spoken on November 27, 2006 at St. Elizabeth Ann Seton Church...by Lisa
28 more days until Christmas
34 more days until it's 2007
What a year this has been for our family.
On April 26th mom went into the hospital...by the 28th we knew she had a brain tumor...on May 1st, surgery which was followed by 42 days of radiation and chemotherapy.
On Sept. 17th, Art went into the hospital and on October 22nd he passed away - Larry, Eileen and myself were at his side.
On Sept. 27th mom got the news that her cancer was back and she didn't have much time left.
My mom's favorite holiday was Christmas. Everything about Christmas this year will surely remind us of her.
28 more days until Christmas.
34 more days until it's 2007.
Growing up with my mom and dad I lived in a household of love. My parents laughed, played games with us, took Larry and I on adventures - camping vacations!...they yelled, cried, all the "normal" things families do. We ate dinner together every night. It seemed like when we first moved into Four Seasons our power went out a lot on Friday nights. That was our Euchure night...Larry and Mom against Dad and me.
Our camping adventures are too numerous to mention all of them, but they did take us to Yellowstone, Niagra Falls, Mt. Rushmore and Disney World.
Mom was Dad's everything - his love of his life.
Dad was Mom's Prince Charming. Their romance is what I always wanted to grow up and have someday.
My mom was the mom everyone could count on. Anything Larry and I did, she was one of the parents involved. Mom was the one who would host the Halloween parties for all the cousins. She was always thinking of others. I recall her working full-time yet still having projects to do for more than one organization. All my friends knew if they needed and ear, they could count on my mom. She would always listen. Mom wasan accomplice too. Once one of my boyfriends "gang" of friends took all the rakes and flags from the Four Seasons golf course and showed up at our front door. Security was after them! After making the guys put the rakes and flags back - which I am sure was just in one place - my mom drove the "get-away" truck with 8 to 10 guys in the back.
In the Fall of 1979 my parents sat Larry and I down at the kitchen table. My parents told me they were going to have a job for me the next summer. 'You know that baby you were always praying for us to have, Lisa?' they said. 'Well, we're going to have it next May.' I was 15 when they told me. Larry was 13. He asked when they "did it". Dad said, "we don't know exactly." And Larry said, "you mean you did it more than once?" In the end it was decided that Eileen must have been a band camp baby. That was the only time Larry and I were gone from the house.
In June of 1985 mom's world shattered. Life changed. It took a long time for mom to bounce back. Both Larry and I were in college and Eileen was only 5. I realized much later in my life how depressed my mom was.
When Art entered our lives he was not our dad. But he did offer us a special gift - he brought mom back to life. I did witness Art's love to my mom. He worshipped her...she was his everything.
I am so glad she was able to find love twice in her life. She deserved it. I know my dad would like Art. He wasn't the same as my dad, but he loved my mom with his whole heart, just like my dad.
I would like to end with a poem Eileen and I found about cancer, which I realize I have learned this year...
What Cancer Cannot Do ..............author unknown
Cancer is so limited.
It cannot
cripple LOVE
It cannot
shatter HOPE
It cannot
corrode FAITH
It cannot
destroy PEACE
It cannot
kill FREINDSHIP
It cannot
suppress MEMORIES
It cannot
silence COURAGE
It cannot
invade the SOUL
It cannot
steal eternal LIFE
It cannot
conquer the SPIRIT
Thursday, December 28, 2006
Tuesday, December 26, 2006
in honor of my mom, Patricia T. (Simonetto) Scubelek O'Connor
Patricia Terese Scubelek (Simonetto) O'Connor
PATRICIA TERESE SCUBELEK O'CONNOR (nee SIMONETTO) "Penny" Crown Point, Indiana Age 64, passed away at her home on Wednesday, November 22, 2006, after a courageous battle with brain cancer.
