My head is my own again

Here we go. Busy week. Keep up.

We almost made it. But we didn't. Last night on steroids was epic. Not in the cinematic way. In the I'm explaining to my girlfriends and making them uncomfortable way. So, let's see. How to summarize. I broke a lamp. Intentionally. Jim would never break a lamp. Ever. Under any circumstances. Even to ward off evil, Jim might not break a lamp. I broke a lamp and it was awesome. It broke into one million pieces and made a very satisfying sound. And then I insisted that Jim clean it up because he provoked me.

So, that was a bad night.  (It's just a lamp).

But there is good news here.  Regardless whether you agree with me, understand me, judge me, are horrified by me (Jim), recommend I not share this with anyone, the good news here was that my head and thinking were clear.  My thinking was - I'm on day 15 of steroids and I should not have been teased by my spouse who was aware how much I've been struggling to manage their side effects. Don't poke angry bears. That's just common sense.  To me, who cares about a bad night, my head is my own again.

More positive cognitive signs.  I jaywalked today.  You probably do it all the time without thinking. But that's the thing about brain surgery.  Who knows what your post-op status will be. Post-op things were slow for me. Clearer than the pre-op confusion. But for sure slower. And I mean, who knows why. The anesthesia?  I mean the general anesthesia process alone was a whole thing. Getting the brain to slow so they could operate on it. I was in surgery with my friends the anesthesia team for hours before the surgical team was even teed up.

You know, before they put me under, they said, we will wake up up after the surgery, unless we decide you need to stay under for a day or two longer.  Ah, okay. See you in a couple of hours or days. I remember asking Jim to promise to tell me what day it was first thing when I woke up, so I'd know how it'd gone.  I actually have no idea if he did. I probably didn't remember it when I woke up anyway.

Right, so maybe the big dose of anesthesia slowed me down.  Or the surgery.  Or the swelling in the brain. So, anything hazardous was definitely not in my bag of tricks for the past few weeks.  I
wouldnt put myself in a situation that required quick walking or quick judgment or even quick observations.  But, today, I slipped across the street against the light and didn't realize it until I was across. Big progress.

What else.  Staples!  They said it wouldn't hurt. Lots of people did. A friend was smarter.  That sounded suspicious, she said. Thirty staples pried out later, it hurt. I mean, not big tears and pain but it felt like something metal was being pried out of my head. Hmm. And now my head looks like there is one little row of corn that has been harvested in the middle of head. So, gross. But Miles thinks it's better without the silver. So, progress.

My moon face is back.  I had a crush on a guy in law school.  He was cute but had a slightly too big head.  I'm not sure of my memory on this, but I think I called him big head Bob. Amy or Sharon will confirm, I'm sure. Anyway, thats how I look these days.  Like big head Bob. Apparently, tissue swelling and water retention and a two or three week lag until deflation.

Three weeks since I had Irene call an ambulance. Crazy. I had called Jim from work and told him I was having trouble thinking and was confused and wasn't sure what to do. Go work out was his recommendation. I sent him off to his meeting and called Irene and asked her to come to my office and help me think about this. I told her I was having trouble writing a three sentence email. That I felt out of it. That I wasn't sure I knew Jim's phone number. We talked about whether she'd take me to the hospital or whether to go by ambulance.

I did not have any idea what was going on, but I knew that it was odd that I couldn't think clearly and somewhere in my head I was worried about a stroke. Ambulance, preferably without sirens and a scene.  Irene and I got my things and walked around the building to the 7th street entrance. I saw the GM of the building, outside because I'd called 911 from inside the building. I was trying to avoid that. But he's a friend and I knew would make sure Jim knew. I remember hoping Jim could just stay at work, in his meetings til I got this sorted out. Unusually lofty.  I don't know what the timing actually was, but it seemed Jim was there shortly after I arrived.

They were unimpressed at first. I could tell the ER physician did not think there was anything wrong with me. I sat on a stretcher in the hall for a bit.  Questions, blood work, medical history. The CT scan broke it open. ER physician was back at the stretcher pretty quickly after that. Someone else was swapped out of a private area.

