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!

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.

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.

Radio Days And The Boob Bubble

young breast cancer radiation therapy

Outside. Directly opposite. Big Ben has chimed a big fat 9 am.

St Thomas’s radiotherapy unit. This is my home away from home for the next 23 consecutive days – excluding weekends – cancer doesn’t do weekends – thus resulting in my appointments being drawn out and clashing with my beloved Glastonbury Festival. Nooooooooo. To go during radiotherapy or not to go? That is the question.

I look around me at a sea of white hair. Bloody hell. Everyone’s so old. I don’t want to get that old. So old some of these patients look like they’ve been wheeled in from the set of Dr Who. Fossilised and mute. Why are you here?! What’s the point of prolonging your life?! What quality of life are you going to actually have? Yeh the heart’s still beating but everything else is buggered. I’d just like to reach 50 please universe. No more, no less if that’s not too much to ask. As I contemplate this, I notice an elderly patient smiles at me…. and doesn’t stop smiling at me.

Bridget is 80. She’s a sweetheart and there to have her pelvis done. She tells me her ENTIRE medical history, then lowers her voice to almost mouth the words…

“Once my radiotherapy finishes I have to stick several medical objects up my…….!!!!”

Get. Me. Out. Of. Here.

Her eyes light up, “I’ve never used a vibrator before.”

Silence.

Say something Lara!

“Well….. better late than never.”

Bridget gets called to her appointment.

Thank……………God.

It’s been two months since I finished chemo. Three weeks after chemo I had a re-excision – usually it’s meant to be 4 weeks but my surgeon fast tracked me so I had a chance of making it to Glasto. Priorities man. I love my surgeon. A re-excision is basically more surgery to remove a bit of skin in my boob that was touching the tumour. This is called the ‘margins.’ Imagine my tumour is a fried egg sunny side up. Which is appropriate really, seeing as my tits look like a couple of fried eggs. The tumour is the yellow yolk and the margins are the egg white. Everything has to be removed. The surgery is done using the naked eye. My dear surgeon thought he’d removed the whole fried egg in my first round of surgery (I had a lumpectomy.) But the pathologist (who’s job is to cut and examine the juicy lump of tumour tissue) found he’d only removed three quarters of the margins. So he went back in there and cut the last bit of the quarter out. The results came back clear. No traces of cancer. Boom.

Three weeks after the re-excision I go in for my radiotherapy pre-assessment. I lie on the measuring table. The nurses tattoo 3 tiny dots (the closest I’ll ever get to being cool.) One in the centre of my chest and the other two either side of my boobs. This is so the measurements are completely precise. Radiation is hardcore. It’s so strong that not only will it kill any cancer cells, it also kills the healthy cells and can potentially damage my ribcage and my lung as it zaps the shit out of where my tumour was and the area directly around it. It kind of reminds me of a microwave nuking my insides. This is why the radiotherapists don’t want to damage any more of me than is necessary, hence the exact tattooed measurements.

“Have you had an implant?” asks the nurse.

I snort.

“Do you think my boobs would be this small if I had implants?!”

The nurse titters “Yes you have a point” and carries on the examination. A confused look comes over her face.

“Mmmm there seems to be something in there. But don’t be alarmed.”

(Riiiiiight.) I smile. Nervously.

She proceeds with my CT scan.

“OK Lara. Just looking at your scan, it appears you have an air bubble stuck in your breast.”

Sure.

“Is that normal?”

“I’ve never seen it before. It must have got trapped in there after surgery. I think it’s best you get it seen to before you start radiotherapy as it could effect things.”

I get dressed and have a good feel.

Yep, there’s a large air bubble in my boob. Not dissimilar to a giant freaking piece of bubble wrap.

I book an appointment with my surgeon. My breast care nurse comes along for moral support. The three of us sit there. And giggle. Neither of them had heard of anything like this before. After sticking a syringe in it (I didn’t deflate like a balloon whizzing round the room sadly) the doc shows me what he’s drawn out. A tiny bit of red goo. Barrrfffff. But the bubble’s still there.

An ultrasound later (that doc had never seen anything like it either) I carried on my merry way with the advice “it should eventually absorb back into your body.” And sure enough, a week later, it did. Bubble tit drama over.

