Meagan has aways been a leading edge kind of person. Whether it be fashion (best dressed in high school) or design or relationships. She has redefined how I view relationships, bringing huge doses of warmth, energy and empathy to many. In our relationship she was always fearless, bringing up topics and issues she felt we had to address. Our house has been a canvas for her personal style and self-expression and her desire to break out of the mold. She has been passionate in her pursuit of family traditions and bringing as many people around her during the holidays as she could.
All this is context for ANOTHER ground-breaking discussion this morning. Talk about thin ice and unbroken ground. It caught me completely off-guard. We started talking about Thanksgiving and how we'd pull it off the way she wants, given her limitations. I reminded her of the volunteers who offered to help and not just participate. That led to a discussion about traditions and she talked about her dear departed grandma's cinnamon rolls on Christmas morning and how Meagan has made them in our household and she wanted to make them this year with my help, which I willingly agreed to do. Then the surreal hit.
She got very teary and started talking about and worrying about and becoming very sad about what would happen after she is gone. Would we (the boys and I) make her grandma's cinnamon rolls? Would we get rid of all the colorful furniture and buy brown Pottery Barn furniture? Would we paint our beautiful walls beige and white? Would we stop hosting (extended) family holiday celebrations? Et cetera.
Wow!
I understand at some level the concern - would we carry on traditions and retain her personal imprint on our house and in our lives so we continue to remember her and who she was. She's concerned we don't value her uniqueness and the special elements she has brought to our lives and that with her passing, we'd erase those, and end up erasing our memory of her.
Naturally, I reassured her as best I could, given I hadn't even thought about this. She admitted that the medications might be driving a lot of the emotion and thoughts. But it was a very poignant conversation and the deep fear and concern about carrying her legacy forward and remembering her was evident. I just need to add another element to my cabana boy duties - convincing this remarkable woman that she will never be forgotten and that her legacy and traditions will carry on.
Showing posts with label caring for stroke victim. Show all posts
Showing posts with label caring for stroke victim. Show all posts
Saturday, October 22, 2011
Friday, October 21, 2011
Colors
We do try to find a little humor in things, after all it does ease the tension somewhat. One thing that I find comical, but totally in keeping with her artistic sensibility and personality is how she tracks her medications. I'm the one that delivers the handful of pills she needs at the appropriate times throughout the day. It is a moving target as new ones get added and old ones get phased out or reduced. Right now we are phasing out ibuprofen for pain and phasing in slowly gabapentin. Or as she likes to think, phasing in the yellow ones and phasing out the bright blue ones. She gets the little blue one first thing (steroids) and then another color batch at 9am. When a new color shows up I have to explain it to her and if it shows up more frequently I have to explain why. It works perfectly well for her, while I'm looking at prescription bottles, reading labels and following Dr Kaplan's oral instructions to dispense them correctly. This way she feels somewhat in control, from an understanding perspective (even though she has to rely on me), and it is on her terms - color palettes.
Wednesday, October 19, 2011
24 on the 24th
Despite all Meagan's travails, life moves on. Believe it or not, Monday the 24th is our 24th wedding anniversary. It is particularly poignant because we know it is pretty likely our last wedding anniversary together. She isn't in condition to acknowledge it with a blow-out celebration or big evening out. It will be quiet and meaningful. We've had a good run, lots of ups and downs over the years, but we've learned and grown and built a relationship for which I am very grateful.
She has of late been very concerned about the burden she is placing on me, mostly, the boys somewhat. I reminded her about the "for better or worse, in sickness and in health" vow, and that it was a vow. But I probably would not have been able to sustain the level of support she requires had it not been for all the heavy lifting we did in the earlier years of our relationship.
Regrettably her overall morale is ebbing and she could use a boost. She faces a lot of headwinds in the weeks to come. While we have enjoyed tremendous support from our friends and family, the long march we are on has led to periodic dips in communication. We are in a bit of a dip right now, and I'd love to get her some emotional support between now and our anniversary.
So if you haven't sent her a short note or card for a while, would you consider doing it now? It needs to be short. Maybe 24 words?
Her email address, if you'd prefer that is:
mabmacphee@mac.com
Our home address is:
5117 48th Ave NE
Seattle, WA 98105
I can assure you she reads everything that is sent her way. It is hard for her to respond, but she gets great delight in reading them and talking about the cards or notes with me.
She has of late been very concerned about the burden she is placing on me, mostly, the boys somewhat. I reminded her about the "for better or worse, in sickness and in health" vow, and that it was a vow. But I probably would not have been able to sustain the level of support she requires had it not been for all the heavy lifting we did in the earlier years of our relationship.
Regrettably her overall morale is ebbing and she could use a boost. She faces a lot of headwinds in the weeks to come. While we have enjoyed tremendous support from our friends and family, the long march we are on has led to periodic dips in communication. We are in a bit of a dip right now, and I'd love to get her some emotional support between now and our anniversary.
So if you haven't sent her a short note or card for a while, would you consider doing it now? It needs to be short. Maybe 24 words?
Her email address, if you'd prefer that is:
mabmacphee@mac.com
Our home address is:
5117 48th Ave NE
Seattle, WA 98105
I can assure you she reads everything that is sent her way. It is hard for her to respond, but she gets great delight in reading them and talking about the cards or notes with me.
