Rhythm Being Estabished

Things seem to be settling into some sort of rhythm and Meagan is improving steadily. Her speech is back to normal. Last night she ventured onto the computer to finish a movie. She then went to her email and with a little help from Casey and me was able to start deleting junk mail. Took a bit of repetition and reminder but she did it. She is moving around the house confidently and handling her own dressing and self-care. She walked around the block again yesterday and did some yoga with the occupational therapist.

"How's it Going?"

An innocuous enough question. In our culture used in same way you'd say hello, or the Italians would say "va bene" or the French "Ca va?". I remember the old joke about how the French could have a conversation with two words that went like this:
Person One: Ca va? (how's it going)
Person Two: Ca va. (it's going alright)
Person Two: Ca va? (how's it going for you?)
Person One: Ca va. (it's going alright)

Only the tone and inflection vary.

But I digress...even though I know it's just a way of saying hello, I do have to say it's kind hard to say, "fine thanks, and you?". Because it's not going fine. It's not going well at all. I have a wife with metastatic melanoma who also just suffered a massive stroke and brain injury. I need to invent a new phrase to respond that's more appropriate to the situation. Maybe I should just slip into a little of my language skills and answer, "Come si, comme ca". It's closer to reality, most people get the ambiguity, and I don't have to give them the whole sob story.

Corn Flakes

The body and brain and are mysteries. I feel like a detective, trying to assess Meagan's physical and mental condition and adjust each day to suit her capacities and inclinations. Yesterday (Wednesday the 27th) was a pretty good day for her. By the end of the day I thought the right balance had been struck between rest, rehab, and relationships. She was able to get some stimulation and work parts of her body and yet also enjoy some times with family and friends. And funny enough, her body continues to crave and demand certain things as it attempts to resume control over her sodium levels. So Ritz crackers remain high on the list - munching quite happily 3-5 with each "feeding" as I term it of her pills.

Rehab Day One

How can you not love a woman, whose final words falling back into bed after being awakened at 6:00am to swallow 3 sodium pills washed down by 2 Ritz crackers and milk were, "life is good". 

Notwithstanding the frustrations and exhaustion that came from rehab sessions yesterday, she remains upbeat and positive. Those sessions drain her. Seeing people gives her energy. I can do the math. We will be adjusting her rehab sessions so she gets rest and/or naps in between. She's also ready to see more people. Her language skills are back to where they were before. She is moving around the house confidently and handling her own care. She still needs me to tell her schedules and such, the numbers part of things and organization part of things aren't there, although she doesn't much care. The keyboard is still a huge challenge, so that won't be a part of her life for some time. She is quickly adapting to her visual field issues, and is unconcerned about her inability to drive.

She dropped at least 8 pounds in the hospital - we've got her back up about 3 - but 5 to go to get back to her usual weight and we need another 5 on her to get her ready for future treatments. So abhorrent as it is for those of us who read The Omnivores Dilemma and Fast Food Nation, yesterday she had a Big Mac and fries. Plus an Odwalla protein shake I laced with a large scoop of Haagenn Dazs vanilla ice cream. Casey is all over her about how to ingest the right kind of foods to bulk her up, even though he and I are on more heart healthy food programs.

She also thanks everyone for the cards - it's a great way for her to practice reading.

Day One of Rehab - a summary

One of the things I learned quickly today is that it is very easy to overtax Meagan. Especially when she is being asked to rewire neurons and learn new pathways to doing old activities. It was frustrating for her and just too much to have too many rehab people. That said, it really wasn't too much for a non-impaired person. But when you've received an insult to the brain, what you or I might think of as easy or normal is not.

We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.

The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.

It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.

Day One of Reahabilitation

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

The Dawn of a New Era

First a recap on how she is doing. Then some thoughts.

New Duties, New Blog Title

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

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

She's Home!

