Monthly Archives: October 2014

Tomorrow: The Last Day Of Pregnancy/Infant Loss Awareness and Breast Cancer Awareness Month

I am most likely in a large amount of trouble on one of my social media accounts where I allow actual people from the face to face world to follow me.  I said when you see me as a breast cancer survivor you are only seeing a 1/4 of me as a picture.  I have been trying to have another child for 8 years now.  I have seen the worst in both sides of the families looking for answers about what caused the deaths of our beautiful children due to rare disease.  I have in-laws who refuse to acknowledge my existence. They made so many promises to me on so many occasions.  It ends up lip service every time.  They have never intended to keep their promises.   I think they are ashamed of the babies who have died and me.  I have been trying to have a family since I was 29 years old.  I think in a lot of ways, because I raised in a very emotional abusive family it hurts so much.  I couldn’t have my family’s love and I can’t have the children I want.  I continue to send Reiki to these lonely areas of my heart.  I hope they will heal.  It is like a piece of glass shattered a thousand times.  The holidays are coming.  We see pictures of little ones and huge loving families.     All the things that are my dreams….I hope this year…My driveway will be empty…  We decided to go away for Thanksgiving this year.

I am busy trying to hire acupuncturists and keep to a fertility routine.  The pain was so great to come home to a negative pregnancy test last September.  I hope…  I hope…  I hope…  It’s hard to stay positive after 8 years of “trying.”

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Fertility Journey: The New Embryo Donation Cycle.

It’s been a crazy day at work. Today, I did reach the program on the West Coast to get further details. This embryo cycle is going to start in November, but sometime mid December is actual transfer. I need to fly out the first week of December for the ultra sound. I know I said no red eye flights, but my daughter is scheduled to dance the day after the ultra sound. I booked the overnight flight. I already took one day off that week. It makes sense to have two and a half days in a row off. So this afternoon has been spent booking plane tickets, renting cars, calling my regular doctor and arranging an acupuncturist’s appointments. I almost took two birth control pills instead of one. I realized it and spit out fast. Could you imagine the headlines? Infertile woman overdoses on birth control pills. The other day I was at the dentist and they asked me how a birth control pill was infertility medication. The birth control pill is used in a IVF cycle. I wasn’t having this conversation with them. I changed the subject quick. My dentist of 11 years retired. I miss him. There was no computer in his office. When I went to see him, it was like being magically transported to the 70’s. (I felt this tiny lump in my mouth. I said nothing to no one. I was reassured it is nothing. Cancer Survivor fear lumps and bumps.)

I did stop to watch my daughter dance for a half an hour in her Halloween custom. She is amazing… She is almost there on her toes in ballet. It was worth to shut off myself and watch. Since we waited until last second to make Thanksgiving arrangements, we missed the diner reservations. About 10 minutes ago, my daughter gave me a heart attack. She has grown so much this year. So, I get a cell phone call from my husband’s cell phone, “mom, it’s an emergency.” I had visions of a car accidents and the police telling her to call mom. When you have lost two children from a rare disease, this is what you think. She says to me, “I tore my Halloween custom at dance school badly.” I am breathing now… Curse the person, who taught her how to use a cell phone! That would be me!

Thanksgiving is a tough time of year for us. Our daughter was born still a week before Thanksgiving. My biological father, whom I have not confirmed his death died around Thanksgiving. I do not have a lot of family at all. My in-laws do their own thing. Even after our daughter died, my mother-in-law refused to take my husband and my daughter for Thanksgiving that year because “she had plans”. I wanted nothing to do with Thanksgiving the year my daughter died. I found a last minute restaurant and I went although I wanted to cry. The following year, I was in cancer treatment and I worked the holiday at the hospital. My last chemo treatment was the day after Thanksgiving. My mother had died a month prior. Not one person sent an invite. The refrigerator quit a few days before. Everything was ruined including left over infertility medication that my husband and I worked so hard to save for the previous year. Somehow mom the magician did it all. Chemo did not stop her. She found a way. She went to work and Thanksgiving diner happened. Somehow it felt really good to get away for the day last year. Especially this time of year, I realize my mother, sister and brother are not here. I keep praying for the day in my life, when my sister and brother can be a part of my life.

