No medical appointments today. Tomorrow we see Dr Kaplan.
First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.
The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...
We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.
In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.
Showing posts with label melanoma treatment options. Show all posts
Showing posts with label melanoma treatment options. Show all posts
Wednesday, October 26, 2011
Saturday, October 1, 2011
Resilience
Meagan's ability to bounce back from bad news is really remarkable. After a tumultuous day on Thursday, yesterday she was pretty calm and serene. She hasn't altered the current facts to suit her needs (as she has done sometimes in the past, when she would take the tiniest bit of hope and expand that to be the "base case"), rather, she is accepting where she is right now, and focusing on the present. She was able to use her computer and start arranging a few get-togethers, and that always gives her something to look forward to and a sense of accomplishment, even though it takes quite a while for her to write even a short email. We are shooting for going up to our place at Decatur Island next Thursday to Sunday, assuming everything goes well with the surgery on Monday and she is feeling up to it. She really wants to be up there - she loves it in the Fall and it would be a good getaway before starting chemo.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
After a relatively slow start to the day, which is understandable, for most of Friday she was alert, lucid (a point she queried me on several times), and energetic. By around 4pm though she started to fade a bit, and cognitive capabilities diminished somewhat until bedtime. Probably just being tired, as she had no nap, rather than delayed onset of brain radiation side effects. We'll see how she is over the weekend - we have no plans and will go at her pace. Her knee is still bothering her from her falls of several weeks ago - so I've been icing the right one several times per day (which she truly HATES - this woman does not like cold) and giving her ibuprofen regularly. Walking is definitely out, and she is not too happy about that.
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.
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.
Tuesday, August 30, 2011
Radiation Treatment - update
The treatment continues to go smoothly. Meagan likes the staff and doctor very much. The Swedish Ballard Cancer Institute radiation facility is very small - a brand new free standing building directly across the street from the hospital's main entrance. Its scale is quite nice - personal and non-institutional. She's become quite friendly (are you surprised?) with the technical people who set her up each day and zap her. The treatment itself is painless and her only complaint is that it does not last long enough so she can't fall asleep and dream about her coat of arms.
I think we are starting to see some signs of budding side effect fatigue though. Yesterday after treatment she went to lunch and walked around Ballard quite a bit, and then came home and a had a chat with a friend. By 4:45 she was wiped out and slept from 5pm to 6:30pm, when I finally woke her. What will probably make sense is for her to take a nap right after lunch so she can be more present the rest of the day.
Radiation treatment is kind of weird in that it is such an invisible and non-consequential treatment (except when aimed at the brain). So we are in this funny kind of suspended zone - we have this new daily routine, which is not unpleasant - and we assume the treatment is working, but in the meantime we know the cancer is doing its thing elsewhere and there is nothing we can do but wait. With other treatments, such as surgeries, there are more visible signs of the effects of treatment and there is action involved with follow-up care. Or if she is in the hospital, there are clearly a lot of things to do. With radiation treatment - you watch her nap. And try to catch deliveries or people at the front door before the dogs become aware and they start barking like crazy and waking her up. I may post a "Do Not Disturb" sign at our front door when she is napping...or lock the dogs outside in the backyard.
I think we are starting to see some signs of budding side effect fatigue though. Yesterday after treatment she went to lunch and walked around Ballard quite a bit, and then came home and a had a chat with a friend. By 4:45 she was wiped out and slept from 5pm to 6:30pm, when I finally woke her. What will probably make sense is for her to take a nap right after lunch so she can be more present the rest of the day.
Radiation treatment is kind of weird in that it is such an invisible and non-consequential treatment (except when aimed at the brain). So we are in this funny kind of suspended zone - we have this new daily routine, which is not unpleasant - and we assume the treatment is working, but in the meantime we know the cancer is doing its thing elsewhere and there is nothing we can do but wait. With other treatments, such as surgeries, there are more visible signs of the effects of treatment and there is action involved with follow-up care. Or if she is in the hospital, there are clearly a lot of things to do. With radiation treatment - you watch her nap. And try to catch deliveries or people at the front door before the dogs become aware and they start barking like crazy and waking her up. I may post a "Do Not Disturb" sign at our front door when she is napping...or lock the dogs outside in the backyard.
Thursday, August 18, 2011
Made it through the long MRI
Checked in at 4:45 last night, she was in the machine by 5:15 and didn't emerge until around 8:30pm. Longest MRI she has been through yet. No hitches. They aren't looking for anything new - that was all on the CT scan - this is a fine grain that should pinpoint exact location from 3-D perspective of each tumor and it's precise measurements.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.
The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.
