Expectations....

From an early age, I heard...'when you finish high school, you will go to college'.  What was implied:  People who had an education were better than the people to whom I belonged.  I know my parents just wanted the best for me, but somehow they made me feel I wasn't enough as I was. As I read what I have written, I know they were really saying I could achieve so much more than they had.  A child's perspective can be skewed in the wrong way.  Sometimes children think they have more world experience than they really do.  Life is meant to take a long time.  We need time to work through all the challenges that come with the ride.  

Through our life, we play different roles.  We take our cues from those around us. I knew what was expected of me.  I grew up in a gated community.  My parents were blue collar workers.  I remember thinking, how are we allowed to live here?  We were not anyone important.  In fact, we were nobodies.  Rich people lived in gated communities.  I grew up feeling someone was going to find out I wasn't the same as everyone else.  I wasn't elite.  I didn't fit in with the members of this gated community.  True, my parents were hard working individuals as were many of the other parents.  But these people played golf.  They played tennis.  They swam. The evidence was in the golf course, tennis courts, swimming pool and the tags needed to do these activities.  I had these tags.  Yes, I played golf.  Yes, I played tennis.  Yes, I swam.  However, both my mom and dad had to work in order for us to live in the house we lived.  Money was tight.  The budget didn't have much wiggle room.  When I needed dental work, and I needed a lot, I felt incredibly guilty.  I felt I owed my hard working parents for all they sacrificed for me.  There were fights over money spending.  I don't recall there ever being a fight over money spent on my issues, but I was a sensitive kid.  I took things personally.  I'm a sensitive grown woman.  I still take things personally.  I knew growing up that rich people were popular. I was cute, and I was smart, but I was not popular. At school, time and again I'd watch boys go for the pretty girls.  No one really wants a cute girl and when you add smart to the mix, they definitely don't want you.  Cute and smart are not part of the popular group.  So, I spent my growing up years feeling like I was going to be found out.  Someone had let my family into this gated community and we really weren't supposed to be here. Rich people were the popular group and that wasn't me.  I didn't feel that was my family either.  I sighed an audible sigh when I was able to escape the social expectations of growing up, daughter of blue collar parents, carefully living to not be discovered in a gated community. I made it through high school and no one found out.  

I went away to college.  It was my way to repay my parents, and I was still looking for a way to not be found out.  I wasn't that rich girl some thought.  Maybe through my education I could prove that I was capable.  I could take care of my parents, or at least not be a burden to them.  I could take care of myself.  Relief filled my soul when I met people who didn't know where I came from.  I met boys from all over the state, country and world.   They seemed to like cute, smart girls.  Maybe they were just being boys away from home...no social norms to follow.  They didn't know they weren't supposed to be looking at some imposter, non-rich, not popular girl.  I was scared I still couldn't measure up. College was an interesting playground for me. I struck pay dirt when I was asked to marry a boy who had parents that were BOTH college graduates.  My M.R.S.  

Educated people were better than the people I belonged with, right?  This thought constantly went through my brain.  I know I felt I had finally been welcomed into the popular group of life.  Yes!  Success!!!  I made it to the elite group.  To the big kids table.  I was finally worthy to live in the gated community. Academia leads to aristocracy...right?   

It took me over 25 years to learn the lesson: just because someone appears smarter, doesn't make them so.  Nor does smart make one better than another.  See, my whole lifetime I've felt that even though I was smart, I really wasn't as smart as __blank__, some-undefined-one else.  You can randomly fill in the space for that someone, it just depended on the situation or the circumstance.  The truth I know today is that I am not like anyone else.  I am still cute and smart.  My smarts are not the same as yours, and that's a really good thing.  

I once thought there was a perfect family; my fairytale.  This family was educated, and I was allowed to join their "team".  I thought they could do no wrong.  It turns out their story wasn't what I thought.  From the outside, one can only see a fraction of whatever someone else allows to be seen.  That perfect family...turns out they were human.  They are just as dysfunctional as the rest of us.  Being educated just meant they learned their life lessons a different way.  It didn't mean they were better. 

Reflecting on my youth, I had grown up in the perfect family and I realized it much too late.  My own parents had hearts bigger than anyone I may ever know in my lifetime.  My parents may not have had degrees signed from an academic facility, but they were smarter, happier, more loving, more honest, more community minded, and more respected than anyone who has yet to cross my life path. Those are wonderfully big attributes to have and to live up too.  

My mom passed away 10 years ago today from Glioblastoma Multiforme.  I was blessed to be by her side for the seven months we knew about the cancer.  When roles reverse and you need to take care of your parents in the ways you did your infant children and beyond, a part of your soul awakens that you didn't even know existed.  You become a much stronger version of yourself.  Version 2.1.  You realize truths that may have always been around.  Previously acceptable ways no longer become acceptable.  Subconsciously you do change.  You realize that life truly is short.  You start living that thought:  Life. Is. Short.  That means that you start to speak up for what you want in the time you might have remaining on this wonderful Earth.  You realize unfinished dreams, and you reach for them.  You realize how precious the time you have left really is with those you love.  If you are lucky, the person you married as young twenty-somethings is also changing in these ways and your lives will align so you may share the rest of the journey.  Unfortunately for me, I had a different path of challenges yet to face.  In addition to today being the anniversary of my mom's passing, it also would have been my 30th wedding anniversary.  My divorce was official 17 months ago.  Bittersweet day.  Yet life moves forward.  

No regrets.  I do realize I am rich beyond my wildest dreams.  I am thankful to no longer be confined, nor limited. 

Love, my friends.  
Be thankful.  

~Lisa Kroll, definitely eating, praying and loving these days
Feeling thankful for my family and especially for how I was raised.  

Tonight's blogging music:  
The Lumineers, Cleopatra

"Things I knew when I was young.  Some were true and some were wrong."   - the Gun Song, The Lumineers, Cleopatra Album

dedicated to Patricia T. Scubelek-O'Conner
written on 11/19/16 and edited and published on 11/22/16

  

Old Music...Person B's Perspective: How Divorce Effects the Entire Family

There are some tasks that we just never take time to complete.  
Tasks that we think, some day I'll get to that.  

Christmas Night, 2015
I had my house all to myself.  

Divorce changes the holidays.  
I am no longer part of my in-laws celebrations.  Ties have been cut.  I am told that I will always be part of the family, but quite honestly, that's not true.  I have been set free.  If I am allowed to celebrate, it is at a separate time.  
Changes.  
New traditions? 
Possibly. 

My Christmas stocking no longer hangs on the fireplace at the house next door.  
No longer will I be asked to contribute to making food for the feast.  
Touches of me remain however.  Ornaments I made by hand are still put up on the tree.  Decorations I purchased sit around the room.  But physically, I am not there.  I sit next door.  Alone.  Contemplating my solitude.  
I am good.  And I AM mentally good.  

