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?
Showing posts with label Gamma Knife radiation. Show all posts
Showing posts with label Gamma Knife radiation. Show all posts
Wednesday, October 19, 2011
Sunday, October 16, 2011
"Promise you won't forget me"...
I was only walking to the store and back with our dog.
But her tearful question was clearly loaded with more meaning. Part of it was due to some upset at her part at not being able to shoulder any of the load of running the household. And wanting to find something she could do for me, but can't. A much larger part of it was wanting me to remember her as she used to be - the vibrant, capable, smart woman I married. Not the person she has become. Reliant on others, unable to contribute. And part I suppose is based on recognition of her mortality and being gone, and not wanting me to forget her generally. It was such a gut-wrenching question and I could see the fear and worry and insecurity written all over her face. It must be just so terrible to have your mind slowly robbed of its capability and to have various insults delivered to your body which reduces your capacity to function as you once did. Then you add the worry that your life partner is getting used to doing everything on his own and it probably confirms that you are on a particular path.
Last night she made a comment to me about how she hoped she could be the partner I married. I tried to reassure her and told her that when I looked at her I was looking at 24 years of marriage and 24 years of memories and not the person she was at that instant. So not to worry about trying to be something today she is not - because I love her for all she is - which takes into account all the years.
But her tearful question was clearly loaded with more meaning. Part of it was due to some upset at her part at not being able to shoulder any of the load of running the household. And wanting to find something she could do for me, but can't. A much larger part of it was wanting me to remember her as she used to be - the vibrant, capable, smart woman I married. Not the person she has become. Reliant on others, unable to contribute. And part I suppose is based on recognition of her mortality and being gone, and not wanting me to forget her generally. It was such a gut-wrenching question and I could see the fear and worry and insecurity written all over her face. It must be just so terrible to have your mind slowly robbed of its capability and to have various insults delivered to your body which reduces your capacity to function as you once did. Then you add the worry that your life partner is getting used to doing everything on his own and it probably confirms that you are on a particular path.
Last night she made a comment to me about how she hoped she could be the partner I married. I tried to reassure her and told her that when I looked at her I was looking at 24 years of marriage and 24 years of memories and not the person she was at that instant. So not to worry about trying to be something today she is not - because I love her for all she is - which takes into account all the years.
Saturday, October 1, 2011
Resilience
Meagan's ability to bounce back from bad news is really remarkable. After a tumultuous day on Thursday, yesterday she was pretty calm and serene. She hasn't altered the current facts to suit her needs (as she has done sometimes in the past, when she would take the tiniest bit of hope and expand that to be the "base case"), rather, she is accepting where she is right now, and focusing on the present. She was able to use her computer and start arranging a few get-togethers, and that always gives her something to look forward to and a sense of accomplishment, even though it takes quite a while for her to write even a short email. We are shooting for going up to our place at Decatur Island next Thursday to Sunday, assuming everything goes well with the surgery on Monday and she is feeling up to it. She really wants to be up there - she loves it in the Fall and it would be a good getaway before starting chemo.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
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.
Sunday, September 25, 2011
A Difficult Morning
Meagan's knees are still pretty banged up from her falls ten days ago, and are causing a fair bit of pain. I think some of her walking this last week (we did the Greenlake loop on Wednesday, which is 2.8 miles) exacerbated the situation, so this morning we iced up the right one and she will take it easy today. But that is not the only problem. Her back is sore - we don't know if that is the result of the falls or an indicator of something else. It is not in the same location as the pain that led to the diagnosis of the spinal tumors. She also has an unusual pain and tingling and numbness in her right arm that runs from her wrist to her shoulder. This showed up a couple days ago - it's hard to believe it is fall-related. So net net, I am more than a little concerned that the spinal tumors are spreading and causing some nerve impingement leading to pain. For now, a couple ibuprofen work to ease it, but I am going to get her in to see Dr Kaplan tomorrow. It may be we have to accelerate the schedule for the spinal column CT scan.
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
Wednesday, September 21, 2011
Just to Clarify some Questions which have Arisen...
This will be a bit of a "technical" post about her disease, in response to some queries. Don't read it if you are not in to scenarios and details and would rather focus on Meagan as a person and the life she enjoys today.
