Sunday, October 30, 2011

Last Rights/Baptism today. Busy Day!

Pita received his last rights and while we had the opportunity we went ahead and baptized the boys!  Pita and I always wanted to get it done but we never got the opportunity.  It was a private little ceremony that was held right in Pita’s bedroom at the foot of his bed so he could be a part of it!  This made me feel so good that he was able to see them FINALLY be baptized.  I know he is happy with it as well.

My sweet and wonderful Cousin Jim was able to perform both the last rights and the baptism for me during his visit today.  And truth be told, I am so glad we waited until HE was able to do this for us.  I always wanted him to perform the baptism and I am so glad he graciously agreed to do it for us under these circumstances.

To Franny and Jim…..THANK YOU SO MUCH JIM.  I know if Pita could tell you himself, he would shout it with me as well.  Your kindness through this entire ordeal is beyond words for me!  You have no idea how much I appreciate you and Franny as our family and part of our lives.  I can never repay you.  Thank you both!

To my sil Peggy…..Thank you Peggy for ALWAYS being an important part of CJ and Michael’s lives.  You are always there for good, bad and everything in between!  You say that everything happens for a reason and I have to say when it comes to the family…I believe you.  Pita and I met and married for 2 reasons…CJ AND MICHAEL!!  GOD sent me CJ and Michael so that I would be ok and stay strong during Pita’s illness.  He sent you into our lives to help support us the way you do and you do it best!  Thank you so much, I can not begin to imagine our lives without you in it.  Don’t you EVER leave us!!  EVER!!

To Dad…..Thank you so much for coming to see Pita today.  You made his day, it brightened him up even though he may not have showed it. When I saw his face when you walked in the room, I knew he was happy!!  Thank you for making him happy!

To my sister Maria….Thank you for coming and being a part of the baptism.  You have no idea how much I sincerely appreciate your kindness and love ALL OF MY LIFE!!  I am so happy YOU are my ONLY big sister!  I love you!

To Anthony and Katie….Thank you very much for coming and seeing Pita today.  He was looking forward to seeing you guys all day since I told him this morning that you guys may be coming to see him today.  Thank you for making Pita smile!!  WE LOVE YOU BOTH!!

Saturday, October 29, 2011

NEVER been more scared in my life!

Ok I had a MAJOR scary moment today.  After hearing of the passing of my younger brother (R.I.P. Domenick) I had a very bad, emotional and quite jumpy day!  So about 6 pm I went up to check on Pita and I saw his blankets slumped over the side of the bed and it really looked like he was tangled up in the blankets.  I started calling his name and I got no answer and I was completely afraid to touch what I thought was him!  I called his name again, only this time a little louder and still I got nothing.  So now I am completely PANIC STRICKEN and I SCREAM his name and I heard him scream "WHAT!" back at me and I fly into the bathroom and he is sitting on the throne!!  My heart was beating SO HARD that I could hardly talk and I grabbed him and apologized for screaming for him and grabbed him and hugged him!!

I am not so sure if I can do this!  I was like a MAD WOMAN when I saw those blankets slumped over the side of his bed and it really looked like he was gone.  I was so shaken to my core that I could hardly walk!

After calming down enough to walk down the steps I sat at my dining room table and said to myself "Dear Lord before you take him, give me a few days to wrap my head around the loss of my brother.  PLEASE, 1 death at a time!!!"

So unfortunately my Cousin Jim and the rest of the family had to cancel for today due to the weather.  It's ONLY October 29th and it was snowing.  It was snowing so bad where Jim is from, it would have been too dangerous for him to drive.  I am a firm "SAFETY FIRST" believer!!  So we rescheduled for tomorrow.  He will be given his last rights and Jim will baptize my boys so that Daddy can be present for it!

BONUS:  Pita's Dad is coming to see him tomorrow!  He is really looking forward to see his Dad.  He was very excited when I told him Dad was coming to see him tomorrow.

Sleep well and rest up Pita...see ya in the morning!

Last Rights

Today my Dear Cousin Reverend Jim and his wife Franny are coming to administer Pita’s last rights.  He will also be a complete sweet heart and baptize my kids FINALLY!  It’s about time we have it done, they’re only 7!  So we will have it done now so that Pita can be a part of it.  We discussed it quite often over the past few years and we wanted to get it done but life was always so busy and it just got put off on the back burner!  Well today is the day and I know Jim is going to do a wonderfully beautiful job.  I trust he will!!!  He is such a kind and caring man, I don’t think I would want anyone else to do this for my precious boys!!  I also wouldn’t want ANYONE ELSE to give Pita his last rights.  Thank you Cousin Jim for your gracious kindness during this entire ordeal.

I am hoping that Pita’s Dad stops by today to see him.  He will be THRILLED to see him even though he is a bit under the weather today.  The last time they saw each other was Sept 3rd at the boys 7th birthday party so a visit is most certainly in order!  I look forward to seeing Pita’s face when his Dad walks in the room.

So here I am just lightly spiffying up the house while the boys are playing on the computer and the iPad!  

I went and checked in on Pita and another dreary and damp day means a VERY BAD day for him.  He is achy all over his body but he simply doesn’t want his medication right now.  I will go up in about an hour and offer it again and he may be ready to take it then!

Anyone that took the time to read today’s entry, I was wondering if you could do me a small favor?  Since he is receiving his last rights today, I was wondering if you could you please post a little “prayer type” reply to him so that I can read them to Pita later so that he can hear that there are others who love him and are praying for him and his dear family.

Thank you for your kind thoughts and prayers through all of this.  WE ALL appreciate it!  HUGS TO ALL!

Friday, October 28, 2011

Someone please wake me up NOW!!!!!

The hospice nurse came today at 4:45pm and she checked Pita and when we came back downstairs what she said next I just wasn't prepared for.  She said from what she is observing he could die any day now.  She said if he makes it to Thanksgiving it will be good but we shouldn't get our hopes up for him being with us for Christmas!  I wasn't ready for this.  I never thought my life would be like this that I would become a widow at the age of 44!!  I don't want him to leave my life, I am NOT ready for this at all!!  I don't want to tell my kids that Daddy died.  I don't want to tell myself that.  I don't want to tell the world that I am a widow!  I AM NOT READY GOD DAMIT!!!!!!!!!!!!!!

Why can't I wake the hell up from this nightmare!????  When will this bad dream end?  I want to wake up in the morning and know it was all a very bad nightmare and everything is IN FACT ok.  He will come downstairs and lecture me and the boys as he is walking out the door to go to work on Saturday.  I will be upset that he has to work but I will know he is working hard to provide for the boys and I!!  I will call him and ask him to pick up milk on the way home and he will lecture me AGAIN that I should have thought about that when I was at the supermarket last!!  Then I will lecture back that the last time I was at the supermarket I DID remember the milk but you and your kids drank it all because the last time I was at the supermarket was a week ago!!  I will hang up and bitch him out from one end of the house to the other then it will be OVER!  He will come home and complain about what is for dinner or about how I cooked the vegetables!!  Our life would be normal again when I wake up!!!!  I want to wake up, someone please wake me up NOW!!!

My life is in danger of a MAJOR change that I don't want, my kids don't want, we shouldn't have to be forced to deal with!!

I want my Pita BACK!!!!!!!!!!!!!!!!!!!!!!!


I Love You! Shifting to autopilot!!