Born on Feb. 23, 1942, in Gary, IN, she moved with her family to Mansfield, Ohio, and Monroeville, Pennsylvania, and later returned to Lake County. After first attending Penn Hills High School and graduating from Gateway High School in Western Pennsylvania, she immediately enrolled in an airlines school in St. Paul, MN, with the aspiration of beginning a career as a flight attendant. Due to her youthful age of 18 years upon completing the course, Patricia initially began as a Teletype operator for Pan-American Airlines, based in San Francisco, CA. Despite making a home for herself in Burlingame, CA, she missed her family and eventually returned to the Gary area.
It was during her employment with Montgomery Ward Co. at the Village Shopping Center when she met her first husband, Anthony L. Scubelek. They were married March 3, 1962, and settled in the Miller section of Gary. Patricia decided to change careers, and accepted a position in the medical field in the office of her brother-in-law, Dr. John G. Gallinati. Upon relocating to Lakes of the Four Seasons in 1975, she held the position for 20 years as office manager for Dr. Jiorj Thephasdin of Merrillville. She retired in 2004 after working several years at the office of Dr. Keith Gingerich.
During her entire lifetime, she was actively involved in many organizations in support of her children's activities, including Girl Scout leader in Miller, Boone Grove P.T.O. member & band booster, 4-H leader and youth group leader at St. Elizabeth Ann Seton Church. In addition, she was active as a eucharistic minister at St. Elizabeth Ann Seton, the Lakes of Four Seasons Conservation Club, Volunteer Fire Department and Ladies Fire Auxiliary. In her leadership role, Patricia held many key offices in each of these organizations, including the organization of the Fire Auxiliary fashion show. For the past 25 years, she was responsible for organizing the LOFS telephone directory. From the early years, she was an important member of the LOFS Fire Department - as it was one the area's initial first emergency medical responders. She taught CPR to countless community members. Also, a member of the Indiana State Medical Assistants Association, of which she was honored as "Medical Assistant of the Year" in the late 1970s.
Patricia was an award-winning quilter, and member of Heritage Quilting Society. She was actively involved with her local Red Hat Society Chapter, and truly enjoyed the bi-monthly meetings and get-togethers. Her other favorite hobbies included ceramics, sewing, as well as flower gardening, caring for her cats, and spoiling her grandchildren.
Anthony Lawrence Scubelek, her husband of 23 years, preceded her in death in 1985; along with Arthur H. O'Connor, her second husband of 19 years; father, John Ambrose Simonetto, and sister, Carol Simonetto. Patricia is survived by her 3 children of her first marriage, Lisa (Chris) Kroll of Bloomington, Larry (Amy) Scubelek of Fishers, IN, and Eileen (Michael) Dimino of South Bend; 5 grandchildren, Stephen and Michelle Kroll, Nicholas and Jordan Scubelek, and Jacob Dimino; dearest mother, Teresa (nee Cassidy) Simonetto of Hebron; siblings, Joe (Tam) Simonetto of Munster, Pam (Bob) Pampe of Winchester, VA, Michael (Theresa) Simonetto of Roswell, GA, John (Charlene) Simonetto of Marysville, TN; also, survived by 3 nephews and 1 niece, Kemp and Jarrod Simonetto and Ryan and Erin Pampe.
Funeral Mass of Christian Burial will be held on Monday, November 27, 2006, at 10:00 a.m. Directly at St. Elizabeth Ann Seton Church, 509 W. Division Street, Valparaiso, with Rev. David Gosnell, officiating. She will lie in state from 9:30 a.m. till time of service. Interment, Graceland Cemetery. Arrangements were completed by Savich & Semplinski Funeral Directors. Visitation will be Sunday from 2 - 8 p.m. at Burns Funeral Home, 10101 Broadway, Crown Point. In lieu of flowers, memorials may be donated to L.O.F.S. Fire Department.
Published in the Post-Tribune from 11/25/2006 - 11/26/2006.
PATRICIA TERESE SCUBELEK O'CONNOR (nee SIMONETTO) "Penny" Crown Point, Indiana Age 64, passed away at her home on Wednesday, November 22, 2006, after a courageous battle with brain cancer.
