Tag Archives: breast cancer

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.



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.

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!

Moving On: Where To Next?

I wiped off the disappointment of recent events.  It became a moment of introspect.  What does this all mean?  I decided to reach out for help.  I made a pitched again.  Asking him to change his ways.  I was ready to see it wouldn’t happen.  This time, he followed through to my shock.  I have ben patching that empty space in my heart with the wrong type of patch.  When the patch is removed the hole is bigger.  Again, I see these for what they are.

Our family not move as planned.  The transition to middle school for my oldest is only 3 months away.  After the cancer, the death of my daughter Addison  and the death of my mother, I let my house fall into ruin.  I laid in bed and didn’t care.  At first, it was to recover from cancer treatment.  It became a habit on my one day off during the week, I would drop my oldest off to school and pull the covers over my head.  I never missed picking her up.  I waited for anyone to say something.  No one said nothing.  The year of us learning we needed embryo donation, I began to fix up the place.  Unfortunately the damage was done.  The once great house of great dreams became a ruined shack.  As my pregnancy progress, I realized the damage was down.  I owe both my daughters an apology.  It caused an air quality control issue.  Here I was with the newborn I had always wanted only to clean the mess of my decision.  We are putting some serious work into this house, it is becoming great again.  Sadly, we can not move due the outstanding bill we owe to conceive this miracle baby, my youngest.

It is looking like it is getting to much for me to have two part time jobs. I barely earned enough to pay for my oldest to go to summer camp.  It came out of the refund.  It held my job for the summer.  Add the cost of daycare.  Last year, I brought home $20 per week.  My husband and I have been talking about me working around my oldest schedule.  I have since the day Joy was born struggled to find an appropriate home day, which would save us so much money.  Our toddler is in a day center.  Every week, there is something else with them.  They stopped giving her juice now even through I pack it.  Last year, they were loosing expensive bottles she needed for her acid reflux.   So, I am still checking out home daycares.  I am considering pulling her and hiring a babysitter for both kids.

Usually, I cry from Avery’s birthday (the first daughter I lost) to my birthday.  This year, I am so busy…  What time to think about it?  So, this year, I am celebrating my birthday.  Life is about change.  Here is my birthday resolutions: Stop negative behavior that impacts my health i.e. smoking and drinking coffee.  The polyps in the uterus were called WARNING SHOTS!  Good morning, breast cancer survivor!  Forget cancer happens?  Two, I am a worth while person.  I do not need to accept unacceptable behavior.  It’s okay to make waves!  Set boundaries!  Say it in a way that is respectful and treats the other person as a living being with dignity.

Life throws curve balls. Thanks to the surgery.  I am sleeping again.  Hopefully, we will see if my cycle returns to normal.  Last night, my oldest sprains her foot and keeps dancing.  (It’s a mild sprain.) I was overdue to blood work anyways so the whole car load of us went to the doctors.  I was suppose to have the living room half painted and done.  The color needs multiple coats.  I am behind again.  That’s life. I don’t have any big philosophic things to say.  I am going to say as said in 12 step programs, “easy does it.”

7 Years Ago Today Addison became An Angel


I look at this picture of Addison and my heart is filled with love.  Today is the 7th anniversary of Addison becoming an angel.  She was born quietly into the world.  I started this post and I must have lost everything written before.  There were many losses in my life from 2009 to 2010.  A piece of my heart stands still on her lost.  It holds her in quiet vigil.  Who would she be today?  My mind wanders.  Our family’s hearts broke.  Sadly, we did not know we were carriers of this rare disease called Campomelic Dysplasia.  We went to all the doctor appointments and prayed.  What do you say to the first family?  No one knew or predicted this.  Sweet Addison….. We love you…

Please join me in a prayer for her.  Please let them find more answers for all the rare diseases.  Please let awareness spread on how sad infertility and recurrent pregnancy loss is.  Please allow families to grieve as they need.  I hope families with children with rare disease as shown love and compassion.  Please let us find an answer to cancer.  May Addison’s parents (My husband and I) continue to grow.   May we find peace with our extended families.   May her sisters on Earth become who they are intended to b.  May they dreams come true.  May Addison hears us utter her name today and may she know that she is loved.  May the babies I could not bring home know all them are loved forever.  Amen!

PS- I had to work today.  We will be going out as a family to celebrate her life after work.

Summer is Over (Unofficially)

I dropped my daughter Hope off this morning for her first day of sixth grade.  She went back with braces.  Immediately, she was greeted by friends.  I held my breath, when they noticed the braces.  I breath again when one of them said, “Cool!”  Hope is no longer in pain all the time.  It was really hard on me to see this for awhile.  Last year the former 6th graders freaked out the 5th graders by telling them that they will eat worms on the week long overnight trip to a camp to learn about science.  They did an awesome job freaking them out.  I meant to get gummy worms for her last day of 5th grade.  I was too busy with the house.  I had a package to give her.  Unknown to me, they put the spacers in and  the gummy worms are a no no with braces.  I thought about it and thought about it.  This morning, I gave her the gummy worms with a big hug.  Welcome to 6th grade.  Before she said, ” Mom I can’t have this.”  I told her I was going to cut them up and see if I could melt them down in the mini crock pot as a science experiment.  Maybe we can make drinks for you.  She smile and giggled.

