Creative Art Workshop For YAs Facing Metastatic Breast Cancer

Do you like to make things? Are you a young adult cancer patient or survivor facing metastatic breast cancer?

Join Lacuna Loft for our next Creative Art Workshop making Zentangle Coasters and #LetsMakeStuff together! Create some meditative Zentangles on ceramic coasters all while hanging out with other young adult cancer patients and survivors facing metastatic breast cancer. We’ll send you what you need and you join from home!

Unlike most of our creative art workshop experiences, this specific workshop is ONLY for young adult cancer patients and survivors facing metastatic breast cancer.  (If you are a young adult cancer patient or survivor facing a different diagnosis, we invite you to wait for the next workshop experience).

Who: 25 young adult cancer patients and survivors **facing metastatic breast cancer**

When: Tuesday, October 13th @ 2-4 pm PT / 4-6 pm CT / 5-7 pm ET* via video chat. (*US time zones…please double check when to participate where you live!)

How does it work? We’ll send you all of the materials you need to participate! Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Supported by a grant from Seattle Genetics.

 

Click here to sign up to be notified when this program is announced by choosing it under ‘Programs you’re interested in.’ (Feel free to choose to be notified when other programs are announced too!)

Creative Art Workshop For YAs Facing Metastatic Breast Cancer

Do you like to make things? Are you a young adult cancer patient or survivor facing metastatic breast cancer?

Join Lacuna Loft for our next Creative Art Workshop making Felt Rosette Wreaths and #LetsMakeStuff together!  Craft and meet others while creating a pretty wreath made out of felt roses all while hanging out with other young adult cancer patients, survivors, and caregivers. We’ll send you what you need and you join from home!

Unlike most of our creative art workshop experiences, this specific workshop is ONLY for young adult cancer patients and survivors facing metastatic breast cancer.  (If you are a young adult cancer patient or survivor facing a different diagnosis, we invite you to wait for the next workshop experience).

Who: 25 young adult cancer patients and survivors **facing metastatic breast cancer**

When: Friday, August 21st @ 2-4 pm PT / 4-6 pm CT / 5-7 pm ET* via video chat. (*US time zones…please double check when to participate where you live!)

How does it work? We’ll send you all of the materials you need to participate! Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Supported by a grant from Seattle Genetics.

Free Online Movie Screening of “Ginger” June 19 to 26

ginger movie poster

You’re invited to a free screening of Ginger, right from the comfort of your own home!

Your free ticket provides exclusive online access to streaming the film for free between June 19th and 26th.

GET YOUR TICKET HERE NOW!

About the Film:
Ginger Mathis is a recent college grad with a passion for life but an aversion to reality. Working a less-than-ideal job and dating a not-so-great guy, Ginger isn’t sure what direction her life is headed in. When she’s suddenly diagnosed with breast cancer, Ginger struggles to balance her illness, her treatment, and all the complicated components of her totally unsettled life.
Ginger was inspired by co-director Melissa Boratyn’s ongoing battle with breast cancer. Learn more about Ginger at GingerTheMovie.com and go here to watch the trailer.

About the Event:
This free community screening of Ginger is offered to help raise awareness about breast cancer in young adults, especially metastatic breast cancer, and the need for more support and research.

Presented by:
ABCD After Breast Cancer Diagnosis
Gilda’s Club Madison
Milwaukee Film

Workshop For YA Cancer Patients/Survivors Facing Metastatic Breast Cancer

watercolor paints

Do you like to paint? Do you like to send cards?  Are you a young adult cancer patient or survivor facing metastatic breast cancer?

Join Lacuna Loft for our next Creative Art Workshop: Watercolor Notecards and #LetsMakeStuff together! This workshop is designed to teach you the basics of watercolor.  If you’ve never done this before, you’re in luck!  Aerial will go step-by-step through everything!  If you love watercolor and you’re a real pro already, no problem!  During the workshop, Aerial will offer a poem and will invite you to create watercolor notecards in response.  No experience necessary to be creative and chat while working on one of a kind stationery!

Unlike previous creative art workshop experiences, this specific workshop is ONLY for young adult cancer patients and survivors facing metastatic breast cancer.  (If you are a young adult cancer patient or survivor facing a different diagnosis, we invite you to wait for the next workshop experience).

Who: 25 young adult cancer patients and survivors *facing metastatic breast cancer*

When: Sunday, October 13th @ 11am-1pm PT / 1-3 pm CT / 2-4 pm ET via video chat.

