Today. The day I was dreading and eagerly awaiting at the same time. PET scan results day with my gynecologic oncologist, fondly known as Dr. Hunk by my cervical cancer friends.  I headed out of work today with computer in hand so I could get some work done at the office.  I was scheduled at 3:00 but my nurse had told me I was a double booked slot because they wanted to get me in and that I would likely be seen after 3:00.  I got back into the room a little after 4:00 and met with my doctor at around 5:00.  It was a family trip to the office so JR and Wylee were along with me for today's results.

The visit with Dr. Callahan started out well.  He said the scan's overall results looked pretty good.  We jumped right in to review the results.  I can say that I fully understand why he said the scan's overall results looked good, the new spots are small when talking cancer.  Then we jumped into what a "pretty good scan" looks like for me...

Well, as I mentioned, a good scan in my mind was going in to find out that I still only had seven spots of cancer.  That was NOT the case.  The seven pre-exiting spots were still present with some changes to those spots, these changes really aren't the important elements here.  The important thing is that there are additionally five areas of concern:

• New metastatic lesion in the left thoracic inlet (my left shoulder). This lesion is measuring at 16 mm.
• Increased retroperitoneal disease (another spot near the one I had removed in my abdomen).
• Left pelvic metastatic lymph node - metabolically active.
• Right upper presacral small hypermetabolic nodule is new / much more prominent (inside the pelvis, google it if you want a better visual, I did).
• Mildly hypermetabolic nodule - low rectum left of the midline.

So there are a lot of highly technical terms there.  What it boils down to is that I went in hoping that my scan would only show seven spots and instead it showed twelve.  This is where we make the important choice, do we continue with the treatment plan or has my cancer spread past the point where Avastin alone is a viable option?  The answer is, Avastin alone is no longer a viable option.  We are going to move back into a more aggressive chemotherapy regimen.  I am going to start, again, next week on Carboplatin and Taxol.  We are going to give Avastin a break for now. 

So, although this isn't the result we were hoping for.  I am in it, we are in it.  We are going to move forward with the treatment.  I want to be clear, this is a treatment to extend life.  Our goal is extension and quality of life with my family and friends.  There are more options as the time comes.  More options.  I am not out of options.  I have gotten a wide range of responses to the news about my results.  I want to say, don't feel sorry for me.  Please be ready to support me, in whatever capacity that might look like.

I have spent the evening with JR and Wylee.  I have also been reaching out my family, friends, Cervivor community, and my First Descents Family.

Please continue to share my story.  I know I will.  I have already had the opportunity this evening to support a woman newly diagnosed with cancer, schedule an event to go and represent Cervivor here in Indiana, and sent an email to reschedule the Pap Rally and Run.  Don't think that aggressive treatment is going to stop me.  Don't be afraid to come to me for support.  Don't be afraid to ask what I need, also, don't be offended if I don't need anything at the moment.

Who is ready for a shaving my head party?  Wylee already has plans for designs in my hair!

Cervivor School this week was AWESOME!  I was so excited to be a part of the planning committee, along with fellow Cervivor Ambassadors Heather, Jessica, and Cheryl, for this amazing event in Kentuckiana.  The days (and nights) spent in Louisville with the newest group of Cervivor Graduates were so fulfilling.  We started out on Friday afternoon with an amazing scavenger hunt around Louisville.  I was able to go with a group of new Cervivor Graduates on the adventure and see the sights.  We stopped in some local shops and ended at our dinner location.  The welcome reception was great.  We had a fabulous presentation about a new immunotherapy.  As she described the trials I kept seeing pieces of the immunotherapy trials and seeing things that I was interested in, I could see myself in those stories.  However, the got to the last guideline "you must be cancer free."  That was disappointing but I am glad to have learned more about immunotherapy.

Saturday was a heavy medical day.  Something that is such an important piece of Cervivor School is the education.  At Cervivor School you will gain a bond with other women who have had similar experiences to you but you will really gain information.  Knowledge is power, when you leave Cervivor School you are ready to be a powerful advocate!  We learned about cervical cancer globally as well as in the Midwest.  We learned about support services, palliative care, and we got a lot of information about vaccination and screening.  I think one of the top things I walk away from each Cervivor School with is more information for my "advocacy toolbox."

Unfortunately due to weather we did have to postpone the Cerivor Pap Rally & 5k, no fear a new date is in the works.  I was able to take some Cervivors over to New Albany though and show them a bit about my hometown.  We went just in case anyone missed the note that the Pap Rally had to be postponed.  I can't express how special it was to share my hometown with these women who mean so much to me.

On Sunday we really focused on how to be an effective active advocate and sharing bits of our stories.  These women are all amazing and I can't wait to see what type of advocacy comes out of this Cervivor School!

After Cervivor School wrapped up several ladies had time before they had to fly out so I coordinated a trip over to the walking bridge and they were able to walk from Kentucky to Indiana.  I even got to meet them at the end with one of the new graduates.

I am so incredibly grateful for Tamika and her vision.  I am so grateful that she has developed such a strong, empowering, and effective system.  She might have started out because there was nothing else when she was diagnosed but she has taken Cervivor so far and the sky is the limit.

On my two hour drive home last night I wondered how I was going to shut my brain off.  I wondered how I was ever going to sleep without blogging about this.  I wondered, then I realized.  I was exhausted and I was going to sleep regardless.  Today I woke up refreshed and letting my mind slow a bit.

