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Plan 3.0

6/30/2015

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We found out Monday that we will not be moving forward with radiation for our treatment plan for the newest recurrence that I have.  Here you can see my little helper, who happens to be dressed as an elf in June, helped with removing my radiation markers for me on Monday night.

Monday I got the phone call that we would be going the route of surgery due to the fact that we have already hit 1/2 of this lymph node with radiation and they don't believe radiation alone would get rid of it.

Today I called with some questions to get some more information.  They are still working to move things around and get me scheduled ASAP.  The surgery is an inpatient surgery which will be primarily performed by my gynecologic oncologist and there will potentially be a urologist in there as well.

There is discussion about other treatments if needed after but as for now we are planning on the lymphectomy surgery and seeing what it looks like once they get in there.  I can look forward to a 6-8 inch scar starting at or above my belly button and moving down.  Can't they do a tummy tuck while they're in there?

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Reflecting...

6/28/2015

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As I read through a history of our time together on Facebook today I saw this message.  This was posted a year after my first surgery.  Little did we know at the time of this post my recurrence was already taking over my body.  We hadn't found the tumors or lymph nodes yet.  I didn't have any signs or symptoms yet.  I didn't know I was sick.  That is what is funny about cancer.  You can go about your normal life for months, years in some cases, with cancer and not feel sick.  I didn't know before I was diagnosed with cancer that in most cases it is the treatments that really make you feel sick and look like "a cancer patient".  Some of us never look sick, sometimes what we feel is all inside and we look fine on the outside.

I always thought it was funny when people would say to me, "you look great, not what I expect a cancer patient to look like".  I don't really know how to take those type of comments.  Looking back at pictures there are definitely times I looked "sick" and times I just looked like I was choosing to be bald.  Oh and when the hair started to come back it was really questionable to people.  Sorry, I sort of got off on a tangent there.  That is a post for another day.

I read through this post from my husband and it made me sad.  His loving words expressing what it feels like when you find out the cancer is gone are so on point.  It was like the weight of the world was lifted from our shoulders.  Then I think about it, now that I am facing my third occurrence of cancer it is very much like the weight of the world is on our shoulders.  Not knowing what the next step is in treatment is weighing heavy on my mind tonight.  Tomorrow morning, while I am still asleep hopefully, the panel of doctors at the hospital will discuss my case at the cancer board.  Tomorrow morning they will hopefully determine my treatment plan.  There is a lot of hope in this house tonight.

We had a fabulous anniversary celebration today.  Today we didn't think about cancer, we just enjoyed the day we had together as a family.  We went pedal boating on the canal here in Indianapolis and went to SubZero for some ice cream as a family.  It was an awesome way to celebrate our 1st anniversary!

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1st Wedding Anniversary

6/28/2015

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Today we celebrate our first wedding anniversary.  I am thankful to be able to reflect on the past year.  It has been a wild ride full of outside forces acting on our family, namely the cancer treatments.  In June 2013 we were engaged to be married.  We started planning our wedding for June 28, 2014 with all assumptions that I was healthy and all would be normal.  Well, nothing about our story had really ever been normal so I am not sure why we expected this wedding planning would get to be normal!

Ten months into our wedding planning we officially had a diagnosis of an aggressive recurrence which would take extensive treatments.  Did that slow us down?  No!  Although we had to make a few changes, cancer does not get to define our lives.  Therefore, we went on with the wedding as planned.  Looking back there are things we never thought we would be dealing with during our wedding.  I had one specialist, my urologist, who had to agree that I could unhook my nephrostomy tube long enough to get married, take pictures, and enjoy a little bit of the reception unhooked from my bag.  Out the window went all the Pinterest worthy beautiful long hair styles I had been pining over for months, I was now bald.  Bald and beautiful I might add, it was definitely hot outside and I didn't have to deal with all that hair!  We had a family friend, only two days before the wedding, whip up the most stunning head wrap I've ever seen which I used for the ceremony.  We changed our wedding favors and got cervical cancer support wristbands for everyone.  We had to postpone our honeymoon due to the fact that I had another round of chemo two days after our wedding ceremony.  The oncologists frown on trips to Mexico in the midst of active chemo treatments, especially when your blood counts have been so low you've already spent a week in the hospital!

