Silly Bed

Cindy:

Yesterday marked Mom's 8 month anniversary since being told she only had 3-6 months to live. For the past month or so her balance and neuropathy have been pretty bad so we decided to forgo the comfort of a regular bed for the safety of a hospital one that has rails.  

When I first suggested it, I felt it was a good idea but as the day progressed I wondered if this would make her feel defeated and more inclined to give up hope.  Eventually I just asked her if she really wanted the bed because I didn't want her to feel pressured into it, to which she responded by laughing and said 

""Number 1, this wasn't your idea it was mine, so stop trying to take the credit".

"Number 2, I'm not giving up, but this bed will make it easier for me to get up without your help."

"And last but not least whether I sleep in a  regular bed or hospital bed it's not going to have anything to do with when it's my time to go, so stop worrying".

So with that said we had her hospital bed delivered and the whole time she joked around with the kid putting it together for her.  It couldn't have been more then 20 minutes I was out of the room to feed and change the baby and by the time I came back mom had fed him and found out his whole life story. It's funny how mom always has had that affect on people.

I want to tell you that made me feel better about my decision to order it but it didnt. It wasn't till the kids came home from school and what I thought would sadden them to see did the the exact opposite.

They were super excited about mom's bed having the ability to go up and down and Noah negotiated sleeping arrangements pretty quickly.  

She then made a schedule allowing each of them the chance to sleep in it one night. Ironically enough thats's all it took to feel a little less sad about something as silly as a bed.

  

Next Sunday.....

Cindy:

Mom woke up at 8am this morning still having pain in her arm, but excited and ready to go to 10:30 mass. By 10:00 though, her plan had changed we would go to 6:00 mass instead. She made herself a cup of coffee and ate a few bites of coconut bread . Right away her stomach started to hurt and she started feeling like she was going to throw up so she went to lay down. I'm really starting to feel like not getting the chemo is allowing everything that's been so well controlled over the past few months, to spiral out of control. The pains been worse then ever this week, nausea & vomiting after everything she eats has become the norm again. A couple hours later Mark, a long time friend of our mother's arrived unexpectedly which is always nice because he always seems to manage to raise her spirit. He quietly sat with her massaging her arm for over an hour and meditating. I took advantage of the fact he was here, to sit outside and watch the kids play and enjoy the warm breeze something I don't really get to do that often these days. Several neighbors passed by to ask how she was doing since they haven't seen her all summer, each with the same sad look on their face as they asked, making it hard for me not to break down and cry. It's funny we've lived here for over 3 years now and I've have never really gotten to know any of my neighbors, but mom being the social butterfly that she is knew all of them by first name nonetheless, young,old,single,married, what they did for a living. Within the first month of moving in she knew everyone and everyone knew her from the neighborhood or school. They all asked me about her with the same empathetic look on their face, curiousity inciting the small talk I'm sure. But as each neighbor came and went my reply became more and more of an auto response "She's doing good" just to keep the conversation to a minimum and me from crying in front of the kids. After a while honestly all I wanted to do was watch the kids play and not think about it if even for a little while. When she finally woke up at around 7 tonight she was upset she'd missed mass for the 2nd Sunday in a row, she took her medicine and went right back to sleep. Saying

 "I guess we'll try again next Sunday"....

Birthday

Connie:

Today is a day I never want to forget. After a long and stressful week, I thought I was looking forward to the massage I purchased on groupon....
While the massage felt great, I still felt stressed and tense. I think because I was dreading this birthday...and what this year will bring. Then you called and bribed me with my kryptonite... food.  And like always You won. I got to your house where your kids accosted me with kisses, birthday cards and gifts. I love how Noey insisted on giving me his toys. What the heck am I going to do with a Spiderman gun, superman action figure, and despicable me figures??? The best was how mom lit up when I read her card. When I came in the house it felt like I went back in time to our childhood home and mom's restaurant. I saw mom's hair done and her nice outfit and it was amazing. I think I was tempted to pick her up and twirl her around.  Being surrounded by the people I love most in the world, good smells, music and laughter was more relaxing than any massage. Even when it got awkward and we cried savoring the moment it was the best birthday I have ever had. Thank you sydibear for taking my fear and anxiety away. This is a night I will never forget,  I love you.

