Guys: Part Deux

I've had the enormous good fortune to become friends with one of Meagan's oldest male friends. He responded to my earlier post about guys. I think his insight is brilliant and wanted to share it, with his permission. 

"I think the questions you asked today are extremely valid.  And I think there are a myriad of reasons for the male response.  We can look to individual motivations or to socializing patterns for clues to behavior.  But the older I get the more I realize that it really isn't all that complicated.  True, we layer on rationalizations and excuses for the way people respond, look for clues as to the inner-workings of those around us like they are a code to be deciphered, but I truly believe that biology presents itself as a king full of riches when in actuality it's nothing more than a pauper with a few tricks in a tattered bag.

I think we men are full of fear.  Fear that comes in a variety of flavors.

Nick, you are a strong, extremely successful man.  That's enough to deter most guys right there.  What could we possibly offer that you couldn't supply yourself, and probably better than we could at our best?  Who are we to offer insight?  Perspective?  Like it or not you are an alpha.  To admit to ourselves that you require assistance . . . well, what does that mean for us?  If you can be vulnerable, what chance have we?

Yes, I'm also convinced that we eventually turn any situation back on ourselves.  That's not necessarily narcissistic. It's human.  A survival trait. 

There is also the fear, through our inability to 'fix' the situation for you, that we might make things worse.

There is the fear - a basic, primal, 'magical thinking' - that tells us that if we give voice and recognize the severity, the reality of what you are experiencing,  that somehow we will also somehow be touched or bring illness into our lives.

There is the fear that if we talk, we will feel.  And, among most men, feeling is weakness.

There is also the fear that we are interfering in an extremely personal time for all of you.

And we are afraid of a thousand other major and minor things that twist inside until all we can do is offer platitudes and change the subject.

I believe this is what happens with most men. Biology is a harsh mistress.  So much of what we feel, what we do, what motivates us and pushes us towards one action or the other is driven by the electro-chemistry of the brain . . . so much it's just stupid."

Pretty interesting perspectives. Much to ponder here. What can I do to help my male friends and acquaintances feel safe asking questions (it's not necessary to offer advice)? What can I do to make them comfortable hearing about my feelings? Or is anything I do useless in the face of biology? 

I don't mean to blast all my my male acquaintances and friends. I just think this is a very interesting issue and certainly one that I care about for individual and broader reasons.

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.

Radiation Treatment - update

The treatment continues to go smoothly. Meagan likes the staff and doctor very much. The Swedish Ballard Cancer Institute radiation facility is very small - a brand new free standing building directly across the street from the hospital's main entrance. Its scale is quite nice - personal and non-institutional. She's become quite friendly (are you surprised?) with the technical people who set her up each day and zap her. The treatment itself is painless and her only complaint is that it does not last long enough so she can't fall asleep and dream about her coat of arms.

I think we are starting to see some signs of budding side effect fatigue though. Yesterday after treatment she went to lunch and walked around Ballard quite a bit, and then came home and a had a chat with a friend. By 4:45 she was wiped out and slept from 5pm to 6:30pm, when I finally woke her. What will probably make sense is for her to take a nap right after lunch so she can be more present the rest of the day.

Radiation treatment is kind of weird in that it is such an invisible and non-consequential treatment (except when aimed at the brain). So we are in this funny kind of suspended zone - we have this new daily routine, which is not unpleasant - and we assume the treatment is working, but in the meantime we know the cancer is doing its thing elsewhere and there is nothing we can do but wait. With other treatments, such as surgeries, there are more visible signs of the effects of treatment and there is action involved with follow-up care. Or if she is in the hospital, there are clearly a lot of things to do. With radiation treatment - you watch her nap. And try to catch deliveries or people at the front door before the dogs become aware and they start barking like crazy and waking her up. I may post a "Do Not Disturb" sign at our front door when she is napping...or lock the dogs outside in the backyard.

Identity...and Self Image

I wrote recently about the impacts of cancer on Meagan's identity. There was a quote from the book I read ("About Alice") about how the biggest impact of cancer is that it "robs you of your identity". With Meagan, mostly of late that seems to have centered around her mind and her abilities (to write, to read). She's been upset about her newfound state and worried about whether it's permanent or the temporary side effects of medication and treatment. It's so hard to say. Lately she has been more forgetful, and having a harder time tracking and understanding what she reads, and stringing consecutive coherent thoughts together. It seems to be in there - at least on the verbal part - she knows what she wants to say, often, but it comes out a bit off.

She had her Gamma knife radiation treatment of the two brain tumors a bit over two weeks ago. She wasn't supposed to have any side effects - but she did. The speech issues seem to have resolved (the slurring and inability to come up with the words quickly). But her cognitive ability seems to have declined steadily since then. It could be there was additional swelling, and it is having an impact, and it does take 2-3 weeks before any swelling resolves (according to Kaplan and Vermeulen). This is even though she is on steroids (an anti-inflammatory drug). She's been concerned that the new treatment (The Tomo therapy of the spine) is reaching her brain - but I've told her that is not the case - it is very concentrated and has no effect outside the beam area. So all I can do right now is try to assure her that it is likely a side effect of the past treatment, in combination with the drugs, and that it will likely resolve. But it is distressing. Last night she decided she needed more laughter in her life and instead of trying very hard to read and comprehend the book (again, part of her identity) but failing, she was going to start watching more of the videos we've picked up for her (such as the "I Love Lucy" series). It is a concession to the cancer, one she is not making willingly or lightly. But the effort to reward ratio is out of whack with the reading, and given what she is experiencing overall - it is probably a wise concession, at least until her comprehension capabilities return.

The other part that has been really tough of late is around her appearance. Really two areas - her hair and her weight. The radiation treatment has caused a loss of hair on the back of her head, and she has short hair elsewhere. She got a good look at it last week and was not at all happy. So the wig came back on. The good news is her hairdresser friend, Alicia, came over last night and colored her hair - returning it to its "natural" color. It also helped to de-accentuate the difference in the back between her scalp and the hair. So I think she will feel better about going "au naturale" - because frankly she looks darn cute with her pixie cut in the front and sides, and when you see the bald areas in the back - which includes her horseshoe scar from the craniotomy - it makes one realize you are seeing a cancer survivor and she should be proud about that.

