with people in their communities, because they were certain it would be very useful. So, what started as a simple tool to help navigate her own breast cancer journey has turned into a company, Manta Cares

 

I have been lucky enough to join Samira on this new, Manta Cares adventure, and couldn’t be more proud to use my own experience to help make the cancer journey just a little bit easier for patients and caregivers. The goal of Manta Cares is to create tools for cancer patients and caregivers that we (and our loved ones!) were missing.

 

We recently launched Cancer Coaching with Dr. Maeve Baechler, a physician, coach and most importantly, a cancer survivor herself (Maeve is also on my pay-it-forward inspiration list!). As anyone with cancer knows, that diagnosis makes you rethink your entire life - dreams, goals, professional path - you name it, cancer impacts it! So Maeve helps coach people through this huge life change. I wish I had had a coach like Maeve 11 years ago (and grateful I get to utilize her advice and guidance now!).

 

We are also launching a monthly free resource to the Manta Cares community. Our first free resource is a Chemotherapy Checklist for Caregivers, with information about what to think about before your loved one starts chemo. There is also a free Caregiver Guide with tips and strategies to facilitate better communication with your loved one during this incredibly stressful cancer journey.

 

And we’ve only just started! More resources and tools will be rolling out over the coming months, so we hope you’ll keep in touch with us and share with anyone in your life who might be dealing with cancer, either as a patient or caregiver.

 

So as I prepare for my 11 year Cancerversary, I do so with a full heart. I know that I can never repay the kindness that has been shown to me over the years by my family, friends and even strangers, but I will continue to pay it forward for others on this rocky road. It is the only way I can turn my two bad lemons into lemonade (and yes, I will continue to chuckle at that joke for as long as I’m around to overshare it with you!).

by Molly Lindquist

 

Dee
Every Day is a Blessing!

Friday, August 26, 2022

Advocates Making a Difference

This week three women showed us all how to be advocates. One woman had her article published in a medical journal and two others shared their stories during a Facebook Live presentation. It makes me so happy to see ovarian cancer advocates highlight their experience in ways not available when I was first diagnosed.

Christine "Cissy" White, an ovarian cancer survivor has participated in a number of #gyncsm chats and is an active ovarian cancer advocate on Twitter and other social media platforms. She was diagnosed in 2019 and wrote the Clinical Trial Treatment Train for the NEJM's Evidence Patient Platform. It was published on August 23, 2022.  https://evidence.nejm.org/doi/10.1056/EVIDpp2200198

The article is an honest look at what it is like participating in a clinical trial. Cissy took part in the ATHENA trial and a trial of REGN4018 alone or in combo with Cemiplimab. She faces decisions many women diagnosed with recurrent ovarian cancer face daily.  Those who conduct and design trials should read and consider experiences like hers when working with patients.

Ovarian cancer survivors and advocates, Kimberly D. Richardson and Kimberly Simmons Emory share their stories and experience with cancer in a Foundation for Women's Cancer Facebook/ Zoom discussion with gynecologic oncologist Dineo Khabele. Dr Khabele joined the #gyncsm community in 2021 to chat about Disparities in Gyn Cancer Diagnosis and Treatment.  Kimberly Richardson, a 10 year survivor,  joined the #gyncsm community in 2020 and shared how to Read a Scientific Poster. I met Kimberly Emory, a 16 year survivor, in 2017 during a Patient Leadership Council meeting in Dallas in 2017. 

You may watch  How to Be Your Best Self-Advocate at https://www.facebook.com/100064784164039/videos/1469632956884193. Take the time to listen to this discussion which includes symptom awareness, communication with your health care provider, genetic testing,  risk, etc.  What can we do raise awareness of ovarian cancer and offer support to women of color?

Thank you Cissy and the "Kim Squared " for everything you do to raise awareness and support women diagnosed with ovarian cancer. 

Dee 

Every Day is a Blessing!

Sunday, August 14, 2022

Thinking about Rest

Life has gotten busy the past few weeks and I realized that I have not posted to this blog in way too long.

Another survivor, Christine "Cissy" White, shared a blog post she wrote on LinkedIn using a writing prompt from Laura Davis. I loved Cissy's post. I thought maybe that was just what I need, a prompt to spark my writing.I decided to use the same prompt Cissy used.

 

Rest is not always easy.

At the beginning of each year I look at what advocacy activities I have planned for the year ahead and decide what large projects I would continue with. I ask myself if the activity brings me joy.  I know I sound like Marie Kondo and her advice about getting rid of clutter. For me that process worked well until recently. I started receiving special requests to help with clinical trial design, be a part of an advisory board and  review grants. As a cancer research advocate in what is considered a rare cancer,  I felt compelled to be involved in these opportunities. If I said "No" I would miss out on sharing my story and raising the issues that are important for women with gynecologic cancers. Was I letting myself and those who lost their lives to ovarian cancer down by not participating?  

Since Covid many events, symposiums, presentations were held virtually.The fact that travel costs were non-existent took funding my trips out of the decision making process. This just made things harder since I could take part from home. I knew I couldn't say yes to everything or I would burn out. I needed to look after myself.

Beginning in 2022, I started blocking out weeks at a time for family and friends.  I learned to turn down opportunities. But I did more than that. I decided to look at these opportunities as not opportunities for myself but for others. Every time I turned down an opportunity, I recommended another advocate or survivor who could step into that role. It is important that we advocates support each other. Now I can really rest and know that other patient/survivor voices are being heard.

When I rest... I feel calmer. I have more energy to do the advocacy work I am passionate about and I have time for my family and hobbies. 

Sometimes when I rest, I sketch or paint.

 


Dee

Every Day is a Blessing!

