again, except this time it is the Nordstrom Medical Tower at Swedish for a visit to Seattle Radiology for an MRI this afternoon of her neck and right brachial plexus. Both of these are location areas which would generate nerve sensations resulting from tumors pressing on areas of the upper spine.Then we meet with Kaplan tomorrow morning at 9:00a.m. to discuss the results. Many things on the plate:
1. Brain tumor treatment - gamma knife this Thursday.
2. Discuss excision of tumor on her upper arm - she wants it out.
3. Start of chemotherapy.
4. What to do if there is anything showing up in the MRI.
5. Follow-up scans of tomo therapy treated spine.
Sequencing all this will be interesting...especially if she has to do chemo and radiation in parallel...
In the meantime it is just a lot to keep her apprised and steady. She was pretty upset last night as she knew she hadn't been thinking well yesterday and was having a hard time following things.
It was also a challenge this morning trying to figure out where her back pain was - the ibuprofen she's been on the last couple days to ease her arm pain has helped with her back (and knee) but she couldn't remember the location of the pain. Kind of makes it hard to figure out what areas to scan or whether to scan. And she can't remember the onset of the pain and whether it is fall-related or maybe cancer-related. I can see the difficulty ahead for many caregivers with loved ones who have memory issues - just figuring out what is going on and where is hard. And you can't just do a full body scan whenever something is amiss.
Breathing slowly today....
Showing posts with label Tomo therapy radiation treatment. Show all posts
Showing posts with label Tomo therapy radiation treatment. Show all posts
Monday, September 26, 2011
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.
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...
Wednesday, September 14, 2011
"Is it worth it?"...
Her back was painful yesterday, and she noticeably winced when I was parking the car at the treatment center and bumped the curb (not that hard mind you) and the car jolted a bit. She had taken some ibuprofen just before we left home and it hadn't kicked in yet. She then asked when the radiation was supposed to reduce the spinal tumor so it wasn't impinging on the nerve. I thought the doctor had said about three weeks but wasn't sure.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.
I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults. I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.
We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.
Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.
I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.
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.
Thursday, September 1, 2011
One Year Anniversary
Today marks the one year anniversary from the time we got the call from Dr. Kaplan to tell us that is was metastatic melanoma. It ranks pretty high up there on the worst days of my life meter, followed two days later by us having to skype the boys separately and tell them.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
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.
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.
Wednesday, August 24, 2011
Meagan's Latest Update - The Day Before Spine Radiation Starts
Dear All,
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
Tuesday, August 23, 2011
Plan Finalized
11:30am, each day starting on Thursday (unless he can't get the plan completed by then, in which case it will be Monday). Still expect 3-4 weeks of daily treatment.
I think Meagan gets how this is a positive development in quality of life and not merely life extension. I don't think she realized that spinal tumors don't really cause end of life, although they can eventually, when they grow so much they impinge on the nerves going to vital organs. More typically, spinal column tumors lead to compression of the spinal cord, which causes pain (a lot) and usually loss of bodily functions below the areas involved. The presence of the tumors and cancer in the epidural space means the cancer is fully active in the spinal column and central nervous system (including the brain, which we knew). So when you can't treat the spinal column tumors, and you suffer the debilitating effects they cause, it usually means that when they emerge in other parts of the spinal column and brain, you decline further treatment, because you are extending life, but at a greatly reduced quality.
So this Tomo Therapy is fantastic news. It is a means of control of the tumors. If we can zap tumors we can keep her quality of life high and gain life extension. It is worth treating further brain tumors and other tumors. They can use the Tomo Therapy on other parts of the spinal column if necessary (but you only get one shot at each area - due to toxic radiation overload concerns). Between that and the Cyberknife, the radiologists have a pretty good arsenal to control the central nervous system tumors, as long as they emerge in a localized and smaller way. This technology development is really amazing. Yes, it is expensive. Yes, it makes our overall health care costs go up. But who would not want to have this treatment now that it is available?
I think Meagan gets how this is a positive development in quality of life and not merely life extension. I don't think she realized that spinal tumors don't really cause end of life, although they can eventually, when they grow so much they impinge on the nerves going to vital organs. More typically, spinal column tumors lead to compression of the spinal cord, which causes pain (a lot) and usually loss of bodily functions below the areas involved. The presence of the tumors and cancer in the epidural space means the cancer is fully active in the spinal column and central nervous system (including the brain, which we knew). So when you can't treat the spinal column tumors, and you suffer the debilitating effects they cause, it usually means that when they emerge in other parts of the spinal column and brain, you decline further treatment, because you are extending life, but at a greatly reduced quality.
