I have Cancer

I sit here today on what is known as metastatic breast cancer awareness day, I feel the lump in my neck starting to disappear. I wonder about the other spots from the PET/CT Scan if they too are either gone or if they are smaller. A scan in a couple of weeks will show what my fate will be when it comes to make a decision on which road I will take. Is this my life now? How did this happen? If I think about that or ask myself these questions I become quite scared and feel like my life is about to come to an end.  I decide to not focus on those questions each day instead I focus on how I feel and what I need to accomplish. How do I say that I am metastatic? I have not been able to say that quite yet and in fact have told people that I don't believe I am, perhaps I am hanging off of a cliff and looking down into the dark depths of the metastatic abyss. Does this mean death if I do make that last fall? One more notch up on the totem pole of breast cancer stages? Unfortunately it is the final stage, one we all fight to not want to stand upon. Yet, there are many women who do stand upon this stage. They are mothers just like myself, wives, sisters, daughters, best friends, bosses, teachers, girlfriends....the list does go on. They rely on medicine to keep them alive for months and years to come. They search the news for new research or maybe clinical trials that may be opening up that could possibly pertain to their status, however that is the problem. The research we walk for or raise money at the 'pink' parties hardly ever hits this stage. The money goes to raising awareness for the future women who may become diagnosed. I agree awareness is key, I have done my checks and did them before having breast cancer, in fact a check helped me find my lump in my breast. However awareness for becoming diagnosed with Stage IV breast cancer is very necessary. According to Metavivor, an organization who raises funds solely for metastatic research, 30% of women who have been diagnosed with early stage breast cancer will become diagnosed with Stage IV.  How do we help this 30%? We need to fund research and groups dedicated to making Stage IV (Metastatic) breast cancer a chronic condition.
I now have a chronic condition, as my doctor told my husband. In order for you to understand what this means, I would like to tell you my story. I was diagnosed at age 34 with Stage III Breast Cancer. I have no family history and I was not at risk for developing this disease for any reason. I was a young mom when I found out, my son just turned one and I was preparing to have another child so he could have a sibling. I remember finding the lump one afternoon while relaxing at home. I felt a twinge of pain in my breast bone leading to the outer part of my right breast. I rubbed from the breast bone towards the area and felt a hard lump. I remember pausing and thinking, how did this get here? I was breast feeding however, I was in the later stages of breast feeding so for a hard lump to have developed from lactation seemed strange. I had my husband check the lump, he is a general surgeon, and he seemed concerned. We went to have the lump checked by ultrasound and I was sent home with the confirmation it was due to breast feeding and to keep an eye on if it grows.  A month or so later I went back to have it checked again and this time I was not told to go home and not be worried, I was told a biopsy was necessary and immediately. I remember being in that room with a couple of the nurses sobbing, one of them took my hands and said to me, "It is a small lump, it will be early stages." I felt comforted by her words but little did I know that this is what I would keep hearing from everyone as each test was performed and as each test was completed my stage would go up. Finally as I was teetering on Stage III, which means it had reached my lymph nodes under my arm, I was thinking to myself this is it, I am on death's door if we go up one more time. We had one more test, the PET Scan. It is a scan that shows if the cancer has spread beyond the lymph nodes and into distant areas in the body, which would mean metastatic. I held my breath when we got the call for the  scan, it was clear. I felt like my life was renewed and I would be alive and well to see my son have his own children. Until, I read one day on a page about breast cancer that it can indeed come back. In fact, the chemo I was taking at the time could possibly not work. How could this be? I was killing myself to stay alive, putting toxins in my body that sometimes left me lifeless for days yet they may not work? Well I did complete the six months of treatment and as I was recovering I would discover a hard lump in my neck. I was at dinner with my husband having a date night out when I went to rub my neck and felt the hard lump. I knew instantly it was cancer. We asked the waiter if we could get the check even though we had not gotten our food yet. We told him we had an emergency. I did not want to eat my meal, I wanted to run outside and keep running down the highway. It had returned and quite soon too.  We got our biopsy results the same day I was cheering on the Susan G Komen 3 Day Walkers walking by my house. I was holding up sparkly pink signs saying, "Thank You!!" I was also ringing a bell, my hulabelle which would unfold a new path for me later on.
The results showed the cancer had returned only in my neck, this is called  a regional recurrence which still put me in Stage III since it had not spread to my organs or bones. I was again relieved and felt like I had another chance at life until the ENT Surgeon told me that he was not able to operate.
I felt numb, sitting on the couch, what do you mean you cannot remove the lumps in my neck? He told me that the lumps were in a tight spot and by the time my neck would heal from the surgery I would probably have cancer in other parts of my body. He said I needed medicine and I had more of a global issue.  I was terminal. I kept thinking to myself that I was incurable. If the medicine did not work before how was it going to work again?
I went to my oncologist and he had a mix of drugs for me, one of which was the controversial drug Avastin which the FDA stopped approving for breast cancer due to many risks. I was quite skeptical the meds would work and thought my life was over. I started the treatment plan immediately and soon the lumps were melting away. I was shocked. The meds could work and maybe I would be saved again! We had another PET Scan and it showed NED and I was put on a hormone drug and sent on my way.
Well just this past couple of months, about four years later roughly, I have been re diagnosed with another lump in my neck and small nodules under my arm, in my chest wall, and in my lungs. The doctor has yet to call me metastatic although it has been toyed with since we are not sure if the spot in my lung is cancer since it is too small to biopsy. We are back on the same meds from before and so far it is working again. Yet, what happens after this treatment? I had four years the last time and my doctor said to me he is not sure the oral med I will be switched to will work. Do I have to go back on chemo again? Will they run out of drugs? Will I want to give up? Will my body give up from all the wear and tear?  This is the road of someone who has to deal with cancer in their life. It is not a party, it is not glitter and ribbons, it is not about saving the boobies. This is about saving a life.  There are many women like myself who are living their lives, relying on different meds since cancer is a smart bastard it can change at any moment. We need endless amounts of options, we need research, we need help.  So, I now have decided to wage a war on metastatic breast cancer...it has killed too many women in my life. It has been tormenting too many of my friends and survivor sisters. We are going to save the women...will you join me and save the women with me? Because if you do you might be saving my life.

