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.

A Tough Day Emotionally

While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.


I used to think the two hardest general questions were:  "what is the meaning of life?";  and, "what is my purpose?".  Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".


Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,


"Is there any hope for me?"


"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".


Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.


I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug. 


"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.


The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary. 


So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.

Frustration for Meagan

The medications she is on are really a challenge for her. They make her fuzzy, forgetful, and unsteady. For a gal who is darn sharp, this is very frustrating. She hates to be reliant on me because she doesn't want to be a burden. So she will try to do something, like put the dishes away. Many things she is successful at, and I applaud her efforts. Sometimes the results are a tad humorous and have some consequences, like when she tried to open the bottles of non-alcoholic beer with the wrong end of the opener and ended up knocking one over onto the floor, after it was partially opened. She knocked over three full glasses of water yesterday, which she keeps on the table near her chair in the family room. She got pretty upset over it, but we tried to make light of it, and Casey was funny and told her she needed to put the water outside of her wheelhouse.

Unfortunately she is on the full dose of medications until at least next Tuesday, when there is a possibility that Kaplan will start tapering her steroid dose - that will definitely help. I think she is slowly getting used to some of the anti-seizure medications, but we don't see the neurologist for another ten days so any reduction in those is still a ways off.

So in the meantime we will just work to keep her safe and keep reassuring her these are temporary effects and that she will recover all her faculties she had before the seizures.

Numb

There is a period of time after you get back from an extended stay at a hospital in which you are simply numb. While at the hospital you get very little sleep, you have this constant bombardment of noise and stimulation from the ICU, you are trying to process all kinds of incoming information about medical condition and what it means and what to do, and you are tending and caring for your loved one who needs emotional and physical support. Even in the best care facilities like an ICU, the nurses get busy and you need to remind them of things or go find a substitute to change the saline solution or medicine drip. Then of course there is the added burden of managing the (legitimate) incoming requests for visits and status updates. Sometimes I feel like just chucking my iPhone in the trash.

Coming home is a relief in lots of ways. There is still a lot to manage - the medication schedule, the emotions, being the social secretary, the dynamic with the kids, household management and food, and the physical aspects (wound management, navigation around the house safely). But there is a bit more time when she is on her chair or with a visitor and I have some time. And I find myself just completely drained of initiative, motivation or desire to do much of anything. Sometimes I simply sit and stare out at the garden or if I'm lucky enough Casey will come back and want to throw the ball around with me and we can enjoy that mindless ritual of the back and forth of the throw and smack of the catch.

This is just a stage, I know eventually I get my mojo back and start doing the things I would like to do. It reminds of of times when I've gone on long competitive bike rides for 6-12 hours when at the end all you want to do is just sit on the ground and drink a beverage and stare at the trees - because you are just physically and mentally drained. I'm grateful that at least the weather is improving so I can go through this period being outdoors some.

Home, but new phase

It's good to be home. Good to be able to get about eight hours of sleep last night, only interrupted by the midnight alarm for medication. Nice to not hear constant alarms and hospital noises. I realized last night that in the last two months I spent twenty nights in a hospital. I've probably slept less in the last two months than in any period of our lives, including when the boys were newborns. I'm amazed my back has held up so well. Of course my fitness and conditioning for biking is completely shot, and I haven't ridden outside once this year. But maybe for the next month and a half I can get outside, especially if summer arrives, before Meagan goes in for her two week stay for IL-2 treatment.

While we are home, it is still difficult for Meagan and in some ways more difficult for me. The medications she is on for her anti-seizure and anti-inflammatory are not kind to her brain. They make her loopy, fuzzy, forgetful, and not able to think clearly. She is aware of that, and it really upsets her. She wants to be more self-sufficient, but can't, and is upset that she has to rely on me and the inconvenience it means. So she is much more emotional (she cries more). It will likely pass as she gets used to the medications and the medications are gradually reduced.

Being out of the hospital is good, but it puts all the responsibility on me for making sure she gets her medications at the right time and right dose. She is simply not able to self-manage yet. She's on a lot of different medications right now, so there is a lot of organization (my iPhone calendar with reminder alerts is useful that way). Plus we still have some wound management to take care of from her skin tumor removal last week; the dressing needs to be changed twice a day. Having the nurses do all this was pretty nice.

