I took a day off from blogging yesterday. I was so emotionally drained and tired that I slept instead. That was probably a good decision. Fortunately I have an awesome mother who has been taking notes and writing updates, so I can pass on info without having to do too much more thinking. This is me, totally cheating, and copying her e-mails into my blog so people know what's going on...
This one is from Thursday night:
I stayed with Mark last night, when Rachel and Elaine went home to get some real sleep! He slept deeply until 2am. He was hungry and was able to eat jello - 2 containers - of somewhat real food :-). Before that he had only had apple juice and he really wanted more food! He was able to hold the jello container in his left hand and feed himself with his right - all while lying down and not really able to see what he was spooning. Mark also suggested that Rachel should change her cell phone ring to, "Mommy, mommy....mommy...". Katie's has "Randy, Randy, Rannnddyyy", but Mark wanted Jason or Emily to record, "Mommy" for Rachel.
Mark wanted to change positions, but with the brain fluid drain that he has in his head, he can't really move his head much and not allowed to lie on his side. But the nurses came in and rolled him a bit so that they could put 2 pillows under his right side and give him some relief.
Mark wanted to call Rachel at 2:50am and I suggested that he might want to wait and let her sleep a little longer - he said that he could wait for a little bit. I got online a few minutes later and saw that Rachel was online. I texted her to make sure she was awake, she was and happy to talk with Mark. They chatted for a few minutes and then Mark was happy to go back to sleep.
They came to get him at 3:35 for a CT scan. They do them during the night so that they are ready for the doctors when they do their rounds in the morning. They wheeled him out in his bed and brought him back about 20 minutes later. He was able to get back into a deep sleep until they woke him up at about 6 - during shift change when they check all his vitals. They started asking him questions to check his mental conditions. The first question was, "What day is it?" I thought real hard and I didn't know the answer! Neither did Mark. Next question, "What is the date?" I only knew that because they had made a big deal of yesterday being May Day. Mark did know what year it was though.
Then she asked Mark some interesting questions - Do you use a hammer to pound a nail?
Mark was able to smile a real, 2 sided smile this morning, the left side of his face was working again. He was able to squeeze with his right hand and slightly move his left side, or at least feel when they were touching.
This morning he had a clear liquid diet and had chicken broth and yogurt - followed up with french toast and scrambled eggs, after the doctor cleared him for real food. Mark was able to move his left hand/arm up onto his stomach by himself to hold the yogurt container - way to go Mark!!!!
Mark started physical therapy this morning, trying to build up his strength in his left side - they came twice, once in the morning and once in the afternoon. He walked a few steps to the wall and back again to the bed. Not very far, but at least he's moving! In the afternoon he was able to walk across the room twice!
When I got back to the hospital in the afternoon, after my nap, most of the people were in the waiting area instead of in Mark's room. Rachel was with Mark and they were letting them have some time together. Katie went in after a while to check on them and both of them were asleep - so of course she took a picture!!!
At 6pm food magically appeared in the waiting room for those of us at the hospital - there must be pixie dust here, because it happens every night. There was a steady stream of people waiting to visit Mark this evening - aunts, uncles, cousins, grandma.... even the kids got to visit him. Nate, Doug and Cindy came with the kids, so it was a regular party in the waiting area!!! Only a few went in at t time so as not to overwhelm Mark - but he was rather tired by the end of the visits.
Everyone has left and I'm now with Mark for the night. He has had a pain pill (which he hasn't needed many of) and hopefully will get some good sleep.
And here is one from Friday morning:
After an evening filled with many visitors; everyone left by 9:30, Mark had been given a pain pill and was settled down for the night, Rachel and Schofields left and I took up watch in Mark's room. I stayed awake quite nicely until midnight, when I gave up and went to sleep. I slept until 2, sitting up in a chair - I knew the fact that I can fall asleep anywhere would come in handy sometime!
The brain drain fluid is much clearer today than it was last night - a good sign I'm assuming. They removed the blood pressure line that was measuring it internally & consistently and he now only has a cuff that measures it once an hour.
Mark woke up at 3:30 and wanted to use my phone to call his mom. He was easily talked into waiting until later in the morning. He also is looking forward to seeing the kids again today! Then we had a fun time chatting about all kinds of things; BYU football, history and our trip to DC, the Single's regional conference, a movie Mark had seen at work..... It was fun to have some time with him.
While we were chatting I noticed that his foot was moving - and it looked like his left foot. So I felt through the blankets to find his right foot and sure enough, Mark was moving his left toes and foot! I congratulated him and got a big smile! So I asked if he could move his left arm. He used his right arm to lift it up and then held it up by itself! Progress is happening :-).
Rachel and I talked about bringing Emily and Annie to visit Mark in the morning while the other kids were at school. During the day there aren't so many visitors and Mark would LOVE to see the kids and have them snuggle with him. Mark really liked that idea. Then we can bring all the kids to visit later in the day when the school kids are home. I think it would do Mark good.
At 5am Mark said that he was hungry, but the food service didn't start until 6:30. I told him that I would be delighted to go to the 24 hour cafe on the bottom floor and get him something. He asked for pancakes and eggs. So after telling him not to go anywhere, I left him to find him some food. Well, when I got to the 24 hour cafe, I found it wasn't really a 24 hour cafe - it had closed at 2am. So I got in the car and drove 2 blocks to McDonalds to get some food for him. I bought a pancakes, eggs, muffin, sausage meal and drove back to the hospital. When I got back to the room, Mark was still here, but sound asleep! So I did what any normal person would do, ate the food and hoped that he wouldn't wake up until 6:30 :-). It is 6:20 and he is stirring, so I might be okay with having eaten his food!
Another item that we learned yesterday was that after Mark leaves the ICU, he will spend 2-3 days in the regular part of the hospital and then he will go to a re-hab center - there is one in this hospital - for another 3-10 days to have physical therapy to strength his left side, before going home. We haven't heard anything about when he will be starting radiation or chemo. The CT scan that was taken yesterday morning for a baseline of post-surgery looked good the doctor said.
Well, shift change will be happening and others will start to arrive soon, so I had better send this off before I head home to sleep.
And here is Saturday afternoon's update:
Yesterday Mark had his brain drain tube removed, his IV drip removed, the catheter removed, bandages on his wound removed.... he is really improving and impressing the doctors! But..... because the catheter was removed, Mark would be using either a urinal in bed or the toilet through the night - and he didn't really want his mother-in-law being the one staying the night with him that night :-). So LaMont, his dad, stayed with him and I got 10 hours of sleep :-)!!!
With the bandages removed we are able to see his scar. I pointed out that it was too bad that they couldn't have done it in the shape of "BYU". Rachel said that it looked like a "U" - which certainly wasn't acceptable. Then we realized that it also looked like a "C" from the right angle - C for Cougars, we liked that!
There are MANY staples in Mark's head - 31 to be exact, which is how old Mark is :-). He is feeling much better. He has done 2 rounds of physical therapy today, moving his arms / legs, walking around the ICU floor on his own power with a walker.... a FAR cry from when I had to move his arm for him to hold the jello!
Mark was moved out of the ICU back to the 4th floor this afternoon - in a wheelchair instead of a bed - and all of the rest of the wires were removed, he only has a blood pressure cuff left. Rachel just said that he is trying to stand up by himself and he will probably drive the nurses crazy on this floor!!!
Elaine learned that for Mark to qualify to go to the re-hab center he needed to be strong enough to take 3 hours of physical therapy, twice a day. Mark has decreased short term memory and his visual / spacial have been affected. The doctor had to get really close to those nerve areas during the surgery - but everything should return to normal when the swelling goes down.
Rachel and I were in the room while Mark was doing the physical therapy this afternoon and the look on Mark's face was just delightful as he was able to do more and more. He loved being challenged and pushed -his smile could have lit a small town. He said that he wanted to know when the walker races were being held because he planned on winning!!! His fast progress is encouraging us all!
The doctors were impressed with what he can do already, but warned about the 'porpoise' affect, little jumps up and then small downs..... over and over. The doctor said that if he continues on recovering quickly, they might keep Mark in the regular hospital a day or two longer and then send him home - by passing the re-hab part!
Mark passed, with flying colors, the mental/math challenges they gave him - but was surprised that the visual/spacial ones were hard. He was asked to draw a clock and put the numbers on it and he found that difficult to do - though he could answer what is 100 minus 7, what is 93 minus 7.
Mark is having an MRI right now so that they can double check how things look like in there. They were working through a rather small hole - though the incision is larger - and he want to make sure he didn't miss something that might have been hiding. They learned that the best time to do that is within 3 days of surgery. If they wait for a week or two, the brain starts to heal and reform and the MRI is less useful.
Here is a run down of what is happening at the Provo house: Becca and Bryan arrive about right now in SLC and will leave on Tuesday afternoon. William and Danielle are here and I think are leaving on Monday. Katie is leaving on Sunday evening, finishing up the school year as an IA, packing, tying up loose ends in Cedar and will move up Memorial Day weekend. Cindy says she is available to stay for 3 weeks, until Katie returns. I'm staying at least another week - we'll see how Mark is doing, what the biopsy shows, how Rachel and the kids are doing ..... and go from there.
Today was probably the best day ever! It took me a while to get to the hospital. Apparently there was a marathon in town today (turns out I've missed much of the news the last few days, and time has gotten away from me - maybe I would have known that if I had been paying any sort of attention...), and the route the runners took pretty much cut off my access to the hospital. From the canyon to the lake was covered in runners and the hospital and the house were on opposite sides of the route... My brother and his wife were heading our way from the other side of the 'runner blockade' and it took them a full hour sitting at one intersection to get across the street. So, I waited until I was fairly sure the beginning of the route would be mostly cleared out (who needs an hour sitting in a car with nothing to do but think? Not me, that's for sure), and then headed on a rather round-a-bout way of getting here. Turns out I missed rather a lot of stuff in those few short hours.
