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?

Today is a day I will remember forever.  Today in Indiana House Bill 1278, referred to as The Cervical Cancer Bill, was signed into law by Governor Holcomb.  I was honored to have been able to speak on behalf of women with cervical cancer to the Indiana House and Indiana Senate health committees while this bill was going through the process to become a law.  This law indicates that by December 2018 Indiana will develop a strategic plan to reduce the mortality and morbidity rates of cervical cancer within the state of Indiana.
 
I am honored to have been able to be present today for the signing of the bill.  I was able to attend the ceremony, meet Governor Holcomb, and even get one of the pens he used to sign the bill into law.  It was truly an experience to remember.  As he was signing House Bill 1278 into law he used three pens.  One pen to sign his name, which he gave to a senator; one pen to sign the time, which he gave to Representative Negele; and a final pen which he signed the date.  Going through my mind I was calculating who he might give the final pen to.  I was honored when he turned and said the final pen was for the face he would remember with this law and he handed me the final pen.
 
I haven't shared my story here recently, this is what I shared at the statehouse:

I was first diagnosed with cervical cancer in 2012.  I was told that I would need to have a hysterectomy, at the age of only 27!  I was not happy with that option so I sought out a doctor who could perform a procedure which removed my cervix and lymph nodes.  A panel of oncologists determined that there was no evidence of additional disease and I would not need any further treatment.

In December 2013 I started having, what I now know were, symptoms of a recurrence.  In April 2014 a urologist ordered a scan and diagnosed my recurrence.  I saw my gynecologic oncologist shortly there after, I thought we'd walk in and hear that it was time for a hysterectomy.  He said "oh no it is far too progressed for that."  Soon after I went in for surgery and had a port placed as well as a nephrostomy tube to allow my kidney to drain properly during treatment.  I went through six rounds of chemotherapy followed by six weeks of chemo/radiation.

In March 2015 I heard the words again, no evidence of disease.  This celebration was short lived, in May 2015 I had a regularly scheduled PET scan and we determined that my cancer had returned yet again.  Now, I live my life with advanced metastatic cervical cancer.

I have a seven year old at home, I have had cancer more than half of his life.  When I was first diagnosed he was afraid he would catch cancer by drinking after me.  Now, he knows more about cancer than any of us did at the start of this.

I share my story so that those women who cannot share their story can be heard.  I share my story so that it is understood how important a strategic plan is to reduce cervical cancer rates.    I am one of the faces behind the numbers in Indiana.  I don't want women to think they are alone.  I am defeating my incurable cancer every day.  Not by getting rid of the cancer, but by living life.

It is through the training I received from Cervivor that I felt confident enough to stand up in front of the two health committees and share my story.  It is through the outreach efforts of the American Cancer Society that I was invited to speak and attend the signing ceremony.  I share my story for those women who cannot.  I shared my story at the statehouse because I think it is important for a strategic plan to be developed to help reduce the rates of cervical cancer mortality and morbidity here in Indiana.  I want to help eradicate cervical cancer.
 
Do you want to help make a difference?  Cervivor School 2017 is coming up in June and I hope to see you there!

When Wylee was only five he asked the question you never want to hear, "is Mommy going to die?"  It was at that time that we started taking him to our local Cancer Support Community so he could get into a group with other kids who have parents going through cancer.  It has been two years that I have put off discussing this question with him.  Two years of hoping that the question would just go away.  Two years.

Today I was forced into a conversation with him about "what if Mommy dies" and I can honestly tell you it was one of the most challenging conversations I have ever had to have.  He is only seven, this isn't something he should have to worry about.  However, this is our life.  This is what we live everyday.  I had to be honest with him.

The conversation came up when we were passing a cemetery.  On the right side of the road was a typical cemetery with headstones, flowers, etc.  On the left side of the street was still part of the cemetery but it looked different.  There were trees and signs through out it.  It looked like a nice garden to take a stroll through.  Wylee asked what it was.  I told him that I thought it was a place for people to put remains if they are cremated.  He immediately told me he didn't like cremated people.  This brought up questions on my end, as I plan to be cremated.  I wanted to know why he was so scared of the idea and if he even knew what it meant.  He told me that he thought it was like a ghost graveyard for all the dead bodies.

