March 29, 2017

The Death of a Parent


On February 3, 2017, my father died.






My father was 73 years old and his death was unexpected.  He had an odd cold for about two weeks.  It started with the regular cold symptoms: fatigue, cough, loss of voice, fever and it became something else.  I could hear it in his breathing and in his voice over the phone.

My parents live 4 hours away from me and while it doesn't sound very far away, it feels far away when you have 5 children, a job and you are in school full time.

When my Dad first got his cold, my mother was visiting me.  She thought, like we all did at first, that he just had a cold and he was worn down.  Getting sick when you older take its toll.  He called my sister who was spending the night with her son and asked her to come home, he just didn't feel right and he had some chest pains.  She rushed back home and took his blood pressure and he was doing better by the time she got to him, so he just wanted to go to bed.

A few days later, my mother went home and my Dad didn't seem to be getting any better, he had lost about 40 pounds.  She took him to his family doctor and they said he just had a cold.  My Dad also had a routine heart check up appointment that kept getting rescheduled.  First, they needed a different machine, next my Dad couldn't take the test while he had a cold ......

The following week my Dad was still not sounding any better so they went back to the doctor's office and they prescribed an antibiotic.  While my Dad was walking to the car, he fell down and hurt his ankle.  My Dad was a very large man and it took a few people from the doctor's office to help him get in to the car.  The said it was probably just sprained and he should keep his foot elevated and put ice on his ankle, this was the afternoon of Thursday, February 2nd.

I spoke to my family that night and said that they should take him to the hospital, he could have a blood clot, being that he was so large and in so much pain.  They said, he doesn't want to go, we have his leg elevated. They said we will see how is feeling tomorrow.

I hung up with my Mom and called my brother, we don't speak that often, we just have so much going on but I made a point to call him and tell him to call our Dad.  We always call my parents but we usually just say, "Hi Dad, how are you?"  He would reply, "I'm fine" and we would ask for Mom. I told my brother that we both needed to make a point of just calling our Dad and checking on him.  I had a bad feeling about our Dad's cold and I told my brother that it was important that he call when I hang up, he said he would call our Dad.

I called the next morning, Friday, February 3, 2017 and I asked my Mom how my Dad was feeling, she said he had a rough night, his ankle really hurts him. This was 11:30 in the morning, I told my Dad I loved him and told myself that if he didn't go to the hospital, I was going to drive straight to their house after work around 4 p.m.

My 27 year old niece who lives with them said that she heard them awake around 5 a.m. that morning and she went out to the living room and had a cup of coffee with them.  She told them that she was really worried about Grandpa's cold and he said he was fine.  She went to work that day with a heavy feeling in her heart.  She was anxious and worried all morning.

At 1:30 p.m. on Friday, February 3, 2017, I was pulling into my work, where I teach and my phone started ringing.  I got all my teaching stuff together, got out of the van and answered the phone while I was walking in to the school.  I said, "Hi, what's up" and my sister was on the phone screaming "DAD IS DEAD, DAD IS DEAD!"  I think I went into shock for a minute,

I teach at the same school that my young children attend.  I knew I had to pull it together for the kids sake and try to remain calm so that I could tell them at home.  Well, you can tell yourself one thing but your body sometimes has other ideas.  I started shaking, throwing up and crying.  Not just crying, it was a primal cry.  I have never felt anything like it before.  Thankfully, I work with some amazing people and they rallied around me and my kids.  I got the kids in the van and managed to drive home on auto pilot.

My husband rushed home and we took the longest 4 hour drive to my parent's house.  All I wanted the entire ride was to be there already and to be with my family.  I wanted my husband to drive faster, I wanted the traffic to lighten up, didn't everyone on the road know that my father just died?  That's the thing, your world stops but the world doesn't.  When we were about 20 minutes away, I started to feel less anxious and I started to feel scared.  I knew that once I walked in to my parents house and my Dad wasn't sitting in his chair, his death would be real.

I walked into their home and I sat in his chair and I cried.  I cried out tears that stung, not the tears made of  water, lipids, etc., it was tears made up of heartbreak, anger, loss, and pain.

I cried for my Mom, who spent 53 years with her husband and would never roll over and see him in bed next to her again. I cried for myself and my two siblings, who would never be able to speak to our father again and I cried for my brother who never made that phone call to our Dad, he got busy and thought he would just call him on Friday after work.  I cried for his 7 grandchildren who would never get to spend another holiday with him.  I cried for his 6 siblings, who lost the leader of their pack, the oldest and they had just lost another brother and a son/nephew the year before.  I cried for the countless numbers of family members and friends who would never see or speak to him again.

