May is Celebrate Oncology Nursing Month and this week it was specifically recognized at the hospital I receive my treatments at.  There are so many amazing nurses I have met since I was originally diagnosed in October 2012.  Due to the fact I have basically been in ongoing treatment since May 2014 it is really difficult to pick just one story to talk about to share how special these nurses are to me.  I spent my 29th birthday in the hospital, we celebrated together.  As life would have it, I also ended up spending my 30th birthday in surgery and a hospital bed at St. Vincent.  I arrived to my room on my 30th birthday to an amazing sign and "celebration" with my oncology nursing staff.  That will bring a smile to your face, even if you have a tube going down your nose into your stomach and a wound from breast to pelvis!

I can think of countless times that my oncology nurses have been there for me.  One year the oncology floor provided an amazing Christmas for my entire family.  I spent multiple holidays in 2014 in a bed on the oncology floor, celebrating with the amazing men and women of St. Vincent Oncology.  I have a set of paper flowers still in my bedroom which I received when my blood counts were to have live flowers.

However, there is one nurse in particular I would like to talk about.  Lindsey is not just a nurse in the chemotherapy room, she is also a friend.  We have a bond, you see, we met not in a nurse patient setting but as two young women going through cervical cancer treatment.  To set the stage a bit, I was going through Carbo/Taxol/Avastin during my first reoccurrence and at my second treatment one of the nurses approached me and told me that one of their own nursing staff had been diagnosed with cervical cancer.  They asked if I would "mentor" her a bit since I had been through a diagnosis before and was in active treatment.  It just so happened that many of our treatments overlapped and we were able to spend what could have been an isolated time together in our treatments.  We were both going through aggressive treatments with opposite plans.  I had aggressive chemotherapy treatment first and radiation/chemotherapy second and she had the reverse treatment plan.  I use the term mentor loosely, Lindsey had a plethora of knowledge of her own due to the fact that she was an oncology nurse.  I have spoke of Lindsey often and how difficult I think it must be for her, especially during treatment, knowing what cancer can do due to her job and having to receive treatment firsthand. It was very nice to have her there and to be able to have each other.  Today we got to compare pictures of our hair growth compared to last year this time, so many little things that others don't understand.

We share not only a diagnosis but an oncologist, the amazing Dr. Callahan.  We have mirroring stories in some ways and in other ways I hope our stories are never mirrored.  I hope her cancer story is finished here.  I hope she never has to cope with a recurrence.  It is great to see her now every couple of weeks when I go in for treatment and to see her back to work and loving life.

As May is wrapping up, have you celebrated your oncology nurse yet this month?  I challenge you, take the time and send a quick note of gratitude. 

There is so much to say about Stirrup Stories I cannot fit it all in one post.  It was such a spectacular event!  If you aren't sure what Stirrup Stories is, please take the time to check out my blog post pre-event.  I headed off to DC last Thursday with my script in hand preparing for the evening.  An evening that was organized as a benefit to celebrate ten years of cervical cancer advocacy by Cervivor.  It was AMAZING!  There will be more posts coming about the event, such as pictures, a video of the event, and lets not forget the fact that I got to meet the family members of Henrietta Lacks!  I wanted to take the time to share with you the script I used to rehearse for the event.  I will admit that when I walked on stage I sat the script down and therefore went a tad off script but it was so amazing.  When I talked about defeating cancer by the way I live my life you should have heard the cheers!  Tamika, Cervivor Chief Visionary, is still getting calls mentioning parts of the stories shared.  It is so powerful to hear that our stories are making a difference.


Time. How much time do I have?  I have cancer now, today, and there is no end in sight.  If you look at me, I don’t look sick.  I don’t look like what a cancer patient is “supposed” to look like.  In fact, I look 1,000 times healthier than when I was going through aggressive treatment.  But, do you know what?  This is a face of cancer.  This is what cancer can look like.
  I was first diagnosed with cervical cancer in 2012, I had a trachelectomy. It came back.  I had chemo and radiation.  It came back.  Where I stand today, I have cancer. It isn’t going away.  It’s cancer, that I live with.

