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!
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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!

"Oh, that is that easy cancer right?"  Honestly, tonight isn't the first time I have heard this question related to cervical cancer.  Somewhere along the way, for some people, it appears to have become acceptable to ask this question.  This question has specifically been directed at cervical cancer.  It is hurtful.  It perpetuates the idea of someone not having "enough cancer" or having "just surgery" as a treatment somehow equating to a lesser cancer.  All of these ideas are ludicrous.  Cervical cancer kills over 4,000 women in the US and over 270,000 worldwide annually.  I can assure you those families and friends do not think of cervical cancer as an easy cancer.

If you are reading this, you are probably more than semi familiar with my story.  You may know me personally, or not.  Reading this will probably evoke a strong emotion for you.  You are probably wondering what happened to prompt this frank discussion.  Well, tonight someone said those seven words to me.  They implied that my cancer, which is literally killing me, is a lesser cancer.  An easy cancer.  It infuriated me.  However, I continued on with my evening with my son and family because that is what was going to make me happy.  

Now is the time for me to hash out what happened.  I knew I had to blog about this experience.

Firstly, I was appalled.  Literally appalled that anyone would think this, let alone say it out loud to me.  I will be honest with you.  I don't "look sick" today.  I probably look a little rebellious with my short hair cut with teal and white (blonde) highlights. If you look at me today I might not look like cancer.  I assure you.  This is a face of cancer.  As a matter of fact give it a few days, when I shave my head.  Give it a few weeks, when the Carbo/Taxol starts to take a toll on my body and I can look like what you think a cancer patient should look like.  I bet then that you won't be thinking I have the easy cancer.

I also reached out to friends.  I simply told them what was stated.  They were furious for me.  They wanted to know how I responded, what I did, and how I corrected the situation.  I wouldn't have wanted to be the person making that statement had my friends been around, based on their reactions to hearing me say it.

On Thursday night I told JR that I wanted an epic adventure over Labor Day weekend.  With finding out the results of my PET scan just a few days earlier and being one week from starting aggressive chemotherapy again I just really needed to get outside of my head.  At around noon on Friday he texted me and said "Lets go to Jam's," those four words were all I needed to see.  I texted Jam, a fabulous friend who I met as the amazing photographer on my First Descents FD1 adventure in July.  This put everything into motion.  Jam immediately said we could head over to Pennsylvania for a holiday weekend of adventure.  He presented a multitude of options for what we could do.  Each option sounded absolutely amazing to me so I kept telling him to just pick.  He eventually said I was going to have to decide so...

I said, "I have incurable cancer and I don't know when I can be back on the water, I want to do the big rapids!"  This meant that our Saturday would be spent in Maryland on the beautiful Upper Yough on the Youghiogheny River.  Jam worked miracles and found a paddler who would be crazy enough to man the raft and another friend to add an additional safety kayak on the side.  We started out in our raft on some calm water on the Upper Yough and worked on paddling.  JR had never even been on white water and I had only kayaked with the FD group on the New.  I had never been inside a raft before.  It was a great start the the epic adventure I was seeking.  I will tell you that I swam the first "named rapid" on the Upper Yough, Bastard.  I am not even 100% sure how I ended up out of the boat but I swam a pretty intense class IV rapid from top to bottom.  I will say that our amazing guide said that I was smiling more than any person he'd ever seen swim like that and that it was the longest swim he'd ever seen.  I can assure you that he took some pretty epic adventure stories from our day on the river.  That was the last rapid I fell out on, although JR did take a few spills into the Yough himself.  

Saturday night we had an amazing dinner and everyone headed off to bed early.  JR said that the day was the most physically demanding day he thinks he had ever had.  He had no idea how much work it would take for a day rafting on the river.  I was equally (or more) sore and tired but I was also energized and empowered.  It is hard to think about cancer when you are focusing so hard on getting through the river!  Jam out did himself with the amazing Saturday adventure he put together for us.

Sunday we woke up without a specific plan and chatted with Brittany until she had to head off to work. At around 11 o'clock I said "if we leave now we can be at Hugo's by dinner." Hugo is another FD Staffer who I am now happy to call one of my best friends.  We compromised with meeting Hugo half way and Jam, JR, and I headed off to Erie, PA for the afternoon.  The four of us grabbed a quick late lunch and then to the beach.  Something happens when you travel with a photographer, pictures.  Beautiful, stunning, amazing pictures (you really haven't lived until you've seen my husband and Jam setting up for a mermaid style photoshoot in the middle of a crowded Labor Day weekend beach).  Jam did such an amazing job capturing our day out on the beach, capturing the #FDFamilyLove, capturing the magic.  An even more amazing magic happens when you travel with friends. 

It is always sad to leave friends.  It was hard when it was time for us to head back away from Erie and for Hugo to head home.  It was hard after brunch when it was time for us to leave and head back home.  However, I cannot think of a better way to have spent my holiday weekend.  I had such an amazing time introducing my husband to just a peek into the #FDFamilyLove on this trip.  It was the epic weekend I'd hoped for and more.  In the end we had traveled through Indiana, Ohio, West Virginia, Pennsylvania, Maryland, and Kentucky from Friday night to Monday. I am blessed to have a husband and friends who are willing to go with the flow and make my life amazing.