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 husband supporting wife cancer. Show all posts
Showing posts with label husband supporting wife cancer. Show all posts
Saturday, October 22, 2011
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.
Off to Neurologist Today
Have a mid-day appointment at the neurologist to discuss her right arm/shoulder/lower neck issues. I am not sure she will have the actual EMG/nerve conduction study today. There is a process we are told, and the first step is the consult with the doctor. But it will be good to get in and get the process going. She remains relatively pain free for now in this area thanks to the work of the steroids.
But unfortunately this is a war on many fronts and there is pain in other areas. The pain in her lower back is increasing and becoming more defined. That it is still doing this despite the steroids for her arm tells me it has a different character - like maybe it is due to spinal tumors. But that is speculation for now.
What it does mean is we have a long list of things to discuss with Dr Kaplan. Her arm. Her back. The tumor in her upper left leg. Her pain medications. Her blood count and whether she will be able to do chemo or not. She remains very shaky and it's hard not to think she is still anemic and that the low blood count is due to some cancer cause.
She is pretty discouraged by the mounting list of ailments. Who wouldn't be?
But unfortunately this is a war on many fronts and there is pain in other areas. The pain in her lower back is increasing and becoming more defined. That it is still doing this despite the steroids for her arm tells me it has a different character - like maybe it is due to spinal tumors. But that is speculation for now.
What it does mean is we have a long list of things to discuss with Dr Kaplan. Her arm. Her back. The tumor in her upper left leg. Her pain medications. Her blood count and whether she will be able to do chemo or not. She remains very shaky and it's hard not to think she is still anemic and that the low blood count is due to some cancer cause.
She is pretty discouraged by the mounting list of ailments. Who wouldn't be?
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.
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.
Thursday, September 22, 2011
The Missing Fun Factor
Just an observation...I recall that there used to be periods of time in my life where I could have something called "fun". It might have been on a vacation, or during a period of time where all was particularly going well and I was engaged in some particular activity. I recall one summer we spent quite a bit of extended time at Decatur when the kids were young, and it was weeks of tennis, crabbing, good food and friends, playing "capture the flag" - without much of a care for things outside that bubble. That was definitely fun. Certainly with a growing family and work responsibilities and school and working on the spousal relationship there were stressful periods and hard periods, but usually we had something to look forward to that we knew would be a stress relief - a ski vacation or trip to Hawaii - a period of time when you could (even if artificially) pack your troubles away and enjoy life. In hindsight I can see that a lot of what I considered stresses back then were peanuts compared to today, and I should have been much more grateful for the everyday life we had and found more fun in that, rather than just waiting for a particular period of time like a vacation.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Tuesday, September 20, 2011
Post Results Day Paralysis
It is a fantastically beautiful day in Seattle today. I was able to sneak out and get a one and 1/2 hour ride in this morning while the boys were both here with Meagan - so got the endorphins going and the scenery on my Lake Washington ride loop is pretty incredible - both volcanoes out in full glory (Mt. Rainier, Mt. Baker) and the lake was calm and blue. So I should be feeling pretty good and motivated and able to tackle a few things on the chore list. But I find myself paralyzed by the opportunity. I feel like doing nothing. Not even reading. This is not the first time I've felt this way. It comes with the territory of the build up to the scan results and the figuring out of the plan. It kind of feels like when I have finished some epic 6-10 hour bike ride, when you are all cleaned up, but have nothing in the tank and just want to sit and stare at the wall. I'm ok with this. I don't feel guilty (like I might have in the past). It's just an interesting phenomenon - one I accept - that is probably pretty common amongst caregivers. So I think I will go outside and watch the birds.
The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.
The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.
Wednesday, September 14, 2011
"Is it worth it?"...
Her back was painful yesterday, and she noticeably winced when I was parking the car at the treatment center and bumped the curb (not that hard mind you) and the car jolted a bit. She had taken some ibuprofen just before we left home and it hadn't kicked in yet. She then asked when the radiation was supposed to reduce the spinal tumor so it wasn't impinging on the nerve. I thought the doctor had said about three weeks but wasn't sure.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
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!
Tuesday, September 13, 2011
Optimism, Pessimism, and Realism...
