Category Archives: infertility

These Past Few Months…

Writing allows my sanity to flow.  My toddler daughter reminds me how much zest for life we have as small children.  I see pictures of me  at twenty-five year old in a wedding grown.  I believed.  My innocence was taken away, when I learned the baby I was carrying was to die from an awful disease.  My first born had a bell shaped rib cage that refused to let her lungs expand.  I watched her die.  Then, it was the words of others that confused me.  I didn’t care about the social issues.  It was what I felt I needed to do for her and our family.  Then, when a miracle occurred and second one was born, the rug was torn from under the feet of my soul.  I chose bad caregivers with their own agenda to care for her without knowing.  For months, I cried at the level of betrayal.  I learned from that day forward to trust my own gut instinct.  The innocence of a picture of me at twenty-five year old in wedding gown was torn.

When I wanted another baby, I held the silence of the losses.  One miscarriage at six weeks, 18 weeks, 13 weeks and 21 weeks.  I silenced my voice.  Then the breast cancer came and my mother died.  Quiet Ellen!  Can’t you be grateful for the one you have?  I swallowed my pain and disconnected from the world.  I am doing this!  It took 8 years.  Proof, I flew out to the West Coast a few times instant miracle. Joy, my youngest,  was born.  Please don’t take me ungrateful.

The house was covered in black mold, a newborn’s parent worst nightmare. I have gone crazy scrubbing walls at night and getting a few hours to take care of Joy.  This war with the MOLD is always going on.  Somedays, I find it ironic like the negativity in my mind.  Somehow, I got disconnected from the one person I should have been connected with.  He kept drinking.  When I looked into her eyes, I heard my mother say, “do the best you can with what you have.” The mold has mostly fell into silence except when I notice it got a another piece of Joy’s clothing.  The war continues.  Finally, I brought the most expensive dehumidifier ever after a long battle about buying it.  My oldest has migraines now.   It seems puberty related. This morning, I notice, yep another cute shirt gone due to mold. Writing saves my life.

I am trying to reconnect with others. I don’t know if everyone will ever come back who were lost in my quest to have another baby.

As for the mold, I started reaching out to a family friend for help in the construction business.  That exclusive all expensive dehumidifier wouldn’t run continuously for the dumbest reason ever.  The company coils the drain hose.  I order another one.  Same thing again.  The family friend picks up because the company has coiled the drain hose, it’s causing kinks.  He drills a hole in the wood board holding the dehumidifier and puts a cooper tube in to hold the hose straight.  It WORKS!  Meanwhile, I struggling to find the time to load the old one in my car to return it.

I found myself struggling with the schedule of two jobs.  I have to pick up the kids by 3PM.  My daughter was picked to go to school in another town.  Middle school has no afterschool.  There is no public transportation.  I have to stop working and get the kids.  Then, I wait home until 6PM.  I am out to another job.  I noticed my toddler seems extremely impulsive.  She doesn’t like to be alone.  She hates shoes and gloves.  She bolts.  She has almost ran into the street several times.  She won’t eat bread.  It takes a half an hour to dress her in the morning, because she fights with you so much.  I do love her very much.  I very concerned about her behavior.  She is hitting every child at daycare.  Right before Christmas, she ran from the daycare teacher at the library and almost ran into the parking lot.

I started blaming myself because I haven’t had the same amount of time for her as the first.  When I last specialized in children, I learned about sensory disorders.   I don’t know much about them.   I am so concerned about her running into her death because she was hit by a car.  Her behavior is beyond the average toddler.  I made a decision to have Early Intervention look at her because she is like a space ship on continuous warp speed.  I am not worried about autism because that kid loves people.

In the past few months, I have been sleeping right.  I can’t seem to sleep after working at night.  One job is constantly under staff.  I have left at midnight due to it a few times.  Then, I struggle to get up to fight with the toddler to get dress.  My oldest is having anxiety about being late for school.  I have missed many showers.  I tried everything with my schedule.  When I was asked to take on an additional placement at my main job, I agreed as long as I can work additional hours on Sunday.   How does a toddler almost get out to the parking lot of a library? I started looking at other daycares.  All the childcare providers that my oldest had are retiring.  I feel like I am starting over.  Somedays, I very overwhelmed by child care for Joy.  She is in a family daycare that runs on the school schedule.  I started having chest pains last October.  I can’t get to the doctors because I have to wait for my husband to come home.  When Joy comes, I constantly correcting her.  It’s suicide watch 24/7.  My husband actually brunt his vacation days up so I get my trainings done for my license renewal.  I never wait until last second.  Two jobs and a mold war is all I am going to say.  I love her so much.  At 10AM on my days off, it feels like midnight.

I went for a stress test.  I warned the person that I wasn’t going to make my 3PM pick up time a week in advanced.  I am telling her I need a stress test.  So the morning of, she says see you at 3PM.  I told her again.  The daycare closes at 3:30, but she makes us tell her an exact pick up time.  I had to wait two weeks due to trainings, her jury duty and early release days for my oldest.  The test was at 2:15PM.  It was 2:35.  I said something.  The woman looks at me and says, “let’s reschedule it.”  It’s an act of congress for everything.  I am lucky to shower in the morning.  I said look I want to know the results.  They did the condense version.  I had an asthma attack.  You would think all that running after Joy would count as working out.  I bolted from the appointment.  I ran down to the daycare.  Her dog escapes and I am trying so hard to help. (The dog was saved.)   She bolts in the car with one of her kids and leaves.  She talking about Christmas shopping.  I ran out of time.  Christmas Eve, I discovered I ran out of wrapping paper.

