We meet with Dr Kaplan at 9:20am. First she has her regular blood draw. Based on the results, we go in one of two directions. If her blood counts are normal she will likely start chemotherapy - maybe today or maybe tomorrow. It is the only thing she has left to try that might slow or stop the cancer - she knows it is a slim chance, but at least it is something. If her blood counts are low, it means she can't do the chemo. That means there is no chance of slowing or stopping the cancer and it is just a question of "if, not when". That is a hard message to hear. Moreover it means that something is going on to cause those low blood counts, something not good. If blood counts are low, the explanation could be the cancer is in her liver or bone marrow. Whatever it is, it means the process is accelerating. Again, not a good message to hear. So it's likely going to be an emotional morning. We also have all the other issues to address which are not about systemic treatment - but tumor management. And of course the looming brain MRI next week.
It definitely is a mixed bag to have days like this. Uncertainty is unsettling, and getting the information allows you to understand where you are and adjust and plan accordingly, instead of speculating and dealing with a wide range of scenarios. But if the information is not good, or closes out desirable options (kind of ironic that poisoning your body with chemicals would be considered a good option) it sends you down a path you'd rather not take - and you have to deal with the negative consequences.
Showing posts with label living with cancer. Show all posts
Showing posts with label living with cancer. Show all posts
Thursday, October 20, 2011
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.
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.
Monday, August 15, 2011
The Bookend Emotional Life
The thing about being a cabana boy is that you work a split shift when it comes to emotional support. That's not quite true, but fairly close.
The duties of a cabana boy in general are not quite 24x7, but in my case about 18x7. Aside from the emotional support, there is all the logistics support (appointments, pills, managing household, etc.), medical management (learning, interpreting, explaining, counseling), and, in the case of a stroke victim, accompanying her or chauffeuring her everywhere. Then there are those precious hours when I'm awake and she is not when I can do the worrying and thinking - about how to deal with all the future scenarios.
There is one aspect though that is difficult - that split shift emotional support. During the day, when Meagan gets going, she doesn't want to think about the disease. She wants to get done the things she needs to get done and be as functional as she can be. Sure, there are times when the emotions well up and as the cabana boy you need to be there. But they usually aren't deep and usually short duration.
But there are two times when it can get both deep and long. One is in the morning, when she's had time to sleep on it, and wakes with newfound thoughts and wants to discuss them over coffee. But they are of a particular category - more about understanding the disease progression, or balancing seeing friends and the things she wants to get done, or how she needs to prepare herself or think about the disease so she can function. It is an emotional time, but it has a certain quality and is usually linked to some activity, idea, or status.
But bedtime is another story entirely. She has been able to hold check on the deeper emotions throughout the better part of the day. Even though she has engaged in activities or been exposed to information that trigger emotional reactions. So when her head hits the pillow, it's not time to sleep, its time to let loose the pent up emotions. Now as a cabana boy, you've already put in a 17 hour day and are probably pretty exhausted. So when your head hits the pillow, you are thinking sleep. Uh uh. Your most difficult hour is about to begin.
In the early stages of the disease, besides comfort and reassurance, there was always the possibility of providing optimism and hope. About the new research, new drugs, treatments yet to come. At this stage of the disease, when we are pretty much at the end of the rope, and moving from incurable but treatable to incurable and not treatable - there is not much optimism and hope on offer. The best that can be provided is to focus on the quality of the remaining life and focusing each day on that. But that message really doesn't carry the day. So you are left with the comfort part, while she and you, express the emotions associated with the cruel realities of where she is. It is by far the hardest part of being a cabana boy, and comes at the hardest part of the shift.
The duties of a cabana boy in general are not quite 24x7, but in my case about 18x7. Aside from the emotional support, there is all the logistics support (appointments, pills, managing household, etc.), medical management (learning, interpreting, explaining, counseling), and, in the case of a stroke victim, accompanying her or chauffeuring her everywhere. Then there are those precious hours when I'm awake and she is not when I can do the worrying and thinking - about how to deal with all the future scenarios.