You wanna know what's funny about those 3 little words.  Pita and I haven't said that to each other in months ... maybe even YEARS!!!!  Why I don't know because we used to say it all the time.  We NEVER got off the phone without saying "I love you!  I love you too!"  As a matter of fact if we didn't say it, we would call each other back and remind the other "I love you!" and we would just laugh!  Then one day it was never said again!!  SAD!!!

For the past month I think we say it to each other at least 10 times a day.  I say "I love you SUGAR! or I love you SWEETS!" and he RESPONDS each and every time!!  Makes me feel good!!  I don't want to think of the day he can't say it anymore..he will find a way to respond, I just know it.  He will be with the boys and I ALWAYS!

Autopilot is a very good analogy!!!  I put my game face on and shift to autopilot and do what I have to do.  I REFUSE to put Pita in a hospital.  He is my husband and I love and take care of him until he flys home with the angels!  I like to think he would do the same for me!  It comforts me to know that I am keeping him comfortable for the short time he has left in this life. 

I adore him and I will always cherish the gifts that were given to us 7 years ago...those beautiful boys!!  I am beginning to think GOD gave me the boys to somehow keep me happy in my husband's inevitable absence.  My cousin Franny put it best when I spoke to her last night.  She told me the boys were my "Jr. Pita's"  I just laughed and agreed!!  lol

I know one thing, if I had to go through this entire ordeal totally alone....I'd probably be a basket case.  The boys keep me grounded through this entire thing!!  People say I am the strong one, that I am the ROCK....truth is THEY are my ROCK!  I draw strength from them, they are the bravest human beings I know!  I love them so much and I can NEVER repay them for keeping me strong through all of this!  If I am the rock then C&M are the MOUNTAIN!!

Thursday, October 27, 2011


Pita had a VERY BAD day today!!  Unfortunately the whether now plays a major role in whether he is going to have a a good or bad day and it was so dreary and damp out today that it started and ended bad!

He slept for the better part of the day and when he did wake up he complained about pain in his left side and asked for pain medication.  I accidentially gave him the wrong pain meds and 2 hours later he was asking for more pain medicine and when I realized what I did, I called the hospice nurse and asked if it was safe to give him more.  She instructed me on how to handle it and he is peacefully sleeping now.  Poor guy was so achey today, there was just no relief in sight for him!!  I hope he sleeps well tonight and has a better day tomorrow!

Bad morning!

Woke up at 6:30 this morning and got the boys fed, teeth brushed, dressed and out the door for school.  I went up to check on Pita after the boys were out and he was demanding pain medicine because his entire left side was hurting.  I gave him his pain meds and laid him back down, covered him up, tucked him in and left him to go back to sleep.  When the nurse comes today, I will let her know that he had pain this morning.

Yesterday his Hospice Comfort Kit arrived and that's when it hit me!  It was like BOOM!!!  I realized the end is near for Pita.  I don't want to let him go, I want him cured and back in my life FULL FORCE!!!!!!!!!

Wednesday, October 26, 2011

I just needed for my house to feel normal again....

and I got yelled at for it! 

I made plans to host a dinner for some of my "guardian angels" you know the people that keep me sane through all this.  This included my sil Peggy, my sister Mary and her g'son, our dear friend Mr. Vernon (whom without him, my house wouldn't be as clean as it is), and my friend Michele and her beautiful daughter Cree, her wonderful boyfriend CJ and their gorgeous girls Sabrina (we still have to finish our MAN requirements list girlfriend!!) and Olivia.

I made a huge pot of spaghetti sauce and cooked sausage and mozzarella stuffed meatballs.  Tonight before everyone came over I put the water on for the spaghetti and we had dinner and we laughed and had a wonderful time.

It felt SO GOOD to have some normalcy back in my was a great time and I loved having everyone over and feeding those that stick with me through this whole thing as sort of a "thank you from the bottom of my heart!"  It felt good to see everyone enjoying the meal I cooked for them and laughing instead of the silent doom and gloom that we currently live in.

I go check on Pita and bring him 2 Oreo cookies and that's when he hollared at me for carrying on so late in the evening when he is trying to sleep.  Sorry dude, but it was worth every moment of you yelling at me to have 1 night of normalcy in this's been a LONG TIME!!

I apologize and next time we will be more quiet!  Now shut your trap and go to bed!!  ROFL

I shall see you in the morning!


 So I was putting the boys on the school bus today and before I did, I gave them their usual piece of chewing gum so as to save their clothing from being chewed to SHREDS!!!  I see the attendant telling them they can't have it so I go to the bus and she tells me it's a safety issue!  REALLY??  Gum on a school bus is a safety issue???? 

WOW not only do you learn something new everyday but you also learn something stupid everyday I guess!!

Needless to say you can't fight the system so I tell them to give me their gum and they are off on their way to school!

I bring Pita his tea and get him situated before he barks at me to get out (he does it all the time...LOL) then I go use the potty.  Now I am thinking about this gum on the bus!

My first thought was "How stupid, I mean really!  Why can't kids just be kids even with their sensory, behavioral and STIM issues!!????"

Then my mind really goes off on a tangent!!  "everyone is attempting to save the whales, save the kids, save the elephants, save this, save that!!  The ONLY thing that needs saving is the fucking people!!"

Now think about it for a second....

If people weren't out on the oceans harpooning the whales, they would be fine!

If people weren't so busy telling kids what they CAN'T do and how to live THEIR lives and shape THEIR essence, they'd be fine!

If people weren't killing elephants for their tusks, they'd be fine!

If people weren't busy slinging mud during elections, they's be fine, WE'D BE FINE!

If people weren't busy getting into EVERY aspect of EVERYTHING that is WRONG, everything would be FINE!!!

See what I mean!

Nothing needs saving but PEOPLE!!!

Tuesday, October 25, 2011

Not sure if this makes sense but....

Have you ever wanted someone to die???  Well I do, I want my husband to die and not for the reasons you may be thinking.  I want him to die because it will bring him peace, his suffering can be over FINALLY and he will be going to a much better place then being trapped down here suffering the way he is.  I also want him to die because I need the boys and I to move on with our life and not be stuck watching him suffer day in and day out.  I want it OVER and I want to just move on!  Having him die will bring such sadness to us for sure but at the same time it will also bring relief that he is at peace and there will be no more cancer, no more dementia, no more complete quality of life, no more suffering, no more pain.

I struggle with this daily knowing it's completely wrong to want someone dead.  I (DON'T WANT TO) can't imagine my life without him but I also don't want him living the life he is living now.  I have no idea if this makes sense to anyone but for me it makes perfect sense.

Now you can bash me if you have to but if you saw what I see and dealt with what I deal with every single day with no relief in sight...I think you'd feel differently.

This is my prayer tonight and every night....

Dear Lord hear my prayer.  Please send the angels to visit with my husband so they can reassure him that the boys and I are going to be just fine.  He can trust that I am going to do everything in my Motherly power to keep the boys safe, provide the best I can for them, I will always fight and advocate for them, and we will always keep him as part of our daily lives by NEVER letting his memory die.  I am here to take care of our gorgeous precious boys that we created together out of the love that we shared together.  Send the angels to give him his wings so he can fly home to live with you in your beautiful heavenly world.  Let them guide him home to his Mother, Grandmother and all the other family he has waiting up in heaven for him to return safely.  Please ease his pain and suffering somehow, someway, the best way you know how.  Give him peace once and for all I beg you Dear Lord....please hear my prayer.

I think he still loves me/hoping for a better day today!

This morning I went in to check on Pita and he was a sleepy head this morning so I just covered him up, tucked him in and left him sleeping.