It was a long summer of fighting the mold in the house.  I have been able to get the lingering odor by the cellar door to decrease.  Somedays, it’s gone.  The truth test will be after the winter.  It was crazy of me to stay up all hours of the night to clean, I was worried about the family’s health.  The house is not in sell-able shape.  The outdoors need vinyl siding.  I need to paint indoors to a more neutral color.  What is going to really hurt is painting over the murals on Joy’s bedroom wall.  Hope’s handprints made the rainbow.  My husband and I used our hands to make the sun.  Hope at times says to me, “I don’t want to move.” I have people I talk to.  This house was 17 years of our lives.  The other night, another reminder of why we need to move.  I heard a helicopter over head and saw two police cars with lights.  I said to Buddy, our dog.  “Sorry, I don’t think we are safe outside.” I do love aspects of our city.  I can’t stand looking over my shoulder and trying to figure out if that is a state police helicopter over head.  With the mass shootings, I am aware moving the kids doesn’t mean it will never happen somewhere else.  Just last year as school was getting out, two residents of my city were firing at each other in the gas station around the school in that beautiful town Hope was chosen for.

Joy’s birthday at the bowling alley was an irony in itself.  I texted people, who said they were going.  Here is what made me so angry.  Eight no shows.   Two additional people late canceled the night before.  I was right 10 to 15 people.  My cousin who needs services decided to leave shortly after being there.  I was trying to reach out to him.  My husband was so angry.  On Joy’s birthday, I woke up at 5 AM with anger.  I am the type of person, who follows through.  One was the daycare owner and her family.  I kind of sent an are you okay message.  I was told she “forgot.” Funny, the other day, you said you were going.  My husband’s god daughter and her child, no showed.  My friend at work who I paid for the floor, no showed.  All these people were texted a few days prior.  Listen, I didn’t approach the subject with all of them.  Someone started a conversation with me and I told the person, I didn’t even notice you didn’t brother to come.  I am starting to hold people personally accountable a lot more for their actions or no actions with me.  It was embarrassing to pay the bowling alley so much money and then ask them to pay us back.   They knew and I swear whatever the excuse, it was embarrassing to hear my husband.  The bowling alley refund us no questions.  I have had insomnia all summer long due to screwing up my own sleep schedule.

Here is the irony.  One of my friends is facing another cancer diagnosis.  She was  there.  A friend who had turned his life around and was there.  He brought the kids a video game card.  A friend we made through Hope’s activities touched me.  Two $25 checks, one in my honor to the cancer organization.  The other check was written in honor of my children who died from rare disease.  I cried when I saw their names not in my hand writing, because there is no greater honor for a bereave mother to have someone else acknowledge the life of their child.

We also have an old oatmeal can where we collect change.  The change is turned into money and donated in memory of our children.  We call it the Angel Fund.

I finally reached out to my OB about the insomnia.  I started decreasing my caffeine intake.  It worked beautifully except the fire alarm went off at 3AM the day after Joy’s birthday.  Our dog has been suffering with some type of GI problems all month.  He really got sick at 5AM on Saturday.  We sent him to the vet’s and he is on meds and special food.  W expect a full recovery.  It was caused by my husband switching his diet quickly.    Sunday, I got 8 1/2 hours.  Then I went back to 7 hours on Monday.  Last night I was up for two hours in the middle of the night.  I suspect I have  the warning signs menopause due to the chemo.

Joy keeps looking like today I am going to walk, but she hasn’t yet.  She had a good physical.  We talked about weaning her from formula and the bottles.  Doctor agrees with me about her not needing toddler formula at all.  They did blood work today.  I didn’t want to do it yesterday with her sister there.  She barely cried.

My husband and I are going to start getting involved more now.  We have lost 3 friendships per year since our first daughter died.  Time to move one and trying to bring old ones back to life.

I need to also go back to Co-Dependents Anonymous to get support.  I keep putting it off.

Accepting Myself As Different: Upcoming Birthday

Over the weekend, I disclosed a major family secret to one of Joy’s godmothers about how my brother-in-law when my sister was pregnant became verbally abusive.  My sister got married and she accidentally became pregnant too soon.  My brother-in-law had all those major degrees in English with dreams of writing and directing movies.  He works as a security guard.  I had an awesome job as a secretary for a government organization when I was in college.  When I was 19 years old and diagnosis with thyroid cancer, I decided I didn’t want to become a nurse.  I decided on counseling as a career path.  When I went to grad school, I turned down a job offer for a full time secretary position.  I felt this was my calling in life.

