Friday June 14, 2013
Well this week has been exciting...
Not really. It's been rather difficult.
Dad took Mom to her post-op checkup in Novi on Tuesday. She had been regressing some in the days prior to the appointment, and he was looking forward to getting some answers about what was going on.
A CT scan at the appointment showed swelling on her brain. So much swelling that it had pushed her brain off-center a little. The left side had a hole where the tumor had been. Her brain swelled to fill that hole, and started putting pressure on the right side of her brain.
Post-surgery, she was taken off steroids cold turkey. Some patients can handle that, some need to be weaned. Apparently, Mom is one of the latter.
They promptly admitted her to the Neuro ICU. They immediately placed her back on steriods to try to gain control of the swelling.
Obviously, we weren't prepared for all of this! Dad hadn't packed any clothes or necessities for them to stay. He headed back home that evening to pack some things...
Over the course of the next few days, she began to get better - slowly. She saw Physical Therapists regularly. At this point, she cannot walk without a walker, her speech is ok, but just not what it used to be. Her eyesight has deteriorated - she cannot dial numbers on the phone, or text or type.
It was a waiting game to see if the swelling would begin to subside. And it did.
We had heard little from Dad while he was there with her. It was a whirlwind for him. Yesterday, I finally poked & prodded to get him to give me an update on her condition. Through tired eyes and exhausted fingers, he texted what he could, following up with a phone call.
Basically, this is what I learned:
She is now walking with the assistance of a walker. She needs continual rehab. Today, she is being transported to Mary Free Bed (the best) via ambulance for inpatient rehabilitation for an undetermined amount of time. We are told that chemo and radiation treatments won't start until swelling is down significantly, and rehab has improved her physical limitations.
Her symptoms should improve with time and rehabilitation.
Emotionally, she's on a roller coaster ride.
She is frustrated.
She is petrified.
I could hear the pure exhaustion in his voice. He sounded near defeat. Every now & again, I heard hope. He's still got it. He'll never lose it. One thing about my dad is he is a fighter. He never gives up. Never. And this is the most important, toughest fight he's ever had to endure. That's his best friend, his life companion, lying in a hospital bed. And he is helpless to take her pain away.
Behind her, he stands. Waiting to catch her, to carry her. And down the line, stands us - his family. Waiting to catch him. And even further stands our friends and loved ones, waiting to catch us. And so on... We will endure, we will stand firm with hope for one more day, tomorrow being better than today.
She will be in good hands the whole way. With the move to Mary Free Bed, she will be in the best place to get her well for this leg of the journey.
And she will be one step closer to home.
Friday, June 14, 2013
Tuesday, June 11, 2013
Life As We Knew It...
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!
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!
Monday, June 3, 2013
Nothing Short of a Miracle
Monday June 3, 2013
Well, she made it.
She made it through the diagnosis of her brain tumor.
She made it through a heart attack.
She made it through brain surgery to remove a poisonous tumor.
We learned on Friday that the tumor was removed. We were told that it was completely removed. The physician that told us this little tidbit was not the actual surgeon that performed the surgery. It was one of his colleagues.
Shortly after we received this news, the surgeon came in and elaborated.
Maybe we were all just high on the news that the tumor was gone. Maybe we were just so incredibly hopeful that this was over.
I know we weren't naive. I know we knew better.
But the news he delivered was crushing... and I think we all knew it was coming sooner or later.
Some preliminary tests had come back. Yes, the tumor was removed ("grossly", meaning most of it) - but the cancer was not. Her brain is still littered with cancer cells.
He said it. That word.
Cancer. It was true.
Grade 4 Glioblastoma.
You can find out more about what a Glioblastoma is on the American Brain Tumor Association's website. I set that link to take you right to the glioblasotma page.
It's gnarly. Nasty. And it looks really bad in black & white.
But we have to remember that every person is different. Every person fights differently. There are statistics, and there are miracles. In my opinion, Mom's story is already nothing short of a miracle.
Immediately following her surgery, it was so hard to look at her. She ate like a little bird. She could barely speak. She could barely open her eyes.
We were all waiting in such anticipation to see how she was. Did she know who we were? Did she remember what she was doing here?
By the late afternoon / evening the day of surgery, she was so exhausted and on regular doses of pain meds that all she did was sleep.
And we were still waiting to see.
The next day, she progressed more. Physical Therapists came to assist her with simple things. They asked her questions about how she felt, what was missing, what was difficult.
By the second day after surgery, she was carrying on full conversations. Reminiscing back 25-30 years.