I just got home from Target...had to go get the boys winter coats.  I just went up to check on Pita and he was laying there sleeping peacefully under his favorite blanket and I took 2 more blankets and put them over him and tucked him and he DIDN'T move!  So I rub his head and kiss him and still DIDN'T move!!  So I kiss him on the forehead and whisper "I love you" in his ear and he whispers back "I Love You Too!"  My Sleepy Head!!

I just smiled and left him sleeping!

The home health aid came yesterday and he was sleeping and she saw someone go into the bathroom before he got up to use it and when he got up to go she said "There is someone in there you may want to wait a minute Mr V." and he snaps at her "it's my house and I know if there is someone in my bathroom!!"  She said "but I just saw someone go in there, would you like me to check and see if it's clear for you?"  Again he snapped "This is MY HOUSE, I DON'T NEED ANYONE TO TELL ME IF MY BATHROOM IS CLEAR OR NOT, GOT IT MISSY!!"

So I go upstairs and see if I could help in some way and she explains what happened and then I go check on him and he is still going on about how it's his house and she doesn't have a right to tell him who is in or not in the bathroom.  OH GIVE IT A REST!!!!  I told him to just calm down and go back to bed which he did!!

Boy he can have quite a mean streak!!  I call him Mr. Happy!

Last night after I got home from the supermarket my sil P went up to use the bathroom and she stopped in to check on Pita before she came back down and she asked "how you feeling?"  He said "I want FOOD!"  She asks "what kind of food?"  He said "I don't know I have to talk with my wife!"  She comes down laughing and says "your husband needs to consult with you about his FOOD he wants!  I asked if he was ok and he said 'I want FOOD!' so he wants FOOD"  I send my son CJ up with french fries and chicken nuggets and at least he was happy.

I hope he has a better day today!

Monday, October 24, 2011

UPDATE on 10 Happy Faces vs. 5 Sad Faces!

UPDATE:  While I was on my way to the supermarket this morning I got a call from the school nurse about Michael having a splinter in his finger and he WOULD NOT let her take it out so I had to detour to the school.  So after playing dr at the nurses office and getting Michael safely in his classroom I went and looked for the special ed case manager for the boys to discuss this 5 sad faces issue that was still bugging the shit out of me!!  I have her in the hallway and I say to her "You know what I have been thinking about this all weekend and I don't think it's fair to any of the kids in that room to have a rule change to suit her needs and set all those kids up for complete failure.  I am espically concerned about all the kaios in her classroom.  We are right outside Michael's classroom and you can't hear those kids breathing but we are now standing 20 feet from her class and what I hear is them carrying on like kids will when there is NO AUTHORITY!!  If she doesn't control her classroom that's her fault, NOT MY SON'S!!  5 sad faces a month means that in any given month they can go to school up to 20 days and if he gets 15 happy faces YAY for him .... BUUUUUUTTTT if he gets 5 sad faces so he can't come to the party???  So the negative SEVERELY OUTWEIGHS the positive here!!  My son should come to school in a positive environment.  That classroom is not condusive to his learning style but it is most certainly condusive to her teaching style.  I think he needs a calmer learning environment such as Ms. D's classroom so he will succeed!"

She says "well if we switch him, he will still have consequences in any class we put him in.  Also if we DO put him in Ms. D's classroom they very rarely have parties."

So I said "You know what he would go into that classroom knowing that whether he gets happy or sad parties means no parties FOR EVERYBODY, not just HIM!!!!  He won't be working SO HARD only to be told at the end of the month that he CAN'T attend a birthday party because he got 5 sad faces that month when he got 15 happy faces!!  It's SHEER NEGATIVITY and it sets ALL those kids up for EPIC FAILURE!!"
I was ready to switch him until he came out and said this to me "Mommy I like Ms. V's classroom and I am brave enough to handle it.  Please Mommy I know you want what's best for me but I really wanna stay where I am for now.  I get happy faces in her classroom and I love Ms. V!"

Of course I melted and because he asked me NOT to move him, he remains in her classroom but I PROMISED that if he came home and complained about the kaios in that room again and he says "Mommy, I can't take it" HE'S OUTTA THERE!!!

After all was said and done his behavior specialist came to me and said that the notice was NEVER meant for was meant for the kaiotic kids in the classroom!  She would NEVER UN-include him in a birthday celebration and she totally understands why I would be reacting the way I was and is truly sorry I took it the way I did.  She FULLY understands what is going on at home with CJ and she gives him as much breathing room as she can to help him succeed in the classroom.

BTW, he has been getting happy faces for the majority of this month in school!!  I am so proud of my BRAVE BOY!!

Sunday, October 23, 2011

Heard a crash again!

3:40 this morning I heard what sounded like crashing metal like maybe cookie sheets falling to the floor.  I get up and go check on the boys and they are fine, then I go check on Pita and he is awake but everything is fine.  I asked if he wanted me to put the blankets on him and he said yes so I covered him up, checked his heater and went back to bed.  Now I can't get back to sleep so I made myself a cup of coffee and started making out my shopping list for today.  I jumped on the computer for a few minutes, drank my coffee and started yawning and wanted to go back to bed so at about 4:40 this morning I decided to try and go back to sleep.  Took me a while but I eventually fell back asleep.

That's when I had a horrible dream.  I dreamt that I woke up this morning and went to check on Pita and had to come downstairs to call my sister in law to come get the kids so I could call Hospice and the undertaker.  Needless to say I was completely discomboobled when I woke up this morning and was afraid to go check on him.  I made him a cup of tea and went in and I put the blankets on him and he didn't move like he normally does.  So I softly called his name and he was startled awake.  I told him I made him a cup of tea, kissed him and told him I loved him and left him to sleep.

Not in the best of moods today because of that damn dream!!  I still have to get the gumption up enough to go to the supermarket.  Not going to be a good day, I can feel it!!

Saturday, October 22, 2011

Went well

Ms. J the Hospice Child Grief Counselor was here and we talked for a few minutes just her and I.  I told her what has been told to the boys so far and the terminology we have been using for the cancer, death and dying and Daddy being so sick with the boys.  She told me that I was doing a very good job by not sugar coating it for them but at the same time I wasn't scaring them either.  She told me I was very brave for keeping an open dialogue with them throughout this entire ordeal with them.  The know and WILL ALWAYS know that they can come to me for anything.  She also told me it's ok for me to have my moments of weakness in front of them because it shows them that it's ok to show emotion BUT to save the REAL BIG crying for when they aren't around.  I also shared our plans for his remains and she said that was a lovely idea.  She asked where his ashes will go and I told her probably in the dining room so that he can always be with us here.

After we talked she talked with the boys and it went very well.  They felt comfortable enough to open up WIDE for her.  They told her all their feelings and drew pictures for her.  CJ said he got a germ when he was 2 and that is why he is sick today and I asked if he was talking about his Autism and he looked like he wanted to say yes but said no.  I explained that Autism is NOT a germ but rather a gift from GOD that was given to him for a specific reason and that reason is to change this world I believed.  I hope he doesn't start thinking his Autism is a germ like Daddy's cancer germ.  She did say that the boys would probably need to be reminded of the information today over and over again.  She told them that they were so smart and knew so much about germs and she also told CJ that there are many dr's and scientists that were trying to come up with that pair of pliers to get rid of cancer germs from people's bodies but they just haven't gotten it right.  She told him to keep working on his idea and when he joins them when he is an adult, he can dedicate the cure to Daddy but in the meantime to love Daddy and help Mommy take care of him as best he can.