The weight is a more profound and troubling thing for her. She's up at least ten pounds, which for her historically is a lot - outside of pregnancies she has weighed about 103 pounds as long as I've known her. It is clearly related to the steroids. But that is not very consoling. Especially given she is likely to be on them forever, and maybe at larger doses over time. She has had to pick up some new clothing, looser tops and larger and stretchier bottoms. That is hard psychologically. She sees her closet with clothes she likes but cannot wear. She is worried about when the weather changes and she needs to get some cooler weather clothes and can't go to the "petite" section anymore. Her self-image has always been around cute, form fitting clothing. This is the woman who got "best dressed" in high school her senior year! So it's another aspect of the cancer that affects one's psyche. I can tell her, and I do, until the cows come home, that she looks great, cute, and no one will know or care. But she knows, and also sees how her face is rounder and that the medications have caused the back of her neck to be a bit fattier as well. Last night she looked at her ankles and commented on how much they have gotten fatter. That is quite an overstatement - maybe a tiny bit - but she had pretty darn bird like legs to begin with...

I guess the point is - there are changes happening to her body which are not within her control and she doesn't like them because they affect her appearance. That deviation from self-image is another insult from cancer - on top of the brain insults. The cumulative impact of all these things adds up - making her more fragile emotionally, So there is a lot of shoring up that a cabana boy has to do, along with all her 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.

Ballard - Day 2

It didn't start out well. Got the call from the radiation clinic that the machine was down and the tech was on the way and they needed to push us back to 2:30. The proton accelerator thingamajig is down? Who do you call - the physics lab at the UW? And what do they pay them for repair services - like $1,500 per hour?

At any rate we got her in at 2:30 and it went fine. Of course it did throw the whole day off, but such is the nature of treatments, appointments and equipment. I recall one of her very first scans last year, when we still didn't know if her cancer was malignant that the air conditioning was broken and without it the MRI room got too hot so we had to come back in the afternoon. I guess we are used to this - I really have adopted a zen like, "que sera que sera" approach. Which is fine if you are a full time caregiver and that's all you do. Everyone at the clinic got pushed back and it was kind of funny, all the old ladies were jovial about the change and commented on how they had juggled schedules, while the two old guys were just grumps about the delay. Perhaps a gender thing????

We did get a chance to wander a few blocks in Ballard and have a little lunch. It has certainly changed and is quite hip, with remnants of Scandanavian culture around. Plenty of coffee shops. But a real independent bookstore too. Meagan wandered it happily.

No side effects (from the treatment, we are still under Ballard's sway). This bodes well, at least until the fatigue kicks in, usually week two.

Treatable...uncurable - what gives?

The state of cancer treatment is still in its infancy. The big three modes (surgery, radiation, chemotherapy) are still the most used (and most toxic and harmful), even if mostly successful. The emerging treatment of targeted gene therapy and use of the body's own immune system to kill off the cancer (after first finding a way to "open the gate" to the cancer cell as it were), is still a long way from proving effective or creating a durable response. If you have an immune system cancer such as melanoma you are really screwed  - because if your body's immune system can't defeat the cancer or the latest therapies don't work for you (as is the case with Meagan), then you are buying time. And you have to use the old line methods (I hate to even call them "treatments") to control the cancer as long as you can.

In her last email Meagan made an observation that she had been given a little hope because we had been told the cancer was incurable, but then another doctor had offered an option which might help the cancer in her spine (the Tomo Therapy radiation treatment - which she has started). I don't edit or correct her emails - after all when it takes her 2-4 hours to write the darn thing who am I to play editor. It's the overall content and tone of her emails which count, not the details. That is among the many reasons I write this blog (but not to correct my wife!!). I am trying to do many things (it has evolved as this adventure has continued), some of which may be useful to people down the road when they become caregivers or cancer patients (probably most of us). Besides helping everyone understand the particulars of how Meagan is doing and her experiences, it is also to describe the impact on us as human beings and husband and wife, the medical processes and decisions, and the real life issues which come up when you are dealing with cancer.

So one point of clarification to her past email. We know that her cancer is incurable. There is the slimmest of possibilities that she lives long enough that some drug gets approved that she is able to take which will give her some long term durable remission. But drug approvals take a very long time. All the drugs in the melanoma development pipeline are targeting very specific genetic mutations, which we know she does not have - so there would need to be some new development of a drug in the near term and it would have to go through a very fast track process to be approved - which in rough terms would mean 2-3 years. She likely does not have even close to that much time. She is ineligible for any clinical trials due to her brain tumors and seizures - so she can't jump to the head of any line of research drugs.

She is aware of all this - even if she forgets or gets fuzzy on the details. She realizes that we are in a situation of tumor management - slash, burn or poison the tumors as long as you can to extend your life at as high a quality as you can. Those methods are not really treatments per se, they are methods to keep the disease in check in some way. So they are treatments without an expectation of cure. They do matter for sure. Because unchecked tumor growth eventually causes death - but before it does so it can cause a lot of debilitating effects. That is why the news we initially got - that the cancer had spread to her spinal column and that it was untreatable (not, in her words, "incurable") was so devastating, and why the emotional swing was so dramatic when we found out there might in fact be a treatment (the Tomo Therapy radiation to the spine) that would have some effect on the tumor growth there. It is why this last three weeks has been the hardest part of her life (because thankfully she doesn't remember anything about the stroke or craniotomy or seizures). Because once it is untreatable and you have to let the disease takes its course - then all that is available to you is pain management. If you are "lucky" you get the disease in a place that doesn't cause pain (such as the liver). Having cancer in the spinal column is a really bad draw of the cards (even if not all that surprising given the cancer is in her brain and it's all connected). Because the way it advances in the spinal column is by growing and putting pressure on nerves. That can cause many things, well before it advances enough to do you in. Like pain, and loss of body function below the area on which the tumor is impinging.

So we like this new "treatment". It offers the possibility of control of the spinal column cancer, in the area being treated. She also realizes this is only affecting the area under treatment - cancer could already be growing elsewhere in her spinal column or in her brain (we know it is growing elsewhere in her body too, but those areas seem benign for the moment). So what is likely going to be our schedule over the next number of months is rounds of scans and treatments. She will complete this treatment by mid-September. She then has a brain MRI scheduled as a thirty day follow-up to her last brain zappage. If they find anything they will treat it (zap it). Thirty days after the completion of the Tomo Therapy radiation they will do another detailed MRI of her spinal column. If they find anything, they will zap it.

