Category Archives: #motherhood

Briers For My 7th Breast Cancer Anniversary

Our family has been facing some medical issues recently.  I took a break from remodeling.  Sadly, my schedule on days off have been very booked.  The family ferret has insulinoma (caner of the pancreas).  She has required multiple trips to the vet to check her sugar levels.  My oldest daughter has been having dizzy spells.  I feel like a cab.

Since the family vacation in April, I found a lump on the top of my ear near the skin connecting to my head.  It has seriously hurt, when I wear glasses.  I thought this is a cyst.  For weeks now, I have been trying a number of home remedies to get rid of it.

I had surgery to remove a number of polyps from my uterus in February.  I was having heavy bleeding and 21 day cycles.  Last week, the heavy bleeding returned.  I got up and left stains everywhere.  So, I called the OB GYN.  They made an appointment for this week.

On the same afternoon, my phone rings again. My daughter’s doctor office called with a neurology appointment for Tuesday, which is the same day as my OB GYN appointment.  This neurology appointment is in the morning.  The OB GYN appointment is in the afternoon.  Both are hour drives in the opposite direction.  I thought no problem.

Monday was my physical.  I had been suffering with the bump on my ear for awhile.  I had to take the youngest with me, since my husband took Tuesday morning to go to my oldest daughter’s appointment.  I showed him my ear.  He felt a Ears, Nose and Throat Specialist should look at it.  He was concerned about skin cancer and if it should be biopsy.  Cancer again?

My toddler fell asleep on the drive home.  I sat in the driveway in disbelief.  My phone rings again.  The specialist can see me mid morning on Tuesday.  I felt so emotional drained.  Yes, I do have my girls and my husband.  There is just no family involved in our lives.  There isn’t an aunt or a grandmother to call for help with the kids.  It’s in these situations, I feel very isolated and alone.  (My last C-section erupted with an argument with my in-laws about who was going to take care of my oldest.  I actually mentally prepared to go into a C-section by myself with no support.) I couldn’t ask them for help.  I spoke to a few friends about the lump on my ear.  It made me feel slightly better.

Worst of all, I have been working Monday and Tuesday nights at my other job.   The neurology appointment for my daughter made me anxious.  I buried two babies due to a rare disease.  There was another part of me that knew this was routine.  My recent surgery on the polyps reminded me how alone I am.  I am running all over the place.  I got my glasses tighten.  Hope, my oldest, was anxious about the state exams and the neurologist appointment.  I promise to take her to one of her activity stores.  I spoke to my medical oncologist, who said I couldn’t have a hormonal IUD for cycle control due to my previous history of breast cancer.  Some of the IUD’s can thin and make a cycle quicker.  We also talked about my ear.

Tuesday morning at the neurologist appointment, it was a bit of a rough start.  I am staring at this genetic history form and I am tired, drained and overwhelmed.  I am telling her it’s not a good day to ask me if I am in good physical health.  Another cancer diagnosis my happen again.  Finally, I said, “I am struggling with this form.  Our family is the first documented genetic carriers of a rare disease.”  The person, we met with softened.  All sudden, I felt she got it.  Basically, Hope was diagnosis with Vertigo.  They want us to see a Ears, Nose and Throat Specialist to rule out allergies.  One appointment down. My husband asked to work from home to cover all these doctor appointments.  My toddler is very active.  He takes Hope to school.

I call my aunt, who is 80 something.  She sounds horrible and wheezy due to a cold.  I go to check on her.  I meet the Ears, Nose and Throat Specialist and explain all the appointments I am going through.  She was very understanding.  She told me that the lump looks like a cyst, but it should be biopsy.  She explained if it is cancer or not cancer, it needs to be removed only.  More good news.

I decide to drive home and drop by to see the toddler after eating lunch at my favorite bakery from my childhood memories.  I am wiped out.  I figure I better update the school nurse.  She says to me, “your daughter landed wrong on stage. She is here now.” Now, I know I have to take this kid to the walk in clinic after school.  My ear starts throbbing bad from the biopsy.

The OB GYN appointment was okay.  There is little they can do to control this bleeding.  I leave and I go to check out.  There is a couple sitting down talking with check out.  I go up to the other window a few times.  No one comes.  So, I give them their space.  All of sudden, a medical receptionist screams at me, “is someone hiding in the hall.”

So, I corrected her.  I told her, ” I am not hiding.  I have been at the window twice and no one is paying attention.” It’s been a miserable day.  I hate doctors.  I am at the end of my rope.  My ear is really throbbing.  No painkiller is touching it. When the receptionist is checking me out, I am telling her to retell me the information.   I called my boss and asked to go in to complete my work and leave early.  She agrees.  I can’t miss work since I have no vacation or sick time.

I can’t go to another doctor.  I just can’t.  So, I called my husband and told him to take the oldest to the doctor’s.  I got good news mostly.  I felt so emotionally drained today.  My oldest has a groin injury and she can not walk.  I spent half the night finding other things for our family to do this Memorial Day Weekend that require no walking.

I have come a long way since starting this blog.  I stopped complaining and I am doing things to improve my life.  I am making friends.  I am aware I can’t discuss my baby loss issues with them either.  I tried to get out once a month with my friends to take care of myself.