Sunday, October 16, 2011
"Promise you won't forget me"...
I was only walking to the store and back with our dog.
But her tearful question was clearly loaded with more meaning. Part of it was due to some upset at her part at not being able to shoulder any of the load of running the household. And wanting to find something she could do for me, but can't. A much larger part of it was wanting me to remember her as she used to be - the vibrant, capable, smart woman I married. Not the person she has become. Reliant on others, unable to contribute. And part I suppose is based on recognition of her mortality and being gone, and not wanting me to forget her generally. It was such a gut-wrenching question and I could see the fear and worry and insecurity written all over her face. It must be just so terrible to have your mind slowly robbed of its capability and to have various insults delivered to your body which reduces your capacity to function as you once did. Then you add the worry that your life partner is getting used to doing everything on his own and it probably confirms that you are on a particular path.
Last night she made a comment to me about how she hoped she could be the partner I married. I tried to reassure her and told her that when I looked at her I was looking at 24 years of marriage and 24 years of memories and not the person she was at that instant. So not to worry about trying to be something today she is not - because I love her for all she is - which takes into account all the years.
But her tearful question was clearly loaded with more meaning. Part of it was due to some upset at her part at not being able to shoulder any of the load of running the household. And wanting to find something she could do for me, but can't. A much larger part of it was wanting me to remember her as she used to be - the vibrant, capable, smart woman I married. Not the person she has become. Reliant on others, unable to contribute. And part I suppose is based on recognition of her mortality and being gone, and not wanting me to forget her generally. It was such a gut-wrenching question and I could see the fear and worry and insecurity written all over her face. It must be just so terrible to have your mind slowly robbed of its capability and to have various insults delivered to your body which reduces your capacity to function as you once did. Then you add the worry that your life partner is getting used to doing everything on his own and it probably confirms that you are on a particular path.
Last night she made a comment to me about how she hoped she could be the partner I married. I tried to reassure her and told her that when I looked at her I was looking at 24 years of marriage and 24 years of memories and not the person she was at that instant. So not to worry about trying to be something today she is not - because I love her for all she is - which takes into account all the years.
Monday, October 10, 2011
"Don't you wish you were with someone else?"
This is the most recent question in a long line of questions (do you love me, do you still love me, do you still love me as much as you used to). It reflects increasing insecurity and unease with her mental and physical state (separate from the actual cancer). I don't think it's said with an eye to the future and after she is gone. It's a fear perhaps, that I will abandon her in her hours (weeks, months) of need.
Reassurance is the only answer. And when she hears it the tears come and the relief is palpable. As a caregiver there is so much attention paid to the logistics and medical issues that it is easy to forget what is the most powerful need. So I'm stepping up the dose of the reassurance medication.
Reassurance is the only answer. And when she hears it the tears come and the relief is palpable. As a caregiver there is so much attention paid to the logistics and medical issues that it is easy to forget what is the most powerful need. So I'm stepping up the dose of the reassurance medication.
Saturday, October 1, 2011
Resilience
Meagan's ability to bounce back from bad news is really remarkable. After a tumultuous day on Thursday, yesterday she was pretty calm and serene. She hasn't altered the current facts to suit her needs (as she has done sometimes in the past, when she would take the tiniest bit of hope and expand that to be the "base case"), rather, she is accepting where she is right now, and focusing on the present. She was able to use her computer and start arranging a few get-togethers, and that always gives her something to look forward to and a sense of accomplishment, even though it takes quite a while for her to write even a short email. We are shooting for going up to our place at Decatur Island next Thursday to Sunday, assuming everything goes well with the surgery on Monday and she is feeling up to it. She really wants to be up there - she loves it in the Fall and it would be a good getaway before starting chemo.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
Wednesday, September 28, 2011
A rugged couple days...
emotionally that is. Makes the actual physical stuff seem like a walk in the park.
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Tuesday, September 27, 2011
Off to results of MRI
a little tension this morning, even if we know of the possible outcomes. We see Dr. Kaplan at 9am. And then to head to Bakery Nouveau in West Seattle to commiserate or celebrate.
There is other tension too. Walking that fine line between being supportive and clarifying and "correcting" is terribly difficult. I have been reasonably successful. I failed yesterday. Being corrected is no fun, we all know that. Regrettably, Meagan's brain insults have given her poor memory, recall and the ability to articulate what she knows in her head. So not just facts and figures can be off (numbers for sure), but scenarios, explanations, and background discussions in the retelling. I've written before how often I spend going over and over what the process is or what our agenda is or what happened and will happen.
Last night, after she essentially made up some things to support what was in fact a true outcome, I did correct her. I only do this about one in five times, as I know most of the time it doesn't matter. But it was one too many last night, and it triggered a wave of emotion, discussion and tears, which linger this morning. I felt so bad, and feel so bad for her - this incredibly bright woman who has been affected by all the treatments and medications and cancer - to have to deal with the inability to get things clear. I'm just going to do my level best not to correct her anymore - unless it is a life or death issue. Her self-esteem and identity are too fragile and important to mess with by making sure things are factually correct.
I just need to find more patience and zip the lip.
