We meet with Dr Kaplan at 9:20am. First she has her regular blood draw. Based on the results, we go in one of two directions. If her blood counts are normal she will likely start chemotherapy - maybe today or maybe tomorrow. It is the only thing she has left to try that might slow or stop the cancer - she knows it is a slim chance, but at least it is something. If her blood counts are low, it means she can't do the chemo. That means there is no chance of slowing or stopping the cancer and it is just a question of "if, not when". That is a hard message to hear. Moreover it means that something is going on to cause those low blood counts, something not good. If blood counts are low, the explanation could be the cancer is in her liver or bone marrow. Whatever it is, it means the process is accelerating. Again, not a good message to hear. So it's likely going to be an emotional morning. We also have all the other issues to address which are not about systemic treatment - but tumor management. And of course the looming brain MRI next week.
It definitely is a mixed bag to have days like this. Uncertainty is unsettling, and getting the information allows you to understand where you are and adjust and plan accordingly, instead of speculating and dealing with a wide range of scenarios. But if the information is not good, or closes out desirable options (kind of ironic that poisoning your body with chemicals would be considered a good option) it sends you down a path you'd rather not take - and you have to deal with the negative consequences.
Showing posts with label cancer coping strategies. Show all posts
Showing posts with label cancer coping strategies. Show all posts
Thursday, October 20, 2011
Wednesday, October 19, 2011
Off to Neurologist Today
Have a mid-day appointment at the neurologist to discuss her right arm/shoulder/lower neck issues. I am not sure she will have the actual EMG/nerve conduction study today. There is a process we are told, and the first step is the consult with the doctor. But it will be good to get in and get the process going. She remains relatively pain free for now in this area thanks to the work of the steroids.
But unfortunately this is a war on many fronts and there is pain in other areas. The pain in her lower back is increasing and becoming more defined. That it is still doing this despite the steroids for her arm tells me it has a different character - like maybe it is due to spinal tumors. But that is speculation for now.
What it does mean is we have a long list of things to discuss with Dr Kaplan. Her arm. Her back. The tumor in her upper left leg. Her pain medications. Her blood count and whether she will be able to do chemo or not. She remains very shaky and it's hard not to think she is still anemic and that the low blood count is due to some cancer cause.
She is pretty discouraged by the mounting list of ailments. Who wouldn't be?
But unfortunately this is a war on many fronts and there is pain in other areas. The pain in her lower back is increasing and becoming more defined. That it is still doing this despite the steroids for her arm tells me it has a different character - like maybe it is due to spinal tumors. But that is speculation for now.
What it does mean is we have a long list of things to discuss with Dr Kaplan. Her arm. Her back. The tumor in her upper left leg. Her pain medications. Her blood count and whether she will be able to do chemo or not. She remains very shaky and it's hard not to think she is still anemic and that the low blood count is due to some cancer cause.
She is pretty discouraged by the mounting list of ailments. Who wouldn't be?
Wednesday, September 28, 2011
A rugged couple days...
emotionally that is. Makes the actual physical stuff seem like a walk in the park.
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Friday, September 23, 2011
Forbidden Topics
A perceptive and regular reader of this blog would have noticed by now there are two things I don't write about - sex and our boys. In response to some questions however, I will write briefly about one of these...the boys. I promised them early on I would not write about them and their experiences and emotions relating to Meagan's cancer or their altered lives. Without violating that promise, a brief update (facts and figures) on them.
They are both living at home here in Seattle. We have done a bit of remodeling (actually just finishing) and they now have comfortable, adult size bedrooms on the main floor on the opposite side of the house from the master bedroom. Casey is occupying Meagan's old art studio, overlooking the backyard garden. Riley has an upstairs room which we've air conditioned to be useable all year round (it was not habitable in the summer), along with a connecting room on the main floor overlooking the front yard, which he will use as a studio.
Riley graduated in the Spring of '10 from Pomona College with a BA, majoring in Environmental Analysis, with a Philosophy minor. He intends to go to graduate school in Architecture sometime in the next 2-3 years, at a school TBD. For the short term, he is coaching Ultimate Frisbee part-time for a local high school on a daily basis, and on Monday starts full-time carpentry school. It's a four quarter program. Along with all the other things he made for his portfolio in college classes and his eight week University of Washington architecture program two summers ago, this should be a useful skill and an asset when he applies for graduate school. He has already taken the GRE (Graduate Record Exam) and did well, so that requirement is complete. It appears he will be well occupied, 9-5, M-F.