But when the Therapist asked her what the date was, she couldn't answer. When asked what month it was, she couldn't answer. When asked what year it was, she immediately said 2013. Yay!
She could name every person that was in the room with no problem. She could feed herself with ease. However, reaching for things and picking them up was quite a task.
Mom described it as though you were standing in front of a mirror. There's a tube of chapstick on the counter and you reach for it, but you have to use the mirror to guide you. Naturally, you may tend to go to one side or another of the item. Or, you may think it's farther away than it really is. But you can ONLY use the mirror to find it. You cannot take your eyes away and see the item in its real position.
And she had no peripheral vision on her right side. You had to pretty much be directly in front of her for her to see you.
So, her vision is a little off.
She could not stand on both feet with her eyes closed. She would fall over.
She could not walk - anywhere - without assitance and holding onto the wall for guidance.
She could touch her nose, and then reach out and touch a hand in front of her with her eyes closed.
She could not do "flap jacks" with her hand. Take one hand and hold it out palm up. Take the other hand and flip flop it on top of the other - back & forth. She could not do that.
She could not complete certain sentences using proper English. She forgot which words went together to complete a sentence.
She had a hard time reading (her dinner menu, for example) and having a picture in her mind of what she was reading. Immediate memory was not clear.
At least on this day.
Today, day 3 post-op, those symptoms are already subsiding. She is talking on the phone, walking through the house mostly without assistance. She is reading better. Her sentences are more accurate and "normal". She has her incredible sense of humor back. She remembers things, stories, people.
My dad described it as something "amazing" to watch as she continues to get better hour after hour.
This is nothing short of a miracle.
We are celebrating small victories. And we will be doing this for a long time. I told my dad on Friday (surgery day) that that was the easy day. And that was a hard day. The rehabilitation, chemotherapy, radiation, side effects - and all of things that will occur that we can't even comprehend right now - they're coming.
There was a time recently that I was feeling incredibly overwhelmed - like I would never reach the shore. My dad asked me, "How do you eat an elephant"?
"One bite at a time".
Well we're going to liken this battle with cancer to eating an elephant (but just a little - obviously cancer is very real, and eating an elephant is just not).
Both seem humongous.
But taken one step at a time, one bite at a time, when you look back, you realize how far you've come. It isn't insurmountable.
I've recently also learned that the medical bills are piling up. They have insurance, and their yearly out of pocket deductible has already been met. Their portion of each bill after insurance is in the thousands of dollars. And it's only the beginning.
I set up a fundraiser for them to help ease the pain of medical bills on top of everything else. My dad still works a full time job. They have a full time friend and caretaker who comes to the house every day to help Dianne get around, cook, you name it. Dad is keeping all the appointments, paperwork, transcripts, physicians (neurology, oncology, cardiac, etc) - everything - straight.
If there was anything I could do to lighten that load I would. This is Dad's new life now. As a family, and as a community, this is when we're called to help one another. Here's a link to the fundraiser page: Dianne's Battle - A Fighter's Journey With Brain Cancer. You can go to that page to get updates, donate, comment or leave a message for Dad & Di. You can give anonymously or not, you can keep your donation amount private. Donations are received through PayPal, but you can give using PayPal, or any credit / debit card without using PayPal. Any gift you can give is immensely appreciated - and no gift is too small. Even if you can't give, please visit the site and share her story. Share her updates. Get the word out about Brain Cancer. You might touch someone who is going through this very thing! Maybe someone out there will be able to relate or share their story to help Mom through this.
Words cannot express the gratitude we feel from the outpouring of prayers and concern for mom. I know sometimes Dad is brought to tears from the amazing support they have received.
Anyway, thanks for reading. There are so many milestones ahead - and I want to share them with you. So keep coming back.
Well, she made it.
She made it through the diagnosis of her brain tumor.
She made it through a heart attack.
She made it through brain surgery to remove a poisonous tumor.
We learned on Friday that the tumor was removed. We were told that it was completely removed. The physician that told us this little tidbit was not the actual surgeon that performed the surgery. It was one of his colleagues.
Shortly after we received this news, the surgeon came in and elaborated.
Maybe we were all just high on the news that the tumor was gone. Maybe we were just so incredibly hopeful that this was over.
I know we weren't naive. I know we knew better.
But the news he delivered was crushing... and I think we all knew it was coming sooner or later.
Some preliminary tests had come back. Yes, the tumor was removed ("grossly", meaning most of it) - but the cancer was not. Her brain is still littered with cancer cells.
He said it. That word.
Cancer. It was true.
Grade 4 Glioblastoma.
You can find out more about what a Glioblastoma is on the American Brain Tumor Association's website. I set that link to take you right to the glioblasotma page.