There is other tension too. Walking that fine line between being supportive and clarifying and "correcting" is terribly difficult. I have been reasonably successful. I failed yesterday. Being corrected is no fun, we all know that. Regrettably, Meagan's brain insults have given her poor memory, recall and the ability to articulate what she knows in her head. So not just facts and figures can be off (numbers for sure), but scenarios, explanations, and background discussions in the retelling. I've written before how often I spend going over and over what the process is or what our agenda is or what happened and will happen.
Last night, after she essentially made up some things to support what was in fact a true outcome, I did correct her. I only do this about one in five times, as I know most of the time it doesn't matter. But it was one too many last night, and it triggered a wave of emotion, discussion and tears, which linger this morning. I felt so bad, and feel so bad for her - this incredibly bright woman who has been affected by all the treatments and medications and cancer - to have to deal with the inability to get things clear. I'm just going to do my level best not to correct her anymore - unless it is a life or death issue. Her self-esteem and identity are too fragile and important to mess with by making sure things are factually correct.
I just need to find more patience and zip the lip.
Monday, September 26, 2011
At Nordstrom...
again, except this time it is the Nordstrom Medical Tower at Swedish for a visit to Seattle Radiology for an MRI this afternoon of her neck and right brachial plexus. Both of these are location areas which would generate nerve sensations resulting from tumors pressing on areas of the upper spine.Then we meet with Kaplan tomorrow morning at 9:00a.m. to discuss the results. Many things on the plate:
1. Brain tumor treatment - gamma knife this Thursday.
2. Discuss excision of tumor on her upper arm - she wants it out.
3. Start of chemotherapy.
4. What to do if there is anything showing up in the MRI.
5. Follow-up scans of tomo therapy treated spine.
Sequencing all this will be interesting...especially if she has to do chemo and radiation in parallel...
In the meantime it is just a lot to keep her apprised and steady. She was pretty upset last night as she knew she hadn't been thinking well yesterday and was having a hard time following things.
It was also a challenge this morning trying to figure out where her back pain was - the ibuprofen she's been on the last couple days to ease her arm pain has helped with her back (and knee) but she couldn't remember the location of the pain. Kind of makes it hard to figure out what areas to scan or whether to scan. And she can't remember the onset of the pain and whether it is fall-related or maybe cancer-related. I can see the difficulty ahead for many caregivers with loved ones who have memory issues - just figuring out what is going on and where is hard. And you can't just do a full body scan whenever something is amiss.
Breathing slowly today....
1. Brain tumor treatment - gamma knife this Thursday.
2. Discuss excision of tumor on her upper arm - she wants it out.
3. Start of chemotherapy.
4. What to do if there is anything showing up in the MRI.
5. Follow-up scans of tomo therapy treated spine.
Sequencing all this will be interesting...especially if she has to do chemo and radiation in parallel...
In the meantime it is just a lot to keep her apprised and steady. She was pretty upset last night as she knew she hadn't been thinking well yesterday and was having a hard time following things.
It was also a challenge this morning trying to figure out where her back pain was - the ibuprofen she's been on the last couple days to ease her arm pain has helped with her back (and knee) but she couldn't remember the location of the pain. Kind of makes it hard to figure out what areas to scan or whether to scan. And she can't remember the onset of the pain and whether it is fall-related or maybe cancer-related. I can see the difficulty ahead for many caregivers with loved ones who have memory issues - just figuring out what is going on and where is hard. And you can't just do a full body scan whenever something is amiss.
Breathing slowly today....
Wednesday, September 14, 2011
Humpty Dumpty
had a great fall...and so did Meagan. The Burke Gilman Trail got the better of her yesterday. We were walking after her treatment - the game plan was to walk from University Village to Metropolitan Market and back and then have frozen yogurt at Red Mango. But not very far into it, she missed a step and before I could catch her, hit the deck in a full sprawl.
Result: one skinned knee, one skinned and very swollen knee, one hand skinned and swollen, and a slight cut above her eye. Nothing broken, including glasses or watch. So we went home and got her patched up and iced and laced with more ibuprofen. Her knee is pretty stiff.
This woman did not need this. She has been unsteady of late and I try to watch her and prevent this, and I have prevented a few spills and bumps before. But gravity is faster than I am sometimes...
The good news is - it did not prevent her from a planned dinner out to celebrate our son's twentieth birthday!
Result: one skinned knee, one skinned and very swollen knee, one hand skinned and swollen, and a slight cut above her eye. Nothing broken, including glasses or watch. So we went home and got her patched up and iced and laced with more ibuprofen. Her knee is pretty stiff.
This woman did not need this. She has been unsteady of late and I try to watch her and prevent this, and I have prevented a few spills and bumps before. But gravity is faster than I am sometimes...
The good news is - it did not prevent her from a planned dinner out to celebrate our son's twentieth birthday!
Saturday, September 10, 2011
11 down, 4 to go...
Our daily trips to Ballard are soon coming to an end...for the time being. Meagan has done very well with the Tomo therapy radiation treatment - no side effects to speak of. After each treatment she seems a little unsteady, but that pretty quickly resolves. She has four more spine radiation treatments next week, then a brain MRI on Friday (the follow-up to the Gamma knife radiation treatment of her most recent brain tumors), with the results discussed in person with Dr. Vermeulen the following Monday. We continue to be impressed with the staff at the Ballard Swedish Radiation clinic - very helpful and Dr. Landis is quite personable and patient at answering Meagan's questions.