Meagan is happy being home. She got to kiss the dogs, although they nearly knocked her over (well, one did). She walked in her lovely garden on Casey's arm. Had a long talk with Casey. Ate high sodium Chinese food. I can't say our first night home was restful for me, but perhaps she will have a different take. She has to take pills at 9pm, midnight, 6am, 9am, noon and 6pm. So I have multiple alarms set. We also aren't letting her walk anywhere unaided, she's too unsteady and isn't used to her visual field deficit yet. So there was a 3am bathroom run. Bobbie Baker had a brilliant idea to get a baby monitor so when I am up and she wakes up she can call me and I can help her up and out of bed. We tested it at 6:15 this morning and it worked perfectly although scared the heck out of me as I was drinking my coffee. But she's back in bed and hopefully will sleep until 9am. It is a very unnerving experience to be in such a quiet environment after nearly two weeks of noise. Today will be a day of calm, and adjusting to her surroundings. We did have railings installed on the front porch steps, and I hope to get her out and down the block at some point today. But overall a smooth transition, she's happy to be home, in her own bed and chair, and with two of her men and dogs.

Fwd: Good news ! Going home today!

>

> Got medical clearance. Staples were taken out. The discharge process can take hours. Including getting prescriptions filled here which our pharmacy may not have. Don't know the ETA but it's today!!
>
>

Friday Evening Update

Meagan is contentedly watching "When Harry Met Sally" on her laptop, snuggled in her hospital bed, wearing yoga clothes, with her cashmere shawl around her shoulders and her wool hat on. We enjoyed a hospital meal, although enjoy is not really the word I'd use. She is feeling quite good. She is very tired, overly tired due to the large number of assessments foisted on her by medical staff here. Most if it is all good, it sets the stage for therapy and insurance approval when they document her status. But it's tiring. And she discovers new things about herself - those insults to the brain. For example she has difficulty with numbers and dates. There are a litany of things about her which have changed, none of which are worth highlighting or listing. It seems too demeaning, and not focused on the positive aspects she retained. Many issues will resolve in time. She's still Meagan. We will pursue therapy actively, and are looking at options including a home based service. But she is tired of all the assessments and poking and prodding - she doesn't like to fail and when she misses something that competitive spirit comes out. And yet she is remarkably sanguine about it all. As Terry highlighted in her recap - she is approaching this whole thing in a very positive way. Over dinner I recounted the entire last two weeks and she has very little memory of it all. She is sick and tired of being here and wants to be home so she can kiss the dogs and be with Casey. But she will not leave with unpleasant thoughts about this experience or where she is right now. 

We've talked about the process and game plan for her cancer which we will develop with Dr. Kaplan once she is discharged from Harborview. She is aware she has to undergo radiation treatment and then two weeks in the hospital on Interleukin 2. She is quite fine about it all. Timing is all uncertain - brain recovery has to occur first.

In terms of discharge we are eternally optimistic. Her sodium levels have recovered to the appropriate levels - now they just want to see them stable and have decreased the intervals in between checking. They are using an abundance of caution, which is fine. "Que sera sera". When she goes home we want it to be for good. We've convinced the medical staff that we are going home after medical discharge and will deal with therapy on an outpatient or in-home arrangement. We've cited the Meagan's Fairies network as one example of the fabulous support we have. So all the wheels are in motion for discharge, the neurology team just needs to give the go ahead. Her numbers tomorrow morning will likely dictate their decision. It could be tomorrow or Sunday or Monday. We will let the docs do their job and exercise their judgment and we will be fine either way. Tomorrow really is a day of rest for her - she did have over 5 assessments today and they are just draining. Stroke victims need their day rest!!

I am incredibly impressed and proud of her - I do not think I would be approaching this situation with the grace and optimism and joie de vivre she displays. I think you will all be quite relieved and happy when you have a chance to visit or talk with her. And that bad ass scar - wow that is one impressive momento.

Nick

The Top Ten List

Things I've learned during our 252 hours (and counting) stay at Harborview. I reserve the right to add to this list, after all, there is at least another 12+ hours to go on the day shift.