Born on Feb. 23, 1942, in Gary, IN, she moved with her family to Mansfield, Ohio, and Monroeville, Pennsylvania, and later returned to Lake County. After first attending Penn Hills High School and graduating from Gateway High School in Western Pennsylvania, she immediately enrolled in an airlines school in St. Paul, MN, with the aspiration of beginning a career as a flight attendant. Due to her youthful age of 18 years upon completing the course, Patricia initially began as a Teletype operator for Pan-American Airlines, based in San Francisco, CA. Despite making a home for herself in Burlingame, CA, she missed her family and eventually returned to the Gary area.
It was during her employment with Montgomery Ward Co. at the Village Shopping Center when she met her first husband, Anthony L. Scubelek. They were married March 3, 1962, and settled in the Miller section of Gary. Patricia decided to change careers, and accepted a position in the medical field in the office of her brother-in-law, Dr. John G. Gallinati. Upon relocating to Lakes of the Four Seasons in 1975, she held the position for 20 years as office manager for Dr. Jiorj Thephasdin of Merrillville. She retired in 2004 after working several years at the office of Dr. Keith Gingerich.
During her entire lifetime, she was actively involved in many organizations in support of her children's activities, including Girl Scout leader in Miller, Boone Grove P.T.O. member & band booster, 4-H leader and youth group leader at St. Elizabeth Ann Seton Church. In addition, she was active as a eucharistic minister at St. Elizabeth Ann Seton, the Lakes of Four Seasons Conservation Club, Volunteer Fire Department and Ladies Fire Auxiliary. In her leadership role, Patricia held many key offices in each of these organizations, including the organization of the Fire Auxiliary fashion show. For the past 25 years, she was responsible for organizing the LOFS telephone directory. From the early years, she was an important member of the LOFS Fire Department - as it was one the area's initial first emergency medical responders. She taught CPR to countless community members. Also, a member of the Indiana State Medical Assistants Association, of which she was honored as "Medical Assistant of the Year" in the late 1970s.
Patricia was an award-winning quilter, and member of Heritage Quilting Society. She was actively involved with her local Red Hat Society Chapter, and truly enjoyed the bi-monthly meetings and get-togethers. Her other favorite hobbies included ceramics, sewing, as well as flower gardening, caring for her cats, and spoiling her grandchildren.
Anthony Lawrence Scubelek, her husband of 23 years, preceded her in death in 1985; along with Arthur H. O'Connor, her second husband of 19 years; father, John Ambrose Simonetto, and sister, Carol Simonetto. Patricia is survived by her 3 children of her first marriage, Lisa (Chris) Kroll of Bloomington, Larry (Amy) Scubelek of Fishers, IN, and Eileen (Michael) Dimino of South Bend; 5 grandchildren, Stephen and Michelle Kroll, Nicholas and Jordan Scubelek, and Jacob Dimino; dearest mother, Teresa (nee Cassidy) Simonetto of Hebron; siblings, Joe (Tam) Simonetto of Munster, Pam (Bob) Pampe of Winchester, VA, Michael (Theresa) Simonetto of Roswell, GA, John (Charlene) Simonetto of Marysville, TN; also, survived by 3 nephews and 1 niece, Kemp and Jarrod Simonetto and Ryan and Erin Pampe.
Funeral Mass of Christian Burial will be held on Monday, November 27, 2006, at 10:00 a.m. Directly at St. Elizabeth Ann Seton Church, 509 W. Division Street, Valparaiso, with Rev. David Gosnell, officiating. She will lie in state from 9:30 a.m. till time of service. Interment, Graceland Cemetery. Arrangements were completed by Savich & Semplinski Funeral Directors. Visitation will be Sunday from 2 - 8 p.m. at Burns Funeral Home, 10101 Broadway, Crown Point. In lieu of flowers, memorials may be donated to L.O.F.S. Fire Department.
Published in the Post-Tribune from 11/25/2006 - 11/26/2006.
Monday, December 18, 2006
Digging in the dirt...
Three children. That means it can be two against one. Who is the swing vote/decesion maker?
I think that role falls to me.
It will be time to stir things up and get my mom's house cleaned out. We will need to decide who gets what, etc. Money will become the focal point.
