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

It’s A Troubling World

woman in front of brick wall

This world is troubling on so many levels. I can typically handle one thing at a time but not a total shitstorm within two days. I will go ahead and warn this piece will talk about race in relation to cancer.

Believe it or not, race plays a part in the cancer experience. I’ve dealt with many nurses, staff at cancer support communities and fellow warriors in online support groups who automatically assume since I’m black that I must have triple negative breast cancer. They have sometimes talked down to me.

No, this is not my imagination. This is not me being overly sensitive.

I blogged about this particular incident when I first started my blog in November 2017. It’s worth repeating. Some will innately get the insult and frustration. Others will not see why it was a big deal. All I can do is speak my truth.

It was almost a month after I started chemo in October 2015. I decided I needed help processing what was happening. I’ve always been a big supporter of therapy and support groups. I’m a talker and like to talk things out. At that time, I didn’t know any other 39-year old’s going through this. I needed support.

I went to the Cancer Support Community in Atlanta, GA. In order to join a group, there is an intake session with one of the staff members. I had spoken with her on the phone and was really looking forward to meeting her. I was already fatigued, nauseous and had worked a full day by the time I arrived. I was expecting to feel relaxed and heard.

The woman, who was white, gave me paperwork to fill out. Once done, I handed it to her, and she reviewed. This is where my frustration begins.

She asked, “Are you sure you’re not triple negative?” I was puzzled by the question. I knew what my diagnosis was, and it was stage IIA invasive lobular breast cancer. Maybe she couldn’t read my writing, even though my writing is very neat and specific.

She asked again, “I just want to double check. Are you sure you’re not triple negative?”

This time I was annoyed and responded back sharply, “No, I wrote my diagnosis. Why are you questioning my answer?”

She said, “Well, most African American women who get breast cancer are triple negative. It’s very prevalent in your ethnic group.”

Now, her questions would’ve have been appropriate if I didn’t know my diagnosis or specifically asked about what type (s) of cancers are prevalent in the black community.

Only, I specifically wrote my diagnosis and verbally told her what I had, yet she still questioned me like I didn’t have a clue of what I was talking about.

It was that moment I realized she didn’t see me as a cancer patient. She saw me as a BLACK cancer patient. Understand the distinction?

Every question from that point was about race. I was there to talk about cancer and not the black experience. I left shortly after that exchange.

Cancer does not discriminate, so why was she?

Let’s fast forward to today.

Many cancer patients, whether in active or post treatment, spend much of their time going to the pharmacy to pick up medication. This pharmacy doesn’t have a drive thru. I was at Target. I needed to pick up my refill of the arthritis medicine. Yes, I have arthritis in my knees and hands. That’s a story for another day.

Though I was only there to pick up my medication, I got a cart to lean on since my fibromyalgia pain is a 12 today. There was a line and no place to sit down.

There was a white mother and her young son in front of me acting up.

She said, “See this BLACK woman? If you don’t hush, she’s going to hit you with her cart.” The kid starts crying. I’m speechless. I saw first-hand how racism is taught.

Now that little boy will associate black/brown women as harmful, cruel and punishing.

I was paralyzed and slowly backed away and went to another part of the store for a bit before circling back to get my meds. Keep in mind, there was a white woman behind me who witnessed this whole thing. She was conveniently looking down at her cart, not wanting to get involved.

I’ve experienced lots of racism but never in front of an impressionable child where a mother is saying because of my skin color that I would hurt her child.

I’ve even had the same thing said to me at a different pharmacy but that white woman said, “See THIS woman? If you don’t be quiet, she’s going to hit you with her cart.” That happened earlier this year.

What is it about threatening kids with carts?

I did say something in that instance, and she did a double take when I said it was not okay to say that.

This time was different because this white woman specifically mentioned my skin color. That’s why I felt paralyzed.

I posted this incident on my social media this afternoon. I received many comments of my friends, many white, saying they would’ve stuck up for me and said something to that racist woman. If I were a white woman, I think I would’ve said something.

As a woman of color, I knew to keep my mouth shut and walk away. There is no reasoning with people who have that mindset of hate.