There is one aspect though that is difficult - that split shift emotional support. During the day, when Meagan gets going, she doesn't want to think about the disease. She wants to get done the things she needs to get done and be as functional as she can be. Sure, there are times when the emotions well up and as the cabana boy you need to be there. But they usually aren't deep and usually short duration.
But there are two times when it can get both deep and long. One is in the morning, when she's had time to sleep on it, and wakes with newfound thoughts and wants to discuss them over coffee. But they are of a particular category - more about understanding the disease progression, or balancing seeing friends and the things she wants to get done, or how she needs to prepare herself or think about the disease so she can function. It is an emotional time, but it has a certain quality and is usually linked to some activity, idea, or status.
But bedtime is another story entirely. She has been able to hold check on the deeper emotions throughout the better part of the day. Even though she has engaged in activities or been exposed to information that trigger emotional reactions. So when her head hits the pillow, it's not time to sleep, its time to let loose the pent up emotions. Now as a cabana boy, you've already put in a 17 hour day and are probably pretty exhausted. So when your head hits the pillow, you are thinking sleep. Uh uh. Your most difficult hour is about to begin.
In the early stages of the disease, besides comfort and reassurance, there was always the possibility of providing optimism and hope. About the new research, new drugs, treatments yet to come. At this stage of the disease, when we are pretty much at the end of the rope, and moving from incurable but treatable to incurable and not treatable - there is not much optimism and hope on offer. The best that can be provided is to focus on the quality of the remaining life and focusing each day on that. But that message really doesn't carry the day. So you are left with the comfort part, while she and you, express the emotions associated with the cruel realities of where she is. It is by far the hardest part of being a cabana boy, and comes at the hardest part of the shift.
Monday, August 8, 2011
Trying to give her a bit of independence today
Meagan is feeling a little constrained by the need to have someone around her at all times. She is normally quite sensitive to being an imposition on anyone, and even the fact that she can't drive and needs someone to shuttle her makes her uneasy. She also clearly needs someone to cross the street with her, so she can't walk alone; she's prone to stepping off the curb without paying attention or being able to see cars coming.
So today we are going to try something different. After I drive her to an appointment and wait for her for an hour, we are then going to drive to University Village. I am then going to drop her off, probably at the Barnes and Noble. Then I'll park and find a different place to hang out. That way she can get the run of the Village pretty safely, read, wander, get coffee, window shop, whatever she wants to do. But she will know I am close by and available to get her in a heartbeat. Mentally she just wants to feel normal and this could be a good way to do that. If it works, we'll do it regularly.
So today we are going to try something different. After I drive her to an appointment and wait for her for an hour, we are then going to drive to University Village. I am then going to drop her off, probably at the Barnes and Noble. Then I'll park and find a different place to hang out. That way she can get the run of the Village pretty safely, read, wander, get coffee, window shop, whatever she wants to do. But she will know I am close by and available to get her in a heartbeat. Mentally she just wants to feel normal and this could be a good way to do that. If it works, we'll do it regularly.
Tuesday, July 12, 2011
New Territory
We are definitely on new ground, and it's pretty shaky.
There is definite frustration on Meagan's part - about not wanting to be a problem. It's quite heart wrenching at times - she knows she doesn't have her full, usual faculties, and maybe won't ever again, but knows enough to remember what it was like. She does not like being loopy or forgetful. But because she forgets, she does have to ask a lot of questions and/or repetitive questions, or the same questions on successive days - it can make the responder a bit impatient. If the questions are particularly sensitive for one of the boys - it can be even more challenging as they probably didn't want to answer it the first time let alone the second. I think we've all upped our patience level, me by an exponential factor - but we aren't perfect and sometimes it shows. Meagan still retains her highly attuned sense of people's emotional state, so she senses when we are frustrated or impatient with her (and sometimes doesn't know why, so when we have to explain it's like being asked the same thing a third time...) and that upsets her because she doesn't want to be a problem.
