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.

"Don't you wish you were with someone else?"

This is the most recent question in a long line of questions (do you love me, do you still love me, do you still love me as much as you used to). It reflects increasing insecurity and unease with her mental and physical state (separate from the actual cancer). I don't think it's said with an eye to the future and after she is gone. It's a fear perhaps, that I will abandon her in her hours (weeks, months) of need.

Reassurance is the only answer. And when she hears it the tears come and the relief is palpable. As a caregiver there is so much attention paid to the logistics and medical issues that it is easy to forget what is the most powerful need. So I'm stepping up the dose of the reassurance medication.

At Nordstrom...

again, except this time it is the Nordstrom Medical Tower at Swedish for a visit to Seattle Radiology for an MRI this afternoon of her neck and right brachial plexus. Both of these are location areas which would generate nerve sensations resulting from tumors pressing on areas of the upper spine.Then we meet with Kaplan tomorrow morning at 9:00a.m. to discuss the results. Many things on the plate:

1. Brain tumor treatment - gamma knife this Thursday.
2. Discuss excision of tumor on her upper arm - she wants it out.
3. Start of chemotherapy.
4. What to do if there is anything showing up in the MRI.
5. Follow-up scans of tomo therapy treated spine.

Sequencing all this will be interesting...especially if she has to do chemo and radiation in parallel...

In the meantime it is just a lot to keep her apprised and steady. She was pretty upset last night as she knew she hadn't been thinking well yesterday and was having a hard time following things.
It was also a challenge this morning trying to figure out where her back pain was - the ibuprofen she's been on the last couple days to ease her arm pain has helped with her back (and knee) but she couldn't remember the location of the pain. Kind of makes it hard to figure out what areas to scan or whether to scan. And she can't remember the onset of the pain and whether it is fall-related or maybe cancer-related. I can see the difficulty ahead for many caregivers with loved ones who have memory issues  - just figuring out what is going on and where is hard. And you can't just do a full body scan whenever something is amiss.

Breathing slowly today....

"Is it worth it?"...

Her back was painful yesterday, and she noticeably winced when I was parking the car at the treatment center and bumped the curb (not that hard mind you) and the car jolted a bit. She had taken some ibuprofen just before we left home and it hadn't kicked in yet. She then asked when the radiation was supposed to reduce the spinal tumor so it wasn't impinging on the nerve. I thought the doctor had said about three weeks but wasn't sure.

She went right in for treatment when we arrived and while she was in, Dr. Landis came out to the waiting area and I had a chance to ask him, after mentioning she was still feeling it in the back. He said it usually was around three weeks that shrinkage happens - but he can't tell if it's actually happening. Even though the Tomo Therapy radiation uses real time CT scanning to position the patient, it can't make out the tumor as well as an MRI. So we will have to wait until she gets her MRI - usually about a month after treatment conclusion - to see if it's working.

I told her this on the way home and she sorta broke down, and asked the question - "is it worth it?". She has been pretty frustrated of late and I think this was a general, emotional reaction to all the treatments and surgeries and medications she has had to endure, and resulting insults.  I instantly told her "of course it's worth it", and talked about buying time with good quality of ife and reminded her that the pain is usually manageable with ibuprofen, but she had taken it late yesterday. She is on anti-anxiety and anti-depressant medications and took those late also.

We agreed she would start taking those right away in the morning when she gets up, before her 9am anti-seizure and steroid medications, so that they have a chance to work and have her feel able to cope. We recently upped her dose after consulting with Dr. Kaplan, as she has been pretty sad and teary for the last couple weeks. With the proper dose and right timing she will be able to cope better.

Hopefully then she will realize it is worth it. But it does point out how grueling (mentally and physically and emotionally) a debilitating, life ending disease can be. I think she has handled it quite remarkably given the circumstances; far better than I could have handled it. If she needs a few meds to help smooth out the rough spots - no problem. As she has said, it's not that they make the sadness or emotion go away - it just makes it a bit easier to deal with them.

I suspect at our dinner last night to celebrate Casey's twentieth birthday, which was quite enjoyable for lots of reasons - including sparkling conversation - she would have definitely said all the treatments were worth it.

To Help or not...

ANOTHER challenge I face is when to let Meagan go it alone or when to help. Picking the wrong answer generates either the evil eye or increases her risk of injury. This is especially true in unfamiliar environments.

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.

What is it with Guys?