So this Tomo Therapy is fantastic news. It is a means of control of the tumors. If we can zap tumors we can keep her quality of life high and gain life extension. It is worth treating further brain tumors and other tumors. They can use the Tomo Therapy on other parts of the spinal column if necessary (but you only get one shot at each area - due to toxic radiation overload concerns). Between that and the Cyberknife, the radiologists have a pretty good arsenal to control the central nervous system tumors, as long as they emerge in a localized and smaller way. This technology development is really amazing. Yes, it is expensive. Yes, it makes our overall health care costs go up. But who would not want to have this treatment now that it is available?
Sunday, August 21, 2011
Time
Everyone knows how Meagan is very much a social creature, who thrives on contact and connection with people - biological family, created family, and friends. It really defines her. She also does not want to hurt people's feelings - she is quite sensitive to that. Even in her best days she was constantly fretting about that - managing her calendar so that she could see the people she wanted and needed to. She would talk about the need to create time for herself to work on her Milton project (illuminating "Paradise Lost") and it was always a struggle to get enough time to do that and meet her social obligations (which were visits with people). Fortunately she had email and Facebook, and in the mornings and evenings she could catch up with people even if she couldn't see them in person.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.
Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.
Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:
August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.
So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.
We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.
Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.
All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.
Saturday, August 20, 2011
Identity
A friend sent me the book, "About Alice", by Calvin Trillin. It's a wonderful book, a love story really about his wife. Alice died of her cancer related treatments. One line she said in a speech really struck me - "the worst thing cancer can do is rob you of your identity". How true...
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
Friday, August 19, 2011
Thursday, August 18, 2011
New Treatment
Got the call from Dr. Vermeulen at Seattle Radiology. She reviewed the detailed MRI of Meagan's spine taken last night. Surprise, surprise! She does not want to do Cyberknife on the tumor near her tailbone. She (with Dr. Kaplan's concurrence) wants Meagan to go over to see Dr. Landis at Swedish's Ballard Cancer Institute where they have the latest, greatest, slickest radiation machine ever invented and undergo radiation on ALL TWELVE of her spinal tumors. It's called Tomo Therapy. It's like Cyberknife in that it precisely targets the tumors. But it can do more at a time. And uses real time CT imaging. Hopefully meaning fewer side effects on the surrounding areas. Apparently it's the only one in Seattle.
So we meet that team this coming Monday at 11:00am. I don't know what the treatment schedule will be. Dr. Vermeulen did say, "low and slow". In reading up on the treatment, the typical approach is 5 days a week for 4-6 weeks. Each treatment only lasts about 5 minutes. They do say you experience the same kind of overall side effects extended radiation treatment can bring - fatigue, anemia, and hair loss.
I consider this pretty good news. It is a preemptive strike on the spinal tumors. If it can shrink them, it means they can't grow to do damage or cause pain. It is not a cure and not systemic therapy - it is a way to zap the bad guys before they do bad things. More could emerge, anywhere in her body really. But rather than the wait and see approach we were operating under as of our last visit with Kaplan (because his next option was direct chemo in the spinal column but we have to wait for her brain to calm down from the Gamma Knife treatment), this is action. I like action.
So we meet that team this coming Monday at 11:00am. I don't know what the treatment schedule will be. Dr. Vermeulen did say, "low and slow". In reading up on the treatment, the typical approach is 5 days a week for 4-6 weeks. Each treatment only lasts about 5 minutes. They do say you experience the same kind of overall side effects extended radiation treatment can bring - fatigue, anemia, and hair loss.
I consider this pretty good news. It is a preemptive strike on the spinal tumors. If it can shrink them, it means they can't grow to do damage or cause pain. It is not a cure and not systemic therapy - it is a way to zap the bad guys before they do bad things. More could emerge, anywhere in her body really. But rather than the wait and see approach we were operating under as of our last visit with Kaplan (because his next option was direct chemo in the spinal column but we have to wait for her brain to calm down from the Gamma Knife treatment), this is action. I like action.
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