Today is 3 days since surgery and I am gushing with pride. Dan has come a long way in just 3 short days. Remember I mentioned in my last post that he couldn't use his left arm or hand and barely lift his leg? Well today during his PT and OT evaluation, he was able to walk 200 feet! Granted he had to use a cane and have someone next to him for support, but he WALKED!! And he is moving his arm up and down too. His hand is more challenging but he is practicing. We know it's not dead so in a matter of time, all his strength will be back. Seriously amazed at his strength in such a short time.
Dan spent the weekend in here recovering while watching TV. Really, that's all he has done the last few days, I mean other than being online too. We knew he wouldn't be going home until he got evaluated by the therapy team because they talked about him possibly going to a rehab facility for a week or so to jump start his therapy and we wouldn't see them until today.
The PT was very pleased with his strength. She got him up out of bed, tested his balance standing, fitted him for a cane, and took him in the hallway to practice and even attempt steps. He did very well and said that since he's 'borderline' meaning he could really benefit from inpatient rehab but as long as he has 24/7 supervision, she would OK him to get discharged to home but she had to wait until the OT eval was done. The OT was also very pleased with all the tests she performed. She tested all of his fine motor skills, mental memory tests (I failed it but he passed, lol!), and more. She did find that his left foot was tight and he has a drop foot or foot drop (can't recall all these terms) which is a weakening of the muscles that enable him to flex so he has to wear a boot that puts his foot in a 90 degree position. It has to be worn to sleep and during the day (4 hrs on/off). That should be fun for him. So basically, both agreed he can go home and immediately begin his outpatient PT and OT again. Whew, one step closer to our family getting back together. We have to wait for the surgeon to give his green light too so crossing fingers it's tomorrow.
Tomorrow morning, Dan has an appointment with his radiation oncology team who we actually already met last week. We had a consult scheduled but due to his unexpected hospitalization, they came to his room to do it. Dr. Kleinberg is a radiation oncology expert at the Kimmel Cancer Center here and he specializes in brain tumors and specifically glioblastomas. He came to see Dan on Wednesday of last week which was a really bad day for Dan but I was able to meet with him and his fellow to go over what is expected, side affects, etc. So tomorrow at 9 am Dan will have his 'simulation' appointment and get fitted for a radiation mask. The mask is made of a plastic material and helps position the head when treating the brain during radiation. I believe they said he will get a CT and MRI tomorrow too that are used for treatment planning. Than a team of doctors and super smart physicists get together and simulate his treatment. The simulation takes a week and than Dan is able to begin treatment - which will probably be in about a week and a half.
We are also supposed to meet with the chemo team but they won't meet with him while he's inpatient so it will be delayed a week due to the holiday. We did have a short consult with them on Thursday of last week too and again, his team leading with Dr. Holdhoff is an expert in malignant gliomas.
So that's all I got for now. Dan wanted me to let everyone know that he is doing great!
Monday, November 21, 2011
Saturday, November 19, 2011
Here we go again.
Warning - this is long!
We did not expect to be back at Hopkins until Dan's treatment was to begin but unfortunately he had a pretty major setback this week. He was recovering so well, really. He was even back to himself bitching about my driving and asking to start driving himself soon (which terrified me, not going to lie!). And I was back at the office pretty regularly since my mom was there to prepare meals and my stepfather to drive him anywhere he wanted to go.
So let me backtrack a bit...
Monday - My mom called me at work around lunch saying he had not gotten out of bed and had a headache. He had an OT appt and didn't want to go. He texted me before I left the office asking me to call his doctor to see if we can increase his Decadron which is the steroid he's been on that helps with pressure. He said he was feeling a lot of pressure. When I got home later he progressed to vomiting and couldn't keep the pills down. I was pushing to go to the ER but Dan insisted no. I called the on call neuro once everyone was in bed and he asked me a list of questions and advised me to try to keep him comfortable and get through the night and that if we went to our local ER they would hear his recent history and get him transferred out which is no fun after hours.
