August 17, 2024

"Makai's Magical World"

“If a person continues to see giants, it means he is still looking at the world through the eyes of a child.”- Anais Nin

Witnessing my grandson, in his brief almost 4 years on this earth, explore the world has been the most enchanting gift I have ever received. I may sound biased, but he is pure magic. If only we could embrace every experience as Makai does, our lives would be infinitely richer. A simple walk down the street transforms into a thrilling adventure through Monster truck tracks, and climbing up the jungle gym morphs into a voyage to the moon in a spaceship. A casual hello leads us on a private tour of a home he observed being built from our window over the past year. His boundless imagination, insatiable curiosity, and genuine love for people take us on the most wonderful journeys.

The best example of this was last year when he attended our annual Saturday museum visit to the Minneapolis Institute of Art without me. He insisted on taking his mommy’s phone to record his visit for me. Even at 2 ½, he was already very familiar with the museum. He navigated his favorite sections and shouted, “Oma, look!” as he panned up to capture a sculpture or painting from his tiny perspective. I saw the museum through his eyes, just a few feet off the ground. 

Recently, I took him to see the Keith Haring Exhibit “Art is For Everyone” at The Walker Arts Center. He ran through it, exclaiming, “OMA, THIS IS THE BEST THING I EVER SAW!” I locked eyes with a teacher across the room, and when I said, “Did you hear that?” she beamed at us and placed her hand over her heart. Keith would have been so pleased. Just moments later, he started dancing with Keith Haring’s animated figures, and a museum usher joined him. 

The other day, we took a quick trip to the coffee shop down the street for a snack. On the way, we discovered a dragonfly, some magic rocks, and a magic stick. When we entered the coffee shop, an older man played the Beastie Boys on vinyl. Being the awesome Oma (German for grandma) that I am, Makai is no stranger to The Beastie Boys. Hence, his joy was infectious immediately, and soon, the DJ joined in, dancing with him. Makai didn't stop dancing—not even to eat his coffee cake—until the entire album was over.

Makai has also blossomed into quite the accomplished artist, with a dedicated spot in my art studio where he creates his masterpieces. Recently, he proudly hung his work in our group show, capturing the hearts of everyone who saw it. His artist statement in the catalog perfectly encapsulates his vibrant spirit: "Makai is a visual artist, a performer, and an occasional bus driver." It's no surprise, as he's been known to set up chairs in our lobby, inviting neighbors to "Climb aboard" his imaginative bus. This blend of creativity and playfulness is just another way he reminds us to see the world through the eyes of a child, where art and life seamlessly intertwine in the most delightful ways.

In Makai's world, the ordinary becomes extraordinary, and every moment is infused with wonder. His vivid imagination, paired with an unfiltered love for life, turns the mundane into a magical experience. It’s a gentle reminder that the lens through which we view the world can transform our reality. As I watch him dance through exhibits, capture the beauty of a sculpture, or lead us on a spontaneous adventure, I am reminded that the giants we see aren't always the daunting challenges of adulthood but rather the towering possibilities seen through the eyes of a child. In Makai, I find the gift of seeing the world anew, where every day holds the potential for discovery, joy, and a bit of magic. If we could all embrace life with such unbridled enthusiasm, perhaps we'd find that the world is far more wondrous than we often give it credit for.

June 7, 2024

Farewell Old Friend

“A community of people, that's really what art school is.”

-Ross Bleckner

Last week, we received the heartbreaking news that our beloved alma mater, the University of the Arts in Philadelphia, was abruptly closing its doors after 150 years. Today, that sad event has become a reality. Many of my fellow alumni, whom I consider family, gathered on the steps where we spent countless days and nights. They took a final photo and shared their cherished memories, pain, and frustration.

It feels like losing an old friend we thought would be with us forever. As I sat with my thoughts, tears began to flow, and I told myself, "It's silly to cry over a school." But UArts was so much more than a school to all of us. It was a place where we misfits discovered we weren’t misfits at all; we just needed to find our people.

I remember my first day at UArts vividly. Freshly graduated, I met this insanely cool guy in a grey suit, with a mop of platinum hair. Little did I know, he would become a lifelong friend and housemate. That summer was transformative. We stayed up all night together, pushing each other to complete our projects, learning the perils of gouache, and watching the sunrise over the Henry Moore. We became a family.

I'm not saying my college years were exactly like a John Hughes coming-of-age film, but they were pretty close. Late nights in the sculpture studio, pooling our literal pennies to split a taco pizza at Taco House —whatever it was, we were in it together. Even now, 39 years later, I can still call many of you for art advice, life advice, or just to reminisce. You were there when I found myself, and you really know me. Deep down, I am still that 18-year-old girl who believed a BFA in Sculpture was a great idea, and I wouldn’t change that for anything.

UArts may be physically gone, but it will live on in us forever. The bonds we built there are lifelong. It may sound cheesy, but it's true. Thank you, UArts. And if my favorite professor, Thom Stearns, were still with us today, he would have been on those steps, defending what UArts meant to all of us.

July, 2024

“Don’t count the days, make the days count”- Muhammad Ali “

Hi, I'm Emily-Kate Niskey. Back in March 2011, I was diagnosed with breast cancer after a lump I had noticed 15 years earlier grew significantly. My journey has been nothing like what I expected. I thought I'd just get new breasts and move on, but here I am, 13 years later, with chronic lymphedema, pain, and no breasts after two failed reconstruction attempts and some bad medical advice.

When I had my bilateral mastectomy and reconstruction, I knew recovery would be tough, but I wasn't prepared for the emotional and physical toll it would take. I thought I could handle it, but the pain and emotions were overwhelming. My sister reminded me that it was okay to be upset, so I turned to drawing and writing to cope. During my hospital stays, I always packed my sketchbook and pencils. The positive reactions from the hospital staff inspired me to start a blog.

At first, I wondered if anyone would care about my story, but then other women with breast cancer started reaching out, telling me how much my articles helped them. So, I kept writing. Now, I've built this website to share my art and repost my old articles. Here they are. Thank you for listening.

 March 31, 2021, The Journey/ Shattered

Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. Kahlil Gibran

When I started to write this article I felt like I had to open with an insightful quote and tell you all about my inspirational  “journey”. I felt like I had to stay positive to uplift all of you. Well, I do not feel particularly deep insightful, or uplifting at this moment in time. 

