Old Neighborhood, New Walks

We've lived in this neighborhood since 1993. We haven't always walked regularly, but pretty often and more so of late. Sometimes on the weekends with friends. Before her stroke we walked at least once once a week together (Meagan has her separate, usual Friday morning walks with friends). We do about an hour, usually a loop. We have our favorite loops from our house.

So here is the beauty of brain damage. We went for a walk today. Meagan said, "let's go walk that area behind Husky Stadium near the golf range, we've never walked there before". She meant from our house to the UW Horticultural Center and then the walk through the Union Bay Natural Resources Area, out to the edge of Lake Washington, We've NEVER walked this before. In fact we have NEVER walked it at least a dozen times. If you take out the word NEVER before the last two sentences, the statements are true.

She was a good sport about it. She definitely saw it with new eyes and everything was interesting and new. I like the walk a lot; and we saw eagles and plenty of wildflowers. So it is kind of the best of all worlds - she gets a new walk and we don't have to leave the neighborhood!

Reinforcements...

A spot of good news, our son Riley has returned from two weeks abroad visiting his girlfriend in Berlin.   He had a wonderful time, but we missed him and I'm glad he's back for several reasons.

First, he's a great young man and I enjoy talking with him, especially about architecture, philosophy and cities. Second, he's a great support to me and does a great job checking in and seeing how I am doing. And thirdly, he's a second person in the house who can be with Meagan on a spur of the moment basis if I want to run an errand or go out for a short ride. Having that flexibility and a little more freedom will be a big help.

Scanxiety

It's starting. We are at T-3 days for the brain MRI and T-5 days for the results discussion with Kaplan and what to do next (some of which is dependent on if there is brain tumor activity and some of which is independent). It's pretty difficult to explain to Meagan the "what-ifs" because she has a hard time following it and because it gets scary and goes down the dark road she'd rather not visit. So it's a delicate balance to respond to her questions with enough information to be useful but not tip her over the emotional edge.

For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:

1. If there are 1-3 isolated and contained tumors  - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location  - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.

So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.

Pillow Talk - it ain't what it used to be...

We've kind of developed a pattern. Usually I get up pretty early in the morning - between 4:30 and 5:00a.m. I have coffee, take care of the dogs, read the news and then do a lot of thinking and some writing. Meagan is up anywhere between 6:00 and 7:30a.m. After she gets settled we usually talk - mostly about her disease and a lot about how its going, what is upcoming, the boys, then about her appointments she's scheduled (that's when I typically find out about where I need to take her - sometimes with more advance warning than others), and what she needs to do that day in terms of timing to get ready and who is coming and what boy's schedule is and what I am doing. Usually not many tears, unless we get into some rough territory. But the medications she had the night before have worn off and she is typically in pretty good form, feeling reasonably sharp and capable of handling the situation. When she finishes breakfast and takes her medications - around 9:00a.m., she starts noticing the mental sharpness change right away. The mood changes don't kick in until later.

She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.

Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.

That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.

"Do you still love me?", and other (more difficult) questions...

Meagan has always had a propensity to ask piercing and incisive questions. She reads me like a book, and she reads books well. So my answers need to be damn good, or else I'm in big trouble.

In the past, since the discovery of the brain tumors and the stroke, she has asked tough questions such as, "am I going to make it?". There were periods of time where my answer had to be positive (even though I wasn't sure) because that was what she needed to hear - she needed the hope to keep going because she wasn't mentally ready for the more accurate answer ("probably not"). So it was a sort of kindness on my part to bend the truth, because the goal was to keep her positive and motivated. It wasn't to have a completely open and candid relationship as a couple - because the roles had changed and my job as cabana boy and spouse was to care for her. We also had at that time, some clinical trial options that had some very low percentage of success (success defined as complete remission rather than life extension of some duration). So I could point to those as reasons for my response.

After her seizures and the closing off of the clinical trial options, and the concern by Kaplan over the neurological issues associated with any attempt to use aggressive immune system treatments  - information she was made aware of  - it became more appropriate to lead her into the deeper water and give her the more accurate answer. At that point it was information she was better able to deal with, even though it comes with a measure of grief.