FYI: I looked at the custom for Halloween. It’s fixable. When you are 9 year old and it tears, it’s an emergency!

Going Back To Church: Struggling With The Sprituality Piece

My daughter and I are at odds about the family church. Before I ever got pregnant, I went to many churches. Our city church in my domination has no kids. Most of the members are grandparents. I check in with them every now and then. They literally bring the grandchildren in once a month to keep the Sunday School open. I found this church near a college in a nearby town. Our city has beautiful parts, but we are not as wealthy as the surrounding towns. My city has a reputation on top of it. These people cried with me when my first daughter died. We prayed so hard for my living daughter. She came. Then, the miscarriages came. As one miscarriage happen after another and another. I stopped talking and crying openly about it. My in-laws weren’t interested. My sister-in-law was having babies left and right. She is in the process of a divorce with three kids.

Between 2009 to 2010, I buried so much between the baby dying, two family pets dying, loosing a job, my breast cancer diagnosis, finding out someone was carrying the rare disease and finding my mother died from natural causes. After the medication for chemo/radiation wore off, I began to have anxiety attacks. Literally, I would be at work. The image of my mother would haunt me. I also had these stray thoughts that somehow my living daughter died. I understand this because I work with traumatized individuals. I went to the two reverends of the church. I asked both the reverends for help. One was going away. The other one was too. I told them what was happening. They both came back and I felt forgotten. I grew up in a rough emotional abusive environment, sometimes I am not the most forgiving individual. I did the usual becoming passively angry. One Reverend left. One reverend told me when my baby died that he felt like I was lecturing him on infertility. The other one, I avoid at all costs. What I found was I was filled with rage. The problem is my living daughter has friends there. I began just being polite. I would talk to people, but not really talk to them. I was short and polite. I have heard many things about being infertile I got so tired of being told “just adopt.” I would be told because I was crying about my daughter’s death that I needed some serious help. What is so funny is if I start crying about being diagnosis with breast cancer that is acceptable. If I cry because my husband and I know who carried the rare disease, we need help. It’s funny what burdens we carry. I teach people to accept their feelings on a daily basis. Somehow because I have one daughter, I need to seriously get over my infertility issues. Lately, I don’t cry at all anymore. My Reiki teacher says trust me the grief is there. Recently, a woman told me your daughter died to save your life from breast cancer. What a cheerful thought! Are you insane? Forget the fact she died from a rare disease. The doctors know nothing.

I have been trying this, let’s be social at least. I did go to church. I kept it basic conversation, but you can’t hate people for not knowing. I was asked about the West Coast. I said it was personal. So, my daughter loves that church. Really I skip as much as possible. She wants to go. I am going to attend some meetings at another church. Spiritually that church does nothing for me. We have reached a compromise about it. I am going to be social at least, but not soulful with them. I am on my own journey.

Another Profile Match Came

I am going to give a little more information than what already said on Twitter. Yesterday, the whole family went to the gym. Our gym has a family center where children over eight years old can work out with you. Yesterday, I am on the elliptical reading a book on my cell phone. My eyes will recognize the West Coast program’s email address from some distance away. We got a profile match for a fresh cycle. A fresh cycle is going to be a little more tricky. The ultra sound has be done on the West Coast before 11/13. I know from other conversations, we have a projected date of a transfer for Thanksgiving week. They can’t give you an exact date because it’s another woman’s cycle. The profile looks great. The embryo donation is a combinations of donors. The egg donor has two children of her own. The sperm donor has no history of pregnancy yet. The egg donor is lives on the wild side in a good way, but that’s okay. Both have blue eyes. I am guessing a child from the combination has a really good chance at having blue eyes. My husband and I have hazel, but we have blue eyed people in the family. The sperm donor has reddish hair, but we have red heads in the family, not in this household.

We accepted the profile match. The plane schedule is another headache in it’s own right because it is getting close to Thanksgiving. The one airport a half an hour away no flights. The direct flights are to an airport an hour and a half away. Tons of overnight flights, which I learned from April I barely sleep on a plane. Our daughter missed 5 days of school for the trip in September. I am waiting to hear back from the fertility center. As I have said before, my husband has a new job and my daughter has school. This will be two separate trips to the West Coast. I am not sure if husband and child will be able to join me for some of it. I hope so! I would really miss them! My husband and I had a long conversation today. Fresh cycles have increased pregnancy rates that the reason we requested it. We went back and forth on how many embryos to request. I have one living child and I have been pregnant 6 times. I finally said to my husband, why are you so concerned about twins? We should have six children. Even through, we understand the genetic nature of our losses, miscarriage and stillbirth scares me. That being said, we requested two embryos.