I've actually encouraged her to not ask the boys so many questions - as is her usual style to draw them out (or anyone else for that matter) and talk more about herself. This is hard for her too - it's not something she is accustomed to doing. But it seems to me it will produce less tension than a repetitive inquisition approach with the boys. As for me - I just need to keep doing hot yoga and exercise and relax. Yesterday, after I drove her to her therapist's appointment we had a few errands to run and I thought we we had a list and I thought we were going to swoop in and swoop out. Well, we got to one place where we had two items to get, but she lost the list and couldn't find it. I knew the first thing and got it, but didn't ever see the list so didn't know what was on it. She couldn't remember. So her strategy was to wander each aisle until she discovered what she needed. What I should have done was gotten out my iPhone and read the news and played Scrabble until she figured it out. Instead I tried to be helpful (not!) by wandering with her after a bit trying to prod her about what it might be. My agenda was getting out of there - hers was about discovery. Different expectations equals frustration on both sides.
So we agreed later (after a teary and emotional conversation - which most are after things like this - the meds still affect her a lot) - set expectation, make sure we have the list if we are going together, and because she can't drive and I need to do the errands and she is with me, we can't always do it my way. Browsing and shopping without an agenda is in her blood and I have to respect that and give her the opportunity to do that - or let her explore that need with someone else!
There is definite frustration on Meagan's part - about not wanting to be a problem. It's quite heart wrenching at times - she knows she doesn't have her full, usual faculties, and maybe won't ever again, but knows enough to remember what it was like. She does not like being loopy or forgetful. But because she forgets, she does have to ask a lot of questions and/or repetitive questions, or the same questions on successive days - it can make the responder a bit impatient. If the questions are particularly sensitive for one of the boys - it can be even more challenging as they probably didn't want to answer it the first time let alone the second. I think we've all upped our patience level, me by an exponential factor - but we aren't perfect and sometimes it shows. Meagan still retains her highly attuned sense of people's emotional state, so she senses when we are frustrated or impatient with her (and sometimes doesn't know why, so when we have to explain it's like being asked the same thing a third time...) and that upsets her because she doesn't want to be a problem.
I've actually encouraged her to not ask the boys so many questions - as is her usual style to draw them out (or anyone else for that matter) and talk more about herself. This is hard for her too - it's not something she is accustomed to doing. But it seems to me it will produce less tension than a repetitive inquisition approach with the boys. As for me - I just need to keep doing hot yoga and exercise and relax. Yesterday, after I drove her to her therapist's appointment we had a few errands to run and I thought we we had a list and I thought we were going to swoop in and swoop out. Well, we got to one place where we had two items to get, but she lost the list and couldn't find it. I knew the first thing and got it, but didn't ever see the list so didn't know what was on it. She couldn't remember. So her strategy was to wander each aisle until she discovered what she needed. What I should have done was gotten out my iPhone and read the news and played Scrabble until she figured it out. Instead I tried to be helpful (not!) by wandering with her after a bit trying to prod her about what it might be. My agenda was getting out of there - hers was about discovery. Different expectations equals frustration on both sides.
So we agreed later (after a teary and emotional conversation - which most are after things like this - the meds still affect her a lot) - set expectation, make sure we have the list if we are going together, and because she can't drive and I need to do the errands and she is with me, we can't always do it my way. Browsing and shopping without an agenda is in her blood and I have to respect that and give her the opportunity to do that - or let her explore that need with someone else!
Saturday, May 21, 2011
Just When I thought It Was Safe....
Right before I made the matcha tea this morning - I heard a slightly different tone from Meagan. It appears she has been affected by someone's sad reaction to her "news" or the way she is and her "nonplussed" attitude may have gone away a bit. The brain damage that gave her an "all right brain" approach and no interest in discussing or considering disease progression may be on the mend.
"I'm not going to be around very long, am I?". How the hell do you answer that question? I did my cabana boy best - told her she is a person and not a statistic, that no matter what happens we are going to live each day in the moment and live it fully, that yes, she has a serious disease, but we all die sometime and the quality of your life is more important than the quantity, and that even if we knew she was going to die in a couple months we wouldn't change anything about our lives (it's not like we want to leave friends and family and jet off around the world), and even if Dr. Kaplan at some point says there is nothing more we can do, we'd have time to take care of the things needing taken care of.