This is kind of a rant. I get the inherent differences between the sexes and over the years I've had enough books thrust at me by Meagan ("Men are from Mars, Women from Venus") to explain the differences and provide instruction for me to become more (here you can fill in the word: vulnerable, communicative, non-critical, non-judgmental, empathetic, open, able to talk things through, etc.). Being a guy I know when things are challenging emotionally and when the flight response kicks in and I have to fight the urge to "run to my cave". I also get that guys still have that macho thing and whether they know it or not, there is the status hierarchy thing, and then with all good intention - not bringing up topics which put the other guy in a situation where they show weakness or vulnerability (this probably is happening a lot in parts of the real world with unemployment of middle age white guys being so high). I also know that guys tend to focus on work or sports and having been a stay-at-home dad when Meagan went back to school to get her English degree at the UW, understand the awkwardness of being in a social situation and seeing guys having to deal with my response to the question: "so what do you do?". Guys are still defined mostly by what they do, not who they are, and conversation tends to stick to that realm. Or the kids. My point in all this is I think I have an ability to assess things from multiple perspectives, but am still puzzled and irritated by the following.

As a caregiver I have received an incredible amount of support from our female friends and family. It's really pretty amazing. Caregivers are often forgotten, period, because after all, the person with the cancer deservedly needs attention. When you have a situation like ours - where it has gone on for some time (and hopefully will continue for a while longer)  - there is even the danger that the attention wavers from the cancer victim - I am so grateful that is not the case with us. As a caregiver I have received thoughtful cards, email notes, offers of support, invitations to coffee, books, and gifts (including one great massage appointment at a wonderful spa) from the females. And in person they invariably want to know how I am doing, and invite me to talk about how I'm feeling and provide expressions of support and empathy. It's probably not surprising given the kind of people with whom we have surrounded ourselves over the years. So I am very grateful for this support  - it has truly helped me in what really is a tragic (and long term) situation with our family.

So here is the "but". Where are the guys? I can count on one hand the guys who have reached out and come close to matching the response of the females. I might get an email or facebook post once in a while that is a one liner - "if there is anything I can do, let me know" (note: this may be the single most unhelpful offer someone can provide - it's the equivalent of the Hollywood producer saying, "call me").  In the last year (it is coming up on our official diagnosis one year anniversary in two days) I have received maybe three substantive cards from my male acquaintances. I can reliably count on two men to reach out regularly and invite me to coffee or tea to just talk. In social situations I never get any inquiries into how I am doing or any expressions of empathy or understanding - even when they have deep knowledge of the situation. Over the last weekend we were at a large celebration and I was talking briefly with an older guy I know (one generation above me) whose wife had gone through cancer and strokes (you'd think there would be a little common ground...) and his one comment to me was, "I know what you are going through", before he asked me what I thought of Microsoft's executive management (as if I care...). Nobody else even acknowledged what I might be going through or asked a single question. If I brought it up in any way to a guy it was reliably brushed aside (so you pretty quickly stop doing that - I am not a masochist).

Really, it's weird. It's like the elephant in the room maybe. Maybe they think by asking the questions - "how are you holding up?", or "it must be hard, what are you doing to take care of yourself?" - it will open up an emotional situation that they find too uncomfortable. Maybe they don't want to bother me or make me emotionally upset (better not to say anything to rock his boat even more) and think it's a good thing to not say anything. Maybe they are clueless? Narcissistic? It's not like these are Neanderthals - these are all bright, educated, professional men who are married to great women. I just don't get it.

Meagan and I often talk about the gifts that cancer has brought - not that we wanted them - but we have learned important lessons and been the recipients of marvelous gifts and enhanced relationships as a result of her disease. I have learned from my female friends and family and a few males what one can do in this kind of situation for a caregiver that will be meaningful. I know that most of my male friends are going to be in my situation eventually - for their spouse or parent or loved one. I now know what to do in that situation and I will do it. Because they will need it and they won't be getting it from their other male friends.

Hurricane.....Meagan

Is it coincidental that on the day Irene hits the U.S. coast, we had a hurricane come ashore right here at home? I've written in the past about the mood swings which have hit her due to the medications, and the challenges she has when things are out of a certain zone. When your personal health is going through dramatic negative changes, and you get health news which swings you from one end of the emotional spectrum to another - it is not surprising there is a need for stability. We have tried to accomplish that - but it is not possible to simply freeze things. I try to cocoon her as much as possible and create the time and space for her to feel comfortable - such as not scheduling things too early so she can move at her own pace to get ready in the morning.

At our home, we now have two young adults living with us, which is a good thing. They have made personal sacrifices to be here with their mom during this time, and it has definitely changed the trajectory of their lives, not for the good. So we have tried to accomodate their needs for personal space, to make this the best living arrangement possible. Given we have a large enough house, it was a matter of changing the function of certain rooms, and one significant change was for Meagan to move her studio to what was my old office. That was difficult for her - although she understood and supported it - nonetheless emotionally it felt like a statement was being made about moving her on.