There are all ready problems with the third born, who lives the closest in proximity, being the only one who has a key to the house. She seems to feel she is more deserving of "stuff" than the other two. At least that is the second borns opinion. I tend to see his point. But I see her point too in that #2 in the past has been untrustworthy. Do I think he has changed? He does seem overly religious. Maybe he's paying for his past sins.
#1 - me - the pleaser
#2 - has always felt he's being cheated out of everything
#3 - the spoiled, late-in-life, baby: has never suffered - EVER, received everything she's ever wanted
How will this all play out?
Time will tell...
I think that role falls to me.
It will be time to stir things up and get my mom's house cleaned out. We will need to decide who gets what, etc. Money will become the focal point.
There are all ready problems with the third born, who lives the closest in proximity, being the only one who has a key to the house. She seems to feel she is more deserving of "stuff" than the other two. At least that is the second borns opinion. I tend to see his point. But I see her point too in that #2 in the past has been untrustworthy. Do I think he has changed? He does seem overly religious. Maybe he's paying for his past sins.
#1 - me - the pleaser
#2 - has always felt he's being cheated out of everything
#3 - the spoiled, late-in-life, baby: has never suffered - EVER, received everything she's ever wanted
How will this all play out?
Time will tell...
Friday, December 08, 2006
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?
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?
Wednesday, November 22, 2006
What Drives Me
In 2006, I lost my mother to Glioblastoma Multiforme, brain cancer, in just 7 months. During that time my step-father died of West Nile. I was with them both as they passed away. These two, close together experiences have touched my soul and changed the way I think about life. When my father died in 1985 I started saying "Life is too short" and in 2006 I started truly believing it.
Thursday, October 26, 2006
West Nile victim...Unbelievable...
Last Friday my sister received a phone call from the hospital Art was in...They wanted to put him back on a ventilator. My sister said no. She's just the messenger. On the Wednesday before that I was with my mom in the hospital (different hospital - for her) and we talked about how bad Art was. Carol was with us. Carol and I were talking and mom was withdrawn again. She heard us talking and wanted to know what we were talking about. We told her how bad Art was and asked her what she thought we should do for him. It was her wish to NOT have him surviving on machines. So, when my sister got the phone call...She was just the messenger.
By Friday evening Art was not doing very well. My sister (and a third cousin) were the only ones who could be with our Step-dad. By Saturday morning my brother arrived and then me that night. The plan was that on Friday all the meds, etc. Would be stopped for Art. He would be given morphine for his comfort. Once his breathing was down to a certain rate the O2 he was receiving would be stopped and he would be allowed to let his body give in to the disease.
Saturday was spent waiting for his breathing to get to that lower level. The nursing staff had a shift change at 7 pm. Our new nurse didn't like our decision and she had the attitude of "not on my shift". She did everything in her power to disobey our wishes. She gave our step-dad Tylenol for his fever when we stepped out of his room so he could be changed. She told us it was not right for us to "Let his brain fry." We asked her if she understood our whole situation. She said she did know about our mom. She tried to single out our sister, have her leave the room so she could privately talk to her, Eileen wouldn't go. She did not give our step-dad his morphine at the right times. He did seem to be suffering...Not our intent. She kept saying she wasn't clear on what the orders were and the topper was that in the middle of the night she called the doctor at home to have him clarify (1:30 in the morning). We weren't with her when she called the doctor, so we don't know what she said. She did come back and say the doctor said our step-dad should remain on the O2 through the night.
No sleep, frayed nerves and her attitude made us all feel between a rock and a hard place. We started counting down the hours until the shift change and hoping she wasn't doing a double shift.
Our nurse from the day before came back. She wasn't suppose to be with us, but after she checked on us, she decided to be with us. She wasn't in a good mood when she realized what had transpired. Did I mention, she has had four years of Hospice background? She was an angel.
On Sunday, we were back to waiting for Art's breathing to reach a lowered rate. By 2 in the afternoon we were at that point. He was allowed to breath on his own - without O2, that was the last artificial means still hooked up to him keeping him alive. (He was on a feeding tube, but that was not keeping him alive.) About three hours later Art peacefully passed. We were with him, holding his hands and talking to him. I am sorry our mom couldn't be with him, but I am glad we could be there for him and each other.
