Thursday, September 29, 2011
Emotionally, she was a wreck most of the afternoon. She's got her feet back underneath her at the moment. But it was a pretty big emotional hurricane. The discovery of three new brain tumors emerging in the last ten days is not a good sign. It implies there are many more cancer "seeds" in the brain "soil" just waiting to germinate or already underway. When the load gets large, spot zapping no longer works. So the next, last step to control them would be whole brain radiation. You only get one shot at that. We won't know for another thirty days (the follow-up scan) or if symptoms arise if that is the case, but if one is in to tea leaf reading, you'd bet we will see many more. Whole brain radiation is not a cure, and comes with a set of side effects. Hair loss (which shouldn't be an issue as she will lose it anyway if she starts chemo in ten days), fatigue, nausea (controllable) and 20% of people get immediate mental deficit effects (inability to multi-task, memory issues). We already have enough of that going on - so it is a frightening prospect to her.
It also put the issue of mortality squarely in play and how much time she has left and whether continued treatment is worthwhile. We are also fighting this cancer on many fronts - the cancer is likely growing in the non-treated areas of her spine and in other places. Suffice to say it was a long, draining, and emotionally charged discussion. I spent a lot of time reminding her of her own words in her eloquent emails, especially how she wants this to end assuming it goes that way - with grace, dignity, appreciation and a "lovely" good-by.
I am exhausted. She is spent.
But emotionally that is a tough blow, it means rhe cancer is blooming pretty rapidly. At least for now they are on top of the brain tumors and catching them early and small. It does mean they will scan again in thirty days. And if there are more at that time, the treatment discussion moves to whole brain radiation versus spot treatment.
Trying to get her to stay focused on the present and not project too much. The neurologist was helpful and reassuring when we discussed the whole brain treatment. But Meagan is understandably upset.
Wednesday, September 28, 2011
I've written before about Question #1. "do you love me?". That's easy. Then there is Question #2 - "do you STILL love me?".
But then there is the zinger. Which I got tonight, after a long and good discussion about her condition and strengths and deficits. "Do you still love me as much as you used to?".
There is no respite for caretakers, from a logistical, physical, mental or emotional perspective.
Met with our surgeon this morning (Dr Hanson) and we are green light to get the arm tumor out on Monday afternoon. Then spent an hour at the eye doc trying to figure out how to correct her eyeglass and reading prescription again to deal with her blind spot and double vision when she reads. Tomorrow morning bright and early is the Gamma knife brain tumor treatment.
Meagan is a bit better emotionally today, thanks to the passage of time and some phone call help from a great friend with advice on how to cope with her loss of mental capability. She was just really overcome by the realization that she is not as sharp as she used to be and has all these issues with confusion, memory, and speaking (leaving out completely her deficit with regards to numbers and dates which she acknowledges and doesn't care about). Even in the car on the way home this afternoon she said something, and I repeated it, altering it to make it correct, and she said, "isn't that what I said?", to which I replied, "no", and then she said, "but that is what I thought I said". So, many many times she is thinking the right thing, but the words come out incorrectly, and she doesn't even know it. Fortunately she didn't get upset this time, it was more realization and curiosity. But over the last 36 hours there have been buckets of tears and she even said this morning how heartbreaking it was for her to realize she is not what she once was mentally. She forgets how often things get repeated or how much she is asked to repeat what she said, and even said to me at one point, "why didn't anyone tell me?". Well, we did, but she doesn't remember. So it feels all new - this realization of mental capacity change - making it more terrible than usual.
Of course I am working triple overtime trying to convince her that it doesn't matter, that people are looking at the core of who she is and the strengths she brings irrespective of mental capacity and that it's not important that she gets all the facts right and that it's ok if she needs slight tweaks in what she says. But it is still difficult - difficult for her to realize that sometimes she talks nonsense to her loved ones, difficult for her to think she might be being treated like the retarded cousin in the corner (her politically incorrect comparison, not mine!), and difficult for her to think that people can't trust or rely on what she says as being truthful. Her self image and self perception of being a sharp thinker is challenged and it is not pretty, especially when it is the case. Even yesterday she broke down in front of Kaplan after she said, "you know, I used to be a pretty sharp person". He was very kind and supportive, but didn't deny nor can anyone really deny what is taking place. She keeps asking if it's the meds or the stroke or the brain treatments and all the docs just shrug their shoulders - who knows? So it could very likely be a permanent state - although I've heard the new chemo she will start in a week or so doesn't have as much chemo brain impact. But then again, she gets her brain zapped tomorrow, so who knows what impact that will have - a fact she is acutely aware of.
