Monthly Archives: August 2014

Social Media and Family Dynamics

This paragraph was written in the last blog and I wanted to keep it but move it. 

 

Many people in my face to face world are intolerant to me remaining in communication with other communities about rare disease, child loss, miscarriage and infertility.  I get this, but I don’t.   I post something on cancer and no one says anything.   If I tell someone my experience and certain people see it, I will get a mess of angry messages mostly from my cousins.  Some of them have been cruel enough to say, you need to move on.   I also was told point blank you have a daughter and you have nothing to grieve by relatives.   My sister and brother have told me that I am mentally ill because I speak my children’s names.   One of my daughters was born still before Thanksgiving.  I am the mother to all my children.  It is not fresh loss, but I have my times where I grieve them.  The problem is there is a sad family history of secrets, which was going on before my daughters died.  When I was a teenager, Alateen saved me.  They don’t like it, when I do something that breaks the “secret.” I made a promise to my babies, who are angels.  I promised to remain in contact with the rare disease community and try to work as advocate.  Even this at times is difficult, because I have a professional career too.  I want to be a part of the process.  It’s my way of healing the loss of my two daughters.   I would to close the account all together, but we would loose so many other friends. So, I remain in contact through other social media accounts that the face to face world people are unaware of.    I am still working at remaining in contact with my family, but not getting caught in the family dynamics. 

I come from a very emotional abusive past.  It’s only recently, we are accepting the effects of emotional abuse.  Only recently, we allow siblings to discuss sibling abuse.  Before it was “kids will be kids.”

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Remembering

This past winter and spring, I saw a lot of friends and beloved pets die.  It’s the last Friday home with Hope.  I need to get cleaning soon.  Next Friday night, I am packing to leave for the embryo donation cycle in California.  Shortly after the New Year’s, my inspiration and heroine during cancer treatment passed away.  The person I speak about  was my dance teacher.   I wrote an entire blog to her at recital time.  My daughter wrote a blog too.  Yesterday, we got the recital video.  I emailed the blog to her husband.  He read it at recital.  My daughter was behind stage and didn’t hear the blog being read to the audience anonymously.  This morning, she finally saw it.  We both cried together. 

There is another friend, who was like my big brother.  We both worked together.  When I had cancer, he was the Roger William of my life.  Both of them had the same personality.  He was louder than the hospital speaker.  Was I just being paged?  No, it was my friend.  He had the evening shift.  Many of times, I would found laughing with him.    We had many things in common.  We went to the same college.  Both his wife and him were infertile for years.  Our lives and families were torn apart by addiction.  I can not communicate with most of my family due to addiction and concerns about my living daughter.  My friend had recovery.  Both of us had worked hard to create careers.  He kept me in laughter during cancer treatment. His favorite thing to do was to play the song “Hamster Dance” in my voicemail during his shift, so I would get it first thing in the morning.  I can’t remember one serious conversation with him.    

Last February, I did my last cycle with my own eggs.  I had taken months off from fertility treatment to try to fix those eggs!  In early March, my body informed me the cycle didn’t work days before the pregnancy test.  I was heart broken.  I kept sobbing, “I can’t do this anymore.”  I called the program out in California and arranged to fly out to complete my application in April for embryo donation.  I thought of my friend, I hadn’t heard from him in months.  I noticed he closed his social media accounts completely.  His number was no longer in my cell phone due to his decision to close the accounts.  I wanted to contract him and tell him about the embryo donation program I found. 