I missed physical therapy where he was able to walk with just a walker (and a spotter). He went out into the hall and back! His left foot/leg is working again! And he had to use his left hand to hold onto the walker - so improvement all around!
I missed speech therapy. I'm guessing that the speech therapy that he would have would be different from the kind Jason is getting. His pronunciation is fine. I'm thinking all the questions he had to answer (from Mom's updates) are from the speech therapist - but I didn't actually check that...
I came in right when the first doctor was making his rounds, and got to hear the tail end of that conversation. The doc was impressed at his improvements and said he was doing really well.
Poor Mark was getting hungry by that point and wanted lunch. His sister brought him some soup his Uncle Jim made just for him. He was finally about to get some rest when he realized he needed to use the restroom. Can I just tell you that was the best part of the day for me at that point (since I had missed actually watching any of the movement in the beginning of the day). I realize that Mark wanting to go to the bathroom doesn't (and probably shouldn't by any reasonable standard) really sound like the kind of thing that should get someone excited. The awesome part was watching him stand up - almost completely by himself - and then walk to the back part of the room to use the toilet. He walked like an old man - a bit slowly and sort of shuffling - but he walked! By himself! Without someone needing to move his left foot for him! And then he walked back to bed - all by himself! The aid who had come in to help get him up had left and it was just his regular nurse (a tiny little thing who could only barely have caught him if something went wrong) there keeping an eye on him. It was AWESOME! I almost cried at how exciting it was!
Then, just when he was finally about to get some sleep, in came the physical therapists. I LOVED watching him while he was working with them. He was so happy! He was laughing and joking with the guys and smiling the whole time. And! And! He was able to do all the stuff they asked him to do! His left side was a bit weaker and slower than the right, but he could move his left side!! Almost the same as his right! Yeah, it was pretty awesome, but the BEST part was when, at the end of his walk in the hall, the therapists had him stand on his own and give me a huge hug! He also snuck in a kiss... :) It was a good moment.
His other doctor came by just as Mark was walking out into the hall to go for a walk. The doc was super impressed with his progression! He actually seemed a bit pleased with himself for stopping at just the right point in the brain - I agreed with him wholeheartedly! The doctor also ordered an MRI for today (if there was a tech available - or tomorrow at the latest - Monday would be too late). He wanted to see how much was left. The CT looked like they had gotten most of it, but the doctor wanted to make sure they didn't miss a part that was tucked up underneath where they couldn't see. Depending on the size of what's left in there (there IS some left in there - he just isn't certain as to the size of it) he will start radiation in 2-3 weeks. If the pieces are smaller then they can wait a bit longer to let the incision heal before starting treatment. If the pieces are bigger, they are going to want to get at the stuff sooner.
And the order to move him out of ICU and to a regular room came in the middle of therapy, so they moved him upstairs right after that. Just after he got settled he realized he needed to use the restroom. He finished and was finally resting and snoring gently for about 5 minutes when the nurse came in to take him down to his MRI... He got back from that and not 10 minutes later my side of the family started showing up for visits. Most of them live out of town, and they all started showing up this weekend, so it's the first time he's really had a chance to visit with them. Our kids were part of the party, and they had more fun walking (well, running really - but I'm pretty sure that's not allowed in a hospital, so I'm going to pretend they were walking quietly...) up and down the hall between Mark's room and the chairs in the waiting room at the other end of the hall. His current room is a straight shot from the elevator, so the kids were always in view of Grandma and Grandpa (and Cindy who was NOT A FAN of the exposed staples in Mark's head - she was a trooper for even coming in the room, even though she stayed by the door and made sure to stay clear away of any possible view of Mark's head).
He finally asked everyone to leave so he could use the restroom, and right after that his dinner came. He is one tired guy! JB was with him while he was eating and she helped him get comfortable so he could sleep (I had gone out to say bye to my family while he was in the restroom, and while I was out food came so I stayed, ate and chatted for a bit). He asked to stay that way (asleep). I went in to get my bag, left him a note and headed home.
I confess that the last few days have been rather discouraging. Today, none of that came back. Today was all progress. I'm not oblivious to the fact that there will be bad days yet to come, but there is no way I am going to let some unknown future set backs ruin the awesomeness that was today!
Saturday, May 4, 2013
Friday, May 3, 2013
First Full Day in the ICU
I had my first decent night of sleep in a few days last night. That was a blessing! I had more energy to be helpful, which is good because Mark still needs a bit of help doing some basic things right now. I was able to be more cheerful with Mark and better able to have somewhat coherent conversations with visitors (I'm not convinced that I have been able to say much more than 'thank you for coming' for a while now). I am also now super proficient at hand holding. Mark says that the best part of recovery is getting to hold my hand. So that's pretty much what I do, all day. I sit next to him and hold his hand. And I smile at him. He likes to just look at me (which I consider a bit of an odd thing to do, but he says he enjoys it, so I let him). I always feel a bit bad when it's time for me to eat. Some times I can do that with one left hand, but mostly I'm not that good, so I have to let go. I usually only get a few minutes before his hand is reaching out for mine again. I eat in 2 minute intervals. It's a talent I'm working on. :)
But getting sleep has had a few negative side effects as well. For one, I stayed home to visit with the kids while they were getting ready for school (that was actually a good thing - I think the kids needed a bit of time with their mom) and because of that I missed being there while his doctors were doing their rounds and the first round of physical therapy, so any info I have from that is second hand. Also, with more sleep and time to think, I've been able to actually process some of this, and I haven't been quite as able to keep myself together as I could before. I was pretty good at being a complete non-thinking zombie and still putting on and keeping on a cheerful(ish at times) face for Mark. Once my level of functioning increased, I have had a bit more of a roller-coaster experience. I have much higher highs, and am able to find actual enjoyment in some of this new and different experience, but I still hit the zombie-like phase. The problem is that I can tell the difference now, and some of the reality of what is going on is sneaking it's way into the my thoughts and keeping a cheerful face on is harder in those moments. I have tried to keep under control so Mark doesn't worry any more than he already is - recovering from major brain surgery is enough of a chore without having to also worry about me and how I'm doing - but I haven't always succeeded. I have always managed to get back under control fairly quickly though (at least when he's watching me).
Mark really is doing well for what he's been through. Pretty much all of the visitors have told him that. I think he's catching on though. Tonight when he heard some family say that to him, his response was 'I'm going to take that to mean that I'm actually looking pretty rough, but that I have a reason too.' I guess that pretty much sums it all up.
His left side is still really weak. A few hours after surgery he was able to lift his left arm above his head and slowly hold up two fingers. He could hold his left leg up. He was even able to use his left leg rather well as he walked to the toilet (a good 20 feet). I think that walk, and then a tiny bit of a wait to get back to bed took a bit of a toll on him (that and the swelling in his brain has had time to increase a bit now). He decided to do all of this at shift change. The nurse was more than awesome, but as it becoming apparent that Mark was going to be a while still on the toilet, the nurse asked me if it was ok if he did a few last minute shift change stuff while I stayed nearby. We only waited about 5 minutes, but Mark was got weaker and needed much more help getting back to bed than he did to get to the toilet. Today he can move his left arm up just enough to get it onto his stomach to hold a dish for eating, but sometimes needs help to do even that and he's having a hard time wiggling his left toes. By the end of the day he could move his foot just a tiny bit, but it moved!
Physical therapy early this afternoon went fairly well (I wasn't there for the morning one, but I hear there was improvement from then to this afternoon). They got him up and had him walk to the cabinets on the wall by his bed (maybe 7 feet away) and back again. He did that with a just a little bit of help getting his left leg to move into place with each step, and then he went most of the way a second time and then back and then into to bed. He was glad for the change - to be able to get out of bed and moving again. I think he's already tired of being in a bed all day. Especially since he spent his entire childhood living and working on a farm. Moving and being able to do stuff is one of the things he has always taken for granted. In fact, one of our jokes throughout our marriage has been that his talent is carrying stuff. Well, carrying stuff and getting spiders and other icky bugs. (He has many talents, but since I don't really enjoy carrying stuff - or getting spiders - he LOVES to do those things for me so I don't have to, we have always joked about that.)
The best news of the day: he can smile again! The muscles on his face are working enough that he can do a fairly good smile! This afternoon after we both took a bit of a nap (and apparently Katie snuck in a took a picture of us - holding hands with my head on a folded up blanket on his bedside tray and him in bed - sneaky Katie!) Mark out of nowhere just up and gave me the biggest smile I have seen from him in days! It was so cute and awesome that I just giggled and laughed at how happy he looked!
His speech is still a bit slow. He almost sounds as if he just woke up, a bit groggy and tired. I asked him if it was just his body that was slow, or if his brain was also a bit slow. He said both were slow, but that his body was slower than his brain. I might have to wait for a few more days to start delving into the philosophical conversations we used to have. I guess it's a good thing that I know how to be patient, and I know it's worth the wait - even if it never comes in this life, it will have been worth the wait.
For dinner he asked to sit up. Not raise the bed to a sitting position, but put his legs off the side of the bed and eat as if he was sitting at a table. We had to unhook a few things and it took a bit of help from the nurses to get him to a sitting position, but once he was there he held himself up really well. He has pretty good trunk control (at least that's what I heard the nurses call it), it is just moving those left extremities into position that takes help from other people.
He's had a good appetite. He ordered eggs and french toast for breakfast, roast and mashed potatoes for dinner, pasta and a roll for lunch. There was also fruit and a dessert to go with each meal. He has eaten almost everything on the tray - he does try to give me some of his food, but I am well taken care of in the food department so I only snitch the stuff he won't eat (cantaloupe and honeydew and one slice of his roast) and I make him share his dessert - who can pass up sugar?. He has also gone through a lot of apple juice.
