Going through chemo means that you must schedule your entire life around those chemo treatments, not just the days you physically have chemo but all the days around it.  You have to worry about if your counts are high enough to be in public, go out of town, be in fresh water, and even go to the dentist.

It is a challenge when I simply want to live my life and not have to be concerned about if my counts are high enough to go out and do something I want or need to do.  I want to be able to schedule a vacation with my family and not have to be worried I might end up in the hospital due to fact that my counts were too low and I got sick. I just don't know what my day to day life will be like.

One thing you might not think about needing to worry about is your ability to go to the dentist.  About two years ago I was in my aggressive chemo treatment and found out I needed fillings, I never went.  I scheduled the appointment but then when I went to go I realized that it would conflict with the week I was typically low and therefore I wasn't able to get the fillings.  This time my teeth were bothering me and I knew it was time to get a fillings.  This meant that I would need to contact my oncologist and see which day would be appropriate for me to have the procedure.  The oncologist's office was great and scheduled me to come in for a blood draw and ensure all of my counts were okay.  When I talked to them they said they were mildly concerned about a few numbers but that I should be okay to go on to the dentist.  I went in yesterday and the four fillings I needed.

Did you know you the extent that some cancer patients have to schedule their lives around treatment?  Please never tell a cancer patient or survivor that their cancer is the easy one.  The next time you are picking up the phone to schedule a regular dental appointment, one you don't really want to bother with, you can picture me.  You can picture a person who was ready to go in and get fillings but could not just schedule it because of cancer.  The impacts of cancer are endless.

This isn't suppose to be my life.  On this day four years ago I announced that my oncologist said I was a perfect candidate for a trachelectomy.  It had been determined that I had a 2 cm by 3.5 cm tumor visible on my cervix and that this procedure would be successful at eradicating the cancer from my body.  

I remember being thrilled to hear that I was a candidate for the trachelectomy.  In October 2012 my son was three years old, I had already been reunited with JR, now my husband.  He had said I love you for the first time earlier in the month.  I had allowed myself to look forward to a future.  When I was diagnosed with cervical cancer in October 2012 that changed the type of future I could look toward.  With the "normal" treatment for my original stage of cancer being a hysterectomy that changed the future I had to expect.  When my oncologist determined that I could have this procedure and preserve fertility I was hopeful and ready to complete the procedure.

When I look back at this post from four years ago it reminds me that this isn't the life I was suppose to have.  This life that I am living, with persistent recurrent metastatic cervical cancer, is not the life I was looking forward to.  When I made this post I can imagine what was in my mind.  I was thinking, lets do this treatment and put cancer in the past.  Lets move forward to a time when we can be married and a time I could give birth to a younger sibling for my son Wylee.  Lets move on.

That picturesque life is not the life I have.  According to research the data indicates that the overall recurrence rate following a trachelectomy is less than 5%.  Less than 5%.  I am in that 5% and I am now living my life with cancer.  I am married to JR, however that wedding was touched by my first recurrence and looking at the pictures you can see that our wedding day was completed with a tube coming out of my back and no hair.  I lost my fertility with treatments for my recurrences.  Now I move on, living with a cancer that isn't going away.  Living.  Today I will take some time to grieve the loss of the life I was "suppose to have" because it is okay to take some time to mourn that loss.  However, I will move on.  I will move on and advocate in hopes someone else doesn't have to go through what I have gone through.  I will advocate for those who are going through a cancer diagnosis so they know which resources are available to them.  I will live my life.  

I have a beautiful and amazing family who loves me and supports me.  I have great friends and extended family who support me.  I even have amazing organizations who I am incredibly thankful to be a part of.  Although it is not what I expected, I love the life I have and I plan to continue living it to its fullest.  I challenge each of you to live the same.

Saturday was epic.  Every other year the Hoosier Canoe & Kayak Club puts on a Pirate Paddle Party and this year happened to be a year of the party.  I immediately signed up for JR and myself to attend the event.  A few weeks later one of the board members reached out to me and let me know that they would be honoring First Descents at the event and asked if I would be willing to speak.  I was so thrilled to be able to speak at the event and even more excited that they were wanting to help benefit First Descents. If you are interested in helping to support First Descents please donate on my Out Living It Project.

I started out the day getting dressed up as a pirate and then heading to the put in on White River where JR dropped me off with all my gear.  There was a band, Red Rum, playing at the put in as all the pirate paddlers arrived and got ready for the mighty White River.  We put in around 2:30 and headed downstream for our nine mile paddle to the White River Yacht Club.  Looking around I knew I was in for quite a day in my boat, most of the boats there were flat water boats and mine is a white water boat.  I knew I was going to feel each of the nine miles but I was up for the day.  I had an amazing time and got to meet some great people on the water.  One of the paddlers I'd never met before, Mark, even stuck with me for the majority of the river.  It is amazing the difference in how a white water boat handles (or doesn't) on flat water.  As soon as I lifted the paddle out of the water to grab a drink I was spinning around.  It was great to get the boat out on the water though!  This was the maiden voyage for my boat as she has only seen the water at the pool with me before this weekend.

When we got to the White Water Yacht Club it was time to party like a pirate with another band, First Time Caller.  Dinner and drinks were amazing and there was even a contest for best boat design and best costumes.  At the conclusion of the welcome and awards I was able to get up and speak about my experience with First Descents (check out the video here if you'd like to hear what I had to say).  A fellow Hoosier paddler, David Powell, made me a beautiful blown glass bowl to commemorate the event and I was honored to receive it. Speaking of getting to talk, I had spent some time on the water thinking about what I wanted to say.  I had spoke to my FD friends to see if anyone had anything specific they would share if they were going to talk about FD.  In the end I would say that I mostly just got up and spoke from my heart about my experience and I think it went pretty well.

I count myself as lucky.  My FD1 experience brought me two additional families, a FD Family and a HCKC Family.  Both of these families follow up with me and play special roles in my life.  When I am on the water I am not a cancer patient or survivor, I am not sick, I am just a paddler.  I am out living it and loving my life.  I am looking towards the next river, the next rapid, the next descent.

A few weeks ago I was honored to be the Feature Friday story on Cindy Johnson Boudoir Photography's blog.  I am honored to have been recognized on Cindy's blog.  I wanted to take a moment to remind you all that even if you don't think your story is worth documenting it is.  Take the time and document your story either with words, pictures, or both.  You might look back and wish you had.  You can follow the link above or click on the images below to see the full feature.

I have so many topics that I planned to blog about but haven't gotten around to.  One of the amazing experiences I have had recently is taking part in an positive body empowerment shoot with the fabulous face behind Cindy Johnson Boudoir Photography.  Cindy had put out a note to a fabulous group of women to see who would be interested in coming out for a special surprise shoot.  I was honored to take a part in this shoot and wanted to share the special photographs which were taken the evening of that special shoot.

We all showed up and Cindy explained the premiss for what we would be doing.  We were going to be sharing our stories aloud with each other, writing the negative words people used towards us, washing them away, then replacing the words with positive empowering words or images.  It was an amazing experience and I wanted to share some pictures of my portion of this amazing project with you.