This discussion led into the fact that I wanted to be cremated when I die and what exactly that means.  I told him that instead of being in a casket and buried in the ground or a mausoleum as he has seen with our family at previous services I would be turned to ash.  Thankfully he didn't ask how that process happened, I don't know if I was ready for that discussion.  He asked me lots of good questions about why I would want that, where my ashes would go and I thought we were finished with the discussion.

When passing through the same cemetery on the way home he asked me why I would want my "body shredded up" and I was confused for a moment until i realized that is what he was envisioning a cremation being like.  I told him then that I wanted for my body to be able to be spread in some place special to me.  Maybe in the water, he asked if he could take his kayak there and I let him know that was a great idea and exactly the type of attitude I wanted about this.  I want my body to live on in a place that I love.

We discussed that part of my ashes could also remain at home and we could pick out a special container for him.  His sweet little seven year old mind was worried that people might make fun of him.  He worried what would happen if he wanted to take me to school.  What would his friends say?  What would life be like?  While we were on this topic I told him that there were special people that could design things out of blown glass using the ashes and that we could get him a special necklace that contained part of the ashes so he could always have me with him and he wouldn't have to tell anyone if he didn't want to.  He was very happy with this option.

Our next conversation was why he was worried mommy was going to die.  He explained that he is worried that my cancer is never going to go away.  This is a legitimate concern, I've always been upfront with him about this.  I explained to him that right now he doesn't have to worry about that because there are a lot of medicines that are made so that I can spend as much time with him as possible.  I told him if it ever got the point that I was worried about leaving him we would talk about it again but until then not to worry.

I want to apologize to his teachers now.  I know that I have received phone calls at night before from teachers who were heartbroken at how Wylee explained my cancer.  I can only imagine what will be coming from him now that we discussed cremation and my cancer not going away.  I can only picture him later in life carrying around a necklace with my ashes.  I can only imagine.  I want to thank all the adults who are there for my son and allow him to express his genuine concerns and allow an open dialogue.  As you see, this is his normal.  This is our life.

He was sure to ask me tonight as I took my medicine if it was still working.  I'm thankful everyday for this amazing, understanding, and wonderful son I have.

This was the big week.  I had been waiting (not so patiently) without treatment since December 29th to allow my body time to heal and be ready for another round of treatment.  In my January PET scan there were four spots of cancer:  lower neck, upper chest, two abdominal.  Two of those spots were spots that developed in spite of my previous chemo and two were spots that had grown.  So, I was expecting my March scan to show growth.  I was prepared.  When I got the call last week to review my scan information I was not surprised to hear that the four existing spots had grown and that there were two additional areas of concern.  I was thankful to have the results so I didn't have to worry all weekend about what might have been, I like to know what the scan says.

Monday I met with my gynecologic oncologist so we could review all of the results and make a choice about what the next steps of the treatment would be.  He had taken my case to the cancer board on Monday morning, it is like an instant second, third, and fourth opinion.  The board developed some great ideas.  We discussed clinical trials, immunotherapy, and even reaching out to pharmaceutical companies to inquire about getting access to medications which have been proven to help with the mutation we found I have through my Foundation One testing.  We opted to start chemo immediately, Topetecan and Cistplatin, and continue searching through the other options as none of them are immediately available to me.  I told them that I wanted to start as soon as possible.  The meeting was Monday and now it is Wednesday.  I am laying in the chemo bed as I type this.  There was one hiccup, yesterday we found out that my insurance company would not approve me having Cistplatin and Topetecan together, it was a one or the other type of choice.  So, today I am getting Topetecan.  With this regimen I will get it once per week for three weeks in a row and then have one week off then repeat.  We will do this for three months and then do a progress scan to see how it is working.

