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PET Scans:  Different Now

3/25/2016

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This week I have been full of anxiety.  It was the last week before Spring Break, which officially started today.   I kicked it off with a stent exchange surgery and my PET scan, both of which I get to do every three months.  It seems like the scanxiety started a little earlier this time for me, I took a minute to reflect on my last PET scan day which I wrote about here..  It seems like the scanxiety is creeping in sooner and sooner each time I have a scan.  I think that is because a PET scan used to mean that I could find out I was cancer free, that is not the case now.  Without a curative plan in place, when I go in for a PET scan I don't have the luxury of thinking that my scan might show me the cancer is gone.  A PET scan is just different now.

A PET scan when living life with cancer is not like a normal scan. I don't expect to get a call from my doctor saying "we are all clear". In fact the best I am hoping for as I wait for this scan is that when the Dr calls he will be able to tell me "you still only have seven spots and they haven't grown". That's right. Even when I get good news, I still have cancer.

I'm not in treatment to get rid of my cancer. I'm in treatment to keep it from spreading or growing. I'm in treatment to maintain my quality of life. I'm in treatment to live; living my life just includes having cancer.

When I hear from friends things like I hope this scan is clear or everything is going to be fine with this scan, I feel like I'm going to let them down. I know my scan won't be clear. I know I will still have cancer when I get the results call next week. I don't want to let people down, but I am realistic.

The best I can hope for is a call next week to hear that my cancer is stable and I can continue Avastin for another three months and do another scan in June. The worst I could hear is bad, I don't even want to think about the worst I could hear.  As I lay here in a dark room with the radioactive dye running through my body I can't help but picture it slowly pooling around the areas I know I have cancer in, I just hope that it isn't going to light up any new areas.  

When you think PET scan, you might think it's a scan to see if my cancer is gone; when I think PET scan I think of a scan to help map out the next three months of my life. The next three months of trying to contain cancer. Three more months of beating the odds.  The next three months of living my life!

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#WomensHistoryMonth

3/22/2016

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 March is Women’s History Month and today we are celebrating a woman I had never heard of before earlier this month. At the start of March, Cervivor celebrated Women’s History Month by recognizing Mary  Papanicolaou. Mary’s husband developed a test we all now know as the Pap test, which is used to diagnose changes in the cervix which can develop into cervical cancer. When Cervivor featured Mary Papanicolaou they mentioned that her husband used her as the test subject to help develop the Pap test. Imagine that for a moment, ladies. How many times do you think that Mary had to be tested while her husband, George, was developing the test that now saves lives?

I was so intrigued I dove into researching the development of the Pap test. Although cervical cancer remains one of the most common forms of cancer in women, it is among the most preventable. The Pap test, which allows doctors to diagnose early cervical changes which can lead to cervical cancer, was developed based on research which started out with the study of the vaginal discharge of a guinea pig. Literally, guinea pigs. It makes me wonder, is that where the term guinea pig came from when referring to medical testing?

George Papanicolaou was born in 1883 on an island off of the coast of Greece. In 1904 George earned his MD at the University of Athens. George furthered his education by earning his PhD in zoology in 1910 from the University of Muich. In 1913 the doctor and his wife, Mary, immigrated to the United States. They spoke no English and had no prospects when they arrived at Ellis Island. The couple did what they needed to do to survive in New York City, George and Mary both worked at Gimbel’s department store. Although he was working at Gimbel’s, he never lost his desire to complete medical research. George found work at a New York hospital. He was hired on as an assistant in the pathology department; later, he was hired on as an assistant in the Department of Anatomy at Cornell Medical College. Through the use of his academic background he moved up the ranks quickly.

Through the Department of Anatomy at Cornell, George was able to begin conducting research on guinea pigs. Through the use of a pediatric nasal speculum he was able to venture into the vaginas of guinea pigs to retrieve cell samples. These samples where tested by being smeared on a slide and studied. George determined that the samples collected could be used to map ovulation cycles of the guinea pigs.

