Showing posts with label stroke victim. Show all posts
Showing posts with label stroke victim. Show all posts
Tuesday, September 27, 2011
Thursday, August 18, 2011
Made it through the long MRI
Checked in at 4:45 last night, she was in the machine by 5:15 and didn't emerge until around 8:30pm. Longest MRI she has been through yet. No hitches. They aren't looking for anything new - that was all on the CT scan - this is a fine grain that should pinpoint exact location from 3-D perspective of each tumor and it's precise measurements.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
Thursday, July 28, 2011
Pillow Talk - it ain't what it used to be...
We've kind of developed a pattern. Usually I get up pretty early in the morning - between 4:30 and 5:00a.m. I have coffee, take care of the dogs, read the news and then do a lot of thinking and some writing. Meagan is up anywhere between 6:00 and 7:30a.m. After she gets settled we usually talk - mostly about her disease and a lot about how its going, what is upcoming, the boys, then about her appointments she's scheduled (that's when I typically find out about where I need to take her - sometimes with more advance warning than others), and what she needs to do that day in terms of timing to get ready and who is coming and what boy's schedule is and what I am doing. Usually not many tears, unless we get into some rough territory. But the medications she had the night before have worn off and she is typically in pretty good form, feeling reasonably sharp and capable of handling the situation. When she finishes breakfast and takes her medications - around 9:00a.m., she starts noticing the mental sharpness change right away. The mood changes don't kick in until later.
She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.
Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.
That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.
She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.
Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.
That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.
Monday, July 25, 2011
Wheel Spinning
Yesterday afternoon was pretty frustrating for Meagan. She attempted to get into her studio and finish up arranging it, as well as tackling a few small projects. Unfortunately, her short term memory was shot yesterday, and what should have taken only an hour or so, ended up taking up the full afternoon. She simply could not remember even what she wanted to do within a five minute span. The good news is she got it done. But not without tears, frustration, and a lot of swearing.
It's hard to know what is driving this - it could be the effects of the craniotomy, the radiation, or the medications. It does seem to vary somewhat from day to day, which would lead me to think it's more the medications and how it ties to how tired she is or some other aspect of her body. But it could very well that the short term effects are becoming more long term than short term. There is no question some aspects of her cognitive capability are gone "forever"- such as her facility with numbers and dates. But the short term memory thing seems to be more "assertive" and whether it will resolve in time remains to be seen. She goes off one of the anti-seizure medications this week and we will see if that makes a difference.
It definitely causes her distress, given how sharp she used to be. She asked me several times yesterday if she was losing her mind. I've tried to reassure her that it is likely short-term and temporary, and to just relax about it. There is always the worry that it is not an aspect of her prior brain injuries, but indicative of developing brain tumor activity. I'd rather not go there speculatively, we will know that by the 3rd of August.
She is using all the tactics one should to keep her on track - such as lists and calendar management and a white board for planning. My reassurances though ring a little hollow to her, and I suppose it is just a condition she has to get confortable with as best she can. It doesn't affect her ability to interact with people and whenever she can't recall something in conversation she is able to make light of it. But in private when she is on point and trying to get something done, it's a problem she recognizes, without a known resolution. And there is nothing much that can be done about it other than acceptance.
It's hard to know what is driving this - it could be the effects of the craniotomy, the radiation, or the medications. It does seem to vary somewhat from day to day, which would lead me to think it's more the medications and how it ties to how tired she is or some other aspect of her body. But it could very well that the short term effects are becoming more long term than short term. There is no question some aspects of her cognitive capability are gone "forever"- such as her facility with numbers and dates. But the short term memory thing seems to be more "assertive" and whether it will resolve in time remains to be seen. She goes off one of the anti-seizure medications this week and we will see if that makes a difference.
It definitely causes her distress, given how sharp she used to be. She asked me several times yesterday if she was losing her mind. I've tried to reassure her that it is likely short-term and temporary, and to just relax about it. There is always the worry that it is not an aspect of her prior brain injuries, but indicative of developing brain tumor activity. I'd rather not go there speculatively, we will know that by the 3rd of August.
She is using all the tactics one should to keep her on track - such as lists and calendar management and a white board for planning. My reassurances though ring a little hollow to her, and I suppose it is just a condition she has to get confortable with as best she can. It doesn't affect her ability to interact with people and whenever she can't recall something in conversation she is able to make light of it. But in private when she is on point and trying to get something done, it's a problem she recognizes, without a known resolution. And there is nothing much that can be done about it other than acceptance.