Saturday, August 13, 2011
Post Treatment Reflections and thoughts on Meagan's letter
There is a big difference between getting about 5 1/2 hours sleep and almost 8 1/2 hours sleep. I feel quite a bit better today; yesterday, I was not so good. The day before a scan or treatment I am usually too hyped up to sleep much. So by 8pm last night I was yawning a lot. Meagan was tired too - even though she napped throughout most of the procedure yesterday and most of the afternoon. I'm glad it went well, obviously, now we just wait and see how long it takes before the radiation does its thing. The thing about radiation and melanoma is that there is about a 70% success rate of what they call "local control". That means in 30% of the cases the melanoma ducks the radiation and continues to grow. You always have the option at that point of hitting it again. But t's a tough beast and tends to be radiation resistant.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.
Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.
More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.
What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.
Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.
I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.
Thursday, August 4, 2011
Last night was particularly rugged
There seems to be a pattern based on our visits to Dr. Kaplan when we get (bad) news. Actually we've never had good news coming out of his office. But Megan aways feels comforted by him, even though he is delivering bad news. He makes it seem not so scary, somehow gentle and hopeful. Not hopeful in the sense that she believes she is going to make it, but hopeful in the sense she will have enough time, that it's not imminent (like from a tumor bursting, although that could happen), and that she will get her projects done. In the course of this discussion, data and information is provided - and of course therein lies the source of potential conflict later - she hears one thing and I hear another.
We did then go and have lunch and then walked all around Greenlake. We talked candidly and openly about everything. I thought we were on the same page in terms of prognosis, timeframe, treatment steps and expectations, and in agreement on how it should end - hopefully gracefully, gently, surrounded by love and "sparkles".
When we got home, after talking with the boys, and she overhearing one of my conversations - she got pretty upset. Mostly related to the timing (she thought it was longer and my recollections of the discussion were more analytical and clinical while hers were more diffuse) and clinging to ways to have hope (not hope for making it but hope for living long enough that people weren't looking at their watch). Time has, self-admittedly, taken on a new concept for her since the stroke. She doesn't have a sense of it at all. So I think this, coupled with some challenges in comprehension, led her to having the full brunt of the news really sink in after we got home. So there were several hours last night when she was pretty over the top distressed.
But she has a remarkable capacity to rally and the resilience to adjust and move forward. We talked about how even if she lost the capacity to read or write that we could get people in to read to her or take dictation. She is reading a book called, "Dying Well" and I think that is helpful. Later in the evening she looked up and asked if I would be sleeping next to her when she is in a hospital bed set up in our living room (of course I will as long as it's a queen size). Then later she looked up and said, maybe not in the same bed, but next to me, apparently after hitting the section about hygiene and how it goes in the later stages. So she still has her sense of humor and is still a prissy girl.
We both agreed we have no idea how to do this, or do it well. We are just mucking through this process, and an unfortunate side effect is distress. But as Kaplan said during our visit, it wouldn't be normal if you didn't have periods of time when you weren't a mess - because this is tough stuff, the toughest ever.
So onward. I have done all the research on the GammaKnife process and can help Meagan understand it when we meet with our radiation oncologist today, Dr. Vermeulen. That is a more complex process than the whole brain radiation. I really can't even speculate which one will be done - Dr. Vermeulen had not read the MRI results when she had the phone conversation with Dr. Kaplan; she only gave a rough guess about a recommendation based on his description. I expect she will be certain today. The GammaKnife is a one day procedure, the whole brain radiation is done over a number of days. In any event it looks like we will be around to enjoy our beautiful garden and the nice days of August.
We did then go and have lunch and then walked all around Greenlake. We talked candidly and openly about everything. I thought we were on the same page in terms of prognosis, timeframe, treatment steps and expectations, and in agreement on how it should end - hopefully gracefully, gently, surrounded by love and "sparkles".
When we got home, after talking with the boys, and she overhearing one of my conversations - she got pretty upset. Mostly related to the timing (she thought it was longer and my recollections of the discussion were more analytical and clinical while hers were more diffuse) and clinging to ways to have hope (not hope for making it but hope for living long enough that people weren't looking at their watch). Time has, self-admittedly, taken on a new concept for her since the stroke. She doesn't have a sense of it at all. So I think this, coupled with some challenges in comprehension, led her to having the full brunt of the news really sink in after we got home. So there were several hours last night when she was pretty over the top distressed.
But she has a remarkable capacity to rally and the resilience to adjust and move forward. We talked about how even if she lost the capacity to read or write that we could get people in to read to her or take dictation. She is reading a book called, "Dying Well" and I think that is helpful. Later in the evening she looked up and asked if I would be sleeping next to her when she is in a hospital bed set up in our living room (of course I will as long as it's a queen size). Then later she looked up and said, maybe not in the same bed, but next to me, apparently after hitting the section about hygiene and how it goes in the later stages. So she still has her sense of humor and is still a prissy girl.