Maybe some people could just accept their condition and be graceful and calm about it. But this is not the case with Meagan. It is tragic and hurtful and sad and generates a lot of emotional distress. To everyone around her regularly too (i.e., me and the boys).
Tuesday, September 27, 2011
There is other tension too. Walking that fine line between being supportive and clarifying and "correcting" is terribly difficult. I have been reasonably successful. I failed yesterday. Being corrected is no fun, we all know that. Regrettably, Meagan's brain insults have given her poor memory, recall and the ability to articulate what she knows in her head. So not just facts and figures can be off (numbers for sure), but scenarios, explanations, and background discussions in the retelling. I've written before how often I spend going over and over what the process is or what our agenda is or what happened and will happen.
Last night, after she essentially made up some things to support what was in fact a true outcome, I did correct her. I only do this about one in five times, as I know most of the time it doesn't matter. But it was one too many last night, and it triggered a wave of emotion, discussion and tears, which linger this morning. I felt so bad, and feel so bad for her - this incredibly bright woman who has been affected by all the treatments and medications and cancer - to have to deal with the inability to get things clear. I'm just going to do my level best not to correct her anymore - unless it is a life or death issue. Her self-esteem and identity are too fragile and important to mess with by making sure things are factually correct.
I just need to find more patience and zip the lip.
Monday, September 26, 2011
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....
Sunday, September 25, 2011
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
Friday, September 23, 2011
They are both living at home here in Seattle. We have done a bit of remodeling (actually just finishing) and they now have comfortable, adult size bedrooms on the main floor on the opposite side of the house from the master bedroom. Casey is occupying Meagan's old art studio, overlooking the backyard garden. Riley has an upstairs room which we've air conditioned to be useable all year round (it was not habitable in the summer), along with a connecting room on the main floor overlooking the front yard, which he will use as a studio.
Riley graduated in the Spring of '10 from Pomona College with a BA, majoring in Environmental Analysis, with a Philosophy minor. He intends to go to graduate school in Architecture sometime in the next 2-3 years, at a school TBD. For the short term, he is coaching Ultimate Frisbee part-time for a local high school on a daily basis, and on Monday starts full-time carpentry school. It's a four quarter program. Along with all the other things he made for his portfolio in college classes and his eight week University of Washington architecture program two summers ago, this should be a useful skill and an asset when he applies for graduate school. He has already taken the GRE (Graduate Record Exam) and did well, so that requirement is complete. It appears he will be well occupied, 9-5, M-F.
Casey is working part-time after withdrawing from the University of Colorado last winter. He is a busboy at the Dahlia Lounge in downtown Seattle for several shifts per week (dinners and lunch), and doing a great job there (not just parent boasting, according to his manager during his first performance review). He is also coaching Ultimate Frisbee part-time, for a local middle school. He applied for a transfer to the University of Washington on Sept. 1 (their deadline) as a full-time student for Winter quarter (starting in January), and expects to hear something by the end of October. There was a slight chance he could get in for Fall quarter, but that did not pan out, so he will likely add more shifts at the restaurant until he resumes his studies.
We are obviously very happy to have them here with us.
Thursday, September 22, 2011
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Wednesday, September 21, 2011
Meagan's disease is at this point incurable. And therefore likely terminal, in some undefined timeframe. For the moment it is controlled. That means we don't expect her imminent demise, in fact at this point it looks probable she will be here for the holidays, something that means a lot to her. But controlled in the context of melanoma means you really only focus on the short term - it speaks nothing to any long term prognosis. Because she has a quite active disease, and melanoma is known for being capricious, unpredictable in its behavior and can "jail break" (surge and grow rapidly), one just has to be cautious in looking too far ahead and assuming anything.
Thanks to radiation treatments, the current tumors seem to be responding (shrinking), and the ones in her brain for sure are shrinking as a result of the last treatment. We don't know yet if her spinal tumors are responding; there is a temptation to extrapolate and assume that if the brain tumors responded, then it's likely that the spinal tumors will as well. But we won't know that for sure until her spine is rescanned (in the next 45 days or so). It's not safe to assume that any particular treatment is working until you have hard data (a scan) confirming an impact and it's not safe to assume that the trajectory will remain the same over time.