She recommended a book for me to read to them and I checked Amazon and it was there so I ordered it for them.

All in all today's visit went well.

Boys Grief Counselor to visit today

So The Hospice Child Grief Counselor Ms. J is coming today to meet with the boys.  I hope they are comfortable with her enough to open up to her like they open up to me.  The good news is she is willing to work with the boys Wrap Around Team in order to support them through all of this the best way we all can.

Pita's bedside commode, urinal, walker and gel foam memory mattress was finally delivered yesterday evening and he seems more comfortable in the mattress.  He hasn't used the urinal, commode and he doesn't even know about the walker just yet so I don't know if he will EVEN use the walker.  He should because he is quite wobbly and can get very confused often enough to warrent use of a walker.  I will bring the walker up to him sometime today and see how he feels.  It may take him time to warm up to it same with the commode and urinal. 

I know what his issue is right now.  He still wants to be in control of himself so he is choosing NOT to use the medical equipment that we got him for ease and he is slowly coming to terms with the fact that he is quickly losing control of himself.  We have to give him time to come to terms with his loss of control on his own.  Unfortunately that may take a very long time.  I can imagine how difficult that would be for anyone who is in total control of EVERY ASPECT of their life to suddenly NOT have that control and it's not only a physical adjustment for them but more so a mental one as well which is worse then physical for them.

He continues to decline mentally.  Now referring to himself in the 3rd person, can't form full sentences or hold a conversation without getting confused, has difficulty remembering the kids, thinks we have more kids then we have and suffers from short term memory loss.

His physical declines continue as well.  He suffers with continued extreme weight loss, loss of appetite with little food or fluid intake, his complexion is totally off almost as if he has a yellow tint to his skin, he is extremely weak and always suffering with excessive fatigue, loss of balance and his equal librium is off.

In some strange way it is getting easier to care for him but still extremely difficult to watch him decline so rapidly.  I have this feeling deep inside me that he may not be with us for Christmas which is 63 days away!

Friday, October 21, 2011

10 Happy Faces vs. 5 Sad Faces!

Some of you know that my husband is a Stage 4 cancer patient but some of you may not know that we also have 7 year old Autistic twin boys that are in the 1st grade.

When the boys started 1st Grade CJ came home with a letter from his teacher explaining the rules of the classroom, supply list, prep and gym days, student expectations and parent responsibilities and such and so on.  One of the classroom rules was that ALL students that get 10 happy faces on their monthly behavior report WILL be able to participate in the monthly birthday celebration at the end of each month!!  AWESOME, now I have something positive to work with here!!

Yesterday he brings home a notice that says ALL children with 5 or more sad faces in their monthly behavior report will NOT be able to participate in the monthly bithday celebration at the end of the month and they will also NOT be able to go on the scheduled field trip that month!  WTF is up with that??

So I call the school today in an attempt to talk to the teacher and she was in class so I left a message for his case manager (special ed teacher) Ms C.  She calls me back and asks what was up so I tell her....

I have to say something about this new rule...I think it's wrong.  Here is what the teacher now did..follow me if you will...

You told him at the beginning of the year that "if you get 10 happy faces you could participate which is very positive."  Now you are telling him "BUT if you get 5 or more sad faces, regardless of how many happy faces you have, you WILL NOT be able to participate!"  We are talking about an Autistic child who is watching his father die every single day essentially and he feels it's his job to save his father's life!  Not to mention that CJ works 2 to 4 times as hard to be 1/2 or AS good as the other kids in that classroom!  So now what you have done is taken his positive away from (10 happy faces) and TURNED HIM COMPLETELY AROUND and said "but wait 5 or more sad faces it's a no go!!  You're PUNISHED!"  which is NEGATIVE!  So instead of him focusing on positive, he is now turned completely around and focusing on the negative which is NOT GOOD for CJ! 

I understand why the teacher is doing this but come on....isn't that a bit extreme???  We're talking about a 7 year old Autistic 1st grader that walked into that classroom with some minor behavioral issues that are CLEARLY in his IEP AND he is watching his father die right before his eyes so now we want him focusing on even more negative???  Does that make sense, not to me it doesn't!!

After we went back and forth a few times I asked if there was another consequence we could come up with for CJ and not a PUNISHMENT that he won't be able to participate in the parties because his father is dying!!!  Which WE ALL know is how CJ will think!  Needless to say it's in the process of being handled...I hope to have better news on Monday.

My day so far...

Woke up at 6:05am and attempted to go back to bed with no luck!  Heard a loud THUD and CRASH at 6:15am and FLEW up the steps.  Checked the boys and they were fine!  Turned and looked down the hall and the house was still dark.  Walked down the hall toward Pita's bedroom and turned on the hall light then the bathroom light and looked in his room and the bathroom and that's where I found him laying half in and half out of the bathtub.  I immediately helped him up and he yelled at me a few times "I'm ok and I can get myself out of here" stuff like that but I insisted on helping him out because he obviously wasn't able to get himself out of there himself. 

As I was lifting him he was wimpering "Mommy, I can't, Mommy, I'm ok, Mommy I can't even go to the bathroom myself."  I hugged him and kissed his head and he finally went to the bathroom and then I got him in bed and he asked for a cup of tea.  I went downstairs and called the nurse.  They said they are going to send someone out to check for further injuries.  Made him his tea and brought it to him with his meds and Ensure.  Got the boys up and fed, dressed and out and I finally was able to get my shower. 

That's when I saw the damage to my shower.  There are now cracks in the walls that need to be fixed or the walls need to be replaced.  There is a huge crack over the shower head because the shower curtain rod came crashing down and it's force tried to take the wall with it.  All I have to say is THANK GOD it wasn't a tile tub and shower or he would have been a bloldy mess!!  He most certainly would have obtained more injuries then he did!!

Took my shower as best I could trying to not get water everywhere which is almost impossible to do, checked on Pita once more and he is ok.  I am now waiting for my pants to dry in the dryer so I can take a quick run to the bank so that I can get some cash for a space heater, 2 new ceiling fans with light fixtures and a night light for Pita!!

I hope there is NOT a head injury!

Thursday, October 20, 2011

Quiet day today.

Pita had a very sleepy and quiet day.  He slept til 3 o'clock this afternoon...Mr. Lazy Bones!!  LOL

Anyway he ate half a turkey and swiss on potato bread sandwich and drank a glass of milk and now he has love in his tummy.  The home health person came today and basically watched him sleep for 2 hours.  lol  At one point he said to her "why don't you go downstairs to have a cup of coffee with my wife and get the hell out of here so I can go back to sleep!!"  I was CRACKING UP!!!  Mr Feisty is making a sudden return!!  Poor man is so tired, he spends most of his days sleeping.  I often wonder what or who he is dreaming about.  He has now started referring to himself in the 3rd person.  He told me the other night "I wanna lay down but this guy Chuck just wants to go to sleep!"  I told him to lay down if he wants and to let Chuck go to sleep if he wants.  I don't know what that means exactly but he was happy that I just went along with him.

Cub Scouts with the boys tonight and after that I will check on him and give him his meds and if he wants a little something to eat I will get it for him.

Wednesday, October 19, 2011

Whoa what a day!

Ok I admit it...I had to go to welfare to ask for food stamps today and it wasn't so bad there.  I thought I was going to be there ALL DAY like normal but it only took about an hour.  The case worker that took my app was actually very understanding of Pita's health issues and our financial situation.  Unfortunately she thinks that the boys will be elegible for medicaid and our food stamps won't be much!  Okay so I wait to see what they approve me for if any at all!