So it's a cycle of scan and zap. She's already being poisoned - she is on the chemotherapy called Temodar. It's possible Kaplan might want to switch to a different one in a month or so - which is more toxic and has more side effects.

Her biggest concerns at this stage are loss of mind and pain. Continued zappage of the brain takes its toll (because as targeted as the Cyberknife is, they take a bit of margin, and that is loss of brain function). If the cancer really blooms there and she has to do whole brain radiation, that is a scarier proposition. We are hopeful the Tomo Therapy radiation controls the cancer in her spinal column because she does not do well on pain medication and it will make her loopier than she cares for.

So we are realistic about the nature of the disease. She understands possible paths, although does not want to think about them. Nor do I. She very much is trying to live in the now and appreciate and enjoy what she has - and going through a round of treatment that might be relatively benign is a good thing.

We knew she had malignant cancer the first of July of last year. At that time we thought she had breast cancer. It was almost one year ago - September 1st - that we got the call from Kaplan to tell us that it was not metastatic breast cancer (a tough enough battle but one which most women are winning) but metastatic melanoma. That meant that she had metastatic melanoma for at least the prior four months before the July diagnosis (she first identified the lump on her breast in April). So she has unofficially had Stage IV melanoma for over 17 months now. And still alive to tell the tale and we are not expecting anything imminent in the way of a near term demise. Believe it or not that puts her in the category of a long term survivor of this disease. Especially given that it is in her central nervous system. So we are grateful that she has made it this far. And that it appears we still have a ways to march ahead.

Which we could not do without the love and support of all our family and friends.

First Treatment of Radiation Complete

So far no side effects. There was the (dreaded) possibility of nausea, because there is unavoidable radiation to her stomach as a byproduct of the overall radiation procedure, so when they gave us the anti-nausea prescription, we hustled home to get it filled at Kattermans (our pharmacy) and wait it out here at home (not such tough duty, the garden is gorgeous).. So no Tour de Ballard today. But we did swing by and get her favorite frozen yogurt with toppings. That went down no problem. She's napping outside now, a good sign. Not related to the treatment. The side effect could emerge anytime in next couple hours. If it does, besides taking the pill right away, she will take it one hour before each treatment and that should do the trick.

One down, 14-19 more to go.

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.

Plan Finalized

11:30am, each day starting on Thursday (unless he can't get the plan completed by then, in which case it will be Monday).  Still expect 3-4 weeks of daily treatment.

I think Meagan gets how this is a positive development in quality of life and not merely life extension. I don't think she realized that spinal tumors don't really cause end of life, although they can eventually, when they grow so much they impinge on the nerves going to vital organs. More typically, spinal column tumors lead to compression of the spinal cord, which causes pain (a lot) and usually loss of bodily functions below the areas involved. The presence of the tumors and cancer in the epidural space means the cancer is fully active in the spinal column and central nervous system (including the brain, which we knew). So when you can't treat the spinal column tumors, and you suffer the debilitating effects they cause, it usually means that when they emerge in other parts of the spinal column and brain, you decline further treatment, because you are extending life, but at a greatly reduced quality.

So this Tomo Therapy is fantastic news. It is a means of control of the tumors. If we can zap tumors we can keep her quality of life high and gain life extension. It is worth treating further brain tumors and other tumors. They can use the Tomo Therapy on other parts of the spinal column if necessary (but you only get one shot at each area - due to toxic radiation overload concerns). Between that and the Cyberknife, the radiologists have a pretty good arsenal to control the central nervous system tumors, as long as they emerge in a localized and smaller way. This technology development is really amazing. Yes, it is expensive. Yes, it makes our overall health care costs go up. But who would not want to have this treatment now that it is available?

A Plan

Met our radiation oncologist, Dr. Landis. Looks like we will be spending a lot of time in Ballard over the next 3-4 weeks. She is scheduled to start radiation treatment either this Thursday or the following Monday. She will have 15-20 treatments, one each day, M-F, each lasting only about 10-12 minutes. There is some set up time but commute time aside it should only be about thirty minutes in the office. It will be at the same time each day, still unknown what that will be yet.

They are targeting two areas. The tumor in her tailbone and then an entire stretch from her second to lowest rib bone (T-11) to her lower back (L-3). There are twelve identified tumors in the epidural space but they assume it's also in between each one so are bathing that entire segment.

Right now we are waiting for her set up CT scan and positioning session. Based on this they will be able to accurately place her each day so that the Tomo Therapy machine can do its zappage with a high degree of accuracy. It's interesting - we learned the Cyberknife treatment was not appropriate in this case because it's too precise and they need to bathe a segment completely. But this machine is not as crude as the old time external radiation and is able to target a broad enough segment to do the job without hitting vital organs. So side effects are supposed to be minor. Mostly fatigue.

The people at the clinic were great. The doctor looks like he's 22, but really is 39.

Time

Everyone knows how Meagan is very much a social creature, who thrives on contact and connection with people - biological family, created family, and friends. It really defines her. She also does not want to hurt people's feelings - she is quite sensitive to that. Even in her best days she was constantly fretting about that - managing her calendar so that she could see the people she wanted and needed to. She would talk about the need to create time for herself to work on her Milton project (illuminating "Paradise Lost") and it was always a struggle to get enough time to do that and meet her social obligations (which were visits with people). Fortunately she had email and Facebook, and in the mornings and evenings she could catch up with people even if she couldn't see them in person.

Well, those days are long gone. First of course, she can't work on her Milton project - which is really frustrating. She has a hard time just writing out notes and letters. Although she has pushed herself back into her studio to try to write some letters I often find her in tears because her penmanship is not what it was, and in fact it is quite sloppy and there are lots of mistakes. That violates her sense of beauty and validates the changes in her. There is quite a slip between the cup and the lip as it were. (Note: Today we are going to get some wide ruled note paper as she seems to be able to stay between the lines better that way). It also takes her a very long time to write a short letter - not in the Mark Twain sense - but it is slow and laborious. So any note and letter anyone receives is filled with sweat and tears, a true labor of love.