A few weeks had past, I went to see my RE (fertility doctor) for closure.  My husband and I thanked him for all his help.  We told him about our application to the program in California.  Later that day, my hospital co-worker called me.  My friend’s body was found.  He had committed suicide.   It ends up, his wife and him had their final IVF cycle at the same time and it didn’t work.  My friend had been unemployed and relapsed.   They had no children.  The wife had three miscarriages.  My heart was torn out of my body.  Two of my greatest supports from my cancer treatment died.  My soul morns them both.  Sometimes, I listen to Sweet Home Alabama remembering my dance teacher.  Other times,  I am listening to Hamster Dance.  I have since befriended my friend’s wife on the social media account that I allow people I know on.  She did get one of his social media accounts back up.  My husband and I picked baby names along time ago.  I am considering using the names of my two friends to honor them.  The rule in my family is a baby can not be named for a person, who died.  My grandmother’s first died due to premature labor.  My aunt told me she thinks my grandmother was RH negative, which impacts miscarriage and pregnancy loss. (FYI: My grandmother died when my mother was a young girl due to complications being a Polio survivor.   Wouldn’t it be great if cancer, infertility and rare disease became like Polio?)  So, I have been looking into creative ways to honor these traditions and name those babies after the people I love.  In this modern day, we love to play with the spellings of names.  I am thinking positive thoughts this morning and hoping finally we have a baby! 

 

 

 

Connecting The Thoughts

I reflected on my thinking last weekend.  On Tuesday, I learned my mammogram was normal. Whew! There are matters in my heart that are deep.  It is something I have been aware of for years.  I have decided to send Reiki to the situation that I speak of.

The week has been crazy. The side effects of the medications are not as bad as last week. Our plane leaves the weekend after labor day. This is when cycle is really going to start. The day after the plane lands, I have an ultra sound at the clinic. The final ultra sound can only be conducted by the program. Friday, September 12th is the transfer, if the ultra sound goes well. I started looking into options for egg donation last October. I found this embryo donation program in January. My to do list is growing. School is in session for a part of the state. This week another person asked me if I was moving to California. Finally, I responded no it’s a personal matter, but the way everyone asks if I moving, I am starting to wonder if I should.

In between the ultra sound and transfer, we have some fun activities planned. I really hope this will be a one trip wonder. I have 3 cycles in total. It would hurt if I needed to return. So much went into a trip.

My daughter stayed with her grandmother this week. The last week of August is usually the traditional family vacation. In the craziness of this week, the following conversation occurred between my daughter and I. She tells me she wants to see the university down the street from the hotel and the fertility center. What was the reason? Well, she might want to go to school there. Then, she asked me a question with the seriousness of a 9 year old. If she goes to college in California, will the family move with her. I am laughing in my head. I felt like responding like our new health insurance company. You can go to any one of the six New England states. Anything out of New England won’t be covered. Prior to the conversation, she wanted to attend the local university that ran her summer camp. Our church is in the same town and we know some of the professors. About 4 years ago, I was informed that I would be driving her to all her classes at the local university, because she doesn’t want to drive. What humors me to no end is she so serious.

And She Saves Herself… I Think…

Since my breast cancer diagnosis, my soul craves spiritual level thinking.  I find myself often in deep philosophical thoughts about the world and the universe.  Sadly, I find a lot of people are not on this level.  I am trying to say I am better than anyone or I do not have respect for anyone.  For a few years now, I have pulled inward.  I have tried to keep it polite.  It’s not that I think I am better…  The journey of infertility and the universe is constantly in my thoughts.  Due to my life experiences, I do have days where I grieve it all.  I feel different than others.  This has been going on since birth.  What is it I am really looking for?  Yes, I want a baby.  Yes, I want a dog too.  Yes, I want to obtain my career goals.  My living daughter sings this song, “tell me what you really want.”  (With my daughter, I don’t know if it is real or something she wrote.  She is her own spirit to say it nicely.)   There is something deeper on a spiritual level I am trying to get at.  What it is.  I have no idea.  Other than, something is missing. 

I stopped talking to others about this level that.  Well today, I gave it one more shot to express my needs and feelings.  I found myself drowning in another person’s river of denial.  There was a time that I was like others living on the surface only.  I have no answers.  I only have pretty profound questions that lead to other questions. 

