Tuesday June 11, 2013
It's been just over 10 days since Mom had surgery to remove the nasty Grade 4 Glioblastoma (GBM) tumor that has invaded her brain.
I've tried to give her & Dad some space to get acclimated at home, and used to their new routine.
Here & there I get an update from Dad. Last week Thursday's update went like this (In Dad's words):
"Not doing too badly so far. It was hard leaving the house this morning. It seems like I have been gone from work for a month. I was about to leave the house when Mom was getting upset about the cat trying to move around on the bed and bumping into her head from time to time. She had a really bad headache this morning, so I gave her some Tylenol and helped her back into bed in hopes that she would get more rest.
We have spent the last few days trying to figure out a routine for meds, sleep, etc. I think we have it pretty close now. I gave [her best friend / caretaker] the rundown of the routine as we have it now, how the last few days have gone, what needs to be done, etc. Like I said, it felt wierd leaving the house.
At lunchtime I checked on things with Mom and her headache was gone and she had gotten some good rest. They were going to attempt to do a little walk this afternoon.
I have been keeping very good notes and records so that I don't have to rely on my memory when we go back to the doctor next Tuesday (the 11th)."
I got another update from Dad yesterday, followed up by a text message this afternoon. She is currently in the ER again; going to have to stay a couple of days. Here's that one (again, in Dad's words):
"Well, the weekend overall wasn't too bad. Your brother came over Friday evening and cut the grass for me and visited a while. It was a good visit and I am very grateful to him for doing that (one less thing I would have to try to squeeze in).
Neither of us got much sleep Saturday night - it was just one thing after another.
Saturday during the day, she and [best friend] managed to get her in the shower so that she could wash her hair and get cleaned up. We have a seat that fits in the tub that she can sit on while bathing to make it easier.
Sunday we got up and had our coffee together as "normal". She is up only for a couple of hours before she gets tired and needs a nap again. We did manage to get out of the house for a bit in the afternoon for a short walk. That exhausted her and not long after getting back she had to nap again. She slept until almost 8:00 pm and back to bed by 11:00 pm.
She says that everything she puts in her mouth lately tastes bitter, so finding food that settles well is becoming a bit of a challenge. She seems to be a bit weaker and says that her legs feel like they don't want to support her very well so I, (or someone) has to help her get around the house as she is pretty unsteady on her feet.
Some of the short term memory that appeared to come back after surgery seems to be losing ground again as she was being repetitive with me quite a bit. I ended up having to cut her french toast for her as she had a tough time getting it done herself.
I'm not reading too much into this as it may be normal for things to appear to make big improvements in the "right after" surgery and then seem to settle back to "pre-surgery" issues for a time. We have no baseline to measure any of this as far as what to expect, what is normal or otherwise. We have to be back to see her surgeon tomorrow, so I will address these things with her doctor.
Tomorrow will be a long day and I'm sure it'll wipe her out (and probably myself as well), but some answers would be good to have... One day at a time."
I got a text message just a bit ago from Dad. This is all I know, so I apologize for the clifhanger, but AS SOON AS I know more, I'll update.
"We are at the hospital right now in ER. They did a CT scan and found swelling. Back on steroids and will be admitted for a day or two to make sure things start coming back."
I didn't prod for more information - I'm sure he's utterly exhausted. He'll get back to me when he gets a down minute, or when mom rests.
Life as we knew it is over. This is now our life, dad's life, Mom's life... until it changes again. Each new day is a brand new puzzle needing to be put together piece by piece, only to start again the next day.
Please continue to pray! Pray for Mom, the doctors caring for her, pray for my dad, for rest, knowledge and peace.
If you didn't catch this link in my last post, this is the link for the fundraiser. As well as another place I post (shorter) updates, pictures of Mom, etc. Mom's Fundraiser
Check here for updates, to donate, to leave a message of hope for Dianne or Dad, anything. It's a great website! And please - share, share, share! Let's get the word out about this nasty disease and come together as family and community to help Mom through this fight!
