Meagan has aways been a leading edge kind of person. Whether it be fashion (best dressed in high school) or design or relationships. She has redefined how I view relationships, bringing huge doses of warmth, energy and empathy to many. In our relationship she was always fearless, bringing up topics and issues she felt we had to address. Our house has been a canvas for her personal style and self-expression and her desire to break out of the mold. She has been passionate in her pursuit of family traditions and bringing as many people around her during the holidays as she could.
All this is context for ANOTHER ground-breaking discussion this morning. Talk about thin ice and unbroken ground. It caught me completely off-guard. We started talking about Thanksgiving and how we'd pull it off the way she wants, given her limitations. I reminded her of the volunteers who offered to help and not just participate. That led to a discussion about traditions and she talked about her dear departed grandma's cinnamon rolls on Christmas morning and how Meagan has made them in our household and she wanted to make them this year with my help, which I willingly agreed to do. Then the surreal hit.
She got very teary and started talking about and worrying about and becoming very sad about what would happen after she is gone. Would we (the boys and I) make her grandma's cinnamon rolls? Would we get rid of all the colorful furniture and buy brown Pottery Barn furniture? Would we paint our beautiful walls beige and white? Would we stop hosting (extended) family holiday celebrations? Et cetera.
Wow!
I understand at some level the concern - would we carry on traditions and retain her personal imprint on our house and in our lives so we continue to remember her and who she was. She's concerned we don't value her uniqueness and the special elements she has brought to our lives and that with her passing, we'd erase those, and end up erasing our memory of her.
Naturally, I reassured her as best I could, given I hadn't even thought about this. She admitted that the medications might be driving a lot of the emotion and thoughts. But it was a very poignant conversation and the deep fear and concern about carrying her legacy forward and remembering her was evident. I just need to add another element to my cabana boy duties - convincing this remarkable woman that she will never be forgotten and that her legacy and traditions will carry on.
Showing posts with label cancer support strategies. Show all posts
Showing posts with label cancer support strategies. Show all posts
Saturday, October 22, 2011
Sunday, September 25, 2011
A Difficult Morning
Meagan's knees are still pretty banged up from her falls ten days ago, and are causing a fair bit of pain. I think some of her walking this last week (we did the Greenlake loop on Wednesday, which is 2.8 miles) exacerbated the situation, so this morning we iced up the right one and she will take it easy today. But that is not the only problem. Her back is sore - we don't know if that is the result of the falls or an indicator of something else. It is not in the same location as the pain that led to the diagnosis of the spinal tumors. She also has an unusual pain and tingling and numbness in her right arm that runs from her wrist to her shoulder. This showed up a couple days ago - it's hard to believe it is fall-related. So net net, I am more than a little concerned that the spinal tumors are spreading and causing some nerve impingement leading to pain. For now, a couple ibuprofen work to ease it, but I am going to get her in to see Dr Kaplan tomorrow. It may be we have to accelerate the schedule for the spinal column CT scan.
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
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.
Saturday, August 27, 2011
Hurricane.....Meagan
Is it coincidental that on the day Irene hits the U.S. coast, we had a hurricane come ashore right here at home? I've written in the past about the mood swings which have hit her due to the medications, and the challenges she has when things are out of a certain zone. When your personal health is going through dramatic negative changes, and you get health news which swings you from one end of the emotional spectrum to another - it is not surprising there is a need for stability. We have tried to accomplish that - but it is not possible to simply freeze things. I try to cocoon her as much as possible and create the time and space for her to feel comfortable - such as not scheduling things too early so she can move at her own pace to get ready in the morning.
At our home, we now have two young adults living with us, which is a good thing. They have made personal sacrifices to be here with their mom during this time, and it has definitely changed the trajectory of their lives, not for the good. So we have tried to accomodate their needs for personal space, to make this the best living arrangement possible. Given we have a large enough house, it was a matter of changing the function of certain rooms, and one significant change was for Meagan to move her studio to what was my old office. That was difficult for her - although she understood and supported it - nonetheless emotionally it felt like a statement was being made about moving her on.
