Saturday, January 16, 2021

It's All About Waiting

My journey with cancer has included a lot of waiting. 

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I waited to have CT scans. I waited for CT results. I waited for CA-125 results. Twice, I waited to have chemotherapy when my platelets were low. I waited to have my port flushed. I waited to see my gyn onc. I waited for my genetic test results.You would think by now I should be an expert at waiting. 

I am not. 

Ever since they mentioned a vaccine for COVID-19 was being developed I have been waiting. I learned as much as I could about mRNA vaccines. I learned how the Moderna vaccine differs from the Pfizer vaccine and how the potential J&J vaccine differs from others.

In December, I filled out a screening questionnaire to be in a clinical trial for a COVID vaccine. I've participated in a number of clinical trials so I felt comfortable going that route. I checked all the right boxes and received an email regarding the location for an interview for the trial. I waited six days and received an email saying that all the trial slots were filled. Back to waiting.

When NJ opened a site to pre-register for the vaccine. I signed up within 24 hours of the site going live. But so did over 450,000 others based on the governor's Tweet. 

On January 14th, my state opened up vaccine eligibility for those over the age of 65. Hurrah ! I was now eligible for an appointment for the vaccine. I went on the state site listing vaccination distribution locations. I was happy to see eight locations in my county and even more a short drive from my home in the 3 neighboring counties. I had an anaphylactic response to a chemotherapy drug I was given. So I wanted to go to a location capable of treating me if I had a reaction or one not far from a hospital.  Every single one of the locations had no appointments available. 

As disappointed I was being unable to schedule a shot, I thought about what I had read on NJ.com.  NJ has been receiving 100,000 vaccines per week. That means that unless that number allotted to NJ increases it, will take more than a month for the first day registrants ( of which I was one) to be scheduled.

Today, I  registered for an appointment to receive the vaccine through the health care system affiliated with my cancer center. No appointments available at this time but I am in the queue.  I am hopeful that by Spring I will get the vaccine.

In the mean time, I'll continue to wait, wear a mask, wash my hands and social distance.

Dee

Every Day is a Blessing! Even if I am waiting. 



Saturday, January 2, 2021

Uncharted Waters

When I look back at the Jan 2, 2020 blog post, I see how glad I was to be starting a new decade and beginning another year of cancer survivorship. In that post, I wrote about my aspirations for the year, which included practicing my watercolor painting and yoga, visiting Maine, going kayaking, building a better bond with my dog and stepping away from social media to meet with friends in person. 

And then the Covid-19 pandemic happened.

I think we could all agree that we just finished a year that took us into uncharted waters. We had to change how we did so many things due to the COVID 19 virus. We kept socially distanced, wore masks and didn't visit others in their homes. We searched for toilet paper, hand sanitizer and Clorox wipes, washed our hands for 20 seconds and refrained from shaking hands. We had almost everything from dog food to light bulbs to groceries delivered to our home. Being online was more than browsing Pinterest, Facebook or writing e-mails. We visited with family and friends via Zoom, and attended virtual conferences. 

All this meant some of my aspirations weren't going to even be able to be attempted. 

 I was home pretty much 24 hours a day, so to stay physically healthy I needed to remain active. It helped to have my dog Amber to walk outside a few times a day but I decided against going to agility class except for the last few classes of the year where we wore mask including when we were running our dog and stayed 6 feet apart . We attended one agility trial in February before the shutdown began. As for yoga, well that switched to online Zoom classes.There was no kayaking and my social media use went up instead of down and now I only spoke to friends on the phone or video chat.

After returning from a conference in Texas in January, I traveled no further than 50 miles from my home. During one two month period the furthest I drove from my home was 7 miles. Needless to say I never made it to Maine nor did we go on the family vacation we had planned the year before. 

Being home meant I did get a chance to do more art creations so I was able to fulfill that aspiration.  I even registered for a free weekly online course through the Princeton Art Museum, too.







As I start 2021, I will continue to wear a mask, stay 6 feet apart and wash my hands.  And I will patiently wait to receive the COVID Vaccine.

When this the pandemic is under control,  I aspire to make a trip to Maine and trips to see family in the US and abroad. In the mean time, I'll create more art, when weather permits I'll spend time outside with my dog trying to keep healthy and I will continue to advocate for cancer research with an additional focus on cancer treatment equity.

Dee

Every Day is a Blessing!

Wednesday, December 30, 2020

Lucky 13

Chad A.E. Heathcott - Graphic/Web Designer | Lucky 13, Lucky number 13,  Luck tattoo
chadheathcott.com

For me, 13 is a lucky number. I lived for over thirty years in a home with an address number of 13. And today, I celebrate writing this blog, all 1147 posts, over the past 13 years. 