It was the Friday before Memorial Day that I was diagnosis with breast cancer.  It brought new meaning to LONG WEEKEND.  Today, I finally told my oldest what is going on with the ear.  It was so hard this morning because she was in so much pain and I work during the days Wednesdays through Fridays.  Even if I could stay home, she would have missed the state exams.  She had to go to school.  My ear just throbbed today due to the biopsy.  I am hoping for better days.  I am also taking this as a warning sign to take better care of myself such as count my steps, quit smoking and sleep right.

Disappointment

We are a month away from school ending.  My daughter is going to middle school.  There will be no afterschool care.  She goes to school in another town without public transportation to our city.  I have been working hard with both part time jobs with the total of 4 different programs to develop a working schedule to match her school schedule.  I had hoped to move this summer as well to a new house.  Our current house is way better.  I am keeping that promise to bring this little house to life again for my daughters.

I got so tired of painting the house that I have stopped.  My oldest goes to dance competitions.  Her last one is this weekend.  We decided we don’t have enough money to update the powdery pink bathroom that screams of the decade that I was born in.  I had so many hopes.  My oldest is 11 years old.  We live in the 100 US most violent cities.  I don’t think she is ready to stay home all day.

This year, I found a daycare for my youngest in September, which follows the school year.  Last year, we hired a babysitter, who my oldest knows because she works at the girl’s school.  I decided to pay the babysitter more to watch both girls for the summer. I promised an amount of money.  I did the math.  I would be left with $60 every pay period.  So, the woman is kind enough, we agreed to a different set amount of money.  I am embarrassed that I can’t pay her the way I want.  The amount leaves me with $200 every pay period.  So, I have to pick up some extra half shifts.  All that hard work to have another baby and I can’t spend the time with the girls that I want.  I will survive this.  Hopefully, next year will be different.

August is their birthday parties. I am not sure what this one will be like.  Last year there was a lot of no shows or regrets.  I have been buying gifts now and putting it away.

Last week, I was anxious in my own skin.  I don’t take care of myself the way I said I would after my surgery in February.  I do not sleep well.  Sometimes, it’s to get stuff done.  I am going back to counting steps and changing my diet.  I actually want to stop drinking coffee.  I want to quit smoking.  I have been experiencing disappointment.  The extra half a shift is only for the summer.  The girls are getting older and I know child care will get easier.  My oldest is in a hard age group.  She is not quite ready to stay home 10 hours a day alone.

My body has been telling me bad news.  I had long 21 day bleeding cycles with 2 days of extremely hard bleeding.  They found polyps and removed them.  There has been some success.  My bleeding cycles are 11 days long.  Unfortunately, I overflowed twice at work at both jobs.  It was embarrassing.  Thankfully, I don’t think anyone noticed.  I had to reach out to my OB GYN again.  I see her next month.  I am worried the polyps came back.  It’s also anniversary time of my breast cancer diagnosis.  My body is busy making cysts looking small bumps to make me worry.  I need to talk to my doctors and I will.

 

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.

#NIAW2017 Our story: The Journey of Hope & Joy

I am going to write a letter of thanks to women and men, who are donors.  Before I do, I am going to write a brief summary of our journey.  Fourteen years ago, we decided it was time for a family.  Before being pregnant, I glowed.  The year before we tried, I made sure everything was done.  I visited churches looking for the perfect family church.  I made sure I was healthy.  I brought baby items.  It was time for a baby.  I was so naïve at my precious age of 28.  I thought couples had sex and you just got pregnant.  I completely knew nothing of ovulation and timing.  It was disappointing the first month, we tried.  Nothing.  So, I read online how to get pregnant.  I got ovulation kits and within one month, boom we were pregnant.  At 9 weeks, I had a threatened miscarriage.  I woke up bleeding.  My husband and I headed hysterical to the ER.  The baby was okay.  We made it to the traditional 12 week mark and made the big announcement.  I say this with tears we were so innocent.  At the 18 week ultra sound, we were joking around and laughing.  We were play arguing about if we should learn the baby’s gender.  We were so excited.  The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married.  Life was great!

The ultra sound tech didn’t say much.  We were in a good mood.  After the ultra sound, I remarked to my husband, we didn’t get a picture.  The doctor called us in.  I said, “we never got a picture.”

The doctor looked grim. “The baby has multiple birth defects.  I don’t think the baby is going to live long enough to reach birth.” She said.

I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces.  I remember falling and the doctor catching me to make sure my head didn’t hit the counter.  We were left through a back door to an immediate appointment in Boston.  I couldn’t stop crying and calling people.  We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator.  At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for.  I begged them at the hospital to tell me that the baby just had Down Syndrome.  I had an amniocentesis test.  I asked them for a picture of the baby.

I came home.  My husband asked if we should cancel the trip.  I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations.  I couldn’t talk or breath.  I spent all my money (our cell phones did not work.) on the payphone trying to learn news.  The stress was so high.  We went to the wax museum.  One of the rides took our picture.  In the picture, it was a couple with broken hearts.  I never brought the picture.  I refused to have my picture taken the entire trip.   I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.

Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses.   I was born a rare disease mother.  People voiced their opinions about what we should do.  Our baby was becoming  was becoming a symbol for others about arguments for social issues instead of our baby and our choice.  She was born prematurely.   Avery died a day after birth.  I had never witness a human die.  I felt strong guilt for agreeing to do not resuscitate orders.  I never doubt there was a God.  As I watched Avery struggle for each breathe.  I became obsessed with is there an afterlife? I began to doubt God.  Many friends ended their friendships with us.  I think I hang out with a lot of emotional abusive people.  My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”

I had flash backs.  I finally left my job because they couldn’t get that I couldn’t be around babies.  I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention.  So on my last day of work, I did a very brave thing.  Someone brought in a baby.  I asked to hold it.  The memories were flooding me.  I held my composure.  The second, I was out of their sight.  I bite down on my fingers and sobbed wildly.  I kept trying to get pregnant over and over.  One negative pregnancy test after another.  I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature.  Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition.  Since neither of us had dwarfism or seemed to have dwarfism.  The other way was either my husband  or I had a genetic problem with sperm or eggs.  I was jobless and babyless.  At times, I told my husband that I no longer wanted to work in the field that I loved.  Thanksgiving day, I kneeled before Avery’s grave and begged for help.  I was no longer with the children that worked with and loved.  My Avery died.  My uterus was empty.  So, I kept applying for jobs in and outside my field.  I was going to a fertility center for tests.  Then, on December 1st, 2004, I learned I was pregnant.  My mother-in-law and I wrapped the test as a birthday present for my husband.  I started a new job.  Being pregnant again was not easy.  I played loud happy music to keep my anxiety down.  On August 11th, 2005, our daughter Hope was born.  I didn’t know if she was a boy or girl.  We stopped asking the gender question and gave thanks for a healthy child.

My brother and sister disappeared from my life.  They are very emotional abusive.  My sister was hiding her own pregnancy.  She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies.  We don’t want genetically inferior babies in the world.”

I learned quickly that I couldn’t continue a relationship with my siblings.  It raised my anxiety.  So I let them go.  Weeks before Hope’s birth, they came back.  I was so positive.  Sadly, we hired the wrong medical team for our daughter.  I did not know my brother had physically threaten one of the doctors, when his son  was diagnosis with Asperger’s syndrome.  This doctor was on a revenge quest.  He treated me differently when I was alone.  He was sickly sweet when my husband was around.  It ended up being a blow up.  My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor.  Would you not know they were affiliated with that other practice.  I considered walking away from my husband and child thinking I was the problem.  I could go to doctor appointments alone.  Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors.  Hope is a straight A and beautiful young lady.  She has a new doctor team and there is no problems.  Sadly, my niece around Hope’s age was born to my sister has several developmental delays.

I could write a book.  I was so convinced our losses were over.  When Hope was 11 months old, I decided to have another baby.  My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family.  I got pregnant.  One nap time, Hope’s cross fell and broke in half.  I felt a strong urge to go to the bathroom.  I was bleeding.  I had a natural miscarriage at 6 weeks.  We tried again at New Year’s time.  The baby was developing normal.  At the 18 weeks ultra sound, I was told the baby had no heart beat.  It was my son Haven, who we could never hold.  He had died silently at 16 weeks.

I began to not tell anyone.  We ended back at the fertility specialist for recurrent pregnancy loss.  We had another genetic consult and we were given the same information.  They couldn’t find any problems.  There was a fade theory about MFTHR genes causing blood clots.  I went on Folic Acid and blood thinners.  I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again.  It was Christmas time and at 11 weeks, I was told the ultra sound was normal.  A few days before Christmas, there was no heart beat at 13 weeks.  The baby was estimated to have died days after the 11 weeks ultrasound.  I had a D&C two days before Christmas.  We were heart broken.  Everyone was celebrating the holidays, my husband and I were in tears.  The doctor offices were closed.

Shortly after Christmas, I was crying and shoveling the snow off my car.  I heard a kitten crying.  It was 2007.  Lots of people were loosing their homes.  I called out to the kitten, it came to me.  I showed my husband.  We agreed to try to locate the owners later.  My neighbor informed us that the cat was abandoned due to a foreclosure.  We agreed to give the cat a home until an adoptive family could be found.  The cat had a huge abscess on his neck.  New Year’s Eve, I found myself in a vet clinic getting this poor animal help.  I explained we were considering adopting a child and we would care for the cat until a new home could be found.  I spent my New Year’s playing nurse with this cat, who was recovering from surgery.  Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born.  My energy went into finding the cat a home.  A manger at the pet store agreed to adopt the cat.  I was explaining to my 2 years old that the kitten found a home.  She looked at me and said, “my cat!”

I called the manager at the pet store and apologized.  We kept the cat.  He was an all black cat with a white heart on his chest.  My baby’s name was Haven, who died at 18 weeks.  For weeks, we didn’t know if it was a boy or a girl.  I named him Haven because it was a unisex name.  I thought of him safely with his sister.  We named the cat Raven, who by the way absolutely flies through the house to snuggle me.  He is all muscle.  When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh.  Trust me, he loves to walk all over you.

For months, I couldn’t get pregnant again.  My husband’s sperm count and quality was low.  We were told we need IVF-ICIS.  (They shoot the sperm into an egg.) The year was 2009, it was tough financial times.  My husband’s bank was sold.  The health insurance covered IVF because it was in a mandatory state for infertility coverage.  However, the pharmacy insurance came from a state without coverage.  It was getting hard to have childcare for Hope for doctor appointments.  I decided to return to work full time, because we needed to pay for the medication out of pocket.  I felt it would be quick and I would have another baby.  So, we finally paid $3000 for the medication through taxes.  Everything look so positive.  I ended up not pregnant.  I didn’t even have enough meds for another cycle.  My husband sperm count returned to normal.  I was crying so hard.  Months of work for no baby.  We began to try again on our own.