Showing posts with label Neurosurgeon. Show all posts
Showing posts with label Neurosurgeon. Show all posts
Tuesday, June 11, 2013
Friday, May 3, 2013
Hope Renewed
Thursday May 2, 2013
I got a rare early morning phone call today. Mom called "just to hear my sweet voice". It was 7:20 am. Of course I answered the phone thinking something was wrong.
But nothing was wrong.
She was sitting outside, playing frisbee with their dog, watching the sun come up, and thinking... Just thinking.
She didn't want to miss the moment to tell me how much she loves me. And she wanted to tell me how proud of me she is for coming as far as I have recently.
The call got emotional at one point, but I tried to divert. I knew she had an important appointment this morning with a potential Neurosurgeon that would handle her case. I wanted to keep her spirits up.
She and Dad went to Southfield, MI today to meet with a Neurosurgeon, Dr. Ryan Barrett.
They. Love. Him.
A-typical of Neurosurgeons, he had a great bedisde manner, he was comforting, supportive, positive and patient. I say a-typical because Neurosurgeons are brainiacs. Perfectionists. Egotistical. Dry. Unemotional.
Not this guy.
Her surgery is scheduled for Friday May 24th in Novi, MI at Providence Park Hospital. She will spend 2-3 days there post-op. They were told there is little pain with this surgery post-op as well. They will shave her hair just in the spot of the incision. He will remove a piece of the skull, and remove what he can of the tumor.
They got some answers today FINALLY!
They were told for sure it is cancer. We still don't know what type of cancer. This "thing" now has a name... Something, something, something Blastoma. You might laugh, but I am getting this information from my dad, who is riding this roller coaster blindly. I'm sure that the overwhelming amount of information they received was incredible. The only word he remembered was Blastoma.
The cancer does not appear to have metastasised. It appears to be primary. I learned what this means just today. To be primary means (I think) that this "tumor" is singular. This is the one source of cancer in her body. There isn't another "primary" cell or tumor that has grown to this spot. The surgeon did agree that this tumor has been there for some time.
Before he can tell the stage of cancer, or the type, he has to get into her brain. He needs to biopsy. There's obviously only one way to biopsy a tumor in the brain (at least in this case)... and that's the surgery.
Dr. Barrett showed them the crucial parts of the brain that you don't want a tumor (as if you could choose), and where her tumor is is not there. He explained that it is in a place that is fairly easy to get to. Although hers is not in the "crucial" part of the brain, it is still inside her brain, not on it. So the surgery will be tricky.
They feel they can remove "most of it". Chemo and radiation are a sure thing after the surgery and that can be done by Oncology in Grand Rapids.
They were told that the outlook "looks good".
The deficits after the surgery are unknown. She may be left with the deficits she has now - forgetfulness, loss of balance, disorientation, and some lack of eyesight / focus. She may be left worse off. It is unsure and too soon to tell. So many things are unknown at this point. But in the spirit of "one step at a time", at least now we have a surgeon that we trust, and is seemingly optimistic.
I received a message today from Di's best friend of 40-some years. She lives on the East side of the state, and met with them before the appointment. The night before the appointment, a story aired on their local news about this particular surgeon. Read the story here: http://www.wxyz.com/dpp/news/cancer-treatment-saves-local-womans-life
It is the story of a woman who was treated by Dr. Barrett and "he saved her life". She is "doing great and full of life again". Mom's friend saw this as a sign. And our hope is renewed every time we see these signs!
I was speaking with my dad this evening, and he expressed how amazing the outpouring of love and support has been. They are humbled by the phone calls, texts, emails, Facebook messages, cards... you name it! He was almost in tears as he expressed his gratitude for everything. So, thank you. As a team, as a family and as a community, we will carry them through this.
They were given the option to have the surgery as soon as next week. Mom said heck no! On May 11, they will be celebrating 23 years of marriage! Mom wants to wait the three weeks to give her some time to live and enjoy her family and friends. And they were told it's not an emergency. Obviously the sooner the better that we get that disease out of her, but a few weeks won't make much of a difference.
I will update with more information as it comes, but until her surgery I feel there won't be much more medical information to update. But I will write about how she is doing, her demeanor, and how she's getting along. Thank you for reading, and thank you for all of the support! Keep it coming - it's still going to be a long road!