When the boys got home from the B&GC today Pita was downstairs with the nurse and he looked exhausted.  the boys said hi Daddy and gave him a hug.  Finally he asked me if I had any lunch meat in the fridge and I got him some turkey and swiss from the store and made him a sandwich.  By the time it took me to make and bring him his sandwich he completely forgot he ever saw the boys and he asked to see them.  So I went in and reminded them that Daddy's mind doesn't work like it used to and asked them to go to him and say hi and give him a hug again!  After they left he asked me about all the other kids that are in the house.  I asked what kids and he said "all the other kids that are running around this house!"  I think he may be seeing kids from the other side.  I asked if his mother or grandmother have ever come to see him and he said 'no" and I said "well if they do, don't be afraid to talk to them, they want to see you"  My poor Pita is drifting further and further away from me and it's killing me to keep my game face on!

I hope he has a good night sleep and a better day tomorrow!  Love ya Pita, see ya in the AM!

Tuesday, October 18, 2011

I hope he stops worrying

My poor son thinks he is going to catch cancer from his Dad!  I told him that there is no way that could happen and he said, "but I had my tonsils out, isn't that like catching Daddy's cancer?"  I said, "nope, two totally different things.  You had your tonsils removed because they were enlarged and preventing you from sleeping good at night.  Daddy's cancer started in his kidney and spread to his lungs and his brain.  No way you can ever get it."  I don't know if he believes me but at least I was able to calm him down and sing him to sleep.  Sleep well my angel!

I wish my kids didn't have this burdon to carry with them.  I HATE CANCER!

Hospice transition complete

While the home health aid was here today with Pita, the social worker came and we went through the Hospice transition paperwork and it is now complete.  He is now on Hospice as of today.  I have to admit I am still sitting here asking myself if I made the right decision and I know I did out of love.  I just want him to be happy and comfortable.  He actually admitted to me tonight when I brought him his dinner that he actually feels a little better.  I hope he is happier now that he will be getting even more home care.  We're gonna be ok!

I hope he eats his dinner.  He wanted half a bagel with cream cheese and jelly.  Maybe he will eat it because it's sweet.

G'nite Pita, sleep well and I will see ya in the morning!

Made him smile today!

Ok so his home health person FINALLY showed up at 1:46 this afternoon.  She was suppose to be here at 11:30 this morning GGGRRR!!  Anyway now that she is here I took her up to meet Pita and I start cheering that he ate his breakfast and drank his tea and took his meds and I ask if there is anything else he wants and he asks for chocolate milk and I say to him "ok I'll get you some choc. milk but while I am gone don't pull out that stripper pole!" and he rolled his eyes, just smiled and ALMOST laughed!  The nurse bust out laughing!!  I thought it was funny too!!

I hope he enjoys his chocolate milk!  ;-)

10/18/11 Tuesday morning!

Boys were suppose to be picked up at 8:03am ... it's 9:40 and still no bus!!  So I had planned on going to welfare today to apply for food stamps and I don't think I am going to be able to make it early enough to get home at a reasonable time!  GGGRRR  Why did this have to happen today?

Once they are on the bus I will make Pita some breakfast and bring it to him and spend a little time with him if he wants me to.  I am trying to get as much time in with him as possible.  I also have to wait for the Hospice nurse to call and set up a time to come out and visit.  I hope someone calls today to set something up today.

I could barely sleep last night because I kept thinking "did I make the right decision?  Is he going to hate me for this?  How is this going to affect the kids?  Will they grow up and think that I killed their Dad?"  So many questions and I know I made an "out of love" decision but still it's so hard!

Monday, October 17, 2011

Hospice doesn't mean the end....

It means better care!  Which is what I told the dr today on the phone.  I talked to the dr in length about what is going on at home and my feelings, how this is affecting my kids and asked what he thought.  He agreed that Hospice would be more suitable for my husband and he would help get it started ASAP.  Making a decision like this is worse than jury duty.  It's like having a person's life in the palm of your hands and blowing it away from you!

The dr told me that the mental status is very concerning and he absolutely thinks it's because the cancer is getting worse.  I don't want my Pita suffering anymore so now we keep him comfy and happy until he flys home with the angels.

The transition to Hospice should be complete tomorrow.

Who could be angry at you?

Dear Pita,  Today you lost your unemployment because they found out that you now have Social Security Disability because you are a stage 4 cancer patient.  I didn't rush up to tell you because I didn't want to upset you.  I know you were disappointed that it came to this but it was coming soon and we both knew it.  So it is what it is.  I DO NOT want you thinking for one second that I am upset at you EVER!!!  You didn't wake up one April morning in 2009 and decide you were going to have cancer that day.  You also didn't decide to get Stage 4 in Feb of this year.  These things happened to YOU .... YOU didn't make them happen!  How could I be angry at you for something you couldn't control.  I am angry at the disease, lord knows how much I hate cancer.  We have been dragged through the mud with this and still we just keep getting punched.  Well I am the "I gotta roll with the punches" kinda girl!  I will get us through this and WE WILL be ok!  I LOVE YOU ALWAYS!

Monday morning blues!

Morning!  I just got the boys on the bus and took Pita his breakfast and he was awake but not ready to get out of bed.  I knelt down by his bed and started rubbing his back and he shoo'd me away saying he just wanted to sleep!  So I left a little disappointed but I just said "Yeah, ok, I know." and left!  I can't even show him affection without him getting angry at me sometimes.  I hate cancer so much!!

I immediately came down and tossed his uneaten dinner from last night...put his untaken meds away from last night and put a call in to his dr for him to call ME and talk to ME!  Something has to be done!  I may have to make the hardest decision I DON'T want to make.  Stop all active chemo treatments and put him on hospice care and see if he will start eating again!  Let's see what the dr says!

Sunday, October 16, 2011

Quiet Sunday....

Today was a very quiet day for Pita.  I tried to have a lazy day but it didn't exactly work out that way...oh well!!  At least the basement is getting done.  Boy what a difference 2 weekends does!!  It should be about 2 more weeks then the basement will be just about done!  Once the basement is DONE then the rug can be ripped up and we can get rid of that and then maybe after the first of the year I can re-do the basement and it will look better!

I have to call Pita's dr tomorrow and talk to him.  Somethings I want him to know so we can make a better choice as far as treatment.  I wish this wasn't happening to my sweety.  I want him to get better but at the same time I know it won't get any better so I just want him to be comfy and peaceful.  Let's see what the dr says if I can talk to him tomorrow...I will have my notes ready!

Sleep well Pita, see ya in the morning!

"Wanna Be" Lazy Sunday 10/16/11

Pita slept late today...I wish I could sleep late on a Sunday now but that isn't possible.  I want to be lazy but I just remembered a few minutes ago that I still have laundry to do today so I am hoping to be lazy about that as well as my day.  I may do it, I may not!  I may set the boys up with the Ipad and the computer and give them 30 minute turns each so I can get some rest!
We shall see!

Saturday, October 15, 2011

I had to share this.

I am sitting here with the boys and I am looking at the pics from the party today and CJ starts singing "Happy Birthday To You!" and we all started singing it together and finally CJ trailed off and stopped while I continued singing.  I got to the very end and CJ smiled and quietly said "and many more" then he said "I like that song!"