LA Swim Week Here We Come

Have you ever watched Sex In The City and saw the ladies head to New York Fashion Week and wonder do people really live that sort of life? I always wondered what it would be like to sit on the sidelines and watch the models parade down the runway with the dresses swishing behind them or teetering on six inch (maybe higher) stilettos. I always used to watch the runway shows in the 90s during the time of the 'supermodel' and think how fun all the craziness the fashion world looked.  I would read fashion magazines religiously..sneaking down the nearby country mart and use my babysitting money to buy Harper's Bazaar, Vogue, or at the time Seventeen Magazine. I would sit in my room and study the clothing, try to mimic the makeup with my own eye shadow and lip gloss. I was not allowed to wear concealer my mom would always tell me, "You are too young to conceal your skin, it is perfect wait until you are older than you will know what I am talking about." I could never understand but yes now that I am older I do. I don't have as much time today to read all the magazines and study all the clothing or makeup, being a mom and business owner is to blame. However I do read more business related publications such as Women's Wear Daily to keep up with the trends and see how the retail marketplace is shaping up. The fashion world that I am apart of now is more of the behind the scenes, trying to create pieces that mean something to women who have seen a dark part of life. It means to struggle, cry, celebrate small victories, grow thick skin, become friends with those who one might never have met in another lifetime, and most importantly it IS to have fun but to be smart about what choices you make for your line.

I was invited to be apart of LA Swim Week a few months ago. When I received the invite I was quite excited. I remember telling my husband that I would love to see my swimsuits on the runway, a dream that I would love to make a reality. However, as we sat down and looked at the costs...having to create new pieces for the show, paying to be apart of the show and of course needing to get all of my patterns, fittings, and materials complete within the course of a couple of months on limited means it meant a lot of stress. I realized quickly that this was not my time to shine...not yet. Instead I am going to sit on the sideline and applaud  the hard work other swimwear designers have accomplished, maybe make new friends, and enjoy an evening of celebration and effort.  To be in this industry a company has to make very very smart decisions to stay alive and I want my line in particular to be apart of this magical world for a long time. It is to help women and to give back so it needs that lifeline and to be the mother of this new infant that I call Hulabelle it means to mother it so at one point it will be a be able to stand on its own without my protective arms around it. 