I

FEEL

SHATTERED

Before I was diagnosed with breast cancer I felt perfectly healthy. I was training Capoeira, bodybuilding, and walking a few miles every day, I was in the best shape I had ever been in. I never smoked, barely drank, and avoided junk food. I never expected to get cancer but who really does? I don't like to complain, I never worry about recurrence but lately, my pain has been too extreme to hide. I used to think the high pain tolerance I developed throughout my breast cancer “journey” was a good thing but I am beginning to think that as a result of it, I may have left some major problems untreated. As I write this I realize that I do not like the word journey. I mean, what is a journey anyway? I suppose I have traveled from one place to another but I think the word Pilgrimage is more fitting. I have not just gone on a fun trip to the Bahamas I have truly been transformed both physically and mentally and it is starting to wear on me. 

When I first found out I had what my general practitioner referred to as “aggressive breast cancer” My husband and I were scared, I mean “aggressive” sounds pretty serious, right? So when my doctor told us I needed to have an axillary lymph node dissection. We said “Do whatever you need to do to get it out. After all, she’s the doctor, she must know what I need. Little did I know that removing ⅓ of my lymph nodes was not only unnecessary but would result in two failed reconstructions’ a lifetime of pain, and no breasts. 

Today, ten years later, I am cancer-free but I deal with excruciating chronic pain daily. I have lymphedema in my chest and back, joint pain in my hands and wrists,  and debilitating pain in the veins in my right wrist. Looking at me, you would never think anything was wrong, with my petite frame people don't notice my lack of breasts. I go throughout my day helping run our family business, cooking, cleaning, working out at the gym, and playing with our new grandson with a smile on my face but underneath it all I am a wreck. 

I try my best to pretend that everything is fine. I used to think this was a good thing, but lately, I find myself breaking down in tears at the end of the day. Is it hormones? Is it my facade crumbling? Most evenings I get knee-buckling pain when the veins in my right wrists pulse. No matter how much CBD, THC, Sleepy Tea with Valerian, Ashwagandha, Lavender, and Chamomile I am still woken up every night by stabbing pain in my wrist.  Last summer I started having swelling, numbness, and pain in both my hands,(especially my right)  my thumbs would lock up and get stuck. 

As a right-handed artist, it made it nearly impossible to create my art. When I started taking Glucosamine & Chondroitin Plus MSM the pain in my hands went away and most of my mobility came back in my fingers so I was sure it was rheumatoid arthritis. Removing the pain from my hands seemed to intensify the pain in my right wrist. I started wearing a brace on my right wrist and I feel like it is holding my wrist together and without it, my hand would just fall off like something out of a scary story. 

I finally got health insurance and I figured I would get some tests done to find I have rheumatoid arthritis and deal with it. I was looking forward to some closure but my latest x-ray shows no signs of rheumatoid or osteoarthritis! I just had an ultrasound of my left arm and I do not have deep vein thrombosis. I know I should be happy to rule out these diagnoses but I am frustrated to not have any answers.  I suppose figuring out what I don’t have is half the battle. Or is it?

The notes in my chart say “No further follow-up on this is needed unless you have new symptoms in the area” So, I am supposed to just continue to live in excruciating pain? I really think that the pain in my wrist is connected to my lymphedema now the trick is to find a doctor who understands what lymphedema is. I started searching for a lymphedema massage therapist until then I guess I will just keep smiling. 

December 13, 2017

Drains 

“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.”

― Tara Kelly, Harmonic Feedback 

Anyone who has gone through breast cancer surgeries can relate to this drawing. Having drains coming out of your body seems like such a crazy and archaic notion. But after a while, it became such a regular occurrence for me that I started designing my snazzy drain covers and creating cute outfits around them so I could leave the house and look somewhat “normal.”

At one point in my journey, I had drains in my side for 24 days! So long that my skin started to heal around the stitch that held it in place.

It is incredible how our bodies and our minds adapt to scenarios we could not have imagined before. We are constantly reinventing our new normal. I never really strived to be “normal” because I have always been a little different from my peers. When you go through something like breast cancer and have specific pains, dents, and scars that others have too, you find yourself gravitating toward those people. You find yourself searching for someone who can relate to your physical and emotional pain. A pain that may seem profound and unique to you, but is a pain that many other women out there are feeling.  It is a pain that only people who feel it can truly relate to. You find yourself belonging to a group of misfits like yourself. 

Many years have passed since I wrote these words but the deep scars and chronic pain from where my drains once were remain like a constant reminder of where I was and where I am now. 

June 29, 2016

It's Your Mastectoversary

“Without deviation from the norm, progress is not possible.”-Frank Zappa

So this morning my husband Julius came into the kitchen and gave me a big hug. I was wondering what was up and he said it’s your anniversary. I realized 5 years ago on this date I had my bilateral mastectomy, so it is my mastectoversary, is that a thing? Well, it is now!  

When I think back on what my expectations were it does make me kind of sad. I thought getting a mastectomy was no big deal. I thought they would cut out the cancer, cut off my breasts and I would get free new awesome ones, a win-win! I never imagined the amount of pain I would endure. I never imagined I would still be in pain 5 years later. I never imagined I would have to learn how to live without breasts. I never imagined I would be this strong. I never imagined I would be able to help other women with their breast cancer journeys.

I used to think people announcing their cancer anniversaries was silly, but now that I am here I get it. I mean it is a big deal. While I did not spend the last five years worrying about whether or not my cancer would come back, it is pretty amazing that I made it. I am here and I am stronger for all the pain, and all the loss. Part of me wants to cry, and part of me wants to sing and dance like no one’s watching. I am not sure what the protocol for celebrating your mastectoversary is but it calls for celebration so for now I am going to sing and dance like no one’s watching.

December 14, 2016

That Uterus is So Last Season

I just went to my last six-month visit with my oncologist. I have been going to them for the past 5 years and now it is time to start weening off of these visits. I never really look forward to these visits. The staff at Comprehensive Cancer is so nice but the place is filled with death and sadness, people going through treatment looking like zombies because the chemo is killing the cancer and every healthy cell in their body too. There is always that one woman who is fabulous through it all, I look for her, she is my light in this sad place, she makes me smile, and she makes it all ok. I looked for her today, at first there were only sad faces, the little girl …. And then I saw her, completely bald, in flawless makeup, cute outfit and greeting everyone who worked there by name. 