Mark is in good spirits, even though he dislikes the idea that he needs help doing things. I have a feeling that this can end up being both a good thing and a bad thing. He's already trying to do things he doesn't really have the strength for, which should be good practice and motivation to get better. At the moment it's not a problem because he's still pretty much stuck in bed and can do little to hurt himself there, but I have a feeling there will come a time when the things he can't do, but tries to do anyway, will get him into trouble. I expect that, for the most part, this independent streak will be a good thing far more often than it will be a bad thing, so I'm not going to try stop him unless it becomes a problem.
The kids got to visit with their Daddy for the first time post surgery! We tried to hide all of the wires coming out him so their first impression wasn't of him with all sorts of wires everywhere. For a while we were wondering if we should expose them to what their dad was going through, but in the end we decided that they would find out at some point (how could they not?), and to hide this from them would be of no benefit. We have always tried to explain everything to our kids - even (especially?) the harder facts of life. Of course we try to do it at their level ("Daddy had a cell in his brain that decided it wanted to do something silly and grow differently than how it was supposed to, and it got too big. The doctors thought it needed to get out of there, so they made a pretty cool looking cut in Daddy's head and used something like a spoon and scooped it out. Then they sewed him back together again! How awesome is that? Isn't it pretty weird that they sewed Daddy's head? He's going to have an awesome looking scar! And we'll need to be gentle with Daddy for a while until he feels better. No more 'tackle daddy' games for a little bit.") So, they came to visit in the evening. We had them come in one or two at a time - just so we could focus on what the kids needed to feel comfortable. As the kids get used to what's going on we'll probably start bringing them all in at a once, but we felt that for the first visit they needed more individualized attention. Shelly took a minute or so to warm up to seeing her Daddy so unlike her normal Daddy. She asked a few questions about what all the numbers on the computer screen meant and was fine, she then spent a little bit of time talking to Mark and a lot of time listening to my explanations as I talked to Jason. He took a bit longer. Jason wouldn't hold Mark's hand at first (not sure that he ever actually did - we didn't push it in the beginning and I forgot to pay attention later - he did give him a hug and kiss goodbye!). He sat on my lap and asked a lot of questions - mostly about the numbers on the screen. There wasn't a number he didn't want explained (and I don't know what they all mean, so I got to make a few guesses myself). He did eventually get to the point where he would wander around the room to find more numbers that needed explaining. He never really did get past saying 'hi Dad' to Mark.
Emily and Annie came in next. Apparently there was a huge crowd of people in the waiting room, so our time with the two little ones was short. Mark and I both got to give them a hug and kiss and say a few words, but then they left to make time for everyone to have a chance to come in before Mark got totally worn out. I think we'll plan the kids visits for a bit earlier in the day next time, so we have more time without all the extra people waiting and so Mark isn't quite as tired.
All in all, life is still good. I do miss the 'old' Mark at times, but I am grateful for what I have. What I have is awesome! I have lots (TONS) of love and support. I have awesome kids and a caring husband. I have amazing family members who have dropped almost everything to be here for me. I have more amazing family who are doing what they can to help give the support we need. I have friends and family too far away to much more than pray, text and e-mail, but they do that well and knowing they are out there is incredibly comforting! I have food just magically appear around meal times. I have the blessing of modern medicine and good doctors who know what they're doing. Mark has had amazing nurses and staff at the hospital. Yup, even (especially?) in the worst of times, there is still a lot to see of the best there is out there!
P.S. My sister informs me that there are typos in some of these recent posts (and I read a tiny bit over her shoulder this afternoon and cringed at some of the poor sentence structure). Please forgive me. Most of these have been largely typed up at some obscene hour of the morning (while Mark is asleep and I can let his hand go for a bit to type). I spent a while trying to find some of them, but finally decided that sleep was more important.
But getting sleep has had a few negative side effects as well. For one, I stayed home to visit with the kids while they were getting ready for school (that was actually a good thing - I think the kids needed a bit of time with their mom) and because of that I missed being there while his doctors were doing their rounds and the first round of physical therapy, so any info I have from that is second hand. Also, with more sleep and time to think, I've been able to actually process some of this, and I haven't been quite as able to keep myself together as I could before. I was pretty good at being a complete non-thinking zombie and still putting on and keeping on a cheerful(ish at times) face for Mark. Once my level of functioning increased, I have had a bit more of a roller-coaster experience. I have much higher highs, and am able to find actual enjoyment in some of this new and different experience, but I still hit the zombie-like phase. The problem is that I can tell the difference now, and some of the reality of what is going on is sneaking it's way into the my thoughts and keeping a cheerful face on is harder in those moments. I have tried to keep under control so Mark doesn't worry any more than he already is - recovering from major brain surgery is enough of a chore without having to also worry about me and how I'm doing - but I haven't always succeeded. I have always managed to get back under control fairly quickly though (at least when he's watching me).
Mark really is doing well for what he's been through. Pretty much all of the visitors have told him that. I think he's catching on though. Tonight when he heard some family say that to him, his response was 'I'm going to take that to mean that I'm actually looking pretty rough, but that I have a reason too.' I guess that pretty much sums it all up.
His left side is still really weak. A few hours after surgery he was able to lift his left arm above his head and slowly hold up two fingers. He could hold his left leg up. He was even able to use his left leg rather well as he walked to the toilet (a good 20 feet). I think that walk, and then a tiny bit of a wait to get back to bed took a bit of a toll on him (that and the swelling in his brain has had time to increase a bit now). He decided to do all of this at shift change. The nurse was more than awesome, but as it becoming apparent that Mark was going to be a while still on the toilet, the nurse asked me if it was ok if he did a few last minute shift change stuff while I stayed nearby. We only waited about 5 minutes, but Mark was got weaker and needed much more help getting back to bed than he did to get to the toilet. Today he can move his left arm up just enough to get it onto his stomach to hold a dish for eating, but sometimes needs help to do even that and he's having a hard time wiggling his left toes. By the end of the day he could move his foot just a tiny bit, but it moved!
Physical therapy early this afternoon went fairly well (I wasn't there for the morning one, but I hear there was improvement from then to this afternoon). They got him up and had him walk to the cabinets on the wall by his bed (maybe 7 feet away) and back again. He did that with a just a little bit of help getting his left leg to move into place with each step, and then he went most of the way a second time and then back and then into to bed. He was glad for the change - to be able to get out of bed and moving again. I think he's already tired of being in a bed all day. Especially since he spent his entire childhood living and working on a farm. Moving and being able to do stuff is one of the things he has always taken for granted. In fact, one of our jokes throughout our marriage has been that his talent is carrying stuff. Well, carrying stuff and getting spiders and other icky bugs. (He has many talents, but since I don't really enjoy carrying stuff - or getting spiders - he LOVES to do those things for me so I don't have to, we have always joked about that.)
The best news of the day: he can smile again! The muscles on his face are working enough that he can do a fairly good smile! This afternoon after we both took a bit of a nap (and apparently Katie snuck in a took a picture of us - holding hands with my head on a folded up blanket on his bedside tray and him in bed - sneaky Katie!) Mark out of nowhere just up and gave me the biggest smile I have seen from him in days! It was so cute and awesome that I just giggled and laughed at how happy he looked!
His speech is still a bit slow. He almost sounds as if he just woke up, a bit groggy and tired. I asked him if it was just his body that was slow, or if his brain was also a bit slow. He said both were slow, but that his body was slower than his brain. I might have to wait for a few more days to start delving into the philosophical conversations we used to have. I guess it's a good thing that I know how to be patient, and I know it's worth the wait - even if it never comes in this life, it will have been worth the wait.
For dinner he asked to sit up. Not raise the bed to a sitting position, but put his legs off the side of the bed and eat as if he was sitting at a table. We had to unhook a few things and it took a bit of help from the nurses to get him to a sitting position, but once he was there he held himself up really well. He has pretty good trunk control (at least that's what I heard the nurses call it), it is just moving those left extremities into position that takes help from other people.
He's had a good appetite. He ordered eggs and french toast for breakfast, roast and mashed potatoes for dinner, pasta and a roll for lunch. There was also fruit and a dessert to go with each meal. He has eaten almost everything on the tray - he does try to give me some of his food, but I am well taken care of in the food department so I only snitch the stuff he won't eat (cantaloupe and honeydew and one slice of his roast) and I make him share his dessert - who can pass up sugar?. He has also gone through a lot of apple juice.
Mark is in good spirits, even though he dislikes the idea that he needs help doing things. I have a feeling that this can end up being both a good thing and a bad thing. He's already trying to do things he doesn't really have the strength for, which should be good practice and motivation to get better. At the moment it's not a problem because he's still pretty much stuck in bed and can do little to hurt himself there, but I have a feeling there will come a time when the things he can't do, but tries to do anyway, will get him into trouble. I expect that, for the most part, this independent streak will be a good thing far more often than it will be a bad thing, so I'm not going to try stop him unless it becomes a problem.
The kids got to visit with their Daddy for the first time post surgery! We tried to hide all of the wires coming out him so their first impression wasn't of him with all sorts of wires everywhere. For a while we were wondering if we should expose them to what their dad was going through, but in the end we decided that they would find out at some point (how could they not?), and to hide this from them would be of no benefit. We have always tried to explain everything to our kids - even (especially?) the harder facts of life. Of course we try to do it at their level ("Daddy had a cell in his brain that decided it wanted to do something silly and grow differently than how it was supposed to, and it got too big. The doctors thought it needed to get out of there, so they made a pretty cool looking cut in Daddy's head and used something like a spoon and scooped it out. Then they sewed him back together again! How awesome is that? Isn't it pretty weird that they sewed Daddy's head? He's going to have an awesome looking scar! And we'll need to be gentle with Daddy for a while until he feels better. No more 'tackle daddy' games for a little bit.") So, they came to visit in the evening. We had them come in one or two at a time - just so we could focus on what the kids needed to feel comfortable. As the kids get used to what's going on we'll probably start bringing them all in at a once, but we felt that for the first visit they needed more individualized attention. Shelly took a minute or so to warm up to seeing her Daddy so unlike her normal Daddy. She asked a few questions about what all the numbers on the computer screen meant and was fine, she then spent a little bit of time talking to Mark and a lot of time listening to my explanations as I talked to Jason. He took a bit longer. Jason wouldn't hold Mark's hand at first (not sure that he ever actually did - we didn't push it in the beginning and I forgot to pay attention later - he did give him a hug and kiss goodbye!). He sat on my lap and asked a lot of questions - mostly about the numbers on the screen. There wasn't a number he didn't want explained (and I don't know what they all mean, so I got to make a few guesses myself). He did eventually get to the point where he would wander around the room to find more numbers that needed explaining. He never really did get past saying 'hi Dad' to Mark.