I had to do extra hours at both jobs to cover Christmas, New Year’s and two days off. I travel for a living.  It’s a real struggle to make sure I am there at 3 every day.  I have no vacation time because I am part time.  I have to train weekly for a month to submit the paperwork to get my professional license.  We have 2 years to get the trainings done.  I had to cancel or not go due to all the problems at home.  (Side story, one training I was doing on my own lost accreditation.  I had to scramble to find new ones fast.) It was done.  It’s not my style.

Anyways, the stress test was normal because I was never contacted about problems.  I got a letter in the mail my cholesterol is normal first time in 7 years.  It could mean, I am experiencing scar tissue pain from the breast cancer treatment or anxiety attacks.  This is my thoughts on it.

When I looked at that baby day one, I realized how much resentment I was carrying due to the lack of help from other family members with my oldest.  Constantly resenting it does NOTHING!  I promised myself and her that I wasn’t waiting for a caped figure to rescue me.  I am putting that cape on myself.  I am Ellen hear me roar!

I brought the woman at daycare a gift.  She was obvious that she was upset there was no holiday bonus. Of course she is closed Christmas break.  We saved a lot of money switching daycare to her place.  So, I had it.  I found something that takes the pressure off me a lot.  I found a drop in daycare center!  You buy hours and schedule days. I also toured another daycare.  Joy was not prompted.  She sat down in every class and participated.  I am pretty sure she has an impulse problem.  She is blowing out of her dance class.  Her behavior is like the Tasmanian Devil.  Listen, my gut says something is wrong.  I am going to do the right thing here.  Maybe Early Intervention will tell me that I am crazy.  If she needs help, let’s start now before she flunks kindergarten.  If she needs nothing, I have peace of mind.  I am not allowed to practice my profession on my own kids.  I see some concerns.  I don’t think sitting around and wait another year will help.

I feared her return to daycare.  It was an explosion on my part.  I don’t do well with repressed anger.   The night before for eight hours to make money from taking days off.  I worked in a 50 degrees office with work for 3 people.  I apologized.  The women at daycare disagrees with me.  She thinks it’s all behavioral.  You know what there is nothing wrong with asking for help.  I lost two babies due to rare disease.  I flew in my first pregnancy to Maryland to get a second opinion.  Who am I not to ask the question?  We hired the drop in daycare. The pressure is off a little about childcare.  I need to take care of myself.

It really hurt when I went to that IVF clinic chat room and I was put on the spot.  Later, I did talk to the admin person.  It was the other admin person who did that.  I just told her I didn’t think it was the right time for us to interact with them.  I am never going back.  Listen, I fight addiction that is in recovery at home, work two jobs and I try my best.  I am also concerned because Joy’s red blood cells are small.  Her iron levels are normal. It was brought to my attention because the doctor has to worn you about everything that there is a slight possibility she could be the carrier of rare blood disease, which doesn’t effect her health, but may effect her when she goes to have children.  It could just be do to her anemia.  Let’s stop right there.  Our family broke medical history of being the first documented carrier for a different rare disease.  I heard him say slight.  I stopped him and summarized our lives in 5 minutes.  Yes, I can do that in a matter of fact way.  Sadly, it’s our reality.  Some days, I can.  Some days, I can’t.   Joy is my daughter.  I refused to look the rare blood disease.  Of course, my husband says I already did.  Sorry, I am busy looking at daycares right now and getting Early Intervention in.  I am going to keep faith again that isn’t what it seems.  I am crawling with anxiety.  Joy was conceived through embryo donation.  If her cells do not improve, I am feeling a duty to warn BIG TIME.  I did not share this with that group.  Because we don’t know.  Maybe my innocence was destroyed but why panic everyone?  It can’t happen to us…  AGAIN?  If this is the case, I will follow it up and take steps to warn the professionals.   I am not sitting on that.

I also did not feel ready to learn if Joy had genetic donor siblings.  I am not hiding the information from her.  It may someday put my relationship and her sister’s relationship in stress with her.  I don’t tell everyone about donor conception because I feel that is Joy’s choice long term to decide if she wants to disclose the information.  Look what happens just choosing to make decisions that our best for my family.  I have seen the dark side of medical treatment.

As for my oldest and her migraines, I am working hard on diets and regular routines. I am in short the evil mother to a certain preteen.  She had a doctor appointment after the blinding migraine.  She needs to see an eye doctor incase there is damage.  She already had an appointment due to the school mis-documenting she wears glasses and she flunked her eye exam.  We will keep it.

My resolution?  I lived two years sleep deprived.  I miss showers greatly.   I am trying to escape a violent city.  I am trying to take better care of myself.  I need to attend Co-dependents Anonymous more.  It seems to work better than wondering if my therapist knows someone I professional know.  I tried therapy and learned she knew the doctor I worked for.  I never went back.

We have been living a crazy life to fight the mold.  Hopefully, by me not working nights, I can monitor bed times.  Maybe my menstrual cycles will turn normal.  I bleed heavy.  They last for 20 days.  Gee, do you think that impacts my mood?  I gave up coffee.  I tried to quit smoking.  I need to sleep more regularly.  Sleep deprivation is like being drunk from what I am reading.  I don’t know what this year will bring.  Hopefully, we can gut the bathroom be done with the MOLD and the other dark stuff that taunt our lives.

