No medical appointments today. Tomorrow we see Dr Kaplan.
First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.
The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...
We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.
In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.
Showing posts with label melanoma brain tumors. Show all posts
Showing posts with label melanoma brain tumors. Show all posts
Wednesday, October 26, 2011
Thursday, September 29, 2011
Post-treatment blues
Meagan is doing fine physically after the gammaknife treatment today. Even though they zapped five tumors instead of the anticipated two. Typically, it takes 24 hours for side effects to emerge. Right now she is just experiencing fatigue.
Emotionally, she was a wreck most of the afternoon. She's got her feet back underneath her at the moment. But it was a pretty big emotional hurricane. The discovery of three new brain tumors emerging in the last ten days is not a good sign. It implies there are many more cancer "seeds" in the brain "soil" just waiting to germinate or already underway. When the load gets large, spot zapping no longer works. So the next, last step to control them would be whole brain radiation. You only get one shot at that. We won't know for another thirty days (the follow-up scan) or if symptoms arise if that is the case, but if one is in to tea leaf reading, you'd bet we will see many more. Whole brain radiation is not a cure, and comes with a set of side effects. Hair loss (which shouldn't be an issue as she will lose it anyway if she starts chemo in ten days), fatigue, nausea (controllable) and 20% of people get immediate mental deficit effects (inability to multi-task, memory issues). We already have enough of that going on - so it is a frightening prospect to her.
It also put the issue of mortality squarely in play and how much time she has left and whether continued treatment is worthwhile. We are also fighting this cancer on many fronts - the cancer is likely growing in the non-treated areas of her spine and in other places. Suffice to say it was a long, draining, and emotionally charged discussion. I spent a lot of time reminding her of her own words in her eloquent emails, especially how she wants this to end assuming it goes that way - with grace, dignity, appreciation and a "lovely" good-by.
I am exhausted. She is spent.
Emotionally, she was a wreck most of the afternoon. She's got her feet back underneath her at the moment. But it was a pretty big emotional hurricane. The discovery of three new brain tumors emerging in the last ten days is not a good sign. It implies there are many more cancer "seeds" in the brain "soil" just waiting to germinate or already underway. When the load gets large, spot zapping no longer works. So the next, last step to control them would be whole brain radiation. You only get one shot at that. We won't know for another thirty days (the follow-up scan) or if symptoms arise if that is the case, but if one is in to tea leaf reading, you'd bet we will see many more. Whole brain radiation is not a cure, and comes with a set of side effects. Hair loss (which shouldn't be an issue as she will lose it anyway if she starts chemo in ten days), fatigue, nausea (controllable) and 20% of people get immediate mental deficit effects (inability to multi-task, memory issues). We already have enough of that going on - so it is a frightening prospect to her.
It also put the issue of mortality squarely in play and how much time she has left and whether continued treatment is worthwhile. We are also fighting this cancer on many fronts - the cancer is likely growing in the non-treated areas of her spine and in other places. Suffice to say it was a long, draining, and emotionally charged discussion. I spent a lot of time reminding her of her own words in her eloquent emails, especially how she wants this to end assuming it goes that way - with grace, dignity, appreciation and a "lovely" good-by.
I am exhausted. She is spent.
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).
Monday, September 19, 2011
More Treatment Ahead
They did find two new small brain tumors on the last scan. She is scheduled to have them zapped with the Gamma knife radiation on the 29th. The good news is the last two tumors which got zapped about 5 weeks ago are responding to the radiation, the smaller one has disappeared and the larger one has reduced in volume by 41%. So our doc says that is a pretty good sign her melanoma is radiation sensitive, for now. And thus the odds of successful treatment on the 29th are good. So it's pretty much as predicted - scan and zap.
It's somewhat of a relief ironically, rather than bad news. It could have been there were so many new tumors that there would be really no effective treatment. Or that the previously treated tumors didn't respond. So what her tumors are acting like...is acne - a zit emerges and you pop it. A tumor emerges and you zap it. It could be our life for quite a while, especially since no cure is on the horizon. So our favorite friends are now our radiation oncologists - Vermeulen for the brain and Landis for the spine and body.