As I approached this blogging anniversary I admit I have been thinking that it may be time to stop blogging. There have been many times over the past year when I had writer's block. I just couldn't come up with an idea that I thought would interest my readers or provide any insight into living and surviving ovarian cancer. 

Being so many years out of treatment, I was starting to feel that my experience was no longer relevant to women who now have options to use Bevacizumab or Parp Inhibitors as maintenance therapies. I could read about the different types of therapies but I never took any maintenance therapy. This year women are struggled not only with a cancer diagnosis but having treatment during Covid -19.  I did go for my annual cancer center visit in September but my appointment was never delayed or impacted in any way by COVID 19. 

Then a few things happened. 

I have had the opportunity to speak to two women on a monthly basis since July as a Cancer Hope Network volunteer. (I've been a CHN volunteer for over 10 years now.) While I can't share their stories, I will share that when I called them last week to wish them a Merry Christmas,  one had good news because of good scan results while the other had not such good news.  Yet both were glad I called so they could share their news. Both thanked me for listening and being available to answer their questions.

Then a women diagnosed with ovarian cancer reached out to me via direct message on Twitter. I answered a few of her questions and said I have written a blog for a number of years if she would like to read it and shared the link with her.  A few days later I got another DM from her and she commented on how reading a few posts were so helpful.

Lastly,  a fellow cancer advocate commented on my previous post "Stay the Course". She said "So often we think we have to do something huge or make sweeping changes. Sometimes, "staying the course" is enough. " 

So I will do just that.  I will stay the course and continue to write this blog in the hopes that I reach just one woman.

May all my readers have a Happy and Healthy and Safe 2021 !

Dee

Every Day is a Blessing.

Friday, December 25, 2020

Reflections

2020 was a different type of year that is for sure. The last trip I took was to Houston in January to give a talk at the NRG Semi-Annual Meeting. So many other meetings that should have been in person, Chicago, Washington DC, Rhode Island and others became virtual due to Covid-19. Family vacations were cancelled and our home was the safe place to be.

As I decorated the Christmas tree with ornaments from past travels, the memories provided me a way of revisiting each and every location.  Enjoy this short trip to just a few of the places I've been lucky enough to visit as my Holiday Gift to you. 

Zion National Park

San Francisco

Muir Woods

Mount Vernon

Mt Rushmore

Kansas
Yellowstone National Park


DisneyWorld

North Carolina

New Zealand

Alaska

Badlands National Park

Australia

Portugal

May this holiday season bring you good memories, joy and hope for the future. 

 Dee

Every Day is a Blessing! 











Friday, December 18, 2020

Stay the Course

 A few years ago, shortly after moving into my community I took part in an art class with Dar James, artist and book illustrator.  She taught us a painting technique and set us free to be creative. When we finished the painting, she asked us to come up with a thought or mantra we could write on the painting. I was about 3 years out from my ovarian cancer recurrence. At the time, I was anxious about another recurrence. I was nervous about every time my abdomen felt uncomfortable or I felt full or I had a headache. A wise person told me that if I am doing everything I can - exercising, eating well  and going to my follow-up doctor's appointments I am doing my best. So to remind myself to keep doing what I need to stay healthy, I chose the phrase, "Stay the Course". 



I was looking at the painting the other day and I realized that "Stay the Course"  is still appropriate for many reasons. I've continued to try my best to stay healthy. I walk, do yoga and Jazzercise and try to eat healthy.  I saw my dermatologist in June.  My appointment with my advance practice nurse at my cancer center was in September, when I also had my CA-125 check. I saw my eye doctor in October along with having my annual mammogram. And I recently had my annual wellness check-up with my PCP.

But this year I needed to do more. I need to stay the course until I receive a vaccine for Covid-19. And yes, I have read the study results from the Pfizer vaccine trial and have read about how the vaccine is made and the various components. I was actually happy to see lipid nanoparticles being use since I had spoken to a researcher at ASCO in  2019 about using those particles to deliver cancer treatments .  Even having had an anaphylactic reaction to carboplatin, I am comfortable taking the vaccine. I know that in this day an age where we get packages overnight and can find information at our fingertips waiting is not easy. But I will have to stay the course a bit longer.

So in the mean time, I will continue to wear a mask. I actually have masks in assorted colors and styles to choose from. I will continue to carry hand sanitizer with me and I will continue to wash my hands more frequently while avoiding touching my eyes and face. I will continue to avoid large crowds - even if the group is outside. If I am in a store I will continue to change directions to avoid people who may be closer than six feet.  I will continue to avoid eating inside at restaurants.

 I'll share my experience with you when I actually am able to get the vaccine. But in the mean time, I hope you will stay the course with me.