Forget the caped figure!  I am saving myself!  I am putting my own cape on. I need peace with the person in my life.  I do love him.  He had a sore throat and I went crazy looking for a cough drop.  Somehow, I need to accept what is or figure out what to do.  I am not 100% innocent of being a part of the problem.  I need an attitude adjustment too.   of As for my career path, I need to figure a way to make a bigger income.  About $30,000, doesn’t cover daycare.  I can’t be working 6 days straight.  It was a tough decision because neither place was a prime choice.  I chose the one with more money.   For now, I told my very long term job that I will stop working every week regularly.  I am hoping a regular sleep schedule will decrease the stress.  I hope Hope and Joy’s life improves.  My New Year’s Resolution is to keep working on healthy choices for my daughters and I.

 

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Gratitude For My M.O.M: All I Learned My Babies Taught Me

Mother’s Day is tough.  Many have lost children.  Some face infertility. Others have lost their mothers.   I am very lucky to have my children.  I have been pregnant seven times in my life.  I have two living girls.  In my twenties, I studied hard and worked hard to get a career.  Nothing in life prepare me for what was ahead.

In 2010, we learned we were the first documented case in the world for carrying a rare disease.  Nothing in the universe prepared me to hold my first born child, then end life support the next day.  I had never watched a human die before.  Months afterwards, I remembered over and over.  I became obsessed with is there an afterlife or God.  I tried to reach out to others.  My soul begged, please just hug me and love me.  People misjudged this.  I was told to get over it…  I planned my entire pregnancy.  I brought things.  I took my folic acid three months before hand. I went to the doctors.  I toured churches looking for that perfect family church.  I went to the OB GYN.  I made sure all dental work was complete.  When we learned our baby had multiple birth defects, it tore me apart.  Although not every pregnancy had a happy ending with us bringing home a baby, I appreciate and give thanks for each one.  I am forever their mom.

My first born Avery died a day after birth in our arms.  I wanted to take her place so bad.  Avery barely opened her eyes.  When we spoke to her, her head would turn and she would look for us.  I nicked named her Avery Bravery.  In my darkest moments in life, when I need to be brave, I whisper, “Avery Bravery.”

My first rainbow is 11 years old.  She gets so excited and happy.  She still happy dances.  I have so many wonderful memories.  I am filled with her love and wisdom.  At times, she says things with such great wisdom as if she is 11 going on 80.  Her name is Hope.  I love to see her dance with such gratitude and grace.  Hope fills me with Hope.  Every day, I see a young lady growing up fast.  I am honored that her care as been entrusted to me.  I am proud of her.

I wish a rainbow meant it would never happen again.  Sadly, we lost a pregnancy at 6 weeks and 13 weeks.  I love them from the moment, I tried for them.  My heart was empty.  They were mine for the time they were here.  I desperately tried and lost them.  They are apart of my being.

At 18 weeks, we lost our son Haven.  For weeks, we did not know if we lost a boy or a girl.  We had to name him something either a boy or girl could use.  Years later, unknown to me, I was gathering medical reports.  In the pathology report, it questioned if Haven had been a twin.  I found myself grieving two babies.  I could not hold him because  he had been dead over a week.  We buried a baby without knowing if it was a boy or girl.

My miscarriage at 13 weeks as previous mentioned in the blog was at Christmas time.  Shortly after Christmas, I was outside crying and shoveling snow.  I heard an animal crying horribly.  Under my neighbor’s porch was a all black kitten with a small patch in the shape of a heart on his chest.  He had an abscess on his neck.  We took this kitten in with the intention of finding a new family.  The kitten was estimated with the actual birthday of Haven’s original due date in September.  We named the cat Raven.  When I tried to give this cat away, Hope said, “my cat.”  She was 2 years old at the time.  Raven is like Tigger from Winnie the Pooh.  He gets so excited that he pounces on you.  As small as he is, he can almost knock the wind out of you.  It broke my heart, when I had breast cancer, because literally I need to put Raven in a room because he would pounce on my chest or treatment area so hard.

This leads me to my daughter Addison.  She was born still with the same rare disease that the doctor’s said it would most likely never happen again a week before Thanksgiving in 2009.  My heart broke as I watched Hope, who was 4 year old cry.  For many years afterwards, Hope took it hard when she learned someone at school became a big sister.  She asked when it was going to be our turn.

Eight years of infertility and pregnancy losses, I am happy to say it was with Joy that Joy was born.  At 20 months, she has taught me a lot.  She is not sitting in her highchair what so ever until she gives Buddy, our dog, a treat.  She is going to strap herself in.  Joy is still trying to change her own diaper.  She is independent and going to be an outstanding CEO someday as soon as we survive toddlerhood.  She is your classic toddler with a heart of gold.  Over half of my steps on my pedometer are from chasing her.  Keep reaching for that cell phone or keys, because sooner or later when no one is looking she gets them.  Set goals and reach them.  Life is adventure.

I have said this before.  Without seeing all my babies, it’s like I am a painting at a museum half covered.  If you look at my professional accomplishments only, you miss the picture.  If you see me as a breast cancer survivor only, you miss the picture.  If you only see me as the mother to my two Earth girls, you miss the picture.  You see the whole me, when you can acknowledge everything.  Without one piece, you miss the picture.   I carry my love always.  My gratitude is to be alive to see another Mother’s Day and to all my babies, who chose me to be their mom.