It's somewhat of a relief ironically, rather than bad news. It could have been there were so many new tumors that there would be really no effective treatment. Or that the previously treated tumors didn't respond. So what her tumors are acting like...is acne - a zit emerges and you pop it. A tumor emerges and you zap it. It could be our life for quite a while, especially since no cure is on the horizon. So our favorite friends are now our radiation oncologists - Vermeulen for the brain and Landis for the spine and body.
Saturday, September 17, 2011
What a difference a year makes...
I've written about "Scanxiety" before. It used to be that from the day of the scan until we got the results, there would be a lot of tension. We'd be hoping for clean scans, and when we got the news (which to this point has always been bad) there would be a lot of sadness, anger and worry. We've also had a few false messages about the implications of the results - such as from her last spinal column CT scans, when we went from an initial communication over the phone of "untreatable", to "possibly treatable in a couple months with chemotherapy", to "treatable with Tomo therapy radiation".
Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.
So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.
But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.
Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.
So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.
But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.
Friday, September 16, 2011
Another MRI in the bag...
Got the brain MRI done today. Other than the hour delay, everything went well. She still complains about how cold they keep all these radiation and scanning machines. Despite warm blankets, she is never warm enough. It's also always amazing how much total time is required for a 45 minute actual scan. We left the house at 12:45 and got home at 4:45. What a way to blow an afternoon. At least I got a nice bike ride around Mercer Island with a friend this morning while Meagan was with friends. It was very pleasant out and great company.
Daily Tomo therapy radiation is done for now - last treatment yesterday. Will miss that crew and facility - such a contrast to the big Swedish Cherry Hill campus we were at today for the MRI.
She took another tumble yesterday. Just scrapes, nothing serious. She is sporting a very impressive set of bruises though on her knees and left wrist. She's pretty unstable walking, but maybe now that she's done with the radiation treatments, it will get better.
So we wait for the results meeting on Monday afternoon. We will try to stay distracted and not project "what if" results. Meagan just needs a good weekend of downtime and rest - she is pretty worn out from the radiation treatments.
I could use some sleep...
Daily Tomo therapy radiation is done for now - last treatment yesterday. Will miss that crew and facility - such a contrast to the big Swedish Cherry Hill campus we were at today for the MRI.
She took another tumble yesterday. Just scrapes, nothing serious. She is sporting a very impressive set of bruises though on her knees and left wrist. She's pretty unstable walking, but maybe now that she's done with the radiation treatments, it will get better.
So we wait for the results meeting on Monday afternoon. We will try to stay distracted and not project "what if" results. Meagan just needs a good weekend of downtime and rest - she is pretty worn out from the radiation treatments.
I could use some sleep...
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.
Saturday, September 3, 2011
To clarify or not...
One of the challenges Meagan faces is around memory and communication. In some ways she is as sharp as ever - remembering names and events from long ago. Her shorter term memory though has changed. She will be describing something which took place - and one of two things will occur. She will not remember the details and will make stuff up to suit her narrative, and then look to me for validation. Or even though I know she knows inside what she means, what she says will come out differently than what she sees in her head. That tends to particularly happen when it comes to time, dates and numbers.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
Tuesday, August 23, 2011
A brief follow-up to the earlier post labeled "Time"
I don't want people to misconstrue the earlier post describing her changed capabilities. It was not meant to discourage people from contacting her. It was to describe what she is going through (cognitively, physically, and emotionally) and provide some explanation for why she might not be responding in her usual manner. And to assure people that contact is welcome and received, even though it might not get responded to.
I made a point in that post about how important it was to her to manage her own schedule and communication. All the changes that have occurred have left her in a dependent state in many respects. This is not comfortable for her. She even hates that I have to drive her everywhere. She was proud of her identity and ability to be a smart, high functioning, independent person. So given the changes, while I can step in gently in certain matters - such as keeping her on track with medical appointments - she has made it very clear to me that she wants to be in control of her schedule and communications - it is not something for me to take over - I have neither the right nor the will. Because it allows her some measure of independence and freedom and control. That is very important to her when so much of her other aspects are out of her control - due to medication, radiation and the impacts on the brain, and the stroke effects. She has more than enough capability to decide how to fill her schedule, even though some of the details might be fuzzy. And even though the usual tools - email, phone, Facebook - take more time or don't get looked at for a while. She also realizes that she needs to create her own time to handle her emotional and physical responses to the events, and to engage in important activities in her studio - even at the cost of not being as responsive or seeing as many people as she would like as often as she would like - but it is a conscious choice.