I had the opportunity to observe my must have been first year neurosurgery resident collecting himself before he came to brief me. It was funny - I watched him, wondering what he was doing.  Until he turned and approached. While he talked to us, I remember I kept looking at Jim, trying to read his expressions to help me process whatever my young neuro friend was telling me.

I don't know and I guess it doesn't matter, but I think he'll remember us. He broke a lot of bad news to us over the course of a week. But it was also clear that he was concerned that I would be concerned and he worked hard to persuade me not to be defeated by the news.

That ER physician visited me after my surgery.  He popped by one afternoon to check in. I've seen a lot of young male physicians over the past few weeks and I've been really impressed by their focus and compassion.  Maybe it's because they are young.  Or because I'm (relatively) young.  Or perhaps just because they are well suited for their chosen paths.  But an ER physician popping through the ICU to say hello the next week - that's impressive.

Reading the chemical ride

I was thinking about what I want.  Anticipating how to answer the question everyone asks - how can I help. What's so hard is just that all I want is my own tedious and exquisite life.

I watched one of the most gorgeous and glamorous wedding videos on a friends Facebook page today. I expected some sadness. Some envy at the promise and the glamour and the richness of her life.  I felt none. I actually felt such a resounding sense of gratitude for my own messy, chaotic, noise-filled, grief-filled, no dishwasher-having life.  Incidentally, Mom and Rick did draw a very random line this week. The old stove was too much - dirty, hot, hazardous, many things.  A new stove arrived today.

Anyway, I'm so cozy right now.  It's been eighteen months in this house. It feels like my home.  Which is so deeply important to me. So much better than when I was on maternity leave with Ian or even during the chemo eclipses last winter.  "Cozella" a Dutch word Casey and Dana taught us during our NYE visit to Amsterdam, maybe five years ago. How old are our pack of boys? Eh, maybe six. Cozella applies. I feel good in my home.

Tomorrow, I will über to work. Not sure about Wednesday yet. Thursday they'll take thirty stitches out of my head.

Next week, we will get a radiation plan.  Which apparently will result in hair loss. I had been told that but had forgotten it in the post-surgery haze. So, that was a bit of a shocker in my Monday. Because I didn't already climb that mountain.

The thing is with cancer, you don't get to ask for anything.  You have no terms. It's crazy.  In life, in my life, you always at least get a chance to ask for something.  Maybe the answer is no, but you can ask. Here, if cancer wasn't such a fucker, I'd ask for eyebrows. See, I'm not even greedy.   Fine, take the hair, apparently it's mostly missing in the back anyway.  Leave me the vanity of a face of my kids and I know.

Oh, I I turned a little angry.  See the 9:30 steroids kick in?  Only one more day.

Family care

Huge difference in the steroid reduction.  I mean, I'm not pleasant but I'm slightly less savage in my routine interactions with my loved ones.

More good news, I observed me transitioning from self-care to family-care. Last week was all about me getting me (obviously with everyone's help and support) into a place of caring for myself. Home. A bath. Meals. Managing steps in my three story house. Energy for motoring around the house. Small interactions with the kids.  And I mean, small. An outing with a friend on thursday. Friday we went to breakfast as a family.  But I wasn't watching the kids or feeding the kids or making sure they weren't running in the street. I was getting me into and out of the car and trying not to yell at everyone and such.

Today, I did bathtime and bedtime for both kids on my own.  This is huge. Inconceivably exhausting and excruciating (noise and chaos) two days ago. I stripped them down at the dinner table and took two naked dirty boys up for a bath. I did not technically adhere to my lifting requirements (Ian is more than 5 pounds), but it was awesome.  Ian was happier than he has been in weeks.  Giggling and giggling and giggling and undivided kisses and tickles.  Family care. Yes, this feels better.

I cried twice today.  Two different quiet moments of grief for my kids and the losses they may have to bear. I believe this is the lessening of the steroids as well. A small thaw.  So an increase in sorrow but also a connection back into the pulse of my family.