So, back to the radiotherapy unit. I’m lying dead still. All Saints ‘Never Ever’ is playing. Never ever as a 14 year old listening to that song did I imagine myself lying here half naked looking like Sigourney Weaver in Alien about to have my tit nuked.

Brrrrrrrrr it’s always so cold in here. They crank the air con up to keep the equipment cool. My nipples are like pistols. I almost expect the radiotherapist to halt dead and stick her hands up on entering and seeing them!

The lovely radiotherapists walk in.

“Ooo it’s cold in here,” one of them says.

“Hang on a minute. I’m half naked. At least you’re all wearing clothes! My nipples are like bottle openers!”

They all chuckle. I am quite funny.

“Ok Lara, see you in a moment.”

The radiotherapists dash out of the room – they can’t be anywhere near the machine when it’s in action. I mean who wants to be near a machine that transmits radiation and can potentially cause cancer?

Oh.

As I lie there on my back, arms stretched up over my head, nipples you could hang a coat on, I think about how at ease I’ve become with being naked in front of all the nurses and Doctors. At least this is a flattering position. It’s certainly the most pert they’re ever gonna look.

The 23 days are a jumble. It takes more than cancer to stop me from going to Glasters. Friday morning straight after rads I set off with my wellies and sequins. It was the best weekend ever, spent laughing and dancing with my wonderful friends who surrounded me with LOVE. I’ve never done Glasto sober before. Who needs alcohol and narcotics when you can have vegan sushi and a gong bath?!

On Monday, full of happiness and my yearly Glasto rebirth of life (I promise you, no narcotics) I drove straight from Worthy farm to the hospital, covered in glitter and grinning from ear to ear in time for my LAST radiotherapy session.

The perfect way to end active treatment.

This post originally appeared here.

Stronger Than I Knew

cancer survivor tattoo

When I was first diagnosed, I turned to my husband and told him I didn’t think I was strong enough to make it through something so monumentally difficult. I didn’t think I had the strength to carry on and the hope necessary to face my own mortality. It turns out I couldn’t have been more wrong… I am stronger than I knew!

If you’ve followed my blog from the beginning you have seen my reflections on personal growth and how I have used this journey as an opportunity to learn more about myself and grow as an individual, a friend and a partner. The insecure woman living in fear who existed prior to cancer is gone. Cancer helped me find the power and self love within that I needed to make this life my own and live each day with purpose and happiness.

When I woke up today, the power of my growth and strength stopped me in my tracks. I was overcome by emotion. After everything I have been through, I cling to these emotions. They serve as proof of my journey — the reward at the end of the tunnel. I made it through a year filled with pain, struggle and heartbreak. Though I am far from unscathed, the strength and confidence I have gained is a priceless gift. I now believe that I am worthy of everything that life has to offer. No matter what my future holds and what challenges I must face, I know without a doubt that I am strong enough to survive and thrive!

The tattoo I got today represents all of this power I feel. I am stronger than I ever knew and I will continue to move forward, one day at a time. My story is not finished and I have so many more pages to add. I hope that my story will inspire you to live your life in the same way. Grateful for every moment and appreciative of your inner beauty and strength. Never underestimate yourself. You are stronger, braver and more beautiful than you ever knew.

Originally published on mycancerchic.com.

Living Beyond Breast Cancer: The Fear of Missing Out

fear of missing out after cancer

After one cycle of IVF, egg retrieval and preservation, 6 rounds of chemo, and 2 surgeries I thought I was done missing out on all the fun. Turns out I was wrong once again. It’s like a sick trick. Each day of your fight, you use the end of treatment as your goal post, your milestone for success and completion. But once you get there, you realize that the end of treatment is only a rest stop in your never ending battle. A milestone worth celebrating for sure, but far from the end.

Many people don’t understand this. They think the end of chemotherapy or radiation marks the end of your fight. I can’t fault them for this misconception because a year and a half ago I too was uninformed. Unfortunately, this is one of the biggest misconceptions surrounding a cancer diagnosis — life after cancer and what it’s really like. Hormone blocking therapy, regular doctor’s visits and reconstructive surgeries and revisions will continue to be my reality for many months and years to come. I’m looking at 5-10 more years of maintenance treatment, all of which has everyday impacts on my life. Joint pain that limits the use of my thumb and dominate hand, hot flashes that keep me up at night, weight gain that impacts my self-esteem, and a plethora of other menopausal symptoms that impact my body from head to toe. So life is far from normal for me.