In spite of all that, we had the most fabulous ceremony I could have ever imagined.  I only wish we had a close up video of our vows.  My husband and his groomsmen surprised me with a song.  It was the longest wedding ceremony I've ever been to that was not a structured religious wedding ceremony and it was so us!  We wrote our own vows and didn't share them with each other until the ceremony.  We did a unity painting, which was a fabulous time, and I got to marry the love of my life.  Here's a link to our wedding site if you want to see more pictures from our special day.

Today we are going to go out a celebrate, in spite of the cancer, in spite of the worry that weighs on us daily while we wait on a treatment plan for this recurrence.  We are just going to celebrate!  We are going to celebrate for the past years we spent together in college.  We are going to celebrate for finding each other again after years apart.  We are going to celebrate our past year as a family.  Most of all we are going to celebrate for our future together.

I challenge each of you to do something today to make someone else smile.  I'd love it if you posted a comment here and let me know what you did to make someone else smile today!

To my husband, JR, I love you more than you could ever know.  You are my partner and support system.  I don't know what our family would be like without you (although he will never read this because my blog makes him cry).
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Testimonial Day

6/26/2015

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Today I had an amazing experience.  I was able, through a web of connections, to go into Roche and do a patient testimonial in support of cervical cancer awareness.  I can honestly say it was one of the most rewarding and challenging things I have ever had to do.

I was able to tell my story in hopes of reaching and helping other women.  When the video is complete they are going to get a copy for me so that I can post it on the blog and also I will link you to the other patient testimonials which have been completed.  We all have a different story and path; we have all been touched by HPV and/or cervical cancer.

I think the hardest part was when I had to talk about how my cancer impacts so many people other than myself.  I talked a lot about how it impacts my son and husband, however, I also talked about how it impacts my parents, siblings, grandparents, and friends.

I went in with one message to tell and it evolved into so much more.  I cannot wait to see the video that comes from today's experience.  

One takeaway?  Trust your own body, you know your body better than anyone else.  Know what tests are available to you, If your doctor doesn't believe you or dismisses your concerns get another doctor!   

As always, if you have any questions about HPV, cervical cancer, screening/testing, or women's health in general please reach out to me. If I don't know the answer I can work through my network and try to guide you.  Ask for the HPV test to be given along with a Pap.  The HPV test can determine if you carry the high risk strands which are known to cause cervical cancer.


I'm still waiting on a treatment plan for the newest recurrence, hoping for more information after the cancer board meets again on Monday.  I'm special, they like to talk about me on cancer boards apparently ;-)  More information to come!

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Waiting Game

6/23/2015

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I'm tired of the waiting game. Three weeks ago I had a PET scan. On that PET scan it was determined that after only three months I had another recurrence.

One week I was on vacation, the next week I met my gynecologist oncologist who differed treatment to my radiation oncologist, he was out that week. Last week I saw my radiation oncologist and we discussed a promising treatment plan. I had planning scans on Tuesday. Friday I still hadn't heard from the doctor so I called. He told me the scans determined that my new cancerous lymph node was too close to the previous radiation zone and we couldn't go with a traditional treatment plan.

He mentioned the possibility of stereotactic body radiotherapy. It's a high dose direct treatment of that spot with no margins. 5 to 10 sessions. He said he hoped to know more Monday.

I called Monday. The nurse talked to the doctor and said I'm top priority and that he is overlaying the scans again to look for the best treatment option. I asked for a timeline. She did mention that we will have another face to face before we select a treatment. I'm just ready to get started.

Here I am Tuesday night, no answers. I want answers. I have a full week which should hopefully distract me. Tomorrow is my son's sixth birthday and Friday I am going to do a patient advocacy video which I'm so excited about.

