Here we go

I got ahead of myself again.... "Off to Sibley, I go."

Thursday night I noticed some discomfort. By four in the morning, I was on the phone with the (one of my many) on call physician. He was debating between a trip to the ER and an early am appointment. I begged for the am appointment and promised to be vigilant and call back if my symptoms worsened.

By 8:30 Friday morning, I was at Georgetown, hoping not to be admitted for a weekend of IV antibiotics. Of course, at the time, I was pretty stressed. I didn't know if this would affect the radiation start date and a weekend at Georgetown was not in the plans. (Zaira was off for the weekend, the Kowats were in town and my folks were out of town).  I spent the morning zigzagging Georgetown, between buildings and doctors. Four hours, three doctors appointments, two antibiotics later, we headed home. Like I said before, great people, funky facility. No need for a second admission in two months.

After the excitement, we had a great weekend with Jim's parents. Sweets, treats, love and laughs filled the weekend.

"Here we go" was how one of my Georgetown radiation therapist started each treatment. You change into a gown and go into the room. They line you up. You chat about the weather, your day. They adjust you a bit here, a bit there. Then "here we go" and they leave the room. Treatment begins.

Tuesday, Washington had its biggest snowfall of the season and everything was shut down. (As a local, I think appropriately.). Jim and I trekked out for a 10:00 at Georgetown. We came home for lunch and had time for a snowball fight and sledding with Miles.  Then, back out for my first radiation session at Sibley.

This treatment is not for the faint-hearted. Head pressed into a mask and locked into the table. It's like a Jason hockey mask. Or the one from Silence of the Lambs. Into loud machine for twenty or thirty minutes. Today, I asked what the emergency evacuation plan was. As in, in the event of a fire or emergency and I'm locked into the table, who saves me or how do I get out. The first response 'we don't leave without you' was not fully reassuring. The second, 'here is how you can get yourself out in the event of an emergency' was better.

Anyway, I've convinced myself that the machine sounds like one of the boys' electric trains racing around the track. That helps reduce my tension. And two days in, it isn't terrible. Hair and energy, TBD.

Here we go.

Change of Scenery

Over the past year, I've had a terrible time grappling with the fact that people still die of breast cancer. It just blows my mind. How could this still be taking lives?  It's too long of a battle.  Where is the equivalent of the discovery of penicillin?  But, at least for triple negative breast cancer, we don't have one and it is no joke aggressive.

The plan is four weeks of radiation and we hope and pray that this is an isolated incident.  And as we walk this path, I need all the karma, positive thoughts, universe-provides, prayers and prayer circles we can muster.  Let this be it.

I've opted for a new radiation oncologist at Sibley. Going from Georgetown to Sibley is sort of like going from the nasty basement of a school in the city to the modern new construction of a school in the exurbs. The space is beautiful. And private. And quiet. With natural sunlight. LEED certified.  No dead mouse in trap in the waiting room. Don't think that made the blog, but had to report that to the receptionist during my last round of radiation.

But before we chose lattes over lead paint, we conferred with my current (former) radiation oncologist. He liked the new plan better than his. So, we all agreed and off to Sibley I go.  I am nearly ecstatic about the change. I am just over Georgetown. I mean, the people there are wonderful, really wonderful, but between chemo in closets and partially partitioned spaces, radiation in the basement and the ICU, I'm ready for a new venue.

Back to the plan, the primary effects will be fatigue, comparable to last time, which wasn't too bad. And hair loss. Which, as you may recall, was way worse than too bad. For whatever reason, I am resigned and not too worried about going through it again. I've been assured the hair loss won't be painful and I get to keep my eyebrows. See, I wasn't too greedy. (I should have asked for more!!). So, it will suck, but, eh, it all sucks.

For the treatments, I have to wear a scary, insane-asylum-patient-from-the-early-1900s mask. I had that made today and it wasn't too awful.  Actually the most comparable experience was the plaster cast masks we made for self-portraits in art class in high school. Minus the excitement. But the team was really strong and efficient. It just felt organized. Which I like.  So, that's the plan.

Back home, the boys are good. (For real). My head is my own again (For realer everyday).  Days are getting longer. Almost through February, shortest and longest month of the year.