She got teary of course. But we talked about it some more - not in great depth and a with a balance of hope and optimism, but tempered with the general knowledge of the seriousness of her disease - she doesn't want to get into the nitty gritty details. So it was a difficult situation (again) but at the end she seemed ok with where she stood and how she felt, and hasn't raised it again today or shown any evidence of thinking about it or it being a traumatic discussion. So maybe the good brain damage is still helping. But it's a fine line - she wants and deserves to have some hope. Yet there is the backdrop of being in the throes of a terrible battle - one now being waged on two fronts - the brain and the body (because the treatments for one don't affect the other) that may be larger than can be overcome.
I always feel terrible after these discussions, not just because of contemplating the future and possible negative scenarios. At some level I want to share with her everything I know about her disease (treatments, outcomes, probabilities, challenges) so that we are on the same intellectual plane, which will put us on equal footing from an emotional perspective. And make us partners once again. Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has (I do this partly from knowing her and what she wants and how she has explicitly said she doesn't want to focus there). By protecting her and softening the truth, it does make it better for her, I'm convinced. But then I've missed the opportunity. So I feel terrible because my internal conundrum is unresolved and I have to live as the one who sees it both ways.
The last thing I'll say for this post is that for those of you who read this, and interact with Meagan - do your best to be with Meagan fully and enjoy each and every moment and opportunity. Make it about life, and being positive and discussing and enjoying the experiences of the now. She's reading the paper, slowly. And is interested in the events of the day. And is always interested in your life and your relationship. But don't bring up the seriousness of the disease or issues around disease progression or outcomes. Because it's not about us, it's about her.
I can't remember which modern day philosopher said it (but I will attempt to paraphrase it while I butcher it in the process, but it was something I used with her this morning) but the gist of it is that humans are unique among creatures in their ability to essentially look down on themselves and see the span of time from the beginning of their life to the end. And we are unique in our ability to contemplate our own death. And it is that contemplation of death which sets us apart, but also gives us the knowledge and ability to appreciate and live fully the life we have now. We will all die someday - it's a question of "when", not a matter of "if". The measure of our life and the uniqueness we have is that ability to live each day fully knowing of our eventual demise. It's a bit harder for sure if you think that death may be closer than you really want. But it really shouldn't alter the way you live. Meagan is choosing, to the best of her ability, to live her life as fully as she can. I support that, and hope everyone else who comes in contact with her will as well.
"I'm not going to be around very long, am I?". How the hell do you answer that question? I did my cabana boy best - told her she is a person and not a statistic, that no matter what happens we are going to live each day in the moment and live it fully, that yes, she has a serious disease, but we all die sometime and the quality of your life is more important than the quantity, and that even if we knew she was going to die in a couple months we wouldn't change anything about our lives (it's not like we want to leave friends and family and jet off around the world), and even if Dr. Kaplan at some point says there is nothing more we can do, we'd have time to take care of the things needing taken care of.
She got teary of course. But we talked about it some more - not in great depth and a with a balance of hope and optimism, but tempered with the general knowledge of the seriousness of her disease - she doesn't want to get into the nitty gritty details. So it was a difficult situation (again) but at the end she seemed ok with where she stood and how she felt, and hasn't raised it again today or shown any evidence of thinking about it or it being a traumatic discussion. So maybe the good brain damage is still helping. But it's a fine line - she wants and deserves to have some hope. Yet there is the backdrop of being in the throes of a terrible battle - one now being waged on two fronts - the brain and the body (because the treatments for one don't affect the other) that may be larger than can be overcome.
I always feel terrible after these discussions, not just because of contemplating the future and possible negative scenarios. At some level I want to share with her everything I know about her disease (treatments, outcomes, probabilities, challenges) so that we are on the same intellectual plane, which will put us on equal footing from an emotional perspective. And make us partners once again. Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has (I do this partly from knowing her and what she wants and how she has explicitly said she doesn't want to focus there). By protecting her and softening the truth, it does make it better for her, I'm convinced. But then I've missed the opportunity. So I feel terrible because my internal conundrum is unresolved and I have to live as the one who sees it both ways.
