Reflections on October

I have written three posts in the month of October and left them all as incomplete drafts. ¬†Mainly because I have had so much “life” going on and secondly because I couldn’t quite put a finger on what I wanted to say.

First off, I am feeling great.  I have been enjoying the changing fall colors on my trail runs, enjoying my continued quest to live as clean and healthy as possible, spending full days at the Hope Scarves office laughing and planning with our amazing staff and volunteers, watching the boys play soccer, a trip to Michigan to visit family & date nights with Jay.   I took a trip to the beach with friends where I paddle boarded and sailed in the Atlantic Ocean.  I even got flagged in by the lifeguard because a shark was following me! Talk about feeling alive!

I am learning to accept sadness and fear along with happiness.   Allowing myself to laugh and joke around while also giving myself permission to be scared and sad.  It is a roller coaster.  It is hard, but we are doing it.   I have monthly injections of xgeva to strengthen my bones and take a daily medication called an Aromatase Inhibitor.  Both have some side effects along with the lack of estrogen in my body since removing my ovaries (medically induced menopause).  But, all are completely manageable and I am so thankful they appear to be keeping the cancer from growing at this point.   I will have a PET scan in December (every 3 months) to continue to closely monitor the situation.  I feel very blessed that my body is responding to treatment and that I have more time to live my amazing life and not be dominated by cancer.

54539bba8b5cd3dc0fd251eeAnd, so as¬†life as a stage 4 metastatic patient becomes the “new normal” I reflect on October. A month set aside for Breast Cancer Awareness – a month that one would think that I – one of the 150,000 women with the most aggressive and deadly form of the disease would feel rallied behind and comforted. ¬†However, this month has been incredibly hard. ¬†Mainly because the mainstream perception and take on breast cancer is fight it, beat it, be celebrated as a survivor and move on! ¬† Rallies around the country give the impression that we are winning this “war” that we are beating breast cancer and there is so much to celebrate in pink boas, tiaras &¬†tutus. ¬†However, the death rate from breast cancer hasn’t changed significantly in 30 years. ¬†40,000 women will die this year from breast cancer. ¬†It is the leading cause of death for women 35-45. ¬† I was one of those happy survivors – wrapped up in my survivorship, celebrating my victory. ¬†I wouldn’t change that for a moment. ¬†I don’t want to take away from the celebrations of those who are living cancer free after facing cancer. ¬†It is worth celebrating!!! ¬†I just wish there was more awareness that 20-30% of all women diagnosed become stage 4. ¬†Once this happens you are in treatment for the rest of your life. ¬†The average life expectancy is 2-3 years. ¬†These are the facts. ¬† These women and men!¬†(myself included) need to be part of the breast cancer story. ¬†And, more money needs to be directed toward research to help truly save lives by extending the lives of those living with the ONLY form of breast cancer that is deadly – stage 4, metastatic breast cancer.¬† I think there were some significant steps taken this month to broaden the story of breast cancer. ¬†I worked with our Komen Foundation in Louisville to host their first event focused on metastatic breast cancer survivors specifically and raise several hundred dollars for metastatic research. Hope Scarves is creating a research fund where we will direct a portion of the money we raise to research. ¬†It is a very small step in the right direction and I hope Komen and other breast cancer organizations will recognize that the breast cancer experience is very different for those who are stage 4. ¬† ¬†My hope is with research we can turn this fatal form of breast cancer into a chronic disease you can manage and live with. ¬†Time is ticking for me, but I am committed to doing all I can to raise awareness about the unique needs and experience of stage 4 patients¬†and raise funds for research to help me and those who come after me feel comforted and advocated for when their breast cancer spreads beyond the breast. ¬†Two places you can direct donations with a focus on metastatic breast cancer are www.metavivor.org¬†and a new organization I am helping to found called¬†www.twistedpink.org

So, as we get our Halloween costumes ready today (Wills is Jake from State Farm and Bennett, an injured soccer player- complete with a real cast on his arm) I am glad to wrap up breast cancer awareness month.  I am excited to focus on being a mom, wife, daughter, friend, sister first and breast cancer advocate/patient second.   I believe in finding meaning in every step of life.  The meaning in this new diagnosis for me is to cherish life more fully, to be present in the little moments of life and to help bring a voice to stage 4 breast cancer.  I hope I can do this in big and small ways for a long (deep breath) time!

Thank you as always for your interest in our journey and your support along the way.  One day at a time with love, laughter and adventure.

Time to change the laundry!!
Lara
#livingwellwithmetastaticbreastcancer
#stage4needsmore

National Metastatic Breast Cancer day

I felt like I couldn’t let today go by without writing about living with metastatic breast cancer – doing my part to continue to help people be “aware” of this untold often overlooked part of breast cancer.

