Tuesday, December 19, 2017

Cancer...You are a pain in my neck!!!

We were touring London this summer when I would accidentally feel a lump in my neck. At first it did not hit me that the cancer was indeed growing again. It was almost normal. Yikes...normal to feel cancer? Then a few minutes later I realized that yes the cancer was already growing back. There will not be a four year interval before facing a possible recurrence like last time. It was back and I would be facing more questions on treatment options.
So what does one do while they are on a wonderful summer vacation with their family and facing such a dilemma? Nothing! I knew that once we landed in San Diego a PET CT Scan was already scheduled for follow up. That is all that can be done. So why let cancer win and ruin my first time ever traveling to London? 
I did not tell anyone either, as I did not want to see the looks of concern or discuss what the plan would be. I really enjoyed being in a moment where nothing was wrong, or at least seemed wrong. It was how things should be. The children were playing happily, the adults we were enjoying outings at night for dinners and taking tours of the castles and churches with so much history. It was a happy time that I did not want cancer to take over.  
At last our trip ended and we returned home to San Diego. My son went on to different day camps and enjoyed himself, my husband returned to work. I however, sat at my desk and had no desire to work on my line. I was tired. I knew the fight was going to continue with my cancer treatments so the swimwear would have to wait for now. My mind was in a fog as I drove down to have my PET CT Scan. I left there knowing it was not going to be clear, yet I still did not tell my husband. I wanted these moments to be mine and mine alone. I did not want to the worry or the discussions quite yet. It was such a nice summer with traveling to Italy, playing in the waters of the Mediterranean, enjoying delicious food, then traveling to London to visit family and see the sites. The summer continued to be nice as my son did enjoy himself at camp and I could have some alone time and get 'mom' stuff done. 
Then the results came in from my scan. My husband and I received the call from my doctor and looked at the images. A lymph node was showing up in my neck and that was it. No where else in my body. My husband looked puzzled and asked me, "Can you feel that?" I said, "Yes I have known about it for awhile now." He looked at me surprised. Because normally the moment I feel something abnormal I always show him. I explained, " I wanted to enjoy my summer and I knew we were going to have this scan anyhow." He smiled and gave me a hug, I think he felt things changing on how we were going to handle this cancer situation. We now are living with a  chronic condition, one that will never go away. So why race around trying to be rid of something that will never truly go away? Enjoy our lives and be happy with what we have and that we still have each other is how I now see this. 
I went to see my doctor and the new plan was an oral treatment and I went in every three weeks for IV treatments of Avastin. I grew quite fatigued with the oral treatment yet I was not going to lose my hair which I was quite happy about. I did not want to lose my hair again. It was important to me. 
I had a follow up PET/CT Scan in October to see if the cancer was shrinking from the new meds. Unfortunately, my doctor called and said there was progression more lymph nodes were lighting up and the resolution was much brighter than before. I was to go and see him as soon as I could to rethink the medicine or strategy on how to stop the growing. 
The strategy? My doctor said instead of putting me through chemotherapy again why not treat the cancer as a local issue and  use radiation as a therapy instead. More tolerable and it may be the answer. I was stunned to hear no other medicines. I would walk out of his office without a new prescription. No IV treatments this time around. Let's give you a break, I kept hearing the words in my mind. At first I was so stunned about it that it did not feel natural to not be on any medicine. I have been on some sort of cocktail for six years.  But this is not because I am running out of options necessarily, it is because they want to reserve the meds that are left and try to give me a break as the cancer is not visible anywhere else in my system. 
I walked out of his office very pleased. I could feel like myself for once!  
Now fast forward to December, I began radiation about three weeks ago to my upper right side of my neck. It is starting to become pink but we are noticing the lump is now shrinking. I have a few more weeks to go, total amount is seven weeks. I will be quite red by then but as long as it kills the abnormal cells that is all that matters. 
How long will this last? What is the next option? What will I do if it returns? One day at time is my motto and for right now I am feeling good and the cancer is shrinking. The pain from the lump pushing on nerves into my neck and jaw has subsided. Will the cancer come back? Yes most defiantly but for now we have a small victory. Cancer is a pain in the neck, yes, but that is all for now and it can be tolerated. 