As time has rolled on, and she has experienced the side effects of treatment (the radiation of the brain, anti-seizure medications, chemotherapy), there have been some other questions. Not too long ago it was, "am I losing my mind?". Well, there is no question she is suffering from cognitive deficits. Some are long term and not going to return, like the numbers and dates and time capacity. Others, like her short term memory are more problematic. They have waxed and waned, lately more waxed. It could be the Temodar (chemo) kicking in, it could be delayed onset of the radiation as the healthy brain tissue in the margin area they got dies off, or it could be the medications in general. My response though was swift and sure as it needed to be and as is justified by the facts - "no, you are not losing your mind". I remind her of the brain's ability to rewire itself, remind her of the likely short term nature of the effects, and then remind her of all the aspects of her brain which are unaffected, such as her personality, her ability to have conversation, her capacity for empathy and love, and all the qualities of the mind she has which have endeared her to so many. Her inability to write beautifully is a pain in the ass and frustrates her, but I keep reassuring her it will return in time with practice as her brain re-learns. Of course she is still sharp enough to retort that she hopes it happens before she kicks the bucket (evidence of her capacity to think and warped sense of humor).

Yesterday she hit me between the eyes with two questions, one easy and one hard. The easy one was, "do you still love me". Of course I do, and I told her about the depth and breadth of my love for her and how that was a foundation unshaken by the events. The next question was a doozy. "Do you love me more than just as a wife?". I think what she was getting at here were reassurances she needed over things like appearance and attractiveness and the quality of the relationship that make a scintillating partnership.

She is obviously distraught over a lot of the physical changes. Notwithstanding "Audrey", her smashing new wig, underneath she has lost a lot of hair from the radiation. She's patchy and bald in places, along with the rest of her hair which is a buzz cut. Whether that is permanent or not is unknown.  But women (and men) care about hair loss, and it is a self-perceived measure of her physical attractiveness. She has also put on some weight - some of it steroid driven, some of it because of her need after the stroke to eat high salt and fat foods - to prepare for what we thought would be a next difficult treatment. Her weight for 25 years has been around 103 pounds; she came out of the hospital weighing 93 pounds, and now at 111 pounds she is in treatment fighting condition and hardly overweight. But she notices the differences, has had to buy some new clothes which fit, and is not at all happy about the padding on her face. She has also had a lot of surgeries and has the scars to prove it; appearance altering badges of honor but she does see them. Lastly, as what one of our friend's terms her capacity for "aerobic worrying", she wants to still measure up as a good partner, one who can be interested and interesting, one who gives as much as she gets. And is still viewed as a hot mama by her beloved.

I'm no saint. Our relationship has changed. I am the caregiver and that definitely changes the relationship. It creates an imbalance in the relationship that isn't easily overcome, especially with cognitive deficits. In normal situations that is a temporary condition  - but when you are dealing with a stroke victim, it can be forever. Especially in her case, with the medications she needs and the likelihood that forever isn't that long. And then in responding to the question, it goes back to earlier days, what is the answer she needs to hear and what would be a kindness and reassure her, especially given where she is in terms of emotional swings and fears of impending death and worries about her boys and just making it through each day and week ahead?

In so many ways my love has deepened and I told her that - her ability to cope with this disease with grace and style, her continuing ability to reach out and care for others and express her love, and her desire and ability to create meaning and joy in her life notwithstanding the prognosis. She has exhibited remarkable qualities and those are ones that make me love her more than just as a wife. But I kinda, sorta side-stepped the underlying real question and thankfully she didn't pursue it. I do think I will be spending more time talking about and reminding her of the good times we have had as a couple when we weren't in parenting mode or crisis or caretaker mode. Reminding her about why I have loved her as more than "just a wife". And continue to do so, although internally it's for different reasons.

Just another example of how cancer affects more than just the person with the disease...

Wheel Spinning

Yesterday afternoon was pretty frustrating for Meagan. She attempted to get into her studio and finish up arranging it, as well as tackling a few small projects. Unfortunately, her short term memory was shot yesterday, and what should have taken only an hour or so, ended up taking up the full afternoon. She simply could not remember even what she wanted to do within a five minute span. The good news is she got it done. But not without tears, frustration, and a lot of swearing.