Tuesday - I was up half the night with him and emailed Dr. Weingart with a list of his symptoms at a very early hour because I knew something was seriously wrong and he needed medical attention ASAP. I was surprised to get a reply at 6:30 am telling me to bring him to the Hopkins ER. Getting him up to go was difficult since he was so sick and I felt so incredibly helpless. It's so hard watching your spouse in so much pain and there is NOTHING you can do. NOTHING. He was immediately taken back upon arrival and after speaking with the neuro resident and the CT scan showed swelling, they told us he was being admitted. He got settled at around 10 pm and I went home to rest and to be there when the kids got up the next day.
Wednesday - I dropped off the kids and headed down to see Dan and I cannot even explain how I felt seeing him. I guess i expected to see him sitting up watching TV and that the meds would've kicked in over night. I was wrong. There just are no words and I think it was the first time I cried so hard that a nurse had to comfort me. Dan was so out of it that he didn't even notice. I mean, WTF happened overnight was my question. When I left him on Tuesday he was able to walk to the bathroom alone and when he asked me to help him when I got there, I had to call for help. His left leg was just too weak to stand on and hold his weight. He was in a ton of pain and just moaning in bed begging for morphine. He was taken for an MRI and his severe pain lasted ALL day. He had double vision and pretty much kept his eyes closed all day too.
That afternoon, Dr. Weingart came by and delivered the news we did not want to hear. The MRI showed that the tumor that they couldn't get to fully last time has already increased in size - hence the fast onset of symptoms - and he would have to have surgery again. He explained that this time it's very risky based on its position and we won't know until after the surgery if his left side has movement or not. Seriously, it's not even a month and it's grown. And his symptoms were wayyyy worse than even before the first surgery. My head was spinning and Dan was barely awake so I just had to leave the room to process it all. Thankfully my sister and friend dawn were there to be the voices of reason. I came to terms with the fact that he was in the very best hands possible and even if he had limited motion on that side, he was going to be alive and that was all that mattered.
Thursday - Dan made a big improvement when I arrived on Thursday morning. He was up in bed watching TV and said he was no longer in pain. He immediately asked for his phone too which is always a good sign. We found out that surgery was scheduled for Friday so I caught up on work in the room while Dan hung out and even had a visit from his two buddies (Stalls and H as he calls them). I have to say that it was so great seeing him laugh as they reminisced and talked sports. Dan had a smile on his face most of the visit and I realized just how much I missed that smile. So while he had a distraction, one of my best friends Mimi arrived for me. She came to give me a hug and bearing magazines to help occupy my mind with something else. Since Dan was doing so well, I was able to leave to get the kids and have dinner with them. I needed it and so did they.
Friday - Dan was taken to pre-op at 11:00 and surgery was to begin shortly thereafter and expected to be done by 3:30. It was a long day of waiting. Those magazines came in handy and I did a lot of anxious eating. Finally around 5:30 they took me in to see him. He looked good and was very sleepy unlike last time where he was up telling jokes. He did immediately request a chocolate milkshake though! He was also very happy to see Rosemary again, she took care of him after his first surgery. She's just a sweet sweet soul.
Dr. Weingart came in to give us an update on know it went and said he was very pleased and was able to get the whole tumor out but (there's always a but) there are cancer cells in there that need to be treated with radiation and chemo ASAP. Additionally, these glioblastomas like to come back which is why treatment is so crucial.
Saturday - We did find out on Friday that his left side was in fact affected after surgery, and Dan was not able to lift his arm and his leg only a little bit. We've been told some of the lack of movement is from the swelling after surgery and it should continue to improve each day. He can't yet move his fingers on that hand but I saw the thumb moving when the nurse asked him to give a thumbs up and tonight he lifted his arm up a little by himself and it brought me to tears. I could see him willing it up and there it went. That's huge! I know he will get this movement back and it may be slow, but he's got the will and strength.
The rest of today I spent keeping him company while he watched sports. He was moved out of critical care tonight and he has his appetite again and hopefully should catch up on all the meals he missed the last 4 days. When I ask him how he feels he says he's ready to move on and recover at home. Atta boy! Last time he was discharged in 2 days but this time they plan to keep him longer I think due to the left side weakness. Hopefully he proves them all wrong and he gets out in 2 days again.