So, how did I prepare for today?  I did what any rational person who is about to start chemo, AGAIN, I scheduled to go and get a tattoo on Tuesday night.  I had told my students that I wanted to get a robot tattoo.  It has a lot of significance to me, but that is for another post.  I am lucky enough to have had three other fabulous women who were willing to go and get the robot tattoo with me and we had an amazing time!

I don't have all the answers.  I have an unknown future.  I am tired of this cancer.  I met with my radiation oncologist a few weeks ago, I expected to walk in and develop a plan.  I thought he would say we could radiate the spot in my neck and the spot in my upper chest.  I was ready for the discussion as to if the other two spots in my abdomen were too close to the previous radiation zone or not.  What I was not prepared for is what happened.  When I met with my radiation oncologist I heard a different plan.  In his plan he wanted to wait a few months and see if the cancer grew anywhere else.  He told me that if we waited and it didn't grow, we would discuss radiation.  If we waited and it grew elsewhere then we would know radiation was not the right call.  He told me things I knew, such as if we radiate the area now we can't radiate it in the future.  He told me that if he radiates it and shrinks the spots I might not be eligible for a clinical trial if we find one.  He told me things I know and understand, but that doesn't make what he said any easier.

He wanted us to wait and see.  I still can't wrap my head around the idea of wait and see.  My cancer has proven, time and time again, that it isn't slowing down.  It is growing, spreading, and progressing.  It grew in spite of my year of Avastin.  Some spots grew a small amount even during heavy chemo, two new spots even developed during the heavy chemo.  Wait and see wasn't an answer I was ready for.  

After talking with my gynecologic oncologist we came to an agreement that we needed to give my body a rest from the chemo but that rest would not be as long as the radiation oncologist had suggested.  We agreed on one month.  During that month we are looking for clinical trials and completing genome testing.  We are trying to gather all of the information needed to continue extending my life.  Everyone agreed my body needed time to recuperate from the heavy chemo before I could start another treatment regimen.  It has taken me some time but I now understand the decision.  My next scan is coming up at the end of the month.  Best case scenario, we only see four spots of cancer.  Only four spots.

As we conclude Cervical Cancer Awareness Month #CCAM I wanted to give an update to my family, friends, and readers.  I had my last scheduled round of Carbo/Taxol chemotherapy on December 29th, 2016.  We waited the appropriate amount of time for the treatment to be completed and I had a PET scan on January 27th, 2017.  I awaited the results via email, but they never came.  It is not completely uncommon to not receive them via email, especially if the doctor has additional clarifications to get, but it still makes me nervous.  I was very anxious, worried, and nervous heading into my oncology appointment today.  It is extremely stressful when even getting good results on a scan still means that I have cancer. 

Today I got what most would consider good results.  Does that mean I am cancer free?  No.  The way I look at it we are chasing the cancer.  Trying to be one step ahead of it at all times, but still chasing the cancer.  Our goal continues to be for me to be able to live my life to its fullest while still considering quantity of life.  My October scan showed that I had twelve cancerous areas.  I had convinced myself that not only would this scan show they were still there but that it would show additional areas.  Thankfully I was at least partially wrong.  Of the twelve areas ten of them are gone!  Woohoo!  There are also two additional areas which have appeared during my treatment and the two left originally did grow a small amount.  That leaves me with four areas with cancer.  As you see, a good scan is still a scan with cancer.

If you are into all the medical jargon, here is where the spots are specifically:

• 15 mm lymph node at the base of the neck on the left side, supraclavicular SUV 8.8 (new spot)
• 12 mm lymph node in the upper chest on the left side SUV 5.5 (new spot)
• 10 mm lymph node in the mid abdominal retroperitoneum between the aorta and vena cava SUV 6.4
• 8 mm x 10 mm lymph node lateral to prior abdominal node SUV 6.2

If you made it through all that medial information.  Thank you for continuing to read.  It is helpful for me to reference the specifics from time to time and the blog is a great place for me to quickly glance back.  You might be wondering, what is next?  Well there was discussion about radiation, clinical trial research, and eventually more chemo.  It was determined that my body needed a break from the chemo and I should be receiving a phone call regarding the next steps tomorrow once my gynecological oncologist can conference with my radiation oncologist.  I have a great team and I am looking forward to moving forward with treatment.