In a divorce the couple, whose marriage is ending, must process the changes.  Usually one of those two people (person A) is farther along in the process.  They are typically the person who files and hands the other person (person B) their dismal papers.  Consequently, person B may be at a disadvantage, they need to catch up with the emotions that spill out.  Maybe they were blindsided.  Maybe they assumed what was happening was just a normal part of a long time marriage, as children age and leave the nest. 

Regardless, the emotional playing field is not equal.   There are five stages of grief that, even in the death of a marriage, person B must go through.  Denial, Anger, Bargaining, Depression and Acceptance.  

Having experienced the great loss of holding my mom's hand as she took her last breath after her seven month battle with Glioblastoma Multiforme (GBM), stage four brain cancer, I am well aware of these stages.  These stages do not necessarily come and visit in a set order.  Nor do they visit just once and leave.  

I am hoping that I am nearing the stage of Acceptance.  My ex has certainly moved on.  I hear he's applied for a marriage license, just six months after our divorce, and he's buying a nice big house for his new "family".  I've also heard he has been telling others that he socked away money while we were married.  Hmm.  What a catch!  

The Anger Stage.  I have recently been visiting here again.  I'm not angry with what I am going through.  Quite the opposite.  In fact, I am grateful for the me that I have allowed to surface again.  I really like me.  I won't brag, but I have found there isn't anything I can't do when I put my mind to it.  I have also discovered the vast number of friends I have.  In the "olden days", I was told I called too many people my friend.  HAHAHAHA!!!!!  Never!  Oh, I still have moments when loneliness strikes.  Being alone is easy, being lonely, not so much.  No holding this girl down though.  I was reminded at Christmas with this Superwoman key chain gift.  

I am in the Anger stage for my children.  I feel my children are being discarded.  They no longer offer any thing person A can use, or benefit from.  They are adults.  No longer are they cute little children who turn to their parents for every little thing.  No longer do they laugh at all jokes.  No longer do they put their parents up on the pedestals that young children do.  They cannot be told 'go to bed', 'be home by...', 'No', 'because I said so", etc.  They are ready to move forward and be their own people, as they should.  They have opinions.  They question.  They have started to experience life.  

What I know... is that children, no matter how old, need to believe the best in their parents.  They want to be loved.  They want to know they can count on their parents/guardians/grandparents for unconditional love.

Divorce causes children to be forced to experience the stages of grief as well. I wish I could protect my children from this.  I have not been able to step aside in this process and ask them how they are doing.  I just haven't been able to be that strong.  I was broken myself.  Maybe now as I am feeling Acceptance upon me, I am able to see what my own two children have had to deal with.  I am so sorry for them.  Everything they believed about their childhood has been pulled out from under them. The foundation they once thought was so strong has been shattered.  All I can offer them is my love, my acceptance and my unconditional love.  

By the forward relationships they have with person A and person B, they get to continue to form their own opinions.  They get to discover truths on their own.  Life is made up of constant change.  How we handle that change defines us as individuals.  

Last night (Christmas night) I meant to blog.  Instead, I did one of those tasks I would someday get to...I listened to all the unnamed tracks on my iTunes list.  A simple little job, but one my precious time is never allowed to get to.  All tracks have been named!  My discovery?  I have a nice collection of Madonna's music.  

So tonight, I am one strong woman listening to another strong woman, knowing I helped create two strong children.  My children are the best parts of both of their parents.  Of course I'm positive they have 51% of their mom in them.  

~Lisa Scubelek-Kroll

blogging music tonight:  All Madonna...Vogue, Cherish, Crazy For You, Justify My Love, La Isla Bonita, Like a Prayer, Like a Virgin, Live to Tell, Material Girl, Open Your Heart, Papa Don't Preach, Express Yourself

May is National Brain Tumor Awareness Month

It was three years ago today when I found out that my mom had two brain tumors and needed to have immediate surgery.  

Tomorrow would have been my mom and Art's wedding anniversary.  It would have been 22 years for them.  I remember being with my mom three years ago as she woke up after surgery.  What a way to spend one's anniversary.  

I am not sad today.  No tears.  Last year, two Illinois State Representatives tried to have May proclaimed  as National Brain Tumor Awareness Month.  I bet with Senator Kennedy's situation soon more people will call attention to this disease.  In a few weeks the second annual Coach Hep Cancer Challenge will happen here in town.  I still have my red laces from last year.  I hope all who can will support Brain Cancer/Tumor Awareness.  If Brain Cancer touches your life it will change you mentally(no pun intended) and emotionally.  I meant as a bystander too.  Maybe that's a biased statement and any cancer/disease that touches someone changes them and their loved ones.  But I personally know that if BC enters your life it cannot be cured right now.  A lot of other disease seem to have more hope with them than BC.  A few months ago I ran across another cause site that sells Grey T-Shirts to support Brain Cancer Awareness.  I seriously thought about getting a shirt that says "I wear Grey for my Mom."  But I couldn't do it.   

I keep asking myself why?  Why couldn't I buy it?  The answer, I think, is because I am moving on.  I don't want to be doom and gloom.  I want to remember the good and not be dragged down by sadness.  Then that saying I use to say pops in my brain, "Life's too short!"  I will choose to suppose a cause, but to Enjoy Life!  

Challenges..."Don't Quit!" Attitudes

My gym shoes have a new look!

My red laces show my tie to cancer. This weekend, on Saturday, I will run/walk a 5K with my daughter. It is the first Coach Hep Indiana Cancer Challenge here in Bloomington. Here's the link: http://www.coachhepcancerchallenge.org/index.html

from the website: "IU Football Coach Terry Hoeppner faced every obstacle, even brain cancer, with a positive, "Don't Quit" attitude.

Help us as we apply Coach Hep's determined optimism to funding cancer research and treatment right here in Indiana. Sign up now for the first annual Coach Hep Indiana Cancer Challenge on Saturday, May 10 in Bloomington, Indiana.

You can run, walk or ride a bike. And when you register, you'll be helping to support the IU Simon Cancer Center and Olcott Center for Cancer Education.

If you can’t participate in a Challenge event, help out in another way. Donate online, volunteer or become a sponsor."
-----------------
Having personal experience with a loss due to brain cancer, I know how much - or really, how little - is known in this field. Helping fund cancer research is a small thing I can do to help make a difference.

I'll run/walk because my mom can't. Maybe my few dollars donated to research can find ways to help others beat GBM.

:)

Winning The Game...

Mom's last call:  Click on the link on left side of blog to hear. Deleted: Only on my phone now...

Once a month or so I get a reminder on my cell phone that I have an old message.  I can pretend that she is making the last call once again, and that I won.  

