O que aconteceu com a minha boneca?

Minha familia em  1975

Em 1974 os meus pais, como muitas famílias dos Açores, pediram visto para imigrar para os Estados Unidos ou Canadá.  A família da mãe morava no Canadá, a família do pai morava na América.  A imigração era o desejo de muitas famílias como uma oportunidade de melhorar a vida de suas famílias.  O primeiro visto aceito foi para os Estados Unidos da América.

 Meus pais venderam sua casa para conseguir o dinheiro que custaria para nos trazer para esta terra melhor.  Mamãe comprou um material e fez roupas novas para nós.  Eles compraram as passagens de avião e embalaram duas malas.  Isso é tudo que eles levariam com eles, exceto aquelas roupas novas e lindas e sapatos novos que usaríamos para ficarmos bem quando chegássemos na América.

 No dia 31 de Janeiro de 1975 veio o táxi buscar-nos para nos levar ao aeroporto de Ponta Delgada onde embarcaríamos num avião e deixaríamos tudo o que os meus pais sabiam.  Eles estavam nos levando para a terra das oportunidades e de uma vida melhor.

 Papai tinha 39 anos e a mãe 34.  Eles empacotaram seus 7 filhos, Cidalia 14, Luis 13, Olivia 8, Joe 6, Eduardo 4, Nelia 3 e eu tinha 9 anos.  Que jogada corajosa é pegar e mover sua família com duas malas e as roupas do corpo.  A família do meu pai estava esperando por nós e meu tio nos pegava no aeroporto e nos levava para a casa da minha tia Gloriana.  Ela e o marido tinham um apartamento pronto para nós em uma casa que possuíam, mas a mãe e o pai teriam que encontrar trabalho imediatamente para pagar o aluguel e sustentar a família.  Eles não tinham habilidades e não falavam o idioma.  É preciso coragem e coragem para fazer essa mudança, mas principalmente o desejo de dar uma vida melhor à sua família.

Naquele Natal, Natal de 1974, pudemos ver São Nicolau pela primeira vez num evento onde o meu pai trabalhava para a companhia de eletricidade. Foi tão emocionante, estávamos todos vestidos com as nossas roupas de domingo para irmos ter com São Nicolau que nos ia dar o nosso presente de Natal. Antes desse ano, sabíamos de São Nicolau, mas nunca o tínhamos conhecido. Todos os anos, na véspera de Natal, decoramos a chaminé e colocamos uma meia ou um sapato na esperança de que São Nicolau nos deixasse um presente enquanto estávamos na missa da meia-noite. 

A véspera de Natal foi uma grande celebração enquanto festejávamos o nascimento de Jesus. Depois de decorar, a mãe cozinhava e depois vestivamo-nos e íamos à igreja para a missa da meia-noite. O pai teria sempre de ir para casa. Quando voltávamos da missa da meia-noite, encontrávamos o nosso presente de São Nicolau naquela meia. Nosso presente pode ser um pedaço de fruta, pastilha elástica, um apito, brinquedo pequeno, ou um balão; Mas naquele ano conheci São Nicolau na festa e recebi a minha primeira boneca a sério. Era bonita. Carreguei aquela boneca comigo para a minha viagem à América.

Não conseguiria viajar com a minha boneca quando estivéssemos no avião. A minha irmã Nelia tinha 3 anos, por isso não queria estar no avião, chorou que queria ir para casa, mas calava-se se pudesse brincar com a minha boneca. Por isso, ordenaram-me que desse à minha irmã mais nova a minha boneca para que ela se acalmasse. Ela tinha a sua própria boneca, todos nós tínhamos uma boneca nova, mas ela queria a minha. 

Só quando estávamos a passar pelo aeroporto de Logan. Neste lugar estranho, assustador e excitante, com muita gente e luzes que pedi à minha irmã para me devolver a minha boneca. Ela deu-me a minha boneca, mas a boneca não tinha cabeça. Ela arrancou a cabeça e deixou parte da minha linda boneca no avião para nunca mais ser vista. Amei a minha linda irmã mais nova do que alguma vez poderia imaginar e ainda bem que a amei, porque nunca me esqueci que ela deu a cabeça à minha boneca.

Era um tempo de excitação, medo, lágrimas e felicidade. Os meus pais sacrificaram-se tanto para nos trazerem para a América e darem-nos uma vida melhor. Hoje, sou uma enfermeira de sucesso, e todos os meus irmãos têm sucesso. Os meus pais tornaram isto possível para nós. Sacrificaram-se para nos dar a nós e às nossas famílias uma vida muito melhor do que teríamos tido na pequena aldeia da Ilha de São Miguel. É um lugar bonito que adoro visitar, mas ainda hoje há muita pobreza nessa bela ilha e o acesso aos cuidados de saúde não é o que é na América. Agradeço a vida que os meus pais tornaram possível ao fazerem esse sacrifício e até pelo medo deles de saberem que têm a coragem de nos levar a todos no avião para uma terra desconhecida. Lembrar-me-ei sempre da minha primeira boneca a sério, mesmo que a tenha por pouco tempo. Perdoei a minha irmã por deixar as minhas bonecas num avião, mas vou provocá-la para sempre e ela ainda me deve uma boneca nova.

Escrito por: Idalina Colburn

no dia 4 de Fevereiro, 2021

What Happened to my doll?

My Family 1975 , first family picture ever taken 

    In 1974 my parents, like many families of the Azores applied for visa to immigrate to either the United States or Canada. Mom's family lived in Canada, dad's family lived in America. Immigrating was the desire of many families as an opportunity to improve the life of their families. The first visa to be accepted was to The United States of America.

My parents sold their house to come up with the money that it would cost to bring us to this better land. Mom bought some material and made us all a new outfits. They purchased the plane tickets and packed two suit cases. This is all they would take with them other than those pretty new outfits and new shoes that we would wear so that we could look nice when we arrived in America.