I used to think of myself as an optimist. Invariably no matter the circumstances, I would look to the possible good outcomes and orient my thoughts and actions that way. In looking back over some of the posts on this blog for the last number of months, I realize that the optimist is giving way to something else. And it ends up permeating other aspects of one's life. This is not surprising I suppose given how dominant Meagan's disease is in our life - it is the topic of conversation (when one includes talking about treatments, side effects, appointments, etc.) and the primary activity driver (driving to and from appointments, waiting, watching over her, etc.). I really don't have a life outside of the disease, even though it is she that has it, and I find it pretty hard to believe that any caretaker could remain positive over a significant period of time as the disease takes its toll and the downward cycle continues.
Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.
I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.
We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.
So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.
Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.
I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.
We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.
So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.
Wednesday, September 7, 2011
The Caregiver Burden
Over the past number of months I have had the opportunity to talk with others who have caretaker roles for loved ones. The burdens and responsibilities vary, as do the circumstances and timeframes. We share some commonalities though. I thought I'd list some (not all) from my personal experience and communications.
1. Treatment decisions, especially if the person affected is incapable of making the decision on their own. It means you have to do the research, have the questions ready for the doctors, and then help the person affected understand as much as they can and make as much of the decision as they can. In many situations involving life ending diseases or natural end of life conditions - there are a number of options with different consequences. Balancing quality of life with treatment impacts is challenging. Especially because humans are remarkably resilient and can surprise with their ability to bounce back from dips. And the technology is evolving rapidly - end of life and cutting edge life extension treatments can be enormously expensive (thank goodness for insurance) - but not always available where you are - so travel to treatment facilities becomes a huge issue. Is it worth traveling to get treatment which might be quite debilitating but has a chance of meaningful life extension, but also has a larger chance of not working and you end up in your final days away from loved ones in a lousy condition?
2. Duration of condition - whether it's long-term (a marathon) or short-term (a sprint). The physical and mental toll of caring for someone over the long haul is huge. It becomes all consuming. It's hard to pace yourself, because you are responding to the crises de jour - which is largely outside your control. Adopting a long term mindset helps, as does building your own support network and not being afraid to reach out and ask others to help. But there are some tasks and support which cannot be outsourced and it is simply necessary to have the emotional capacity and endurance to weather it long term.
3. Logistics - appointments and treatments - scheduling, travel to and fro, emotional support before and after, medication administration. Certainly technology helps - having all this on my iPhone with alerts is invaluable. You can make the best of plans though, including ones for yourself, and then have things change rapidly, which sets off a cascade of changes to the appointment diary and logistics arrangements. You just have to be flexible and expect the unexpected. You also have to be prepared to wait a lot.
4. Lack of independence. Even though the person affected is now dependent on you, it works the other way. You are tied to that person and lack independence yourself. Between work and caregiving, that may be all the life you have. It can sorely test your relationship and you can start to feel resentful. That's when its good to reflect that the person did not do this intentionally, that you are in the best position to provide the support you are giving, and that your sacrifice (which indeed it is) is the best gift you can offer your loved one.
5. Communication to others. It is quite challenging to navigate the relationship network about who the person affected wants to see versus who wants to see them. Deciding who communicates about the state of the disease and progression - and how much, while respecting the inherent dignity and needs of the person to make their own choices as they are able. Further - what if there are differences in how it is presented or understood between you and your loved one? You are not just balancing communication of facts, you are balancing emotional support and motivation.
6. Playing social secretary. It's not just about scheduling and helping the person while they figure out who to see and when. It's about making sure all the elements are considered - like need for downtime and rest. And capabilities versus desires. It's also about communicating with people who have their own agenda, and buffering the affected person. It's a thankless task and one you can get falsely blamed for gatekeeping or screening. But you have to suck it up so as not to burden the loved one.
7. Arranging in advance additional supportive care when the need comes to that point - either in home care, in home hospice or in a supportive care facility. Figuring out end of life considerations that the person might want if they haven't expressed that need previously - such as burial or cremation preferences and arrangements. How do you do the research without the other person thinking it's a foregone conclusion? (One answer - do the research on line before they wake up...and make the calls when they are in treatment or napping).
8. Making sure all administrative details are taken care of - will, medical care directives, power of attorney, discussion about Death with Dignity (legal in the State of Washington). Bringing up the issue is stressful, as are the conversations. You have to be ready to have the conversation at an appropriate moment and then memorialize it.