On our 10th wedding anniversary, I was very upset and angry.  I learned I was pregnant again.  I was terrified.  All the tests were normal.  At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work.  The doctor returned and told us that the baby had multiple birth defects.  The night mare happened again.  We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper.  One morning, there was no heart beat.  I was induced the week before Thanksgiving.  I lost my job later that year.  Lucky for me, a previous employer hired me.  Avery’s blood in 2004 was flown to Germany to confirm her diagnosis.  The United States had open a lab.

The geneticist recommended we both get tested.  My test was negative.  It was thought that two recessive genes could cause Campomelic Dysplasia.  We decided to start trying in-home inseminations with donor sperm.  At this time, our health insurance was in another state without mandatory coverage.  We tried one cycle.  I began to notice blood on my bra.  I thought a milk duct infection due to Addison’s still birth.

The doctors discovered a lump in my breast.  It became clear that there was a great chance of breast cancer.  The Friday before Memorial Day, I was told I had breast cancer.  No insurance will cover the cost of fertility preservation.  Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation.  My husband’s blood work was lost.  On the day I had my lymph nodes removed for breast cancer, he had his blood drawn.  I started chemo.  The doctors agreed to let me try to use Lupron to save my ovaries.  It put me into medical menopause.  I had chemo and medical menopause.  I was able to work full time mostly.  Two weeks after chemo was started, the test results came back.  We were the first case in the world to be documented with one genetic carrier.  I could have used my eggs.  It was too late.

My mother died half way into chemo from natural causes.  I found her dead.  I brought a bib that said my mother is a breast cancer survivor.  I wanted to hold on to my dream of another baby.  In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother.  I would bring the bib to every cancer treatment.  I would cry into the bib.  Somehow someway, I was going to be a mother.  My relationship with my in-laws fell apart.  My sister-in-law declined my offer to be a surrogate mother, which I understood.  During Hope’s 5th birthday party, I learned she had a baby named Maddison.  The names sound so similar.  After breast cancer treatment, I began to have anxiety attacks.  The thought would just enter my head, my daughter died.  I also had flash backs of Addison’s death and my mother’s death.  An old obsession resurfaced.  Is there a God and afterlife.  Six months later, I tried to go back to fertility treatment.  I was told to wait for a year.

I started buying donor sperm through a bank and tried to inseminate myself at home.  Finally enough time elapsed, so I could return to fertility treatment.  The two IUI’s failed.  We tried 3 rounds of IVF.  My husband only accepted job offers with companies who we checked out their health insurance.  In March 2014, I failed my last IVF cycle with my eggs and donor sperm.  We had been looking into all options for egg donation.  Please note either egg or sperm donation is covered in any state.  I started looking into options out of state.  In my home state, it was $50,000.  I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation.  Please note this is not left over IVF embryos.  I began to fly out.  I had to keep everything hush, hush.  It was rumored that I was moving to the West Coast by friends and family.

The first cycle failed.  I tried a fresh cycle, which wasn’t easy.  IVF is hard for us.  We have to come up with excuses.  It was really hard to explain why I had to just pack up and fly out.  On August 25, 2015, I had gave birth to my daughter Joy.  She is a beautiful classic toddler.  Infertility was 13 years of my life.  I don’t miss the silent tears of a failed cycle.  I don’t miss googling if standing on my head will make me pregnant.  I don’t miss trying to stand on my head.

I stayed in the field that I loved.  I was able to return to working with children.  I have a specialization in substance abuse counseling.  My job is mom first.  I have been able to find jobs to work around my children’s schedules.

I don’t forgot my journey.  I try to be available to other families with rare diseases.  I tell my story.  Not for pity.  I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease.  I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now.  I don’t want other couples to be the first in the world.  I am mostly agnostic now.  I have trying to catch up on building friendships and making my own family.  I accept my family and in-laws as they are.  I also believe I am the captain of my soul.  I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease.  I also try to advocate for cancer patients.  Most of all, I am mom first.

 

Today is my Birthday…

In 2009, the unthinkable happened.  We buried another child due to Campomelic Dysplasia.  We become the first medically documented case of genetic Campomelic Dysplasia.  I was loosing my job.  I was able to find another job.  Six months after my daughter died, I was diagnosis with breast cancer.  I had just got another job through a previous employer.  Half way through chemo, my mother and cat died.  I had to get a new car the same year.  A number of appliances had to be replaced.  I worked and my daughter went to kindergarten.  We went to all her activities.  I wore my wig.   The day after I finished chemo and radiation, our ferret died due to cancer.

For many years afterwards, I ignored my home.  I spent my weekday off from work driving our daughter Hope to school.  I would come home and lay in bed until it was time to pick her up.  I no longer cared about the home or housework.  My soul was empty.  As the years passed, it look like we were going to be the couple who never brought home a child from infertility treatment.  My last cycle failed in March with my own eggs.  A friend who helped me so much during my cancer treatment and inspired me died from cancer.  Another friend relapsed, he took his own life two weeks before my big 40th birthday.  My favorite cats died within three weeks of each other due to stomach cancer before and after my birthday.  I painted a smile on my face.  My world was uncertain.  There was the possibility of another child through embryo donation on the West Coast.  I struggled with coming to terms that this child could not be conceived by my egg or my husband’s sperm.