It's hard to know what is driving this - it could be the effects of the craniotomy, the radiation, or the medications. It does seem to vary somewhat from day to day, which would lead me to think it's more the medications and how it ties to how tired she is or some other aspect of her body. But it could very well that the short term effects are becoming more long term than short term. There is no question some aspects of her cognitive capability are gone "forever"- such as her facility with numbers and dates. But the short term memory thing seems to be more "assertive" and whether it will resolve in time remains to be seen. She goes off one of the anti-seizure medications this week and we will see if that makes a difference.

It definitely causes her distress, given how sharp she used to be. She asked me several times yesterday if she was losing her mind. I've tried to reassure her that it is likely short-term and temporary, and to just relax about it. There is always the worry that it is not an aspect of her prior brain injuries, but indicative of developing brain tumor activity. I'd rather not go there speculatively, we will know that by the 3rd of August.

She is using all the tactics one should to keep her on track - such as lists and calendar management and a white board for planning. My reassurances though ring a little hollow to her, and I suppose it is just a condition she has to get confortable with as best she can. It doesn't affect her ability to interact with people and whenever she can't recall something in conversation she is able to make light of it. But in private when she is on point and trying to get something done, it's a problem she recognizes, without a known resolution. And there is nothing much that can be done about it other than acceptance.

Sun and Laughter - a good tonic

Thank you sun gods! Between that and a couple outings with friends which generated lots of laughter, today is a better day. It's kind of amazing how Meagan gets so nourished by meeting with people, and even though she can get teary about describing for them what her prognosis is and talking quite candidly about it, there is still a lot of focus on the hope for the good life remaining. And finding the joy and happiness of each day. It makes it a lot easier when you can be outside and surrounded by our beautiful garden and the antics of the dogs, squirrels, and birds. Or with good friends.

Since we are in a relatively good spot right now (with no new active impairment due to the disease), it does afford us the opportunity to stretch a bit. We set up our alarm system so she has a portable panic button that works anywhere in the house, so if I am not here for a short period of time, she can hit it and it will generate a call from the central station and if there is no response they dispatch the paramedics. So I may be able to sneak out for a quick ride or walk or run errands even if the boys are home, but asleep. It helps her confidence a bit also.

But I do kinda feel like we are waiting for the other shoe to drop. It may occur at the brain MRI results meeting on the 3rd. Or it may just show up when some part of her starts to feel differently.

In the meantime there are now more good days than bad. She is even able to laugh at her condition after the stroke. Often times she will want to talk about something to someone, but will be having a hard time remembering what it is she wants to say. So she will look to me and ask me what she wants to say. Now, I've gotten pretty good after 23 years at finishing her sentences, as many married couples can. But I am not a mind reader and it's pretty hard to be prescient and discern what it is that she wants to tell someone, without some sort of hint, to start her sentences. So we get a good chuckle out of that.

Doldrums

The lack of sun does not help my mood. Even for a dyed in the wool Northwesterner this wearher is getting to me. I need some sun and warmth and natural vitamin D. Kind of ironic when your wife has melanoma, I realize.

But this weather coincides with an in-between time from a disease progression perspective. I'm not on red alert dealing with a hospital situation. I'm not even on yellow alert, having to worry about her every move. She's feeling pretty good physically and hanging in there emotionally, good days and bad. But the chemo (Temodar) she is on isn't generating side effects of note (and we can't tell if it's working) and she seems to have adapted to the other medications even though they do have side effects.

I've done about all the research I can do and talked to all the people I should and have all the questions written down for Kaplan and have laid out the "if-then" scenarios. There is really nothing I can do until the 1st and 3rd of August (brain MRI scan and results day and what to do next day). It's definitely the calm before the storm.

But for someone who has thrown everything I can at the situation and has given up any other purpose driven activity, it's a little disconcerting. I think work of some kind, paid or unpaid, is a part of who we are as humans. I've certainly been acculturated that way besides.

Now if it was nice and sunny out I could pretend it's summer vacation and just relax and read summer froth and enjoy. But it's not, or hasn't been. I can't go anywhere - I need to be with Meagan and even though she has visitors and I can arrange sitting time and she is arranging things that give me some hours here and there, it's not possible or desirable to have anyone else here for big chunks of time. She needs her own private time, reading and bath time, or starting to work in her studio to finish up some projects. So as close as someone else might be it just doesn't work to pull someone else in to our home (so DON'T take this as an invitation to offer, thank you kindly). It's just an observation about reality and the reality is I need to be with her.