Pregnancy Update & An Adult’s Perspective Of Living Without A Father.

I did go to see the OB GYN yesterday.  Remind me not to work and train for 6 days straight.  My brain is fried.  Monday, I caught another cold.  This time, it was a chest cold.  Monday and Tuesday were very intense with the training on a tough subject.  It was also a challenge to be at the training to navigate food and have gestational diabetes.  My co-workers brought doughnuts as a sweet gesture forgetting I am a gestational diabetic.  None of the bathroom stalls had locks.  I went 5 minutes earlier before the break to check my blood.  Someone just opened the door on me as I dabbing blood on the test stripe.  I struggled every morning this week to wake up.  A bunch of doctor appointments so even with extra work, I will be earning a lower paying pay check.  I only get paid, when services are provided.  There is no sick time.  When I cough, I have an accident.  It’s embarrassing.  My daughter Hope was official diagnosis with walking pneumonia.  My diagnosis was chest cold.  This is the 5th cold since April, but everyone insists that I am on enough calories.  I did talk about the preterm labor fear.   Since Hope was born full term, there are no tests to run.  I just need to watch.  It’s hard when you feel you have dropped the ball once.  I finally remembered why this was uncomfortable.  My mother-in-law is very old fashion.  I remember someone taught me how to change a tire.  My mother-in-law said that wasn’t woman’s work.  My grandmother was one of the first small airplane pilots in New England.  So, when we returned from New York City and Avery died in Boston a few days later.  She was angry with me.  Considering that I barely talk to her now… this baby will be born into a different family then the one Hope was born into.

There is no closeness.  The family operates on a co-parenting level like a divorced family without the divorce.  Next weekend, I will spend the entire dance recital with my in-laws and husband.  Something was lost since our last daughter died.  The connection within the family is surface level.  The spiritual component disappeared.  The family is united by a child.  My heart has never forgiven them for choosing their Thanksgiving plans during the death of my daughter, when I asked them to take my husband and Hope.  My heart has never forgiven them for when I asked for help during the breast cancer.  I respect they are his and her relatives.  That’s it.  I am not an evil woman.  So next week will be tough.  They show up for special events and not much more.  I will keep the peace, because I love my daughter.

So tomorrow is Father’s Day, we are not close nor have we been in years.  Tomorrow there is a massive rain storm coming.  NH was CANCELED!  Strangely, Hope and I woke up together today.  An hour later, a new plan was developed.  Hope will have time with her father.   My own father is a mystery in my life.   I was born a “surprise” 6 to 7 years after my brother and sister.  I was not allowed to get sick or to feel.  My mother silently encouraged us to go to “college and get a career.”  When I was 18 years old, I was the subject of one of his sick and twisted choices from my father to my mother.  Leave with me now and we will remain married.  Choose your daughter and your marriage is over.  My mother had true bravery after years of domestic violence.  She told him to leave.  In my struggles with infertility and family who abandon me, it felt like a double edge sword.  I was never loved by my father.  I couldn’t have the children that I wanted.  I spent my childhood life swearing things were going to be different.  Sadly, my daughter was born with a rare disease.  We had to make the choice of worst nightmares.  We had to choose to end life support.  So many times, I wanted to break my own restraining order to throw in his face that he missed the one day my daughter had lived.  So many times, I want to tell him how I would given my life to save hers.  The isolation of infertility and fighting a little known rare disease reminded me of my fight to make a future for myself as a child.  I saw the waiting rooms filled with people who wanted to be a parent so bad, but couldn’t.  This man had three beautiful children.  I was college bound, when he left.  For awhile, a piece of me was at peace.  Another piece wanted to scream no that’s my father.  My grades fell.  I was accepted to college as on academic probation standing.  I turned it around in a year even after being diagnosis with thyroid cancer.  I graduated with academic honors and I was accepted to grad school.  My daughter is so lucky to have my husband as a father.  He is lucky to have her.  There is a question that remains.  Everyone reports to me my father has died.  I felt I could not fight infertility and found out he died at the same time.  No matter what he has done, he will always be my dad.  Perhaps, after the baby is born, I will go to NH and look up his death record.  I am still not ready.

It Never Quite Goes Away…

Not all of us, who experience recurrent pregnancy loss get an answer.  Many times, I thought our family would never have an answer.  My husband and I reflected that at our moment of death perhaps God would whisper the answer to us.  The testing for the rare disease our children died was available in the US.  When our first daughter died, her blood needed to be flown to another country to be tested.  Lately, I am following people somewhere in the cycle of donor conception either through considering it or waiting after acceptance into a program.  I wanted to write a blog about the reasons we choose embryo donation.  Sadly, yesterday one of the few with the information that our baby was conceived embryo donation made an immature comment that wasn’t even funny.  It was crude about sperm donation and it should not have been said.

I have been extremely anxious about watching the numbers of my sugars.  After five different losses, I worry about the health of our baby anyways.    It is not usual for me to face having a gun going off in my neighborhood.  Usually, my daughter Hope is very healthy.  For three weeks, she has had a loud cough and a headache.  The doctors think it is allergies, but allergy medications aren’t touching it.  After watching my first daughter die a day after birth, my anxiety spikes with Hope, when illness goes on and on.  My anxiety appears to double around my cancer anniversary too.  The combination of the crisis of our city facing shootings and illegal gun procession, the water crisis and everything else just got to me.