This is all interesting, but how did we get from literal guinea pigs to humans? How did Mary end up becoming her husband’s test subject? How did we get the Pap test? Research indicates that in the 1920s George moved to testing human cells. However, he was not a clinician in the United States. He had limited access to human samples. This is where Mary comes into play. Mary was the test subject! Mary was his first, and long term, test subject allowing her husband to take samples from her cervix to develop this test, a test which now saves lives. I cannot imagine that could have been a pleasant experience. 

Eventually he was able to expand his research to additional human samples through his connection with Cornell. Cornell affiliated with the gynecologists at the Women’s Hospital of New York and they were able to obtain a supply of human samples from healthy and pathologically significant cases. George used a process on the slides to help distinguish between healthy and unhealthy cells. He was able to observe abnormal cells from a woman who was diagnosed with cervical cancer. It is then that George realized he had happened upon an easy and mostly non-invasive way to detect cancer! In 1928 Dr. Pap, as he was referred to at Cornell University Medical College, presented a paper on “New Cancer Diagnosis” at a conference. This article was later published in the New York World. 

The Pap test was not welcomed with open arms, in fact for many years the normal practice of invasive tissue biopsies continued to be the primary diagnostic tool for cervical cancer. There were no effective screening tools in place, cervical cancer was typically deadly by the time it was caught. Dr. Joseph Hinsey became chair of the Department of Anatomy in 1939 and encouraged Papanicolaou to pursue his cancer research full time. He was able to team up with Cornell gynecological pathologist Dr. Herbert Traut and together they convinced the New York Hospital to use the smear test on all female patients. The results were undeniable. Their findings were published in 1941 and recommended use of the test as part of routine medical exams to detect abnormal cells in their pre-cancerous phase.

Dr. Pap and Dr. Hinsey began focusing on breaking down barriers and bringing the Pap test to the general public in the mid 1940s. They began their focus on training pathologist and cytologists to read Pap tests using specific techniques. Dr. Pap began teaching a course at Cornell University Medical College, the first ever course in cytology. One key element to the implementation of the Pap test was training people on how to read the smears. This continues to be the key to an accurate diagnosis.

Although there are additional preventative and screening measures available today, the Pap test remains a prominent test in women’s health care. Today it is recommended to utilize a co-testing method which would include an HPV test as well as a Pap test. Vaccination against HPV is also recommended to lower your risk of contracting the high risk strands of HPV which are known to cause cervical cancer. Although you may find it a tad uncomfortable to sit in that doctor’s office and have a doctor perform the test on you, I encourage you that next time you go in for your annual visit to think about Mary. Mary Papanicolaou who was the original human test subject for this test. A test which can save your life today.

Think about Mary. Have you scheduled your well women’s exam yet?

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Advocacy & Awareness

3/16/2016

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As you have most likely seen in the media this week we lost a well known Hoosier to cervical cancer, Joey Feek.  Her death is a tragedy, it is a tragedy when any woman loses her battle to cervical cancer.  It is sad that it takes a celebrity death to bring national attention to such an important topic.  Cervical cancer awareness is something which we need to advocate for every day.  There is so much information available and it is possible that we could eradicate cervical cancer for our children.  It is possible that we could be the last generation to ever have to witness women dying from cervical cancer.  Through preventative care including HPV vaccination, HPV testing, Pap testing, and well woman exams it is possible to eradicate cervical cancer.  That is a powerful message.

On Tuesday I opened up my email and I had an email from a reporter with WRTV6 ABC, Chris Proffitt.  He had come across my blog and asked if I was available for an interview on a piece he was doing to bring cervical cancer awareness to the public eye while discussing the death of Joey Feek.  Within two hours he had come to me and we were recording for the news story which would run that evening.

