So, what is happening with the cancer?  Is the cancer growing while I am in a delay for treatment?  This is something that I worry about on a daily basis, however, this will be in the forefront of my brain until I get back into get my chemo.  Unfortunately we can't just try again tomorrow.  That would be an option normally, however, insurance makes it so that is not possible.  My company is changing insurance policies and the new policy starts, you guessed it, tomorrow.  They don't automatically approve chemo and we have to wait for approval before we can move forward.  So I am playing the waiting game now and hoping that I can get chemo next Wednesday.

How did you feel if you had to delay a treatment?  Were you upset and scared like I am or were you relieved that you did not have go to through a day of treatment and the normal side effects?

I know it has been a while since I have done any posting, especially an update post.  I had a PET scan a few weeks ago and I did receive the results.  I am not quite sure why I haven't shared them out.  The results were good, by my oncologist standards.

I started out this treatment regimen with twelve spots of cancer.  At the time of the PET scan I had completed three rounds of Carbo/Taxol chemotherapy.  I have six scheduled as of right now.  The scan results showed that eleven of the spots had responded to treatment and are getting smaller.  The other spot, next to my rectum, has not yet responded to treatment.  None of the spots had gotten bigger and there were no additional spots.  This is all great news!

I think that I have been having a difficult time with the results.  I wanted some areas to be gone.  I wanted a more aggressive response.  I just wanted more.  I put on my happy face when people asked about the results and said "they are good, nothing new and most spots are shrinking."  I said it, on loop.  I tried to convince myself that it was enough.  I am still trying to convince myself weeks later.

My amazing oncologist did give me positive news.  I do not have to stop chemo at the end of the six scheduled rounds.  He said there are three reasons that we would stop chemo:  firstly, if I were too sick to continue; secondly, if it were to stop working; thirdly, if all the spots were to be gone.  So, we continue chemo.  We will do another scan in January and see how it is going.

Moving forward I am going to try and look at the glass as half full.  The chemo is doing its job.  The chemo has stopped the cancer from spreading or growing.  The cancer is shrinking.  These are all positive things.

January is coming, Cervical Cancer Awareness Month.  My advocacy continues, my life continues, and my treatment continues.  I am so thankful to have a doctor who continues to be concerned with my quality and quantity of life.

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.

Tomorrow is chemotherapy round two for this set of my Carbo/Taxol treatments.  I haven't had time to sit down and blog lately and I wanted to share one amazing night that I have had so far this round of treatments and compare it to my experience in 2014.  Each year had a shaving party but they were special in different ways.

In 2014 I really wanted to do a big head shaving party as soon as it started to fall out.  I had held out with some hopes that it wouldn't fall out, although, with Carbo/Taxol your hair falls out.  It is almost a guarantee.  I knew the day that it started to fall out I wanted to shave it.  Well, the day that it started to fall out I was sitting in the hospital. I was horrified.  I remember that my friend Cindy, of Cindy Johnson Boudoir Photography, offered to come into the hospital and do a photoshoot there and help find someone to come and shave it.  I was sick and just not up for it so we never did.  I ultimately organized a head shaving party a week or so later in my hometown where my previous neighbor did the cutting so that we could donate my hair, a high school friend came and took photographs, and I had family and friends come out.  Wylee got to do a few cuts and it was an amazing experience.

Enough about the past.  Time to chat about now.  This time I was taking it into my own hands and we were cutting it on day 11.  Many people asked why I was shaving my head.  People wondered why I would be cutting my hair, what if it didn't fall out?  If I hadn't been through this treatment before I probably would have held out.  However, I have done this before.  I knew it was coming.  I wasn't waiting around on the chemo.  I wanted some control.  After much discussion of how we would actually pull this off my fabulous friend Gretchen, of Gretchen Boyd Photography, took over the planning and did an amazing job of getting me setup with a head shaving party.  

Vinnys Barbershop & Shaving Parlor in Beechgrove did an amazing job!  Vinny set us up to come in after hours and basically take over the shop.  We came in with twenty-three people total, including myself, for the head shaving party.  We told Vinny that we wanted to let Wylee make a few cuts.  He went above and beyond anything we ever expected!  He set Wylee up on a stool, got him in a jacket, and had him shave my entire head!  When Wylee was finished Vinny set me up with a great close head shave and then it was Wylee's turn to get his hair cut and even have a great design!  This won't be our last trip to Vinnys!  

A bonus to having two amazing friends, who happen to be photographers, is that you end up with some pretty fabulous pictures!  There are such amazing pictures from the evening and I wanted to share this experience with you.  I am so grateful to have an amazing group of friends I can call family here in Indianapolis.  They made this night amazing!

During my sophomore year of college I was just a typical college student. then the summer before my junior year that all changed.  I happened to brush my hand along my neck one afternoon and felt a lump...I majorly freaked out, started crying, and called my parents saying I was sure it was cancer. Of course they assured me it wasn't cancer and when we went to the doctor he also assured me it wasn't cancer. They did a bunch of tests, and as a result, the doctor said I was borderline positive for cat scratch disease. So they gave me an antibiotic and off I went to start my junior year of college.

