Meagan

   

The End. The Final Post.

It's a fitting day to conclude this blog, which chronicled our journey in 2011.

I do plan on writing a book, using a lot of the content from this blog. Look for it in 2012.

Thanks to all for the kind words, love, and support.

And most of all, thank you to Meagan, who was every bit as genuine, loving, warm, and supportive in private as she was in public. She was a wonderful wife, an amazing mother, a best friend, and as good a woman as you'll ever find.

With Deep Appreciation

There are a number of people working very hard to create a wonderful celebration for Meagan tomorrow. I am thankful they are in our lives and have been so willing to do this. They are just remarkable.

This "party" (to Meagan's way of thinking) is likely to be quite memorable.

Separately, and in response to a number of inquiries - the boys and I are doing ok. It's still a shock, even though we knew it was coming. As time goes by I realize more and more how intense the situation was over the last couple months (certainly over the last eight since her stroke). With the weight lifted, I can now recall the events and feelings and see how difficult it really was, for her and for us. It was a helluva battle.

I'm also hit by waves of grief and sadness. I was reviewing the program a couple of times several days ago and it includes a photo of her which I provided - so it was not new to me. And yet, just seeing it and reading the words connected to it in the program just made my knees buckle. I have spent many periods of time over the last week in thought and reflection - some happy, some quite sad. All normal I suppose, but new for me.

I have been able to start catching up on some sleep. So I'm starting to feel somewhat human again.

The MacPhee boys all got tattoos the early part of last year. Mine is on my right calf, Casey's is on his right ribs, and Riley's is on his forearm. (We got Meagan a medallion with the image of it to wear on a chain around her neck, which she did). It is of the MacPhee Scottish clan crest and includes a family motto which we came up with. It proved pretty prescient. It is in Latin - "Salus in Arduis", which translates as "a stronghold in difficulty". Our nuclear family really pulled together over this last 18 months to support Meagan through this difficult and, ultimately final journey. Now we are to be tested further as we say goodbye to Meagan with a grand celebration and embark on our new lives without her. We have each other, and we will maintain our stronghold for each other. But most importantly, we recognize we are not doing it alone. Our stronghold is the best one could hope for, because it is not just the three of us with the tattoos, but is constituted by our "created family" of friends and loved ones. We could not be more fortunate.

One tiny bright spot

We've had such a rugged couple years that it is with a great deal of relief, happiness, and appreciation that I'm pleased as punch to announce that our son Casey was just accepted to the University of Washington as a transfer student starting Winter quarter. This is a huge deal for our family and provides him a wonderful platform to continue to grow, surrounded by loving and caring friends and family.

Meagan's Causes

For those that need help in figuring out how to make a contribution in Meagan's name to her favorite causes - here are some links...

University of Washington Libraries - specify Special Collections, Rare Books
https://www.washington.edu/giving/make-a-gift?source_typ=2&source=EJF

Rainier Scholars
https://app.etapestry.com/hosted/RainierScholars/OnlineDonation.html

Swedish Foundation
when you fill in amount, there is a fill in box that you can specify Henry Kaplan Research Fund
https://community.swedish.org/SSLPage.aspx?pid=316

Venue Announcement

I'm so pleased a suitable venue has been found to celebrate Meagan's life. Many thanks to the muses and faeries who have worked hard to line this up and who are planning the program. 

A celebration of the life of Meagan MacPhee will take place this Friday, December 2nd at 6 PM.  

The memorial will be held in the Great Hall at Green Lake located at 7220 Woodlawn Avenue NE, Seattle.

Food and drink to follow.

Carpooling is encouraged.  There are a few small pay lots close by but you may need to park in the neighborhood and walk to the Hall.

No gifts or flowers, please. Donations in Meagan's name may be made to her favorite causes: the University of Washington Special Collections Library, Rainier Scholars, and The Dr. Henry Kaplan Research Fund at the Swedish Hospital Foundation.

Somber attire is not permitted! We encourage you to be colorful!

Final Life Celebration Arrangements Being Made

Hope to announce later today the details of the celebration. Still planning on this Friday December 2nd,  late afternoon here in Seattle. Many thanks to all our friends working on this.

Meagan's Official Obituary - Seattle Times November 27, 2011

http://www.legacy.com/obituaries/seattletimes/obituary.aspx?n=meagan-macphee&pid=154756812

Meagan at Decatur Island Farmer's Market

Status Update - Celebration of Meagan's Life

Tentative plans are for her celebration to be a week from today - Friday Dec. 2. Still trying to lock down a venue (difficult during the holiday season). Her obituary will be published this Sunday in the Seattle Times.

Written Tribute

Stacie Foster has offered the following:

Meagan was a woman who cherished words, and I'd like to honor that side of her.   Please send me an e-mail of a memory, a favorite quote or poem or reading, or something else in written tribute to Meagan.  Put your name at the bottom.  I'll print them and make a simple book for Nick and the boys.  Please do this by December 1, and send your emails to : sfoster@invictalaw.com with the subject line "MEAGAN".  Thank you!

With thanks to a dear friend...

Tom Lennon has kindly offered to scan photos and provide technical support for the making of a Meagan Celebration slide show. We are asking our community to share your good/favorite photos of Meagan. 

If you have digital photos, please send them to: 
tom@lennonkeegan.com 

If you have hard copy photos, please send them to: 
Tom Lennon 
712 16th Ave E, Seattle, 98112. 

Label everything so photos can be returned to you. If you have questions or need technical help, you may call Tom at (206) 406-4715. 

Tentative Plan

We are thinking a celebration of Meagan's life around December 3rd. That will give us some time to grieve, to sleep, and to plan. Clearly a lot of sparkles have to be involved in any celebration. The boys and I will be talking about this today and it's important that they are a part of the entire process. But I don't think I am overstepping my bounds by giving everyone a heads-up as we have discussed this a bit. We are also planning on getting out of Dodge directly afterward for a week for a private R&R vacation. It has been a long haul for us, and we are all pretty burned out.

I'll use this blog to close out this final chapter, now that I am an unemployed cabana boy. So stay tuned for announcements and info. Again, my thanks to all for your support.

Thank you

Thank you for all the expressions of love and support. We'd like a day to just chill and the three of us to just be together. We've had so many visitors over the last two weeks since her last hospital stay that we've not had any uninterrupted time. We want to be in the moment and reflect on our beautiful Meagan. So tomorrow, Tuesday the 22nd, we'd appreciate some space. It's a guy thing, needing our cave. Thank you for your understanding.

She died exactly the way she wanted

Surrounded by family, dogs, a warm fire, and Johnny Mathis singing. Very peaceful. She just slipped away. The boys and I were grateful, if profoundly sad, witnesses.

Meagan MacPhee - R.I.P.

January 23, 1961 - November 21, 2011

Probably tonight

Her breathing has changed dramatically. Long periods of silence in between a series of deep breaths. Evidencing end of life symptoms. Likely hours, but mileage may vary.

Restless afternoon

She's been restless and agitated this afternoon, so I've been giving her medications hourly in escalating amounts to find a combo that calms her. Very similar to Saturday night. Hospice nurse visited before noon and walked me through what to expect and how best to comfort her. The human body really fights as long as it can. I think we are doing everything we can - I have good aides and she has had constant attention. It's interesting how, despite her unconscious condition, she will respond to someone talking to her. My amazing sister Molly was talking to her about a variety of things and telling her how she was going to take care of me and the boys and Meagan responded with a little smile.

Sleeping quietly

She was attended to throughout the night by a wonderful aide, Miriam. I have been so fortunate to get just amazing people to help me take care of Meagan through a firm called Andelcare. I am so impressed by the quality of the people as well as their warmth, kindness and caring.

Meagan continues to sleep peacefully. Miriam said she was active at various times, not awake but moving her arms and legs and murmuring. She has her preferences and expresses them - she does not want to lay on her right side.

I was able to sleep for about six hours. I feel amazingly more human-like this morning. An aide, Linda, will be here to help me today.

A quiet Sunday

She's slept all day. I have a great aide today and we've been able to keep her comfortable and with necessary meds. I have an aide coming all night tonight, they will help me get her medicated and cleaned up and then watch her all night while I sleep. I'll be on standby for med administration and support.

We aren't sure whether her sleeping today is a reaction to the stress of yesterday or the transition to a new phase. She's had no food or water and I don't expect her to have any more. So it may be this is the final stage. But she is peaceful and comfortable and surrounded by her loved ones.

Worst night yet

There is nothing "lovely" about dying. After the trauma of her overfilled bladder and insertion of the catheter, she was resting reasonably and I thought we'd have an ok evening. The cancer and body shut down process dictated otherwise. She became very agitated. It also seemed as if she was in pain, and she could have been although she can't communicate where. I spent almost the entire evening up until about 1:30am working with the hospice nurses over the phone to figure out how to relieve the agitation and pain, and more importantly how to deliver it. Using trial and error, we finally hit a med combo that worked and she has been sleeping since about 2am. I dropped off to sleep on the couch for a couple hours.

I've learned a couple things. One, she will not tolerate the alternate delivery route. I need to find meds that can be delivered via IV or orally dissolved. She is still surprisingly strong and resistant. So secondarily, I need to have a helper 24x7. I'm strong, but I cannot maneuver her on her bed alone nor take care of keeping her clean. Any resistance is not futile, it works. At least against one person. She also has pain when moved so it needs to be a team effort. Thirdly, we need to change her anti-seizure meds. She went without last night and this morning. Trying to make that happen on a Sunday will be a challenge. But hospice is working on it.