Despite the ongoing symptoms and struggles, I did what most survivors do post-treatment. I decided to make the most of this life I have to live. Cancer was a wakeup call to live in the moment and enjoy the things in my life that continue to bring me joy. I threw myself back into work, exercise, and my friendships. I took advantage of every opportunity to share my story and work on breast advocacy and awareness in my community. For the past 8 months since my last major surgery, my life has been a pretty amazing whirlwind. I received a promotion at work, grew my blog to new levels, traveled to Europe, collaborated with amazing organizations to spread awareness about young women with breast cancer and started the first Raleigh Young Women’s Breast Cancer Support Group. I even walked the runway in a World of Pink Fashion Show helping raise over $20,000 for women battling breast cancer in Long Island, NY.

all-dressed-up

The more I invested of myself into these amazing causes, the more projects I took on, I began to hear a little voice in the back of my head warning me to slow down. I knew I needed to rest, take a breath, but things were moving so quickly and I didn’t want to miss out on a single opportunity. I’d spent enough time missing out while I was sick, this was my time to live! I wanted to help every young woman who came into my life and wanted to make a difference in the fight again breast cancer.

art-workshop

And then the flu hit. Now some of you may be thinking It’s just the flu what’s the big deal. A few days off work, a few days in bed and you’ll be back to normal… but for me this was like treatment all over again. Post Traumatic Stress Disorder at its best. As I sat in the bathroom hugging the toilet, heaving, the chemo nightmares returned. The fear that I would never get better, and that everyone would move on without me took over my psyche. The fear of never recovering from this stage of physical misery snaked through my veins.

Though, a sane person like myself can differentiate the flu from chemo, the symptoms are actually quite similar and you can imagine how the memories flooded back like a song triggering long lost emotions. While reliving the worst days after chemo (and the dreaded Nuelasta shots), what I remembered the most was this sadness of feeling left out — forgotten. I was fearful and uncomfortable missing out on all the fun and the normal stuff. Sick in bed fighting for my life, while friends, family, and coworkers went about their days enjoying the everyday moments and adventures that life has to offer. I remember feeling alone in these emotions, selfish and confused.

Though almost a year of recovery and life beyond breast cancer has given me a sense of growth and perspective I can appreciate, I share these feelings today to let other women know that you are not alone. I share these feeling to remind you that the fight does not end on your final chemo day, or your final surgery day. When your physical battle wanes, your mental battle begins. You may want to make up for lost time, still fearful of missing out on the moments you used to take for granted. But, it is enough to just live! Sometimes I forget this trying to jump back into the full speed race I was in before. But I can’t maintain that pace. I had to get sick again to remind me to slow down, remind me yet again that I am not invincible and I have to take care of my body. In order to do this, I have to create a new path. One filled with balance, self-care, and gratitude. I may miss out things my friends, colleagues, and family will experience but I just have to believe that better things will be waiting for me around the next bend. Here’s to my new journey, my new path, and may it be a very long one!

vertical-anna-photo

Originally published on mycancerchic.com

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!

Interview With Cancer Survivor Nadia!

young 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, Nadia.  She is a young breast cancer survivor who talks to us about her diagnosis, her support system, sharing her diagnosis, her fertility journey, and so much more!

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Lacuna Loft: When were you diagnosed?