Over the last while we have been following through on some of our earlier decisions, and that has involved some minor construction. Even though we have a fantastic contractor, who she likes very much, it is still disruptive, noisy at times, and can occur at inconvenient times. Such as when you are going through one of your emotional valleys. So this morning, we had some work going on and it triggered a pretty dramatic response. Of course reiterating the logic of it all was not helpful. Our expressions of empathy fell on deaf ears. I suppose it is almost impossible for us to feel how she is feeling, when what she wants is stability and her space, her home as she knows it, but what she is getting is change. And change is very hard for her right now - because it is a portent of things to come in her mind - it represents something else.

Even after Riley made a brilliant argument to her about how these changes were all about family (and not about the cancer per se or prepping the space in any way for "after"), and being able to be together better, and have space he needs and some common space that is more conducive to family movie watching - even though she knows it is true, it was still too much. And we are guys - we just can't deliver what she needs at times - even though some of us are going pretty far beyond our comfort zones.

Even though we can empathize and bend over backwards to support her - we cannot freeze things. Change does happen. It should happen. It's frustrating for us when she gets out of sorts at previously agreed to matters - even though we know it's because she has forgotten or the context has changed for her. Because of her state of mind, it is hard for her to empathize the other direction - the cancer sort of trumps all. We get it. But it is frustrating and as much as I would like to be a saint - it isn't always possible.

Cancer sucks.

Meagan's Latest Update - The Day Before Spine Radiation Starts

Dear All,

I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.

Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.

As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.

Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty  Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence  to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.

So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~

Much Love,
Meagan Anne

A brief follow-up to the earlier post labeled "Time"

I don't want people to misconstrue the earlier post describing her changed capabilities. It was not meant to discourage people from contacting her. It was to describe what she is going through (cognitively, physically, and emotionally) and provide some explanation for why she might not be responding in her usual manner.  And to assure people that contact is welcome and received, even though it might not get responded to.

I made a point in that post about how important it was to her to manage her own schedule and communication. All the changes that have occurred have left her in a dependent state in many respects. This is not comfortable for her. She even hates that I have to drive her everywhere. She was proud of her identity and ability to be a smart, high functioning, independent person. So given the changes, while I can step in gently in certain matters - such as keeping her on track with medical appointments  - she has made it very clear to me that she wants to be in control of her schedule and communications - it is not something for me to take over  - I have neither the right nor the will. Because it allows her some measure of independence and freedom and control. That is very important to her when so much of her other aspects are out of her control - due to medication, radiation and the impacts on the brain, and the stroke effects. She has more than enough capability to decide how to fill her schedule, even though some of the details might be fuzzy. And even though the usual tools - email, phone, Facebook - take more time or don't get looked at for a while. She also realizes that she needs to create her own time to handle her emotional and physical responses to the events, and to engage in important activities in her studio - even at the cost of not being as responsive or seeing as many people as she would like as often as she would like - but it is a conscious choice.

"No Side Effects" - hah!!

Even though she has a lot of confidence in her radiologist - her statement that the Gamma knife treatment wouldn't have any side effects is a bunch of bunk. Meagan definitely feels fuzzy, not able to think as clearly. Her speech is affected - hard to get words out and get the right words out and sometimes a bit of slurring of the words - so she is slowing down her speech to be understood. Of course it's enormously frustrating - aside from the whole disease progression thing. Hopefully temporary.

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.

Repetition

One of the many challenges with Meagan's memory loss and cognitive shortcomings due to the insult to her brain and the medications is the necessity of me explaining things over and over or responding to repeat questions. It takes more patience than I am sometimes able to muster, and I can get a bit short or cryptic, which is certainly not fair to her. She is seeking to understand her situation, in all its fullness and possibility, and I can tell when she is really trying to grasp at something. But it is difficult for her.

What is particularly challenging is when it is around the course of the disease and discussing where we stand and what are next steps and possible outcomes. Because she doesn't remember much I have to outline the various scenarios and outcomes, and then she usually needs a lot of clarification. So I get to experience the "re-traumatization" of description, while she is coming to an understanding. Over the course of the past week we have had this conversation several times, although she does not remember much about the prior conversations. So it's frustrating for both of us.