So, here's plan. I'm letting her sleep some before giving her the easy meds (delivered through a gel rubbed into skin). I'll give her anti-nausea meds through her port. If there is pain, I'll add morphine. If she's agitated, I'll add Haldol, which worked last night when crushed and mixed with a little water. They are going to get me more of these either delivered or to be picked up. When my aide gets here at 8am we will get her cleaned up. I'll then call the service and have them arrange someone here 8pm to 8am so I have coverage 22x7, giving us a couple hours in the evening of private time. Lastly we will get her on a substitute anti-seizure med, likely phenobarbital, which will also have some sedative properties helping her agitation.

A verrrry stressful evening. Hoping for a nap this morning.

Again, a rough afternoon

sleeping fairly peacefully now - in her gesticulating, talking out loud kind of way. But earlier things were a little harried. She started experiencing a lot of pain and it turned out to be her bladder - beyond full. Fortunately I was able to get morphine and anti-nausea meds into her and the hospice nurse got here in 20 minutes and put a catheter in, and she is now much more comfortable. At first I was concerned it was her spinal tumors, and not looking forward to having her doped up. With any luck the pain is gone and she can get back to her regular routine.

Which for me is now about managing her while she is in bed. Good news - no more lifting in and out of wheelchair and to and out of bed and toilet. Bad news - just like taking care of an infant again. Plus I still have the problem of getting her anti-seizure meds into her.

Busy morning.

Lot of effort this morning. Thanks to home aide it worked out. Got her cleaned, medicated and transported to the family room. She's all set up exactly the way she wanted it - bed by the fire, dogs by her side, surrounded by loved ones. She won't be getting out of bed again. We will tend to her there. She's mostly not present, sometimes aware. She seems comfortable.

The bedroom now is strangely empty.

Still coughing...

After noon yesterday she took a left turn and visited a brane world that hovers slightly above our dimension, close enough to participate in ours a bit, but clearly different. She has many conversations with people we can't see. She is quite active, gesturing and waving her arms about. Her posture took a noticeable change, slumping more and her head is canted to the left. It has to be uncomfortable, so today we are going to move the bed into the family room so she can participate to whatever extent she is able, but be able to lie in relative comfort, with the head of the bed elevated. It's the way she wanted it. She took no food and almost no water yesterday. I tried to get her to take little sips of water so she could take her pills orally but was unsuccessful. So we have to go to the alternate delivery route. She is coughing quite a bit - the nurse gave us some medication that we could use but it causes extreme dry mouth and I would just as soon not go that route. I gave her some additional meds at 2am and 3am that helped a bit - at 6am she gets her normal dose and we will see how that goes. I do like being able to give her the main three meds via the cream - that is a great advance. She is not getting her pain meds, although that does not seem to be an issue - if need be I can go to oral drops of morphine at a very low dose and counter the nausea with IV delivery of compazine.

The hospice nurse gave the boys and me a very good overview of the dying process and what to expect. They each asked questions of her. The nurse has no idea how long it will take with Meagan, barring some major event like a stroke. It could be anywhere from 2-8 days - she is relatively young and healthy despite the cancer. It is hard to wake each day and realize that based on an assessment of her condition, she is likely to be around another 24 hours. Because she is there, but not there. And so as a coping mechanism, you necessarily adapt. As one of them said, 'Dad, I feel numb, just like you said". It's true - it's not that there is not love and care and depth of feeling for Meagan. It's that the Meagan we know is gone, except for the shell of a body and a small flicker of spirit. So what we are left with is a physical body to tend, without reciprocal acknowledgment or recognition or connection. It makes it a challenge, because you want to remember all the fantastic things - not the last days of delusional and disconnected sound and movement by a physical entity that is not what you associate with your mom or your wife.

I don't buy into the notion that there are great lessons to be learned by this slow dying process or that it is a gift in some way. We have said our goodbyes, we have our good memories and her life lessons emblazoned into our hearts and minds, and we can carry forward the legacy of her spirit (in a non-religious sense) and joi de vivre. I'd rather it end sooner than later so we have the energy and positive associations of her final days to go forward. I know we don't have a choice in the matter - but if I had a wish at this point that would be it.

Like a Boy Scout - always prepared

Except a boy scout in an alternate universe of non-discrimination...

Thanks to the visit by the hospice nurse and delivery of more medications I now feel able to better support Meagan on her final journey with medications to ease distress. In addition to a lotion which delivers three meds (sparing her having to swallow them), her anti-seizure and pain meds, I have on hand seven others as needed I know how to deliver and for what purpose. Hopefully these will keep her cough and anxiety at bay, pain and seizures away, and nausea and spasms (insert here word that means "reduced or minimized", that rhymes and completes the triad)

Ativan to the rescue

A little lorazepam seems to have reduced the cough and stress. She's been somewhat alert since taking it. She's getting a full bedbath and change now. Nurse at noonish.

Please, no more...

Food (other than what is scheduled - we are only three and are full up)
Candy or chocolate
Pastries (I know it is food but it deserves separate mention)
Flowers (out of vases, places)
Plants (hard enough keeping our existing ones going)
Knickknacks (Meagan is queen of them already)

We sincerely appreciate the gestures and well wishes. We don't need you to bring or send anything In lieu of the above, if you feel compelled, you could bring or send the following.

Beer.

Good beer. Boutique stuff. The boys drink it, I do not drink alcohol.

Awful morning

She is coughing a lot. It's very distressing for her and me. Her lungs are full of fluid but her body can't absorb and process it away. I gave her a bunch of medical marijuana to calm her and have a call into the hospice nurse. I think we will need to step up something to give her mental relief.

Quiet moments

This morning I gave her the steroids and anti-nausea meds via IV and her port. It takes about 5 minutes to push the anti-nausea meds through the IV line. This is after all the prep and sanitizing - harder this morning because I did it before coffee. I was kneeling by the bed in the sem-lit room, with Meagan sleeping, slowly pushing the syringe and looking at her. The house is dark and quiet. It's at these moments when I realize several things. One, how much she is dependent on me during her final days for her comfort and safety. She has had to give up her self-control and dignity, trusting in me to do what it right by her. Sure, I could hire a third party to sit in a separate room with her, and attend to her needs while I sleep. But when she wakes up, scared and disoriented, she wants to see her "honey" and be reassured and tended to by a loved one, not a stranger. I am rewarded each time I lift her out of her bed or wheelchair to move her by a kiss on the cheek and a murmured "thank you". (I choose not to dwell on the times she rolls her eyes at me or gives me a dismissive wave when I try to get her to take some medication).

I also realize that inside this sick body is an amazing woman - with plenty of internal fire and spirit still there. How she must hate having someone else to have to attend to her needs. This has always been a fiercely independent woman, who wanted to be able to handle everything herself.

But most importantly - it's at moments like this when I can really reflect on this woman and how much she means to me. Hospice is great, but in some ways it is like a machine which moves into your house. Because they are teaching you how to handle administration of medications and attend to her every need, it ends up feeling like you are a cog in the machine, and end up focused on the details of care. At least in the hospital the nurses and doctors handled everything - with my role in that arena limited to oversight and quality control. But it did free me up to just focus on her and our relationship.

It is only in the quiet moments now, without visitors or aides or visiting nurses and social workers that I can just look at her and recall what she is and was for me for 25 years. Yes, she looks a lot different. She's not there mentally and her physical condition is quite fragile. It is not a reciprocal relationship nor has it been one since her stroke. She won't be here much longer, and then all it will be are memories and images of her. But right now, in the quiet moment, she is in front of me, breathing softly, and I can see her and hold her and reflect on everything we have meant to each other. She is beautiful.

Still with us

A difficult night. Up at 2:30 to get her to the bathroom. She coughed quite a bit during the course of the night which sets off nausea. So I'm attending to that. Plus the usual assortments of responding to calls for help that turn out to be nothing. Got her IV meds in first thing at 6am. She won't take her oral medications.

The hospice nurse is here today, with some substitute meds which should make it much easier and better for Meagan. Nothing they can do for the cough though. Plus the home care aide from Providence will be here to bathe her. They also shipped here yesterday a five medicine pack of end of life drugs if necessary (morphine, etc.), as well as Valium for her if she has seizures. I have a larger than expected pharmacy in the house.

I didn't see the Valium pack for me....

Nice story from a friend who visited her today

Courtesy of Terri F.

Spent good time with our girl this afternoon. She is getting ready to make her transition. I asked her, "Have you been over there, seen it?" She said, "Yes, yes, I have." I said, "Is it beautiful?" She said, "Well. . . it's okay. It's not beautiful enough for me yet. So I'm waiting." I told her that when she arrived it would naturally become more beautiful, because she'd be there with her colors and sparkles. "You ARE going to bring your sparkles, right? You want it to be sparkly?" "Yes, yes, of course." I asked her what colors she was taking with her. Without hesitation, she said, "Magenta!" If that's not our Meagan, I don't know what is! 

We sang "Over the Rainbow," one of her favorites, and then she broke out into something I really couldn't recognize. She was kind of "dancing," moving her head back/forth, moving her arms from side to side. I said, "Honey, I don't know that one. What is it, again?" She went through it again and it was I Got You Babe. "Sonny and Cher," she said. I asked her if she was Cher. She said "Yes, yes." Lots of smiles and sparkles in her eyes. 