Saturday, November 12, 2016

My Grandma Maikish, brother Jacob, and myself 
Sweet November...I always loved November when I was a child. I remember driving over to my grandparents home and walking in to a commotion of my grandmother cooking and my grandfather putting wood on the fire. The table would be set with the best china and silverware. There were little dishes with olives, celery with cheese spread, sweet pickles, and rolls on the table. The delicious aromas of turkey, mashed potatoes, and steamed broccoli wafted into the living room where I would play with my cousins. We would sit down and say a prayer, usually led by my dad and then the food passing would be begin.  Afterwards, the dishes would be cleared away, normally we could not eat dessert yet my grandmother would have made jello parfaits, which looked like sundaes. I never could pass on these they were delicious, whipped cream, strawberry jello and bananas.
There were also the Thanksgivings we would spend dinner with my other grandparents and my dad's side of the family. The table was always boisterous since the bunch were from the East Coast, including my late grandparents, my great uncle and my great grandmother. I enjoyed spending holidays with them too because of how comical they were and the food was always good. My great grandmother would always have a mince meat pie mixed in with the other pies and only one slice would be taken as most of us passed. My grandfather would sometimes host the dinner at a country club since he was an avid golfer and it always seemed so nice.
I come from a strong family on both sides. What made us all strong is from our family history/upbringing by the past generations. The military played a part in the upbringing too with both my grandfathers having served in the US Navy/Marine Corp. There was a certain respect for our elders and us children we were very much shown love. I believe also the foundation of faith in our family has helped all of us in one way or another. My grandmother, pictured above who is my dad's mom, had a strong faith and that laid the foundation for my own.
That faith and those many joyous occasions with the family would play a huge part in my fight with breast cancer. It all began five years ago. I was diagnosed with breast cancer a week before Thanksgiving. The surgery would take place the week of my favorite holiday. It was a dark ominous month for me. I did not want to see anyone, I wanted to take care of my son and as I fed him in his high chair I was somber. My faith, I remember reminding myself as I sat next to his crib each night,  my faith will get me through this.
November of 2012 approached, I felt the clock ticking as I got ready to celebrate one year out from my cancer diagnosis. I would not make it past the finish line. I would be diagnosed with a recurrence.
The cancer was not going to be removed and I was stunned into silence.  I was again reminded of my faith and thankful that the warm feeling which entered me as I prayed calmed me down, gave me guidance, and helped me put one foot in front of the other.
As the year progressed, the cancer subsided, my doctors assured me as time passed cancer would not be the first thing I think about each day.
Time was the answer. I also knew too that faith was key.
November of 2013 I would have surgery to remove my ovaries as the injections to stop my ovaries from working were giving me major side effects. I was warned of this and felt removing my ovaries would be a better choice since I knew having children was out of the question when hormones were the fuel for the cancer.
I was very sad after waking up from my surgery knowing my organs that made me a woman were gone. We had hoped to have more children so Patrick would have a sibling. I had dreamed of a family of four which felt more well rounded then just one child.  Yet, this was not going to come to pass. I had to put my faith in God for understanding. It was a very emotional moment in time for me.  Yet, this time I was able to enjoy Thanksgiving as the surgery was very minor compared to what I had endured the years before. It was time to live again.
Now it is November of 2016. I have been back in chemo for the past three months or so from another recurrence. This time it was discovered in August and it did not ruin my favorite holiday. In fact, I was told yesterday from my doctor the scan I received this past week is NED. I looked at my husband and said, "Isn't it nice to be going into the holiday season with this new hope, thankfulness?" He agreed and we hugged with tears in our eyes.

My Grandma Allison (mom's side) and myself
My Grandpa Allison (mom's dad) & myself

My Great Grandma Willie & brother Jacob & myself
I cannot say this is the end of my cancer journey, most doctors would warn of the high risk for the cancer to come again. Yet, we are allowed small victories in the war as each battle is won. I don't know how much time I have before we are faced again with another uncertainty but as a friend told me, "Live your life just like you have these past couple months."  It is important to keep your faith, send your troubles to God, and put one foot in front of the other.  I believe without those years with my family gatherings, getting to know and love the people in my life who had faced uncertainty before me, and having God as my foundation  then my story would be much different. I credit my heritage and my God and this Thanksgiving there is much to be happy and thankful for...Happy Thanksgiving to all of you and I do hope you go into this holiday season with a sense of faith and thankfulness.