Second, she simply cannot process or use email and Facebook the way she once could. She can't follow the train of thought while she reads as well and her eyesight changed as a result of the stroke so it's harder to read (being addressed). She can't keep up on messages, gets confused about what she has or has not responded to, and it takes her quite a long time to type a response. Her visual field deficit affects her typing ability, so it is a mistake laden process - and as a result she doesn't hardly use Facebook at all and only types a few responses. So that reduces the contact she has with people, to her regret. That then increases her guilt factor, which I have to try to allay.

Third, she is very confused about dates and times. She is trying to use a white board on the table next to where she sits to track her appointments and schedule things. She wants to try to schedule a few things each week, and leave some down time for herself. It is important to her that she take as much responsibility as she can (for her own sense of self, identity and independence). It was pretty successful for a while, but then the Gamma Knife brain radiation treatment happened and her mental abilities went downhill - hopefully temporary - but nonetheless she isn't as able to keep track and plan as she once did. It was and is very difficult to plan ahead for anything given the whirlwind of activity we've had in August:

August 1 - brain MRI
August 3 - meeting with Dr. Kaplan - discovery of 2-5 brain tumors
August 4 - meeting with Dr. Vermeulen (radiologist) to discuss treatment plan
August 10 - meeting with Dr. Kaplan about pain in her tailbone. Eye doctor appointment.
August 11 - CT scan of body. Preliminary results from Kaplan - spinal tumors identified
August 12 - Gamma knife brain radiation treatment - two tumors addressed plus a bit of mop up on former site
August 15 - Bone scan of body
August 16 - meeting with Dr. Kaplan - discuss treatment options, referred to Dr. Vermeulen
August 17 - 3 1/2 hour body MRI
August 18 - talk with Dr. Vermeulen - 12 spinal tumors identified - referred to Swedish Ballard. Talk to Dr. Landis's office and set appointment for Tomo Therapy planning.
August 22 - appointment with Dr. Landis. Appointment with eye doctor - get new glasses.

So during this period we found out she had two brain tumors and had them treated and discovered she had 12 spinal tumors and have arranged treatment for those (remember - this is after being told by Kaplan on the 11th they were essentially untreatable and then on the 16th that they might possibly be treated in 2-3 months). The emotional swings have been incredible. Plus her tailbone hurts. And from the 13th on (day after her Gamma knife treatment) she has been fuzzy and had a hard time thinking (side effects). Much of her "free time" during this timeframe was simply being in shock and trying to process what was happening - and obviously in no condition to receive visitors.

We have also discovered that she has a hard time getting going in the morning. She needs time to orient herself, and have some clearer thinking time before her medications are administered. Being rushed or pressured is distressing. It also takes her a long time to get ready. So we are pushing it if something is scheduled by 9:30, 11:00 is much better.

Lastly, she has just needed quiet downtime - unconstructed time to ponder, read or walk. The weekends have typically been that refuge time. It is restorative and enables her to mentally and emotionally meet the week ahead, which she usually knows is going to be filled with doctor appointments, scans or treatments. For example, this week she starts off with her fitting for her new eyeglasses and then the planning appointment with Dr. Landis. But after that we have have no idea what the treatment plan is going to be and when it starts - so it's impossible to commit to other things. That is stressful given what she wants to do in terms of seeing people.

All this is noted so that people understand what she is going through and how it affects her ability to see or communicate with her loved ones. It's a challenge for me just keeping her on track with her medical appointments and getting her ready in time. I also have to provide the emotional support when her personal needs supersede her perception of how she should be spending her time or when there is a conflict between her personal needs and those of others. But right now, her needs are paramount. I cannot imagine  - even though I have been through it with her - how she truly has felt over the various discoveries and insults to her brain and the fear she must have over the possible courses this could take. I do know how much time I spend consoling her when she is wracked with emotion and crying. So I respect her need to create some time and space for herself to just be, and recover whatever sense of "center" she can to meet the challenges ahead.

Melanoma Drug Approved by FDA

But it won't work for Meagan. It targets a genetic mutation she does not have. It does illustrate the direction cancer drug research is heading - moving from slash, burn and poison to smarter targeting of individual mutations.

http://www.webmd.com/melanoma-skin-cancer/news/20110817/zelboraf-approved-for-late-stage-melanoma

Identity

A friend sent me the book, "About Alice", by Calvin Trillin. It's a wonderful book, a love story really about his wife. Alice died of her cancer related treatments. One line she said in a speech really struck me - "the worst thing cancer can do is rob you of your identity". How true...

That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.

We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.

Who Knew There was More in Ballard than Lutefisk???

http://www.swedish.org/Services/Cancer-Institute/Services/Radiation-Therapy/Tomotherapy

http://www.swedish.org/Media-Files/Documents/Cancer/Brochures/SCI_TomoTherapy.aspx

New Treatment

Got the call from Dr. Vermeulen at Seattle Radiology. She reviewed the detailed MRI of Meagan's spine taken last night. Surprise, surprise! She does not want to do Cyberknife on the tumor near her tailbone. She (with Dr. Kaplan's concurrence) wants Meagan to go over to see Dr. Landis at Swedish's Ballard Cancer Institute where they have the latest, greatest, slickest radiation machine ever invented and undergo radiation on ALL TWELVE of her spinal tumors. It's called Tomo Therapy. It's like Cyberknife in that it precisely targets the tumors. But it can do more at a time. And uses real time CT imaging. Hopefully meaning fewer side effects on the surrounding areas. Apparently it's the only one in Seattle.

So we meet that team this coming Monday at 11:00am. I don't know what the treatment schedule will be. Dr. Vermeulen did say, "low and slow". In reading up on the treatment, the typical approach is 5 days a week for 4-6 weeks. Each treatment only lasts about 5 minutes. They do say you experience the same kind of overall side effects extended radiation treatment can bring - fatigue, anemia, and hair loss.

I consider this pretty good news. It is a preemptive strike on the spinal tumors. If it can shrink them, it means they can't grow to do damage or cause pain. It is not a cure and not systemic therapy - it is a way to zap the bad guys before they do bad things. More could emerge, anywhere in her body really. But rather than the wait and see approach we were operating under as of our last visit with Kaplan (because his next option was direct chemo in the spinal column but we have to wait for her brain to calm down from the Gamma Knife treatment), this is action. I like action.

Made it through the long MRI

Checked in at 4:45 last night, she was in the machine by 5:15 and didn't emerge until around 8:30pm. Longest MRI she has been through yet. No hitches. They aren't looking for anything new - that was all on the CT scan - this is a fine grain that should pinpoint exact location from 3-D perspective of each tumor and it's precise measurements.