Over the last while we have been following through on some of our earlier decisions, and that has involved some minor construction. Even though we have a fantastic contractor, who she likes very much, it is still disruptive, noisy at times, and can occur at inconvenient times. Such as when you are going through one of your emotional valleys. So this morning, we had some work going on and it triggered a pretty dramatic response. Of course reiterating the logic of it all was not helpful. Our expressions of empathy fell on deaf ears. I suppose it is almost impossible for us to feel how she is feeling, when what she wants is stability and her space, her home as she knows it, but what she is getting is change. And change is very hard for her right now - because it is a portent of things to come in her mind - it represents something else.
Even after Riley made a brilliant argument to her about how these changes were all about family (and not about the cancer per se or prepping the space in any way for "after"), and being able to be together better, and have space he needs and some common space that is more conducive to family movie watching - even though she knows it is true, it was still too much. And we are guys - we just can't deliver what she needs at times - even though some of us are going pretty far beyond our comfort zones.
Even though we can empathize and bend over backwards to support her - we cannot freeze things. Change does happen. It should happen. It's frustrating for us when she gets out of sorts at previously agreed to matters - even though we know it's because she has forgotten or the context has changed for her. Because of her state of mind, it is hard for her to empathize the other direction - the cancer sort of trumps all. We get it. But it is frustrating and as much as I would like to be a saint - it isn't always possible.
Cancer sucks.
At our home, we now have two young adults living with us, which is a good thing. They have made personal sacrifices to be here with their mom during this time, and it has definitely changed the trajectory of their lives, not for the good. So we have tried to accomodate their needs for personal space, to make this the best living arrangement possible. Given we have a large enough house, it was a matter of changing the function of certain rooms, and one significant change was for Meagan to move her studio to what was my old office. That was difficult for her - although she understood and supported it - nonetheless emotionally it felt like a statement was being made about moving her on.
Over the last while we have been following through on some of our earlier decisions, and that has involved some minor construction. Even though we have a fantastic contractor, who she likes very much, it is still disruptive, noisy at times, and can occur at inconvenient times. Such as when you are going through one of your emotional valleys. So this morning, we had some work going on and it triggered a pretty dramatic response. Of course reiterating the logic of it all was not helpful. Our expressions of empathy fell on deaf ears. I suppose it is almost impossible for us to feel how she is feeling, when what she wants is stability and her space, her home as she knows it, but what she is getting is change. And change is very hard for her right now - because it is a portent of things to come in her mind - it represents something else.
Even after Riley made a brilliant argument to her about how these changes were all about family (and not about the cancer per se or prepping the space in any way for "after"), and being able to be together better, and have space he needs and some common space that is more conducive to family movie watching - even though she knows it is true, it was still too much. And we are guys - we just can't deliver what she needs at times - even though some of us are going pretty far beyond our comfort zones.
Even though we can empathize and bend over backwards to support her - we cannot freeze things. Change does happen. It should happen. It's frustrating for us when she gets out of sorts at previously agreed to matters - even though we know it's because she has forgotten or the context has changed for her. Because of her state of mind, it is hard for her to empathize the other direction - the cancer sort of trumps all. We get it. But it is frustrating and as much as I would like to be a saint - it isn't always possible.
Cancer sucks.
Tuesday, August 16, 2011
How is it that bad news is good news?
when it is better than the terrible news you were expecting.
Frankly, what Meagan expected going into today's visit with Dr. Kaplan was that she would have untreatable cancer in the spinal column and that her life expectancy was greatly diminished. We based this in part on the call we got last Thursday night from Dr. Kaplan giving us the preliminary results of the CT scan. He told me then, small tumors at the base of the spine - treatable with radiation, and tumors in her spinal column - untreatable.