Melanoma has somewhat of a reputation for radiation resistance. It can be effective initially, but then can mutate or survive and continue to grow after initially shrinking. Even if the tumor has shrunk, some melanoma cells can survive. It can also return to a treated area. In the case of the brain, her tumors are being "spot welded" as Dr. Vermeulen likes to say. This means that the focal point of the radiation beam is the tumor itself and as a result of the technology the radiation burden/dose on the rest of the gray matter is not large. Obviously the more tumors which emerge (and even beyond the newly discovered ones we fully expect others to occur down the road) the more difficult it becomes. You can still spot weld them with the Cyber knife or Gamma knife, but the burden/dose on the rest of the gray matter starts to increase. So you start killing off more gray matter, and that causes long term impacts. One thing that can happen is that instead of 1-2 brain tumors emerging, there can be a lot which pop up. The Gamma knife can handle up to about 6. Beyond that they would recommend whole brain radiation. Once you go to whole brain radiation, you get one shot at that. There is only so much radiation the brain can take, and once you've had the whole brain treatment, and you get another tumor, it's game over. So that is why it is crucial to find some systemic way to stop the melanoma from spreading - and given there is nothing like that currently out there, why melanoma is considered one of the most deadly cancers.
With regard to her spinal tumors, she has been treated in two areas of her spine. We hope the treatment is working in those areas. Because she has an active disease it is highly probable that the disease will spread into other parts of her spinal column through the epidural space. If it sticks and grows in those areas, which we will discover through a scan or through symptoms she experiences, they will be able to treat those areas with the Tomo therapy radiation. But like the whole brain radiation, you get one shot at each area. The spine can only tolerate so much radiation. So if the cancer reemerges in a previously treated area, they cannot treat it anymore.
So that's why radiation is considered local control and palliative treatment - it is short term and not a cure. It buys you some time.
She does have numerous small tumors on her lungs. For now, those are causing no problems, and are not being treated, although they could be zapped. Aside from a couple skin tumors, the melanoma has not shown up in other vital organs.
Absent a new drug discovery - and at this point I have not been able to find anything in the pipeline which would suit Meagan - the only hope for a systemic cure to stop the melanoma in its tracks is a form of chemotherapy. The Temodar did not work for her. It has worked for a very small percentage of people, and those people have remained free of disease for a period of time - they aren't considered cured, but their status is referred to as NED (No Evidence of Disease). Dr. Kaplan has indicated he wants to try to new chemotherapy called Abraxane. Whether it is used alone (single agent) or in combination with some other drug (such as Avastin), it still has a pretty low chance of success. Even if it has some initial success - melanoma shows an ability to adapt and get past it. For some, and there are anecdotal stories out there, it has worked to stop the growth. It hasn't proved its efficacy in large, controlled studies, but at this point it hardly matters; if there is a chance and there is nothing else, why not try it, especially if the side effects are manageable.
The only drug out there which has a reliable track record of producing durable responses in a limited number of patients is Interleukin-2. Generally 6% of patients will have a complete response and another 12% will have a partial response. This is a particularly nasty drug with major side effects. Even if you wanted to try it, you have to be off steroids (which Meagan is not due to her brain tumors and regular brain radiation treatment which causes swelling). Because of her seizure risk, it becomes less viable as an alternative. So unfortunately, IL-2 alone or in combination with some of the new agents being developed in clinical trials is off the table for her. At least until she has no brain tumors emerge for a significant period of time and is able to go off steroids and anti-seizure meds.
That's the picture as I see it. Very slim chance of Abraxane controlling the disease. Continued radiation of emerging tumors to control them as long as we can. Then at some point, the disease moves from controlled to uncontrolled, and runs its course. So we buy time and enjoy every minute of that time we can.
Tuesday, September 20, 2011
The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.
Monday, September 19, 2011
It's somewhat of a relief ironically, rather than bad news. It could have been there were so many new tumors that there would be really no effective treatment. Or that the previously treated tumors didn't respond. So what her tumors are acting like...is acne - a zit emerges and you pop it. A tumor emerges and you zap it. It could be our life for quite a while, especially since no cure is on the horizon. So our favorite friends are now our radiation oncologists - Vermeulen for the brain and Landis for the spine and body.