Today, I went to a training today to get back on track about career goals, which will help me on obtaining a different related license in my field. Some times when we are in fertility treatment we forget we other dreams. There was another excellent training in November, but how many days can a person be out of the office? It’s the same week as the ultra sound. This is the issue for 11 years now of my life. I am just trying to find the balance between career goals, fertility treatment and family.

International Campomelic Dysplasia Awareness Day

My first daughter died almost 11 years ago a day after birth due to Campomelic Dysplasia. My other daughter with Campomelic Dysplasia would be 5 years old next month. There was a internet group for support, but awareness is growing for all rare diseases I lost two babies due to Campomelic Dysplasia. What I love about today is I am not the only one! It reminds me that I am not truly alone in the world! It’s like Rare Disease Day! Yes, world our family exists…

Granted it is not to the same awareness of breast cancer. This week I had an interesting conversation with someone against chemo. I am not trying to sound judgmental here. I didn’t want to go chemo. My daughter died the week before Thanksgiving due to Campomelic Dysplasia. I had waited months to try again, when breast cancer came. After months of doctor appointments and in the middle of trying to get pregnant, I was diagnosis with breast cancer. I knew treatment may decrease my fertility, but I choose life and chemo. Reiki and acupuncture helped me but doing as I was told by the doctors was important. I promised God that I would bring awareness to Rare disease if I survived. If I have to tell my young breast common cancer survivor story 10 billion times to bring awareness to rare disease so be it!

Thought Provoking Time At Reiki Circle

In so many words, I was told to speak more last night. Since I was told my eggs are low quality, I have turned inward. In social events, I blend into the background. I am different. Many don’t want to hear about it. After my first embryo donation cycle, I didn’t cry. I have a favorite place, I avoided them for a month, because I wouldn’t want to cry. I have noticed with age that I am withdrawn and I don’t cry as much as I have. I began to turn silent after my first daughter’s death. Honesty, I can talk and cry. I tend to live in my own mind/world.

I haven’t heard anything from the program out on the West Coast about the next time. The other day, I started wondering around a store looking at possible gifts. There is really only my husband, daughter and I. So, I don’t answer to anyone else during the holidays. Then the thought hit me, I don’t know what state I will be in for Thanksgiving and my husband and daughter celebrate Christmas. So, how does one buy gifts under those circumstances.

I was encouraged to speak more last night. I really don’t want to. The years of pain and despair tend to just come flying out when I speak. I have lived in silence about the genetic tests, infertility treatment and pregnancy losses. When it comes, it comes flying out uncensored. At least, when you type there is a backspace/delete button.

Today, I was talking to my friend, who knows the whole story about embryo donation. We are talking about the West Coast when all of a sudden, I burst into tears. The fear of never getting pregnant again came out.

My dreams of having a baby kept me going during cancer treatment. I had some friends I could talk to during cancer treatment. I didn’t even have a smart phone in those days. I would do my counter-cross stitch and hoped chemo was quick today. During my Taxol treatment (different form of chemo), they gave you so many meds that you slept during the treatment. There were days, I didn’t want to go. It was a really bad winter and we were digging out for me to go to radiation at 6AM. I kept saying just keep going, the quicker you get this cancer treatment over the quicker you can get pregnant. The radiation department was amazed by my motivation. My husband never let me shovel once. Of course, I didn’t tell them that I was plotting to become pregnant again. We only live 10 minutes from the hospital. I could have walked if I needed to. It’s been 3 years since I returned to fertility treatment after the breast cancer. I start to wonder if my body is really broken.

A lot of planning and dreams went into the trip last September. Nothing happened. I hold on to this job because I need the time for fertility treatment. Meanwhile, I think I earned more in college without both degrees. Then, we have taken a loan out for the cost of program and we have travel expenses. The guilt of it all came flying out with the tears. The expense of the program is guaranteed. My heart and my soul isn’t. It’s the end of the road for fertility treatment if none of these cycles work.