Nadia:  I was diagnosed January 2, 2014 with Estrogen/Progesterone/HER2-neu positive Invasive Ductal Carcinoma, more commonly referred to as Triple Positive Breast Cancer. Originally my doctors thought I was stage I, maybe stage II, based on the mammogram/ultrasound/MRI/biopsy findings. However, during my bilateral mastectomy, the breast surgeon found a second smaller tumor, precancerous cells throughout my breast, and cancer in my lymph nodes. She removed 15 lymph nodes to test them all for cancer. Pathology showed cancer in 6 of those lymph nodes and with all this information I was swiftly “upgraded” to stage III and was told that I could possibly have stage IV breast cancer. Thankfully, my PET scan came back clean and I never thought I would be so happy to “just” have stage III cancer. After a few weeks of recovery from my surgery, I started 4.5 months of chemo – 4 rounds of Adriamycin (a.k.a. the Red Devil) and Cytoxin, and 12 rounds of Taxol with the immunotherapy, Herceptin. I would take Herceptin for a full year and during that time we would add another immunotherapy, Perjeta, to go along with it. After the 4.5 months of chemo finished, I did 1.5 months of full-breast radiation. During this whole time, I was also undergoing the painful and complex reconstruction process with tissue expanders, which would be exchanged with implants almost a year after radiation finished to maximize the chance for the radiated skin to heal properly. After radiation completed, I also started hormone therapy treatments, which I have to do for at least 10 years. These medications essentially put me into daily menopause and I constantly deal with the symptoms and side effects of depleting my body of estrogen, such as bone loss, muscle and joint aches and pains, hot flashes, and many other extremely unpleasant and frustrating issues to be dealing with at such a young age.

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

N:  I had just turned 31 when I was diagnosed and had no family history. I lived an extremely healthy life as a Forester that hikes every day in steep, mountainous terrain for work. Snowboarding, splitboarding, telemark skiing, mountain biking, and hiking were just some of the activities that were a part of my normal routine. I never felt sick, I just happened to find a lump, so I was shocked when I found out that I had cancer. My husband and I live in California, but my family and his parents were back in New England. When we found out that my treatments would take a minimum of 10 months, we decided to move back east to have the support of our family and seek care at the Dana Farber Cancer Institute – growing up with the Jimmy Fund so deeply interwoven into the fabric of MA, there was just no other place I wanted to be when I heard those words, “You have cancer.” I was terrified, and was completely uprooting my life to enter the unknown. That initial period when everything was so new and I didn’t have a treatment plan was the worst. I felt like my life had spiraled out of control and there were so many scary decisions to make. Lumpectomy or mastectomy? Keep the healthy breast or remove it to minimize the chance for new primary breast cancers? Reconstruction or not? Then there were the things that I didn’t really have a choice in. Chemo, radiation, immunotherapies, hormone therapies. Of course I had a choice, but not really if I wanted to accept the standard of care for my diagnosis and give myself the best chance for survival.

There were also the implications the treatments could have on my fertility. The chemo regimen I was given is notorious for permanently and negatively affecting ovarian function. My husband I were hoping to start our family when I was diagnosed, so this news was a complete shock. We were catapulted into fertility consults and IVF cycles to harvest some of my eggs prior to chemo. The process was confusing and overwhelming. To add to all that, there was also the complication regarding what we would do with the embryos we were able to freeze. Because my cancer is hormone driven, and those hormones spike during pregnancy, my doctors wanted me to do years of hormone therapy before allowing me to try and get pregnant. We had offers from both our sisters to be gestational carriers, but they are both older than us, so if we went that route we would have to move fairly quickly. To this day, the fertility issues have been some of the hardest struggles of my cancer diagnosis and treatment.

LL:  Can you share more about your fertility journey?

N:  We recently tried to use the embryos we got from the pre-chemo IVF with my sister-in-law as a gestational carrier, but the embryo did not take and we lost our remaining embryos. It all happened so fast – we went from 7 embryos and 7 chances to 1 to none in 2 weeks. All this time, for the last 2.5 years, I knew this was a possible and probable outcome, I just didn’t bother thinking about it because we had these frozen chances. These frozen chances represented SO much hope and possibility for a life where cancer would lose its vain attempt at taking control of everything in our lives. And just like that, those chances were wiped away. Cancer just takes so much from you.

We are still wrapping our heads around all of this. I suppose all hope is not lost, but that’s a BIG unknown. My doctor has mentioned changing my hormone therapy to give me the chance to see if still have ovarian function and eggs to harvest. If I have viable eggs, there would also be a possibility for natural pregnancy in a few years after I’ve gotten enough hormone therapy under my belt for my doc to feel comfortable allowing that. And of course there are other options, like egg donors or adoption. I really just wanted this to work so our life didn’t have to be so complicated (minus the complications a baby brings into your life of course – but less complicated in the crappy medical-cancer way, which of course is no guarantee either). For now we are just trying to process what happened. For the life of me, I cannot understand how this became our life. I do not understand how we got here. I was there for the last 2 and a half years, I know what happened to me, to us, but at the same time, it seems like a dream, or rather, a nightmare. Someone else’s life. But it’s ours. And while we are devastated from this recent loss, there are still so many things to be grateful for. An amazing, loving, supportive husband. Two amazing families that have supported us through all of life’s challenges. Incredible friends. A sweet, sweet doggie. Dream jobs. A beautiful home and food on the table.