When the embryo donation worked, my youngest was born.  In pregnancy, I realized how much my depression caused our home to become a shack.  I couldn’t fix it.  My oldest grew up in a shack.  Where are you Ellen?  The million dollar miracle child came home to a “shack.”  I promised my children that I would make this old house into a beautiful home for them.  For about a year now, we have been working hard to fix this house.  I am trying to paint the living room.  We are into problems.  Today, I am not painting.  Last year, I cried daily until my birthday.  On my birthday, the oven went causing a stream of electrical problems.  I thought about this.  My father was very abusive.  He never wanted me and he verbalized it.  I am sure my friend who took his own life would not have wanted to not become the meaning of my birthday.  Through it all, I am alive.  I am grateful for my life.

Although, I have done some things that I need to come to terms with, this year, I am not crying.  At some point, I stopped getting angry and crying.  At some point, I realized I need to give myself a life that I wanted.  So, I stopped looking for my family to step up, I took the wheel.  Some would say, I took the car way off the road.  I am coming to terms with myself.  Where are we going next?

This year, I am not staying home to see who calls, who posts on  facebook  or if the oven goes again for another year.  This year, I am enjoying my children.  I have a whole day of errands and activities.  After all those years of hard work to have my children, my best birthday gift is with them!

Everything I Learned About Life: Rare Disease Day

I wanted to honor today as Rare Disease Day.  I do not proclaim to be perfect but learning.  My husband cut his thumb, while painting our daughter’s bedroom.  In that moment everything was happening according to plan.  Then disaster struck.  My perfect day with my oldest daughter got twisted.  He could not continue to work.  He needed 5 stitches.  Yesterday, I did not feel well.  I tried to fix this.  The room was suppose to be done on her last day of school vacation.  We set up a temporary sleeping situation.  My oldest struggle to sleep or get her clothing.  I did what I could.

I thought over the film project.  I stayed late at work, while a co-worker helped.  At midnight last night, I started to paint.  The ceiling roller broke in half.  Paint spilled on the floor.  At 4AM it was done.   Our family is the first document case known of passing this awful disease, which took 2 of our children’s lives.  I miscarried multiple times, who know how many were really effected.  I am not going to tell you that we didn’t feel angry or shut down.  Somehow, we had to make a choice.  It was hope or despair.  Life is not perfect.  This morning I was so over tired and sick that Joy missed her first gymnastics class.  This has been a journey of learning to “roll with the punches” and learning when to punch back.  Hopefully, I am developing wisdom on choices of the 2.

My hope is someday to hear someone say, “Ms. C., if Avery and Addison were born today, their lives would be different.  They may have been alive.  Families now can get genetic counseling and mental health services to deal with the genetic information.  Families now don’t have to wait for a loss.  They can seek services before conception and make choices.”

Genes are not all we are made of.  Everyone deserves medical care!  Today, I am make through the day, because we are relatively healthy, except for the cold.  This a lot to be thankful for.

Semitemental Value

Last night, my heart was cut into a million pieces.  I have come from a tough background.  Last night threw me over the edge.  My birth/marriage family has basically been emotional cold.  Since Joy’s birth, I have been trying to get to a state of acceptance, move on and rebuild.

The surgery went okay on Friday.  I don’t have too much information because the doctor came and I was out.  My husband was called so all I know is Polyps were found and removed.   I don’t know how many etc..  We had to leave at 5AM.  The girls fell asleep.  I woke up with a head cold.  So, I just went anyways.  I asked him to stay with me in case the hospital decided not to do the surgery.  I got a bunch of snappy answers.  My head clicked and I said forget this now.  Our former marriage therapist told me he may be some underlining issues that I need to understand.    I have not shared that back.  I am trying to accept and adjust.  He apologized and all.  I just brushed off.  Let the show go on, I will take care of myself!

I get to the waiting room.  It’s packed with people and their family.  I tried to bottle up my feelings of sadness.  When I had breast cancer, those feelings of isolation resurface.  My in-laws have my name, email address and number.  My well wishes went to his cell phone not mine this time.  Which brings me back to another matter.  I find in this electronic age, my own sister will dictate messages through my aunt.  I address this again.  Auntie, the woman is almost 50 years old, let her call me directly.  A few weeks ago, I called her directly because they was a shooting at a popular teen spot.  In the middle of the frenzy, we didn’t know if anyone was shot or killed.  I called to check on my nieces and nephew.  No one was killed thankfully during the incident just shots.

Maybe it was the combination of my first daughter’s birthday/death anniversary, the fact it was called a “D&C” and the fight I had, I cried hard in the waiting room.  I resented the procedure being called a D&C.  I had been through a combination of 3 D&E/D&C.   Emotions were raw.  I was in and out to the bathroom trying so hard to bottle it up.  It didn’t happen.  I squeezed out one last call to my daughter’s cell phone.  I learned the girls went home and fell asleep.  They pregnancy tested me.  I felt myself even through we are officially done daydreaming about conception.  Oh well, it didn’t happen.

Friday, no pain.  A string of messages perked me up.  It was odd to be home and child free.  Even the cold behaved, maybe I wasn’t really sick.  Saturday, the day was a mess.  My husband needs to manage Joy, our toddler.  I can’t pick her up right now.  Joy extends her arms.  I don’t know how much she does understand.  So, I tried to explain.  I sit down.  Joy go get a book. I will snuggle you and love you that way.  Joy is a persistent little person.  No, I want my mommy.