The Hole In My Heart:

I have been mediating more. Some days the anger, the hurt and the pain of it all comes to the surface. There is this emptiness of those who have gone. The reflection of my mother’s death has brought to the surface how much that day I wanted a hug. A hug of you count! It never came. All sudden I swept out into the drama of my brother and sister. For days, I cried. I remembered seeing her dead. These images taunted me for months and years after her death. I turned agnostic. I kept reaching out to others. HELP! I would get the promises that never emerged. Some days, my heart gets trapped into that year. So, I haven’t been loved in my life the way I wanted. In this pain, I blended into the background. I give the expected responses. On the road of infertility, breast cancer and recurrent pregnancy loss, I learned I was on my own. People tend to make promises to sound good. I do have wonderful people in my life, but in these dark thoughts what do you think of the most. So when this sorrow raises, I fight it. Lately, I have been thinking why not Reiki it. No one in life is perfect. No one will exactly love you the way you want. Instead of fighting it, send it self love. Too long, I sent love to others forgetting myself. Namaste!

I am scared, what if the embryo donation doesn’t work EVER? I sit in meditation of trying to bring this baby into the world. What IF I FAIL? I love the work I do, but I accepted a job without benefits for my daughter’s schedule and treatment. This week, I saw another low pay check. This is my last year. I have enough self image difficulties with loosing two children from Rare Disease, infertility and recurrent pregnancy loss. Another thing, I am getting a dog! Laughing! I put so much of my life on hold for another baby… REALLY LAUGHING! As long as I get a dog, I am okay.

Seriously, looking at your self. How do you find infertility and recurrent pregnancy loss has effected your sense of self image?

Coming To An Understanding That I May Have A Social Phobia

I have made many choices that others have critical of. These choices are what I believed were the best choices. Some of them weren’t. I carried a baby to term most would not have. I hired the worst people on the planet to care for my Rainbow daughter after her birth. From the second she was born, they pushed her wellbeing aside and took out their hidden agendas. It was when she was six months old, I began to realize wait something is really wrong here. I kept saying it to others. I was told repeatedly that I was an anxious new mother. I was really young then. I learned to listen to my own heart. As the plot unfolded, I found myself in the dark listening to my heart. My sadness is forever… Breast cancer took my fertility and I may never get a chance at the maternity award. The first year of my living daughter’s life, I spent tons of time watching my back due to a stocker and an alcoholic brother. Plus, I was adjusting to just working weekends. My mother had serious health issues since I was 13 years old and she was involved in a car accident.

We decided to try again. The miscarriages came one after another. One at 6 weeks, one at 18 weeks and one at 13 weeks, I stopped telling people. My daughter was 3 years old, when I decided to return to work full time, so I could have childcare for doctor appointments and money for IVF. Our health insurance paid for IVF, but the meds were not covered. All of sudden, we were not getting pregnant. So, we saved and saved. We paid for those meds. The cycle was negative. A month later, I got pregnant on my own. I kept it a secret. My mother didn’t know about the D&E’s. Then, we learned the baby had the same rare disease as our first daughter, who died. I broke my silence. For 4 weeks, she had love of a lot of people, because we knew she was going to die before or after birth. She died a week before Thanksgiving. We had a horrible time burying her at Christmas time because of everyone’s schedules. December is also my husband’s birthday. She was buried about a month later. I was told by some not to talk about it. Six months later, I was diagnosis with breast cancer. I was just surviving. I lost my job. I found a job. My living daughter was in kindergarten.

Where I am now…. Forty years old, I have accepted embryo donation as a way of having a child. Somehow along the way, I began to isolate. It’s always on my mind about getting pregnant or the babies I lost. I feel different. I had an excellent single mother, who inspired me to go to college. I went to grad school. I have things that I only dreamed of as a child… a house and a car. Okay, it’s a small house… it’s ours. I don’t like going to church. It seems to bring out my intense feelings. I would like to start over. People did not grow up the way I did. Plus our city is not the economic best. It was where we could afford to buy a house 15 years ago. We go to a town with a lot of wealthy families nearby. My daughter has friends there… I am polite, but short with others there. Thankfully, we won tickets to a local fair. We are off the hook this week. My daughter will not switch churches, so I skip a lot. From a religious perspective, I have become an agnostic from life events. I silently cry after church every week. I feel different… I don’t know if they see it.