Emily and Annie came in next. Apparently there was a huge crowd of people in the waiting room, so our time with the two little ones was short. Mark and I both got to give them a hug and kiss and say a few words, but then they left to make time for everyone to have a chance to come in before Mark got totally worn out. I think we'll plan the kids visits for a bit earlier in the day next time, so we have more time without all the extra people waiting and so Mark isn't quite as tired.
All in all, life is still good. I do miss the 'old' Mark at times, but I am grateful for what I have. What I have is awesome! I have lots (TONS) of love and support. I have awesome kids and a caring husband. I have amazing family members who have dropped almost everything to be here for me. I have more amazing family who are doing what they can to help give the support we need. I have friends and family too far away to much more than pray, text and e-mail, but they do that well and knowing they are out there is incredibly comforting! I have food just magically appear around meal times. I have the blessing of modern medicine and good doctors who know what they're doing. Mark has had amazing nurses and staff at the hospital. Yup, even (especially?) in the worst of times, there is still a lot to see of the best there is out there!
P.S. My sister informs me that there are typos in some of these recent posts (and I read a tiny bit over her shoulder this afternoon and cringed at some of the poor sentence structure). Please forgive me. Most of these have been largely typed up at some obscene hour of the morning (while Mark is asleep and I can let his hand go for a bit to type). I spent a while trying to find some of them, but finally decided that sleep was more important.
Wednesday, May 1, 2013
Update - Post Surgery
Here is a copy of an update that my parents sent out via e-mail. I'll be able to do more when I've had some sleep and time to think/process everything.
Shelly, Mark's oldest daughter, age 7, was given a brief explanation of why her daddy was in the hospital. In her prayer last night she said, "Please bless Daddy not to be scared and please bless the doctors not to mess up too badly." Her prayer was answered, but the prognosis is still discouraging.
Mark's left side is somewhat affected because the doctor had to get close to something that affects that side during the operation. When the doctor visited him in his room, after surgery, Mark was able to lift his left arm, put up 2 fingers and somewhat move his left leg - all great signs the doctor said. Mark was even able to walk to the bathroom today - they don't see patients do that on the first day in the ICU very often.
Mark is awake, having drugs for the pain, talking, drinking water and apple juice, remembers the Boston bomber's last name and can easily name his kids!!! He even cracks jokes. When told of the doctor's first look, Mark said, "Well, I'm alive today!" to which Rachel responded, "And you'll be alive tomorrow!" I guess that's all we can do, take things one day at a time and be grateful for each one.
There has been LOTS of support from both sides of the family. With Mark in ICU, and well watched over, Rachel is going to go home tonight and get some real sleep - she has only slept 5 hours in the last 48, all in the hospital chair.
Mark will be in ICU for 2-3 days, depending on how he is able to move, walk, and feed himself, then a regular room for 2-3 more days.
Right now, I'm fairly emotionally numb to everything. I consider it a blessing because it allows me to still be able to function (something I'm not sure I could do if I actually sat down and thought about any of this), and I am more able to set myself aside and be who Mark needs me to be right now. I think the hardest part for me at the moment is trying to figure out the balance between who Mark needs me to be and what my kids need me to be, all while still trying to remember what I need for myself. It's quite a balancing act :) I've been pretty much surrounded by family since this all started. Except for overnight, I think I've been alone with Mark for only a few minutes at a time. While we treasure our alone time, this has been mostly a blessing. Having people around keeps me from having time to imagine anything but what is going 'right now.' It's has been a bit hard too, Mark and I miss our time to talk - especially when we was better able too before (his throat is a bit sore post surgery, and he's been relying on the very little sign language he knows to help him not have to talk as much) - but on the whole, family is a very good thing! I would much rather have them here than not.
Hopefully in the next few days as Mark continues to recover more and we learn more about what all this means and how to proceed, life will calm down a bit. I'm fairly confident that he will recover pretty much fully from this round. To me the biggest question is how long will the recovery last, and what happens if/when this comes back?
Shelly, Mark's oldest daughter, age 7, was given a brief explanation of why her daddy was in the hospital. In her prayer last night she said, "Please bless Daddy not to be scared and please bless the doctors not to mess up too badly." Her prayer was answered, but the prognosis is still discouraging.
Mark was in surgery for about 4 hours. They got most of the cancer, but from the look of it they think he will need radiation and chemo somewhat quickly. Looks don't always tell an accurate story, so we have to wait for the biopsy results, but that first look was not encouraging.
Mark is awake, having drugs for the pain, talking, drinking water and apple juice, remembers the Boston bomber's last name and can easily name his kids!!! He even cracks jokes. When told of the doctor's first look, Mark said, "Well, I'm alive today!" to which Rachel responded, "And you'll be alive tomorrow!" I guess that's all we can do, take things one day at a time and be grateful for each one.
There has been LOTS of support from both sides of the family. With Mark in ICU, and well watched over, Rachel is going to go home tonight and get some real sleep - she has only slept 5 hours in the last 48, all in the hospital chair.
Mark will be in ICU for 2-3 days, depending on how he is able to move, walk, and feed himself, then a regular room for 2-3 more days.
Robert & Debbie
Right now, I'm fairly emotionally numb to everything. I consider it a blessing because it allows me to still be able to function (something I'm not sure I could do if I actually sat down and thought about any of this), and I am more able to set myself aside and be who Mark needs me to be right now. I think the hardest part for me at the moment is trying to figure out the balance between who Mark needs me to be and what my kids need me to be, all while still trying to remember what I need for myself. It's quite a balancing act :) I've been pretty much surrounded by family since this all started. Except for overnight, I think I've been alone with Mark for only a few minutes at a time. While we treasure our alone time, this has been mostly a blessing. Having people around keeps me from having time to imagine anything but what is going 'right now.' It's has been a bit hard too, Mark and I miss our time to talk - especially when we was better able too before (his throat is a bit sore post surgery, and he's been relying on the very little sign language he knows to help him not have to talk as much) - but on the whole, family is a very good thing! I would much rather have them here than not.
Hopefully in the next few days as Mark continues to recover more and we learn more about what all this means and how to proceed, life will calm down a bit. I'm fairly confident that he will recover pretty much fully from this round. To me the biggest question is how long will the recovery last, and what happens if/when this comes back?
Sappy Stuff
This afternoon I was typing a few e-mails trying to let people know what was going on. While doing that I heard that Cindy had shown up out of the blue! (at least it was completely unexpected to me - I'm sure I'm going to get some of these details wrong, but I hope I at least get the over-all picture close enough) She teaches at SUU, this week is finals week, and in all the years she's been teaching there she has never given a scan-tron final. For some reason a few weeks ago, she wrote up a scan-tron final and had her assistant print it up and make all the arrangements. She was supposed to read a few names at graduation, but she found someone else to do that for her and she showed up at our house! I'm not entirely sure what prompted her to change the way she did her final this year, but I have a pretty good guess :)
Honestly, I have been overly humbled to watch as all sorts of pieces from a totally random collection of 'pies' all fit together to make things happen these last two days that I never could have imagined happening. I remember reading my cousin Laurie's blog (razzzberries.blogspot.com) about this same sort of thing, and wondering what that would feel like. I had never had anything remotely close to an experience like the ones she seemed to describe almost daily, but for the first time I think I am starting to get it.
I have vivid memories of driving down the road with Mark in the car. He's totally out of it - no clue what's going on, his parents were out of town, my phone was dying and all I could think was 'now what? I have no one left to call, I am going to have to face this alone - at least for a little while, and maybe for a long while.' It was a crushing thought to feel so totally alone. Thankfully, that didn't last too long. I wasn't given time to dwell on it - I had to focus on driving safely and getting us to the hospital alive and on making sure Mark was ok.
Then came the first call.
Then the second.
Then back-up arrived. Julibeth has been awesome through this. She was my lifesaver in so many ways on Monday. I'm not sure I'll ever be able to express how much having her there meant to me. She brought me stuff I hadn't even thought about needing, she called everyone so I didn't have to, arranged for Mark to have a blessing, thought of things I wouldn't have considered and overall was basically a perfect person to have there during those early moments.
It wasn't long before I had heard from people I never expected to hear from, and was offered help in more ways and from more people than was possible to accept. Mark is on the prayer roll of many temples (one of my friends in FL even offered to start calling all the temples she could find online - and then I found out that some of his cousins had been doing that exact thing! He's could easily be on a few of them several times over). Much of his family have been fasting for him today, and many, many more than that have been praying for him.
We have had a shocking number of visitors (the nursing staff even commented at how many people we had in his room this afternoon/evening - maybe they'll give us a bigger room for the second half of his stay... :) ). Family and friends whom I haven't seen in a while, some I've seen just this month, some just this week. It has been awesome to witness the outpouring of support.
