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.
Showing posts with label caregiver support. Show all posts
Showing posts with label caregiver support. Show all posts
Thursday, September 22, 2011
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, 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.
Wednesday, August 3, 2011
Direct Note from Meagan regarding the latest scans
Dear All,
I hope this note finds you all well and settling into the restful days of summer. It is hard to believe that if I close my eyes, and concentrate just a little, I can almost feel that coming hint of fall in the early morning air. It certainly is not a "knock you out" obvious sort of reminder that autumn is around the corner but more a gentle reminder that, like the seasons, Time marches on. It's really a lovely thing.
Well, as most of you know, Nick and I met with our dear Kaplan today and found out the results of our latest brain scan. Though the brain tumors that were removed and zapped two months ago have disappeared others have since grown. They are small, yet do need to be dealt with so our next step is to meet again with Dr. Vermeulan and develop a plan which will likely include gamma knife radiation which will allow for a more controlled approach than the total whole brain radiation (though this could come next if the results are still less than what Kaplan feels is still worth trying). We will set up an app. with Vermeulan and come up with our plan and expect to have a treatment next week (thank god, for my wig "Audrey"). The treatment should be painless though leave me muddled again for a few days. Other than that, the side effects are not bad. We will cross our fingers that this treatment, with the chemo, has some impact. What we do know now is that we still continue to hope to buy time. It is a tough road however as each opportunity for the tumor to be blasted is met now with a corresponding tumor growth response multiple fold. Two months ago we were dealing with two brain tumors, though those are toast, now we are dealing with 5 more smaller ones. The hardest news to share is that, though nothing is cast in stone, is appearing like my quirky life expectancy has been adjusted to about 2 to 6 months. Please trust that I share this with you all not to drum up a whirlwind of sympathy or onslaught of busy bee activity, but rather I hope to just share with you the profoundness of this time and the gratitude I feel to be "awake" to my great good fortune at all. Granted, a lot of this just sucks! A lot of it is such a magnificent surprise! But I hope with practice and concentration and acceptance, I...we...will find a way to find the profound and quiet beauty in many of the shared moments to come. You have all made my life so much for lovely and worth living. You have all made me feel deeply cherished, incredibly loved, especially appreciated and sometimes even funny. ~smile~ Thank you for all of that.
As before, I will be keeping my correspondences primarily via email. It is easier to keep communiques sorted and I can manage them as i have time and not feel totally overwhelmed. I will try to answer all I can, as I can. I do promise to keep you all in my thoughts and send waves of love to everyone of you for your support over the months. My family could not have managed as well without your care and the amazing attention you have shown each other as well. I am so deeply grateful. And thank you too, to the most amazing husband/cabana boy and two incredible young men to call sons, a woman could ever ask for. xoxoxo Man, they have been on one heck of a journey 0f their own and they have risen to the surreal occasion with grace and courage. We are truly blessed.
So, onward...you will hear from me again. All our plans for the next few days have been canceled as we are rescheduling next week and the week after with Vermullen but rest assured we will slip a note in here and there.
Much, much love to you all,
Meagan Anne
I hope this note finds you all well and settling into the restful days of summer. It is hard to believe that if I close my eyes, and concentrate just a little, I can almost feel that coming hint of fall in the early morning air. It certainly is not a "knock you out" obvious sort of reminder that autumn is around the corner but more a gentle reminder that, like the seasons, Time marches on. It's really a lovely thing.
Well, as most of you know, Nick and I met with our dear Kaplan today and found out the results of our latest brain scan. Though the brain tumors that were removed and zapped two months ago have disappeared others have since grown. They are small, yet do need to be dealt with so our next step is to meet again with Dr. Vermeulan and develop a plan which will likely include gamma knife radiation which will allow for a more controlled approach than the total whole brain radiation (though this could come next if the results are still less than what Kaplan feels is still worth trying). We will set up an app. with Vermeulan and come up with our plan and expect to have a treatment next week (thank god, for my wig "Audrey"). The treatment should be painless though leave me muddled again for a few days. Other than that, the side effects are not bad. We will cross our fingers that this treatment, with the chemo, has some impact. What we do know now is that we still continue to hope to buy time. It is a tough road however as each opportunity for the tumor to be blasted is met now with a corresponding tumor growth response multiple fold. Two months ago we were dealing with two brain tumors, though those are toast, now we are dealing with 5 more smaller ones. The hardest news to share is that, though nothing is cast in stone, is appearing like my quirky life expectancy has been adjusted to about 2 to 6 months. Please trust that I share this with you all not to drum up a whirlwind of sympathy or onslaught of busy bee activity, but rather I hope to just share with you the profoundness of this time and the gratitude I feel to be "awake" to my great good fortune at all. Granted, a lot of this just sucks! A lot of it is such a magnificent surprise! But I hope with practice and concentration and acceptance, I...we...will find a way to find the profound and quiet beauty in many of the shared moments to come. You have all made my life so much for lovely and worth living. You have all made me feel deeply cherished, incredibly loved, especially appreciated and sometimes even funny. ~smile~ Thank you for all of that.