Meagan's disease is at this point incurable. And therefore likely terminal, in some undefined timeframe. For the moment it is controlled. That means we don't expect her imminent demise, in fact at this point it looks probable she will be here for the holidays, something that means a lot to her. But controlled in the context of melanoma means you really only focus on the short term - it speaks nothing to any long term prognosis. Because she has a quite active disease, and melanoma is known for being capricious, unpredictable in its behavior and can "jail break" (surge and grow rapidly), one just has to be cautious in looking too far ahead and assuming anything.
Thanks to radiation treatments, the current tumors seem to be responding (shrinking), and the ones in her brain for sure are shrinking as a result of the last treatment. We don't know yet if her spinal tumors are responding; there is a temptation to extrapolate and assume that if the brain tumors responded, then it's likely that the spinal tumors will as well. But we won't know that for sure until her spine is rescanned (in the next 45 days or so). It's not safe to assume that any particular treatment is working until you have hard data (a scan) confirming an impact and it's not safe to assume that the trajectory will remain the same over time.
Melanoma has somewhat of a reputation for radiation resistance. It can be effective initially, but then can mutate or survive and continue to grow after initially shrinking. Even if the tumor has shrunk, some melanoma cells can survive. It can also return to a treated area. In the case of the brain, her tumors are being "spot welded" as Dr. Vermeulen likes to say. This means that the focal point of the radiation beam is the tumor itself and as a result of the technology the radiation burden/dose on the rest of the gray matter is not large. Obviously the more tumors which emerge (and even beyond the newly discovered ones we fully expect others to occur down the road) the more difficult it becomes. You can still spot weld them with the Cyber knife or Gamma knife, but the burden/dose on the rest of the gray matter starts to increase. So you start killing off more gray matter, and that causes long term impacts. One thing that can happen is that instead of 1-2 brain tumors emerging, there can be a lot which pop up. The Gamma knife can handle up to about 6. Beyond that they would recommend whole brain radiation. Once you go to whole brain radiation, you get one shot at that. There is only so much radiation the brain can take, and once you've had the whole brain treatment, and you get another tumor, it's game over. So that is why it is crucial to find some systemic way to stop the melanoma from spreading - and given there is nothing like that currently out there, why melanoma is considered one of the most deadly cancers.
With regard to her spinal tumors, she has been treated in two areas of her spine. We hope the treatment is working in those areas. Because she has an active disease it is highly probable that the disease will spread into other parts of her spinal column through the epidural space. If it sticks and grows in those areas, which we will discover through a scan or through symptoms she experiences, they will be able to treat those areas with the Tomo therapy radiation. But like the whole brain radiation, you get one shot at each area. The spine can only tolerate so much radiation. So if the cancer reemerges in a previously treated area, they cannot treat it anymore.
So that's why radiation is considered local control and palliative treatment - it is short term and not a cure. It buys you some time.
She does have numerous small tumors on her lungs. For now, those are causing no problems, and are not being treated, although they could be zapped. Aside from a couple skin tumors, the melanoma has not shown up in other vital organs.
Absent a new drug discovery - and at this point I have not been able to find anything in the pipeline which would suit Meagan - the only hope for a systemic cure to stop the melanoma in its tracks is a form of chemotherapy. The Temodar did not work for her. It has worked for a very small percentage of people, and those people have remained free of disease for a period of time - they aren't considered cured, but their status is referred to as NED (No Evidence of Disease). Dr. Kaplan has indicated he wants to try to new chemotherapy called Abraxane. Whether it is used alone (single agent) or in combination with some other drug (such as Avastin), it still has a pretty low chance of success. Even if it has some initial success - melanoma shows an ability to adapt and get past it. For some, and there are anecdotal stories out there, it has worked to stop the growth. It hasn't proved its efficacy in large, controlled studies, but at this point it hardly matters; if there is a chance and there is nothing else, why not try it, especially if the side effects are manageable.
The only drug out there which has a reliable track record of producing durable responses in a limited number of patients is Interleukin-2. Generally 6% of patients will have a complete response and another 12% will have a partial response. This is a particularly nasty drug with major side effects. Even if you wanted to try it, you have to be off steroids (which Meagan is not due to her brain tumors and regular brain radiation treatment which causes swelling). Because of her seizure risk, it becomes less viable as an alternative. So unfortunately, IL-2 alone or in combination with some of the new agents being developed in clinical trials is off the table for her. At least until she has no brain tumors emerge for a significant period of time and is able to go off steroids and anti-seizure meds.