Truthfully, it wasn't much longer after this call before the brain cancer really set in and I was unsure if she remembered who I was.  It is so nice to actually hear her say she loves me.  Kind of weird, I know.  Validation.  It's what I needed from her.  

The tears flow freely now... I still miss her.  

FYI...

FYI, When your mom dies of brain cancer and then you get a headache, it ALWAYS makes you worry. It doesn't matter that the doctors said your chances of getting GBM are next to nil. A headache makes you worry. Doctors don't know everything.

Indiana's Coach Hep, another GBM loss?

So having all the knowledge I have of GBM and living in Bloomington, Indiana it wasn't a surprise to me that Coach Hep died this morning from a brain tumor. But information has been kept very private (rightly so), was it GBM? Only 18 months for his battle. He was 59.

I feel for his family. I am sure they were able to cherish their time together. I hope that with Coach Hep's battle maybe some more information about brain cancer was gleamed. There is a Proton Therapy clinic here in town, hopefully it was used and useful and can help others in the future.

I still have a lot of unanswered questions...what causes primary brain cancers? Can we prevent them? Am I at risk? Are my loved ones and friends at risk? Is it environmental or genetic? I have compassion too...it's hard to watch someone you love be unable to control what is happening to them. It's hard to know what to say and what to do to help them. What a demeaning disease brain cancer can be.

God bless you Coach Hep. We'll all say an extra prayer for your family.

A year of memories...

This past weekend started a year of vivid memories for me. On Sunday it was a year ago that my family and I drove north to visit my mom in the hospital the day before her surgery. I would end up staying there for two more days while my family came home.

I can't believe it's been a year. A year ago I was sitting with Art in the recovery/ICU waiting room. Today would have been my mom's 20th wedding anniversary to Art. It's so sad to know they are both gone. What a difference a year can make.

I am not really looking forward to Mother's Day since I was up north with my mom for that last year too. It was when she said, remembering that she use to work for a brain surgeron, "I knew people who got this disease and they weren't around 6 to 8 months later."

I am hating being alone right now. My mind reflects too much and it makes me scared, sad and lonely. I am trying to get things straight in my brain, work out my emotions...I need to talk, but no one needs to hear my thoughts nor wants to hear my ramblings. Thank goodness I can write here. I need some control.

Another loss...but another angel above...

I just found out today that a cyber aquaintance of mine who had GBM like my mom passed away on March 11th. I am so sad for his family.

I can imagine being in his wife's shoes - we are probably about the same age. Yet, I can't quite imagine being his wife. I know what this disease can do to people. How strong she must be to have witnessed and weathered Glioblastoma Multiforme. It steals from us who must go on, emotionally. It tires us out and makes us wish for things we know are inevitable. We don't want our wishes to happen, but we do, how torn this disease makes us. I wanted the end for my mom, but I wasn't ready even when that moment came. If it was my husband, I would be so lost. With my situation, I had my family to come back to. My heart is breaking for this wife I don't even really know. She's too young to have lost her partner.

I know what it's like to be a child and lose a parent to GBM. Quite frankly, it stinks. Did I tell her I loved her enough? Did I make her comfortable enough? Did she know it was me? Was there more I could have done?

And then there is the wonder...the doctor told me the chances of me getting this disease are practically nil, but what if? I am her flesh and blood. I have inherited lots of other things from both my parents. How can the doctor be sure? What if? What if? What if? It's too scary.

Life is too short. We do need to live each day to it's fullest. Being sad is part of the process of grieving - this I know. Those who have gone before us would want us to enjoy the time we have here.

Everyday I am trying to see God around me. Today I am seeing the change of seasons. New flowers are blooming and the sun is shining. I think I saw a smile in the little yellow crocus at my lawns edge. It's telling me to LiveStrong.

I need a bit more time to heal. I am working on it though. I hope my cyber aquaintences family will be able to smile again soon as they recall the fun and love they shared.

Paranormal Activity, Spirits visit us and What time is dinner in Heaven?

On November 10th, my mom suffered a very long seizure in relationship to her brain cancer. It started at about 4 pm and lasted until about 6pm. She was given valium to try to help relax her. Our hired helper, Follie, had instructions from Hospice. My sister showed up shortly after the seizure started, she was there with her father-in-law for the evening. He's from VA and wanted to visit with mom.

Mom wouldn't look at Bean and she wouldn't talk, or couldn't. Hard to tell. I was on the phone with Bean a lot of the time offering my opinions about things. Mom had told both of us that she wanted to stay at home, not go back to the hospital. We were hoping the valium would work that was in the "care kit" from hospice. If we ran out and she wasn't responding we'd have to send mom to the Hospice House for as bit so they could help manage this situation.

fortunately the at-home meds worked. Bean went home for the night and I made plans to come the next day.

I arrived Saturday, Nov. 11, late morning. Mom was still having lots of small seizures on her right side. I didn't realize what they were at first. It took a visit from the hospice nurse to enlighten me. She called them baby seizures. Mom had not eaten or drank anything since Friday morning. She couldn't swallow her pills. We needed to start giving her her anti-seizure meds via rectum. Not fun, glad we hired Follie so we could let her "do the dirty work".

Mom was fairly unresponsive on Sat. & Sun. I didn't even think she knew I was there. It was so hard to tell. I held her hand a lot, stroked her cheek and told her I loved her again and again. My Aunt Pam arrived from Virginia on Sunday early afternoon. Bean was able to come back on Sunday evening. Mom seemed to "wake up" once Eileen arrived. She started to try to talk a little. We all got very excited. We called all mom's brothers and put the phone to her ear so they could talk to her. Then we called our brother and had him talk to mom too. I had called him several hours earlier and asked him if he was sure he didn't want to be with us. He assured me he couldn't go through this again. He said he was fine staying away. When we called him to have him talk to mom I confessed to my Aunt and sister that I had all ready called Larry and asked if he didn't want to come. I also told them his answer. My Aunt got on the phone, told Larry she didn't think mom would make it through the night and he needed to get there. He arrived at 1am.

Shortly after he arrived the power went out at the house. It was out for two hours. That wasn't so bad except that mom was on a microfiber air mattress bed. It deflated quickly. We checked on her every 15 minutes. She slept through it all. Just before the power came back on we tried to go back to sleep. I was sleeping in the recliner by mom, AP was on the floor on cushions and Grams was on the couch. Larry was on a couch in another room and Bean was in the back bed, as was Follie - in her own room and bed. AP and I head someone talking just before the power came back on . I told her I thought it was Grams talking in her sleep and she was saying "I love you". The next day AP told me that's not what she heard. She heard, "I am the holy spirit."

Mom did make it through the night. She also made it through another 10 days. She went 12 days total without food or water. It was very hard to watch her waste away. My brother did not stay past Tuesday of that week. He could not handle it. My Aunt and I were there for the whole time. We needed to be there for Grandma. Bean was back and forth, she did have to work a bit.

