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Prayers for my dad
#31
How did it go Dave?
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#32
Went to see him after work today. The surgery was successful, they did a follow up MRI today that showed they were able to completely remove the tumor from his brain. There was some fluid that had to be drained afterwards but that tube has already been removed as well as his catheter so he can piss on his own. They have him on around 6LPM of Oxygen currently, I didn't completely understand - something about hyperoxygenation and there being air trapped in his head after they put him back together, supposed to help alleviate that and lessen the pressure up there. Pretty sure they had to use a metal plate and screws and I can't imagine how that would feel in your skull.

He was (understandably) pretty out of it and complained that his head hurt (no *poopy*.) Physical and Speech therapy came by during the course of the day, he was able to get up and complete a lap of the floor with a walker which is awesome. Did pretty good with the speech therapist as well but will likely need some additional help there. He was pretty quiet when I talked to him, I had to get pretty close to hear him. He was able to articulate himself just fine for the most part; however, there were a couple times where he was clearly struggling to verbalize whatever he was thinking in his head and that was frustrating for him. He cried a couple times when I was there - kept saying he felt like the surgery didn't go well or something was wrong with him or something along those lines and we kept trying to tell him how it was a success and that he's doing great. He said he was scared...I don't think I've ever heard him use that word in reference to himself - not when my mom had her brain aneurysm a while back, not when he was first diagnosed w/ cancer, never. I told him, look man, they had your head open less than 24 hours ago and were poking around in there; you can't expect to be 100% back to normal already. Told him that it's ok to be scared and that he needs to try and think positively and just keep doing what he's doing.

I still haven't processed it all, personally. Seeing him like that today was hard. I kept telling myself the same thing I told him - that they were all up in his brain just yesterday and it's going to take time for him to get back to his normal self. It's hard not to be scared about how difficult this journey will be, I'm honestly just trying not to even think about it. Just going to take it day by day and hope for the best...
Jackie-O Wrote:My house is home to the illusive, yet powerful, Nom Noms. He will eat your babbys. His eyes are like laser beams, his claws are sharp talons. He slaps like a pimp and makes dogs run in fear.
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#33
I'm not sure what that means, but thanks (?)

Went and visited him yesterday, he's been moved from the hospital to a rehab facility across the street. He was in a major depressive state the first week after the surgery but has started coming around to being more like his old self. He's now able to walk without the assistance of a walker and his speech is pretty close to normal - the way he talks reminds me of someone who's had a mild stroke, it's less strong and has a kind of hesitance to it but he's easily understandable and is usually able to say what's on his mind. The goal is for him to discharge next Wednesday which would mean he gets to be home for Christmas! He's going to have to continue outpatient speech/physical/occupational therapy but seems much more positive about what's happened and what he needs to do going forward.
Jackie-O Wrote:My house is home to the illusive, yet powerful, Nom Noms. He will eat your babbys. His eyes are like laser beams, his claws are sharp talons. He slaps like a pimp and makes dogs run in fear.
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#34
A positive attitude goes a long way. If he can start being his normal self it's definitely a step in the right direction. I just went through the whole stroke thing with my grandma. I found the hesitation in speech was more frustration on her part. The therapy was annoying shut worth while. It's been maybe a year now and I'd say she's 90% back to how she used to be. Keep your head up man he'll pull through.
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#35
*WARNING: SUPER LONG POST AHEAD*

Man, crazy that it's been almost a year since I've posted about my dad. Some of you guys may have seen me post on Facebook recently but figured I'd update the few of you who know me.

Dad discharged from the Rehab place before Christmas last year and was back to work not too long after that. Things improved to the point where he was working full time and even travelling out of state for site visits. He was diagnosed with a (smaller) second brain tumor in May and they decided on targeted radiation therapy this time instead of going in and operating again. Much like when he was going through IL2, he would take off work long enough to get treatment and then go back as soon as possible. We knew that work was keeping dad busy and happy so we didn't worry about it. About 3 months ago the dr's stopped dad's chemo due to the various side effects he was feeling. The tumors hadn't shown any growth and, in some instances, had actually decreased in size.

Over the last two months we've noticed dad acting a little more confused at times - repeating questions or statements more frequently, having trouble remembering appt dates/times, etc. I think we all kind of downplayed it as not being significant. Then about a month ago dad was sent home from work and told he could not return without a dr's note; it sounds like someone reported his confusion to his boss. Dad was pissed. Honestly, I'd been wondering for weeks how what I was seeing at home wasn't a problem at work but had just blown it off. Dad's next MRI and CT scan indicated the tumor in his brain had doubled in size from the time they stopped his chemo as well as growth to the tumors in his lungs and a new tumor in his liver. The neurologist told dad he could not go back to work and that they would follow up in 2 months.