That's the picture as I see it. Very slim chance of Abraxane controlling the disease. Continued radiation of emerging tumors to control them as long as we can. Then at some point, the disease moves from controlled to uncontrolled, and runs its course. So we buy time and enjoy every minute of that time we can.
Meagan's disease is at this point incurable. And therefore likely terminal, in some undefined timeframe. For the moment it is controlled. That means we don't expect her imminent demise, in fact at this point it looks probable she will be here for the holidays, something that means a lot to her. But controlled in the context of melanoma means you really only focus on the short term - it speaks nothing to any long term prognosis. Because she has a quite active disease, and melanoma is known for being capricious, unpredictable in its behavior and can "jail break" (surge and grow rapidly), one just has to be cautious in looking too far ahead and assuming anything.
Thanks to radiation treatments, the current tumors seem to be responding (shrinking), and the ones in her brain for sure are shrinking as a result of the last treatment. We don't know yet if her spinal tumors are responding; there is a temptation to extrapolate and assume that if the brain tumors responded, then it's likely that the spinal tumors will as well. But we won't know that for sure until her spine is rescanned (in the next 45 days or so). It's not safe to assume that any particular treatment is working until you have hard data (a scan) confirming an impact and it's not safe to assume that the trajectory will remain the same over time.
Melanoma has somewhat of a reputation for radiation resistance. It can be effective initially, but then can mutate or survive and continue to grow after initially shrinking. Even if the tumor has shrunk, some melanoma cells can survive. It can also return to a treated area. In the case of the brain, her tumors are being "spot welded" as Dr. Vermeulen likes to say. This means that the focal point of the radiation beam is the tumor itself and as a result of the technology the radiation burden/dose on the rest of the gray matter is not large. Obviously the more tumors which emerge (and even beyond the newly discovered ones we fully expect others to occur down the road) the more difficult it becomes. You can still spot weld them with the Cyber knife or Gamma knife, but the burden/dose on the rest of the gray matter starts to increase. So you start killing off more gray matter, and that causes long term impacts. One thing that can happen is that instead of 1-2 brain tumors emerging, there can be a lot which pop up. The Gamma knife can handle up to about 6. Beyond that they would recommend whole brain radiation. Once you go to whole brain radiation, you get one shot at that. There is only so much radiation the brain can take, and once you've had the whole brain treatment, and you get another tumor, it's game over. So that is why it is crucial to find some systemic way to stop the melanoma from spreading - and given there is nothing like that currently out there, why melanoma is considered one of the most deadly cancers.
With regard to her spinal tumors, she has been treated in two areas of her spine. We hope the treatment is working in those areas. Because she has an active disease it is highly probable that the disease will spread into other parts of her spinal column through the epidural space. If it sticks and grows in those areas, which we will discover through a scan or through symptoms she experiences, they will be able to treat those areas with the Tomo therapy radiation. But like the whole brain radiation, you get one shot at each area. The spine can only tolerate so much radiation. So if the cancer reemerges in a previously treated area, they cannot treat it anymore.
So that's why radiation is considered local control and palliative treatment - it is short term and not a cure. It buys you some time.
She does have numerous small tumors on her lungs. For now, those are causing no problems, and are not being treated, although they could be zapped. Aside from a couple skin tumors, the melanoma has not shown up in other vital organs.
Absent a new drug discovery - and at this point I have not been able to find anything in the pipeline which would suit Meagan - the only hope for a systemic cure to stop the melanoma in its tracks is a form of chemotherapy. The Temodar did not work for her. It has worked for a very small percentage of people, and those people have remained free of disease for a period of time - they aren't considered cured, but their status is referred to as NED (No Evidence of Disease). Dr. Kaplan has indicated he wants to try to new chemotherapy called Abraxane. Whether it is used alone (single agent) or in combination with some other drug (such as Avastin), it still has a pretty low chance of success. Even if it has some initial success - melanoma shows an ability to adapt and get past it. For some, and there are anecdotal stories out there, it has worked to stop the growth. It hasn't proved its efficacy in large, controlled studies, but at this point it hardly matters; if there is a chance and there is nothing else, why not try it, especially if the side effects are manageable.