1. The intersection of 9th and Jefferson in Seattle may be the most interesting and entertaining place for people watching in the City. At least in broad daylight. "Code Zebra" means an escaped patient. They may only want to escape as far as the intersection.
2. Hospitals are no place for sleep or rest. There is a cacophony of sound almost everywhere at any time. ICUs have monitor alarms going off constantly. I really don't know how an ICU nurse sleeps at night, the residual echoes in your mind must be something you get used to It's a bit quieter in the wee hours in the hallways and waiting areas. I use that time to try to distinguish the homeless from a patient's family.
3. It's crucial to stay overnight with your loved one. The accommodations are lousy but the company is great. They have these cushioned chairs that fold sorta flat akin to a first class seat on an airplane. Don't bother bringing jammies, I just slept in my clothes and went home each day for a short while to exercise (that happened maybe every other day ) and change.
4. The medical tribes are fascinating. The nurse tribe is the one you rely on after the big surgery. They make all the difference in quality of care for patient and family. Their skill at needle poking is crucial especially when the veins start to collapse. Then there are the doctor tribes. You have the top gun surgeon who pops by each day for a 30 second flyby. He's looking at things from 30,000 feet. Then the neurology team who come by and do the tests on progress and recommend drugs, dose, quantity and frequency. They are followed by the ICU team that usually has a different point of view. How it all gets reconciled is beyond me.
5. By far the most difficult challenge aside from patient support and advocacy is visitor management. Especially when it's someone like Meagan who loves so many and is in turn loved by many, all of whom would like to visit. Being at the center of that communications and logistics management hub turned out to be far more time, energy and emotional trauma than I imagined. I felt a responsibility to get the word out about status and progress and recognized I was only one who could provide info people wanted and arrange logistics. But next time around I would seek support and turn off my iPhone except for my kids.
6. Without support of friends and family we wouldn't be able to pull this off. From smoothie and food delivery to spelling me, the logistical and emotional support has just been incredible. Thank you, thank you, thank you.
7. Semi-private rooms are nothing but. The privacy curtain is an illusion.
8. Once you are able to get out of a hospital gown, do so. Bring comfy clothes.

More to follow....

Greetings from Alcatraz

The scratch marks on the walls marking time are running together. We look longingly out the window at freedom and light. Maybe maybe tomorrow will be the day.

Meagan is doing very well. Right now she is cozy in her hospital bed watching a movie on her laptop She ate all her good high sodium food today. She is in good humor and comfortable, if a little exhausted. Her sodium levels have stabilized so far. I suspect the neurology team will give the medical sign off tomorrow.

The therapist team is another matter. While we clearly recognize the insults to the brain she has received and the resulting impact (visual field, memory, speech, balance) we think they are mostly resolvable. And can be addressed by living at home and doing outpatient therapy. So we fight that battle tomorrow Which if successful will also allow us to reengage with Dr. Kaplan on the overall cancer battle. Which will start with radiation on her brain tumors once the swelling from the surgery resides. Then on to Interleukin 2. That's the two week hospital stay (boy am i looking forward to that....) And maybe some interim tumor removals for kicks and giggles.

She is remarkably optimistic and anxiety free. The focus is on a high quality of life. Part of that involves how she allocates her time. Her brain needs time for sleep at night and during the day. Stroke victims need this. She tires easily She also needs quiet awake time for herself to adjust to her new physical and mental status and the path to improvement where able, and time with family. Then will be the many occupational therapy visits plus the cancer treatment visits. All this to say she has a lot of demands on her time.

Which pains her greatly because she wants to see all her loved ones who wrapped her in her coat of arms during this ordeal right away. But it just won't be physically possible all at once. And it may take her a while to resume proficiency with Facebook and email. Which for a word and literary gal is a bit disconcerting So we do ask your patience and understanding. We will need help once home and there will be opportunities for all. I'm not letting her near a stove! Driving is out for six months if not forever (hard to be a safe driver if you have no right peripheral vision) so we may need chauffeur help too!

Once again thanks for the many expressions of support. We hope to be out of here soon and on to the next stage of this adventure.

Day 11 (depending on how you count)

Finally up to neurology acute care. She's de-hooked from all monitors. Blood draws every eight hours to check her sodium levels. But all the medications to reduce brain swelling seem to be working. She'll still be on a fistful of pills each day even after discharge but she has no problem with downing them.