A sassy lot

Yes, that's you!  Seriously, I knew folks would be looking for an update. That is why I wrote a post last night.  I shared what I was comfortable sharing.

I do not know what our plan is. I am meeting with another radiation oncologist this week. I do not know what she will say.  I do not know who will treat me. As my current radiation oncologist said, reasonable physicians can disagree on this stuff.  I do not know what the plan is.

The tension (for me) is always between my need to express myself -I literally push these words out and then my load is easier to bear - and my need to protect my family's privacy. Jim had a rough day. That wasn't the day for me to blather on about how I feel.

I appreciate and love my strong (today, frustrated) community of support.  Hold tight, friends.  In the meantime, I'm gathering information about how to proceed, but not sharing rough drafts.

Get through day. Repeat.

It's Tuesday night and I don't really have much to say.

It was a tough day. For better or worse, I did not really learn anything new.  My radiation oncologist had visited me in the hospital before the surgery. I don't have great recall of the conversation, but I had the highlights.  Jim wasn't there when he came by.  I had summarized for him, but this was the first real peek around the corner.  Jim says it was the hardest conversation yet. For me, last December's two weeks of hell was much worse. But then it's sortof all shit, so who cares which was worse.

We left the appointment with a lot of information and a solid understanding of the recommendations and rationale.  So a good meeting. Jim generously provided comic relief by ripping an enormous and indecent hole in his pants as we got into the car.  We stopped for breakfast in a sunny spot and talked and cried and lingered.  Then we bought new pants for Jim.

Jim went to work. I hunkered down at home with Ian and Zaira. And then Miles too. A friend brought a delicious meal (seriously the food deliveries are amazing. As I believe I mentioned last winter withthe infamous  caterwauling post, even on my best days, I am only decorative in the kitchen.). Watched the Caps beat up the Kings and we are to bed.

I thought the day was better than expected.  Jim, he thought it was just about the worst. One foot in front of the other. Repeat.

Humble and positive

I know, I know. It's too bad I was so confident about having my head back, thinking I'm writing about cognitive function and my week and then publishing this meandering, typo-filled piece with my recollections from the hospital and the impressions of the medical staff. Perhaps, I was overly confident.

Two observations here. First, positive thinking. I believe in it, so maybe my optimism makes it so. I noticed in several posts since I got home, I said the family is good. Each next time I said it, it probably meant I was wrong before.  But, eventually, we got there and perhaps all my 'boys are good' helped us actually arrive at my boys are good.  Miles is happy. Ian is happy. Jim is happy. So, my thinking is, maybe soon, my head will be my own again.

Second, even more optimistically, I wrote that post after a fantastic night out (but in) with some ladies from Mt P.  It was so lovely, I think I can reasonably blame the champagne and call that a boozey blog.

Lets talk about thank yous for a minute. I know I'm tardy. I started writing them in December, but didn't get very far. Writing thank yous is so important to me.  I want to write them and I want to write  good ones. But I just do not know that I will get them done. I've written 14 thank yous. To give you a sense of the magnitude of your generosity, and not counting flowers and fruit and food deliveries (and there have been many), I've probably received thirty cards in the past two weeks.  Which is amazing and fortifying and I am so grateful.  So you know, I have and will keep every card, note and scrap of paper in support you send me because I love them. And also I want my boys to have them -like my hair- if they ever need them to know me or know how strong and rich our lives were during this difficult hour.  All to say, I am far behind and I am not sure I will catch up and thank you.

A note about Ian. He has made it to 18 months (I think the period between 12 and 18 months is the hardest - not baby, not kid, in everything but no attention span, but anyway, we are through it). He is so fun. He plays now. He pretends. He is so different from Miles, who had dozens of words and used
them all.  (And still does. We went to the Caps game today and he said, "Chimera really hustled."  Ridiculous parent pride.). Ian has dozens of words and basically says happy birthday and aqua and apple and brother. I mean, happy birthday. Few words, big charm.

Next week it's the first week of February. My dread is growing.  I know I just need to get in there and start to work it out. But all the sudden, I kindof want to hide under the bed. Shit week ahead.  Oh right, positive thinking. Maybe not.

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.