We are making progress. We all went to the market yesterday.  We walked to the kids to the park today. We bumped into neighbors in the alley this afternoon and whiled away some Sunday afternoon.  Jim and I will take miles to school tomorrow.  I'll be by the office this week. What comes, I still don't know.  But I'm grateful because at least I recognize my present.

Muddling along

I stumbled on a few interesting articles on the New York Times. "Faces of breast cancer " caught my attention. For the first time, I was curious to look around.  The peers I found surprised me. I saw a lot of pictures of mothers with young kids. I saw a lot of families who look like I feel.  Smack in the middle of our joys and richness - the pudding of life. With breast cancer. It was a younger picture than I expected. I draw strength from the images.  These are not just my friends mothers. These are me. These are peers stripped bare by some cancer and it's power to take, divide and sometimes give back.

There was also an article on the power of writing your personal narrative experience on defining and redefining the experience as positive. It's essentially what this blog is. My effort to understand, give meaning, take meaning, provide myself and others a sense of something tangibly meaningful from life - an arbitrary and uninfluencable sequence of events.

Jim reflected on our two weeks last night. I didn't realize but two weeks ago, he was sitting in the hospital all night with Brian while I waited for the midnight MRI. When he reminded me, I barely remembered it.

Two weeks on steroids.  I'm testy. I'm emphatic. I'm literal and impatient.  My dosage has been dropping and today I got to reduce it by fifty percent.  I'm off steroids in four days.  I think we are all looking forward to the side effects tapering off.  What's another four days.

I just try to explain to Miles in the quiet moments that families love each other no matter what. He has definitely suffered thrugh some moments I'm not proud of. But again, I believe in family.  It's messy, true and raw and silly and strong.  And it's okay if you get it wrong sometimes.  Just try harder next time.  Ain't that some shit to try to message to a four year old to explain why mom is acting crazy.

Jim just can't quite get who I am on steroids. I'm pretty emotionally aloof. Maybe that is a thank you to the steroids. Mom might be crazy, but she sure isn't weepy. So we don't make very good sense or communicators right now. That's complicated for the kids too.

Head case update

I guess what's hardest now is just that I don't know anything.

I am home. My head is clear. Ish.  The ish is the result -in my extensive medical expertise...-of the steroids. We remember them from last January, right.  Charm and serenity enhancers.  Patience-makers.  They are pretty wretched. Oh, right, accepting ownership, they make me pretty wretched.  Jim came home from tennis last night into a heated exchange over who knows what but it was obviously all his fault.  That is probably not his favorite quality of mine these days. Anyway, anyway.

I am home.  My head is clear. My energy is returning.  My mornings are slow, but I'm participating in the get up, get out household routine.  Perhaps, not my most pleasant - see steroids. I'm enjoying Ian in the morning.  Slow time together is nice.  He is much more physical than Miles was.  He wants to push and tackle and stand on my belly.  And giggle when he knocks me over. This is getting less dicey as my head heals.

Oh, my head. I asked Jim if I could comb the hair over my yarmulke-shaped bald spot. He says it'd take a hell of a combover.  So, I think there is quite a show back there. I thought seven or eight staples.  Jim says thirty.  I haven't had the stamina to look.  Handkerchiefs are doing the job in the meantime.

Now, what?  

Somewhat impressively to me, my paralysis of grief is lifting. Obviously, more cancer is not good. But I'm missing some details that seem important.  Was this just sitting in there the whole time?  Is it new since May?  Do my scans show more or just a hell of a past year?  What do we do about it?  And yet, my mind is mostly calm. I am operating in a very narrow space.  Today is Thursday. That's all I'm doing.

So, I get up.  I move around with the kids and Jim in the morning.  When the house gets quiet, I check in at work.  What's going on, whats coming up.  You know, I like to work. Its sort of what I do.
I make some calls to figure out next steps - but no one wants to see me yet.  I rest before the afternoon.  Four to seven is intense in our house. By eight, I'm relaxing in the jelly lounge.

The outpouring is again just amazing.  Bagels from New York.  See, it is not my fault if I'm a little spoiled. It's obviously your fault. I ate this messy, juicy, mango in the kitchen sink this morning.  I kindof hoped some neighbor was watching aghast!  But fresh fruit baskets. And fruit skewers.  And flowers. And costco provisions. And cards.  And texts and rides home from school. And play dates. And delicious meals delivered. And new toys. And books.