For the first while of all this going on, I was completely unable to process what was happening in any kind of a normal way. Apparently when most people heard 'growth in the brain' their first reaction was 'that's not good'. Mine was 'ok... what does that mean? what do we do next? what am I dealing with?' I think some of the beginning reactions were due to shock a little bit - although my complete inability to grasp that what was going on could even be a bad thing makes me wonder if it was shock or denial or something else all together (it is possible shock from the stroke symptoms had kicked in already). I wasn't shocked by the news. The news didn't mean anything to me. Literally, nothing. It was as if the doctors were telling me that he had a cold and needed to take some decongestants before going to bed - both pieces of news would have had the same effect on me at that point. (well, one would have prompted me to take him home, and this one had me following an ambulance through town to meet him at another hospital... but mentally both were equally good or bad at that point).
I'm sure some people are watching me through this and are shocked that I'm not reacting more. I've been telling people I'm still in a bit of shock because otherwise they look at me funny, but I'm pretty sure that's not true anymore (it certainly was at first, but I think that has largely worn off). I am actually making an effort to not think about things that aren't right in front of me. Speculating about some possible future (any kind of future at all - good or bad) has been something I have tried not to allow myself to think about. Yet. I am dealing with the here and now, and that is about as much mental/emotional energy as I have. I will deal with the future either when the future becomes the present or when the present doesn't take up so much energy and I have some to spare to give to the future again. Giving over much needed energy to something I have no control over, and can't really do anything to change, only robs the present of the energy I need now. Once this settles down, I'll probably sit down and have a super good cry (instead of the small bursts that I'm getting now whenever I can't stop the future from sneaking into my thoughts). But by then, I expect that the future will be clearer and there will be less uncertainty to add to my list of things to cry about. :)
The Next Day (aka Matt's Birthday) - Mostly a Waiting Game and Lots of Technical Details...
We got to talk to two doctors this morning, both neurosurgeons. They said basically the same thing (shocking, I know) but each gave slightly different details about the growth and what surgery would look like. Rather than try to keep track of who said what, I'll summarize (and add in a few details that the assistant came back later and filled us in on - she also let us ask a million and three questions, so we got lots more info from her about possible outcomes/further treatments and potential successes/failures of surgery)
So, it's a growth (I think they called it a tumor - not quite sure about that). It's about the size of a small fist - more my sized fist than Mark's - and it's about as center in the brain as you can get. It started near/on the thalamus and grew up from there into the spinal ventricles. There are a few different kinds it can be, but they won't know which kind until they take it out and biopsy it. It can either be a fast or slow growing mass and it can either be benign or aggressive. Based on how big it is and the fact that he hasn't had any symptoms until very recently they're thinking it grew slowly, over many years. Apparently the brain doesn't much like rapid change and if it had grown quickly, he should have had more symptoms before now. I like the sound of slow growth (I'm not sure I should, but when the doctors talked about it, it sounded like it was good thing, so therefore I like it).
Depending on how it's growing lower down in his brain - where it's right on the thalamus - will determine how the rest of the plan will work. If there is a definitive difference between where the tumor ends and the brain begins, they'll take it all out and recovery should be fairly easy (again, depending on wether it's a fast or slow growing mass and wether it comes back). If the mass is spreading 'tentacles' into the thalamus then they will get what they can and once they have to start guessing what's tumor and what's brain, they'll stop. Apparently the thalamus is a 'collection point' for a lot of what the brain does, and they don't like to mess with that - it can cause all sorts of problems to start poking around in that part of the brain. If they have to leave some in, then depending on what type of growth pattern it has, they would do either radiation or chemo beginning 2-4 weeks out to get the rest of it (they wait to let the incision heal - faster growing ones start sooner, slower growing ones get to recover longer). Radiation would be about 4 weeks of treatment Monday thru Friday for about half an hour a day (except the first day when they get all the settings and stuff set up). Radiation to the brain tends to have few side effects except for appetite (the assistant who gave us all this info wasn't really familiar with all those details because she's more involved with the surgery part and not so much the follow up part, so she knows the 'how's but not so much of the 'what happens then's of that part). Chemo is incredibly targeted and is just a pill that he would take. It wouldn't even cause hair loss (although I don't think he's too worried about that part :) ).
Again - none of what happens next will be known until after the surgery. Any/all/none of these could be an option - or something all together different. It all depends on how much they get out, and what kind of growth it is and how he reacts to the surgery...
One thing is known for certain: Scans. Lots of them. Pretty much forever more. They'll scan his brain again at 3 months, 6 months, 9 months (that might have been 12 months) and then yearly after that pretty much forever. She did say that if he goes for 15 or so years with out further growths they might give him a break on the scans - like he might be able to take a year off... :)
The assistant doesn't really like to call brain masses cancer, because of how typical cancer acts. Typical cancer when it metastasizes, will spread to other parts of the body - kidneys, lungs, lymph nodes, brain, etc. Masses that start in the brain don't really spread past the blood brain barrier. Tumors in the brain can be 'aggressive' but they stay in the brain. The only reason this is relevant is because it means that unless there is good reason to look for cancer elsewhere (symptoms or lab work), they're not even going to look for it. So, we can pretty much rest assured that what we've seen so far is all there is to see on that front.
Once surgery is done, he'll go to ICU for the first day or two - standard procedure for cranial operations - and do a bit of recovery there. Once he's well enough they'll move him back to a regular room where he'll finish out his stay. I think we're expecting about a week (probably a day or so less) of a stay until he's ready to come home - again, depending on how surgery goes. There is a chance that he could end up needing some kind of rehab, but from what I've gathered it's not a super likely chance, so I'm going with him not needing that until they tell me otherwise.
The assistant did mention that for the first while - at least a month - patients are often really tired and it can take up to 6 months for what they consider a complete recovery (not sure what all that entails, but probably a return to before surgery levels of energy at least - not sure if that means he'll be back to normal in 6 months or just done with as much recovering as can be expected in 6 months. Guess we'll find out :) )
For the surgery, they are going to cut a hole right on the top of his head and cut it fairly central from front to back (kind of like how you would part a girls hair to do pig tails). I don't know how big that incision will be, but that's where it will be. They will spread the two halves of the brain apart and they will have to cut about 1/3 of the corpus callosum (the part of the brain that connects the two halves) and then start digging out tumor.
They are taking him down a bit early - about 6:00 or so - to do some prep work for the surgery. They'll shave his head and put on some 'stickers' that faintly resemble squishy life savers (at least that's how it was described them to me - I'll have pictures tomorrow and if I can find a way to get them online I'll post them). They use these as markers and once they're on they will do a 'mini MRI' and use the info they gather from that as a sort of digital map of his brain. Once in the operating room they have some kind of gadget they use in conjunction with the markers to allow them to see the brain better and basically use them to help them see how and where they are working. I'm not super clear on all the specific technical details, but that's the picture I got from how they've explained it.
He is second on the list for surgery tomorrow (or really, I guess it's later this morning, since it's technically now 'tomorrow') so they're expecting to get him around 11 or so. Surgery can take anywhere from 2-4 hours (the surgeon said 2-3, the assistant said based on the location and size that 3-4 was more likely, we'll just wait and see what happens - not much I can do to chance any of that, so whatever happens we will have to be ok with).
Ok, technical boring part done. Today was actually pretty awesome - at least as awesome as it can be sitting in a hospital room waiting to find out what's about to happen to the rest of your life with no real way to speed up the waiting game. My mom flew into town and we got to see her for a bit before she went to relieve Doug who had been watching our kids for us. Doug has been awesome! He was in the middle of moving into a new apartment when all this started, and instead of ...unpacking, grocery shopping, showering, changing clothes, planning his next semester of school (that starts today!)... he stayed with our kids and put off all of that so we could be here. He and Nate got the kids in bed last night, then Doug spent the night at the house, got the kids off to school, dealt with Annie who would have nothing to do with him... You know you're loved when a college student with much better things to do would do all that for you, for nothing more than knowing that we needed help. So, Mom went to go take over so he could spend time doing some much needed - and much delayed - organizing of his life.
Cindy showed up, out of the blue! I had been worried about finding a way to have someone watch the kids so that Mom could be here at the hospital while Mark was in surgery. I had basically given up trying and was going to be grateful that she was willing to watch the kids for us and call that good. But Cindy showing up was an answer to prayers! She will watch the kids for us! And apparently Annie will actually interact with her, so that's a good thing... (Annie actually kept choosing Aunt Grandma over me when they came to visit this afternoon - I was trying to get a hug or kiss from her, but she kept walking past me and straight to Cindy. It might have had something to do with the Oreo's she was holding, but I doubt it...)
We had all kinds of visitors here today. Cousins we both have and haven't seen in a while, friends we know and love but weren't expecting them to take time out of their day to come by, church members just checking in to see if we needed anything. This evening was a bit crazy with the room almost to overflowing with family and friends. We took advantage of the men in the room and had blessings all around - Mark, me, his parents and sister. It's amazing to watch men using their priesthood to help others. We were glad everyone came, and glad everyone stayed, but it was also nice to have a quite evening to ourselves for a bit - possibly our last 'normal' one for a while.
Random coincidence! I got a call from my visiting teacher checking in on us to see how we were doing. It came up in conversation that her mother also had recently had brain surgery and needed a bit of follow up due to some fluid build up. I had heard a story very similar to that when the doctor was talking about other surgeries he had done with growths in a similar spot and size to Mark's. Turns out the woman the doctor was talking about is the same woman who is also my visiting teacher's mother. And she's having surgery the same day and the same hospital and with the same doctors as Mark. We figured out that my visiting teacher's mother is the one who is going into surgery before Mark. She sure has her plate full of brain surgeries this week...
So, that's about all that's been going on here. Learning what's happening tomorrow and getting visits from lots of people. Not an overly busy day in terms of new things happening - I'm going to call that a good thing at this point.
Further updates probably won't happen until after surgery and we've had a chance to chat with the surgeon to see how things went - maybe even talk to Mark and see how he's doing. I'm thinking sometime mid to late afternoon... If there's anything urgent I'll send out an e-mail update (or more likely, have Mom do it), otherwise 'no news is good news'.