I am very happy with the piece and I am so glad I was able to help bring awareness related to cervical cancer and HPV to the public eye.  Please take time to view this video and learn about vaccination, screening, and prevention.  All of these things can help save your life and the lives of our children.  Don't let another woman die due to lack of education.  Don't let the death of Joey Feek be overlooked, prevention and screening is available now.  Contact your doctor today and discuss the HPV vaccine, if you are under the age of 26.  If you have children it is time to talk to your doctor about the HPV vaccine, the vaccine is recommended for males and females starting at the age of 10.  Women, remember you should see your healthcare provider annually, even with the new testing guidelines.  It is your job to visit the doctor every year, it is the doctors job to know which test is needed; you should ask if you need a Pap test and/or HPV test when you are at your annual exam.  Men, HPV can cause cancers in you as well.  This vaccine is for men and women.  Prevent cancer:  educate and vaccinate.

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Dear Cancer...

3/12/2016

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Dear Cancer,

Right now I am really pissed off at you.  This weekend was a special weekend.  This weekend was a weekend my family had been looking forward to.  My son had his first boy scouts event this week.  My husband and son had been working diligently to design the best pinewood derby car possible and get it ready to be entered into the competition Saturday.  Friday night I started having pain on my back/side near where my kidney is located.  Pain, I assume, is kidney pain.  Pain I don't normally have.  

Cancer, how did you know I needed to be healthy this weekend?  How do you always know when I need to have a healthy weekend?  I tried to head you off by taking medicine.  It didn't work.  I woke up in pain on Saturday.  I didn't want to go to this event on anxiety medicine and pain medicine with a possible hospital stay looming over my head.  I wanted to go and be a normal family, I wanted to be a healthy thirty year old mom.  I wanted to be okay.  

​Well cancer, the joke is on you.  I went to the pinewood derby Saturday, although I had to take time to talk to my oncologist twice I enjoyed my time and watched as my son did an amazing job.  He won second place best in show out of all the students of all ages!  He also won second place in the speed race for his division, the Tigers.  Cancer, you might have me in pain and worried about what is to come but I am winning because I didn't let you ruin my time at boy scouts today.

I am continuing to try and sort out whatever is causing the pain.  No fevers have popped up yet, however, the pain keeps coming back.  I am pushing fluids, resting, and taking medicine as needed until Sunday then deciding if I am going to head into the hospital.  My fear is that if I have to go to the hospital I will get stuck there for a week.  That is what happens when I go to the hospital.  They keep me a week.  Cancer, that is your fault.

So, I am really pissed at you cancer.  However, I am super proud of my awesome son for today and I am so glad that the time he and my husband put into preparing for the race paid off.

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Reflecting & Living Will Declaration

3/9/2016

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Today should be a day to celebrate.  A year ago today I received the call which told me I was cancer free, for the second time.  A year ago today we celebrated!  A few months later we would find out that the cancer had returned again. 

Seeing this pop up in my memories on Facebook today made me take a moment to reflect.  I reflected on the last year and how much my life is different.  I am still going through treatment, I still have cancer, but I am living my life differently in one specific way:  I am purposefully advocating for cervical cancer awareness.

Another thing occurred today, I finally took the time to create my living will declaration.  I found that Indiana has an awesome resource which has the document ready for you in an easy to use pdf format.  I filled out my form indicating my wishes and had it witnessed by two friends.  Stefanie at first said no, she wasn't signing my death wishes, jokingly.  After getting my form officially completed I took the steps to get it on file.  I emailed it to my oncologist's office, siblings, and husband.  I want to make sure the document is in multiple places.  I don't want there to be any question as to what I want done if I am in the situation where a living will would come into play.

Something I learned while researching living wills is that in Indiana if you do not have a living will your spouse does not automatically get to decide about your medical wishes.  Your family could come in and disagree with what you would want to occur.  I don't want my husband or any family members to be put in that position.  I wanted to make the decision for myself.  So that portion is done.  That was the easy part, just a form completed and sent to the appropriate individuals.  Next, there are more things I need to do but at least this was a start.  Now when I go in for a medical procedure I don't have to face the judging eyes when they ask me if I have a living will and I sheepishly tell them no, even though I've had countless procedures and surgeries since the beginning of my cancer diagnosis in 2012.  Now I can tell them yes, I have created one and I'm taking matters seriously.

