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...

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.

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.

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.

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!

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?

I have been putting off posting this blog, as a matter of fact, I started this blog in July 2016.  I didn’t publish it for a few reasons.  Firstly, I didn’t have a name for it.  I wasn’t thrilled with Bucket List.  I thought of a name but decided against it because it wasn’t appropriate to be saying in front of my son…”I completed this and I’m marking it off of my _ _ _ _ list!”  When I finally settled on a name I realized it had been staring me in the face the entire time.  My blog is all about living life, so, I now have my Living Life List.
 
Another reason I didn’t share it is that I was scared.  I was scared of what others might think.  I was scared I might not complete it all.  Mostly, I was scared to think in any capacity about my future.  I have decided three things:  if people think negatively about this I don’t need them in my life, if I don’t complete it all that is okay, and finally I can’t let cancer prevent me from making future plans and/or goals.  So, here is my Living Life List!

• Publish a Book
• Help Pass a Cervical Cancer Law – Check!
• Be on Live TV – Check!
• Go on a FDX
• Have an Article Published in a Magazine – Check!
• Volunteer with FD1 – Wyoming in September – Here I come!
• Go Skydiving – I am terrified of heights but I like to push myself past my comfort zone.
• Drink Around the World @ Epcot – Check! Woohoo Mallory!
• Take my family to Universal – Now that I went to Universal I am hooked.  I want to take JR and Wylee!  I want Wylee to be able to be fitted for a wand and have the entire Harry Potter experience.
• Spend the Night at Lego Land in Florida – this is the number one thing that Wylee continues to ask to be able to do.
• Attend CancerCon – Check!
  
• Go on a Cruise – scheduled for Fall Break
• Travel Outside the US – scheduled for Fall Break
• Cliff Dive
• Kayak on Luminescent Waters
• Go Parasailing
• Ride in a Helicopter – Check!  Man, the view of the Vegas strip was amazing!
• Take a Cross Country Train
• Hunger Games Exhibit – Louisville
• Family Trip to DC
• NOLA
• Paddle a III / IV river in my kayak
• ND Football Game
• Spelunking
• Surfing – November with Camp Koru
• Snowboarding
• Bungee Jump off a Bridge
• Rock Climbing
• Visit a Volcano
• Spend a weekend in Nashville, Indiana with my family & Mom, Jerry, sisters, brother-in-laws, niece, and nephews.  I want to be able to take them horseback riding, to the indoor water park, and spend the night in a family cabin.
• Spend a weekend on vacation with my family and Pops, Iryna, and Artem.  Maybe a weekend in Chicago or on a fishing excursion on the great lakes.

 
A friend that I met through Facebook reached out to me and asked if I would be okay with her organizing a fundraiser for my family.  I told her absolutely but I wanted it to be clear that the money would be going to making memories and not to medical bills.  So, at the start of June she began the campaign to raise funds that my family can use for making memories.  She asked me what some things I would enjoy doing would be.  It was really hard to think of things I wanted to do but hadn’t done; I think I am not creative, or I don’t think big enough? So, I worked on a wish list of things I would want to do, things to add to my Living Life List.
If you are interested Sarah is extending her fundraiser through the end of July and has had some individuals partner up with her, the link will be in the comments.  There will also be a LulaRoe Fundraiser coming up soon which will have the proceeds donated.
 
I really ask one thing of you.  Each of you reading this, can you do me one thing?  Can you pick something off of your own personal list, whatever you call your list, and complete it by the end of 2017?  Let me know in the comments which item off of your own list that you will be completing!  I can’t wait to see all the amazing things you want to do!
​

Last month we buried my grandmother, Mamaw.  In the recent past, we have had three generations of that side of my family in cancer treatment. Mamaw, my aunt, and myself.  Each of us had a different type of cancer and each of us had a different outcome.
 
When Mamaw was told that she had cancer it really wasn’t that long ago.  She was told that she could do chemo and extend her life some or opt not to do treatment.  She opted to do the chemo, as well as radiation, to help extend her life and reduce her pain.  When I heard that was the choice she made my immediate thought was “I wouldn’t do that, not at her age.  Chemo and radiation can be awful.”  I then realized I was really glad she hadn’t consulted me before choosing to complete treatment or not.  I am glad I wasn’t an influence on her choice.  I am glad it was her that was able to make the decision.
 