They ought to have pretty detailed scans of her torso - they did four separate runs of quarter sections of her body. I'm supposed to get a call from the radiologist this morning to discuss the results and what her recommended radiation treatment plan is. It could happen pretty fast. Apparently it might not be the Cyberknife, it could be another machine downtown that has a broader beam.

The good news is the Meagan doesn't have to rush this morning. She has come to really value unstructured morning time without the pressure of having to get ready for anything.

The Back Story...

A double entendre...

This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.

She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.

The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.

It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message  you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.

Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it  - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.

So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.

As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.

The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.

Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?

This whole scenario is another reason this job completely sucks.

But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.

At least it's sunny out...

How is it that bad news is good news?

when it is better than the terrible news you were expecting.

Frankly, what Meagan expected going into today's visit with Dr. Kaplan was that she would have untreatable cancer in the spinal column and that her life expectancy was greatly diminished. We based this in part on the call we got last Thursday night from Dr. Kaplan giving us the preliminary results of the CT scan. He told me then, small tumors at the base of the spine - treatable with radiation, and tumors in her spinal column - untreatable.

When we got there today, his tune was a little different. Yes, there are small tumors at the base of her spine, thus causing the pain. We are heading to Swedish Radiology and they will be doing a Cyberknife radiation treatment of those. She has a detailed MRI tomorrow and then the "zappage" will follow. The hope is the radiation treatment shrinks the tumors and the pain goes away. That part we expected.

The part that is different is the identified tumors on her spinal column. Yes, those exist. They are distributed up and down the column in the epidural space. But they are not untreatable. Kaplan said he has a few other tools in the toolkit he can employ - in time. They are different chemo regimes that are direct infusions into the spinal column. But that can't happen until her brain calms down from her most recent brain radiation treatment, which was last Friday. The wait interval is 2-3 months. So for now, we watch and wait. And hope that the current chemo she is on, Temodar, has some effect. He also said those spinal tumors would not cause anything imminent. So that was a huge relief for Meagan. For two reasons. One, it gives her more time. Two, at least having some tools that can be tried is better than being able to do nothing.

What we learned is that it is really bad to have any expectations or to make predictions - especially about timelines. We don't know how the disease will continue to progress and present, and Kaplan would not and could not give us any indication of what might happen in the spinal column and when. The emotional roller coaster of having one set of expectations and then have a different outcome (even though positive) is completely draining. So after the meeting we agreed the most sane way to proceed - is to live it day to day, deal with the symptoms and treatments as they emerge, and don't get into predictions, prognoses or timelines. It isn't helpful and can be downright debilitating.

D-Day

I believe that today we will find out the extent of the invasion of the cancer in Meagan's spinal column, and elsewhere. We have a meeting with Dr. Kaplan at 11am. He will have sufficient data to be be able to tell us where the disease is and what are the implications.

She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.

She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated).  So we have had discussions about what death with dignity looks like.

It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".

Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.

More later today...

The Bookend Emotional Life

The thing about being a cabana boy is that you work a split shift when it comes to emotional support. That's not quite true, but fairly close.

The duties of a cabana boy in general are not quite 24x7, but in my case about 18x7. Aside from the emotional support, there is all the logistics support (appointments, pills, managing household, etc.), medical management (learning, interpreting, explaining, counseling), and, in the case of a stroke victim, accompanying her or chauffeuring her everywhere. Then there are those precious hours when I'm awake and she is not when I can do the worrying and thinking - about how to deal with all the future scenarios.

There is one aspect though that is difficult - that split shift emotional support. During the day, when Meagan gets going, she doesn't want to think about the disease. She wants to get done the things she needs to get done and be as functional as she can be. Sure, there are times when the emotions well up and as the cabana boy you need to be there. But they usually aren't deep and usually short duration.

But there are two times when it can get both deep and long. One is in the morning, when she's had time to sleep on it, and wakes with newfound thoughts and wants to discuss them over coffee. But they are of a particular category - more about understanding the disease progression, or balancing seeing friends and the things she wants to get done, or how she needs to prepare herself or think about the disease so she can function. It is an emotional time, but it has a certain quality and is usually linked to some activity, idea, or status.

But bedtime is another story entirely. She has been able to hold check on the deeper emotions throughout the better part of the day. Even though she has engaged in activities or been exposed to information that trigger emotional reactions. So when her head hits the pillow, it's not time to sleep, its time to let loose the pent up emotions. Now as a cabana boy, you've already put in a 17 hour day and are probably pretty exhausted. So when your head hits the pillow, you are thinking sleep. Uh uh. Your most difficult hour is about to begin.

In the early stages of the disease, besides comfort and reassurance, there was always the possibility of providing optimism and hope. About the new research, new drugs, treatments yet to come. At this stage of the disease, when we are pretty much at the end of the rope, and moving from incurable but treatable to incurable and not treatable - there is not much optimism and hope on offer. The best that can be provided is to focus on the quality of the remaining life and focusing each day on that. But that message really doesn't carry the day. So you are left with the comfort part, while she and you, express the emotions associated with the cruel realities of where she is. It is by far the hardest part of being a cabana boy, and comes at the hardest part of the shift.

"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.

Yesterday

She was a bit fuzzy all day, presumably an after effect of the radiation. She also had difficulty speaking, and although it got a bit better throughout the day, she still had to slow down and enunciate clearly and formulate her thoughts before talking. So the radiologist wasn't quite right when she said, no side effects from the Gamma knife brain radiation treatment....

She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.

She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.

She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing  - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.

Post Treatment Reflections and thoughts on Meagan's letter

There is a big difference between getting about 5 1/2 hours sleep and almost 8 1/2 hours sleep. I feel quite a bit better today; yesterday, I was not so good. The day before a scan or treatment I am usually too hyped up to sleep much. So by 8pm last night I was yawning a lot. Meagan was tired too - even though she napped throughout most of the procedure yesterday and most of the afternoon. I'm glad it went well, obviously, now we just wait and see how long it takes before the radiation does its thing. The thing about radiation and melanoma is that there is about a 70% success rate of what they call "local control". That means in 30% of the cases the melanoma ducks the radiation and continues to grow. You always have the option at that point of hitting it again. But t's a tough beast and tends to be radiation resistant.