She gets evaluated by a therapist today. If she gets the thumbs up she could be discharged Friday. They will be evaluating her capabilities around balance, independent walking and strength as well as home conditions and support. If they feel she needs more time then they'd evaluate on Monday and we'd likely then get her discharged Tuesday. Discharges don't happen over the weekends. This all presumes her sodium levels are stable and her surgeon gives the ok.

A big thank you to all who have and continue to support us during our stay. We had dear ones drop off high sodium items as needed - Odwalla juices, smoothies, French fries, portabella mushroom sandwiches with yam fries, and carrot cake. Amazingly the hospital has no high sodium drinks that are thirst quenching, and only milk as a reasonable option. Kinda tough when you are under doctors orders for water restriction and high sodium. I'm also grateful for those who stepped in to spell me on short notice. As she got out of the woods I felt more comfortable leaving her in trusted hands.

She's in much better shape to receive visitors, particularly if we are stuck here over the weekend. She tires easily and may need to drop off for a power nap but other than that she's regaining strength rapidly. She's making great progress on her speech, you'd hardly know she has aphasia. She does lose her train of thought from time to time and she has lost memory of some events and has some short term recall issues - hopefully all resolving in time.

Our "room" at the hospital is small and shared. We have a curtain for visual privacy but there is not much space for anything beyond her bed and two chairs. So please, no flowers or gifts. When she's home the best gifts will be your support through the network Bobbie Baker had set up. We will need support.

I've learned a lot through this stay. The value and importance of friends clearly at the top, along with their willingness to augment our supplies here. It's true about hospital food, it's pretty bad. The need to be your own advocate, but most importantly for the caregiver to be vigilant and questioning. There are too many opportunities for slip-ups in transitions. The importance of being right by her side day and night. She's needed the trusted companion there, because stroke victims can be confused and even if you are not confused due to brain injury or sedation you need to be the one she looks to. So it's a lot of sitting or "sleeping" by her side. Hospitals are noisy places, you don't really get sleep. Last night she (and therefore I ) were awakened 4 times from 1am on for blood draws, pills, vital sign checks, and a bathroom visit.

There are many more things I'll write about eventually. Once we are outta here. And once I've recovered myself. I really do look bad, hahaha.

Nick
206.920.7364

It's moving day!

From intensive care up to acute care, both in the neurology wing. Great news, it means one step closer to discharge. And it clearly means Meagan is getting better physically. She continues her progress on speech and memory. Tomorrow it's standing and walking. Thanks to doctor's orders she's on the high salt diet - fries, bacon, soups. The opposite of the anti-cancer diet but it's what she needs now.

"Welcome to the Hotel Harborview

Where you can check out but never leave". Progress on many fronts today. Miss Chatterbox is back, although occasionally she will have what she calls "a mind blight". Off all monitors. Sodium levels stabilized thanks to salt horsepills three times daily plus French fries, ham, basically anything salty. Tomorrow she's going for Fritos! We are still in ICU but only because there are no beds in acute care. I brougt down her yoga type clothes and hopefully she can get a bed up on acute care tomorrow and get out of her hospital gown. She'll need a couple days in physical rehab too. I hope hope hope we can get discharged Friday because they don't discharge over the weekend. But we will let the pros make the judgment. she looks darned cute In her wool flapper hat with the roses on the side. Great to see her eating heartily and her strength returning. She's charmed all the staff and docs of course especially with her mild aphasia and some funny complimentary phrases. The one thing she gets a bit peeved about is the "trick questions" from the docs. Ones like "where are you, what's the date , what city is this". She wants multiple choice and she always gets it right. The sparkle in her eyes is back.

Monday April 18 update

Monday evening update. April 18. 