On January 31, 1975 the taxi came to pick us up to take us to the airport in Ponta Delgada where we would board an airplane and leave everything my parents knew. They were taking us to the land of opportunity and a better life. Dad was 39 years old, mom 34 . They packed up their 7 children, Cidalia 14, Luis 13, Olivia 8, Joe 6, Eduardo 4, Nelia 3, and I was 9 years old. What a brave move to pick up and move your family with two suitcases and the clothes on your back. My fathers family were waiting for us and my uncle would pick us up at the airport and take us to my Aunt Gloriana's home. She and her husband had an apartment ready for us in a home that they owned, but mom and dad would have to find work right away to pay rent and support their family. They had no skills and didn't speak the language. It takes guts and courage to make this move, but mostly it took the desire to give your family a better life.

That Christmas, Christmas of 1974, we were able to see Saint Nicholas for the first time at an event where my father worked for the power company. It was so exciting, we were all dressed up in our Sunday clothes to go meet Saint Nicholas who was going to give us our Christmas gift. Prior to that year, we knew about Saint Nicholas, but we had never met him. Every year on Christmas eve we would decorate the chimney and put out a sock or shoe in hopes that St. Nicholas would leave us a gift while we were at midnight mass.

Christmas eve was a big celebration as we celebrated the birth of Jesus. After decorating, mom would cook and then we would all dress and walk to church for midnight mass. Dad would always have to run home. When we came home from midnight mass, we would find our gift from saint Nicholas in that sock. Our gift might be a piece of fruit , gum, a whistle, small toy, or a balloon; but that year I got to meet saint Nicholas at that party and I got my very first real doll. She was beautiful. I carried that doll with me for my journey to America.

I would not be able to travel with my doll once we were on the airplane. You see, my sister Nelia was 3 years old, so she did not want to be on the airplane, she cried that she wanted to go home, but she would quiet down if she could play with my doll. So I was ordered to give my little sister my doll to play with so that she would settle down. She had her own doll, we all got a new doll, but she wanted mine.

Nelia, age 3

It wasn't until we were walking through Logan airport; in this strange, scary, and big exciting place with lots of people and lights that I asked my sister to give me back my doll. She gave me my doll, but the doll did not have a head. She had pulled her head off and left part of my beautiful doll on the airplane never to be seen again. I Loved my beautiful baby sister more than I could ever imagine and its a good thing I loved her, because I have never forgotten that she be-headed my doll.

It was a time of excitement, fear, tears, and happiness. My parents sacrificed so much to bring us to America and give us a better life. Today, I am a successful nurse, and all my siblings are successful. My parents made this all possible for us. They sacrificed to give us and our families future generation a much better life than we would have had in the small village in the Island of Sao Miguel. It is a beautiful place that I love to visit, but even today there is still a lot of poverty on that beautiful Island and health care access is not what it is in America. I am thankful for the life my parents made possible by making that sacrifice and even through their fear of the unknows having the guts to get us all on the airplane to a land unknown. I will always remember my first real doll, even if I only had her for a short time. I forgave my sister for leaving my dolls head on an airplane, but I will tease her about it forever and she still owes me a new doll.

"A Poor Girl in a Rich Girl's Dress"

A poor Girl in a Rich Girls dress
Mom and dad on their wedding day
Aunt Lucia as the flower girl
November 14, 1959

    Living in the United States today, its hard to imagine what life was like for young couples living in the small Island of Sao Miguel, Azores 60 plus years ago. I had a very old , cracked,  and faded photo from my parents wedding day. This photo is the only one they had and has been scanned and copied. 

In that day poor people of the island did not have cameras or video to document their special events; but moms godfather's wife had lived in America, so they had a camera and he snapped a picture of the couple as they were coming out of the church. Three years later he brought that picture to mom after he had a visit to America where he had it developed. Mom treasured this photo; but since dad worked away from home to the other islands for weeks at a time, he folded this only photo they owned and carried it in his wallet. The photo obviously faded and cracked over time.

I sent a friend who does photo restoration my faded copy to try to preserve this memory. This led to conversations with my mother who is now 79 years old and married to this same man for 61 years. I asked her to describe what her dress looked like so that the photo restorer could assure that she had the dress restored correctly 

    Here is the story behind this dress. A story that is not unlike many from that time. 

    Mom was 18 years old, dad, 23. When asked about the dress, mom vividly describes it and is excited to share the whole story. "It was so beautiful" she explains with excitement. She explains that she felt like a princess; "A poor girl in a rich girls dress".  It was a beautiful satin with  lace roses that were just slightly darker. It had long sleeves and covered her neck as it was not appropriate to have any cleavage or neck showing. She wore a vail that covered her face. After the priest married them and said that he could kiss his bride, mom explains, a little shy; "your father lifted the vail and kissed me on my forehead. 

    In that day when a girl was to marry she would ask a couple to be her godparents for the sacrament of marriage. Her mother suggested that she ask her baptism godfather since his wife had come from America and they might be able to afford the wedding band or dress that often was gifted by the godparents A couple of weeks after she asked the couple to be her godparents for marriage, his wife sent for her and showed her the most beautiful material . She asked her if she liked it for her wedding dress. The couple had  hired a professional seamstress who would make her dress.  Dad wore a simple, but elegant black suit that he purchased himself in the city. It cost him a months salary, but he looked so elegant in his suit. "It was like we were rich" she explains. They could not afford wedding bands. Mom's was borrowed and dad did not have a wedding band.  Everyone talked about her beautiful dress for a long time. Mom was so excited to tell me the story of their wedding and courtship. 

   In that time girls were to show respect for their family and there was no public show of affection. In fact, the first time that I remember seeing a couple kiss on the lips was on television when I was 9 years old after we came to the America.. I remember asking mom why she and dad never kissed liked that. 