During the next 10 days many unexplained things did happen. Mom told us on that first Sun, Nov. 12, that she saw my dad and Art but not Grandpa, her dad. She told us it wasn't time for her to go yet. We thought she left us on two or three occasions. She told us, Bean, Larry and me that we scared her all being together. Previously she had said that she knew Larry would only come visit her if she was dying. Bean and I blamed her fear on him! He deserved the blame, he couldn't mentally come and be with her like we could. We understood, but it still made us mad and sad. Bean and I were fine with Larry leaving. During the next days we tried rotating who was at home. We'd announce who was going out, who was staying, when "the coast was clear". We all knew mom was dying and felt she was waiting for something. Did certain people need to be there or away? We kept telling her we loved her and it was all right if she needed to go. We wanted her to be at peace. We told her she was a great mom, friend, daughter, etc. We told her we'd miss her, but we'd always have her in our hearts. We tried toasting mom, we told fun stories from her past and talked about what she had accomplished in her life. We did make funeral plans. We planned the church service, picked out flowers, worked on her obit and picked out her outfit. Morbid? Probably. Necessary? Absolutely. The "we" who toasted and laughed with mom were Bean, AP(mom's sister), Aunt Tammy(mom's sister-in-law) Grams, Follie, Carol (Dad's cousin), Colleen (Carol's daughter) and Angie (long time neighbor and friend). There was a lot of female bonding that happened. We laughed and cried together. We drank wine, mud slides and ate ice cream together. We all hugged on mom A LOT! In fact one of the hospice nurses told us that maybe we were being too encouraging to mom. She politely told us we stimulating mom too much. After day 10 we 'low-keyed' things more. The lights were turned lower and we were much more quiet. We tried not to touch mom when she was sleeping. Letting go is very hard for the living and the dying.

More paranormal things happened...

One night the TV turned on and off by itself. It was the night we were toasting mom. Grams turned to me and asked why I turned on the TV. I pointed out that the remote was about four feet away from me, and everyone else for that matter, and that I didn't turn on the TV. I did pick up the remote and turn towards the TV only to have it go off BY ITSELF! We all looked at each other and said, "Art is here!" It was creepy, but good at the same time. When I was sleeping I felt someone pull on my upper arm three times. It was like they were trying to get me up. No one was around me. All in the house were asleep. AP and I heard three voices whispering by mom one night...Not just one single voice. We were sleeping just 10 feet away! I could feel the hairs o my arms raising up a lot. It was actually a very comforting feeling. At my mom's house, which is just two miles from Grams, the TV in Art's former bedroom kept going on and off my itself when Bean and I would be over there. We'd just start talking out loud to Art. We'd keep telling him that he needed to come and get mom. We were going to be okay.

On Sunday morning, November 19th, mom woke up at about 10:30 and she seemed very alert and clear. She was counting, "50, 51, 52, 52, 52, 53, 54, 55, 55, 55, 56, 57. 57." I asked her 57 what? She looked at me and said, "57 people." She had only been barely answering our questions lately. She hadn't started any conversations in weeks. Just eight weeks ago or so I was at physical therapy with her and she couldn't count to 5. I asked her where the 57 people were and she said, "Here. 57 people are here." I asked her if they were people or angels? She looked puzzled and didn't answer me. I asked her if I would know them. She told me, "I don't think so." I asked her if my dad, her first husband was here? She looked around and smiled and said, "yes, he's here." I did get excited and said, "mom, I know dad!" I asked if Art was there and my Grandpa, her second husband and dad. Again she looked around and said yes. I told her that grandma would be pleased that Grandpa finally showed up. Truthfully, I was thinking he'd been down in hell, he was that sort of guy! I also asked mom if she was waiting for Grandma to go to heaven (emotionally this has all been really hard on Grams). Mom looked at me and said, "No, It's not her time." I asked her if it was her time and she said, "Almost". My cousin's wife was there and she said, "Aunt Penny, will you tell my mom and brother I said hi?" And my mom looked at her and said, "I will tell them at dinner."

On September 27th, my sister and her husband celebrated their third wedding anniversary apart. Bean was with mom when she got the sad news that her cancer was back.

On November 22nd, I was with my mom celebrating my own wedding anniversary. Twenty years. The night before I called my husband and I told him I really needed him and the kids to come north. After school on Wednesday he loaded up our 12 and 14 year old and they were on their way to see me. I had been away from them for two and a half weeks. I thought I was only going to be gone for one night.

My mom passed away with my sister and I holding her hand and telling her we loved her. We reassured her it was okay to go. We would never forget her. We kissed her cheeks and cried. Follie was with us too. Nearby were Grams, mom's sister Pam, brother Mike, his wife, Theresa, Bean's husband was there putting their son down for the night. My husband and children arrived just five minutes later. Perfect timing? I think so. On Tuesday, November 7th I had brought my kids north to spend the day with my mom. She had only been staying awake for 15 minutes at a time. When she knew my kids were there she stayed awake for over three hours. We had a great day and visit. On the way home my daughter thanked me for driving them up. I am glad my kids got a chance to see mom's bright eyes on that Tuesday. They could feel her love for them in her look.

It's been two an a half weeks since mom has been gone. I seem okay during the days. At night when I try to go to sleep I cry. I do miss her. I just can't believe that she and Art are both gone. He was only 58, and she 64.

Life is interesting how quickly it can change. I missed my dad a lot too. He's been gone for 21 years now. I feel that I did get to 'feel' his presence in the past month. I also know he and mom will see me again in heaven someday, a long time from now! I know mom is at peace and enjoying herself with dad and Art. Who could ask for anything more?

A "living" funeral...a celebration of life.

I went back up north on Friday, yet again. When I got there a nurse from Hospice was with mom. Someone from Hospice had been out earlier in the day to evaluate things. The nurse who came back was meeting with my sister and I to tell us what mom does and doesn't qualify for. Mom seems to be doing okay in her current situation. The health assistant we hired, Follie, can handle things right now. The hospice nurse asked mom if she wanted a catheter yet. Mom said no. She can't hold her urine at all, but I realize this is a dignity/last stage thing going on with mom. She asked me if my kids know she wears diapers. I told her yes, but we call them depends, not diapers. The Hospice nurse also was able to get mom more nausea meds. Mom now has a patch behind her ear - in addition to her pills she takes every 6 hours. The Hospice nurse asked if mom wanted a hospital bed - she said yes. On Saturday it arrived and we have mom set up in the living room. She's more involved with what is happening during the day. At least she can see what's going on and watch TV.

Mom can barely walk. In fact, standing is hard for her to do. She can't use her left foot/leg at all. When we get her to stand up it is so hard to get her to turn around so she can sit in the wheelchair. Mom signed forms for no CPR and to not be resuscitated, when those times come.

