Bittersweet: A Vulnerable Photographic Breast Cancer Journey

I am putting the final touches on my book, Bittersweet: A Vulnerable Photographic Breast Cancer Journey, to get it ready to go to the publisher next month.  I never intended to write a book and share the photos that my husband Wiley took of my breasts until a fateful meeting seven weeks after my double mastectomy.  I was attending the Lavender Inn's Inncourage cancer retreat and met Nicole Jones.  She inspired me to share my story.  Here are a couple paragraphs from that chapter.

  • Chapter 3
  • Total Double Mastectomy
  • November 27, 2015

             I was seven weeks post double mastectomy and felt self-conscious about how I looked.  Nicole Jones, a vibrant, young, mom of two teenagers introduced herself and shared that she was a couple weeks away from a double mastectomy.  Once she realized that I was newly recovered from a double, she asked if I would show her my scars.  To that point, I had only shown my mother-in-law and two sisters, so I wasn’t sure about showing someone I had just met.  Nicole told me that she was very scared about her pending surgery and that was all I had to hear to agree. 

            My other new friend, Martina Albert wanted to know what they looked like too.  We walked into the pantry off the Lavender Inn kitchen for a little privacy and I removed my shirt.  Nicole’s hands immediately went to cover her mouth.  I took that as a bad sign, but Nicole let out a sigh of relief and said, “That’s not so bad.”  It isn’t?  Both she and Martina were so positive and supportive toward the two enormous scars blazing across my chest.  Nicole said, “I can totally do this.”  It was the moment when I realized that I didn’t actually look like Frankenstein and that I could share what had happened to me to help other women.  The idea for my book, Bittersweet, was born right then and there.  Thank you, Nicole.

Thanks for reading, more coming soon!  Now I need to get back to designing the book cover, editing, formatting, and planning my book launch.  See you there!  Saturday, October 6, 2018 at the Ojai Valley Woman's Club in Ojai, CA.  Ticket and event info coming soon.

 

Longterm Goals & Cancer

It has been two and half years since I was diagnosed with breast cancer and I am still happy to report that I currently have no evidence of cancer.  Woot woot.  I have been working non-stop on editing and designing my breast cancer book, Bittersweet, and preparing the marketing materials needed for my book launch. 

I have decided to launch my book during Breast Cancer Awareness Month this October.  So, save the date, Saturday, October 6th, 2018 to join me in Ojai, California, for my book launching party. On top of all of the book planning, we are also selling our house and planning a move out of the area.  I hadn't even realized the significance of all of this activity until it struck me the other day.  I am making long-term plans again.

This might not strike you as odd, but when you have lived through the threat of cancer it puts your whole life on hold.  You stop making plans, especially big, life changing plans.  For one, you don't know if you will be around to complete all of your plans and two, you are just too darn exhausted to take on anything else while going through cancer.  Even after I recovered, there was a good amount of time that I just wanted to chill out and not have any big obligations.

I must really be getting my energy back, because all of a sudden it feels really exhilarating to realize that my whole life is once again ahead of me.  Without even knowing it, I put my fear aside and decided that I was not going to let it get in the way of my future life.  Could this all come crashing down around me at some future date?  Sure, but that is just not a good enough reason not to live life to the fullest right now. 

Our son, Vance, will be eighteen years old later this year and it really feels like it is time for Wiley and I to ask ourselves "what do we want to do?"  I want to get my book out in the world and move to a new city and put down new roots.  I want my world to get just a little bit bigger, now that I know how small it can get.  Life comes with so many challenges, but it is up to us to pick ourselves up and keep on moving forward.  I am so excited to be moving forward and once again making big plans.  What big plans have you been putting off?  

But, You Look So Healthy!

I needed to take a little time off from my blog to finish my book, Bittersweet, (coming soon)... and then before I knew it, it was the Holidays, and then I had another surgery, and then it was 2018!  Life happened and my Blog went on hiatus, but I am back to share my life after breast cancer!

Just yesterday, after a conversation with someone where I revealed that I was a breast cancer survivor, she looked at me perplexed and said "But, you look so healthy?!"  I get that a lot.  Maybe, because I am smiling, laughing and living or maybe it is because I get up, do my hair and makeup, put on something I feel good wearing and I keep going as if it never happened.  But it did.  

The funny thing is, a lot of us were really healthy when we were diagnosed with cancer.  I had lost 25 pounds in the year before I was diagnosed.  I was eating organic, doing yoga a couple times a week, swimming laps and really happy in my life.  I would have definitely considered myself healthy, but there was a tumor growing in my left breast threatening to take away my life and challenging the notion of healthiness.

