Journal from Monday
Today is hopefully mom's last day in the hospital. We are interviewing 3 different hospice agencies. Once we choose an agency she will be discharged from the hospital.
She can no longer stand up so we will have to an ambulance for transportation. It is unlikely that we will be able to leave the house once she gets home.
Her mood is much more stabilized and she seems to understand and be more accepting of the situation.
Monday, November 30, 2009
Sunday, November 29, 2009
Recovery from the hospice talk shock
Since the last posting mom had a couple of days obsessing over finding the counselor, fear of dying, either in a huge amount of pain or nearly sedated due to the amount of pain medications.
Her world changed around a bit on Saturday as she spent time shopping on the internet for Angee's wedding gifts. We also had Thanksgiving in the hospital. It was several hours of wonderful food, laughter, stories, card games and making fun of each other. There was so much magic in the air, it did not even feel like a hospital. I made Grandma's famous cornbread dressing which mom is quite possessive with and she gave me the stamp of approval. I will carry the torch on with pride. I was even proud of my family for going along with my cheesy question of, "what is everyone thankful for." Some of the responses included,"I am thankful: I don't have to do dishes, for our wonderful family, for being apart of the family, for spending time together, that Brook finally cooked the cornbread."
Her spirits were high but the fatigue got the best of her and she retired early in the evening. Our plan now is to wait until Monday to speak with a case manager that will help us order the equipment we need in the home and all of the other aspects of home health care. We are hoping to get her home on Tuesday.
*The picture of the food* I thought for fun I would include mom's lunch she ordered after she talked with the counselor. She said in an angry tone, "Well, if I am going to die I might as well eat whatever I want!" As pictured you can see fried catfish, fried onion rings, fried shrimp, mac and cheese, coke float, and ice cream with caramel sauce."
Thursday, November 26, 2009
Hospice talk...the right way
Mom's trusted primary neuro-oncologist physician came to the room at 5:30pm on Thanksgiving Eve. He had a day full of meetings with patients and wanted to spend quality time with mom before he went home to his family. Dr. Pudavalli floored me as he spoke with such ease, clarity, eloquence and compassion. Over nearly an hour and half he gently explained to mom that the only "treatment" they can offer at this point is to treat the symptoms. He admitted that we have run out of treatment options for the brain tumor. He discussed that in order to leave the hospital we need to discuss home health care options and he deftly worked the word hospice into the conversation.
The potential of getting out of the hospital - Mom is medically stable to be released from the hospital at this very moment. Dad and I, however, have reservation and fears about her coming home with no professional help lined up at home to care for mom. It is a tough decision that we must face. Mom wants to go home so bad, but since it is the Thanksgiving holidays nothing can be done until Monday in regards to setting up home health care. If we wait til Monday we have to endure the hospital for four more days through the holiday weekend. If we go home now, that will put a huge amount of pressure on Dad and I to take care of her at home. That is 24/7 intensive hands on care.
Physically - Mom is so weak at this point that it takes 2-3 people to help her transfer from the bed to the toilet seat. She is medically stable and can be released when she is ready and there is a plan of action for care at home.
Emotionally - She was just hit by a train square in the chest and is crying and screaming her way out of it. Since the highly unprofessional counselor came into the room and spoke the dreaded word of hospice out of context and out of order mom has cycled through crying spells and repeating herself, "I don't want to die. I could punch that woman. She took away all of my happiness. I have nothing to live for. Everyone is giving up on me."
Mentally - I think this is the first time since June 24th when she was diagnosed that she truly understands the severity of her diagnosis. For many of the past months she blindly trudged forward not fully comprehending that a grade IV inoperable glioblastoma malforme tumor is kind to no one. Perhaps this was her coping mechanism and perhaps that is how she has stayed so strong up until now. We do know for sure that she now understands that this disease will take her life.
I hear 20 times a day from all of our loved friends and family, "Brook, if there is anything I can do to help please let me know." I ask you all now to put on your big girl panties, pick up the phone, send an email, come visit mom and just spend time with her. Continue giving her what brings her the most joy, your love and friendship. She doesn't want food or flowers, she just wants to enjoy spending time with the people that she loves. I know it is scary, uncomfortable and sad to be around someone who is facing the last months of her life, but try to find the strength in you (just as so many of you have already) to spend time with her and call her as much as you can squeeze into your schedule.
It is 2:30am and mom is restless, but I just have to repeat one funny thing mom just said. Since this evil nameless counselor came into her room at 11:00am on Thanksgiving Eve mom has been obsessed with trying to find out who this woman is, getting her in the room, getting her boss in the room and chewing them out. She has asked everyone that comes into the room (even the nurses' aid) to find this woman's identity. She just pushed the call button and when the nurse's aid came in, mom said, "I need a police officer." I just had to laugh - at some point there is nothing else to do. Mom wants a police officer to come to her room at 2:30am on Thanksgiving to put together an investigation to find out who this woman is.