Cindy:

Connie, I can't believe 26 years ago today you came into this world and changed my whole life.  The day mom brought you home it was like you were my own little doll that cried, needed to be fed and played with all at the same time. Mom would always tell me "When I'm not here your her second mommy so take good care of her."  I guess it just stuck and even though I'm only 10 years

4 months older then you :-p.  You'll always be that little doll, mom brought home.

I'm so glad we had last night and it meant as much to you as it did to us even though we didn't go big like we usually do it was a night I won't soon forget. Love you more then life. I win!

Pain!

Cindy:

3:34am in the morning,  I hear someone screaming in a whisper if possible, "Pain!!! Pain!!"

 I kept hearing the same words over and over again "Help me!!" followed by mom's moaning.

At first I thought I was dreaming, but for the baby monitor that vibrates when it senses motion in her room. Then I heard Connor's voice at the bottom of the stairs "Mom!! he screamed. Mama's crying she needs your help"! I quickly made my way down the stairs to her room, "Mom, are you ok?" I asked.  She said "I've never felt this way before, the pain I'm feeling is excruciating and all over,from my toes to my head, even my bones hurt and I'm so cold."  I gave her 8 mg of Dilaudid and covered her in extra throws and blankets while I sat there next to her, I rubbed her head waiting for about 35 minutes while she softly cried waiting for it to kick in.  Finally, I gave her another 4 mg because 8 just wasn't cutting it. She said "Call your sister and brother, I need to talk to them."

I tried to explain to her it was 4 in the morning but she just kept repeating for me to call the two of you. She said she didn't know if this what it felt like to be dying but if it did, she didn't want to die without saying goodbye. I tried to reassure her that she wasn't dying and that the medication would kick in soon and the pain would go away. But to be honest I wasn't sure, over the years I've seen firsthand so many people die of this miserable disease with their children,spouses,friends by their side while they moaned in pain or just never woke up from a restful drug induced sleep I don't know what to think anymore.  She kept begging God to make the pain go away and at one point asked why she was being punished? Which instantly made me think about what you had written the other day about feeling like you were being punished. I told her I didn't know why he does what he does but to have faith and soon her pain would go away. I tried distracting her by calling you, sorry about that by the way.  But sure enough it worked and after she heard your voice and hung up, within 10 minutes she was sleeping and pain free.

 But as I lay here next to her at now 5:28am in the morning, listening to her breathe I wonder to myself, 

"Why are we being punished?"

Connie: 

I was tossing and turning like usual when the phone rang. i saw the time and panic set in you said mom was in excrutiating pain and wanted to talk to me. She came on the line, chanting my name. She said she loved me over and over while she sobbed.i tried to think of something to say other than  I love you too but nothing came out. You got back on the line and told me To go to sleep. That she was winding down and youd keep me posted. We hung up and i stayed awake until my tears won sleep. My last thought was life sucks.....

My Numbers.....

Connie:

So I got a promotion at work that I probably shouldn't have taken. I chose to take it because I didn't want to regret passing it up. I feel like there is so much I regret already, I don't want to regret more. So I took it. The job is a  45 minute commute and a highly visible role. I start in less than a week on the 25th.The day after my birthday.

I'm turning 26 years old. Where am I in life? I don't own a  car, I don't own a house, I have mounds of debt, no kids, no wedding in the works, no social life, I don't have a rockin body and certainly don't lead the life of what I imagine most 26 year olds have. I spend my days off watching Netflix to numb and escape my reality and then feel guilty about avoiding my family. I go to work and I put on such a great show for my fellow coworkers who do not know about my personal life.  To them I probably seem like such a happy 26 year old. I feel like a phony. I laugh out loud at work and come home to ball my eyes out.