So I did not expect much from my oncologist, I switched doctors since mine moved office and my last visit with this doctor, the 5th anniversary of my diagnosis showed me that I was just a number to him. He even started to ask me “When was your last mammogram” To which I said, “Yeah, no breasts..”  So when I saw him I told him about the awful withdrawal I went through going off the Tamoxifen I did not expect much more than his “That’s odd” I told him even though I had a DNC and ablation years ago and I am 49 I seem to start getting my period again, like clockwork for the last two months. His answer to this was “Just get a hysterectomy” I do not understand why this is always the solution to everything. These make doctors always refer to my ovaries and uterus like they are a purse that is so last season. The last thing he said to me was “Just let me know when you want to get rid of it”

Leaving the clinic, I couldn't help but reflect on the journey I've been through. Cancer has taught me many things, including the importance of advocating for myself and seeking joy even in dark places. I will continue to draw strength from those who inspire me, like the fabulous woman in the clinic, and remain committed to cherishing and enjoying my life. Despite the challenges, I am grateful for every moment and determined to live it fully

July 6, 2015

Nobody’s Perfect

There is no such thing as perfect. You're beautiful as you are. With all of your imperfections, you can do anything." -Fish, from Courage the Cowardly Dog

I was recently asked to pose for a pin-up calendar featuring breast cancer survivors by my dear cyber friend and fellow breast cancer warrior Stori Nagel. When I first started planning it I saw myself with my prosthetics and started thinking about which outfits they looked good in. My daughter and my husband both said “Why would you wear them, that’s stupid, you need to show other women you can be beautiful without them.  That’s the whole point.”  My daughter Julia always says “Breasts don’t matter Mom.” I knew they were right, but the thought of posing without them put a lump in my throat. You know that feeling you get the day before you start a new school or job? That nervous feeling in the pit of your stomach? Well, that’s how I felt. It wasn’t only the prospect of posing without breasts and with my scars that scared me, it was all the the swelling in weird places, it was the fact that my body was a lot softer than it used to be. I used to take my body for granted, I loved to work out, so I did all the time, I lifted weights, I played Capoeira and I ate healthy. I guess I took my body for granted and always thought that it would stay tight and toned because I took care of it. 

After my breast cancer diagnosis, bilateral mastectomy, and two failed reconstructions... Working out has become very difficult, so my body is not as tight and muscular as it once was. Sure, I still look pretty good, but not like I used to. So the thought of posing for this calendar was stressing me out. I was worried about how I would look without my breasts and how my body would look in general. It was my vanity but I also wanted to come off as a confident sexy woman so I could be a good role model to others who have been on the same journey as me. I thought, “How the hell am I going to pull this off?” I showed my friend Waltriessa some photos of myself before my mastectomy and she said “You stand up more straight in these photos. I want to see you like this always, my friend.” 

After a quick flight to LAX, I met Stori and her family and we started picking out outfits. I did not feel beautiful in any of them. After talking to some friends and my husband I decided between two outfits and the best plan was to stop stressing and sleep on it. The next day I met the photographers, grabbed the two outfits, and set out with everyone to get started. Stori went first and I started to get very nervous, still wondering how I was going to pull this off. I shared my story with one of the car owners and his wife (a fellow breast cancer survivor) and felt the tears welling up. Soon it was my turn and I decided to go with the tiny fitted dress with a crazy pattern. Stori told me, “Don’t think about anything, just have fun.” She applied my first-ever set of false eyelashes, pinned up my hair and I was ready. Once we started shooting I just went with it, they all kept telling me to “pop out my booty” and I just started having fun. The craziest part of the day for me was when the owners of the cars came out to take pictures with us, and they were like giddy boys. They didn’t even notice I had no breasts! Instead of crying like I thought I would, I found myself smiling from ear to ear. I heard Waltriessa reminding me to “stand up straight”, Stori to “not think about anything”, and my daughter reminding me that “breasts don’t matter mom.” I listened to the photographers saying “She’s a natural.” and telling me I look like Amy Winehouse. After we were done I looked at some of the test shots and was surprised at how good I looked. I was expecting to be unhappy with the images but I was so happy with them! I sent some pics to my husband and told him how the guys didn’t even notice I had no breasts. He said “I love you for who you are not by how big your breasts or butt is.  People see your beauty.” (Queue the AWWWWWWWWWS...)

September 9, 2015

Bring The Pain

I’ve had a day, a day of such intense pain, caused by my newly discovered arthritis, caused by my three years of Tamoxifen and it made me think maybe I should just go ahead and get a hysterectomy so I don’t have to take Tamoxifen anymore. You have got to be in a lot of pain to think that a hysterectomy is a better alternative. My oncologist was pushing me to get one for a while so I could go into menopause and take another medication instead of Tamoxifen, I thought he was crazy to suggest I get another surgery, but today I thought maybe...But then I said to myself. “wait, this is irreversible, the damage is done. You cannot undo arthritis, can you? I don’t even know the answer but I am pretty sure that I am stuck with this for the rest of my life. 

People wonder how it is I don’t worry about recurrence maybe it is blind faith or maybe it is because I am often dealing with the aftermath of my failed surgeries and side effects from my Tamoxifen that I just don’t have time to worry about my cancer coming back.

I wrote about smiling through my pain in my last article but like I said earlier, I’ve had a day… It is exhausting walking around all day with so much pain. On my left side, my chest is swollen, I feel like there is a knife in my back and my wrist and thumb hurt so much typing this is extremely difficult.  I am getting scared that I will not be able to do everyday tasks soon. I go about my daily routine as if nothing is wrong, using my left hand all day but how long will I be able to do that? 

Today I did opted to go out with no prosthetics so I would not irritate my lymphedema flare-up in my chest and back. I was feeling pretty sick and so was my husband and daughter so I went out to get ingredients so I could make a batch of healing chicken soup. As I chopped vegetables I wondered who would do this if I couldn’t. When we are sick I make soup, it is what I do. What if I can no longer use my left hand? When I was healing from my surgeries everyone chipped in to help but I knew it was temporary what if this burning pain I am feeling in my left hand right now just gets worse and worse? 