Additionally, she is coming around to the perspective that she just needs to live her life regardless of condition. So she has expressed an interest in getting back into her studio, doing more things, and generally not acting like a sick person. She wants to be around people who are positive (and not morose about her condition) and live a life of joy and not miss any good moments because she is dwelling on the possibility of a shorter life, even though she is aware that coud happen. So there is a yin/yang conflict - as she asks me about her condition and what is happening treatment wise and what it all means - she can legitimately become upset and emotional (compounded by the medication) and we have had many teary talks about the future. She is quite scared and sad about those possibilities. Yet she also wants to live on a day to day basis in not a pollyanna kind of way by ignoring the disease, but just not focused on the probabilities of her disease and likely outcome - instead focusing on the good and the potential of the immediacy of the moment for connection, joy, and fulfillment.

She is going to start seeing her therapist again, who she likes very much, for coping tools and help. The time period after her stroke, when she was in a very positive frame of mind are long gone, the seizures and medication seem to have eliminated that.

Just When I thought It Was Safe....

Right before I made the matcha tea this morning - I heard a slightly different tone from Meagan. It appears she has been affected by someone's sad reaction to her "news" or the way she is and her "nonplussed" attitude may have gone away a bit. The brain damage that gave her an "all right brain" approach and no interest in discussing or considering disease progression may be on the mend.

"I'm not going to be around very long, am I?". How the hell do you answer that question? I did my cabana boy best - told her she is a person and not a statistic, that no matter what happens we are going to live each day in the moment and live it fully, that yes, she has a serious disease, but we all die sometime and the quality of your life is more important than the quantity, and that even if we knew she was going to die in a couple months we wouldn't change anything about our lives (it's not like we want to leave friends and family and jet off around the world), and even if Dr. Kaplan at some point says there is nothing more we can do, we'd have time to take care of the things needing taken care of.

She got teary of course. But we talked about it some more - not in great depth and a with a balance of hope and optimism, but tempered with the general knowledge of the seriousness of her disease - she doesn't want to get into the nitty gritty details. So it was a difficult situation (again) but at the end she seemed ok with where she stood and how she felt, and hasn't raised it again today or shown any evidence of thinking about it or it being a traumatic discussion. So maybe the good brain damage is still helping. But it's a fine line - she wants and deserves to have some hope. Yet there is the backdrop of being in the throes of a terrible battle - one now being waged on two fronts - the brain and the body (because the treatments for one don't affect the other) that may be larger than can be overcome.

I always feel terrible after these discussions, not just because of contemplating the future and possible negative scenarios. At some level I want to share with her everything I know about her disease (treatments, outcomes, probabilities, challenges) so that we are on the same intellectual plane, which will put us on equal footing from an emotional perspective. And make us partners once again. Yet I also feel a great protective instinct and desire to keep her from the fear which puts her head in a negative space so that she can't enjoy the life she has (I do this partly from knowing her and what she wants and how she has explicitly said she doesn't want to focus there). By protecting her and softening the truth, it does make it better for her, I'm convinced. But then I've missed the opportunity. So I feel terrible because my internal conundrum is unresolved and I have to live as the one who sees it both ways.

The last thing I'll say for this post is that for those of you who read this, and interact with Meagan - do your best to be with Meagan fully and enjoy each and every moment and opportunity. Make it about life, and being positive and discussing and enjoying the experiences of the now. She's reading the paper, slowly. And is interested in the events of the day. And is always interested in your life and your relationship. But don't bring up the seriousness of the disease or issues around disease progression or outcomes. Because it's not about us, it's about her.

I can't remember which modern day philosopher said it (but I will attempt to paraphrase it while I butcher it in the process, but it was something I used with her this morning) but the gist of it is that humans are unique among creatures in their ability to essentially look down on themselves and see the span of time from the beginning of their life to the end. And we are unique in our ability to contemplate our own death. And it is that contemplation of death which sets us apart, but also gives us the knowledge and ability to appreciate and live fully the life we have now. We will all die someday - it's a question of "when", not a matter of "if". The measure of our life and the uniqueness we have is that ability to live each day fully knowing of our eventual demise. It's a bit harder for sure if you think that death may be closer than you really want. But it really shouldn't alter the way you live. Meagan is choosing, to the best of her ability, to live her life as fully as she can. I support that, and hope everyone else who comes in contact with her will as well.

Day One of Reahabilitation

Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.

New Duties, New Blog Title

I guess it was not enough to be a cancer cabana boy. I thought that was a pretty worthy challenge. It was a knee buckler at times, but the work was steady and the client great, even though the pay was lousy.

But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.

Scan Day, Again

When you have a chronic disease such as melanoma, scans become part of your life. Hopefully at some point they become less frequent than our monthly ones at the present. Most patients end up getting them quarterly, and then managing aspects of the disease (i.e., tumor removal). The ultimate goal of course is to become disease free, but for melanoma patients currently that is not realistic, you simply want to be NED (no evidence of disease).

A Shocking Revelation

Meagan and I want to have a threesome with NED.