Next week I'm going back to grad school after having taken a 9 month hiatus after learning about moms cancer. I am so scared of juggling so much and moms condition becoming increasingly critical. I feel like I'm waiting for my life to fall apart. Like there is a countdown looming over every decision I make.

I find myself constantly wondering  where i'll be when she dies. Will I be in midterms? Will I be being reviewed at work? Will she make it to see my bday? Connor's bday? Cindy's favorite holiday,thanksgiving? Or mine,christmas? And if she does, what condition will she be in? Will she be too drugged to know I'm there? Will she still be mobile? What will her worst look like? Because I remember grandma in home hospice. I remember you feeding her baby food. I remember Gloria Estefan's cd playing on repeat for a week before she died. I remember her speech left her before her breath did. She was bed ridden and not responding to us. Watching mom deteriorate physically and mentally makes me feel like I'm being punished. Some people say its good I have a chance to say goodbye, maybe that's the positive spin on cancer I should take, but I'm not sure I'm getting a chance to say goodbye to the mom I grew up with. I'm afraid im dying with her, I don't feel like I'm really living.

Cindy:

Connie, 

Your one of the most beautiful, kindest generous, independent and responsible people I've ever known and I'm not just saying that because your my sister.  

It's interesting to me that when you look in the mirror this is what you see. 

Because when I look at you I see a determined young woman who studied her butt off, was an honor roll student all through high school and was working part-time at a dry cleaners so you could buy your own prom dress.  All the while all your friends were being picked up by drivers and shopping on Michigan Ave.  I see a girl who went to an Ivy-league college on a 4 year academic scholarship. Working 2 full-time jobs to pay off her car, apartment and pay all of her own bills without being a burden on mom and dad. I see someone who speaks 3 languages fluently, finds time to cook mom her favorite meals, while juggling a 70 hr work week, getting her Masters, and in a loving relationship with an amazing person who loves you. Still making time in her busy schedule to be the coolest aunt ever and take my kids to Key-lime Cove for the weekend even when your exhausted from a long day at work. As for your debt, think of it this way if it weren't for you, mom's dream of owning her own restaurant would never have become a reality. Your right though,this isn't fair. She got dealt a crappy hand, but knowing mom as well as I do, I don't see her folding without a fight anytime soon. You can always look at it this way, we're all here on borrowed time and when the time comes and we no longer have her here physically you'll still have me by your side to help you get through it. Love you more then life:-) I win!!!

This is who I see, every time I look at you...

A leader,world traveler, free spirit,nurturer,my sister & best friend. Because even though nothing changes, nothing will ever be the same again..

 

Wash,Rinse,Repeat...

Cindy:

I was taking a 10 minute shower between the baby napping and mom's visit from the nurse and found myself reading the directions on the back of the shampoo bottle and laughed. I thought to myself who needs directions to shampoo their hair? In that brief second I realized how these three simple words

Wash,Rinse,Repeat have become my life.

Although it's been well over a year since mom started getting sick,the past few weeks I've been feeling somewhat trapped in these 3 steps...

Sometimes forgetting that along with being our mother's daughter, I am also someone's wife, mother, sister,friend. 

I had been feeling sorry for myself, feeling that life's turned all about numbers for me..

17 months since the symptoms began

8 months since she was diagnosed and given 3-6 months to live

9 months I spent sleeping in her room

5 months since I stopped sleeping in her room and began feeling guilty about it.

4-5 hrs of restless sleep I get every night,
1 hr therapy once a week

Chemo every 2 weeks for 46 hrs

10 lbs lost 

8 lbs gained

$2000 for genetics testing

33.3% chance results could be inconclusive,

If positive 80% chance we also carry the gene.

If we carry the gene 50% chance we could also get stomach cancer.