20 minutes ago he was curled up on the couch and he looked really sad.  I ask him if he wants to talk and he comes over and crawls in my arms and said "remember my plan about inventing the pliers and pulling the germs out of Daddy's body?  Well I have a long time before I go to college and I am afraid that I won't have time" and I said to him "honey I don't think it's your job or our job to get the germ out of Daddy's body because you aren't old enough yet and none of us know exactly how.  I don't want you walking around thinking it is your job.  I know you want get those germs out but we just can't and that really is the dr's job to find a way to get them out and even they can't.  I also don't want you thinking it's just your responsibility or job to do what you want to do.  I want you to concentrate on school, get a great education and when you grow up and find the cure for Daddy's germs then you can dedicate that cure to Daddy.  Everyone you cure you can tell them "this is for my Dad, I am curing you because I don't want you suffering like my Daddy did!  How does that sound?"  He said "good"  Then I asked if he wanted Ice Cream and he jumped up for him yummy treat!

This is killing me!!  That conversation took all of 5 minutes and I wanted to burst out in tears the entire time!!

Pita Party!! ROFL

 After a horrible morning got Pita he slept most of the day and when everyone came and I went up to Pita's bedroom and told him that everyone had arrived.  He said "I'll come down!"  I told him he didn't have to but he insisted.  I got him dressed and he came down and he said "hullo!!"  When he saw his best friend Howard his face lit up like a Christmas Tree my friends!!  I almost went to tears.  Unfortunately his father couldn't make it because he had bronchitis and they were sad but some things just can't be helped.  He only stayed down for a little over an hour but we had a wonderful time.  My cousin the Reverand Jim had family mass for everyone because that is what Pita wanted.  It was beautiful!  Here are a few pics from the party (excuse my fat a$$)

His Memory Lane Cupcake Tray

Pita and the boys

His BF Howard and him

Pita and Uncle Walt

Cousin Franny, Pita and her husband Jim

We're a family of Pita's!!  ROFL

My sil Peggy and Pita

Still love my Pita!

Just for fun!!  :-)

Today is the day we are celebrating Pita's 60th birthday.

Brought Pita his breakfast (egg McMuffin), his tea and meds and he was sleeping.  I looked over and he never took his meds last night and I asked if he was in any pain and he said "Nah, not too much."  I said "ok" and left the room.  Just another quiet morning for him.  He may have been up quite late and is just catching up in the sleep he didn't get overnight.  I think his sleeping pattern is all off and that's ok...he needs to be able to sleep when he wants and be awake when he wants too.  I hope that when he does wake up later today and everyone comes today for his birthday that he is able to be awake, stay awake and enjoy himself.

I know we didn't get a chance to celebrate your birthday Pita last Sunday when the party was originally planned because you were in the hospital last week but we're making up for your special day today.  Happy Birthday Pita....may you have a wonderful peaceful day!

Friday, October 14, 2011

Got Pita a treat!

Tonight my sil Peggy treated me to dinner for my birthday at Longhorn restaurant and when Pita was healthier we used to go there and he would always order the White Cheddar Stuffed Mushrooms as an app and he would devour them in practically 1 bite!!  So I got an order of them to go for him as well as his requested Phil's Cheese Steak and when I got home tonight I put 2 of the mushrooms on a plate with 1/3 of the steak and he was so happy!!  His eyes lit up like silver dollars!!  I am going to give him 2 tomorrow with his roast beef sammy at his 60th birthday party!  He will enjoy that!

I hope he remembers to take his meds and I am NOT going up there to disturb his sleep to check and see if he did.  I know you're thinking "but how could you not, he NEEDS his meds!"  No, not necessarily!!  He needs his sleep and that's more important to me!  It's there if he decides to take them which I am sure he will.

Oh and for anyone that would like to leave a comment, you can now do so because I fixed the settings!  I'd love to hear from you.

Gotta finish his cupcakes for tomorrow.  I am making Vanilla Malt Cupcakes with Chocolate Malt Icing for his birthday because he LOVES malt!

Sleep well Pita....see ya in the AM!

I won't do that to my kids!

I was visited by Phila Corp for the Aging (PCA) today so that I could sign my husband up for home health care as long as he qualified and we were talking and when she asked "is your husband's name on the deed?" I had to stop her in her tracks and ask a question "does it make a difference if his name is on the deed?" and she said "Yes, the state runs a state recovery program" 

I said "well that's ok because his name is not on the deed so we should be fine right?"  She said "Not exactly."  She looked through some forms and what she said to me was SHOCKING to say the least!

She said that as his spouse, the lean would still be put on my house and the state wouldn't bother me as long as I lived in the house until the time of my death.  At which time the kids would be held responsible to pay back the state through the state recovery program.

I said "so what you're saying is, my kids will be punished financially because their father died from cancer and the state came in and took care of him?"  And you also want me to sign them into debt to the state?????  OH HELL NO!!!!!!!"

She said "well the boys would be able to file a hardship claim at that time depending on their functional level at that time and possibly get approved"

I told her that "my kids were indeed Autistic but they were high functioning and would probably get turned down for the hardship claim because they are going to school and they WILL go to college and they WILL get a good education and they WILL get jobs and CHANGE THE WORLD!  And you want me to punish them by leaving a financial burdon to pay back the state for their father's death?????  That is wrong on so many levels I can't even begin to tell you!!  I think we need to stop right here and I won't waste anymore of your time because I DAMN SURE won't do that to my precious beautiful boys!!"

So much for state help huh?


I went up to check on him a little bit ago and found that he hadn't eaten his breakfast or taken his meds.  He did drink a few sips of tea but nothing else.  I asked if he wanted to take his meds and he said "I thought I took them"  I said "Nope, they're right here.  If you don't want to take them, I will leave them.  If you do, I can get you some water."  He took them and said that all he wanted to do was sleep.  I smiled and told him "I hear ya, I want to sleep too haha"

I am sitting here waiting for his nurse to come and check him out.  I am also waiting for the Philadelphia Corporation for the Aging (PCA) to come and evaluate him for home care.  I wish I was 60 then I could get some home care too ROFL!!

His social worker called and said that the home health people haven't been approved by his insurance yet and they are waiting for approval.  Knowing my luck they will deny it because he already has a live in home health person here....ME!!  I will probably get a really nice letter from them saying "Um just do it your damn self!!"  FUCKERS!!  Always gotta be an insurance hold up!! Heaven forbid they just approve ALL care of a dying man!

Just went up to let him know that his nurse is on her way soon and he was watching tv.  He asked me to turn off the tv so he could go to sleep.  I wish she would have been here earlier so that we didn't have to go wake him up when she gets here.  Must be frustrating to have people waking you when all you wanna do is sleep!!

worse then I thought

Got the boys on the bus and went in to make Pita his breakfast, tea and get his meds.  Took them up to him and when I opened the door...BOOM the smell hit me to the point that it almost knocked me over.  Attempting to hold my breath, I trudged through it and said "good morning sunshine, bad night?"  He just shook his head yeah and I said "well I have breakfast for you, another jiggly sunny side up egg with toast and I made you 2 sausage links, yummo.  Only I have to clean this up first"

I grabbed my rubber gloves and tried my best to clean it up and get it out of there so he wasn't smelling it all day.  Bagged it up and took it out to the hallway and went and washed my hands then went in and told him that I cleaned it so he wasn't smelling it all day.  He looks so sad and embarrassed but I don't think he could help this.  It really was a river all over the place and so bad that his clothes are going to have to go in the trash.  I don't even know what his bed looks like because he wouldn't let me check him in the bed.  I just left him there and came down to call for the nurse to come help him.  I hope she can get him up and showered and then I can change his sheets and put a bed pad down for him.