When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.

Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.

More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.

What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.

Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.

I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.

She's out

Getting dressed and heading to U Village to satisfy her frozen yogurt craving. Doing great.

She's in...

Gamma knife treatment underway. She's listening to Johnny Mathis and napping. A 49 minute treatment. It's now only two tumors after they did the high resolution MRI this morning. Once she's out they unscrew the headset, make sure her 4 holes where they screwed the headset in are ok, give us post treatment instructions and off we go. I suspect it will be a very relaxed afternoon of napping and recovery. She's in good spirits the Adavan works like a charm.

No Fair

It's my hunger pangs against her taking some adavan (like Valium ). Even though she had to suffer through having this big old headframe put on shes now in no pain and dozing. Heading to MRI room

Update - direct from Meagan - dated August 11

Dear All,

This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~

So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.

On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.

This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.

Updates will follow.
Much love,
Meagan

Meagan Doesn't Recommend the SeaRad Barium Bar

Seattle Radiology is where she had her CT scan today. You have to drink a barium cocktail beforehand. At Swedish Radiology you get a choice of berry, mocha or banana. Here you get one choice, vanilla. And it's not good.

But it was a success. Since she couldn't eat beforehand we had brunch afterwards. We like the Sunflower Cafe. She ate heartily.

Got the call this afternoon from the Gamma knife people, our timeslot got moved up and we need to be there at 6:00a.m. Yikes! Plus no food before so it means a very early lunch at best. Since I eat or don't eat in solidarity with her, I hope I don't cheat tomorrow. There is even a Starbucks at the Swedish Radiology facility which is part of their Cherry Hill complex. Coffee doesn't count as cheating...as long as I don't put too much cream and sugar in it.

Dress warmly

It's bad enough we have no summer, with temps in the morning in the low 60s. But here is a tip for those getting scans, or rather for those waiting for people getting scans. Because of the heat generated by the various machines used for diagnostic purposes the air conditioning is excellent and the result is the waiting rooms are darn cold. The patients get warm blankets while they are being scanned. But no such thing out here in waiting room land. So dress like it's winter!

Scans scans and more scans...

Things have a way of popping up. All we had scheduled as of yesterday was an eye doctor appointment for today, and her Gamma knife treatment of the brain tumors on Friday. But she woke up this morning complaining of some pain in her lower spine. That generated a quick call to D. Kaplan's office and we were able to slide in and see him after the eye doc appointment.

He couldn't feel anything suspicious near her tailbone, but there is no doubt the pain is there and newish. Meagan has never had back trouble and she is not sitting anymore than she usually does. So he ordered up a couple more scans for her. Tomorrow is a CT scan of everything below the neck. Monday is a bone scan. It has been over 6 months since she had her body scanned (at the conclusion of the Ipilimumab treatment). We know she has lung tumors. But since the end of January the focus has been on the brain and we haven't worried too much about what is going on internally, especially since she has felt pretty good. Skin tumor surgeries aside.

So tomorrow - CT scan, Friday - Gamma knife treatment, Monday - bone scan. Just when you think you have a glimmer of some down time...ha!

At least by early next week we will know what the state of the state is. And her brain will have been treated. In some ways, these scans are not exactly wanted - because ignorance is bliss.

It takes a Village

I mean this in two ways.

One, University Village worked well yesterday. Mild weather, lots of people, and Meagan wandered to her heart's content. I camped out in a nice spot and read and every once in a while she would cruise by and say hi, or I'd see her in the distance. After an hour we talked by phone (you have to call twice - her phone is in her purse and by the time she realizes it is her phone ringing and gets it out, it has already gone to voice mail. So you just call again right away because at that point it's in her hand). She then called me at 2:30pm to say she was tired and ready to come home - and also to rant about how disgusted she was with the book selection at Barnes and Noble - too much popular fiction trash and not enough literature. She now only wants to go to Elliott Bay Books or Third Place Books. And as it turned out, separately we both had the identical thing for lunch  - I had walked over and gotten a frozen yogurt and later a cookie, and so had she. Funny how marriage does that to you...

The other reference to "it takes a Village" is to acknowledge the love and support from our extended network of friends and family. We simply could not do this journey without you. We are so appreciative of the meals provided three times a week through the sign ups at the Meagan's Fairy's website. It makes such a difference - for example last week, with the scan on Monday and the results on Wednesday, and Meagan being in shock Thursday to Saturday (no joke, I think it really was a form of shock) and me trying to support her - we were pretty incapable of pulling a meal together. So to have incredible food delivered is just so helpful. The only problem is our tupperware collection - it is out of control and we'd love for people to get theirs back!

Most of the time we welcome a knock and a short visit at delivery or pickup of dishware. But sometimes Meagan is wiped out and isn't up to a visit, so I'll let people know and keep it a front door exchange.

There are also all the other acts of kindness and support; the letters and cards, the walks, the invites to dinner, etc. There is a balance keeping the dance card full enough so she sees as many as she can (as she has indicated in her separate letters) and keeping her within the bounds of her capacities. That may change after Friday's Gamma knife treatment - hopefully not for long.

But truly, to our Village, a most heartfelt "thank you".

Trying to give her a bit of independence today

Meagan is feeling a little constrained by the need to have someone around her at all times. She is normally quite sensitive to being an imposition on anyone, and even the fact that she can't drive and needs someone to shuttle her makes her uneasy. She also clearly needs someone to cross the street with her, so she can't walk alone; she's prone to stepping off the curb without paying attention or being able to see cars coming.

So today we are going to try something different. After I drive her to an appointment and wait for her for an hour, we are then going to drive to University Village. I am then going to drop her off, probably at the Barnes and Noble. Then I'll park and find a different place to hang out. That way she can get the run of the Village pretty safely, read, wander, get coffee, window shop, whatever she wants to do. But she will know I am close by and available to get her in a heartbeat. Mentally she just wants to feel normal and this could be a good way to do that. If it works, we'll do it regularly.

What day of the week is it?

The days seem to sort of blend, except for particularly momentous days (scans, results, treatment). It doesn't matter much whether it's Monday or Thursday - because it is always Cancerday. And that means a regimen of pills on schedule, making sure appointments are organized, providing reassurance and memory support, "hovering" somewhere within spitting distance or making sure someone else has the baton (in case of emergency - and given she has the three new brain tumors, the risk of something happening went up), and responding to questions. It means putting on my coat of armor to handle the emotional ups and downs, as well as helping her keep hers on.