When we got there today, his tune was a little different. Yes, there are small tumors at the base of her spine, thus causing the pain. We are heading to Swedish Radiology and they will be doing a Cyberknife radiation treatment of those. She has a detailed MRI tomorrow and then the "zappage" will follow. The hope is the radiation treatment shrinks the tumors and the pain goes away. That part we expected.
The part that is different is the identified tumors on her spinal column. Yes, those exist. They are distributed up and down the column in the epidural space. But they are not untreatable. Kaplan said he has a few other tools in the toolkit he can employ - in time. They are different chemo regimes that are direct infusions into the spinal column. But that can't happen until her brain calms down from her most recent brain radiation treatment, which was last Friday. The wait interval is 2-3 months. So for now, we watch and wait. And hope that the current chemo she is on, Temodar, has some effect. He also said those spinal tumors would not cause anything imminent. So that was a huge relief for Meagan. For two reasons. One, it gives her more time. Two, at least having some tools that can be tried is better than being able to do nothing.
What we learned is that it is really bad to have any expectations or to make predictions - especially about timelines. We don't know how the disease will continue to progress and present, and Kaplan would not and could not give us any indication of what might happen in the spinal column and when. The emotional roller coaster of having one set of expectations and then have a different outcome (even though positive) is completely draining. So after the meeting we agreed the most sane way to proceed - is to live it day to day, deal with the symptoms and treatments as they emerge, and don't get into predictions, prognoses or timelines. It isn't helpful and can be downright debilitating.
Frankly, what Meagan expected going into today's visit with Dr. Kaplan was that she would have untreatable cancer in the spinal column and that her life expectancy was greatly diminished. We based this in part on the call we got last Thursday night from Dr. Kaplan giving us the preliminary results of the CT scan. He told me then, small tumors at the base of the spine - treatable with radiation, and tumors in her spinal column - untreatable.
When we got there today, his tune was a little different. Yes, there are small tumors at the base of her spine, thus causing the pain. We are heading to Swedish Radiology and they will be doing a Cyberknife radiation treatment of those. She has a detailed MRI tomorrow and then the "zappage" will follow. The hope is the radiation treatment shrinks the tumors and the pain goes away. That part we expected.
The part that is different is the identified tumors on her spinal column. Yes, those exist. They are distributed up and down the column in the epidural space. But they are not untreatable. Kaplan said he has a few other tools in the toolkit he can employ - in time. They are different chemo regimes that are direct infusions into the spinal column. But that can't happen until her brain calms down from her most recent brain radiation treatment, which was last Friday. The wait interval is 2-3 months. So for now, we watch and wait. And hope that the current chemo she is on, Temodar, has some effect. He also said those spinal tumors would not cause anything imminent. So that was a huge relief for Meagan. For two reasons. One, it gives her more time. Two, at least having some tools that can be tried is better than being able to do nothing.
What we learned is that it is really bad to have any expectations or to make predictions - especially about timelines. We don't know how the disease will continue to progress and present, and Kaplan would not and could not give us any indication of what might happen in the spinal column and when. The emotional roller coaster of having one set of expectations and then have a different outcome (even though positive) is completely draining. So after the meeting we agreed the most sane way to proceed - is to live it day to day, deal with the symptoms and treatments as they emerge, and don't get into predictions, prognoses or timelines. It isn't helpful and can be downright debilitating.
D-Day
I believe that today we will find out the extent of the invasion of the cancer in Meagan's spinal column, and elsewhere. We have a meeting with Dr. Kaplan at 11am. He will have sufficient data to be be able to tell us where the disease is and what are the implications.
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
Sunday, August 14, 2011
Yesterday
She was a bit fuzzy all day, presumably an after effect of the radiation. She also had difficulty speaking, and although it got a bit better throughout the day, she still had to slow down and enunciate clearly and formulate her thoughts before talking. So the radiologist wasn't quite right when she said, no side effects from the Gamma knife brain radiation treatment....