I made a point in that post about how important it was to her to manage her own schedule and communication. All the changes that have occurred have left her in a dependent state in many respects. This is not comfortable for her. She even hates that I have to drive her everywhere. She was proud of her identity and ability to be a smart, high functioning, independent person. So given the changes, while I can step in gently in certain matters - such as keeping her on track with medical appointments - she has made it very clear to me that she wants to be in control of her schedule and communications - it is not something for me to take over - I have neither the right nor the will. Because it allows her some measure of independence and freedom and control. That is very important to her when so much of her other aspects are out of her control - due to medication, radiation and the impacts on the brain, and the stroke effects. She has more than enough capability to decide how to fill her schedule, even though some of the details might be fuzzy. And even though the usual tools - email, phone, Facebook - take more time or don't get looked at for a while. She also realizes that she needs to create her own time to handle her emotional and physical responses to the events, and to engage in important activities in her studio - even at the cost of not being as responsive or seeing as many people as she would like as often as she would like - but it is a conscious choice.
Friday, August 5, 2011
Angst and Confusion
I'm still trying to make sense of yesterday. Meagan feels a sense of palpable relief - that these tumors can be addressed and that she shouldn't pay any attention to probabilities and outcomes. The specialist, Dr. Vermeulen, was very positive, direct, and reassuring. "Oh these are nothing, we can handle these".
I didn't have any doubt that the GammaKnife could zap the new tumors - I have read enough about the process to understand its efficacy. What was far more salient, in my view, was that there were these new tumors. Which means that the melanoma really is in the brain (it wasn't doused in the craniotomy and subsequent Cyberknife of the surgical area) and is spreading (the tumors are not clustered). The odds that these three tumors (yes, three tumors, Kaplan's original communication to us was incorrect) will be the last tumors we see in the brain are pretty low. It's the "seed and soil" theory - once it's spread, it's likely to sprout. Vermeulen kind of acknowledged this when she said that melanoma is capricious, sometimes it will lay dormant for a while after surgery. She did also then describe what whole brain radiation therapy treatment would look like if it came to that. And she described how they could zap other tumors in other parts of the body if it became necessary. She didn't get into any detail about how melanoma can be radiation resistant or that it can jailbreak and show up in lots of places in the brain and elsewhere.
As a specialist - whose job it is to zap tumors - she is very sanguine and clinical in some respects - a thorough professional who has the tools to be able to take care of what she sees on the brain MRI. She also is comforting, but kind of ducked some of the larger issues by laying the responsibility for the systemic treatment at Kaplan's feet ("he'll take care of that and will try different chemo maybe" - not really knowing how much has already been tried and that we are at the end of our options).
So I observed this interesting phenomena of one specialist saying, no big deal we can handle this (and maybe other tumors), and another generalist (Kaplan) having a slightly different interpretation - which led him to give an overall assessment of outcomes based on the complete picture. I certainly believe that he knew Vermeulen could take care of the tumors which just emerged. But he also knows that it means that we cannot pursue any systemic treatment (beyond the Temodar she is on - which is a chemotherapy which has shown very little to no long term impact - at best you get some short term relief). It also means we cannot do any clinical trials anywhere, even on a compassionate use basis, because Meagan's brain will have swelling and irritation as a result of the Gammaknife treatment and remain on steroids and anti-seizure medication, in fact her steroid dose may be upped for a period after her treatment on the 12th. So he knows that melanoma is in charge, we have no recourse but to just get a tumor when we can, and that reduces the odds of your long term survival.
So it appears that we are going to play the game "whack a mole". Right now we are whacking brain tumors. When you whack brain tumors it means you can't bring in the last big gun out there which has any proven success rate with stopping melanoma (Interleukin 2). So extracranially (i.e., from the neck down) the disease is doing what it wants. Under Vermeulen's approach when a symptomatic tumor shows up, you just zap it or surgically remove it.