I got a rare early morning phone call today. Mom called "just to hear my sweet voice". It was 7:20 am. Of course I answered the phone thinking something was wrong.
But nothing was wrong.
She was sitting outside, playing frisbee with their dog, watching the sun come up, and thinking... Just thinking.
She didn't want to miss the moment to tell me how much she loves me. And she wanted to tell me how proud of me she is for coming as far as I have recently.
The call got emotional at one point, but I tried to divert. I knew she had an important appointment this morning with a potential Neurosurgeon that would handle her case. I wanted to keep her spirits up.
She and Dad went to Southfield, MI today to meet with a Neurosurgeon, Dr. Ryan Barrett.
They. Love. Him.
A-typical of Neurosurgeons, he had a great bedisde manner, he was comforting, supportive, positive and patient. I say a-typical because Neurosurgeons are brainiacs. Perfectionists. Egotistical. Dry. Unemotional.
Not this guy.
Her surgery is scheduled for Friday May 24th in Novi, MI at Providence Park Hospital. She will spend 2-3 days there post-op. They were told there is little pain with this surgery post-op as well. They will shave her hair just in the spot of the incision. He will remove a piece of the skull, and remove what he can of the tumor.
They got some answers today FINALLY!
They were told for sure it is cancer. We still don't know what type of cancer. This "thing" now has a name... Something, something, something Blastoma. You might laugh, but I am getting this information from my dad, who is riding this roller coaster blindly. I'm sure that the overwhelming amount of information they received was incredible. The only word he remembered was Blastoma.
The cancer does not appear to have metastasised. It appears to be primary. I learned what this means just today. To be primary means (I think) that this "tumor" is singular. This is the one source of cancer in her body. There isn't another "primary" cell or tumor that has grown to this spot. The surgeon did agree that this tumor has been there for some time.
Before he can tell the stage of cancer, or the type, he has to get into her brain. He needs to biopsy. There's obviously only one way to biopsy a tumor in the brain (at least in this case)... and that's the surgery.
Dr. Barrett showed them the crucial parts of the brain that you don't want a tumor (as if you could choose), and where her tumor is is not there. He explained that it is in a place that is fairly easy to get to. Although hers is not in the "crucial" part of the brain, it is still inside her brain, not on it. So the surgery will be tricky.
They feel they can remove "most of it". Chemo and radiation are a sure thing after the surgery and that can be done by Oncology in Grand Rapids.
They were told that the outlook "looks good".
The deficits after the surgery are unknown. She may be left with the deficits she has now - forgetfulness, loss of balance, disorientation, and some lack of eyesight / focus. She may be left worse off. It is unsure and too soon to tell. So many things are unknown at this point. But in the spirit of "one step at a time", at least now we have a surgeon that we trust, and is seemingly optimistic.
I received a message today from Di's best friend of 40-some years. She lives on the East side of the state, and met with them before the appointment. The night before the appointment, a story aired on their local news about this particular surgeon. Read the story here: http://www.wxyz.com/dpp/news/cancer-treatment-saves-local-womans-life
It is the story of a woman who was treated by Dr. Barrett and "he saved her life". She is "doing great and full of life again". Mom's friend saw this as a sign. And our hope is renewed every time we see these signs!
I was speaking with my dad this evening, and he expressed how amazing the outpouring of love and support has been. They are humbled by the phone calls, texts, emails, Facebook messages, cards... you name it! He was almost in tears as he expressed his gratitude for everything. So, thank you. As a team, as a family and as a community, we will carry them through this.
They were given the option to have the surgery as soon as next week. Mom said heck no! On May 11, they will be celebrating 23 years of marriage! Mom wants to wait the three weeks to give her some time to live and enjoy her family and friends. And they were told it's not an emergency. Obviously the sooner the better that we get that disease out of her, but a few weeks won't make much of a difference.
I will update with more information as it comes, but until her surgery I feel there won't be much more medical information to update. But I will write about how she is doing, her demeanor, and how she's getting along. Thank you for reading, and thank you for all of the support! Keep it coming - it's still going to be a long road!
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