How does it work? We’ll send you all of the materials you need to participate! Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Supported by a grant from Seattle Genetics.

Click here to sign up to be notified when this program is announced by choosing it under ‘Programs you’re interested in.’ (Feel free to choose to be notified when other programs are announced too!)

Support The Metastatic Breast Cancer Access To Care Act

capitol hill

Our friends over at the Young Survival Coalition have just shared this great, legislative advocacy opportunity with us and we couldn’t wait to share it with you!

From now through September 9, you have an important opportunity to make your voice count!   The Metastatic Breast Cancer Access to Care Act is an important legislative priority of the National Breast Cancer Coalition that concerns Medicare and Social Security eligibility for metastatic breast cancer patients.

If passed, HR 2178/S 1374 would waive the 24-month waiting period for Medicare eligibility and the 5-month waiting period for Social Security Disability Insurance benefits.

During August, Congress is on a break, so it’s a great time to reach out.  You are your own best advocate, and this is an important opportunity to make a difference!

Take action today!

Finding Love in the Face of Cancer

love after having young adult cancer

Lara is a delightful young woman who has shared some of her stories with us on the Young Adult Voices blog.  Recently she wrote a fabulous article about her journey finding love after having young adult cancer.

“The day after I was diagnosed with breast cancer, I remember sitting in my room and sobbing.

I was sobbing for the love that I had never experienced.

The partner I would never meet.

Love so deep and beautiful.

The kind you see in movies and dream of.

I will never find that because I will most probably be dead in a year.”

She goes on to describe a beautiful love story that is authentic and real and raw.

You can read the rest of the article here.

Breast Reconstruction And Fat Grafting

breast reconstruction and fat grafting

After polling on Instagram this week I discovered that almost 95% of you want more surgery/reconstruction content. So, since I have been putting this post off for about 4 months, I figured it is time to bite the bullet and share my most recent surgery recap and insight with you all. When I think about why I have been putting it off, I think it’s because I kept waiting for perfection, and complete satisfaction. After 5+ surgeries I can now say I have accepted the fact that perfection and complete satisfaction are unattainable. My reconstructed body will never be perfect and it will never be what it was before cancer. I have finally come to accept that, that is perfectly OK.

breast reconstruction and fat grafting

If you haven’t been following me since the beginning you can read my previous surgery and reconstruction posts to catch up:

[list type=”like”]
[list_item]My Boob is Trying to Kill Me [/list_item]
[list_item]My Boob is Trying to Kill Me Part II: Mastectomy and Tissue Expanders [/list_item]
[list_item]How to Prepare for a Mastectomy[/list_item]
[list_item]My Free Boob Job: Myth or Reality? (Expanders)[/list_item]
[list_item]Let’s Talk Nipples[/list_item]
[list_item]The Reconstruction Saga Continues (Implant Exchange Results)[/list_item]

breast reconstruction and fat grafting

Before cancer, my breasts were one of my favorite parts of my body. Sure they were huge (36DD) and quite saggy for age 27 (thanks to gravity and aging), but I loved them. They were a part of me and made me sexy and womanly. Going through chemotherapy and a double mastectomy, I felt my femininity was stripped from me. I couldn’t wait for the reconstruction stage, so that I could begin to feel whole again. I saw reconstruction as the answer to my insecurities and sadness about my newly changed body.

breast reconstruction and fat grafting

Just like with many things in life though, the things we see as the solution for our unhappiness never work out as planned. Each surgery left me with new disappointments, added recovery time and new complications to face. Beginning the road to reconstruction was a step in the right direction for me, but being such a long process I had to find other ways to reach acceptance and reclaim my body. Ultimately it was blogging, reflection, and lots of self-love practice that helped me love my body again. It definitely didn’t happen overnight. It took a year and a half of ups and downs, sadness, reflection and lots of work to get to where I am now. And to be honest I still have a lot of work to do – thus my self-love goals for this year.

breast reconstruction and fat grafting

All in all, my reconstruction has lasted 2 years. When the plastic surgeon first told me it could take up to 2 years for the reconstruction process, I didn’t really understand the weight of her remarks. I thought after the first surgery I would be satisfied and it wouldn’t matter that there would be “touch up surgeries” down the line. Now after 5+ surgeries including 3 specifically for reconstruction, I have new perspective and insight on the process. There are a few important lessons I have learned and I am sharing them with you now.