As before, I will be keeping my correspondences primarily via email. It is easier to keep communiques sorted and I can manage them as i have time and not feel totally overwhelmed. I will try to answer all I can, as I can. I do promise to keep you all in my thoughts and send waves of love to everyone of you for your support over the months. My family could not have managed as well without your care and the amazing attention you have shown each other as well. I am so deeply grateful. And thank you too, to the most amazing husband/cabana boy and two incredible young men to call sons, a woman could ever ask for. xoxoxo Man, they have been on one heck of a journey 0f their own and they have risen to the surreal occasion with grace and courage. We are truly blessed.
So, onward...you will hear from me again. All our plans for the next few days have been canceled as we are rescheduling next week and the week after with Vermullen but rest assured we will slip a note in here and there.
Much, much love to you all,
Meagan Anne
Saturday, July 30, 2011
Reinforcements...
A spot of good news, our son Riley has returned from two weeks abroad visiting his girlfriend in Berlin. He had a wonderful time, but we missed him and I'm glad he's back for several reasons.
First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.
First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.
Sunday, July 24, 2011
Sun and Laughter - a good tonic
Thank you sun gods! Between that and a couple outings with friends which generated lots of laughter, today is a better day. It's kind of amazing how Meagan gets so nourished by meeting with people, and even though she can get teary about describing for them what her prognosis is and talking quite candidly about it, there is still a lot of focus on the hope for the good life remaining. And finding the joy and happiness of each day. It makes it a lot easier when you can be outside and surrounded by our beautiful garden and the antics of the dogs, squirrels, and birds. Or with good friends.
Since we are in a relatively good spot right now (with no new active impairment due to the disease), it does afford us the opportunity to stretch a bit. We set up our alarm system so she has a portable panic button that works anywhere in the house, so if I am not here for a short period of time, she can hit it and it will generate a call from the central station and if there is no response they dispatch the paramedics. So I may be able to sneak out for a quick ride or walk or run errands even if the boys are home, but asleep. It helps her confidence a bit also.
But I do kinda feel like we are waiting for the other shoe to drop. It may occur at the brain MRI results meeting on the 3rd. Or it may just show up when some part of her starts to feel differently.
In the meantime there are now more good days than bad. She is even able to laugh at her condition after the stroke. Often times she will want to talk about something to someone, but will be having a hard time remembering what it is she wants to say. So she will look to me and ask me what she wants to say. Now, I've gotten pretty good after 23 years at finishing her sentences, as many married couples can. But I am not a mind reader and it's pretty hard to be prescient and discern what it is that she wants to tell someone, without some sort of hint, to start her sentences. So we get a good chuckle out of that.
Since we are in a relatively good spot right now (with no new active impairment due to the disease), it does afford us the opportunity to stretch a bit. We set up our alarm system so she has a portable panic button that works anywhere in the house, so if I am not here for a short period of time, she can hit it and it will generate a call from the central station and if there is no response they dispatch the paramedics. So I may be able to sneak out for a quick ride or walk or run errands even if the boys are home, but asleep. It helps her confidence a bit also.
But I do kinda feel like we are waiting for the other shoe to drop. It may occur at the brain MRI results meeting on the 3rd. Or it may just show up when some part of her starts to feel differently.
In the meantime there are now more good days than bad. She is even able to laugh at her condition after the stroke. Often times she will want to talk about something to someone, but will be having a hard time remembering what it is she wants to say. So she will look to me and ask me what she wants to say. Now, I've gotten pretty good after 23 years at finishing her sentences, as many married couples can. But I am not a mind reader and it's pretty hard to be prescient and discern what it is that she wants to tell someone, without some sort of hint, to start her sentences. So we get a good chuckle out of that.