So the net of it is that as the primary caregiver there are lots of times when your hair is on fire and you don't have time for anything else but cabana boy duties. Then there are times like now when not much is happening other than the occasional emotional storm. And it gives you time to think, about the future, what you could be doing if you were unfettered, and what is important. I did "drop out" of the philanthropic and nonprofit world, work I really enjoyed. I miss it, especially now.

If that damned sun would come out I probably wouldn't be feeling quite so blah. Well, we are going to see the last Harry Potter movie in an hour; that should help!

A part of the job...

There is one part of being a cabana boy for a stroke victim who has cancer that really bites. Regrettably, her memory is not what it used to be. So she forgets about the conversations we have had before - important conversations - with Kaplan, about her prognosis, and the (dwindled) options and consequences. So she will have a question, which inevitably leads to clarification, more questions (because she is having a harder time following things too), and getting into the deep end rather quickly. I then end up feeling like the bad guy because I am informing her of difficult things (which she has heard and processed before), which makes her emotional, and then of course that makes me emotional. So she gets traumatized, I get re-traumatized, and the whole thing is a mess. It happened again this morning. This is not the first time, nor will be the last. This is one part of the job I'd rather delegate to Kaplan and team entirely - but he is not available 24x7 or whenever the mood strikes her to dig into it. So I'm "it", and it bites.

A Change of Scenery

We had a nice weekend at our place at Decatur Island. Good food (including crab!) and friends and a beautiful full moon on Saturday night/Sunday morning. I'm not sure what time it was in the middle of the night when Meagan woke me up to have me look at it. But it sure looked big!

Kind of a bittersweet weekend though. For one, it was quite a contrast with our Seattle home life - with its chaotic nature; two boys moving back in, construction stalled on one remodel of a boy's bedroom and studio, and Meagan's studio not put to rights yet from her move. Plus all the calls, visits, and appointments. At Decatur it's reassuringly the same. It's exactly the way we want and like it and it's not changing. The scenery - with the view of the Sound, islands and Olympics in the background is solid and enduring (as long as I keep the trees under control), and quite beautiful. It is QUIET - especially at night (except when someone on the far side of the island or over at Lopez has a bit too much to drink and fires off their shotgun  - sound really carries). So lots of time for reading and reflection. It represents the core of what we love, and when we leave it and return to the maelstrom, that is a bit hard.

It's also bittersweet because Meagan is aware of what she will miss, eventually. And we have some memorabilia and art which is very dear to us, and it saddens her that it will not be a part of her. I suppose that is the case for all of us someday - but the immediacy of her condition creates a poignancy which makes viewing those things good and sad.

Lastly, she tried to use the time to write in her journal and finish up a special book of quotes for Casey as she did for Riley. She used to have beautiful penmanship and it is enormously frustrating for her that she cannot do it that way now. She makes mistakes and can't keep on the lines, and it doesn't look as pretty as she wants, and if you know Meagan, you know she likes pretty. I tried to reassure her that it will be recognized for what it is - a labor of love and determination in the face of insults which prevent her from her old means of expression - but something which will be cherished more than if it was written in the finest hand ever, because in this case intent and motivation trump the visuals.

The Good, The Bad, and the Ugly

The good is that Meagan is feeling relatively good these days. So good that she has a hard time believing that she really has this horrible disease. Unlike many other cancers, she has not had to endure lengthy, debilitating treatments. Her "events" have been off the meter bad, but did not leave her feeling badly for any significant period of time. Her surgeries have been relatively minor, with localized pain, but requiring no more than ibuprofen. So after 15 months with living with the disease, a disease that can be very debilitating and require super hard treatments, she has not had that bad a quality of life. We hope that continues for some period of time. But I can sense the frustration and disconnect within her. She feels capable of walking, of being productive, even though she has some limitations cognitively and physically (no driving). So it's a bit like being in the eye of a hurricane - some events have passed by with severe consequences, there is this temporary respite (even the chemo she is on seems to have little side effects, not even much fatigue), but I at least know we have the rest of the hurricane to come.

The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.

The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.

Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?

Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her  - coupled with a discussion of quality of life and probability of success. Ugly...

Caregiver Guidelines

I read this article and even though it applies to the workplace, it also applies to "my workplace".