Casey is working part-time after withdrawing from the University of Colorado last winter. He is a busboy at the Dahlia Lounge in downtown Seattle for several shifts per week (dinners and lunch), and doing a great job there (not just parent boasting, according to his manager during his first performance review). He is also coaching Ultimate Frisbee part-time, for a local middle school. He applied for a transfer to the University of Washington on Sept. 1 (their deadline) as a full-time student for Winter quarter (starting in January), and expects to hear something by the end of October. There was a slight chance he could get in for Fall quarter, but that did not pan out, so he will likely add more shifts at the restaurant until he resumes his studies.
We are obviously very happy to have them here with us.
They are both living at home here in Seattle. We have done a bit of remodeling (actually just finishing) and they now have comfortable, adult size bedrooms on the main floor on the opposite side of the house from the master bedroom. Casey is occupying Meagan's old art studio, overlooking the backyard garden. Riley has an upstairs room which we've air conditioned to be useable all year round (it was not habitable in the summer), along with a connecting room on the main floor overlooking the front yard, which he will use as a studio.
Riley graduated in the Spring of '10 from Pomona College with a BA, majoring in Environmental Analysis, with a Philosophy minor. He intends to go to graduate school in Architecture sometime in the next 2-3 years, at a school TBD. For the short term, he is coaching Ultimate Frisbee part-time for a local high school on a daily basis, and on Monday starts full-time carpentry school. It's a four quarter program. Along with all the other things he made for his portfolio in college classes and his eight week University of Washington architecture program two summers ago, this should be a useful skill and an asset when he applies for graduate school. He has already taken the GRE (Graduate Record Exam) and did well, so that requirement is complete. It appears he will be well occupied, 9-5, M-F.
Casey is working part-time after withdrawing from the University of Colorado last winter. He is a busboy at the Dahlia Lounge in downtown Seattle for several shifts per week (dinners and lunch), and doing a great job there (not just parent boasting, according to his manager during his first performance review). He is also coaching Ultimate Frisbee part-time, for a local middle school. He applied for a transfer to the University of Washington on Sept. 1 (their deadline) as a full-time student for Winter quarter (starting in January), and expects to hear something by the end of October. There was a slight chance he could get in for Fall quarter, but that did not pan out, so he will likely add more shifts at the restaurant until he resumes his studies.
We are obviously very happy to have them here with us.
Wednesday, September 14, 2011
"Is it worth it?"...
Her back was painful yesterday, and she noticeably winced when I was parking the car at the treatment center and bumped the curb (not that hard mind you) and the car jolted a bit. She had taken some ibuprofen just before we left home and it hadn't kicked in yet. She then asked when the radiation was supposed to reduce the spinal tumor so it wasn't impinging on the nerve. I thought the doctor had said about three weeks but wasn't sure.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
Tuesday, September 13, 2011
Optimism, Pessimism, and Realism...
I used to think of myself as an optimist. Invariably no matter the circumstances, I would look to the possible good outcomes and orient my thoughts and actions that way. In looking back over some of the posts on this blog for the last number of months, I realize that the optimist is giving way to something else. And it ends up permeating other aspects of one's life. This is not surprising I suppose given how dominant Meagan's disease is in our life - it is the topic of conversation (when one includes talking about treatments, side effects, appointments, etc.) and the primary activity driver (driving to and from appointments, waiting, watching over her, etc.). I really don't have a life outside of the disease, even though it is she that has it, and I find it pretty hard to believe that any caretaker could remain positive over a significant period of time as the disease takes its toll and the downward cycle continues.
Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.
I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.
We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.
So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.
Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.
I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.
We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.
So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.
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".
Monday, August 8, 2011
Trying to give her a bit of independence today
Meagan is feeling a little constrained by the need to have someone around her at all times. She is normally quite sensitive to being an imposition on anyone, and even the fact that she can't drive and needs someone to shuttle her makes her uneasy. She also clearly needs someone to cross the street with her, so she can't walk alone; she's prone to stepping off the curb without paying attention or being able to see cars coming.
So today we are going to try something different. After I drive her to an appointment and wait for her for an hour, we are then going to drive to University Village. I am then going to drop her off, probably at the Barnes and Noble. Then I'll park and find a different place to hang out. That way she can get the run of the Village pretty safely, read, wander, get coffee, window shop, whatever she wants to do. But she will know I am close by and available to get her in a heartbeat. Mentally she just wants to feel normal and this could be a good way to do that. If it works, we'll do it regularly.