I hate cancer!

10/14/11 Unpleasant surprise this morning

I woke up at 6:40 this morning and went to the bathroom and there was a pair of Pita's underwear laying on the floor next to the trash can and rolls of toilet paper surrounding me while I did my business.  I went to pick up the underwear and that's when I realized they were loaded with stool.  I was horrified at first and almost got sick but I composed myself quickly and put them down, washed my hands and found a bag to throw them away in.  Poor man probably had a very rough night and was just too exhausted to deal with it himself after cleaning himself up.  I have to get the boys on the bus soon for school and then I will make him his breakfast and go see if he is ok.  I hope he took or takes a shower before we go to the dr this morning.  Geez, I hate cancer!

Thursday, October 13, 2011

I believe in miracles....

Where you from, you sexy thing you!?  This is the song I was singing to my Pita when I gave him his nightly meds tonight ROFL!!  I had to make it silly tonight in an attempt to make him smile.  It didn't work but at least I got a good chuckle!!  I told him I knew he had a stripper pole hidden in the closet and he wasn't allowed to have any wild parties tonight while I was asleep!!  ROFL  He just looked at me as if I had lost my mind.  Hey you can't lose something you never had!

I was proud of him because not only did he eat his jiggly sunny side up egg lol and toast this morning but he also ate a bowl of chicken noodle soup for dinner.  No Ensure and not much water but at least he ate something today and that makes me happy that he has love in his tummy!!

The rest of his day today was quiet and I imagine very achy because of the weather.  I hope he is able to make it to the dr tomorrow for his follow up.  I told him if he doesn't feel like going then I will call the dr and sense in forcing something he DOESN'T want to do!

Good night sweet peacefully!

Could be time for transition?

Pita's nurse was just here and I explained how tired he was all the time and his lack of fluid and food intake and his continued loss of quality of life and she said he could be getting ready to transition to full hospice care.  Hard to hear those words but I just want what's best for him.  I don't want him to suffer anymore in any way.  I want him CURED and I can't have it!!  This kills me to see my husband this way, suffering day by day, no longer working at the 1 job he truly loved, NOT living his life on HIS terms!!!  Why can't cancer get cancer, suffer for years and DIE??!!!  I just don't understand why it has to be my Pita!!  I am exhausted from just watching him suffer the way he is.  He can't even move in his bed without experiencing any pain. 

I go to bed every night and ask GOD to ease his suffering somehow but I think he didn't hear me and someone took the message but forgot to give it to him.  So I sit and wait to be heard!

I just have to say something!

My friends have you ever had a deep feeling that you "just have to say something!" or else you can't find peace and move on?  Well this is one of those times so please bear with me.

To R.

The last time I spoke to you was January 2nd 2011 and you were too busy chewing me out for not calling you then you were understanding that I have not 1 but 2 ADHD/Autistic 7 year olds that take up a very huge portion of my time so forgetting to "call" unnecessary folks is for me .... well .... necessary!!  Besides the fact that I did not have your phone number and your kids are all grown and the phone goes both ways.  I don't expect much from you because you never gave anyone in this family a reason to expect anything more from you!

Now on to why I am really writing this to you.  You found out that your brother was in Stage 4 of his cancer battle in early February because I know for a fact that you were told by both your sisters.  It's now October 13th and you have yet to pick up the phone to find out if he is ok, in pain, dead or alive.  WOW you must be really busy to simply forget your own only brother!  Your brother is so hurt by your failure to reach out that it kills me to see him so frustrated at you.  But no worries he has so many more family member that make up for your epic failure!

I want you to remember this....when you do finally remember that you have a brother and he is dying that it may just be too late.  I want you to ALWAYS remember that!  As a matter of fact I hope GOD himself heals you and gives you prosperous health for the rest of your existance so that you can live with the guilt that you NEVER once reached out to him when you had ample chances!!

So when your brother takes his final breath surrounded by those that love him more than the air we breath, forget he was your brother because he no longer is.  We have moved on but I just had to let you know where you stand in our life.  It's my duty to protect my Pita from scum like you and I am damn sure going to make sure you never again infect our life with your pitiful existance!  Oh and don't bother coming around after he is gone because you are NOT welcome in my home, my life or my kids lives!!  We want nothing to do with you....I teach my kids that if you hang with dogs, you end up with fleas!!  They don't need your fleas!

From this moment on I wish you good health and loads of guilt for a very long time!

WOW he ate the whole thing!

Stinker!!  I am so proud of him, my Pita ate ALL his breakfast!!  I made him a sunny side up egg that jiggled (Yes I am proud of that!! LOL) and when I brought it up to him this morning I said "Morning love, I have your breakfast"  He said "what is for breakfast?"  I said "I made you a sunny side up egg and a slice of toast!"  He said "oooohhhhh!"  I said "look it jiggles too, which means you can dip your toast in it!!"  He was thrilled.  It's the silly little things that we get excited about I guess!!  hahahaha

I left his breakfast, tea, Ensure and meds there for him and I just went up and the stinker ate the whole thing!!  YYYYAAAYYYY!!!!  He has love in his tummy and I am happy!!

Poor guy has lots of aches and pains all over his body because it's raining outside and I told him he should feel better in a little bit because I gave him his pain meds.  He just wants to sleep.  Rest up Pita!  Love ya!

10/13/11 Happy Thursday.

Well I finally got Pita to eat something last night.  I brought him a small amount of chicken noodle soup, a few crackers and an Ensure.  I went up about an hour later and he was proud of himself that he ate and drank all his stuff.  I was proud of him also.  I took his plate and tucked him and told him I was going to see him later for his evening meds and he said "ok, g'nite Pita!"  I said "Good night my love, see ya soon!"

I went up about 2 hours later with his evening meds and that's when I heard the wrath of Pita!!  ROFL  I walked in quietly and said "Hey there, time for your meds!"  His response was "AGAIN, How much friggin medicine are you giving me?"  I told him "this is your evening medicine and if you want to take it later I can leave it.  If you wanna take it now I can help you."  He took it but questioned everything so I just explained what everything was and I told him "now I will get out of your face and you can sleep for the night!"  I hope he slept good because he hasn't had the greatest nights sleep!  Poor guy!!  I hate when I have insomnia and I could imagine what it is like for him when all he wants to do is sleep to help the pain!

I had to go out and clear out all the cigarette butts out of the filthy ash tray outside my house the other day because I caught him digging in it and grabbing all the butts and lighting them and smoking them.  So there are no more butts to smoke so what does he do....he asks the neighbors I CAN'T STAND if he can have a cigarette.  After he smoked that and went upstairs, I asked if they could NOT give him anymore cigarettes because he is stage 4 and he DOESN'T need them!  She understood but I hope she does NOT give him anymore.  If I have to put ALL my neighbors on notice to NOT give him anymore smokes I will do it in a heartbeat!!

I hope he has a good day today.

Wednesday, October 12, 2011

no offense but.....

Ok it seems that I have offended someone with my nickname Pita for my husband.  Here is the thing...if you are offended by this then simply don't read or follow the blog, you have the option to just close this site.  This blog is not about what I refer to him as or how I will remember him, that's for ME to decide and live with!  It's about my daily struggles with caring for a dying cancer patient and how hard it can be on us as caretakers.  I want to share what I go through on a daily basis and hopefully let others know they aren't alone!  My relationship with my husband is comfortable enough in that we use this term of endearment for each other. 