The only drug out there which has a reliable track record of producing durable responses in a limited number of patients is Interleukin-2. Generally 6% of patients will have a complete response and another 12% will have a partial response. This is a particularly nasty drug with major side effects. Even if you wanted to try it, you have to be off steroids (which Meagan is not due to her brain tumors and regular brain radiation treatment which causes swelling). Because of her seizure risk, it becomes less viable as an alternative. So unfortunately, IL-2 alone or in combination with some of the new agents being developed in clinical trials is off the table for her. At least until she has no brain tumors emerge for a significant period of time and is able to go off steroids and anti-seizure meds.
That's the picture as I see it. Very slim chance of Abraxane controlling the disease. Continued radiation of emerging tumors to control them as long as we can. Then at some point, the disease moves from controlled to uncontrolled, and runs its course. So we buy time and enjoy every minute of that time we can.
Tuesday, September 20, 2011
Post Results Day Paralysis
It is a fantastically beautiful day in Seattle today. I was able to sneak out and get a one and 1/2 hour ride in this morning while the boys were both here with Meagan - so got the endorphins going and the scenery on my Lake Washington ride loop is pretty incredible - both volcanoes out in full glory (Mt. Rainier, Mt. Baker) and the lake was calm and blue. So I should be feeling pretty good and motivated and able to tackle a few things on the chore list. But I find myself paralyzed by the opportunity. I feel like doing nothing. Not even reading. This is not the first time I've felt this way. It comes with the territory of the build up to the scan results and the figuring out of the plan. It kind of feels like when I have finished some epic 6-10 hour bike ride, when you are all cleaned up, but have nothing in the tank and just want to sit and stare at the wall. I'm ok with this. I don't feel guilty (like I might have in the past). It's just an interesting phenomenon - one I accept - that is probably pretty common amongst caregivers. So I think I will go outside and watch the birds.
The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.
The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.
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 10, 2011
11 down, 4 to go...
Our daily trips to Ballard are soon coming to an end...for the time being. Meagan has done very well with the Tomo therapy radiation treatment - no side effects to speak of. After each treatment she seems a little unsteady, but that pretty quickly resolves. She has four more spine radiation treatments next week, then a brain MRI on Friday (the follow-up to the Gamma knife radiation treatment of her most recent brain tumors), with the results discussed in person with Dr. Vermeulen the following Monday. We continue to be impressed with the staff at the Ballard Swedish Radiation clinic - very helpful and Dr. Landis is quite personable and patient at answering Meagan's questions.
The big question she has these days is, will her mental state get any better, either from being able to reduce the drugs she is on, or as the effects of the last brain radiation treatment diminish. It has been a very frustrating couple weeks for her - she realizes her mental state ranges from not sharp to downright loopy. It definitely is worse after she takes her medications at 9:00am, but even before that (from when she gets out of bed around 6:30am) she is a bit fuzzy. It is impairing her ability to do some things she wants to do, as she can't keep a train of thought, or write well, or follow the thread of a conversation or book. It has also been increasingly frustrating for us at home, as she has to ask the same questions over and over (because she can't remember she asked them or she can't remember the prior response).
Both Dr. Kaplan and Landis couldn't offer much in the way of prognosis about what is causing the mental state or how it might be reduced. She is on so many medications and has had so many brain insults it is hard to figure out what exactly is causing it. And, as I told her last night, it is pretty unlikely that she is going to have her medications reduced, in fact it is more likely they would get increased (for example, the steroid dose) as more tumors present. This obviously doesn't make her happy - but we talked about shifting the focus to figuring out different strategies to get done what she wants to get done, assuming the continuation of her present mental condition.