    Dating was not what we understand as dating. Boys would date a girl by talking to her through an open window or veranda  in her home. The girl would be inside the house, the boy on the outside. Mom explains , "there was a little kiss snuck in now and then" at that window or after church.  This meeting up through the window would lead to falling in love. Mom was young and she was "crippled". She had polio when she was 5 years old. Polio residuals led to one leg shorter than the other and a foot contracture, so she walked with a limp. A girl like that was not perfect and no man would want a crippled girl. Dad knew that she had this disability but he liked her anyway. After a few months of dating , dad  decided that he was going to ask her to marry,  But remember, she was not perfect, she was the crippled girl. This caused a problem. His parents did not approve.  He could not marry a crippled girl, What if she could not cook and clean for him or have children for him.  

    When dad insisted that he was going to marry this women, his parents threw him out of the house. He worked in the city with moms brothers all week, so her mother and father allowed him to sleep in the attic with her brothers on the weekends. Her  mother explained that they must marry right away as it would be shameful; and what would people say ?  Mom was not sure she wanted to marry him, after all she didn't know him very well yet, and he said he loved  her, but did he really? why would he want a crippled woman? She wasn't sure she even loved him. Mom goes on to tell me that even though his parents did not originally approve, they grew to love her and her mother in law, my grandmother,  was a saint who was so good to her and helped her so much. 

    She was known as crippled, but this is a women that with a foot contracture, bearing weight only on her toes,  still managed to walk everywhere, take care of her family, carry and birth 9 children at home with no real medical care, work long hours in the mills after coming to America and never resting or complaining, She lived through so many heart breaks including losing two infants both in her arms, two miscarriages, an emergency hysterectomy, and a hard life without the conveniences that we have today.  Life was hard, but she never gave up and worked hard to raise her family. Today she suffers with some health issues, but she remains the strongest woman I have ever known and I am thankful for her strength and determination. 

    This poor girl in the rich dress deserved that beautiful dress. This young couple are now rich in family and love. Through all the hard work, tears, sweat, good times and bad times, they created a huge beautiful family who are very close. They just celebrated 61 years of marriage. 

Mom and dad with the family they created at their 60th wedding anniversary 
November 14, 2019

Uma pobre rapariga com vestido de uma rapariga rica.

Ve

     Morando nos Estados Unidos hoje, é difícil imaginar como era a vida para os jovens casais que viviam na pequena Ilha de São Miguel, Açores, há mais de 60 anos. Eu tinha uma foto muito velha, rachada e desbotada do dia do casamento dos meus pais. Esta foto é a única que eles tinham e foi digitalizada e copiada.           Naquele dia, os pobres da ilha não tinham câmeras ou vídeo para documentar seus eventos especiais; mas a esposa do padrinho   da mãe tinha vivido na América, então eles tinham uma câmera e ele tirou uma foto do casal quando eles estavam saindo da igreja. Três anos depois, ele trouxe aquela foto para a mãe, depois de uma visita à América, onde a revelou. Mamãe valorizou essa foto; mas como o pai trabalhava fora de casa para as outras ilhas por semanas a fio, ele dobrou a única foto que eles possuíam e carregou-a na carteira. A foto obviamente desbotou e rachou com o tempo.

  Enviei a um amigo que faz restauração de fotos minha cópia desbotada para tentar preservar essa memória. Isso levou a conversas com minha mãe, que agora tem 79 anos e é casada com o mesmo homem há 61 anos. Pedi a ela que descrevesse como era seu vestido para que o restaurador fotográfico pudesse garantir que ela o restaurou corretamente. 

  Aqui está a história por trás deste vestido. Uma história que não é diferente de muitas daquela época. 

   Minha mãe tinha 18 anos e meu pai, 23. Quando questionada sobre o vestido, a mãe o descreveu vividamente e ficou animada para contar toda a história. “Foi tão lindo”, ela explica com entusiasmo. Ela explica que se sentiu como uma princesa; "Uma pobre garota com um vestido de garota rica". Era um lindo cetim com rosas de renda ligeiramente mais escuras. Tinha mangas compridas e cobria o pescoço, pois não era apropriado ter qualquer decote ou decote à mostra. Ela usava um véu que cobria seu rosto. Depois que o padre os casou e disse que podia beijar a noiva, explica a mãe, meio tímida; "seu pai ergueu o véu e beijou-me na testa. 

   Naquele dia, quando uma menina estava para se casar, ela pedia a um casal que fosse seus padrinhos para o sacramento do casamento. Sua mãe sugeriu que ela pedisse ao padrinho do batismo, já que sua esposa tinha vindo da América e eles poderiam pagar a aliança de casamento ou vestido que muitas vezes era oferecido pelos padrinhos. Algumas semanas depois de ela ter pedido ao casal para serem seus padrinhos no casamento , sua esposa mandou chamá-la e mostrou-lhe o mais belo material. Ela perguntou se ela gostava de seu vestido de noiva. O casal contratou uma costureira profissional que faria seu vestido. Papai usava um terno preto simples, mas elegante, que ele mesmo comprou na cidade. Custou-lhe um mês de salário, mas ele parecia tão elegante em seu terno. “É como se fôssemos ricos”, explica ela. Eles não podiam pagar as alianças de casamento. O da mamãe foi emprestado e o papai não tinha aliança. Todos falaram muito sobre seu lindo vestido. 