The Hospice nurse also gave us a booklet on what to expect during these next final months. Mom is definitely in withdraw. Friday night she wouldn't talk to Eileen and me nor would she look at us. Eileen kept pressing her for what she was thinking about and she wouldn't answer. I told them I thought I knew what she was thinking about. Mom looked at me with a sort of look that said, no you don't. I asked her if she wanted to hear my thoughts but told her they were brutally honest. She nodded yes. I told them I thought mom was scared to die and leave Eileen. Mom's tears confirmed this for me before she nodded yes once again. It was getting late. I was suppose to be the one staying with mom, but I could tell she really needed her baby. Eileen said she was going to head to mom's house to sleep for the night. I told my sister that what mom really needed was for her to cuddle with her. Again mom had tears and she held Eileen tight. As I was kicked out of the room my throat was dry and I couldn't swallow. Total rejection as a child. My relationship has never been like my sister's with my mom. Did it hurt? Hell yes. Do I realize the entire dynamics of the situation? Of course. It still hurts.

I had trouble falling asleep out on the couch. I woke up both times Follie woke up - I heard her door open as she went to take care of mom. I went back and helped anyway. It is after all still my mom.

On Saturday my sister had to leave by 5 am. At that time I was welcomed back into mom's bed. Her new bed arrived at about 9. After it was set up and made we were able to get mom into it. Now she can be more comfortable with her head up and down at the press of a button. She can look out the back windows at the leaves changing color and the squirrels playing in the trees. She can see the TV and control the remote! She can be near grandma who fiddles a lot with nothing in the kitchen.

At about noon Follie and I got mom into the bathtub - she sits on a chair in there - and she had a bath. What a task! I had to physically stand in the tub and hold her naked body as I helped her out of the tub when she was done. This might have been her last bath in the tub. She's just too hard to move around and she can't help us at all.

That afternoon my sister, her husband and young son arrived. My sister and I took mom and Follie up to see Art. What a mistake that was. He is much worse than I had imagined. Any doctor who tells my sister that he can pull out of this and be okay is out right lying to her. I think Art will permanently be this way, but that is just my opinion. What you see when you see him is a shell of an unresponsive person. He has had a fever again (off and on) of near 103. He has a trach, a feeding tube, a catheter and bowel bag. The room smells of feces. The nurse on duty said they did get him to open his eyes when they called his name and squeeze their hand just slightly, earlier in the day. In personthe nurse admitted that to rouse him you have to talk really, really loud right in his ear. The other day a nurse told me, "well, he does have some brain damage and some swelling, but he's just taking a few antibiotics and mostly meds. to control his seizures. " I thought the swelling was in his brain. He might have some there, but his hands are really swollen too. He has those pressure socks on his legs to keep his circulation working. As for the brain damage? No doctor has said anything about that yet. I am sure the nurse is correct.

Eileen was pissed because she hadn't heard from a doctor on Art in over a week. She asked the nurse to have a doctor call her on her cell. She got a call late Sunday afternoon, but she didn't say what the doctor said because we were with mom at the time. She gave me a look though. On Saturday she had said she was worried the doctors were going to tell her this is as good as it is going to get for Art. I told her I think that is what indeed they will say. Her look kind of confirmed that, but she still hasn't officially said anything. I think this has reached the point of "Too much" for my sister to deal with. She seems to be taking a few breaths right now to keep her head above water. Eileen commented to other family members that she is waiting to have a meeting with a social worker and a doctor to discuss Art's long term care and prognosis.

Another sad part of Saturday night was the fact that mom wouldn't look at Art. She wouldn't talk to him and only touched his hand once when we pushed her. It was horribly painfull to watch. Eileen commented that it may in fact be the last time they see each other and they couldn't even say a proper goodbye. Hopefully they were connecting somehow that we were unaware of.

Grandma's house has fleas. I had brought up some carpet spray and did the carpet once Grams went to bed Friday night. I was able to vacuum in the morning. Her bedding really needs to be washed. I know she is insulted that we all keep pestering her about how things are. I tried to play it off as the cat and living in the woods. Both things are true. Better house cleaning wouldn't hurt, but it's not the cause of this problem. I did treat her cat last weekend.

I spoke to Grandma last night. She said the Hospice nurse was out and checked on mom. She also told me the hospice nurse told her that once this cancer gets to mom's spine she will just stop breathing. And the nurse did tell Grams this is a very fast growing cancer. I know this may be the reality of things, but does Grandma really need all this information!!!!!!!!! Why can't she hear this information when we can be there to give her a hug!

Grandma was getting ready to take her trash down and I told her Follie could help her if she wanted. Grams was feeling argumentative and said, I don't think she'd do that. I reminded her Follie is there to help mom and do light housework. Grandma said she didn't want to be critical but...She doesn't think she, Follie, likes to do housework. I told grams that I would talk to Follie for her if she wanted and Grams went a little berserk. She started to panic that if I said anything to Follie she may not take good care of mom. I told Grams I was just worried about her too and she told me she's lived a long life and things are fine for her. Basically she's ready to go. Grams said mom should have a lot of years left and since she doesn't Grams doesn't want anything to interfere with Mom's care quality. Grandma asked me not to say anything to anyone about this - obviously I am not keeping that promise. I won't say anything to our uncles or aunt, but I did tell my sister about what seems to be happening.

On Saturday, when U.Joe was there, he asked me to go get gas for him for the mower for next week. I did not go get gas. The lazy bum can drive the 2 miles to the gas station himself. My time up north is meant to be spent sitting with my dying mom. I did hear Joe telling Grams about the "home" near him that he wants grandma to come and live in. He said he's going to be getting her a brochure and send his siblings one too. Personally I think he's putting too much pressure on Grams. What she needs is support for what she's going through right now, not plans for her future. I don't think he realizes that taking care of mom is Grandma's reason to live right now. Also, A.Tammy called Grams on Sunday - just before the celebration. She said to grams, "what party? We didn't know about it". I told grandma that she was feeding her a line that EVERYONE knew about it - no invitations were sent out, it was all by word of mouth and e-mail and that we had just talked to Joe on Saturday about it. UNBELIEVABLE!!!!!

A Celebration of Life on Sunday.
Why do you invite people to come see a person who is dying?

The answers are for closure, to spread love and hope. To be reminded of your blessings and what a blessing you are and have been. To smile a bit, to cry, to support. To take pictures.

Last week my sister and I decided we needed to have a party to celebrate mom. Eileen made a phone call to just the right person who reserved a hall - free of charge for us for a few hours and took care of getting refreshments provided too. Dad had been a volunteer fireman over 2o years ago when he died. Mom had been a member of the Ladies Fire auxiliary for as long as I can recall - at least the past 30 years. The current president of the auxiliary knows what is going on and was able to offer us the fire house and had the other ladies make the food. Blessing! Someone else put together a power point presentation honoring mom and all she has done for the firemen and the community. It was awesome. How do you thank others for the gifts of love they gave us that day?