Meagan has never wanted to look ahead at her prognosis or what possible paths the disease can take. She feels that any discussion of this takes away from her enjoyment of whatever life she has left. It's not how every person would deal with a life ending disease, but it is the way she wants to deal with it. It's not complete denial - she knows where this is headed, she just doesn't want to think about it. It is a conundrum however, because then the doctors don't lay out all the facts and impacts for her of treatments and progression (although I know). So then when issues arise later, sometimes she is surprised or upset. For example, when the latest brain tumors were discovered, all she wanted to hear from the radiation person was, "we can handle this, these are small". It was the confidence of Dr. Vermeulen that was more important than the data (size and location of tumors, potential impacts), and the way the message was delivered. But fast forward, and she did have side effects (speech slurred, mental faculties diminished, ability to do things like write, read, follow conversations reduced) and then when she hears that the one tumor was a decent size (small is all relative) and by the zappage getting some healthy brain tissue as margin, some brain impact did result, it causes her to be upset. Then due to her mental abilities, it becomes hard for her to follow my recount of how we got to where we are. It is also complicated by the fact that she can't remember well anymore, and what she does remember tends to be what she wants to remember, or partially invented.
Obviously trying to nail down the difference between perception and reality in her state is not particularly useful, especially for past history. So as I told her yesterday, let's not focus on that - trying to dissect your recollection of what the tumor sizes were and what Dr. Vermeulen said and how that might be different from your perception today. Because likely those tumors are handled - they've been treated. Those are not what are going to get you. If she wants, the next time she gets zapped we can get a copy of the radiation pathology report and read it in detail and know exactly what she is faced with. That is an option. But we also don't have to - especially if she doesn't want to focus on future impacts.
She knows our program is scan and zap, rotating between head and body, and that apparently the radiation treatment can have some positive effect, until at some point the tumor burden overwhelms the ability of the medical community to address it. So we are in a weird kind of disease limbo land - it's active, it's popping up in really bad places, but at this point appears controllable, without physical side effects, just mental (and emotional) ones. And life isn't really too bad for her, relative to others who have this. So we need to be somewhat appreciative for where we are right now, and she gets that.
The big question she has these days is, will her mental state get any better, either from being able to reduce the drugs she is on, or as the effects of the last brain radiation treatment diminish. It has been a very frustrating couple weeks for her - she realizes her mental state ranges from not sharp to downright loopy. It definitely is worse after she takes her medications at 9:00am, but even before that (from when she gets out of bed around 6:30am) she is a bit fuzzy. It is impairing her ability to do some things she wants to do, as she can't keep a train of thought, or write well, or follow the thread of a conversation or book. It has also been increasingly frustrating for us at home, as she has to ask the same questions over and over (because she can't remember she asked them or she can't remember the prior response).
Both Dr. Kaplan and Landis couldn't offer much in the way of prognosis about what is causing the mental state or how it might be reduced. She is on so many medications and has had so many brain insults it is hard to figure out what exactly is causing it. And, as I told her last night, it is pretty unlikely that she is going to have her medications reduced, in fact it is more likely they would get increased (for example, the steroid dose) as more tumors present. This obviously doesn't make her happy - but we talked about shifting the focus to figuring out different strategies to get done what she wants to get done, assuming the continuation of her present mental condition.
Meagan has never wanted to look ahead at her prognosis or what possible paths the disease can take. She feels that any discussion of this takes away from her enjoyment of whatever life she has left. It's not how every person would deal with a life ending disease, but it is the way she wants to deal with it. It's not complete denial - she knows where this is headed, she just doesn't want to think about it. It is a conundrum however, because then the doctors don't lay out all the facts and impacts for her of treatments and progression (although I know). So then when issues arise later, sometimes she is surprised or upset. For example, when the latest brain tumors were discovered, all she wanted to hear from the radiation person was, "we can handle this, these are small". It was the confidence of Dr. Vermeulen that was more important than the data (size and location of tumors, potential impacts), and the way the message was delivered. But fast forward, and she did have side effects (speech slurred, mental faculties diminished, ability to do things like write, read, follow conversations reduced) and then when she hears that the one tumor was a decent size (small is all relative) and by the zappage getting some healthy brain tissue as margin, some brain impact did result, it causes her to be upset. Then due to her mental abilities, it becomes hard for her to follow my recount of how we got to where we are. It is also complicated by the fact that she can't remember well anymore, and what she does remember tends to be what she wants to remember, or partially invented.