The big question she has these days is, will her mental state get any better, either from being able to reduce the drugs she is on, or as the effects of the last brain radiation treatment diminish. It has been a very frustrating couple weeks for her - she realizes her mental state ranges from not sharp to downright loopy. It definitely is worse after she takes her medications at 9:00am, but even before that (from when she gets out of bed around 6:30am) she is a bit fuzzy. It is impairing her ability to do some things she wants to do, as she can't keep a train of thought, or write well, or follow the thread of a conversation or book. It has also been increasingly frustrating for us at home, as she has to ask the same questions over and over (because she can't remember she asked them or she can't remember the prior response).
Both Dr. Kaplan and Landis couldn't offer much in the way of prognosis about what is causing the mental state or how it might be reduced. She is on so many medications and has had so many brain insults it is hard to figure out what exactly is causing it. And, as I told her last night, it is pretty unlikely that she is going to have her medications reduced, in fact it is more likely they would get increased (for example, the steroid dose) as more tumors present. This obviously doesn't make her happy - but we talked about shifting the focus to figuring out different strategies to get done what she wants to get done, assuming the continuation of her present mental condition.
Meagan has never wanted to look ahead at her prognosis or what possible paths the disease can take. She feels that any discussion of this takes away from her enjoyment of whatever life she has left. It's not how every person would deal with a life ending disease, but it is the way she wants to deal with it. It's not complete denial - she knows where this is headed, she just doesn't want to think about it. It is a conundrum however, because then the doctors don't lay out all the facts and impacts for her of treatments and progression (although I know). So then when issues arise later, sometimes she is surprised or upset. For example, when the latest brain tumors were discovered, all she wanted to hear from the radiation person was, "we can handle this, these are small". It was the confidence of Dr. Vermeulen that was more important than the data (size and location of tumors, potential impacts), and the way the message was delivered. But fast forward, and she did have side effects (speech slurred, mental faculties diminished, ability to do things like write, read, follow conversations reduced) and then when she hears that the one tumor was a decent size (small is all relative) and by the zappage getting some healthy brain tissue as margin, some brain impact did result, it causes her to be upset. Then due to her mental abilities, it becomes hard for her to follow my recount of how we got to where we are. It is also complicated by the fact that she can't remember well anymore, and what she does remember tends to be what she wants to remember, or partially invented.
Obviously trying to nail down the difference between perception and reality in her state is not particularly useful, especially for past history. So as I told her yesterday, let's not focus on that - trying to dissect your recollection of what the tumor sizes were and what Dr. Vermeulen said and how that might be different from your perception today. Because likely those tumors are handled - they've been treated. Those are not what are going to get you. If she wants, the next time she gets zapped we can get a copy of the radiation pathology report and read it in detail and know exactly what she is faced with. That is an option. But we also don't have to - especially if she doesn't want to focus on future impacts.
She knows our program is scan and zap, rotating between head and body, and that apparently the radiation treatment can have some positive effect, until at some point the tumor burden overwhelms the ability of the medical community to address it. So we are in a weird kind of disease limbo land - it's active, it's popping up in really bad places, but at this point appears controllable, without physical side effects, just mental (and emotional) ones. And life isn't really too bad for her, relative to others who have this. So we need to be somewhat appreciative for where we are right now, and she gets that.
The big question she has these days is, will her mental state get any better, either from being able to reduce the drugs she is on, or as the effects of the last brain radiation treatment diminish. It has been a very frustrating couple weeks for her - she realizes her mental state ranges from not sharp to downright loopy. It definitely is worse after she takes her medications at 9:00am, but even before that (from when she gets out of bed around 6:30am) she is a bit fuzzy. It is impairing her ability to do some things she wants to do, as she can't keep a train of thought, or write well, or follow the thread of a conversation or book. It has also been increasingly frustrating for us at home, as she has to ask the same questions over and over (because she can't remember she asked them or she can't remember the prior response).
Both Dr. Kaplan and Landis couldn't offer much in the way of prognosis about what is causing the mental state or how it might be reduced. She is on so many medications and has had so many brain insults it is hard to figure out what exactly is causing it. And, as I told her last night, it is pretty unlikely that she is going to have her medications reduced, in fact it is more likely they would get increased (for example, the steroid dose) as more tumors present. This obviously doesn't make her happy - but we talked about shifting the focus to figuring out different strategies to get done what she wants to get done, assuming the continuation of her present mental condition.
Meagan has never wanted to look ahead at her prognosis or what possible paths the disease can take. She feels that any discussion of this takes away from her enjoyment of whatever life she has left. It's not how every person would deal with a life ending disease, but it is the way she wants to deal with it. It's not complete denial - she knows where this is headed, she just doesn't want to think about it. It is a conundrum however, because then the doctors don't lay out all the facts and impacts for her of treatments and progression (although I know). So then when issues arise later, sometimes she is surprised or upset. For example, when the latest brain tumors were discovered, all she wanted to hear from the radiation person was, "we can handle this, these are small". It was the confidence of Dr. Vermeulen that was more important than the data (size and location of tumors, potential impacts), and the way the message was delivered. But fast forward, and she did have side effects (speech slurred, mental faculties diminished, ability to do things like write, read, follow conversations reduced) and then when she hears that the one tumor was a decent size (small is all relative) and by the zappage getting some healthy brain tissue as margin, some brain impact did result, it causes her to be upset. Then due to her mental abilities, it becomes hard for her to follow my recount of how we got to where we are. It is also complicated by the fact that she can't remember well anymore, and what she does remember tends to be what she wants to remember, or partially invented.