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
Saturday, August 13, 2011
Post Treatment Reflections and thoughts on Meagan's letter
There is a big difference between getting about 5 1/2 hours sleep and almost 8 1/2 hours sleep. I feel quite a bit better today; yesterday, I was not so good. The day before a scan or treatment I am usually too hyped up to sleep much. So by 8pm last night I was yawning a lot. Meagan was tired too - even though she napped throughout most of the procedure yesterday and most of the afternoon. I'm glad it went well, obviously, now we just wait and see how long it takes before the radiation does its thing. The thing about radiation and melanoma is that there is about a 70% success rate of what they call "local control". That means in 30% of the cases the melanoma ducks the radiation and continues to grow. You always have the option at that point of hitting it again. But t's a tough beast and tends to be radiation resistant.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
Tuesday, August 9, 2011
It takes a Village
I mean this in two ways.
One, University Village worked well yesterday. Mild weather, lots of people, and Meagan wandered to her heart's content. I camped out in a nice spot and read and every once in a while she would cruise by and say hi, or I'd see her in the distance. After an hour we talked by phone (you have to call twice - her phone is in her purse and by the time she realizes it is her phone ringing and gets it out, it has already gone to voice mail. So you just call again right away because at that point it's in her hand). She then called me at 2:30pm to say she was tired and ready to come home - and also to rant about how disgusted she was with the book selection at Barnes and Noble - too much popular fiction trash and not enough literature. She now only wants to go to Elliott Bay Books or Third Place Books. And as it turned out, separately we both had the identical thing for lunch - I had walked over and gotten a frozen yogurt and later a cookie, and so had she. Funny how marriage does that to you...
The other reference to "it takes a Village" is to acknowledge the love and support from our extended network of friends and family. We simply could not do this journey without you. We are so appreciative of the meals provided three times a week through the sign ups at the Meagan's Fairy's website. It makes such a difference - for example last week, with the scan on Monday and the results on Wednesday, and Meagan being in shock Thursday to Saturday (no joke, I think it really was a form of shock) and me trying to support her - we were pretty incapable of pulling a meal together. So to have incredible food delivered is just so helpful. The only problem is our tupperware collection - it is out of control and we'd love for people to get theirs back!
Most of the time we welcome a knock and a short visit at delivery or pickup of dishware. But sometimes Meagan is wiped out and isn't up to a visit, so I'll let people know and keep it a front door exchange.
There are also all the other acts of kindness and support; the letters and cards, the walks, the invites to dinner, etc. There is a balance keeping the dance card full enough so she sees as many as she can (as she has indicated in her separate letters) and keeping her within the bounds of her capacities. That may change after Friday's Gamma knife treatment - hopefully not for long.
But truly, to our Village, a most heartfelt "thank you".
One, University Village worked well yesterday. Mild weather, lots of people, and Meagan wandered to her heart's content. I camped out in a nice spot and read and every once in a while she would cruise by and say hi, or I'd see her in the distance. After an hour we talked by phone (you have to call twice - her phone is in her purse and by the time she realizes it is her phone ringing and gets it out, it has already gone to voice mail. So you just call again right away because at that point it's in her hand). She then called me at 2:30pm to say she was tired and ready to come home - and also to rant about how disgusted she was with the book selection at Barnes and Noble - too much popular fiction trash and not enough literature. She now only wants to go to Elliott Bay Books or Third Place Books. And as it turned out, separately we both had the identical thing for lunch - I had walked over and gotten a frozen yogurt and later a cookie, and so had she. Funny how marriage does that to you...