21 days for results

8 weeks till next catscan, 

1 day till chemo,

Followed by 3 meals,3 snacks,

344 calorie benecalorie + 380 calorie boost plus =724 x 3 if she can hold them down= Success for the day:-)

18 pills

23 minute drive to and from the hospital, 5 hr chemo $11 parking, 60-90 min massage once a week,1 bag of hydration every 8 hrs, feeding the baby 6~8oz bottles of formula every 2-3 hrs, 10 diaper changes,59 minutes to wash laundry, 42 to minutes to dry,30 minutes to fold,7 days till next grocery delivery,14 till next water delivery, 1 day since last bm, 1 till next bowel regimen, 9 days till next survivor date, Then before I know it the months over and the countdown starts all over again. Hence Wash,Rinse,Repeat...

Although sometimes I complain to you how depressed and tired I feel and how sometimes I feel I'm living Groundhog Day over and over again and on those days would like to fill up the tank and drive until there's no road left.  I just want you to know that I still thank god for every minute of everyday that I have mom, my husband,the kids and you.  

Because believe it or not without all of you in my life, my days would be empty,without purpose and numbers would be oh so insignificant to me.

Catscan~4~

Cindy:

So every 8 weeks mom has a cat-scan of the abdomen, pelvis and chest. Today will be Cat-scan #4 since she started chemo just to make sure the cancer hasn't spread any further. It's kind of funny because you'd think by now we'd be used to the drill...

Don't eat for 3 hrs prior to scan, check in, the same tech always bringing us a barium to drink when she's always supposed to get Iv contrast, argue with the tech about it, have the nurse tell us that the tech was wrong and it's all in the ct order. Have the scan, then wait all weekend for the results wondering if this time will be the time your luck changes and it's spread. Wondering if the constant dizziness, inability to keep her balance, back pain & vomiting, you've noticed recently are related to what they may or may not find. Today is the first time I didn't go with her to a scan other then the weekend I gave birth to El when I missed Chemo. I've been trying to kick a summer cold which doesn't seem to go away and asked my brother to take her which was pretty helpful but for the fact he called me about 20 times in less then an hour to ask me about all of the things I'd already written down for him on a piece of paper from the directions to the hospital to the medications and surgeries she's had over the years. Not that I'm not greatful or appreciate when people volunteer to help, but sometimes I just find it's just so much easier if I just do it myself to make sure everything runs as smoothly as possible.

Cindy:

Update~Monday, August 19, 2013

We went to meet with the oncologist this morning who said everything looked good and that the chemo's doing its job. She's showing No Evidence of Metastatic disease which is awesome. The problem is mom has been experiencing a lot of dizziness and issues with her balance lately.  So the doctor decided to order an MRI of the brain to make sure the cancer hasn't spread there.  In the meantime she didn't give her chemo today, on the off chance it has.  Unfortunately, she's extremely claustrophobic so she'll have to wait until the 30th to have the brain MRI under anesthesia.  In the meantime she won't be getting any kind of chemo, I'm just hoping this 2 week break doesn't affect her too negatively. But on the up side she gained a lb this week and actually ate a whole meal in one sitting:-)

Kindergarten, The saga continues...

My mom was raring to go this morning where she got all the energy from I just don't know.  All I can figure is she must have been awake since 6am in the morning because by 630am they were both dressed and she was making everyone breakfast.  To be honest I don't know who was more excited Noah or mom. School doesn't start till 830am so after they finished eating they both sat on the front stairs talking while they waited for the school bus to come.  I almost thought she was going to ride the the school bus with him there for a minute ;-) but he rode alone and had plenty of stories to tell us about it when he got home.

Just like old times....