I finally got the story of what happened that afternoon:
On Friday afternoon around, 12:45 p.m. my Mom told my Dad she was going to take a shower, he said okay and he was sitting in his chair with his headphones on for the television.  She came out of the bathroom around 1 p.m. and my Dad had the remote in his hand and he looked like he was sleeping in his chair so she let him sleep. My sister came home around 1:15 p.m. and said, "Hey Mom why doesn't Dad have his leg elevated?" My Mom said, "he is sleeping, he is fine" my sister said, "no, his leg needs to be up."  So my sister went over to our Dad and said "Hey Dad we need to lift up your leg, come on Dad help me get your leg up on the chair."  She quickly realized that he wasn't moving or responding.  She checked his heart and called 911 right away.  She jumped on top of him with another relative and they started chest compression.  The EMT workers got the house right away and my sister called my niece to tell her what happened.  My niece walked in the door while the EMT workers were trying to revive her Grandfather.  It was very traumatic for everyone and I am sure no one will ever forget that moment in time.

My Mom didn't want to have an autopsy so we will never know exactly what killed him.  Diabetes was listed on the death certificate.  After speaking with many medical professionals, they all think that he had a blood clot that traveled to his heart.  He was probably throwing small blood clots throughout his two week "cold".  My mother and sister said he still had the remote in his hand, so whatever took his life, took it fast and hopefully pain free.  Everyone has said that if you have to die, a blood clot is the way to go, it's quick and painless.  I am sure it is an easier way to go but I am not so sure that quick is the easiest way to lose someone you love. I know there is no easy way but there was no time to say so many things.  That is why it is so important to say the things you need to say today!

My father was a stubborn man and no one could have made him go to the hospital if he didn't want to go.  I don't blame anyone for his death and no one should blame themselves.  I did a lot of what ifs after my Dad's death; what if he went to the hospital, what if his heart appointment wasn't pushed off, what if he didn't fall ... It doesn't help anything or anyone to second guess.  When God wants you and your time is up, it's up.  If my Dad was throwing blood clots that damaged his heart, he would have been in a rehab and possible a nursing home for the rest of his life and he would have hated that.  He died, peacefully in his chair at home.

We had a celebration of his life and we tried to figure out where to have it; a funeral home, a cemetery, a chapel and in the end my mother said, "lets have it at home, that's what he would've wanted" and she was right.  My cousin came to our house and helped us get through all the details. We could not have gotten through that week without her help and love.  Three of my aunts and one of my uncles drove from upstate New York to Florida to be with all of us.  We posted an obituary in the newspaper, I made a memorial program and printed out a beautiful picture of my parents to give all of his siblings and family members, we order trays of food, tables and chairs and hired a pastor to say a few words.  It was a beautiful service and it was healing to be surrounded by so much love.  I think my father would have been touched and honored that so many people came to pay their respects and to share their fond memories.

We picked up my father's ashes the following week.  My mother, sister, brother, niece, nephew, brother in law and sister in law all went together to scatter his ashes.  It was a beautiful, sad and a life changing moment.  It was nice to be surrounded by loved ones at his celebration of life but it was so special to just have the immediate family together to scatter his ashes to the wind and afterwards, my mother, brother, sister and I shared a family group hug.  It was very special and I will never forget that moment for as long as I live.

Our whole family was changed by my father's death.  We feel extremely protective over our mother and worried about her all the time.  She is having a very hard time, which is to be expected, we keep reminding her that she has so many thing to look forward to this year:  a trip she is taking in August, her granddaughter's Bat Mitzvah this November, and countless other family moments.

For me personally, some days are better than others.  Some days I am fine and then there are the moments that it just hits me and I start crying.  Night time is the hardest, you can hear your thoughts the loudest when it's quiet.

Give your loved ones a phone call or a visit and tell them you care.  Don't wait, do it right now.

I will end this post by sharing the speech I gave at my father's celebration of life and a video.


My speech today for my Dad's Celebration of Life Service:
When you hear that a parent has died. The earth starts spinning around and when the spinning stops the earth has permanently changed. The sky is not the same shade of blue, the grass is a duller shade of green, the ocean feels colder, the night feels darker and the house feels empty and quiet even with a million people inside.
People say that funerals are for the living and that the dead are at peace. No one can know what happens after death but I hope that my Dad has found peace and he is with his family in heaven. I hope Grandpa Earl is waiting with open arms to wrap around his first born, Grandma Elsie has a pizza pie waiting for him, his brother Donald and his nephew George are waiting to have drink with him, my Grandma Elaine, Grandpa Leo and Uncle Fred are waiting for him to play a game of cards, and my Aunt Cheryl is saying "Hey Butchie, I am glad to see you brother."
The earth will never be the same but my family and I know that if we need to feel close to our Dad, we just need to wrap our arms around our Mother and he will be there. She carries his heart, she carries it in her heart.



video




September 8, 2016

Essential Thrombocythemia / Hydrea Update

Hello everyone, wanted to post an update.