The baby is doing well.  It goes after kicking my rib cage every now and then.    So, I went to all the doctor appointments Tuesday.  All the stress came out.  I am not by any means a trained nutritionist.  I have been fighting high cholesterol for years.  I have been pregnant seven times.  Three losses in the second trimester.  I only had the glucose test for gestational diabetes only once.  I had to come back and I was screened out for having gestational diabetes.  So, I volunteered for this pregnancy in nutrition study of my own free will.  This is the first time, I was diagnosis with gestational diabetes.  I knew how to use the machine, but for weeks, I waited to see a nutritionist due to the holiday.  I had spikes and I took guesses how to treat them.  After loosing 5 pregnancies, I was upset at times the way my concerns were address.  I am really considering quitting the nutrition study.  It is getting to be too much.  As much I am grateful for this pregnancy….  I had plans for the summer.  There are things I enjoy with my daughter such as going out for ice cream/yogurt, making breakfast every Sunday morning and baking cupcakes.  I see now the world is not designed for the diabetics.

People on Tuesday made comments to me.  First, they have no idea how I have fought infertility, rare disease, breast cancer and pregnancy loss for years.  Telling me that I made bad uneducated food choices is one thing.  When  someone joking about it that I was trying to throw my baby out in a way, it was not funny.  There was a huge lack of flexibility at times dealing with me.   All you have followed me know, we had to save and plan for the embryo donation on the West Coast.  This little one represents years of struggles.  I was so angry and hurt.  I locked myself out at the mall and forgot where I parked.  I cried a lot on Tuesday.  Tuesday, I woke up at 3AM due to being over heated because I wore my jacket to bed.  My daughter had a growing pain.  I struggled to sleep, because I was hungry.  My first test in morning is fasting.  At 4 something, I just took the test.  It wasn’t a true test.  The number was high for a fasting test, but I got to eat.  I peeled my eyes open and went to work.  Last night, I feel asleep right after diner.  No one is trying to “throw this baby out.”  I am going forward now.  I am not tolerating being spoken to like that anymore.  Last night, I should have taken Hope back to the walk-in clinic.  I hate the glucose spikes.  If I did, we would have had to eat out, I just brought her new meds.  We got to eat home.  The heavy cold rain, knocked the pollen off.  Her headache is gone.  The cough remains.

Venting: Trying To Forgive….My Rainbow Speaks/The Effects Of Pregnancy Loss On A Child.

In my daughter’s life, I have had to tell her lots of bad news. One year in particular here was the news I had to tell her, the baby died, mom has breast cancer and your grandmother died. A few weeks ago this other relative made a decision beyond my decision to wait. I have been through 5 different types of pregnancy loss. I went to the ER for bleeding in the past two weeks. We had our first ultra sound with the OB GYN. I am not mentally ready or prepared to handle my daughter’s feelings too. My stress level just went from high to ultra high.

The stress in her life is high at the moment. She loved our dance school teacher, who died about a year ago from cancer. This week was the anniversary of her passing. The schools start going into full swing to prepare the students for the state exams. Our school system threw out the old test and this is the first year, my daughter will take an exam accepted by multiple states on a computer. The test known as the PARC is here. More than a few states have decided on one test. Everyone in my state will at some point make the transition. My daughter is like my sister, a perfectionist. She was awarded by the school committee a award for a perfect score on 280 math problems last year. This year she is resistive to the change. That a snap shot of the stress in the background. I never say this She has had a bad week and her behavior shows it.

She held this in for a few weeks that some relative decided to share that I was pregnant, when I had strictly told people to wait. My daughter told me this week. First, over the past five years, I have had to hold that child, while she cried about her sister being born still. There have been days, she came home with tears in her eyes because so and so found out that they are going to be a big sister/brother. I wanted to be there! I wanted to be the one to tell her! I deserved to have a part in this! Someone made a choice while I was at work. I was not asked or told. It was done. It’s brothering me. So, I had now understand what is going on. This is a piece of me that wants to say, hey where were you during the breast cancer. Try explaining chemo to a kindergartener and come and see me.

Friday night was the hardest day. I was trying to do my shot and it was not happening. I am on baby aspirin to prevent blood clots. Each attempt made a bigger mess. Finally, I deciding I am going to do this again. I have the one and half inch needle at back side. I am starting breathing exercises because it is not happening tonight too easy. It’s been a good 20 minutes. All of sudden the bathroom lights go off, because my daughter thought it would be funny. I had a strong talk with her. It was a huge safety risk. I could have seriously cut myself. It’s not an easy shot. I can’t see what I am doing. Someone lost TV, but it wasn’t for the bathroom incident alone.

Yesterday, I felt so emotional drained by the choices of others. My husband’s arm has healed finally enough to get the Christmas stuff down. (He broke his elbow in between my plane trips to the West Coast last month.) I came home and someone is watching TV, when she isn’t suppose to. She starts to cry and scream. Finally, I told her to sit down. Every day since she went back to school she has been crying. She tells me, “I am thinking about my sisters.” Then she sobs that she is scared this baby is going to die from the same rare disease as her sisters. The year before I had an embryo donation. I heard some mothers at RESOLVE talking about how they are gradually explaining egg donations to their children. I explained the baby has a male and female helper. How does one explain embryo donation to a 9 years old? It would be some serious bad luck for the same rare disease to happen again. (Statistically thinking, we were the first case in the world.) I held her tight and let her cry it out. Last night, she was herself again. I say this very cautiously this morning. I can’t. It appears the spotting is lighter than I can see or it has stopped. Resolve is going to put in contact with resources. As much as I can walk the walk, trust me in my soul, I am so anxious.