The third time I was diagnosed with cancer, we opted for a surgery to remove it. After the recovery, I was gearing up for more radiation and had a PET scan.  That scan would change the course of my life and treatment.  That scan, similar to others before it, revealed that there was more cancer.  However, this scan was different. I found out the cancer was in seven areas, including my pelvis and now, due to previous treatment, it couldn’t be treated with radiation. This PET scan was a deciding moment in time.  We could move forward and attack cancer aggressively, a cancer that isn’t making me feel sick, a cancer that is just inside of me.  This aggressive treatment would make me more sick then the cancer.  Or we could switch courses.  We could transition into a treatment to maintain the cancer at the size it is and stop it from spreading.  A treatment which typically works for a while but sometimes does not.  This would allow me to live my life more on my terms: I can teach, coach, parent, advocate, and live my life with my family and friends.  It gives me a better quality of time, but not necessarily more time.  This is a plan that means coping with the fact that I am not trying to cure my cancer.  It means living with cancer.

I have been asked, what is your timeline? I wasn’t given a timeline.  I never asked for a timeline.  Any time that I ask my doctor what happens next he assures me that we have additional treatment options if the cancer gets worse.  This is not the end.  This is just a phase; a phase in time.  I know women who have been on this treatment for years, maintaining cancer and I know women who couldn’t make it through a full round of treatment.  It means I live my life in three to six month chunks, the months between scans.  During this time, I have to mentally think that the treatment is working.  Each scan brings new information. Each scan brings the possibility that I will get thrown back into aggressive treatment.  Each scan brings the possibility that the cancer has progressed.

I am a planner; this has been the hardest part of living life with cancer. I like to know what I am doing three weeks from now on Tuesday at 5:00.  I like to know that I can schedule a vacation, girl’s night out, bowling with my son, or even just plan to be at work and that I will actually be able to follow through with those plans.  On a day-to-day basis I don’t know what I am going to be able to do.  I would like to be able to plan a night out with my husband, and know that I am going to have the desire and ability to have sex. Cancer took that away from me. I can’t plan the big things either.  My husband wants to talk to me about buying a house, I can’t even imagine buying a house.  My work wants to talk about a leadership position, I would love one but it is hard to even mentally sort out what I have time to do.  What if next month I end up in the hospital?  What if I am no longer able to work?  What if I die?

Well, there it is.  What if I run out of time?  I am not really afraid for myself when I die, I am afraid for my family. I am married to a wonderful supportive man who has taken on full responsibilities for being a father to our son.  However, if I die he has no legal rights to our son. I have full custody of my son and his biological father is only allowed to see him during supervised visits.  If my time runs out, he holds all the cards.  My husband would lose not only me, but our son as well.  My son would lose his mother, and the man who he sees as his father.  I am terrified of what I will be leaving behind if the treatment stops working.  I am terrified of running out of time.

Many people voiced their concerns about my treatment, those people don’t live in my shoes or see how the aggressive treatment tore apart my body.  They weren’t here to see me sleeping 16+ hours a day, they didn’t see me in the hospital for a week, every three weeks.  They didn’t see.  Many people don’t understand how I can cope with not having a curative plan, with not having a timeline.  To be honest, some days I agree with those people.  Some days I question if I made the right decision.  If I made the right choice to put quality of time ahead of quantity of time.  On those days I try to remind myself of the following: look around, look at what you are doing.  You are living your life and not holding back. Although it may be inside your body and not going away, you are most definitely defeating cancer by living your life!

I AM the face of cancer,  but I AM not NOT out of time.

Have your heard about D.C.?  There is an amazing thing happening next week!  I can barely believe it is this close and I am so eager with anticipation for the event!

Stirrup Stories:  Narratives Beyond the Speculum is going to be held in Washington D.C. at the historic Howard Theatre in Washington D.C. on Thursday May 12th from 6 o’clock to 10 o’clock in the evening.  Tickets are available here and if you are anywhere near D.C. this is an event to come and see!  The evening will include a benefit performance, reception, dinner and dancing.  

Cervivor will be celebrating 10 years and beyond of cervical cancer advocacy.  This event is going to feature women, including myself, from across the country.  We will be sharing our #StirrupStories on stage.  The show will consist of a variety of women creatively performing experiences with their gynecologic health through: storytelling, comedy, poetry, art, spoken word, monologues, and more. It promises to be an amazing evening!

The event will be hosted by Magic 102.3's Michel Wright and includes a musical performance by platinum-selling musical artist Keke Wyatt. Special guests include Traci Braxton star of WEtv's Braxton Family Values and Sarah Fraser from HeyFrase and Fox5 WTTG.

I am beyond excited to be able to be a Cervivor Ambassador and take part in this great event!  I really hope you will take the time to check out the information about Stirrup Stories and Cervivor.

Are you a cervical cancer patient or survivor?  Have you shared your story yet on Cervivor?  Our stories matter.  It is our faces and stories which are going to be the difference in the future.  We can eradicate cervical cancer.  The medical advances are here, the time is now.  Share your story!