I had brought paper, pens, markers, tissues and hand sanitizer up for us to use. We had people record their memories for us to read to mom over the next few weeks. Eileen got the place together - bringing memorabilia: quilts mom made and a ton of pictures.

I had the job of getting mom together. I put make-up on her and a wig. We got her into a nice outfit. Grams, Follie, Mom and I arrived fashionably late. Mom really didn't want to go especially as the event drew closer. I think she was scared she might throw up in front of everyone. But, Mom seemed to enjoy herself - especially the food. My husband asked me during the event if we needed to watch what she's eating. Mom is after all a diabetic too. The good news is, we don't. She can have whatever her heart desires. Mom truly looked beautiful. My children have seen her funky Mohawk-do and my daughter's, "Grandma you look beautiful!" was extremely sincere.

The celebration was to last for three hours. Mom only made it for about 1 1/2 hours. My husband took her back to grandma's while we all stayed to wrap things up. When we returned to grandma's an hour later mom was extremely tired and snoozing in her new bed. She woke a bit and we all told her we had to leave. I am very glad we did this for her and for us. She may not have been at the right "stage" in this process of dying for what we threw at her, but given what this cancer will do to her in the next few weeks or even days, it was right.

When I talked to her yesterday morning mom was still sounding very tired. I think that is just how things are now with this cancer. By the end of our three minute conversation she was asking me weird questions...Where did I sleep last night? I am not sure who she thought I was by then in our conversation.

I called her today on her cell and she didn't answer at first. She called me back and it took her a long time to say hello. I could hear the TV in the back ground. I think she was distracted by what was on the tube. It sounds like she's not sleeping through the night anymore, but she hasn't been for the last month of my visits. It also sounds like even with the new nausea meds she is still getting sick, more than ever actually. Is this what the cancer does?

I will not be going back up north this next weekend. I feel guilty that my life is continuing as normal. I missed a lot with my own children last weekend. I need a weekend here. I have decided that unless things up north change drastically, I will be heading up in two weeks. I wonder how quickly and much mom will change by then. This whole think really stinks.

Cancer sucks.

Unbelievable...The roller coaster keeps adding turns

Unbelievable. I don't even know what else to say.

On Sept 17th, my step dad, who is 58, suffered a stroke. Actually, several strokes we now know. He fell down a small flight of stairs and laid at the bottom for over 20 hours before he was found. When they get him into ICU they discover he not only has suffered several strokes, he also has an arotic aneurysm AND an infection in his brain, along with a 103-104 degree fever...He ends up having West Nile, could this be the infection and fever? The doctors don't know. He's been in ICU since then and on Friday, Sept 29th he was moved to a more private facility. He has been mom's main caregiver.

On Sept 27th, mom gets the news of her MRI results. It isn't good. The cancer is back. It has jumped to the other side of her brain and is growning backwards too. There is nothing more the doctors can do. She's been given 3-5 months to live.

On Sept 28th, mom has a seizure. She takes a trip to the ER, they up her seizure meds.

She's very scared of dying. She's worried she doesn't have faith in God.

Over the weekend we try to surround her with family. She's very nervous. Her body is having trouble, it doesn't do what she needs it to do these days. Walking is very tough. She wears Depends all the time. She's very tired. She doesn't know that Art doesn't know about her cancer being back.

On Sunday, Oct. 1, she develops a slight fever of 100. Her throat is sore.

On Monday, Oct. 2, She gets more anxiety med. She also goes to PT. The can't do PT, her left foot drags and doesn't work like it should. Her PT is a friend of hers and will start making house calls.

Tuesday, Art's fever is back. It's at 102.4. They have been giving him Tylenol and icing him down. I talk to mom and she's sounding tired. I told her I called to check on Art and she asks how he is. I don't tell her the latest. I just told her he's about the same.

This is real life. It feels so surreal.

87 year old Grandma seems the best of the lot. But she's really sad about her daughter dying. One minute she says she's not ready to let her go yet. The next minute she tells my mom they should go together.

Yikes.

This Sunday my sister and I have been quickly working on having a celebration party for our mom - a living funeral if you will. I wonder is mom will be mentally with it for that.

I am ready to get off this roller coaster and go back to my old life.

Brain Cancer Rollercoaster & Long Distance Frustrations

Being three hours away and only talking on the phone for several minutes a day can be very frustrating. I really think my mom is on her way down hill. I don't think my grandma sees it yet either. My step-dad doesn't mention much, except that mom seems to be having a long string of bad days. It seems like she had another accident just a few days ago on the couch. I didn't ask for details. Mom finished another round of chemo last Saturday. During it she told me during one of our phone conversations, "every time I talk to you I feel like I am going to throw up or I need to go to the bathroom." I said, "wow, I'll try not to take that personally." Then she pretty much hung up on me. The week before that she seemed to forget that my sister and I were related. We were having a conversation about a wedding that she actually attending two days before. The bride and groom were deaf. Mom was fixated on the fact that, in her opinion, it was sad for the bride's dad, since he probably had different thoughts when his little girl was born. Then she ends up being deaf. I commented that at least he got to be there. My sister is 16 years younger than me, but we have the same biological parents. My mom was with my sister and told her what I said. Then mom said to my sister, "I don't know if you know this or not, but Lisa's dad died before she got married." I could hear the shock in my sister's voice as she responded, "What about my dad?" I could tell my mom was trying to process things. I just tried to play it off.

Another day this past week as my mom and I were on the phone I could tell she didn't seemed focused on the conversation. I asked her what she was thinking about and she said, "Cheese." I guess she was craving it.

Several weeks ago the doctor ordered physical therapy for mom. The therapist has been coming to her house twice a week. When I called tonight she was there. Apparently mom was being difficult, according to my grandmother, and wasn't wanting to cooperate.

Last Friday my Aunt's father died. He had been diagnosed with a tumor behind his heart. It was inoperable and he was given about a year to live. I think he was diagnosed about two or three months ago. My mom, grandma and step-dad went to the funeral at church yesterday. I think it was emotionally too much for my mom. Why she went & why they took her are beyond me. I didn't know the funeral was yesterday. My mom said to me last night that she wished I was there. She said she could have used me for moral support. I think I will need to head north for a visit as soon as I can. I can't go this weekend, maybe I can go next weekend.

October 3rd should start the next round of chemo. I wonder how many more she'll do. She has her next MRI on the 27th. I think she meets with the doctors on either Oct. 1 or 3.

I know I have priorities here, my husband and children need me. It's so hard though to not be up north. I know though that even being up north it's hard too.