As #CCAM comes to a close please remember that I share my story with you because I want you to take care of yourself.  I don't want another woman to be in my footsteps.  If you are already dealing with cervical cancer or a survivor I want you to know you are not alone.  Cervical cancer can be eradicated through annual well woman exams, Pap and HPV co-testing, and HPV vaccination.  Know the facts.  Educate yourself.  Eradicate a cancer.

January is Cervical Cancer Awareness Month #CCAM.  If you are here on my blog, you most likely know my overall story.  If you don't, I urge you to take a moment and read my story here.  Today I want to talk to you about something that has been weighing on my mind.  Cancer shaming.  If you are my friend or family member you will probably be shocked to hear that women are shamed for having cervical cancer.  I hope that you have been exposed to it enough, through my efforts and those of many other strong women, that you don't have any negative conotations related to cervical cancer.  This, however, isn't always the case.

I have sat in countless groups, meetings, and conferences related to gynecologic cancers and heard women expressing that they didn't feel comfortable talking about their cancer.  They felt embarassed and even ashamed to have a below the belt cancer.  I can honestly say sitting and hearing these women express the shame was a new concept to me.  I had talked about my cancer from the time I was diagnosed.  Since I was first diagnosed in 2012 I had never received any negative responses from family or friends, at least none that made their way back to me.  I continue to be grateful for the support that I receive.  Over the past few weeks I experienced the first time that an individual I know had something negative to say about my cancer experience.  I was horrified and offended.  I also, for the first time, understood where the women were coming from who were ashamed of their cancer.

The individual insiuated that if I had only been more proactive, more careful, somehow done more I wouldn't have cancer.  I know, logically, that I did everything within my control to not have cancer.  I had abnormal pap tests for years before I had cancer and I always gone to my follow up appointments, even when I had to go every six months for multiple years.  I had the procedures done to remove any cells my doctor recommended.  I did everything I was suppose to.  I still got cancer.  Is that my fault?  Absolutely not.  Does that mean that preventative care doesn't work?  Absolutely not.  Let me be clear, I am a strong advocate for the annual well women exam, HPV and Pap co-testing, as well as HPV vaccination.  There are measures you can take to help prevent cancer.  The more measures you take, the less likely you will be to develop cervical cancer.

Over the past few weeks I have been analyzing why I was so offended at the words this individual spoke.  Firstly, I felt like I was offended because obviously they don't pay any attention to the information I spread (or else how could they insiuate I did something to cause my cancer).  Then I thought I was offended because they were essentially blaming me for having cancer, something which shouldn't happen to anyone.  Finally, I realized I am most upset because I don't want anyone saying something like that which my son could eventually hear.  I am terrified that I am going to die of this cancer, this cancer that isn't going away.  I am more terrified that my son will hear things from individuals that make him think I had cancer because I didn't do enough to not have cancer.

I want my son to not be ashamed that his mother had cervical cancer.  I want him to be educated enough to know that the majority of the population will have HPV at some point, including his mother.  I want him to know that although HPV can cause cancer there are steps to prevent those cancers, namely recieving the HPV vaccine before any intimate contact.  I want him to remember me as someone who spoke up and made a difference.  If I die from this cancer, I hope that my son is able to talk about his experiences related to my cancer.  I hope he is proud to say that I advocated for awareness and helped other women with cervical cancer.  I hope shame of cervical cancer is never even on his radar.