If you think for one second that I don't love my Pita...WRONG!!  No one has a right to pass judgement on me, my words or my life until they are willing to come here and live my life for a few days.  My journey is about me helping the man I chose as my husband and life partner (til death do us part) live the rest of his days in comfort.  I have been referring to him as Pita for longer then the internet has been around and if you don't like it then you can choose to leave the blog and not follow it.  I am NOT changing 1 insy winsy word in MY BLOG, it's my space, my life, my feelings, my words, my journey!!!

10/12/11 NOTE TO SELF!!

Don't cry in front of kids or Pita today!!  Strength is NOT an option for you, you HAVE to be strong for them.



Today is my 44th birthday and what I want for my special day I can't have!  I don't want a cake, I don't want a party, I don't even want presents!!  I want my Pita cured of cancer!!  Today is the first birthday in my entire life that I don't want it to be my birthday.  I don't care to have a birthday today because I know I have a better chance of having another one then my Pita ever will!!  That's just not fair IMHO!!  It sickens me to no end.  I woke up this morning wishing it was another day....ANY OTHER DAY except my birthday!

Last night was quiet and he had an ok day thankfully.  Not much pain which is a good thing.  I continue to bring him his meals and if he eats them, good....if not, oh well I tried!  I won't force anything on him because he is still in somewhat control.  I just wish he would see that food and fluids are going to make him feel better and put something in his body.

Yesterday I had to run out to school to pick my son CJ up from school because he went into sensory overload in the classroom because of the noise and he stuck a crayon in his ear and when they called me there was still a piece lodged in his ear and no one could get it out.  I can happily report that when we were waiting for the bus to go home it popped out and I took him to his pediatrician (he begged not the ER) to have his ear checked and all is well.  I think he learned a major lesson yesterday.  I hope!!  LOL

He also had a little conversation with his Behavior Specialist Ms. C at school.  She was talking to him and asked if he was ok and having a good day and he said to her "My Daddy is dying and the dr's can't get the germ out of his body anymore so I have to invent a pair of plyers to go into Daddy's body and get the germs out!!"  This is simply breaking my heart that this 7 year old innocent child is spending time thinking of how he can cure his Daddy of this demon called cancer.  NO CHILD of any age should be having these thoughts!!  Why does this have to happen?  This poor boy is probably thinking that all the other kids in school have Daddy's and none of them are sick so why does his Daddy have to be the one that is dying??  He already knows he is quite different from the rest of the kids because of his Autism but now he will be even more different because he won't have a Daddy like everyone else.  Not that he knows if these kids do or don't have Dad's at home but this is probably the thought process of his 7 year old mind!!

Again today I brought him his breakfast, tea and meds and he refused them.  I hope he wakes up soon and changes his mind and eats his breakfast, drinks his tea and takes his meds.  I know if he does, he will have a half decent day. 

So today if I can't have a cure for Pita, I want him to have a comfortable day....that is my birthday wish!

Tuesday, October 11, 2011

10/11/11 AM

This morning was peaceful for Pita.  I brought him his breakfast, tea and meds at 8:15 this morning and he refused them saying he just wanted to sleep.  I left everything in his room in case he got up and wanted them.  About an hour later I went up to go potty and he was rustling around so I went in to check on him and he got up to go to the bathroom.  He was there for over 15 minutes and when he got up he got angry at a towel because it had nothing on it.  I just chuckled and agreed!!  DAMN TOWEL!!  He went to his room and ate a little bit of the pancakes and drank his tea and took his meds.  He wanted me to find his tv remote so I did and I got him back in bed and he was resting comfortably when I went to the market for a few things.

The nurse that came yesterday told me that he is still "pre" hospice but with the way things are going I think he could be transitioning to full hospice care very soon.  I can't stand seeing this man who lived life being the foremost authority on EVERYTHING (in his mind) now sadly grasping for anything.  OMG I can't stand this anymore.  I'm walking around with a prepetual head ache that won't go away and I have cried so much my skin stings when I cry...I had no idea that the human eyes could hold so much water!

It was so painful to watch him this weekend slowly losing his mental capacity more and more every single day!  The boys are noticing that Daddy is slipping away and he isn't talking right so instead of them giving me a barrage of questions that I either couldn't understand or answer, I sat them down and told them.

Monday, October 10, 2011

10/10/11 Evening

Boy what a day!  Pita is now having BMs and either not wiping his bottom, he can't reach due to pain or he is not remembering he has to.  I had to clean him or a mess up a few times.  He is slowly slipping away from me and it's killing me inside to watch.

He was sitting on the couch tonight when the boys came down after their bath and he told them that they needed to get ready because tomorrow was a very important day.  I asked what was important about tomorrow and he said to me "tomorrow is 1 year of the World Trade Centers!"  I said "honey that was 10 years ago." and he had to process it in his mind and he said "I know that but it's 1 year since everyone died there!"

Thank goodness I was upstairs when he so kindly put the boys to bed for me.  I got him settled afterward and went to go check on the boys and their door was locked from the outside.

He ate nothing today but drank 1 ensure, some chocolate milk and water.

I understand that the dr's and nurses and social workers see him and think he isn't quite hospice ready just yet but I think that day is fastly approaching.

I hope tomorrow is a better day for him!


Today I just didn't want to get out of bed this morning.  I am so tired lately, I can hardly roll out of let alone get myself up out of bed but I got people who depend on me and I HAVE TO get up.  I got up and made Pita his breakfast and tea and got his meds and Ensure ready. 

I brought it to him and I walked in and said "morning" and he just grumbled at me.  I told him "Sorry but I am not leaving until you take your meds at least.  I gave you everything yesterday and left and when I came up later I found out that you never took your meds and that threw your schedule all off and I was up til after midnight waiting to give you your meds.  Not today, so take them and I will get out of your face!"   I turned the bedside light on and he started screaming at me "will you just let me get up on my own!"  I said "I am letting you get up on your own but you HAVE to take these meds before I leave!  Sorry Dude!"

Ok so maybe I wasn't in the best of moods because I really wanted to sleep late and couldn't.  I don't feel well and I just wasn't in the mood for his shit this morning....I tried to be nice but it wasn't successful.

Long story short, he took his meds FINALLY and I changed his sheet while he was in the bathroom and put towels down on the bed because he is now having BMs and not wiping.  I don't know if he can't, it hurts or he is simply forgetting.

I told the nurse everything when she visited and she checked on him and he seems like he has good spirits.  He told her about his cancer and asked her for a cure.  Sadly there is no cure because he is stage 4.  I think he is just so tired of being sick and he is having a hard time resolving the fact that he is no longer the person he used to be and this is his existance now yet at the same time he still wants to a cure and live his life the way it was pre-cancer!

I can't tell you how painful it is to see the person you love suffering the way my husband is.  His mental health is beginning to be a problem.  He asks me if I have to pick the boys up from school on the weekends.  We were sitting watching Star Wars on Sunday and he looked at me and said "this would make a great movie!"  His mind may be slipping away from the pain meds, the cancer or a sudden onset of dementia due to this demon.  Unfortunately I am starting to believe that the treatments are worse then the disease at this point.

He has pre-hospice home nursing care a few days a week and they monitor his health care and treatments.  They are the ones that communicate with the dr and they determine together if he is ready to transition to hospice or not.

We shall see what this afternoon brings.