There were times, very often, when she is clearly communicating with people not in the room. I said, "Honey, are you talking to people I can't see?" She said, "Yes, I am." I said, "Well, who are they? I need to know who you're talking to." She said, "I don't know who they are. I don't know." Then I said, "Well, are they nice?" Her response, "Oh, YES, they are VERY nice." 

So what do we know from this visit? 1: She's getting ready to make her move, but she's waiting for the contractors to make it more beautiful prior to her arrival. 2: She secretly wants to be Cher. 3: She is already meeting new friends.

All of these things are good. Very good. Although, I gotta tell ya, I've known her for 36 years and had NO IDEA about the Cher thing. . . :-)

Resilience at end of life

The human body is pretty amazing. Even though she is slowly shutting down, she still retains an ability to rally. This morning she has been in her favorite chair and in and out of sleep. When awake she is looking around and seems to recognize us and responds to simple questions (do you need a drink?, do you need a tissue?). At the same time, one gets the sense she is seeing different things than we do. She can't converse - she says things that don't make sense. She was able to swallow her important meds - a relief for me...

She is smiling a lot - even when she is talking in her sleep. She still retains some charm and wit even though it is limited. And she definitely retains her "wife" characteristics. I have witnesses. I asked her if she needed to use the bathroom. She rolled her eyes at me. That got a big laugh.

She is Failing Fast

It is hard to believe she will last much longer. The cancer is progressing rapidly and her body is shutting down equally as fast. Yesterday afternoon she seemed to take a step down. She was out of it most of the afternoon and evening. I couldn't rouse her for visitors. She also would not drink anything, or swallow. That is a problem in terms of pill delivery. Fortunately, for two important drugs, I could administer them through her port access IV line. The other I had to administer in an alternate way. Hopefully, the hospice nurse will have the others she needs in different forms - i.e. a cream or IV push.

She is pretty delusional and even with her eyes open does not appear to be viewing the same things we see. It's disconcerting and rough on the boys. Last night I had no med delivery duties between 10pm and 6am. So I had a block of time in which I could have slept, in theory. However she was quite vocal and active, so it's hard not react and as a result I didn't get much sleep.

It is entirely surreal to sit and wait for your wife to die. Equally so to watch your mom die. She is already pretty far gone, and there were times I was convinced she wouldn't draw that next breath, and was hoping for it. Because I hate to see her suffer, whether it is her coughing fits or wave of vertigo. Since there is no cure or recovery, and she has suffered quite enough, it seems a kindness to have it end sooner rather than later. We have all said our goodbyes and I told her yesterday several times it was ok for her to go, that the boys and I would be ok, and that we would be carrying her in our hearts forever. It would be a wonder if she had a moment of clarity before she goes, and create a certain bit of final closure for me, and for the boys. It's unlikely, so I am glad we did it earlier when she had more capacity.

A Meagan Story

A dear friend shared this story about Meagan, which she was kind enough to allow me to post. 

"Dear Nick,

I know I'm preaching to the choir when I tell you what a precious and loving and lovable (and wildly and innocently funny) woman you have been married to all these wonderful years.  She has set the bar way too incredibly high for any of us to ever reach.  Reading your blog post about the social worker discussing death with Meagan reminded me that I'd not yet shared a priceless story from the day I visited her in the hospital. 

The chaplain (a woman) came in and asked Meagan if she wanted to talk about being terminally ill (apparently earlier in the week a trainee chaplain had been in and Meagan had not felt the need to talk about it to him either).  Well, Meagan said no, she didn't really need to talk to her, but that if her assistant needed some practice he could surely come back and visit.  The chaplain said no, he didn't need to practice on her, but that she would love to have Meagan open up and discuss how she was feeling about her impending death (not verbatim).  Meagan was thoughtful for a moment and then told the chaplain that she's well, not really religious, but she has lots of friends, 129 friends as a matter of fact, so the chaplain assured her it was about spirituality, not about religion, and the chaplain gave Meagan that "it's okay if you haven't been to church for a while look" to which Meagan replied, actually, well, I'm an atheist.  I really don't believe in any of that other stuff.  It took all I had not to crack up.  The chaplain thanked her for her time (she was a lovely woman) and left.  Anyway, when I was leaving the chaplain was in the hall by the elevator and she stopped me and said, you know, she may think she's an atheist but anyone who exudes that much love and has 129 friends that she's worried about while she's the one who is dying has no worry about where she's going when she leaves us.

What a gal, Nick.  What a very special gal."

Hospice Nurse to rescue

Had a great, long meeting with Debra, our main point of contact. She really swung into action. Besides getting all but one of her surgery staples out, she helped me develop a medication schedule. It means I can have about 7 hours between doses overnight. Plus she is trying to swap out medications for ones that last longer or have multiple benefits, and switch to IV, cream, or other delivery methods than swallowing.

She's not too concerned about her lungs, thinks it's a legacy of her hospital IV infusions. Her body just can't get rid of fluids as it's likely her liver and kidneys are starting to shut down. Her lessening of appetite and desire for fluids is also consistent with end of life symptoms. The nurse is just so competent and knowledgable - it's great to have her on the team.

There was a social worker who came along too. We talked some and then she stayed with Meagan while the nurse and I went to the living room to discuss medications. The woman came out after a while to get ready to leave but told us she had talked with Meagan about dying and asked if she had accepted it. Apparently Meagan told her something to the effect that yes, she had, and had already visited the other side, and it was beautiful. A comforting thought.

A new level of difficulty

To start with a spot of good news.....she is not coughing as badly at night, so there were no major disruptions caused by that issue. However she did try to get out of bed twice last night - once due to confusion and once to use the bathroom. Getting to the bathroom is not a simple process, and it's compounded by the fact that she usually needs to "go" right away. I was also up quite a bit due to her talking in her sleep and trying to discern a call for help from her random utterances. This is way worse than having newborns.

I did cheat last night and was able to get her midnight meds down orally, although I am now out of them and have to go with the IV push. She will get her 6am important meds via the IV. I'm also going to start her off with an "MJ laced" spot of chai tea. We are going to push that every couple hours just like regular medication - it does seem to help.

Even though I didn't get much sleep in the hospital, I did have some worry and concern alleviated by the nurses doing the medication administration - especially at night. Here I get it all - worry, concern, and lack of sleep.

midnight and 6am medication plan

Hospice was here today and got me all set up with being able to personally deliver intravenous medications. Hospice does not "do" anything. They train you. Because of her nausea we are now giving her steroids and one anti-nausea medication via IV push. It takes about 15 minutes to do it. There is a lot of sanitizing and careful prep involved. The benefit is she won't throw up these meds. The cost is my time and sleep. I also still have to try to get some meds down orally. It's not working too well today - so we may need to change over more to IV. Or suppository. She will not like that.....

And Mary Jane is at work too....

A first....and still funny

She was a bit more "with it" yesterday. After dozing most of the evening, she rallied to take her medication. I've been trying to get her cleaned up ever since we got back from the hospital but it hasn't worked out because of her vertigo, nausea and dizziness. She knew I've wanted to get her in the shower so she announced she was ready to do it. Casey was with me, and he helped get her in the wheelchair. I had stripped off shoes and socks and a shirt (she saw me do this), knowing I was going to get splashed. We had a new shower put in, with tile, a bench, and shower head that is a hand wand. I turned the shower on to get it warm before we put her in. Casey was rolling her toward the bathroom, and she couldn't see me. She heard the shower go on, and put her arms up across her face, closing her eyes and yelled out, "no, I don't want to see him peeing". Oh my gosh, Casey and I laughed out loud.

I did get her in, and got her rinsed off. Got most of the hair gel out from her surgery. We have decided not to shave the rest of her hair off for the moment - she wears a cap she purchased and she looks pretty cute with what hair she has peeking out.

She didn't like seeing the hospital bed in our bedroom - had a strong, visceral, negative response. I explained that we needed to keep her head and chest elevated and showed her where I was and tried to reassure her. She didn't protest long. I think she hears words ("hospice") and sees things (the hospital bed) that let her know these are end of days signals and even though she knows it intellectually (although forgets due to cognitive impairment), reacts viscerally.

She talks out loud in her sleep now - and it's pretty funny (that is, if you aren't trying to sleep) to hear the snippets of conversation. She had a difficult time when she woke up - lots of coughing which can generate some throwing up. Compounded with the vertigo. I got some medical cannabis in her, to try to ease that, since her nausea medications aren't due until 8am. Her eyes are much more noticeably not tracking together. She is more delirious this morning - I don't think from the side effects of the cannabis.  She continues to have the twitching and spasms which are indicative of brain cancer activity - a condition called myoclonus. She is already on the best drug available to moderate the symptoms - her anti-seizure medication.

We have a new caregiver today - the agency is trying to piece together a permanent rotation - from 8am to 6pm. The assigned nurse coordinator from hospice is here at 2pm.

Day One of the countdown

Meagan has been pretty nauseous today as a result of her cancer and its added impact on her eyes. She has double vision, which could be from the optic nerve being pressed, but also her eyes aren't tracking together. So every time she moves it's very disorienting and vertigo inducing. Imagine how stressful it would have been for her to try to go to a treatment. We've given her two rounds of medical cannabis and that seems to help, although makes her sleepy. So been a quiet day for her. She was much more lucid today - knew who everyone was around her and was engaging and could track conversations, although her voice is a very quiet whisper.