My mom mentioned last week that my grandmother wasn't sleeping with her oxygen on at night. I wonder if that's really true. At times I think I need to go see a counselor. I haven't been sleeping too well lately. I have been waking myself up sobbing several times each night for at least the last week. I can't even remember what I am dreaming about. I am hoping that writing here will somehow help.

Results and more waiting...

Mom had positive results. The radiation seems to be doing it's job. There was a spot the surgeon couldn't remove - just found that out after the results - but I guess the radiation shrunk that spot. That's good. There is another spot. It didn't change at all. Not bigger, not smaller. The doctors say they will watch that spot but they aren't terribly concerned.

My emotions are so mixed.

Mom did a second round of chemo. She's now on the 23 days off, five days on cycle. She'll have her next MRI on Sept. 27. I think her next 5 day round of chemo will be on Sept 4. I wonder how many months this will continue.

I got a chance to see mom last weekend. My husband went too. He thinks mom looks better than I think she looks. She does have better color. And she looked like she might have more energy. But, she's not really moving around. Grandma is making her walk up and down the hallway. I think it's about 5 minutes at the most of walking a day. All she does is complain about that. Mom says all she's like is a day to sleep and not have anyone bug her.

I can look into mom's eyes and tell she's not the same person. I realize she may have some dead cells up in the tumor site. I also realize that the radiation and the tumor may have caused some permanent damage. But her lack of desire to get up, get dressed, get out, get off the couch, get back to her own home...I am struggling with. I also found a website with updated information. It is really depressing. Here's the link, http://www.emedicine.com/Med/topic2692.htm

I suspect if mom doesn't get up and move really soon, if she doesn't feel the desire to go on she won't make it much past Thanksgiving.

I don't feel like I can tell anyone my thoughts. I think my husband feels I am obsessing on all this too much. Maybe mentally I am cracking. I think I need to get some counseling soon.

Facts on Astrocytoma Grade 4

Grade 4: Grade 4 astrocytomas, frequently referred to as glioblastomas or glioblastoma multiforme, are the most malignant variety of these tumors. They are made up of cells which infiltrate brain tissue with a region - in some cases, multiple regions - of solid tumor tissue within the zone of infiltrated brain tissue. Mitoses are frequently noted by the pathologist as the surgical specimen is examined. In addition, regions of necrosis (dead tissue) are also noted where the tumor has grown so fast that parts of it has outpaced its blood supply. These tumors induce the formation of new but abnormal blood vessels. The identification of these blood vessels are also important in establishing the diagnosis. The CT and MRI demonstrate a contrast enhancing mass with a hypodense center (corresponding to necrosis), surrounded by a zone of hypodensity on CT and prolonged T1 and T2 on MRI (corresponding to infiltrated parenchyma).

The Grade 4 astrocytoma has the worst prognosis of all: 17 weeks average (mean)survival after diagnosis without treatment; 30 weeks average survival with biopsy followed by radiation therapy; 37 weeks average survival following surgical removal of most of the tumor tissue component of the tumor and radiation therapy; and 51 weeks average survival following stereotactic volumetric resection of the tumor tissue component and radiation therapy.

The prognosis for any patient with a malignant astrocytoma (Grade 3 or 4) is also very dependent upon age (older people do not live as long as young patients) and performance status (patients who are neurologically normal and independent live longer than patients who have a neurological deficit). Chemotherapy has been shown to add several weeks to survival. Radiation implants(brachytherapy) have also been shown to increase survival but more than half of these patients require another operation to remove dead tissue resulting from the radiation.

information from: http://www.braintumorfoundation.org/Astrocytomas.asp



Glioblastoma multiforme -- grade 4 astrocytomas, also the most malignant. Glioblastoma multiforme usually spread quickly to other parts of the brain. For this reason, these are difficult to treat. It is not uncommon for these tumors to recur after the initial treatment, and further treatment may be needed.

Grading references how tumor cells look under the microscope. Grades 1 and 2 are low grade, Grade 3 is moderate and Grade 4 is high. Low grade means that the tumor cells resemble normal brain cells; they usually grow slowly and are not likely to spread. In high grade tumors, the cells look very abnormal, and are more likely to grow quickly and spread.

information from: http://www.mayoclinic.org/glioma/astrocytomas.html

another informative web site: http://www.cancerbackup.org.uk/Cancertype/Brain

Hope?...or denial...

So today I talked with my mom and she had a phone call last night from my uncle. It seems his Father-in-Law has an inoperable tumor behind his heart. He has been told he has less than a year to live. My mom said she's glad that's not her. She doesn't know what she'd do if the doctor told her she only had six months to a year to live. She said she's glad she's not in the same boat as Stanley (the FIL).

I am recalling just a two months ago when she said to me she remembers when she worked for a brain surgeon and she knew people who got this cancer (Astrocytoma grade 4, aka GBM) and they weren't around in 6-8 months. Just yesterday she told me her life is boring. She doesn't want to go through this again. Today she said she knows grade 4 isn't miniscule.

I am wondering now...is she in denial or does she have hope? Am I being pessimistic? I haven't voiced my thoughts to her, but I really am trying to focus on having quality time with her. I want to make sure she knows how much I love her and how much she has meant and means to me.

I am really worried about what July 25th will bring. Surely she will have the MRI results back quickly. What will happen if she doesn't get a clean bill of health? How will my 87 year old grandmother deal with bad news? She's definitely in denial since she started telling people that mom's tumor wasn't even in her brain...it was just between her skull and her brain.

Everyday I feel my blood pressure rising. I wish the 25th would just get here so we can get it over with. I can't seem to think about anything else.

Tick...tock...the clock moves very slow when a person is waiting for an answer.

Radiation done...Chemo break...

So yesterday my mom finished her radiation and chemo treatments. Now we wait until the 25th for her to have her MRI. On August first she will have five more chemo treatments. The chemo increases from 140mg to 300mg.

Mom's steroids will cut down on Monday. She will go from three pills a day to one. Then two weeks later that one pill will be cut in half for two more weeks. Maybe getting off the steroids will help her shaking stop and her head not feel so heavy. She's been told the steroids weaken her neck muscles.

Yesterday mom also fell. She got moving too fast forward and fell into a "push up" position. I haven't talked to her to see if she's okay. Art told me and he didn't say she got hurt. He did say he tried to catch her, but he was behind her. Poor thing.

My sister e-mailed a picture of mom when she had her hair buzzed a few weeks ago. If I can figure out how to link it to here I will. In the picture mom's forehead hadn't turned all dark brown and leathery yet. She also doesn't look as tired as she looked in person last week when I was with her.

Maybe later I will feel like writing about my visit.

..."good" news...

Mom called last night to tell me that she met with the oncologist yesterday. He did in fact tell her that she only has 10 more treatments left. She was very happy. I heard a little hope in her voice. Maybe it's just happiness knowing the "getting sick" stage may soon be over.