 

Dee

Every Day is a Blessing!

 


Monday, November 23, 2020

Thankful

In years past we have traveled to spend time with family and friends on Thanksgiving. We've celebrated  in Georgia, Alabama, Virginia and Kentucky. And last year, we hosted dinner in our home.Oh how I enjoy the smell of turkey roasting in the oven.

This year we had planned to gather in DisneyWorld and celebrate the holiday with our daughter and son and their families.  But with the risk of Covid 19 high and quarantine restrictions in place, staying home is the best choice for us. This year will be different for sure. Just Nick and I and the dogs intensely watching us eat turkey and stuffing and sweet potatoes.  When I was in cancer treatment and unable to make a lot of the family gatherings, I was sad but I made it through. I expect we will all make it work from a distance this year too. And I know when we do get together and give each other hugs, it will be wonderful! 

Covid has changed a lot in 2020 - no hugs, no house visitors, no trips to far away places.  But the one thing Covid-19 can not change is how much I am thankful for this year.

My husband - My rock, best friend and a wonderful caregiver.

My daughter, son-in-law and grandsons -  You make me smile even though you live half way around the world.  It was a blessing for you to stay with us for 5 months earlier this year (Thanks to Covid19.).

My son and daughter-in-law - You are amazing. Without hesitation you opened your hearts and home to another dog, Ziti, who found you as she wandered through your neighborhood. She may miss her puppies but she has a whole new wonderful family. 

Family members and friends too numerous to mention by name. Your love and support  - phone calls and texts - are a blessing to me.

My fellow cancer survivors and advocates - You inspire me and together we can make a difference in the lives of cancer patients and survivors.

My dog, Amber - She is always ready to share her unconditional love and loves to jump and weave. Walter, the pug -You can make me smile just by the tilt of your head. 

Skype, Zoom, Facebook Messenger -  Platforms that allow us in numerous states and around the world to spend some time together this holiday.

And as with every year for the past fifteen, I am especially thankful for...
the doctors, nurses and social workers at Rutgers Cancer Institute of NJ. I would not be writing this if not for the excellent care you provided and continue to provide me. 
 
 




I will end this post as I usually do - Every Day is a Blessing!

Dee
 
 


 

Friday, October 30, 2020

Catching Up On All Things Advocacy

Well, were did the time go? It is over a month since my last blog post. I'm OK and plugging along.

It appears that being home most of the time - trying to reduce my risk of COVID -19 has not meant  less advocacy work. In fact,  I think that I am busier than normal. I had to turn down two projects for November and December so I don't fall behind in projects I have already committed to. 

I had a pretty good September which is Ovarian Cancer Awareness Month. I formed a team to walk for the Kaleidoscope Of Hope Ovarian Cancer Foundation and raise funds for ovarian cancer research, virtually of course. My daughter and niece, joined me as members of team Quarantine Fifteen. I chose that name because I celebrated 15 years as an ovarian cancer survivor this year and 2020 is the year of the COVID-19 quarantine. We raised over $500. I walked my 5K with two other survivors at a park in Allentown, NJ. How I wish we could have been on the boardwalk in Bradley Beach looking out at the ocean.Hoping next year will have us back at the Jersey Shore.

For the first time ever, I was able to attend the OCRA Ovarian Cancer Conference (Sept 29-Oct 2). It was virtual this year due to COVID-19 but I still had a great time and learned new information.  I was so excited to spend some time with my survivor friends. A group of us - many who had been ACOR listserve users - all met one morning of the conference in the virtual lobby to catch up and present the Big Girl Panty award.  

Here are three examples of the excellent presentations from the Conference.

Learning about rare ovarian cancer from Dr  Gershenson

Learning about PARP inhibitors from Dr . Matulonis

Racial Disparities in Ovarian Cancer with Dr Khabele

On October 16th I took part in the online celebration of the Cure Ovarian Cancer Heroes Award. I was so excited to celebrate with two advocates I have know for a number of years and a researcher I had met at the ASCO Annual Meeting.

 Congratulations, Andrea, Robin and Dr Deb.

 I rounded out October with two Scientific Review Board meetings, an ASCO Clinical Practice Guideline Committee meeting, a Cancer Community Advocacy Board , a planning meeting for a great November 11th #gyncsm chat on PARP inhibitors and an invitation ( which I accepted) to be on the advisory board of an NCI trial on understanding and reducing racial  disparities in ovarian cancer treatment and survival.  

Over the past few months I have become pretty adept at taking part in discussions on WebX platforms as well as Zoom but I really would love to be able to give some in-person hugs.

Stay well and enjoy the color of the world around you.

Dee

Every Day is a blessing!