I had an awesome mother who married a man with major mental health issues.  This man is my biological father.  As a teen, I read through some of his hospitalization paperwork.  He was diagnosis with Paranoid Personality Disorder.  He was extremely verbally abusive.  You got sick. You were against him.  He verbalized to us his children that we were never wanted.  I had both kidneys fail as an toddler.  I spent 2 or 3 months hospitalized in Boston.  I needed specialized schools to developmentally catch up. Later, it was discovered when I was a teenager that I had a learning disability.  I struggle with the written language.  I love writing.   I was placed a grade behind in school due to my illness.  I was older than the kids in my grade.  I hang out with the older kids.  I idolized my brother and sister who was 6 to 7 years older.  My mother was involved in a car accident when I was 13 years old.  She never walked right ever again.  It lead to a serious of other falls and she died with some horrible form of dementia when I was in cancer treatment.  I have felt different all my life.

My mother had a dream.  When I was 18 years old, my father wanted me out of the house.  My mother told him to leave.  I still had a year of high school.  I was an honor roll student.  My grades dropped so bad.  I graduated with a D in high school.  I was always concerned about my mother because we needed a restraining order against my father.  It was Alateen that saved me.  My grandparents were the alcoholics but I found a group of loving and accepting people.  I graduated and started working in my field.  Then our first daughter died of a rare disease.  I lost my job.  My brother and sister verbalized some horrible statements about her death.  Every month was a negative pregnancy test and a empty womb.  Then I give birth to my daughter Hope.  My brother and sister showed up at the end, when there was proof she was healthy.  Immediately, we had problems.  Worst of all, my brother had physically threaten someone, which I didn’t know.  I left my daughter Hope in this person’s care.  My gut was sending warning signals.  Others were telling me that I was over reacting.  I listened to others.  It was a major blow up.  I made the decision to end the relationship with my brother and sister for Hope’s sake.  They didn’t come to help, when I had breast cancer.  My mother died.  I never hear from them again.

A few years ago before my last cycle with my own eggs.  My aunt called to tell me my father died.  I have been searching for information on this off and on.  It’s hard when you are told you can’t have children with your eggs.  It’s own grieving process.  I stopped talking to others at church, in the neighborhood and at work.  I cried when others were not looking.  I was polite, but I barely spoke to others.  More relationships began to fall apart.  I use to lay in bed all day and cry.  I looked at my career and my life and I saw everything I didn’t get.  Some of the old thoughts started surfacing. I didn’t want to celebrate my birthday anymore.  When I turned 40, my last cycle with my eggs failed.  We had one affordable option across the country known as embryo donation.  It took months of financial saving for this.  Joy was not the typical embryo donation.  The program uses both egg and sperm donation.

40 was tough, I have no family outside of this house.  My sister sends all our birthday cards late on purpose.  She has never seen Joy, but she sent gifts at Christmas.  Both my girls were born in August.  I was trying to contact my friend about the embryo donation program.  He committed suicide two weeks before my 40th  birthday.  One of the ways, I survived growing up was to stay very close to the family pets.  So, two of my cats died about two weeks apart around my birthday.  I feel the emptiness of my siblings not here.  On the maternity ward, everyone had visitors.  I had Ken and my daughter.  Easter is this weekend, I hear people saying I have 20 family members coming.  The four of us are going to a restaurant for branch.  It’s my birthday weekend and a lot of people will not remember.  My brother and sister, whom I idolized as a child will not be found.  My heart is broken.

Over the past few years, I am trying to move from crying about what I don’t have.  I am focusing on my children.  I go to mediation class.  I don’t tell people my life story.  I tell bits and pieces to see if I am accepted.  Monday is my birthday.  I miss my friend who died.  I miss my mother, brother and sister.  There is this whole.  I had beliefs my life would be so different when I grew up.  I am connecting with other through meditation and spirituality classes.  I said to Hope about a Saturday daddies book baby group.  She is young.  She told me to join a new mother’s group.   I am worried I would not be accepted.

At my age, I done forcing others to accept me.  I am the mother of two angels, who died from a horrible rare disease called campomelic dysplasia. I am a infertility survivor.  I survived recurrent pregnancy loss, male infertility and female infertility.   I am a young breast cancer survivor.  I am turning 42 years old.  I don’t have a big family.  Everything I had is earned.   I get intense sadness especially during my birthday.  I am getting to that point.  I am different.  I am special because in the words of others with rare disease, I am a rare mother.  I deserve to be treasured.  I have been crying for weeks about my birthday.  I hope I can get to that place of acceptance, gratitude for what I have and see myself as a beautiful person.  Amen from the Agnostic!





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

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

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

Going Back To Church: Struggling With The Sprituality Piece

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

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

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

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!