We both agreed we have no idea how to do this, or do it well. We are just mucking through this process, and an unfortunate side effect is distress. But as Kaplan said during our visit, it wouldn't be normal if you didn't have periods of time when you weren't a mess - because this is tough stuff, the toughest ever.
So onward. I have done all the research on the GammaKnife process and can help Meagan understand it when we meet with our radiation oncologist today, Dr. Vermeulen. That is a more complex process than the whole brain radiation. I really can't even speculate which one will be done - Dr. Vermeulen had not read the MRI results when she had the phone conversation with Dr. Kaplan; she only gave a rough guess about a recommendation based on his description. I expect she will be certain today. The GammaKnife is a one day procedure, the whole brain radiation is done over a number of days. In any event it looks like we will be around to enjoy our beautiful garden and the nice days of August.
Wednesday, August 3, 2011
Drum roll...
We meet with Dr.Kaplan at 11:20. Which means it could be noon. We arrive about a 1/2 hour early so that Meagan can have her blood drawn, and this time around she has to have it accessed via her port and have that flushed - it needs to be flushed out every 6 weeks if not used for treatment.
Our game plan is to review the questions we have for him this morning. That will be hard. But we need to talk about the MRI results (and resulting plan), any systemic, whole body treatment which might be possible beyond what she is already on (the Temodar), and tumor identification and management (does she have a CT scan of the body or wait until symptoms present themselves and then we address them?). I do know that some tumors can be dealt with via radiation (Cyberknife), others by surgery. Meagan wants to get tumors out as soon as they can be identified, especially if they have the potential to be life threatening. Of course, at some point they won't be able to be removed or zapped, but here's hoping that is down the road and we buy time.
I'm bringing handkerchiefs. Our plan afterward is to take a walk around Greenlake and then have lunch. Being out and around people helps. First though, we will talk to the boys.
At some point we'll come home and I'll post what the story is...
Our game plan is to review the questions we have for him this morning. That will be hard. But we need to talk about the MRI results (and resulting plan), any systemic, whole body treatment which might be possible beyond what she is already on (the Temodar), and tumor identification and management (does she have a CT scan of the body or wait until symptoms present themselves and then we address them?). I do know that some tumors can be dealt with via radiation (Cyberknife), others by surgery. Meagan wants to get tumors out as soon as they can be identified, especially if they have the potential to be life threatening. Of course, at some point they won't be able to be removed or zapped, but here's hoping that is down the road and we buy time.
I'm bringing handkerchiefs. Our plan afterward is to take a walk around Greenlake and then have lunch. Being out and around people helps. First though, we will talk to the boys.
At some point we'll come home and I'll post what the story is...
Monday, August 1, 2011
Scanxiety (squared)
Meagan is pretty much a wreck tonight. Probably will be all the way until our meeting with Kaplan on Wednesday. Just trying to hold her and support her - this waiting is terrible and it's also the sinking in recognition that this could be a pivot point. Maybe not, it could be the next scan. But needless to say, this is not fun.
Friday, July 15, 2011
The Good, The Bad, and the Ugly
The good is that Meagan is feeling relatively good these days. So good that she has a hard time believing that she really has this horrible disease. Unlike many other cancers, she has not had to endure lengthy, debilitating treatments. Her "events" have been off the meter bad, but did not leave her feeling badly for any significant period of time. Her surgeries have been relatively minor, with localized pain, but requiring no more than ibuprofen. So after 15 months with living with the disease, a disease that can be very debilitating and require super hard treatments, she has not had that bad a quality of life. We hope that continues for some period of time. But I can sense the frustration and disconnect within her. She feels capable of walking, of being productive, even though she has some limitations cognitively and physically (no driving). So it's a bit like being in the eye of a hurricane - some events have passed by with severe consequences, there is this temporary respite (even the chemo she is on seems to have little side effects, not even much fatigue), but I at least know we have the rest of the hurricane to come.
The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.
The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.
Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?
Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her - coupled with a discussion of quality of life and probability of success. Ugly...
The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.
The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.
Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?
Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her - coupled with a discussion of quality of life and probability of success. Ugly...
Saturday, June 18, 2011
A Tough Day Emotionally
While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.
I used to think the two hardest general questions were: "what is the meaning of life?"; and, "what is my purpose?". Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".
Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,
"Is there any hope for me?"
"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".
Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.
I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug.
"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.
The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary.
So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.
I used to think the two hardest general questions were: "what is the meaning of life?"; and, "what is my purpose?". Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".
Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,
"Is there any hope for me?"
"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".
Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.
I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug.
"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.
The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary.
So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.