As she went through treatment we were able to “compare war stories,” so to speak.  We talked about how the treatment was impacting each of us and the things we knew we could be doing differently (more rest and always more water).  There were check ins here and there via phone, which I realize could have been more frequent.  There were holidays we might not have had if she hadn’t opted for treatment.  She had treatment to give her family the gift of time.  Mamaw was religious and in her heart believed she was going on to a better place.  A place where her husband was.  A place she would be in no more pain.  I truly believe her treatment was just to give the family time.
 
I was out of town in Florida when I received a phone call from my dad, Pops.  Pops told me that Mamaw had called everyone together, essentially to say goodbye.  I was still several days away from heading home and I didn’t think I would make it in time to see her one last time.  I will always remember our last conversation.  I was able to talk to her on the phone. We talked about our treatments, our side effects, and she wanted to know what I was going to do next for a treatment.  Even when she was at her end she was worried about how I was going to continue treating my cancer.  I told her I was sorry that I wouldn’t be home until the following week.  I was out celebrating life and marking a few things off my list along the way. 
 
The last thing we talked about was a message I will never forget.  It went like this:
 
Me:  Mamaw, I need you to rest now.  I hear you are surrounded by family but you need to rest and take care of yourself.  I know it is hard to rest, stubbornness runs in our blood.
 
Mamaw:  I will rest for us, you just get out and keep living for both of us.
 
So, that is what I intend to do.  Mamaw passed away the next day.  Upon my return home, I headed down for her funeral services and we buried my Mamaw.  I was honored to have this piece of her story shared in the service. 
 
I hope that everyone takes her advice and gets out living.

I have been on the search for a clinical trial since April.  If you haven't had this experience let me tell you that it has been an ordeal.  I found one clinical trial that looked like a great match, I would have to drive to Chicago, but it looked like a good match.  We had gone through the process of getting all of my files transferred and reviewed and scheduled for me to go up and get testing done.  I actually scheduled my appointment to go in for the testing and then two hours later received a phone call that the other cancer center had filled the spot and I could call back in August.  August?  Really?  Who knows where my cancer will be by August.

Onward to trial attempt number two.  I contacted a company twice the week I found out I couldn't get into the first trial to see if I could get into another trial which is based out of another location in Illinois.  Unfortunately I was not eligible for that trial due to the fact that I have had Carboplatin on two separate occasions during my cancer treatment.

Onward I went.  When I contacted my gyn oncologist office we determined that there were two options for me.  One would be to see a doctor at Simon Cancer Center at IU in Indianapolis about phase 1 clinical trial options and another would be to try another type of chemotherapy that I had not tried yet.  We opted to look at phase 1 clinical trial options.

I woke up today and felt the anxiety.  I guess I should be happy that the anxiety about the situation took until today to kick in.  I made it to the cancer center to see Dr. O'Neil at Simon.  He is a multidisciplinary oncologist who focuses on trials.  When I went in the first thing he asked was how I am doing, I told him "I'm pretty stressed today, I don't know what would be worse for you to tell me there's no options for you OR for you to tell me there are options but we don't know what will happen."  The answer was the latter worry.  We have options, but of course in the nature of a clinical trial we don't know what will be happening.

There were many discussions, one was about where to biopsy if we needed a biopsy.  I pointed to an area in my neck and said that my PET scan had shown a spot in that area previously.  He asked if I could feel it, I told him no.  He then he felt and said he could feel it.  I am going to be honest.  Every time my hand is near my neck now I have to feel that spot.  I cracked up when I told him that is all I could feel now.  I mean really, it is the first spot of cancer I have been able to feel externally.  It shouldn't be funny, but at this point it is.

The choice we made is to try and get me onto two different treatments in conjunction with each other:  BBI503 and Pembrolizumab (Keytruda).  The BBI503 treatment is a newly discovered drug that may treat cancer by killing cancer stem cells, a highly malignant subpopulation of cancer cells that are though to be responsible for metastatic cancer.  This would be used in conjunction with the immunotherapy medication Keytruda, if approved.  The thing about immunotherapy is when it works, it can work for a long time.  When it doesn't work...well lets just say that my cancer has a ways to grow before we have to worry about that.  Onward to finalizing this clinical trial!

More details to come as I have them.  In the mean time I am here rocking life and having a great week with my family!  Next week Wylee heads off to Camp Kesem 

Two years ago today I was in remission.  In my memories today popped up the picture shown here.  I was heading in for a PET scan, a regularly scheduled PET scan.  I was nervous but I had just received three months earlier the news that I was cancer free.  I was nervous but I also thought there is no way the cancer is back so soon, I shouldn't be worrying.  

