I never realized how much the old saying "don't judge a book by its cover" was true for cancer as well.  You don't have to "look sick" to be sick. 

A few weeks ago I was in the hospital for a few days.  I was there due to pain I wasn't able to get under control.  The pain was, and continues to be, in my right upper leg on the outside of it.  I have this pain daily, the management I am still working on though.  I was released from the hospital on Friday night so I could make it to a wedding I was going to be in on that Saturday.  I was released without a real reason for the pain and given options for pain management.

On the next morning I headed out for a day full of wedding activities and I remember saying to myself and aloud to others when they would talk about it that today wasn't about me or cancer, today there was no cancer.  Today was a wedding day for my friends.  It was a non-cancer day.  However, just wishing away cancer doesn't make it so.

While I was refusing to let it be a "cancer day" I was also not managing my pain the way I should of.  I knew we would be having drinks throughout the day.  I didn't want my pain management medications to interact with the mimosa or two so I wasn't taking them the way I should have.  That resulted in, what I knew would happen, me being in extreme pain when the evening rolled around.  Try as I may my friend's amazing wedding day was still a "cancer day" for me.  It was a pretty enjoyable one though!

This brings me back to the fact that you don't have to look sick to be sick.  The wedding pictures were great.  I loved seeing all the pictures taken throughout the day and evening.  Then I found a picture of JR and myself.  Honestly, it is a great picture.  We accidentally had matched (Jackie made this amazing necklace for me which happened to match JR's tie for the event) and I feel like we look pretty badass.  When I saw the picture I had two thoughts - 1.  We look badass; 2.  Wow, I honestly wanted to cut my own leg off if it would remove the pain I was having at that moment.

I sent this picture to friends and just said "this is the epitome of the idea that you don't have to look sick to be sick."

Next time you are wondering why someone is boarding a plane with the disabled group, parking in a handicap spot, or just struggling to keep up I hope that you remember.  Think of this post, this picture and know you don't have to look sick to be sick.

Five years ago today I was in the stirrups in New Albany seeing Dr. Baldwin.  Five years ago today he was taking a biopsy of a tumor on my cervix.  Five years ago today I asked "what could it be other than cancer?"  Five years ago he told me, "you have cancer, this is just a formality."

Today I have met the five year statistic.  I am part of the 80% of women who are diagnosed with stage 1b2 cervical cancer who will live at least five years.  I am a part of the successful statistic.  This survival rate statistic is explained by the American Cancer Society: Statistics on the outlook for a certain type of cancer are often given as 5-year survival rates. The 5-year survival rate is the percentage of people who live at least 5 years after being diagnosed with cancer. 

However, I don't feel like a success story.  I thought that the 80% who make it to five years would be healthy, cancer free, not still dealing with cancer. This is not what I realized this statistic could mean.  I didn't realize you could be a part of the the positive side of the statistic but still have cancer.

Today, I am going to work on wrapping my head around the statistic in a different light.  I am going to celebrate that I am still here after five years. I cannot imagine what my family's lives would be like without me here for these five years.  My son, at 8 years old, I cannot imagine what it would be like for him if I didn't make it these five years.

During the upcoming week my family will be having the celebration of a lifetime together.  I am going to embrace the five years we've had together since I was diagnosed and hope that we can continue to keep my cancer maintained for many years to come.  

Today, please take a moment to read my story:  www.cervivor.org/erica and do something nice for someone.  If you are in the drive through buy the person behind you their meal, help someone who looks lost, just do something nice.  Tell them you are doing it in honor of my five year cancerversary, even with cancer still being a part of me I am alive.  That alone is something to celebrate!

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