We were able to have a conversation this morning about declining further treatment and why, her prognosis and our goals, and timing (I told her we didn't know how long she would last but we would focus on each day one at a time). As before, she is sad, not scared. Very few tears, I would surmise because she is weary of the fight, knows it is at an end, and is ready for the conclusion. Wanted to know if boys knew (yes). And then she promptly forgot the conversation and moved on.

Lots of administrative hubub today - the hospital bed arrived (needed so she can sleep at an incline - her chest is quite congested). Arranged a caregiver aide for coverage seven days a week from 8am to 6pm. Arranged hospice. Had a visit with hospice transition nurse. Hope to get the medications nailed tomorrow. Got a baby monitor so when I am up and in the family room I can hear her rousing in the bedroom or trying to call me.

Last night I got about three hours sleep. I am hoping to improve on that tonight with her in the separate hospital bed.

Hospice Begins

Talked with Dr Kaplan this morning. We are in agreement. No good purpose is served by continuing treatment. I've engaged Providence Hospice - although around Meagan we are going to refer to it as home health care or visiting nurses. I've also got a firm which will provide an aide to help with medication management and personal care.

She's feeling nauseous this morning even though I loaded her up with steroids, and two anti-nausea meds. We will probably have to go to stronger doses and IV delivery.

It's hard to believe this is happening. Even though it feels right. I have no anxiety or stress about the decision. Kaplan said we've done everything feasible and further efforts would just lead to more suffering and poor life quality even if she eked out some more time. I concur. She did not want to be in pain (or nausea) at the end of her life. I have seen this amazing woman take so much abuse, pain, and mental insults that there comes a point where you move to acceptance and provide love, comfort, and support. So now our work is to get her as comfy as we can.

To what end..

Meagan's mental and physical condition has deteriorated pretty markedly. She only has rare moments of lucidity. The meds are keeping most of the pain and nausea at bay, although she has gotten ill a couple times. I've exchanged emails with Dr Kaplan about the potential benefits of whole brain radiation, relative to the risks and impacts. We are going to talk in the morning but he recommends we decline further treatment and engage hospice. Treatment is not likely going to be helpful and could impact the quality of her remaining life, which is already quite compromised. The boys and I concur. Hospice would focus on care and comfort for her remaining days. I'm planning on engaging more coverage to help manage her medical needs and insure her safety and support.

There is nothing good about this conclusion. It does feel right. It's also very sad.

I'll sleep on it and talk with the doctor in the morning.

A Stroke?

Based on her behavior, a friend suggested that perhaps she's had or having a stroke of some sort. It's definitely possible. It could just be the cancer in her brain, including the two tumors, pressing on important gray matter. But a stroke would also explain the twitching and spasms. She's on a lot of anti-seizure meds which would theoretically keep them at a low level.

I just know things are a lot different. I'm glad I have help starting today. Next goal is to get a hospital bed in here. Then to assess how the day goes, talk to Dr Kaplan and decide whether to try the whole brain radiation or go right to hospice. The boys are on board, they see her condition and it's very hard for them.

She has had a few lucid moments. Saying good night to both of them last night, she recognized then and told them each she loved them. That was lovely.

I don't know if this change is permanent...

But it's a huge loss. She just called me "Tim". She's really mentally completely out of it. It's so sad. I lost her as a partner when she had her stroke. There have been incremental changes since then, but there was always the essence. I likened it to a beautiful sand sculpture that is slowly being changed by a gentle rain. You still know what it is even though the sharp edges are gone.

This feels entirely different. It feels like I've lost "her".

Altered Reality

There has been a significant shift in her personality and outlook. I'm not sure what's driving it - the medications or the cancer of the brain. She's been on all these meds before without effect so my guess is the cancer. All joking aside it started before the medical cannabis and she's had none today, as her pain and nausea are under control thanks to the bumped dose of steroids and new anti-nausea meds. 

She talks about random things, can't carry a conversation, thinks other people are in room or substitutes others for you. Pretty much living in a different world or reality. She's comfortable and happy. But mentally she is somewhere else. 

It's hard for the boys and me. She is really not there. I'm glad I have help starting tomorrow. I'll have an aide here from 10-4 each day. 

The dangers of blogging about our journey

I've tried to "think out loud" and "show my feelings" throughout this whole journey. In part to let people who care deeply for Meagan and our family know about what's happening, in part to offer our experience so that when someone runs into a similar situation down the road they might be a bit wiser and lastly, as a way of getting emotional and actual support. I've been really gratified by the expressions of love and support, as well as offers and ideas. Sometimes it's hard to manage - well meaning people will send suggestions or ideas - and it's either premature, too hard for me to figure out how to deal with or I've got something in the works already. Sometimes it comes right as I'm dealing with Meagan in some fashion. Or it means priming the pump with her - getting someone into our home to help for example is a big issue. It's about acknowledging lack of independence, giving up some dignity to an outside person, reflecting the seriousness of where we stand, and figuring out what the person would actually do.

I'm not trying to be a martyr. I know I need help; the last post was my thought process and factors influencing it. I do have a friend who is going to run interference for me on this and help arrange a company to provide someone to assist me. Since the needs are going to change it's important to me that I have one source to go to to adjust as needed. I don't want to hire someone off craigslist and I want the firm to have all the appropriate insurance. So I don't need any more suggestions or advice on this particular issue.

Separately I will be talking to our friend Bobbie, who is managing the Meagan's Faeries help website, about scheduling people to come in late afternoon to sit with Meagan so I can get a little exercise.

Figuring out help

I've run into (another) situation that is new territory, and seems complex and challenging. I know I need to get some help to manage Meagan's situation. There are a number of needs:
1. Her needs for medication and nausea management
2. Her personal care needs
3. Her need for 24x7 monitoring
4. Support with dressing and transport to and from appointments
5. My needs for relief and sleep.

Meeting those needs is complicated by:
a. her desire for dignity and privacy
b. her lack of awareness of the seriousness of her condition and declining cognitive ability
c. her medical condition and lack of personal mobility
d. her need for bathroom support in the middle of the night
e. her talking in her sleep and movement - preventing me from sleeping
f. hospice inability to enter picture until treatment is complete (brain radiation)

That's only a partial list. The pre-hospice nurse told me to just focus one day at a time - but I can't help trying to project and figure out what I need and what she will accept. Given I am sleep deprived as heck this morning it tends to drive your thinking about solutions.

It probably makes the most sense in the interim to get an able bodied day aide who can help me get her dressed and to and from her appointments. Insurance won't pay for this, so it's an out of pocket expense, but one well worth it. The pre-hospice nurse seems committed to helping me figure out the medication stuff with Dr Kaplan. And I can always have her suck on some lollipops. Although I have to say, she was pretty wacko yesterday - her tolerance for THC is pretty low, hahahaha.

Mary Jane

I'm happy to report that the medical cannabis is working. She has reduced nausea and increased appetite. She has eaten a bit late this afternoon and been drinking some water and tea. Side effects?  Loopy as hell! Much more alert but jumpy. Says random things. Compulsive organizing behavior. A worthwhile trade-off? I think so. At one point 3-4 of us were hovering and encouraging her to eat and drink and she looked up and said, "what is this, an intervention?". Pretty funny. I do think we have some work to do on getting the right dose. She joined a medical cannabis co-op today and we will be getting some different products to try, and different doses. So a bit of experimenting - but what the heck.

Dr Kaplan also upped her dose of steroids so that should help nausea and appetite.

I also got a visit from pre-hospice services, a nurse and a coordinator. They were great. Will help me access services and navigate the system. I did learn one important thing, which is a bit disconcerting. Hospice will not get involved unless the patient is off all treatment, because of how they get paid by the heath insurance company.  Her upcoming brain radiation - if she can do it - is treatment, palliative and not curative, but still treatment. So while she is in treatment I can't get hospice support. So I'll have to figure out how to manage the meds and nausea with Dr Kaplan and the pre-hospice team.

The goal is to get through the weekend with her relatively stable and "comfy". And then Monday see if we can make the move to get cleaned up, dressed and off to treatment.

Sleep no better at home...

Such a difficult situation right now. She's eating and drinking very little. She has been able to keep her medications down. She has no ability to self care or move around, and when she does it makes her dizzy. She is also shaking like a leaf and can barely hold her cup. Getting her in and out of her wheelchair and in and out of the bathroom is a challenge. If she stays like this I can't imagine how difficult it is going to be to try to get her to her daily radiation treatment. Getting into some sort of outfit will be a major endeavor.

We are going to try a little something different this afternoon, thanks to a friend. A package of medical marijuana will arrive in the form of suckers and lollipops. If this works to help reduce nausea and stimulate appetite, then Dr Kaplan is fully on board with signing the authorization form so she can get it directly. I've never been so anxious to see the Fed Ex delivery truck.

To top it all off, she has major chest congestion and a lot of junk in her throat. Not sure if this is caused by the thrush or just due to low blood counts. I've got an email in to Kaplan about what to do for this. We had a 45 minute episode last night at 3am where she just kept coughing and coughing - and it makes her nausea worse. Sheesh...this gal cannot buy a break.