When it's a long march - you gotta take care of yourself...

http://blogs.hbr.org/schwartz/2011/07/is-the-life-youre-living-worth.html?cm_sp=most_widget-_-blog_posts-_-Is+the+Life+You%27re+Living+Worth+the+Price+You%27re+Paying+to+Live+It%3F

New Topics - Into Surreal Territory

One thing I would recommend to all healthy couples is that they have a discussion and write down what their wishes are for end of life issues and directions/wishes for after end of life with regard to burial, memorials, disposition of treasured articles etc. I'm not just talking about advance medical directives, durable powers of attorney in the event of incapacitation or wills. Those things are crucial and we had them done years ago and updated them regularly. So when Meagan was hospitalized not only did I have copies in our possession (and our attorney had the originals if needed) but I actually had him send me electronic files which I have on my iPhone. That proved pretty helpful when the nurses and docs asked me questions about things like "resuscitate or do not resuscitate". I was also much clearer on the things she had stipulated in advance and over which I had no decision making authority (do not feed, no artificial breathing support if comatose) versus those things I did once she was certified as being incapacitated. Fortunately I did not have to deal with any of those things and my hope is that I don't - that she will be competent and able to express her wishes to the very end, whenever that occurs.

But that does bring us to the things we have talked about that are out there, but feel so weird to talk about. What makes it weird is that for us, it could be much more imminent. So I would have liked to address these things while we were both healthy. Because addressing them now, as necessary as it is, makes it much more emotional, and for Meagan, that means an abundance of tears.

Some topics seem more ok than others, like how the end of days should look. That means for her: dignity, no pain, pretty, perfume, painted nails, friends and family, being out in our family room, not in an ICU or an isolated bedroom, flowers and watching her musicals. Others are a little more challenging - like burial or cremation, where, memorial, and disposition of treasured things. How to use her time, and prioritize it so everything gets done that she wants done, without it feeling rushed or signifying an imminent end become more emotional. Worrying about me and the boys, and how we will get by and move on and what that looks like generates lots of tears. But at least through all this - she does get to express her wishes and I know how she wants it done, and what influences she wants to have to the extent she is able from the great beyond.

But we have enough tough things to address on a daily basis - to add this all in - necessary as it is - definitely adds stress and emotion. We have gotten through most of it, so I can put it behind us now. But boy I wish we had done all this before.

New Territory

We are definitely on new ground, and it's pretty shaky.

There is definite frustration on Meagan's part - about not wanting to be a problem. It's quite heart wrenching at times - she knows she doesn't have her full, usual faculties, and maybe won't ever again, but knows enough to remember what it was like. She does not like being loopy or forgetful. But because she forgets, she does have to ask a lot of questions and/or repetitive questions, or the same questions on successive days - it can make the responder a bit impatient. If the questions are particularly sensitive for one of the boys - it can be even more challenging as they probably didn't want to answer it the first time let alone the second. I think we've all upped our patience level, me by an exponential factor - but we aren't perfect and sometimes it shows. Meagan still retains her highly attuned sense of people's emotional state, so she senses when we are frustrated or impatient with her (and sometimes doesn't know why, so when we have to explain it's like being asked the same thing a third time...) and that upsets her because she doesn't want to be a problem.

I've actually encouraged her to not ask the boys so many questions - as is her usual style to draw them out (or anyone else for that matter) and talk more about herself. This is hard for her too - it's not something she is accustomed to doing. But it seems to me it will produce less tension than a repetitive inquisition approach with the boys. As for me - I just need to keep doing hot yoga and exercise and relax. Yesterday, after I drove her to her therapist's appointment we had a few errands to run and I thought we we had a list and I thought we were going to swoop in and swoop out. Well, we got to one place where we had two items to get, but she lost the list and couldn't find it. I knew the first thing and got it, but didn't ever see the list so didn't know what was on it. She couldn't remember. So her strategy was to wander each aisle until she discovered what she needed. What I should have done was gotten out my iPhone and read the news and played Scrabble until she figured it out. Instead I tried to be helpful (not!) by wandering with her after a bit trying to prod her about what it might be. My agenda was getting out of there  - hers was about discovery. Different expectations equals frustration on both sides.

So we agreed later (after a teary and emotional conversation - which most are after things like this - the meds still affect her a lot) - set expectation, make sure we have the list if we are going together, and because she can't drive and I need to do the errands and she is with me, we can't always do it my way. Browsing and shopping without an agenda is in her blood and I have to respect that and give her the opportunity to do that - or let her explore that need with someone else!