The good news for today is that I acquiesced to the extremely kind offer of a dear friend to get a massage from a person who is apparently fabulous. That is my big adventure for the day. One that sounds pretty good at the moment.

Home and she's napping

In her chair by the fire. Got the dog and kid greeting.

It's Official

Kaplan gave the thumbs up. Going home this morning!

4:00am Lab Draws

Every morning at 4:00 the nurse comes in and draws blood. It's an easy process for Meagan because of her port o cath, no needles. They do this so the printout or computer results are available to Kaplan when he does his rounds between 6-6:30am. Then he can put in whatever orders are necessary, like yesterday when he ordered her up two pints of blood and the transfer to a regular room out of ICU. I'm hopeful today we get the all clear and he gives discharge orders and whatever remaining prescriptions she needs (I filled three yesterday at our favorite pharmacy, Kattermans, and she will need two more, her steroids and an antibiotic for an infection she picked up).

Unfortunately these lab draws require the lights on, so it pretty much acts like an alarm clock for me. It's good in the sense it does get me down to the coffee window before it shuts between 5-6:30am (a really stupid thing I intend to write to the hospital about). but it almost certainly guarantees a nap will be needed at some point during the day. I had better get used to this schedule for our two week IL-2 stay coming up in a couple months.

At least the coffee is good. The food here at Swedish is surprisingly good.

End of the day.

Blood infusions completed. She changed out of the hospital gown into cozy home yoga togs. They brought a cot in! I may sleep on something horizontal and in one piece for the first time in six nights The door to the room closes! This is feeling like a Four Seasons!

Yippee!!

Out of ICU! Up on the 12th Floor in a private room with a beautiful view to the east.

Neurologist says she is fine with discharge tomorrow and is writing up the prescriptions. So it will be in Kaplan's hands once he is satisfied with her vital signs. So bring on the red blood infusions!

One more day, but out of ICU

Kaplan was by at 6:10am. He ordered the transfer from ICU to an upstairs normal hospital room. Wants her here for one more day/night for couple reasons. Gives her a chance to be on all the anti-seizure and steroid medications orally instead of intravenously. Two, it gives him an opportunity to confer with the neurologist and make sure everyone is clear on the at home care plan and prescriptions. Three, she is low on red blood count so needs two pints of blood (which can be given either in ICU or normal room) which takes a couple hours to match, order up and then 2-4 hours per pint for infusion. They monitor every 15 minutes during blood infusion for reactions.

We will also get a visit from the neurologist this morning and the surgeon to check her back incision.

Last night was very tough emotionally for her. Getting unhooked by late afternoon will be great. It's always hard when your expectations are raised to get home and then you have to wait one more day. But being able to be mobile by later today will be great.

Last night in ICU?

Maybe, maybe. The weekend neurologist said no indication on the EEG of sub-clinical seizures over the last 24 hours. All signs point to the irritation around the original surgery site and inflammation, swelling and a tad bit of bleeding due to the Cyberknife radiation treatment. All of which can be controlled by the anti-seizure meds and steroids.

So we expect to get the thumbs up on a discharge tomorrow once we see Kaplan and our attending neurologist.

So one final night in ICU. One final night in my little nook in her room and bad recliner. She is doing much better too. Still fuzzy and forgetful but hopefully just side effects of the meds which will diminish b

EEG wires off!

Taking that as a good sign that they have enough data. Waiting for neurologist to visit and tell us what the story is. I hope they have med type and doses figured out. She is happy to be untethered!

And I'm going home soon for 3 hours to watch the game with the boys before returning for what I hope to be the last night for this go-round of our hospital stay.

Some good news

Our weekend doc, Dr West, came by and said the MRI on the right side showed nothing, according to the radiology neurologist guru. Definite evidence around the surgical and radiation sites but that was expected. So at least no new tumors.

Waiting for the neurologist to show and authorize getting her discontinued from the continuous EEG. Hopefully they have the anti-seizure dose and drug types down so she can prepare to get out of here. Doctor also authorized getting her disconnected from all the other tubes and wires and getting her up and moving. Basically setting stage for discharge tomorrow with a fistful of drugs.