Jim Morrison said “People are taught that pain is evil and dangerous. Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you, your reality. If you feel ashamed of them and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.” Maybe I will feel that way tomorrow but tonight I just want to scream and give someone else my pain to carry.

October 8, 2015 

Doowutchyalike

You're in pretty good shape for the shape you are in.

Dr. Seuss

Last week, I found myself feeling unusually crazy and emotional. I couldn't help but wonder, “Am I losing it? Has the Tamoxifen taken over? Is it controlling me?” These thoughts plagued my mind as I grappled with my emotions. It wasn’t until I took a moment to reflect on my recent habits that I began to understand what was happening. For the past few nights, I had barely slept more than two hours, and my eating habits had strayed far from my usual routine. 

The lack of rest and proper nutrition had taken a toll on me, leaving me on the verge of tears and dangerously close to lashing out irrationally at my family. In that moment of desperation, I decided to lie down on the couch for just 30 minutes, despite it being only 4:00 PM. To my surprise, those 30 minutes of rest transformed me. When I woke up, I felt like a new person and realized that I wasn’t losing my mind—I just needed to rest.

This experience taught me an important lesson about self-care. Sometimes, I tend to overthink and overreact when, in reality, what I need is something as simple as a nap, a good meal, or even a small treat. I must remind myself to prioritize activities that bring me joy and make me happy. After all, I survived cancer. I should cherish the life I have and enjoy it to the fullest.

Taking time to care for myself is not just a luxury; it's a necessity. It's easy to get caught up in the whirlwind of daily life and forget the importance of rest and nourishment. Moving forward, I am determined to make a conscious effort to listen to my body and give it what it needs. Whether it's taking a break, enjoying a healthy meal, or indulging in a little treat, I deserve to experience happiness and well-being.

April 23, 2014

Because I’m Happy…

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better to take things as they come along with patience and equanimity.”

-Carl Jung

I started writing this article last week because I was feeling really sad and a little bit crazy but I couldn’t finish it because I was feeling sad and a little bit crazy. I tend to procrastinate when I am in that zone and think to myself “Why would anyone want to read an article about me whining about my problems?” Now that I am feeling happier and not so crazy here goes...

I am having one of those days, well five days. It usually starts with a feeling of sadness welling over me like a cloud that I cannot control. I know it is coming, I know I may cry for no apparent reason or snap at my kids or my husband. I know I may feel irrationally insecure, that is why I am alone in my room right now trying to avoid screaming at one of my loved ones. It comes from hormonal imbalance from my Tamoxifen, I know that but my upcoming birthday makes me sad too. I know I should be grateful to be alive and cancer-free, but right now at this time I just feel sad.  

On top of this gloomy feeling, my lymphedema in my back is worse than ever and when my lymphedema therapist called to tell me they no longer take my insurance it made me cry. I know everything will be OK but everything is making me cry today. And little things are irritating me, things that I would normally brush off. Like Sports Illustrated bikini model Kate Upton’s statement "I wish I had smaller boobs every day of my life," she said. "I love to wear spaghetti tops braless or go for the smallest bikini designs… Every single day, I'm like, 'Oh, man, it would be so much easier,' especially if people didn't constantly bring them up… If I could just take them off like they were clip-ons." Now, I have been there Kate, before my breast cancer I had 34DD breasts on my tiny frame and I complained about them and wished they were smaller but now after two failed reconstructions I am stuck with breasts that I HAVE to take off so I’m sorry if I don’t feel sorry for poor Kate. 

While some people may think this feeling I get, this gloom and doom is something I can “just snap out of” but it’s not. Sure, I can fake it, put a smile on my face, and pretend to be happy. Those of you who are taking Tamoxifen, going through menopause, or depression can relate. You wish there was a switch you could just press to be OK, but there just isn’t. Today I feel better, I had a great weekend at work and am back to a workout routine. I don’t know where I will be next month but I will take it as it comes.   

October 2, 2014 

Pretty In Pink

In honor of Breast Cancer Awareness Month, I feel the need to voice my opinion on the “awareness month” issue. As a breast cancer survivor, every day is breast cancer awareness day for me. Every time I look in the mirror and realize I have no breasts anymore (yes sometimes I forget) I am very much aware that breast cancer sucks. Every time another friend is diagnosed or god forbid dies I am very much aware that breast cancer sucks! While I appreciate you all trying to raise awareness by posting what color bra you are wearing I don’t get how that is helping those affected by Breast Cancer. 

I am not saying any of this out of any resentment or bitterness, I appreciate great organizations that have helped me like Living Beyond Breast Cancer, Keep A Breast, and Linda McCrary Buckley at the Breast Center at Sunrise Hospital. If a month can truly help raise money for those great organizations to help more women like me I am happy but I do not see the point of Breast Cancer Awareness Month. If it was used to raise money where it is needed like to help women who have no health insurance or to help people like the woman I met online whose health insurance covered the removal of her breast but would not cover a prosthetic breast to put in its place; or the American Cancer Society who never had any volunteers available to drive me to my doctor appointments, a service that they offer for breast cancer patients, or setting up more support groups because nothing helps us heal faster than the support from others who are going through the same struggles. 

I am all for making the world aware that breast cancer is becoming an epidemic in America and something needs to be done about it but what I am wondering is putting a pink ribbon on a product benefiting people with breast cancer or is it benefiting the corporations who are using it? We all are very aware that putting on a pink ribbon on a product will increase sales but do we know how much of the proceeds are going to breast cancer research? The other hypocrisy is pink-washing products that contain carcinogens or promote unhealthy habits. I feel like any month dedicated to a race, a gender, or an illness,  I question the motives.  What do you think?

August 28, 2013

Things Fall Apart

“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”- Marilyn Monroe

Two weeks ago I briefly lost my mind. I know part of it involved the tamoxifen but I don’t want to use that as a cop out. All I know is that I was in a bad place, wallowing in self-pity and focusing on all the things I had not accomplished. I do think that part of resolving a problem is admitting that you have one but now that I am out of the “dark place” I know that I cannot let the knowledge of the problem paralyze me. 

