New Opportunities to Meet Others Facing Metastatic Cancer

woman sitting on bed

Our program calendar is chock-full of great things to fill the rest of this crazy year and we’ve got three metastatic only programs left in 2020! In chronological order below, you can get all the details on when and how to sign up!  Spoiler alert:  We have a focus group, a one-night creative writing workshop, and an entire track of Gabfest specifically geared towards young adults facing metastatic cancer.

— Lacuna Loft is a proud partner of the Coleman Supportive Oncology Collaborative for Adolescents and Young Adults (CSOC AYA), a collaborative of clinicians and patient advocates who treat and support AYAs with cancer. This collaborative recognizes that information and support resources for those living with metastatic or advanced diseases are lacking. This year, together, we set a goal to create a resource for young adults like you. We need you to tell us what should be in it. Be heard now and in the future by sharing your experience, thoughts & ideas as a contributor to this effort.  Please join us for an online discussion with members of the collaborative and other young adults like you on Thursday, November 19, at 5 pm PT / 7 pm CT / 8 pm ET via Zoom. You can go here to register in advance for this meeting and family members, caregivers, and friends are welcome to join, as well as, young adults facing any type of metastatic cancer aged 15-39.

— Then, back by popular demand, Lacuna Loft is facilitating a one-night creative writing workshop for those young adults facing metastatic breast cancer on November 23rd! (This is the only opportunity of the three that is specific to a certain diagnosis).  We’ll be writing with prompts in a group setting, with only metastatic breast cancer participants, supported by Seattle Genetics.  No expert writing experience needed here. Just grab your pen(cil), some paper, and our moderator will help guide you through thoughtful prompts that are set in a judgment-free, no-pressure environment.

— Also make sure to register for YA Cancer Gabfest, where you can attend a metastatic specific track (a whole day of the agenda is just for you!) and hear from others who are in your shoes.  Starting with an interactive chat with Dr. Mark Lewis, a panel of ya metastatic survivors, and a chill hangout to get to know one another afterward. It’s all happening the week of December 7th, with the metastatic day on December 10th!

Each program will offer the ability to meet others facing metastatic cancer, so sign up today for one or all of these opportunities!  Everything is online so you can be home, cozy and comfy, and connect with others who understand what it’s like to face metastatic cancer as a young adult.

Questions about any of these free programs? Contact aerial@lacunaloft.org!

Shining The Light On Metastatic Breast Cancer

metastatic breast cancer

Refinery 29 is shining the light on metastatic breast cancer.  Using wonderfully beautiful photographs of women facing metastatic breast cancer.

“…Refinery29, in partnership with #Cancerland, has been bringing you these women’s stories, in an effort to change the conversation about breast cancer. We’ve talked about how only about 2% of the money raised for breast cancer research goes toward metastatic disease, and we followed stage-IV activists to D.C. as they lobbied congress to change that. But as October comes to an end, we want to turn to the daily, lived experiences of these women: What is it really like to live with a disease that everyone seems to have heard of, but no one really understands?”

The pictures show the scars and the faces and the souls behind the women, bringing life and awareness to this terrible disease.  The women talk about quality of life and the continual grieving that happens when life and its goals are irrevocably changed.

Are you a metastatic young adult cancer survivor interested in sharing your story?  Email info@lacunaloft.org.

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A Friend Of Mine Is Dying

a friend of mine is dying

A friend of mine is dying.  I can’t remember if we’ve ever spoken on the phone.  I know, with certainty,  that we have never met in person.  Still, I will call her my friend.

I met her on this young adult cancer journey of mine, just as I was beginning to grapple with everything that cancer had taken in its tight little grasp.  We stayed in very loose contact, mostly over social media; liking photos and wishing birthday thanks as time went by.

Then her cancer came back and it came back with a vengeance.  She sought alternative treatments and then resorted to chemotherapy.  Before losing her beloved hair, she married her sweetheart.  Just the other day, she made it to her 6 month wedding anniversary.