Metastatic breast cancer is often left out of the conversation about breast cancer because it isn’t pretty, sparkly or pink. ¬† No one (including myself) wants to shed light on the fact that breast cancer can come back – regardless of original early stage diagnosis and the best treatments (both of which i had). ¬†When it does there is no cure. ¬†There are treatment options, but those who have metastatic breast cancer will die of this disease. ¬†Maybe in a matter of months, maybe in years. ¬†But, right now there is no way to stop it. ¬†There are no “end of treatment celebrations” and no matter how much we brave patients¬†“fight it” ¬†we can’t stop it from taking the lives of mothers, sisters, daughters and friends.

I have metastatic breast cancer. ¬†Yet, I don’t look sick at all. ¬†I am more “sick” than an early stage breast cancer patient who is bald, tired and sick from chemotherapy. ¬†Yet, I don’t look at all like a cancer patient. ¬†At least right now. ¬†But, we don’t know when the cancer cells in my body will outsmart the current drug I am on and I develop another painful bone lesion, the cancer spreads to another vital organ or stops responding to treatment.

Today, on National Metastatic Breast Cancer Awareness Day I am doing my part to raise awareness for people like me. ¬†It is unfair, frustrating, depressing and awful. ¬†Yet, we get up each morning – hug our kids, walk our dogs in the rain, look for lost shoes and “do” life. Every normal moment holds the joys of “living” but also¬†the tainted, twisted film of having a terminal illness. ¬† This weekend we were at a soccer tournament for our son Wills. ¬†I love watching him play because when I am cheering him and his teamates on I don’t think about cancer. ¬†I am so nervous watching him in the goal that I don’t think about anything else. ¬†But, then a parent slaps my husband on the back after a successful game and jokingly says “Keep that kid in the goal. ¬†I see a soccer scholarship in his future… ” How will be navigate¬†college without me? ¬†When will the day come when he doesn’t hear me cheering “lets go wills”¬†from the sideline. ¬† Tears. ¬†hold back the tears. ¬†reality. ¬†metastatic breast cancer. ¬†get to a private place to cry. don’t let them see me cry.

Face of Hope, October 2014 – Maggie (Ellicott City, MD)

1. How did you become connected with Hope Scarves?

Lara contacted me through Facebook and offered to send me a scarf.

2. If you received a scarf and story please share how this impacted your healing journey?

Receiving my hope scarf was a wonderfully warm experience. It was very thoughtful of Hope Scarves to select a breast cancer survivor who was in her twenties like me. The story behind the scarf was very inspirational and reminded me that I am not alone in this journey. It has given me strength and hope which is what everyone in treatment needs.

3. What are the things that provided/provide hope and strength to you throughout your battle?

Staying focused on a positive outcome
Family and Friends
Prayers and messages of support and encouragement on my Facebook page

4. Where are you currently on your cancer journey? Tell us how you are living life over cancer.

I have completed half of my chemo treatments; three treatments remain. I expect to complete chemo by mid-October. Surgery will follow.

5. What do you wish other people knew about Hope Scarves?

It is a terrific organization that connects cancer survivors with current cancer patients in a very positive way. Too often newly diagnosed cancer patients get negative messages about their prognosis and give up hope. It is very uplifting to connect with a cancer survivor and to receive a scarf worn by that person. The Hope Scarf is one of my favorites and I am honored to wear it. It helps me channel positive healing energy whenever I have it on.

6. What would you tell someone who is thinking about sending a Hope Scarf to a friend battling cancer?

During the months of treatment, there is very little to look forward to. Getting a surprise package in the mail really helps to lift the spirits, particularly when it is something as meaningful as a scarf that a cancer survivor wore during treatment. Along with the scarf was a personal note of encouragement from the former owner of the scarf which was a very nice touch that connects you to that survivor.

7. What is one of your dreams or goals for the future?

Beat cancer
Get back to dancing full time and move back to NYC
Grow Bald Ballerina into a non-profit foundation that provides grants for medical and living expenses for dancers with cancer

8. What is your favorite inspirational quote or words to live by?

I have two sayings:
1. The way I see it, if you want the rainbow, you gotta put up with the rain! ‚ÄďDolly Parton
2. For visualizing my cancer cells leaving my body: Another One Bites the Dust- Queen Song

9. If your friends or family had to describe you in two words, what would those be?

Kind and Determined

10. Please share something you learned having gone through cancer ‚Äď either as a survivor or as having a loved one with cancer.

Never give up. There are always cancer patients who defy medical statistics and live much longer than expectations.

Photo By Luis Ponsbald ballerina_scarf