Chemo - Day two

The good news is the side effects are pretty minimal. She feels a little loopier and a bit more unsteady ("I wouldn't want to walk across the street by myself"), but otherwise ok. Walked the farmer's market in the U District and had a nice lunch with friends outside. Spending the afternoon in the garden, reading and enjoying the fragrances.

You never know what the treatment will bring, so you sort of hold your breath. I feel like we can let it out and know that the rest of this month, barring something popping up, will be manageable. As long as someone keeps an arm on her.

Can't get much more eloquent than this...

Dear Loved Ones,

I hope this finds you all well and settling into the lazy days of summer. This is such a wonderful time when life feels expansive and we stretch beyond our cozy in door routines to embrace new travels and adventures. Somehow our lives feel lighter and more on the cusp of such a wide array of possibility. Quite exciting time. ~smile~ I am taking this time to pass along some tough news and am going to trust that you all will find a way to accept and support each other. After meeting with Kaplan yesterday, it is looking very likely that the odds of coming out of this health challenge on the other side is relatively slim. After profound discussions with my family, we are committed to keeping open minds while still acknowledging odds of a lengthy survival are not good. As a result, our focus will likely will shift to the importance of quality of life. My men and I are all on the same page on this one. We don't know what kind of timing we are talking about. I continue to feel good and strong while still acknowledging subtle little changes that indicate my condition continues to progress.
Today, I start a low dose of chemo. Expectations regarding efficacy are low but can buy some time. It would be wonderful to share another holiday with you all and just move through a full year appreciative of every moment and opportunity to express my love and gratitude to you all for supporting me in building a life well lived. Thank you so so much. As we move forward, it is my intention to quiet my schedule down a little in order to find time to write in the journals I started for the kids years ago, to spend meaningful moments with my close friends and family, sit in wonder and appreciation at our great good fortune, and savor all the meaningfulness that is possible. I have visions of this being a profound and meaningful, nourishing and positive time. I hope it is not defined as primarily sad but glorious and reflective of a life well lived. ~smile~with sparkles, and colours and hearty laughter accompanied with big hugs where that squeeze is hearty and cannot be confused with a polite brush but wussy brush agains the cheek. Really squeeze. I'm giving you permission.
So, that's that. It is my intention to keep my appointments that are already on the calendar yet ease back after that. I am not going pack my days and social calendar as I have in the past but know that I carry each of you with gratitude in my heart and truly appreciate and love what each of you has contributed to my family's journey. I will try to keep in touch via email but will likely keep the visits down. The love meter stays high, though. ~smile~
Thank you, thank you, thank you all. One woman could not ask for more wonderful and live sustaining friends and family. You've helped make this a journey I wouldn't trade for the world. ~smile~
So much love to you all,

With so much love,
Meagan

Temodar it is...

We met with Kaplan today. Comforting in many respects, plenty hard in others.

She is going to start a chemo treatment, a once a day pill, that apparently has reasonably mild side effects. Temodar is unique in that it crosses the blood brain barrier. So if it's effective, it's going after both body and brain. He's not supportive of Interleukin-2 for the time being. Too toxic for her and for her brain. So there was a discussion about treatment and efficacy and quality of life. We see him again in thirty days and she will have a brain MRI two days before that. That will give him time to assess chemo outcomes as well as give her brain more time to calm down. She has a tumor on her arm which is a convenient gauge. Doing the Temodar is a pretty low risk low side effect decision, that doesn't compromise her ability to do IL-2 later.

Interestingly enough he wasn't concerned about IL-2 and interaction with seizure medications. If she goes on IL-2 at any point she'd stay on them. While she is reducing the dose (over two months) of one of the three antiseizure drugs she takes, he was quite adamant about keeping her on the Kepra. Like forever. And the steroids for that matter, for the time being. So apparently the clinical trial issue over treatment and seizures is part of their protocol agreement with the FDA, maybe? At any rate I surmise he isn't opposed to IL-2 for her ever, it may be something we could consider, but in the context of potential benefit relative to risks (significant) and life quality during and post treatment (awful during the two weeks and apparently for several months thereafter - it's a hard recovery). No doubt we will discuss it after our meeting on August 3rd.