So, it's a growth (I think they called it a tumor - not quite sure about that). It's about the size of a small fist - more my sized fist than Mark's - and it's about as center in the brain as you can get. It started near/on the thalamus and grew up from there into the spinal ventricles. There are a few different kinds it can be, but they won't know which kind until they take it out and biopsy it. It can either be a fast or slow growing mass and it can either be benign or aggressive. Based on how big it is and the fact that he hasn't had any symptoms until very recently they're thinking it grew slowly, over many years. Apparently the brain doesn't much like rapid change and if it had grown quickly, he should have had more symptoms before now. I like the sound of slow growth (I'm not sure I should, but when the doctors talked about it, it sounded like it was good thing, so therefore I like it).
Depending on how it's growing lower down in his brain - where it's right on the thalamus - will determine how the rest of the plan will work. If there is a definitive difference between where the tumor ends and the brain begins, they'll take it all out and recovery should be fairly easy (again, depending on wether it's a fast or slow growing mass and wether it comes back). If the mass is spreading 'tentacles' into the thalamus then they will get what they can and once they have to start guessing what's tumor and what's brain, they'll stop. Apparently the thalamus is a 'collection point' for a lot of what the brain does, and they don't like to mess with that - it can cause all sorts of problems to start poking around in that part of the brain. If they have to leave some in, then depending on what type of growth pattern it has, they would do either radiation or chemo beginning 2-4 weeks out to get the rest of it (they wait to let the incision heal - faster growing ones start sooner, slower growing ones get to recover longer). Radiation would be about 4 weeks of treatment Monday thru Friday for about half an hour a day (except the first day when they get all the settings and stuff set up). Radiation to the brain tends to have few side effects except for appetite (the assistant who gave us all this info wasn't really familiar with all those details because she's more involved with the surgery part and not so much the follow up part, so she knows the 'how's but not so much of the 'what happens then's of that part). Chemo is incredibly targeted and is just a pill that he would take. It wouldn't even cause hair loss (although I don't think he's too worried about that part :) ).
Again - none of what happens next will be known until after the surgery. Any/all/none of these could be an option - or something all together different. It all depends on how much they get out, and what kind of growth it is and how he reacts to the surgery...
One thing is known for certain: Scans. Lots of them. Pretty much forever more. They'll scan his brain again at 3 months, 6 months, 9 months (that might have been 12 months) and then yearly after that pretty much forever. She did say that if he goes for 15 or so years with out further growths they might give him a break on the scans - like he might be able to take a year off... :)
The assistant doesn't really like to call brain masses cancer, because of how typical cancer acts. Typical cancer when it metastasizes, will spread to other parts of the body - kidneys, lungs, lymph nodes, brain, etc. Masses that start in the brain don't really spread past the blood brain barrier. Tumors in the brain can be 'aggressive' but they stay in the brain. The only reason this is relevant is because it means that unless there is good reason to look for cancer elsewhere (symptoms or lab work), they're not even going to look for it. So, we can pretty much rest assured that what we've seen so far is all there is to see on that front.
Once surgery is done, he'll go to ICU for the first day or two - standard procedure for cranial operations - and do a bit of recovery there. Once he's well enough they'll move him back to a regular room where he'll finish out his stay. I think we're expecting about a week (probably a day or so less) of a stay until he's ready to come home - again, depending on how surgery goes. There is a chance that he could end up needing some kind of rehab, but from what I've gathered it's not a super likely chance, so I'm going with him not needing that until they tell me otherwise.
The assistant did mention that for the first while - at least a month - patients are often really tired and it can take up to 6 months for what they consider a complete recovery (not sure what all that entails, but probably a return to before surgery levels of energy at least - not sure if that means he'll be back to normal in 6 months or just done with as much recovering as can be expected in 6 months. Guess we'll find out :) )
For the surgery, they are going to cut a hole right on the top of his head and cut it fairly central from front to back (kind of like how you would part a girls hair to do pig tails). I don't know how big that incision will be, but that's where it will be. They will spread the two halves of the brain apart and they will have to cut about 1/3 of the corpus callosum (the part of the brain that connects the two halves) and then start digging out tumor.
They are taking him down a bit early - about 6:00 or so - to do some prep work for the surgery. They'll shave his head and put on some 'stickers' that faintly resemble squishy life savers (at least that's how it was described them to me - I'll have pictures tomorrow and if I can find a way to get them online I'll post them). They use these as markers and once they're on they will do a 'mini MRI' and use the info they gather from that as a sort of digital map of his brain. Once in the operating room they have some kind of gadget they use in conjunction with the markers to allow them to see the brain better and basically use them to help them see how and where they are working. I'm not super clear on all the specific technical details, but that's the picture I got from how they've explained it.
He is second on the list for surgery tomorrow (or really, I guess it's later this morning, since it's technically now 'tomorrow') so they're expecting to get him around 11 or so. Surgery can take anywhere from 2-4 hours (the surgeon said 2-3, the assistant said based on the location and size that 3-4 was more likely, we'll just wait and see what happens - not much I can do to chance any of that, so whatever happens we will have to be ok with).
Ok, technical boring part done. Today was actually pretty awesome - at least as awesome as it can be sitting in a hospital room waiting to find out what's about to happen to the rest of your life with no real way to speed up the waiting game. My mom flew into town and we got to see her for a bit before she went to relieve Doug who had been watching our kids for us. Doug has been awesome! He was in the middle of moving into a new apartment when all this started, and instead of ...unpacking, grocery shopping, showering, changing clothes, planning his next semester of school (that starts today!)... he stayed with our kids and put off all of that so we could be here. He and Nate got the kids in bed last night, then Doug spent the night at the house, got the kids off to school, dealt with Annie who would have nothing to do with him... You know you're loved when a college student with much better things to do would do all that for you, for nothing more than knowing that we needed help. So, Mom went to go take over so he could spend time doing some much needed - and much delayed - organizing of his life.
Cindy showed up, out of the blue! I had been worried about finding a way to have someone watch the kids so that Mom could be here at the hospital while Mark was in surgery. I had basically given up trying and was going to be grateful that she was willing to watch the kids for us and call that good. But Cindy showing up was an answer to prayers! She will watch the kids for us! And apparently Annie will actually interact with her, so that's a good thing... (Annie actually kept choosing Aunt Grandma over me when they came to visit this afternoon - I was trying to get a hug or kiss from her, but she kept walking past me and straight to Cindy. It might have had something to do with the Oreo's she was holding, but I doubt it...)
We had all kinds of visitors here today. Cousins we both have and haven't seen in a while, friends we know and love but weren't expecting them to take time out of their day to come by, church members just checking in to see if we needed anything. This evening was a bit crazy with the room almost to overflowing with family and friends. We took advantage of the men in the room and had blessings all around - Mark, me, his parents and sister. It's amazing to watch men using their priesthood to help others. We were glad everyone came, and glad everyone stayed, but it was also nice to have a quite evening to ourselves for a bit - possibly our last 'normal' one for a while.
Random coincidence! I got a call from my visiting teacher checking in on us to see how we were doing. It came up in conversation that her mother also had recently had brain surgery and needed a bit of follow up due to some fluid build up. I had heard a story very similar to that when the doctor was talking about other surgeries he had done with growths in a similar spot and size to Mark's. Turns out the woman the doctor was talking about is the same woman who is also my visiting teacher's mother. And she's having surgery the same day and the same hospital and with the same doctors as Mark. We figured out that my visiting teacher's mother is the one who is going into surgery before Mark. She sure has her plate full of brain surgeries this week...
So, that's about all that's been going on here. Learning what's happening tomorrow and getting visits from lots of people. Not an overly busy day in terms of new things happening - I'm going to call that a good thing at this point.
Further updates probably won't happen until after surgery and we've had a chance to chat with the surgeon to see how things went - maybe even talk to Mark and see how he's doing. I'm thinking sometime mid to late afternoon... If there's anything urgent I'll send out an e-mail update (or more likely, have Mom do it), otherwise 'no news is good news'.
Tuesday, April 30, 2013
My Birthday - the short version
I had a fun birthday! I got lots of gifts I wasn't expecting - like spending the whole day with Mark in the hospital (at least we were together!) And well wishes and visits from people I know and love, but don't always see.
Yesterday afternoon - after my 16 week OB checkup (everything was fine there) I noticed Mark was acting and talking weird. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. So ... I drove him straight to the ER (Doug was there and about to leave, but awesomely volunteered to stay and watch the kids for me). The ER did all kinds of tests to check for a stroke - EKG, CT, Angiogram, Chest X-ray, I think - and came back with "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit distracted). He did say that the CT made it look like it wasn't the aggressive type of growth (that could change with further testing, but I'm taking that good news for now! :) )
We talked to a neurosurgeon, he scheduled an MRI - we've had that done and will get the results in the morning when he comes in. All he was really able to tell us without the MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. We'll know more in a few hours...
(I had this up on Facebook, but decided my in-laws might be scandalized by how much info I was sharing so publicly - so I took it down and decided to put it up here.)
Yesterday afternoon - after my 16 week OB checkup (everything was fine there) I noticed Mark was acting and talking weird. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. So ... I drove him straight to the ER (Doug was there and about to leave, but awesomely volunteered to stay and watch the kids for me). The ER did all kinds of tests to check for a stroke - EKG, CT, Angiogram, Chest X-ray, I think - and came back with "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit distracted). He did say that the CT made it look like it wasn't the aggressive type of growth (that could change with further testing, but I'm taking that good news for now! :) )
We talked to a neurosurgeon, he scheduled an MRI - we've had that done and will get the results in the morning when he comes in. All he was really able to tell us without the MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. We'll know more in a few hours...
(I had this up on Facebook, but decided my in-laws might be scandalized by how much info I was sharing so publicly - so I took it down and decided to put it up here.)