Obviously trying to nail down the difference between perception and reality in her state is not particularly useful, especially for past history. So as I told her yesterday, let's not focus on that - trying to dissect your recollection of what the tumor sizes were and what Dr. Vermeulen said and how that might be different from your perception today. Because likely those tumors are handled - they've been treated. Those are not what are going to get you. If she wants, the next time she gets zapped we can get a copy of the radiation pathology report and read it in detail and know exactly what she is faced with. That is an option. But we also don't have to - especially if she doesn't want to focus on future impacts.
She knows our program is scan and zap, rotating between head and body, and that apparently the radiation treatment can have some positive effect, until at some point the tumor burden overwhelms the ability of the medical community to address it. So we are in a weird kind of disease limbo land - it's active, it's popping up in really bad places, but at this point appears controllable, without physical side effects, just mental (and emotional) ones. And life isn't really too bad for her, relative to others who have this. So we need to be somewhat appreciative for where we are right now, and she gets that.
Tuesday, September 6, 2011
To Help or not...
ANOTHER challenge I face is when to let Meagan go it alone or when to help. Picking the wrong answer generates either the evil eye or increases her risk of injury. This is especially true in unfamiliar environments.
We had a very nice weekend at our place at Decatur. It does have stairs, which caused me more than a little concern at times (they do have handrails from the main floor to the upper story - but there are a couple steps coming down from the kitchen to the family room and those are particularly scary for me when she has a cup of coffee in one hand and a glass of water in the other), but I resisted the urge to help her. The act of helping implies disability, which adds to the other insults she's feeling, continuing the loss of identity and capability. But she did fine at our place, mostly because she is familiar with it. A lot of the worry is around her loss of visual capability, since she has lost her right peripheral vision, and her mind fills in the gap, she isn't always clear about the terrain, nor can she see actual hazards. It also means she doesn't always walk a straight line...a little worrisome when she was walking down the narrow dock. She does fine on even ground.
When we were getting aboard the boat to come home, there are stairs and rises at the hatchways. I was holding her arm (but on the right side and since she couldn't see me wondered if there was some strange man accosting her...) and guiding her toward the hatchway to the main deck sitting room. I said, out loud, "honey, watch your step". After she stepped through, I got the look back and the evil eye. I didn't want her to trip and I wasn't clear at all that her vision would have picked this up - but she clearly had seen it. So saying that out loud announced to the world her deficit potential - and that is not at all a comfortable thing for her. She is sensitive about this, as would we all. So I gulped and made a mental note - ok, she is fine on this boat in the future.
On the drive back to Seattle, we stopped for a quick bite to go as is our custom. She wanted a milkshake (but also couldn't pass up the chipotle turkey burger) and we stopped at the Fidalgo Inn drive in. From the car there was a car curb stop, and a short half stair before one gets to the entrance door. I figured after the boat incident I wouldn't say anything (I am not a glutton for punishment). At entrance ways, I try to get there first (to open the door if necessary) so I can be right behind her and guide her from behind if need be. I did, but as she started walking through the door at a reasonable speed, her attention was straight ahead looking at the menu on the wall. She was about to walk right into the right door jamb had I not caught her shoulder and slowed and maneuvered her to the left. She would have hit that doorway hard on her shoulder. So in that case it was good to intervene, and it was subtle, and she barely noticed the assistance, nor did I get the "good eye" - the "thanks for keeping me from being injured" look.
So it is a process of continually monitoring, being as subtle as I can in helping her, and not drawing attention to her challenges in public.
We had a very nice weekend at our place at Decatur. It does have stairs, which caused me more than a little concern at times (they do have handrails from the main floor to the upper story - but there are a couple steps coming down from the kitchen to the family room and those are particularly scary for me when she has a cup of coffee in one hand and a glass of water in the other), but I resisted the urge to help her. The act of helping implies disability, which adds to the other insults she's feeling, continuing the loss of identity and capability. But she did fine at our place, mostly because she is familiar with it. A lot of the worry is around her loss of visual capability, since she has lost her right peripheral vision, and her mind fills in the gap, she isn't always clear about the terrain, nor can she see actual hazards. It also means she doesn't always walk a straight line...a little worrisome when she was walking down the narrow dock. She does fine on even ground.
When we were getting aboard the boat to come home, there are stairs and rises at the hatchways. I was holding her arm (but on the right side and since she couldn't see me wondered if there was some strange man accosting her...) and guiding her toward the hatchway to the main deck sitting room. I said, out loud, "honey, watch your step". After she stepped through, I got the look back and the evil eye. I didn't want her to trip and I wasn't clear at all that her vision would have picked this up - but she clearly had seen it. So saying that out loud announced to the world her deficit potential - and that is not at all a comfortable thing for her. She is sensitive about this, as would we all. So I gulped and made a mental note - ok, she is fine on this boat in the future.
