Reflections

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

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

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

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

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

Ummmm...spoke too soon

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

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

A Little Sun Works Wonders

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

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

Reality Bites

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

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

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

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

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

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

Alternative treatments, again...

It seems in every generation there are those who seek to profit from those with challenging diseases not readily addressed by conventional medicine. Even in Meagan's own lineage, a great-great grandfather sold "Barnard's Hair Tonic" that claimed to cure a number of maladies.

Over the last year, I've had to chase down a number of suggestions to see if they would have any applicability to our situation. I've not been satisfied with any of them, especially as most seem to financially benefit the sponsor, don't use transparent, verifiable data to support their claims, or have adverse impacts to the patient. One source I've used aside from simple google searches is this one, Quack Watch.

http://www.quackwatch.com/

Here is the basic information they provide on one popular alternative treatment.

http://www.quackwatch.com/01QuackeryRelatedTopics/cancer.html#gerson

Not all diseases are curable by modern medicine and there is lots of research underway in reputable, controlled environments (and in which the financial interests are clearly disclosed) to close the gap. Seattle is home to some remarkable firms looking to develop cures for our most troublesome diseases.

But if you are ever tempted to go with some alternative method, do your research, and recognize what you are really doing if you go that route. Likely supporting the lifestyle of someone who really doesn't have your best interest at heart.

more not good news

I heard back from the melanoma specialist at Moffitt in Tampa. Meagan is ineligible for any trials there as well, for similar reasoning as NCI. The doctor was very helpful in his reply and suggested a potential treatment protocol using already approved chemo and biological drugs to run by Dr. Kaplan. Although he said it is a very difficult treatment to get through. With a small success rate of uncertain duration. And he also said about Meagan's status in general, "This is certainly a very difficult situation".  Given his stature and expertise in the melanoma world, that was not great to hear. Meagan took it pretty hard, and the gravity of the situation is setting in.

So how do you live each day joyfully, fully, and with gratitude and appreciation for all we have, when options are closing down?

Crummy news

The National Cancer Institute at the National Institute of Health just told me Meagan is ineligible for any clinical trial there. Their reason was not that there was evidence of active brain tumors, or that we had to wait three months from the last brain tumor treatment and be clean of disease in the brain. It was that Meagan's prior brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible". So even if in her scan in thirty days she is clean upstairs, she can't do any of the promising melanoma trials occurring there, particularly the ones using a technique called adaptive cell therapy, where they harvest some of your T-cells, multiply them by the billions, mix them in a secret sauce, and then re-infuse them into your body after you have had 5 days of chemo, followed by another 5 days on Interleukin-2. It's still early research, but anecdotally they have seen more response using this approach and Dr. Kaplan was in favor of us pursuing this. Alas, it is moot at the NCI.

It's a pretty terrible disease when it's metastatic. It's worse if you have brain tumors because you are excluded from any clinical trials that I can find, unless you are BRAF positive (a kind of mutation, which Meagan doesn't have). So the hope is that your brain is at least free of disease for long enough after a particular brain tumor treatment that you can slide into a clinical trial. When you have brain tumors though, most trials have some sort of exclusion, like being free of brain disease for three months, not having any body tumors (hah!), having had prior chemo, etc. 

I have spent the day re-researching all the clinical trials underway on melanoma, through the clinicaltrials.gov website. All the ones that would be relevant have exclusionary criteria for active brain metastases. So if any tumor activity shows up in the scans in July it is pretty much moot - our only recourse will be using established drugs like Interleukin or some sort of chemotherapy (along with radiation treatment of any new brain tumors). Unfortunately those have very low response rates. 

If there is no brain cancer activity, the question is can I find a research institute connected with a hospital and a melanoma specialist that doesn't have the same exclusions as does the NCI. I sent off three emails today to the top melanoma specialists in the country seeking their advice and requesting participation criteria for the trails they are running (which are similar to the NCI trials).


In inquiring on the melanoma forum I frequent, I have learned a lot over the last three months about melanoma and brain tumors. When it goes to the brain it's just not good at all. The brain and body have a natural separation (the blood brain barrier) that makes treatment problematic. So it's almost like you are treating two separate diseases. Even if the chemo worked on the body tumors, it won't work on the brain. There are no treatments which have proven effective yet for melanoma which has migrated to the brain. It really is about control, controlling the tumors as long as you can until a treatment is developed. 


It's really unfortunate  news about the NCI - because at least there was some hope there for treatment of the melanoma in the body. Meagan and I were understandably upset today.

Repetition

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

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

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

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

Buzzin'

Audrey is looking good. What's underneath was looking a little...funky. So out came the clippers this morning for a #2 buzz cut. Ideally it would have been a shave but she wasn't ready for that. So we will do the buzz every two weeks until her bald spots are at the #2 level, then she can let it grow. It looks a lot better and she is cute as heck with her little buzz cut.

Audrey

She's sassy and smart. We are having a threesome.