The other reference to "it takes a Village" is to acknowledge the love and support from our extended network of friends and family. We simply could not do this journey without you. We are so appreciative of the meals provided three times a week through the sign ups at the Meagan's Fairy's website. It makes such a difference - for example last week, with the scan on Monday and the results on Wednesday, and Meagan being in shock Thursday to Saturday (no joke, I think it really was a form of shock) and me trying to support her - we were pretty incapable of pulling a meal together. So to have incredible food delivered is just so helpful. The only problem is our tupperware collection - it is out of control and we'd love for people to get theirs back!
Most of the time we welcome a knock and a short visit at delivery or pickup of dishware. But sometimes Meagan is wiped out and isn't up to a visit, so I'll let people know and keep it a front door exchange.
There are also all the other acts of kindness and support; the letters and cards, the walks, the invites to dinner, etc. There is a balance keeping the dance card full enough so she sees as many as she can (as she has indicated in her separate letters) and keeping her within the bounds of her capacities. That may change after Friday's Gamma knife treatment - hopefully not for long.
But truly, to our Village, a most heartfelt "thank you".
Wednesday, July 27, 2011
"Do you still love me?", and other (more difficult) questions...
Meagan has always had a propensity to ask piercing and incisive questions. She reads me like a book, and she reads books well. So my answers need to be damn good, or else I'm in big trouble.
In the past, since the discovery of the brain tumors and the stroke, she has asked tough questions such as, "am I going to make it?". There were periods of time where my answer had to be positive (even though I wasn't sure) because that was what she needed to hear - she needed the hope to keep going because she wasn't mentally ready for the more accurate answer ("probably not"). So it was a sort of kindness on my part to bend the truth, because the goal was to keep her positive and motivated. It wasn't to have a completely open and candid relationship as a couple - because the roles had changed and my job as cabana boy and spouse was to care for her. We also had at that time, some clinical trial options that had some very low percentage of success (success defined as complete remission rather than life extension of some duration). So I could point to those as reasons for my response.
After her seizures and the closing off of the clinical trial options, and the concern by Kaplan over the neurological issues associated with any attempt to use aggressive immune system treatments - information she was made aware of - it became more appropriate to lead her into the deeper water and give her the more accurate answer. At that point it was information she was better able to deal with, even though it comes with a measure of grief.
As time has rolled on, and she has experienced the side effects of treatment (the radiation of the brain, anti-seizure medications, chemotherapy), there have been some other questions. Not too long ago it was, "am I losing my mind?". Well, there is no question she is suffering from cognitive deficits. Some are long term and not going to return, like the numbers and dates and time capacity. Others, like her short term memory are more problematic. They have waxed and waned, lately more waxed. It could be the Temodar (chemo) kicking in, it could be delayed onset of the radiation as the healthy brain tissue in the margin area they got dies off, or it could be the medications in general. My response though was swift and sure as it needed to be and as is justified by the facts - "no, you are not losing your mind". I remind her of the brain's ability to rewire itself, remind her of the likely short term nature of the effects, and then remind her of all the aspects of her brain which are unaffected, such as her personality, her ability to have conversation, her capacity for empathy and love, and all the qualities of the mind she has which have endeared her to so many. Her inability to write beautifully is a pain in the ass and frustrates her, but I keep reassuring her it will return in time with practice as her brain re-learns. Of course she is still sharp enough to retort that she hopes it happens before she kicks the bucket (evidence of her capacity to think and warped sense of humor).
Yesterday she hit me between the eyes with two questions, one easy and one hard. The easy one was, "do you still love me". Of course I do, and I told her about the depth and breadth of my love for her and how that was a foundation unshaken by the events. The next question was a doozy. "Do you love me more than just as a wife?". I think what she was getting at here were reassurances she needed over things like appearance and attractiveness and the quality of the relationship that make a scintillating partnership.