Friday, November 4, 2016

The month of pink is over...no more pink washing. The companies who are offering to give to breast cancer research are now concentrating their efforts on the holidays. The NFL players who wore pink on the field are now back in their regular uniforms, which I think is a really great way to bring about awareness. The women who are contending with breast cancer are now cast back into the shadows until next year...however some of them will not be there.
Yes, I am thankful for all the charities, including Susan G. Komen because if it were not for these charities I shudder to think what my fate would have been five years ago this month. However....in walks November. An extension of breast cancer awareness for me and my family. This is the month that I was diagnosed not only once but twice with breast cancer.
I was originally diagnosed in November 2011 with Stage III Interductal Carcinoma, highly aggressive. The 2 cm tumor in my breast had reached 9 out of 15 lymph nodes resulting in multiple months of treatment. I would have my breast removed the week of Thanksgiving and be in the worst pain I had ever felt.
A year later in November around the same time I would be re diagnosed with a regional recurrence in my neck. I felt pain and swelling in my neck and found a large lump in my neck while out to dinner one evening. The results would come back the same cancer as before yet changed to PR positive.
I would have to endure three to four months of treatment, including neck radiation which I needed an Ativan pill for each day so I would not have a panic attack. I had to wear a mask and be locked into the table so the beam would not miss the areas intended for treatment.
A PET Scan would find the cancer had vanished and we were joyous in this news. Of course I was not that naive I knew that the cancer was only sleeping.
It is November again and here I am with no hair on my head and lethargic. I am undergoing chemo again with a PET Scan scheduled for next week to see if the treatments are working. I was re diagnosed this time in August with another regional recurrence yet maybe a spot or two in my lungs, too small to tell what they are. I am tired. I am frustrated. I am thankful for the past four years of freedom from treatment. Yet what now? The pink month is over. Yet mine still continues. The awareness grows in my body, is injected into my arm each week. The awareness comes from the bruises on my arm from the needles, from my son asking me to wear a cap so he does not have to explain why his mommy has no hair to his friends. My awareness ticks on yet will my life end in a pink river of tears? Will I see my son at his high school graduation smiling and waving at me from the podium as I cry tears of joy and victory? Will I get to meet his future wife and visit their home during the holidays? My awareness campaign does not end for the holidays..it continues as I go to have a mammogram and wait for the phone to ring or receive a letter in the mail, the letter being the better of the two. The countless prayers I mummer under my breath to God pleading for more time. The pink ribbon is only a piece of fabric held onto our clothing by a metal pin that can be taken off and put away for a year. Yet I put a wig on my head, a prosthetic in my lace bra, and take my antidepressant so my mood does not create a monster. My awareness is hearing about women my age or younger dying from this disease. I hear news each day of a 30 something year old mother and wife who had died from the disease. The pictures of the women, bald or wearing a cap holding their young children with a twinkle in their eyes, now gone. Will the companies who are taking down their signs with the pink ribbon in the corner think of them? Will they think of their families as they start to replace these signs with red and green ribbons? A passing thought truly, an epidemic has taken hold of our young women. These young children who are witnessing the strength and foundation to their youth disappear will be effected more than these companies know.  We need more. We need people to keep their ribbons up all year long..have a product dedicated solely to the cause as a reminder each day that women are dying. This is not some movie where the heroine 'beats' cancer in a battle and walks off into the sunset, many times the cancer returns and the war is lost. My November is reminder of the years ticking on and I think of each battle I wage when this war will be over. My awareness continues through December as we decorate our tree and wrap presents. My pink ribbon is my scar on my right side, I can never take it off or set it aside. It is permanent. I ask for everyone to please help me and my fellow survivors who are battling this disease each day to put forth an effort and make a donation to METAvivor. It is an organization that gives the money received to research for metastatic breast cancer. We can live our lives in a chronic state. We just need more drugs and options. I ask for you to please not put aside your pink ribbons and please keep them on each day as I have to wear this scar on my body to remind yourselves of the fight women are going through each day.
Please be sure to subscribe to my blog so you can be aware of what is happening in my life and the life of others. Also please go to www.METAvivor.org to donate now or see what you can do to help women like myself. Please save the women....

Thursday, October 13, 2016

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.

Tuesday, July 19, 2016

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.  

Thursday, June 23, 2016

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.