I read through my hashtags that are on this picture.  One stands out to me #CancerSurvivorProblems. I have a problem with calling my self a cancer survivor.  I really struggle with the word, in spite of what everyone else expresses to me.  I claim Cervivor, I claim thriver, I claim continuous cancer; claiming survivor is hard for me.

This PET scan is the one that revealed I had cancer for the third time.  This time there wouldn't be an "easy" solution, or any solution.  This time we would transition to keeping the cancer at bay the best we could.  This time, I would start living my life more intentionally.  

Today I look back and I can say again #CancerSurvivorProblems but I don't look at it from the same view point.  I look at it and realize I need to remember to live my life to its fullest. I look at it as someone who just had a scan that had more spots of cancer on it than any normal person would find acceptable.  However, that is my life and the path I have. Oh, and the last hashtag still stands too:  #cancersucks

I have been waiting to post a medical update until I had some answers with what is going on with me.  I don't have all the answers but I feel like I have enough to be able to give everyone a heads up here.  I started a new chemo regimen, Topetecan, in March 2017.  The plan was for me to receive Topetecan once a week for three weeks then take one week off, do three total cycles, scan, and assess for future treatments.  I was able to get week one, then week two my ANC (absolute neutrophil counts) were too low for chemo, week three I was able to receive treatment.  I had my week off and headed back in April for my next round.  On my first treatment my counts were too low, the next week they were even lower.  So, we decided no treatment in April.  In May I my ANC was barely high enough to get treatment on week one and then on week two it was too low again.  It was at that point I asked to meet with my oncology nurse and develop a plan.

I should've received eight doses of Topetecan at that point and my body had only been able to handle three treatments.  I felt like this wasn't a viable option anymore.  I asked that we proceed with doing a PET scan and to assess our options.  Yesterday I met with the oncologist to discuss the PET scan results and assess options.  The scan results were not really surprising.  The existing areas had progressed and there are a few new spots.  The good news is that it didn't go any higher in my body, I have a real fear of it reaching my brain.  There is an increase in my left subclavicular/thoracic inlet region, retroperitenoel disease has progressed, pelvic disease has progressed.  Really all of that mean that the cancer is progressing, however, it has not gotten out of hand yet.  I don't have specific spots that I can feel externally and the largest spot is only about an inch at this point.  There will continue to be growth.  There are additional chemo options but at this junction we are not pursuing them.  My body is overwhelmed by all of this and is not recuperating enough to get my ANC high enough for treatment.  My body needs a break from the chemo.  There is not anything I can eat, drink or do to change my ANC.  I cannot reduce my activity level, or increase it, to change the ANC.  I have to wait.    

At this point we are actively pursuing clinical trial options and we hope to have a goal of which clinical trials are viable within the next week.

​Until next time...get out and live your life.  I certainly will be.

I felt like it had been a month since I last wrote a blog post, I checked, it almost has!  Wow it has been a busy month.  I am going to do a few blog posts but this one is going to highlight CancerCon.

I had the opportunity to attend CancerCon in Denver this April. Tamika was a speaker at two sessions, which I hear were amazing.  I was able to select which sessions I wanted to attend so that I could get the most from the experience.  I find myself always being surprised that I still find things I need when I attend different cancer organization events.  CancerCon was no different.

There are a few highlights which stand out in my mind.  

1 - There was a nice lounge setup with comfortable chairs and adult coloring stations for if you just needed a break, a quiet place to chat, or a mental recharge from sessions.  There were early morning events for people who wanted to get up, I head out to a walk sponsored by the Ulman Cancer Fund and a morning of yoga sponsored by First Descents.

2 - I was able to be in a session, in a room, full of individuals going through similar experiences as myself.  It was the metastatic, advanced, chronic cancer session.  I would say there were about 25 people in this session.  It was the first time I had ever been in a room full of people with this similarity.  It as amazing to get to talk with these people about the challenges of someone with a chronic cancer diagnosis.  A cancer that isn't going away.  The session ran pretty smoothly, without much to report, but it was really the people that made the difference.  I left with a few new close friends who really get what I am going through.  I have already used them via social media when I am in that mindset where I really just need someone to hear me and get it.