I don't know why I got breast cancer.  It wasn't BRCA genes, it wasn't that I was overweight or drinking excessive amounts of alcohol, which I have read, put you at higher risk.  I don't think I will ever know why...but, I do know that I survived and I am still here and I still consider myself healthy.  Sometimes, bad things happen and it isn't your fault.  When I get that comment about my health, I take it as a compliment, but it does imply that I must have done something wrong or why else would I have cancer?  I am here to tell you, you can be healthy and have cancer.  It sucks, but as my Dad used to say "Life isn't fair, get used to it." 

I am going to continue to be grateful for every additional moment I have in this life and I am going to continue to believe that I am healthy.  When I get that comment the next time, I am going to do what I always do, smile and say "Thank you, I am so glad to be here!"

Letting Go...

So much of life is a lesson in letting go of someone or something and yet we continue to cling to them.  Unable or unwilling to let go of them.  During my breast cancer journey over the last year and a half, I found myself clinging to life, not yet ready to leave Wiley, Vance and my friends and family.  I am still holding onto this life with all that I've got.  Looking at the world around me and finding the joy and sadness in all of it's chaotic beauty.   

It is one year since my oncologist held the results of my tumor marker test in her hands and smiled while she read "No evidence of cancer," to us.  Since that revelation, I have engrossed myself in writing down my cancer journey while Wiley documented it in photographs.  The experience in all of it's horror and grace needed to come out.  Had to come out.  As I near the end of writing and the beginning of publishing and sharing my book, I find I have more to let go of.

My book, Bitter-Sweet, is an intimate photographic journey of my breasts and life through all of the stages of breast cancer.  Before and after photos do not tell the whole story.  The story is so much more than that.  I feel compelled to share what I have learned, the tips and tricks to get through each stage and the photos to take the mystery out of all of it.  I am starting the process of letting go of the idea that everyone will see my breasts before they were removed and know what they look like now, filled with silicone and branded with scars.

Writing has been a form of letting go of the fear and trauma that I experienced on this path.  I am forever grateful for the experience on one hand and want to scream "Fuck you cancer" on the other.  Letting go has become a daily mantra for me since I have realized that I want more experiences instead of more stuff.  Writing this book has been such a healing experience for me.

I only have the very last chapter to write and it will start at the end of August when my final breast tattoos begin.  Then I will have to let go of my very personal journey and put it out into the world where I hope that it will help demystify and educate others about breast cancer.

What's a Tumor Marker?

I had heard the term tumor marker before being diagnosed with breast cancer, but didn't really know what it was.  It wasn't until I had completed my breast cancer treatment that my oncologist started using a tumor marker to track my cancer.

What is a tumor marker?  According to Wikipedia, "a tumor marker is a biomarker that is found in blood, urine or body tissues that can be elevated by the presence of one or more types of cancer. There are many different tumor markers, each indicative of a particular disease process, and they are used in oncology to help detect the presence of cancer."

Tumor markers are used in conjunction with other tests, like scans and biopsies, to help diagnose a patient with cancer.  Not all tumor markers are elevated when cancer is present, so oncologists use other screening and diagnosis methods along with tumor markers to confirm cancer.  There are literally hundreds of different tumor markers for specific cancers and many cancers that have yet to be designated a tumor marker.

My type of breast cancer, infiltrated ductal adenocarcinoma, produces a protein that can be detected with the tumor marker CA 15-3.  A blood test is all that is needed to look for that specific protein. Like many tumor markers, there are acceptable levels of the protein and levels that are cause for concern.  With CA 15-3, any score under 32 is considered "No evidence of cancer" and nothing to worry about.  If the level goes above 32, the cancer is probably still active and further treatment necessary.

When I had my first tumor marker test several months after chemotherapy had ended in July 2016, my number was 16.  That is half the acceptable level, so "No evidence of cancer."  That was a huge relief!  Three months later, that number dropped again to 14.  Three months after that it dropped again to 12.  The last tumor marker test in April, 2017 was 14.  We will check it again in August.

Since my tumor markers were staying low, my oncologist chose to have me come every 4 months instead of every 3 months to check my tumor marker.  The number will never drop to 0, but as long as it stays at an acceptable level, no cause for worry.  I won't be given a "cancer free" designation until my tumor marker has stayed acceptable for five years, that means under 32 for five years.

I hold my breath for about a week after I have my blood test and meet with my oncologist for the results.  So far, so good.  I am grateful that my type of breast cancer has a tumor marker that we can use to our advantage.  If at some point my tumor marker becomes elevated, we can decide what to do from there, but I am staying positive that my tumor marker will continue to stay low.