Here is what I hate about the face to face world. No one seems to get the connection that the infertility and recurrent pregnancy loss lead to the breast cancer. To save my life, I surrendered my fertility to have treatment. Many will not allow me to talk about being infertile. Many don’t want me to talk about loosing children to rare disease. It’s okay to talk about how I am a breast cancer survivor. Maybe, if I could have spoken about my recurrent pregnancy loss, infertility and genetic testing, would the breast cancer have ever happened? It was my left breast. Right near my heart. There isn’t a day I don’t think of my first daughter, who died a day after birth about 11 years ago. I think of my other babies too.

So what happens to me for the rest of my life? You can’t just live on social media. I have this career goals that has been waiting for the baby to come for years… I am going to join a religious group at another church. I am going to keep going to Reiki circle and mediation group. I am going to keep going to trainings. I am going to keep praying that 11 years later I have a baby.

The Death of My Mother

My aunt called and reminded me of an anniversary coming up. October 17th, it will be four years ago, I found my mother had died from natural causes. During my cancer diagnosis, I was really scared. Our last daughter died 6 months earlier before I was diagnosis with breast cancer. She died a week before Thanksgiving. I had a kindergartener and I didn’t know what to do. My husband and I are each others supports. We had just promised our daughter a private kindergarten, when I lost my job. The hospital I worked for had a job was able to hire me back. A month later, I was diagnosis with breast cancer. My mother suffered from some form of dementia. She had her good times and bad times. I wasn’t going to tell her about the breast cancer. So the day, I was diagnosis. I went to my mother. I had my living daughter home that day for a dentist appointment, when I was called to the hospital. I didn’t want to tell my husband because back then he worked in Rhode Island. I tried to put up a good show. I thought my mom she had dementia so what would she know. She asked what was wrong. I said that the doctor and I had talked and agreed to a mastectomy to be on the safe side. (I never had the mastectomy. I lost my nipple instead.) My mother had one of her bright monuments. She looked at me in terror. “Mastectomy, you have breast cancer.” I got her to quiet down because my daughter was there. That monument stayed with me for the rest of my life. I spent the rest of my treatment/my mother’s life begging her to stay alive. I openly cried in front of her. I was determined to keep her alive, work full time and I was going to have another baby. My mother was my world. When she died, I lost my connection to the family I came from. Years earlier, we adopted her cat, so she could move into senior housing. The day began with my first experience of neuropathy from the Taxol (chemo). I was begging my daughter not to go to church, but she wanted to go. I took her shopping. This child who was always well behaved was yelling, running and screaming all over the store. Then, I had the meeting for one of her activities, which I didn’t know was somewhere else. The whole day was bad from the second I woke up. The neuropathy came and went. I was just tired from the day. My husband started yelling. My mother’s cat was dying in front of us. My daughter, who was in kindergarten was screaming. I grabbed the cat carrier and told my husband that was going to the emergency vet clinic by my mother’s. I called my mother’s phone a billion times. Her cat had been sick for a long time. Tonight, I thought I am going to tell her it’s time to put him to sleep. I left the emergency vet clinic. They asked me if I was okay. I told them to keep him alive until I spoke to my mom. The minute I entered the house, I knew something was wrong. I found her. All of sudden, I didn’t know where I was or what to do. I grabbed her phone, because I didn’t know where I was and dialed 911. She had died hours ago, when I found her. I had the police notify my brother and sister, because I couldn’t deal with them. Months earlier, I begged them to come and see me before breast cancer treatment. They made plans and never showed. Here I was bald from chemo. I couldn’t take it anymore and asked the police to leave. Her cat died the day afterwards, shortly after we had returned to put him to sleep. He started dying on his own. Months after cancer treatment, I would burst into tears for months afterwards. It was like watching everything that I love die that year. I felt helpless like I couldn’t save anyone. I have been able to rebuild my life from the ashes of that year. Somehow I can’t ever forget what happen… Somehow, I learned in the mist of all that I was capable of so much more. My mother’s death reminded me how much she wanted me to become a teacher. I went back to working with children. I still do work at the hospital on school vacations. This is my favorite photo of my mother. Many have asked me if she was an actress from the photo. She was this beautiful person, who survived so much. Her biggest dream was for us to go to college. She inspired us and loved us more than anything in the world. She taught me so much…

This song is a symbol of all my losses from 2009 to 2010. I love the video! Today is about rebuilding our lives from the ashes of what was.