So the main thing that was getting to me was the fact that I am 46, have two master’s degrees, and no real career. I have worked for myself for so long that unless I am applying for a job dealing with Promotions my resume looks crazy. I have started so many great things but never pushed them to the next level. When I was a little girl I won drawing contests, people would line up to buy my caricatures so I went to art school and won art contests there. After art school I was a founding member of Vox Populi, a formidable Philly Art Gallery, we even started First Friday! I did that until I moved and then I stopped. I shot photos all around Philly and New York, documenting the start of Rap Icon careers like Nas, Biggie, The Roots, and The Fugees and then I stopped. I started my art program and taught classes and then I stopped. I could go on but I won’t. I may start to sound like a bitter old lady.

To be honest, the idea of getting a regular office job doesn't excite me. I've done well as a Brand Ambassador (which, for those unfamiliar, I like to describe as a model with a brain), but now it's time to take things to the next level. Since my battle with cancer, I've started some significant projects—my book, this blog, and my Facebook page. While they may seem like small steps, they're accomplishments I'm proud of, and now I need to focus on figuring out how to help them grow. Some people have said this little blog doesn’t matter, I mean everyone has a blog these days. I often wonder how many people are reading it. I am starting to get published in Cancer Publications but I think a part of me fears that that is all it will ever be. I would love to have my national column that touches a ton of readers, in my perfect world this blog will get noticed by national publications who will want to pay me to write, just like in Julie and Julia, I mean that happened right?

My first big step was to get me out of that “dark place”  that I was in and to lay out my book. I thought I needed my husband’s help to do it for me but I realized I had enough knowledge of InDesign to get all the images placed on their pages. That made me feel a lot better. I also started working on my plans for a breast cancer-related business. I think I am onto something with this so I will focus on it. 

Now that I have acknowledged my problem I can resolve it. I may not know much but one thing I know is that I should move forward. I told my sister I was wallowing in self pity and she said “How is that working out for you?” I will try my best to use my gifts to their full potential. I truly believe I got cancer so I could help others. So I will keep writing and talking to all of you. I hope you are listening.

March 12, 2013

Isn’t It Ironic?

Before I was diagnosed with breast cancer I felt perfectly healthy. I was training Capoeira, bodybuilding, and walking a few miles every day, I was in the best shape I had ever been in. I ate only healthy foods, didn’t drink or do drugs and I never had a cigarette in my life! Then I felt that lump I had found 15 years ago when I was 28. That lump had grown so much that we could see it. I had no idea how much my life would change after that day. Even when we found out it was cancer, I just figured the doctor would take it away and I would get the fabulous consolation prize of two perky new breasts, I mean mine had seen better days; I figured at least I’d come out ahead, right? Boy was I wrong!

I think it is ironic that all of my medical problems either stem from complications from my surgeries or the medication;  tamoxifen that I now take every day for the breast cancer I don’t have anymore. Not only has Tamoxifen turned me into an irrationally moody bitch with hot flashes, and mood swings, but now my blood pressure is high and I constantly feel my heart pounding in my chest followed by fatigue. Oh, yeah, Tamoxifen also increases my chances of getting uterine cancer. I am beginning to think that the medication is worse than the disease.

I may need to weigh the pros and cons of taking Tamoxifen. I opted not to do radiation and I know that was the right decision. The other day when I was at the follow-up visit for the surgery I had to fix a problem the tamoxifen caused, my gynecologist suggested that I take antidepressants to counteract the side effects of the Tamoxifen, is it just me or does this all sound a little crazy? I just don’t want to take medication that requires more medication, it feels like a vicious cycle! I know that things could be so much worse and I feel silly complaining about all this when I could still have cancer but like I tell everyone noon is problems are greater or smaller. I will just take it one day at a time and weigh my options; hopefully, my craziness and mood swings will not get in the way.

May 2013

 Just Breathe...

I have touched on this before but I feel like I need to talk about it some more. I have been taking Tamoxifen for almost a year now and I really wish I could take something else. I have accepted the fact that it is normal for my teeth to hurt so much that I can feel my heartbeat in them and my whole face throbs. But this new feeling that I have to gasp for breath followed by the need to pass out is not fun. People keep telling me I am having a panic attack, to just breathe and try to relax but I don’t think that is the problem. I did some research online and learned that a lot of other women on Tamoxifen feel the same way I do. My husband took it one day to see what it felt like and his heart was racing and his face was throbbing.

I had two chest CTs, one standard, one to check for a pulmonary embolism, a heart ultrasound, an EKG, and a 24-hour heart monitor. The good news is my heart and lungs look fine, the bad news is the only medicine I can take to prevent a recurrence of breast cancer is making me feel pretty crappy. Since I am pre-menopausal my only other option is to have a hysterectomy so I can be forced into menopause and then switch my medication. I am sure the new medication has a whole other host of side effects. Some people say, just have a hysterectomy like it’s a haircut. In the past, my oncologist has said to me “Your childbearing years are over, you don’t need your ovaries or cervix, they are just sitting there  waiting for cancer.” I told him I did not have the BRCA gene, I only had cancer in one breast and I did not want a hysterectomy so he has stopped pushing. If there is one thing I have learned throughout my breast cancer journey it is that there is no such thing as minor surgery and the smallest decisions can have the greatest consequences.

My Oncologist’s nurse thinks all my symptoms are from the Tamoxifen and suggests I take Effexor, a mild antidepressant that can help with hot flashes and shortness of breath. I am so torn, do I want to take another pill? It seems every treatment has a side effect or risk that needs to be treated with another treatment or pill! It’s a vicious cycle. In his infinite knowledge, Dr. Seuss said; “You have brains in your head. You have feet in your shoes. You can steer yourself in any direction you choose. You're on your own, and you know what you know. And you are the guy who'll decide where to go.” When people kept telling me I was having panic attacks I started to think, maybe I am crazy, maybe all this is in my head, but I know my body better than anyone else and I am going to listen to it and try to make an educated decision as to what my next step should be. One step at a time...

