I haven't done a medical update in a while, mostly because I don't really have any answers.  My hospital stay a few weeks ago was due to pain.  I've had pain ranging from the side of my right leg above my knee up to my lower right back, near my kidney.  The pain was unmanageable at that time from home and I had to go into the hospital.  I was there for a few days having tests run and managing the pain.  The ultrasounds and leg MRI did not give any results.  I also had my ureteral stent exchanged.  I actually had my MRI immediately following my stent exchange, this will be important information:  I was well medicated going into the MRI machine at St. V.

The following week I had to get additional MRI testing. The daily pain was, and still is, persisting.  I was hoping that the additional MRI would give us some answers.  This time my MRI would take about an hour and a half.  I can safely say it was the worst test experience I've ever had!  I got in there and had my port accessed, all is well.  Then I got situated into the MRI machine.  They had me move my legs apart more and then tilt my toes towards each other, then they taped my feet together so they would stay aligned.  They set me up with headphones and my music of choice:  Jack Johnson.  Headphones in place and it was time to go.  

The MRI was so loud and isolating that I can only describe it as torture.  I really don't say that to be dramatic.  I thought while I was in there that this is what a person would need to do to me in order to get information out of me.  The would just have to put me in a running MRI machine.  That is it.  So, now you know the trick to gathering information from me.  MRI.

When they infused the contrast dye it felt funny, but, really all contrast dye feels and tastes funny.  When she got me back into the machine I started sneezing and my tongue was tingling.  I squeezed the "emergency ball" and they pulled me out quickly.  After about ten minutes the symptoms subsided and I was able to resume my scan.  It went well through to the end.

I waited and called the nurse late the next afternoon.  It was funny because everyone else was saying I hope that the "results are good" and I was over here thinking "I hope they show a problem so we know what this pain is for." Well, the scans were good.  No bone mets, which was a concern.  My hip and lower back don't show definitive answers for why I'm having this pain.  

Tomorrow I have a CT scan to see how the clinical trial is progressing.  In the mean time I really don't have any updated information or answers but I know several people wanted to know how the MRI went.

More to come as I have information. 

Tuesday morning I boarded a plane in Indianapolis.  I was heading for Boston so that I could meet up with another Cervivor for support and to go say goodbye to my friend and Cervivor Sister Jillian.  As I boarded the plane a lot of thoughts were going through my head.  This was the first time I had been to a memorial service for a friend since I was 19 and lost a friend to a car accident.  This time was going to be different, I was saying goodbye to a peer that I have become bonded to over the past few years with a common connection:  cervical cancer.  Jillian was an amazing-loving person.  She wanted women to know that cervical cancer wasn't the easy cancer, I can hear her saying now in my mind "it isn't fucking easy!"  We would discuss treatments, funeral arrangements, disability, and what it was like to have young children and know you are going to die.  We have those things in common.  Sometimes we would discuss nothing at all, or hilarious things like her being worried her "toots" would keep me up :-)

I was able to travel to Boston to properly say goodbye to Jillian, if there is such a thing as a proper goodbye.  I was honored to be able to speak and let her family and friends know that Jillian's story would live on.  She will continue to make a difference.  The Cervivor Community will not forget Jillian and we will make sure that her story is not forgotten.  

I honestly am still processing the fact that Jillian is gone.  It is hard to imagine that I can't pop onto messenger and run a new treatment option past her to see if she thinks it is something worth trying.  I can't imagine never seeing her at another Cervivor event.  Being her roommate was hilarious and fabulous in DC.  I am grateful for the time I had with her.

I woke up at around 2:00 this morning in the hotel room and I turned on my phone, I wish I hadn't.  I turned it on to find that another Cervivor Sister passed away.  Late last night Lisa passed away.  I quickly found myself crying alone in the hotel room.  It is just too much, too fast.  I just talked to Lisa on messenger on Saturday to start planning another visit to northern Indiana to visit her.  It had been a few months since I had been to her house and it was time to have a face to face chat time again.  Saturday.  I just talked to her Saturday.  The last thing she said was "how is your trial going", it is amazing to me that even in the final days this is where the conversation turned.  Lisa and I had similar stories as well.  Her story will not go with her, the Cervivor Community will continue to share it.  

That is really all I can write for now.  Like I said, it is all too much too soon.  Too much to process.  I am going to go for a walk, catch a plane back to Indiana, and continue to try and process the loss of these two Cervivor Sisters.  These Cervivors who both should know, your story has made a difference.  Your story will continue to make a difference.

Please take some time today and read the stories of these two amazing women:

cervivor.org/Jillian
cervivor.org/lisa-3

As many of you know I have a list of things I would like to do.  I often refer to it as my Living Life List, some people refer to it as a Bucket List.  In June, I had the amazing opportunity to check some items off of my list.  I headed down to Florida for Cervivor School, at the end of the week my friend Mallory met me in Delray so we could set off on an adventure of our own for the next ten days.
 