Sunday, September 18, 2011
Dear Friends and Family,
And another season continues to pass. It is so strange to me how some of us can live through such drama and trauma and yet loveliness too...sometimes the passing of our lives here just feels so indifferent to the consequences yet we continue to try t0 make sense of it all. Continuing to feel grateful for those we love and share our lives can be the most special and remarkable accomplishment. Success by small measures can count for so much.
I'm still here ~smile~ Actually, have more hair than a month ago, have been scared to my wits end about a month ago, was given from 2 - 6 months to likely keep hanging around BUT Kaplan and my radiologist then uncovered a new radiation treatment (Tomo therapy...only available here in the west for about 6 months.... 20 minutes, 5 days a week, for 3 weeks.) The tough part 0f all of this is that more cancer emerges/presents and we now find that the most effective way to deal with it is to spot treat each break out thus if it presents on my lung, we zap that, if if presents in the brain or spine, we spot zap that too. Really technology is quite remarkable. So far, for me, as well, very mild side effects. What has upset me to the greatest degree is feeling "fuzzy" and not being able to think straight. As many of you know, I could go a life time with throwing a ball or doing any exercise but to be challenged by not reading or writing is nearly heartbreaking. Keeping my thoughts straight as I continue to recover from the radiation is also quite a crazy and frustrating effort but I'm hoping over time some of that "fog" will clear. So, we last met with Kaplan two weeks ago and came through okay until next time. We finished our last Tomo radiation for the spinal tumors which should take us to our check up in a month and finally we hold our collective breaths for Monday afternoon when we will read the results of the brain scan I had on Friday and move forward from there. Scans are always tough days but when they are done and over with and you realize you can relax for many days on end and just enjoy and be grateful....those are such good moments to savor.
So, though we do likely know where this is ultimately going, we seem to have some more time and an avenue or two still to try a next...A far cry that where I felt we were a month ago. What an amazing capacity for medicine to address so many huge issues!!! And thank goodness, for my hero, Mr. Hank Kaplan.
Thank you all so much for your continued supp0rt. I do love hearing from you and appreciate your patience as I continue to "dip in and out" as communiques are concerned since working with words is now harder for me and takes me much longer. Email is still the mode of preference as I can take my time and though you may wait awhile for a response, you will get a collective or individual one eventually....I still have my stack to answer from a month ago...so hang in there. ~smile~ Still unfortunately text, and phone are hardest to catch us. Nick is also doing an amazing job keeping up on his blog
Much, much love to you all.
Saturday, September 17, 2011
Given all she has been through and how active the disease is, my attitude, and hers to a certain extent, has changed quite significantly. I fully expect something will be found at each scan, and it would be a surprise (and a nice one at that) if her scans were clean. I also know what to expect treatment-wise, what can be handled now and what can't - as a result of prior experience and research. So, if in her current brain scan they find a few isolated tumors, I know those can be zapped. Yes, it will cause some hair loss and maybe some short term memory issues, but those seem to resolve over time. If they find a lot of tumors, that likely means whole brain radiation (low and slow), which has more implications. But it is still a treatment which can provide some control and buy some time.
So my stress and anxiety level this time around is low. Maybe I am just inured to it all. It's not that I am inured to how Meagan feels and my support for her. It's just that I don't view the results meeting as such a pivotal event with major consequences. It is more like one event in a series of events, all of which are part of this spiral downward. It also reflects my confidence in the technology available to control this for a while.
But we did talk last night about at what point do you say, "enough". We aren't there yet. So Monday will produce whatever it produces and we will act on it. Been there, done that.
Friday, September 16, 2011
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
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.
Result: one skinned knee, one skinned and very swollen knee, one hand skinned and swollen, and a slight cut above her eye. Nothing broken, including glasses or watch. So we went home and got her patched up and iced and laced with more ibuprofen. Her knee is pretty stiff.
This woman did not need this. She has been unsteady of late and I try to watch her and prevent this, and I have prevented a few spills and bumps before. But gravity is faster than I am sometimes...
The good news is - it did not prevent her from a planned dinner out to celebrate our son's twentieth birthday!
Tuesday, September 13, 2011
Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.
I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.
We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.
So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.
Saturday, September 10, 2011
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.