June 2013

Building A Better Bra

So I recently decided to start using my prosthetics, after all, they are worth about $700 and I might as well try them out for size, right? For some reason, I was feeling like I was supposed to be this role model, this martyr who felt fabulous without breasts. But you know what? I do not feel fabulous without breasts, sure I am tiny and when I walk down the street no one thinks, “Oh My God that poor woman lost her breasts!”  I even get whistled at but I don’t feel like myself. It hurt too much to wear my prosthetics for a while, but I thought I was ready to try. I must admit I did feel a lot better when I first wore them. A friend pointed out that I looked really good, she couldn’t pinpoint what it was, maybe my hair, my tan... I told her I was wearing my breasts. 

I recently realized that I lost my breasts three times, first with my bilateral mastectomy, second with my first failed reconstruction, and, third with my second failed reconstruction. It wasn’t till that last failure that I realized that I would not be getting breasts. I think after that I went through the five stages of grief. At first, I guess I was in denial because I was thinking of trying a new procedure to build breasts out of fat and muscle from my thighs, but after talking to my husband I realized that it was a bad idea, after two failed reconstructions my chances of it working were slim. I was angry too, I still have the urge to throw eggs at my first doctor’s sign when I pass it and since I am being honest I sometimes feel angry when I see someone with fabulous breasts and great cleavage. I am not sure I went through bargaining but my 6-year-old Gideon told me today that he keeps praying to God that he will grow my new breasts. I felt depressed but did not let it overwhelm me. I think I am in the acceptance phase now. I am accepting the fact that I am not getting breasts and I have also just come to the realization that I do not need to be a martyr with no breasts, I look better with them damn it! Now I have to figure out how to work with the prosthetics and awful bras to make it work. 

One thing I have noticed is that these mastectomy bras are not designed for people like me, people who want to wear a cute racerback blouse or a strappy or sleeveless dress. They are designed for older women. Google mastectomy bathing suits and you will see what I mean, they are mainly those suits designed to hide your body with a little skirt attached so I modified my bikini tops and sewed some old cups from old bathing suits together to make pads to put in them. This worked for a while but I started working out in the pool every morning and they do not hold up. I decided to look on eBay for breast forms for my bikini, something a little smaller and lighter. I discovered a whole world I hadn’t even thought of, the world of drag queen accessories, and let me tell you, they have the best stuff! I don’t know why I hadn't thought of this sooner! I found a set of breast forms with cute little nipples for $9.99! I saw many options that I didn’t even know existed. They have these silicone breast bras that are silicone breasts that you wear like a bra. I only saw them in exaggerated sizes but it is a great idea!  This weekend I started wearing my prosthetics in my old underwire bra because they look saggy in my mastectomy bras. This seems to work better but I have to make sure they don't pop out, I think with some modification, I may be able to build a better bra. 

July 10, 2013

Live Like Lola

“A mother's arms are made of tenderness and children sleep soundly in them.”

Victor Hugo

In my journey with breast cancer, I have made some incredible Facebook friends who are going through their fight. One of the most inspiring two people I have met online is a 16-year-old girl named Lauren “Lola” Scott and her amazing mother Cherri Chiodo. I have watched this girl fight for her life for the past three years with a smile on her face. I have watched her mother make sure she gets the most out of every single day, giving her memorable moments and living life to the fullest. I have witnessed adults with lesser illnesses give up, and use excuses to not go to the gym, to not get out of bed, to not enjoy the life that they have! But these two don’t seem to let Lola’s cancer stop them from enjoying their life.  When my journey with breast cancer got me down I would see a post on Lola’s Facebook page of this beautiful young girl and her smile would make me feel better. Her bravery has been such an inspiration to me. I hope she realizes what an impact she makes on so many. 

After three years of fighting her cancer (metastatic retroperitoneal undifferentiated soft tissue sarcoma)  with conventional and nonconventional methods; 5 different chemotherapy protocols, and 36 radiation treatments to her pelvis (that caused her to go into early menopause and stunted the growth of her uterus), and cryoablation treatment to freeze the tumor in her right lung. Lola’s doctors recently told her that the disease in her lungs has continued to grow. She started on Cannabis Oil (which was donated anonymously and would have cost them  $3,000) in the hopes of shrinking the tumors. But she also signed a Do Not Resuscitate order, imagine singing at DNR at 16! After signing her DNR she did not wallow in self-pity, no she decided to get busy living and created a bucket list, and a blog and started filling it. 

Lola and Cherri just got back from LA, Lola has had a lot of pain and nausea but still made the trip and they crossed a lot of things off her bucket list. Yesterday they were on their way to New York City where she planned to cross “See the Statue of Liberty” off her list but on their layover, Lola requested to go back because her back pain and severe nausea/vomiting had gotten worse. Cherri and Lola went to Oakland and she has been admitted to Children’s Hospital where they are helping manage her pain.

On August 8, 2013, Laura “Lola” Chiodo’s battle with cancer finally ended. She was 16. Her mother Cherri said "At 8 a.m. this morning, my beautiful daughter left her physical body to embark on a new journey, one she was eager to begin. Our hearts are heavy with sadness, but the thought of her soul being free from cancer brings us comfort. I can feel her joy as she dances with so many loved ones now. Her capacity for love will always amaze me," 

Just three days after Lauren’s passing, her singing idol, Demi Lovato, honored her during a speech at the Teen Choice Awards. "I dedicate this award to a new little angel in heaven named Lola. We love you," she said.

Throughout her battle, Lola underwent 36 radiation treatments, and five chemotherapy sessions, and faced two relapses when tumors spread to her lungs.

For those of us who don’t want to get out of bed today, we all could learn a lot from these amazing women and LIVE Like Lola!

July 6, 2012

Finding My New Normal

“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.”

― Tara Kelly, Harmonic Feedback 

I am finally off the couch after 4 weeks! I am feeling much better but not my old self yet. I guess I never really will be my old self again, will I? That person is gone, not only in body but in spirit as well. Cancer changes you in ways you can’t understand unless you have gone through it.  It’s funny when I walk down the street no one notices that I have no breasts, no one knows I have not worked out in 4 months, no one knows that I fought breast cancer, no one knows the hell I went through this past year.  

Yesterday I went to say goodbye to my wonderful plastic surgeon and his team. It was bittersweet, and while I am certainly glad that my chest is not ripped open and leaking lymphatic fluid; I will miss them. As my Dr recently told me we have become like family, going to see them and calling them whenever I had a concern had become part of my routine. I guess this is why some people become hypochondriacs, if I did not have my family and a life to get back to I might do whatever I could to keep my doctors in my life. It is very easy to get stuck in the routine of being a patient but I have no plans of doing that. I need to make a new routine for the healthier me.