She wasn’t supposed to live that long.

I think of her every day.  I think about what I could say to her that might help while still being fully aware that I don’t actually know her that well.  I have never met her, never really carried on a conversation with her that didn’t revolve around cancer, yet I feel so connected to her.  I think about what she must be thinking.  I wonder if she is mad or sad.  I want to ask her about death.  I want to tell her that she can confide in me, that she can have the hard conversations with me if she wants, while also knowing that it is probably not with me that she wants to go through those transition-like talks.

I know, deep inside, that I want to have these conversations for her, but also for me.  I want to hear what conclusions she has come to about death and dying, about heartache and loss, because the truths in her life right now frighten me.

I see in her what could so easily happen to me.

Interview With Cancer Survivor Wendy!

breast cancer

Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Lacuna Loft talks with cancer survivor, Wendy. She is a young metastatic breast cancer survivor who talks to us about her diagnosis, telling her son about cancer, living with terminal cancer, not being on a journey, and more!

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Lacuna Loft:  When were you diagnosed and what is your diagnosis?

Wendy:  I late March of 2004 I was putting away clean socks in a drawer and bumped up against something hard and painful in my right breast. My husband of then 11yrs had been dealing with symptoms of blood in his stools and was trying to get a colonoscopy approval at the age of 39. I had just been to my yearly gynecologist visit 5 weeks prior with everything perfectly fine. I then tried to feel what this was and it appeared to be a large golf ball sized mass. Immediate panic insued and I called my husband. I was 35 years old with a 5 yr old son. After testing and many biopsy procedures, I was diagnosed with Stage IIIB IDC Her+2 ER+ Pr+ breast cancer. Tumors of almost 9cm total were hammered with 8 rounds of chemo, a bilateral mastectomy with TRAM Flap reconstruction, 25 sessions of rads and 5 years of Tamoxifen. While that was going on my husband was diagnosed within days of my diagnosis with Stage III B colonoscopy cancer. He underwent surgery to remove 18″ of his intestine and rectum with 12 sessions of chemo post op.

Five years after my initial dx in late August 2010 I was throwing the football with our then 12 yr old son and had intense shoulder pain. After a visit to the Orthopedic Dr. he told me that I needed to see an Orthopedic Oncologist as I had what appeared to be cancer throughout my entire right humerus. After the bone biopsy I was then diagnosed with Stage IV Metastatic breast cancer and given a grim outlook that I would never be cured and die from this. I underwent 15 rad sessions and was “clean” until I reluctantly agreed to a PET scan in February 2014 which detailed progression to the lungs and chest lymphs. My outlook became even more grim with odds that I would only have 6 months of quality life left. Our son was 14. Chemo, immunotherapy, scans ensued when further progression was discovered to my axilla. Fast forward to June 2016 and I am STABLE! Our son has just graduated from HS and off to The University of Dayton in August to pursue a degree in mechanical engineering. My husband has been clean since 2004 and is now treated as a regular 50 yr old!

LL:  How did you feel when you were first diagnosed (physically, mentally, emotionally)?

W:  At the first diagnosis I felt sooo defeated. “I cannot go through chemo, lose my hair and throw up all the time! I am way too young to have breast cancer!!!” Then my husband’s diagnosis came just days later and all I could think of was we cannot let our son be an orphan.

LL:  How did you choose to share your diagnosis with your children?

W:  In the beginning we just told our son that we were sick. Dad would have a big boo boo and mom would be taking stuff that would make her bald. Then vice versa. He did not really know the impact of the disease until my Metastatic diagnosis and them it sunk into him. He does not remember much from the first time or his dad. The impact of the teenage years is immense. Eventually he would be diagnosed with an eating disorder at age 16 which was robbing him of puberty, thriving and life. I got him back on track and he sees me just pushing through and that has taught him that no matter what you accept and move on.

LL:  Any words of wisdom to other young adult cancer survivor moms/parents out there?