So today we are going to try something different. After I drive her to an appointment and wait for her for an hour, we are then going to drive to University Village. I am then going to drop her off, probably at the Barnes and Noble. Then I'll park and find a different place to hang out. That way she can get the run of the Village pretty safely, read, wander, get coffee, window shop, whatever she wants to do. But she will know I am close by and available to get her in a heartbeat. Mentally she just wants to feel normal and this could be a good way to do that. If it works, we'll do it regularly.
Sunday, August 7, 2011
What day of the week is it?
The days seem to sort of blend, except for particularly momentous days (scans, results, treatment). It doesn't matter much whether it's Monday or Thursday - because it is always Cancerday. And that means a regimen of pills on schedule, making sure appointments are organized, providing reassurance and memory support, "hovering" somewhere within spitting distance or making sure someone else has the baton (in case of emergency - and given she has the three new brain tumors, the risk of something happening went up), and responding to questions. It means putting on my coat of armor to handle the emotional ups and downs, as well as helping her keep hers on.
It's been more challenging of late. Not just the finding of more brain tumors and the upcoming Gamma knife radiation and making sure I know what that is all about. Not just the issue of helping her process this new news and find a way to have some optimism and a way to live each day given this awful disease and how it's presented itself. Those are all bad and sucky in and of themselves. But she has definitely been more loopy, forgetful, and having a harder time getting meaningful, logical sentences out. Not all the time, but more often. For a while there it seemed to be related to fatigue because it was more noticeable in the afternoon. But lately it's an all day thing, and she even mentioned it this morning - how she wasn't feeling as sharp. It could be any number of things - delayed response to the stroke or last radiation, a change in medications (we just weaned her off one of her anti-seizure medications - even a reduction can have an effect), or maybe the cumulative effects of the chemo (Temodar).
But it is hard (I'm using this word a lot - need to look up more synonyms) for me, and the boys, when she isn't quite coherent at times. I don't want to correct her or get her frustrated with the condition. So I'm trying ways to "reinterpret" her statements so it sounds like she said the right thing. Like a while ago, she said so-and-so was coming to our house at 9:00 tomorrow morning to go for a walk with her in our neighborhood and would pick her up at 10:30. I replied, "right, she will have you back here at 10:30 so I can take you to your appointment". Meagan said, "isn't that what I said?". "Almost", I replied. I think she's getting used to the situation, so she isn't pursuing much anymore figuring out exactly what the missing or incorrect communication was. Because it is occurring quite a bit more. And I know her communications to some people over the phone when leaving a message have been a bit...rambling.
So it not only is getting more difficult to make sure we are on the same page about particular issues or situations, but it affects the nature of our relationship. I'm even more of a caregiver than I was before. I mean, it has happened before such as after her stroke, but those times improved, and I could see and hear the progress. Here it's feeling a bit more like sliding backward, without a known reason, and even though the Gamma knife isn't supposed to leave much in the way of side effects, you have to wonder if there isn't a little bit of a probability given they are not just hitting the tumors, but some margin around the tumor (which are healthy, presumably functional brain cells).
There's not much else to do but press on. But I worry about this development.
It's been more challenging of late. Not just the finding of more brain tumors and the upcoming Gamma knife radiation and making sure I know what that is all about. Not just the issue of helping her process this new news and find a way to have some optimism and a way to live each day given this awful disease and how it's presented itself. Those are all bad and sucky in and of themselves. But she has definitely been more loopy, forgetful, and having a harder time getting meaningful, logical sentences out. Not all the time, but more often. For a while there it seemed to be related to fatigue because it was more noticeable in the afternoon. But lately it's an all day thing, and she even mentioned it this morning - how she wasn't feeling as sharp. It could be any number of things - delayed response to the stroke or last radiation, a change in medications (we just weaned her off one of her anti-seizure medications - even a reduction can have an effect), or maybe the cumulative effects of the chemo (Temodar).
But it is hard (I'm using this word a lot - need to look up more synonyms) for me, and the boys, when she isn't quite coherent at times. I don't want to correct her or get her frustrated with the condition. So I'm trying ways to "reinterpret" her statements so it sounds like she said the right thing. Like a while ago, she said so-and-so was coming to our house at 9:00 tomorrow morning to go for a walk with her in our neighborhood and would pick her up at 10:30. I replied, "right, she will have you back here at 10:30 so I can take you to your appointment". Meagan said, "isn't that what I said?". "Almost", I replied. I think she's getting used to the situation, so she isn't pursuing much anymore figuring out exactly what the missing or incorrect communication was. Because it is occurring quite a bit more. And I know her communications to some people over the phone when leaving a message have been a bit...rambling.