Mom also told me that the stray gray cat that was in Gram's backyard several weeks ago just walked through the backyard with five kittens in tow. Grams was having a fit. But, she was also trying to feed them - they are feral and none would come anywhere near her. Maybe Grams will listen to me about the Feral Cat Friends groups I suggested. I love cats, but a lack of wild cats isn't such a bad thing. Eighty-six year olds...very opinionated they are and set in their ways.

the waiting game...

Well, now we are playing the waiting game. After today mom will have only 10 more treatments. Then the moment of truth...CT scan.

Life feels like it's at a standstill right now. Things are going on around me, but I don't want to acknowledge them too much. Last night I was on my front porch watching the hummingbirds come to my feeder...if I were in my mom's shoes maybe this would be the last year I could watch hummers. I watched the bumblebees buzzing in and out of my spirea...could be the last time I note them. A lightning bug came up from the bushes as the sun was setting....it's all very sad and I am not ready to be sad again yet.

----
Last Sunday my sister was visiting mom. She told me she got into a fight with Art on Saturday night. He's limiting mom's nausea pills because they are expensive. She's suppose to take a pill every six hours as needed...he's only giving her 1/2 of a pill. I guess they cost $30.00 a piece.

I'm mad at Art right now because at the end of May when I was visiting he commented that he's so tired of sleeping with someone who keeps waking up and getting sick. I discovered about a month before that Mom and Art have seperate rooms at home. Since she's been taking Chemo he's been sleeping with her at Grams house. What a jerk. I wish I could think of a roundabout way to remind him of his wedding vows.

When I last visited mom, I took my kids up. Art was happy I was there. He said I could sleep with mom, he needed a break. I wish I felt more compassion for him and could understand his thoughts a bit more. I don't. I keep my thoughts to myself. It's probably better that way.

Time to call mom and rejoice that there are only 1o more treatments after today for her.

...more on the GBM...

I should have realized how bad things were when I found out the nurses said my mom could have WHOMEVER she wanted visit her for HOWEVER they wanted in her hospital room that Sunday. They said no one would be kicked out and even though we got a bit noisy (jovial) ,we all stayed.

Sunday evening after most guests and family had left I got out my cordless curling iron. I asked my mom if she wanted me to do her hair. Surgery was set for 7 am the next day. After hair curling, my Aunt wanted to say a rosary. I do not practice Catholicism anymore, but saying a prayer is saying a prayer.

At about 10pm my Aunt, Grandma and mom's husband went home. That left my sister and I with our mom. We tried to sleep by 11pm. At 3:30-ish the nurses started coming into the room. They really had my mom up by 5 to prep for surgery. Grams, AP and Art came back at about 5:30. By 6:30 we had mom's room cleaned out and we were walking with her to the surgery Pre-op room. Only two people were suppose to be in there. We all took turns, but in the end my sister, Art and I got to see the surgeon and ask any final questions.

They surgery took 6 hours.

When the surgeon met with us again he said, "well, she made it through surgery." I don't think I even thought there was a possibility she wouldn't make it.

We got to see mom shortly after that in the ICU. She was out of it of course, but alive. They made us go see her in twos, no one could go alone and we couldn't talk to her - just look.

By now my brother, real dad's cousin, her daughter and daghter-in-law had showed up. My real dad's cousin decided we shold all go out a get something to eat. Art and Grams decided to stay at the hospital.

That night everyone went home - except me. I decided to stay so incase mom came around she would have someone there. It would be my second night to sleep in my clothes in a chair. Art stayed with me until about 10:15. It's good that he did, my mom came around at about 9:30 and she asked for Art. She also asked for food! I got to see her and I told her I'd be right our in the wating room.

Mom didn't need me overnight. I did go in and check on her periodically but she was always resting. The next morning when I really got up I changed clothes in the restroom. I got to see mom while others were on their way. She again asked for food and her nurse on duty, Christine, who was a tough cookie (but I LOVED her!), said she had a surprise for mom. She brought her a diet gingerale and ice chips.

Shortly after that my sister and Aunt arrived. My aunt would be heading home to VA in a few hours. My sister had been at the hospital since Friday and she needed to get back and check on her business.

Art and Grams arrived just after lunch. I had been in with mom and helping her to eat her clear lunch food. She was SO hungry. She did eat kind of fast - considering she had surgery - and when Art and Grams went in to see her she had just gotten sick.

Mom stayed in ICU until Thursday night, late. Then they moved her to a regular room. She couldn't walk without falling over so they weren't going to let her go home. By the following Wednesday the doctor thought she was ready to get home.

That was just before Mother's Day. I went up on that Saturday to see her and spend the night. Mom is staying at Grandma's. Her own house is just a mile away but grandma's is a ranch style and mom's is a split level.

Grandma insisted that I sleep with my mother. I don't think I have slept with my mother since I was 12.

The living conditions up there are not the same as what I am use to. I think because I like things clean I am perceived as 'I thnk I am better than them'. It's hard to stomach a bathroom when mold is growing in it. Her own daughter, my visiting aunt, had started this conversation with my grandmother in the hospital about her getting someone to clean her house. She took great offense to this conversation. I try to keep inmind she is going to be 87 next month and her muscles aren't what they use to be. Her idea of clean is not the same as my idea of clean. Suggest a cleaning crew should come in and you are saying her house is filthy and she can't manage it. There is a fine line here. People should tread carefully. Her independence is everything to her.

Grams is suppose to be on Oxygen most of the time. She only wears it at night. Her Doctor said she only has to wear it during the day if she wants to - so she says. Although she does have a small tank for when she's out and about, which she will not wear.

My mom didn't have complete muscle control of her bladder while I was up there. She "dribbles" a bit. Getting to the bathroom in a timely manner is a challenge. I cleaned up a lot of accidents. On Saturday night my dad's cousin came over and took Grams to church. The priest had grandma bring mom a piece of host. It was in this little gold box that my daughter would have loved to have. I felt like an intruder for awhile.

On Sunday, my uncle came and took Grams to Chicago for the day. Now was my opportunity. I popped open the trunk of my car and got out my cleaning supplies. I spent the next four hours scrubbing all the bathrooms, scubbing the kitchen floor, and vaccuming. There is so much more that could be done. We were able to get my mom over to her own house for a bit. She hadn't been to her place in over two weeks. She was a bit homesick. While she was there, my sister had purchased flowers for mom's yard for Mother's Day and she and I planted them and did a little general yard work.

I asked mom what she wanted for dinner - it was Mother's Day and she would be starting her radiation and chemo on Tuesday. She wanted ribs. So I ordered dinner for us all. We took it back to Grams house to eat. I stayed until about 9 my time and then headed home. I got home just before midnight and was able to kiss my own children on Mother's Day.