I hope to hear soon what we will do. I can't help but be scared that it's taking so long to find a viable treatment plan. However, I'm also thankful I have such a large team of specialists working on finding the best treatment option.

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Round Three…Lets Go!

6/15/2015

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I met with my radiation oncologist this morning.  I was in the waiting area when he walked in and I asked that we review my scans so I could see them today during our appointment.  I went in and got all the basic nurse details complete and when he came in he took me straight to the back to review my scans.  He had everything cued up so we could compare scans.  We started with the scan when I was diagnosed with my recurrence last April.  He showed the area which was impacted by the tumor.  Next we took a look at the scans from 2014 late summer/early fall right before we started radiation.  Our third scan was post treatment when the PET scan identified me as NED (no evidence of disease).  This scan was in March.  Finally, we took a look at the most recent scan from the end of May.  He showed me the active lymph node and he explained this was the anticipated path if the cancer were to come back.  The cancer board (weekly panel) discussed my case and feel that treatment is pertinent.  

We are exploring possibilities for treatment including radiation only or radiation and weekly chemo.  I am scheduled to go in tomorrow and get more scans completed at 7:30 in the morning.  My radiation oncologist will consult with the nuclear doctor to ensure that this newly impacted lymph node is in fact above the previous radiation level.  If all the specialist agree we will start treatment as soon as possible.  It seems each new diagnosis adds in a new specialist.  I didn't even know the nuclear doctor existed before today.

I keep thinking, "now is not the time to be unique".  My body seems to follow its own unique path.  It shouldn't have been back according to all the lymph nodes removed and tested back in 2012 when I was originally diagnosed and had my trachelectomy.  It shouldn't have been so aggressive to reek havoc when it did come back and was finally caught in April 2014.  It most definitely shouldn't be back this soon post treatment, and yet it is back.  I have to accept that it is in fact back and is time to fight again.

I have been kind of out of it today.  My husband has been great today, he got to view the scans for the first time.  He wasn't with me at the appointment when I reviewed them with my radiation oncologist the previous time.  He took me to the Cancer Support Center near our house so I could touch base in there.  I have tried a few times to really embrace the Cancer Support Center but I just can't get into it there.  Last year there was a young adult group I met with but no one had dealt with cervical cancer and the loss of fertility. This year the young adult group has sort of died out, which is probably a bad term to use.  I don't mean they have literally died just that they don't really meet as a small group anymore.  The members meet in a woman's cancer support group weekly.  I might try out the group, but I might continue my path with the support of my family, friends, and fellow Cervivors.

I have had the opportunity via Facebook to connect with a group of women who have dealt with "Teal" cancers.  These are all cancers which impact cervix, uterus, vulva, etc. Recently I have been able to start networking closer to home.  During my previous treatments I was able to "mentor" a fellow woman my age going through cervical cancer.  We were able to connect at chemo and help each other through.  More recently I have made connections through a series of networks which led me to the Cervivor site. I am so excited to be able to attend Cervivor School and make face-to-face connections with other women who have fought this battle!  I am eager to really get involved in advocacy on a bigger scale than I have been able to at this point.  I encourage any fellow "Tealies" to checkout Cervivor School and see if it is something you might be able to attend.

I always hope that my story can help women, of all ages, know what signs to look for and get support and/or treatment.  I think it is important to understand the warning signs of cervical cancer and know what resources are available.  It is time for me to fight, again.  Let's do this!