Saturday, raw anger was boiling.  I wanted to finish that movie about the angels of our rare disease for Rare Disease Day.  Hope practiced Twinkle Twinkle Little Star for weeks on her flute.  Her bedroom is a mess, because we are trying to paint it.  He is sick.  I am sick. Hope is not feeling well.  We went back and fourth trying to finish this movie.  I posted a rough draft up.  I was thanked by the one mother who submitted anything.  Hope made slime and covered the kitchen.  The cramps came and I found myself in a squat position with preteen upset with her failed slime project.  Thankfully, my purse is well stock.  I went to the basement room because I was ready to tear her apart.

Then, came this critique  about the movie from a friend about the music and text.  I was having serious cramps and my nose is burning.  So, I practice a type of coping skill, which is like putting the ball back in her court politely.  Okay, you have these ideas, so help me fix it.  I watched the wording.  Of course the answer was “I can’t do these things.”  She texted me with an apology.  For a month now, I have been trying to pull this off with little invested interest from the group.  Again, I watched how I said this, but this one hurt.  I have been there for years.  I sent her messages when she was pregnant with her baby who didn’t make it and during her subsequent pregnancy, which was a healthy girl.  I was heated.  I sent a message explaining these things.  I accepted her apology.  You know she was one of those messages after the surgery.  So, we are good today.  She is still my friend.  All fixed.  It was a very thin line because I wanted to loose my cool.  The answer is we are all living beings.  To use old 12 step wisdom, I was a proud member of Ala-Anon for many years.  I am grew up into a substance abuse counselor.  “It’s about progress, not perfection.” The more I live. The more I understand, you need to be flexible in life.  Perfection is something for TV show.   In the real world those perfect plans are not always realistic.

Next year, just one movie for Avery and Addison.  (Period the end.)  I am done with my co-dependent slip.  I am feeling better today.  I hope we finish painting Hope’s room.  Funny enough, she wanted this different color.  I braced for it, because the room was originally painted for Avery’s nursery.  It ended up, it’s the same color.  It was a string of communication errors.  One could say it was like the angel Avery just said no to Hope’s color choice.  My husband has hearing loss.  I am still trying to adjust.  He swears I told him to buy the paint last week.  What I really said was for Hope to think about it.  He just saw something circle and brought it.  Hope is saying it’s okay.  It may be a few years before the house is sold. Let’s end it with, it’s about progress not perfection!

 

 

Disappointed, Stress, Overwhelmed & Grateful

On the second, anniversary of my first daughter birthday/death, I was holding my new born rainbow as a storm of betrayal was brewing.  Maria, a dear neighborhood friend died after a long illness with cancer.  I had hired what I thought was a good bunch of people to care for my daughter Hope.  My brother hid his son’s autism and I did not know that his anger was directed at some of the people I hired to care for my daughter.  Tomorrow is a horrible anniversary of one of those care givers breaking down and physical intimidating  both my daughter and I.  I had no idea of the demon I had hired.  I was exhausted from learning about Maria’s death.  He told me what he thought of me and my family.  He made me feel threatened for my daughter’s safety and mine.  Somehow, we made it out.  I reached out to others afterwards.  Finally, I decided to fire all the caregivers.  I learned an important lesson that day.  When your gut tells you something is wrong, listening to it.  Instead, I was so caught up in everyone else liking this person that I missed my soul was telling me that this person was evil.

For months later, my mind was taunted by the incident.  I couldn’t sleep or eat.  It was the hardest lesson, I ever learned.  After that incident, I avoid routine appointments during the month of February unless it is urgent matter.  It’s going on 13 years this year, Avery, my first daughter, was born with a rare disease and died a day after birth.  Some years are emotional charged. Others I make it through.  We used to get together with my in-laws and go out to eat to acknowledge Avery’s birth/death.  We haven’t done that in years.  I find comfort in participating in Rare Disease Month, which is February.  I find comfort in doing something special with our family.  Sometimes, we go to a museum.  Sometimes, we go to a restaurant for a night out.

I am having surgery again.   The last ultra sound showed uterine polyps.  I am trying to fix the house, we are in the third phase of remodeling.  (I am sorry to tell you there is most likely going to be a forth, fifth phase then more.)  Things unexpected are going wrong.  We owe taxes.  I can’t meet my own deadlines.  I promise myself not to stay up all night.  Last week was a series of disasters.  Joy, our toddler had a high fever.  Hope, the oldest found a lump in her hand.  It was a cyst.  It was a long night at the doctor’s.  The cyst went away.  We had snow days.  The original blog for this was saved as a draft, but I couldn’t find it. So, I am starting over again

I brought a tablet to catch up on work.  It doesn’t support my work program.  I ran late trying to get the tablet to work.  I was suppose to go to a mediation class.  After an hour’s drive, I was late and the door was locked.  I was in the cold.  So, I went Valentine’s Day and drove back home.  I never got to paint another room.  The refrigerator needed to be cleaned out months ago and it smelled like it.  Then Hope, my preteen daughter got sick.  Another snow day.  I couldn’t cancel with the OB GYN.  My husband had to come home again.  We got up late today.  I couldn’t get the kids out on time.  I got a bunch of angry looks from the receptionist for bring my oldest daughter sick to the pre-op appointment.   They made her wear a mask.  I was spoken to for her not having it on right in front of the waiting room.  We were a half an hour late.  I just get so overwhelmed.  All the rooms in the house need to be repainted.

