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Through my son's eyes...

8/7/2017

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​You should prepare yourself before following this link.  I think it is beautiful, raw, and amazing.  It will also most likely be tear inducing.
 
A little backstory, I was connected with Woman’s Day earlier this year.  A writer, Jane Bianchi, had a vision.  As it was presented, she wanted to have children of mothers with cancer write letters specifically to his/her mother and share a little bit of what cancer is like through the eyes of a child.
 
I talked to Wylee and agreed to take part in this opportunity.  As you know I am very open about my cancer experience and Wylee has always been deeply involved. He has been known to attend doctor’s appointments with me, visit the hospital, and help with at home infusions of antibiotics through my port.  He is no stranger to cancer.
 
If you ask him about my cancer he can tell you more than most adults about cancer.  He is amazing.  I was so thankful that he agreed to take part in this amazing piece.
 
I hope that you take the time to read through this amazing article and take a small peek into the minds of these nine children. 
Dear Mommy:

​Mommy you are strong, fast, tough, brave and cool. I like to give you knuckles and hugs. It is really fun to spend time together and play Legos.

I have learned cancer is bad news. I'm sad you might die. If you die it would just be me and Daddy. I want you to be my only Mommy!

You are strong because you don't let cancer stop you. Whenever you first had cancer you didn't cry you just stayed strong and went with it.

I hope you don't die. If you die I will feel sad and cry. I will miss you. I would make crafts for gravestone.

Love, Wylee.
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The Clinical Trial Game

8/2/2017

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Three Strikes

Three strikes, but I'm not out yet.  So, the world of clinical trials is often a confusing and, well, clinical.  So far I have looked into and been declined by three clinical trials.  Each for a different reason:  1st Strike - a hospital also offering the trial filled up the slot; 2nd Strike - I was declined because during review of my files they realized I'd had carbo (a certain type of chemo) on two separate treatment regimens; 3rd Strike - insurance denied a portion of the trial but they took so long to deny it the trial filled up.  So, three strikes, but I'm not out yet.

You might wonder if this is going to be one big baseball analogy, well, yes it is going to be.  Clinical trials can be confusing and this is the best way I can think to explain it.  I'm not a baseball person though so if I'm way off base (see what I did there) please let me know!  I think baseball is best because most people understand the general concept of baseball if for no other reason than that it is used to refer to "how far you went" with someone back in the day.  There might not be anyone who knows what the bases are but we all understand the concept of Home Base being the furthest and First Base being the closest right?  Here goes nothing...

Up to Bat

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Stepping up to bat means you have found a potential trial that might be a fit for you.  You are going to step up to bat and take a swing at that trial.  You might get a strike, but you will never know if you don't step up to bat.  In order to step up to bat you need to look for a clinical trial, I have a team of nurses that look for me and I also use www.clinicaltrials.gov to search for trials that might work for me.  Once I have enough information I step up to bat, I call the contact for the trial - that could be my oncologist, another oncology office, or even a hospital in another state.

You should hear back from your contact, if you don't contact them again.  It is important to be your own advocate here.  If the contact thinks you are a good match for the trial than you get a hit and advance to first base.  If something happens and you are not a good fit then you strike out and start over again to step back up to bat.

First Base

Congratulations!  If you made it to first base your prize is to be subjected to a whole series of tests.  This is known as the screening period.  Each trial is going to be different.  The trial I am hoping to get into includes a review of my medical files, a general wellness exam, a wide variety of blood tests, an EKG, and a CT scan.  Additionally there are consults with the trial study nurse and the doctor.

Second Base

I'm hoping to make it to second base right now; second base is the treatment period.  During the treatment period you will receive whatever treatment protocol the clinical trial calls for.  Simple as that.  You will need to go into all your scheduled appointments, watch for side effects, and take all your prescribed medications but in this phase you are simply being treated.
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Third Base

In this analogy third base is when you have a monitoring scan and determine that the treatment is keeping your cancer stable.  If this is the case, typically, you will remain on the trial.  If you were to have a monitoring scan and they determine that the clinical trial is not helping than you might be removed from the trial.  You can personally decide to be removed from the trial, the oncologist can decide, the sponsor of the trial can decide, and the FDA can even decide.

Home Plate

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If you have made it to home plate, congratulations!  In this analogy the clinical trial worked and your cancer is shrinking; you will typically remain on the trial.  Each clinical trial has a different time frame and exit procedure.  If you come to the end of the trial you will have to follow the exit procedure and monitoring.

Wrap Up

I hope that this has helped you to better understand the game of clinical trials.  As I continue diving into clinical trials I will have more information.  In the meantime, please send positive vibes that I will make it onto second base with this trial and ultimately onto home base!
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School's Back in Session!

8/1/2017

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Today is the day you think about all summer.  Either you are awaiting the return to school or hoping the date will magically get further away so your summer can be extended.  It is the first day of school.  I realized today as I was driving on the interstate this is the first year I haven't personally had a "back to school day" since I was three years old.  When I was four I started preschool straight through until I was 17 and started my senior year I experienced the back to school day as a student.  Starting when I was 18 and onward until I was 21 I experienced back to school day as a college student.  When I was 22 I got my first teaching job and I taught in education and experienced back to school day as a school employee until I was 31. 

When I started my tenth year in the school setting, at the age of 31, I had no idea it would be my last - first day of school.  I think looking back maybe I would have celebrated it in someway.  I might have done something differently.  Maybe not though.  It is hard to look back and you can't live in the past.

As a parent is how I experience back to school day now and it is much different from when I was going back myself.  I will have to live through my son and his back to school experiences!  This morning my husband dropped him off at school.  Today Wylee was a "walker" for the first time.  He is in 3rd grade and that marks a few changes at school.  He wears a new color uniform and he can be a walker.  He walks out to my car in the parking lot, but, he feels big because he gets to walk out.  We got to talk all about his first day of school.

As I think about the fact that I won't have another first back to school day I think about a few other things.  One thing in particular is how tied our identities are to our jobs are.  When we lose our jobs, for whatever reason, it really changes who we are as a person.

​Something to think about...

In October, my 10th year in the schools, I had to move to disability due to cancer treatments.  It was a very dark time for me.  I still experience bouts of depression related to not being able to work at the same level I did before.  It was a loss of identity for me to stop working.  I don't know if you realize how often someone is defined by what "they do" and not by who they are.  You meet someone new, introduce yourself, and you ask what they do for a living.  Try and pay attention to it, you will notice it.  It happens quite frequently, I find myself still doing it. It is like a go to discussion starter.  I try to change the way I talk to others when I meet them, but I still find myself returning back to that question.

How do you think we could greet other individuals which would not focus on identifying people by their career?



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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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