Tomorrow is my annual I see my medical oncologist appointment. I had to reschedule it due to the ultra sound. Almost 5 years now… :D!

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!

Overwhelmed! Hopefully Tomorrow Is Better!

Today was my first day back to work after the transfer.  My sleep is better after returning home.  I think the meds need the bathroom in the middle of the night.  I have not told my job that I involved in getting fertility treatment out of state.  My job thinks I have a personal matter on the West Coast due my biological father’s unconfirmed death.  I had heard some sad news about children.  Work was busy…  I left a little late to get my daughter.  All these things are stressful.  It hits me what if I have put so much of the family’s money to have infertility treatment and the pregnancy test is negative.  It’s not just the money.  There was some serious coordination and effort to getting to the West Coast for embryo donation.  I cried.

On the highway another high stressful situation for me.  There was a bad car accident on the highway.  It has been ten years since my first daughter’s death.  Sometimes, I have bad memories of her death.  It’s the same highway my ambulance went down to Boston, when she was born.  Today of all days, the memories come back.  I called the school because I am late.   They are sent my daughter to after school, because I don’t know if I can make it on time.   I am holding it together….  I took the wrong exit to my daughter’s new school, because I am so busy holding it together.

I think I have said this before.  My job situation is a catch 22.  I can design my own schedule around my daughter and infertility treatment.  The trade in is there is no benefits.  There is no sick or vacation time.  It does get me, but I love what I do.  My husband took his new job to offset my earnings.  It still brothers me that I could be earning more.

Last week while I was away for fertility treatment, I didn’t get paid.  There is a cancer walk coming up for my dance school teacher, who inspired me during my cancer treatment.  I can’t go because I may be pregnant.  My daughter wants to go.  The lowest donation minimum for a child is $100.  The lowest adult donation minimum is $300.  The coordinator is telling me that no one will supervise my daughter during the walk and my husband needs to register.   In all these fund raisers, my husband and I pay for our living daughter.  Maybe it’s just the hormones or did I really just send an email telling off the coordinator?  Yep, I did. Boy did that feel great!  So, I am laughing.  I guess assertiveness training for me consists of estrogen patches and progesterone suppositories!   I have felt the decrease in caffeine yet.  I wonder if I am just in hormonal up swing!

One Victory: Fertility Journey

Embryo Donation has been quite a journey. Only 5 and half weeks to embryos transfer. Both my husband and I have been working hard at what to tell workplaces, outsiders and schools. Then there is everything else. My husband gets a new job because his old job was not willing to let him go. My introduction to the new insurance company was a thrilling series of phone calls. Even through, customer service told me that they wouldn’t be, the medications were covered. We were able to choose a different fertility pharmacy closer to home! I should finish one med tomorrow night. Friday all the additional ones are coming. Last night, I had to ask for my regular doctor’s help with the ultra sound due next week. When I did that on the phone, I closed my eyes tight. The thought crossed my head he is going to say no. He didn’t. We came up with a game plan.

The alone trip for the embryo donation feels like a video game with stages. We haven’t made the trip yet! No more drama before the take off please. All I want to hear is the engines firing up and feel the plane take off. Then, I want the family to safely arrive on the West Coast and return home. Between the two dates that I am at the clinic, I am planning some fun stuff for us to do. This is our family vacation! Hopefully the trip will give us an additional family members in womb storage! We asked for two embryos to be transferred. The remaining construction of these miracle children will hopefully be completed in New England. I plan to tell these embryos our home is like the movie Frozen. Every time it snows school is canceled. The west coast has no snow that why you want to come home to the east coast.

My cholesterol levels did not change with medication, diet and exercise. My body is saying to me this journey is more stressful than I admit. There is nothing that can be done at this point. Cholesterol pills are dangerous in pregnancy. My last cycle with my own eggs I had several asthma attacks and I was really sick. I got a cold this week. Better now then on my daughter’s birthday or during the week of the transfer.

Where Has 11 Years Gone? Fertility Journey

My living daughter’s birthday is a time of great excitement and celebration. Sadly, my own family outside of my husband and daughter is not so loving. They are outright, emotional cruel. So, yesterday, my heart broke again. Nothing makes me prouder than my living daughter. For me, her birthday is a symbol. I can’t stand my own birthday. I have no idea what miracle occurred to bring her life to the universe. You would think at 40 years old, I would know enough not to take it to heart, when my family once again says we aren’t coming. Last night, my mind was so angry. I tossed and turned.

My life was changed forever as a teenager. I told the family secrets to a few friends. They took me to Alateen. When you look at resilient people, you will find through research that people need supports to bounce back from trauma. These people are lifelines. Supportive people are the strength and courage to tell the individual what is happening is wrong. So, my heart is grateful to my Alateen sponsors, the other kids, teachers, my mother and my paternal grandparents. The love they gave me reaffirmed there was more to life.