The last thing I'll say for this post is that for those of you who read this, and interact with Meagan - do your best to be with Meagan fully and enjoy each and every moment and opportunity. Make it about life, and being positive and discussing and enjoying the experiences of the now. She's reading the paper, slowly. And is interested in the events of the day. And is always interested in your life and your relationship. But don't bring up the seriousness of the disease or issues around disease progression or outcomes. Because it's not about us, it's about her.
I can't remember which modern day philosopher said it (but I will attempt to paraphrase it while I butcher it in the process, but it was something I used with her this morning) but the gist of it is that humans are unique among creatures in their ability to essentially look down on themselves and see the span of time from the beginning of their life to the end. And we are unique in our ability to contemplate our own death. And it is that contemplation of death which sets us apart, but also gives us the knowledge and ability to appreciate and live fully the life we have now. We will all die someday - it's a question of "when", not a matter of "if". The measure of our life and the uniqueness we have is that ability to live each day fully knowing of our eventual demise. It's a bit harder for sure if you think that death may be closer than you really want. But it really shouldn't alter the way you live. Meagan is choosing, to the best of her ability, to live her life as fully as she can. I support that, and hope everyone else who comes in contact with her will as well.
Saturday, May 7, 2011
Not for the faint of heart
Next Tuesday we have our first visit with the neurology radiologist about the overall brain radiation plan. We know two things at this point - that she has remnants of the removed tumor which need to be addressed, plus another tumor in a different location. The technologies to address brain tumors have evolved remarkably over the last decade and using a technique of focused beam radiation, the neurology team (radiologist, physicist, neurosurgeon) uses a plan based on tumor(s) location which is able to radiate (and hopefully eliminate) identified tumors. There is usually an initial visit to discuss the scenario and plan and what is achievable (that is our Tuesday visit) followed by additional brain scans to get the latest tumor information, followed by the actual treatment (which involves realtime CT scans and MRIs and a sophisticated computer driven robotic arm delivering precise amounts of radiation in a broad field pattern to identified points using a pattern which causes very little impact to healthy brain matter but ends up concentrating on the identified area). Because this technique does impact the tumors and brain margin around them, there is swelling (this is bad), which they control through steroids. If you are on steroids though, you cannot proceed to a systemic treatment like Interleukin-2, because the steroids counteract the Interleukin-2. So you have to address the brain first, then once it is under control, move on to the systemic treatment.
Only read on if you want to read about outcomes, probabilities, and prognoses. Seriously. Now is the time to "close tab".
Only read on if you want to read about outcomes, probabilities, and prognoses. Seriously. Now is the time to "close tab".
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.
Friday, April 29, 2011
Rhythm Being Estabished
Things seem to be settling into some sort of rhythm and Meagan is improving steadily. Her speech is back to normal. Last night she ventured onto the computer to finish a movie. She then went to her email and with a little help from Casey and me was able to start deleting junk mail. Took a bit of repetition and reminder but she did it. She is moving around the house confidently and handling her own dressing and self-care. She walked around the block again yesterday and did some yoga with the occupational therapist.
Tuesday, April 26, 2011
Day One of Reahabilitation
Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.
Saturday, April 23, 2011
Friday Evening Update
Meagan is contentedly watching "When Harry Met Sally" on her laptop, snuggled in her hospital bed, wearing yoga clothes, with her cashmere shawl around her shoulders and her wool hat on. We enjoyed a hospital meal, although enjoy is not really the word I'd use. She is feeling quite good. She is very tired, overly tired due to the large number of assessments foisted on her by medical staff here. Most if it is all good, it sets the stage for therapy and insurance approval when they document her status. But it's tiring. And she discovers new things about herself - those insults to the brain. For example she has difficulty with numbers and dates. There are a litany of things about her which have changed, none of which are worth highlighting or listing. It seems too demeaning, and not focused on the positive aspects she retained. Many issues will resolve in time. She's still Meagan. We will pursue therapy actively, and are looking at options including a home based service. But she is tired of all the assessments and poking and prodding - she doesn't like to fail and when she misses something that competitive spirit comes out. And yet she is remarkably sanguine about it all. As Terry highlighted in her recap - she is approaching this whole thing in a very positive way. Over dinner I recounted the entire last two weeks and she has very little memory of it all. She is sick and tired of being here and wants to be home so she can kiss the dogs and be with Casey. But she will not leave with unpleasant thoughts about this experience or where she is right now.