I exchanged some email last night with Dr Kaplan about getting her with hospice and he agrees. He is happy to get her onto IV medications at home and with the medical marijuana if that helps. He also said, "I think the goal should be that we make her comfy, I doubt we can do any better than that".

There's no place like...

The Hospital.

When it comes to medication and nausea management.

Rough day today. All she did was sit in her chair all day and nap. Not interested in communication or eating and drinking. Several bouts of nausea. Did get her some more prescription meds to work on nausea. Made no progress on getting her buzzed or cleaned up; she's been in her robe all day.

The rehab people came for an assessment today and after, said she was more a candidate for hospice than therapy. I meet with the hospice people tomorrow afternoon. The priority is to figure out how to manage her medical and personal needs with professional support. I've also got a call into our health insurance company to get a case manager. We know where this is heading so might as well get better support.

Very high stress level today.

A New Act

Home Sweet Home. The good news is I did get some sleep - the most in the last two weeks. I did wake up around 2 and 4 - but that may have been due more to hospital programming - I went back to sleep until 6. The bad news is I was awakened by Meagan telling me she was going to throw up.  What a way to start the day.

She's gone back to sleep - her nausea I suspect was due more to mucus and clogging up of her throat. She has thrush - which is very common when you've had chemo and steroids. As a result over the last several days she has lost her voice - can barely be heard - and her throat is sore and scratchy. She is due for a new scopolamine patch around noon today so I hope that with that and some tea and lozenges to clear her throat she will be ok in that department.

Physically she is very weak. She cannot stand on her own nor can she push herself up from the chair or toilet to get to her walker or wheelchair. She can use her walker but only go a little way. She is shaking continuously (a family trait magnified) and when she is sleeping or dozing she gets body spasms - a bit disconcerting. The new bathroom arrangement has worked really well. The only downside we need to address now is she has no place to look at herself in the mirror and do her make up, etc. That is the next phase of our project. Mentally she can carry on a conversation, although it can wander or what she says can be unrelated. She will ask questions or make comments that are not connected to the current conversation. I'd say this most recent event has caused another step down in cognition. She's eating fine, and used her computer some.

We have the physical therapy agency coming for an assessment at 11 today. They do an assessment and submit to the insurance company a plan, which will no doubt be approved. We went through the same thing after her stroke with this company. Someone will likely come in 3-4 times a week for an hour each time to work with her on strength and getting her to be able to stand.

Separately, I'm also looking for someone to come in for 2-3 hours 3-4 days per week. I've got an inquiry in to one agency. Meagan is not at all thrilled about this - she values her independence and doesn't like people in our home. So we had a discussion about it last night. It's very difficult for her - but I think she has acquiesced to the situation. I simply cannot be the full time caregiver when she requires so much more support. She needs someone with her all the time. It's been a long march and I'm pretty burned out, and with a very rugged journey ahead I need more help. It's not hospice support - yet. More like personal support and assistance - so I can get away for short periods of time. But I would like to find one person who can be with us all the way to the end. It's not a friend or relative either - she values her dignity and wants to be able to conduct her relationships on equal footing. So I'm thinking this person could help her schedule visits and hover in the background.

If any of you in the Seattle area know of someone who would be interested in this kind of work - please contact me.

Today we are going to buzz the rest of her hair off and get her cleaned up. She might be able to take a bath today, although she can't shower and get her head surgical site wet. She's going to pull out Audrey, her wig, again.

She starts brain radiation on Monday. She is scheduled for 20 treatments, which occur Monday-Friday. On Wednesday she will get the staples out of her head. And we need to schedule a visit with Dr. Kaplan for Tuesday or Thursday. Along with physical therapy that will be a busy week. So it will be nice to just hang at our home until then.

Home

Sitting in her chair by the fire, napping. Dog curled up at her feet. Walker and wheelchair tried and at the ready - she's got no personal mobility.

Meanwhile, I feel terrible and look even worse.  Ever been so tired you can't even sleep? I hope to solve that riddle tonight.

Discharge orders being written!

She gets to go home today. It will take a while for the whole thing to happen, but hopefully by mid-afternoon we will be out of here.

Possibly Home Today

Neurologist gave the thumbs up, subject to Kaplan's concurrence. Awaiting his visit this morning to discuss. She has a bit of a fever and her throat is sore and scratchy. Possibly an infection. There is still quite a bit to manage in terms of symptoms and medications and she needs to make the transition from IV drip to oral delivery. Definitely want to keep her on the scopolamine patch. Plus get her catheter out.

But assuming all that can be handled we are ready to get out of here. We will have a wheelchair and walker at home. The bathroom remodel is complete (thanks to our incredible contractor handyman - Ron). We will have to schedule her with the neurosurgeon to get her staples removed from her head next week, but they can be left in for a few radiation treatments, which start Monday.

I will not miss being at the hospital. It's a very lonely place. You can't really develop a relationship with anyone and the staff rotates so much you don't have consistency in your immediate care team. It's hard being away from our boys (and it's hard for them - it's one thing to uproot your life and move home, it's quite another to have an empty home to be in). It is also such a stark contrast to our home which is so warm, colorful and eclectic. Nothwithstanding their attempts at decor and art, the hospital is still an institutional, sterile (I'm not just talking "gel in, gel out"), and dehumanizing environment. I'm looking forward to sitting by our firestove with the dogs at our feet and watching the antics of our backyard fauna. Simple pleasures.

"Be like water my friend"

Casey sent me a Bruce Lee video clip of this title and topic. It applies to martial arts but life too. You need to be adaptive and flow.

Radiation therapy will NOT start today. Next Monday. Got a call from Vermeulen with Raisis in the room and they had just gotten off phone with Kaplan. The troika decided to give her surgical site time to heal. Even tho cancer could be causing the nausea; it's pretty much all over the place.

Slip Slidin' Away...

Not Meagan. Dr. Kaplan. I would never tell her this. He plays a valuable role for her beyond physician. And I could be wrong; it's just a hunch. But I'm a pretty good judge of human behavior. He appears to me to be more and more disinterested in Meagan. He's not abandoning her - but I believe he sees that the end is neigh, there is nothing more he can do treatment-wise (he said to me this morning, 'let's let the neurosurgeon and radiation oncologist work it out") and all that is left for him to do is provide palliative measures (basically pain meds). I think it's just human nature. And while he cares about her and will care for her at a basic level - since he's got nothing substantive left he can do for her - he's not going to give her full attention and the level of care we've seen in the past. Natural, normal, but another sign.

I think she is on...

For the start of whole brain radiation treatment today, at 2:30pm. But the scramble is on to find her neurosurgeon and get her staples out of her head this morning. Otherwise it causes, "scatter". Whatever that means. I've been told by the radiation oncology nurse that she is scheduled for 14 treatments.

Water torture

Day 11. It's interesting to observe the effect the duration of the stay has on you. Aside from the accumulated sleep deficit. One aspect I've noticed is how little control you have over your environment. Lights, sounds, people coming and going, and diagnostics and treatment are out of your control. At home you can shut doors, turn off lights and generally adjust the environment to meet your needs. Here, you adjust to the environment. The intrusion becomes debilitating. The other aspect of lack of control is the treatment. The Guardians hold the information and plan and I feel a constant need to be available when one shows up (without notice) to dispense their wisdom. You feel intrusive when you fight to understand and be understood. Plus you wait a lot.

All of this, and more, wears you down. It becomes easy to just go with the flow. But that's not always in the best interest of the patient as it's abundantly clear that within the hospital setting the left hand doesn't always know what the right hand is doing, there are transition and handoff errors, and people and systems don't talk to each other. So you have to fight your urge to acquiesce. And stay on point.

I got a bit of a battery recharge yesterday. Was able to be away for 6 hours. Had to take Daisy to the vet and do some chores around the house. Then had a wonderful dinner with Casey while Riley graciously stayed with Meagan. Steak and fries have a remarkably healing effect and sure beat hospital food!

"I wish I could think better"

who knows if that is the trade-off to diminished nausea (the cognitive changes a side effect of the scopolamine transdermal patch) or an impact of the cancer. She is much more comfortable this morning, but unable to think too well. So the TV is on....

This morning I'm trying to clarify what the radiation schedule is. On the hospital books she is supposed to start today at 2:30pm. But she will have to be transported by bed. I've got a call in to her primary radiation oncologist and make sure all the relevant parties are in agreement - and to find out if her staples need to come out beforehand.

a better end to the day

thanks to a scopolamine patch recommend by a friend in the medical field (the same used for seasickness)  - our gal has lost the vertigo and regained some equilibrium. The result is eating and drinking and walking. With no nausea. Victory! It was not without its challenges - after the docs agreed to try it - Swedish Hospital was out of it - apparently there is some sort of supply issue. I was able to track down six patches (each lasts three days) at our favorite pharmacy - Katterman's - which Kaplan had faxed over and my sister ran over and picked up the prescription and brought it down. A team effort!

I don't know the schedule for tomorrow  - need to talk to Kaplan in the morning - presumably he's referee'd the neurosurgeon and radiation oncologist and has a recommendation.

Not a great start to the day

Dr Kaplan was by at 6:15. He said we'd just see how day went, get the nausea under control. He will be talking to the neurosurgeon and radiation oncologists today about when to start the whole brain radiation.