My husband and I have decided not to sell the house this year.  We still owe a lot of money for Joy’s conception through embryo donation on the West Coast.  It makes sense to lower the bills and try to move.

Yesterday was the ultimate disappointment.  I was looking forward to ending the heavy 21 day cycles.  Sometimes, I am running to the bathroom to avoid an accident.  The surgery was the key so I thought. My doctor tells me the surgery will lighten it for a while.  My uterus is inflamed, which happens sometimes after birth.  The heavy cycles will continue.  I was so depressed.  I don’t run.  I live my life around cycles still even after infertility.

Today, I am just so overwhelmed between the surgery and the house.  I called out tonight.  Surviving what I have has taught me, I am having a difficult time right now. Let’s give thanks.  No one in the family is in active cancer treatment.  My children are in relatively good health other than the stomach bug or cold.  The house drives me nuts, but there is a roof over my head with walls to paint and rooms to declutter.  I am hoping this surgery works.  I am a behind in my schedule with the house.  I am going out this weekend for myself. We are going out to eat next week and going to a local museum.  Then, I have to work on the #rare disease movie with the other mothers about loosing a child with Campomelic Dysplasia. Now that the cyst is gone.  Hope can play her flute again, so I can record the song for the movie.

 

 

What I Have Done:

The holidays were crazy days.  My agenda was so full.  I am still doing stuff I said I would do over vacation.  My mammogram was normal. (Thank God!) It was a crazy day.  I went from the craziness of the holidays to working the night before my mammogram.  I woke to a bad morning.  I love my glasses, but the frame is so light colored. I can’t seem to find them a lot or I drop them.   I get out of the shower to discover my glasses missing.  I half stepped on them, which bent the frame.  Oh wonderful from holidays to back to work to mammogram morning.

The day couldn’t get much worst, when at the hospital, I discovered my wallet missing.  I was I.D.less.  Panic stricken, I kept going to every parking garage except the one, my husband parked at.  I learned I had an appointment at 10AM for the breast surgeon.  I am 150% anxiety now.  What else could go wrong?  Two people joking with a Firefighter that a drill was planned for today.  Not before my mammogram.

(Oddly enough, when I was having radiation treatment at a different hospital about 7 years.  During one treatment, the fire alarm for the hospital sounded.  I was told to hold still because it wasn’t our area that needed to be evacuated.  Someone made the joke that someone had brunt toast on the maternity ward.  I held myself together.  I went out to the car and I sobbed horribly.  I should be the one burning the toast in the maternity ward.  My baby Addison had just born still about a year before.  Here I was fighting breast cancer instead.  When Joy, my daughter was born 4 years later.  I kept refusing to let any member of my family use the toaster on the maternity ward. )

I have the hardest time with mammogram day.  Somehow, my anxiety is always out of control.  The hospital worked with me.  I had to call the school and tell them I was late.  My oldest was sent to aftercare.  My anxiety was Hope remembers when mom had breast cancer.  Her ABC’s in kindergarten was different from other kids.  A is for my Angel baby sister Addison and my Angel Nana.  Both had just died.  B was for Breast Cancer, my mom is fighting.  C is for Chemo, my mother has no hair.   Hope knew it was mammogram day.  I was scared that she would get frightened about a bad test result.  Here I am anxiety high plus trying to explain this to the school.  This made my anxiety higher.  The delays were caused by me.  Everything worked out in the end.  I finally found the right garage and my wallet was on the floor of the car.

The relator got the stomach bug and canceled during vacation.  So we rescheduled for mammogram day. I worked the night before the mammogram and I thought I would have time to clean it up quick before she came.  My husband dropped me off at the house.  I quickly walked to dog and I cleaned the stove.  I decided not to cancel.  The entire month either she canceled or we did.  It is what it is!  So, the quote was lower than expected.  After all the cleaning and reorganizing last year, I heard reorganize and repaint all the rooms.  We are waiting for our taxes to see how we are going to proceed.  The chimney needs repair.  Bricks are close to coming out.  We need a new cellar door.  The kitchen needs new counter tops and the bathroom needs a new tub enclosure.  I was schedule to work that night.  Just last year, I stayed up all night to clean up the mold.  I would sleep for a few hours, then Hope needed to go to school.  I would stay up all day and care for Joy.  Those were my three days a week off.  There was no complaining or back up.  That was my life from April to June.  We had a serious health issue brewing in the house.  I did it for my kids and pets.  I have kept my promise to myself.  NEVER AGAIN!  I still can’t seem to sleep all night.

I kept my promise to myself to not let myself be worn out.  I cut down my hours at part time job number 2.  I rescheduled myself from one weekend day to Mondays and Tuesdays evenings.  If I am going to be working so is everyone else!   So, last weekend in the middle of a major snow storm, we started phase 3 of remodeling the house.  It’s not clear if it will sell or not.  We are not sure if we can afford the mortgage in the town next door.  There is a huge price gap between our crime ridden city, which is on the top 100 violent cities in America and that town next door, which is 3rd in the state for one the best towns to live in.  Honestly, I don’t know if I belong there.  I can’t seem to connect to others.  Hope says people ignore her at the school.  I am not sure if we will end up there.  Hope wants to graduate there.  She can live anywhere in the state and continue to attend the school through the program of School Choice.  The only agreement is we need to be willing to drive her.