This is so long and I'm exhausted but I have to add that I find comfort seeing familiar faces since this is his third time on this floor. They all know us and our story and are just full of compassion. You never want to say "it's good to see you" under these circumstances but really, it's good to have the same faces caring for him.
Thank you again everyone for reading and sending all your thoughts, positive vibes, and prayers. They must be working!
We did not expect to be back at Hopkins until Dan's treatment was to begin but unfortunately he had a pretty major setback this week. He was recovering so well, really. He was even back to himself bitching about my driving and asking to start driving himself soon (which terrified me, not going to lie!). And I was back at the office pretty regularly since my mom was there to prepare meals and my stepfather to drive him anywhere he wanted to go.
So let me backtrack a bit...
Monday - My mom called me at work around lunch saying he had not gotten out of bed and had a headache. He had an OT appt and didn't want to go. He texted me before I left the office asking me to call his doctor to see if we can increase his Decadron which is the steroid he's been on that helps with pressure. He said he was feeling a lot of pressure. When I got home later he progressed to vomiting and couldn't keep the pills down. I was pushing to go to the ER but Dan insisted no. I called the on call neuro once everyone was in bed and he asked me a list of questions and advised me to try to keep him comfortable and get through the night and that if we went to our local ER they would hear his recent history and get him transferred out which is no fun after hours.
Tuesday - I was up half the night with him and emailed Dr. Weingart with a list of his symptoms at a very early hour because I knew something was seriously wrong and he needed medical attention ASAP. I was surprised to get a reply at 6:30 am telling me to bring him to the Hopkins ER. Getting him up to go was difficult since he was so sick and I felt so incredibly helpless. It's so hard watching your spouse in so much pain and there is NOTHING you can do. NOTHING. He was immediately taken back upon arrival and after speaking with the neuro resident and the CT scan showed swelling, they told us he was being admitted. He got settled at around 10 pm and I went home to rest and to be there when the kids got up the next day.
Wednesday - I dropped off the kids and headed down to see Dan and I cannot even explain how I felt seeing him. I guess i expected to see him sitting up watching TV and that the meds would've kicked in over night. I was wrong. There just are no words and I think it was the first time I cried so hard that a nurse had to comfort me. Dan was so out of it that he didn't even notice. I mean, WTF happened overnight was my question. When I left him on Tuesday he was able to walk to the bathroom alone and when he asked me to help him when I got there, I had to call for help. His left leg was just too weak to stand on and hold his weight. He was in a ton of pain and just moaning in bed begging for morphine. He was taken for an MRI and his severe pain lasted ALL day. He had double vision and pretty much kept his eyes closed all day too.
That afternoon, Dr. Weingart came by and delivered the news we did not want to hear. The MRI showed that the tumor that they couldn't get to fully last time has already increased in size - hence the fast onset of symptoms - and he would have to have surgery again. He explained that this time it's very risky based on its position and we won't know until after the surgery if his left side has movement or not. Seriously, it's not even a month and it's grown. And his symptoms were wayyyy worse than even before the first surgery. My head was spinning and Dan was barely awake so I just had to leave the room to process it all. Thankfully my sister and friend dawn were there to be the voices of reason. I came to terms with the fact that he was in the very best hands possible and even if he had limited motion on that side, he was going to be alive and that was all that mattered.
Thursday - Dan made a big improvement when I arrived on Thursday morning. He was up in bed watching TV and said he was no longer in pain. He immediately asked for his phone too which is always a good sign. We found out that surgery was scheduled for Friday so I caught up on work in the room while Dan hung out and even had a visit from his two buddies (Stalls and H as he calls them). I have to say that it was so great seeing him laugh as they reminisced and talked sports. Dan had a smile on his face most of the visit and I realized just how much I missed that smile. So while he had a distraction, one of my best friends Mimi arrived for me. She came to give me a hug and bearing magazines to help occupy my mind with something else. Since Dan was doing so well, I was able to leave to get the kids and have dinner with them. I needed it and so did they.