We took a walk in the Arboretum afterwards and then had lunch outdoors at Cactus in Madison Park. Very rejuvenating. She wants to think of the rest of the way forward as a process, not an event, and make it a lovely process the entire way. Kaplan didn't think there was immediacy if nothing left worked, but he did say months, maybe 3 maybe 6 maybe 16. That took a bit of pressure off Meagan who was more fearful it was more immediate. This way it doesn't feel as negative or there is a rush to settle certain things. She can take it as it flows. And she wants sadness low and humor present.

It's really challenging for me to keep it all straight and understand the choices and consequences. It's triply hard for Meagan with her cognitive issues. So lots of re-explaining. It's also pretty clear there are lots of matters of judgment and the individual's disease history and physical state can lead to one choice over another. She, and I feel pretty darn confident that Kaplan is looking out for her best interests and recommending doing what can be done based on her state and knowledge of the true efficacy and impact of the drug or combo in question. Meagan gets that there are few treatment options left and their outcome potential quite slim.

I get the distinct impression, I could be wrong, that even though two of the clinical trial locations have said no, the other probably not, but not categorically no until an in person meeting and review of the file, that he'd be opposed to that course even if it was offered based on toxicity. And because all of those require her to be off antiseizure meds. Let alone free of any brain involvement, which we will know about in thirty days.

I definitely feel numb right now. So much to process.

I Can Do It...

What "it" is, can be left open. But it is more uplifting, has a positive connotation.

These were the words (essentially) Meagan uttered as we were driving back from seeing her Dad (plus numerous other assorted relatives) out at their beach place in the Port Ludlow area. She was pretty relieved to have a day which didn't involve thinking or talking about cancer - just a fun time with family.

But as we were driving across the Hood Canal bridge - she wanted to talk a bit about her disease. The hardest part for her seems to be reconciling the highly probable outcome with hope. If you have no hope, how can you function? We've talked about various ways to look at it. For example, to just live in the now, live in the moment, and make each day meaningful. This latest approach seems helpful.

Because the "it" could be anything from a treatment, to a scan, to a surgery, or to a process at the end. It's like the swiss cheese theory of tackling big projects - take a bite here and there from what might seem a huge block of cheese and pretty soon it's gotten a lot less weight. While the project at the outset might seem daunting (eat that whole block of cheese??), if you focus on one bite at a time and do it and celebrate its achievement, that's a good thing. It's progress. Similarly, while she can live her life meaningfully and be in the now - she can also make it positive by focusing on one thing at a time - whatever "it" is, and being told - "you can do it" seems helpful. And it opens the door to doing things well at different stages of the disease, depending on progression. And having some optimism and support.

It's fascinating how the mind works...

Reflections

I bet you all can guess what I wished for on the occasion of my 55th birthday yesterday. Absent that miracle coming true, a couple thoughts.

One, I just find it profoundly comforting to know how many people there are out there who care so much about Meagan and our family, and show it in so many ways. Meagan often speaks about the imagery she conjures up about her "coat of arms", which is all of her friends and loved ones wrapping her up in their arms as she heads for one treatment or another. After the stroke that imagery has been harder for her to grab onto, for reasons I can't comprehend. But the other night, when she was in the midst of one of the emotional storms, she talked about it, and needing to find it again, to help with the journey ahead. I envision it in a slightly different way. I think of it as a safety net, but not in the traditional way - I think about the images I've seen trying to explain Einstein's theory of gravity and space time - where one imagines a stretched piece of square rubber (infinitely wide and long) and the planets and stars are like bowling balls dropped onto it. How far each one depresses the rubber depends on its mass. There is more, but that's the only part of the imagery I care about. [The depression created by bowling ball mass is gravity and anything going past that object, like a photon, would have its path altered by it]. I feel like our family has this taught rubber sheet underneath us, the rubber sheet being the love and support of all of our friends and family and depending on the event (the mass) it holds us in place, involving more of the love and support the larger the event. I was reminding Meagan about that when we were talking about how many people came to the hospital for both of her emergency experiences. We could not do this journey alone, and I feel that presence underneath us even if we are by ourselves in some waiting room.