Until next time,

Warrior Megsie

Megan-Claire Chase is a three-year breast cancer survivor in Atlanta, GA. She is a marketing project manager by day. In her spare time, she writes a blog called Life On The Cancer Train at www.warriormegsie.com and is a published cancer blogger for Lacuna Loft, IHadCancer.com, CancerBro, Humor Beats Cancer, GRYT Health, WILDFIRE Magazine and Rethink Breast Cancer just to name a few. One of her biggest achievements in 2019 was co-presenting an abstract on AYA perspectives on fertility preservation conversations with healthcare providers at the American Psychosocial Oncology Society (APOS) conference in Atlanta. She also has cat named Nathan Edgar who is her pride and joy.

This piece was first published at WarriorMegsie.com.

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. 5

libido after young adult 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 have zero sex drive. None. My only desire to do it is so that my poor long-suffering partner isn’t doomed to a sex-free existence. How do I build this into my routine again? For a long time the act itself was very painful, now its less so but I just feel uncomfortable and unengaged.

Awkward Auntie: This is a common question; loss of desire (also called libido) is the most common complaint I hear in my therapy practice. Desire is a delicate thing and particularly in women, can be lost (and gained) with the slightest change in how we see ourselves, our relationship, if we’ve had a stressful day etc. It is VERY common for women who have gone through the kind of treatment you had to lose interest, and feel bad about it.

Our thinking about female desire has changed over the last 10 years or so. We used to assume that women, like men, should or do have feelings of desire all the time, what we call spontaneous desire…. but our more current thinking is that for many women, desire is REACTIVE, that is our desire kicks in once we become aroused (physically or mentally). So if you sit around waiting to feel spontaneous desire, you may be sitting around for a long time… So if your partner is understanding and patient, ‘fooling around’ with no end goal (sex) as the target may ignite your desire.

That said, you have been through a LOT – and the pain or discomfort you are left with will of course impact on your desire….the disengagement you describe may have something to do with the disengagement you had to take on to get through the treatments that are violating for many women. In order to be sexually responsive your head needs to be connected to your body and sensations – this is the OPPOSITE of what you needed to do when going through treatment! Using a good lube may help with some of the discomfort as radiation dries out the tissues and you may need some local estrogen as well.

Seeing a sexuality counselor who knows about cancer might be a good idea as well as seeing a GYN who knows about the treatment you have had.

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.

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.

Welcome Marloe!

young adult cancer survivor

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Marloe!

Marloe is an RN and oncology certified nurse working as a Breast Care Nurse Navigator in Milwaukee, WI. She graduated from UW-Madison School of Nursing (go Badgers!) in 2008, and has worked with the oncology population in some form or another since. In 2014, her personal and professional lives collided in the most unexpected of ways when she was diagnosed with invasive breast cancer at the age of 29.

Despite her professional experience in oncology, Marloe found herself unprepared for the emotional impact of her diagnosis, and she turned to writing as a way to cope with the upheaval and uncertainty that cancer had brought into her life. Upon her return to work, she implemented an expressive writing workshop in an effort to share with others the value of writing their way through cancer. Currently, she facilitates the Healing Words support program for cancer survivors, offered monthly through her clinic’s wellness center.

As an advocate for sexual health and wellness, Marloe has had the opportunity to spend time in her community educating both cancer survivors and healthcare professionals on the topic of cancer and sexuality, including presenting for the Young Survival Coalition, the Oncology Nursing Society Wisconsin Capitol Chapter, and Planned Parenthood of WI. She is currently enrolled in the University of Michigan Sexual Health Certificate Program, and hopes that her efforts will help bring to light this often unaddressed but very real long-term survivorship issue.

Marloe lives in the Bay View neighborhood of Milwaukee with her husband and their cat, Princess Leia, in a fixer-upper that has “a lot of potential.” When she’s not at work or supervising her husband’s house projects, you’re likely to find her reading, writing, running, or enjoying a cold beverage and contemplating life. She’s also fairly competent at crochet, which comes in handy during the cold, dark Wisconsin winters. She is excited to join the voices of Lacuna Loft as a way to connect, inspire, and affirm the experiences of her fellow young adult survivors.