I am doing okay, the 6 HU pills per day (3000mg) have done the trick and my platelet count is down to 650,000, which is great for me.

But, now I am having an issue with my heart.  I may have had a mild cardiac episode and my heart lining could be damaged.  I am going to the cardiologist on Monday.  I will post an update.  Anyone else have any heart issues while on Hydrea?

I turned 40 this year.  This year will be 6 years that I've been living with E.T.  Going to the hematologist every three months to check my platelet count.

On a personal note, our oldest started college this year.  Time goes by so quickly.

I hope this post finds everyone doing okay.

Take Care,
Shayna


March 31, 2015

Essential Thrombocythemia Platelet Count Update

I am so sorry that I have not updated this blog in a very long time.  I have had so much going on with my five kids, etc.

I graduated from college with my AA this past December and I am working towards my Bachelors and Master's degrees.  My youngest child entered Kindergarten this school year and it has allowed me time to pursue my dream of finishing my education.  I want to become a high school English teacher.

I am feeling ... okay.  My platelet counts are still in the 750,000 which is not great, they have increased my Hydra to 3000 mg (6 pills a day).  I also still take a baby aspirin everyday.  The good news is that I tend to be symptom free as long as my count does not go over 900,000.  My platelet count has not reached 900,000 in over a year.

The greatest symptoms I experience when my platelet counts are high are the following:  pins and needles in my hands, feet and on the top of my head and also I become very fatigued.

I try not to let my chronic illness control my life.  I try to block it out of my mind.  The times that it bothers me the most are when I become very tired and when I put those 7 pills in my hand everyday at 37 years old and of course when I go to the doctor.  It never gets any easier getting stuck with a needle for blood draws.  I thought it would get easier over time but it still hurts and I dread it every time.

I am often scared when I think about the future because my illness began in my early 30's and I don't think it's ideal to have to take Hydra for the next 40-50 years.  But then I think about and the future holds no guarantees for anyone, whether they're sick or healthy.

I hope everyone is doing well and I will try to update my blog more often.

Take Care - S.


July 30, 2013

Essential Thrombocythemia Update & Platelet Counts

It's been a really long time since I updated my blog.  It's been a busy time for our family.

Essential Thrombocythemia Update:  At my doctor visit two months ago, my platelet counts went down to around 500,000 so the doctor said I could reduce my Hydrea dose from 5 pills/2,500 mg to 4 pills/2,000 mg every day.  It was not a big reduction but I was excited. The break didn't last long, at my next months doctor appointment my numbers went back up to 650,000!  UGH!  So my dose was put back to  5 pills/2,500 mg of Hydrea everyday and two baby aspirins everyday (it really helps with the pins and needles I experience from the E.T.)!

Overall, I am okay, my main side effects are fatigue and paresthesia (pins and needles).  Most of the time I don't even think about my illness.  It only hits me when I take my medications at night and at my monthly doctor appointments.  It really never gets any easier being stuck with a needle.

Next week we are taking a family vacation to Hilton Head, South Carolina.  We are all very excited to have some quality family time!  We're meeting up with my husband's side of the family for a family reunion.  The kids are very excited to see everyone. Packing everyone and driving for many, many, many hours with five kids, my husband and I are not so excited about but it will be well worth it.

The kids are keeping us busy, we are gearing up for a new school year in a couple of weeks.  We will have a high school student, middle school student, two elementary school students, and a Pre-K student at three different schools!  Also, I am going back to college in the fall, it's been a long time but I am very excited to further my education.  It will be a busy year but I really will try to do a better job at keeping up with this blog.

The best thing about my blog, is that while I wish E.T. on no one, I am grateful to feel not so alone with my illness.

Thank you for reading and I hope everyone is doing well.

Take Care -
Shayna

March 8, 2013

E.T. New Doctor - Be Your Own Advocate

It's been a while since I've had time to post on this blog.

I started seeing a new Hem/Onco doctor, I like him much better than my last doctor.  I don't feel dismissed when I have questions, I feel like I get more than my fifteen minutes worth so to speak.