I was "normal" for a few months, just had my "benign" lump along my neck.  It was so big that I would gross people out with it - you know when you hunch your shoulders forward and there are divots above your collar bone?  Well my left side was filled with a gnarly mass. I was totally comfortable though, because my doctor said it was nothing to worry about.

It was when I went back for my follow up in October that things changed.  My doctor thought that is should have been gone by then, so he scheduled a biopsy.  They ended up taking out a hockey-puck sized mass of abnormal lymph nodes.  A few days later, while I was recovering, I walked into my parents' bedroom to find my mom crying after she had gotten my biopsy results...it was cancer.  (I'm still angry about the fact that my doctor told both my parents first before me, even though I was 20 yrs old).

We found an amazing oncologist and started the process of staging my disease.  After scans, exams, and a bone marrow biopsy (worse pain of my life to date) I found out I had Stage 3A Hodgkin's Lymphoma.  I had cancerous activity in my lymph nodes of my neck, chest, abdomen, and pelvis. 

Dr B started me on AVBD, which is the first-line treatment for Hodgkin's Lymphoma.  I had a PICC line placed in my arm (like a more permanent IV) and received chemo every other week for 6 months.  Chemo was rough, I would feel like crap for 4-5 days after chemo, and I slept a lot.  I had to get bone marrow stimulating shots weekly for half of my treatment because my blood counts kept dropping too low to get chemo.  I wasn't a candidate for radiation because I had so many areas of disease, the radiation field would have been too big. 

After 6 months of chemo, other treatments, and a slew of CT scans, my 6 month PET scan showed complete remission!
​
I immediately jumped back into being "normal". In addition to dealing with cancer treatments I had worried about school. Being in my junior year I didn't want to fall behind, and I didn't want to admit to myself or anyone else that I was sick.  I was told I was not allowed to return to school, but I fought with the administration to finish one course from home.  After treatment finished I worked twice as hard to graduate on time with my class.  Once everything calmed down I really struggled without a set end goal - I had beat cancer, graduated on time, but now what?  This feeling lasted for a long time, but I suppressed the feelings as best I could to be normal again. 

​Many years later I realized I had never dealt with the emotional side of being sick or with how much it had changed who I was overall.  Going on at trip with First Descents is what finally helped me realize what I needed to deal with.  I had avoided support groups when going through treatments, I wouldn't even use the word cancer or oncologist, I was in denial that I was sick.  It took going to FD to realize what an impact cancer had on me - hearing others speak the thoughts right out of my head, or finally sharing my story, my thoughts, and worries. I left my first trip feeling like a giant hole had been ripped out of my soul.  I hadn't known I needed these things to be a part of my life until they were gone.  I cried the whole flight home and the whole next day.  I went through a slump after that for about 5 months, struggling again with what are my goals, what is my purpose, why did I survive, why am I not living the fullest life I could possible have...  Thankfully with the help of an amazing counselor I was able to sort through these emotions and I feel so much stronger and centered for it.  And by going through all of this I realized FD is part of my purpose in this life.  Survivorship is my purpose.  I now live a more fulfilled life and finally feel like I know who I am again...I am Hugo.
- "Hugo" Guinevere

Support comes in many forms, even amongst the treetops.  This weekend Amanda brought three of the kids up for an overnight visit.  This supported me in so many ways.  It gave me time with Amanda, which is always fabulous, however the support wasn't all for me.  Amanda coming gives Wylee time with his cousins, his friends.  One of the major ways I can use support is helping make Wylee's childhood as "normal" as it can be.  He is literally one of the two caregivers in my household when it comes to helping me out.  JR and Wylee are both amazing but I want both of them to have authentic outside experiences too.  Experiences that are not directly impacted by cancer.  I want Wylee to have those amazing "kid moments" and for JR to be "just a husband" from time to time.

This weekend I asked if Amanda wanted to visit and away she went heading up to Indianapolis. Saturday JR let us have a girls night in and he took the kids bowling and to play putt putt.  Sunday I signed Amanda and I up to go to Eagle Creek for Go Ape - a treetop zip line and obstacle course.  We all met at a local park for a little hike down to the water after we finished up.  It was such a great weekend!

She didn't ask any questions about what Go Ape meant or was, she was immediately along for the ride.  Amanda had never been on a zip line and has a tad fear of heights.  JR was horrified I had signed her up without explaining what it was we were going to be doing.  Amanda didn't mind, though I did think I was going to have to push her off one of the ledges at the start of an obstacle.  

​I have a goal to get #outlivingit and living my life to the fullest as often as possible and I'm working on checking things of my Living Life List (which I promise to make public soon).  This experience was on the list.  One more checked off.  Now time to add something to the list!  What would be on your Living Life List?

​I hope you had an amazing weekend!