    Mamãe estava tão animada para me contar a história de seu casamento e namoro. Naquela época, as meninas deviam mostrar respeito por sua família e não havia nenhuma demonstração pública de afeto. Na verdade, a primeira vez que me lembro de ver um casal se beijando foi na televisão quando eu tinha 9 anos, depois que viemos para a América. Lembro-me de perguntar a mamãe por que ela e papai nunca se beijaram assim. Namoro não era o que entendemos como namoro. Os meninos namoravam uma garota conversando com ela através de uma janela aberta ou varanda de sua casa. A menina estaria dentro de casa, o menino do lado de fora. Minha mãe explica: "havia um beijinho escondido de vez em quando" naquela janela ou depois da igreja. Esse encontro pela janela levaria ao amor. Mamãe era jovem e ela era "aleijada". Ela teve poliomielite quando tinha 5 anos. Resíduos de poliomielite resultaram em uma perna mais curta que a outra e uma contratura no pé, então ela mancou. Uma garota como aquela não era perfeita e nenhum homem iria querer uma garota aleijada. Papai sabia que ela tinha essa deficiência, mas gostava dela mesmo assim. Depois de alguns meses de namoro, papai decidiu que iria pedir a ela em casamento, mas lembre-se, ela não era perfeita, ela era a garota aleijada. Isso causou um problema. Seus pais não aprovaram. Ele não poderia se casar com uma garota aleijada, E se ela não pudesse cozinhar e limpar para ele ou ter filhos para ele. Quando o pai insistiu que ele iria se casar com essa mulher, seus pais o expulsaram de casa. Ele trabalhou na cidade com os irmãos mães durante toda a semana, então a mãe e o pai dela permitiam que ele dormisse no sótão com os irmãos nos fins de semana. Sua mãe explicou que eles deveriam se casar imediatamente, pois seria uma vergonha; e o que as pessoas diriam? Mamãe não tinha certeza se queria se casar com ele, afinal ela ainda não o conhecia muito bem, e ele disse que a amava, mas será que é verdade? por que ele iria querer uma mulher aleijada? Ela não tinha certeza se o amava. Mamãe passa a me dizer que embora seus pais não aprovassem originalmente, eles passaram a amá-la e sua sogra, minha avó, era uma santa que era tão boa com ela e o ajudava 

   Ela era conhecida como aleijada, mas esta é uma mulher que com uma contratura no pé, suportando peso apenas nos dedos dos pés, ainda conseguia andar por toda parte, cuidar da família, carregar e dar à luz 9 filhos em casa sem nenhum atendimento médico real, trabalho longas horas nas fábricas depois de vir para a América e nunca descansando ou reclamando, ela passou por tantos sofrimentos, incluindo a perda de dois bebês em seus braços, dois abortos espontâneos, uma histerectomia de emergência e uma vida difícil sem as conveniências que temos hoje. A vida era difícil, mas ela nunca desistiu e trabalhou muito para criar sua família.

   Hoje ela sofre de alguns problemas de saúde, mas continua a ser a mulher mais forte que já conheci e sou grata por sua força e determinação. Esta pobre garota com um vestido rico merecia aquele lindo vestido. Este jovem casal agora é rico em família e amor. Através de todo o trabalho duro, lágrimas, suor, bons e maus momentos, eles criaram uma enorme e linda família que está muito próxima. Eles acabaram de celebrar 61 anos de casamento.

A moment into the past shared with my own grandchildren: Life as a child in the Azores

Last year I had the opportunity to take my two oldest grandchildren to the street where I lived when I was a little girl. A street on a small island off the coast of Portugal, the village is Feteiras in Sao Miguel, Azores.  I explained to the kids that we all lived in that little house. The street is made up of houses made of cement and brick with a big field at the bottom of the hill. the field leads to the ocean.  Zachary wanted to know where did I play? Well, how to explain to children who have so many toys, video games, tablets, internet, televisions in every room that we did not have any of those things. How do you explain that we made our own toys out of sticks, rocks, dirt and that we played hide and seek and chased each other in that field?  We did not have a car, a bicycle, a skate board., or a scooter.  We walked everywhere including school. There was no school bus to take us to school. We walked to church every Sunday as a family. For family fun and fun with our neighbors the moms came together on the front step with a radio powered by batteries and listened to shows on the radio. I can't remember what the shows were, I imagine they were some kind of novella and sometimes it was music. The children played together in the street while the parents listened to their novellas. I do remember that often there were chickens running around too and we normally were barefoot as shoes were reserved for school and church. The babies were usually in the mothers arms and the men were often away working or if they were home, they were having their home made wine or moonshine. There are some memories of these times ending badly when dad or one of the other men would drink to much and treat their wives badly. That was pretty common. Women were not treated very well by their husbands. It took many years  (weigh into adult hood),  before I was able to understand that this was cultural and socioeconomic. It was a hard life for families. 

I did get to go in that little house on one of my visits a few years ago. The current owner invited me with my niece and daughter in law to come in to the house. There were some updates, but that small attic upstairs where we all slept was as I remembered, except that it seemed so much smaller. 

It is a small house made of brick and cement. the front door opens into a long hallway with a tile floor, but in my earliest memory, the floor was cement. There is a small room on the right and another small room on the left. The room on the left was a bedroom that my parents used occasionally, but it was reserved for when they had company from the US or Canada. Although they did sleep in that room when there was a new baby. I imagine to keep the baby from waking up the rest of the kids. There was a small crib in the room. Mom was pregnant every year, so imagine, there were other times that they slept in there instead of the small attic with all the children. The room  on the right was small and I remember all of us sitting in that room listening to the radio. There was no television and up until I was about 8, there was no electricity. The room was light  by a kerosene lamp. there was another open door area with a curtain that led to the two room attic where we all slept.  At the end of the hall was a door that led to a small kitchen. There was a stove and a table and chairs, To the left was a open chimney area with counters made of cement. Mom cooked in this open wood burning oven, mostly I remember her making bread. Then there was a door to a small back yard. There was no swing set or toys in that back yard. Every piece of yard was used for planting and chickens. There was a small clothes line and a basin with a scrub board where mom washed all the clothes including cloth diapers. They were not cloth diapers bought in the store, they were made by mom and my grandmother. There were usually two children in diapers at any given time, since mom had 9 babies by the time she was 31 years old. 