Speaking of. I started Redeployment yesterday. I wasn't sure I'd have the emotional stamina.  But I read the first chapter and it spoke to me.  It's just 14 pages but I know how it feels to be walking around just wrung out with grief, rage, sorrow, despair and smiling and chatting about some little something and wondering who else exists on two planes.

That's plenty for today.

Monday

I know what day it is and that is a big deal.

My friends in the neurosurgery team felt it was very important to ask me questions about the day.  The year, the president, uses of everyday objects, and flash lights in my eyes on an hourly basis. I did not like it. Oh, and a personal favorite, doing subtraction by sevens. Give me a vocab test you math and science geeks!  They were a good group of physicians and I hope they appreciated my ... spirit?

A few Monday thoughts.

Flu has passed through house. Ian, Miles, Zaira and Jim are recovered. Mom and I are ok.

I had a very long, sunny, hot shower all by myself.  The last of the tape residue and betadyn is gone. I used some Chanel products.  I'm sleepy and ready for a nap.

House is returning to its usual energy. Boys are returning to themselves.  Things are softening.

Tomorrow, school for Miles. Work for Jim, perhaps. I'll stand up, stretch around and start to think and sort through some things. Small steps into the week.

Whatever day today is

What a week.

I essentially lost a week of my life.  I remember it, but not totally.

I was at work.  I was confused.  I got help from Irene getting to the hospital.  Jim met me there.  The man who walked me back from the ctscan was very gentle with me.  I noticed.  Confusion was the result of swelling from tumor in brain.  Unclear what I was really able to understand about what was happening.

I ended up in the ICU.  Good to have the care and attention.  Not a very nice place to spend a week.  I ended up in a room with a very ill patient.  I thought we might both die before the week was out.  It was awful.  I was frightened and incapable of really understanding what was going on.  I hope my memories of the past week fade soon.   I thought I was going to die in there.

I didn't.  I am home.  That is amazingly good.  I keep trying to remind myself.... home for one day.  home for two days.  Step forward.  Step forward.

I am struggling with a substantial amount of grief.  I am working hard to quiet my mind.  To still my grief.  To steady myself.  It seems there is more to come - cancer, radiation, chemo, surgeries.  I don't know yet.  I am working to put one foot in front of the other.  And then the other.  And then find some space to breathe.  Difficult work.

Kelly is in the house

Just a quick note to let everyone know that Kelly came home yesterday as planned.  Sorry I didn't get the word out sooner.  Goes without saying, but a vast improvement over a shared hospital room with a guy (yes, a guy) and the constant hum of throat suctioning from his tracheotomy.  Since yesterday, Kelly's been resting quite a bit, but also up and about the house, playing with the boys and watching "Planes" with Miles for the umpteenth time.  Thank you again for all of the messages and gestures of support over the past week and still coming in.  Kelly will be back with more soon...

It's Thursday.

It's Thursday.

I'm pleased to report that I am sporting a mean 'Friar Tuck'.

Post-op, I apparently made an impression on a lot of the ICU nurses.  One of my first questions to the nurses when I got out of surgery was 'how does my hair look'?  They don't get that a lot around here.

I have been able to get up and down by myself, including stairs.

Discharge is Friday.  

I'm not really checking my phone or being too responsive because I'm still a little thick.  Hopefully that's the steroids and not permanent brain damage.  

My spirits are pretty mixed.

My time in the ICU has been difficult...there are a lot of ill people around, discouraging my spirits.

I'm glad to be through the surgery, but frightened about what's ahead.

Bone scan is this afternoon.

I miss the boys, I'm ready to be home, but also frightened about being home.

Hoping for the low cloud cover to lift.

Kelly's out of surgery

It was a long long day, but Kelly came through surgery 'great' according to her surgeon.  She's alert and talking and sassy as ever.  They want her up and walking a bit tomorrow, and hopefully out of the ICU in a couple of days.  She'll transfer to the regular neuro unit after, and be home by the weekend ideally.  Still a long road ahead, but one huge step is behind us today.  I will keep everyone updated if Kelly doesn't beat me to it.  Many many thanks to everyone for the outpouring of well wishes and concern and love.  It's been tremendous.  

