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.
Showing posts with label brain tumor management. Show all posts
Showing posts with label brain tumor management. Show all posts
Saturday, October 1, 2011
Thursday, September 29, 2011
Post-treatment blues
Meagan is doing fine physically after the gammaknife treatment today. Even though they zapped five tumors instead of the anticipated two. Typically, it takes 24 hours for side effects to emerge. Right now she is just experiencing fatigue.
Emotionally, she was a wreck most of the afternoon. She's got her feet back underneath her at the moment. But it was a pretty big emotional hurricane. The discovery of three new brain tumors emerging in the last ten days is not a good sign. It implies there are many more cancer "seeds" in the brain "soil" just waiting to germinate or already underway. When the load gets large, spot zapping no longer works. So the next, last step to control them would be whole brain radiation. You only get one shot at that. We won't know for another thirty days (the follow-up scan) or if symptoms arise if that is the case, but if one is in to tea leaf reading, you'd bet we will see many more. Whole brain radiation is not a cure, and comes with a set of side effects. Hair loss (which shouldn't be an issue as she will lose it anyway if she starts chemo in ten days), fatigue, nausea (controllable) and 20% of people get immediate mental deficit effects (inability to multi-task, memory issues). We already have enough of that going on - so it is a frightening prospect to her.
It also put the issue of mortality squarely in play and how much time she has left and whether continued treatment is worthwhile. We are also fighting this cancer on many fronts - the cancer is likely growing in the non-treated areas of her spine and in other places. Suffice to say it was a long, draining, and emotionally charged discussion. I spent a lot of time reminding her of her own words in her eloquent emails, especially how she wants this to end assuming it goes that way - with grace, dignity, appreciation and a "lovely" good-by.
I am exhausted. She is spent.
Emotionally, she was a wreck most of the afternoon. She's got her feet back underneath her at the moment. But it was a pretty big emotional hurricane. The discovery of three new brain tumors emerging in the last ten days is not a good sign. It implies there are many more cancer "seeds" in the brain "soil" just waiting to germinate or already underway. When the load gets large, spot zapping no longer works. So the next, last step to control them would be whole brain radiation. You only get one shot at that. We won't know for another thirty days (the follow-up scan) or if symptoms arise if that is the case, but if one is in to tea leaf reading, you'd bet we will see many more. Whole brain radiation is not a cure, and comes with a set of side effects. Hair loss (which shouldn't be an issue as she will lose it anyway if she starts chemo in ten days), fatigue, nausea (controllable) and 20% of people get immediate mental deficit effects (inability to multi-task, memory issues). We already have enough of that going on - so it is a frightening prospect to her.
It also put the issue of mortality squarely in play and how much time she has left and whether continued treatment is worthwhile. We are also fighting this cancer on many fronts - the cancer is likely growing in the non-treated areas of her spine and in other places. Suffice to say it was a long, draining, and emotionally charged discussion. I spent a lot of time reminding her of her own words in her eloquent emails, especially how she wants this to end assuming it goes that way - with grace, dignity, appreciation and a "lovely" good-by.
I am exhausted. She is spent.
Tuesday, September 27, 2011
Off to results of MRI
a little tension this morning, even if we know of the possible outcomes. We see Dr. Kaplan at 9am. And then to head to Bakery Nouveau in West Seattle to commiserate or celebrate.
There is other tension too. Walking that fine line between being supportive and clarifying and "correcting" is terribly difficult. I have been reasonably successful. I failed yesterday. Being corrected is no fun, we all know that. Regrettably, Meagan's brain insults have given her poor memory, recall and the ability to articulate what she knows in her head. So not just facts and figures can be off (numbers for sure), but scenarios, explanations, and background discussions in the retelling. I've written before how often I spend going over and over what the process is or what our agenda is or what happened and will happen.
Last night, after she essentially made up some things to support what was in fact a true outcome, I did correct her. I only do this about one in five times, as I know most of the time it doesn't matter. But it was one too many last night, and it triggered a wave of emotion, discussion and tears, which linger this morning. I felt so bad, and feel so bad for her - this incredibly bright woman who has been affected by all the treatments and medications and cancer - to have to deal with the inability to get things clear. I'm just going to do my level best not to correct her anymore - unless it is a life or death issue. Her self-esteem and identity are too fragile and important to mess with by making sure things are factually correct.
I just need to find more patience and zip the lip.
There is other tension too. Walking that fine line between being supportive and clarifying and "correcting" is terribly difficult. I have been reasonably successful. I failed yesterday. Being corrected is no fun, we all know that. Regrettably, Meagan's brain insults have given her poor memory, recall and the ability to articulate what she knows in her head. So not just facts and figures can be off (numbers for sure), but scenarios, explanations, and background discussions in the retelling. I've written before how often I spend going over and over what the process is or what our agenda is or what happened and will happen.