All cancer is hard and brings along with it things that most young adults never even think about. My cancer experience started in October 2012 when I was first diagnosed. At the time I underwent my first cancer related surgery I was under the knife for 14 hours. I remember the hospital asking me at my intake if I had a living will. I had never even considered needing one, it was at that moment that I realized it was something I needed to do. Fast forward to my first recurrence in April 2014, I was hospitalized immediately and during my intake you can guess what they asked me. When they brought up the living will again I sheepishly told them no, I didn’t have one. Onward through treatment I never took the time to create one. When round three of cancer hit me in 2015 I was asked again, at this point I was well versed in making jokes about not having my living will taken care of. As many of you can understand, I didn’t want to think about dying. I didn’t want to think about the possibility that any of these cancer surgeries could have a freak accident and result in my never waking up. I didn’t want to think about it. I am young, invincible, and I shouldn’t have to think about what happens if I die (even if I have cancer).
Attending First Descents gave me many gifts, one of them was an outlook on the rest of my life. I realized one night while in West Virginia that having a living will didn’t mean I was going to die. It meant I could live more freely. It meant I didn’t have to worry about what would happen when I was gone. It was a weight lifted off of me, as an added bonus I didn’t have to be embarrassed anymore when the hospital or doctor asked if I had it taken care of.
Upon return from my FD1 experience one of the first things I did was talk to my husband about the fact that we needed to get this taken care of. He scheduled a meeting for me with an estate planner, I quickly named her my death lawyer. When I went to meet her we talked about all of the things that I felt like a young adult shouldn’t have to talk about. There were a lot of words thrown around like beneficiaries, estate trust, medical power of attorney, financial power of attorney, and even funeral planning. I thought it would be scary and depressing. I even told the lawyer that I had dubbed her the death lawyer. She told me that she liked to think of herself as a life lawyer, because she helps plan things for you so that you can live your life. That is what it is all about right? Being able to live our lives and be out living it!
So, have you taken the time to meet with an estate planner and organize your living will? I know that I felt like I didn’t have any assets when I walked in to meet with the lawyer. When she asked me if there was anything of any value that I wanted to leave to anyone specific literally the only thing I could think of was my white water kayak and gear. If you have been on white water you will totally understand this! It wasn’t until a week later that I realized I had many other things of value that I should leave to people, but hey the kayak was my first thought!
If you don’t have your living will yet, first, please take the time to find an estate planner to help you. After you find your planner, take a few minutes and consider the following:
1. What type of financial assets do you have? – Consider life insurance policies, bank accounts, retirement accounts, stocks, bonds, and any other type of financial assets. I completely forgot about a life insurance policy I have until months after I created my living will, by thinking about this before going you will have a better chance at thinking of all your assets.
2. Who do you want to be your beneficiary and financial power of attorney? – Think about which two people would you want to manage any financial assets. My first person was easy but I really had to think about who I would want to name as my second person in the chance that my first named person wasn’t available.
3. What physical assets do you have which you want to name to specific people? – Do you have any assets that you want to ensure go to a certain person? The living will is the place to let your wishes known. These physical assets don’t have to be big and expensive, they can be something sentimental that you want to ensure your best friend gets. My estate planner left a place in my binder where my will is located so I can add to this as I think of things I would want people to have.
4. Who do you want to have as your medical power of attorney? – Think about what you would want your end of life care to look like, then think about who you believe would actually follow through with those plans. – I opted for two people here too. My husband is one and a friend is the second. I felt that my family wouldn’t be able to actually follow my end of life wishes so I had a conversation with the friend to ensure that she knew exactly what I would want and where to find the documents if it ever came to it.
5. What do you want your services to look like when you die? – Do you want a funeral service, cremation, open casket, closed casket, celebration of life, big service, small service? What about flowers, music, donations? What do you want it to look like? All of these are pieces to consider when planning what you would like your services to look like. This is an ongoing discussion point for me. I know there are things that I absolutely want to happen and others I know I do not want to happen. I have even met with a funeral director to find out options.
So there you have it, some things to consider so you can be prepared when you go to plan your own living will. I hope that you have an amazing estate planner, death lawyer, or as I now refer to mine life lawyer. I hope that getting your living will together lifts a weight off of your shoulders. A weight you might not even realize is there. I hope that it helps to facilitate you in your goal of out living it!