58 years old. West Nile. Not a good thing. He was unresponsive for five weeks. He had a fever of 104 (down to 101-ish with meds.) for five weeks. Trach, feeding tube, catheter, bowel bag. Swelling of his body - his hand and arms looked like they would burst for the retention of fluids.
We buried him yesterday.
Unbelievable. Last April I never would have believed you if you told me what we were going to go through this year. I would have laughed and said, "yeah, right". When mom was diagnosed with her brain cancer I would have thought we'd be heading to the cemetery for her, not Art next.
I am glad he is a peace and I wish no one else ever had to go through this. But, for those who do have to go through this, may they be blessed with an angel nurse like our Paula.
By Friday evening Art was not doing very well. My sister (and a third cousin) were the only ones who could be with our Step-dad. By Saturday morning my brother arrived and then me that night. The plan was that on Friday all the meds, etc. Would be stopped for Art. He would be given morphine for his comfort. Once his breathing was down to a certain rate the O2 he was receiving would be stopped and he would be allowed to let his body give in to the disease.
Saturday was spent waiting for his breathing to get to that lower level. The nursing staff had a shift change at 7 pm. Our new nurse didn't like our decision and she had the attitude of "not on my shift". She did everything in her power to disobey our wishes. She gave our step-dad Tylenol for his fever when we stepped out of his room so he could be changed. She told us it was not right for us to "Let his brain fry." We asked her if she understood our whole situation. She said she did know about our mom. She tried to single out our sister, have her leave the room so she could privately talk to her, Eileen wouldn't go. She did not give our step-dad his morphine at the right times. He did seem to be suffering...Not our intent. She kept saying she wasn't clear on what the orders were and the topper was that in the middle of the night she called the doctor at home to have him clarify (1:30 in the morning). We weren't with her when she called the doctor, so we don't know what she said. She did come back and say the doctor said our step-dad should remain on the O2 through the night.
No sleep, frayed nerves and her attitude made us all feel between a rock and a hard place. We started counting down the hours until the shift change and hoping she wasn't doing a double shift.
Our nurse from the day before came back. She wasn't suppose to be with us, but after she checked on us, she decided to be with us. She wasn't in a good mood when she realized what had transpired. Did I mention, she has had four years of Hospice background? She was an angel.
On Sunday, we were back to waiting for Art's breathing to reach a lowered rate. By 2 in the afternoon we were at that point. He was allowed to breath on his own - without O2, that was the last artificial means still hooked up to him keeping him alive. (He was on a feeding tube, but that was not keeping him alive.) About three hours later Art peacefully passed. We were with him, holding his hands and talking to him. I am sorry our mom couldn't be with him, but I am glad we could be there for him and each other.
58 years old. West Nile. Not a good thing. He was unresponsive for five weeks. He had a fever of 104 (down to 101-ish with meds.) for five weeks. Trach, feeding tube, catheter, bowel bag. Swelling of his body - his hand and arms looked like they would burst for the retention of fluids.
We buried him yesterday.
Unbelievable. Last April I never would have believed you if you told me what we were going to go through this year. I would have laughed and said, "yeah, right". When mom was diagnosed with her brain cancer I would have thought we'd be heading to the cemetery for her, not Art next.
I am glad he is a peace and I wish no one else ever had to go through this. But, for those who do have to go through this, may they be blessed with an angel nurse like our Paula.
Thursday, October 19, 2006
Dying sucks
I just got home last night from quick trip up north.
Mom is withdrawn. She won't engage in conversations. She won't look at me. She'll tell me she loves me when I say it first.
She's in the hospital right now and due to be released this morning.
She's so in her own thoughts it's very tough to be with her. I felt almost invisible.
I felt like I was trying to be there for mom and for grandma. At least grandma was genuinely happy to hug me.
I know this cancer and dying are the reasons for mom's behavior. It still sucks.
Mom is withdrawn. She won't engage in conversations. She won't look at me. She'll tell me she loves me when I say it first.