She's feeling dizzy and disoriented when she moves or sits up. It only took her 1/2 hour after he left to throw up. It seems to me much like motion sickness instead of reaction to narcotic pain meds which she has been off of sense Saturday. The question is, is this a lingering effect of the hydrocephalus and/or brain shunt surgery or is it a sign of emerging effect of the cancer in her brain? It's quite disconcerting.

Hmmmm, not a good day.

Much dizziness, nausea, and not feeling great today. Didn't get out of bed. So no progress at self care or mobility. Kind of a step backward. Hard to tell what's going on.

There are no docs around and the nursing staff is sparse, although very nice. Hopefully we can get the great Dr Kaplan on point tomorrow morning. I'd hate to have her start brain radiation soon.

Proof!!: Einstein's Special Theory of Relativity.

Time really is variable. It moves very slowly when you are INSIDE a hospital room. It moves very fast when you are OUTSIDE it, such as when you are going home for a break. Who knew I was an experimental physicist?

Bureaucracy

Went online to see how to get a state disabled parking permit. Form is straightforward. Then the sinker - "you will receive your permit in 2-3 weeks".

Really? Seriously?

Time to reinvent how state government works.

"Fall back"

An extra hour in the hospital, with nothing open. You'd think in this hospital, and in this part of the city, there would be at least one place open where you could get an espresso. Nada. Only the 24 hour Shell station at Broadway and Pike. And that's just stale bad brew. Oh the burdens we carry. Especially when it's 31 degrees out.

She's reading this morning and definitely has double vision. Lines and images are stacked above and below each other (not like crossing your eyes and the images are side to side). Have to hope this resolves. Other than that, is feeling ok. Some pain at her incision points in her belly but no head pain to speak of. Wants to get up and move about more today - a good sign for getting out of here tomorrow. Just need to get her onto all oral medications.

Bad Side Effect of Being Cancercabanaboy

You end up being the bearer of bad news. Over and over. She didn't remember about her disease status. Was wondering about Dr Kaplan and treatment. I had to reminder her she wasn't doing chemo anymore and about her spinal fluid cancer and her brain radiation treatment and what we are getting (some time, hopefully). Then she said, "oh, that's bad". So we discussed some more what that meant in terms of how much longer she would have. She wanted to know if she would walk again. So we talked about her upcoming radiation and how that might affect her.

All in all she handled it really well, not distraught or teary. But I always feel like a heel. I know I'm not at fault and it's just part of the job. It still feels bad.

Seven nights, and counting.

You know you've been in the hospital too long when:

You get a permanent parking pass, but you can never remember where your car is parked.

You know what all the codes mean on the hospital public address system, but only pay attention to "code grey" or "code red".

The kitchen staff at 4:30am starts making your usual when they see you come up to the order window.

You know where the good bathrooms are, as compared to the ones used by walk-ins off the street who are not visitors or patients.

You can start ranking nurses and identifying favorites.

The nurses start sharing with you their impressions of the various docs.

You know enough to avoid the hospital cafeteria for dinner. "Natural" does not mean free range, organic, or free of hormones or antibiotics. Broccoli can be cooked too long.

A Surprising Day - No Surprises.

A day totally without cancer drama. The bathroom remodel (to make our largest bathroom accessible and safe for Meagan with grab bars, flexible fixtures, shower bench, etc. - I basically copied what is in her hospital bathroom) made up for it. In ripping out the fiberglass shower stall to create a tiled shower (so we could attach grab bars etc), dry rot was discovered. Then we had to pick "pretty" tile based on limited selection; i.e., immediate availability. Today our Greatest Contractor in the World spent the day bludgeoning plumbing supply people for the fixtures we need, and when the items had to be ordered, persuaded them to sell us the floor model. I was getting running updates and approving things based on texts and photos. It should all be done Monday late, a heroic effort. One we appreciate so much.

Meagan is doing well today. Ate some breakfast. Nausea is controlled. Napped a fair bit. She had several visitors. And is attempting to read tabloid magazines, even though her vision is still blurry. Had some occupational therapy Has agreed to watch some football with me tonight - Huskies against Oregon - go Dawgs!!

Been a bit of a rough day...

Although she was able to receive some visitors today, she was pretty nauseous throughout. They are fiddling with various medications and trying to (ahem) make sure her system is working end to end. The pain medication is being reduced, which is good news, and she seems to be tolerating the reduction. The plan is just to recover through the weekend and try to get more active.

One the home front the bathroom improvements are in full swing. Our contractor is truly amazing.

Dr Kaplan swung by for a visit

He came by at 6:15 to see her. Said plan was to keep her through the weekend for sure. He was not aware of radiation plan starting on Tuesday so was going to connect with surgeon and radiation oncologist to discuss/confirm. Will check her platelet counts and give her an infusion if necessary. Wants to get her moving more and reduce the pain meds as able. A recovery weekend.

Third Tour of Hospital Duty, Day 7

The disconcerting thing is I don't know how long we will be here this tour. She seems to be recovering nicely from the surgery. Hopefully, the surgeon will come this morning and unwrap her head and give us an inkling about whether she's fit from a wound perspective to get out of here. Then we need to get her up and moving and get her medications all worked out and her pain med in balance so she can function, not independently, but with constant support.

We are embarking on some emergency remodeling at home to make the house (ramp off family room back porch) and one bathroom accessible. It gets torn up today so I'm hoping she's at the hospital through the weekend. Should be completed by Wednesday. All possible thanks to the efforts of a most amazing contractor/handyman who not only is efficient and productive but is a wonderful, caring human being. I'm on standby regarding a walker and wheelchair, probably both will be needed. It's hard to anticipate what might be needed and how able she will be, at least this timeframe. It's also daunting to think of her medication needs and how that will be managed. I am going to talk to Swedish Visiting Nurses about support.

She slept pretty well through the night. I got some sleep too. Much better than ICU.

Settled back in Oncology unit

She's in good spirits; ate a hamburger, fries and shake for lunch. Stood up and took a few steps using a walker. She has no head pain and is thinking well and can articulate just fine. Resting as I type this.

Whole brain radiation is scheduled to start Tuesday at 2:30pm.  I think it is still twenty treatments - need to confirm with the radiation oncologist. We visited with her neurosurgeon for almost an hour; he is a friend of friends of ours. That was a nice surprise. We also ran into another friend who is a nurse, taking some high level training here at Swedish. Great chat with her as well. I also ran into an old work colleague. It's a big hospital, but still a small world.

It takes a real effort...

when you have an extended stay in the hospital not to get completely strung out on coffee and sugar. Especially when they keep the ICU so cool. Nothing like a hot chocolate or mocha when you are cold. And tired. But then you get in a vicious circle of blood sugar spikes and peaks and valleys. I'm trying to eat protein and things like oatmeal to be more in balance. And getting some exercise each day. Even if it's just a walk outside.

Kaplan was by at 5:45am to check her. He said the neurosurgeon, Dr Raisis, would make the call about getting her out of ICU and up to oncology floor. The boys and I had about a half hour conversation with Dr Raisis last night. Very nice man.

Eye of the hurricane.

I've been reflecting this early morning on where we stand (or perhaps it's hallucinating). Usually when a loved one comes out of surgery successfully and is doing well in ICU there is a large sense of relief. You can have some optimism about the future. I am grateful the relief valve is installed and that the pressure won't be a cause for pain. But I am acutely aware of the issues at hand and things that have been masked which will soon emerge. Such as her back and arm pain, for which we have no identified source or which can be addressed other than the symptoms. And the prospect of symptoms emerging relating to the new cancer in her brain, which can't be treated for at least ten days, if ever. And melanoma marching on in her lungs and other organs (including now in her abdominal cavity - yes, it's saving her brain but it is not without cost - that fluid is full of cancer cells). So the best analogy I can come up with is the eye of the hurricane. You've just survived the first onslaught of a Category 8 hurricane, that took place over seven months (counting from her stroke) and you"ve got a momentary respite. But you can see an eyewall right in front of you that is higher and fiercer than anything you could imagine.

The other day I was talking to someone and the subject of endurance came up. Endurance as in Shakleton's "Endurance" in Antarctica. A great book and a compelling true story. How do you keep going on when you've gone as far as you can. Is there a limit to what you can do? What do you do when you've reached the end of your rope?

I shall find out.

I give up

It's 3:50am. You cannot sleep in ICU. Coffee, here I come.

In ICU

Doing well. She's sleeping. I probably won't much. Too much activity, beeping, and conversation. They don't want her drugged and out if it, they need to assess her mental state periodically. Will be much better after she's out of here and back to oncology unit.

She was able to see and talk to her boys. We've already had one disagreement (telling the nurse how much pain med she needs and why - her recall is....murky....but she is still confident). I keep a Nick demerit tally on the white board in her room.

Her head is all wrapped up and she is sore in the various incision spots. But overall in good spirits.

Just talked to neurosurgeon.

Everything went according to plan. Surgery success. He hit the ventricle in brain the first time. Using laproscopy camera he said he could see the other end in the abdominal cavity and fluid was flowing. He thinks pressure in brain should normalize pretty quickly. He wants her to spend night in ICU for monitoring. Then back up to oncology unit.

What a relief.

"have we said all we need to say?"