I was looking at all the pictures of our living daughter from being a newborn to now. I was crying with tears of joy and gratitude for her life. As a teen ager, I was going to college, getting career and having a family. I was going to change the world. Then, our family buried my first daughter.

I had no reason to think I was infertile. First cycle, it didn’t happen. I brought an ovulation test and boom we were pregnant. Laughing! I didn’t know what ovulation was back then. I told the whole world! Just 29 years old, it was like boarding the Titanic. Our baby had multiple birth defects. They thought the baby would be born still. My husband and I prayed. I prayed on the way to work, meetings and with my husband. Sadly, our first daughter struggled to stay alive for 33 hours. She was in so much pain. With a sad heart, we decided to end life support. My husband and I wrapped our arms around her and she died within an hour and a half. My shoes were lost in her birthing process. I was wheeled out in February with just form slippers from the hospital to get home.

My family did not support my decision to bring her life into the world. We kept trying to get pregnant after genetic counseling. It was not happening. So, I sought an RE and I had a normal fertility assessment. On December 1st, I was late. I refused to use pregnancy test until this point, but the indicators were there. I am laughing here. I brought a pregnancy test and found out I was pregnant in a public restroom. My mother-in-law and I wrapped the test as an early birthday present for my husband. This is our living daughter. It was a very anxious pregnancy. The genetic counseling at this time said our first daughter had died from a fluke of nature disorder. My family showed up to the maternity ward, when my daughter was born healthy. Thankfully, I had my husband, church and a few internet friends to get through the pregnancy?

Funny side story, I was shaking and crying during the second trimester ultra sound. The doctor came in and began to tell me the baby looked normal. At the end, I realized I didn’t ask for a picture. The doctor was looking at the ultra sound screen and he began to laugh. My living daughter was waving her hand as if to say goodbye at the end. She was an intelligent kid even in utero. I don’t know what moon dust or miracle she is from but she is an awesome kid!

My family just showed up at the maternity ward without months of communication. There was strong disagreement about her being raised to know she had an older sister. My family did their usual seize and control routine through doctors or talking with my husband. It got to the point, I removed a couple doctors from caring for our family and daughter. I looked at that little face and I ended it with my family. She wasn’t going to endure being told that she was not important.

When she was eleven months, we decided to try again. At 6 weeks of pregnancy, my daughter was napping. Her glass cross fell off the wall and shattered. I discovered that day I was bleeding. I naturally miscarried. We waited and tried again. I got through 12 weeks. Whew! One of the early ultra sounds, they thought they were two. At 16 weeks, I was carrying a healthy baby. At 18 weeks, the baby had no heart beat. There were placenta problems and the cord was too long. There were indications of a possible blood clot. The pathologist questioned if there was disappearing twin due to the test results.

So, we went to the RE where I had the fertility testing. All recurrent pregnancy loss testing was normal. I was put on blood thinners as a trial. I graduated from the beta tests with flying colors. RE handed my care to the OB GYN. So a few days before Christmas at 13 weeks of pregnancy, the baby had no heart beat. At this point, I stopped telling the family when I was pregnant. I had a D&E. When my living daughter napped, I would cry. At this point, I did not tell others that we miscarried again. I kept it quiet. I would secretly cry, when others weren’t around.

God has a strange sense of humor. So, shortly after Christmas and the D&E, I was cleaning the snow my car off. This was during the time a lot of house loans were going bad. The economy had turned. I am crying about my loss and getting ready for work. I hear this meowing. I found this little kitten. So, I figured it got out of the house and someone will be looking for it. I’ll show this precious kitten to my husband to cheer him up. We tried to find the family. A neighbor identified the cat as a stray. Okay, we will just keep it until we find a home. He was really sick due to an abscess. His birthday date was estimated around one of my due dates from a miscarriage. We kept the cat and named him Raven. Raven is now 7 years old and we are his family. My living daughter, who was 2 years old at the time told me, “my cat!”

For eighteen months, no pregnancy. Back to the RE’s, more fertility assessments and genetic consults. I had an infection. My husband’s results showed male infertility. The answer was IVF with ICIS. When they shoot the sperm into an egg in a lab. We live in a mandatory state for fertility insurance. The pharmacy coverage was from another state without mandatory fertility insurance. They refused to pay for the medication.

I was working part time on weekends and my husband worked during the week so someone was home with our daughter. We couldn’t afford the cost of the meds. So, with a heavy heart, I decided to return to work full time and enroll our living daughter in daycare. She was three years old.

So, we saved and saved. Finally, we got enough money for the ICIS IVF medications. The cycle was going well. We were all positive. It was a negative pregnancy test. My RE encouraged us to keep trying between cycles. That’s when we got pregnant with our last daughter. Sadly, she had multiple birth defects from the same rare disease. They lost her heartbeat a week before Thanksgiving. Our care went to a geneticist. We were being told that we may never know the cause. Part of the genetic test was lost. We were told the doctors didn’t understand the reason the rare disease happen again. We were going to try a different approach. I was diagnosis with breast cancer.

We were told that we may never know the cause of our children’s deaths. I was told about my options for fertility preservation, which was not covered by insurance. I read and read. My medical oncologist was willing to try to put me into medical menopause to see if it would protect my ovaries from the effects of chemo. We knew it was experimental, but we couldn’t afford the other options. Two weeks into chemo, it was discovered that our family broke medical history. Unknown to us, one of us were carrying the gene for the rare disease. There were ways to have a baby, but I did not go through a stimulation cycle to preserve fertility.