The potential of getting out of the hospital - Mom is medically stable to be released from the hospital at this very moment. Dad and I, however, have reservation and fears about her coming home with no professional help lined up at home to care for mom. It is a tough decision that we must face. Mom wants to go home so bad, but since it is the Thanksgiving holidays nothing can be done until Monday in regards to setting up home health care. If we wait til Monday we have to endure the hospital for four more days through the holiday weekend. If we go home now, that will put a huge amount of pressure on Dad and I to take care of her at home. That is 24/7 intensive hands on care.
Physically - Mom is so weak at this point that it takes 2-3 people to help her transfer from the bed to the toilet seat. She is medically stable and can be released when she is ready and there is a plan of action for care at home.
Emotionally - She was just hit by a train square in the chest and is crying and screaming her way out of it. Since the highly unprofessional counselor came into the room and spoke the dreaded word of hospice out of context and out of order mom has cycled through crying spells and repeating herself, "I don't want to die. I could punch that woman. She took away all of my happiness. I have nothing to live for. Everyone is giving up on me."
Mentally - I think this is the first time since June 24th when she was diagnosed that she truly understands the severity of her diagnosis. For many of the past months she blindly trudged forward not fully comprehending that a grade IV inoperable glioblastoma malforme tumor is kind to no one. Perhaps this was her coping mechanism and perhaps that is how she has stayed so strong up until now. We do know for sure that she now understands that this disease will take her life.
I hear 20 times a day from all of our loved friends and family, "Brook, if there is anything I can do to help please let me know." I ask you all now to put on your big girl panties, pick up the phone, send an email, come visit mom and just spend time with her. Continue giving her what brings her the most joy, your love and friendship. She doesn't want food or flowers, she just wants to enjoy spending time with the people that she loves. I know it is scary, uncomfortable and sad to be around someone who is facing the last months of her life, but try to find the strength in you (just as so many of you have already) to spend time with her and call her as much as you can squeeze into your schedule.
It is 2:30am and mom is restless, but I just have to repeat one funny thing mom just said. Since this evil nameless counselor came into her room at 11:00am on Thanksgiving Eve mom has been obsessed with trying to find out who this woman is, getting her in the room, getting her boss in the room and chewing them out. She has asked everyone that comes into the room (even the nurses' aid) to find this woman's identity. She just pushed the call button and when the nurse's aid came in, mom said, "I need a police officer." I just had to laugh - at some point there is nothing else to do. Mom wants a police officer to come to her room at 2:30am on Thanksgiving to put together an investigation to find out who this woman is.
Wednesday, November 25, 2009
The dreaded word of hospice
A rough go for Mom on Thanksgiving eve in the hospital. Mom is medically stable and she will be released when they figure out a near perfect cocktail of drugs to manage her pain at home.
After a sluggish morning mom picked up her spirits and alertness only to have them shattered by the most unprofessional counselor I have ever been exposed to. Mom, her brother and I were sitting in the room when a counselor walked in and asked to chat. She said, "So I understand you have been talked to about hospice." Immediately Mom started to scream and yelled, "Get the hell out of my room!"
We do not know which counselor she was, we don't know where she came from, but I can assure you that is not the way to approach such a topic. That is supposed to come from a medical doctor and in a much softer, more professional manner than just so bluntly. I then heard the most blood curdling scream come from my mother's mouth. She spent hours crying, demanding the head manager from where the counselor works, repeating herself saying, "I don't want to die. I don't want to miss the wedding. I want to see my grand kids." It was the hardest day she has faced since the day she was diagnosed...and the day is not even over.
Cute mom video
In all of the bad news recently I wanted to add this cute video I took of mom a couple of weeks ago.
http://www.youtube.com/watch?v=hRcfjxDkczM
http://www.youtube.com/watch?v=hRcfjxDkczM
Tuesday, November 24, 2009
Latest trip to the ER
When mom woke up complaining of abdominal pain on Monday morning I knew I had to take her to the ER. Since this was the third morning of stomach pains I knew the doctors would direct us to do so. She was also in an extreme amount of pain on the left side of her body and we needed stronger medication to bring her comfort. We arrived at 9:00am and the summary was as follows:
1. She needed whole blood and platelet transfusion
2. She needs antibiotics because the diverticulitis is still present
3. They found a blood clot in her lower abdomen
4. They discussed the possibilities of a drainage for the diverticulitis
5. They put her on a two day bowel rest which means no food or drinks for two days
Morale of the story - they have admitted her again to the hospital.
At the very moment at 12:30pm on Tuesday she is stable and sleeping soundly with a good dose of some very strong pain medication. They are not concerned about the blood clot or diverticulitis at this point.
Their attention is now on the nerve pain on the left side of the body which could be an indication of the tumor working its way through the brain.
We do not know how long she will be in the hospital, it is almost not worth making a guess at how long she is in the hospital because they have not given us a time frame at all. I am guessing that we will be here for the good part of the week which means through Thanksgiving. It is so unpredictable though, it could be two days it could be two weeks.