On the drive back to Seattle, we stopped for a quick bite to go as is our custom. She wanted a milkshake (but also couldn't pass up the chipotle turkey burger) and we stopped at the Fidalgo Inn drive in. From the car there was a car curb stop, and a short half stair before one gets to the entrance door. I figured after the boat incident I wouldn't say anything (I am not a glutton for punishment). At entrance ways, I try to get there first (to open the door if necessary) so I can be right behind her and guide her from behind if need be. I did, but as she started walking through the door at a reasonable speed, her attention was straight ahead looking at the menu on the wall. She was about to walk right into the right door jamb had I not caught her shoulder and slowed and maneuvered her to the left. She would have hit that doorway hard on her shoulder. So in that case it was good to intervene, and it was subtle, and she barely noticed the assistance, nor did I get the "good eye" - the "thanks for keeping me from being injured" look.
So it is a process of continually monitoring, being as subtle as I can in helping her, and not drawing attention to her challenges in public.
Saturday, September 3, 2011
To clarify or not...
One of the challenges Meagan faces is around memory and communication. In some ways she is as sharp as ever - remembering names and events from long ago. Her shorter term memory though has changed. She will be describing something which took place - and one of two things will occur. She will not remember the details and will make stuff up to suit her narrative, and then look to me for validation. Or even though I know she knows inside what she means, what she says will come out differently than what she sees in her head. That tends to particularly happen when it comes to time, dates and numbers.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
Thursday, September 1, 2011
One Year Anniversary
Today marks the one year anniversary from the time we got the call from Dr. Kaplan to tell us that is was metastatic melanoma. It ranks pretty high up there on the worst days of my life meter, followed two days later by us having to skype the boys separately and tell them.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
Tuesday, August 30, 2011
What is it with Guys?
This is kind of a rant. I get the inherent differences between the sexes and over the years I've had enough books thrust at me by Meagan ("Men are from Mars, Women from Venus") to explain the differences and provide instruction for me to become more (here you can fill in the word: vulnerable, communicative, non-critical, non-judgmental, empathetic, open, able to talk things through, etc.). Being a guy I know when things are challenging emotionally and when the flight response kicks in and I have to fight the urge to "run to my cave". I also get that guys still have that macho thing and whether they know it or not, there is the status hierarchy thing, and then with all good intention - not bringing up topics which put the other guy in a situation where they show weakness or vulnerability (this probably is happening a lot in parts of the real world with unemployment of middle age white guys being so high). I also know that guys tend to focus on work or sports and having been a stay-at-home dad when Meagan went back to school to get her English degree at the UW, understand the awkwardness of being in a social situation and seeing guys having to deal with my response to the question: "so what do you do?". Guys are still defined mostly by what they do, not who they are, and conversation tends to stick to that realm. Or the kids. My point in all this is I think I have an ability to assess things from multiple perspectives, but am still puzzled and irritated by the following.
As a caregiver I have received an incredible amount of support from our female friends and family. It's really pretty amazing. Caregivers are often forgotten, period, because after all, the person with the cancer deservedly needs attention. When you have a situation like ours - where it has gone on for some time (and hopefully will continue for a while longer) - there is even the danger that the attention wavers from the cancer victim - I am so grateful that is not the case with us. As a caregiver I have received thoughtful cards, email notes, offers of support, invitations to coffee, books, and gifts (including one great massage appointment at a wonderful spa) from the females. And in person they invariably want to know how I am doing, and invite me to talk about how I'm feeling and provide expressions of support and empathy. It's probably not surprising given the kind of people with whom we have surrounded ourselves over the years. So I am very grateful for this support - it has truly helped me in what really is a tragic (and long term) situation with our family.
So here is the "but". Where are the guys? I can count on one hand the guys who have reached out and come close to matching the response of the females. I might get an email or facebook post once in a while that is a one liner - "if there is anything I can do, let me know" (note: this may be the single most unhelpful offer someone can provide - it's the equivalent of the Hollywood producer saying, "call me"). In the last year (it is coming up on our official diagnosis one year anniversary in two days) I have received maybe three substantive cards from my male acquaintances. I can reliably count on two men to reach out regularly and invite me to coffee or tea to just talk. In social situations I never get any inquiries into how I am doing or any expressions of empathy or understanding - even when they have deep knowledge of the situation. Over the last weekend we were at a large celebration and I was talking briefly with an older guy I know (one generation above me) whose wife had gone through cancer and strokes (you'd think there would be a little common ground...) and his one comment to me was, "I know what you are going through", before he asked me what I thought of Microsoft's executive management (as if I care...). Nobody else even acknowledged what I might be going through or asked a single question. If I brought it up in any way to a guy it was reliably brushed aside (so you pretty quickly stop doing that - I am not a masochist).
Really, it's weird. It's like the elephant in the room maybe. Maybe they think by asking the questions - "how are you holding up?", or "it must be hard, what are you doing to take care of yourself?" - it will open up an emotional situation that they find too uncomfortable. Maybe they don't want to bother me or make me emotionally upset (better not to say anything to rock his boat even more) and think it's a good thing to not say anything. Maybe they are clueless? Narcissistic? It's not like these are Neanderthals - these are all bright, educated, professional men who are married to great women. I just don't get it.
Meagan and I often talk about the gifts that cancer has brought - not that we wanted them - but we have learned important lessons and been the recipients of marvelous gifts and enhanced relationships as a result of her disease. I have learned from my female friends and family and a few males what one can do in this kind of situation for a caregiver that will be meaningful. I know that most of my male friends are going to be in my situation eventually - for their spouse or parent or loved one. I now know what to do in that situation and I will do it. Because they will need it and they won't be getting it from their other male friends.