Tuesday, July 19, 2011
A part of the job...
There is one part of being a cabana boy for a stroke victim who has cancer that really bites. Regrettably, her memory is not what it used to be. So she forgets about the conversations we have had before - important conversations - with Kaplan, about her prognosis, and the (dwindled) options and consequences. So she will have a question, which inevitably leads to clarification, more questions (because she is having a harder time following things too), and getting into the deep end rather quickly. I then end up feeling like the bad guy because I am informing her of difficult things (which she has heard and processed before), which makes her emotional, and then of course that makes me emotional. So she gets traumatized, I get re-traumatized, and the whole thing is a mess. It happened again this morning. This is not the first time, nor will be the last. This is one part of the job I'd rather delegate to Kaplan and team entirely - but he is not available 24x7 or whenever the mood strikes her to dig into it. So I'm "it", and it bites.
Wednesday, July 13, 2011
Caregiver Guidelines
I read this article and even though it applies to the workplace, it also applies to "my workplace".
When it's a long march - you gotta take care of yourself...
http://blogs.hbr.org/schwartz/2011/07/is-the-life-youre-living-worth.html?cm_sp=most_widget-_-blog_posts-_-Is+the+Life+You%27re+Living+Worth+the+Price+You%27re+Paying+to+Live+It%3F
When it's a long march - you gotta take care of yourself...
http://blogs.hbr.org/schwartz/2011/07/is-the-life-youre-living-worth.html?cm_sp=most_widget-_-blog_posts-_-Is+the+Life+You%27re+Living+Worth+the+Price+You%27re+Paying+to+Live+It%3F
Tuesday, July 12, 2011
New Topics - Into Surreal Territory
One thing I would recommend to all healthy couples is that they have a discussion and write down what their wishes are for end of life issues and directions/wishes for after end of life with regard to burial, memorials, disposition of treasured articles etc. I'm not just talking about advance medical directives, durable powers of attorney in the event of incapacitation or wills. Those things are crucial and we had them done years ago and updated them regularly. So when Meagan was hospitalized not only did I have copies in our possession (and our attorney had the originals if needed) but I actually had him send me electronic files which I have on my iPhone. That proved pretty helpful when the nurses and docs asked me questions about things like "resuscitate or do not resuscitate". I was also much clearer on the things she had stipulated in advance and over which I had no decision making authority (do not feed, no artificial breathing support if comatose) versus those things I did once she was certified as being incapacitated. Fortunately I did not have to deal with any of those things and my hope is that I don't - that she will be competent and able to express her wishes to the very end, whenever that occurs.
But that does bring us to the things we have talked about that are out there, but feel so weird to talk about. What makes it weird is that for us, it could be much more imminent. So I would have liked to address these things while we were both healthy. Because addressing them now, as necessary as it is, makes it much more emotional, and for Meagan, that means an abundance of tears.
Some topics seem more ok than others, like how the end of days should look. That means for her: dignity, no pain, pretty, perfume, painted nails, friends and family, being out in our family room, not in an ICU or an isolated bedroom, flowers and watching her musicals. Others are a little more challenging - like burial or cremation, where, memorial, and disposition of treasured things. How to use her time, and prioritize it so everything gets done that she wants done, without it feeling rushed or signifying an imminent end become more emotional. Worrying about me and the boys, and how we will get by and move on and what that looks like generates lots of tears. But at least through all this - she does get to express her wishes and I know how she wants it done, and what influences she wants to have to the extent she is able from the great beyond.
But we have enough tough things to address on a daily basis - to add this all in - necessary as it is - definitely adds stress and emotion. We have gotten through most of it, so I can put it behind us now. But boy I wish we had done all this before.
But that does bring us to the things we have talked about that are out there, but feel so weird to talk about. What makes it weird is that for us, it could be much more imminent. So I would have liked to address these things while we were both healthy. Because addressing them now, as necessary as it is, makes it much more emotional, and for Meagan, that means an abundance of tears.
Some topics seem more ok than others, like how the end of days should look. That means for her: dignity, no pain, pretty, perfume, painted nails, friends and family, being out in our family room, not in an ICU or an isolated bedroom, flowers and watching her musicals. Others are a little more challenging - like burial or cremation, where, memorial, and disposition of treasured things. How to use her time, and prioritize it so everything gets done that she wants done, without it feeling rushed or signifying an imminent end become more emotional. Worrying about me and the boys, and how we will get by and move on and what that looks like generates lots of tears. But at least through all this - she does get to express her wishes and I know how she wants it done, and what influences she wants to have to the extent she is able from the great beyond.