A meaningful story about my husband and myself...I told my husband that I was going to be in LA for the evening and he was alarmed. He forgot to get the day off so he could take care of our son. He tried with all his might to get the day off but when he went to work he looked at his day and called me. He said to me that he had three breast cancer cases. I said to him there is no way he can postpone those, and he never would in the first place. I eventually was able to find a sitter for my son but I felt that it was ironic as my husband operates on newly diagnosed breast cancer cases, I am going to an event that will someday help to promote my line that will help those women today.  We both are working on opposite ends of the spectrum to help women diagnosed with breast cancer. If it involves an operating room or a runway we both are doing our part to make a difference.  

d’curve news

Sourcing for breast cancer survivors

A note from Dana...

Life is unpredictable and as a breast cancer survivor I never thought that I would be sitting here today, missing a breast, on medication and hoping for more time. I take one day at a time and as each day comes to a close I thank God for allowing me to be with my family. I decided to share my story here on this blog and through my swimwear line because I know there are women out there right now who are in the dark. They need that light so they too will be able to move forward. I believe instilling hope in women can be life saving. It can get the newly diagnosed through the first chemo treatment or allow them to ring that bell after the final radiation. I may not be a doctor, Lord help us if I were what a disaster that would be, but I do know with this blog about trends I may be able to help. I love fashion and trends. Although after my diagnosis my thoughts of shopping and having to wear the best shoes or clothes became not so important. However, I still wanted to look and feel beautiful.  I found it quite difficult to search for hip trendy options for women like myself. I walked into my favorite department store and saw the matching bras and bottoms for women yet I did not fit into the bras any longer. I decided to bring awareness for the brands that do bring options to survivors. I will be in the future writing about brands who have items that could make woman feel great and make life fun again. The brand today is Red Fern Lingerie. I met the owner Tina online and we became instant friends. She is a survivor like myself and knew that woman needed hope. I have included a link to her website so you can purchase a bra from her. Please check back often to this blog as I will be writing about people like Tina who are making a difference in this world. The difference is giving woman hope after having faced the ugliest of diseases. Thank you....Dana Dinerman 

Hulabelle is proud to promote Red Fern as a fellow brand making a difference in the world for those who have endured the harshest of diseases. As women, we like to feel beautiful and Tina Doeihi is giving us a chance to feel that way with her beautiful high end line of lingerie.  Red Fern Lingerie is a successful lingerie brand creating European quality lingerie, even more interesting the designer and CEO is a breast cancer survivor.  An Australian native, Tina Doeihi endured the full treatment process a mastectomy, chemotherapy, and Tamoxifin.  Tina came up with the idea for the lingerie line was after a fitting process for her post op bra. 

The story we all understand and know well, Tina walked into a shop and found the bras to be not fashion forward and very uncomfortable. Tina is used to wearing quality brands such as La Perla and Elle McPherson to name a few so she knew being at such a young age (37) she needed to create something better than the what was out there. Tina has dedicated herself to making such a line and has done so by using quality fabric from Europe. She understands that even though our bodies have changed that we don’t have to be punished by wearing ugly uncomfortable bras.  There are multiple styles and colors to choose from and each come with matching bottoms. The typical mastectomy bras do not have this option which truly makes Red Fern a more quality choice for breast cancer survivors.  

Remember at check out to select a charity for a percentage of earnings to go to. Tina is devoting her line to multiple causes and at the end of each year, which ever charity received the most donation requests Tina will devote all donations to it.  Be sure to visit her site at www.redfernlingerie.com and purchase a set today.  Also, gift cards are an option if wanting to buy something for a loved one, yet a question about size and fit comes to mind. Red Fern Lingerie is about women feeling beautiful after facing a dark diagnosis. We know the silver lining shines bright with this brand made for breast cancer survivors. 