Cindy:

A few months ago I believe at the beginning of March, one morning that mom was feeling good she had decided she would come to school with me to pre-register Noah for kindergarten.  That day was so full of so many different emotions for the three of us. Mom was feeling a little anxious because she hadn't seen any of her co-workers since she'd been diagnosed and didn't know how they'd react when they saw the significant weight loss she'd had and how much she'd aged over the past year.  Noah was super excited to play with kids all day long and finally get to ride the big yellow school bus with his brother and sister, just counting the days until school starts. And all I felt was sad, sad not knowing if mom would make it to see his first day of kindergarten.  Watching her walk him around so proudly from teacher to teacher to introduce her favorite grandchild Noah, had me fighting back the tears. In the 5 years that my little Noah's been alive my mom has spent every single moment with him from the day she watched him be born until the day she leaves this earth the bond that they've created in this short time is unbreakable. And as sad as I know we'll all be when she dies Noah will probably be affected the most.  Ever since he could talk Noah's always called her Mama and me mommy. And up until last year he used to sneak out of his room after everyone fell asleep to sleep in her room because she would tell him stories and make the two of them pancakes in the middle of the night and watch Law & Order until he fell asleep. But as she began getting sick more frequently I tried breaking him of the habit by telling him he was getting to big to sleep with mama who wasn't feeing good enough to have company.  For a few weeks I thought I'd convinced him but then I came to realize that Noah was still sneaking down every night but now he would wake up early in the morning and tiptoe back to his room.

Well the point of the story is mom had decided the day we registered him for school which one of the three kindergarten teachers she wanted to be his, so there's Ms.T who's young, bubbly and sweet, Ms.S who's a constant screamer and doesn't help the kids open their hot lunches, so sometimes they go without eating, and then there Mrs. P who always has a smile on her face and loves to dote on the kids and all of the little kids love. 

Mom felt Mrs.P would be the best fit for Noah because she's the one who would be the kindest and most understanding to Noah when she died if she died while he was still in kinder. So she walked up to the superintendent who is also a close friend of hers and asked if he could grant a dying woman this last wish and he agreed. So every year the Friday before classes begin at 4pm sharp the class lists are posted at the front doors of the school letting excited students know who there teacher will be for the year.  My kids woke up Friday with only one thing on the brain "Can we go to school and find out who our teachers are?" "Sure" I replied "We'll go at 4 since it's only 6 in the morning. "Is it 4 yet?" My mom asked. 

At 4 o'clock we took the 5 minute ride to the school I laughed when my mom jumped out of the car like a school kid and ran over to the door with all of the other kids racing to find out who would be their teachers. 

The minute she turned around I could tell Noah hadn't gotten the teacher she wanted for him instead he'd gotten the screamer and for the first time in months I saw old mom the one that when she got angry you didn't want to mess with.  The problem was there was know one to talk to because the school was already closed. Mom spent the entire weekend upset and said she would go to school first thing monday morning and get this taken care of. I told her to let it go but she insisted I honestly didn't think she would go but early this morning she was up and dressed she even put on makeup.  We waited for her nurse to come and draw her labs and headed over to the school the minute she was done. Knowing how angry mom was I chose to stay in the car while she went in to talk to the superintendent. I almost felt like a kid again letting mom go and take care of any mess we got into. Fifteen minutes later mom walked out of the school with the hugest smile on her face I'd seen in quite a while. She said "there you go it's all taken care of" and just like when we were kids she became Noah's hero and mine all over again.  So we came home and I fell asleep with Ellie just to be woken up to mom cooking, something she hasn't done since Christmas, the oh so familiar smells filling the whole house, while joking and laughing with the kids and for a couple of hours for the first time, in a long time, I forgot she was sick and dying and realized really just how much I missed the good old days....

May 21,2014

Wednesday 

Flash Foward 10 months later...

It's amazing how the first day of school seems so long ago. I remember feeling devastated at the possibility my mom wouldn't be around to see my son on his

first day of kindergarten. 

Well here they are at Noah's graduation with their favorite teacher.

If even just for today I'm feeling like, Life is beautiful, sweet and full of unforeseen blessings.