Be your own advocate – Do your research before reconstruction. Look into a variety of approaches (expanders, immediate reconstruction). Research implant types, sizes, materials, surgery specifics like under the muscle or over the muscle. The more you know, the more questions you can ask and the more satisfied you will be with the results of your surgery. Make sure you are the driving force in the decision making.

Be patient – This is the hardest part. Expanders take time, recovery takes time and waiting in between surgeries takes time. Immediately after each surgery, my world revolved around my recovery, my feelings about my results and ultimately my disappointment. The more I learned to be patient and let me body heal, the less I stressed about the results. In time, I was able to reach a healthy level of acceptance.

Take progress photos – Just like with weight loss, it’s hard to see growth when you are looking at yourself everyday. I am so glad that I started taking progress photos at the very beginning of my cancer journey. Those photos help me see how far I have come and how strong I am. They help me celebrate my strength, my beauty and my growth both physically and emotionally.

Live your life – Sitting around waiting for your reconstruction to be perfect can keep you from living your life. When I finally let go of obsessing over my reconstruction I found I had much more time, energy and interest in living life, trying new things and connecting with others. Our disappointment and self-doubt can hold us back from greatness

OK so now that I have I overloaded you with my insight and emotional reflection, let’s get back to my latest surgery. In late August I had reconstructive revisions and fat grafting surgery. The revisions were to remove extra skin and tissue that made my foobs (fake boobs) look disproportionate. The fat grafting was also done to improve the natural appearance of the foobs by adding fat taken from my stomach and hips to my chest. The goal was a more rounded, natural shape. For reference my implants are under the muscle Natrelle Inspira Overfilled Round in 750CC (Silicone).

breast reconstruction and fat grafting
breast reconstruction and fat grafting

I knew from the beginning I wanted to get fat grafting because I mean free liposuction, why not haha? I also knew from my research that fat grafting on smaller framed women is the only way to create a more natural appearance after reconstruction. What I was not prepared for was how painful the liposuction was. I woke up from surgery in horrific pain and my abdomen and hips were painful to the touch, tender and sore for over 30 days. I had to wear compression garments (this girdle) 24 hours a day for 4 weeks!!! I also had the typical 5lb weight limit for 4 weeks and dealt with heat rashes (yay sensitive skin), itching, and the delightful post-surgery care. In terms of functioning, I was able to move around a day after surgery and started a new job 7 days later.breast reconstruction and fat grafting

So you may be thinking… was it worth it? My honest answer is, I am not sure. I am now 4 months out and while the appearance of my foobs is improved, not all of the fat took. The average survival rate for fat grafting is about 60%. Did you know that you are born with a set number of fat cells and that number never changes? The reason you may gain or lose weight is because those cells grow or shrink. When moving fat around in fat grafting surgery, they go in with a scraping tool (yes that’s why it’s painful) and remove cells from areas where you have a large concentration. They then run those fat cells through a processing machine to “purify” them and then they inject those fat cells to the new location. The injected fat cells need enough oxygen and blood flow to survive in the new area. If they inject too many new cells at once the fat cells will die. It takes time to determine what amount of the injected fat cells survived. This process can take up to 3 months. After the 3 months, many plastic surgeons will then suggest another round of the fat grafting. On average most patients go through 3 cycles of fat grafting to achieve the desired results.

breast reconstruction and fat grafting

At this point though, I will not be going through another round of fat grafting. In terms of the appearance, I know another round would help and I would be more satisfied, but it’s just not a priority for me right now. Right now we are focused on pregnancy and a family after cancer. My reconstructed foobs will never be my pre-cancerous boobs and that’s OK.

breast reconstruction and fat grafting

My plastic surgeon and I will revisit the topic after children and may at that time, assuming my body has changed even more, I may go through additional fat grafting sessions. Maybe in the future, it will become a priority again, but for now, I am sticking with this body I have and I am celebrating my foobs. Sure there are imperfections but they are all part of my story. I choose to celebrate instead my strength, my determination and my amazing body that has gotten me through so much.

breast reconstruction and fat grafting

Wherever you are in the reconstruction process, I hope you find peace and love for your body. I now know that no surgery will solve my insecurities, that was something I had to resolve from within. I had to find love for myself and then the body acceptance followed. You are beautiful inside and out and your foobs do not define you! Rock on my beautiful survivors.

Originally published on mycancerchic.com.