The memories came rushing back when I walked in this little tiny house. What a gift to have the opportunity to walk in there as an adult. I remembered it being so much bigger. Then, the gift of sharing a moment on the street and on that  field with my own grandchildren. Zachary was 9. The same age that I was when we left that little house in our best outfit and two suitcases for a family of 9 and took a taxi to the airport to move to the US. That was the dream. We were leaving for a better life. More to come about that life. 

Idalina (Linda) 

With Zach and Leah where I used to play
November 2019

With Zach and Leah in Front of my childhood home
November, 2019

No mutation

Liver lesion has been ablated and I have recovered. I was hoping that the genomic sequencing on the liver lesion would show a mutation that could be targeted by a new medication. Unfortunately, I did not have the mutation.  I will stay on Ibrance in the hope that it’s still working, although progression to my liver means that it was not doing enough, so I have now completed loading dose of faslodex injections and will now get them once a month.  We will  repeat my scans in a few months and keep fingers crossed that my bones continue to show improvement and that there any no new liver lesions or spread anywhere else. This is second line treatment in two years and there are still some good options for the future, so, MBC , I am living with you,  but you need to behave. I will continue to live my best life. 

I remain stronger than cancer 

Linda  (Idalina)

Saying goodbye to a patient pandemic style

Yesterday, I snuck onto one of the inpatient units to say goodbye to a patient and fellow breast cancer warrior . Hospitalization today is very different than it used to be because of covid 19 precautions. Patients have to make end of life decisions with family meetings held on zoom. This approach leaves out the important human touch of holding a persons hand and hugging them when they are forced to make the hardest decision of their lives. The decision to focus on comfort at the end of life instead of active treatment, The thing is that in most  cases, as  this case, the decision has already been made by your body that is no longer able to tolerate treatment. The difference is that now, the patient is left alone in that bed after the doctors and nurses walk out and the zoom meeting has ended. This is the part of the pandemic that many don't see or understand. 

Luckily I wear an employee badge and know how to make my way to the nursing unit. We are not really allowed to go see a friend in the hospital during the pandemic, but K has been my patient for the last 2 1/2 years. She is a beautiful 54 year old woman who until 2 1/2 years ago was living her normal life without concern for her health. She had a lump on her breast . She didn't think much of it until it started to cause some sores on her breast.  She actually had breast cancer that had spread to her skin and bones and eventually  spread to her liver. Sound familiar? Now, please, for those who love me and are reading this blog, don't panic and think that I'm writing this because I am dying. K's cancer was much more advanced than mine at diagnosis two years ago. The benefit of working as a breast cancer nurse is that I recognized my symptoms as abnormal a lot earlier. K is now in complete liver failure and waiting for  bed at the inpatient hospice unit. 

After a family meeting , on zoom.  I had the opportunity to go see her and hold her hand. I couldn't hug her, but holding her hand was the next best thing. I'm so lucky to have this opportunity to help her by allowing her to at least  see a familiar face , even with the face mask, goggles and gown she recognized me right away and was relieved to see someone she knew because even her oncologist was only able to participate in this discussion on zoom since she too is quarantined at home. My heart goes out to K and  and her family. Making the decision to change the focus to comfort care is hard enough when you have your family physically at your side, I cant imagine how much more difficult it is when the pandemic does not allow your family to physically be present. K is waiting for an open bed at the inpatient hospice center where her family will at least be able to have limited visitation. Tonight, I pray that K is comfortable and that a bed will become available at hospice for her soon. I did hear from her family that two family members, her son and sister,  were being allowed a 30 minute visit at the hospital today. Thank you lord for allowing her this opportunity to have them be able to get in today to hold her hand  and give her a hug, even if only 30 minutes. 

Saying goodbye to a dying patient has become even more difficult during the pandemic. 

K,,,and all those suffering alone in the hospital tonight, I pray for comfort, peace, and dignity. 

Linda (Idalina) 

I am and remain stronger than cancer 

Michelle: I will carry your purse with pride and remember your bravery.

Another Brave Warrior: I will carry my new purse with pride for the breast Cancer Warrior who owned it before me. 

 I recently was able to purchase this beautiful purse on ebay.  It belonged to a metastatic breast cancer warrior. I never met Michelle in person. I got to know her through a facebook group through Gloria Gemma Breast Cancer Foundation. This is a group of women all living with stage 4 metastatic Breast Cancer. It is a group  that no one wants to belong to, but those who belong are glad to have the support of others who understand what it is like to live with a terminal illness like this.  

I later learned that Michelle's paths crossed with others that I know. Its funny how you find these connections through social media. Through this beautiful young woman's posts and zoom chats through Gloria Gemma's straight truth meets, I was always so moved by this girls strength, beauty, smile, and courage. 

She stopped working after her diagnosis and did lots of fundraising in support of awareness for metastatic breast cancer. One of the organizations that she supported was Metavivor, an organization devoted to supporting those effected by metastatic breast cancer as well as focusing on research to find a cure. When I saw that her husband was selling all her beautiful handbags and wallets and donating the funds to Metavivor, I knew that I wanted to purchase one of her bags. It was great that the one I won the bid on was the one I loved the most. 

For many reasons, I will carry this purse with pride and will always remember how brave, and courageous this young women was. She was only 43 and left behind a little boy, but I know that she made a difference for her child, friends, family, and even those who never even met her in person. I watched in awe every time she posted about yet another challenge, progression, change in treatment, disappointment, excitement at any little progress and in the end her courage as she faced the end of the journey. Her husband then posted about her last days and her courage. I pray that I have many years before I get to the end of my journey, but when that time does come, I will remember Michelle and others before me who have been so strong. This young woman and so many others that I have had the pleasure of meeting show so much strength and dignity. Even in my line of work where I see so much strength, I still feel so motivated and thankful to meet these amazing people at a time where the courage and hope really shines through. 

