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!

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.