 

Thursday, July 21, 2022

Parallels in Life

As many of you may remember, I took up the sport of Dog Agility after my recurrence. My dog, Amber, who we believe to be part Jack Russell was full of energy and needed an outlet for all the energy. At the end of puppy obedience class, the instructors, Joe and Rebecca, put out some agility obstacles. Amber ran right through the tunnel. She looked like she would be great at agility. But I wasn't sure if I was ready to start something new. I just had a recurrence the year before would I get started and have to stop for another recurrence? Did I have the energy to learn a new sport? I was experiencing chemo-brain, would that impact remembering the course layout?   For those who aren't familiar with agility,  handlers move around the course directing their dog to take different obstacles. Some handlers can work at a distance from their dog and the obstacles and others like myself need to run the course as the dog runs over , around, on top of and through the obstacles. 

At the same time I came up with reasons why I shouldn't try agility, I thought that maybe something unrelated to cancer would help me recover from the past few years where my life was laser-focused on cancer and treatment. Maybe I needed an outlet from cancer as much as Amber needed an outlet for her high level of energy. 

I know that taking part in agility is a choice I could make and having cancer was not my choice. But there are parallels in how I approached agility and how one could approach cancer treatment.

Amber and I took lessons for a number of years before our first competition. For one piece of equipment the teeter, which is like a see-saw, the dog had to run up to the middle and down the other end causing it to drop to the ground. When other dogs ran the teeter it made a thumping sound when it hit the ground. Amber who does not like loud noises wanted nothing to do with the teeter. If the obstacle didn't move - like the dog walk or A-frame she had no issues.  We slowly trained with it to overcome her fear. I would give her treats to run up to the mid point. Then I would give her treats as I controlled the decent with my hand. I needed her to trust me that it was OK. It took us almost a year for Amber to not hesitate running the teeter. Finally she felt comfortable



When I started my initial treatment I was fearful of how treatment would affect me. How long would it take me to recover from surgery? How would I be affected by the chemotherapy treatments? Would I be tired? Would I feel nauseous and vomit? Would I have bone pain or neuropathy?  I wasn't comfortable with what laid ahead. My chemo nurses and gyn oncs walking me through the process, providing me the necessary nausea medications, answering my questions while assuring me along the way. Did I want to stop after  6 initial treatments? I sure did. But I trusted that the way to ensure the best results was for me to have three more cycles.I felt comfortable with what I had to face.

As we got closer to entering competition we went to a few trials just to scope out the routine of crating with other dogs, signing in, getting to the line on time and getting measured. I volunteered to work the rings so I would see how things worked.  Amber and I did the best we could to prepare for our first competition. 



After I finished my initial treatment, I went back to work. I learned more about ovarian cancer, how to be empowered to make a difference and started volunteering with my local ovarian cancer non-profits so I could be on top of ovarian cancer treatment. I was preparing for whatever the future held for me.

Our first competition and those that followed were not uneventful. I had to deal with different occurrences in the ring. There was the time the helicopter flew over the outside course and Amber hid in the tunnel and would not come out. Or the time she got to the top of the A frame and just stood there watching the dog in the ring next to us.  We were certainly over the course time on that run. Or when chutes were used in competition and she tried to enter the obstacle through the closed cloth end. Or there were the many times she got on the table and then off to smell the cone with the obstacle number on it. 

But there were times when everything went right. We Q'd. We had no faults and finished below course time. Amber even qualified for a few titles. 


When I recurred I was prepared for part of the process but as in agility I had to deal with a number of things. I had an  allergic reaction to carboplatin and ended up in the hospital. I was upset I had lost my best choice to get me back in remission, carboplatin. I had to postpone treatments when my platelets were low. The additional cycles of taxol made my neuropathy worse and caused my toe nails to lift from their bed.  But I dealt with each thing as it came my way. It was not always easy and not without shedding some tears but I did finish treatment.

 An agility friend shared this on Facebook. While written for the agility community I see parallels with what cancer patients experience.

" maybe we ought to take a step back and look at, well, most of us who are there achieving things you can’t see on paper. Those who gather the courage to step to the line for the first time. Who put their embarrassing moments behind them and then do it again. Those who struggle to cope with their dog’s stresses and their own anxieties, yet come to understand and accept them and get back out there again anyway. Those who, little by little, find ways to improve. To celebrate the first time their dog completes a course, or allows a rear cross, or pays no attention to the judge. Or even the first time they didn’t get lost on the course.

What really, truly matters aren’t the letters or a piece of parchment paper. It’s the memories we make.
 
We haven't competed in agility in over a year due to Amber's health issues including her recent diagnosis with Cushings disease. We miss the camaraderie of the other dog and handler teams and the fun times running the courses. But we are happy to celebrate her 12th birthday this week. 

 

 
Dee
Every Day is a Blessing!

Wednesday, June 15, 2022

News from #ASCO22 - Part 6 News that Caught My Eye in Tweets

Palliative Care

Using Claims-based Data 

 

Sarcoma research

 Clinical trials

Cascade Testing and ovarian cancer

Rare cancer treatments

 

Thanks for joining me as I reviewed ASCO research. I hope to see you at ASCO next year. 

Dee

Every Day is a Blessing!

Tuesday, June 14, 2022

News from #ASCO22 Part 5 - Case Studies of Endometrial Cancer

This session was a case based discussion titled Controversies and Considerations in Adjuvant Advanced Endoemterial Cancer. 

Cases were presented and questions asked of the panel which included a patient advocate, @AdrienneEcana.

Tomorrow catch my last post from ASCO. It included varied Tweets of studies from the meeting that were not necessarily a part of the sessions I viewed.

 

Dee

Every Day is a Blessing!