Lately, I have been working on my trusting my gut instinct about life.  The more a certain person protests, the more certain I know I am on the right path.  I am really glad that I went back to meditation class and Reiki Circle.  When the conversation was over, I felt myself even more frustrated.   I remember what my meditation teacher said, “it’s not about if others are unplugged, it’s about you remaining unplugged.” 

This is a deeper level.  So, I have spent the day in my grief and reaching out, when I know that I shouldn’t.  This person is not this level.  Not trying to judge myself better…  We are at different places.  Nor do I feel this person should be completely removed from my life.  The person is good.  Feelings have changed over the years and there is a respect between us.  I can’t tell this person to go have some horrible life changing events and come back to me.  There are days where I am close to saying that.  We are where we are at. 

Anyways, enough about the person.  I am a physical, mental and spiritual person.  So, today, I looked into safe way to lower that cholesterol, maintain enough fat to grow a healthy baby  and prevent blood clots in pregnancy.  Mentally and spiritually, I looked into a different type of meditation. 

I have spent so much time grieving everything else that I never allowed the real grief to surface.  I guess I am capable of my own denial too.  Remember, I got diagnosis with breast cancer when I was just given the okay to try to get pregnant again.  My anxiety has been very high this week.  I finally am going for embryo donation with a good success rate for having that baby I always wanted.  I keep thinking of the tech yesterday looking over the pictures.  Hopefully, it was to just check the charity.  I am scared of the c word returning.  It would ruin a lot of plans.  I am going to bed, because I haven’t slept well.  I am also not getting my usual six hours to myself since my daughter is not at school yet.  She is home with me a few days a week.  As much as I love my job.  I need one day of six hours of silence to clear out the negative energy of the week.  Tomorrow, Reiki first thing and work. 

The doctors told me they would call Tuesday or Wednesday so I don’t have to wait the whole week for a report to show up in my mailbox.  I am trying to think of a way of protesting this I have to wait now since I am 40.  I want it to be respectful, because I have gratitude for my cancer treatment twice at this hospital.  Maybe I should just be grateful not to be a priority case because that would mean I was really fighting for my life.  I don’t want to come across as ungrateful cancer patient, but my worst nightmare would be for cancer to return.  I get the idea.  They don’t want to overwhelm the staff, but it’s a nightmare for me to leave without knowing was it normal.  Until then, I will try to journal these thoughts. 

Another Random Act of Kindness on Mammogram Day

Today, I went to buy my friend a coffee for coming with me on Mammogram day. At the window at the coffee shop, I was told someone in the car in front of me had paid for my order. I wished I could have thanked the person. It was a random act of kindness.

Mammogram day is not a fun day. My friend had me laughing so hard. The conversation was being a teen ager. I usually go with my husband and shallow a Benadryl. My husband has started a new job and my friend came with me today. I had nausea for two days. It has gone away. Since I am in fertility treatment, it’s not the day for Benadryl. I did cry a little. Since I have had 5 pregnancies losses and breast cancer, sometimes, I become fixated on trying to read into facial expressions of medical personnel. Today, I went into yoga breathing after the test. I completely ignored the person, while she was looking at the clarity.

Other than infertility, cancer and two babies dying from a rare disease, my overall health is good. Today, I gave them the 3 minute basic summary of fertility treatment. I asked them about breastfeeding. When my living daughter was born, breastfeeding was a struggle. She was loosing weight and I gave up. My first daughter died a day after birth. It seems so stressful for my daughter and I. This time, I am going to push myself harder to try. It’s going to be harder. I have one operational breast due to cancer. The request is for two embryos. Twins are a possibility. Laughing, we will do the math later! I have never had this conversation before with them, so it is a sign of me being positive. We went out to lunch and had the best time. There isn’t many places to go around my Boston Hospital.