Michelle...rest in peace, I will always remember your beautiful Portuguese smile.  

Idalina (Linda) 11/29/20

Learning to Dance in The Rain

 "Life Isn't about waiting for the storm to pass, it is about Learning to Dance in the Rain" 

I first heard this saying years ago from a young woman who was one of my leukemic bone marrow transplant patients. She was in her late 20's and had so much life to live, but she was dying from her cancer. She had every reason to hide under the blanket and get depressed, but she did NOT. She kept fighting until the last day and she was so strong. Even with every relapse, she stayed positive. I sat with her holding an ice pack to her nose as she bled from no platelets . I advocated to give her platelets to give her a few minutes without bleeding so that she could see the two young children (her boyfriends children, whom she had learned to love and who loved her).  Even in those last few days , she was positive and living life. She and so many other brave patients that I have been privileged to know have thought me to live my life by not waiting for the storm to pass, but to keep dancing in the rain. 

This year has been trying for all of us as we continue to navigate the storm known as covid. In addition to the covid pandemic, I have to navigate another storm again.  I must deal with a scary change in health. My breast cancer has decided that my liver is a warm place to spread to. My biopsy last week confirmed that the lesion in my liver that was seen on scans and MRI is definitely a progression of my breast cancer.  It is one lesion and I am waiting for an appointment for a procedure called cryo-ablation , which basically freezes the lesion and kills it, but this also means that my current treatment is no longer working well enough. so I got my first two big shots to the "Ass" this week; a hormone blocker called Faslodex.  I have given these injections so many times to my patients.  I hate given it because its two big needles, one to each side,  and the medication is almost like pushing cement through a needle . My thumb is always sore after pushing that plunger; however, I now know how the patient on the other side of that plunger really feels. "Ouch", that was not fun at all. It really did hurt; and the fact that two nurses, one on each side get to see my bare Ass was a little disturbing. I will be a little more sympathetic the next time I have to give it.

 I will be receiving this treatment again  two more times this month as a loading dose, then once a month. Here's to second line treatment for metastatic breast cancer. I got 22 months from first line, so lets keep fingers crossed for at least another 22 months for second line treatment. The good news is that there are still  many lines of treatment that I know will be available in the future so that I can keep dancing in the the Rain. 

I will keep pushing forward, Living my very best life and I will continue to push past the Storm and Dance in the Rain. 

 Linda (Idalina) 

Too small to Biopsy

 

                    

Freezing after Ativan Nap

Decisions, decisions....When it comes to cancer treatment, it is so important that the patient is at the center of decision making. I have always worked toward this model when advocating for my patients. However, as the patient, myself, I realize why some patients want the doctor to decide. what is the right choice? 

A liver biopsy would have confirmed that what we all know is cancer, is really cancer, but more importantly in my mind was that I wanted to make sure it was still the same type of breast cancer and not a more aggressive form. and  for genomic sequencing to see if I am eligible for a different pill. I guess it s good that there are so many reasons. However, none of it worked since the radiologist could not clearly identify the small lesion to make sure they put the biopsy needle in the correct place. For that  reason , we will wait to do an ablation. I am lucky that my oncologist is reachable and always willing to see me on short notice. Allen and  I met with her today and together, we have decided that this liver lesion is small, so we are going to take our chances and leave it alone for now. The treatment has been very effective on my cancer and even on this area that has been growing very slowly. So, we are not going to consider it progression. We will stay on course with current treatment with another scan in 9 weeks. 

I am both thankful and petrified , but I have faith and I am Stronger than Cancer....

Linda (Idalina)

Remain stronger than Cancer 

                                                          She said YES to the dress!!!

Now that I have my first progression since a metastatic breast cancer diagnosis, I find myself really thinking about the future and what this all means. As a oncology professional, I know that generally each line of treatment may last less time than the previous, but that's not so in all situations. So...I got 20 months out of first line and I plan on getting at least another 20 months out of this line of treatment. and if not, there will be other treatments waiting to be tried. In the meantime, Life is precious and I love my life. There are so many exciting things to look forward to. 

This weekend, my future daughter in law, Kayla, was so sweet and invited me to be part of her special day as she picked her wedding dress. It was so moving to be allowed to be part of this exciting day. This experience reminded me that I have such a beautiful life and so much more to look forward to. I cant wait to watch my son (my baby)  on April 24, 2021 when he sees his beautiful bride come down the isle in that beautiful dress. She is just beautiful. There will be many tears of joy. Then there will babies, They will be wonderful parents. I spent the night with them at their home in New Hampshire and as I sat watching them together, my heart was filled with joy and excitement for all the  love that they share and excitement and pride for what is yet to come. 

Then, there is my daughter and the love and support that I see from her husband and the pride that I feel when I see them caring for my beautiful grandchildren, I will be here to witness So much more, but regardless, I am proud of the part I have had in what they all have become. I made mistakes, none of us are perfect parents, but something went right.  I am so thankful that both of my children have found wonderful , caring partners. 

So, for those who are following my journey. I met with my oncologist on Wednesday. Together, we decided that I will stop my current treatment as it no longer working like it should. Time for second line....Faslodex (two big shots monthly.  Additionally, I will be having another consult visit with intervention radiologist on Tuesday to decide if it safe to biopsy my liver to see if I am eligible for another pill that is based on a specific genetic mutation on the cancer cell. If he is able to safely go into my liver, he can hopefully also do a procedure called cryo-ablation which basically means that they burn that little cancer lesion on my liver. Lets just burn that sucker right out of there. 