But we have enough tough things to address on a daily basis - to add this all in - necessary as it is - definitely adds stress and emotion. We have gotten through most of it, so I can put it behind us now. But boy I wish we had done all this before.
Thursday, July 7, 2011
Can't get much more eloquent than this...
Dear Loved Ones,
I hope this finds you all well and settling into the lazy days of summer. This is such a wonderful time when life feels expansive and we stretch beyond our cozy in door routines to embrace new travels and adventures. Somehow our lives feel lighter and more on the cusp of such a wide array of possibility. Quite exciting time. ~smile~ I am taking this time to pass along some tough news and am going to trust that you all will find a way to accept and support each other. After meeting with Kaplan yesterday, it is looking very likely that the odds of coming out of this health challenge on the other side is relatively slim. After profound discussions with my family, we are committed to keeping open minds while still acknowledging odds of a lengthy survival are not good. As a result, our focus will likely will shift to the importance of quality of life. My men and I are all on the same page on this one. We don't know what kind of timing we are talking about. I continue to feel good and strong while still acknowledging subtle little changes that indicate my condition continues to progress.
Today, I start a low dose of chemo. Expectations regarding efficacy are low but can buy some time. It would be wonderful to share another holiday with you all and just move through a full year appreciative of every moment and opportunity to express my love and gratitude to you all for supporting me in building a life well lived. Thank you so so much. As we move forward, it is my intention to quiet my schedule down a little in order to find time to write in the journals I started for the kids years ago, to spend meaningful moments with my close friends and family, sit in wonder and appreciation at our great good fortune, and savor all the meaningfulness that is possible. I have visions of this being a profound and meaningful, nourishing and positive time. I hope it is not defined as primarily sad but glorious and reflective of a life well lived. ~smile~with sparkles, and colours and hearty laughter accompanied with big hugs where that squeeze is hearty and cannot be confused with a polite brush but wussy brush agains the cheek. Really squeeze. I'm giving you permission.
So, that's that. It is my intention to keep my appointments that are already on the calendar yet ease back after that. I am not going pack my days and social calendar as I have in the past but know that I carry each of you with gratitude in my heart and truly appreciate and love what each of you has contributed to my family's journey. I will try to keep in touch via email but will likely keep the visits down. The love meter stays high, though. ~smile~
Thank you, thank you, thank you all. One woman could not ask for more wonderful and live sustaining friends and family. You've helped make this a journey I wouldn't trade for the world. ~smile~
So much love to you all,
With so much love,
Meagan
I hope this finds you all well and settling into the lazy days of summer. This is such a wonderful time when life feels expansive and we stretch beyond our cozy in door routines to embrace new travels and adventures. Somehow our lives feel lighter and more on the cusp of such a wide array of possibility. Quite exciting time. ~smile~ I am taking this time to pass along some tough news and am going to trust that you all will find a way to accept and support each other. After meeting with Kaplan yesterday, it is looking very likely that the odds of coming out of this health challenge on the other side is relatively slim. After profound discussions with my family, we are committed to keeping open minds while still acknowledging odds of a lengthy survival are not good. As a result, our focus will likely will shift to the importance of quality of life. My men and I are all on the same page on this one. We don't know what kind of timing we are talking about. I continue to feel good and strong while still acknowledging subtle little changes that indicate my condition continues to progress.
Today, I start a low dose of chemo. Expectations regarding efficacy are low but can buy some time. It would be wonderful to share another holiday with you all and just move through a full year appreciative of every moment and opportunity to express my love and gratitude to you all for supporting me in building a life well lived. Thank you so so much. As we move forward, it is my intention to quiet my schedule down a little in order to find time to write in the journals I started for the kids years ago, to spend meaningful moments with my close friends and family, sit in wonder and appreciation at our great good fortune, and savor all the meaningfulness that is possible. I have visions of this being a profound and meaningful, nourishing and positive time. I hope it is not defined as primarily sad but glorious and reflective of a life well lived. ~smile~with sparkles, and colours and hearty laughter accompanied with big hugs where that squeeze is hearty and cannot be confused with a polite brush but wussy brush agains the cheek. Really squeeze. I'm giving you permission.