She's in the hospital right now and due to be released this morning.
She's so in her own thoughts it's very tough to be with her. I felt almost invisible.
I felt like I was trying to be there for mom and for grandma. At least grandma was genuinely happy to hug me.
I know this cancer and dying are the reasons for mom's behavior. It still sucks.
Tuesday, October 10, 2006
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.
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.
Tuesday, October 03, 2006
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.
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.
Thursday, September 14, 2006
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.
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.
Thursday, August 24, 2006
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.
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.
Thursday, July 27, 2006
Still waiting...
Mom had her MRI on Tuesday as planned. This is what I hate about being three hours away...she won't find out the results until next week - Tuesday I believe. How can they let her walk away from there and NOT tell her the results? Since she's had breast cancer, when she has a mammogram she can't leave there without knowing the results. Shouldn't this be the same thing? A tumor was growing in her head, she's had surgery, radiation and chemo to eliminate it, had an MRI, results should be available immediately. I don't get it! But, I do realize that my mom is of that generation who will do what the doctor says and not question it.
Or maybe not knowing is what my mom wants.
Mom was told: MRI on this date, meet with the doctor on this date. She didn't ask about finding out the results any sooner.
I really am trying to practice patience.
Different people respond differently!
Or maybe not knowing is what my mom wants.
Mom was told: MRI on this date, meet with the doctor on this date. She didn't ask about finding out the results any sooner.
I really am trying to practice patience.
Different people respond differently!
Tuesday, July 18, 2006
The clock still slowly counts each second...
Talked with my mom today. She had her head over a can, feeling ready to get sick once again. She has no energy. She's tired of being sick. She actually got away from Grandma's house on Sunday and didn't go to a radiation treatment or blood test. She rode as a passenger to my sister's, an hour away. She said she couldn't recall how to get from Grams to the toll road. I tried to reassure her that her brain has been through a lot.
She still has little control over her bladder and bowels.
This cancer sucks. Another week until mom's MRI. I feel so helpless. I can't even imagine what is going through my mom's head. Part of me doesn't even want to know how things are and the other part of me wants to know right now. Even knowing what change my ability to do something.
I feel so frustrated and sad. I am sure depression is mixed between my frustration and sadness. I keep trying to keep busy so I won't think about my mom's situation. Then guilt takes over. I mowed our grass this morning and I feel guilty because I could mow the grass.
Life is not fair. I wish it was next Tuesday.
She still has little control over her bladder and bowels.
This cancer sucks. Another week until mom's MRI. I feel so helpless. I can't even imagine what is going through my mom's head. Part of me doesn't even want to know how things are and the other part of me wants to know right now. Even knowing what change my ability to do something.
I feel so frustrated and sad. I am sure depression is mixed between my frustration and sadness. I keep trying to keep busy so I won't think about my mom's situation. Then guilt takes over. I mowed our grass this morning and I feel guilty because I could mow the grass.
Life is not fair. I wish it was next Tuesday.
Wednesday, July 12, 2006
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
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.
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.
Saturday, July 08, 2006
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.
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.
Wednesday, June 21, 2006
..."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.
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.
Tuesday, June 20, 2006
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.
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.
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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.
Wednesday, June 14, 2006
...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.
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.
Saturday, June 10, 2006
astrocytoma grade IV...aka GBM
Wow...what a weird 6 weeks it's been. On the evening of Wednesday, April 26th, my mother went to play cards with some friends. She got there and started acting like she was having a stroke. Her friends called 911, they thought she needed to go to the hospital. At the ER the doctors ran a CT scan. They found a brain tumor. The next morning at 7 am I received that phone call. The tumor was small - an inch by inch size. Within a day, another CT scan and an MRI were done. A second tumor was found - it was probably the "parent" tumor. It was about the size of a tennis ball. Both tumors were located in her right frontal lobe. She was told about the tumors on Friday - very late.