As a caregiver I have received an incredible amount of support from our female friends and family. It's really pretty amazing. Caregivers are often forgotten, period, because after all, the person with the cancer deservedly needs attention. When you have a situation like ours - where it has gone on for some time (and hopefully will continue for a while longer) - there is even the danger that the attention wavers from the cancer victim - I am so grateful that is not the case with us. As a caregiver I have received thoughtful cards, email notes, offers of support, invitations to coffee, books, and gifts (including one great massage appointment at a wonderful spa) from the females. And in person they invariably want to know how I am doing, and invite me to talk about how I'm feeling and provide expressions of support and empathy. It's probably not surprising given the kind of people with whom we have surrounded ourselves over the years. So I am very grateful for this support - it has truly helped me in what really is a tragic (and long term) situation with our family.
So here is the "but". Where are the guys? I can count on one hand the guys who have reached out and come close to matching the response of the females. I might get an email or facebook post once in a while that is a one liner - "if there is anything I can do, let me know" (note: this may be the single most unhelpful offer someone can provide - it's the equivalent of the Hollywood producer saying, "call me"). In the last year (it is coming up on our official diagnosis one year anniversary in two days) I have received maybe three substantive cards from my male acquaintances. I can reliably count on two men to reach out regularly and invite me to coffee or tea to just talk. In social situations I never get any inquiries into how I am doing or any expressions of empathy or understanding - even when they have deep knowledge of the situation. Over the last weekend we were at a large celebration and I was talking briefly with an older guy I know (one generation above me) whose wife had gone through cancer and strokes (you'd think there would be a little common ground...) and his one comment to me was, "I know what you are going through", before he asked me what I thought of Microsoft's executive management (as if I care...). Nobody else even acknowledged what I might be going through or asked a single question. If I brought it up in any way to a guy it was reliably brushed aside (so you pretty quickly stop doing that - I am not a masochist).
Really, it's weird. It's like the elephant in the room maybe. Maybe they think by asking the questions - "how are you holding up?", or "it must be hard, what are you doing to take care of yourself?" - it will open up an emotional situation that they find too uncomfortable. Maybe they don't want to bother me or make me emotionally upset (better not to say anything to rock his boat even more) and think it's a good thing to not say anything. Maybe they are clueless? Narcissistic? It's not like these are Neanderthals - these are all bright, educated, professional men who are married to great women. I just don't get it.
Meagan and I often talk about the gifts that cancer has brought - not that we wanted them - but we have learned important lessons and been the recipients of marvelous gifts and enhanced relationships as a result of her disease. I have learned from my female friends and family and a few males what one can do in this kind of situation for a caregiver that will be meaningful. I know that most of my male friends are going to be in my situation eventually - for their spouse or parent or loved one. I now know what to do in that situation and I will do it. Because they will need it and they won't be getting it from their other male friends.
Saturday, August 27, 2011
Hurricane.....Meagan
Is it coincidental that on the day Irene hits the U.S. coast, we had a hurricane come ashore right here at home? I've written in the past about the mood swings which have hit her due to the medications, and the challenges she has when things are out of a certain zone. When your personal health is going through dramatic negative changes, and you get health news which swings you from one end of the emotional spectrum to another - it is not surprising there is a need for stability. We have tried to accomplish that - but it is not possible to simply freeze things. I try to cocoon her as much as possible and create the time and space for her to feel comfortable - such as not scheduling things too early so she can move at her own pace to get ready in the morning.
At our home, we now have two young adults living with us, which is a good thing. They have made personal sacrifices to be here with their mom during this time, and it has definitely changed the trajectory of their lives, not for the good. So we have tried to accomodate their needs for personal space, to make this the best living arrangement possible. Given we have a large enough house, it was a matter of changing the function of certain rooms, and one significant change was for Meagan to move her studio to what was my old office. That was difficult for her - although she understood and supported it - nonetheless emotionally it felt like a statement was being made about moving her on.
Over the last while we have been following through on some of our earlier decisions, and that has involved some minor construction. Even though we have a fantastic contractor, who she likes very much, it is still disruptive, noisy at times, and can occur at inconvenient times. Such as when you are going through one of your emotional valleys. So this morning, we had some work going on and it triggered a pretty dramatic response. Of course reiterating the logic of it all was not helpful. Our expressions of empathy fell on deaf ears. I suppose it is almost impossible for us to feel how she is feeling, when what she wants is stability and her space, her home as she knows it, but what she is getting is change. And change is very hard for her right now - because it is a portent of things to come in her mind - it represents something else.
Even after Riley made a brilliant argument to her about how these changes were all about family (and not about the cancer per se or prepping the space in any way for "after"), and being able to be together better, and have space he needs and some common space that is more conducive to family movie watching - even though she knows it is true, it was still too much. And we are guys - we just can't deliver what she needs at times - even though some of us are going pretty far beyond our comfort zones.
Even though we can empathize and bend over backwards to support her - we cannot freeze things. Change does happen. It should happen. It's frustrating for us when she gets out of sorts at previously agreed to matters - even though we know it's because she has forgotten or the context has changed for her. Because of her state of mind, it is hard for her to empathize the other direction - the cancer sort of trumps all. We get it. But it is frustrating and as much as I would like to be a saint - it isn't always possible.