It's been more challenging of late. Not just the finding of more brain tumors and the upcoming Gamma knife radiation and making sure I know what that is all about. Not just the issue of helping her process this new news and find a way to have some optimism and a way to live each day given this awful disease and how it's presented itself. Those are all bad and sucky in and of themselves. But she has definitely been more loopy, forgetful, and having a harder time getting meaningful, logical sentences out. Not all the time, but more often. For a while there it seemed to be related to fatigue because it was more noticeable in the afternoon. But lately it's an all day thing, and she even mentioned it this morning  - how she wasn't feeling as sharp. It could be any number of things - delayed response to the stroke or last radiation, a change in medications (we just weaned her off one of her anti-seizure medications - even a reduction can have an effect), or maybe the cumulative effects of the chemo (Temodar).

But it is hard (I'm using this word a lot - need to look up more synonyms) for me, and the boys, when she isn't quite coherent at times. I don't want to correct her or get her frustrated with the condition. So I'm trying ways to "reinterpret" her statements so it sounds like she said the right thing. Like a while ago, she said so-and-so was coming to our house at 9:00 tomorrow morning to go for a walk with her in our neighborhood and would pick her up at 10:30. I replied, "right, she will have you back here at 10:30 so I can take you to your appointment". Meagan said, "isn't that what I said?". "Almost", I replied. I think she's getting used to the situation, so she isn't pursuing much anymore figuring out exactly what the missing or incorrect communication was. Because it is occurring quite a bit more. And I know her communications to some people over the phone when leaving a message have been a bit...rambling.

So it not only is getting more difficult to make sure we are on the same page about particular issues or situations, but it affects the nature of our relationship. I'm even more of a caregiver than I was before. I mean, it has happened before such as after her stroke, but those times improved, and I could see and hear the progress. Here it's feeling a bit more like sliding backward, without a known reason, and even though the Gamma knife isn't supposed to leave much in the way of side effects, you have to wonder if there isn't a little bit of a probability given they are not just hitting the tumors, but some margin around the tumor (which are healthy, presumably functional brain cells).

There's not much else to do but press on. But I worry about this development.

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.

Angst and Confusion

I'm still trying to make sense of yesterday. Meagan feels a sense of palpable relief - that these tumors can be addressed and that she shouldn't pay any attention to probabilities and outcomes. The specialist, Dr. Vermeulen, was very positive, direct, and reassuring. "Oh these are nothing, we can handle these".

I didn't have any doubt that the GammaKnife could zap the new tumors - I have read enough about the process to understand its efficacy. What was far more salient, in my view, was that there were these new tumors. Which means that the melanoma really is in the brain (it wasn't doused in the craniotomy and subsequent Cyberknife of the surgical area) and is spreading (the tumors are not clustered). The odds that these three tumors (yes, three tumors, Kaplan's original communication to us was incorrect) will be the last tumors we see in the brain are pretty low. It's the "seed and soil" theory - once it's spread, it's likely to sprout. Vermeulen kind of acknowledged this when she said that melanoma is capricious, sometimes it will lay dormant for a while after surgery. She did also then describe what whole brain radiation therapy treatment would look like if it came to that. And she described how they could zap other tumors in other parts of the body if it became necessary. She didn't get into any detail about how melanoma can be radiation resistant or that it can jailbreak and show up in lots of places in the brain and elsewhere.

As a specialist - whose job it is to zap tumors - she is very sanguine and clinical in some respects - a thorough professional who has the tools to be able to take care of what she sees on the brain MRI. She also is comforting, but kind of ducked some of the larger issues by laying the responsibility for the systemic treatment at Kaplan's feet ("he'll take care of that and will try different chemo maybe" - not really knowing how much has already been tried and that we are at the end of our options).

So I observed this interesting phenomena of one specialist saying, no big deal we can handle this (and maybe other tumors), and another generalist (Kaplan) having a slightly different interpretation  - which led him to give an overall assessment of outcomes based on the complete picture. I certainly believe that he knew Vermeulen could take care of the tumors which just emerged. But he also knows that it means that we cannot pursue any systemic treatment (beyond the Temodar she is on - which is a chemotherapy which has shown very little to no long term impact - at best you get some short term relief). It also means we cannot do any clinical trials anywhere, even on a compassionate use basis, because Meagan's brain will have swelling and irritation as a result of the Gammaknife treatment and remain on steroids and anti-seizure medication, in fact her steroid dose may be upped for a period after her treatment on the 12th. So he knows that melanoma is in charge, we have no recourse but to just get a tumor when we can, and that reduces the odds of your long term survival.

So it appears that we are going to play the game "whack a mole". Right now we are whacking brain tumors. When you whack brain tumors it means you can't bring in the last big gun out there which has any proven success rate with stopping melanoma (Interleukin 2). So extracranially (i.e., from the neck down) the disease is doing what it wants. Under Vermeulen's approach when a symptomatic tumor shows up, you just zap it or surgically remove it.

In some ways I feel comforted by this, and I sure know Meagan is. Because it takes the focus off outcomes and probabilities and gives her a little hope. Clearly she needs that hope (she has been a complete wreck since our meeting with Kaplan) and the further out there in her mind she can push that day when they say there is nothing more they can do, the better. So between now and that day - she is just going to focus on the facts at hand. And not focus on what the odds are.

It's a little more complicated for me. I'm all for zappage and tumor management. But it's pretty hard to ignore the overwhelming weight of evidence. So I can be of two minds - the mind that focuses on today and the immediate treatment of what needs to be addressed, and the long term forces at work and how little we have to deal with them. But I need to play Meagan's game, because that is what she needs. So no more talk of outcomes and probabilities. Just a focus on what we have at hand. I'll keep the overall awareness of where we are in the back of my mind. And juggle those dichotomies...

Some good news (for a change)

Our radiation oncologist, Dr Vermeulen, is pretty confident they can zap the three tumors in the brain with no cognitive impact. Meagan is scheduled to go in on Friday the 12th for the one day Gammaknife procedure. In by 7am, out by 1pm. She was very comforting to Meagan - told her to ignore prognoses and percentages and just take care of what's in front of you and then live your life. And that she would suffer no impairment as a result of this treatment.