I have also been on other social media accounts exploring other parts of my life.  Sometimes spending too much time on it.   I don’t want to discuss it.  My decision has been made.  Life is not “perfect.” I don’t live in daily active cancer treatment.  No one died in this family from a rare disease today.  This is about still picking up the pieces and determining what is best for the family.  The house is way better than the day Joy came home from the hospital.  I am hoping for us to move this year.  Hopefully to a new joyful place for our family to live.

 

Drawing Boundaries: Happy Holidays

It’s been a crazy month of me working 6 days a week sometimes around my oldest daughter Hope’s activity schedule.  Yesterday was Christmas Eve.  The last Christmas light went up and I uttered a judgmental thought to myself, “like wait until Christmas Eve.” Last week, I worked 6 days to get Christmas Eve and Christmas off.  I was profoundly mentally drained and I couldn’t get out of my own way.   I am married, but my inlaws went their own way a few years ago.  It was strange there for a long time.  They felt I should….  just be happy with this one child.  They uttered to me that I seemed “overwhelmed at one.”  This occurred when I hired a bunch of inappropriate people to care for Hope, who had an axe to grind with my brother.  I did not know what my brother or my sister had done, but the people I hired took it out on me.  Yes, damn it I was overwhelmed.  I thought I hired people, who would care for my precious Hope, who was born after our first Avery died.  I had no idea what a mess of revenge I got myself caught into.  I had really hard time trusting anyone anymore.   It took years to fix it.  Anyways, we failed at delivering a another baby.  My sister-in-law was having one every year.  My mother had dementia.  I was told that I could have one day a week.  When his sister had kids, they gave her 7 days per week.  All this is old news.

I began to separate.  Years past, it became apparent Hope was being hurt by the division as if I divorced.  So this year, I past the olive branch again.  I invited them over for lunch on Christmas Eve. It’s not that I am hoping to get close again.  My mother-in-law has a non-cancerous tumor in her brain.  I am pretty sure it effects her personality now.    I came home after working 6 days straight to find the house trashed.  I was brunt already.  Saying something does nothing.  Lately, I have been working towards removing personal responsibility.  Example: Why is it always the woman’s problem?  Example, I no longer become this fire breathing monster.  I simply say now this is a reflection of you and not me.  After all, you didn’t know we were having guests?  Last year, when the mold was discovered in my house we had a health issue.  For months, I took care of the baby during the day and worked all night cleaning.  I slept for a few hours to drive the oldest to school.  We are talking about painting the interior.  I am clear with someone.  Look mold one thing, but don’t expect this all the time.  I have struggle with insomnia.  My OB GYN told me the length of my cycles are being influence by stress and sleep deprivation.  We didn’t have money for a cleaning company.  It was done room by room by me.  All I learned was never again.

Friday, I got the stomach flu with chills.  I barely made it through work.  My husband got let out early so he got the kids.  It was a struggle to walk the dog.  My body wanted to sleep so bad.  I slept from 5PM to 4AM on Christmas Eve.  The fever was still there.  I took an Advil and I did the best I could.  At the end not everything got done.  We didn’t tell my inlaws because they are germphobic. We did not tell them that I was sick.  Financial I said look, you know these are hard times during the year for us.  Let’s be proactive instead of spending it up and going dry.  Time to save for the holidays all year long.  Every August our daughters will have birthdays.  Put money aside instead playing catch up.

It was a nice time.  Hope went into high gear to help no fights.  We put the dog in the cellar.    The dog barks a lot, except when in the cellar.  My mother-in-law lost a portion of her hearing due to that non-cancerous tumor.  My father-in-law asks about the dog where about and walks into the cellar without asking.  He didn’t say it to me, but he says to my husband, “you need a dumpster to get rid of the stuff down there.  My husband tells me this.  I say to him that I think it is odd to go into someone’s cellar without asking.  I pointed out I wouldn’t do that to my mother.

Maybe, I sound cold.  I am tired of having a major stroke about this house, when visitors come.  Surely, I solely responsible?  I don’t drink beer so I am to be responsible for the beer cans all over the floor.  It’s a new way of thinking.  Don’t want to listen to me.  Let it be a reflection on you.  We have a relator coming Friday to assess the value of the house.  It’s not clear if we can afford to move.  I am not breaking into a sweat for the house to look perfect.  I am not the only one living here.

I drove home one night writing this beautiful letter in my head about why to come home to someone.  I was going to write it.  Buy a special gift and give it to him on Christmas.  I thought it over.  How many times do you need to beg?  The division amongst us was like a slow leaking damn.  No one gave a damn until the damn broke.  Everyone saw it coming, but decided not to stop it.  It happened slowly until the damn broke.  Where to go now?

Remember previous holidays, one Christmas, I had a miscarriage and a D&E two days before Christmas.  Another one, our daughter had just been born still a week before Thanksgiving.  One Christmas in cancer treatment.  It was the first one without mom.  Years pasting, where are you baby?  Will I never get pregnant again?  Will it always be the would’ve(s) and could’ve(s).  It been stressful watching the damn break.  It stressful because of what I want doesn’t quite match the right way and needs of the children.  The aftermath is good and bad days.  I am no longer taking sole responsibility because I am female.  I am spending this vacation with my girls.  I am not saying I am healed completely.  I would not give anything to return to those previous holidays.  I will continue with my meditation classes and seeking outside friendships.  May I say the biggest improvement of the year is the house is no longer a shack.  I hope we continue to grow and heal as a family.  I am going to work on going to be on time.  My OB GYN is having tests.  Hopefully, things go back to normal.