A solid recovery day in ICU today. Her sodium levels have stabilized and her brain swelling is coming down. By tomorrow she should be able to get by with salt tablets, water restriction, and drinking high sodium smoothies. Probably a while before her body can self regulate. I expect she will move out of ICU tomorrow up to floor 3 acute care.  She'll be free of IVs there and constant monitoring. That means more sleep (they wake you in ICU every two hours, only every four in acute care). I think the sleep deprivation makes the recovery from aphasia harder. She will continue on the meds for brain inflammation and seizures   She also wants out of her hospital gown so I'm hoping to get her into her yoga clothes  tomorrow  From there it's hard to say what happens before she is discharged. She will likely be a couple days in acute care to start walking and sitting more. She needs to build strength and balance to walk independently  Hopefully evaluated by therapists then likely a stint of some duration on the 4th floor for intensive therapy. That will involve speech therapy as well as addressing right side weakness and her lack of right peripheral vision. 

Dr. Kaplan, her oncologist, called tonight to check in on her. He will visit later in the week. She's obviously concerned about getting on with the cancer battle. We'll discuss the new game plan with him. 

She's sick and tired of the docs on their rounds asking all the questions. Ditto every nurse change. Frustrated because she can't find the words. If you ask her what day it is she can't answer. But if you ask her if it's Monday she'll answer correctly. So I'd say the frustration level is much higher than last week at where she is and the pace of recovery. It does seem a bit slower  I reassure her a lot. I'm also not bringing up issues which might upset her, like how this might change certain plans we had prior to this event. 

What I'm really realizing this go round is she is a stroke victim as well as a cancer victim. Even though it was a cancer brain tumor which caused the brain damage.   Both have to be addressed, differently, and it's harder to discuss the cancer when she's having difficulty understanding and expressing. Patience and clarity are needed. And there are times when she says "stop " it's just not registering and she needs a break or rest or nap. In fact there have been times she's been peeved with me or the docs. But no different than how I'd be. 

The personality, humor, warmth and wit is all there. She's still Meagan. She just has a few differences. Most should resolve in time. Some may not. As they become less of a front burner concern the cancer will move front and center. Our options have been limited but there are still ones on the table. It's a fight she's ready for. 

Greetings from Harborview ICU on Monday morning April 18. Day 8 of the ordeal.

Meagan is doing pretty well this morning. It's hard to sleep when they are waking you up every two hours to give you pills, an IV infusion or worse to have to tap a new vein to draw blood to check her sodium levels. Her veins are shrunk due to dehydration so it's a painful process if they have to put in a new line. She is very thirsty ("I want water"), but she is water restricted. She hates V-8 and tomato juice. Is tolerating ice cold milk. The goal today is high salt and potassium smoothies I think. We are hopeful she can switch to salt tablets at some point today. They have to bring back to normal her sodium levels slowly. "Cerebral sodium wasting" is a funny term for a bad condition. For some brain surgery patients a few days after your brain just tells the body to dump sodium. That alters the water balance in your body and brain and as a result your brain swells from too much water. Not good. Causes severe headaches and impairs functions up to unconsciousness. Until her body resumes balancing electrolytes and fluids naturally she has to have infusions and testing.

Her aphasia is improving steadily. She's gotten much better at getting the point across even if the words aren't right. But it's still frustrating because sometimes she can't find the right words and we can't guess. And then every once in a while out pops a complete sentence with complex words. The docs are hopeful this condition is not the same as from the surgery but just a reaction to the swelling and that it will improve rapidly. There is no change on her restricted field of vision on right side. When she is looking straight ahead she can't see anything peripherally. We are told likely permanent so coping mechanisms are what she will learn. She also has balance and weakness on right side.

She's regaining her appetite and we are on the road to regaining her lost weight. She's pretty specific about what she does and doesn't like. Mashed potatoes and gravy have been good.

There is sort of a plan. Get her out of ICU (and therefore off IVs). Get her back up to 3rd floor acute care with continued monitoring of sodium Get her to sit in a chair and walk a bit. Get her hydrated. That all might take 2-3 days. Maybe out of ICU this afternoon but probably tomorrow based on bed availability. Then once she's able to leave acute care get her up to the 4th floor for intensive physical and speech therapy. Once they deem her capable she can go home and then continue outpatient therapy.

And then we are back to Kaplan, our oncologist, to fight the melanoma battle.