It's gnarly. Nasty. And it looks really bad in black & white.
But we have to remember that every person is different. Every person fights differently. There are statistics, and there are miracles. In my opinion, Mom's story is already nothing short of a miracle.
Immediately following her surgery, it was so hard to look at her. She ate like a little bird. She could barely speak. She could barely open her eyes.
We were all waiting in such anticipation to see how she was. Did she know who we were? Did she remember what she was doing here?
By the late afternoon / evening the day of surgery, she was so exhausted and on regular doses of pain meds that all she did was sleep.
And we were still waiting to see.
The next day, she progressed more. Physical Therapists came to assist her with simple things. They asked her questions about how she felt, what was missing, what was difficult.
By the second day after surgery, she was carrying on full conversations. Reminiscing back 25-30 years.
But when the Therapist asked her what the date was, she couldn't answer. When asked what month it was, she couldn't answer. When asked what year it was, she immediately said 2013. Yay!
She could name every person that was in the room with no problem. She could feed herself with ease. However, reaching for things and picking them up was quite a task.
Mom described it as though you were standing in front of a mirror. There's a tube of chapstick on the counter and you reach for it, but you have to use the mirror to guide you. Naturally, you may tend to go to one side or another of the item. Or, you may think it's farther away than it really is. But you can ONLY use the mirror to find it. You cannot take your eyes away and see the item in its real position.
And she had no peripheral vision on her right side. You had to pretty much be directly in front of her for her to see you.
So, her vision is a little off.
She could not stand on both feet with her eyes closed. She would fall over.
She could not walk - anywhere - without assitance and holding onto the wall for guidance.
She could touch her nose, and then reach out and touch a hand in front of her with her eyes closed.
She could not do "flap jacks" with her hand. Take one hand and hold it out palm up. Take the other hand and flip flop it on top of the other - back & forth. She could not do that.
She could not complete certain sentences using proper English. She forgot which words went together to complete a sentence.
She had a hard time reading (her dinner menu, for example) and having a picture in her mind of what she was reading. Immediate memory was not clear.
At least on this day.
Today, day 3 post-op, those symptoms are already subsiding. She is talking on the phone, walking through the house mostly without assistance. She is reading better. Her sentences are more accurate and "normal". She has her incredible sense of humor back. She remembers things, stories, people.
My dad described it as something "amazing" to watch as she continues to get better hour after hour.
This is nothing short of a miracle.
We are celebrating small victories. And we will be doing this for a long time. I told my dad on Friday (surgery day) that that was the easy day. And that was a hard day. The rehabilitation, chemotherapy, radiation, side effects - and all of things that will occur that we can't even comprehend right now - they're coming.
There was a time recently that I was feeling incredibly overwhelmed - like I would never reach the shore. My dad asked me, "How do you eat an elephant"?
"One bite at a time".
Well we're going to liken this battle with cancer to eating an elephant (but just a little - obviously cancer is very real, and eating an elephant is just not).
Both seem humongous.
But taken one step at a time, one bite at a time, when you look back, you realize how far you've come. It isn't insurmountable.
I've recently also learned that the medical bills are piling up. They have insurance, and their yearly out of pocket deductible has already been met. Their portion of each bill after insurance is in the thousands of dollars. And it's only the beginning.
I set up a fundraiser for them to help ease the pain of medical bills on top of everything else. My dad still works a full time job. They have a full time friend and caretaker who comes to the house every day to help Dianne get around, cook, you name it. Dad is keeping all the appointments, paperwork, transcripts, physicians (neurology, oncology, cardiac, etc) - everything - straight.
If there was anything I could do to lighten that load I would. This is Dad's new life now. As a family, and as a community, this is when we're called to help one another. Here's a link to the fundraiser page: Dianne's Battle - A Fighter's Journey With Brain Cancer. You can go to that page to get updates, donate, comment or leave a message for Dad & Di. You can give anonymously or not, you can keep your donation amount private. Donations are received through PayPal, but you can give using PayPal, or any credit / debit card without using PayPal. Any gift you can give is immensely appreciated - and no gift is too small. Even if you can't give, please visit the site and share her story. Share her updates. Get the word out about Brain Cancer. You might touch someone who is going through this very thing! Maybe someone out there will be able to relate or share their story to help Mom through this.
Words cannot express the gratitude we feel from the outpouring of prayers and concern for mom. I know sometimes Dad is brought to tears from the amazing support they have received.
Anyway, thanks for reading. There are so many milestones ahead - and I want to share them with you. So keep coming back.
Subscribe to:
Posts (Atom)