My mom lives just over three hours away. My daughter had a huge ballet recital that Saturday. We had a ton of rehearsals during that week. On Saturday before the performance I spoke to my mom. She said she was thinking of having the tumors removed versus just biopsied. She asked what I would do. I told her my gut reaction would be to say GET THEM OUT! But I didn't know all the facts. She told me she wanted them out too. The doctor agreed and said he could operate on Monday morning.
On Sunday, my husband and I drove two cars up to the hospital. We all visited my mom. My husband and the kids went home before dinner - it was still a school night. I stayed up there at the hospital for a few days.
I need to share this computer now so I'll try to write more later.
My mom lives just over three hours away. My daughter had a huge ballet recital that Saturday. We had a ton of rehearsals during that week. On Saturday before the performance I spoke to my mom. She said she was thinking of having the tumors removed versus just biopsied. She asked what I would do. I told her my gut reaction would be to say GET THEM OUT! But I didn't know all the facts. She told me she wanted them out too. The doctor agreed and said he could operate on Monday morning.
On Sunday, my husband and I drove two cars up to the hospital. We all visited my mom. My husband and the kids went home before dinner - it was still a school night. I stayed up there at the hospital for a few days.
I need to share this computer now so I'll try to write more later.
Wednesday, March 08, 2006
release...
I have been writing in my paper journal. It feels so good to be able to see all that text. It's great to be able to hold it in my hands. It's so tangable.
A blog is fine, if you want others to see what you are writing. A journal is good for people to sneak into. With a blog I don't feel like I am keeping anything private. I want my family to know what my thoughts are, but a part of me would feel better catching them in my journal. How can I tell if they are checking this out? And although I know they more than likely aren't going to see my journal, I feel empowered writing in it!
I have surprised myself by how much I have written. I still have so much more to write. :)
A blog is fine, if you want others to see what you are writing. A journal is good for people to sneak into. With a blog I don't feel like I am keeping anything private. I want my family to know what my thoughts are, but a part of me would feel better catching them in my journal. How can I tell if they are checking this out? And although I know they more than likely aren't going to see my journal, I feel empowered writing in it!
I have surprised myself by how much I have written. I still have so much more to write. :)
Tuesday, February 28, 2006
Friday, February 24, 2006
Christian...who is?
So what's my brother's problem?
Our mom turned 64 yesterday. Earlier this past week I tried to set up weekend plans for us to travel to a mid-way city, where my brother happens to live so we can all celebrate together. He got mad at me for not asking him first and just inviting everyone. I guess he doesn't really want to participate, but if he doesn't he'll look like the "bad guy"...since it's only a thirty minute drive for him.
We do have a less than wonderful past history with our mother. She does love her baby most of all...everyone can see that. But, it is her birthday and I hope we can just enjoy the time together. The past is the past. Sometimes that's easier to say than to live by, but it's the truth.
Our dad died suddenly too long ago and his death really did emphasize that life is too short. My brother tends to speak his feelings...good or bad. He has a lot of negative thoughts that come out. I am a pleaser so I'll do what I can to make things good for everyone. Even if that means I get the raw end of a deal so someone else can be happy.
Enough of this....complaining gets you no where. Therapy is better.
Families!!!!! Yikes!
Our mom turned 64 yesterday. Earlier this past week I tried to set up weekend plans for us to travel to a mid-way city, where my brother happens to live so we can all celebrate together. He got mad at me for not asking him first and just inviting everyone. I guess he doesn't really want to participate, but if he doesn't he'll look like the "bad guy"...since it's only a thirty minute drive for him.
We do have a less than wonderful past history with our mother. She does love her baby most of all...everyone can see that. But, it is her birthday and I hope we can just enjoy the time together. The past is the past. Sometimes that's easier to say than to live by, but it's the truth.
Our dad died suddenly too long ago and his death really did emphasize that life is too short. My brother tends to speak his feelings...good or bad. He has a lot of negative thoughts that come out. I am a pleaser so I'll do what I can to make things good for everyone. Even if that means I get the raw end of a deal so someone else can be happy.
Enough of this....complaining gets you no where. Therapy is better.
Families!!!!! Yikes!
Friday, February 17, 2006
Saturday, February 04, 2006
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