Remembering Cancer Treatment: October Pregnancy/Infant Loss/Breast Cancer Awareness Month

We heading to NJ/NY soon.  I have the start of a head cold.   My living daughter mildly sprained her ankle in dance class.   We will survive this too.  We have done worst.  It was five years ago, I was diagnosis with breast cancer this year.  I spent that summer in treatment.  This morning I pack the ice compress for my daughter’s ankle so we can go to NY/NJ for the weekend.  I was remembering the summer in cancer treatment.

I had just returned to the hospital job after being laid off from another agency.  A month after returning to the hospital, I was diagnosis with breast cancer.  A few months prior, my daughter was born still a week before Thanksgiving.  My living daughter was four years old at the time.  She learned her ABC’s, how to deal with bereavement and what chemo was.  It was a year of losses.  We started the process of genetic testing again to figure out why another baby died from the same rare disease. Our health insurance changed and we lost fertility coverage.   I was very involved in fertility treatment.  I was always monitoring for ovulation and breast changes (looking for pregnancy signs.) One cycle into trying to get pregnant, I noticed blood in my bra.  I got myself to the doctors ASAP.  A lump was found and I knew it was cancer.  Having infertility saved my life.  Everyone tried to reassure me that I was too young for breast cancer.   It was the one cycle I was glad not to be pregnant.  I had no family history prior to my diagnosis.  At 36 years old, I had breast cancer, a new job and my daughter was to start kindergarten in September.  I was just remembering crying a lot and saying, how am I going to do this all.

My friend drove my living daughter to school.  I had enrolled her in the summer camp program prior to her starting kindergarten so she could get use to the school.  She went to a private kindergarten.  All these teachers stepped up to the plate within a few weeks of knowing us.  It was a long drive because we picked a school not close to us.  They were worth every penny and the drive.  My living daughter was well cared for.  It was good to say goodbye to my friend this week.  She had this old swing set out in her yard that she had to get rid of.  My daughter’s old swing set was ruined.  Of course, I brought the swing set.  I had the chance to once again express my gratitude to my friend for driving her to this school.

About packing the ice pack, our family did a few weekend getaways that year of breast cancer.  I was just remembering my hardest step of the breast cancer journey.  It was the surgery where 11 lymph nodes under my left arm were removed.  I had 3 surgeries, chemo, radiation and medical menopause during my cancer treatment.  It took me a good year to recover from chemo.  My hair just grew back in 3 years to my normal length.  The left arm needed lots of aftercare like physical therapy to get where it is.   After surgery, I traveled with an ice pack for my arm on our overnights.   Five years later it’s not the strength it was, but it is close to normal.  My daughter when she leans on it gets the nerve ending damage going.  Otherwise I have close to full range movement in the arm.

Some days my head gets stuck in the negative thinking about the lack of support from biological family.  We have a lot of good friends that in a pinch are my family.  I needed this week to remind me of that.  My in-laws have been distant for years.  I sent an email telling my mother-in-law how isolated I feel in life, when we were out in CA.  My sister-in-law is getting divorced.  She was all upset about my email.  I just mailed her a card.  Honestly, I don’t quite feel it.  Some days, she gets so wrapped up in the drama of my sister-in-law.   If anything comes out of this…  I hope she will remember we need her too sometimes.  I am facing traveling alone to the west coast for fertility treatment.  My friend is retiring and moving to AZ.  My husband has a new job and my daughter has school.  I don’t leave their sides usually, but I need to now.  Right now, I found myself in that place like the cancer treatment for fertility treatment.   Some days, I get caught in the negativity of all it.  I need to remember what I have.

My dream is to become a mother again…   I refuse to let cancer and rare disease to take my dream away.   I pray for another child gets to use our new/used swing set too!