A Birthday I Probably Won't Forget!
I had a fun birthday! I got lots of gifts I wasn't expecting - like spending the whole day with Mark in the hospital (at least we were together!) And well wishes and visits from people I know and love, but don't always see.
Yesterday afternoon - after ordering a windshield for our van so it can pass inspection and get registered before the end of the month - yeah, tomorrow - and making an appointment for that afternoon for them to install it - and after my 16 week OB checkup (everything was fine there)... After all that:
I woke up from a nap and was about to head out to get the windshield installed (never did do that) and asked Mark what he had been up too. He told me he didn't know (how does he not know?! I was a bit put out - it's ok to not tell me, but this was a cheap out in my opinion). I was going to drop it, but I was a bit bugged at being blown off so easily, so I pushed a bit more. 'Were you standing, sitting, lying down, inside, outside, awake, asleep?' He still came back with 'I don't know.' I wish I could say that at this point I was concerned, but it wasn't until I noticed Mark was talking weird that I started really paying attention to him and how he was doing. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. I wondered if he had hit his head and checked his pupils for dilation issues - no indication there of anything obvious. I kept questioning him. I was a bit hesitant because I was sure I was over-reacting. I asked him the same questions over and over. He had to look at his watch to tell me the day. I asked him the year, and he'd check his watch - he never did answer that one for me though - not until much later. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. Doug was just finishing up moving from his temporary/weekend home in our basement to his new apartment and came back in the house for something. I asked him if he knew what had happened to Mark, hoping he knew of a head injury or something. He pointed to the couch - I knew where he was... Doug came in and talked to Mark for a bit and agreed with me that he was not normal. One of the friends who helped him move was the daughter of a nurse, so we called her mother and got her opinion - straight to the ER. Doug was on his way out - the car had even started driving away - but he volunteered to watch the kids for me. He was my hero of the afternoon! (truly!) I then had freedom to give full attention to Mark and know that I didn't need to worry about the kids too.
Once in the car - not even to the elementary school - Mark opened the car door and threw up. He kept hold of a bucket I scrounged up the rest of the way. On the way to the ER I called Mark's parents. They live close and I figured they could come be there with me and not be too emotional (so that I could be emotional). Turns out they were in south eastern Utah for a funeral. I decided I should focus on driving and left the rest of phone call making until I was in the ER with Mark. That, and my phone was almost dead and I was pretty sure I was going to want that to be useful later (Mark's phone was also almost dead - how does it always seem to work out that way?). And I was bit distracted by Mark himself - I had asked him how he was doing and he said he didn't feel good. He asked where we were going and I told him 'the hospital'. He said 'oh, I don't feel good. Where are we going?' I decided it wasn't worth it to me to have to answer that question more than the 4 times I already had, so I stopped asking how he was doing and he was so confused and not feeling well that he didn't ask again until we got out of the car to head into the ER.
The ER took him straight back - no official check in, no waiting - and gave him his own huge room, which quickly filled up with staff. They did all kinds of tests to check for a stroke - EKG, CT, Angiogram, and Chest X-ray, I think - I might not have been made aware of all the tests, or if I was made aware, I might have been distracted.
Julibeth showed up at some point in all of that (she actually called while I was walking into the hospital from the parking lot with Mark). It was good to have someone else there! And she brought a phone charger! She made all kinds of calls for me while we were there. We even called Mark's internship to let them know he wouldn't make it (it was an adventure trying to figure out how to call them - Mark had no memory of how to make that call, so we guessed based on the numbers in his phone). We couldn't get a live person so I left a message (apparently I called myself Mark's husband - yeah, a bit flustered was I). JB also arranged for someone from our old ward, who Mark had gown up knowing, to come give him a blessing. My mom volunteered to hop on a plane right that minute. I still didn't know what I was dealing with, so it seemed silly to me to have her hop on a plane just to find out it was no big deal. I told her to wait until I knew more about what was going on.
Mark's memory was still not ok. He could tell the doctor where he was (he had to look around first), but when he was asked all kinds of questions about day/month/year/president, he came up blank. He did get the president right a few minutes later... After they had run most of the tests they left us alone for a bit and we got to talk to him (in between many various and sundry calls). I kept asking him what month it was and he guessed June. For the year: 2012. We lived on Geneva, and no memory of where our kids go to school (he was good with the kids names by then, so I moved onto harder/more recent questions). He later guessed summer of 2012 - again. I gave up most of the last year as lost to him for the time being. He also realized he had missed a few months and since we were joking about how long it took Mr. Political to remember the President, he asked to be updated (at least in the political sphere). We told him Obama had been re-elected (he was surprised, as if he didn't know that), and then we mentioned the bombings in Boston. He then pretty quickly spit out the last names of the suspects. I wasn't sure how to take that. Our kids he struggles with, but an unpronounceable last name of some random people in the news recently - that he remembers... :) Have no fear, I duly gave him a hard time about that (he didn't quite get why he was being given a hard time - seeing as how he didn't remember forgetting, but he laughed along with it anyway).
The doctor came back with the test results: "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is fairly large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit out of it - I do know that his index finger and thumb did not meet, by more than an inch, but that's all I remember from that encounter). He did say that the CT made it look like it wasn't the aggressive type of growth (I'm keeping in mind that this could change with further testing, but I'm taking that good news for now! :) ). He did say it was growing at ... some unknown rate ... so it would likely need to come out or need some kind of treatment. They gave him some morphine for his headache and some zophran for his nausea.
The nurse offered me a box of tissues and said it was totally understandable that I should need them. I didn't get why. I think I was in shock. I still didn't really get what I was dealing with. (I still don't actually - I'm very grateful for that. I'm slowly realizing it's a big deal and will take a lot longer than an afternoon and a few pills to fix - if it even can be... but I am incredibly grateful that the realization is coming slowly and not all at once. I can handle slow. I've made a conscious effort to not think about things until I know what I need to think about - it's only mostly working). My mom called asking for an update, I was still in shock/denial/uncertainty/something and told her I still didn't know what we were dealing with or if it would be good for her to be here or not... She finally just told me she was coming. I might still be debating otherwise. I'm telling ya, the realization is coming slowly... Doug also told me he was willing to stay with the kids until Mom got here to help - it's awesome to actually see how blessed I actually am.
They then prepared us to transfer to Utah Valley (the nurse-mom from the phone, I don't know her name, had recommended Timp for our insurance, but apparently Utah Valley is better able to deal with what Mark has). They gave me a CD with what I assume are pictures of the scans he had - I'll look into that more later. Mark got to ride in an ambulance - not sure if he remembers any of it though. :) So we were in two ERs in one afternoon! Good times! They gave him more zophran for nausea and some steroids for the brain growth. While at Utah Valley he started to remember more. He eventually came to realize it was my birthday all on his own. I considered that a very good sign. He remembered the day (Monday), why the weekend was significant (Nate graduated and we had a half dozen house guests), all kinds of stuff! He also started asking what had happened. Apparently he still has no memory of how/why he we thought it necessary to bring him here. He remembers being here, and what's happened since ('I have a thing growing in my head'), but not the part where he was out of it. I've actually had to tell him the story more than once.
Mark's Aunt Emily came to be there with us. That was good. She works at the hospital and is well aware of how things work and who the doctors are. She was a great asset (and her son's school had been evacuated that morning from a bomb threat - she had an adventurous day even without being with us!). She stayed with us until Mark's parents were able to make it back from the funeral that had taken them out of town. At some point our bishop showed up in the ER. It was rather confusing, seeing as how I hadn't had time or even remembered to tell anyone in the ward what was going on. Turns out the family that JB had asked to give Mark a blessing was old college roommates and still good friends with a lady in our ward (the primary secretary) - who happens to be next door neighbors with my visiting teacher - who she happened to tell about it - and who had visited us just the night before. I got a phone call pretty quick (minutes after finding out about the growth), but also quickly forgot about it until the bishop showed up. I'm guessing that's how word got back to him. Not long after the bishop left, Mark got a phone call from the Elder's Quorum President (Mark had been unable to handle phone calls earlier so I had taken his phone from him in case someone called). They had chatted at church on Sunday and he wanted to let me know he was praying for us, and asked me to keep him updated and let him know if we needed anything.
We later talked to a neurosurgeon - after he finally got out of surgery (really, it didn't seem that long, but the clock kept saying it was later than I thought it was - all afternoon/evening - pretty sure from 2:00 to 9:00 was only an hour or two in my head). All he was really able to tell us without an MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. He ordered an MRI and admitted us to the hospital. Mark got moved upstairs (Aunt Nila was here by then) and settled into his new room. His parents showed up little bit later, along with Nate, Uncle Tony and Aunt Becky. Everyone stayed for a bit and we realized it was late, so all of the aunts and uncles went home. Nate, JB and Mark's parents stayed. Nate was awesome and offered to bring us some stuff from home. Yup, I'm surrounded by life savers who don't even know it.
We had thought the MRI was not going to happen until the morning, but they called in a tech and had it done just after 10:00 so the Doc could have the results when he came in. Mark's parents and Nate all stayed until Mark got back (JB had to go get Ethan and put him in bed). Mark has been sleeping since he got back (except when they wake him up to check on him). I have been sitting in this uncomfortable chair, with a sore throat, and, surprisingly, a thing or two on my mind, trying to sleep. It hasn't really worked. I think I got a combined hour, maybe two! :)
The doc should be here sometime soon (it's 6:45 now) and we'll know more then. I'm still hoping Mark will come home today and come back for a day or so of treatment sometime later and then all will be well and back to normal! (hey, a girl can dream, right?)