I keep saying I will find my new normal but I haven’t thought about what it will be. I have started a new wardrobe of loser blouses so my lack of breasts is not noticeable but that is an obvious change. This tumultuous journey has changed me. A fellow cancer survivor recently asked me how I have changed after battling breast cancer. I thought about it and realized that I guess I am stronger than I thought I was. I figure if all these people keep telling me I am an inspiration, I am strong they must be right huh? Just like Christopher Robin told Winnie The Pooh, “You're braver than you believe, stronger than you seem, and smarter than you think.”

So, when I envision my new normal I see myself getting back into shape, finding my new sexy, publishing my book, and growing this site so I can help other people with their breast cancer journey. I will be aware of any changes in my body just like I always have but I will NOT LIVE IN FEAR! I will embrace the new life I have and be grateful for it. 

 May 15, 2012

Don't Cry Because it's Over, Smile Because it Happened

Over the past year I have been cut open, had body parts removed, replaced, and lost again and again. I have had tubes installed and taken out of my sides so often that having a drain or two coming out of my body has become the norm. I have gotten out of shape, and transformed my body into a bodybuilder,  only to be forced to take two months off from the gym! Now I find myself in the same place I was 9 months ago, healing from the loss of another expander with a drain coming out of my side. But this time it’s different, this time reality has set in, and I have to accept the fact that having breasts again may not be in the cards for me. 

The wonderful Dr. Seuss once said, "Don't cry because it's over, smile because it happened." I am not ready to smile just yet, I’m still in the crying stage. It’s funny how an article of clothing can trigger so much emotion, I just walked into my closet and found a cute low-cut negligee  I had bought as a Valentine’s Day gift for my husband. The realization I would never wear it was just too much for me; I had to turn my head away from my son as I sobbed over the loss of my breasts AGAIN! I had been saving all these cleavage-revealing clothes in the back of my closet to wear when my reconstruction was complete, now I will never wear them. It may sound silly,or vain but having cleavage again was something for me to look forward to. 

Let me recap the last two months of my life. After healing from the loss of my first expander on my left “breast” which included intense weight training at the gym; my doctor decided I was ready to try again. As soon as I got my second expander put in it did not feel right. You could see the edge of it poking and stretching my thin skin and trying to poke its way through. The skin remained red and shiny for two months but because it never swelled up my doctor just said to give my skin time to thicken up. 

The pain kept getting worse, I even gave in and started taking those nasty pain pills. Last week a little spot of the skin on that “breast” broke open. I went right in to see my doctor and we discussed alternative methods of making me new breasts, just in case this does not work. He said, “I am not saying this will fail, but it is better to discuss this now while you are calm rather than if you are crying with a gaping wound.” Little did we know that this very scenario would come true a few hours later. 

Later that afternoon, I took a pain pill and laid back to do some work on my laptop when I noticed my shirt was all wet; I knew right away I was leaking fluid and this was it, the expander had to come out. My doctor called and agreed that it would have to come out on Monday morning and I was to go directly to the hospital to be admitted and pumped with lovely antibiotics to spend my birthday/mother’s Day weekend in the hospital. 

I have been on an emotional roller ever since. I decided that I AM DONE! I just don’t think it’s worth the risk.  My doctors want me to attempt to make breasts out of an otherwise useless muscle and fat from my inner thighs. They tell me “It’s like a thigh lift.” But, the thing is, there is no guarantee that this exact thing that happened the last two times they tried to fix my breast won’t happen again. I do not want to put my family through any more worry, or my body through any more mutilation, I just want the other expander out so I can get on with my life!  As my husband says,” There is no such thing as minor surgery.” 

That being said, I am still mourning the loss of my breasts. I have barely slept in a week and a half so needless to say my emotions are all over the place! Every time I take a shower I notice another bruise or scar from being poked, prodded, or cut open. They remind me I need to stop all this! Everyone keeps telling me I don’t need to decide anything yet, I can always reconstruct later but I think putting myself through such hell just to have breasts is sending a bad message to my teenage daughter.  Throughout all of this, when I would ask her if my uneven breasts looked OK, she would always answer “Mommy, it doesn’t matter.” She is at such an impressionable age when her body is changing daily. I would hate for her to think that breasts were so important that it was worth the intense pain and health risk.

There are many types of loss: the death of a loved one, the end of a relationship, the loss of a material object but the loss of something which has defined you as a woman is a whole other type of loss entirely. It can cause you to lose your identity and force you to humble yourself.  I have always had a “nice figure” I have always kept in shape and although my 34DD breasts had seen better days after three kids I still looked pretty damn good. Now, I have to come to accept the fact that:

I may not be in the best shape right now but I WILL bounce back and I can still be beautiful without breasts. The most important thing is I am healthy. Recently many women with breast cancer have reached out to me. Hearing their stories put things into perspective for me. I spoke to one woman who has breast cancer and AIDS, one who is finishing up her Chemo and about to have a bilateral mastectomy and has no health insurance. Another woman’s breast cancer has moved into her bones and an old friend of mine has been fighting cancer for SEVEN years! I have to realize that I am blessed.  I will just take it one day at a time!

April 15, 2012 

Don’t Push Me ‘Cause I’m Close To The Edge

“Never cut a tree down in the wintertime. Never make a negative decision in the low time. Never make your most important decisions when you are in your worst moods. Wait. Be patient. The storm will pass. The spring will come.” -Robert H. Schuller 

Ever since I was diagnosed with breast cancer I have managed to maintain a fairly positive attitude for the most part.  Don’t get me wrong, I’ve had my moments when I snap at the kids and my husband for no apparent reason, but most of the time I am grateful for each day. But there are days when I don’t want to open my mouth because I am afraid of the words that may come out of it. There are days that I just want to cry and there are days when I feel just fine. It is almost like going through puberty all over again;  I have to learn how to navigate this roller coaster ride of emotions. I don’t want to be this person; fragile, crying all the time.