Friday - Dan was taken to pre-op at 11:00 and surgery was to begin shortly thereafter and expected to be done by 3:30. It was a long day of waiting. Those magazines came in handy and I did a lot of anxious eating. Finally around 5:30 they took me in to see him. He looked good and was very sleepy unlike last time where he was up telling jokes. He did immediately request a chocolate milkshake though! He was also very happy to see Rosemary again, she took care of him after his first surgery. She's just a sweet sweet soul.
Dr. Weingart came in to give us an update on know it went and said he was very pleased and was able to get the whole tumor out but (there's always a but) there are cancer cells in there that need to be treated with radiation and chemo ASAP. Additionally, these glioblastomas like to come back which is why treatment is so crucial.
Saturday - We did find out on Friday that his left side was in fact affected after surgery, and Dan was not able to lift his arm and his leg only a little bit. We've been told some of the lack of movement is from the swelling after surgery and it should continue to improve each day. He can't yet move his fingers on that hand but I saw the thumb moving when the nurse asked him to give a thumbs up and tonight he lifted his arm up a little by himself and it brought me to tears. I could see him willing it up and there it went. That's huge! I know he will get this movement back and it may be slow, but he's got the will and strength.
The rest of today I spent keeping him company while he watched sports. He was moved out of critical care tonight and he has his appetite again and hopefully should catch up on all the meals he missed the last 4 days. When I ask him how he feels he says he's ready to move on and recover at home. Atta boy! Last time he was discharged in 2 days but this time they plan to keep him longer I think due to the left side weakness. Hopefully he proves them all wrong and he gets out in 2 days again.
This is so long and I'm exhausted but I have to add that I find comfort seeing familiar faces since this is his third time on this floor. They all know us and our story and are just full of compassion. You never want to say "it's good to see you" under these circumstances but really, it's good to have the same faces caring for him.
Thank you again everyone for reading and sending all your thoughts, positive vibes, and prayers. They must be working!
Friday, November 11, 2011
Three weeks later.
This may turn into a whiny post but I feel like I am allowed to whine right now. I am sick (literally I have a cold) and exhausted. This weekend is 3 weeks since Dan came home from the hospital after his brain surgery. What a crazy and busy few weeks it's been. I am not going to lie and sugarcoat things since I am just not that way, I will be honest and say I don't like our new normal right now. Not.at.all.
The past 3 weeks have been full of taking Dan to his PT and OT appointments (with the help of some family too), keeping track of his meds, running errands, taking the kids to birthday parties, driving them to and from daycare (since we are trying to keep things normal for them), keeping up with Dan's appetite, making sure everyone is getting lots of love, kisses, cuddles, and attention....oh and did I mention I work full time?! So basically if my parents weren't here, we wouldn't be eating or have any clean clothes or dishes.
Don't get me wrong, life was hectic prior to his brain surgery since we do have a 2 and 4 year old but now I am doing it all alone and this is not what I signed up for at all. I just want my husband back to the way he was before and I want my kids to have their daddy back rolling around on the floor making forts out of blankets and pillows and playing hotwheels and football. I'm not the fun one. That's Dan. He's the creative one making garages out of shoe boxes, teaching them what every make and model of their hotwheels cars are and making a game out of every car ride too. I just want to yell and scream that it's not fair and trust me, I do yell and scream but never in front of my kids and husband. I guess the "why him, why us, why now" is normal but really, WHYYYYYYYY DAN?????
So every weekend around this time when the kids are fast asleep and I finally get to sit down, I give myself a huge pat on the back that I made it through another weekend. That sounds so silly but it's not even a joke, I say to Dan "I made it! and he says "good job babe." I think to myself how much longer will I have to do this alone? I hate this unknown and I know Dan does too. I cannot even imagine how he feels and he's not the best at communicating his feelings. I ask him often and he tells me he is ready to fight. He is brave and I need to be strong and brave for him too.
This week is the week it will all begin. Dan has been scheduled for his radiation and chemotherapy consultations. We've been told his treatment will begin immediately. I will update at the end of the week once we know more.
Keep the positive thoughts and prayers coming. Your words of encouragement truly lift us up.
Thank you!
p.s. I realize this post is all over the place rambling but you can see how my mind is working these days!