Thank you all my wonderful family, friends, and colleagues for all the support, thank you Kayla and Dennis for making my children so happy and I am also  thankful for your parents who raised you both to be such caring loving people.

 There is so much more to come. 

Linda (Idalina) 

Progression already? 

It's been a while since I blogged. Time to blog again as it helps to make sense of an unfair situation. 

When I was diagnosed with metastatic breast cancer in December, 2018, It was a world wind of emotions and decisions. I started therapy with Ibrance, letrazole, and zometa with the promise that Ibrance is well tolerated and had great results with improving progression free survival on average to 28 months. Well, here I am at 20 months and progression already.

I was sure that I would be one of those people who got 4 years plus out of first line treatment. No such luck, the dreadful progression to the liver is now here. Well, time for conversations about the next steps. Time to change therapy, sooner than I had hoped, but still so many options are available and I will persevere. Life is not fair, that is true, but it is so beautiful and so worth living. Wednesday will be the next oncology appointment. second line metastatic (stage 4 ) breast cancer treatment, I am ready for you. 

Idalina 

Fist Month of Cancer Treatment.....

 I can now say that I completed the first month of treatment with no problems. It's funny because once your diagnosed with stage 4 cancer everyone thinks..."Poor Linda". Well, guess what? I'm not letting this diagnosis change who I am. The original shock and craziness of  diagnosis and staging is over and I have returned to life as usual. Yes, it sucks, but people,,,"I am not going to let this stop me." Yes, priorities have a been adjusted; but only slightly,  and I am the same person I was before this diagnosis.  Cancer will not change me, at least for now.
So, here is an update...My genetic testing came back with no genetic mutations that would explain why I have been lucky enough to be diagnosed with breast cancer not once, but twice now. So, for my daughter, sisters, nieces, cousins, etc..This is good news, but it does still mean that they are at a slight increase of risk, so please get your screenings done and stay on top of checking your boobies regularly! I started Ibrance plus letrazole and lupron injections. The only change is hot flashes, especially at night, but I am learning to adjust to this change. I have now finished the root canal that, of course, had to happen in the midst of all of this. I can now start Zometa infusions to strengthen bones that are affected by breast cancer.  I did have to stay away from the karate school and my beautiful grandchildren for a few days while my white count was low to minimize infection, but either than that, it is life as usual. I have continue to work full time with a slight adjustment in my per Diem position (second job). I tried to quit, but they would not let me, so I will continue one shift every 4 - 6 weeks. This will give me that day off almost every week, but I spend the day working on my role as President of my local oncology nursing organization. I will continue to serve my colleagues as president of this organization and will continue to be me..Wife, Mother, Grandmother, Daughter, Sister, Aunt, Friend, Colleague, Oncology Nurse, and Apprentice black belt in martial arts. Thank you to all my family and friends for all the support and I appreciate the continued support.  I know this cancer is there and that there is no cure for metastatic breast cancer, but I plan on living many years with this just like I live with Rheumatoid arthritis.

With much love and gratitude

Idalina (Linda)

The Brain is safe....

Everyday has been something different lately. I had to have yet, another test. I was having headaches and some nausea. Scary symptoms for anyone with metastatic cancer. I knew that it was unlikely that I would have Brain involvement, after all, this is Estrogen positive breast cancer, it would be much more likely with a triple negative, right? It was also unlikely to have breast cancer on the side of a reconstructed breast . So, brain MRI it was. . I was so scarred to get the results; after all, every test has led to more bad news lately..,,,I was due for good news, Right? Well, thankfully it was good news and the brain MRI was NEGATIVE for metastatic disease. Thank the Lord...I had the MRI on Friday at 11:45 and my oncologist called me at 4 pm to tell me that the MRI was Negative. Those were 4 very long hours. I was so thankful for that telephone call and I know that my oncologist was very happy to call me with that good news. As a cancer nurse, I know that it's always great to call a patient with good news. 

My new normal means that my day now starts with making sure to eat breakfast and taking my cancer medication within 30 minutes of breakfast,. So, far the only side effect has been some nausea. This has been relieved with some zantac.. No hot flashes yet...but I'm always cold, so if I get the hot flashes it will be fine. My new normal is just fine with me, because I am still the same person and will continue to be the same person. 

It is life as usual. I am thankful for so much positive in my life and know that I will continue to enjoy this beautiful life of mine. This weekend Zachary and Leah, (my two older grandchildren)  had a sleep over. Having my sweet little granddaughter come in to wake me up with her little voice saying "You wanna build a snow man" on a snowy morning is what it is all about. Then going out to breakfast with my loving husband and grandchildren, cleaning my house while my husband plows the driveway, watching a good show, doing laundry, cooking dinner,  and eating ice cream...Yep, life is good and I know that this treatment will do what it is supposed to do. I will enjoy today and pray for a good response and to live many more years of enjoying my life. I feel positive for many more sleep overs with my sweet grandchildren. This is what it's all about!!

Yes, I know I have metastatic breast cancer and that I will need to have some kind of treatment for the rest of my life. I know that there is no cure, but, I will continue to push ahead and am positive that I will have an excellent response to the treatment and will live with this like people live with any other chronic disease. Cancer will not define me..I will define it...This is just a chapter in my life. 

With much love

Idalina (Linda) 

January 14, 2019

The Rabbit Hole.....

When I was diagnosed with recurrence of breast cancer, my mind was spinning and of course, started to go to examples of those patients that I have had as a breast cancer nurse who have not done well. Rochelle, one of the lovely doctors that I work with said to me "stop going down that rabbit hole". Well, her words have really helped me, but last weekend, I was deep in that rabbit hole and was paralyzed by the reality that I have breast cancer and could have the same outcome as some of these lovely ladies that I have cared for.
I am strong and am so thankful for my knowledge base as it has certainly helped me know what questions to ask and where to look for answers, but at the same time, it can be a double edge sword.
Last weekend was the first time that I had time to think and really allow the reality of what has happened sink in. I received word of my diagnosis of breast cancer on December 19th, There was no time for thinking or crying. I had to get ready for the holidays and make sure that life was normal. I had to get through all the testing and get all the answers. There was no time for crying or thinking. Well, let me tell you, It is important to allow those feelings to be felt, but we must then move on and not allow it to paralyze us.