So, that's that. It is my intention to keep my appointments that are already on the calendar yet ease back after that. I am not going pack my days and social calendar as I have in the past but know that I carry each of you with gratitude in my heart and truly appreciate and love what each of you has contributed to my family's journey. I will try to keep in touch via email but will likely keep the visits down. The love meter stays high, though. ~smile~
Thank you, thank you, thank you all. One woman could not ask for more wonderful and live sustaining friends and family. You've helped make this a journey I wouldn't trade for the world. ~smile~
So much love to you all,
With so much love,
Meagan
Saturday, June 4, 2011
The Four Things That Matter Most
I'm reading a short book with the title, "The Four Things That Matter Most", by Ira Byock, M.D.
The Four Things are words one should say, really at any time within our life, to anyone we care about:
Please forgive me
I forgive you
Thank you
I love you
There is a short passage in it that really struck me, so much so I thought I'd share it:
"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".
The Four Things are words one should say, really at any time within our life, to anyone we care about:
Please forgive me
I forgive you
Thank you
I love you
There is a short passage in it that really struck me, so much so I thought I'd share it:
"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".
Sunday, May 22, 2011
Guess Who is Tired (Again) This Morning...
I've pretty much gotten used to not getting much sleep. Whether from anxiety or the hospital stay or our pill schedule or road trips I've taken recently - a solid through the night sleep is so rare an event I can't remember when it last occurred. So most days I need to do a power nap at some point - hardly full compensation - but helpful and I am oh so grateful that I have the freedom and flexibility to pull it off.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
Friday, May 20, 2011
The Things I Can't (yet) Write About
I'm writing about most of the things connected to this cancer. Including the transformation of being a caregiver for a cancer victim to now additionally a caregiver for a stroke victim. As an aside, the stroke in some weird ways has been helpful, which I will describe below.
But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.
Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.
The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.
The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.
Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????
But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.
Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.
The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.
The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.
Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????
Thursday, May 5, 2011
Next Up
Meagan's sodium levels have stabilized and Dr. Kaplan has cut her dosage of salt tabs in half. We'll keep it up until the current prescription is empty, likely by middle of next week. She continues to enjoy Fritos, potato chips, corn flakes and high protein Odwalla drinks (they are laden with sodium). Overall her appetite is great, thanks in large part to the delicious meals being provided by the Faeries, for which we are very grateful.
Monday, April 25, 2011
Sunday, April 24, 2011
New Duties, New Blog Title
I guess it was not enough to be a cancer cabana boy. I thought that was a pretty worthy challenge. It was a knee buckler at times, but the work was steady and the client great, even though the pay was lousy.
But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.
But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.
Sunday, April 3, 2011
Belief vs. Hope
One of the biggest challenges we face aside from managing the disease directly is maintaining emotional equilibrium. We all (by we I mean all of in the nuclear family) support each other in various ways. It's pretty clear Meagan relies on your truly, her cabana boy, for strong emotional support, along with incredible support from her posse of friends and family. As her pillow partner though, I often get questions that others don't - especially in those times when she is feeling scared and vulnerable. Recently, one of the most difficult questions she asked was, "do you really believe I am going to make it?".
Friday, February 11, 2011
What about the nurses?
We are so grateful for our oncologist, Hank Kaplan. He's a perfect match and foil for Megan. Of course he's fallen for her, as most do. Most visits are 2 hug/1-2 high five visits. They have a nice repartee' even when talking about difficult issues and choices. But we are also very grateful for our oncology research nurse, Barry, and all the other nurses at Swedish, including the one who had to give Meagan the 30 second shot in the butt.
Sunday, February 6, 2011
No Cancer After 5
Once you have a metastatic cancer (Stage 4 - meaning it has spread and can only be eliminated by systemic treatment - i.e., whole body chemotherapy or biological therapy - not spot treatment such as surgical removal or radiation of a tumor), especially one like melanoma that does not have a reliable and relatively predictable treatment path to being NED (no evidence of disease), cancer does sort of become a 24x7, 7 day a week discussion. It may be a discussion in your own head, it may be in your dreams, or it may be between the two of you. As a cabana boy, it is constantly on my mind. I mean, I worry about other things too, like the boys. Life goes on, you still have to pay the bills and pick up dog poop. But it's never away from your mind. When I'm with Meagan it often becomes a topic - spoken or unspoken. Even the amazing rituals we have adopted, like our matcha tea in the morning, as lovely as they are, have a root cause in the cancer.
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