So it not only is getting more difficult to make sure we are on the same page about particular issues or situations, but it affects the nature of our relationship. I'm even more of a caregiver than I was before. I mean, it has happened before such as after her stroke, but those times improved, and I could see and hear the progress. Here it's feeling a bit more like sliding backward, without a known reason, and even though the Gamma knife isn't supposed to leave much in the way of side effects, you have to wonder if there isn't a little bit of a probability given they are not just hitting the tumors, but some margin around the tumor (which are healthy, presumably functional brain cells).
There's not much else to do but press on. But I worry about this development.
Saturday, July 30, 2011
Reinforcements...
A spot of good news, our son Riley has returned from two weeks abroad visiting his girlfriend in Berlin. He had a wonderful time, but we missed him and I'm glad he's back for several reasons.
First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.
First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.
Sunday, July 24, 2011
Sun and Laughter - a good tonic
Thank you sun gods! Between that and a couple outings with friends which generated lots of laughter, today is a better day. It's kind of amazing how Meagan gets so nourished by meeting with people, and even though she can get teary about describing for them what her prognosis is and talking quite candidly about it, there is still a lot of focus on the hope for the good life remaining. And finding the joy and happiness of each day. It makes it a lot easier when you can be outside and surrounded by our beautiful garden and the antics of the dogs, squirrels, and birds. Or with good friends.
Since we are in a relatively good spot right now (with no new active impairment due to the disease), it does afford us the opportunity to stretch a bit. We set up our alarm system so she has a portable panic button that works anywhere in the house, so if I am not here for a short period of time, she can hit it and it will generate a call from the central station and if there is no response they dispatch the paramedics. So I may be able to sneak out for a quick ride or walk or run errands even if the boys are home, but asleep. It helps her confidence a bit also.
But I do kinda feel like we are waiting for the other shoe to drop. It may occur at the brain MRI results meeting on the 3rd. Or it may just show up when some part of her starts to feel differently.
In the meantime there are now more good days than bad. She is even able to laugh at her condition after the stroke. Often times she will want to talk about something to someone, but will be having a hard time remembering what it is she wants to say. So she will look to me and ask me what she wants to say. Now, I've gotten pretty good after 23 years at finishing her sentences, as many married couples can. But I am not a mind reader and it's pretty hard to be prescient and discern what it is that she wants to tell someone, without some sort of hint, to start her sentences. So we get a good chuckle out of that.
Since we are in a relatively good spot right now (with no new active impairment due to the disease), it does afford us the opportunity to stretch a bit. We set up our alarm system so she has a portable panic button that works anywhere in the house, so if I am not here for a short period of time, she can hit it and it will generate a call from the central station and if there is no response they dispatch the paramedics. So I may be able to sneak out for a quick ride or walk or run errands even if the boys are home, but asleep. It helps her confidence a bit also.
But I do kinda feel like we are waiting for the other shoe to drop. It may occur at the brain MRI results meeting on the 3rd. Or it may just show up when some part of her starts to feel differently.
In the meantime there are now more good days than bad. She is even able to laugh at her condition after the stroke. Often times she will want to talk about something to someone, but will be having a hard time remembering what it is she wants to say. So she will look to me and ask me what she wants to say. Now, I've gotten pretty good after 23 years at finishing her sentences, as many married couples can. But I am not a mind reader and it's pretty hard to be prescient and discern what it is that she wants to tell someone, without some sort of hint, to start her sentences. So we get a good chuckle out of that.
Tuesday, July 19, 2011
A part of the job...
There is one part of being a cabana boy for a stroke victim who has cancer that really bites. Regrettably, her memory is not what it used to be. So she forgets about the conversations we have had before - important conversations - with Kaplan, about her prognosis, and the (dwindled) options and consequences. So she will have a question, which inevitably leads to clarification, more questions (because she is having a harder time following things too), and getting into the deep end rather quickly. I then end up feeling like the bad guy because I am informing her of difficult things (which she has heard and processed before), which makes her emotional, and then of course that makes me emotional. So she gets traumatized, I get re-traumatized, and the whole thing is a mess. It happened again this morning. This is not the first time, nor will be the last. This is one part of the job I'd rather delegate to Kaplan and team entirely - but he is not available 24x7 or whenever the mood strikes her to dig into it. So I'm "it", and it bites.