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

N:  My husband has been my rock. He was by my side every. single. step. Every doctor’s appointment, every treatment, every scan, every test. Everything. My parents, my sisters and their families, all of my in-laws, extended family, friends. I was lucky to have a lot of support. We lived with my family during all of the treatments, bouncing between my parents’ and sisters’ houses. My friends and co-workers in California would send me care packages all the time. My nieces and nephews were extra supportive in the way that only kids can be. They would often ask me how I was feeling and as long as the answer wasn’t terrible, the next question was when could we start playing. So I did a lot of playing and coloring and in that way, they kept my husband I sane.

I also had an amazing medical team. In addition to the doctors, I sought acupuncture, massage, reiki, and therapy. My therapist helped me process all the complex and overwhelming emotions I was experiencing, and helped me understand the nature of my diagnosis, treatments, and repercussions. She helped bring to light issues that weren’t even on my radar, so that I was more prepared to deal with them when they did arise. I knew that I didn’t know what I was doing and that there were professionals that knew so much about this experience, so I did not hesitate to ask for help.

I also turned to other women in my shoes, some walking the path at the same time as me, and others further along the path. These women kept me sane. I mostly connected with these women on Facebook, in secret groups and we literally chatted all day, every day, and even every night when we couldn’t sleep from the steroids or other drugs. Some women I “met” on the breastcancer.org site, and others I met through the Young Survival Coalition. I’ve since met many of these women in-person and I can’t tell you how special those meetings are.

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)?

N:  My husband I joke that Candy Crush got us through cancer. Seriously, we played a lot of Candy Crush. Lot’s of Netflix. 24, Orange is the New Black, House of Cards, Game of Thrones. As I said earlier, I also played a lot with my nieces and nephews. I remember one day, my sister left for work and I was coloring with my niece. When she returned hours later, we hadn’t moved. She asked, “Have you seriously been coloring all day??” Yep. And we had so much fun doing it…Because my husband and I had been out of New England for 10 years, we travelled around a lot, visiting friends and family that we rarely see. We also spent a LOT of time with our dog, a golden retriever/chow mix named Chowder. He was my walking companion, and got me up and moving every day during treatments. I actually have a lot of fond memories from that time. I mean, who else can have unlimited time to spend with their family at age 31 without having to go to work? I was lucky to work for someplace that could give my husband and I the time off to deal with the cancer treatments and have the support we had in general.

LL: How did you decide to start blogging about your experiences?

N:  There was no way I could keep my diagnosis a secret. My husband and I were taking significant time off from our jobs and moving across the country. So I decided early on to just be open about it. It was going to be more stressful to keep it from people. My sister-in-law started a posthope.org webpage for me to easily keep friends and family updated. I never intended to blog about it, but many people interpreted my updates as blogging and before I knew it my site had been shared with many, many people. Sometimes that was overwhelming to me, but most of the time I just thought if I could educate some people about my experience, or help someone in a similar boat, then it would be worth being so open about my experience.

LL: Have you found support in unlikely places since your diagnosis?

N:  I have, in many ways. Early-on I was connected to other survivors that were complete strangers to me, through family members of mutual friends. These women helped me through the early, terrifying stages surrounding diagnosis. I will never forget their honesty, kindness, and compassion and I vowed that I would pay it forward and help other women down the road if I could. Since then I have connected with some women online, exchanging emails and phone numbers and making myself available for all the questions that arise when facing this diagnosis and treatment path. Unfortunately, I have also filled this role with a very close friend of mine, but I’m happy I can help her.

I also found myself in a situation where a complete stranger played a pivotal role in helping my recovery. I was concerned about having a quiet place to recover from my surgery since both of my sisters have small children and my parents’ house was closed for the winter. My best friend’s mom’s best friend’s step-mom offered us her condo in Boston since she was out of town for the winter. (In case you haven’t noticed, there is a theme of people leaving the bitter cold of a New England winter). Her place was so beautiful and peaceful, overlooking the Boston Harbor and providing us with the respite we needed so that I could heal comfortably. I will never forget her generosity.