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Vacation is Over…Time for Real Life

6/8/2015

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We had a great time on vacation.  We started out on Monday with a pool day.  Tuesday we went to the T-Rex Cafe in Downtown Disney, Clearwater Aquarium (home of Winter and Hope the dolphins from Dolphin Tale), an off site facility with movie sets, props, and a faux hurricane that we could walk through, ending the day at Pier 60 on the Gulf in Clearwater.  Wednesday we went to Magic Kingdom for fourteen hours.  Thursday was laid back, we spent the eventing at the Cocoa Beach Pier playing in the waves and building in the sand.  Friday we went to Lego Land which was fabulous!  If you are in the area and have children around Wylee's age I would highly suggest it.  Saturday we went kayaking at Shingle Creek in the Everglades and were lucky enough to see a wild ten foot alligator and a small two foot alligator in addition to several turtles, fish, and other wild life; we ended up the night by visiting with some family members I hand't seen in sixteen plus years.  Sunday we took a walk across the Big 5 waking bridge from Jeffersonville to Louisville with some friends and let the kids play in the splash park.


Today I met with my oncologist. The cancer is back. It's localized to one lymph node. He said I will probably never be a patient that goes to one year visits because it shouldn't keep coming back like this. Thankfully looking at just radiation this time. I meet with my radiation oncologist Monday morning. Third time's the charm?

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Time to Survive Round Three

6/1/2015

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Well we are here in sunny Orlando, Florida!  I was able to talk to the nurse, they reviewed the scans together today. It's cancer. It is outside the previous radiation field so the plan is targeted radiation. I have my gynecological oncologist appointment Monday the 8th & radiation oncologist appointment Monday the 15th and then we will start treatment. There's no plan for chemo this time. Radiation should be done before school starts, if not I can work through radiation.

This week is going to be the best week ever!  We have already spent a few hours in the multiple pools which can be seen from our balcony and we can't wait for the rest of our week.  We have lunch scheduled for T-Rex Cafe tomorrow, one day at Magic Kingdom, one day at Lego Land, a day at the beach and all sorts of fun adventures!  We are making up for lost time last summer and now future lost time this summer since I will be back to radiation.  We will definitely be making the most of it!

Lets beat it round three!  #3xCancerBefore30  #cancersucks #cervivor

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Time for a regularly scheduled PET scan...

6/1/2015

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I'm sitting here waiting. Waiting for results again. On Tuesday, May 26th I had a PET scan. This was a regularly scheduled PET scan, we are doing them every three months right now. My March PET scan was all clear so it was expected this one would be as well.  I went through all the motions of the scan: get the radioactive injection and sit in a quiet room for a hour and half, lay in the PET scan tube for 45 minutes, get the lasiks infection, wait another 45 minutes then do a quick 20 minute scan.  I really believe you should get to listen to music during these scans. You lay there in silence, with only the buzzing of the machine, and imagine. You imagine what it will be like if you have cancer, again. You wonder if you could work through treatment to keep from going crazy. You imagine what all could go wrong. You should really have music to distract you.

I emailed my nurse to follow up Wednesday morning. At 4:15 pm I called her because I hadn't heard from her. She told me that the doctor had been scheduled to review my scans at 6:30 am on Thursday and then she could call me with results. Normally she reviews them and gives me the news if it is good. I was nervous.  I asked her if my follow up appointment I had scheduled for June 8th would be with the nurse practitioner or Dr. Callahan. She told me I'd see Dr. Callahan, this was a change. I had been scheduled to see the nurse practitioner.

When I talked to the nurse on Thursday she told me the news. There's an active lymph node which wasn't active in my March scan.  The lymph node is located behind my duodenum. Then duodenum is located in the GI tract at the bottom of the stomach/top of the small intestines.

I'm on an airplane right now heading to our first family vacation. We used the flight credit we had from the honeymoon we didn't get to take (due to being in the midst of treatment for cancer round two we had to cancel our honeymoon).  We are so excited to go to Orlando and surprise Wylee with a day at Disney, a day at Lego Land, and a special lunch at T-Rex Cafe in addition to the beach and pools.  It's time for an awesome week!

The nurse said my case was going for review early this morning (Monday, June 1st) and I should be able to talk to her soon and have an idea of our next steps.

Here I am, holding pattern. Nothing to do but sit, wait, and gear up in case I need to fight round three.

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    Author

    Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer. 

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