9. Taking care of yourself. Find an outlet for emotional expression. Therapy or close friends helps. Expect a lack of sleep due to worry and schedules being thrown off. It's important to find the time to exercise (even twenty minutes of in-home yoga, stretching and calisthenics works - even if you were a former gym rat or exercise junkie. You have to get over the notion that it's all or nothing - either I go to the yoga class or I don't. You do what you can when you can - get up and move) and eat well (get off sugar and white carbs). Avoid the temptation to get by long term on coffee and pastries or energy bars. Get a team to support you.
10. Trying to maintain life and the household as it was before. Let the little things slide. There is a temptation to try to keep other things as normal as possible while your life is upside down. Let the mess happen, it's unimportant in the scheme of things.
I realize there are lots more - but these strike me as large burdens. I have already written before about the huge emotional issues associated with the loss one has with the affected person - whether as spouse, parent, or other loved one. That is a burden unto itself - as you move from a co-equal, mutually reciprocal relationship to a caregiver relationship. And recognizing that the basis for the relationship changes because the person changes. This is perhaps the hardest burden of all.
1. Treatment decisions, especially if the person affected is incapable of making the decision on their own. It means you have to do the research, have the questions ready for the doctors, and then help the person affected understand as much as they can and make as much of the decision as they can. In many situations involving life ending diseases or natural end of life conditions - there are a number of options with different consequences. Balancing quality of life with treatment impacts is challenging. Especially because humans are remarkably resilient and can surprise with their ability to bounce back from dips. And the technology is evolving rapidly - end of life and cutting edge life extension treatments can be enormously expensive (thank goodness for insurance) - but not always available where you are - so travel to treatment facilities becomes a huge issue. Is it worth traveling to get treatment which might be quite debilitating but has a chance of meaningful life extension, but also has a larger chance of not working and you end up in your final days away from loved ones in a lousy condition?
2. Duration of condition - whether it's long-term (a marathon) or short-term (a sprint). The physical and mental toll of caring for someone over the long haul is huge. It becomes all consuming. It's hard to pace yourself, because you are responding to the crises de jour - which is largely outside your control. Adopting a long term mindset helps, as does building your own support network and not being afraid to reach out and ask others to help. But there are some tasks and support which cannot be outsourced and it is simply necessary to have the emotional capacity and endurance to weather it long term.
3. Logistics - appointments and treatments - scheduling, travel to and fro, emotional support before and after, medication administration. Certainly technology helps - having all this on my iPhone with alerts is invaluable. You can make the best of plans though, including ones for yourself, and then have things change rapidly, which sets off a cascade of changes to the appointment diary and logistics arrangements. You just have to be flexible and expect the unexpected. You also have to be prepared to wait a lot.
4. Lack of independence. Even though the person affected is now dependent on you, it works the other way. You are tied to that person and lack independence yourself. Between work and caregiving, that may be all the life you have. It can sorely test your relationship and you can start to feel resentful. That's when its good to reflect that the person did not do this intentionally, that you are in the best position to provide the support you are giving, and that your sacrifice (which indeed it is) is the best gift you can offer your loved one.
5. Communication to others. It is quite challenging to navigate the relationship network about who the person affected wants to see versus who wants to see them. Deciding who communicates about the state of the disease and progression - and how much, while respecting the inherent dignity and needs of the person to make their own choices as they are able. Further - what if there are differences in how it is presented or understood between you and your loved one? You are not just balancing communication of facts, you are balancing emotional support and motivation.
6. Playing social secretary. It's not just about scheduling and helping the person while they figure out who to see and when. It's about making sure all the elements are considered - like need for downtime and rest. And capabilities versus desires. It's also about communicating with people who have their own agenda, and buffering the affected person. It's a thankless task and one you can get falsely blamed for gatekeeping or screening. But you have to suck it up so as not to burden the loved one.
7. Arranging in advance additional supportive care when the need comes to that point - either in home care, in home hospice or in a supportive care facility. Figuring out end of life considerations that the person might want if they haven't expressed that need previously - such as burial or cremation preferences and arrangements. How do you do the research without the other person thinking it's a foregone conclusion? (One answer - do the research on line before they wake up...and make the calls when they are in treatment or napping).