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

N:  I found that sharing my story has allowed me to process my own thoughts and emotions better, and feel less isolated. My posthope.org site allowed me to connect with people that supported me, and I really needed those cheerleaders through my long and arduous course of treatments. It also makes me feel better to think that by sharing my story, I could make someone else feel less isolated or make their experience just a little bit easier. There are so many issues unique to being a young adult with cancer – relationships, fertility, body image, career, identity – with cancer being much more prevalent in older adults, there just aren’t as many resources to help young adults navigate these difficult and confusing issues. If my story can help others realize that they are not alone in those experiences, then maybe some good can come from my stupid cancer.

LL:  Have you encountered any misconceptions around breast cancer and cancer in young adults?

N:  There are also a lot of misconceptions surrounding breast cancer, especially in young women. For starters, I didn’t even realize young women could get breast cancer in the first place! I also didn’t realize how many different kinds of breast cancer there are – every woman’s diagnosis and resulting treatment can be so different, it’s really hard to make comparisons. Treatments can permanently affect fertility. Mammograms do not necessarily save lives. Young women typically have dense breast tissue and mammograms are notorious for not detecting cancer in these women (my mammogram, ultrasound, and MRI did not find my second tumor, precancerous cells, or affected lymph nodes!). Young women without family history also typically do not receive regular mammogram screenings because, you guessed it, they’re too young. Early detection does not necessarily save lives. 30% of all early-stage breast cancer patients advance to terminal, stage IV cancer. And the standard of care does not screen or scan breast cancer patients for stage IV cancer because many false positives or false negatives can result, causing undue anxiety and stress when there is still nothing that can be done to save a stage IV patient’s life. Hopefully that will change (soon please!) with medical advancements. Many “pink” products to raise money for breast cancer research contain toxic chemicals and hormone disruptors that may actually contribute to breast cancer, so it is important to be vigilant about pinkwashing and think before you pink (a phrase coined by Breast Cancer Action). And the HUGE breast cancer walks (think Avon and Susan G. Komen) donate very little to stage IV research, which is what we need so women stop DYING from this UGLY, NOT-BEAUTIFUL-PINK DISEASE. These are just a few things that I was unaware of, so if I can help increase awareness about these things by sharing my story, I will do so.

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

N:  I finished my chemo and radiation in 2014 and my immunotherapies and reconstruction in 2015. I had to tweak my hormone therapies a few times and made the last drug change at the end of 2015, so I’m adjusted to those medications finally. I was off work for all of 2014 and worked part-time through most of 2015. In October of 2015, I went back to work full-time and am just working on figuring out my new “normal.” It’s not always easy, but it is a work in progress. When I was first diagnosed, I remember thinking that I would do my surgery and treatments in 2014 and never think about cancer again. Little did I know that cancer would become deeply ingrained into every aspect of my life. It definitely doesn’t define me, and I would like to say that it doesn’t control me or dictate my life, but it sort of does. There are many moments and some days when I don’t think about cancer at all, and I hope those moments and days become more and more frequent as time goes on.

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

N:  It’s ok to be scared, it’s ok to ask for help. Seek out a therapist experienced in issues common to young adults with cancer. Treatments can cause depression. If you are experiencing depression, it’s ok to take medication – you might only need to be on it for a short time to help get you out of it. The struggle is REAL. You are not alone, no matter how much it feels like it, especially when all your peers are doing normal things like going to college, advancing their careers, travelling the world, getting married, having children. Trust your gut and know that you are your own best advocate – if a treatment recommendation doesn’t sit well with you, ask questions until you understand it and make a decision that you can live with. Know that being positive isn’t all sunshine and unicorns and rainbows. It can be as simple as picking your head up and moving forward every day. And being nice to the people around you. It’s ok to be mad and sad and scared and hopeful all at the same time. There is a roller coaster of emotions that accompanies cancer. Just acknowledge and experience each one and let it pass. You can’t control much, but you can allow yourself to feel what you’re feeling without beating yourself up about it. And know that it does eventually become a little bit better. It will always suck and it will always be scary, but it can also become a little bit better.

Thank you for sharing your story with us, Nadia!

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!