This scared me, personally. I knew work was one of the few things that really kept dad motivated, he's a busybody and hates to be stuck sitting idle. From here, things have progressively devolved. He's been more and more confused in the weeks following his suspension from work. Thanksgiving Day, we had everyone over to our house for the afternoon. After we ate dad disappeared outside to smoke, but then took off in the car without saying a word. My mom called him maybe 30 minutes later and he gives her some song and dance about going to the gas station and that he'll head back to the house. Maybe an hour after that he still hasn't shown up and now he's not answering his phone either. I jump in my car and head out towards the gas station I know he would have gone to. A couple minutes after I leave I get a call from dad saying he's lost. I ask him where he is and tell him which direction to go, I then turn around and head to intersect him and guide him home. This was dumb, I should have just told him to pull over right then and there because the cross streets he gave me was WAYYY off from where his gas station was. Needless to say, I don't manage to find my dad by heading towards where he says he is. I then get a call from the wifey telling me they have dad on the phone and that he's pulled off the road on a highway offramp and is scared to move and that I need to go pick up one of them and then go get him and the car. We call the cops and they find him right before I get there, we drive home and I don't really try to talk to him about it because I know he won't have an explanation.

The next day he disappears again. He tells mom he wants to go visit a friend in Lawrence (~20-30 minutes away) and mom says no because they have stuff to do. Dad gets mad and disappears into the garage for a smoke and takes off in the car. He doesn't pick up the phone for mom or me but responds to my texts to tell me he's in Lawrence and, among other things, looking for a good place to get a tattoo. This is a man w/ no tattoos who always talked mad *poopy* on my sister and I getting tatted. We end up calling the cops again and they find him in a mall in Lawrence where my mom goes to rescue him. Fast forward two more days to Sunday, we invite our parents to meet us for breakfast. Afterwards we go to my parents house to hang out for a bit before football comes on. Within 5 minutes, my dad is freaking out saying he can't see. But then, when we say we're going to take him to the hospital, he sits down and says he is fine and can see just fine. "I've got this," he says. We convince him he needs to go to the hospital and I help him into the car so mom can take him.

Dad spent this whole last week in the hospital. During that time the hospital has been entirely unhelpful in communicating to us what they are doing, what is going on with dad and what the plan is. Wednesday, my dad managed to escape from his hospital room and from the floor entirely. He called my mom and told her he was sitting outside his Dr's office waiting for her to come pick him up. She had to call the Hospital police and have security find him and bring him back to his room. Finally, a friend of a friend put us in touch with someone on the Ethics Board at the hospital. Friday we got answers from the doctors - they were not answers we wanted to hear. The Drs told my mom that dad has likely less than 6 months left to live. He discharged home today and mom will have a home health care-type nurse who will come by to help some during the day. Tomorrow the Drs will determine whether or not to keep him on this new chemo drug they started when they did his last MRI/CT. If not, the home health care will switch to be hospice care. While I was not surprised to hear the Dr's prognosis for my dad, it still hit me like a ton of bricks. Dad has had cancer now for 2.5 years but it's finally hitting home that this is terminal and he's not going to be around eventually.
Jackie-O Wrote:My house is home to the illusive, yet powerful, Nom Noms. He will eat your babbys. His eyes are like laser beams, his claws are sharp talons. He slaps like a pimp and makes dogs run in fear.
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#36
Man, i'm am truly sorry to hear that your dad and family are going through this. As close as all of us are here in the Squad it saddens me to hear one of you going through hard times like this. Family can't be replaced and the love you have for them makes you hurt even more. I pray that your father will be around as long as possible so you all can enjoy your time together. My heart is with you and your family Dave.
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#37
I had seen your post about the Hospital losing track of him, was kinda a bit confused about it and I had meant to text you about it sooner. Really sorry to hear about his declining health, it had seemed for a while he was really pulling through. It's going to be tough man, no sugar coating it, if you need anything you know we're all here for you bud.
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#38
Thanks, Donte and Leo, appreciate the kind words. So far it's just my mom and dad home alone, no paliative or hospice care is helping currently. We're actually planning to sit my mom down and talk to her about it this weekend because she's putting too much on herself and not doing the things she needs to do to take care of herself so that she can continue to care for dad. Dad is much quieter these days and tends to sleep a lot. I hate seeing him like this but try to take comfort in the fact that I'm seeing him at all.
Jackie-O Wrote:My house is home to the illusive, yet powerful, Nom Noms. He will eat your babbys. His eyes are like laser beams, his claws are sharp talons. He slaps like a pimp and makes dogs run in fear.
Your resident smartass mod.
4 Doors FTW

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#39
Guess I'll add one final update to this...