 If anyone had told me a year ago this is where we'd be on this day, I may not have believed them, but it just goes to show Anything is Possible;-)

Ice cream and guilt

 

Connie:

Tonight I caught myself thinking about my family. I thought about where each one was and what they might be doing at 8:48 PM. I was eating ice cream...pistachio my favorite...my mom's favorite. I thought about my sister and how she loves butter pecan, but rarely eats it since her oldest daughter is allergic to tree nuts. How my brother who is not a huge ice cream fan liked strawberry growing up. How my father loved orange sherbert or peaches and cream and could eat them by the gallon before he was diagnosed with diabetes and became a health nut.  I wondered to myself what other random facts I had studied about them... I wonder what I'll remember about her after she's gone. What should I study or try to note now so someday when I have kids I can describe her to them. So I can paint her persona. My mom was stubborn. Strong. Outspoken. Loud. Arrogant. Confident. Beautiful. Indignant. Courageous. Selfless. Maddening at times and Watching her die of cancer has been slow and agonizing. Because everyday that persona is stripped little by little..and her personality becomes more of an echo and a little harder to remember.........

Cindy: 

At 8:48pm I was doing what I do every night, feeding E trying to get her to fall asleep, mom was eating a couple of waffles that Con so expertly toasted for her. And the minute you published this and my phone's dinged to let me know, I got so excited wondering what you had written. As I read your post I was right there with you, crying looking into our old house from the outside, like in a dream wondering how we got here.  Never in a million years would I have imagined that there would come a day that mom, who's always been so feisty and strong would become so timid and frail and that she would wither away and age 20 years overnight right before my eyes.  Last night she asked me to come down at about midnight, right away I thought she must be in pain to wake me in the middle of the night, so I grabbed her medicine on my way in.  She wasn't in pain though, she wanted to tell me no matter what happens or when it happens she's ok with it, that she loves the three of us more then we could ever imagine and she's so happy we'll always have each other to get us through the rough times then she kissed & hugged me and went back to sleep like she hadn't just woken me up in the middle of the night.

:-p

Gotta love her though!!!!

I can't paint you a picture of who mom was or what she was like when we were kids but I can show you...

She was 9 months pregnant with you in this one.

Now if I know you and trust me I do, stop crying, get something super fattening to eat and call me.... 

In the Beginning........

Cindy:

When our mom was first diagnosed with cancer people came from everywhere different states, different countries. There was lots of crying, hugging, crying, laughing, crying, smoking,crying,flowers and fruit baskets.

You probably get the point by now, my front door had become a revolving one and my home grand central station.  Being of Arabic decent my family tends to do three things religiously..

drink coffee, eat and smoke.  Being myself a non-smoker that was 7 months pregnant, rules were set in place pretty quickly..

All smoking had to be down outside even It was the middle of winter.  My sister and I took turns bringing out coffee, falafel and pastries.  My poor husband ran out to the store so many times it was almost funny. Almost. My children who are French Canadian & Palestinan but born and raised here spent half of their time asking me why these people were talking to them in another language and the rest of the time running away from the smells coming from my kitchen where my grandmother who hadn't seen my mom in over 15 years was cooking something my mom would definitely eat and would "put meat on her bones". My second cousin at some point asked me where the local gnc or vitamin store was only to return with some magical pills he had seen on an infomercial known to cure cancer that was after he told her she shouldn't do chemo because it was poison and would kill her faster.  On that note....Our week long "just came to say hello" became can't wait to see you go...

Needless to say we had everyone on their merry way by morning and we haven't seen them since.......
For the first couple of weeks after that we received phone calls and visits from all kinds of friends and family.
As time passed the phone stopped ringing as much and the visits became much less frequent.  
I'd like to be able to say that upset me but it really didn't.  We welcomed the peace and quiet and have spent the past few months writing letters,making videos 
and telling stories.