The line has been created...this is where I have been for the past few months/years? What does it take to create a swimwear line? A lot of grit, determination, and thick skin. It is a costly business too...not cheap. I sit here today though with mixed feelings. Yes, there are events to attend, emails to send, customers to talk to however, in the back of my mind I want to be sure that my point is being made with this venture. This is not just a line for women who have endured breast cancer. It is not a line for the regular women either. It is a line meant to bring women together. It is about being inclusive. It is not to separate us from each other, as I had to face when I went to purchase my first piece for post op. I remember it was before my surgery and I was asked to get a camisole that would have pockets in it for drains. It was soft and had removable pads in the breast area so I could have padding in place of my missing breast. I did not like the smell of the fabric and thinking of it now makes my stomach turn because this is what I wore after my mastectomy surgery. The camisole only came in a pink nude color and was not attractive. I would not be able to wear a bra until my drains were removed and all was healed so this was it for about a month or so. I was thankful to be able to go to my favorite department store, Nordstroms for the fitting and purchase yet it was bittersweet. As I waited for the sales clerk to come out and help me I had to wait by the racks filled with lacy bras and undergarments. It hit me then that I was no longer that girl who was going to be able to walk into Nordstroms or any fine lingerie store and have a fun filled afternoon shopping with my girlfriends. I was different now and not included in the mass majority. This was a hard pill to swallow, more difficult than any tangible pain pill or chemo iv to puncture my skin. How can I be only 34, a new mom, a young wife, and preparing for a surgery that will scar me for the rest of my (short?) life. I remember trying to find a spot in the department that would not mange to cause tears to come to my eyes. I then turned and faced the bridal department and that was the icing on the cake. The delicate white night gowns, silky bottoms with sparkly jeweled letters saying bride. This took me over the top, I was just married a few years before and remember planning my wedding day, taking my vows in sickness and in health very seriously but imagining myself at 80 and caring for my sick husband. This moment in time I remember feeling as if I was a visitor from another planet looking in a window filled with life, happiness, and no worries. At this moment the sales clerk approached me with concerned eyes saying she could help me get fitted for the camisole. I sat numbly through the process, barely listening to her explain how the pockets work for the drains. I remember having to fill out the stack of paperwork for insurance and this was done in the back so there was privacy. I walked fast out of the store, not wanting to stop and look at any other item, my car was my safe place. I then thought my life was over as I sat in my car with tears in my eyes.
That is why I sit here today...because I do not want women to go through this process in the future. There are plenty of cases of women going through surgery of some kind, not just mastectomies, who need coverage or something more than a string bikini. I have met mothers who would like to still look sexy but don't want to flaunt everything because they have to worry about chasing their children around the resort or beach. Plus many of us have stretch marks from pregnancy or breast feeding. I hope that my line can bring some hope to those women. I would like to hold these women by the hand and walk them into Julie's Beachwear in Del Mar and say yes you are included here now. It is not a question of are we included, it is a statement that yes we have options and we are still apart of this society. No more backrooms or secret looks, this is something we need to support and be proud of. I hope that you all will support my line and what it stands for...get the word out and hopefully my line will stand among the other brands who are trying to make a difference in giving back and giving hope.

Swimsuits designed for breast cancer survivors - CBS News 8 - San Diego, CA News Station - KFMB Channel 8

Swimsuits designed for breast cancer survivors - CBS News 8 - San Diego, CA News Station - KFMB Channel 8

When In Doubt...