The first year out of cancer treatment, no one would put in fertility treatment. Two years later, we tried IUIs without success. My periods came back. I found the cycles shorter. I most likely would have not known before hand, except remember I was charting my fertility cycle before cancer treatment. Enough time had passed and we started IVF. The difference was noticeable. Before chemo, I had 13 mature eggs. Now, I had 5 mature eggs with one embryo transfers. The quality was poor. Last year, our RE talked to us about egg donation. As I have said before no one could have predicted our family would break medical history. I tried all types of supplements to make those eggs better, acupuncture and stress tapes. I turned 40 last year. My old RE said this is a matter of age. Chemo added insult to injury. I cried hard and started looking into embryo donation and egg donation. Embryo donation makes sense to us, because either of us can genetically parent another child.

A person asked about adoption to me again recently. We don’t want to go this route for personal reasons. We looked into it. We talked about it. It is not the route for us. Someday, when I retire, I want to become a foster parent. It wasn’t the road we want now.

Last night, I decided to tell an old friend the truth about the route we chose Please pray because one of most dearest friends in the world, I sent her an email explaining we were going embryo donation. I don’t know if she is going to accept this. She had adopted her daughter in the 90’s and it was an amazing journey. I am afraid she may never speak to me ever again. Infertility treatment is always changing with options. Someday, our story may have been different if it happened 20 years in the future.

I remain in contact with the rare disease community. When I was diagnosed with breast cancer, I made a vow to my daughters who died to become a social advocate for the advancement of treatment of all rare diseases. As time is going on, we know we are not the only ones carrying this disorder dominantly. I don’t wish this on anyone. There is a peace to knowing we aren’t the ONLY ONES. Infertility is an isolating disease. Rare disease can be an isolating disease. Being diagnosed with breast cancer before age 40 years old can be an isolating disease. I am excited about flying out to have the transfer in September. Excited and anxious!

Today Feels Strange and Rainbow Memories:

Today, would have been the day I boarded a plane to Maryland. The California trip is hard to explain to outsiders. I have already had to explained the trip to a few outsiders like my daughter new principal at her new school. If the original coordinator had been up front with me, I would have never made a promise to my daughter. I thought this was going to occur over the summer, the school year summer.

I have had some interesting conversations with family members. My 79 years old Aunt was talking about how she is going to Florida to see her son, grandson and great grandson. I told her I was heading out to California in September. My mother raised us close to her sisters. (My father’s family is scattered all over the country, so we were not that close. Last week, I went to Plymouth. My paternal grandparents had a cranberry bog and business there. I still have no idea how they ended up in the state. Both of them are buried out in PA, so visiting the old house is the closest I have to visiting a cemetery.)

My aunt says to me, “good luck and bring home a baby.” (We asked for two embryo transfers so it may be babies.) I didn’t think she knew. There is only a hand full of people who know. No one has any way of contacting her.

I said, “what?” She explained she knows what I am up to. So, I started denying it like a teen. Auntie knows me too well. I had stop talking about fertility treatment with the family about 2 cycles ago. I guess at 40 years old she knows when I up to something.

The second interesting conversation occurred with my daughter. What makes a family a family? It was a long conversation. As she is growing older, you can have this types of philosophical conversations with her.

Today, she is having her first sleep over at a friend’s house. My husband is shocked that agreed to it. Well, the friend’s mother called me. I felt like saying you answer the phone for now on. Tonight, we are going out for a bit to celebrate our 15th wedding anniversary, which we didn’t do last week. The profile match coming last week was like a anniversary gift.

So many vacations have been spent at a doctor’s office. I hope in some point in our lives that vacations really become vacations.

I got referrals to high risk OBGYN’s. I am going to try to choose a high risk OBGYN now and see if I can meet the person. I have questions to ask from a medical stand point about being 40 years old and a breast cancer survivor. I have never been pregnant and a breast cancer survivor. I am bringing home baby or babies, from California, I need the reassurance there is a doctor out here. My husband works closer Boston now. I work near the Rhode Island border. I have learned a lot from my previous pregnancies. My living daughter was born near Boston. Back then I worked near the Rhode Island border. It was really hard to be anxious and drive in the traffic. So this time, I am choosing someone close to work and a easier drive from home.

Rainbow girl (our living daughter) is turning 9 years old next month. I had a C-section with her. When our first daughter was born dying from a rare disease, I choose my C-section to try to save her. Thankfully I did because unknown to all us, I had a placenta abruption in progress. I didn’t need any other treatment because the C-section stopped it.

I was very careful about preterm labor with my living daughter’s pregnancy, since I was transported by ambulance to Boston, when our first daughter was born at 31 weeks. Our first daughter was almost born in New York City. We just came home.

All this anxiety about preterm labor with the rainbow girl and I had to have a planned C-section because I was going late. Ironic? We never left the state with our living daughter’s pregnancy. Our living daughter didn’t want to leave the womb. True story: no contractions and no signs of labor coming. They shut off the stress test 5 mins before the C-section. The nurse tells me that I had my first contraction then I was wheeled in to the OR. So, I was able to schedule my C-section on my paternal grandfather’s birthday. My daughter has my grandfather’s birthday. The child never wants to wake up in the morning by the way… We love her anyways!