8. Making sure all administrative details are taken care of - will, medical care directives, power of attorney, discussion about Death with Dignity (legal in the State of Washington). Bringing up the issue is stressful, as are the conversations. You have to be ready to have the conversation at an appropriate moment and then memorialize it.
9. Taking care of yourself. Find an outlet for emotional expression. Therapy or close friends helps. Expect a lack of sleep due to worry and schedules being thrown off. It's important to find the time to exercise (even twenty minutes of in-home yoga, stretching and calisthenics works - even if you were a former gym rat or exercise junkie. You have to get over the notion that it's all or nothing - either I go to the yoga class or I don't. You do what you can when you can - get up and move) and eat well (get off sugar and white carbs). Avoid the temptation to get by long term on coffee and pastries or energy bars. Get a team to support you.
10. Trying to maintain life and the household as it was before. Let the little things slide. There is a temptation to try to keep other things as normal as possible while your life is upside down. Let the mess happen, it's unimportant in the scheme of things.
I realize there are lots more - but these strike me as large burdens. I have already written before about the huge emotional issues associated with the loss one has with the affected person - whether as spouse, parent, or other loved one. That is a burden unto itself - as you move from a co-equal, mutually reciprocal relationship to a caregiver relationship. And recognizing that the basis for the relationship changes because the person changes. This is perhaps the hardest burden of all.
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.
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.
Sunday, August 28, 2011
Identity...and Self Image
I wrote recently about the impacts of cancer on Meagan's identity. There was a quote from the book I read ("About Alice") about how the biggest impact of cancer is that it "robs you of your identity". With Meagan, mostly of late that seems to have centered around her mind and her abilities (to write, to read). She's been upset about her newfound state and worried about whether it's permanent or the temporary side effects of medication and treatment. It's so hard to say. Lately she has been more forgetful, and having a harder time tracking and understanding what she reads, and stringing consecutive coherent thoughts together. It seems to be in there - at least on the verbal part - she knows what she wants to say, often, but it comes out a bit off.
She had her Gamma knife radiation treatment of the two brain tumors a bit over two weeks ago. She wasn't supposed to have any side effects - but she did. The speech issues seem to have resolved (the slurring and inability to come up with the words quickly). But her cognitive ability seems to have declined steadily since then. It could be there was additional swelling, and it is having an impact, and it does take 2-3 weeks before any swelling resolves (according to Kaplan and Vermeulen). This is even though she is on steroids (an anti-inflammatory drug). She's been concerned that the new treatment (The Tomo therapy of the spine) is reaching her brain - but I've told her that is not the case - it is very concentrated and has no effect outside the beam area. So all I can do right now is try to assure her that it is likely a side effect of the past treatment, in combination with the drugs, and that it will likely resolve. But it is distressing. Last night she decided she needed more laughter in her life and instead of trying very hard to read and comprehend the book (again, part of her identity) but failing, she was going to start watching more of the videos we've picked up for her (such as the "I Love Lucy" series). It is a concession to the cancer, one she is not making willingly or lightly. But the effort to reward ratio is out of whack with the reading, and given what she is experiencing overall - it is probably a wise concession, at least until her comprehension capabilities return.
The other part that has been really tough of late is around her appearance. Really two areas - her hair and her weight. The radiation treatment has caused a loss of hair on the back of her head, and she has short hair elsewhere. She got a good look at it last week and was not at all happy. So the wig came back on. The good news is her hairdresser friend, Alicia, came over last night and colored her hair - returning it to its "natural" color. It also helped to de-accentuate the difference in the back between her scalp and the hair. So I think she will feel better about going "au naturale" - because frankly she looks darn cute with her pixie cut in the front and sides, and when you see the bald areas in the back - which includes her horseshoe scar from the craniotomy - it makes one realize you are seeing a cancer survivor and she should be proud about that.