In some ways I feel comforted by this, and I sure know Meagan is. Because it takes the focus off outcomes and probabilities and gives her a little hope. Clearly she needs that hope (she has been a complete wreck since our meeting with Kaplan) and the further out there in her mind she can push that day when they say there is nothing more they can do, the better. So between now and that day - she is just going to focus on the facts at hand. And not focus on what the odds are.
It's a little more complicated for me. I'm all for zappage and tumor management. But it's pretty hard to ignore the overwhelming weight of evidence. So I can be of two minds - the mind that focuses on today and the immediate treatment of what needs to be addressed, and the long term forces at work and how little we have to deal with them. But I need to play Meagan's game, because that is what she needs. So no more talk of outcomes and probabilities. Just a focus on what we have at hand. I'll keep the overall awareness of where we are in the back of my mind. And juggle those dichotomies...
I didn't have any doubt that the GammaKnife could zap the new tumors - I have read enough about the process to understand its efficacy. What was far more salient, in my view, was that there were these new tumors. Which means that the melanoma really is in the brain (it wasn't doused in the craniotomy and subsequent Cyberknife of the surgical area) and is spreading (the tumors are not clustered). The odds that these three tumors (yes, three tumors, Kaplan's original communication to us was incorrect) will be the last tumors we see in the brain are pretty low. It's the "seed and soil" theory - once it's spread, it's likely to sprout. Vermeulen kind of acknowledged this when she said that melanoma is capricious, sometimes it will lay dormant for a while after surgery. She did also then describe what whole brain radiation therapy treatment would look like if it came to that. And she described how they could zap other tumors in other parts of the body if it became necessary. She didn't get into any detail about how melanoma can be radiation resistant or that it can jailbreak and show up in lots of places in the brain and elsewhere.
As a specialist - whose job it is to zap tumors - she is very sanguine and clinical in some respects - a thorough professional who has the tools to be able to take care of what she sees on the brain MRI. She also is comforting, but kind of ducked some of the larger issues by laying the responsibility for the systemic treatment at Kaplan's feet ("he'll take care of that and will try different chemo maybe" - not really knowing how much has already been tried and that we are at the end of our options).
So I observed this interesting phenomena of one specialist saying, no big deal we can handle this (and maybe other tumors), and another generalist (Kaplan) having a slightly different interpretation - which led him to give an overall assessment of outcomes based on the complete picture. I certainly believe that he knew Vermeulen could take care of the tumors which just emerged. But he also knows that it means that we cannot pursue any systemic treatment (beyond the Temodar she is on - which is a chemotherapy which has shown very little to no long term impact - at best you get some short term relief). It also means we cannot do any clinical trials anywhere, even on a compassionate use basis, because Meagan's brain will have swelling and irritation as a result of the Gammaknife treatment and remain on steroids and anti-seizure medication, in fact her steroid dose may be upped for a period after her treatment on the 12th. So he knows that melanoma is in charge, we have no recourse but to just get a tumor when we can, and that reduces the odds of your long term survival.
So it appears that we are going to play the game "whack a mole". Right now we are whacking brain tumors. When you whack brain tumors it means you can't bring in the last big gun out there which has any proven success rate with stopping melanoma (Interleukin 2). So extracranially (i.e., from the neck down) the disease is doing what it wants. Under Vermeulen's approach when a symptomatic tumor shows up, you just zap it or surgically remove it.
In some ways I feel comforted by this, and I sure know Meagan is. Because it takes the focus off outcomes and probabilities and gives her a little hope. Clearly she needs that hope (she has been a complete wreck since our meeting with Kaplan) and the further out there in her mind she can push that day when they say there is nothing more they can do, the better. So between now and that day - she is just going to focus on the facts at hand. And not focus on what the odds are.
It's a little more complicated for me. I'm all for zappage and tumor management. But it's pretty hard to ignore the overwhelming weight of evidence. So I can be of two minds - the mind that focuses on today and the immediate treatment of what needs to be addressed, and the long term forces at work and how little we have to deal with them. But I need to play Meagan's game, because that is what she needs. So no more talk of outcomes and probabilities. Just a focus on what we have at hand. I'll keep the overall awareness of where we are in the back of my mind. And juggle those dichotomies...
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