Dad beat the odds and pushed past the 6 months the doctors told us he had. He started a new chemo drug for the cancer in his body and went through both targeted and and whole brain radiation for the tumors in his brain. The chemo was hard on him, a 1-hr treatment ended up taking 4 hrs because they had to slow the drip down or it would put his body into shock mode and his vitals would drop. His brain function improved to the extent that he was not disappearing randomly and understood that he wasn't able to drive any more. The memory issues were still there but we learned how to deal with it. Mom didn't end up getting home health to help her in the home - I think there was confusion about exactly how that would work for them as well as guilt at the thought of not being able to handle dad on her own. Regardless, things improved some and we've tried to spend as much time together as we can over the last year.

Unfortunately, the treatments were taking a toll on dad's body and the cancer in his brain grew and multiplied in the 6 month wait after his targeted radiation therapy. The cancer also spread to his bones, his scapula and one of his ribs were affected by this. His short term memory got worse and he began to get weaker physically - he would ask me the same thing (or tell me the same story) dozens of times each time I saw him. In January, we got together as a family and dad agreed that it was time to stop treatment. The chemo was helping with the cancer in his body but was also hurting him. Additional radiation was out of the question and that was the biggest problem area - his brain. When I went to the doctor's appointment with my parents, the doctors confirmed that it would be his brain that would kill him before anything in his body did. The doctor agreed with our decision to stop treatment and helped us reach out to Hospice to get help at my parent's house.

Within two weeks of stopping treatment, dad's health declined rapidly yet again. He started falling down around the house and didn't have the strength to get himself back up. His speech got harder to understand and his memory continued to fade. He began to fall even with the walker and transport chair in the house and he couldn't remember that he couldn't walk so he would try and get up every 5 minutes to do something and we'd have to tell him to sit down and that we'd get whatever he needed. I could tell that his brain was active and wanted to keep him moving but it seemed to have no direction or focus. The nurses suggested upping his ativan and morphine to keep him more sedated. Sadly, this ended up basically making him catatonic. He was stuck in bed and his speech was almost completely unintelligible. He would try and move but couldn't even sit up without help. Mom was really struggling with all of this and I could tell that she needed more help than she was getting. I asked about getting dad into hospice house and they get him moved over to Kansas City Hospice House on 2/11.

Luckily for me, I was able to take a couple weeks off of work in order to be there. I spent the last week dad was at home coming over every day to help out and just to be there. I spent the following week coming out to hospice each day to visit dad. I hated seeing him lying in bed - eyes glazed over, unable to speak or move or eat or drink but refusing to give in. His breathing got more shallow and I could hear the fluid in his lungs get worse with each passing day. His sister and one of his brothers came out from Indiana on Wednesday; his brother and I spent the night at the hospice house thinking it would be his last but it was not to be. Friday morning mom called me and told me the nurse indicated today was probably the day. My mom's brother had arrived the night before and we arrived at hospice at nearly the same time. My mom, uncle and I sat with my dad and talked and watched his breathing. Around 11:35, the nurse came in to check on him. Dad had been breathing moments before but as we stopped talking and focused on dad again his breathing stopped. We stared at him for what seemed like an eternity, finally he took a very small breath. He took two more breaths and then he was gone.

I feel like I should probably be more emotional about all this. I haven't had a lot of tears or anything so far. I think partially because I've been watching him die for years now, knowing that this was inevitable. Maybe partly because he hasn't been the same person since his first brain surgery a couple years ago. I am an emotional person but I tend to keep my emotions in check most the time and don't show much to the outside world. Whatever the reason, I'm glad I'm not an emotional wreck and my mother and sister have been handling things better than I expected so far as well. I'm worried about how mom will do once she runs out of tasks to complete related to dad's death but we'll be helping out and keeping an eye on her. I can't put into words what my dad meant to me, he was an awesome role model and all around good guy. I can only try to live up to the example he set...

R.I.P. John William Armstrong
8/19/1957-2/17/2017
Jackie-O Wrote:My house is home to the illusive, yet powerful, Nom Noms. He will eat your babbys. His eyes are like laser beams, his claws are sharp talons. He slaps like a pimp and makes dogs run in fear.
Your resident smartass mod.
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