Thursday, May 5, 2011
Next Up
Meagan's sodium levels have stabilized and Dr. Kaplan has cut her dosage of salt tabs in half. We'll keep it up until the current prescription is empty, likely by middle of next week. She continues to enjoy Fritos, potato chips, corn flakes and high protein Odwalla drinks (they are laden with sodium). Overall her appetite is great, thanks in large part to the delicious meals being provided by the Faeries, for which we are very grateful.
Tuesday, May 3, 2011
The Calm before...
Meagan is doing really well at home recovering from the stroke. She actually had fun with her speech therapist yesterday (who works on cognitive issues as well). Probably because we discussed focusing on the things that matter most to her right now - which is all about connecting with friends. So she is practicing typing with the goal of getting back on Facebook. She has enjoyed our new schedule - can't get started too early (nothing before 10:00am) - with then either doctor visits or home therapy and then visits with friends and family. She worries a lot about me, especially when she realized she won't drive again, because she doesn't want to be a burden, but I assured her we can make any appointment happen and me driving her or she walking as far as University Village were all doable.
We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.
Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.
We see Dr. Kaplan today to discuss next steps and get a sodium check. Most important in the short term is brain radiation. I've been reading up a lot on it. They have lots of options for narrow focused radiation beam treatments. She will have to get an MRI with contrast so they can pinpoint where the remaining cancer cells and other tumor is located. But malignant brain tumors are tough beasts. Melanoma in particular can be radiation resistant. And it's almost impossible to get every cell, meaning regrowth is highly probable. Whole brain radiation is also possible, but the side effects are undesirable. So it's a tough problem, with no great answer. In the meantime her melanoma is unchecked. Somehow we have to get tumors removed as much as possible, get the brain swelling down post radiation with no new tumors emerging, so we can have a shot at Interleukin-2 - the last remaining systemic therapy that has a chance at shutting down the disease. Apparently we can't do the IL-2 until the brain inflammation is down, so that the IL-2 doesn't confuse inflamed brain tissue with the cancer.
Thankfully she is in a positive frame of mind, anxiety free and focused on her friend and the goodness around her. One of the beneficial side effects of a brain insult and surgery. But for those of us who haven't had that "happy pill", the road ahead looks daunting.
Tuesday, April 26, 2011
Day One of Rehab - a summary
One of the things I learned quickly today is that it is very easy to overtax Meagan. Especially when she is being asked to rewire neurons and learn new pathways to doing old activities. It was frustrating for her and just too much to have too many rehab people. That said, it really wasn't too much for a non-impaired person. But when you've received an insult to the brain, what you or I might think of as easy or normal is not.
We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.
The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.
It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.
We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.
The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.
It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.
Day One of Reahabilitation
Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.
Monday, April 25, 2011
Sunday, April 24, 2011
She's Home!
Meagan is happy being home. She got to kiss the dogs, although they nearly knocked her over (well, one did). She walked in her lovely garden on Casey's arm. Had a long talk with Casey. Ate high sodium Chinese food. I can't say our first night home was restful for me, but perhaps she will have a different take. She has to take pills at 9pm, midnight, 6am, 9am, noon and 6pm. So I have multiple alarms set. We also aren't letting her walk anywhere unaided, she's too unsteady and isn't used to her visual field deficit yet. So there was a 3am bathroom run. Bobbie Baker had a brilliant idea to get a baby monitor so when I am up and she wakes up she can call me and I can help her up and out of bed. We tested it at 6:15 this morning and it worked perfectly although scared the heck out of me as I was drinking my coffee. But she's back in bed and hopefully will sleep until 9am. It is a very unnerving experience to be in such a quiet environment after nearly two weeks of noise. Today will be a day of calm, and adjusting to her surroundings. We did have railings installed on the front porch steps, and I hope to get her out and down the block at some point today. But overall a smooth transition, she's happy to be home, in her own bed and chair, and with two of her men and dogs.
Friday, April 8, 2011
We are going...
No matter if the government shuts down or not we are going to Bethesda - they will see us. That is a load off my mind! Now we can get on with the dance and find a clinical trial that is appropriate!
Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can't be on if you have a brain tumor. We didn't really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.
At least by Monday afternoon we'll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.
Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can't be on if you have a brain tumor. We didn't really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.
At least by Monday afternoon we'll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.
Thursday, April 7, 2011
A Plan, subject to...
All the logistics are set for us to go to Bethesda next week. Got the package from the National Cancer Institute (NCI). Pathology slides Fed Ex'd yesterday, genetic blood tests faxed yesterday, brain MRI scheduled for tomorrow, and Monday we visit our oncologist (to review the results of the brain MRI) and pick up the CDs of all the CT, PET and MRI scans and linked reports to hand carry to her appointment. Check, check and double check. What could possibly go wrong?
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