Our time was amazing! 
 
Sunday morning, we wrapped up Cervivor School, grabbed an amazing lunch, and we headed off on our way.  We road-tripped it from Delray Beach, Florida up to Kissimmee, Florida.  Mallory even let me nap a little along the way because I was exhausted from Cervivor School.  When we arrived at our timeshare we got checked into an amazing room and decided it was time for dinner.  Dinner was iffy but that is always a chance you take and we enjoyed it nonetheless.  Monday, we made up with it by having Tijuana Flats for lunch and spending the day at the pool.
 
Tuesday was a Living Life List day!  We headed off to Epcot set to Drink Around the World!  This is something I have wanted to do for years.  My parents originally met in Florida and Pops used to tell me about Friday night adventures at Epcot taking part in Drinking Around the World.  Mallory and I did our research and we decided we were going to start in Mexico and make our way around to Canada.  There are a few things you don’t think about when you’re setting out to complete this feat.  One thing in particular, each “country” has a different type drink with a different type of alcohol.  The whole “do not mix liquor and beer” theory goes right out the window!  It was about the sixth country that I started to re-evaluate my life and if we were actually going to make it through.  We tried to space things out, a drink each location, a snack every other, and of course hydrating with water in between.  We had taken an Uber to get there so we knew it would be a safe trip home. 
 
Tuesday was a day I will never forget.  One reason is because of how incredibly amazing the entire Epcot Drink Around the World experience was but another because it was during our adventure that I received a phone call telling me that I didn’t qualify for a clinical trial I was desperately trying to take part in.  I took a break in the adventure to talk to two different oncology offices as well as create a video about how I felt about the situation.  Thankfully we were only two countries in at that point!

​On Wednesday and Thursday, we spent our days having tasty lunches, lounging by the pool, and we spent our evenings with an amazing FD friend:  Hurricane. On Wednesday night Hurricane met us and took us out to an amazing buffet dinner and we walked around inside an amazing hotel.  We even got to see alligators that lived inside the hotel!  Thursday night Hurricane’s entire family took us out to dinner.  I was so thrilled to meet Hot Wife as Hurricane always fondly referred to her at First Descents, as well as their two polite and beautiful daughters.
 
Friday was Mallory’s day: the only condition Mallory had for going on this grand adventure with me was that we had to go and see Harry Potter Land at Universal, both of them.  I had never been to Universal and it was amazing!  I spent the weeks leading up to the vacation reading as much Harry Potter as I could and finally conceded and just finished off my watching the movies so that I could see as much as possible before we headed to Universal.  We spent our time riding amazing rides, sightseeing, and Mallory even ordered her Butterbeer (which I tasted and I thought was awful).  We got to ride the Hogwarts Express and travel from Diagon Alley. 
 
As the rain started to fall at Universal we headed for some shelter to check out the weather forecast and we found ourselves in Dr. Seuss Land.  After a quick break from the rain in a tiny store entrance we headed off for more indoor rides.  One ride Mallory had told Wylee about was The Hulk Rollercoaster, therefore, we had to ride it!  We waited for the storm to clear and the ride to get the go ahead and we jumped into line to ride.  It was a great rollercoaster!  When we were finished we hopped back on the Hogwarts Express and headed to the first side of the park.  It was there that I rode the most terrifying ride I have ever ridden!
 
Saturday, we checked out of our timeshare and headed off to Georgia.  We had planned to stay at an AirBNB on Tybee Island which ended up being a disaster!  We walked into a house that smelled like cat urine.  We stayed for about fifteen minutes before we decided that we couldn’t stay there.  We contacted her immediately and let her know we would not be able to stay.  We had to play the cancer card so that medically it was a viable reason we couldn’t stay.  With my treatments, I have a strong reaction to scents and it just wasn’t an option to stay.  We packed up and headed to the beach to assess our options.  We decided to head into Savannah and stay in the historic district.
 
Our time in Savannah was amazing.  I am ready to go back now.  I told JR I would live there, it was the most beautiful place I have ever been.  Staying in the historic district was great.  There was amazing food everywhere you turned.  Beautiful streets, sidewalks, staircases, and buildings.  On our first night, we needed out for a Ghost Tour Pub Crawl which was hilarious, amazing, and I am so glad that it was a pub crawl vs riding around in a vehicle just listening to someone talk.  We were able to go out with a friend from home and his roommate.  There bars were great and I went to my first Drag Show.
 
Overall, the days I spent traveling were amazing. I was ready to get home to my family though after such a long time away.  I think I slept an entire twenty-four hours when I got home, except that is impossible because I jumped right into NESCO games when I got off the plane and then celebrating a friend’s birthday…that is for a separate post though!

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