Monday, July 18, 2011
A Change of Scenery
We had a nice weekend at our place at Decatur Island. Good food (including crab!) and friends and a beautiful full moon on Saturday night/Sunday morning. I'm not sure what time it was in the middle of the night when Meagan woke me up to have me look at it. But it sure looked big!
Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.
It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.
Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.
Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.
It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.
Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.
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.
Saturday, June 25, 2011
Audrey
She's sassy and smart. We are having a threesome.
There's me, Meagan, and.......Audrey - her wig. It appears the Cyberknife brain radiation treatment has a side effect other than brain irritation causing seizures. We are talking hair loss. Not just short hair, but falling out in clumps, patchy bald spots smooth as a baby's butt hair loss. All in the back. So right as she is a couple months out from her brain surgery and buzz cut, and she's moving from Sigourney Weaver/Demi Moore buzz to pretty short but pixie-ish fun haircut- we have major patchy spots happening. Thus Audrey.
We bought the wig back in the Fall when we thought she was going to undergo chemo and lose her hair. They don't take returns when you've taken a wig home, so it's been in storage. How handy. She made a public appearance today. It needs a bit of trimming and styling, but it looks very good on her.
But she probably needs to undergo another full buzz cut. Otherwise she is going to eventually have long har in the front and uber short hair in the back. And it may take a while before the hair returns. So I am getting the clippers ready.
There's me, Meagan, and.......Audrey - her wig. It appears the Cyberknife brain radiation treatment has a side effect other than brain irritation causing seizures. We are talking hair loss. Not just short hair, but falling out in clumps, patchy bald spots smooth as a baby's butt hair loss. All in the back. So right as she is a couple months out from her brain surgery and buzz cut, and she's moving from Sigourney Weaver/Demi Moore buzz to pretty short but pixie-ish fun haircut- we have major patchy spots happening. Thus Audrey.
We bought the wig back in the Fall when we thought she was going to undergo chemo and lose her hair. They don't take returns when you've taken a wig home, so it's been in storage. How handy. She made a public appearance today. It needs a bit of trimming and styling, but it looks very good on her.
But she probably needs to undergo another full buzz cut. Otherwise she is going to eventually have long har in the front and uber short hair in the back. And it may take a while before the hair returns. So I am getting the clippers ready.
Sunday, May 22, 2011
Guess Who is Tired (Again) This Morning...
I've pretty much gotten used to not getting much sleep. Whether from anxiety or the hospital stay or our pill schedule or road trips I've taken recently - a solid through the night sleep is so rare an event I can't remember when it last occurred. So most days I need to do a power nap at some point - hardly full compensation - but helpful and I am oh so grateful that I have the freedom and flexibility to pull it off.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
Friday, May 20, 2011
The Things I Can't (yet) Write About
I'm writing about most of the things connected to this cancer. Including the transformation of being a caregiver for a cancer victim to now additionally a caregiver for a stroke victim. As an aside, the stroke in some weird ways has been helpful, which I will describe below.
But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.
Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.
The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.
The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.
Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????
But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.
Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.
The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.
The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.
Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????
Thursday, May 5, 2011
Next Up
Meagan's sodium levels have stabilized and Dr. Kaplan has cut her dosage of salt tabs in half. We'll keep it up until the current prescription is empty, likely by middle of next week. She continues to enjoy Fritos, potato chips, corn flakes and high protein Odwalla drinks (they are laden with sodium). Overall her appetite is great, thanks in large part to the delicious meals being provided by the Faeries, for which we are very grateful.
Tuesday, May 3, 2011
The Calm before...
Meagan is doing really well at home recovering from the stroke. She actually had fun with her speech therapist yesterday (who works on cognitive issues as well). Probably because we discussed focusing on the things that matter most to her right now - which is all about connecting with friends. So she is practicing typing with the goal of getting back on Facebook. She has enjoyed our new schedule - can't get started too early (nothing before 10:00am) - with then either doctor visits or home therapy and then visits with friends and family. She worries a lot about me, especially when she realized she won't drive again, because she doesn't want to be a burden, but I assured her we can make any appointment happen and me driving her or she walking as far as University Village were all doable.
We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.
Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.
We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.
Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.
Subscribe to:
Posts (Atom)