Last night, after she essentially made up some things to support what was in fact a true outcome, I did correct her. I only do this about one in five times, as I know most of the time it doesn't matter. But it was one too many last night, and it triggered a wave of emotion, discussion and tears, which linger this morning. I felt so bad, and feel so bad for her - this incredibly bright woman who has been affected by all the treatments and medications and cancer - to have to deal with the inability to get things clear. I'm just going to do my level best not to correct her anymore - unless it is a life or death issue. Her self-esteem and identity are too fragile and important to mess with by making sure things are factually correct.
I just need to find more patience and zip the lip.
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 17, 2011
What a difference a year makes...
I've written about "Scanxiety" before. It used to be that from the day of the scan until we got the results, there would be a lot of tension. We'd be hoping for clean scans, and when we got the news (which to this point has always been bad) there would be a lot of sadness, anger and worry. We've also had a few false messages about the implications of the results - such as from her last spinal column CT scans, when we went from an initial communication over the phone of "untreatable", to "possibly treatable in a couple months with chemotherapy", to "treatable with Tomo therapy radiation".
Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.
So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.
But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.
Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.
So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.
But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.
Friday, September 16, 2011
Another MRI in the bag...
Got the brain MRI done today. Other than the hour delay, everything went well. She still complains about how cold they keep all these radiation and scanning machines. Despite warm blankets, she is never warm enough. It's also always amazing how much total time is required for a 45 minute actual scan. We left the house at 12:45 and got home at 4:45. What a way to blow an afternoon. At least I got a nice bike ride around Mercer Island with a friend this morning while Meagan was with friends. It was very pleasant out and great company.
Daily Tomo therapy radiation is done for now - last treatment yesterday. Will miss that crew and facility - such a contrast to the big Swedish Cherry Hill campus we were at today for the MRI.
She took another tumble yesterday. Just scrapes, nothing serious. She is sporting a very impressive set of bruises though on her knees and left wrist. She's pretty unstable walking, but maybe now that she's done with the radiation treatments, it will get better.
So we wait for the results meeting on Monday afternoon. We will try to stay distracted and not project "what if" results. Meagan just needs a good weekend of downtime and rest - she is pretty worn out from the radiation treatments.
I could use some sleep...
Daily Tomo therapy radiation is done for now - last treatment yesterday. Will miss that crew and facility - such a contrast to the big Swedish Cherry Hill campus we were at today for the MRI.
She took another tumble yesterday. Just scrapes, nothing serious. She is sporting a very impressive set of bruises though on her knees and left wrist. She's pretty unstable walking, but maybe now that she's done with the radiation treatments, it will get better.
So we wait for the results meeting on Monday afternoon. We will try to stay distracted and not project "what if" results. Meagan just needs a good weekend of downtime and rest - she is pretty worn out from the radiation treatments.
I could use some sleep...
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.
Saturday, September 3, 2011
To clarify or not...
One of the challenges Meagan faces is around memory and communication. In some ways she is as sharp as ever - remembering names and events from long ago. Her shorter term memory though has changed. She will be describing something which took place - and one of two things will occur. She will not remember the details and will make stuff up to suit her narrative, and then look to me for validation. Or even though I know she knows inside what she means, what she says will come out differently than what she sees in her head. That tends to particularly happen when it comes to time, dates and numbers.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
Friday, August 26, 2011
Treatable...uncurable - what gives?
The state of cancer treatment is still in its infancy. The big three modes (surgery, radiation, chemotherapy) are still the most used (and most toxic and harmful), even if mostly successful. The emerging treatment of targeted gene therapy and use of the body's own immune system to kill off the cancer (after first finding a way to "open the gate" to the cancer cell as it were), is still a long way from proving effective or creating a durable response. If you have an immune system cancer such as melanoma you are really screwed - because if your body's immune system can't defeat the cancer or the latest therapies don't work for you (as is the case with Meagan), then you are buying time. And you have to use the old line methods (I hate to even call them "treatments") to control the cancer as long as you can.
In her last email Meagan made an observation that she had been given a little hope because we had been told the cancer was incurable, but then another doctor had offered an option which might help the cancer in her spine (the Tomo Therapy radiation treatment - which she has started). I don't edit or correct her emails - after all when it takes her 2-4 hours to write the darn thing who am I to play editor. It's the overall content and tone of her emails which count, not the details. That is among the many reasons I write this blog (but not to correct my wife!!). I am trying to do many things (it has evolved as this adventure has continued), some of which may be useful to people down the road when they become caregivers or cancer patients (probably most of us). Besides helping everyone understand the particulars of how Meagan is doing and her experiences, it is also to describe the impact on us as human beings and husband and wife, the medical processes and decisions, and the real life issues which come up when you are dealing with cancer.