I'm expecting this surgery to go well. There are risks. Especially given her condition. So you do kinda have to think about what if it doesn't go well. We are already anticipating an end, with her sights set on making it to her birthday on Jan 23rd. So we have been making sure we've said what needs to be said. It's very strange though. The answer is yes, but no. Yes we've told each other about how much we love each other and what we've meant to each other. So if it ended I wouldn't feel regret for having missed that big opportunity. But said EVERYTHING? Hardly. I am glad our relationship has had a lot of conversation in it. So a lot has already been said. But not enough, with an end in sight. And as I think about it, more and more things pop up. About the past. About the future.

But right here, right now I also have to balance her needs and keeping her emotionally stable, so she can fight the good fight and get through this surgery. By the tear gauge she's heard enough this morning.

Getting Ready for surgery

Meagan asked me to post the following comments to all her loved ones:

"I am so grateful for all your support. It has made a difference. I am so appreciative for all my friends and family. I could not be more blessed."

and Dr Kaplan paid a visit...

He confirmed the surgery for tomorrow to install the shunt in the brain (it is, in fact, brain surgery). A shunt is a little peace of plastic pipe with a one way valve in it, which can be adjusted for flow rate. One end is in her ventricle sucking up fluid (actually using gravity) the other end is put into her abdominal cavity. That way it is an enclosed system and reduces risk of infection (as compared to having the tube outside the skin and expelled). The fluid in the brain is drawn down and pressure relieved, and it is absorbed by the body in the abdomen. The neurosurgeon bores the hole in the skull and threads the plastic pipe to the ventricle (a tricky bit of maneuvering) and then a general surgeon runs it under the skin to the abdominal cavity.

Dr Kaplan said we didn't need to make the decision about radiation yet. He wants to wait at least ten days and have her recover and get stable and see how she's doing. He confirmed, no chemo.

Surgery blocked in for tomorrow

Neurosurgeon stopped by. 2pm is tentative time. Probably a bit later. But her counts are up thanks to infusions. She will continue to get them overnight - one more bag of blood and another of platelets. Waiting to talk to Dr Kaplan.

According to neurosurgeon the plan is to not do the chemo, but to do whole brain radiation. That wouldn't start for around ten days after the surgery tomorrow. They want to give the wound time to heal. We'll discuss and confirm with Kaplan.

Update

She is getting an infusion of platelets and a little later some whole blood. Her counts are very low. They can't do shunt surgery unless her counts are up and her blood can coagulate. The neurosurgeon is targeting Friday if she is ready.

"I'm not afraid. Just sad"

We saw our dear Dr Kaplan this morning. He has a lot of homework to do but once he does will be back. First order of business is to get her platelets. Surgery is too risky now, risk of bleeding is significant. If they can't get her bloodcounts up then no shunt. Which means have to manage water on brain through much higher steroid dose and a drug called mannitol which is a diuretic and pulls fluid out of brain. She's on both now and it seems to be helping. No pain or nausea this morning. But definitely double vision from pressure on nerves to eye. Kaplan will consult with neurosurgeon today.

If they get the shunt in that makes the situation easier to manage. We then talked about what next. He's not sure chemo to brain or spinal fluid would be helpful or worth the side effects. That approach versus melanoma hasn't proven effective. So he agrees with what Dr Fer said yesterday And whole brain radiation won't solve it since it's in the fluid. So we may be at an end to treatment.

Thus her statement.

I was taught a wonderful lesson

in the wee hours this morning by the night nurse. I had been sitting by Meagan's bed holding her hand while she slept. Looking at her, all frail and battling this terrible disease which was affecting her physically and mentally. I pulled out her driver's license to look at her "before" picture, remembering how beautiful she was and how much she loved her sassy auburn colored hair. And thinking about how unhappy she was going to be losing her hair to the chemo.

Then the night nurse came in to give her a round of drugs and we got to talking. She made a comment about how beautiful Meagan was. I made some comment about, yes, but she is not going to like being bald and you should see her before picture. The nurse was very gracious, but proceeded to tell me I was wrong. She said that when they go bald you are drawn to their eyes and can see into their soul. And that the inner beauty and love the person has comes shining through. And that in all her years of tending very sick cancer patients she had learned that the inner beauty and strength was what you needed to see.

Humbling and beautiful sentiment. See them as they "are", not as they are.

A caregiver at the hospital

The thing about being a patient and caregiver when you are at the hospital is that you are at the mercy of the system. And timeslots and schedules are out of your hands There are all these independent specialists you need, but who are engaged in very busy private practices. So it puts you at their whim regarding time and schedule.

Ideally I would be able to drive the agenda and calendar. For example I would have Kaplan here at 6 today to discuss options and consequences and then schedule the shunt surgery at 1pm to allow me time to run home and work out and change. And have friends and family here. The neurosurgeon and general surgeon and anesthesiologist would accommodate our needs.

Yesterday, instead of having to be around from noon on waiting for the neurosurgeon I could have taken a break. But the caregiver cannot just leave or delegate to others. Because when they show unexpectedly, your knowledge and history end up being vital. Not just past medical history, but how Meagan is doing in the present. Literally a part of the team, albeit the junior member. The neurosurgeon asked me a ton of questions then hauled me into the visiting doc office and pulled up her scans and talked out loud while he thought about what to do. I would not have wanted to miss that in favor of getting some exercise. And it is also very clear that for something like Meagan's condition there are many divergent opinions, and being the functioning person at the center means you hear them all and are the only person able to sort it all through and make sure the primary doc, Kaplan, hears it all before his recommendation is developed. Yesterday I heard the stand-in oncologist say he didn't think chemo to the brain was worthwhile and why, but whole brain radiation was, the neurosurgeon dissed the radiation oncologist and said he wouldn't do whole brain radiation but would do chemo, and of course the radiation oncologist is hell bent for leather to do whole brain radiation. They at least all agree the shunt should be put in. I will be very glad when Kaplan shows up in a while, he gets to be the general contractor in charge.

All this to say, I am not trying to be here 24x7 and not accept help or relief. I'd love to have a regular schedule. I'd love to have a rotating cast of friends and family spell me, sit with Meagan, be with me. When we are in a recovery phase or stasis phase that might be possible. But in this phase, "high alert be ready for the important people when they show phase", it's just not possible. You get smarter the more experience you have so I should be able to manage it better than most. Today I was up at 4am, knowing I could get coffee downstairs before they close at 5am and regular facilities don't open until 6:30. I also know I am likely to see Kaplan around 5:45 to 7:00 so I'm ready and primed. Then once he's gone I know I'll have a window to get a break because they need her to not eat or drink several hours before the surgery, so even if I'm gone and they figure out they can get her in for surgery at 1pm, I can be back in time. I also know the surgery may not happen until Thursday. And we may not get notice until hours before. Oh well, having an accepting, zen-like attitude helps too.

Neurosurgeon makes an appearance late this afternoon...

Planning on putting a brain shunt in - one end drawing fluid out of a ventricle in the brain, the other end into her abdominal cavity where it gets reabsorbed. Probably between now and Thursday, depending on availability of a general surgeon and she needs to get her blood counts up so they are going to give her blood. This should do the trick to relieve the pressure. It will have a valve in it that can be opened and closed depending on the need to do chemo into the brain directly and spinal fluid. He is also going to start her on some different meds to draw fluid out. Plus something else to get the nausea under control.

He was not a fan of doing the whole brain radiation - thinks it's pointless if the fluid has cancer cells and the brain just gets reseeded. Glad Dr. Kaplan is back tomorrow to referee. He will be a welcome sight as it is clearly complex in terms of what to do next after the shunt gets put in.

The surgeon did show me the detailed MRI where you could see the teeny cancer cells/tumors lining the walls of the ventricles and also see lots of other teeny tumor activity elsewhere.  Not good at all.

"Honey, I've loved you every step along the way"

she said this to me earlier today, in a moment of lucidity, although I know she didn't mean it 100%. I mean, I have been a pain in the ass at times, so there were a few steps that more likely ranged from "strong like" to "neutral" than love.

We did get a chance to talk this morning, around 7am. She was alert and thinking and it was the first time I could tell her what happened and what the story was, and what to expect. She knows she's in tough shape. I did tell her I did not think she would die this time, here in the hospital, that this was an episode from which she'd emerge. But that given where it is and how it has presented that while we could buy some time, we wouldn't beat it. So she gets it. And that's when we exchanged some lovely sentiments.

I also told her that it must be difficult seeing two of me...

Monday morning update

She slept pretty well. Early this morning she was awake and alert and we were able to talk. She was pretty lucid. She ate and drank some. Unfortunately she has double vision.

I've exchanged email with Dr Kaplan so he's aware. He's back tomorrow.

Devil's trade-off

She's not in pain. But she's completely wacked out. Incoherent. Not sure which is worse. This is no way to exist. She hates it But it's likely how she will exist at least for the next day or so, until we reach a decision about what to do. Even then, it's likely to result in a compromised state, with a shunt draining fluid from her brain.

It was awful yesterday, listening to her lament about the pain. She kept asking me why it hurt so much. Today, it's a different - all she can do is lie there, asleep. Only brief moments of consciousness and then she's not at all lucid. It's times like this that I wish for her sake it would end. Why does the end have to be a choice between these two awful states?

Maybe this will end up being an episode from which she can recover and still have a reasonable quality of life. But if this is a harbinger of the final glide path, it is not the way she would want it.