Sunday morning update

The day breaks early for a cabana boy at the hospital. Even though we have a private room with sliding glass doors (that's reason enough to be at ICU at Swedish vs Harborview) the noises of the unit percolate through. Like the crazy person next door. Or alarms going off (vital stats out of range). Or the nurse coming in to roll Meagan to the other side. But I have also developed an internal alarm clock. By a quirk in scheduling between the all-night cafe window and the main cafeteria, there is an hour and a half to two hour gap between coffee availability. So I have to get to the internal cafe window by 5:00am or no coffee until 7:00am. Thus my internal instincts kick in and I'm up by 4:45. Given that I'm sleeping in my clothes there is no problem getting there in time.

Today we should get the results back from two things. She has been wired up to a continuous EEG all night and most of yesterday. They should be able to spot any issues and correlate it to medication and hopefully all seizure activity is under control. The neurologist will come by at some point and let us know findings and a medication game plan. We should also have definitive results on the MRI. It was sent to a specialist in radiology neurology. In any event she will have an MRI likely monthly for some time to come. We also put in a call to her surgeon and the on call doc was kind enough to come by and check her back incision from the tumor removal last Monday. It's been under a lot of stress because she has been on her back so much and needed some care.

It's a beautiful sunrise. Let's hope that bodes well for the day ahead.

Another round of continuous EEG

She is getting set up for another round of continuous EEG monitoring which usually means overnight. Goal is to assess brain wave patterns and any sub-clinical seizures. I suspect they are doing this to evaluate existing anti-seizure medication efficacy as well as trying to figure out the right brain activity if there is no discernible tumor. It's a messy process involving gluing electrodes all over her head with stuff that stinks of pure alcohol, them wrapping her head in gauze and putting a gauze sleeve over the 30 something wires running from the electrodes to the computer.

Expect a neurologist visit later.

Good article for dealing with anyone ill.

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?ref=style

Saturday morning preliminary

We got a visit from Dr West who is Kaplan's partner and our weekend oncology doc. He took a look at the MRI from last night and didn't see any obvious tumors on the right side. He's deferring judgment though to the radiologist evaluation, which is still pending and a little more fine grain. But certainly encouraging news. We await the visit from the neurology weekend doc to undestand what they want to do over the weekend in terms of tests and doses and med types.

The goal of the nurses is to get her up and moving around.

Nick
206.920.7364

Friday evening update.

We are definitely here to at least Monday. Kaplan stopped by at 8:15 to check in and let us know a little the plan. He walked in unseen by us while I was giving her a pep talk, of which he approved. She has been pretty emotional today, a fair bit of crying, probably due mostly to the mini seizures she is experiencing in her right brain and the anti-seizure medication.

At 9:20 they finally arrived to take her for her MRI. Should be about an hour. No results until tomorrow. At some point Kaplan's partner who is the weekend doc will come and tell us results. We are expecting a tumor, which we hope is simply zappable by the Cyberknife radiation treatment. If there is no tumor, I don't know what they will suggest.

The rest of the weekend is then about getting the anti-seizure meds right. The neurologist will probably order the short EEG Saturday to see if the mini seizures are abating. If not, they change up the cocktail. So it's test, adjust, test again. When it's right we will be able to go home.

And schedule the Cyberknife treatment for the new tumor if that's what it is.

She is pretty sick of being here and lying flat. We hope her blood pressure is up enough that she will be able to be slightly more mobile over the weekend. She is anxious to get home to her boys, house and dogs.

Friday morning update

Neurologist was by. She confirmed based on overnight continuous brain scans that she is having mini seizures emanating from right side of brain, which is not where her original tumors and surgery and radiation were. An MRI might reveal a small tumor. That can be zapped by radiation cyberknife. In the interim, they need to get her seizures and blood pressure under control. So she will be here for a longer time until Kaplan is sure she can get up and around, which is more the blood pressure issue. The neurologist says she has lots of patients at home on many antiseizure meds. So she's pretty confident they can get those under control. Then if it is a tumor we schedule cyberknife zappage. Meagan knows all this and is ok. So we are waiting for our turn in the MRI room.