-Jim

Super Tuesday

It's super Tuesday.

We are a bit anxious but ready to go.

I am very curious who is going to come out the other side of this.

There has been a lot of swelling, but it seems that it's reduced and I'm thinking a little more clearly.  My focus is getting through the day.

I am hungry.  And I would like a nice coffee.  Obviously I have my priorities straight.

We're getting good care and support.  We'll update you when we're out of the most current cancer eclipse.

Surgery Tuesday

First off, thank you one and all for the outpouring of love, concern and generosity over the past few days.  We are so grateful and fortunate, again.  And know that even if Kelly and I don't respond to emails or texts or calls immediately or at all, please keep the messages of encouragement, of humor, of solidarity in your shared anger and sadness coming.

Kelly is now scheduled to have surgery to remove a brain tumor on Tuesday.  Her neurosurgeon and oncologist will not know if it's breast cancer until we get the pathology on the tumor, but we're told it's likely breast cancer and is likely triple negative.  After surgery, she'll be in the hospital, recovering for roughly 5-7 days and then home recuperating.  Surgery will be followed by some period of radiation, still to be determined.

It's unknown if this tumor was there all along or if it's something new.  Apparently the brain mostly protects itself from allowing chemo to penetrate it, so it's possible that it wouldn't have been addressed during Kelly's rounds of chemo.  

Until Tuesday, Kelly will remain in the neuro ICU at Georgetown Hospital.  But she is on 'step down', meaning that the medications to prevent seizures and reduce swelling in her brain have improved her condition.  Her cognition is sharper and she hasn't had any sharp headaches, which means that the swelling has decreased presumably.

During this time, we're also waiting on the results of a PET scan from the neck down.  Her oncologist ordered the scan to find out if the brain tumor is an isolated issue, or if there's something larger going on.  We should know more tomorrow (Monday).  Needless to say, please shine that light, send positive thoughts, keep us in your prayers, whatever it takes.

Many of you have asked about our spirits.  That's a tough one.  It's minute by minute.  It's everything all at once.  Not defeated, definitely very bruised, confused...is this really happening again?  Trying to find humor and reason for hope.  Yet overwhelmed and daunted by so many hurdles, so many unknowns, so many questions.  We felt like we had a handle on our future again.  We were set to go skiing with our good friends in a week.  Putting 2014 in the rear view mirror.  "Jelly" was getting back on track.

And then there are 2 little boys who make us tear up and smile at the same time, just thinking about them.  They're both sweet and good and joyful, and give us the strength to keep on.  Miles made a visit to Mama at the hospital this morning, and Ian is going to stop in tomorrow.  Family and friends are jumping in to make sure that they're well taken care of, having fun on play dates, and more.

I'm going to continue to update Kelly's blog until she can take over again.  Her wit and humor and raw honesty will be back, promise.  I'm going to do my very, very best to make sure that happens.

Jim

This is Jim, writing for Kelly.  I'm writing because Kelly's at Georgetown Hospital's Neuro ICU.  Over the past couple of weeks, she's been having sharp headaches, nausea and confusion.  She was rushed to the hospital yesterday, after suffering confusion and difficulty concentrating at work (and not in the procrastination kind of way).  Since then, the hospital has been running a series of tests, including a CT scan and an MRI.  The CT showed swelling in the left side of Kelly's brain, which is an indication that a mass could be present.  This pressure from the swelling is what's causing her confusion and difficulty concentrating.  The hospital admitted her overnight, and have put her on steroids to reduce the swelling as well as given anti-seizure medication.  The medicine has helped reduce the swelling and consequently confusion, but now she's quite tired from lack of food.  They're restricting her diet in case surgery is needed.  We're now waiting for the neuro team to make their rounds and most importantly, give us the results of the MRI.  Then we'll figure out a plan / course of treatment.  Lots and lots of waiting in other words.  We will update the blog as we know more.  Lost of love.