A Routine Follow-Up

routine follow up in young adult cancer care

You terrify me, she says, tucking an otoscope into my ear canal so that she can see the pink of my healthy drum and it’s vesseled lining. The last time I saw her I had a lump in my boob that turned out to be cancer, and today I am back for a routine follow-up after months of treatments.

She sucks in her breath, disapproving, when she learns that I never went to the dermatologist for the skin assessment she’d recommended. I was a little busy, I say, having cancer. She seems to shrug a little, deflecting my sarcasm, and moves on to wondering whether or not I’ve made a decision regarding nipple reconstruction. I haven’t.

She tells me there will be no Pap smear today; she’ll leave that to a gynecologist. This is probably due to the fact that I am a terrifying cancer bomb, ready to explode malignant cells all over the plastic exam table if poked in the wrong spot. But since we are on the topic of lady parts, I bring up my oncologist’s recommendation to shut down my ovaries. I say that I am dragging my feet because I am just not ready to feel like I’m 50, with hot flashes and joint pain and weight gain and a menopause mustache. Not to mention the increased risk of cardiovascular disease and bone health issues. My mom had a heart attack, and I don’t drink milk, so these are Very Real Concerns. Doesn’t she know that I have fifty more good years left in me at least, and I’d like some of them to be with estrogen?

I lie back and I tell her all of this as she palpates my abdomen. She presses her fingers down and in, alternating pressure to her palms, like a cat kneading its nest, back and forth and back again. We can do something about those things, she insists, unconvincing. But I know what she is trying to say. She means that if the cancer comes back, it will be in bone or brain or lung or liver. If it comes back, the fifty years I see before me will be fiction. There will be nothing we can do.

I know.
I know this.

And then she says, this is a really big deal. As if I don’t understand that cancer is a really big deal. As if all that I’ve gone through up to this point, it needs to be emphasized, was a really big deal. As if I had forgotten.

You terrify me, she says again, snapping off her gloves into the trash. I watch as she sits at the computer, her fingertips pelting the keyboard with the force of a hailstorm, ordering up a platter of consults to more specialists that I can wait for and undress for and be palpated by; people who will probably also feel the need to inform me that I’m terrifying. I wonder if this word has made it into my medical chart – a warning for anyone called upon to help me make it through this alive. I wonder if Terrifying is a drop-down option for the Problem List, today’s Visiting Diagnosis, a box to check as part of the billing process they send to my insurance, requesting reimbursement.

I wonder if I am destined to carry the weight of this word with me for all the days I have left – an unfortunate ailment for which there is no cure.

Awkward Auntie Question No. 4

libido after cancer

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Q: I am a woman. I used to have a very satisfying sex life and high libido. Because of breast cancer I had to have a double mastectomy (no more nipples and no sensation). Then chemo put me in menopause. I am not allowed to take replacement hormones as my cancer was estrogen positive. I feel like I have been “castrated” – doctors don’t tell you your clitoris will shrink, your vaginal canal will shrink and become rigid. I have zero interest in sex (pain plus no libido, plus the several times I have been able to have some kind of an orgasm it has been so weak I barely noticed it), I am single and still young. What can I do? Is there a way to rehab the body?

Awkward Auntie: This is a long and complex answer because this is a complex situation. Chemotherapy causes menopause in women and it is usually way worse than ‘normal’ menopause. Many oncologists will prescribe local estrogen for women like you as the systemic exposure is minimal. This is the only thing that will really help with the dryness and shrinkage that you describe. I believe that it is a woman’s choice whether she wants to use this or not and not the decision of the oncologist to refuse to talk about it. You can try using vitamin E oil on the vulva for daily comfort and you must use a good water or silicone based lube for any kind of penetration. Find one that has the least amount of ingredients – silicone lubes often have just one or two ingredients. Using an external vibrator to ramp up your arousal response and use it often. This takes time and patience… but your body can relearn to feel pleasure and that will increase your libido. But the reality is that things are not going to be as good as they were before because so much has changed. There is no magic recipe or rehab – but time and exploration can open new avenues for sexual pleasure.  The following is a good resource too!

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Flashback #24: Boobs To Noobs

breast reconstruction

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #24: Boobs To Noobs was written by Mahalia. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….Getting breasts is one of the hallmarks of becoming a woman, but for most of our lives, they’re merely decorative. In the case of men, I believe their’s are God’s way of reminding them their embryos started out as female, to help connect them with the female experience, or maybe they’re just a Darwinian fluke. For whatever reason, everyone has them…

……

Read the rest of the article here!