I have taken a few days off from sewing and designing, although I did have a day of ripping out pictures from swimwear catalogs that come to my home quarterly. Why do I need to do this? Well, this is how the entire idea really began. I will rewind (if that is even a word anymore) to when I first came upon my swimsuit idea. It was the beginning of spring, the flowers were starting to make their way out of a winter slumber and I was slowly completing the process of chemotherapy. I stumbled out of my room from a morning nap, thankfully the nanny had taken my then one year son to the park, and the house was quiet. I noticed on our dining room table a stack of mail. The first piece of mail was from JCrew. I decided to have a snack and flip through my favorite catalog. Although at the time I was not shopping very much because of how tired and unwell I felt most days due to the drugs. I was also not sure if I should invest in any clothes since at the time I was pretty skinny and not sure if I would need to bother in stocking up on items that may never be worn.
I opened up the book and of course was mesmerized by the new spring collection which contained silky shirts, fun patterns, and outlandish jeweled necklaces. I had to keep myself from drooling over all of the items and before I picked up my phone and purchased the entire spring collection (not really but I have to wonder if most females feel this way?) I came upon the swimsuit section. Oh no. I forgot about bathing suits. My drawers were filled with bikinis, very cute 40s style one pieces, and tankinis from after having my son to hide the baby fat. I was a beach girl. I supported the local stores mostly, drive down to the local shops and pick out bottoms that fit my bottom and tops that handled my well...top.  The fun of it was the bathing suits were not a set...one could mix and match with different designers etc. It was fun and I normally always found a perfect suit that fit. Except for now. I did not have the top anymore that I was so used to. The mastectomy job was still very real and no reconstruction was in sight because of radiation in the summer. Also, even after radiation I could not wear low cut tops. Another thing to mention, for women who have radiation the process of reconstruction is a lot more difficult than putting in implants. It is a process. One that many opt out of. The radiated skin has to heal which takes about six months and then if the women decides on surgery it is an option of removing muscle or tissue from the tummy or back to build up a breast. The operation can last up to 8 hours with a six night stay in the hospital, this is not even a promise that the surgery will work. It is another hurdle however in the meantime, I flipped through what JCrew had to offer me...nothing. The swimsuits needed to be cut a bit different in order for me to wear them and not feel exposed or scare everyone off the beach around me. So, I started looking at the suits that I wanted and figuring out ways I could make them mine. I cut out the ones that I really felt had potential and saved them.  I bring you back to today and I still do this for keeping up with trends. I do not copy anyone or try to recreate what was already made, instead these suits inspire me. In fashion, I have found that designers use an inspiration piece before they start a collection. It can be anything, a beautiful sunset to a piece of trash on the ground. The designers then follow up with trinkets and pictures that may coordinate with this inspiration. The inspiration and the items are then placed on a board and the designer can then figure out what the collection may entail while looking at fabrics and other items needed to create a line of clothing. This is not just for bathing suits too, this can be for people creating a men's line or women's wear. It is quite fascinating to read about the top upper crust designers and to hear what inspired them for their fall or spring collections. I have heard buildings are the most inspiring while creating a line of clothes. I have heard the seashores of different beach getaways or just a person can be an inspiration. For example, the late Alexander McQueen had a woman as his inspiration. If you wonder who she is watch Ladies of London on Bravo and she is on the show. It is, again, quite fascinating. The creation of a line is very fun and creative.
I have also been struggling with the fact that this project could very well fall on the category of hobby right now. My significant other made a point to say that until this makes some sort of financial impact consider it a hobby. He is not normally this negative, he is only being realistic. I felt pretty down about the fact that this project takes so much time and being a mother makes it even more so of a hobby at times. My main goal is to take care of my family and in the extra moments to sew, read up on DE (Design Entrepreneur) or sketch. My hope is that as my son grows this idea will grow too. Then by the time he is in school full time, not needing me to tend to his every need, I will have more time to contend with the life of a DE. I did not feel alone at all while watching a TV show last night. I do like to watch Real Housewives, as my husband calls it Screaming Women, and the new season has a lady who is a mom and she is creating a swimwear line. The episode last night was about how she felt pretty frustrated with starting her line and taking care of her family plus wanting another child. Her husband has the same mentality as mine too, family first. As I watched her send the family off to the park and encourage ice cream as a treat, she then dashed up to her office space which looks a lot like mine, I could understand her situation and felt more at peace. We as women are told to get a career and then also hold true to our regular duties of wife and mother. It can be quite a complex position. However, God granted us with the gift of multi tasking so it can be done! Just in small doses. So I dedicate this blog to the multi tasker!