Wednesday, September 7, 2011
In my situation, dealing with a long, drawn-out process and a downward spiral of insults which rob me of my beloved, grief has a different texture. It's more like Chinese water torture. You get some every day, some days more, some days less. But it's always there. Some days the knees buckle, others aren't as bad.
I'm not trying to compare these types of grief to say one is better or worse; they both are terrible, but different. My heart goes out to the families of the 9-11 tragedy. Their grief is likely rising again as the 10th anniversary approaches. It's a hard thing to cope with and there is no one way to deal with it. But I think acknowledging their grief and providing words offering love and care help.
1. Treatment decisions, especially if the person affected is incapable of making the decision on their own. It means you have to do the research, have the questions ready for the doctors, and then help the person affected understand as much as they can and make as much of the decision as they can. In many situations involving life ending diseases or natural end of life conditions - there are a number of options with different consequences. Balancing quality of life with treatment impacts is challenging. Especially because humans are remarkably resilient and can surprise with their ability to bounce back from dips. And the technology is evolving rapidly - end of life and cutting edge life extension treatments can be enormously expensive (thank goodness for insurance) - but not always available where you are - so travel to treatment facilities becomes a huge issue. Is it worth traveling to get treatment which might be quite debilitating but has a chance of meaningful life extension, but also has a larger chance of not working and you end up in your final days away from loved ones in a lousy condition?
2. Duration of condition - whether it's long-term (a marathon) or short-term (a sprint). The physical and mental toll of caring for someone over the long haul is huge. It becomes all consuming. It's hard to pace yourself, because you are responding to the crises de jour - which is largely outside your control. Adopting a long term mindset helps, as does building your own support network and not being afraid to reach out and ask others to help. But there are some tasks and support which cannot be outsourced and it is simply necessary to have the emotional capacity and endurance to weather it long term.
3. Logistics - appointments and treatments - scheduling, travel to and fro, emotional support before and after, medication administration. Certainly technology helps - having all this on my iPhone with alerts is invaluable. You can make the best of plans though, including ones for yourself, and then have things change rapidly, which sets off a cascade of changes to the appointment diary and logistics arrangements. You just have to be flexible and expect the unexpected. You also have to be prepared to wait a lot.
4. Lack of independence. Even though the person affected is now dependent on you, it works the other way. You are tied to that person and lack independence yourself. Between work and caregiving, that may be all the life you have. It can sorely test your relationship and you can start to feel resentful. That's when its good to reflect that the person did not do this intentionally, that you are in the best position to provide the support you are giving, and that your sacrifice (which indeed it is) is the best gift you can offer your loved one.
5. Communication to others. It is quite challenging to navigate the relationship network about who the person affected wants to see versus who wants to see them. Deciding who communicates about the state of the disease and progression - and how much, while respecting the inherent dignity and needs of the person to make their own choices as they are able. Further - what if there are differences in how it is presented or understood between you and your loved one? You are not just balancing communication of facts, you are balancing emotional support and motivation.
6. Playing social secretary. It's not just about scheduling and helping the person while they figure out who to see and when. It's about making sure all the elements are considered - like need for downtime and rest. And capabilities versus desires. It's also about communicating with people who have their own agenda, and buffering the affected person. It's a thankless task and one you can get falsely blamed for gatekeeping or screening. But you have to suck it up so as not to burden the loved one.
7. Arranging in advance additional supportive care when the need comes to that point - either in home care, in home hospice or in a supportive care facility. Figuring out end of life considerations that the person might want if they haven't expressed that need previously - such as burial or cremation preferences and arrangements. How do you do the research without the other person thinking it's a foregone conclusion? (One answer - do the research on line before they wake up...and make the calls when they are in treatment or napping).
8. Making sure all administrative details are taken care of - will, medical care directives, power of attorney, discussion about Death with Dignity (legal in the State of Washington). Bringing up the issue is stressful, as are the conversations. You have to be ready to have the conversation at an appropriate moment and then memorialize it.
9. Taking care of yourself. Find an outlet for emotional expression. Therapy or close friends helps. Expect a lack of sleep due to worry and schedules being thrown off. It's important to find the time to exercise (even twenty minutes of in-home yoga, stretching and calisthenics works - even if you were a former gym rat or exercise junkie. You have to get over the notion that it's all or nothing - either I go to the yoga class or I don't. You do what you can when you can - get up and move) and eat well (get off sugar and white carbs). Avoid the temptation to get by long term on coffee and pastries or energy bars. Get a team to support you.