I am still on Hydroxyurea (HU), 2500mg a day (5 pills each day), although at my last appointment he said I could try to take 4 pills a day twice a week.  I also take two baby aspirin everyday to keep my thick blood from clotting.

The HU still makes me very tired but so do the five kids.  I have learned to deal with exhaustion, I try to take walks and find ways to relax.  Taking time for yourself is key to managing the exhaustion.  Even if it's just a long hot bath and a cup of tea, it really helps.

I am no longer taking Aggrenox (blood thinner med), just the baby aspirin.  I still experience some pins and needle sensations from time to time, especially in my hands, arms and the top of my head.  My new doctor seems to think it's a side effect of the HU meds.

Every week is different.  I am past the freaking out stage now that I am 2 years into dealing with the Essential Thrombocythemia (ET).  I have become more aware that the meds are just a part of my life now.  It use to really freak me out that in my thirties I have to take so many pills every day.  My pills are just a part of my nightly routine now.

My every two month doctors appointment and every month blood draws are the times when it really hits me that I have a lifelong disease.  The hardest part is just worrying about the future and what is going to happen with our health care system.  I think about how much these meds cost and it's scary.

Today, I am feeling okay, my platelet numbers were 450,000 at my last appointment and that is the lowest they have ever been since I was diagnosed in January of 2011 with ET.

I hope that all your good days out number your bad days.

Take Care - Shayna

August 7, 2012

Essential Thrombocythemia Update - Hydroxyurea

It's been a long time since I updated my blog, life is very busy these days with our five kids.

I have been taking 2000mg a day of Hydroxyurea (HU), one pill of Aggrenox (aspirin & blood thinner), and one Iron pill every day for about the last year.  The best my numbers have ever been was about 500,000!

My last blood test showed my numbers were 850,000!  It's very upsetting to be taking HU, a drug with many side effects and not see real results.  The only good news is that the pins and needles, parathesis, has not returned with my high platelet count.  I only had one issue with the pins and needles and it was at a time when my stress was through the roof!!

I am currently trying to get an appointment with another hematologist/oncologist to get another opinion.  Surprisingly enough, HU, even with all its side effects seems to be the medicine that has the least side effects.  I am told that the Pegasus injections cause flu like symptoms, etc.  I am looking forward to meeting with the new doctor and getting his opinion.

My biggest concerns are that I could have a major stroke, my Essential Thrombocythemia could progress into Polycythemia Vera or Myelofibrosis or that I could develop a form of Leukemia.  

Most of the time I try to forget that I have a chronic illness, an illness that will NEVER go away.  I have many days that I feel fine, but every day I have to take six pills and they remind me of my illness.

It's hard to look fine on the outside but feel exhausted and sick on the inside.  It's a lot of work for your body to pump two times the normal amount blood through it, everyday.

Thank G-D, I have not had any hospitalizations since last August.  I will post again after my meeting with the new doctor.

I hope everyone is doing well.

October 9, 2011

Turning Three Years Old - Upshern

Our son, our baby, turned three years old last week!  He is really growing up fast.  We're having a party for him today to celebrate his birthday and we're finally going to cut his hair!  YEAH!

Some people in the Jewish religion, wait until a boy turns three years of age before they cut his hair.  Once they turn three they throw a birthday party/haircutting ceremony called an Upshern:

http://en.wikipedia.org/wiki/Upsherin

Once his hair is cut, he puts on his kippah and tzitzit.  Our son's hair is almost to his tush, it's long, curly on the bottom and dirty blond.  Once we cut his hair it will be short and probably all brown but most of all it will make him look like a big boy.  I don't think I am ready.

The days are long and the years fly by! 

He is our fifth and last child.  With four sisters, he has more "Mommys", than he knows what to do with.  He is one of the most loved little boys on the planet.  He is also very spoiled, his poor wife will be very upset with us one day.  LOL!

We hope that this Upshern (haircutting ceremony) will one of many, many more joyous occasions in his life. 

We love you Y!  You're a sweet, little, handsome, friend and pal.  You make us HAPPY every day!

Happy Birthday to our sweet baby boy!

- Shayna

September 9, 2011

In Hospital - Blood Clotting, Chest Pains, Aggrenox

I was in the hospital two weeks ago for about three days. 

It all started when I was at home and I started feeling some sharp pains in my chest.  I felt the first sharp pain, it lasted about a minute and I thought it's probably heartburn and I was going to let it go.  About ten minutes later I felt another chest pain, also lasting about one minute and I thought this is odd.  Then right after the chest pain subsided, I felt a horrible pain in my left arm and another chest pain followed shortly after.  Thank G-D, my Mom was visiting and I told her what was happening and then I threw up.  My Mom said just to be sure we should call an ambulance and rule out a heart attack.  I then explained that if it's not I am going to feel really stupid, maybe I should just lay down for a while.  My Mom then SCREAMED, if you are wrong you will feel really DEAD which would you prefer?  We called an ambulance.