Thursday evening update

Her condition is a little more serious than expected after the seizures. Its not just recovery She apparently is having subtle continuous mini seizures. They have her wired up for an all night observation of her brain waves. In earlier shorter EEG tests they saw some seizure activity. She also is showing evidence of brain irritation on the right side which is not the site of her brain surgery. They want to do an MRI but are trying to figure out how to reduce her seizure meds (she is on heavy doses) to reduce the impact on her kidneys (so they can do MRI with contrast) and without causing a seizure. Plus her blood pressure is too low, despite medicine to bump it up. So a lot going on, not much good. She is unaware as of yet, as we don't want to worry her until they have the data. She has been very emotional today, probably due to medication. So we have been telling her they simply need more info about her brain waves to get the right meds and doses. She is fairly confused in general.

It could be that the right side irritation is another small tumor. Or brain wiring is just running amok for a long time and she will need more monitoring until they are sure she is stable before release Probably not going home tomorrow.

So disconcerting. Kaplan isn't sure what is going on nor is her neurologist. So they are digging for more data (thus the overnight brainwave evaluation) and want to get an MRI but have to get her weaned off some meds for that to happen.

Aside from all that she is ok. A little irritable. A lot emotional. Resting now and hopefully will sleep well tonight.

Good report 6:45am

She is awake and talking; doesn't remember much beyond getting into the car to come to the hospital. Probably out of ICU today and into normal room for another day of observation. Still on lots of anti seizure meds and meds to keep her blood pressure up. Kaplan came by at 6:30 this morning to check her. She will go on oral meds today and will be on anti seizure meds forever She's a bit fuzzy but remembers people and events. Time and passing of time are illusive comcepts But cognitively seems good and improving.

I keep telling her this is not about the cancer but a side effect of the surgery and brain radiation. I predict a slow recovery day today but complete recovery. And ready to carry on the melanoma battle when it's time.

Of course she keeps saying she's sorry for putting us through this.

Meagan is at Swedish in ICU

She is on a lot of anti-seizure medication. She has been seen by neurologist and her oncologist. Her blood pressure is quite low, possibly due to medication. So they are pumping her full of saline and if that doesn't work they will try some meds to up her pressure. 57/32 is low by any standard, she is normally mid 80/ mid 60.

She is mostly out. Sort of sleeping, unconscious. She has been able to be responsive. When her dad came by we shook her and she opened her eyes and after a bit said, "hi dad" before conking out again.

The neurologist will come by again in the morning. She said there is evidence of brain irritation at the surgery and radiation areas based on EEG and possibly continual small seizures. If it's not better in the morning they will get more aggressive. No new tumors. It was not a stroke. It means she will have to be on anti-seizure meds forever.

Hoping that she sleeps and recovers overnight. I'm by her side. The recliner here at Swedish is not nearly as good as the one at Harborview. The boys are at home, it's rough on them.

Meagan has had a seizure

We are at Swedish Hospital ICU. She is heavily medicated and unconscious. CT scan showed no bleeding in brain. No idea of timeframe to awakening or impact to brain. Neurology team and Kaplan are all over it. But nothing to do for moment but wait.

Surgery complete

Our bad ass girl proved once aagIn how tough she is. "just a bee sting" does not quite describe what she had to go through. Even though she gets numbed up enough eventually, there are still moments where the pain shoots up and while the surgeon is quick to add more anesthetic, it's still uncomfortable.

She walked out with two, four inch scars on front and back, leaving behind plenty of flesh and tumor. Surgeon took a lot so he could get plenty of margin. She will be sore for sure for several days. Ibuprofen and ice should help.

We had to skip our appointment with Kaplan in order to make the surgery and reschedule after waiting an hour past our appointment time. Just shows even if you think you've built in enough slack time when it comes to cancer appointments, the office will have an extraordinarily busy day. So no more trying to schedule two appointments in one day.

Now, off to make her as comfortable as possible.

Surgery Day, Again...

Meagan has surgery to remove a couple skin tumors this afternoon. It sounds sorta easy but it's not that easy. They use local anesthetic but that still means she has to put up with a couple nasty shots on each side before it kicks in. She will end up with 3-4 inch scars on her tummy and back. You'll probably not see her in a two piece bathing suit this summer, not that you would have anyway, hahaha.

She's still a bit fuzzy mentally and I'm not sure whether it's related to the steroids she is taking for brain inflammation or the result of the brain radiation itself, which did have to go into some healthy tissue to assure getting all the cancer. It makes her a bit frustrated and she's not able to do much in the way of usual household tasks, and forgets where things are, like where we keep cereal bowls. But she works it out and I am happy to help while her brain recovers. She spent most of the day reading yesterday, which is good as I think that helps her recover more quickly.