The other thing is about comfort. Meagan doesn't want pity or sadness on this journey. At this point I don't even think she wants people to say they believe she will make it, that miracles happen - because frankly, that creates a false hope. She'll take it if it happens, but given what we know about this disease and how it's presented in her case, she knows the likely outcome. What she would rather have is that she wants to know that her coat of arms is there, to hold her hand (metaphorically and physically) and say, "we are here with you and for you". The clinical and medical part of the journey will be what it will be. By necessity it will be more left brain than right. But whatever decisions are made then need to be implemented - and whether that is tough treatment or non-treatment - she wants to go through it comforted by all, and with appreciation for what she has. As she said, it just doesn't seem as scary or difficult when you have someone holding your hand and saying, "I'm with you every step of the way". That connection is what matters, and makes the disease journey and outcome less relevant.

Lastly, perspective matters. We were on a walk yesterday, about an hour loop originating from our home. The last leg is walking south down the hill from View Ridge and being able to see downtown Seattle, the Cascade and Olympic mountain ranges and Mt. Rainer. It's a beautiful vista, and the walk was very nice with the sun peeking out and all the gardens in full bloom. Her comments were that she felt so much better being out and seeing all this - that it somehow puts everything into a little different perspective. It's one thing to be at her chair and doing email or sitting in our garden and reading - those activities and that perspective are much more introspective and draw her in to thinking about her disease and all the people she needs to see, and the schedules she needs to coordinate, and the things she needs to do, because every day is precious. And it somehow makes the disease the center point. Yet, out on a walk like yesterday, with a view of our little corner of the world, there is a recognition that the world and life is greater - and beautiful and complex and comprised of eons of time. So it puts things into a little different context, moves the focal point a bit, and that is somehow more comforting and helpful.

Neither of us really know how to go about this. We are making it up as we go along. Meagan does know when things feel right and comforting to her, even in the face of the dark and scary places. Losing some potential (and more promising) treatment options has put the dark and scary places in much closer proximity. But neither us us want that to overshadow what we have or to block our appreciation for what's around us. And we could not do that without drawing on the support of the coat of arms.

Ummmm...spoke too soon

It comes out of nowhere sometimes. An innocuous question, a comment, simply planning for the week ahead. I suppose it's a bit like watching a tornado form in front of you and then head toward you - with no escape route or cellar to hide in. The good news is it usually only lasts and hour and a half or so. Then resolve builds, the comforting words sink in, the cognition kicks in a bit better. It really sucks to have to deal with the medications and the resulting swings of emotion, especially when it just falls off the cliff. I feel so bad for Meagan, she wants to understand, but between the stroke, seizures and meds, sometimes it is just hard for her to grasp the possible schedules, options, treatments and comprehend what they might do. So in the repeating and clarifying - it can end up feeling very heavy and negative.

It sorta is. It doesn't mean we can't live each day joyfully and meaningfully. We can and she should make sure that each day she is doing things she loves. Which for her is all about connections and relationships. She won't create a bucket list - I think that's a guy thing. She will focus on her calendar and schedule and making sure each day she is seeing the people she needs to see and doing whatever projects and work that bring her joy. I've told her she never has to shop, pay bills or do laundry again.  Wait, she didn't do those things anyway...

A Little Sun Works Wonders

Just being outside lifts the spirits. Meagan went on a long walk yesterday and that always seems to help. As I type this she is outside with her friend and hairdresser, Alicia, who is giving her wig a trim. Talk about a salon; our garden is incredible, with the magenta peonies blooming and the seven foot lilies making an impressive backdrop.

It's funny how life moves forward. Even after the trauma of Thursday night. The boys are busy with tournaments and work and that helps us not be as worried about them. We have definitely noticed that the medications really affect her still - she is pretty good if she gets up early, until the 9:00 dose, then starts to get a bit fuzzy and forgetful. The emotions don't seem to hit her quite as hard in the morning as they do at night - maybe it's the coffe or the sunshine or the promise of the day ahead. We have decided to hold off on the evening dose until right before bed, so we don't have to experience emotions enhanced by the drugs. They are plenty on their own...

Reality Bites

The gravity of the situation is sinking in. We had a long family "discussion" last night. Suffice to say someone was pretty teary.  Actually more than teary. The boys were incredible. The focus became more about how do you live each day with meaning, and make sure you do, say, instruct, and write everything you need to no matter how much time you have left. It's something we all should do, because you never know.

Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.

Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has  presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing),  and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.

So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".

She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.

As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.