The past 3 weeks have been full of taking Dan to his PT and OT appointments (with the help of some family too), keeping track of his meds, running errands, taking the kids to birthday parties, driving them to and from daycare (since we are trying to keep things normal for them), keeping up with Dan's appetite, making sure everyone is getting lots of love, kisses, cuddles, and attention....oh and did I mention I work full time?! So basically if my parents weren't here, we wouldn't be eating or have any clean clothes or dishes.
Don't get me wrong, life was hectic prior to his brain surgery since we do have a 2 and 4 year old but now I am doing it all alone and this is not what I signed up for at all. I just want my husband back to the way he was before and I want my kids to have their daddy back rolling around on the floor making forts out of blankets and pillows and playing hotwheels and football. I'm not the fun one. That's Dan. He's the creative one making garages out of shoe boxes, teaching them what every make and model of their hotwheels cars are and making a game out of every car ride too. I just want to yell and scream that it's not fair and trust me, I do yell and scream but never in front of my kids and husband. I guess the "why him, why us, why now" is normal but really, WHYYYYYYYY DAN?????
So every weekend around this time when the kids are fast asleep and I finally get to sit down, I give myself a huge pat on the back that I made it through another weekend. That sounds so silly but it's not even a joke, I say to Dan "I made it! and he says "good job babe." I think to myself how much longer will I have to do this alone? I hate this unknown and I know Dan does too. I cannot even imagine how he feels and he's not the best at communicating his feelings. I ask him often and he tells me he is ready to fight. He is brave and I need to be strong and brave for him too.
This week is the week it will all begin. Dan has been scheduled for his radiation and chemotherapy consultations. We've been told his treatment will begin immediately. I will update at the end of the week once we know more.
Keep the positive thoughts and prayers coming. Your words of encouragement truly lift us up.
Thank you!
p.s. I realize this post is all over the place rambling but you can see how my mind is working these days!
Wednesday, November 2, 2011
What Cancer Cannot Do.
Last night as we were leaving Carson's end of season soccer team dinner, one of our friends handed me a bag and said it was something for Dan and I.
Let me back up and explain more about this friend. We met Jenn and her husband Tim through our sons who were in the same daycare for the past few years. I used to see them at pick up and drop off and say hi in passing but vividly remember the time they sat behind us during one of the school's performances when the different classes sing for the parents and as Tim cracked jokes and Jen nudged at him to stop I thought, they are just like us! I knew I liked them. They seemed like a lot of fun and as we got to know each other through school events, t-ball, soccer, etc, I was right. They are just like us.
So after the kids settled in bed, we opened the card and bag and there was a framed poem with a heartfelt note from Jenn explaining that this poem was passed back and forth to Jenn and her sister when Jenn's nephew was diagnosed with Lymphoma as a young child. This child is now a healthy active boy who beat the cancer but I get chills just thinking about what her family went through at the time as no child should ever have to deal with something so awful.
Here are the words from the poem:
What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
- Author Unknown
Thank you jenn for sharing your story and for passing on the poem to us. No dry eyes for us last night, that's for sure. We were very touched.
Let me back up and explain more about this friend. We met Jenn and her husband Tim through our sons who were in the same daycare for the past few years. I used to see them at pick up and drop off and say hi in passing but vividly remember the time they sat behind us during one of the school's performances when the different classes sing for the parents and as Tim cracked jokes and Jen nudged at him to stop I thought, they are just like us! I knew I liked them. They seemed like a lot of fun and as we got to know each other through school events, t-ball, soccer, etc, I was right. They are just like us.
So after the kids settled in bed, we opened the card and bag and there was a framed poem with a heartfelt note from Jenn explaining that this poem was passed back and forth to Jenn and her sister when Jenn's nephew was diagnosed with Lymphoma as a young child. This child is now a healthy active boy who beat the cancer but I get chills just thinking about what her family went through at the time as no child should ever have to deal with something so awful.
Here are the words from the poem:
What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
- Author Unknown
Thank you jenn for sharing your story and for passing on the poem to us. No dry eyes for us last night, that's for sure. We were very touched.
Subscribe to:
Posts (Atom)