Yesterday afternoon - after ordering a windshield for our van so it can pass inspection and get registered before the end of the month - yeah, tomorrow - and making an appointment for that afternoon for them to install it - and after my 16 week OB checkup (everything was fine there)... After all that:
I woke up from a nap and was about to head out to get the windshield installed (never did do that) and asked Mark what he had been up too. He told me he didn't know (how does he not know?! I was a bit put out - it's ok to not tell me, but this was a cheap out in my opinion). I was going to drop it, but I was a bit bugged at being blown off so easily, so I pushed a bit more. 'Were you standing, sitting, lying down, inside, outside, awake, asleep?' He still came back with 'I don't know.' I wish I could say that at this point I was concerned, but it wasn't until I noticed Mark was talking weird that I started really paying attention to him and how he was doing. He speech sounded kind of like his tongue was swollen. Upon further questioning he couldn't remember much of anything recent - what he had done that day, who had stayed with us that weekend, what day/year it was. I wondered if he had hit his head and checked his pupils for dilation issues - no indication there of anything obvious. I kept questioning him. I was a bit hesitant because I was sure I was over-reacting. I asked him the same questions over and over. He had to look at his watch to tell me the day. I asked him the year, and he'd check his watch - he never did answer that one for me though - not until much later. It took him a full 2 minutes to come up with our kids' names, and when I pointed at Annie (the baby - for now) and asked him who she was, he just stared at her with a blank look. Doug was just finishing up moving from his temporary/weekend home in our basement to his new apartment and came back in the house for something. I asked him if he knew what had happened to Mark, hoping he knew of a head injury or something. He pointed to the couch - I knew where he was... Doug came in and talked to Mark for a bit and agreed with me that he was not normal. One of the friends who helped him move was the daughter of a nurse, so we called her mother and got her opinion - straight to the ER. Doug was on his way out - the car had even started driving away - but he volunteered to watch the kids for me. He was my hero of the afternoon! (truly!) I then had freedom to give full attention to Mark and know that I didn't need to worry about the kids too.
Once in the car - not even to the elementary school - Mark opened the car door and threw up. He kept hold of a bucket I scrounged up the rest of the way. On the way to the ER I called Mark's parents. They live close and I figured they could come be there with me and not be too emotional (so that I could be emotional). Turns out they were in south eastern Utah for a funeral. I decided I should focus on driving and left the rest of phone call making until I was in the ER with Mark. That, and my phone was almost dead and I was pretty sure I was going to want that to be useful later (Mark's phone was also almost dead - how does it always seem to work out that way?). And I was bit distracted by Mark himself - I had asked him how he was doing and he said he didn't feel good. He asked where we were going and I told him 'the hospital'. He said 'oh, I don't feel good. Where are we going?' I decided it wasn't worth it to me to have to answer that question more than the 4 times I already had, so I stopped asking how he was doing and he was so confused and not feeling well that he didn't ask again until we got out of the car to head into the ER.
The ER took him straight back - no official check in, no waiting - and gave him his own huge room, which quickly filled up with staff. They did all kinds of tests to check for a stroke - EKG, CT, Angiogram, and Chest X-ray, I think - I might not have been made aware of all the tests, or if I was made aware, I might have been distracted.
Julibeth showed up at some point in all of that (she actually called while I was walking into the hospital from the parking lot with Mark). It was good to have someone else there! And she brought a phone charger! She made all kinds of calls for me while we were there. We even called Mark's internship to let them know he wouldn't make it (it was an adventure trying to figure out how to call them - Mark had no memory of how to make that call, so we guessed based on the numbers in his phone). We couldn't get a live person so I left a message (apparently I called myself Mark's husband - yeah, a bit flustered was I). JB also arranged for someone from our old ward, who Mark had gown up knowing, to come give him a blessing. My mom volunteered to hop on a plane right that minute. I still didn't know what I was dealing with, so it seemed silly to me to have her hop on a plane just to find out it was no big deal. I told her to wait until I knew more about what was going on.
Mark's memory was still not ok. He could tell the doctor where he was (he had to look around first), but when he was asked all kinds of questions about day/month/year/president, he came up blank. He did get the president right a few minutes later... After they had run most of the tests they left us alone for a bit and we got to talk to him (in between many various and sundry calls). I kept asking him what month it was and he guessed June. For the year: 2012. We lived on Geneva, and no memory of where our kids go to school (he was good with the kids names by then, so I moved onto harder/more recent questions). He later guessed summer of 2012 - again. I gave up most of the last year as lost to him for the time being. He also realized he had missed a few months and since we were joking about how long it took Mr. Political to remember the President, he asked to be updated (at least in the political sphere). We told him Obama had been re-elected (he was surprised, as if he didn't know that), and then we mentioned the bombings in Boston. He then pretty quickly spit out the last names of the suspects. I wasn't sure how to take that. Our kids he struggles with, but an unpronounceable last name of some random people in the news recently - that he remembers... :) Have no fear, I duly gave him a hard time about that (he didn't quite get why he was being given a hard time - seeing as how he didn't remember forgetting, but he laughed along with it anyway).
The doctor came back with the test results: "It's not a brain bleed, but there is a growth and he needs it checked out before he can leave." The growth is fairly large, without any kind of decent explanation from anyone official, the ER doc made a circle with his hand about the size of the long way around a cutie orange (or maybe as big as a small apple - I confess, I might not have been paying as much attention to that as I could have been - I was a bit out of it - I do know that his index finger and thumb did not meet, by more than an inch, but that's all I remember from that encounter). He did say that the CT made it look like it wasn't the aggressive type of growth (I'm keeping in mind that this could change with further testing, but I'm taking that good news for now! :) ). He did say it was growing at ... some unknown rate ... so it would likely need to come out or need some kind of treatment. They gave him some morphine for his headache and some zophran for his nausea.
The nurse offered me a box of tissues and said it was totally understandable that I should need them. I didn't get why. I think I was in shock. I still didn't really get what I was dealing with. (I still don't actually - I'm very grateful for that. I'm slowly realizing it's a big deal and will take a lot longer than an afternoon and a few pills to fix - if it even can be... but I am incredibly grateful that the realization is coming slowly and not all at once. I can handle slow. I've made a conscious effort to not think about things until I know what I need to think about - it's only mostly working). My mom called asking for an update, I was still in shock/denial/uncertainty/something and told her I still didn't know what we were dealing with or if it would be good for her to be here or not... She finally just told me she was coming. I might still be debating otherwise. I'm telling ya, the realization is coming slowly... Doug also told me he was willing to stay with the kids until Mom got here to help - it's awesome to actually see how blessed I actually am.
They then prepared us to transfer to Utah Valley (the nurse-mom from the phone, I don't know her name, had recommended Timp for our insurance, but apparently Utah Valley is better able to deal with what Mark has). They gave me a CD with what I assume are pictures of the scans he had - I'll look into that more later. Mark got to ride in an ambulance - not sure if he remembers any of it though. :) So we were in two ERs in one afternoon! Good times! They gave him more zophran for nausea and some steroids for the brain growth. While at Utah Valley he started to remember more. He eventually came to realize it was my birthday all on his own. I considered that a very good sign. He remembered the day (Monday), why the weekend was significant (Nate graduated and we had a half dozen house guests), all kinds of stuff! He also started asking what had happened. Apparently he still has no memory of how/why he we thought it necessary to bring him here. He remembers being here, and what's happened since ('I have a thing growing in my head'), but not the part where he was out of it. I've actually had to tell him the story more than once.
Mark's Aunt Emily came to be there with us. That was good. She works at the hospital and is well aware of how things work and who the doctors are. She was a great asset (and her son's school had been evacuated that morning from a bomb threat - she had an adventurous day even without being with us!). She stayed with us until Mark's parents were able to make it back from the funeral that had taken them out of town. At some point our bishop showed up in the ER. It was rather confusing, seeing as how I hadn't had time or even remembered to tell anyone in the ward what was going on. Turns out the family that JB had asked to give Mark a blessing was old college roommates and still good friends with a lady in our ward (the primary secretary) - who happens to be next door neighbors with my visiting teacher - who she happened to tell about it - and who had visited us just the night before. I got a phone call pretty quick (minutes after finding out about the growth), but also quickly forgot about it until the bishop showed up. I'm guessing that's how word got back to him. Not long after the bishop left, Mark got a phone call from the Elder's Quorum President (Mark had been unable to handle phone calls earlier so I had taken his phone from him in case someone called). They had chatted at church on Sunday and he wanted to let me know he was praying for us, and asked me to keep him updated and let him know if we needed anything.
We later talked to a neurosurgeon - after he finally got out of surgery (really, it didn't seem that long, but the clock kept saying it was later than I thought it was - all afternoon/evening - pretty sure from 2:00 to 9:00 was only an hour or two in my head). All he was really able to tell us without an MRI was that on the small-medium-large scale, it's definitely larger. And it's on the right side of his brain and seems to be growing in the center of his brain and working it's way upward. He ordered an MRI and admitted us to the hospital. Mark got moved upstairs (Aunt Nila was here by then) and settled into his new room. His parents showed up little bit later, along with Nate, Uncle Tony and Aunt Becky. Everyone stayed for a bit and we realized it was late, so all of the aunts and uncles went home. Nate, JB and Mark's parents stayed. Nate was awesome and offered to bring us some stuff from home. Yup, I'm surrounded by life savers who don't even know it.
We had thought the MRI was not going to happen until the morning, but they called in a tech and had it done just after 10:00 so the Doc could have the results when he came in. Mark's parents and Nate all stayed until Mark got back (JB had to go get Ethan and put him in bed). Mark has been sleeping since he got back (except when they wake him up to check on him). I have been sitting in this uncomfortable chair, with a sore throat, and, surprisingly, a thing or two on my mind, trying to sleep. It hasn't really worked. I think I got a combined hour, maybe two! :)
The doc should be here sometime soon (it's 6:45 now) and we'll know more then. I'm still hoping Mark will come home today and come back for a day or so of treatment sometime later and then all will be well and back to normal! (hey, a girl can dream, right?)
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