3 - The evening events were nice.  The Scavenger Hunt developed by Epic Adventures was literally nothing less than Epic.  I found myself with a great young adult cancer survivor and his pediatric oncology nurses.  We hit the down, even in the snow, to complete the scavenger hunt.  It was developed using the app Goose Chase, if you know me you can bet that I am already planning my own scavenger hunt via the app.

4 - There was a session all about talking to children about your cancer.  It was great to be in that session and hear some of the great ways others talk to their child(ren) and to be able to share what we have done within my family.  The speaker shared some great resources but also reinforced that I needed to move along with a project I have been procrastinating on.

5 - A final highlight was one night during our free time, I had zero intentions of going but...we headed out to Howl at the Moon.  You have literally never been to a party until you have been out with a group of fellow cancer survivors and thrivers for a night on the town.  We took the shuttle bus which started out with karaoke on the bus (without any music, mind you) and then walked over to Howl at the Moon.  There was some snow around so there might have been a snowball or two.  We got inside to the warmth and it was amazing.  The dueling pianos played This is Our Fight Song  and brought all the CancerCon people up on the stage.  There we stayed the rest of the night.  It was an amazing night out and experience, I am glad I stayed up and headed out with these amazing people.

The final day wrapped up with more sessions and a great closing ceremony.  I am already making plans with friends to attend next year.  Maybe I will even apply to be a speaker?

Today is a day I will remember forever.  Today in Indiana House Bill 1278, referred to as The Cervical Cancer Bill, was signed into law by Governor Holcomb.  I was honored to have been able to speak on behalf of women with cervical cancer to the Indiana House and Indiana Senate health committees while this bill was going through the process to become a law.  This law indicates that by December 2018 Indiana will develop a strategic plan to reduce the mortality and morbidity rates of cervical cancer within the state of Indiana.
 
I am honored to have been able to be present today for the signing of the bill.  I was able to attend the ceremony, meet Governor Holcomb, and even get one of the pens he used to sign the bill into law.  It was truly an experience to remember.  As he was signing House Bill 1278 into law he used three pens.  One pen to sign his name, which he gave to a senator; one pen to sign the time, which he gave to Representative Negele; and a final pen which he signed the date.  Going through my mind I was calculating who he might give the final pen to.  I was honored when he turned and said the final pen was for the face he would remember with this law and he handed me the final pen.
 
I haven't shared my story here recently, this is what I shared at the statehouse:

I was first diagnosed with cervical cancer in 2012.  I was told that I would need to have a hysterectomy, at the age of only 27!  I was not happy with that option so I sought out a doctor who could perform a procedure which removed my cervix and lymph nodes.  A panel of oncologists determined that there was no evidence of additional disease and I would not need any further treatment.

In December 2013 I started having, what I now know were, symptoms of a recurrence.  In April 2014 a urologist ordered a scan and diagnosed my recurrence.  I saw my gynecologic oncologist shortly there after, I thought we'd walk in and hear that it was time for a hysterectomy.  He said "oh no it is far too progressed for that."  Soon after I went in for surgery and had a port placed as well as a nephrostomy tube to allow my kidney to drain properly during treatment.  I went through six rounds of chemotherapy followed by six weeks of chemo/radiation.

In March 2015 I heard the words again, no evidence of disease.  This celebration was short lived, in May 2015 I had a regularly scheduled PET scan and we determined that my cancer had returned yet again.  Now, I live my life with advanced metastatic cervical cancer.

I have a seven year old at home, I have had cancer more than half of his life.  When I was first diagnosed he was afraid he would catch cancer by drinking after me.  Now, he knows more about cancer than any of us did at the start of this.

I share my story so that those women who cannot share their story can be heard.  I share my story so that it is understood how important a strategic plan is to reduce cervical cancer rates.    I am one of the faces behind the numbers in Indiana.  I don't want women to think they are alone.  I am defeating my incurable cancer every day.  Not by getting rid of the cancer, but by living life.

It is through the training I received from Cervivor that I felt confident enough to stand up in front of the two health committees and share my story.  It is through the outreach efforts of the American Cancer Society that I was invited to speak and attend the signing ceremony.  I share my story for those women who cannot.  I shared my story at the statehouse because I think it is important for a strategic plan to be developed to help reduce the rates of cervical cancer mortality and morbidity here in Indiana.  I want to help eradicate cervical cancer.
 
Do you want to help make a difference?  Cervivor School 2017 is coming up in June and I hope to see you there!