It's what Meagan really needed to hear. She needs comfort and hope. If you talk in terms of outcomes (i.e., average life expectancy when melanoma hits the brain) it isn't helpful. She can't process the ambiguity inherent in statistics in this case and it does her no good.

So we aren't going to talk about how many months to live or how things might be better or worse from a prognosis perspective if X occurs. We are just going to focus on each thing that comes up, deal with it, and move on. So she will have this treatment next Friday, be grateful that it will work and cause no impact, and go from there.

Melanoma is a capricious and dangerous cancer, especially when it hits the brain. Her melanoma is uncontrolled at present. But as long as zapppage works at tumor control for the hard bits, and surgery for the easier bits, who knows how long she can keep the wolf at bay.

Last night was particularly rugged

There seems to be a pattern based on our visits to Dr. Kaplan when we get (bad) news. Actually we've never had good news coming out of his office. But Megan aways feels comforted by him, even though he is delivering bad news. He makes it seem not so scary, somehow gentle and hopeful. Not hopeful in the sense that she believes she is going to make it, but hopeful in the sense she will have enough time, that it's not imminent (like from a tumor bursting, although that could happen), and that she will get her projects done. In the course of this discussion, data and information is provided - and of course therein lies the source of potential conflict later - she hears one thing and I hear another.

We did then go and have lunch and then walked all around Greenlake. We talked candidly and openly about everything. I thought we were on the same page in terms of prognosis, timeframe, treatment steps and expectations, and in agreement on how it should end - hopefully gracefully, gently, surrounded by love and "sparkles".

When we got home, after talking with the boys, and she overhearing one of my conversations - she got pretty upset. Mostly related to the timing (she thought it was longer and my recollections of the discussion were more analytical and clinical while hers were more diffuse) and clinging to ways to have hope (not hope for making it but hope for living long enough that people weren't looking at their watch). Time has, self-admittedly, taken on a new concept for her since the stroke. She doesn't have a sense of it at all. So I think this, coupled with some challenges in comprehension, led her to having the full brunt of the news really sink in after we got home. So there were several hours last night when she was pretty over the top distressed.

But she has a remarkable capacity to rally and the resilience to adjust and move forward. We talked about how even if she lost the capacity to read or write that we could get people in to read to her or take dictation. She is reading a book called, "Dying Well" and I think that is helpful. Later in the evening she looked up and asked if I would be sleeping next to her when she is in a hospital bed set up in our living room (of course I will as long as it's a queen size). Then later she looked up and said, maybe not in the same bed, but next to me, apparently after hitting the section about hygiene and how it goes in the later stages. So she still has her sense of humor and is still a prissy girl.

We both agreed we have no idea how to do this, or do it well. We are just mucking through this process, and an unfortunate side effect is distress. But as Kaplan said during our visit, it wouldn't be normal if you didn't have periods of time when you weren't a mess - because this is tough stuff, the toughest ever.

So onward. I have done all the research on the GammaKnife process and can help Meagan understand it when we meet with our radiation oncologist today, Dr. Vermeulen. That is a more complex process than the whole brain radiation. I really can't even speculate which one will be done - Dr. Vermeulen had not read the MRI results when she had the phone conversation with Dr. Kaplan; she only gave a rough guess about a recommendation based on his description. I expect she will be certain today. The GammaKnife is a one day procedure, the whole brain radiation is done over a number of days. In any event it looks like we will be around to enjoy our beautiful garden and the nice days of August.

Direct Note from Meagan regarding the latest scans

Dear All,

I hope this note finds you all well and settling into the restful days of summer. It is hard to believe that if I close my eyes, and concentrate just a little, I can almost feel that coming hint of fall in the early morning air. It certainly is not a "knock you out" obvious sort of reminder that autumn is around the corner but more a gentle reminder that, like the seasons, Time marches on. It's really a lovely thing.

Well, as most of you know, Nick and I met with our dear Kaplan today and found out the results of our latest brain scan. Though the brain tumors that were removed and zapped two months ago have disappeared others have since grown. They are small, yet do need to be dealt with so our next step is to meet again with Dr. Vermeulan and develop a plan which will likely include gamma knife radiation which will allow for a more controlled approach than the total whole brain radiation (though this could come next if the results are still less than what Kaplan feels is still worth trying). We will set up an app. with Vermeulan and come up with our plan and expect to have a treatment next week (thank god, for my wig "Audrey"). The treatment should be painless though leave me muddled again for a few days. Other than that, the side effects are not bad. We will cross our fingers that this treatment, with the chemo, has some impact. What we do know now is that we still continue to hope to buy time. It is a tough road however as each opportunity for the tumor to be blasted is met now with a corresponding tumor growth response multiple fold. Two months ago we were dealing with two brain tumors, though those are toast, now we are dealing with 5 more smaller ones. The hardest news to share is that, though nothing is cast in stone, is appearing like my quirky life expectancy has been adjusted to about 2 to 6 months. Please trust that I share this with you all not to drum up a whirlwind of sympathy or onslaught of busy bee activity, but rather I hope to just share with you the profoundness of this time and the gratitude I feel to be "awake" to my great good fortune at all. Granted, a lot of this just sucks! A lot of it is such a magnificent surprise! But I hope with practice and concentration and acceptance, I...we...will find a way to find the profound and quiet beauty in many of the shared moments to come. You have all made my life so much for lovely and worth living. You have all made me feel deeply cherished, incredibly loved, especially appreciated and sometimes even funny. ~smile~ Thank you for all of that.

As before, I will be keeping my correspondences primarily via email. It is easier to keep communiques sorted and I can manage them as i have time and not feel totally overwhelmed. I will try to answer all I can, as I can. I do promise to keep you all in my thoughts and send waves of love to everyone of you for your support over the months. My family could not have managed as well without your care and the amazing attention you have shown each other as well. I am so deeply grateful. And thank you too, to the most amazing husband/cabana boy and two incredible young men to call sons, a woman could ever ask for. xoxoxo Man, they have been on one heck of a journey 0f their own and they have risen to the surreal occasion with grace and courage. We are truly blessed.

So, onward...you will hear from me again. All our plans for the next few days have been canceled as we are rescheduling next week and the week after with Vermullen but rest assured we will slip a note in here and there.

Much, much love to you all,
Meagan Anne