I got to see my Aunt on the way home. My cousin saw me on the way in and closed her front door. My friend asked are your cousins always so friendly. It is common for family members to be so self centered in this generation of the family. That’s the way it is. My aunt was in good spirits. She is leaving for Florida soon. Her plane comes home the day after my plane leaves for California. My friend just by being around me got to hear how complicated infertility treatment is due to some phone calls. Funny enough, I realized after shortly leaving the house that I forgot my meds in the rush to the Mammogram. I had competing issues today.

Tonight, I am relaxing. My living daughter did an awesome job on the dry run of a new routine for school. She deserves an ice cream. I love chocolate and I did well today! I ate horribly today off my fertility diet, but I survived another mammogram. I can eat whatever I want today! My daughter finished the summer program as of today at the daycare center. She liked it there. Maybe, we found a replacement for the gym camp program. Next week, my husband’s mother is taking her for a few days. My kid job goes into full swing next week. She starts school the following week.

How Being Infertile Saved Me From Breast Cancer & Life Today

I have been in infertility treatment since age 30. At first, our diagnosis was recurrent pregnancy loss and male infertility. Here I am 40 without another living child to come home. This journey to embryo donation has been a combination of spiritual awakening and a part of a healing process. In the course of one year the following events occurred, my daughter was born still with a form of rare disease, pets died, my mother died and I was diagnosed with breast cancer. Memories of my still born daughter have been resurfacing lately. As if she is saying, I am here with you! Last Monday, I cried the entire length of meditation class, which is a good sign. Years after the lost, there are days were the pain is like it happened yesterday. Crying releases the spirit making way for the new ones, we hope!

I have had some really strange dreams about college and schools. One of my jobs, I work with a school and the school year is starting soon. My one job with kids is picking up full speed. I am starting the process of saying see you next school vacation to my hospital job.

I am cleaning the house as fast as I can before my embryo transfer in September. I am laughing, as if the embryos can see the house. I haven’t heard from the high risk OB GYN we hired in Rhode Island yet. My regular doctor has been very kind to me in assisting with the ultra sound needed here for the embryo donation cycle.

Sometimes anniversaries of sad events are hard. I had just lost a baby. I was just going to give it another try. I was checking for fertility signs/pregnancy signs, when I discovered blood in my bra from my left breast. I am expecting them to say, you have a milk duct infection. I was diagnosed with breast cancer. I don’t always understand everyone. Sometimes people can not connected the still birth of daughter with my grief as a breast cancer survivor. The two are always connected in my mind. To save my life, I needed chemo. My breast cancer happened in my left breast over my heart. I always said it was as if it was a symbol of my recurrent pregnancy losses. As if my tumor was my unspoken grief. Chemo may have destroyed my fertility. It’s not clear, because I am 40 now too.

I did have a living daughter at the time, who just started private kindergarten. As her mother, I felt such guilt. First the baby dies. Then, six months later, we are reading children’s book on what cancer is. We dream as parents of the first day of kindergarten. It was the first time I wore a wig the same week that kindergarten started. She hated the wig. Over time, my daughter began to understand it in her way. She began to wear my wig she hated. She would steal it off the wig stand and she would come giggling to me. By Christmas, it was a joke between mother and daughter. I held on to my dreams before cancer treatment. I am going to become a mother again!

The medications for embryo donation are causing side effects. I am not sleeping well. Today, I was feeling sick for the longest time. It’s mammogram time. I am having a hard time with keeping it positive. I am waiting for the other shoe to drop. I have decided to talk to the hospital about trying to see if I can get the results the same day. I understand it’s a billing question, please understand my point of view. I was 36 years old, when I diagnosed with breast cancer for the first time with mammogram. I guess it’s because I wasn’t old enough for a routine mammogram. It’s only been four years. Of all the appointments, I fear the mammogram the most. I love the feeling of leaving the hospital with a normal mammogram report. Why should this year be different because of an insurance code? I am hoping they read it for me the same day.