We see Dr. Kaplan first, to have him check out a few suspicious things. It may be that he schedules her for a CT scan later this week, as we also are scheduled to see him next Tuesday.

People have been sending me articles that appeared recently in some of the major new publications, mostly about two announcements made at a recent melanoma conference. Regrettably, the one drug they announced, which is really great news for about 50% of melanoma patients, does not work for Meagan as she does not have the mutation (B-RAF) they are targeting. The other, Yervoy (formerly Ipillimumab), is one she was on and it did not work for her. Both are major breakthroughs, one because it is using genetic profiling as a way of targeting cancer treatment (which is the wave of the future) and Yervoy uses the body's own immune system to attack the cancer.

We do know she has one mutation, HLA-2, which is being used as a pathway for melanoma targeting and treatment in a variety of clinical trials. That was the trial we were headed to in Bethesda at the National Cancer Institute, before the discovery of the brain tumors, stroke, surgery and radiation treatment. That is still a potential option for her. But they require one to be free of brain tumors for 90 days. She has been without any attempt at effective treatment for so long that she really can't wait and do nothing. That's why the game plan is to try to get her to be able to get on the Interleukin-2, an approved FDA immune system treatment (but a brute force one, not targeting any specific mutation) ASAP - which Kaplan says will be in about 7 weeks - because the brain needs to be healed before you can start that treatment. If she does that treatment and she is one of the 5% responders - that would be obviously fantastic. If not, and her brain MRI is clear 90 days from essentially today (and she would have already completed the IL-2 treatment), she would be eligible for the clinical trial back that which targets that HLA-2 mutation. So we have a couple treatment options ahead, now that her head is cleared.

No U2

The effects of the brain radiation are a bit too much. Besides feeling a little fuzzy, her head hurts some and is irritated. So a quiet evening at home. The steroids should help, she's on a full three a day course with the taper starting Monday. Her side effects aren't unexpected, but the crowd and noise would have been too much. The fuzziness should diminish as her brain has proven capable of rewiring quickly.

But I would have liked to go to the concert.

The Four Things That Matter Most

I'm reading a short book with the title, "The Four Things That Matter Most", by Ira Byock, M.D.

The Four Things are words one should say, really at any time within our life, to anyone we care about:

Please forgive me
I forgive you
Thank you
I love you

There is a short passage in it that really struck me, so much so I thought I'd share it:

"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".

From Cyberknife to Realknife

Last brain radiation treatment completed. In a month, Meagan will have a followup brain MRI and they will see how they did.

But onward!

Monday she is scheduled to see Dr Kaplan and then we head two floors up at 2:30 to Dr Hanson, the surgeon, where she will have her stomach and back skin level tumors removed. It's done with local anesthetic and will take about an hour. More scars for our bad ass woman! She will just be on ibuprofen for a day or so afterwards.

So, hopefully we can have a nice relaxing weekend. Would be great if the sun came out as forecast as we got nosebleed seats for the U2 concert at Qwest Field on Saturday night. U2 is one of her favorite all time bands.

Last Day of Cyberknife

Here for her final brain radiation treatment. Everything looks good in terms of the treatment. No ill effects to speak of. They had to up the dose of steroids but that is not uncommon, she was on a very low dose. She was getting headaches but that has subsided now that she's getting a good amount. She will start tapering off them starting Monday, will probably take a week or so.

We also have a consult visit with her surgeon this morning about taking out the tumors on her back and stomach. They've been there a while and have gotten irritating enough that they should go, and Kaplan concurred. not sure when that will happen but hopefully just an in office procedure of low impact.

The best news of all is that tomorrow she is going to get her hair color restored to its "natural" auburn red color, hahaha.

If Cancer is an Earthquake

There are going to be tsunamis. I've had to deal with a number of tsunamis over the last couple months and their effects. It makes it pretty hard to be managing the earthquake zone plus the remote sites ravaged by the tsunami. This is all in code of course. Meagan represents the earthquake and zone of immediate impact and where a tremendous amount of energy goes to supporting recovery and rebuilding and thinking about and preparing for aftershocks. But there are the impact zones of the tsunami. And they take more or less attention, focus and support depending on unique circumstances. So at the moment I am stretched a bit thin.