The weight is a more profound and troubling thing for her. She's up at least ten pounds, which for her historically is a lot - outside of pregnancies she has weighed about 103 pounds as long as I've known her. It is clearly related to the steroids. But that is not very consoling. Especially given she is likely to be on them forever, and maybe at larger doses over time. She has had to pick up some new clothing, looser tops and larger and stretchier bottoms. That is hard psychologically. She sees her closet with clothes she likes but cannot wear. She is worried about when the weather changes and she needs to get some cooler weather clothes and can't go to the "petite" section anymore. Her self-image has always been around cute, form fitting clothing. This is the woman who got "best dressed" in high school her senior year! So it's another aspect of the cancer that affects one's psyche. I can tell her, and I do, until the cows come home, that she looks great, cute, and no one will know or care. But she knows, and also sees how her face is rounder and that the medications have caused the back of her neck to be a bit fattier as well. Last night she looked at her ankles and commented on how much they have gotten fatter. That is quite an overstatement - maybe a tiny bit - but she had pretty darn bird like legs to begin with...
I guess the point is - there are changes happening to her body which are not within her control and she doesn't like them because they affect her appearance. That deviation from self-image is another insult from cancer - on top of the brain insults. The cumulative impact of all these things adds up - making her more fragile emotionally, So there is a lot of shoring up that a cabana boy has to do, along with all her friends.
She had her Gamma knife radiation treatment of the two brain tumors a bit over two weeks ago. She wasn't supposed to have any side effects - but she did. The speech issues seem to have resolved (the slurring and inability to come up with the words quickly). But her cognitive ability seems to have declined steadily since then. It could be there was additional swelling, and it is having an impact, and it does take 2-3 weeks before any swelling resolves (according to Kaplan and Vermeulen). This is even though she is on steroids (an anti-inflammatory drug). She's been concerned that the new treatment (The Tomo therapy of the spine) is reaching her brain - but I've told her that is not the case - it is very concentrated and has no effect outside the beam area. So all I can do right now is try to assure her that it is likely a side effect of the past treatment, in combination with the drugs, and that it will likely resolve. But it is distressing. Last night she decided she needed more laughter in her life and instead of trying very hard to read and comprehend the book (again, part of her identity) but failing, she was going to start watching more of the videos we've picked up for her (such as the "I Love Lucy" series). It is a concession to the cancer, one she is not making willingly or lightly. But the effort to reward ratio is out of whack with the reading, and given what she is experiencing overall - it is probably a wise concession, at least until her comprehension capabilities return.
The other part that has been really tough of late is around her appearance. Really two areas - her hair and her weight. The radiation treatment has caused a loss of hair on the back of her head, and she has short hair elsewhere. She got a good look at it last week and was not at all happy. So the wig came back on. The good news is her hairdresser friend, Alicia, came over last night and colored her hair - returning it to its "natural" color. It also helped to de-accentuate the difference in the back between her scalp and the hair. So I think she will feel better about going "au naturale" - because frankly she looks darn cute with her pixie cut in the front and sides, and when you see the bald areas in the back - which includes her horseshoe scar from the craniotomy - it makes one realize you are seeing a cancer survivor and she should be proud about that.
The weight is a more profound and troubling thing for her. She's up at least ten pounds, which for her historically is a lot - outside of pregnancies she has weighed about 103 pounds as long as I've known her. It is clearly related to the steroids. But that is not very consoling. Especially given she is likely to be on them forever, and maybe at larger doses over time. She has had to pick up some new clothing, looser tops and larger and stretchier bottoms. That is hard psychologically. She sees her closet with clothes she likes but cannot wear. She is worried about when the weather changes and she needs to get some cooler weather clothes and can't go to the "petite" section anymore. Her self-image has always been around cute, form fitting clothing. This is the woman who got "best dressed" in high school her senior year! So it's another aspect of the cancer that affects one's psyche. I can tell her, and I do, until the cows come home, that she looks great, cute, and no one will know or care. But she knows, and also sees how her face is rounder and that the medications have caused the back of her neck to be a bit fattier as well. Last night she looked at her ankles and commented on how much they have gotten fatter. That is quite an overstatement - maybe a tiny bit - but she had pretty darn bird like legs to begin with...
I guess the point is - there are changes happening to her body which are not within her control and she doesn't like them because they affect her appearance. That deviation from self-image is another insult from cancer - on top of the brain insults. The cumulative impact of all these things adds up - making her more fragile emotionally, So there is a lot of shoring up that a cabana boy has to do, along with all her 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.
Wednesday, August 24, 2011
Meagan's Latest Update - The Day Before Spine Radiation Starts
Dear All,
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
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.
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