She is obviously distraught over a lot of the physical changes. Notwithstanding "Audrey", her smashing new wig, underneath she has lost a lot of hair from the radiation. She's patchy and bald in places, along with the rest of her hair which is a buzz cut. Whether that is permanent or not is unknown. But women (and men) care about hair loss, and it is a self-perceived measure of her physical attractiveness. She has also put on some weight - some of it steroid driven, some of it because of her need after the stroke to eat high salt and fat foods - to prepare for what we thought would be a next difficult treatment. Her weight for 25 years has been around 103 pounds; she came out of the hospital weighing 93 pounds, and now at 111 pounds she is in treatment fighting condition and hardly overweight. But she notices the differences, has had to buy some new clothes which fit, and is not at all happy about the padding on her face. She has also had a lot of surgeries and has the scars to prove it; appearance altering badges of honor but she does see them. Lastly, as what one of our friend's terms her capacity for "aerobic worrying", she wants to still measure up as a good partner, one who can be interested and interesting, one who gives as much as she gets. And is still viewed as a hot mama by her beloved.
I'm no saint. Our relationship has changed. I am the caregiver and that definitely changes the relationship. It creates an imbalance in the relationship that isn't easily overcome, especially with cognitive deficits. In normal situations that is a temporary condition - but when you are dealing with a stroke victim, it can be forever. Especially in her case, with the medications she needs and the likelihood that forever isn't that long. And then in responding to the question, it goes back to earlier days, what is the answer she needs to hear and what would be a kindness and reassure her, especially given where she is in terms of emotional swings and fears of impending death and worries about her boys and just making it through each day and week ahead?
In so many ways my love has deepened and I told her that - her ability to cope with this disease with grace and style, her continuing ability to reach out and care for others and express her love, and her desire and ability to create meaning and joy in her life notwithstanding the prognosis. She has exhibited remarkable qualities and those are ones that make me love her more than just as a wife. But I kinda, sorta side-stepped the underlying real question and thankfully she didn't pursue it. I do think I will be spending more time talking about and reminding her of the good times we have had as a couple when we weren't in parenting mode or crisis or caretaker mode. Reminding her about why I have loved her as more than "just a wife". And continue to do so, although internally it's for different reasons.
Just another example of how cancer affects more than just the person with the disease...
In the past, since the discovery of the brain tumors and the stroke, she has asked tough questions such as, "am I going to make it?". There were periods of time where my answer had to be positive (even though I wasn't sure) because that was what she needed to hear - she needed the hope to keep going because she wasn't mentally ready for the more accurate answer ("probably not"). So it was a sort of kindness on my part to bend the truth, because the goal was to keep her positive and motivated. It wasn't to have a completely open and candid relationship as a couple - because the roles had changed and my job as cabana boy and spouse was to care for her. We also had at that time, some clinical trial options that had some very low percentage of success (success defined as complete remission rather than life extension of some duration). So I could point to those as reasons for my response.
After her seizures and the closing off of the clinical trial options, and the concern by Kaplan over the neurological issues associated with any attempt to use aggressive immune system treatments - information she was made aware of - it became more appropriate to lead her into the deeper water and give her the more accurate answer. At that point it was information she was better able to deal with, even though it comes with a measure of grief.
As time has rolled on, and she has experienced the side effects of treatment (the radiation of the brain, anti-seizure medications, chemotherapy), there have been some other questions. Not too long ago it was, "am I losing my mind?". Well, there is no question she is suffering from cognitive deficits. Some are long term and not going to return, like the numbers and dates and time capacity. Others, like her short term memory are more problematic. They have waxed and waned, lately more waxed. It could be the Temodar (chemo) kicking in, it could be delayed onset of the radiation as the healthy brain tissue in the margin area they got dies off, or it could be the medications in general. My response though was swift and sure as it needed to be and as is justified by the facts - "no, you are not losing your mind". I remind her of the brain's ability to rewire itself, remind her of the likely short term nature of the effects, and then remind her of all the aspects of her brain which are unaffected, such as her personality, her ability to have conversation, her capacity for empathy and love, and all the qualities of the mind she has which have endeared her to so many. Her inability to write beautifully is a pain in the ass and frustrates her, but I keep reassuring her it will return in time with practice as her brain re-learns. Of course she is still sharp enough to retort that she hopes it happens before she kicks the bucket (evidence of her capacity to think and warped sense of humor).