Riley flew back to Pomona last night. We will skype and talk by phone and text often. He will fly back in ten days for a visit and then go back until graduation May 15. After that he returns home.

Casey is living at home but got work off last week and this week. I sleep over with Meagan and he comes down late morning to be with her (today he plans to read her The Princess Bride). That gives me a break for a few hours. He is outright amazing with his mom. I've had two no sleep nights the last week and overnights in ICU or Acute Care are hardly restful.

I believe she will be able to start seeing visitors once we get her to Acute Care. On a metered basis. Stroke victims (that's what she had - her brain tumor burst and hemorrhaged blood and filled brain cavity) get overstimulated and tire easily. She's working so hard on her language and a lot of mental effort to figure out her situation and remember her long term condition and it's frustrating. But she still laughs and her personality is all there. There are some definite words she is always able to get out when she is frustrated if you get my drift.

And she's sporting a new look! Head is mostly shaved, a bit ragged but we can smooth it out once all her staples are removed. Her hair will grow back and I'm sure she'll want it long enough to cover over the horseshoe sized scar on the back of her head. In the interim she is wearing one of her beautiful wool hats.

Meagan's had a good afternoon. Eating. Drinking high salt things, Hates the V-8 and tomato juice but thought the Ensure was ok. Putting sentences together and short phrases. But still aphasia and saying one thing when she means another Her boys are attentive. Starting to get her sharpness back. Tough deal but she's a trooper. Aware that Riley's heading back tonight and a little sad. Made the decision to go for it and cut all her hair off!! Very chic!

Cerebral Salt Wasting After Brain Surgery

Turned out to be quite a bad night last night. She ended up having cerebral salt wasting. About 7:00pm I just said enough and got docs called Things take forever here but by the time doc arrived she was nonresponsive. They got a CT scan and got her to ICU where she is now for next 24 hours. Her sodium level went from 139 to 121. Her surgeon just came in with his team ( third set of docs today two of which were neurologists). He said it's just an uncommon but event which does happen to brain surgery patients. After they get her stable at right level they can't bring her up too fast she will have supplements and they'll track her sodium levels. He said risk of recurrence is rare and shouldn't have caused any additional damage and that her CT scan looked quite good. Just needs recovery. Her language skills disappeared but he said they should come back quickly. Even though she can't talk the first thing she made clear to me was it was time to buzz the rest of her hair off, it's a rats nest.

Oops one more thing

Its back to ICU To be monitored carefully. Turns out her CT scan looked fine. Thats good news no bleeding  They did give her more steroids to reduce potential inflammation. Plus her sodium count dropped a lot. Apparently it's common. So they'll put her on a saline drip and that should do trick. A bit of a setback physically but shouldn't affect brain healing process. Got a nip of sleep now and again but much like first might. 

Ahh the life of a cabana boy.....

Mystery solved and proof you need an advocate

Throughout the evening her headache got worse and worse and she became incoherent. I got the nurse on it, who agreed something wasn't right. She paged the on call neurologist who got here about 11:30pm. Her suspicion - after exam was that they tapered the steroids too fast for Meagan and the swelling in her brain wasn't going down. So it was getting crowded and impairing function Rushed her down for a CT scan which took only two minutes. The CT scan operator's comment on seeing the images, "she must have one heck of a headache". Then radiologist reviewed and doctor increased the steroids. Plus some morphine to ease the immediate pain and get her to sleep. so tomorrow should be a much better day. But she had to endure a lot of pain today so much so she got nauseous What a lousy thing to have to go through. I felt so bad for her but am happy it wasn't something much worse. She should feel so much better tomorrow. And hopefully back to talking well and back to her old self.

Moral of story? If things start going south don't just listen to the old hounds. I'm going to give Ethel a piece of my mind when I see her next Be vigilent and don't assume. Insist on competent exam. Advocate. I raised enough concern they had to respond. Fortunately the doc who showed up had seen her when she was in ICU and saw instantly the profound negative change. Glad we stayed within the system. And glad they have CT scans that can crank out a scan in 2 minutes!