Some days are better than others. Sometimes I go for weeks feeling just fine, feeling no side effects of my Tamoxifen, and then BOOM! I wake up with a lump in my throat, and tears in my eyes, my whole body is shaky and hot. Tamoxifen is an estrogen blocker that I have to take for the next 4 years to prevent my breast cancer from coming back. Tamoxifen seems to make me irrationally insecure, which is not happening at the best time since I was not allowed to work out for the past 4 months and there are two scars and dents where my 34DD breasts used to be.

A few days before one of my surgeries my husband and I went to the gym. I was working out pretty hard 5-6 days a week and was sad to have to stop my exercise routine. On our way to the gym I began shaking and started getting hot flashes, we thought a snack might help but it just made me feel worse. By the time we got up to the gym, I felt like I was going to pass out, so I curled up in a chair and went to sleep while my husband worked out.

I guess I just have to listen to my body and lie down when I need to. I guess I need to be more patient and know that tomorrow I may not be able to run out to three stores, feed the family, work out, and still have the energy to get some work done. I need to get over that guilty feeling I get when I feel the need to take a nap and put whatever I am working on hold. Some days I may need to slow down, take a nap, a cold shower, or go have a good cry because tomorrow will be better. As long as I  have my health and the love of my family I will be alright.

April 5, 2012

Axillary Lymph Node Dissection: Think First

As I lay in bed healing from another surgery I feel compelled to write this so maybe I can prevent others from suffering the way I have. Keep in mind that I am not a doctor, just a breast cancer survivor who is expressing my opinion based on my own experiences. 

When I was first diagnosed with breast cancer, my husband and I were shocked and scared. We both thought we should do whatever the doctor suggested so I could get rid of the cancer quickly. So when my doctor, a general practitioner, not a breast cancer specialist, suggested I have all the lymph nodes under my left arm removed I thought nothing of it. I was so focused on the big C; that I just followed her blindly. 

In hindsight, we really should have done our research. At the time I did not even know what lymphedema was, I didn’t know how important your lymph nodes were and I did not know that she would check all my lymph nodes for cancer except the sentinel lymph node (the first node you are supposed to check!) 

Since that decision, I have had complications with every one of my numerous surgeries. I have filled up with lymphatic fluid again and again, I have had drains installed, removed, and put back into my body until my left side looks like a pincushion. Finally, I watched my left reconstructed breast fall apart until the expander popped through a hole in it! Now I lay in bed healing from my second expansion surgery, praying that this one will take!

Axillary lymph node dissection used to be a common practice in breast cancer patients. There has been a recent campaign to put an end to unnecessary and excessive cancer treatments. Many of them not only do not help breast cancer patients, but harm them! I am living, and breathing proof of that!

A recent study on axillary lymph node dissection in breast cancer patients disproved some of the old ways of thinking. The current scanning technology is not able to detect tiny tumors that could be present in the lymph nodes leaving the only effective method available for completely checking lymph nodes is removing them surgically. But, this means countless unnecessary surgeries will be performed on breast cancer patients like myself whose lymph nodes were free of any cancer. 

Over the past ten years, surgeons have been performing sentinel lymph node dissections instead of axillary lymph node dissection, a much less risky procedure. In sentinel lymph node dissection surgeons simply inject a dye near a tumor to determine which lymph nodes drain directly from the tumor. If the first lymph nodes removed in surgery are negative for cancer, then the chances of more lymph nodes testing positive for cancer are very low and the patient does not need to have axillary lymph node dissection. This information would have been very helpful to me before I made my decision!

While you may think axillary lymph node dissection is the right thing to do, take it from me, before you get an axillary lymph node dissection: think first, talk to a specialist, and do your research!  Sure, initially I was thrilled to hear my lymph nodes came back negative but I may be facing a lifelong problem and may never be able to have a successful reconstruction!

There has been very little research on the risks of complications and what women should do to reduce their risk for lymphedema and infections. If you have had axillary lymph node dissection already, very recent studies suggest strongly that some of the instructions given to you by your doctor have the potential to increase the risk for lymphedema. You must be your advocate for your health!

April 4, 2012

Friendship is The Best Medicine

It's the friends you can call up at 4 a.m. that matter.

-Marlene Dietrich

I want to welcome you to the first blog installation. A lot has changed in my life in the past year. I was diagnosed with breast cancer in March 2011 and my friends played such a major part in my recovery that I decided to create an online community and resource for anyone touched by breast cancer.

My goal is to facilitate connections and create friendships between breast cancer survivors, their friends, and their families in an online community with an open forum for questions, answers, and words of encouragement.

When I was diagnosed with breast cancer, doctor’s appointments, lab tests, surgeries, and trips to the emergency room became weekly occurrences. Living 3000 miles from family and friends without a driver's license or car left me frustrated and lost. Thankfully, my new friend Karin, whom I had just met a few months before my diagnosis, volunteered to take me to all my appointments. But she did more than that, she held my hand when I was scared or in pain, made me laugh when I wanted to cry, and bought me monkey pajamas! She even emptied my drains and helped me bathe and get dressed. I honestly don’t know how we could have done this without her.

Beyond Karin’s help, thanks to social networking, old friends and family members I hadn’t talked to in years reached out to me. I spent many sleepless nights chatting online with old friends and family. I know that I got stronger through my friends' support. When so many people told me I was strong and an inspiration I started to believe them! I know that having a circle of friends to lean on did more than put a smile on my face, it boosted my immunity and lowered my risk of recurrence.

A U.S. study showed that women fighting breast cancer who had 10 or more good friends were four times more likely to win their fight than those who did not. The support of family was proven to help as well. Women with the support of close relatives had a 2½ greater chance of overcoming breast cancer than those who did not. I know the hugs and kisses from my husband and children and the visits from my sister and dad were the best medicine I ever had!

Love is the best medicine. Without love and support, all the pills, radiation, and chemotherapy will not be as effective.  Anyone can benefit from the love and support of unconditional friendship. If you are battling breast cancer I urge you to reach out to a friend or family member. If you aren’t battling breast cancer, I urge you to reach out to someone who is. Sometimes just a hello can make all the difference.  My battle with breast cancer has made me realize, more than ever, the impact of the small and large gestures of friendship and I urge you to take a moment. each day to reach out to someone with a hug, phone call, text, or email. We cannot do it alone, you can be the strongest person in the world but without the support of a true friend, that strength will falter.