So one point of clarification to her past email. We know that her cancer is incurable. There is the slimmest of possibilities that she lives long enough that some drug gets approved that she is able to take which will give her some long term durable remission. But drug approvals take a very long time. All the drugs in the melanoma development pipeline are targeting very specific genetic mutations, which we know she does not have - so there would need to be some new development of a drug in the near term and it would have to go through a very fast track process to be approved - which in rough terms would mean 2-3 years. She likely does not have even close to that much time. She is ineligible for any clinical trials due to her brain tumors and seizures - so she can't jump to the head of any line of research drugs.
She is aware of all this - even if she forgets or gets fuzzy on the details. She realizes that we are in a situation of tumor management - slash, burn or poison the tumors as long as you can to extend your life at as high a quality as you can. Those methods are not really treatments per se, they are methods to keep the disease in check in some way. So they are treatments without an expectation of cure. They do matter for sure. Because unchecked tumor growth eventually causes death - but before it does so it can cause a lot of debilitating effects. That is why the news we initially got - that the cancer had spread to her spinal column and that it was untreatable (not, in her words, "incurable") was so devastating, and why the emotional swing was so dramatic when we found out there might in fact be a treatment (the Tomo Therapy radiation to the spine) that would have some effect on the tumor growth there. It is why this last three weeks has been the hardest part of her life (because thankfully she doesn't remember anything about the stroke or craniotomy or seizures). Because once it is untreatable and you have to let the disease takes its course - then all that is available to you is pain management. If you are "lucky" you get the disease in a place that doesn't cause pain (such as the liver). Having cancer in the spinal column is a really bad draw of the cards (even if not all that surprising given the cancer is in her brain and it's all connected). Because the way it advances in the spinal column is by growing and putting pressure on nerves. That can cause many things, well before it advances enough to do you in. Like pain, and loss of body function below the area on which the tumor is impinging.
So we like this new "treatment". It offers the possibility of control of the spinal column cancer, in the area being treated. She also realizes this is only affecting the area under treatment - cancer could already be growing elsewhere in her spinal column or in her brain (we know it is growing elsewhere in her body too, but those areas seem benign for the moment). So what is likely going to be our schedule over the next number of months is rounds of scans and treatments. She will complete this treatment by mid-September. She then has a brain MRI scheduled as a thirty day follow-up to her last brain zappage. If they find anything they will treat it (zap it). Thirty days after the completion of the Tomo Therapy radiation they will do another detailed MRI of her spinal column. If they find anything, they will zap it.
So it's a cycle of scan and zap. She's already being poisoned - she is on the chemotherapy called Temodar. It's possible Kaplan might want to switch to a different one in a month or so - which is more toxic and has more side effects.
Her biggest concerns at this stage are loss of mind and pain. Continued zappage of the brain takes its toll (because as targeted as the Cyberknife is, they take a bit of margin, and that is loss of brain function). If the cancer really blooms there and she has to do whole brain radiation, that is a scarier proposition. We are hopeful the Tomo Therapy radiation controls the cancer in her spinal column because she does not do well on pain medication and it will make her loopier than she cares for.
So we are realistic about the nature of the disease. She understands possible paths, although does not want to think about them. Nor do I. She very much is trying to live in the now and appreciate and enjoy what she has - and going through a round of treatment that might be relatively benign is a good thing.
We knew she had malignant cancer the first of July of last year. At that time we thought she had breast cancer. It was almost one year ago - September 1st - that we got the call from Kaplan to tell us that it was not metastatic breast cancer (a tough enough battle but one which most women are winning) but metastatic melanoma. That meant that she had metastatic melanoma for at least the prior four months before the July diagnosis (she first identified the lump on her breast in April). So she has unofficially had Stage IV melanoma for over 17 months now. And still alive to tell the tale and we are not expecting anything imminent in the way of a near term demise. Believe it or not that puts her in the category of a long term survivor of this disease. Especially given that it is in her central nervous system. So we are grateful that she has made it this far. And that it appears we still have a ways to march ahead.
Which we could not do without the love and support of all our family and friends.