I didn't think I could be on more of a high from Cervivor School until I got onto social media tonight and saw these amazing ladies already using the knowledge they gained positively.  It is the day after #CervivorSchool ended and there is so much active advocacy happening already from these amazing women.  I couldn't be more happy with the results of Cervivor School.

How can you use your knowledge?  Have you experienced cervical cancer or HPV? Have  you shared your story yet?

As I lay here today there is a lot weighing on my mind.  Cervivor School Louisville and Pap Rally & 5k New Albany are both rapidly coming up and I couldn't be more excited about helping Cervivor to educate another group of fabulous women and to help guide them each to be the most effective advocate possible.  My next scan is also rapidly approaching, it is next Friday.  This scan will help to guide my medical team on the next steps in my cancer treatment plan.  It is weird to go into a scan hoping to see seven spots of cancer.  Hoping that the cancer has not spread or grown.  It is unreal that now seven spots of cancer is good for me.  Seven, my new lucky number.  I have now been on Avastin only for twelve months and it has kept my cancer pretty stable.  I am hoping my next scan shows more stability. 

All of these thoughts combined and made me want to explain to you why I advocate.  What a better way to describe why I advocate then a handy top ten list, in true Ball State University fashion (with a quick nod at Dave Letterman).

I advocate because...
10.  Cervical cancer isn't a dirty word and it is time we stop the stigma.
9. An average of 36 women will be diagnosed with cervical cancer in the US today, and every day until a change is made.
8. I want others to know they are not alone.
7. HPV is so prevalent, the shaming needs to end.  The shaming ends with us speaking up.
6. Cervical cancer takes the lives of an average of 11 women in the US alone daily, and those women can't advocate.
5. There are so many signs and symptoms that we, as women, dismiss as "normal" life.
4. Too many women skip their annual wellness exam, an exam that can save lives.
3. You need to know that there is a vaccine that can essentially eradicate cervical cancer.
2.  I don't want another woman to end up in the bed where I lie having to get treatment for cervical cancer.
1. If I die before my son is grown, I want him to remember me as a woman who made a difference, a woman who helped make this the last generation that has to worry about cervical cancer.

So, I advocate.  Advocacy doesn't stop because cancer doesn't stop.  I advocate now, here, from the hospital bed.  How have you been an active advocate today?

Cervivor is coming to New Albany in less than a week and I can't wait!  In addition to a three day Cervivor School in Louisville, Cervivor is heading over to my hometown of New Albany.

On Saturday, August 20th there is going to be a great event kicking off at the New Albany Amphitheater starting at 6:00 in the evening.  I am especially excited about this event because it means Cervivor has helped me bring my advocacy to my friends and family in a super impactful way.

I am so thrilled with the friends and family who have already signed up and have been spreading the word.  I've got friends from elementary school and middle school who I haven't seen in years coming out to support this important cause.  It really means a lot to me to have these amazing people coming out to support Cervivor.

I'd really love to see more people register for the Pap Rally & 5k and even more people come out to the event to take part in the Pap Rally.  This is going to be such an amazing event!

​If you haven't signed up yet, there is still time.  Here is the link to get signed up for the Pap Rally & 5k. 

I hope that you will join us for this fabulous event, if you can't join please share this information with your friends and family.  I can't wait to see my hometown turnout!

First Descents changed my life.  I know that sounds like an exaggeration and you’re wondering how is that even possible.  It was just a week on a river right?  Well, that is where you are wrong.  My week at FD1 was so amazing, exhilarating, and calming.  You might even say that it was healing.  If you haven’t read about my amazing experience, please take a moment to read about it here in my post Time in (and out) of the Eddy. FD changed me emotionally and I miss my FD Family dearly, however, I also miss the river.  I miss the effect it can have.
 
I never expected to find my calm place in the midst of the rapids on a river.  I never expected to be able to leave my worries on the shore, so to speak.  That is exactly what happened.  I found my happy place.  It was freeing, amazing, and I cannot wait for more of it.
 
In my search for more I came across the Hoosier Canoe & Kayak Club.  I am sure you are thinking the same thing I was:  there isn’t even a semblance of white water in Indiana, what sort of club could be here with any time on white water?  Well, I am happy to have found this group and to have been proved wrong! 
 
I joined the group last week online and immediately had a friendly email reaching out to guide me.  I then joined the Facebook group and shared a bit about myself.  I was greeted with a warm welcome from many members.  I was hesitant to head out to the pool since I don’t have my kayak or gear yet (yet is the key word in this sentence).  I was worried I wouldn’t be good enough or ready.
 
This week I headed out to a pool, without a kayak or gear, without knowing anyone, and I even forgot my towel.  I was out of my element.  They jumped right in and got me setup. There were a few kayaks available and someone grabbed me a paddle so I could paddle around the pool.  Soon thereafter came another member with an extra spray skirt so I could head right into learning how to roll.  It turned out, I didn’t need to be worried at all.  I didn’t feel judged.  I felt welcomed.
 
There was no shortage of help or comradery in the pool.  They helped me learn pieces of the roll and reassured me that I would get it and not to give up.  They shared stories about learning, and sometimes relearning, how to roll.  We shared experiences about our time on and off the river.  Afterwards we shared videos and pictures and talked about upcoming white water adventures.
 
If you are wondering, I didn’t get the roll at the pool that night.  However, I did find my happy place again.  I found my time of peace and clarity.  I found people who get it.  I can tell you one thing for certain.  This won’t be my last experience in the pool with the Hoosier Canoe & Kayak Club.  I’m looking forward to grand adventure with this group of individuals.  You also can bet that I will figure out the roll!  Is it Wednesday again yet?