We've talked about the process and game plan for her cancer which we will develop with Dr. Kaplan once she is discharged from Harborview. She is aware she has to undergo radiation treatment and then two weeks in the hospital on Interleukin 2. She is quite fine about it all. Timing is all uncertain - brain recovery has to occur first.
In terms of discharge we are eternally optimistic. Her sodium levels have recovered to the appropriate levels - now they just want to see them stable and have decreased the intervals in between checking. They are using an abundance of caution, which is fine. "Que sera sera". When she goes home we want it to be for good. We've convinced the medical staff that we are going home after medical discharge and will deal with therapy on an outpatient or in-home arrangement. We've cited the Meagan's Fairies network as one example of the fabulous support we have. So all the wheels are in motion for discharge, the neurology team just needs to give the go ahead. Her numbers tomorrow morning will likely dictate their decision. It could be tomorrow or Sunday or Monday. We will let the docs do their job and exercise their judgment and we will be fine either way. Tomorrow really is a day of rest for her - she did have over 5 assessments today and they are just draining. Stroke victims need their day rest!!
I am incredibly impressed and proud of her - I do not think I would be approaching this situation with the grace and optimism and joie de vivre she displays. I think you will all be quite relieved and happy when you have a chance to visit or talk with her. And that bad ass scar - wow that is one impressive momento.
Nick
Tuesday, April 5, 2011
As if we weren't dealing with enough....
Life goes on. As we continue on this cancer journey, characterized by its roller coaster ups and downs (hard) and duration (thankfully long) - we still have the kinds of things pop up in life which happen to others. And they are hard and stressful. So you have to build this reservoir of emotional strength to deal with those events as they arise, and we've got one on our hands now.
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?".
Tuesday, March 29, 2011
SNAFU
Everything got shifted back a day. When they called with the pre-scan instructions (what not to eat, when to stop eating, etc.) they indicated Meagan was only scheduled for a CT scan. We'd understood it was a PET/CT scan - which we want at this step. Of course the machine was booked so we couldn't just tack it on to our existing appointment. After a call to the oncologist's office and lots of juggling on their part, the scans are now Wednesday morning and the visit to oncologist is Thursday at 10:00. It's not a huge deal and we try to build a lot of slack into our schedule during weeks like this - for either excessive waits or emotional recovery. But atypically I had scheduled some things on Thursday which are a little harder to accommodate changing. Oh well, at least tonight we feast on at and protein (or at least Meagan does)! For PET scan days you can't eat carbs and sugars for 24 hours beforehand, nor can you exercise. We haven't been going to our formerly favorite restaurant - Café Lago - because of our new nutritional regimen. But tonight - we go for it - all the salami, cheese, nuts and olives she can eat!
Friday, March 25, 2011
Rough Patch
The last couple days have been pretty rough emotionally. Not so much related to the progression of the cancer, but as to how the family deals with it. Specifically, the emotional impact when outlook and emotional coping strategies vary.
Saturday, March 19, 2011
The Tension Builds
It's at about this time - ten days pre-scans - that the tension starts to build. Right now we are on an every other month PET/CT scan (insurance driven), which provides a bit more data than just a CT scan. The PET scan involves an infusion of radioactive sugar into your body and a device that measures the uptake of that radioactive sugar by cancer cells (cancer loves sugar). So you can really see where the cancer is, and unlike the CT scan which is just measuring tumor size, determine size and if a particular tumor is active or not.
Wednesday, February 16, 2011
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