I just got off the phone with her radiation oncologist (on a Sunday) and she said that yes, there are tiny cancerous cells at the base of her brain, like snow but enough apparently to clog things up and create the pressure. She wants to do whole brain radiation to melt those away. It would be twenty treatments In the meantime she thinks the neurosurgeon should put in a shunt so the pressure can be relieved. That also provides a way to dump chemo directly into the spinal fluid if Kaplan wants to go that route.

Nothing likely planned for today

Oncologist would prefer we just keep her stable and out of pain. He's got a call in to neurosurgeon to discuss but as he said, it's elective at this point so let's go slow. Not going to be discharged anytime too soon. Likely a procedure tomorrow or Tuesday - but they may want to do a spinal tap to diagnose more.

Likely culprits are new tumors or cancer cells in spinal fluid.  This week will be complicated - getting her in for Cyberknife in the near term, whether she can even do chemo (her blood counts are way down), and then diagnostic and pressure relief procedures.

This is not at all a good development.

We wait.

She's resting, kinda knocked out from drugs. It beats pain though. We await conclusion of medical team on how to proceed. Of course we don't know if they've even talked yet.After all iIt is Sunday morning. And she's stable. So it could be late today. And they may want to take babysteps.

At Swedish Hospital

Meagan is in quite a bit of pain (headache) due to the excess fluid on the brain. It can be controlled by medication, but it took quite a while to get it figured out. It's a narcotic, which makes her nauseous so they add anti-nausea drugs first. Around 10:30 last night they got both in her which knocked her out until 3:30. She woke up then due to pain, got sick, then they got her another dose. I got the nurse to have the doc get her on a regular schedule and a pump so she can control it. That should help and at a minimum get her stabilized from a pain perspective. But it has been a very rough 24 hours for her. Her nurse Lizzie is very nice and competent. I like her doc too, he's Dr Kaplan's partner standing in while Kaplan's away. Although we will try to hold off major decisions until Dr Kaplan is back.

Today the neurosurgeon and neurology and oncology team will huddle and figure out what to do. They need to find a way to relieve the pressure, figure out what's causing it, and come up with a solution. But it's a grim turn of events. It likely means there is significant involvement of the cancer in the spinal fluid with cells blocking the normal flow. Or maybe one of her new tumors is gumming up the works.

I really dislike being here for lots of reasons. It's the right place for her to get the care she needs. Personally, it's impossible to sleep with all the constant beeping.

Another chapter.

ER, again

My premonition was right about this day, if the reason was off. Battled head pain and nausea all day. After talking to on-call doc twice, we decided to bring her in to ER. Good thing. Because her head was hurting so badly and fact she has two new tumors there was concern about bleeding, and she has a history. Turns out that was not the issue. The issue is swelling, a buildup of spinal fluid in the brain. Neurologists are evaluating now. Not clear yet on cause or solution. She's on pain meds and anti-nausea and saline for dehydration. She's resting, pain easing a bit. We are on standby until ER doc and neurologists have a game plan.

I'd hold off coming here until we know what's up. Casey is here with me and so is Meagan's sister (Riley is out of town).

No call to doc, yet

she was able to walk - slowly and scarily, with my support, to the family room. The side effects listed for Abraxane include weakness and dizziness - which could explain her instability. Add the shaking she was already experiencing from the steroids. They also caution about getting up too quickly, so it may be that we just have to move very slowly.

Why does this always have to happen on a weekend?

Of course it doesn't, her stroke was on a Monday, her seizures a Wednesday and her recent pain episode on an early Thursday morning. Still...

Dreading the day ahead...

I hope I am wrong. But I have a really bad feeling about today. Yesterday she was very unstable, the only time she walked on her own was yesterday morning as we entered the hospital to check in, and she got very unstable and had to sit down and from then on, for the rest of the day she was in a wheelchair. When we got home in the afternoon, she was able to walk from the car up to the living room with my assistance, but then her legs started spasming and gave out and I had to carry her to her chair in the family room. She spent the entire afternoon and evening there, napping, reading, eating and chatting (not needing to use the bathroom). When it was time for bed, she tried walking to the bathroom, but the same thing happened. I finally got her in bed, and she is sleeping soundly. But throughout the night, her legs have continued to spasm, although not as frequently as when she had weight on them.

So I am poised to call the on-call oncologist this morning (Kaplan is out of town). We will test her legs when she gets out of bed (with my assistance). If she has any difficulty, I'm calling. I don't know if it means a run to emergency, or just check in to the hospital. Or wait until Monday. What should happen is a scan of her spine. I suspect tumor involvement impacting her leg function. It would be consistent with the pain she is experiencing (which is now masked by the medication). It would also be consistent with her prior spinal tumors. Hard to believe it is medication related. Whether it is locally recurrent and can't be treated again (her spine from T-11 to L-4 had tomotherapy radiation) or in another section of the spine which can be treated is the question. There are only two treatments - chemotherapy and radiation. In any event, since the chemotherapy is already happening, radiation wouldn't start for a while and takes even longer to have an effect. So if it is cancer which is causing the instability and loss of leg function, it means she will be in a wheelchair for a while, if not forever. A dramatic and ugly turn of events. Emotionally and physically.

Thus my dread.

more zingers...

On the way in the car to get her MRI this morning, Meagan started reflecting on our friends. In a very good and positive way. She was marveling at how many of them, now with kids having fledged the nest, were embarking on new adventures. Between new hobbies, travel, volunteer and career opportunities - many are redefining themselves and opening up to aspects which have been lying dormant. It is a great thing. Then she asked me - "are you sad that we are not able to do that?". Answer - "heck yes". Who would choose being a cancer victim or cancer cabana boy? It is terribly disappointing to have this yoke around our necks - especially with little prospect of relief or a better future, certainly a better future together. So we commiserated together - partners in previous good times and now partners in a tough journey.

Meagan brain update.

> "Only" two new small brain tumors. Will cyberknife them next week. Probably the best result we could have hoped for at this point. Pain in her back is now controlled with the new medications. But she is very unsteady on her feet (she used a wheelchair throughout medical visits today) and I had to carry her into house. Hope it's just the meds or chemo. Napping comfortably at home now.
>
>

Pain management.

In terms of her arm/shoulder/neck pain Kaplan does not recommend further diagnosis (spinal tap). Since it's likely cancer in the spinal fluid, you can't radiate it and chemo is only option and since she's on chemo anyway (her blood counts were ok and she's hooked up as I write this - happily munching a roast beef sandwich) he felt like additional testing wouldn't alter the treatment.

In terms of her back pain, the area she is feeling pain is in an area already radiated by Tomotherapy. Which can't be radiated again. So not much point in scanning it. Have to hope the chemo works and that the prior treatment is still working. So in meantime he's bumped the dose of the nerve pain med and added to the general pain meds. Of the non-narcotic variety.

So a lot of hopes pinned on the chemo and radiation. Both of which have historically very low success rates, sometimes slowing the cancer down for a while.

The disconcerting info is that where the pain is now, is where it will be in the future, barring treatment success. So pain management could be huge moving forward. Including having to move up to morphine. Which means a host of issues to address on a long term basis - nausea, loopiness, fatigue.

She's trying not to think about all this.

Cancer equals Pain

Rough morning. Her back was really hurting - it does not seem to be responding to the gabapentin and steroids the way her arm and neck did. Probably will get another medication from Kaplan today, as well as get a scan scheduled to diagnose the back issue.

It's becoming more evident that the tumors and cancer aren't playing nice. The skin tumors never hurt her, and she couldn't feel the brain or lung tumors (she has no recall over the stroke from the burst tumors). But cancer of the spine - those things hit nerves and that means pain and that is just not good. It is debilitating in every sense of the word, she can't think or do anything. She had a bit of a freak-out episode she was so frustrated by it. So we've got to get a handle on this.

Gearing up

No medical appointments today. Tomorrow we see Dr Kaplan.

First she has a blood draw to make sure she is ok to continue the chemotherapy. So far she is doing alright, after her first treatment last Thursday. She feels relatively clear and not very sick. It's really hard to correlate the symptoms she is experiencing to particular treatments or cancer driven things. For example she is very unsteady. Is that related to the chemo, the meds, cancer showing up in the spinal fluid and affecting nerves controlling balance and gait, or a new brain tumor? She also has pain in her lower back - reasonably well managed with the pain meds she is on for her arm, but she still needs ice and ibuprofen to keep it down. That pain is likely not driven by the chemo, but by the cancer. So we need a scan of that area, but it is not the highest priority right now.

The countdown is on for the hair loss - it's been seven days and it usually occurs between days 14-21. She bought some fake eyelashes on-line yesterday and got her wig ready...

We will also talk with Kaplan about the spinal tap as a diagnostic procedure for cancer in the spinal fluid. My guess is he will want to wait to decide until the results of the brain MRI (Friday). My hunch is that even if he suspects cancer is in the spinal fluid (which is pretty likely from the research I have done) he will not want to recommend the spinal tap as the treatment (chemo) is what he has her on anyway. He may recommend radiation but that kind of treatment may not be too effective for cells in the fluid - it's better for solid mass tumors. The usual treatment for spinal fluid cancer is chemo poured directly into the fluid through a port surgically implanted in your head - which doesn't sound at all attractive. If she has brain tumors, treatment for those take priority.

In late stage cancer this is what typically happens - the tumor burden starts increasing and it can overwhelm the body's ability to handle it or the body's ability to deal with all the treatments, which must be staged and sequenced. Pain management becomes a bigger issue.