Pain management

Afternoon update : she's not doing very well. Severe headache. According to our wonderful nurse Ethel who has seen a lot of this, the pain waxes and wanes after brain surgery Meagan was trying to manage with Tylenol but the pain is too much and she couldn't even sleep. So she's agreed with all her men and is on to morphine. Well she wasn't exactly coherent but we decided and she didn't disagree The doc authorized up to 4 somethings she started with 1 and now she's finally asleep. We can keep escalating dose if she needs it. They are also looking into other things. She's never been great with narcotics due to nausea but hopefully we can find a balance. It's a relief to see her out actually.

It was a long night

Had to have a little morphine for the headache. She's s bit better this morning. Got uonand had breakfast. But now is slumping. Doesn't feel as sharp or articulate. We are told it's pretty common to have a bit of nausea plus headaches after surgery and it will wax and wane. she's a bit frustrated at her inability to articulate, feels less able than before. Is pretty tired of being here but can't be helped. She needs her medications and pain and anti-nausea meds plus as she is able to get going with speech and physical therapy.

Rough day

She's had a bad day. Pretty bad headache. A part of the healing process we are assured. Goes up and down. But it's been hard to manage and she's been in pain, shaky and nauseous most of the afternoon and evening. She's no wuss so I know it must be bad. The nurse is attentive up here in acute care, but they have to cover more beds and it's not quite as polished SS intensive care. Of course it's probably a big cost difference too. Could be a long night.

Update

She's continuing to improve, although likely long term right peripheral vision impairment.  Slept ok last night  Tiring day yesterday, despite desires, a few too many people showed up. First start of physical and speech therapy and that was exhausting. She has difficulty in several cognitive areas but those should improve rapidly. She has her spunk and zest and personality. Difficult decision ahead on her hair. Complete buzz, avante garde punk, or short sassy for what's left. Most of back and one side is gone already so frankly I think any route is good. She will be wearing  her massive scar with pride  A 10:00pm visit by Kaplan was the best nightcap.   He's reviewing some discrepencies in MRIs to figure out if in fact there is another tumor up there.   In any event he's building a treatment gameplan based on this event.  First step is rest and rehab, then radiation for remnants and any others, then on to Interleukin2.    Clinical trials in Bethesda are out for foreseeable future. They don't accept candidates with active brain tumors.

She needs rest today especially with room transfer and anticipated therapy so we are going to be strict no visitors. She's supposed to be transferred out of ICU this morning to a standard hospital room here at Harborview, not Swedish, because we really don't expect her to have to be hospitalized much longer beyond Monday. They don't discharge over weekend.   They want to get started on physical therapy and speech pathology intensely because of her field of vision issues. Once out she will need to continue these on an outpatient basis.  Once home she'll need support while she regains strength and motor skills and vision compensatory skills. She's already getting quite good at word circumlocution to compensate got her aphasia. 

Oh and her butt hurts from so much lying down. 


Much appreciation for all the love and support.

Hard to express how challenging this is

She's slowly recovering from her brain surgery. Has a bald head in back and one wicked horseshoe scarvsecured by staples. Impressive ny anybstandardvbut she's not thrilled about the hairless. Has weakness on right side and difficulty speaking and some vision issues. Daily improvement and self awareness. But this is a huge setback in the cancer battle. Clinical trials are out. She needs recovery time before radiation can be applied to her other brain tumor and remnants of first. Then weeks of recovery before interleukin can be used. That's a long time before a shot at systemic treatment. She's just becoming aware of the challenge. Boys are here and have been a huge support to me, their mom and themselves. Wevare so loved and supported by our friends and family. Thank you everyone. One day at a time. I should say she is alternately funny, frustrated, sad, and grateful for the love. She hasn't lost her personality wit and quickness. The words are hard to come. And she finds it weird and scary that she had this disconnect between mind and right side. But we are hopeful with time and rewiring it will become normal. I expect her to move from ICU in next day or two. We want her under Kaplans care to look at this holistically.

We are all pretty tired but sharing the load. She's never alone. tomorrow she'll work with a speech pathologist. Ok enough

Quick update.