Monday, July 18, 2011
A Change of Scenery
We had a nice weekend at our place at Decatur Island. Good food (including crab!) and friends and a beautiful full moon on Saturday night/Sunday morning. I'm not sure what time it was in the middle of the night when Meagan woke me up to have me look at it. But it sure looked big!
Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.
It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.
Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.
Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.
It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.
Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.
Tuesday, June 28, 2011
Repetition
One of the many challenges with Meagan's memory loss and cognitive shortcomings due to the insult to her brain and the medications is the necessity of me explaining things over and over or responding to repeat questions. It takes more patience than I am sometimes able to muster, and I can get a bit short or cryptic, which is certainly not fair to her. She is seeking to understand her situation, in all its fullness and possibility, and I can tell when she is really trying to grasp at something. But it is difficult for her.
What is particularly challenging is when it is around the course of the disease and discussing where we stand and what are next steps and possible outcomes. Because she doesn't remember much I have to outline the various scenarios and outcomes, and then she usually needs a lot of clarification. So I get to experience the "re-traumatization" of description, while she is coming to an understanding. Over the course of the past week we have had this conversation several times, although she does not remember much about the prior conversations. So it's frustrating for both of us.
Additionally, she is coming around to the perspective that she just needs to live her life regardless of condition. So she has expressed an interest in getting back into her studio, doing more things, and generally not acting like a sick person. She wants to be around people who are positive (and not morose about her condition) and live a life of joy and not miss any good moments because she is dwelling on the possibility of a shorter life, even though she is aware that coud happen. So there is a yin/yang conflict - as she asks me about her condition and what is happening treatment wise and what it all means - she can legitimately become upset and emotional (compounded by the medication) and we have had many teary talks about the future. She is quite scared and sad about those possibilities. Yet she also wants to live on a day to day basis in not a pollyanna kind of way by ignoring the disease, but just not focused on the probabilities of her disease and likely outcome - instead focusing on the good and the potential of the immediacy of the moment for connection, joy, and fulfillment.
She is going to start seeing her therapist again, who she likes very much, for coping tools and help. The time period after her stroke, when she was in a very positive frame of mind are long gone, the seizures and medication seem to have eliminated that.
What is particularly challenging is when it is around the course of the disease and discussing where we stand and what are next steps and possible outcomes. Because she doesn't remember much I have to outline the various scenarios and outcomes, and then she usually needs a lot of clarification. So I get to experience the "re-traumatization" of description, while she is coming to an understanding. Over the course of the past week we have had this conversation several times, although she does not remember much about the prior conversations. So it's frustrating for both of us.
Additionally, she is coming around to the perspective that she just needs to live her life regardless of condition. So she has expressed an interest in getting back into her studio, doing more things, and generally not acting like a sick person. She wants to be around people who are positive (and not morose about her condition) and live a life of joy and not miss any good moments because she is dwelling on the possibility of a shorter life, even though she is aware that coud happen. So there is a yin/yang conflict - as she asks me about her condition and what is happening treatment wise and what it all means - she can legitimately become upset and emotional (compounded by the medication) and we have had many teary talks about the future. She is quite scared and sad about those possibilities. Yet she also wants to live on a day to day basis in not a pollyanna kind of way by ignoring the disease, but just not focused on the probabilities of her disease and likely outcome - instead focusing on the good and the potential of the immediacy of the moment for connection, joy, and fulfillment.
She is going to start seeing her therapist again, who she likes very much, for coping tools and help. The time period after her stroke, when she was in a very positive frame of mind are long gone, the seizures and medication seem to have eliminated that.
Thursday, April 28, 2011
Corn Flakes
The body and brain and are mysteries. I feel like a detective, trying to assess Meagan's physical and mental condition and adjust each day to suit her capacities and inclinations. Yesterday (Wednesday the 27th) was a pretty good day for her. By the end of the day I thought the right balance had been struck between rest, rehab, and relationships. She was able to get some stimulation and work parts of her body and yet also enjoy some times with family and friends. And funny enough, her body continues to crave and demand certain things as it attempts to resume control over her sodium levels. So Ritz crackers remain high on the list - munching quite happily 3-5 with each "feeding" as I term it of her pills.
Tuesday, April 26, 2011
Day One of Reahabilitation
Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.
Monday, April 25, 2011
Sunday, April 24, 2011
New Duties, New Blog Title
I guess it was not enough to be a cancer cabana boy. I thought that was a pretty worthy challenge. It was a knee buckler at times, but the work was steady and the client great, even though the pay was lousy.
But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.
But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.
Subscribe to:
Posts (Atom)