Now that my living will declaration is done and I have reflected on what might have been if the cancer had stayed away it is time to make another decision.  I am deciding that today is a day to celebrate, even if it isn't celebrating being cancer free we can celebrate life.  We can celebrate that I am able to live my life the way I want to, with a few modifications. 

​Today, we celebrate.

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International Women's Day

3/8/2016

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Today is International Women's Day.  I realized that probably the same way all of you did:  social media.  I have been thinking today about how to honor International Women's Day.  While discussing it with my husband he asked me what it even was, why is there an International Women's Day?  So off to the internet I went.  I checked out the International Women's Day website and found out that March 8th is a global day celebrating achievements of women.  The day also marks a call to action for global gender parity.  This day has been in observance since the early 1900s.  

I want to focus on the advocacy portion of International Women's Day as it relates to cervical cancer.  What does global advocacy look like at a local level?  Well, I feel like that is going to be something different for each person.  I would like to focus on some specific areas of advocacy.

First, I would like to talk about sharing your story.  This might mean sharing your story locally, however if you look to make a more global impact what can you do?  What can you do to share your story globally?  Can you use social media as an advocacy tool to reach a more global audience?  Have you shared your story yet on Cervivor?  

Secondly, have you done any research about the global impact of cervical cancer?  On World Cancer Day I researched the global impact of cervical cancer.  Today, I shared my blog post about the global impact of cervical cancer via Facebook with the United Nations Women's Rights.  I am hoping they choose to share it out on their social media accounts.  If not, I hope it reaches someone and makes an impact on him/her.  Sometimes it is the little things that make the biggest difference.

I challenge each of you to do one thing today to help increase cervical cancer awareness.  It can be simple.  Share this blog post, share your story, please do something to spread awareness.

"International Women's Day is all about celebration, reflection, advocacy, and action - whatever that looks like globally at a local level. But one thing is for sure, International Women's Day has been occurring for over a century - and is growing annually from strength to strength." - www.InternationalWomensDay.com
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Free Write:  What do you feel?

3/7/2016

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As part of Cervivor School South we did a free write activity.  Each of us selected a picture and we were given fifteen minutes to free write.  I want to share my free write experience with you.

I feel like my story is never ending.  This picture drew me in because all though there are several lights in because all though there are several lights which are placed separately, when brought together they show a much brighter light.  As I continue to evolve in my advocacy  I feel like I am leaving pieces like I am leaving pieces of information, hope, and hopefully empowerment each time I advocate.  I also feel like the lights signify the ongoing cancer battle that I am in.  It shows that although I might not be aggressively treating my cancer there continues to be light in my battle.  There continues to be hope, there continues to be light. 
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Avastin is On!

3/2/2016

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Since my last post I have missed a treatment of Avastin and met with the GI doctor.  The GI doctor suggested a colonoscopy so I had that procedure done.  The procedure resulted in four areas which needed biopsied, all areas in the lower section of my GI tract.  All areas which had been hit by radiation.  The four biopsy results came back last week with no pathological evidence!  This is great news!  Many of you are wondering what is causing the bleeding then?  Well, in simple terms the radiation could be causing the inflammation which is leading to bleeding.  The biopsies were a precaution, a step we needed to go through.  Now that we have determined it isn't cancer I can start treatment again.  Today was my first round back on Avastin.  

I am so happy to be back in treatment.  I wasn't pleased at all about having to miss a round of treatment but it was necessary.  If there had been a serious bowel issue which had required surgical intervention I wouldn't have been able to have it unless I had been off of Avastin for 28 days, thus the missed treatment.  However, when I am not in active treatment my mind goes wild.  If I'm not getting the treatment, what is stopping the cancer from running wild in my body?

This was a quick up date post.  There is a ton of other things in the works that I can't wait to tell you about but I am tired tonight and now is not the time.  Now is the time for me to rest, catch up on some DVR, and take me time.

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    Author

    Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer. 

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