Yesterday she hit me between the eyes with two questions, one easy and one hard. The easy one was, "do you still love me". Of course I do, and I told her about the depth and breadth of my love for her and how that was a foundation unshaken by the events. The next question was a doozy. "Do you love me more than just as a wife?". I think what she was getting at here were reassurances she needed over things like appearance and attractiveness and the quality of the relationship that make a scintillating partnership.
She is obviously distraught over a lot of the physical changes. Notwithstanding "Audrey", her smashing new wig, underneath she has lost a lot of hair from the radiation. She's patchy and bald in places, along with the rest of her hair which is a buzz cut. Whether that is permanent or not is unknown. But women (and men) care about hair loss, and it is a self-perceived measure of her physical attractiveness. She has also put on some weight - some of it steroid driven, some of it because of her need after the stroke to eat high salt and fat foods - to prepare for what we thought would be a next difficult treatment. Her weight for 25 years has been around 103 pounds; she came out of the hospital weighing 93 pounds, and now at 111 pounds she is in treatment fighting condition and hardly overweight. But she notices the differences, has had to buy some new clothes which fit, and is not at all happy about the padding on her face. She has also had a lot of surgeries and has the scars to prove it; appearance altering badges of honor but she does see them. Lastly, as what one of our friend's terms her capacity for "aerobic worrying", she wants to still measure up as a good partner, one who can be interested and interesting, one who gives as much as she gets. And is still viewed as a hot mama by her beloved.
I'm no saint. Our relationship has changed. I am the caregiver and that definitely changes the relationship. It creates an imbalance in the relationship that isn't easily overcome, especially with cognitive deficits. In normal situations that is a temporary condition - but when you are dealing with a stroke victim, it can be forever. Especially in her case, with the medications she needs and the likelihood that forever isn't that long. And then in responding to the question, it goes back to earlier days, what is the answer she needs to hear and what would be a kindness and reassure her, especially given where she is in terms of emotional swings and fears of impending death and worries about her boys and just making it through each day and week ahead?
In so many ways my love has deepened and I told her that - her ability to cope with this disease with grace and style, her continuing ability to reach out and care for others and express her love, and her desire and ability to create meaning and joy in her life notwithstanding the prognosis. She has exhibited remarkable qualities and those are ones that make me love her more than just as a wife. But I kinda, sorta side-stepped the underlying real question and thankfully she didn't pursue it. I do think I will be spending more time talking about and reminding her of the good times we have had as a couple when we weren't in parenting mode or crisis or caretaker mode. Reminding her about why I have loved her as more than "just a wife". And continue to do so, although internally it's for different reasons.
Just another example of how cancer affects more than just the person with the disease...
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.
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
Friday, July 1, 2011
Reality Bites
The gravity of the situation is sinking in. We had a long family "discussion" last night. Suffice to say someone was pretty teary. Actually more than teary. The boys were incredible. The focus became more about how do you live each day with meaning, and make sure you do, say, instruct, and write everything you need to no matter how much time you have left. It's something we all should do, because you never know.
Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.
Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing), and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.
So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".
She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.
As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.
Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.
Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing), and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.
So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".
She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.
As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.
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.
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.
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?????
Tuesday, April 26, 2011
Day One of Rehab - a summary
One of the things I learned quickly today is that it is very easy to overtax Meagan. Especially when she is being asked to rewire neurons and learn new pathways to doing old activities. It was frustrating for her and just too much to have too many rehab people. That said, it really wasn't too much for a non-impaired person. But when you've received an insult to the brain, what you or I might think of as easy or normal is not.
We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.
The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.
It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.
We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.
The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.
It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.
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.
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?".
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