Obviously trying to nail down the difference between perception and reality in her state is not particularly useful, especially for past history. So as I told her yesterday, let's not focus on that - trying to dissect your recollection of what the tumor sizes were and what Dr. Vermeulen said and how that might be different from your perception today. Because likely those tumors are handled - they've been treated. Those are not what are going to get you. If she wants, the next time she gets zapped we can get a copy of the radiation pathology report and read it in detail and know exactly what she is faced with. That is an option. But we also don't have to - especially if she doesn't want to focus on future impacts.
She knows our program is scan and zap, rotating between head and body, and that apparently the radiation treatment can have some positive effect, until at some point the tumor burden overwhelms the ability of the medical community to address it. So we are in a weird kind of disease limbo land - it's active, it's popping up in really bad places, but at this point appears controllable, without physical side effects, just mental (and emotional) ones. And life isn't really too bad for her, relative to others who have this. So we need to be somewhat appreciative for where we are right now, and she gets that.
Sunday, August 21, 2011
Time
Everyone knows how Meagan is very much a social creature, who thrives on contact and connection with people - biological family, created family, and friends. It really defines her. She also does not want to hurt people's feelings - she is quite sensitive to that. Even in her best days she was constantly fretting about that - managing her calendar so that she could see the people she wanted and needed to. She would talk about the need to create time for herself to work on her Milton project (illuminating "Paradise Lost") and it was always a struggle to get enough time to do that and meet her social obligations (which were visits with people). Fortunately she had email and Facebook, and in the mornings and evenings she could catch up with people even if she couldn't see them in person.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Saturday, August 20, 2011
Identity
A friend sent me the book, "About Alice", by Calvin Trillin. It's a wonderful book, a love story really about his wife. Alice died of her cancer related treatments. One line she said in a speech really struck me - "the worst thing cancer can do is rob you of your identity". How true...
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
Thursday, August 18, 2011
Made it through the long MRI
Checked in at 4:45 last night, she was in the machine by 5:15 and didn't emerge until around 8:30pm. Longest MRI she has been through yet. No hitches. They aren't looking for anything new - that was all on the CT scan - this is a fine grain that should pinpoint exact location from 3-D perspective of each tumor and it's precise measurements.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
Wednesday, August 17, 2011
The Back Story...
A double entendre...
This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.
She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.
The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.
It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.
Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.
So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.
As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.
The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.
Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?
This whole scenario is another reason this job completely sucks.
But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.
At least it's sunny out...
This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.
She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.
The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.
It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.
Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.
So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.
As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.
The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.
Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?
This whole scenario is another reason this job completely sucks.
But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.
At least it's sunny out...
Tuesday, August 16, 2011
D-Day
I believe that today we will find out the extent of the invasion of the cancer in Meagan's spinal column, and elsewhere. We have a meeting with Dr. Kaplan at 11am. He will have sufficient data to be be able to tell us where the disease is and what are the implications.
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
Sunday, August 14, 2011
Yesterday
She was a bit fuzzy all day, presumably an after effect of the radiation. She also had difficulty speaking, and although it got a bit better throughout the day, she still had to slow down and enunciate clearly and formulate her thoughts before talking. So the radiologist wasn't quite right when she said, no side effects from the Gamma knife brain radiation treatment....
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
Saturday, August 13, 2011
Post Treatment Reflections and thoughts on Meagan's letter
There is a big difference between getting about 5 1/2 hours sleep and almost 8 1/2 hours sleep. I feel quite a bit better today; yesterday, I was not so good. The day before a scan or treatment I am usually too hyped up to sleep much. So by 8pm last night I was yawning a lot. Meagan was tired too - even though she napped throughout most of the procedure yesterday and most of the afternoon. I'm glad it went well, obviously, now we just wait and see how long it takes before the radiation does its thing. The thing about radiation and melanoma is that there is about a 70% success rate of what they call "local control". That means in 30% of the cases the melanoma ducks the radiation and continues to grow. You always have the option at that point of hitting it again. But t's a tough beast and tends to be radiation resistant.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
Friday, August 12, 2011
Update - direct from Meagan - dated August 11
Dear All,
This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~
So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.
On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.
This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.
Updates will follow.
Much love,
Meagan
This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~
So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.
On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.
This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.
Updates will follow.
Much love,
Meagan
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".
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.
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...
Subscribe to:
Posts (Atom)