W:  Be mindful and present as this moment is all that ANYONE is given so make the most of it good or bad. Accept and move on…it is very important to accept any feeling but you cannot dwell on it.

LL:  Who/what/where did you turn to for support?

W:  I first turned to support through what I considered friends…unfortunately most of us have been torn apart by reality of the relationships we “have”. My parents were so negative, judgmental, and toxic I had to estrange myself eventually after I dug deep internally and pulled myself out of alcoholism to realize they were my triggers. My social worker was a great help (I never opened up to professional help before) as were my oncology nurses. New spirits showed up in my life as I became more mindful and I began advocacy work in both caregiving and patient peer to peer support. I am also a huge advocate for metastatic breast cancer spreading awareness, education and helping to raise research dollars that REALLY GO TO RESEARCH!

LL:  What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?

W:  Doctors and medical staff are very cryptic and vague in talking with metastatic patients. I wish they would engage more into the the entire patient not just medical findings (if they can’t cure it they do not know it entirely). They too could learn something. I have opened up my medical team to many areas to investigate that they may not have even considered. Listen to us…

LL:  Could you describe how your husband’s cancer affected your own cancer experience?

W:  You must accept the circumstances put forth and dig deep to find solutions that are fluid as life is full of challenges, surprises, and small victories. I experienced much judgement from those outside our relationship which was extremely hurtful but you must shut the noise out and focus on what it is important to you. Taking care of yourself first is most important, as if you are not ok you cannot help anyone else. The really surprising result of his bout with cancer was his reaction to me being terminal. Not at all what you would think in fact I am more alone than ever in our relationship and have created my own life and supportive relationships to help me pull through each moment. My mantra of 2015 has given me so much strength…”Expectations breed limitations.”

LL:  Who was your most supportive caregiver during your cancer experience?

W:  I have a small circle of trusted support each bringing different gifts of strength. All are new in my life and from many different aspects of my being. Be present always as bright stars fall from the sky and you may not even be aware of the treasurers that await you.

LL:  What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?

W:  During my first diagnosis work defined me so I continued to be functional (yes working remotely while the poison was going through my veins). Our son was another welcome distraction but my husband’s cancer was a very different distraction. My terminal diagnosis has brought fitness, nutrition, peer to peer support, and metastatic breast cancer awareness and education. I am much more mindful and truly try to be present as I have always been a person checking off lists and rushing through life. I am also on SSDI which has proven to be a great blessing.

LL:  Could you describe how sharing your story has affected your journey with Cancer?

W:  I call this my LIFE as I am not on a journey nor am I in a battle. Sharing has made me truly happy. This cancer was placed upon but I can use my experience to help others and hopefully help to move research in the direction of not putting us metastatic patients our to pasture to die. I enjoy showing people that cancer does not have to be an automatic death sentence even if you are diagnosed terminal as I am. I exude energy and life and encourage others to try and do the same.

LL:  Where are you now in your journey with Cancer?

W:  Currently I am stable with treatment every 3 weeks, scans 3-4 months while celebrating my 6th year living with stage IV metastatic breast cancer. Joyfully Celebrating a milestone I thought I would never see-my son graduated and off to college!

LL:  What do you like to do in your spare time?

W:  What spare time? I am busier now than I have EVER been! I enjoy taking some time for myself through exercise, turning inward and being present through many different and often new activities.

LL:  Could you talk a bit about your work advocating for metastatic Breast Cancer survivors?

W:  Advocacy brings me an abundance of fulfillment and joy, I have never thought or muttered the words “WHY ME?”. Why not me? If I have been challenged with this, let me turn this into something that gives back!!!

LL:  What “words of wisdom” and/or advice would you give any young adult facing Cancer?

W:  There is no “I can’t because…” Be present, mindful and most of all practice gratitude. There is always something to be grateful in the day and it is UNFAIR TO COMPARE!”

Thank you for sharing your story with us, Wendy!

Are you a young adult cancer survivor or caregiver?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!