The paramedics came in and did a twelve lead EKG test which came back slightly abnormal so we went to the emergency room.  They said they needed to keep me over night in order to complete a full cardiac workup.  Which included every test under the sun, an IV (which was never needed) and they drew blood from me every hour (or at least it felt like that).  I stayed for almost three days because they need to draw  blood three times at different times of the day to test your blood enzymes to rule out a heart attack.  The cardiac doctor came on day two in the hospital and said all my tests looked fine and that whatever was going on was not cardiac related.

For information about signs of a heart attack, please visit this website:
http://www.heart.org/HEARTORG/Conditions/Conditions_UCM_305346_SubHomePage.jsp

The chest pain stopped shortly after I got to the ER, of course.  But the left arm pain and left leg pain never subsided.  The pain was there the whole time I was in the hospital.  On day three in the hospital my hematologist / oncologist came in to see me.  He said that the leg and arm pain were due to my blood clotting from my Essential Thrombocythemia (Blood Platelet Disorder).

I am still going to be taking my Hydroxyurea (HU) 500mg, three times a day and now I have to take a new medication called Aggrenox, two time per day.  Aggrenox is a blood thinner and aspirin all in one, so far I have not experienced any side effects. I am still exhausted, which I am still positive has to do with the Hydroxyurea.  Still the exhaustion beats not taking the HU and my platelet level rising so high that I have a major stroke.

The following links are for anyone looking for more information about Hydroxyurea or Aggrenox:

AGGRENOX - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001061/

HYDROXYUREA - http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682004.html

Please remember that I am not a medical professional.  This is just my experiences with my illnesses.  If you're not feeling well, you should see a medical professional, ASAP.

Also, all my kids have been passing a cold around (school is back in session) which made it's way to me and flared up my Asthma.

Hopefully, everyone will be feeling better by next week.

I hope all is well with everyone.

Take Care -  Shayna

August 18, 2011

Update on Summer, Essential Thrombocythemia - E.T. and Meds

I am so sorry that I have not posted since July!  It has been a crazy summer to say the least.
All five kids stayed home this summer and I was the acting cruise director.  UGH!  The kids actually did pretty well.  They spent time with their grandparents and we went on a lot of day trips. 

Thank G-D for my oldest daughter who helped me a lot with the kids this summer!  I was able to do my work thanks to her help.  We did some special one on one things together when Dad was home.  She is really growing up into a beautiful young woman.

My hematologist/oncologist said that he wanted to give me a solid two months before he checked my blood again to determine whether we can start weening off the Hydroxyurea (HU).  I will be going to the Dr. next week and I will post an update.  (I am wondering if he wanted to wait for two months because he knew the kids were going to be home and I would bring them in with me?  Hummmmm LOL)  Meanwhile, the HU is still making me so tired.  Also, my teeth are starting to have a lot of problems.  I am wondering if this is a side effect of the meds?  I never really had any issues before my diagnosis with Essential Thrombocythemia.

I hope everyone out there is doing well and I will start posting regularly soon!  The kids go back to school on Monday!   =)

- Shayna

June 17, 2011

Hydroxyurea - Update

I went to the oncologist (I still can't believe I have an oncologist in my 30's!) last week and my platelet count is still high 650,000.  5,000 less than last month but not a great improvement.  He was hoping to be able to decrease my Hydroxyurea (HU) or see how I fared without taking the meds all together.  Instead, I need to stay on my 1,500 mg (3 pills) per day of HU, 1 baby aspirin per day and 1 Iron pill per day!

I told the doctor that all five kids will be home with me this summer, (no summer camp here, we are just trying to keep up with the bills), and he said I don't have to come in for another two months.  LOL!   =)

Hopefully, in two months time, my numbers will have come down enough to reduce my dose of HU!  I really don't want to have keep taking a chemo drug for 40 years!  The exhaustion is a lot to handle when you are trying to raise five kids.  Actually, scratch that, I think it would be a lot for anyone to handle.

No matter how I feel:  exhausted, overwhelmed, scared ...  the thing I feel the most is, BLESSED!

I am ALIVE!  I am with my family and while annoying, this is a disease I can live with for many, many years - Please G-D!

I will posts more updates soon.  I hope everyone is doing well!

- Shayna