There's me, Meagan, and.......Audrey - her wig. It appears the Cyberknife brain radiation treatment has a side effect other than brain irritation causing seizures. We are talking hair loss. Not just short hair, but falling out in clumps, patchy bald spots smooth as a baby's butt hair loss. All in the back. So right as she is a couple months out from her brain surgery and buzz cut, and she's moving from Sigourney Weaver/Demi Moore buzz to pretty short but pixie-ish fun haircut- we have major patchy spots happening. Thus Audrey.

We bought the wig back in the Fall when we thought she was going to undergo chemo and lose her hair. They don't take returns when you've taken a wig home, so it's been in storage. How handy. She made a public appearance today. It needs a bit of trimming and styling, but it looks very good on her.

But she probably needs to undergo another full buzz cut. Otherwise she is going to eventually have long har in the front and uber short hair in the back. And it may take a while before the hair returns. So I am getting the clippers ready.

On again, off again - but this time maybe settled

I haven't written much about the kids, out of respect for their privacy. They have clearly been impacted by Meagan's disease, Casey most severely because it comes right in the middle of his college education, Riley less so because he graduated in May. Casey was present for both of Meagan's events, Riley for the second and flew up immediately after the first. They have both been wonderful with their mom.

But we are in a phase of uncertainty and they know the spiral downward has not stopped. Riley had already planned on taking some time off before his graduate school in Architecture plans and live at home and work part-time (thanks to the offer of another friend) and travel. So it works out better for him; he can be by his mom's side, but also keep his life moving along. Fortunately the way our house is laid out (and due to it formerly being two houses) we can set it up almost like a duplex and the boys can have the south end. We re-jiggered rooms (I gave up my office so Meagan could use it as her studio, Casey took over her former studio and we converted it to his bedroom, Riley took over the former guest room and upper connected room), did some minor construction and remodel of the kitchen on that side and Riley is in the midst of a remodel of his spaces to create a bedroom and studio and will paint and redecorate the kitchen and living room on that side.

Casey though has been filled with uncertainty about what to do. He took last semester off to be with his mom and clearly (in a tragic sort of way) it paid off - he was here through both events and has been able to support her during the recovery process. But he has also been away from friends and it cost him a relationship, and while he has been here he has not been able to find something meaningful to sink his teeth into or a circle of friends for support. Combine that with coping emotionally with Meagan's condition and the not uncommon existential angst of his age, and it's been really hard for him.

It's not fair to have him put his life on hold, for an indeterminate amount of time, nor is it healthy emotionally. We of course are torn, we want him to live his life, yet Meagan also wants him by her side because she knows the seriousness of her disease. Up until recently he had planned on returning to school in late August for the Fall semester. It was as he said, the best of the bad choices. Although he didn't need it from us, we gave him permission/license to do this, and I have spent time and money creating options for him in terms of living accommodations, knowing he might change his mind. He asked Meagan two questions: what do you think I should do, and what do you want me to do? She was incredible and while internally she wanted him by her side, did what a mother should do and told him she wanted him to go back to school and move on with his life, and that we'd be able to use technology and visits to stay connected. It was very difficult emotionally to give him this freedom, and she hid the angst within her from him, so he would have the freedom to chose. It was very brave on her part.

But the world works in mysterious ways, and thanks to the generosity and caring of friends, it appears for now that the plans have changed. Thanks to the invitation of a friend of ours, he got involved in a summer intensive program at the UW in art, and it has reawakened his creative self, something at which he has always been very talented. He realized that returning to school would not enable him to continue to express himself that way, he is of too junior a standing to get the good studio arts classes. He doesn't want to lose that right now, which makes a lot of sense given where he is in life and with Meagan's situation. Secondly, again thanks to a friend, he has been given a job opportunity at an entry level. It will enable him to be around people and have the stimulation of the environment, the ability to meet colleagues and develop new relationships, acquire knowledge and experience, be productive and earn some money. That has pretty much sealed the deal and he informed us last night that he intends to stay here for now, and just focus on those two things, and not worry so much about the long-term and try to connect all the dots between what he does now and where it might take him and how it all fits with typical school/work progression. A sound decision by and for him I think.

Meagan is happy and relieved, even though he cautioned her things could change, that he could decide to go back Winter term (after he informed us, she could not help herself and told him of her angst and that she really wanted him to stay). I'm just happy he has a couple things to really dive into and be productive. Where his life and formal education goes from here is uncertain - but he is a smart, creative, hard-working young man and he will figure it out - and he has enough time to do so. I applaud his maturity and wisdom, in knowing himself and what he needs right now.

The mantra we have been living with these past 12 months has been around living in the present, not "future-tripping" (trying to anticipate future scenarios and dwelling on those potential consequences at the cost of not being fully emotionally and mentally present in the day we get to live today). As long as he, and Riley, can live each day fully present and engaged, and be with us while we go through this journey with Meagan, that seems enough to me. I am so very grateful to our friends for supporting us and them in so many ways - but the direct support of meaningful work has made a huge positive difference in our lives and helped settle a decision that needed to be made in a most satisfactory way.

