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

I have been waiting to post a medical update until I had some answers with what is going on with me.  I don't have all the answers but I feel like I have enough to be able to give everyone a heads up here.  I started a new chemo regimen, Topetecan, in March 2017.  The plan was for me to receive Topetecan once a week for three weeks then take one week off, do three total cycles, scan, and assess for future treatments.  I was able to get week one, then week two my ANC (absolute neutrophil counts) were too low for chemo, week three I was able to receive treatment.  I had my week off and headed back in April for my next round.  On my first treatment my counts were too low, the next week they were even lower.  So, we decided no treatment in April.  In May I my ANC was barely high enough to get treatment on week one and then on week two it was too low again.  It was at that point I asked to meet with my oncology nurse and develop a plan.

I should've received eight doses of Topetecan at that point and my body had only been able to handle three treatments.  I felt like this wasn't a viable option anymore.  I asked that we proceed with doing a PET scan and to assess our options.  Yesterday I met with the oncologist to discuss the PET scan results and assess options.  The scan results were not really surprising.  The existing areas had progressed and there are a few new spots.  The good news is that it didn't go any higher in my body, I have a real fear of it reaching my brain.  There is an increase in my left subclavicular/thoracic inlet region, retroperitenoel disease has progressed, pelvic disease has progressed.  Really all of that mean that the cancer is progressing, however, it has not gotten out of hand yet.  I don't have specific spots that I can feel externally and the largest spot is only about an inch at this point.  There will continue to be growth.  There are additional chemo options but at this junction we are not pursuing them.  My body is overwhelmed by all of this and is not recuperating enough to get my ANC high enough for treatment.  My body needs a break from the chemo.  There is not anything I can eat, drink or do to change my ANC.  I cannot reduce my activity level, or increase it, to change the ANC.  I have to wait.    

At this point we are actively pursuing clinical trial options and we hope to have a goal of which clinical trials are viable within the next week.

​Until next time...get out and live your life.  I certainly will be.

I felt like it had been a month since I last wrote a blog post, I checked, it almost has!  Wow it has been a busy month.  I am going to do a few blog posts but this one is going to highlight CancerCon.

I had the opportunity to attend CancerCon in Denver this April. Tamika was a speaker at two sessions, which I hear were amazing.  I was able to select which sessions I wanted to attend so that I could get the most from the experience.  I find myself always being surprised that I still find things I need when I attend different cancer organization events.  CancerCon was no different.

There are a few highlights which stand out in my mind.  

1 - There was a nice lounge setup with comfortable chairs and adult coloring stations for if you just needed a break, a quiet place to chat, or a mental recharge from sessions.  There were early morning events for people who wanted to get up, I head out to a walk sponsored by the Ulman Cancer Fund and a morning of yoga sponsored by First Descents.

2 - I was able to be in a session, in a room, full of individuals going through similar experiences as myself.  It was the metastatic, advanced, chronic cancer session.  I would say there were about 25 people in this session.  It was the first time I had ever been in a room full of people with this similarity.  It as amazing to get to talk with these people about the challenges of someone with a chronic cancer diagnosis.  A cancer that isn't going away.  The session ran pretty smoothly, without much to report, but it was really the people that made the difference.  I left with a few new close friends who really get what I am going through.  I have already used them via social media when I am in that mindset where I really just need someone to hear me and get it.

3 - The evening events were nice.  The Scavenger Hunt developed by Epic Adventures was literally nothing less than Epic.  I found myself with a great young adult cancer survivor and his pediatric oncology nurses.  We hit the down, even in the snow, to complete the scavenger hunt.  It was developed using the app Goose Chase, if you know me you can bet that I am already planning my own scavenger hunt via the app.

4 - There was a session all about talking to children about your cancer.  It was great to be in that session and hear some of the great ways others talk to their child(ren) and to be able to share what we have done within my family.  The speaker shared some great resources but also reinforced that I needed to move along with a project I have been procrastinating on.

5 - A final highlight was one night during our free time, I had zero intentions of going but...we headed out to Howl at the Moon.  You have literally never been to a party until you have been out with a group of fellow cancer survivors and thrivers for a night on the town.  We took the shuttle bus which started out with karaoke on the bus (without any music, mind you) and then walked over to Howl at the Moon.  There was some snow around so there might have been a snowball or two.  We got inside to the warmth and it was amazing.  The dueling pianos played This is Our Fight Song  and brought all the CancerCon people up on the stage.  There we stayed the rest of the night.  It was an amazing night out and experience, I am glad I stayed up and headed out with these amazing people.

The final day wrapped up with more sessions and a great closing ceremony.  I am already making plans with friends to attend next year.  Maybe I will even apply to be a speaker?