She's resting comfortably in ICU of Neurology at Harborview. Will try eating and some physical therapy today. Frustrated that she can't find words to express thoughts. On steroids to reduce inflammation. Casey stayed with her last night. I got 7 hours sleep at home I got here early and he's back home to sleep. Riley slept at home too. Should make progress today. Starting to talk about where to transfer her now that she's out of critical stage. MRI last night was good. So out of immediate danger.

About as bad as it gets

In ICU at Harborview. Discovered she had two brain tumors yesterday. After returning home from oncologist she had a massive hemmorage of one of the tumors. She had brain surgery last night. She had quite a bad event. Prognosis uncertain at this point. She's on a breathing tube. This we did not see coming.

Of course I'm worried...

true, the brain MRI was only for the National Cancer Institute assessment we have on Thursday. It's part of their protocol because they want you scanned from head to toe. And some of their clinical trials exclude you if you have a brain tumor. Meagan had one brain MRI early on, and Kaplan told her, "your smarts are all there", and no evidence of tumors then. But that was then and this is now. We know the cancer has spread throughout her body. I know that melanoma likes to go to the brain after the lungs. So while there are no symptomatic reasons to be concerned, it is a scan, there is a possibility there is something there, and the repercussions would be epic.  I hate this job.

I mean, I wouldn't want anyone else to do it. But the uncertainty and having to be ready is really hard. I know there are effective treatments for brain tumors (gamma knife surgery, which is targeted radiation). But it would still be very challenging news and cabana boy would be working double overtime to handle the fall-out. At least we will be hearing the news from our oncologist. And we are headed to Bethesda for the best treatment possible, irrespective of where her melanoma is landing.

We are going...

No matter if the government shuts down or not we are going to Bethesda - they will see us. That is a load off my mind! Now we can get on with the dance and find a clinical trial that is appropriate!

Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can't be on if you have a brain tumor. We didn't really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.

At least by Monday afternoon we'll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.

Latest news on impact of government shutdown

"As far as the shutdown: Things are changing hourly. The last we heard was that the Clinics will be closed and we will not see new patients during the shutdown. We will likely start seeing patient immediately once the government reopens. If you would like to delay your visit until we get word that the government is reopening we can accommodate that. Please be aware that there will be no one in the office during the shutdown and we are legally prohibited from checking our work emails during the shutdown. We are expecting to have a meeting with Dr. Rosenberg later today to get more information about how we will be affected and I will pass on any information that I can."

A Plan, subject to...

All the logistics are set for us to go to Bethesda next week. Got the package from the National Cancer Institute (NCI). Pathology slides Fed Ex'd yesterday, genetic blood tests faxed yesterday, brain MRI scheduled for tomorrow, and Monday we visit our oncologist (to review the results of the brain MRI) and pick up the CDs of all the CT, PET and MRI scans and linked reports to hand carry to her appointment. Check, check and double check. What could possibly go wrong?

Alright, a plan...

We are now scheduled to head back to Bethesda and the National Cancer Institute (NCI) located within the National Institute of Health complex next week.  Our appointment is Thursday morning at 8:30am until they are done, so we fly out Wednesday and back on Friday. We've got a lot on our plate here with Meagan's dad's health issues so no time to relax and make the trip fun. The NCI process is pretty interesting. Read on if you want the details.

As if we weren't dealing with enough....

Life goes on. As we continue on this cancer journey, characterized by its roller coaster ups and downs (hard) and duration (thankfully long) - we still have the kinds of things pop up in life which happen to others. And they are hard and stressful. So you have to build this reservoir of emotional strength to deal with those events as they arise, and we've got one on our hands now.

Belief vs. Hope

One of the biggest challenges we face aside from managing the disease directly is maintaining emotional equilibrium. We all (by we I mean all of in the nuclear family) support each other in various ways. It's pretty clear Meagan relies on your truly, her cabana boy, for strong emotional support, along with incredible support from her posse of friends and family. As her pillow partner though, I often get questions that others don't  - especially in those times when she is feeling scared and vulnerable. Recently, one of the most difficult questions she asked was, "do you really believe I am going to make it?".