A little better

The tapering of the steroids and getting used to the anti-seizure medication seems to be helping modulate Meagan's emotions and strengthening her optimism. She is becoming less fuzzy, but at the same time more aware of her deficits. Yet each day she is working hard to "reboot" her mind. Doing email seems to be the best occupational therapy - it's slow going but it helps sharpen her mind. Her writing has improved and she is trying to manage her own schedule. She doesn't like the lack of independence and is always sorry for inconveniencing me when I need to transport her and sometimes wait until her appointment is over. But she is getting out, which I think is a good thing - she got her nails done the other day at a salon and I am taking her to the Southcenter area for lunch with a friend. I'll do find something to do while they meet.

What's not better is that she is losing hair on the back of her head (which was growing out) from the radiation therapy. She is not at all happy about that. It looks a little like a newborn with hair whose head gets rubbed from lying down in the back. Hopefully that is just temporary. The parts on her head where she has scars will never grow back, but as her hair gets long enough, those will be able to be covered up. She has one big old horseshoe shaped scar and one divot that seems to have come from some drilling they did on her skull. But in another couple months those won't be as obvious.

Separately, a dear friend made the comment yesterday about the life of a caregiver, which I think is pretty accurate, but I interpet it with a twist. She said, "it's a hard job, but not a thankless job". I know Meagan is very appreciative of my efforts on her behalf, from the emergency situations to the mundane. But for me it's not about getting thanks from her, or recognition of my role. It's really about being thankful for 23 years of life together and two kids and thankful for having her in my life. So each act of support is about me thanking her. I also wouldn't know any other way to handle it. It's not that I am unaware of alternative approaches others might choose. It's just that for me it's the only way I can approach it.

Watch and Wait

That was Kaplan's summary. Good news: can cut the steroid dose down by half. Bad news: tapering down can cause mood effects. More good news: we get our research nurse, Barry from Atlanta back as we are now on the extended follow protocol. More bad news: there is evidence of some small skin tumor activity. That means the melanoma is still on the move.

So essentially Kaplan agrees with Meagan's characterization in that we are in a race. He put the Interleukin 2 start date at around the first week of August, depending on brain irritation status. She can't have new any brain tumors before then. Nor can she have some internal tumor become so impactful that it needs to be addressed. He'd probably put her on chemo first if that happened. Apparently there are some chemo regimens which have some efficacy against melanoma for some.

So she stays on the steroids and anti-seizure meds. We see him again in two weeks. Then we will schedule a tip to toe set of scans for a week or so out. Based on those results we will have a plan. So a waiting period. And a hoping period, hope that nothing internally goes haywire.

Ugghh...

The anti-seizure and anti-inflammatory drugs Meagan is on have some really nasty side effects. The worst is the effect they have on her mood. She has been unable of late to focus on anything other than the negative aspects of her situation. She doesn't remember or is unable to recall the metaphors or mantras or visualizations she used earlier in the course of the disease, which helped her a lot. She is sensing the worry and sadness from the people she interacts with, and then once the people are gone, melts down. It is a far cry from the almost ebullient mood she was in post-stroke.

Needless to say that makes the cabana boy job really challenging. It's one thing to have to do all the medication management, and all the other things, it's quite another to have to be ready for the two to three emotional meltdowns each day. I have a lot of mascara on my shirt at the end of the day.

We visit Kaplan today - I'm hoping she can start tapering off the steroids, which seem to be the worst culprit even though their medical properties are incredibly useful.

To top it all off, Casey and I have been throwing the baseball around out in front of our house  - which is a lot of fun. Unfortunately, it's taking a while for my arm to get used to this and each time out it's been a bit sore and takes a while to warm up. It will get better as my muscles get used to this. But in the meantime my throws can be somewhat errant. I tossed him a relatively gentle and low "pop up" yesterday, but it veered a little left.  And landed on a neighbor's car rear window in the precise location which allowed the whole rear window to shatter. When it rains it pours. So from now on we walk to the park to play catch.

Father's Day Respite

Had a lovely day yesterday. After a relaxing morning, the boys and I went to the Mariners v Phillies baseball game, which was a dandy. We then went to dinner at dear friends' house, with lots of laughs and love. And cheered the victory of a very talented and likable young man at the US Open Golf Championship, Rory McIlroy.

Despite our woes, I was reminded yesterday of the quality of our family, and how each family member can rise to an occasion and that our kids have far more resilience and strength than we really know. I am really proud of my boys (hardly boys anymore but what else can you call them?) and especially proud of how they look after their mom these days. I wish our circumstances had not affected their lives so much, and want so much to protect them so they can live life the way they choose. Regrettably, Meagan's cancer has intruded on their lives, their plans, and their emotions. Worse, we have this great uncertainty about the course of the disease and the potential treatments and impacts and it's that uncertainty which in many ways creates the greatest difficulty for them in adapting and responding.

My Father's Day wish for each of them is that they find the strength and determination and grit to persevere during this difficult time, and that they enjoy the love and support of family and friends to help see them through this.