When I was in that rabbit hole, my amazing husband let me stay there for a little while, but then helped me get out of it as did my loving friend Rochelle Strenger who is one of the doctors I work with. I message her and told her I was having a tough day and was in the rabbit hole. As my partner in treating our patient's, she did not need to say more than, "I know where your head is and get out of that rabbit hole, you are going to be OK".

Today, I am reassured. Yes, it sucks that I have metastatic breast cancer, and yes hearing those words associated with me is hard. I saw a specialist at Dana Farber today for a second opinion. Those words, "You are an oncology a nurse , you know that there is no cure for metastatic breast cancer, but there is treatment," were words of both despair and reassurance. I know that they can not offer me a cure, but she agreed with the plan from my local oncologist for treatment and gave me great hope for the future.
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For now, we move ahead. We have confirmed that I am  pre-menopausal, so here come the hot flashes that everyone talks about. I will be starting Lupron injections every three months to push me into menopause. My poor husband may finally have to deal with a crazy menopausal woman.

For the cancer: some of you may have seen the pretty commercials of the grandmother who is lively playing with her grandchildren talking about IBRANCE + LETRAZOLE for metastatic breast cancer.!! Well, I will be that grandmother. I will also need to start  monthly infusions of Zometa to strengthen my bones.

This is a great option. It has been FDA approved for about 4 years. I follow my patients on this regimen and have ladies who are doing great on this at 2 years and the doctor at Dana Farber reassured me that she has women who are doing great on this at 4 years. OK, so that's good news and if it stops working? Well she gave me so many other great options that can be used at the time of progression including some clinical trials that are close to being approved and will surely prove to be great treatments if and when I need them. So, this is no different than any chronic disease!!!

This is a well tolerated treatment and I wont even loose my hair.....and for now I will not allow myself to go down the rabbit hole. I will be here to spend more years with my Love, watch my grandchildren grow and hopefully some day even see my son get married and have children of his own...The future is bright and I will push forward..... If I start to go down the rabbit hole, I know that I have a great group of family and friends who will drag me out of the hole and lift me back up.

So, my family and friends, remember, tomorrow is not promised to any of us so enjoy Life and eat that cake.
Idalina (Linda)

The Shock of Diagnosis

Anyone who knows me understands that I am  the caregiver and not a very good patient. As a Breast and GYN Nurse Navigator I support my patients and their families through the cancer journey. Little did I know that almost overnight, I would be on the other end.
Let's start from the beginning.
in 2006, less than one year after starting a great career in oncology nursing, I was diagnosed with Ductal Carcinoma in Situ of the left breast. For those who are not familiar with this, It is basically, early, pre cancer of the breast that if not treated will become invasive cancer. This led to treatment that included a mastectomy with a big surgery called a tram flap to reconstruct my breast. I did not need chemo or radiation and was told that my chance of developing another breast cancer was about 2.5% higher than those who never had a breast cancer. I was 40 years old. I always worried that I could fall into that 2.5% and that I could  someday develop breast cancer on the other breast but never worried about the reconstructed breast. after all, "there is no breast tissue".
Who would ever think that I would get a breast cancer on the reconstructed side. That was not supposed to happen. Well, lucky me, I have fallen into that 2.5% chance with a cancer that resulted from the  less than 5% of breast tissue that is always left behind after a mastectomy.  Why couldn't I just fall into that small percentage of people who win the lottery?

Around Thanksgiving 2018, I noticed some fullness in my axilla (arm pit). I then felt a lump. I still never thought it was anything to worry about. My thoughts were, "its just scar tissue", "I just did to many push ups". After all, I know a lot about breast cancer and if I was going to get breast cancer it would be on the other side, right?  I finally got a bit worried and had one of the breast oncologist check for me. Even, she said, "I'm not worried", but you should have an ultrasound. Well, who would have known that 5 days before Christmas, I would find out that the swelling and small lump on a reconstructed breast would be "Breast Cancer". No way, I'm the breast cancer nurse, not the breast cancer patient. This was not supposed to happen to me! That was the longest ride home from work. What a great telephone call to take in the car after a stressful work day as a cancer nurse.  Somehow, I gathered my feelings , swallowed hard, took some deep breaths and came home to sit the love of my life down to tell him this news. Those are probably the hardest words I  will  ever have to say to him. I was so nervous to tell him. After all, it took him 52 years to find someone to grow old with. How I could take that away from him?

The next couple weeks were filled with holiday prep, not sleeping thinking of how I would tell my children, my family, my friends, and lots and lots of tests and procedures. After many tests including MRI's , CT Scans, Bone Scan's,( I'm sure that I am glowing from all the dye and radiation from all these tests); and a bone biopsy. I now have confirmed breast cancer that has metastasized (spread to my lymph nodes and bones).  So how am I feeling. Well the words are Hopeful, strong, determined, stubborn. tough. This does not mean that it's over. Many women live many years with metastatic breast cancer and I will be one of those women. Yes, I have had my pity parties, I have cried, I have worried. BUT...I will not allow myself to go there. It is life as usual. I love my family, my friends, my patients, my life. I will not allow this to bring me down. It is business as usual and enjoying life everyday to its fullest.

I am going to Boston on Monday for a second opinion to make sure that I am making the right decisions for treatment, and than we move forward.

Life is beautiful and I still have a lot of life to live! I will face this head on and do what I need to do to live my new normal with metastatic breast cancer.
Idalina (Linda)