Fertility Journey: The Excitement Builds and The Anual Mamogram

I saw a long time friend today. I told her about the embryo donation. I started my second out of four medications today. I know a lot of people are praying. I am anxious about returning from the West Coast with some wonderful news. I am hoping my body does not fail me. We have been working on this embryo donation since last March.

My mother was one of five girls. Sadly, only two are left. One aunt ended up adopting children since her husband could not father children. As you have read in other blogs, my biological father had not wanted children. I was offered to my aunt many times by him. I wasn’t a bad teenager. I wanted college and I had good grades. When he left, I gave up in high school and barely graduated. My mother never officially divorced him. I even encourage her to date, but she would never do that. She died more faithfully to him until she died. She never broke one marriage vow. My mother died that way. You make a promise and you keep it. My brother and sister told my aunt my father has died. I am not finding any information to support this at all. When my fertility journey ends, I will look into this further. I am not ready to know this right now. No matter what he did. He is my father and I love him.

I am very close to this aunt. For someone who never had her own children, all of us respond to her. She came to daughter’s party. A few weeks ago, she told me that she knew the reason that I was going out to the West Coast. When I attempted to deny it, it was like a teenager being caught again. Yes, even at my age 40, my aunt has a powerful presence in the family. I called her today. Last week on my daughter’s birthday was her mammogram. My aunt survived colon cancer about a year ago. Her mammogram was normal. She was talking about knitting baby sweaters for me. All of sudden, I got scared. What if I don’t end up pregnant or I miscarry. She is asking me repeatedly, so will we know before Thanksgiving. My body has a way of telling me before the scheduled pregnancy test that it didn’t happen. She is leaving for Florida to celebrate her great granddaughter’s birthday. The day before she comes back, our plane leaves for the West Coast.

Sadly, my other aunt, who still works full time in her late 70’s was diagnosed with breast cancer this year. Her breast cancer tumor was just removed. This Friday is my turn with the mammogram machine. Thanks to health insurance, it is considered a routine mammogram due to my age. Every year, I was told the results before I left the hospital because women under 40 have diagnostic mammograms. This year, I will be given the answer in days. Since I was 36 years old and diagnosed with breast cancer on my first mammogram, this is my next task. A mammogram is scary for me because of my history. I don’t plan to leave without trying to get the results.

I have some excellent friends in life. I know my husband wanted to be there, but he can’t do to his new job. A friend is coming with me. My plan for Friday is go to Boston and have my mammogram. Go spend time in Boston with my friend and to have a wonderful time after the mammogram. I am planning to visit my aunt on the way back.

The Grief of Mothers Unites Us

I don’t know how families handled the lost of their child (ren) in the days before the internet. I have connection to some friends, who have lost their child due to the same rare disease. A few years ago after cancer treatment, I took a trip that I wanted too. We went to the Connecticut office of NORD (National Organization For Rare Diseases). I just wanted to be there. A place where it was okay to be a mother who lost two children from rare disease. I always thought I would burst into tears at the doors, but I didn’t. They asked if there was anything we needed. I just needed to be in the doors of a place that I felt less isolated. I wanted everyone in the family to know we weren’t the “only ones.” In the outside world, the isolation is reality.

I spent so much of my life having rare events impact my life and my soul. When I hear of another family and another loss, I find myself grieving. So I was cleaning the computer/playroom today and thinking of the lost of our last daughter, who died from the same disease. The room is decorated in clouds, moons and stars. It has been waiting for her for almost 6 years now. The baby never came home she died a week before Thanksgiving. The nursery was never completed. The room has been waiting forever for the precious little one… After my second child died, I became very depressed. I would lie around all weekend in PJ’s and wouldn’t get up for months afterwards. I had no energy to repaint the room. Then, the breast cancer came. I had no energy. Lucky, I was able to work full time and take care of a kindergartener. My living daughter asked today, when are you going to update this room. Today, the thought crossed my mind in a wave of creativity. Someday, this room will be completed, when I am ready!