10. Trying to maintain life and the household as it was before. Let the little things slide. There is a temptation to try to keep other things as normal as possible while your life is upside down. Let the mess happen, it's unimportant in the scheme of things.
I realize there are lots more - but these strike me as large burdens. I have already written before about the huge emotional issues associated with the loss one has with the affected person - whether as spouse, parent, or other loved one. That is a burden unto itself - as you move from a co-equal, mutually reciprocal relationship to a caregiver relationship. And recognizing that the basis for the relationship changes because the person changes. This is perhaps the hardest burden of all.
Tuesday, September 6, 2011
We had a very nice weekend at our place at Decatur. It does have stairs, which caused me more than a little concern at times (they do have handrails from the main floor to the upper story - but there are a couple steps coming down from the kitchen to the family room and those are particularly scary for me when she has a cup of coffee in one hand and a glass of water in the other), but I resisted the urge to help her. The act of helping implies disability, which adds to the other insults she's feeling, continuing the loss of identity and capability. But she did fine at our place, mostly because she is familiar with it. A lot of the worry is around her loss of visual capability, since she has lost her right peripheral vision, and her mind fills in the gap, she isn't always clear about the terrain, nor can she see actual hazards. It also means she doesn't always walk a straight line...a little worrisome when she was walking down the narrow dock. She does fine on even ground.
When we were getting aboard the boat to come home, there are stairs and rises at the hatchways. I was holding her arm (but on the right side and since she couldn't see me wondered if there was some strange man accosting her...) and guiding her toward the hatchway to the main deck sitting room. I said, out loud, "honey, watch your step". After she stepped through, I got the look back and the evil eye. I didn't want her to trip and I wasn't clear at all that her vision would have picked this up - but she clearly had seen it. So saying that out loud announced to the world her deficit potential - and that is not at all a comfortable thing for her. She is sensitive about this, as would we all. So I gulped and made a mental note - ok, she is fine on this boat in the future.
On the drive back to Seattle, we stopped for a quick bite to go as is our custom. She wanted a milkshake (but also couldn't pass up the chipotle turkey burger) and we stopped at the Fidalgo Inn drive in. From the car there was a car curb stop, and a short half stair before one gets to the entrance door. I figured after the boat incident I wouldn't say anything (I am not a glutton for punishment). At entrance ways, I try to get there first (to open the door if necessary) so I can be right behind her and guide her from behind if need be. I did, but as she started walking through the door at a reasonable speed, her attention was straight ahead looking at the menu on the wall. She was about to walk right into the right door jamb had I not caught her shoulder and slowed and maneuvered her to the left. She would have hit that doorway hard on her shoulder. So in that case it was good to intervene, and it was subtle, and she barely noticed the assistance, nor did I get the "good eye" - the "thanks for keeping me from being injured" look.
So it is a process of continually monitoring, being as subtle as I can in helping her, and not drawing attention to her challenges in public.
Saturday, September 3, 2011
So I am stuck with either correcting, clarifying or staying silent. Sometimes I am not quick enough on the draw and I won't quite get what she is talking about - I know what she said is not exactly right, but don't know what she is actually meaning. If I guess wrong, and then through an interactive process we figure out what she meant and it is closer to what she said than what I thought she meant - I lose. I then get the evil eye. If I'm right, then I'm correcting her, which doesn't feel good to her (has never felt good to her), so I lose. The only time I get a draw is if my clarifying statements validate her intent, if not her specific words, so that she feels validated by what she said and therefore feels somewhat competent and still mentally healthy. The worst is if I have to say "I don't undertand what you just said", or "that it doesn't make sense to me - can you try that again". I really try to avoid that - because then it really makes her question her capacities and wonder if it's more than just the meds or radiation impact - like maybe potentially more brain tumor growth.
So it's pretty much a lose, lose or draw game for me. This doesn't happen just a couple times during a day - it happens dozens of times. So sometimes I just agree and validate what she says (I can't have zero response - that is not an option - she is looking at me for some signal), because even if she is wrong on the details, it doesn't matter really. And it's easier on me and our relationship to be in agreement than always clarifying or correcting.
Thankfully we have a couple of days here at Decatur Island and there should be less interaction with others and need for discussing logistics, dates, numbers and time. That will be a good stress reduction for both of us.
Thursday, September 1, 2011
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.