She is in room P811 if anyone is interested in visiting her. Feel free to call my cell phone - 970-333-4035 if you would like further updates.
1. She needed whole blood and platelet transfusion
2. She needs antibiotics because the diverticulitis is still present
3. They found a blood clot in her lower abdomen
4. They discussed the possibilities of a drainage for the diverticulitis
5. They put her on a two day bowel rest which means no food or drinks for two days
Morale of the story - they have admitted her again to the hospital.
At the very moment at 12:30pm on Tuesday she is stable and sleeping soundly with a good dose of some very strong pain medication. They are not concerned about the blood clot or diverticulitis at this point.
Their attention is now on the nerve pain on the left side of the body which could be an indication of the tumor working its way through the brain.
We do not know how long she will be in the hospital, it is almost not worth making a guess at how long she is in the hospital because they have not given us a time frame at all. I am guessing that we will be here for the good part of the week which means through Thanksgiving. It is so unpredictable though, it could be two days it could be two weeks.
She is in room P811 if anyone is interested in visiting her. Feel free to call my cell phone - 970-333-4035 if you would like further updates.
Ranch Weekend - Nov. 21st - 22nd
The family planned a surprise weekend for mom at Dad's company's ranch located two hours west of Houston. It was a very simple plan, leave on Friday return on Sunday and simply enjoy spending time with one another. Mom was very excited when she read the card that told her about the surprise (see the "youtube" video attached). While we did enjoy the comforts of the lovely ranch house, and it is a gorgeous ranch, it was tough to enjoy our time with mom because she was in so much pain. Nearly one month ago pain in her left side began and has been increasing to the point now where it is difficult to manage. She started having abdominal pains and we feared having to take her to the ER. We had good intentions and hopes for a great weekend, but it was simply a weekend at the ranch with a mom in pain and feeling fatigued.
Here is the you tube video: http://www.youtube.com/watch?v=ZexeM4hBK54
Thursday, November 12, 2009
Great news from the MRI
It is a miracle! We had such wonderful news from mom's neuro-oncologist. The results from the MRI showed us that her tumor has not grown in at least 8 weeks. Miraculously the "brightness" has even reduced (whatever that means). The tumor has not necessarily "shrunk" but since the swelling has gone down the images on the MRI were more accurate. This proves that the chemo and the radiation did the job it was intended to do!
Mom and I are currently at a 4 day quilt retreat in some random town in Texas. Besides the struggle of having to pack nearly half our possessions for this quilt retreat, mom is so happy to be with 15 of her friends and the opportunity to quilt all day for 4 days!
Mom is already planning every detail of Thanksgiving and delegating who is doing what which tells us one thing, "Vicki's back!"
The biggest challenge we have currently is getting mom to push herself in PT and OT as much as possible in order to maintain and hopefully gain more strength.
Monday, November 2, 2009
Milestone and Halloween
When I woke up this morning I was so excited to write nearly all good news on the blog concerning mom...until we went to her physical therapy appointment. I was putting her shoes on in the house and they nearly did not fit due to the extreme swelling in her feet. When we arrived to the PT clinic they checked her blood pressure and found a very high number. We called the doctor and they advised us to go to the ER. Shinikies! So off to MD Anderson we went again.
After spending nearly an entire day in the ER they concluded she only needed a platelet transfusion and then she could go home.
Milestone day: On October 28th the results from her blood work came in and for the first time since August she produced her own platelets!! We anticipated that a transfusion would be needed on that day but it was such exciting news that no transfusion was needed!
Mom has been busy with quilting and entertaining visiting friends. One of my BFF's (Hilary) came into town this last week and we had a lot of fun hanging out together. You will see a photo of Hilary and I dressed for a Halloween party. We also went to dinner one night to celebrate Tyler's birthday.
Mom's next scheduled MRI is November 10th so we will probably not have anymore medical updates until then. Two weeks ago she was sleeping 14-17 hours a day and now she is only sleeping about 10-12 hours a day. The headaches seem to have to have dissipated. For nearly two weeks neurological type pain has bothered her entire left side of her body and she was recently given medication to aid with this type of pain. Her general weakness in standing and walking is still very present, but she is still able to do the things she enjoys the most: quilting and spending time with friends and family.
Please remember when you communicate with mom she has trouble keeping dates and schedules straight so please confirm and check in with me if you want to make any plans with her. We are thankful to not see any long term memory affected, but her short term memory is showing signs of digression. As always, keep the phone calls coming in at anytime of the day or night and stop by anytime.
If you would like to see a video of mom quilting feel free to check out this video on youtube:
http://www.youtube.com/watch?v=-50T3bFFRX4
Just for fun I have also posted another video of mom filmed in August during her radiation treatment. This one is very funny!
http://www.youtube.com/watch?v=_Y98Dx0wx6Q
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