Cancer sucks.
At our home, we now have two young adults living with us, which is a good thing. They have made personal sacrifices to be here with their mom during this time, and it has definitely changed the trajectory of their lives, not for the good. So we have tried to accomodate their needs for personal space, to make this the best living arrangement possible. Given we have a large enough house, it was a matter of changing the function of certain rooms, and one significant change was for Meagan to move her studio to what was my old office. That was difficult for her - although she understood and supported it - nonetheless emotionally it felt like a statement was being made about moving her on.
Over the last while we have been following through on some of our earlier decisions, and that has involved some minor construction. Even though we have a fantastic contractor, who she likes very much, it is still disruptive, noisy at times, and can occur at inconvenient times. Such as when you are going through one of your emotional valleys. So this morning, we had some work going on and it triggered a pretty dramatic response. Of course reiterating the logic of it all was not helpful. Our expressions of empathy fell on deaf ears. I suppose it is almost impossible for us to feel how she is feeling, when what she wants is stability and her space, her home as she knows it, but what she is getting is change. And change is very hard for her right now - because it is a portent of things to come in her mind - it represents something else.
Even after Riley made a brilliant argument to her about how these changes were all about family (and not about the cancer per se or prepping the space in any way for "after"), and being able to be together better, and have space he needs and some common space that is more conducive to family movie watching - even though she knows it is true, it was still too much. And we are guys - we just can't deliver what she needs at times - even though some of us are going pretty far beyond our comfort zones.
Even though we can empathize and bend over backwards to support her - we cannot freeze things. Change does happen. It should happen. It's frustrating for us when she gets out of sorts at previously agreed to matters - even though we know it's because she has forgotten or the context has changed for her. Because of her state of mind, it is hard for her to empathize the other direction - the cancer sort of trumps all. We get it. But it is frustrating and as much as I would like to be a saint - it isn't always possible.
Cancer sucks.
Tuesday, August 23, 2011
A brief follow-up to the earlier post labeled "Time"
I don't want people to misconstrue the earlier post describing her changed capabilities. It was not meant to discourage people from contacting her. It was to describe what she is going through (cognitively, physically, and emotionally) and provide some explanation for why she might not be responding in her usual manner. And to assure people that contact is welcome and received, even though it might not get responded to.
I made a point in that post about how important it was to her to manage her own schedule and communication. All the changes that have occurred have left her in a dependent state in many respects. This is not comfortable for her. She even hates that I have to drive her everywhere. She was proud of her identity and ability to be a smart, high functioning, independent person. So given the changes, while I can step in gently in certain matters - such as keeping her on track with medical appointments - she has made it very clear to me that she wants to be in control of her schedule and communications - it is not something for me to take over - I have neither the right nor the will. Because it allows her some measure of independence and freedom and control. That is very important to her when so much of her other aspects are out of her control - due to medication, radiation and the impacts on the brain, and the stroke effects. She has more than enough capability to decide how to fill her schedule, even though some of the details might be fuzzy. And even though the usual tools - email, phone, Facebook - take more time or don't get looked at for a while. She also realizes that she needs to create her own time to handle her emotional and physical responses to the events, and to engage in important activities in her studio - even at the cost of not being as responsive or seeing as many people as she would like as often as she would like - but it is a conscious choice.
I made a point in that post about how important it was to her to manage her own schedule and communication. All the changes that have occurred have left her in a dependent state in many respects. This is not comfortable for her. She even hates that I have to drive her everywhere. She was proud of her identity and ability to be a smart, high functioning, independent person. So given the changes, while I can step in gently in certain matters - such as keeping her on track with medical appointments - she has made it very clear to me that she wants to be in control of her schedule and communications - it is not something for me to take over - I have neither the right nor the will. Because it allows her some measure of independence and freedom and control. That is very important to her when so much of her other aspects are out of her control - due to medication, radiation and the impacts on the brain, and the stroke effects. She has more than enough capability to decide how to fill her schedule, even though some of the details might be fuzzy. And even though the usual tools - email, phone, Facebook - take more time or don't get looked at for a while. She also realizes that she needs to create her own time to handle her emotional and physical responses to the events, and to engage in important activities in her studio - even at the cost of not being as responsive or seeing as many people as she would like as often as she would like - but it is a conscious choice.
Sunday, August 21, 2011
Time
Everyone knows how Meagan is very much a social creature, who thrives on contact and connection with people - biological family, created family, and friends. It really defines her. She also does not want to hurt people's feelings - she is quite sensitive to that. Even in her best days she was constantly fretting about that - managing her calendar so that she could see the people she wanted and needed to. She would talk about the need to create time for herself to work on her Milton project (illuminating "Paradise Lost") and it was always a struggle to get enough time to do that and meet her social obligations (which were visits with people). Fortunately she had email and Facebook, and in the mornings and evenings she could catch up with people even if she couldn't see them in person.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Saturday, August 20, 2011
Identity
A friend sent me the book, "About Alice", by Calvin Trillin. It's a wonderful book, a love story really about his wife. Alice died of her cancer related treatments. One line she said in a speech really struck me - "the worst thing cancer can do is rob you of your identity". How true...
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
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