In her last email Meagan made an observation that she had been given a little hope because we had been told the cancer was incurable, but then another doctor had offered an option which might help the cancer in her spine (the Tomo Therapy radiation treatment - which she has started). I don't edit or correct her emails - after all when it takes her 2-4 hours to write the darn thing who am I to play editor. It's the overall content and tone of her emails which count, not the details. That is among the many reasons I write this blog (but not to correct my wife!!). I am trying to do many things (it has evolved as this adventure has continued), some of which may be useful to people down the road when they become caregivers or cancer patients (probably most of us). Besides helping everyone understand the particulars of how Meagan is doing and her experiences, it is also to describe the impact on us as human beings and husband and wife, the medical processes and decisions, and the real life issues which come up when you are dealing with cancer.
So one point of clarification to her past email. We know that her cancer is incurable. There is the slimmest of possibilities that she lives long enough that some drug gets approved that she is able to take which will give her some long term durable remission. But drug approvals take a very long time. All the drugs in the melanoma development pipeline are targeting very specific genetic mutations, which we know she does not have - so there would need to be some new development of a drug in the near term and it would have to go through a very fast track process to be approved - which in rough terms would mean 2-3 years. She likely does not have even close to that much time. She is ineligible for any clinical trials due to her brain tumors and seizures - so she can't jump to the head of any line of research drugs.
She is aware of all this - even if she forgets or gets fuzzy on the details. She realizes that we are in a situation of tumor management - slash, burn or poison the tumors as long as you can to extend your life at as high a quality as you can. Those methods are not really treatments per se, they are methods to keep the disease in check in some way. So they are treatments without an expectation of cure. They do matter for sure. Because unchecked tumor growth eventually causes death - but before it does so it can cause a lot of debilitating effects. That is why the news we initially got - that the cancer had spread to her spinal column and that it was untreatable (not, in her words, "incurable") was so devastating, and why the emotional swing was so dramatic when we found out there might in fact be a treatment (the Tomo Therapy radiation to the spine) that would have some effect on the tumor growth there. It is why this last three weeks has been the hardest part of her life (because thankfully she doesn't remember anything about the stroke or craniotomy or seizures). Because once it is untreatable and you have to let the disease takes its course - then all that is available to you is pain management. If you are "lucky" you get the disease in a place that doesn't cause pain (such as the liver). Having cancer in the spinal column is a really bad draw of the cards (even if not all that surprising given the cancer is in her brain and it's all connected). Because the way it advances in the spinal column is by growing and putting pressure on nerves. That can cause many things, well before it advances enough to do you in. Like pain, and loss of body function below the area on which the tumor is impinging.
So we like this new "treatment". It offers the possibility of control of the spinal column cancer, in the area being treated. She also realizes this is only affecting the area under treatment - cancer could already be growing elsewhere in her spinal column or in her brain (we know it is growing elsewhere in her body too, but those areas seem benign for the moment). So what is likely going to be our schedule over the next number of months is rounds of scans and treatments. She will complete this treatment by mid-September. She then has a brain MRI scheduled as a thirty day follow-up to her last brain zappage. If they find anything they will treat it (zap it). Thirty days after the completion of the Tomo Therapy radiation they will do another detailed MRI of her spinal column. If they find anything, they will zap it.
So it's a cycle of scan and zap. She's already being poisoned - she is on the chemotherapy called Temodar. It's possible Kaplan might want to switch to a different one in a month or so - which is more toxic and has more side effects.
Her biggest concerns at this stage are loss of mind and pain. Continued zappage of the brain takes its toll (because as targeted as the Cyberknife is, they take a bit of margin, and that is loss of brain function). If the cancer really blooms there and she has to do whole brain radiation, that is a scarier proposition. We are hopeful the Tomo Therapy radiation controls the cancer in her spinal column because she does not do well on pain medication and it will make her loopier than she cares for.
So we are realistic about the nature of the disease. She understands possible paths, although does not want to think about them. Nor do I. She very much is trying to live in the now and appreciate and enjoy what she has - and going through a round of treatment that might be relatively benign is a good thing.
We knew she had malignant cancer the first of July of last year. At that time we thought she had breast cancer. It was almost one year ago - September 1st - that we got the call from Kaplan to tell us that it was not metastatic breast cancer (a tough enough battle but one which most women are winning) but metastatic melanoma. That meant that she had metastatic melanoma for at least the prior four months before the July diagnosis (she first identified the lump on her breast in April). So she has unofficially had Stage IV melanoma for over 17 months now. And still alive to tell the tale and we are not expecting anything imminent in the way of a near term demise. Believe it or not that puts her in the category of a long term survivor of this disease. Especially given that it is in her central nervous system. So we are grateful that she has made it this far. And that it appears we still have a ways to march ahead.
Which we could not do without the love and support of all our family and friends.
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.
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...
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