More new territory

Meagan has aways been a leading edge kind of person. Whether it be fashion (best dressed in high school) or design or relationships. She has redefined how I view relationships, bringing huge doses of warmth, energy and empathy to many. In our relationship she was always fearless, bringing up topics and issues she felt we had to address. Our house has been a canvas for her personal style and self-expression and her desire to break out of the mold. She has been passionate in her pursuit of family traditions and bringing as many people around her during the holidays as she could.

All this is context for ANOTHER ground-breaking discussion this morning. Talk about thin ice and unbroken ground. It caught me completely off-guard. We started talking about Thanksgiving and how we'd pull it off the way she wants, given her limitations. I reminded her of the volunteers who offered to help and not just participate. That led to a discussion about traditions and she talked about her dear departed grandma's cinnamon rolls on Christmas morning and how Meagan has made them in our household and she wanted to make them this year with my help, which I willingly agreed to do. Then the surreal hit.

She got very teary and started talking about and worrying about and becoming very sad about what would happen after she is gone. Would we (the boys and I) make her grandma's cinnamon rolls? Would we get rid of all the colorful furniture and buy brown Pottery Barn furniture? Would we paint our beautiful walls beige and white? Would we stop hosting (extended) family holiday celebrations? Et cetera.

Wow!

I understand at some level the concern - would we carry on traditions and retain her personal imprint on our house and in our lives so we continue to remember her and who she was. She's concerned we don't value her uniqueness and the special elements she has brought to our lives and that with her passing, we'd erase those, and end up erasing our memory of her.

Naturally, I reassured her as best I could, given I hadn't even thought about this. She admitted that the medications might be driving a lot of the emotion and thoughts. But it was a very poignant conversation and the deep fear and concern about carrying her legacy forward and remembering her was evident. I just need to add another element to my cabana boy duties - convincing this remarkable woman that she will never be forgotten and that her legacy and traditions will carry on.

Forbidden Topics

A perceptive and regular reader of this blog would have noticed by now there are two things I don't write about - sex and our boys. In response to some questions however, I will write briefly about one of these...the boys. I promised them early on I would not write about them and their experiences and emotions relating to Meagan's cancer or their altered lives. Without violating that promise, a brief update (facts and figures) on them.

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.

Mind the Gap

The gap between women and men that is - you know, the "Men are from Mars, Women from Venus" syndrome. Apparently I have been too much like Mars and not enough like Venus. So I've got to figure out how to help support Meagan using "tender, careful and encouraging" language. I totally get what she needs - that space to find some comfort and solace to be able to continue to LIVE while she is alive. It's just that as a guy, sometimes I can't even figure out the right words - it's like being in Germany and trying to speak German and all I know are three romance languages. So I am a work in progress...

This is an incredibly difficult time. I have four things going on at once:
1. trying to understand where she is in terms of disease progression, status, treatment options and impacts, and what that all means - and dealing with scan results that require immediate action. And helping others set expectations.
2. Trying to help support her in dealing with all of this. There is the feeling part and me learning to act and think and talk like a girl. And it is definitely challenged by her cognitive capabilities and recollections. Because if I try to correct her recall, it invalidates her feelings - and most of the time even though she might be off on the details, she's right broad brush and it is about her and her feelings.
3. Trying to help my boys deal with all this and explain it to them in guy talk because that is what they want and need.
4. Processing my own feelings and grief.

Did I say this was hard? It't not, it's super hard.

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.

Guess Who is Tired (Again) This Morning...

I've pretty much gotten used to not getting much sleep. Whether from anxiety or the hospital stay or our pill schedule or road trips I've taken recently - a solid through the night sleep is so rare an event I can't remember when it last occurred. So most days I need to do a power nap at some point - hardly full compensation - but helpful and I am oh so grateful that I have the freedom and flexibility to pull it off.

When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.

Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.

And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.

The Things I Can't (yet) Write About

I'm writing about most of the things connected to this cancer. Including the transformation of being a caregiver for a cancer victim to now additionally a caregiver for a stroke victim. As an aside, the stroke in some weird ways has been helpful, which I will describe below.

But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.

Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.

The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.

The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.

Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????

Road Trip Lessons

A very nice two day ride back with Casey from Boulder, CO. Thus the absence of posts. We made excellent time thanks to good weather. I did learn the the Best "Western Plus" in Boulder meant, "plus noise". Not what I was expecting. The eastern part of Wyoming is pretty bleak country. I had not realized how industrialized Billing, MT was - it appears to be the coal capital of Montana, where coal=electricity. Of course, we had plenty of time to talk, about this change for him and what he's thinking. The crisis with Megan is obviously the trigger event, but he's also using it as a real opportunity to think through his life and what he wants to be, do, and how he can have an impact. He also doesn't want to have any regrets, and being away from Meagan during her treatment was too difficult. I'm so impressed by his new gravitas and thoughtfulness, but one comment stuck out in my mind particularly.